2. The best thing frightened parents can do is face their feelings and admit their frustrations.

It takes time for them to learn to accept their feelings as natural, neither wrong nor right. Parents get into trouble when their expectations of themselves are too high. They can’t possibly be as perfect as they expect to be.

Real control comes when parents are able to honestly accept their fallibilities, their raw emotions, and deal with them. Parents need to let go of an all-or-nothing way of thinking that sets them up for failure. “Should” statements lead to guilt when parents only do things because they should, not because they want to.

Paying attention only to the negative and not to the positive keeps you from seeing the positive attributes in yourself, your family and your child with the disability. A sure sign of this is ever-constant, consuming anger toward others or toward the injustices of the system serving their children. Nothing is ever that bad!

Such overreactions are exhausting and prevent parents from looking at the reality of their circumstances and from helping their children. They become so swept up by hopelessness and rage that there’s little left over for the child. In these situations, for the sake of the family, it is imperative for the family or the parent to seek professional help.

1. Every family is unique.

How the parents respond to a child with a disability depends more on the parents’ attitude about disability than on the actual severity of the disability. I’ve often heard spouses express opposite views of their child—that is, for instance, the father may accept the child as he or she is, a gift and a wonderful lesson for the whole family to embrace while the mother wife expresses her sadness, worries about her child, and fears she isn’t equal to the challenge. For her, this child isn’t a gift but a burden, even though she loves her child. And in this case, the dad who’s actively involved with his children considers the child first, and the disability second.

Both parents might agree to do what is necessary to help their child, but Mom is more tenacious in her search to uncover a cure, (even if there isn’t one) while Dad is more concerned with the child’s comfort zone, place in life, and self-esteem than he is about  finding a cure. So these parents operate from two different perspectives, one from acceptance and one from denial. The meaning of the child’s disability is different for each, emanating from self-views.  When crises occur, these parents often find themselves debating how far to go to help their child’s condition.

How, then, can these differences be reconciled? Time, patience, respect, and willingness is required for parents to listen to and take in each other’s feelings. This occurs in families whose love and respect of each other supersedes all else. Those parents seek a middle ground to help their child. They respect one another’s approach as different—but not necessarily better or worse.

In situations where one spouse is uninvolved, it puts added pressure on the one already consumed with the caretaking and decision-making. The uninvolved parent is generally so unhappy about his/her child’s disability that he/she escapes through work, drug of choice or activities outside the home. If these differences become so intense as to create marital problems, then a family counselor is needed to help them try to work through their problems.

Unfortunately, these parents are often so consumed with anguish about their child, or guilty about their lack of involvement, that they’re the last ones to call for help. Both claim they don’t have enough time to see a counselor. By then, a pattern has developed: The less-involved parent leaves all decisions and most concerns up to the parent who is involved with the child, causing further resentment and isolation between the spouses.

Families need honesty, balance and objectivity—“HBO”—in their lives in order not to crumble under the weight of their problems.  Having someone nearby to listen to them is a step toward healthy adjustment. Whether a friend, counselor, or another parent going through similar experiences, it’s crucial to have someone be there (as I had in the early days) to provide reassurance and perhaps offer other perspectives.

As mentioned, the meaning that disability holds for parents is more crucial than the degree of the disability. If a child’s disability is on the cusp so that the child appears more typical, that parent may worry more because the child tries so hard to fit in but is socially left out. Yet the parent of another, more severely involved child who’s in a wheelchair might accept the reality of what he or she will be able to do in life. I’ve seen several young severely disabled adults surprise everyone and go on to graduate from college, despite minimal expectations for them. Their parents clearly saw their gifts beyond their disabilities.

When parents have a place to come together to talk, their problems seem less challenging. I’ve not done a study on parent groups, but my 30 years of working with parents and their children leads me to believe that those who participate in support groups make quicker and better adjustments and accept their reality simply because they feel supported and less alone.

If someone would’ve told me that giving birth to a child with disabilities would forever change me in a positive way, I never would’ve believed it. I was so hard on myself, feeling so ill equipped and unforgiving. But Dana changed me in ways that I couldn’t then imagine. It was through her that I chose the work I do. It was through Dana that I healed myself. It was through her that I learned to lend a helping hand to parents by letting them know they’re not alone, supporting them as they adjust to their crisis. And it was through her that KIT came to be created and many children were positively transformed. .

Of all the challenges life presents us, nothing is more important than our roles as parents—yet that’s the very task for which we’re least prepared. Every family, I found, has to learn to adapt to new experiences in ways that are best for them and for their children. Each child is unique and cannot be raised by one set of given rules, especially if the child has a disability.  While the children are developing, so, too, are the parents learning. They’re in uncharted territory, feeling their way as their children grow.

Again, here’s the key: Parents must understand and appreciate their children’s attributes instead of only focusing on their struggles. Having realistic expectations comes from seeing the real child, not the child you want to see. The chronically disappointed parent has to get over it. Yes, times are tougher for the child with the disability. But the  small successes feel even greater when the parents notice them. I’ve seen time and again how developing that kind of appreciation made a huge difference for parents. As a result, their children brought joy and love into their families in ways they never expected.

Marriage these days has a pretty low success rate, with divorce occurring more regularly, in families who have children with disabilities. As a marriage and family therapist, I have worked with many hundreds of couples and their children with disabilities.

There are myriads of differences impacting spousal relationships in ordinary families that lead to divorce, but when illness, disabilities or addiction occur in a family, the pressures of marriage build up often leading a couple to divorce. Yet I have seen people who do have the same problems, but somehow manage to carve out successful marriages. What is different for these families?

For the sake of brevity, I cannot give all the reasons, but can provide a picture of those who have managed (not without struggles) to stay together and work toward finding reasonable happiness. I have learned from them their secrets of staying together and how they have learned to have a happier family.

The following outline will offer highlights of their experiences.

MARRIAGE

Prioritize couplehood- Realize you both have individual ways of dealing with feelings. Plan to talk about your feelings together, listen and try to hear the other. Respect each other’s differences. Find other parents to talk to who are experiencing similar things.

Plan time together- talk about each other’s interests and concerns. Take a 10 minute walk together around the block. If you can, find a sitter to stay with the kids one time a week just to let off steam. A sense of humor is vital to the relationship. Rest whenever you can.

Mother/ Wife-what works, what doesn’t

Do one activity for yourself daily, whether it is 5 minutes or 50 minutes. Read and exercise, even if you divide up the time. Don’t worry so much about the house. When your child rests, you rest. Mom usually has the responsibility as chief caretaker of the house and the kids. It is tempting, but try not to tell your husband how to care for your children. Ask for help when you need it. Don’t expect Dad to know when to help all the time. He is not a mind reader. Husbands have to handle things in their own way, not necessarily mom’s way. When Dad and kids are together, mom needs to  stay out of their way. Let them have their own relationship. Mothers often feel so much anxiety that they dictate to their husbands, because they can’t let go of control, because the dads may do things differently. In this situation, the husbands can give up, feeling inadequate and controlled by their wives.

This reaffirms mom’s belief that no one can do things as well as she, leaving her feeling alone and depressed. A no win situation

Husbands/ don’t be so afraid

Men often are over involved in their own work. The last thing they want to come home to is a frenetic household, yet that is what they come home to, when there are children at home. It is even more difficult when the child has a disability. Dad’s reactions might be to hide out in his quiet space, read the paper, have a drink, but of course, that’s not always possible. Moms are anxiously waiting to see their husbands, to talk about their day, to see a grownup person, to talk about her worries or concerns, usually the last thing the husband wants to do. The husband has spent his whole day with people while his wife has been mostly isolated. This is a critical time of day for spouses. Bring her flowers!!!!

They both need to connect in some way either by having an agreement to talk together for a few minutes if needed, or to separate their activities until they feel ready to really spend time together. Although this may be difficult, the husband cannot disappear for very long. He needs to pay attention to his wife and to his children. He can be observant and chip in to help, and not wait for his wife to ask him.

Last but not least, both parents have realize that their children may not need them as much as they think they do. It is often anxiety that causes a parent to always be holding or playing with the child when in reality, he or she might need quiet time just like the parents do.

Summary- Suggestions for a better quality of life.

• Take small steps toward gaining HBO- Honesty, Balance, Objectivity
• Learn what you can control, and what you can’t.
• Life has many options, what is possible, which do you choose?
• Affirm yourself for being you- try not to be judgmental. Trust yourself, no one wears your shoes, only you do. Pay attention to your abilities, not your disabilities. (your child too)
• When you feel anxious, slow down, try not to be super parent. You face the risk of burnout. Control what you can, not what you can’t.
• Keep up relationships with people you care about.
• Acknowledge your talents, abilities and find room for them.
• Plan and live in present, yesterday passed, tomorrow is not yet here.
• You have one life to live, how are you going to live it?

These are ways in which parents can live together and avoid divorce.

BUT YOU HAVE TO TRY!

This is a time to think about how we as “normal” (and I use the word loosely), need to learn to appreciate the often hidden qualities of people with disabilities especially those with Cerebral Palsy. People generally shy away from people with Cerebral Palsy  who appear to have limitations by their severe disabilities. They misunderstand that the physical limitations may have no restraint on their cognitive abilities. Don’t sell them short! I know many brilliant and capable people affected by Cerebral Palsy, all who are extremely bright. Some have language deficits but are not affected by their ability to communicate their ideas. I once heard a comedian with Cerebral Palsy (in his stilted language abilities) ask the audience at the beginning of the show to raise their hands if they couldn’t understand him, everyone raised their hand. Then when he ended his show and asked the same question, no one raised their hand.

It just takes time, patience and a willingness to let go of prejudgement. By not making an effort to understand, you may be missing connections to someone valuable you might never have met.

This is an article about Dana’s Legacy written by Chris Ryan, Senior Editor of Newswire.com . His descriptive words highlight the feelings so accurately, I couldn’t have done better myself. Here is his article for you to enjoy.

Dana’s Legacy is one of the most inspirational autobiographies of a mother whose first born suffered from cerebral palsy. Written by Gayle Slate, a professional marriage, family and child counsellor, this book is the heartbreaking story of the many trials and tribulations she and her husband Don had to face with her daughter Dana.

This book that offers great solace to people going through similar pain of having to deal with disabled children received the National Indie Excellence Award in the new Non-Fiction category. The book was also duly honoured by the San Diego Book Award Association. This association recognizes and honours authors of good books from San Diego.

Dana’s Legacy is a heartrending story of a mother’s painful journey with her first child born with cerebral palsy. Gayle’s determination in making the best of her situation and emerging triumphant among the most trying situation is a great inspiration for parents with disabled children. She shows us how we can turn any negative to positive and how we can lead a fulfilled life, no matter what.

Not only for those with disabilities, this book also inspires everyone and shows how to best cope with life challenges. Apart from being a great motivation for parents, some of the stories in this book also focus on children with down-syndrome, cerebral palsy, autism and other disabilities.

By reading Dana’s Legacy, anyone who has suffered from trauma in life and anyone associated with children suffering from development disabilities will hugely benefit. Gayle’s daughter died when she was just above fourteen years of age but left behind a great legacy as an inspiration for thousands of suffering people, especially parents. Gayle, through her experience, did not break down but emerged stronger. She joined a school to become a therapist and has since been helping parents with disabled children endure and grow out of the trauma.

The book teaches parents many valuable lessons on coping with the darkest moments in their lives. It teaches them how to view disability as an opportunity and not just as a tragedy. It shows them how best to re-create shattered dreams for your child.

Through her breakthrough book Dana’s Legacy, Gayle teaches tearful parents of disabled children how to look through their deformities and come face to face with their inner beauty and personal worth.

By reading this book, families going through trauma can learn how best to respond in a positive manner and face feelings in an honest manner. Special needs children have their own intrinsic worth and by realizing their potential, families can shift focus from their disability to other positive activities.

The well being of the entire family is on the progress of the child. Apart from the help you take from professionals such as nurses, therapists, program directors and teachers, realize the value of your expert inputs too as none other than you know the exact requirements of your entire family.

Reading about Dana’s life is sure to have a great impact and put you as a parent of a special child, on the right path that is filled with hope and optimism.

Hi! I’m Ty!

I have the best adventure of all to tell you about this time…the story of how my adventures began! I was asked by a really nice lady, Gayle Slate to tell my story (or in grownup speak, be a guest blogger) on her blog site www.danaslegacy.com/blog .

Gayle Slate is a Mommy, too and she wrote a book to help families go from “Heartbreak to Healing”. Check out her site and thank you, Mrs. Slate for asking me to share my story on your blog! Look for it soon on her site!

I am 7 ½ years old, that means I am the biggest, biggest, biggest brother in my house. My Mom & Dad thought they would have a baby when my Mom was 24 years old and my Dad was 26 years old…ME!

Since I was in my Mommy’s tummy first, Mom & Dad did everything the doctor told them. Mom didn’t eat anything she wasn’t supposed to, she didn’t work out too much, they took all of the tests the doctor told them everyone else was taking. One of those tests said I had less than ½ of a percentage chance that I might have Down syndrome. So Mom and Dad had more pictures taken of me in Mommy’s tummy but still did not find out if I had Down syndrome for sure. I’ve seen the pictures of me inside Mommy’s tummy, they are so cool! Did you know I was a baby once, too?!?!

The doctors tried and tried to get Mom and Dad to take more pictures but instead they went home and pretty soon I was born! The baby doctor who first saw me in the hospital wasn’t sure what to tell my Mom & Dad since I had Down syndrome, but Mom & Dad of course saw me as Tysen, not anyone else and took me home.

Soon after I got home all sorts of people came to visit me, like my family, friends, neighbors, and teachers! The teachers helped me to get stronger and stronger, see my muscles?!?! I practiced and practiced every day until I could zoom around the house doing a Bear Crawl, ROAR! Then right after my 2nd birthday I decided to start walking, right before our family was going on an airplane trip. Mom & Dad walked with me up and down the aisle of the airplane, back and forth, back and forth. It was fun…for me!

When I was 3 years old I started preschool at California Head Start, where I was just like any other kid and learned to ride a tricycle, spell my name and use the toilet. Right before my 5th birthday I went to my first day of kindergarten. My teacher did not see me as Tysen as my other teachers had and pretended I was not in her class. I wanted to stay home and not go to school anymore. I wasn’t having any fun, besides on the playground when I could run around. I tried to run away from my teachers whenever I could. I was not having much fun at school…

Right after I started my second year of kindergarten with a new teacher, I had surgery to fix my heart in the big, big city of San Francisco. We hold our breath when we go over all of the bridges. Ready, set, go! The doctors did an awesome job fixing the hole in my heart and my leaky valve that I was born with, but my heart did not like it very much. So I had to have another surgery to hook a machine called a pace maker to my heart to help it pump…pump…pump. I have to be very careful to keep my machine protected. Sometimes I like to make a really big deal out of it, just to see what people will do. Hehehehe… but I’m learning that my machine isn’t something to be funny about. Well maybe not all of the time anyway.

I started 1st grade at a brand new school with really fun teachers and made some good friends. I even had an 8th grade buddy! Whoa! I think people at my new school understand and see me as Tysen, not some other kid. I still have Speech class and OT class like I always have since I was a baby. I like Speech class ‘cause it helps me get my words out when I have a hard time talking to my friends or teachers. That can be very frustrating, ooohhh, I get so mad sometimes when that happens L. But I go for a walk to cool down and I come back to class ready to go. OT class is fun, too ‘cause I get to move around and around and around! Big muscles! Oh yeah, baby!

I will be a 2nd grader when school starts again in the Fall and I’m sure I will have lots more new adventures and learn fun things. Computer time and PE still might be my favorite times of the day, though. They are tough to beat. I do have times when my friends and I get mad at each other…like when I feel like a good bear hug in the middle of a story, and they don’t or they say I can’t do something by myself because I might mess it up, but I won’t. All sorts of friends get mad at each other all the time. Mom & Dad say it’s part of being a kid. Well I guess that’s me then, because I’m just like any other kid.

Story Two.

We just had a baby sister a few months ago. She had some trouble when she was born, but nobody told me what was wrong. I am 6 years old and we always had so much fun before my sister was born…. just the three of us. They wanted to have another brother or sister for me. They thought it would be better for me to have someone to play with. I went everywhere with my parents. We went on trips and movies and lots of baseball games. My dad always liked to throw balls to me even though I am a girl. I felt like I could do anything boys could do. My dad taught me that. When my sister was born, she had to stay in the hospital for a month because she almost died. I found out that the doctors are not sure what she has, so that is why I don’t know either. The only thing I know is that my life has changed a lot! My mom and dad don’t laugh very much anymore and we don’t spend much time together since she was born. They are always talking about my sister and she cries all the time. It takes my mom a long time to feed her, because she can’t swallow very easily. Mom is always worn out after taking care of my sister. We don’t talk very much and we sure don’t go anywhere anymore. I wish that once we could have a babysitter to stay with my sister so we could go to a movie or even to go to the zoo. Dad has to work even harder, because the treatments my sister gets costs too much money and he has to work extra hours. I don’t know what to do. My parents look so worried that it scares me. I think it would have been better if my sister wasn’t born, but don’t tell anyone I said that!!!!!!

Story One

It’s not easy being a sibling of a kid with a disability. Sometimes my parents are too busy with my brother because his disability takes too much time and they are too tired to do anything else.

They have little time left over for me or even for themselves.

Too many times, my turn never comes, because I don’t want to bother my parents or even remind them when they promised to take me to a movie or to see my baseball game. I do notice that my little sister has lots of temper tantrums when she doesn’t get her way. She really gets their attention. Still, I don’t want to have temper tantrums to be noticed. I do best when I stay busy or away from my house, playing ball.

I don’t want to cause them grief. They have enough on their plate, especially mom. She seems to be the one that does everything. Dad helps out, but his job keeps him really busy. I want to help as much as I can. Helping mom put my brother in his wheelchair is a job I like to do and I know mom really appreciates my help. I know my mom really likes it when I go with her to the market and I push my brother’s wheelchair. He’s a good guy. He can’t do very much, in fact, he can’t do anything. I know this doesn’t make sense, but sometimes I feel mad at him, then I feel guilty. I feel sorry for my mom because she has to do almost everything for him.  I don’t think we have very much fun in our house. Everyone seems so tired and crabby. Sometimes I hear my mom crying at night. I try and make my family laugh and when they do laugh, I feel great! I only wish they would laugh more.

Studying Child Development in undergraduate school, I certainly know of the child’s basic, developmental need to grow beyond the “self” and begin to understand, identify and appreciate similarities between individuals. This is a fundamental skill necessary for a child to grow and develop in a healthy way both emotionally and socially. These goals must continue to be taught and nurtured always.

Yet, I can see that one potential problem in teaching children to “celebrate similarities” is that it is often measured by some “norm” or “yardstick” – she walks like us, he looks like me, she plays the same game that I do, he is the same color as me. What happens is that children often learn that similar equals good. Dissimilar, then, equals different, the other, not as good or “right”, less then.

Perhaps we need to take a look at giving at least as much attention to consciously celebrating diversity and putting value on it rather than explicitly or implicitly stressing similarities. Diversity is good. Diversity is needed. Diversity adds value to the world. The “other” is good. The “other” is needed. The “other” adds value to the world. The “other” is also part of our reality. We must acknowledge, respect and appreciate the fact that humanity is diverse and richer because of this diversity.

The authentic development of each and every child and the mutual respect for all children is at stake.

In our parenting programs, we must stress: Each and every child is unique and that this uniqueness should be treasured regardless of perceived ability. One can find strengths in each and every child regardless of similarities or differences.