Thursday, April 29, 2010

What do you want people to know about raising a child with a disability?

Lately the following "status" on facebook has made its rounds in honor of special education week...

"People need to understand that children (and adults) with special needs don't have an illness, so there is no cure and it's not contagious. They only want what we all want: to be accepted."

This is so very true.... and it was actually that facebook status I first thought of when I received an email today asking me if I wanted to contribute to an article with the title;

What do you want people to know about raising a child with a disability?

The author is looking to write an article for a parenting magazine:
I am writing an article about parenting a child with a disability. It can be funny, informative, or a form of venting. All I need is a single phrase, a few sentences at most. If I see common themes being repeated, I'll know it's important to include it! It will probably be in a "top ten" format, and I am hoping to keep it simple!

So, in addition to highlighting that facebook status I thought I would also answer that question with my own thoughts...

"Raising a child with a disabilty is just like raising a child have your highs, your lows, your battles and your victories. The only difference perhaps is the extra sense of perspective and the extra dose of clarity gained from that special soul of what is truly important in this life."

But, what about you? What would you like people to know about raising a child with a disability?

I have decided to send the author this blog entry rather than just my thoughts so he can hear from all of us collectively.... if you feel compelled please share your thoughts by May 1st and leave your name.



The Sanchez Family said...

You took the words right out of my mouth. You've summed it up PERFECTLY!

Judy said...

I was trying to come up with something deep and introspective but I'm too tired to think straight ;) I will say that having special needs children gives you the ability to see things from a whole new perspective. You gain empathy for people in general. You are less quick to judge others and you discover unique gifts and talents in your children that you may have overlooked or taken for granted otherwise.
We also celebrate "inchstones" rather than milestones in development or achievement and yet some of those inchstones are celebrated with more joy and pride than that of a Nobel prize winner!
Now I'm rambling but you get the picture!

mlfont said...

Cheri - you put it perfectly! I might add that we don't want to be viewed or treated differently by our friends and family. We are the same people we were before we were blessed with our gift! Celebrate with us, laugh with us, cry with us, but just be with us!
Blessings! Lara

jenhiatt said...

You said it perfectly!!

I would want people to know that it isn't something you can catch. You don't need to be scared of my child or keep your kid away from him on the playground. You also don't need to talk to him like he is a baby. He is a person and understands you! He is not a burden on my family, in fact, he has changed me to my core, for the better. He is much easier than my "typical" child.

Lacey said...

Long time no see!
I just had an experience yesterday. One of my many medical bills came saying not covered, it said mental health benefits not covered. So I called on it and it had been coded under Down syndrome, which is NEVER a covered code. Then I put two and two together, they were calling Down syndrome a mental health problem. Seriously! Thats the least of our worries with our kids. We have come a long way with teaching people that Down syndrome is good, but we still have a long way to go!

Anonymous said...

“I am the mother of only one child and he has Down Syndrome, so I have no comparison between raising a typically developing child and raising one who is disabled. I want people to know that I could not imagine my life any other way. Initially, when he was born and diagnosed I was sad and scared and went through an adjustment process. Interestingly enough though, right from the get go, my biggest fear was how I would react and protect him when others were un-accepting. That is still the biggest challenge. He is NOT always happy. He has become a teenager, prone to being grouchy and I delight in it. He is without a doubt the best and most extraordinary occurrence of my life and it is a privilege to be privy to his growth and to watch him dispel misconceptions and exceed expectations. He has been a wonderful measure of people's integrity and sorting out the true, valuable friends and family from those who are simply unable to accept differences. While since his birth, I always anticipated that there would be non acceptors, I never anticipated the outstanding, sustained presence of others. For that surprise I am so grateful.”

Jessica Baer

Anonymous said...

I think I would say that what people don't sometimes understand is how HAPPY we are with our boy. We are more like other parents than different in the joy of raising our boy and watching him grow as an individual with his own individual spirit.

Edith Shea
Mom of Marshall, a wonderful 5 year old boy who has DS

Anonymous said...

I’m a mom of a Down syndrome boy named Marc Ezekiel Williams. I’m already 42 years old when I became pregnant with Marc, and after knowing that he’s down syndrome on my 14 weeks of pregnancy, I cried “non-stop for 3 days”… I couldn’t accept that at my age I’ll be having a child with disability. So many thoughts raced my mind during that time. Since we’re old parents, what will happen to him? Who’ll take care of him when we’re not around anymore, you know those kinds of emotions and thoughts…But I have to face the reality, especially when I saw his face for the first time. I immediately considered Marc as the greatest God-given miracle to me and my husband. In spite of that heart surgery, medical procedures, and different medications when he was a baby – now we proudly say that Marc, who’s now 6 years old, is very smart and high functioning boy that gave him school recognition as the Best Reader in Class!

Susan Ocampo-Williams

The Mommy One said...

I don't have anything to add to your comments about raising a child with disabilities, but I did want to tell you that I love the photos you posted of Reid. The one of his brother holding him - so proud of his little brother and the one of the graduation gown. Oh my! He is beyond precious.

Sarah Tacoma, mom to Gideon, 2 1/2 said...

Gideon is my joy. We wanted to have a second child and this is the one we were blessed with. I had a mourning period and cried for months after the diagnosis (in utero). But that sadness has been long replaced with pride and love in what this crazy little boy CAN do!

Heidi said...

Cheri - I LOVE what you said. You really did sum it up perfectly! What a great idea and what a wonderful story to write!

Dayna said...

What's it like raising a child with a disabilty?...

It is both challenging and rewarding at the same time..

It is exposure to a side of life that I never knew

It has caused me to slow down and appreciate all the little things in life that before my Nicolas I would have rushed right by..

It has caused me to meet some people that have more depth, more strength, more character than I ever knew possible..

It is a blessing beyond measure, beyond my own understanding and for which I may always question my own worthiness..

At the end of the day, it is truly he who teaches me..

Dayna Osborne

Anonymous said...

My son, Aaron, is 5 years old and he has Down Syndrome. He has a smile that can light up the darkest of rooms, he will high five strangers in the market and even if they're having a bad day, he will make them smile. He is in his room right now and playing with his "Papa" and laughing so hard and being a silly little boy. I absolutly could not imagine my life without him, it would be a dull, boring life!

Ofcourse, like every child, he has his moments and is not "always happy" and I cherish those moments too because that just means he is an average 5-year-old!

Raising a child with special needs has its ups and downs but I don't imagine that being much different then raising a typical child. I think you get to take your time with a special needs child and marvel at every achievement and for that I am extremly thankful, I get to have my baby a little longer!

Kele@ said...

I couldn't say it any better than you, you did so beautifully Cheri! I am so glad you will be sending it in.

Mel said...

Whoops, missed the cut-off. Never mind. I would say that raising a child with special needs is just like raising any child- you never know what is in the future for any child. So to quote the Beatles, all you need is love. Let your heart be your guide. And the other thing is that other people make the difference, and can be the best support or the hardest part, depending on their attitudes, whether is be people in the supermarket or family and friends.