Any of you who know me or have been reading my blog for any length of time know that last fall my youngest son was diagnosed with autism. in fact, it began the same day my dad died. I never will forget driving home, crying, wondering how I was going to tell my mom that her precious grandson was very likely about to be dx'ed with autism spectrum disorder. Arriving home to the news that my dad had very little time left, and to his death 90 min later, I tabled that information for some time. However. Life with the spectrum disorder went on whether or not I shared it. Today in the nursery i had the opportunity to share just a little bit about it with one of the other ladies there, it was helpful just to help someone else understand even in a small way. so thats what I'm here for. Maybe if I can help YOU see what goes on in our house each day, what seemingly small things can become big struggles for James, for us, and what every day things that are miracles to us, well, maybe it will help all of us gain an understanding of what these children, and adults, deal with.
Autism often looks a lot like a poorly parented child. A child taught no manners, no respect, nothing. As the mom of an autistic child (very high functioning, but autistic) I frequently feel the judgement of those around me as my son makes demands rather than asking kindly for something. Does he get those demands met? not a chance. Just like with any other child, he has to ask nicely if he stands a chance of getting what he wants. However, his brain is wired differently and repetition doesn't do the same thing for him it does for others. He continues to demand and perhaps will for the rest of his life. We're working towards not, but it could be that the people around him will simply have to learn how to ask for better from him. Reminded, he can ask as nicely as anyone else, and will for the most part. (we'll talk about THOSE days later). Many areas are like this. He acts/responds and then I/someone must remind him to act/respond in a more socially acceptable manner. Many times he does so with just the prompt, so long as he is comfortable in the situation. Sunday school, cubbies, Keagans house, places he spends enough time that he has become comfortable in. If he is anxious, then it's harder for him to change his actions, and understandably so. Again this is an area that people don't see. That lack of "seeing" is one of the toughest parts of autism. Others can be very judgmental when they see a child acting out, and autistic kids do a lot of that. Many things raise J's anxiety level. Someone speaking to him and expecting a response - something as small as eye contact with him. A new place where he is expected to do more than just hold my hand and walk though. New children he isn't familiar with, or a group of more than 4 or 5 children. Loud noises, boistrous children who may attempt to take the toy or item he is holding, or even a child who may try to strike up a conversation with him. The list is endless, and each time we walk out our door he has NO idea which of these he may be facing. Is it any wonder these children prefer to stay home? They like to know what they are doing, when, and very often, why! Change is scary to them, it's very lack of predictability makes it hard for them as again they are faced with unknowns.
Food is tough. Many, I think most, autistic folk have food sensativities. It's not a matter of 'I dont like.." it's a matter of my mouth simply can not tolerate that food in it. Autistic children have starved themself to death (yes, it's medically recorded) when parented by the "eat it or starve" method. They simply can not tolerate some foods and often times the list of what they CAN eat is very short. At the time that J was dx'ed, his list consisted of
bananas
peanut butter (smooth) sandwiches (no seeds in bread)
tomato soup with crackers
green jello (no other colours)
mashed potatoes.
Each meal consisted of at least one of these items so he could end the meal satisfied. Each meal had at least one item NOT on his tolerated list that simply sat on his plate. He didnt have to eat it, didnt have to even try it, he just had to tolerate it on his place. Seven months later his list is a little longer. He can't eat mixed foods. Like soups and stews. There is too much anxiety that there might be something in there that isn't tolerable. And who really likes throwing up? He decided one day to give a piece of lettuce a try. His lunch hit the floor before either one of us knew what was happening. So, we pick out a little of each food in the soup and serve it to him "unmixed". Sometimes he eats it. To some, giving the child that much control over food seems inconceivable. It did to me at one time. But he didn't choose this autism spectrum disorder any more than I did. He's not choosing to be a child difficult to raise. His frustration from high anxiety levels aren't something he can do much about at 5 yrs old. Yes, we work on it, and he IS learning some coping skills, but it's certainly not going to come overnight, and it's certainly going to be much harder and longer coming for him to learn to cope away from home - which is where everone else sees him, where it matters more.
I sometimes with i could make the whole world understand my son. Understand he's not a 'bad kid', that I'm not a "bad parent", but that life has simply dealt this hand to us. that God, for a reason I may not know this side of heaven, has seen fit to give me this precious child.
We've seen some pretty big stuff lately too. A few weeks ago in SS James handed out the stickers to the other kids. Regular stuff... for most kids. Miraculous for James. In Nursery today he instandly bonded with the man in there . He played with him for most of the hour. Loved him. James does NOT take to anyone like that. It takes him weeks to get familiar enough with someone to speak to them. Another adult initiated play with him and he reciprocated with a smile. HUGE! Interestingly enough, while we're seeing these big things happen we're dealing with much more behavioural issues in other areas.
I could go on. I will go on. Not tonight. Later....
