Autistic Journey

Hope

Understand

Love

Unique

I saw this here and it really just says a lot about living with Autism. 

I knew there was something very wrong about Wes' development very early on.  While it was odd how he ate ok and then regressed, it was really when he failed to make progress in sitting that started my concern.  Still, after having Taylor, whose development was also significantly delayed, I didn't let my concerns get out of hand.  We already had all the support available for kids like Wes and Taylor, so there wasn't really much else to do.

Around the time he turned 18 months, he still had no words, he didn't walk, barely crawled even, he didn't have interest in objects around him and wasn't eating solids.  I really started to worry that we were dealing wth a beast of another nature.  I had no clue what it could be, but I knew it was something new.  Wes had become increasingly frustrated by things.  I would define "things" for you, but he just seemed like a really frustrated and angry little kid.  We couldn't pin point any one thing that was making him so frustrated. It seemed very much like life itself might be the problem. I decided that I had to do something, I had to give him some means to communicate with us.  Thus was born my obsession with sign language. 

I started watching videos online to learn words I didn't know, and videos geared towards kids like "Signing Time". I started to sign everything I said. I hoped that if Wes couldn't really understand us, that the signs could at the very least reenforce whatever we were trying to communicate.  I hoped that he would develop some signs to give back to us.  I felt strongly that his frustrations were born from an inability to communicate with us. In that respect, it turns out that I was probably on to something.

Wes' frustrations grew stronger and stronger, and by the time he was around 20-22 months old, he was repeatedly (and often) throwing huge violent tantrums and cause self harm in the way of head banging.  Initially it was incredibly frightening as he had no inhibitions what so ever.  He would be perfectly happy, singing, whatever, then the next second he would fly into a rage and full force throw his face into the floor or table edge. We started padding the edges of the chairs and tabes and restraining him out of fear that he would do some serious harm.

I took him to his doctor because I was so worried about how much he was hurting himself, and I was totally frustrated when his doctor was more concerned about an apparent weight loss.  True, Wes hadn't been eating well, but as far as I was concerned, that was because he threw a five to ten minute full on assult style tantrum every two bites of food.  Many of his tantrums and head banging episodes took place at the dinner table.  We tried everything from eating in the living room to weighted chairs, highchairs, adaptive silverware, nuk brushes, chewys, and more.

It was clear to me that I was loosing him. I was loosing hope that he was in there somewhere.  I had a child who was growing (though not at all at the rate he was supposed to) and couldn't provide me with the most basic communication of need. Yet, he would stare into my face, engage me in facial games. Looking into his eyes was like looking right into his soul. Wes had the biggest smile and warmest blue eyes.  As long as you or some other person was looking at him, he was happy. He didn't care if you were jiggling bells or rattles or soft fuzzy blankets, he wanted to see you. As his mother, I was filled with so much love.  It was simply th best to stare into his eyes all day, but when I wanted to cuddle him, he would push away. He wasn't a kid that would climb up and lay on or near you.  I look back and see that there are not a lot of photos of us holding him, and I can't help but see how he didn't enjoy being touched. I did not see this at the time.

Just before Wes turned 3, he was evaluated by professionals in the school district to determine the need for special education services.  It was there that I recived the first indication that he exhibited soft signs of autism, namely a fixation on spinning and the sense of "not reallying being there". I eventually took him to his pediatrician again, asked for testing to rule out absent seizures.  This was accomplished by completing an EEG study. With these studies proving to be normal, I started looking more and more into Autism.  The more I read, the more I saw Wes' picture being painted.  Levels of understanding were beginning to take root.

We have always appreciated the uniqueness of all of our children. There just is no comparison between typical kids and ours. Yet, Wes has comanded so much more from us. Before the tantrums began, I took the children out quite a lot.  Our inablility to effectively curb or even predict Wes' outbursts really hit our family much deeper than we appreciated at the time.

Last year was the year of discovery for us.  We learned that Wes was most definately in there.  Since beginning treatment in March 2013, he has gained the ability to form long complex sentences, convey opinions, unique thoughts, and demonstrate his frustrations in words.  All of this took a ton of practice and a lot of modeling.  He can recognize his own writen name, and can spell his name.  He can identify all the letters of the alphabet, and even though it took a really long time, he can count to 20. He finally knows (well he probably has known it for a long time actually) but he can finally identify himself as Westli and objects that belong to him as Westli's things.  He can tell you the city and state he lives in, and is working on his zip code (something we haven't really taught our other children yet). Wes can name all of us in his family by our role (ie, who are your sisters?).  I know that seems so basic, but it has taken him months to achieve. Recently he is showing interest in the games that our other children play, and definately identifies the things that he wants.. including bothering to argue with you when you disagree.