Are You A Parent of A Special Needs Child?

hoolibug

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The name is Hooli.

I just feel like I should write something here since something hasn't been written in a while.

First off I want to let you all know that I am a parent of one special needs kid. My child is a medical miracle whom I know came from God. When my child was born they had a blue spell. Which led us to bad news, to worse news. Just after 8hrs of giving birth to my first child (first so far) we realized they had a serious heart problem. The hosptial didn't have enough or any of the proper equipment so we had to transfer to another bigger hosptial. Once I was released to go home we headed to the other hospital. There we found out our child had a whole in it's heart and a missing valve. This would require close monitoring and surgery (and surgery throughout her life). Imagine being 8 days old and having open surgery? We were transfered to the last hospital to have surgery. I remember crying and praying and repeating that pattern for hours. Finally when the time had come my family and my ex walked down the hallway and met the doctors halfway. God spoke to me "You've done all you can, let me take it from here." Kinda like I met him half way and he was going to carry the rest. I almost thought I saw two glows or brightened color around the doctors as they took her back. Even as I'm writing this I'm getting chills and crying. I have never seen God so clearly.

During her first operation the machine failed and they had to slow her heart rate down to 10 beats per minute! I know that though the machine failed, God didn't. She has DiGeorge syndrome. 1 in 2000 live births will get it. A 10% chance it is genetic and 90% it was an accident. For her and her children this will become a 50/50 shot.

I'm happy to say that today she is a toddler and yes we go through strife and we are and never will be out of the woods.

I know what it's like to sacerfice your body, your life for your children. Children to me are extra special and one day she will understand that she is special. I will tell her that being special is better than being average. I don't know what the purpose is of having children born with dieases are but they have I believe a very special purpose. I sometimes like to think this is my earthly angel God sent me. I never thought I could handle having a special needs child. I think now because of my child I'm more stronger than I could ever be. I think in a lot of ways God sent her to me and saved me.

I know what it's like to wake up and feel defeated. To feel like you are failing your precious child. I know how much crying in the bathroom or bedroom or quiet moments you have. Maybe you haven't experienced this before.

So why am I writing this you may ask? To testify? You betcha. Why not?
More than that I want to thank all of the special parents out there, mom or dad. Because let's be honest being a parent is a thankless job. I never realized it until I became a parent and being a special needs parent I believe takes an extra 110% to be.

So thank you for all of the hard work. The appointments you run them to. The boo boos you kiss. The cook, maid, the everything in between. Thank you.

Hooli:thumbsup::hug:
 

Brandlynn

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yes, he is very special needs child. He has a really bad immune system and is unable to do the things that every other kid gets, like immunizations. He will have to be home schooled and will be unable to do things that a normal kid would do without the worry of breaking a bone. The syndrome that he has causes hypocalcemia, which in turn causes brittle bones. He is unable to hear in one ear, but you cant prove it by the way he talks and jabbers. They told us that he would be developmentally and mentally slow, but he is actually ahead on his milestones. So my Shadrach may not require things like wheelchairs or anything like that, (if he did, i would love him the same) but due to his conditions, it is like carrying an egg. one wrong move and he is either sick or broke
 
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InHisSpirit

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I have an autistic son. he has made wonderful progress this past year! he will be 6 next month and we have almost mastered potty training and beginning to hear some speech!!! Very proud of all his hard work in so many different types of therapy and school!
 
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Lena75

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When he was 4, he was pretty much non-verbal. Brought him to speech therapy before he started school. Went through therapy for 18 months with no progress and were beginning to think he was mute. Then we were referred to psychiatrist and psychometrist where he was diagnosed with Autism. We tried PECS and that helped a little bit in grades Kindergarten, 1 & 2. Finally in grade 3 (or 4?) he was introduced to sign language with PECS. He LOVED IT! As we signed, we said the words. It took a while, but he caught on and we were finally starting to hear words come out of his mouth! Then, we built up his vocabulary. He now verbalizes what he wants and he has alot of echolalia still. If he hears a phrase he likes or his way of talking about an interest is to repeat it. Over and over and.... lol

He still doesn't reciprocate a conversation, nor does he tell us if he's feeling sick or anything. He's still come a long from what he used to be!

Potty training....oh boy...that's a whole chapter in itself! :D
It took a very long time to get him trained. But, again, symbol pictures, signing and using words is what helped. Along with a heaping dose of patience! :) He's now independent with toileting but we still have to remind him to wash his hands.

So don't give up! It takes time and patience but it will come! :)
 
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InHisSpirit

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I am amazed at the progress my son has made. Initially there was a theroy he was deaf, but I saw more signs than just a lack of verbal communication. Right now he is repeating phrases or words to get what he wants/needs. He has been in ST, OT, and had an early interventionist at age two. he now has ST, OT, PT, and ABA along with school. he is the hardest working child you will ever meet. We push him hard but for his benefit, we know there is no cure but we will prepare him to live in an non-autistic world as independent as possible. It is a journey, but I have to say even though the road is tough there are certain joys and feelings of pride we would not have experienced or will experience with our normal developing children. So God sends rainbows in the rain!
 
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Mrs. Luther073082

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I am not a parent, but I peek in this section from time to time. I've worked with special needs children and adults with developmental disabilities. I feel priviledged to have known all of them :) I also used to know someone with DiGeorge syndrome. Thanks for your story.
 
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hwyangel

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My son has autism and he is 27 years old now. There wasn't much known about it then and help was usually in the form of "free medical care" or the opportunity to let them study him. He was in an educational video that accompanied a book called "theraplay". And yes, I remember the days sitting on the bathroom floor and crying. But I wouldn't change him for the world. He can talk now but still doesn't express himself well. He likes girls and his best pick up line is "You can come home and pay my bills".
 
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mamawolf

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i have 2 special needs children one with pdd/odd/heart problems/seizure disorder/and permananent brain damage. one with adhd(severe)/as/odd. life can be very challenging sometimes. there have been times that i have had to peel my adhd son off of a neighborhood kid because he called is younger brother stupid cuz he doesnt know how to ride a bike or tie his shoes and wears diapers. there are many days that i wonder what i could have done to prevent these things from happening to my children, my youngest son follows his older brothers so he puts up alot of flack sometimes. i am doing this basically on my own my bf kind of helps but he doesnt know how to handle them sometimes, my ex husband my childrens father doesnt help very much infact when he visits them we have many behaviors return that had stopped months ago. but i would change my life for anything in the world i love my blessings and love them enough to make sure they have every need met when needed drs school birthday parties therapy a clean house healthy meals and plenty of hands on activities
 
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Bluecheese

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My husband and I had a game plan for our marriage when we were teenagers. We decided we would have three birth children of our own, and then adopt a child who was in need of a loving family. After our three daughters were born and were old enough to discuss adopting a child, and give informed consent, we adopted a lad of nine (now 42) with moderate learning difficulties. He also had behavioural problems and the twelve years he spent in our family were quite tough at times! However, we weren't discouraged and we wen to adopte a 13 month old baby boy (now 30) with Down's Syndrome. He is a great joy to us all, and loved by all who know him. He is quite severely mentally disabled, but a WONDERFUL man.
 
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Rose Block

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One of my friends who live in long island is a parent with an autistic child. He managed his child with patience and understanding. Now his child is doing much better. There are many long island preschool, daycare centres and play schools specially designed for children with special needs. Parents can send their kids to such centres.
 
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KevinesKay

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I have an 18 year old son diagnosed with Asperger's. And he struggles with getting on task at school. He has personal hygiene issues. He's much better now, but he can be so difficult especially when it comes to his younger sisters.

He just graduated high school this month. He's going to be part of a transition program for the next few years. But I worry about him being able to hold a job.

Our 9 year old daughter has congenital adrenal hyperplasia. That means her body does not produce cortisol and aldosterone. She has to take medicine for the rest of her life, if she doesn't, then she could die.

We chose to homeschool her because of the fear that the schools wouldn't know how to handle her if she went into an adrenal crisis.
 
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Odetta

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My 15 yo son is on the autism spectrum, high functioning (doctor's words). He also has ADHD. He does well in school with supports through his IEP. My 12 yo son has severe ADHD, depression and anxiety, and social deficits. He crashed and burned this year. We wrote the initial IEP today, and it's a work in progress. We are in the process of determining what kind of schooling he needs for next year.
 
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