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zenele's avatar

Do you have a special child? Or know of one?

Asked by zenele (8242points) May 26th, 2010

I’ve been reading about Autism and Asperger’s lately. Also textbooks on Dyslexia.

Would you share your story about raising a kid with special needs?

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14 Answers

Simone_De_Beauvoir's avatar

My ex-husband is an aide to an autistic boy. He has been able to improve many of his functions through taking him out into the world, playing sports with him and making sure he attends normal kid stuff like baseball games and movies.

Cruiser's avatar

My son has ASD or ASP which is Acute Sensory Perception/Disorder and I have come to learn it is part and parcel to other more acute disorders like Autism, Aspergers type syndromes. It was rough for a while as we just couldn’t understand why he reacted to smell, touch and sounds so much! Loud crowded rooms would put him in a panic, he wouldn’t wear certain clothes and had the sense of smell like a blood hound. Needless to say we struggled with his aversions not knowing why he was so wound up over these, to us, relatively minor issues and when we finally figured it all out we understood these internal battles he was fighting.

I feel for any parent who is dealing with these problems as my son suffered needlessly for so many years.

gailcalled's avatar

My sister’s daughter’s middle son, aged 4, is on the autism scale of disorders. Luckily,NYS has excellent early diagnosis and intervention. For two years he has gotten 40 hours of at-home OT, BT, PT, ST, paid for by the state.

He is doing very well, but improves in zigs and zags rather than linearly. And no one knows what the future holds. He will enter a special school in Sept.

There is the documentary about 4 yr oldRowan Isaacson who responded to horses; his parents took him to Mongolia. The three of them rode from shaman to shaman.
At 7, Rowan is still riding regularly at his home in Texas.

And there is another story about Beau King (also 4), who felt liberated and happy under water.

Cruiser's avatar

@gailcalled I don’t know if you saw it or not but there was a fascinating documentary on this Dr. Temple Grandin who is Autistic but has championed all sorts of therapies for people with autism. The documentary was about her unique ability to see patterns in life specifically in cows and animals and was just incredible to watch.

gailcalled's avatar

@Cruiser: Thank you. My sister and her daughter and son-in-law know and read and watch everything. They attend the DAN conferences. I am the assistant researcher, but I know that Grandin is the model everyone strives to emulate.

hug_of_war's avatar

I work with severely disabled children, most with mental retardation and another issue (autism, cerebral palsy, seizure disorders, other syndromes/disorders). Even with the help they get, what the parents deal with is staggering. Imagine a kid with such severe autism they have never reacted to their own name, a kid whose walking is so unstable they wear a helmet, a deaf child who will hit you and pull down his pants in public, a girl who will bite you when you say it’s time to go to the bathroom, or a 16 year old who will scream in the mall that you are abusing her.

I am being evaluated for Asperger’s myself soon and my parents have always treated me different from my siblings. I can’t stand to be touched most of the time, I get so oversensitive to sounds I want to tear out my cochleas (organ of hearing), and I get extremely anxious at changes as small as not being able to sit in the same chair everyday at my college’s library, I’m extremely oversensitive and can cry at the drop of a hat, I have always been a very difficult child always needing things to be exact (if you said we’re leaving at 6, I would freak out if we left at 5:58 or 6:01). Really I don’t know how my even mild symptoms wouldn’t drive a person crazy.

rangerr's avatar

My sister has cerebral palsy and epilepsy. She turned 16 in November.
The right side of her brain is missing from a stroke she had when she was a baby.
She can’t walk, talk or use the left side of her body. All she likes doing is lying on the floor listening to Barney. So 24/7, we have Barney on the TV in her room.
Her right arm is very strong because it’s the only arm she can use, so it gets dangerous.
She broke my mother’s foot by throwing her sippy cup at it. She pulls hair, she bites, she hits. She’s had over 13 major hip surgeries, she’s had open heart surgery, and close to 30 smaller surgeries to try and fix her bones.
My mom has always apologized to me for “putting me second” for our entire lives.
I always got confused when I was younger by that because I never noticed that I was being treated differently. I just assumed that everyone had the problem of having to put a one kid first. But even when I started realizing that I essentially had my “normal” childhood taken away from me, I got frustrated. I got mad that we couldn’t go on vacation. I got mad I never got to go anywhere because “Kimmie wouldn’t like it”. I got mad that I couldn’t play with Kimmie because she’d just beat the crap out of me.

It wasn’t until a few years ago, that I realized how lucky I am to have her as my sister.
She was in the hospital for about 3 months, and we were very close to losing her.
It took her almost dying to make me realize that I’m glad I didn’t have a normal childhood, and I became really proud of having her as my sister. She’s made me understanding, patient and more caring towards people than I probably ever would be.
I’ve learned so much from her.
She’s not doing so well right now.
The doctors aren’t expecting her to make it past this summer but they also said she wouldn’t make it through May, so who knows.
It’s been incredibly rough and frustrating living with her, but I wouldn’t change my life for anything.
She’s the best thing that’s ever happened to my life.
And I love her. d’awwww.

zenele's avatar

{{{ hugs all around }}}

WillWorkForChocolate's avatar

@Cruiser I think both my daughters may have something similar to that. Crowds really freak them out and they have massive issues with their clothes. They both constantly complain that their pants or shorts hurt and their socks hurt, their shoes hurt, etc… I know their clothing is not too small and most of their clothes are tagless, so it wouldn’t be a “scratchy tag” issue. I also tend to buy their tennis shoes 1 size too large so they will be looser and more comfortable.

I just get so confused and frustrated when I know their clothes fit properly, yet they continue to complain about their clothing “hurting”. I’ve been wondering about sensory problems lately.

gailcalled's avatar

@WillWorkForChocolate: You should get them evaluated neurologically. The clothing issue may mask more important sensitivities. The dislike of crowds may relate to overstimulation, too much noise and confusion.

I get wild-eyed and search for Exit signs on the rarer and rarer occasions I get trapped in a mall.

Cruiser's avatar

@WillWorkForChocolate What I found is as his parent I have to “anticipate” situations where there may be crowds ie parties, shopping, buses, etc. and minimize these confrontations by allowing extra time for my sons to get comfortable. There were many a times we never made it in the door. But any time you can reduce the amount of stimulants like dressing in comfy clothes, soothing music, a favorite tactile or squeeze toy that I had much better success rates.

Here is a good book to read up on all this.

WillWorkForChocolate's avatar

@Cruiser and @gailcalled thanks for the advice!!

liminal's avatar

Both of my children were exposed in utero to drugs and alcohol by their bio moms. They are both FASD (Fetal Alcohol Spectrum Disordered). The major treatment difficulty we face is finding providers who understand the underlying brain damage that impacts their lives. It has been understudied and many providers have had scant exposure to treatment modalities.

The best way I know how to describe FASD’s impact on daily living is to say it is like the person’s brain is formatted like a spider web. One moment they are doing well and navigating the threads aptly, the next they are falling into the spaces and not sure how to get back on.

At the core, most parents want to love their children well. We worry about them at night and fight for them in the day. We love our children passionately and hope for their lives to be thriving and balanced. One hallmark of special needs parenting is living with intensely compounded exhaustion that other parents face on a smaller scale. Making plans is never a simple endeavor. Finding childcare involves caveats and intricacies that go unconsidered by many. Simple events, like a trip to the park, become complicated deployments. Most life situations and day to day happenings require forethought and planning that other families can sometimes forgo. To forgo them when a child with special needs is involved can be an invitation to disaster. Somehow, this complexity serves to magnify both the joys and hardships of parenting.

liminal's avatar

Journalist David Royko offers a first person account of life with his autistic son that many special needs parents can probably echo.

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