The day I heard my son had autism

[Sheila]

From http://www.cnn.com/2007/US/09/24/jenny.autism/index.html

updated 11:16 a.m. EDT, Wed September 26, 2007



Jenny McCarthy: The day I heard my son had autism

* Story Highlights
* Jenny McCarthy's son was diagnosed with autism when he was 2
* She says extensive research helped her find treatments for him
* Today her son is 5 and able to communicate completely
* Next Article in U.S. »

By Jenny McCarthy
Special to CNN

I didn't know what was going on with my son Evan. One day he was a completely healthy 2-year-old and the next he kept having life-threatening seizures.

Countless doctors and hospitals couldn't get to the bottom of it, and no one could figure out the right diagnosis. We continued trying different anti-seizure medicines, but they either made Evan act psychotic or like a zombie. Finally, I got an appointment to see the best pediatric neurologist in Los Angeles.

I was beyond nervous in the doctor's office. My heart was beating so loudly that I bet Evan thought it was a drum in the next room.

When the door opened and a sweet older man walked in, I immediately felt good. I started telling him about all the seizure activity and what had been said so far about Evan. He listened closely but had his eyes on Evan the whole time. I could tell he was evaluating Evan and his bizarre behavior.

He asked me a couple of questions and seemed very peaceful about the whole thing. I was starting to feel more relaxed as he played with Evan, and then he stood up and opened his office door and told his secretary to cancel his next appointment. I thought to myself, "Wow, he must really like us. This is some big VIP treatment."

He closed the door and pulled his chair up close to mine and put his hand on my hand. He looked at me with sorrowful eyes and said, "I'm sorry, your son has autism."

I just stared at the doctor while remembering all the signs that led up to this moment. I felt each membrane and vein in my heart shattering into a million pieces. Nothing prepared me for this. I couldn't breathe. I wanted it gone. I had been through so much with seizures and psychotic reactions to medications. I looked at the doctor with pleading, tearful eyes, "This can't be. He is very loving and sweet and not anything like 'Rain Man.' "

"Every child is different," he said. "Some aren't as severe as others."

"I don't understand. How can this be? How can you tell just in a few minutes?"

He looked at me and then pointed to what Evan had made in the corner. Evan had taken those ear cones they use to look inside your ears and made the most perfect row lined up across the room.

"Does he line toys up at home instead of playing with them?" he asked.

"Yes, but don't all kids do that?"

"Nope, not all," he said. "And they all don't flap their arms like that either."

I looked at Evan and saw that he was "flapping his wings." I said, "Oh no, he just does that when he gets excited."

"That is called a stimulant," he said.

"A what?"

"A stimulant. Self-stimulatory behaviors. It's an autistic trait," he said.

I looked at Evan and saw him flapping and once again had my heart shattered. I had always looked at it like an adorable Evan characteristic, so cute and unique that I even called him my little bird.

I almost felt betrayed, like I didn't know this child standing in front of me. Everything I thought was cute was a sign of autism and I felt tricked. I guess the doctor sensed this from me because he turned my head back toward him and said, "He is still the same boy you came in here with."

No, in my eyes he wasn't. This was not Evan. Evan was locked inside this label, and I didn't know if I would ever get to know who Evan really was. All the behaviors I had thought were personality traits were autism characteristics, and that's all I had. Where was my son, and how the hell do I get him back?

I turned into a detective, and thanks to a ton of Google research, the support of UCLA and my DAN! (Defeat Autism Now) doctor, I found the treatments that worked for Evan.

Evan is now 5 years old and able to communicate completely. Since we can talk, I ask him questions that I so badly wanted to know the answers to during the crisis. When I asked him why he flaps his arms, he replied, "Because I get so excited and then I fly just like the angels do."

Not all children with autism will be able to make leaps like Evan. Some parents have worked longer and harder than I have, with no success, trying the exact same things.

I have no idea why some treatments work on some kids and not on others. But I beg moms and dads to at least try. I will work my off raising awareness for autism and banging down doors to get answers.

In the meantime, don't give up hope and remember that acceptance of your child's condition does not mean giving up; it's just simply loving your child for being the perfect little spirit he or she is.

That was the shift I had experienced before Evan's healing even began. Faith is what continues to keep me moving forward.

 

[TerryJ2]

Wow.
Very well written.
Which treatment did she use?

 

[Wiped Out]

Thanks for sharing-this was interesting to read.

 

[Kathy813]

She is going to be talking with Larry King tonight at 9:00.

~Kathy

 

[Marguerite]

Terry, I don't know what specific treatment she used and frankly, I don't think it matters. What has worked for us, and what I thoroughly recommend, is to work with your own child in your own way and to trust your instincts. Do not see your child as just like all the others or you will go wrong. Your autistic child has a brain that is learning, often faster because it has to, but in a different way. What works for my son may not work for yours, but SOMETHING will work for yours - it's just a matter of finding it. And some kids simply cannot reach the same level as others - this is a facet of who they are, as much as anything else.

Unconditional love, support, sharing - these work. If you try something and it causes more problems, don't do it. Ease back to a point where it doesn't cause distress. If your child is interested in something, no matter how apparently pointless, then use this as your entry point. Read "Son Rise". I found, somewhere in that big tome with a lot of dross, enough kernels of wisdom to make this a very valuable book. Ignore the emotive stuff if it nauseates you as it did me, and get into HOW they worked with their child. But to not expect any results, because any results you do achieve must be what you are pleased with. Never any regrets that he can't do X yet, simply joy that he CAN do Y.

Meet your child where he is. Sit on the floor and line up toys in your own little row. if he lets you, add toys to his row. Never patronise your child - we made that mistake, on instruction of speech pathologists who were trying to solve the mystery of his lack of speech. He showed utter contempt for us when we tried "simple talk". We still kept our sentences to him simple, but we had to use whole sentences, not two-word shorthand. His rejection of this confirmed for me that inside my boy was a genius trying to find the key to the door. But I couldn't open the door for him and until we could help HIM open the door, we had to expect he was angry, frustrated and bored.

I think the important thing is to WORK with the child. I've seen profoundly autistic kids who are being worked with well; and others who are not. Sometimes all the effort in the world can only get you so far and you shouldn't expect to ever see that child function normally. Every skill you can give him is a bonus. But if you withhold yourself and your involvement in this manner from an autistic child, you risk being the factor that holds him back. One boy I particularly remember - he was the younger brother of my daughter's friend. His mother only had the two children and was clearly out of her depth. The boy was allowed to wander the house whenever, often at night, and would make fantastic sculptures out of whatever powdery stuff would pour. He would raid the kitchen cupboards and pour out flour, sugar, dessicated coconut, rice - and use them to sculpt hills and mountains on his model train layout. Me - I would have locked the pantry, or at least made sure the sugar was locked away, and maybe given him a more acceptable substitute to sculpt with. The family came to visit a few times, she would bring her son and simply sit and chat, allowing her son to wander wherever he wanted in my house including taking and trying to chew difficult child 3's toys. She did absolutely nothing to direct him or interact with him. difficult child 3 was getting increasingly frantic as HIS space was invaded and defiled. So I sat with this boy and one of difficult child 3's educational toys which was a combined jigsaw puzzle with large plastic letters and also an alphabet and spelling teaching tool. And as I sat with this boy and watched him rapidly and faultlessly put the letters in place, I heard him whisper the names of the letters. Now this boy was supposedly non-verbal and illiterate. I pointed this out to the mother who commented, "Oh, maybe they're teaching him this at his special school, but I don't think he is able to understand it, it's just parrot fashion."
And this is another misconception - it used to be thought that any savant skills shown by autistic people were not REAL abilities, simply capable mimicry masquerading as genius in a narrow range.

I heard some time later that the boy had been put into permanent foster care and was now beginning to talk and read. I was not surprised - he had not made the progress with his mother that he should have, because she was beyond caring. The mother had been faced with this crisis in her life and like all of us, had to make a choice - to fight this and work with this, or go under and give up. She chose to give up.
We occasionally see them in the supermarket and hear the latest news. Her daughter had her first baby at 14, the mother is enjoying being a grandma, daughter is back home again after living with her forty-year-old boyfriend for the past few months, the granddaughter is a handful and very wilful but we give in to her, it's easier... you can hear the problems brewing (crikey, you can hear the pot boiling over and putting out the fire!)

It has been said that God gives special children to those who can best meet their needs. Having known this family, I disagree. Instead, I say God gives special children to ANY family, because ALL of us are capable of meeting those needs. The strength is there in all of us, we just have to look for it and make a start. The entire job can look insurmountable, but if you put one foot in front of the other...

When difficult child 3 was diagnosed I felt the bottom of my world had fallen out. It was the one disability I did not understand, which I had feared from childhood when I'd first read about it. But as I have learned I now realise what good news this was. Of course I wish difficult child 3 were a normal boy able to go to school with other kids, to run, play football, go visiting friends, be popular and also doing well at school. difficult child 3 is very like easy child in many ways - I know what a remarkable creature we would have had, without the autism.
But there are aspects to him which are too tightly bound up in the autism, which we would lose if he were not autistic. He also has talents he would not possess, without the autism. he is kind, generous, loving and loyal. Very forgiving. And so much of these qualities too, are part of his autism.

I now see this diagnosis as a good news diagnosis. With any child, there is always a question of just how far this child will ever go. With an autistic child there is always some confusion and uncertainty with this question, but never a "No way will this kid ever achieve anything," because you just don't know. Some people will be pessimistic in their expectations, but you should never let them drag you down. You have hopes in what your child cannot yet do, you have joy in what your child can do. And the joy continues.

Marg