August 23, 2008

Living With Autism

It's already been an interesting morning. The kids started out this morning watching cartoons. The last show they watched ended with the bad guys getting away with some crystal while the good guys let them go. This was apparently more than Bubba could handle. He's my Autistic one. He was so upset by this. He actually started to cry because now the bad guys were going to rule the world. Yes, he understands that it's just a show and not real. But this really went against what he thought was right and he was so traumatized. It took probably 20 minutes for me to find something that finally got him distracted enough to calm down. IT'S JUST A TV SHOW!!! But this is the sort of thing that goes on daily in our house.

Today was probably a little worse because we've had a lot of down time lately, lots of unscheduled free time and not enough scheduled activities. That makes meltdowns come on a lot easier and with more frequency.


Bubba wasn't born with Autism. He developed just fine, right at age level until around 15 months. I can't pinpoint a certain day or moment when things changed. It was a very subtle, gradual thing. It just slowly crept up on us. One day I started noticing that he didn't talk as much as he used to. He didn't have a lot of words at this point, but he could say "mama", "dada" and ask for more food at least.


We moved to TX in January of 2002. I had to leave him with a friend of mine one day and while I was gone he cried the whole time. When I went to pick him up, he reached out for me and said, "Mama, mama". I will never forget this. I remember being so excited because I couldn't remember the last time he had said that. Now, it wasn't like I had been worrying about why my son wasn't talking. It's just at that very moment I realized he hadn't been saying it.


The hard thing about seeing delays in your child is that your first thought is never that there might be a problem. You can always find a reason for everything. It's not denial and justification to avoid the truth. When you look at your child, your sweet, beautiful, perfect child, it just never occurs to you that there could be anything wrong. When he wasn't talking or pointing, we figured it was because we all jumped anytime he so much as grunted. He also had a big brother to do everything for him. When he couldn't figure out how to use a spoon, I chalked it up to him never being allowed to use one. When he would sit and line up cars for hours and just watch the wheels turn, I thought he had a great attention span. When he was behind all the other kids in bible class and didn't even try to imitate the teacher, we just assumed it was because he hadn't spent much time in bible class in WA before we moved. What finally tipped the scales for us was when we thought he had a hearing problem.


You have to understand, my son is now almost 8. At the time, public knowledge about Autism hadn't exploded yet. The extent of most people's knowledge about Autism was limited to "Rain Man" and some movie with Bruce Willis. The Autistic people in these movies were either non-verbal or used "echolalia"-they just regurgitated alot of what they heard, especially from TV or movies. They were very anti-social, and not affectionate. This definitely did not fit Bubba. He loved to be held and snuggled and to give kisses. His motor skills were great; he loved to run and play and wrestle. At this point, Autism was not a word that was in my vocabulary.


Back to his supposed "hearing" problem. We never thought he was deaf. We knew he could understand some things. But you could yell right into in his ear and he wouldn't even flinch. Or you could whisper his name from across the room and he'd look at you. There was no rhyme or reason. We knew things were definitely going in but we weren't sure if anything was coming out. Luckily, just about every female in TX is a teacher and when I was speaking to a friend about Bubba, she mentioned that I could have him tested for free through the school district. So we set up a hearing test. Everything turned out to be fine. So the next step was to have a team of therapists come to our house to evaluate him. Before they left our house that afternoon they told me that even though no doctor would give an official diagnosis until Bubba was 3 (a practice that has thankfully changed), they believed him to be on the Autism spectrum.


I'm not sure I can put into words what all goes through your mind when you hear that. There was some disbelief. After all, my son didn't fit that profile that I had in my head. Relief because if you can identify what you're dealing with then maybe you can do something about it. What I didn't fully accept was sadness, or "mourning" as I call it (that came later). It was just acceptance and "now what?"


I haven't fully explained what all we were dealing with at this point. It wasn't just that he was speech delayed and we thought he was hearing impaired. I couldn't really take him anywhere or leave him with anyone. He would throw these screaming temper tantrums and he would spend an hour hitting his head on the ceramic tile in our entry way. You couldn't console him. He had no ability to communicate. He couldn't talk, he didn't point and he knew hardly any sign language. If he was wanting something, it was an absolute guess as to what it could be. At least with a new baby, you eventually learn their different cries and what they each mean. With Bubba, it was a constant scream.


A lot of Autistic children tend to be hypersensitive to things-noise, touch, textures, light. But Bubba was actually the opposite; he was hyposensitive. He needed lots of deep pressure hugs, didn't care if sand was in his eyes, mouth or diaper. He never seemed to feel pain. I remember walking to our car one day and when I put him in his carseat, his knee was all bloody. Apparently he had fallen on the sidewalk and never even fussed. There was no concept of danger. He didn't comprehend that he couldn't just walk off the end of the bed or a stool or the sidewalk.


He was also a runner. He would take off running and the only way to get him back was to chase him down. He would not come back to you if you called him. This would have been hard enough but I also had his brother who is only 20 months older. Baby locks and those doorknob covers never even slowed him down.
Somewhere along the line, he also stopped sleeping. His body didn't have a natural cycle that we take for granted. You know, it's getting late and your body starts to get tired and it tells you it's time to go to bed. He didn't have that. It would take hours of wrestling with him before he would finally fall asleep from exhaustion. And if something were to wake him up at say 3:00 in the morning, he was up for the rest of the day. And if he was up, Mommy had to be up.


There were so many days that I went to bed crying. Sometimes it seemed the only thing that kept me going would be one hug from Bubba or one of his gross, slobbery kisses.


Over the years, I've had many discussions with God about this. "Why Bubba? Why me? What were you thinking?!" I'm always amused by the comments from other people. I'm sure they mean it or are at least trying to comfort me. But someone always says, "God only gives a child like this to someone special." No offense to all you sincere people who have said this but it makes me want to laugh. There is nothing about me that makes me anymore capable of handling this than you. The only reason I'm able to deal with everything that Bubba can throw at me is that he is MY son. If he was yours, you'd find a way to deal with it, too. You wouldn't have a choice. You love your children. If Bubba was yours, you'd find a way to deal with the biting, kicking, screaming fits, sleepless nights, comments and stares from others, the frustration and feelings of helplessness, depression, guilt, sadness. You, too, would read everything you can find about Autism until you find yourself educating your pediatrician. You would give up social events for a few years until you knew that you could be gone for more than an hour without a babysitter calling you to come back home. Whatever it took, you would do it.


I don't believe that God chose me to be Bubba's mother because I was some great person who could handle all this gracefully or even better than others. However, I do believe that in dealing with his Autism, I am becoming a better person and a better mother. I have more patience than I would have ever thought possible. Every accomplishment is cause for celebration. I am alot more aware of the little things that go on because, for a long time, the little things were all I had. If I hadn't gone through all this with Bubba, I wouldn't have recognized similar sensory issues in his brother, Howdy.


When you speak to someone who is dealing with a disability or even some kind of tragedy what you hear so many times is, "It's not the way I planned it, but now I wouldn't have it any other way." It's true that it's not the way I would've planned it. But I have to tell you, in all honesty, I would have it another way. I know that God is accomplishing great things through us and our journey and our dealings with other people because of Bubba's Autism. But if I had a choice, even now when he's almost 8 and doing unbelievably well and better than our highest hopes, I would still choose not to deal with Autism. I've never heard anyone say that and I've only ever told my husband. I often wonder if there are other moms who feel the same way. I feel no guilt in saying it, it's the truth. Instead of being praised for "rising to this challenge" that God has given me or being thought of as someone "especially chosen" for this task, I would prefer to be the mother of a "typical" kid. But God has other plans for me and I believe He chooses better than I ever could. I often send up a prayer of bewilderment at His decisions but it is His decision nonetheless. I love my son and will spend my life making sure he grows up to be everything that God wants him to be.

1 comment:

  1. You walk a road that not many people can, with strength, and grace and patience. We all love Bubba, just the way he is. We are very proud of the mother you have become and the son you are raising. We love you honey.

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