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My husband had finished his requirements for graduation from dental school at THE Ohio State University, and was given a menu of options and opportunities regarding where he could spend some discretionary free time. He chose to work at University Hospital in Columbus, Ohio, doing dentistry for children with special needs. 


He was taught in dental school to look into the eyes of his patients to be sure they were not experiencing any discomfort (okay, pain) as a result of whatever procedure was being done. What he noticed when looking into the eyes of these children with special needs, was how absolutely beautiful, even captivating their eyes were. It wasn’t just the color of their eyes, or the fact that some of them couldn’t even focus their attention on something. It was just “that look.” For most of them, they could only communicate with their eyes.  It fascinated him to watch their eyes as he worked on their teeth. 


In the early years of our marriage and his dental practice, he worked in a few nursing homes whose residents were children with special needs. Dealing with drooling patients with flailing arms, squealing with uncontrolled emotion, was very sobering and challenging—not only from a dental perspective but from an emotional perspective, as well. 


He was always thankful to come home where things were calm and “normal.” 


When our son Joey was born he seemed quite “normal,” but one night, Joe was caring for Joey so I could get some needed sleep. Joe scooped Joey out of the crib like he’d made a great football catch and took him into the family room to play on the floor for a bit. As he rolled Joey gently back and forth, even rolling a ball to him, attempting “catch” with his infant son, he caught a glimpse of Joey’s eyes that took him back to his experience at University Hospital. He knew “that look.” He picked Joey up and held him close, saying, “Oh God, not my son!” 


What Joe realized that that night, I was not yet seeing. I noticed that Joey wasn’t doing the things others his age were doing, but the doctors assured us he’d catch up. But the truth was this: instead of catching up, the gap kept getting bigger in what he could do and what he should have been able to do. 


For Joey’s first birthday, a few of my gal friends and their children gathered at the home of my parents for a little picnic. All the other children were running around, throwing stones into the pond, and eating a kid friendly lunch by themselves. What a shock it was to me that Joey could do none of that. He sat is the high chair, had to be carried everywhere, and needed help putting food into his hand. 


A dear friend, whose son was a little younger than Joey, but running circles around him, privately chatted with my mom about the boys. She shared her concerns about Joey. Because she cared enough to share in such a loving manner, it prompted us to begin asking some difficult questions of the doctor and pursue testing. It must have been difficult for her to bring up her concerns, but what a loving gesture that was. She was often the one to call me at just the right times - when I’d gone through a rough day - listening to my concerns, allowing me to cry, and encouraging me. 


Sometimes we want to deny what we see. We want to close our eyes, and pretend what’s happening isn’t. We want to turn our heads the other way or even go to sleep. But denial won’t get the help that’s needed. We need to open our eyes, and move forward. 


Once we accept what we are seeing, we can begin to take the necessary steps to seek the right doctors and diagnosis - getting the help that will allow our child to learn all they can. The earlier the recognition and acceptance, the earlier we can get help, and the better chances the child will have to gain the kinds of skills and learning they’ll need to make it in this world. 


I’ve been on this journey for 29 years and counting, so I’ve had many opportunities to look into the eyes of parents and children. What is very difficult and challenging in the early years can indeed become a great blessing later on. 


Today, if I’d be asked to vote whether I’d take this journey again, I know I’d raise my hand and say, “The eyes have it!”

 

Used by permission from “Unexpected Journey: When Special Needs Change Our Course,” by Joe and Cindi Ferrini. 

 

Cindi Ferrini is the co-author of “Unexpected Journey: When Special Needs Change Our Course,” and “Get It Together,” as well as a popular conference speaker, artist and mother of three grown children, including a son with special needs, Joey, 29, who still lives at home and provides daily smiles.  She is a regular ShareWIK.com columnist.  To find out more about Cindi, visit her website: www.cindiferrini.com

 

Read other Cindi Ferrini columns here. 

 

©2010 ShareWIK Media Group, LLC

Looking up a phone number to make a phone call is beyond the abilities of my special needs child, Joey.  He is not able to call to make an appointment. And if he could call, to be able to articulate his needs into words is not possible. To report to someone he is being mistreated isn’t even on his radar screen. Although he is able to talk (in phrases and slowly – if he can think it first), the ability to ask someone how to get something he needs is not easy for him. 

 

Joey, 29, needs his family to care for his needs, to open our mouths, and get him what he needs. His is not a life of wants, but needs.

 

As parents, my husband, Joe and I feel as if we know our son better than any doctor, therapist, or teacher; but we’ve always listened to and appreciated the help and support they’ve given.

 

Having also helped in the care of our parents, we found that becoming experts on their care was different. We hadn’t “grown into” their issues as we had with Joey from birth, so we had to rely on the help and advice of others to help us make decisions in the best interest of each parent. In addition, if another person was in charge of that parent’s care, we voiced opinions but supported the final decision of the primary caregiver, whose responsibility was to listen to advice and concerns but do what was best even if others were critical of the decision. We trusted that the caregiver was truly interested in the person’s care, not money, material goods, or some other interest that would interfere with giving and getting the best possible care.

 

But managing the care and needs of a special needs child, though a challenge, is not impossible.  Here’s a few tips I wish someone had told me when Joey was born. 

 

Tips to manage the care of your special needs child

 

(1)  As your child’s parent, you know what you know, and you must be firm in demanding what you need or want for your loved one.


(2)  Knowing what your role is and that of your husband is helpful-- knowing who will make calls, keep records, meet with teachers, go to doctor appointments, get testing done, etc.  Perhaps you will conquer each duty together, but determining that will help avoid conflict.


(3)  Keep a notebook or three ring-binder and whenever you write notes to teachers or medical personnel, store it there.  Let others add to it.  Reading and reviewing what has been written makes for better communication (that is, providing everyone uses it!)


(4)  Keep all notes, communications and correspondences, school reports, etc. in one location so you have it to refer to when you have meetings with teachers, therapists, etc. during school meetings for your child. If you don’t save the documentation, you will probably not remember it. Our book for Joey was about 6” thick. When we came to a meeting those present knew we had what would be needed and we meant business (in a nice way).


(5)  Learn the art of good communication with your spouse and all the care providers your child will have. Getting things started in a good way is so helpful to long term care and working together. Demanding and demeaning comments don’t go nearly as far as thoughtful questions and considerate comments.


(6)  Read all you can to become educated on the health, mental, physical, spiritual, and emotional issues of special needs children.


(7)  Don’t be afraid to ask questions, seek agencies and organizations that will provide what’s needed, and keep pursuing until you find and receive the best care for the loved one in your care. Depending on your loved one’s ability to think normally, she or he will appreciate your efforts to learn about specific needs. For those lacking in the ability to think normally, you are still ahead of them as you learn to deal with them in many ways, and most importantly, that you are doing what’s right.

 

Proverbs 31:8-9, “Open your mouth for the dumb, for the rights of the unfortunate. Open your mouth, judge righteously, and defend the rights of the afflicted and needy.” 

 

If we don’t do it, who will?

 

Adapted from Unexpected Journey-When Special Needs Change our Course, by Joe and Cindi Ferrini.

 

Cindi Ferrini is the co-author of “Unexpected Journey: When Special Needs Change Our Course,” and “Get It Together,” as well as a popular conference speaker, artist and mother of three grown children, including a son with special needs, Joey, 29, who still lives at home and provides daily smiles.  She is a regular ShareWIK.com columnist.  To find out more about Cindi, visit her website: www.cindiferrini.com

 

Read other Cindi Ferrini columns here. 

 

©2010 ShareWIK Media Group, LLC

 

 

If you’re socially connected on the internet, you probably saw this post on Facebook last week: 

 

“Special-needs kids are not sick, gross or stupid. They only want what we all want: to be accepted. Can I make a request? Is anyone willing to post this & leave it as your status for at least an hour? It's Special Education Week, and this is in honor of all the kids God has made in a unique way.”

 

As a mother whose son has special needs, I didn’t post it.  Not that there’s anything wrong with that statement because I’ve certainly worked these past 29.5 years of his life to educate others as to the worth of those with special needs, and the need for others to be truly accepting of them. 

I didn’t post it because it didn’t quite hit the mark for me.

Those of us whose children have special needs certainly want our children to be accepted, but that is a word rather than an action. Let me explain. I John 3:18, “…let us not love with word or with tongue, but in deed and truth.”

My son is precious to me. If you say you “accept” him, I’m delighted. But when you walk away, I only know your words, not your heart. What allows me to understand that your words hold some weight and what would show me your heart of acceptance is what I see if you talk to him, how you treat him, help him, care about him. It goes beyond not making fun of someone with special needs. It goes to the heart of helping and accepting and showing it.


How willing and ACCEPTING are you to those in your life who have special needs:


ü  Have you caught yourself saying things like, “Wow, what a wasted life – she just lies there,” “Even though she can’t respond, I wonder what thoughts and emotions are going on in her head that we just can’t know because she can’t express it. She would probably have such grand things to offer.” On which train of thought do you run? There lies the answer to how truly accepting you are of those with special needs.

ü  Are you willing to move out of your “comfort zone” of life and help?

ü  Can you hug, appropriately touch, or shake the hand of the one with special needs and say “hello”?

ü  Would you be willing to wipe drool from a chin; change a diaper on a teen with special needs?

ü  Have you considered visiting a child with special needs in the hospital so the family could step away for a bit? (Hospital stays for those with special needs are frequent.)

ü  Would you offer to stay with a special needs child so the parents could go out for a cup of coffee, a dinner, or go away for a weekend?

ü  Volunteer in a ministry at church that cares for those with special needs so their families can enjoy a service uninterrupted? 

ü  Stop over and play a video game with the one with special needs, or read them a book, or watch a movie with them….

ü  Invite them to join you in something you enjoy-a sports game (if they’re able to go), a walk (even if you walk them in their wheelchair), and a movie (if they’re able to handle the stimulus of a big screen, the loud noises, etc.), or even a meal…

ü  Invite the family for dinner. (In my son’s 29.5 years I can name only a handful of families who have asked us over for a meal and included my son in the invitation.)

ü  Offer to make a meal and come over for a visit. (Friends did this for us and we were thrilled!)

ü  Offer to do something for the family that is not easy for them to do? EXAMPLES: shovel their drive if they can’t leave their loved one alone; offer to grocery shop because their 10 year old can’t be put into a cart; bring a meal when you know they’ve had a rough week; offer to do dusting or vacuuming or any household chore once a month, planting a garden, cutting grass….

ü  Visit the family when you know they’ve not gotten out for days, weeks, or months.



So you wonder how to make this happen? Here are a few thoughts:

When you begin to think about how you’d like to be treated, you’ll find these families, like mine, are not much different than yours - we just don’t have the same freedoms. We can’t just pick up and go and our time is not our own. If you’re looking for a way to show that you are accepting of the special needs child - humble yourself, pick up the phone, and call the family.


ü  Offer what you can with what you have. If you can offer once a week, once a month, once a year…your offer will likely seldom be refused. We’ve learned to take what we get.

ü  If you’re not sure what to offer as far as help, ask them. Share with them if you’re not comfortable with something or if you’d need to be trained. They’ll help you learn.

ü  Ask God to supply you with what you don’t have – stamina, patience, or acceptance -we do it every day.

ü  Pray for them. Their job is 24/7 and for many, they will do it for a lifetime.


As you enlarge your understanding of the one with special needs and the needs their families have, you will be learning and showing how to accept them. Families caring for someone full time aren’t expecting grand things. They are looking to find a new normal to their everyday life and others who truly accept their child, their station in life, and someone who can understand the tremendous challenge it can be.

Putting actions behind your words will show not just say, you’re “accepting.”

And that sure beats just posting a slogan any day of the week.

 

Cindi Ferrini is the co-author of “Unexpected Journey: When Special Needs Change Our Course,” and “Get It Together,” as well as a popular conference speaker, artist and mother of three grown children, including a son with special needs, Joey, 29, who still lives at home and provides daily smiles.  She is a regular ShareWIK.com columnist.  To find out more about Cindi, visit her website: www.cindiferrini.com

 

Read other Cindi Ferrini columns here. 

 

©Cindi Ferrini

©2010 ShareWIK Media Group, LLC

 

 

Adjustments to any challenge are difficult, especially when it is both physically and emotionally draining. An initial diagnosis that is life changing puts the attention on the problems and issues of the person needing care, and often the caregiver’s needs are over­looked or at best put aside temporarily.


Unfortunately, we don’t always know whether this care we give is for a season or a lifetime. By the time we figure out that God has presented us with a challenge that will last a lifetime, the care­giver is already well into a routine that others think is going pretty smoothly. I say “going smoothly” because a caregiver eventually develops a routine – one that is usually very exhausting, but works. Others think it’s easy, because the caregiver is “just doing what needs to be done” and doesn’t have time to ponder how tired or even frustrated they are. A Walgreen’s ad put it best: “If only caregivers had caregivers.” Yes, the caregivers—supportive, sensitive, caring, available, loving, and tired.

Because care-giving can be and often is a full-time job, we need to understand that although great satisfaction can come from caring for a loved one, some very negative outcomes can put the caregiver at great risk as well. Like the tension on a piece of elastic, we can handle a lot of tension and frustration for a long time; but at some point something has to give.

Stress involves feeling responsible for what we cannot control or putting pres­sure or strain on something. Stress can be good, for example, when preparing to go to college or planning a wonderful wedding, activities that make us feel alive and excited; stress can also be bad as when dealing with difficult in-laws, money problems, divorce, or trying to accomplish too much in a day. Sometimes we get rolling, and we don’t know when whatever we are doing becomes too much or when the good stress turns bad, much like driving the highway without realizing we’ve gone from 60 to 80 mph when all of a sudden we see the police car on the side of the road! We may have been cruising for a while at 80 mph, but we suddenly realize we’d better slow down. Just as we grew accustomed to driving the highway at a high speed, we adjust to cruising life at unsafe speeds and become comfortable there. What we are doing works for us and might even feel comfortable, but at some point we will run out of gas! We know what to do but often believe we can’t slow down or simply fail to see the need until something stops us.

What might stop us is, for example, a marital relationship falling apart at the seams or our kids showing signs of rebellion because we aren’t taking care of the relationships properly. What has stopped me from time to time is my back “going out” or the time I lost huge clumps of hair, leaving a bald spot the size of a tennis ball on the side of my head. In our minds we may think we’ve got it under control, but our bodies may start falling apart, unable to take the pressure we’re putting on them—emotionally or physically.

Many drive the road to weary without even knowing we were headed there. Stressors like protecting the person we care for, the many choices we must make, life-threatening procedures or surgeries, financial burdens, guilt, dealing with the perceptions others have of our situation, disagreements on treatments, sibling resentment or extended-family squabbles, and finding competent medi­cal doctors, therapists, and teachers all add up to pressure. Sometimes we put the stress on ourselves, and sometimes others try to put it on us.

Of the 60 or so ideas I share in the book I wrote, “Unexpected Journey-When Special Needs Change our Course,” here are a few ways for caregivers to begin to care for themselves:

·         Establishing boundaries with people

·         Budget “buffer” time into the day – allowing time for unexpected delays, planned pressure, emergencies and “life”

·         Listen to slow, soothing music rather than fast or loud music

·         Pray

·         Get exercise

·         Laugh! Laugh hard!

·         Cry – Cry hard!

·         Enjoy a movie – even if it has to be one you rent when you can’t get out

·         Play a game

·         Say yes to help

·         Seek support from support groups or others in a similar situation

Allow others to help, but don’t wait for others to see that you have a need. When you sense you need a break, find ways in your situation that will allow for it – be creative, look for ways to get refreshed, because if we don’t take good care of ourselves, we can’t take good care of our loved one who needs us!

 

Cindi Ferrini is the co-author of “Unexpected Journey: When Special Needs Change Our Course,” and “Get It Together,” as well as a popular conference speaker, artist and mother of three grown children, including a son with special needs, Joey, 29, who still lives at home and provides daily smiles.  She is a regular ShareWIK.com columnist.  To find out more about Cindi, visit her website: www.cindiferrini.com

 

Read other Cindi Ferrini columns here. 

 

©2010 ShareWIK Media Group, LLC

A young couple has come into our life whose son is special needs. They are trying to cope with the initial news of his disabilities, the on-going therapies, and so much more. They mentioned to us that they have times of great frustration. They wondered if that ever happens to us.


Time for transparency!

 

Yes, even after 29 years, there are great times of exhaustion and frustration in parenting and caring for one with special needs. My mom, who was my dad’s primary caregiver as he battled with Alzheimer’s, had moments of frustration, too.


Sadly, here is something that happened to me not all that long ago:  I had been listening all day….and was so tired of hearing Joey’s loud screaming and vocal noises as he played some of his PlayStation sports games (which makes enough repetitive noises of their own!) I thought I could just scream - wait a minute - I did! As I was cleaning up the dinner dishes, I totally imitated him and caught him by surprise, frightening him in the exact same way he had done to me all day long. 


Yes, I lowered myself to that behavior. 


Even my husband Joe was taken by surprise. I’d never done that before, so both the guys were surprised. The good thing is Joey stopped making those noises. The bad thing is that I acted out of total frustration.


It was almost time for Joey to go to bed, which was probably a good thing. Joe made sure he was the one to help him get ready for bed THAT night! I was thankful to not have to be with him. I did not want to hear him repeat the same things he always does at bed time after having listened to him repeat noises, sounds, and vocals all day. I was at the end of my day and rope!


Those times are not nearly as often and not nearly as challenging as what we went through in the early years, and perhaps nothing like you’re dealing with in your life right now. In those early stages there was so much to learn, experience, figure out, deal with, and it’s all dumped on the “plate” of life in a huge portion! The frustration we all experience is often the consequence of all that accumulates emotionally throughout the day and week…..


So, it is normal to get frustrated. It is normal to come to the end of your rope. The key issue is that we should never become abusive. 


When we get to a point of frustration:


·      It’s good for our spouse or another person in our life, to “take over” like Joe did when he got Joey ready for bed.


·      It’s good to learn to “ask” others to help out when we feel we’re reaching that boiling point.


·      It’s important to remove yourself from the situation and “take a time out.”


·      It’s helpful to talk about what the frustration is, as not everyone is frustrated over the same things, or gets to the same point of frustration in the same amount of time (some can take a lot more for a longer period of time…others cannot.)


·      Be honest with our feelings and frustrations – to own them and learn to deal with them, as life is probably not going to change any time soon.


·      It’s always good to remember that tomorrow is a new day. Get rest so you can face it!


We’ve learned the “dance” that works for us. And you must find the “dance” that works for you so your loved one remains well cared for! 


Cindi Ferrini is the co-author of “Unexpected Journey: When Special Needs Change Our Course,” and “Get It Together,” as well as a popular conference speaker, artist and mother of three grown children, including a son with special needs, Joey, 29, who still lives at home and provides daily smiles.  She is a regular ShareWIK.com columnist.  To find out more about Cindi, visit her website: www.cindiferrini.com

 

Read other Cindi Ferrini columns here. 

 

©2010 ShareWIK Media Group, LLC

 

A New Year – new resolutions – new challenges – new goals to conquer.  But will we?  Or will this new year look like the start to many others, where we just wait for “life” to happen?

In C.S. Lewis’ Prince Caspian Narnia story, Aslan the Lion is a Christ-figure – his narrative is analogous to the story of Jesus. He wants to teach a lesson and says to Lucy, “Why didn’t you come to me for help?”

 “I’m sorry, why didn’t you come in to save us like last time?” Lucy responds.

“Things never happen the same way twice,” Aslan replied. 

Perhaps you have learned, as I have, that no matter how many times a new lesson pops up (or old ones resurface) for me to learn, I’m always taken by surprise that God didn’t meet me with an answer like He might have in the past.

As the New Year begins - trying to make changes, dealing with new (or old) lessons and issues, I wonder if you’ve learned (like I have) that putting a stake in the ground for firm change, a new beginning or direction probably isn’t going to happen for those of us caring for a child or adult child with special needs – at least not in the way we expected or hoped.

 

Change is slow, and often non-existent. Many times I’ve prayed for something to change, perhaps out of desperation, only to find that it doesn’t - like the healing of my son. Other times I’ve hoped for progress in our sons’ development, change in our circumstances, or ease in life. The answer came to me as a bit of a surprise.

 

As a Christian, I pray. But sometimes I’ve wondered why He hasn’t answered me like He has for someone else or like He has in the past – like Lucy questioned. Why does He sometimes make me wait a long time to answer my prayer for change, or answer it like I would have never expected?

 

His Word gives me a little glimpse. Psalm 138:8 tells me, “The Lord will accomplish what concerns me…” So, does He want us to learn to rely upon Him, to learn to be patient? Is it because He knows us so well, that He answers just as is necessary for us?

The answers to my questions (and prayers) has been to receive what He gives with an open hand, knowing it’s given out of love and concern for me. That’s how He teaches. And what have I learned? “…in everything give thanks” - I Thessalonians 5:18

 

God’s word doesn’t ask us to be thankful for all things; it says, “in everything give thanks.” Being thankful for war, divorce, disabilities, famine, personal struggles, etc. is a tough pill to swallow but we can give thanks in these trials when they come - learning from them and growing in them. The slight difference in wording is a big difference in meaning. And the biggest difference...will be in how that is played out in our attitude and actions.

When we give thanks, we allow character development. Often painful, we learn to give thanks for the learning process and the growth that takes place. In those personal struggles we learn to rely upon and trust in His provision rather than our own.

What becomes the alternative? Not giving thanks - becoming bitter because God, life, or circumstances dealt us a bad hand. The alternative is being miserable - thinking we’re the only one struggling with some challenge or difficulty. People seldom want to be around those who choose this alternative. They are an unhappy discontent people.

Developing an attitude of “in everything give thanks” simply takes practice. When we do – the surprise might be on us, as life starts to look like this:

We can truly be happy for others when we don’t “get” what they were privileged to get (a child who can play soccer; a child who talks; a child who walks; a child who _____,  the freedom to travel, the ability to go out to dinner, etc.)

 

We begin to show gratitude for the little things: thankful for little bits of progress we see in our child rather than just the end results. (gratitude vs. expectancy)

 

 

Our ability to invest in caring for other people will grow even when we don’t particularly feel cared for by others

 

The habit of saying “thank you” - of “giving thanks” and of showing appreciation to others and to God will be developed

Our attitude becomes gratitude.  It’s catchy – others begin to pick up on it!

 

Before we know it, we’ll be amazed at how much we’ve been given and how much we have to give to others! We’ll be amazed that He might not work the same way as He did before, but that the results will be NEW. And that will be the start of my New Year.

 

How about for you? Will it always be easy? Probably not, but I choose to give thanks and have the whole year to practice!

 

Cindi Ferrini is the co-author of “Unexpected Journey: When Special Needs Change Our Course,” and “Get It Together,” as well as a popular conference speaker, artist and mother of three grown children, including a son with special needs, Joey, 29, who still lives at home and provides daily smiles.  She is a regular ShareWIK.com columnist.  To find out more about Cindi, visit her website: www.cindiferrini.com

 

Read other Cindi Ferrini columns here. 

 

©2011 ShareWIK Media Group, LLC

Returning to my seat at the airport gate, my husband, Joe motioned for me to observe the three people sitting just in front of us. Their backs were to us, so I didn’t immediately see what he was trying to show me. 

 

“Just watch, I’ll be right back,” he said, quietly.  


Within moments, a 45 to 50 year old man with special needs began talking to an elderly couple who were, more than likely, his parents.  The son stood and wobbled away with mom following after him.


It hit me hard: this was Joey, my special needs son, my husband, Joe and I in 15 to 20 years.  It was intriguing. It was sad. It was hard. It was educational. It made the future seem all too real.


The son obviously had difficulty speaking and making his needs known, but what intrigued me more was how little conversation there was between the parents. They did not look at each other. They may have shared four words. They seemed quiet, sad, and burdened. I don’t want to be judgmental, because they may have been tired after a full day of traveling, or perhaps they were sadly taking their son to a group home where they might never see him again, or perhaps they had said everything they needed to say over the course of these many years of caring. I just know the people I saw looked sad.


Scenarios like this nudge me to be intentional as I live out the days I’m given with our son. I want each day to be lived with fullness, joy, in fun, and yet in the reality that there are “those days” of challenge and frustration, too! I want to live each day that way so when we reach that end stage of life, we can have joy and fullness and fun then, too. I want to embrace life and look for the benefits. IF we do that, we’ll look for ways to appreciate all aspects of life. 


When I think over the past (almost) 30 years of caring for our son, I’m reminded of the many wonderful things we’ve learned and experienced that one can’t know until there further into the journey…..


ü We’ve relied on God, not ourselves, in our challenging situations

ü Learned our weaknesses and who we were in the midst of them

ü Was clearly able to determine what was realistic about life, what was important, and what to let go – coming to recognize the privilege of serving our loved one

ü Learned discipline helping our son develop routines to deal with constant and unending challenges

ü Developed flexibility in our attitudes and in daily adjustments, making quick changes often

ü Watched our son overcome obstacles that our other children and children around us found very simple

ü There have been many wonderful people we’d never have met had we not taken this journey

ü Have learned to see the value in every life, not the length or quality of life but its value

ü And so much more…….


So instead of trying to fast forward the time I have, I’ll excuse myself and go pop that bowl of popcorn the three of us will share – watching the sports game my son so enjoys!


Here’s to the present!


Cindi Ferrini is the co-author of “Unexpected Journey: When Special Needs Change Our Course,” and “Get It Together,” as well as a popular conference speaker, artist and mother of three grown children, including a son with special needs, Joey, 29, who still lives at home and provides daily smiles.  She is a regular ShareWIK.com columnist.  To find out more about Cindi, visit her website: www.cindiferrini.com

 

Read other Cindi Ferrini columns here. 

 

©2011 ShareWIK Media Group, LLC

As many of us embrace February for the “love” factor, I’d like to spur our thoughts in the direction of what we do to make “love” happen – especially in the framework of those whose lives are often dismissed, ignored, disregarded, neglected, slighted, snubbed – those with special needs.

 

Perhaps like me, you have missed the opportunity to show compassion or love to someone simply because they have special needs.  Or maybe you don’t know how to connect with them. Perhaps you have no idea how to engage in conversation with them or their caregivers – no idea how to, well, walk a mile in their shoes!

 

When our son was a few years old, my husband expressed his fear and disappointment regarding the handicaps and challenges that were a part of our every day existence to a close friend.  He also expressed his concern about our relationship and for caring for our son.  It wasn’t easy for him to share his heart, but he did so through tears, only to hear the cutting words of the listener, “I thought you were tougher than that.”  

 

That was the last time he shared anything about our son with that person, and for that matter, anyone for many, many years. 

 

If we truly walked a mile in other peoples’ shoes, we’d quickly understand what they have to deal with. We’d become aware of the hot button issues that tick them off, and we’d become sensitive to what makes them tick. We wouldn’t have all the answers.

 

My husband and I wished we could have had people to talk to when our son was small.  The people we reached out to were probably not equipped to mentor or help us. For that reason, we desire to mentor couples with young children, to listen to their challenges, to cry with them, and to encourage them.  Sometimes listening to their struggles is difficult because we relive in our minds the complexities of our early years; however, the positive outcome is that with the help of the Lord in our lives, we make it; and in turn we can give them help and encouragement to make it too.

 

Every time we feel as if we want to quit, we remember that we are called to this purpose and that God did not make a mistake. Maybe we can help others who have a similar life situation as we do but who are a few steps behind us in their journey, or perhaps we can simply be one who’ll provide a listening ear if we are not in the same life situation. We just need to be willing. Willing to extend the love and compassion that person needs for the moment.

 

Ask yourself:

 

Am I willing to be a listener to someone who has a challenge different than my own?
What would it take for me to approach someone with special needs (and/or their caregiver) and ask how I might help or pray for them this day?


Might I offer to assist in a “caring” capacity at church by watching a child with special needs (thus allowing the parents a time of uninterrupted time to sit in church together?)


Take a moment to observe what you see. What must their lives be like? Sit quietly and contemplate how you would “do” your life, given what you are observing. Then take a moment to contemplate the things you aren’t seeing (meal times, bath routines, temper tantrums, sleepless night, medical issues, etc.)

 

Remember that their work is not 9 to 5 but 24/7. We might just provide them with the love and compassion they need to keep them going…all because we took some time to WALK A MILE IN THEIR SHOES. 

 

Cindi Ferrini is the co-author of “Unexpected Journey: When Special Needs Change Our Course,” and “Get It Together,” as well as a popular conference speaker, artist and mother of three grown children, including a son with special needs, Joey, 29, who still lives at home and provides daily smiles.  She is a regular ShareWIK.com columnist.  To find out more about Cindi, visit her website: www.cindiferrini.com

 

Read other Cindi Ferrini columns here. 

 

©2011 ShareWIK Media Group, LLC

Friends of ours in an Asian land shared a very interesting thought: “People here love rice, but because of the shortage of land, someone developed a way to grow rice underground. Somewhere under the world’s largest city, they grow rice. Initially, the rice did not have much flavor. The reason, they discovered, was because the rice was not exposed to the elements outside – the scorching heat, the strong winds, and the summer downpours. So they began to simulate the weather outside. No matter what we might be going through right now, the heat and wind have a purpose – to make us ‘tastier!’”

 

Isn’t that interesting? Most of us want life to be easy, comfortable, happy and without a lot of effort! Yet, what makes us more useful and “tastier,” if you will, is when the “elements” of life have their way with us.

All of us will be “called” to overcome, endure, or work through some very challenging situation(s) at some point in our life.  For some, the duration from start to finish will vary. We’d all love for our challenge to be short-lived. 

Our life challenge is now almost 30 years old!

Raising a child with special needs (mental retardation, cerebral palsy, epilepsy, and some severe/fatal allergies) demands of us 24/7 attention and focus. It has required I make it a full-time job without financial reward: finding services, jobs, doctors, specialists, etc. It often brings us to our limit of patience. It tends to be one reason for a divorce rate of greater than 85% in this group labeled “special needs families”. It has made me mad, strong, sad, happy, frustrated, joyous, and in the end, always thankful.  

Many days are hard.

When a typical child is ill for nights on end, it is draining.  But when special needs are added to the mix, it can be a different type of challenge. Children who can’t talk can’t share their pain or needs. Maybe they can’t even roll over or get to where they need to go to be sick. Maybe they need a diaper changed and they’re a teen. This is just one avenue of hardship – others include:

·         Family members who don’t understand and don’t take the time to understand or learn what our journey truly consists of

·         Dealing with agencies, the law, schools, workshops, etc.

·         Hours of study to find places our child will thrive

·         Hours of phone calling and travel to get what we know they need

·         …And knowing they will never be able to do any of this on their own.

The hardships really don’t end.

And while that is true, over and above the hardships are the joys. The scorching heat of hardship allows us to learn lessons we wouldn’t otherwise learn, and if we weather those hardships, we can become an example for others.

For me, I’ve sensed the hand of God working in my life through the challenges I’ve experienced. When sadness and disappointment come to us like a strong wind, we can recognize that God has a purpose for all the things He brings into our lives - just what we need to grow and well, become “tastier.” God isn’t a crutch but a comforter. He doesn’t comfort us to make us comfortable but to make us comforters.

In turn, I comfort and mentor younger moms challenged as I have been - helping them see the broader scope – the bigger picture: maybe this is about what we will learn, how we will grow, how we will love. If God stood before me and offered to heal my son, I’d probably say no. WHY?  Because I’ve learned that from the hardships have come much good:

·         God knows what’s best for us in all ways - we just need to listen and learn

·         That it was a blessing that I didn’t have to work, thus being able to help my child on a full time basis; I was healthy to do what was needed; I was able so I could also be willing; we worked hard to have a good marriage and it’s been worth it

·         The many challenges and life lessons that have made me stronger

·         That there are many wonderful people traveling down the same road as we are – giving, loving, kind and generous people who sacrifice their lives to make another life better, and they’ve impacted my life for the better

·         That as others (and the Lord) have comfort me, I’ve been able to comfort others in return

I think hardships are good, and I’ll be satisfied to stick with the ones I have. 

 

Cindi Ferrini is the co-author of “Unexpected Journey: When Special Needs Change Our Course,” and “Get It Together,” as well as a popular conference speaker, artist and mother of three grown children, including a son with special needs, Joey, 29, who still lives at home and provides daily smiles.  She is a regular ShareWIK.com columnist.  To find out more about Cindi, visit her website: www.cindiferrini.com

 

Read other Cindi Ferrini columns here. 

 

©2011 ShareWIK Media Group, LLC

Get a LIFE!

I’m often tempted to say that! I want to say that when:

  • When things aren’t going my way I think, “Wow, if I could just get a life!”
  • When frustrated, I sometimes say, “This is life?”
  • As a young mom changing diapers I’d catch myself thinking, “This is not what I thought children were going to be all about. I wonder when I’ll get a life.”
  • When our son wasn’t developing on schedule and we’d be doing the same therapy for the trillionth time, I’d sometimes say, “I just wish someday he’d get this, and get a life.”
  • When others don’t get in line with our wishes we sometime say, “I wish they would get a life!”

I guess it’s true that the grass is greener in someone else’s yard, but do you ever feel stuck in yours?

It would be such fun to be able to pick up and take off – to the other side of town for dinner - without calling on someone to care for our 29-year-old with special needs. It’s not an easy task to find someone to “fill that bill.” A teenage (boy or girl) would not be appropriate to watch our grown son. A “service” to bring a stranger to care for our son (who would not be able to tell us if anything went wrong), is not a comfortable option.

I’d love to be able to travel with my husband like we had dreamed when we were younger. But if a night out is hard to accomplish, a week is not much easier. And it would be such a treat to say “yes” to friends who are going to see a movie or go to a play – last minute!

Oh…If I could just “Get a LIFE!”

But, while the grass is often greener on the other side, I face the fact that life is different for us than for some of those around us and that we have choices to make. And for us (and you) choosing what we feel is right means choosing what we value. It’s that simple and it’s that complicated.

In our society we want to fix things so life is not interrupted or inconvenienced. If we could take a pill to make everything perfect, we would. Because no pill can cure us from challenges and struggles, we have to decide what we value because that’s how we’ll decide what we’ll do. For us the reality and choice was valuing and caring for our son, and the knowledge that doing so would last a lifetime - either his or ours.

So how does that look today? As a woman who now has grown children and one grandchild, I thought I’d have outgrown this saying, but sometimes I find myself seeing others in retirement doing what we’d hoped, and hear myself saying, “I wish I could get a life!” But on good days – and most of them are, I realize that all of us have times when things don’t go our way, and we all have to “grow up” and learn to go with the flow. I occasionally get frustrated, or feel sorry for myself, but see many of my friends do too - their frustrations are just a different flavor. And, we all look back on those mundane days of childrearing - doing the same thing over and over again with much fondness, and sometimes with a secret wish to return to or re-do a few of them!

I realize I do have a life. It’s one that includes caring for our son who has brought so much to our marriage, family and life. It’s about being tethered to home more than we thought we would, but being able to look out over our beautiful wooded back yard and say, “I’m pretending to be on vacation today,” while reading a book and sipping my Café Vienna, or actually traveling somewhere but keeping in mind the pace will be very slow with Joey at our side. It’s about being thankful for a sweet handful of family and friends who stand in the gap to care for our son when we have opportunities to speak at conferences or for ministry. It’s about recognizing we’ve met wonderful people that we wouldn’t have, had Joey not been given to us. It’s a romantic dinner for three, which still means I don’t have to cook!

Yes, I’ve come to realize that while we all want to “get a life,” we wind up finding that the phrase just needs to be reworked: “This IS our life!”And it’s really pretty special.


Cindi Ferrini is the co-author of “Unexpected Journey: When Special Needs Change Our Course,” and “Get It Together,” as well as a popular conference speaker, artist and the mother of three grown children, including a son with special needs, Joey, 29, who still lives at home and provides daily smiles. She is a regular ShareWIK.com columnist. To find out more about Cindi, visit her website: www.cindiferrini.com.

Read other Cindi Ferrini columns here. 

 

©2011 ShareWIK Media Group, LLC

A friend of ours in an Asian land shared a very interesting thought: “People here love rice, but because of the shortage of land, someone developed a way to grow rice underground. Somewhere under the world’s largest city, they grow rice.   
Initially, the rice did not have much flavor,” our friend said. 

“The reason, they discovered, was because the rice was not exposed to the elements outside – the scorching heat, the strong winds, and the summer downpours. So they began to simulate the weather outside. No matter what we might be going through right now, the heat and wind have a purpose – to make us ‘tastier!’”
 
Isn’t that interesting? In making a correlation to my own life, I can say that most of us want life to be easy, comfortable, happy and without a lot of effort! Yet, what makes us more useful and “tastier” if you will, is when the “elements” of life have their way with us.
 
It will happen to all of us – being “called” to overcome, endure, or work through some very challenging situation(s) at some time in our life. For some, the duration from start to finish will vary. We’d all love for our challenge to be short-lived; but in our challenge, although equally our joy, is now almost 30 years old!
 
Raising a child with special needs (mental retardation, cerebral palsy, epilepsy, and some severe/fatal allergies) demands of us 24/7 attention and focus. It has required of me to make it a full time job without financial reward: finding services, jobs, doctors, specialists, etc.
 
It often brings us to our limit of patience. It tends to be one reason for a divorce rate of greater than 85 percent in this group labeled “special needs families”. It has made me mad, strong, sad, happy, frustrated, joyous, and in the end, always thankful. But, many days are hard.
 
Nights on end when a typical child is ill are draining, but when special needs are added to the mix, it can be a different type of challenge. Children who can’t talk can’t share their pain or needs. Maybe they can’t even roll over or get to where they need to go to be sick. Maybe they need a diaper changed and they’re a teen. This is just one avenue of hardship – others include:

  • family members who don’t understand and don’t take the time to understand or learn the reality of our journey 
  • dealing with agencies, the law, schools, workshops, etc.
  • hours of study to find places our child will thrive
  • hours of phone calling and travel to get what we know they need
  • …and knowing they will never be able to do any of this on their own.

 
The hardships really don’t end.
 
And while that is true, over and above the hardships are the joys. The scorching heat of hardship allows us to learn lessons we wouldn’t otherwise learn, and if we weather those hardships, we can become an example to others.
 
For me, I’ve sensed the hand of God working in my life through the challenges we experienced. When sadness and disappointment come to us like a strong wind, we can recognize that God has a purpose for all the things He brings into our lives - just what we need to grow and well, become “tastier.” God isn’t a crutch but a comforter. He doesn’t comfort us to make us comfortable but to make us comforters.
 
In turn, I comfort and mentor younger moms challenged as I have been - helping them see the broader scope – the bigger picture.
 
Maybe this is about what we will learn, how we will grow, how we will love. If God stood before me and offered to heal my son, I’d probably say no. Why?  Because I’ve learned that from the hardships have come much good:


  • God knows what’s best for us in all ways - we just need to listen and learn
  • that it was a blessing that I didn’t have to work, thus being able to help my child on a full time basis. I was healthy to do what was needed; I was able so I could also be willing; we worked hard to have a good marriage and it’s been worth it
  • the many challenges and life lessons that have made me stronger
  • that there are many wonderful people traveling down the same road as we are – giving, loving, kind and generous people who sacrifice their lives to make another life better, and they’ve impacted my life for the better
  • that as others (and the Lord) have comfort me, I’ve been able to comfort others in return
 
I think hardships are good, and I’ll be satisfied to stick with the ones I have.

Cindi Ferrini is the co-author of “Unexpected Journey: When Special Needs Change Our Course,” and “Get It Together,” as well as a popular conference speaker, artist and the mother of three grown children, including a son with special needs, Joey, 29, who still lives at home and provides daily smiles. She is a regular ShareWIK.com columnist. To find out more about Cindi, visit her website: www.cindiferrini.com.

 

Read other Cindi Ferrini columns here. 

 

©2011 ShareWIK Media Group, LLC

It’s been a while since we all came to know Susan Boyle who auditioned for the “Britain’s Got Talent” show.


The surprise of it all.  How did YOU respond?


I couldn’t help, initially, feeling sorry for her – first because she didn’t look the part all of us were expecting; then because she had to listen to the jeering and sneering of the unforgiving crowd and judges – how impolite, rude and mean. She certainly didn’t look like she’d be able to sing like she could. She wasn’t even given the chance to prove herself before the laughing and jesting began. Certainly she showed us all what she had to offer. I was personally happy to hear the judges make an apology for how they and the audience misperceived her!


We now have finalists for American Idol.


Each contestant has their own unique mark as a person and as a performer. Just like with Susan Boyle, we’ll express our opinions, criticisms, and judgments as each contestant does their thing. One finalist has special needs - diagnosed with Tourettes and Asperger’s – do you know which contestant that is? If you’re not one to watch that show, it might do your heart good to look up these diagnoses and discover what this contestant is really all about and what he is overcoming before you judge that book by its cover.


Just recently someone called to tell me of a young special needs pre-teen being teased by classmates. They were concerned about the bullying and negative comments and how their child would ever be able to rise above all the hurtful things people were saying. Upon my request, they proceeded to tell me some of the wonderful attributes their child with special needs has: kind, forgiving, patient (most of the time), never desiring or thinking of getting even, and so on. It’s too bad, isn’t it, that while this child can’t read, do math, or speak very well, they have such redeeming qualities that would rival those bullying. Might you, I, or those bullies wonder what this young person has to offer that others aren’t taking the time to notice? 


As we watch American Idol this season, it’s my hope that we’ll take notice of one young person overcoming some pretty amazing odds. I also hope we’ll look around us to see how we can appropriately respond to others who are different than we are, taking the time to learn what they have to offer before passing judgment or being critical. Here are some thoughts to consider and questions to ask ourselves about others with “special differences”:


·      How will we respond the next time someone different from us comes across our path?


·      What are the redeeming qualities this person possesses?


·      Can we find something worthwhile this person does or is that will help us see them differently or better?


·      How can we encourage this special person, no matter their abilities, for them to become all they can be?


·      Let’s be an example for others to follow by not pointing, teasing, and otherwise making fun of those who are different from us.


·      Hopefully we can use positive and encouraging words to move this person to succeeding to the best of their abilities.


·      May we refrain from jeering and sneering, which is rude, mean, insensitive, and impolite.


·      Open our hearts to looking for the positive character traits one possesses rather than the abilities they are lacking.


·      Matthew 7:1: “Do not judge lest you be judged yourselves.” That sums it up!


Remember: we can’t judge a book by its cover – and shouldn’t.

 

Cindi Ferrini is the co-author of “Unexpected Journey: When Special Needs Change Our Course,” and “Get It Together,” as well as a popular conference speaker, artist and the mother of three grown children, including a son with special needs, Joey, 29, who still lives at home and provides daily smiles. She is a regular ShareWIK.com columnist. To find out more about Cindi, visit her website: www.cindiferrini.com.

 

Read other Cindi Ferrini columns here. 

 

©2011 ShareWIK Media Group, LLC

 

A group of women in their 60’s and 70’s were reported to be preparing to run a marathon. I immediately had two reactions. The first one was that these women were not youngsters. The second was … a marathon?

 

I’m not a runner, so the very thought of any kind of running competition is not appealing to me. But when I think of the time one must invest to prepare for this kind of event – that is really impressive. Whether some were in it to win, better their previous time, or simply complete the event – it’s still very impressive. The time it takes to train, the stamina, and certainly the desire to see it through is remarkable. Additionally, they likely did not just start running marathons at this age; it was probably something they have been doing for a very long time - a way of life if you will. We should not be surprised that they are still able to do what they have practiced for years.

 

I’m a “marathoner” of sorts. I run a race every day that many others probably couldn’t do – not because they wouldn’t be able – but because they haven’t be in training. I care for a son with special needs. Everything I need to do for me, I do for him, as well. I’m hoping to stay in this race until I’m old. But I know in order to do that, I need to keep practicing my skills.

 

My husband and I have often been told that we make it look “easy.” What comes easily is how much we love our son – caring for him is just second nature. When one makes the choice to do the right thing, rather than what is easy, comfortable, and fun, and when accompanied with cheerfulness and a good attitude, we can see that the training can be productive. But it does takes stamina, perseverance, dedication, patience, suffering, and a few other things – all of which are developed over time – much like the training of an athlete.

 

As an athlete trains daily, we practice doing what we need to do. As an athlete makes sacrifices to train his or her body to work a certain way, those caring for the needs of others clearly give up a great deal in order to make what they do look easy. They sacrifice their own time, treasures, and talents to be able to do what they feel they are being called to do. An athlete needs to stop and rest to be able to get back in the race, but for our marathon, it’s 24/7. While we’d like to take a day off, unless we plan for someone else to take over our responsibility, there is none. Sometimes the length of this marathon can get tiresome! Some days are weary. Sure, there are breaks and rests, but not always in the way we’d have planned them.

 

We treat this race in such a way so that we are prepared for the long haul – the marathon. For us that has meant:

·     S-- Surrounding ourselves with positive people

·     R-- Relying on those who are willing to help – so we can rest and get refreshed

·     T-- Making mini dates together since a two-week trip away isn’t always possible

·     E-- Enjoying friends and family with times of laughter to brighten up life!

·     T-- Taking walks

·     E-- Enjoying hobbies (for me, it’s watercolor painting)

·     W-- Matching a good movie at home (and if the situation arises)

·     R-- Reading a good book

·     Of-- Offering to let our spouse sleep in on those blissful but few occasions!

 

I challenge you to think about the marathon in your life. What would you put on your list?

 

With these “helps” for my marathon of life, I can be in it to win it and maybe even better my time.  But the true and simple reality is this: I just want to complete the race – well. 

 

Cindi Ferrini is the co-author of “Unexpected Journey: When Special Needs Change Our Course,” and “Get It Together,” as well as a popular conference speaker, artist and the mother of three grown children, including a son with special needs, Joey, 29, who still lives at home and provides daily smiles. She is a regular ShareWIK.com columnist. To find out more about Cindi, visit her website: www.cindiferrini.com.

 

Read other Cindi Ferrini columns here. 

 

©2011 ShareWIK Media Group, LLC

 

 

As couples plan, prepare and approach their weddings, there is much anticipation of the wonderful and festive day and a life of “they lived happily ever after.” Couples exchange vows: “For better or worse, for richer or poorer, in sickness and in health, to love and to cherish until death do us part.” But when a couple says those words on their wedding day, there are probably few who would be prepared for the “worse, poorer, sickness” parts.

 

Our early life and marriage flowed rather nicely. Maybe you see your life as we did ours. We knew what stages came when. For instance, when we were dating, we knew the next logical step was marriage, then children, building a career, participation in their school and activities, and eventually sending them off into adulthood to repeat the normal healthy process. But as it is for most of us, we don’t plan on things entering our life that will change it profoundly from one moment to the next.

 

Life for us turned out to be a bit like putting money in a vending machine - expecting the piece of candy whose button we pushed. The problem was: we got a different candy bar. Sure, we like this one OK, but it wasn’t exactly the flavor we expected, nor the size we chose. And, come to think of it, one of us liked the nuts; the other didn’t. Kicking the machine to see if what we wanted would eventually come out wasn’t an option. Plus, what would we do with the one we had?

 

In real life, the surprise (life-changing moment) might be the addition of children, a grave diagnosis or health issue, or like it happened for us – a child with multiple special needs. Life is changed forever sometimes by one situation that will ultimately re-define the couple and that relationship.

 

Whether hoping for a particular candy bar or some other hopeful outcome, when the deal doesn’t deliver, we are disappointed. But when there is a change for what life might have been, we can be devastated. Disappointment can last a few moments with few short-lived side effects (a wrong candy bar), but devastation might happen in a moment and have a lasting impact when life is changed in a way that it will never be the same. How we adjust, deal with the devastation and look at life will ultimately make a difference in how we make it through life.

 

Will we:

 

·      Concentrate on what we don’t have or begin to see the beauty of the situation in a new and different way?

·      WWillll we concentrate on what others have, what others get to do, where others get to go or will be learn to be satisfied in our place in life?

·      Will we see our dreams as unfulfilled or simply filled in a different way?

·      Will we see the difficult little things, or the overall big picture that reveals a beautiful story?

·      Will we select one instrument in the orchestra and listen to it alone, possibly able to hear a few mistakes, or open our minds to the beautiful sound that all the instruments together will make under the direction of the conductor?

 

We have the choice to make, and the earlier the better, as the Plan is seldom the Plan!

 

©Cindi Ferrini used with permission from UNEXPECTED JOURNEY

Cindi Ferrini is the co-author of “Unexpected Journey: When Special Needs Change Our Course,” and “Get It Together,” as well as a popular conference speaker, artist and mother of three grown children, including a son with special needs, Joey, 29, who still lives at home and provides daily smiles.  She is a regular ShareWIK.com columnist.  To find out more about Cindi, visit her website: www.cindiferrini.com

 

Read other Cindi Ferrini columns here. 

 

©2011 ShareWIK Media Group, LLC

 

 

My mother-in-law needed heart surgery. We went together to the doctor to make sure all her questions were answered. We wanted to know why she needed the surgery and how it would affect her afterwards. We wanted Mom to know exactly what to expect from start to finish. The doctor described everything to her and said, “When you wake up, you’ll feel like a truck hit you, but each day you’ll do better and better and heal well. After surgery, I asked mom how she felt and she replied, “The doctor said I’d wake up and feel like I was hit by a truck. That’s true, I do, but we failed to ask what size truck it would be!”

That is reality! Reality is sometimes a shock.

Sometimes we just don’t know what hit us, and we can’t anticipate what the outcome will be when we don’t know what is then ahead of us. In her case, healing took time, but eventually she experienced better health and better qual­ity of life.

When caring for someone with special needs, operations and medications will often improve health or quality of life but not cure the individual or change the course of that person’s life to make her or him what we’d call “normal.” The re­ality in this case is summarized in this question: Will we be able to run the race set before us or crumble under the weight of this responsibility for a lifetime?

It doesn’t matter who we are—rich or poor, healthy or unhealthy, good looking or not, well-dressed or shabby, happy or sad, motivated or unmotivated, talented or untalented. When God wants to do something in and through our life, look out! That’s when reality hits!

As a mom, the reality for me is the day-to-day grind of life and the realization that we have no con­trol over it, and that nothing will ever be the same. That part of life we didn’t see coming our way. That part of life, when it hits, we wish hadn’t—if we’re truly honest. If we are open to learning, it’s in that reality where God will give us new vision - a bigger picture as we walk through the tests and the storms that challenge us. Until we are willing to become active learning partic­ipants, we flounder, trying to figure out what’s going on.

It was the reality of caring for our son, and the knowledge that doing so would last a lifetime—either his or ours! Our son has learned and grown, but the pace was so slow that we often wondered if anything new was taking place. Reality is never what we expect. No matter what the reality looks like, it is likely a surprise. And what one of us would have chosen it?

What I’ve learned with each new reality, is that listening to God, my heart, and taking time to learn what will be needed, will eventually help me sort things out. I’ll learn, I’ll grow, and somewhere down the road of this journey, I’ll have a new level of understanding of life because I’ve embraced my new reality. Is it easy? Never. Is it worth it? Always! That’s reality!



Cindi Ferrini is the co-author of “Unexpected Journey: When Special Needs Change Our Course,” and “Get It Together,” as well as a popular conference speaker, artist and mother of three grown children, including a son with special needs, Joey, 29, who still lives at home and provides daily smiles.  She is a regular ShareWIK.com columnist To find out more about Cindi, visit her website: www.cindiferrini.com

 

Read other Cindi Ferrini columns here.

 

 

©2011 ShareWIK Media Group, LLC

 

 

 

When a caregiver is on call 24/7 every day, getting away without interruption seldom occurs, so when an opportunity arises, we say, “take it!” Every married couple needs time alone, time to focus on each other, time to rejuvenate. When a person with special needs is involved, that opportunity is harder to find. You can’t just pick up and take off—ever, without involving and including others to help make it happen.

Everyone has different options and choices. We were blessed in the early years of caring with a child with special needs with time away to be alone. The grandparents were willing and able to care for Joey, so we tried to use that time for us whenever we could. Not all couples will have this particular option, so before you stop reading and say, “This doesn’t work for us,” realize that some of us might need to be more creative than others in getting what we need. If we don’t try to figure out ways to make things work for us, it is doubtful that some stranger will approach us and say, “Perhaps I can help.” Creativity and flexibility must stay high on our list as we work through taking care of our marriage, and all of life.

We might want a week away but need to settle for three hours. We might want a trip to Europe but need to be content with an overnight stay in an adjacent city. We need to find ways that will work practically and financially.

For us, pampering our marriage ranged from staying home and going to bed together early when the grandparents took the children overnight, to a weekend away 45 minutes from home, to a nice 12-day vacation out of the country. We liked the out-of-the-country pampering the best because short of an emergency, no one would call us. Selfish, you say? Perhaps for some, but for oth­ers it’s self-preservation.

When we had just the two children, we had a chance to take a cruise, not even a business or ministry-related trip, just pure fun! If memory serves us correctly, it was the first or maybe second trip we’d taken alone since having children. Someone had said to us, “That must be nice. I wish we could do that.” Perhaps our response should have been “Oh, thank you so much for sharing in our joy” and might have been, had the comment not been made in a condescending tone that we heard as “It must be nice to leave your kids and go off on a trip alone.” We smiled and said something about looking forward to it.

If your enjoyment comes from playing golf, diligently search for someone who can handle the responsibilities of spe­cial needs long enough to get to the golf course to play nine holes! (Be happy with nine even though 18 sounds better!) Of course, some of us then need to learn how to relax once we’re on the course! If not golf, then perhaps running, swim­ming, or taking a dance or foreign lan­guage class will give a couple the sense of enjoyment and rejuvenation that will allow the pair to go back home to life as usual. We can’t do life as usual for very long without some kind of relief from the pressures of caring for another’s full-time needs. Whatever you do, pamper that marriage!

 

Cindi Ferrini is the co-author of “Unexpected Journey: When Special Needs Change Our Course,” and “Get It Together,” as well as a popular conference speaker, artist and mother of three grown children, including a son with special needs, Joey, 29, who still lives at home and provides daily smiles.  She is a regular ShareWIK.com columnist. To find out more about Cindi, visit her website: www.cindiferrini.com

 

Read other Cindi Ferrini columns here.

 

 

©2011 ShareWIK Media Group, LLC

 

 

We’re all experts of sorts. Each of us is given something in life that challenges, stretches and stresses us and will eventually qualify us as some sort of expert. If you’re like me, whatever that area is, it’s not the area you’d have chosen to become the expert.

never thought “this” would be my life, never knew anyone to ask for “this”, wouldn’t have voluntarily been in line for it, and I’ve never known anyone to say they hope their child would have it, either. But somewhere in the lot of life - some 1/4 of our population - has been given this challenge and as a result, have become somewhat of an expert.

The challenge? Raising a child and/or caring full time for someone with special needs. The bigger obstacle - helping others understand!

What makes caring for our son, Joey, our ultimate challenge is that it continues every day, every moment, with no vacation from the 24/7 responsibility we’ve been given. While we’ve been weary, exhausted, frustrated, overwhelmed, and disappointed, there is another side to this story. We’ve lived to share about it! Our son Joey is a great gift and amazing blessing - but he came to us with things we knew nothing about: mental retardation, cerebral palsy, epilepsy, and many severe food allergies that could be fatal.

Because we were on a big learning curve, we appreciated advice - taking from others what worked and leaving the rest. Others didn’t need to know if we tried it or not. We’d listen, say, “Thank you” (for advice we might try) or, “That’s interesting” (for advice we needed to really think about)!

Having had the opportunity to hear a lot of “expert” advice over the 29 years of raising my son, here are some things I’d like to offer as my own “expert” advice to the many wonderful people who will come in contact with a special needs person and/or their family at some time in their lives:

*  Think twice before offering or suggesting a miracle cure to parents or caregivers – they’ve heard most everything (and probably investigated it). It can be frustrating trying to explain that it won’t work in our case.

*  Refrain from telling us how we should feel or what we should do unless you’ve helped us more than a few days and actually know what you’re talking about. (Most people who’ve not cared for a special needs person 24/7 have no idea what is involved. What makes us the “experts” is that we make it look easy because we do it all the time…..all the time…..) Watching someone for an afternoon is a great and appreciated break for a caregiver, but it’s not the same as doing it all the time….

*  Ask questions, offer help, show concern - before offering advice. 

*  If you can’t understand the child (or adult), ask for help. THANK YOU for making the effort to speak with them!

*  An individual with special needs often says things we wish we could, but we’d never get away with it….be patient with them.

*  When waiting for a response to your comment or question, give them time to respond. Counting to 10 to yourself before repeating your question or starting another thought pattern allows them the needed time it takes for their brain to formulate thoughts. (Something, by the way, many of us could learn from - and I still am!) 

*  Don’t shout. Deaf people won’t hear us if we shout and a person who is mentally slow won’t understand us any better. Look to (and even ask) the caregiver for clues if you’re not sure how to respond. Lowering the volume, speed, and tone is what I’d suggest, until you get a feel for the situation. 

*  “I feel like such a retard” is not a positive comment anyway you look at it. It’s especially hurtful to those caring for someone who is. If you say it and catch yourself, a simple apology is better than saying nothing and moving on. While we’ll pretend not hear it - we did.

*  Using a word like see with a blind person, hear with a deaf person, or walk or run with someone in a wheelchair is usually not something to worry about if you are using it in general conversation. EXAMPLE: Saying, ”I see” for “I understand” to a blind person is normal conversation. 

*  Feel free to ask the person with special needs to repeat themselves. As the caregiver, I understand most of what my son is saying, but many people can’t. If you can’t find resolve, gently move to another subject without disregarding the individual. And if you need to end the conversation, politely say something like, “It was great visiting with you. I hope to see you again soon,” rather than just walking away.

*  Ask one question at a time and wait patiently for the answer. Count to 10 again. That rule is always helpful.

*  When speaking to a deaf person who has an interpreter, make eye contact with the deaf person.

*  When conversing with a blind person, don’t “make friends” with their Seeing Eye dog. Don’t pet, offer a treat or otherwise distract the dog from the job for which it has been trained.

*  If you’re able to stoop down to face someone in a wheelchair, that’s polite and helpful. 

*  Stay positive and pleasant. It helps everyone in those awkward moments.

*  Don’t correct the person unless you are sure they understand what you are trying to say and “check” what your motivation is for doing so. Their thinking patterns and abilities don’t always make sense to “outsiders” let alone their caregivers! We’ve learned it’s not about being right but about hearing the individual.

 

Cindi Ferrini is the co-author of “Unexpected Journey: When Special Needs Change Our Course,” and “Get It Together,”as well as a popular conference speaker, artist and mother of three grown children, including a son with special needs, Joey, 29, who still lives at home and provides daily smiles.  She is a regular ShareWIK.com columnist.  To find out more about Cindi, visit her website: www.cindiferrini.com

 

©2011 ShareWIK Media Group, LLC

Your child has “special needs.” You never thought it could happen to you, you never wanted it, you never asked for it…but you suspected it and now it’s confirmed.

Now, what?

Someone you love survived an accident, but they’ll never walk again. Those things happen to others, but now it’s happened to someone you know and love. You would never wish this upon anyone - but it happened.

Now, what?

You feel like you’ve been punched in the stomach - unable to catch your breath. You can’t think, you can’t talk about it, and if you’re one who prays - you might not even be able to pray. You know life will never be the same - and it won’t. It will take a while (and it’s different for each person), but when the shock of this new reality sinks in, you’ll realize there are many with whom you can now relate. In the United States (according to the Disability Information and statistics via Joni and Friends):

·         54 million) people (20.6%) are living with some sort of disability

·         26 million people have some level of severe disability

·         9 million people are disabled to the point of needing personal assistance for everyday activities:           

o   1.6 million use wheelchairs

o   4.8 million use canes

o   1.8 million use walkers

o   4.2 million use hearing aides

o   1.7 million use back braces

·         Of those with disabilities:

o   6.1% are under 18

o   6.9% between 18-24

o   14.1% between 25-54

o   28.4% between 55-65

o   38% over 65

o   56% over 85

·         Some 19 million people who are defined as severely disabled do not use a wheelchair, cane, crutches, or walkers.

With such statistics, we must recognize that what we thought would never happen to us or to someone in our life, probably will. Whether it’s ADD (Attention Deficit Disorder), mental retardation, Alzheimer’s, autism, Down syndrome, spinal cord or brain injury, Muscular Dystrophy, sensory integration, spina-bifida, or some other special need, it is likely that someone you know, or you, will be affected.

Now, what?

Like anything else in life, the “now what” is easy to hear; harder to apply. Here are some things you can do if:

The Special Needs Situation Involves Someone Else:

·         Look around – become aware of those around you and their needs…

·         Learn to show compassion to others – you will grow as you become aware.

·         Offer help when you’re able – you will learn as you serve.

·         Read about the disabilities of those people in your life who have the challenge of a special need. Read like you would if it were your disability – they will be blessed and impressed that you cared.

·         Ask questions and send kind notes of encouragement to them. They are seldom asked about their situation and rarely get encouragement outside their families.

The Special Needs Situation Involves Yourself or Your Loved One:

·         Take time to evaluate the diagnosis, your feelings, your loved ones feelings, and discuss it.  Don’t run and hide, even though you might want to.

·         Ask questions. Get answers. Talk to doctors, therapists, social workers, agencies, others in your situation, etc.

·         Find sources of resourceful help. It takes time.

·         Share with others as you are able. Share what you are comfortable with.

·         Realize you will probably follow the Elizabeth Kubler-Ross stages of grief:

Denial - “This isn’t happening to me.”

Anger – “Why is this happening to me?”

Bargaining – “I promise I’ll be a better person if ______.”

Depression – “I don’t care anymore.”

Acceptance – “I’m ready for whatever comes.”

 

Both places are basic starting points. The journey takes perseverance, stamina, energy, endurance….and time.  Are you willing to ask yourself the question: “Now what”?

 

Used by permission from “Unexpected Journey: When Special Needs Change Our Course,” by Joe and Cindi Ferrini. 

 

Cindi Ferrini is the co-author of “Unexpected Journey: When Special Needs Change Our Course,” and “Get It Together,” as well as a popular conference speaker, artist and mother of three grown children, including a son with special needs, Joey, 29, who still lives at home and provides daily smiles.  She is a regular ShareWIK.com columnist.  To find out more about Cindi, visit her website: www.cindiferrini.com

 

Read other Cindi Ferrini columns here. 

 

©2010 ShareWIK Media Group, LLC

 I will never forget my first hot flash.  Of course it’s a significant moment in every woman’s life.  But it also was the first time that I honestly experienced what so many of my special needs students deal with on a daily basis.  I couldn’t control my body and I didn’t know what to do.

I have been working with children with learning disabilities and various medical conditions for years (well, decades is more like it). And although I have worked with students who have compulsive thoughts and behaviors for years and felt I had a good handle on the organic nature of their condition, I realized after that day that I did not have a clue. 

I was interviewing a prospective family (father, mother and anxious teenager) for enrollment in our school program.  I have done this for years and can do it in my sleep.  I begin with casual small talk to put them at ease and then I move to specific topics of the student’s school history and our school program.  Because these are emotional topics, especially when a parent begins to recount the disappointment and fears that their child has experienced in previous school experiences, it is important that I listen, empathize and reassure. 

As I sat with this distraught family, I suddenly realized I hadn’t heard a word they had said...for quite a while…I could see their faces and their mouths move.  They were clearly in distress and needing me to respond, but my mind had been hijacked by this growing inferno that began in the seat of my chair and had risen to my neck. I felt the sweat break out and I had the sudden and very strong urge to begin removing my clothes.  All I could think of was that I needed to get out of these clothes!

I forced myself to look at the couple and to make some general comments that indicated I was listening, but I was not even sure I made sense. Slowly the heat wave receded and I could pick up the conversation again.  I began to relax and hoped that my episode had gone unnoticed and that I had not completely freaked them out, as I had myself.

My next act, after they left, was to call my doctor for an immediate appointment to take care of this situation.  I knew there were drugs for this and I wanted them all. Now.

It took me a while to put my incident into perspective and see what my students face every day.  I know, for example, that the tics from Tourette’s syndrome are involuntary. Even though the person may be able to control them for a while, he or she rarely fully controls their vocalizations or physical movements.  Yes, I know that.  I’ve witnessed it on a daily basis for years. But I never really understood the depth of the fear that person must experience when they realize he or she cannot change what is happening to them.

What about the young man who has frequent difficulty concentrating (ADHD) or the young girl who feels compelled to scratch her wrists?   Severe distractibility is a neurological response and, unless there is pharmaceutical intervention, it will occur just a certainly as my hot flash occurred.  Telling that student to “pay attention” is a waste of time. A well-intended, “It is important that you discontinue this behavior, for your own good,” just simply will not do the trick.

Textbooks and my experience in the classroom showed me how devastating it must be for a student to realize that their anxiety was taking over their ability to attend to the task at hand.  Their mind and body were doing their own thing and they were no longer in control. Yes, I knew it and saw it.  But now I get it. Now I get their fear and panic when they realize they have to “wait it out” and hope no damage was done in the process.  Just think how hard some of our kids must work to keep their thoughts and actions “under the radar. 

There was a remedy for my menopausal nightmare. And there are medications and techniques that can relieve some of the symptoms that our neurologically unique children experience, but there is no escaping the struggle they live with every day.  I learned a life lesson that day and view my kids with even greater admiration for their resilience and courage.  Think about how you feel when your hot flashes come and then imagine having them for your entire life.  That’s what a lot of my students and others face daily.  

Changes one’s perspective a bit, doesn’t it?

 

Jacque Digieso has been an educator for over 40 years.  She and her husband Joe co-founded The Cottage School, in Roswell, GA, to educate adolescents with learning disabilities, attention deficit disorder and other special educational needs. The School currently serves close to 150 middle and high school students.  Jacque and her husband have  two sons, one of whom is adopted, and a handful of grandchildren. 

The link to Jacque's Blog is http://cottageschool.org/jacquesblog/

To follow on Twitter: @cottageschoolGA

Facebook Page: http://www.facebook.com/pages/The-Cottage-School-Roswell-GA/163398465552?sk=app_106878476015645

©2011 ShareWIK Media Group, LLC

I realize that this blog site is intended to inform and entertain.  I love reading my fellow columnists’ witty observations. But today I am not in the mood.  I am angry!


Much of the talk around the nation centers on economic woes, waste and ideas for recovery.  In the educational world, our government is revisiting No Child Left Behind (which, by the way has left thousands of children behind). My home state of Georgia has been rocked by cheating scandals in the public system trying to deal with high-stakes testing and the reporting for student outcomes that link funds to schools.  What a mess!


Of course, each of us in classrooms and schools across the nation are well aware of the waste and “sacred cows” that our individual systems invite.  We see the administrators and state officials whose jobs and salaries remain intact while classroom teachers lose benefits, annual raises and, at times, their jobs. 


We read about the consultants who come into systems for technology upgrades or administrative training that we know are bilking the already depleted budgets. We comb through the storage areas that are stacked high with books, equipment and furniture that have gone unused or unneeded for years.  Just ask a teacher if you want to know where they think school systems could trim and reallocate!


However, I have recently become aware of an area of immense waste that most citizens may not have an opportunity to witness.   As an expert witness in a recent hearing, I saw an obscene waste of funds and watched a circus of unprofessional behavior that I have rarely witnessed. 


The case involved a parent whose rising senior son had been unilaterally removed from the diploma-based program and relegated to a “community-based” program that would award him the equivalent of a “certificate of attendance.”  In Georgia, this certificate is referred to as the “Employment Preparatory Concentration Diploma” or the “Life Skills Concentration Diploma.”  Neither of which will afford a student admission to a college or technical school in our state.  The word “diploma” is clearly a misleading misnomer, but does keep parents satisfied, since once they discover the ruse, it is too late to ask for a do-over.


The young man in question had been educated in the county’s regular education classrooms with some tutorial and reading assistance. Although he has been diagnosed with an auditory processing disorder and a speech and language disability, he was a hard worker and put every effort into succeeding.  Because he was so determined and diligent, he had passed all of his classes except two.  He had even passed the math graduation test and was within 10 points of passing the writing test.  No Child Left Behind afforded him through the age of 21 to receive educational services.  He was 18. 


However, due to recent testing results, which did not take into consideration his speech and language disability and stated that he would never be able to handle high school level work, the school system determined he could not earn a diploma.  Even though he had, in fact, passed three-fourths of the high school requirements, they determined that he required a life skills curriculum.  The county insisted that he be removed from the academic track he was on and shifted to a model that focused on basic life skills and fundamental academic skills.


The mother, a teacher in said system, knew that he was entitled to a “Free and Appropriate Public Education (FAPE) under No Child Left Behind, and insisted that he remain in the program where he was succeeding.  When it became clear to her that the school system would not budge, she enrolled him for his senior year in a private school that targeted students with learning disabilities and insured that he would earn his high school diploma.


In other words, she did what she had to do to see that her son earned what he deserved to earn.  He worked hard all year, earned his diploma and is now preparing for the entrance exam for the local technical school – his goal all along.


Once his goal was clearly in sight, Mom returned to the county and demanded to be reimbursed for what she knew she was entitled…a mere $30,000 to cover the tuition and the therapy he received during his senior year. The county denied her request.


And the very expensive circus began.


Several months and several hearings later, I was called in to testify to the appropriateness of the testing, the recommended county placement and the student’s success at the private school.  What I saw was out of some exaggerated movie scene. What I experienced was beyond my comprehension in today’s “enlightened” society.  Two sets of attorneys, one for the family, and two attorneys and the director of special education for the county school system, surrounded by at least 20 banker’s boxes full of files, notebooks and assorted documents. 


The hearing had been going on for weeks. The mom had been using her personal days to attend the hearings. The attorneys and county administrators, of course, were earning their keep. The school system tried every trick they could to discredit the student, the private school, the parents, you name it, all the while defending their decision.  I cannot even imagine the price tag on the attorney’s fees, the salary of the special education director, and the simple cost of duplicating tens of thousands of pages of documents.  All this to save $30,000? 


Really?


If this were one rare case, I would be overreacting.  However, the advocate attorneys that I know have more cases than they can handle.   The legal offices contracted to assist the county school systems have a sweet deal!  Both the school systems budgets and the personal funds of the plaintiff families are being drained.  The students who are the intended beneficiaries of our educational system are clearly left behind!


This case is still in process and one cannot even imagine the outcome.  But one thing is clear.  This system is way out of control. 


Jacque Digieso has been an educator for over 40 years.  She and her husband Joe co-founded The Cottage School in Roswell, GA, to educate adolescents with learning disabilities, attention deficit disorder and other special educational needs. The school currently serves close to 150 middle and high school students.  Jacque and her husband have two sons, one of whom is adopted, and a handful of grandchildren. 

The link to Jacque's Blog is http://cottageschool.org/jacquesblog/

To follow on Twitter: @cottageschoolGA

Facebook Page: http://www.facebook.com/pages/The-Cottage-School-Roswell-GA/163398465552?sk=app_106878476015645

©2011 ShareWIK Media Group, LLC

 

 

The phone call this morning was one of many each week.  Mom is in tears.  Samantha is in bed.  She won’t get up and come to school.  There is so much at stake.  Next week is finals week.  She is a graduating senior, but not if she doesn’t come to school. Can we make an exception?  Give her the finals in January?  Decrease the load? Rescue her from the choice she has made? 


More discussion reveals that Samantha partied at someone else’s house this weekend.  She did not take her medication that keeps her anxiety and adherence to a routine within acceptable limits.  Last night she was on her computer until the wee hours.  Mom is not sure if she was doing school work or something else, but she did ask her to go to bed several times.  Hmmmm….anyone here see a pattern? 


Samantha and her mother, like countless other parents and children are in a vicious cycle of indulgence, denial, avoidance and blame.  For personal success and growth to happen, the cycle must be stopped.  Does Samantha’s story sound familiar? 


Samantha is a young lady we have been working with for three years. Last year she completed the school year on top of the world.  Her grades were stellar and her level of responsibility was exemplary.  Samantha is a very capable student who struggles with anxiety and the avoidance tactics that she has developed over the years.  Mom cannot tolerate for Samantha to be unhappy or dissatisfied, so they have danced the dance of misplaced power for years.  


Mom begs, cajoles or ignores while Samantha does whatever she feels she should do to avoid feeling bad about anything.  She doesn’t want to do her homework so she doesn’t. The next day, she doesn’t want to go to class unprepared, so she doesn’t.  Mom calls the school to report that Samantha is “sick” and another layer of concrete is added to the barrier Samantha and her mother have constructed that separates this lovely capable young girl from the success she could be creating for herself. 


If things were so good last year, what happened?  Well, I suspect that the summer without a job (which we assisted her with but she did not show up for work) or any other meaningful activity created an intolerable level of anxiety as she anticipated her senior year. 


Once seniors realize that after graduation they are largely on their own, they may  experience a temporarily paralyzing angst . Most of the time, they come to grips with the reality that this is a process they must go through in order to finish high school. They buckle back down and end the school year with amazing grace and success.  However, Samantha does not have the support system to prod her forward.  She will continue to cover her head with her pillow and wait for Mom to rescue her by decreasing the expectations and giving her more wiggle room. 


Not this time.  


Our school staff has seen how strong and talented she is.  There will be no extension for her exams. If she does not pass all of her first semester classes, we will work with her to complete them in a timely fashion.  If graduation date comes and she cannot join her class, she will have had ample opportunity to reconfigure her situation. We will continue to provide the opportunity, but she has to accept the responsibility.  Knowing that the real world does not adjust to her anxiety is an important lesson that is best learned before she is dependent on the pay check! She has learned that lesson before, so now she has to trust that it is reality.  


I wish that parents, in general, and her well-intentioned mother, specifically, could understand that every time they step in to remove discomfort from their child, they sacrifice the opportunity to teach that child that they are strong and capable. Earlier  lessons are not so difficult because the consequences of failure for a child are not life changing.  The longer it takes to learn to look a problem in the eye and tackle the solution, the more damaging the consequences can become. 


Samantha still has a chance to achieve her goal of graduation.  When her avoidance is replaced with autonomy, she will no longer be a victim of her anxieties.  When resistance is replaced with responsibility, she will see her way through difficulties and challenges.   I have confidence in her spirit.  I just hope her mom shares that confidence.

 


Jacque Digieso has been an educator for over 40 years.  She and her husband Joe co-founded The Cottage School in Roswell, GA, to educate adolescents with learning disabilities, attention deficit disorder and other special educational needs. The school currently serves close to 150 middle and high school students.  Jacque and her husband have two sons, one of whom is adopted, and a handful of grandchildren.  


The link to Jacque's Blog.  


To follow on Twitter: @cottageschoolGA 


Facebook Page


 ©2012 ShareWIK Media Group, LLC

Recently we accepted into our high school program a young man who has had absolutely no discipline issues in his three years of high school. He works hard, strives to do his best and is extremely quiet and shy.  He was on a 10-day out-of-school suspension for grade tampering -- something that he, apparently, had been doing since 9th grade.  


I am not sure exactly how he accomplished it as his earlier forays into this white collar crime went undetected, but  during his last escapade, he was caught in the act.  When caught, he readily admitted his crime and his history.  Of course the school was outraged.  Clearly he needed to be taught a lesson. When he returned from his out-of-school suspension, he would face a Tribunal that would determine if he were to be charged with a felony.  


When he and his father arrived for the interview to enroll, I was struck by his honesty and his vulnerability.  He acknowledged that he was not afraid of failing. He changed his grades because he wanted to be the best.  He was afraid of not having the highest grade.   You see, he already had all A’s….he wanted higher A’s.  The grades that he changed actually had no  significant effect on  his average or his class standing.    His actions did not change nor have a negative effect on anyone else.  In some cases, the grades were changed from a 98 to a 99! When determining a Grade Point Average, he would still be granted four points!


He also had not broken into any classroom or computer.  He had found the classrooms often left open and grade books spread on the desk or computers left with the screens up.  He certainly took advantage of the situation but, apparently, that opportunity presented itself to him on more than one occasion.  With  his ability to hyper focus on a goal, I am sure he was immediately aware when a teacher did not properly secure their classrooms.


He also plays first chair clarinet in the school band.  When I asked how long he had loved playing the clarinet he answered, with a perfectly straight face, “I do not like playing the clarinet, but I learned to play it my freshman year so I could be in the first chair.”  When asked what he does enjoy doing, he paused and answered, "Nothing, really. I just spend time alone in my room studying and playing the clarinet.”   Hmmmm…here is a puzzle.  This is not your usual manipulative scoundrel who connives to get his way, avoid responsibilities and acquire rewards he has not earned.  


When his parents realized  that their son had gone to these extremes to achieve a goal that basically produced no pleasure, they were concerned.  They knew he was different from his siblings but thought he was only more reserved.  His father took this opportunity to take him to a therapist and decided to change schools to a smaller, more nurturing and responsive environment, in hopes his son would gain some insight into his motivation and some balance in his life.  Although he was shocked and disappointed in his son’s choices, he clearly sees this as a cry for help.


His home school, however, sees this from a completely different perspective. They want a pound of flesh. They have begun to obstruct his transfer to another school until they have had a chance to try him for his offenses. How dare this young punk take advantage of his teachers. He has clearly polluted the entire system with his trickery and must have the strongest of punishment.  Never mind that the professional standards of facility and grade security had clearly been abandoned by those teachers for several years.  Let’s not talk about the fact that this young man’s severe emotional turmoil has gone undetected for six semesters.  Heaven forbid that the school should acknowledge the  fact that this is more of a bizarre act, rather than a criminal attempt to deceive or cheat.


We will advocate for this young man and hope that when he enrolls with us we can restore his balance of life and return him to a perspective that is not driven by a compulsion to be the best at everything he does.  Clearly that is a recipe for  disappointment and unhappiness.  In our smaller setting we can supervise him more closely, in case his compulsion to be the best gets the better of him again.  We will surround him with encouragement and accountability.  We will partner with his family and therapist to help him address the reality of his performance and guide him into exploring less intense avenues that can become hobbies and leisure time activities.   


He needs to celebrate the strength of his talents and not view  himself as a failure, no matter what success he achieves.  This is not about punishing him.  He punishes himself every minute of every day.  This is about recognizing that his behavior, although wrong, was driven  by  something much more important than  the school  system and deeper than  not being trustworthy.  


I believe he can regain his balance.  Although educators must value honesty and the integrity of the grades, we also must recognize when the situation is really not about us. This is more than a missed opportunity; it is a shame. For a school to focus on the “wrongful acts” and ignore the mental health of the student is wrong.  I hope these interventions are in time to help this young man restore his soul!  


Jacque Digieso has been an educator for over 40 years.  She and her husband Joe co-founded The Cottage School in Roswell, GA, to educate adolescents with learning disabilities, attention deficit disorder and other special educational needs. The school currently serves close to 150 middle and high school students.  Jacque and her husband have two sons, one of whom is adopted, and a handful of grandchildren. 


Check out Jacque's Blog here, follow her on Twitter @cottageschoolGA, and find the Cottage School on Facebook here.


©2012 ShareWIK Media Group, LLC


Joe and I were just college students when his closest friend found that he and his girlfriend were pregnant.  In the late 60’s, that meant marriage, so they got married and soon their beautiful little boy was born.  Although unprepared for such a life change, they met the challenge of parenting, finished school, got a job and moved away.  Before graduation, their son, Daniel, developed a high fever.  In the hospital they put an IV into his head….James and Kathy swear that everything changed after that.  Who knows if that IV played a part in his difficult youth ?  Remember this was the late 60’s, before autism was so well known.  


We stayed in touch, visited them in their new homes as James’ job moved them all over the place.  Although Joe and I did not have children then, we knew that Daniel was not like other little boys.  He did not speak.  He played with his spit and was a master at twirling the tops of pots on the kitchen floor. He had violent tantrums.  One day when they were visiting us, we left Daniel to play in the living room only to find he had spread his feces all over the top of my  glass coffee table.  


We watched Daniel matured in size, but remain non verbal and difficult to control.  Several times while we were visiting we saw marks on his arms and wrists where he had been forcibly restrained.  James and Kathy did everything they were told to do and spent every hour of the day and night attending to their son.  The constant crises finally took its toll.  John became an alcoholic and they divorced by the time Daniel was ten.


The diagnosis then was autism.  The sound of that word broke my heart for years.  I had chosen the field of learning disabilities and so had little to do with the A word.  However, about ten years ago, we began seeing families with autistic children coming to interview to attend our school.  At first I was adamant.  We could not handle this disorder.  Because our students have at least average IQ, moderate behavioral issues and were capable of modifying their behavior, I did not see that autistic students could benefit from our program.  I also did not want to stretch the attention and training of our staff beyond their abilities.  I was so wrong!!


Since then we have had occasion to serve several autistic students a year.  Of course, autism has as many differentials as any other condition a human being can have, so there are characteristics that bode well for success and others that do not.  If a student is verbal, average IQ, social, to a point, and determines that The Cottage School program is good for them, the success is phenomenal.  


What I have missed all those years is the loving and gentle spirit that our autistic teens display.  They may be quirky, but it is in the most endearing way.  Their insight is mind boggling.  At times they say exactly what the rest of us are afraid to articulate.  Because they want to please the people around them, they can be amazingly helpful and considerate. They leave us and continue to be successful, with continued support from family and other agencies, in college, technical schools and on the job.  Wherever they go they can become beloved by the people with whom they interact!


I know now that Daniel was born too soon.  What we knew about autism was far too little.  He, his parents and the teachers who worked with him needed so much more.  Stories of successful people who have autism are everywhere!  Finally, there is hope!


Jacque Digieso has been an educator for over 40 years.  She and her husband Joe co-founded The Cottage School in Roswell, GA, to educate adolescents with learning disabilities, attention deficit disorder and other special educational needs. The school currently serves close to 150 middle and high school students.  Jacque and her husband have two sons, one of whom is adopted, and a handful of grandchildren. 

Check out Jacque's blog here, follow her on Twitter @cottageschoolGA, and find the Cottage School on Facebook here.

©2012 ShareWIK Media Group, LLC



The first ten years of my life as a parent really sucked.  No, they didn’t really suck. It’s more like, they sucked up every ounce of energy I had, and then wanted more.


My journey started out complicated, and that course has never changed. I have been destined to raise at first one non-traditional child, followed by two more kids who learn differently. For our family, atypical neurology is what I call “the new normal.”


Parenting a kid with unidentified, complicated issues is like walking onto a tightrope, watching as your safety net is removed, and continuing on without a net, uncertain that there will be a safe landing on the other side. 


You’re out there on the wire. It’s not like you really have a choice. But you’re committed. It’s terrifying. You’re sure the crowd is watching. And you feel simultaneously responsible and irresponsible. You have lost your confidence because for some reason that net really made a difference. And you are all alone. Except for the child on your shoulders. 


The only safety net for your child is you.


Desperately seeking definitive answers, specialist after specialist offering diagnoses that didn’t tell a whole story, the years of not knowing took their toll. My guilty little secret? The first ten years of parenthood were the most painfully difficult years of my life (something I’ve never let myself say to anyone for fear of somehow offending my children).


Don’t get me wrong.  I passionately loved my kids, whom I wanted more than anything in the world. I had the privilege to stay at home, and I put every ounce of myself into dutifully doing everything possible to give my kids the best life I could offer. 


I was a happy, grateful, stay-at-home mom. And I felt miserably in over my head, lost and alone in a world that no other parent I knew seemed to be experiencing. Did I mention those early years were really tough?


When my newborn began to scream at two weeks old, it set the stage for the next decade. As her peers went to ballet and karate, she went to vision and occupational therapy.  As her peers established authentic friendships and experimented with spend-the-nights, she changed schools, and then she changed again.


Longingly, I saw parents of kids with food allergies, ADHD, autism and other challenging issues receive clear diagnoses and find common ground with each other. They discovered what they were dealing with, connected, shared, learned and helped each other move out of denial and into acceptance. 


I watched from a distance, isolated by the most unsettling part of all -- the not knowing.


Before diagnosis, there are often years of not knowing filled with anxiety, confusion, and few companions on the journey.  It is a scary, lonely place to linger.


For me, the prospect of a clear diagnosis offered hope, clarity, and an end to the isolation. Without it, I felt adrift, directionless in a vast sea. 


In retrospect, I must have thought I needed a definitive diagnosis to find common ground with other parents. I let my fear that I didn’t know ‘the’ answer prevent me from joining any group to get the support I really needed. 


Now, don’t get me wrong. I’m not blaming myself for this. I really thought a diagnosis was my golden ticket for admission. I didn’t realize that the access point to end the deepest part of my loneliness was not in diagnosis. It was in sharing my experience with others.


So whether you’re clear on your child’s challenges, or you’re still trying to figure it out, here’s What I Know that can help you shorten your learning curve, and end the isolation:


1. Seek Connection: Even if you’re lucky and you have a friend, or a parent, or a sister who will listen, there is something powerful about connecting with others who share your experience. Without a clear diagnosis, those other parents can be difficult to find. But they’re out there! Don’t stop seeking. Reach out to other parents who understand even part of your experience. Get on Listserves, and blogsites. Other parents are your lifeline.


2. Find your Group: You have enough information to seek support, even without a clear diagnosis. You owe it to yourself. For almost every ailment or challenge there is a group, or a movement, or some collaborative effort for support – and they are generally really open and accepting of anyone who wants to be involved. Connection is powerful. Success is a team sport.


3. Step Outside the Lines: While diagnosis opens the door to community, for both parents and kids, it is not the only entrance. If you don’t have a definitive diagnosis, then focus on a challenge area (like executive function), or find a general group (like Learning Disabilities Association).  For example, I created ImpactADHD.com to train and coach parents of kids with ADHD. But it also provides a great support to parents of all kids who are challenged with similar symptoms like inattention, impulsivity and executive dysfunction. Don’t wait for a perfect fit – make it work!


For me, after nearly 18 years on this journey, I no longer feel alone on the ride. But to be clear -- I am still very much ON the ride. One of my children continues to defy a clear diagnostic path – she is truly one of a kind – and that poses interesting challenges. But I’m grateful for the clarity that I DO have. I appreciate my connections with many different communities. And we continue to chart new paths every day.


So, yeah, the first ten years of parenthood sucked for me.  But that doesn’t have to be your first ten years -- or five years – or one.  I think back to how hard it was without other parents who understood my world, and I cannot fathom how I made it so long. Other parents offer support and strength, validation and encouragement. They can help you enjoy the ride.  Yes, ENJOYing the ride is possible!


And, guess what? While the journey is not exactly what you expected it to be – ok, it’s not at ALL what you expected – it’s a pretty exciting adventure. It helps a lot when you find others who can ride with you through the laughter and the tears. 




Elaine Taylor-Klaus is the co-founder of ImpactADHD.com, a coaching & training community for parents of kids with ADHD. She is a regular columnist on ShareWIK.com and MySpecialNeedsNetwork.com, and writes for “Living Without” magazine. Elaine coaches women and parents from around the country, on the telephone, to live full and empowering lives, and is passionate about working with the parents of kids with complex needs. She works together with her husband, David Taylor-Klaus, in their company, Touchstone Coaching.


It’s that time of year.  The first day of school is right around the corner and frantic families are in the throes of last minute decision making.  Their teen did miserably at school last year, perhaps for the last several years. They have given into the pleas of “I will do better next year.”  ”I promise I will get my homework done next year.”  “ I will study harder next year.” Reality has hit.  Graduation is in jeopardy.  It is time to act. 


Mom has been doing her research for months.  Dad is protesting any additional expenses for a child who is not trying.  Grandparents are wringing their hands on the sidelines, offering a variety of solutions, none of which are helpful.   Teen, in typical fashion, sits glumly and watches the circus.  Time is running short and the stress level is palpable.


When I get the call from the mom (never the dad), the request is for an immediate appointment.  I accommodate, of course, since I know this is stressful for everyone!  The sooner they interview, the sooner we can begin the process of enrollment, and they can begin at the beginning of the year. Not all interviews result in enrollment.  However, if I screen the inquiry well in the phone call, I can usually identify those candidates who are most likely a good fit. 


There is one big problem.  One huge obstacle.   One enormous bummer.  The teen…the one for whom this is aimed…the one who is the intended beneficiary (victim, in their mind)…the most important person in the room is not on board.  They may be failing.  They may be on the verge of expulsion or dropping out.  They may be several credits short of graduation requirements, but they do not, under any circumstances, want to change schools. Change is unthinkable to them.  Leaving their friends and the football team (although they are not on the team) is impossible. Their heels are dug in and they will not budge.  They are “in control“ of this situation.  Just watch them!


As I sit across from them in the initial interview and begin to explain our program, I usually see a softening of their countenance.  During the rest of the year, prospective students are in the middle of crisis.  Every day is painful.  They come with a willingness to ease the pain, if not any enthusiasm, for making a school change.  


But our last-minute summer kids are coming off of a several week reprieve.  They have not been in school and they have had little pressure on them to do much more than eat, sleep and play.  To them, this new year is a new beginning and they are determined that “it is not that bad.”  They don’t have to change schools and nobody is going to make them!


Last week I sat across from a young man who had just completed his sophomore year…with no credits earned…in a local private school.   The school is “being gentle” with him because he is such a loveable kid…but they can not have another year of spoon-feeding him when their educational structure is not designed for individual attention.  And, since he does not do homework or study independently, there is little reward for their effort.  His mom and dad see the writing on the wall, but he is oblivious.


At first he barely spoke. He answered my few questions with one word or a nod and he would not establish eye contact.  However, as I described our motivational system with hourly pay for specific responsible behaviors, he began to soften.  He would establish brief eye contact or look at me when he saw that I was looking at his parents.  He began to sit up.  He even asked me to repeat my explanation of the pay system and the field trips students earn.  He really brightened up when we visited the gym and he saw the basketball team practicing. 


For periods of time he would forget that he was not supposed to like this school and would begin to listen with a more positive attitude.  But, predictably, he would catch himself, fall into his slump and the veil of discontent and boredom would take over his persona.  He really had to work hard at not liking what he was hearing.  His mom told me that after he left, he said “She was a really nice lady.  I can’t believe you wasted her time like that.”  


Yep, I did my job.


In the end, they left with the parents more sold than ever and the young man secure in the knowledge that he had done all he could to create a negative impression.  That’s what he thought!  I have done this for a lot of years and what I saw was what I expect to see at this time of year.  


I had assured him that we (parents and school) would not “make” him come here.  The last thing I want is for his folks to pay the tuition to have him fight us every day.  I explained that if he returned to his previous school and found he simply could not keep up, that we would be here to help. 


In a private conversation with his parents I explained that most of these kids have to learn by doing.  If they experience the discomfort, they want out, but until then, they minimize the risks.  If his previous school would take him back, we could give him about six weeks, at best, before he will be eager to make things “easier.”  It may sound risky to most folks, but it works every time.  

This young man is very capable, intellectually, but extremely ADHD.  He can not access his natural talents because his brain short-circuits his intentions.  He left my office feeling  confident that next year will be better and he did not have to argue or convince me otherwise.  


I left him with the knowledge that there are options that are better suited to his needs and that the door will be open when he needs us.  Having a knock-down drag-out session would not have benefitted either of us.  Tearing down his self-esteem would not have been productive either.  If we truly want to begin to empower our youth, we must allow them to experience the outcomes they, in fact, set in motion.  This will not be easy for his parents, or for him, but I believe he will make the right decision before the first grading period!


And now I must prepare for my next interview…my next recalcitrant rebel….and I predict the same pattern. It is that time of year…again!


 Jacque Digieso has been an educator for over 40 years.  She and her husband Joe co-founded The Cottage School in Roswell, GA, to educate adolescents with learning disabilities, attention deficit disorder and other special educational needs. The school currently serves close to 150 middle and high school students.  Jacque and her husband have two sons, one of whom is adopted, and a handful of grandchildren. 


Read Jacque's blog here, find her on Facebook, and follow her on Twitter @CottageSchoolGA.


©2012 ShareWIK Media Group, LLC



I am a very vivid dreamer.  Sometimes I wake up in the morning and I have to separate out the reality of the day from the nighttime images and emotions.  Mostly, but not always, my dreams are insignificant or ordinary. 


Although I am a morning person and usually wake up happy and ready to meet the day, I have been known to wake up under the influence of whatever I dreamed the night before.  I may not even be able to remember what the specific circumstances were, but I wake up sad, or frustrated or angry.  Luckily, I have a routine I follow to get ready for the day and it is during that routine that I can do a “dashboard check” to determine if, in fact, I need to carry the emotion of the moment into my daily experience.  Once I realize that although they are very real, these are not legitimate feelings based on the reality of my current circumstances, I am able let them go.  


Sometimes I have to ask my husband if we had a conversation about a topic like selling the house, or did I dream it?  Usually, because it is such a random topic, I know that what I “remember” did not happen in the light of the day, and I let it slide into that part of my brain where nonsense goes. I spare my husband that moment where he looks at me askance (he claims he never dreams) and gives me that “you sweet, silly  wife of mine” look. 


Other times my waking memory and emotional state are so thoroughly ingrained in my mind it takes a while to peel away what was a dream and begin to operate on the actual situation.  Just this week I found myself worrying during the day about how to help complete a written report from a board member at one of the nonprofits with which I work.  


It took a while before I realized that there were no written reports expected….that  concern was part of my story line during my sleep the night before.  I had very elaborate visuals and conversations that I could recall--none of which had actually happened. Once I had that reality check, the stress that I was feeling was immediately relieved and replaced with the frequent chagrin that I may be losing my grip on reality!! But this has happened to me for years-since adolescence-and I do not seem any crazier than I have always been.


This is the time of year that we educators are surrounded with anxiety.  Our new staff members spin themselves into a frenzy trying to do it all because they want to begin the school year prepared and excited…even while they are trying to remember where the restrooms are and the time and dates of the staff meetings! Our new families are overcome with second guessing and fears that they will never find the perfect fit for their child.  The returning families are fearful that the gains made last year were a fluke or that the challenges of the past year will get worse.  It should not be a surprise that the beginning of every school year feels like it is vibrating with emotion. It is the perfect combination of the fear of the unknown and the known!


I can relate to these anxieties.  I go through my days with ease and confidence.  My time is filled with appointments, meetings and events.  It is in the nether, nether land of sleep that my brain begins to re-enact the reality of my insecurities.  There is nothing to distract me from the fears I so gracefully ignore during the day. I am not in control of the night time images and emotions that rush into those surreal but vivid images, conversations and feelings and linger into the waking hours.


If I, a more than middle-aged adult with years of therapeutic experience, am a slave to these fears and find myself a bit shaken from time to time as I deal with what my mind imposes on me, think what it must be like for the young middle school student whose days have actually been filled with nightmarish experiences.  

What about the teen with compulsions or other behaviors that are not entirely in their control, but have very real social consequences?  Where do their dreams take them  when there are less distractions to alleviate their self conscious state?  


How many times do our students carry unresolved negativity left over from a reality that occurred beyond their awareness? Their youth and inexperience makes this occurrence a much more uncomfortable state of mind.  Their creativity and sensitivity to their environment contribute to the powerful images they may experience in sleep.  I would like to think that their dreams are gentle and uplifting….but I know better.  I would hope all the adults who deal with them are aware of the overlay of emotions our kids often endure…but I know better. 


What I can do is remind our staff and our parents of the fragile state our students are at the beginning of the school year, acknowledge that anxieties affect us all and encourage them to reach outside of their own anxieties to buffer and absorb the demons our kids may bring with them each day. And try to remember that advice myself!



Jacque Digieso has been an educator for over 40 years.  She and her husband Joe co-founded The Cottage School in Roswell, GA, to educate adolescents with learning disabilities, attention deficit disorder and other special educational needs. The school currently serves close to 150 middle and high school students.  Jacque and her husband have two sons, one of whom is adopted, and a handful of grandchildren. 


Read Jacque's blog here, find the Cottage School on Facebook, and follow her on Twitter @cottageschoolGA. 


©2012 ShareWIK Media Group, LLC


Kids are like a blank canvas and parenting them is an art. 

They come into this world – however they ultimately arrive at our doorstep – full of hope and possibility. They are unbridled potential, and we are their curator. They rely on our vision of who they can become, and we try to cultivate their inherent gift, their expression of themselves.

It is a symbiotic relationship of beauty and belief. It’s a miracle. And it happens every day.

When our young artists are faced with clear and undeniable “deficits” that challenge their ability to paint their own canvas, it can throw us for a loop. We have to re-think the entire show that we were planning for their lives. Usually, this means changing in mid-stream…again, and again, and again. Sometimes, we even need to return to the blank canvas and start again. 

Raising children with complex needs is the best kept personal growth secret around. Like it or not, to be successful, we parents must learn to embrace three things above all else: 

  1. To Trust Ourselves;
  2. To Believe in Our Kids;
  3. To Let Go (Expect the Unexpected)

Trusting Ourselves

No one knows our kids better than we do. Not their therapists, their teachers or their friends. When we pay attention to it, we have an instinctive understanding of our kids that doesn’t come from a book or a written report. We see the artist within.

And yet, we constantly seek the direction of “experts,” somehow hoping that someone else will make sense of the disarray of colors we see on the palette before us. As parents, when we call our own capabilities into question, we are not serving our kids, and we are not honoring our full power and capability. Moreover, we miss the opportunity to model for our kids the importance of trusting themselves.

Believing in Our Kids:

If we don’t believe in our kids, how can they be expected to believe in themselves? And if they don’t believe in themselves, well…

The challenge of raising complex kids is to embrace who they are, rather than to evaluate them by someone else’s yardstick. They are not necessarily the MVPs on the soccer team, or the kids who will create a non-profit to serve poor children in Zambia (although, they could be). But each kid has a gift to be nourished, a capability to be identified and enhanced. David Giwerc’s article about Cultivating Strengths captures this idea beautifully. 

Often, the trick is to acknowledge who these kids are in their essence, rather than constantly focusing on the “doing.” When they are able to believe in who they are, they will learn to manage what they do over time.

Letting Go:

“I have to believe that this is happening now because we’re ready to handle it,” my client told me this week. This year’s school plans have just been up-ended, and they are going to have to start over in October. Not an easy task. 

But her comment is a powerful example of what is possible when we accept that things are unfolding, instead of “freaking” when things don’t go as we expect.

When our kids come to us, we are full of expectations. And while that’s a good thing – it’s great to have a vision – we can get caught in the tyranny of the “shoulds.”  If we’re not careful, we end up “shoulding” all over ourselves – she should be an “A” student, he should play a team sport, etc. The people behind the “should” can get lost in the process.

Letting go is about shifting expectations, trusting our ability to respond to whatever happens, and trusting that our kids will be okay. It’s about allowing life to happen, instead of having to control every step of the journey. Sometimes, it’s about allowing for failure in order for learning to create a path to success.

In the world of coaching, we start with the premise that everyone is creative, resourceful and whole. We believe that empowering people to see their strengths is a critical step on the road to transformational change. 

This takes an extra effort when there is a dis-ease state that squarely lands our kids in the realm of “disability.” But within every disability, there is also ability, and seeking it out is worth the effort. It offers hope, and joy.

As curators of our children’s lives, isn’t that ultimately the artistic creation we’re trying to produce?

Elaine Taylor-Klaus coaches parents from around the country, on the telephone, to confidently help their families thrive. She is the co-founder of ImpactADHD.com, a free resource for parents, and works together with her husband, David Taylor-Klaus, in their company, Touchstone Coaching. Elaine is a regular columnist on ShareWIK.com and ImpactADHD.com, and writes for “Living Without” and "Womenetics.com" magazines.



 ©2012 ShareWIK Media Group, LLC


For all of my teaching career, I have worked with students who found little success in their school setting, which then resulted in little success in their lives as a whole. Due to a variety of variables (poverty, learning disabilities, abuse, emotional fragility, language barriers, adjustment reactions) the behaviors required for task completion, content mastery, and skill development are not learned and the deprivation of successful abilities continues in a circle of frustration and failure. 


The pattern is repeated generation after generation  and is an equal opportunity visitor.


For all my teaching career I have also worked with students who discovered the joy of achievement and became absolutely and unequivocally addicted to the taste of success. Once the tasks are defined within their area of skill and the environment is conducive to risk-taking (in the form of the risk of failure by trying something new or previously impossible) students of all ages begin to work with energy and pride that seems endless! 


Not that finding that combination is easy. It is not. People who expect failure avoid opportunities that could result in that outcome.  That means that their opportunities to experience success become extremely limited. How many movies have we seen where the emotionally fragile, hopelessly depressed teen, wife, business person meets just the right partner, job or mentor, and, through trials and tribulations, finds happiness?  Sounds sappy, but it is true.  


One of my recent explorations into this theme is a book entitled “The Language Of Flowers,” written by Vanessa Diffenbaugh. I doubt that the book will be a historical success, but since I work with so many adopted teens and am an adoptive parent as well, the pattern of avoidance rooted in low self-esteem that is presented in this book plays out in households and classrooms across our country. Granted, the scenes in the book are far more extreme than most cases, but the truth is there.


As a new teacher in the late 1960’s, I was in a world where little was known about the emotional impact that anxiety and depression play on the ability of a person to learn and to cope.  I however had been a lost soul for several of my adolescent years and knew/believed that if I could create an environment of acceptance, I could begin to reach the students I was most attracted to…. those kids whose faces reflected negative emotions or little emotion at all.  Childhood is a developmental time of exploration and growth.  When something interferes with that natural process, the “business as usual” model does not work.


I saw it in Thailand when I worked with teens of ex-pats who were without a culture of their own and whose parents were absent or preoccupied.  I saw it in rural Ohio where I taught the children of farmers, many of whom only attended school until the legal age of  returning to the farm to help with the family business. I saw it in the public classrooms in Georgia where the pace and expectations of the school were no match for the learning needs of the students in those classes.  I especially saw it in the psychiatric hospital classrooms where the emotional toll of their young lives left students incapable of believing that they could join their peers in the academic journey to success.


It was not my college educational training that molded my approach.  My lessons came from the students themselves. Once I had established a safe environment and accepting attitude, they began to trust that we could work together.  Once we worked together, they began to trust that I could help them.  Once they learned to believe I could help them, they could begin to help themselves.  And the trajectory moved upward from there. Not every day. Not always. Not every teen. But enough to keep me motivated by their success!  


I am addicted, as well!


Jacque Digieso has been an educator for over 40 years.  She and her husband Joe co-founded The Cottage School in Roswell, GA, to educate adolescents with learning disabilities, attention deficit disorder and other special educational needs. The school currently serves close to 150 middle and high school students.  Jacque and her husband have two sons, one of whom is adopted, and a handful of grandchildren. 


Read Jacque's blog here, find her on Facebook, and follow her on Twitter @CottageSchoolGA.


Read more columns by Jaque Digieso here


©2013 ShareWIK Media Group, LLC

Like snowflakes, no two children are the same, nor do they have the same needs. As parents, we spend a lifetime – our children’s lifetime – identifying and anticipating a child’s needs and meeting them as best we can.

When a child is identified with “special” needs, that effort becomes more complicated. Not only must we attain a certain medical expertise in order to identify what is required to meet the needs of our child, but then, we have to figure out how to do it, regardless of how extraordinary those needs may be. 

Because this is our child, there’s nothing we wouldn’t do to make life work for him/her.

So, in addition to managing the daily grind, we end up with sleepless nights of worry and wonder. Nagging us at 2 a.m. are two fears that seem to run in tandem, and to some degree of contradiction, all at the same time: 

  • “What if my child never becomes independent?” 
  • “What if I’m not here to support my child?”

There are logistical answers to these questions, of course. We can plan, and put systems into place to handle the operational concerns implicit in those late night ponderings. These answers lie in the realm of accountants, executors and lawyers. They are something you can Google and develop solutions.

But the fear behind the logistics is what really keeps us up at night. For the only thing worse than contemplating our children pre-deceasing us is the likelihood that we will pre-decease our children. For parents of special needs kids, THAT prospect is terrifying.

By the time we’re awake and wondering, we’ve generally developed default coping strategies. We’ve scripted messages for ourselves and we use them to keep us going. Whether we place our trust in God, or family, the “system,” or some combination, we create a world view that helps us cope.

Our challenge is to use those scripts to help us process that most complicated parental dilemma, the ultimate parenting Catch-22 – how can I care for my child if I’m not here? 

There are two steps to help us prepare emotionally to leave our children in the world without us, to help us navigate our fear. The first is to prepare our children. The second is to practice radical acceptance.

• Preparing our children is the simpler of the two, because that is the job of parenting – teaching our children to take on increasingly more responsibility for themselves, at whatever level is possible for them. We spend their lives encouraging them to do more for themselves. So while there are some specific conversations that we will want to have, preparing our children is part of the natural course of things. 

It’s never too early (within reason, of course) to have “big picture” conversations with our children that prepare them for life without us. We can do this matter-of-factly, without adding our fear to their world view. It is also a great idea to create an “Ethical Will,” a document that offers your child philosophical guidance, a clearly articulated vision of what is important to you, what values you hold dear, and what you want for your child. This document becomes a guide for your child, and for the adults who will assume responsibility in your stead should you die before your child reaches maturity.

Practicing Radical Acceptance is perhaps the most difficult challenge a parent of a special needs child can take on – and arguably the most important. This involves letting go of fighting and accepting things as they are. 

In many ways, it seems like I’m suggesting yet another parenting Catch-22. After all, we spend our lives fighting for our kids, advocating for them, enabling them to live life on their terms. How can I suggest that we need to accept?

But as the Serenity Prayer teaches us, there is grace in acceptance. No amount of worry, or stress, or fighting the system will change the reality that we are likely to die before our children. There is no bargain we can strike, no negotiation that will change that reality. Fighting it will add stress – and potentially accelerate the process. Acceptance will bring peace – and potentially enhance your time together. 

At the end of the day, we cannot actually control what happens in our lives, or after our death. The only thing we can control is how we respond to whatever happens. This is where Radical Acceptance can be so powerful. This is where we can find peace amidst the fear.

Because the fears are real, and they aren’t going to just disappear. We have to train them, guide them, re-direct them and replace them with something that we can believe in. We can look to our own scripts for guidance.

Whatever your coping strategy is -- trust in God, or family, the “system,” or some combination – let it lead you to engage your children in the practice of radical acceptance. Just as that strategy has helped you cope with living with special needs children, it can support you as you begin to face the prospect of dying with special needs children.

Elaine Taylor-Klaus coaches parents from around the country, on the telephone, to confidently help their families thrive. She is the co-founder of ImpactADHD.com, a free resource for parents, and works together with her husband, David Taylor-Klaus, in their company, Touchstone Coaching. Elaine is a regular columnist on ShareWIK.com and ImpactADHD.com, and writes for “Living Without” and "Womenetics.com" magazines. Follow her on Twitter@TouchstoneCoach and @ImpactADHD.


Read more columns by Elaine Taylor-Klaus here


©2013 ShareWIK Media Group, LLC


No two people experience a disability the same way just as no two people experience loss the same way. The personality of the person, their support systems and life experiences determine their grief reaction and how best to help meet their needs. 


Adults with special needs experience a number of losses that often go unrecognized. Most do not get a driver’s license, get married or have children. Some live with their parents into adulthood, and when their aging parents die it necessitates a move into a new setting. The adult has not only lost a loved one, but a home as well. Staffing changes in group homes may also be the source of unrecognized loss. In addition, housemates, staff or co-workers may die or move on leaving the adult isolated and grieving. 


In addition to these multiple losses, many adults with special needs experience a history of disenfranchised grief. People think that because of their limited cognitive skills or other disabilities they don’t understand death or experience the feelings of grief.  While this varies from person to person, the bottom line is that even if an adult with special needs does not understand the permanence of death, he or she knows that someone is missing. Something is different, something has changed. These losses need to be identified and normalized.  


Adults with special needs often have communication problems. There may be expressive and receptive language limitations. Feelings may be expressed through changes in behavior such as “acting out” or withdrawing.  It may be helpful to “communicate in segments of readiness - giving information, waiting for questions, then asking for understanding."


How can you best support an adult with special needs in their time of grief?

  • If death is impending, allow the adult to visit with the dying loved one.
  • Prior to the death, prepare the adult by looking at pictures or a taking a field trip to the cemetery or funeral home.
  • Allow the adult to attend the funeral or visitation even if special arrangements need to be made to go early or late.
  • After the death, offer the opportunity to participate in rituals and visit the cemetery as part of the grief process.
  • Model healthy and appropriate expressions of grief.
  • Utilize art and music for feeling expression.


We all grieve in our own way and in our own time. The same holds true for adults with special needs.  We can offer support and understanding by normalizing and validating their feelings as they move through their journey.


Please visit our on-line grief discussions groups at http://www.hospicewr.org/discussions/grief/.

Diane Snyder Cowan is the mother of two grown daughters and a national leader in using music in grief therapy, as well as the director of Elisabeth Severance Prentiss Bereavement Center of Hospice of the Western Reserve in Cleveland, Ohio.  She is a regular ShareWIK.com columnist. To learn more about Diane, visit her blog.


Read more columns by Diane Snyder Cowan here

©2013 ShareWIK Media Group, LLC




©2011 ShareWIK Media Group, LLC. All rights reserved. ShareWIK does not provide medical advice, diagnosis or treatment. For more information, please read our Additional Information, Terms of Use and Privacy Policy.

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