Wednesday, January 02, 2008

More of the Story...Our Fight With Autism

In January 2006, we took our kids in to be evaluated for therapy at 14 mos old. Honestly, I was really nervous about it. No one wants to hear that their child is anything less than perfect, and I suspected I was going to hear that about one of my children. I was very concerned about Kyan. He was not speaking or walking yet. I was midly concerned about Kynsie. She wasn't speaking or walking yet either, but seemed to be less quirky than Kyan. She was also much easier to deal with. I wasn't worried about Braylen at all. He began walking right after his 1st birthday and hadn't stopped. He said Mama for me and Bah-bah for Barbara. He was also very engaging and seemed to me the typical toddler.

Unfortunately, my assessment was way off. I learned that Kynsie had the 'speech' of a 3 month old. Acutally, she had no speech. Neither did Kyan, but somehow he measured closer to 6 mos. Braylen had 2 words, which put him more in the 9months range. Much to my surprise, and dismay, they all qualified and were recommended for speech therapy.

But apparently, there was more than a lack of speech that was worth noting. Kynsie & Kyan also lacked interest in functional play. Meaning, they had no interest in actually stacking rings on the ring stackers, or playing with any age-appropriate toys. Kyan just wanted to drop things over and over and over and over. I naively thought this was a quirk of his--A cute little Kyanism that I would tease him about 15 years from now when his girlfriend is sitting on my loveseat. I thought he simply liked the sound of different things tapping our hardwood floors. Kyan would also spin things over and over and over again. At the time I would have told you that he was concentrating on the task at hand...getting the ring to spin properly. I see now that he was compulsive about it. Still is some days.

As it turns out, he was stimming.

Definition of Stimming (stim): stimv. to self-stimulate; (specifically) among autistic people, to fixate on a comforting or compelling thing or action (such as rocking or humming); to perseverate. Also n., a (self-)stimulating thing or behavior.

Then came worse news. As concerning as Kyan's situation was, apparently Kynsie's was even more alarming. She was severely delayed over all. She did not show interest in toys, and simply wandered around the room. She would not allow for therapists to help her play with toys, and spent much of her time bouncing up and down on her bottom, wagging her head from side to side repeatedly, or spinning around and around. We thought her bouncing on her bottom was cute. The other behaviors were kind of odd, but I did not know the significance.

Kynsie made good eye contact and never got in trouble. She was the easiest of my 3 to take care of. She was never mischievious at all, and rarely needed me like the boys did. She was loving...toward me, Brandon and Barbara only. We just figured she had a mind of her own and did things on her own terms. Even as a baby, she was very intolerant of certain people holding her. There for a while...months, she really didn't like me that much. I was offended by her strong personality, but secretly figured this was some weird twist of kharma that I more than earned in my former life (pre-babies).

As it turns out, all that bouncing, twirling, rocking and head-wagging was stimming. And her lack of interest in play and people, was yet another sign that something was terribly amiss.

Before I could absorb or even half-way process the idea that these Experts were "Very Concerned" about my precious children, and their quirky behaviors, words began Kamikazi attacks out of the blue.

"Autism", "red flags", "sensory integration disorder", "developmental delays", "autistic characteristics", "significant speech delays", "lack of appropriate & creative play", "low muscle tone", "stimming", "arm-flapping","spinning"...

All of these words dive-bombing me, a perfectly naive target. Dark clouds swallowed me as they loomed over my oblivious children who were playing in the floor. "Autism" is such an ugly word. It strikes fear in the hearts mothers every day. Hearing that word in the same sentence as my child's name is something that I will never, ever forget. Keep in mind, that this was not a diagnosis. Merely the mention that they were concerned about Kyan and HIGHLY concerned about Kynsie.

I wanted to vomit. I needed to vomit. I had to purge myself of the wretched words that had just attacked my family. I felt betrayed. How could I not have known? The light came on, and I was horrified by my ignorance. I was devastated, afraid, and completely clueless about what to do next. My soul hurt. Now what??

After that, Kynsie and Kyan were also recommended for Occupational therapy, and eventually physical therapy. In addition, we would have a therapist in our home for 2 hours per week. 9 hours of therapy per week total. The logistics of it alone were a nightmare.

My mom swears that I would charge hell with a water pistol, and some days, I think she is right. And so, I dove in head first determined to save my children from the nightmare. Anxiety chewed on me as every moment of our day became therapy. From eyes open to eyes closed, we were on a mission. I have faced few things in my life that I could not tackle if I was just willing to work hard enough. Surely this would be no different, right?

So I began reading everything I could find about Autism, Sensory Integration Disorder, vaccine damage, and anything that seemed remotely pertinent to our quest.

To be Coninued.....


gwendysue said...

Sunny- isn't it amazing before we have children how we think that we have been through so much. We didn't really have a clue did we. Nothing can prepare us for when we hear something might be or is wrong with our babies.

MB said...

Thinking about your family. Would love to visit with you and hear more.

Susie at C-N said...

Sunny, I have been reading about your battle with autism. My heart goes out to you. I wanted to share with you that my sister's son is autistic. He is a 7 year old second grader and doing great. Jesse is an outstanding musician, has mechanical ability, very organized and does well in school. My sister has been an inspiration to me through all she has done. Jesse has come a long way with his social skills and is not the shy quiet child he was a few years ago. If you would like, I could give you my sister's email address and you can discuss some things with her. She has other mothers she has stayed in touch with and now also my cousin who has a grandson that was just diagnosed. Let me know if you would like her email address. She really has been a wonderful mother for Jesse and I am so proud of what she has accomplished with him. Take care and my prayers are with you.