Trevor

Trevor
He loves pin-wheels!

Friday, March 4, 2011

I haven't written much the last little while. I caught Trevor's cold.  I am finally recovering from a respiratory infection-- at least it wasn't full blown pneumonia like Trevor.

Since I last wrote a beautiful little boy with autism died in a tragic accident. His family lives just a few blocks away and they attend our church. He was 10 yrs. old and wanted to be baptised, although he didn't need to. The elders had been working with him to prepare.  Because his mother was single the elders had to bring a member along to the visits and my husband was lucky enough to go along for several visits. The elders had been teaching him to pray properly and apparently it had been a struggle.

Sunday evening he was asked to take a shower. He decided to take a bath instead and didn't tell anyone. After a short while his family started to wonder where he was and went to check on him. His uncle, who was living with them to help with His care, found him drowned after having a seizure in the tub.

This child was loved by many many people. His family had done everything in his power to give him a good. life. Raising a child with special needs is more challenging than I can say. As a mother of a child with autism who has sacrificed many of my own goals, needs and relationships I cannot imagine losing the only thing worthy of that.

We attended the funeral. At the viewing Trevor was very quiet. It was like he knew that we were somewhere special.  The little boy was dressed in a little suit. He looked handsome and peaceful. He was holding a little orange matchbox car in his hand (probably his favorite). It was EXACTLY like one that Trevor plays with. Suddenly the moment became very real for me. This could easily have been my son.

Inside the coffin was taped the instructions for how to pray, a picture of his cat, an old ratty stuffed animal and pinned to his shirt was one of the missionaries' name badges.

It was very emotional and beautiful. I was very happy that we were able to go and remember this amazing little boy's life.

We have heard about many other deaths and serious injuries of autistic children in our community. Last summer a child somehow fell out of a window. You are probably thinking that the parent was to blame, however many of these little kiddos have something called SPD-- Sensory Processing Disorder. Some kids require more 'input' of their senses to feel regulated. This could include seeking out really strong odors, or eating things that are very flavored (not even always edible things). They may like to be up high and jump off of high things-- and because they have a very high tolerance for pain they can get injured and be eager to do it again. They often like unique textures or need to experience things in their mouths or touch things that are hot. Trevor likes to have his body squeezed very tight, especially his head, and he insists the TV is always on. Sometime it is very hard to find ways to keep them stimulated and so they go searching for things that often are very unusual to someone not familiar to the disorder. Trevor has this disorder.

 As you can imagine there are also kids with SPD that have the opposite problem and cannot stand very much input-- they hate colorful things, many foods, noises, smells, fabrics etc. Trevor has an unusual form of SPD, where he has both a huge need for input and major aversions to some stimuli. We never know from day to day, minute to minute what his body will need. He has a lot of tantrums, often violent because he cant tell us what he needs or what is bothering him.

Maybe this mom had done everything imaginable to keep her child from the windows-- child proof them, blocked them but, his desperate need for input just took over and he finally made it out in the split second she wasn't looking.

Another child was actually taken from his family. He 'needed' to be told by his family any time they were leaving the house or he would get very upset. One day his mother ran out to the car to grab something and thought he wouldn't notice and when he did he split his head on the fireplace mantle. I could totally see myself thinking-- 'well I am not actually leaving and he is busy doing something' etc. and the same thing happening to me.

You can't imagine the pressure I am under and the anxiety I feel raising a child with no ability to anticipate danger, who enjoys pain, who either loves or hates almost any sensation or noise-- and on top of that cannot communicate. Any parent is destined to miss something eventually.

I have seen trevor try to chase cars, get into the washing machine, run for the pool without me, bang his head, climb on everything imaginable, jump off everything imaginable and much more.

One glimmer of hope it that Trevor is learning to point in school and I am so excited about what that will do for him. He is also learning to respond to his name. I am so excited!

1 comment:

  1. Oh Brittany! That last paragraph is great news for our family!! Good for Trevs! Ahh I just love him so much! Let me know if there is anything I can do for you at all.
    Also, Im so very sorry to hear about that boy in your ward. God be with that family! Im sure that felt very close to home. I hope they are doing ok!

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