Also, this post is long. I wrote this over the span of many days, going back to it over and over as I went through this journey. Instead of just giving you the end result I have taken you on the journey and thought process with me. It may seem disjointed at some parts and that is because there were days when I did not write anything and then came back to add to it. My hope in posting this is that maybe it will help someone, at the very least, understand that every child and family is different and that their journeys are different.
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Having a list of diagnoses has meant we have a list of reasons why he may be behaving the way he does, a list of suggestions as to how to change undesirable behaviour, a list of reasons why he isn’t like the others. But it’s been just that, a list to attribute behaviour to.
He relies on a schedule so heavily because he has Asperger’s.
He paces because he has anxiety.
He doesn’t do well in large crowds because he has a sensory disorder.
One thing he has been struggling with is managing his emotions, specifically when he is upset or angry. Big emotions are hard to understand for a typical child. Add in Asperger’s, which limits his ability to comprehend the way our world works and limits his ability to learn by example, social cues, and previous experiences and it seems to be about one hundred times more difficult to understand. So he goes to therapy to learn how to identify and communicate emotions but this learning takes time. In the meantime he has regressed to more primitive ways of communication: hitting.
I have gotten my fair share of attacks from Nicholas. We don’t experience this at home much but home is a more controlled environment than school. There are more things to get upset about, more people to bother and annoy you. The hitting has been an ongoing issue and we are lucky that his teachers have been very willing to work with him in this area.
A couple of weeks ago we met with the teacher. School has started and we want to make sure the teacher is on the same page with us and we’re on the same page as she. We talked about his aggression and how we have tried everything we can think of but have not yet been successful in curbing it at school. She described some tactics she has been using to contain him and I mentioned that we hope that he can learn not to this so that these tactics won’t be needed.
“Yes, of course. But this is part of his disability...”
She went on to say that until he learns (through therapy, in class tools, etc) they have come up with some ways to keep him for hurting others and that was ok. We talked for a little while longer but her words kept ringing in my ears. They still are.
Disability.
He is disabled.
He is not fully able to function as a typical human of his age.
I have a disabled child.
Somehow this sounds far worse than a list of diagnoses.
But it sums it up quite accurately.
It’s not a death sentence. He isn’t terminally ill.
Disabled doesn’t mean never being able to survive and thrive.
Many disabled people are fully functional members of society.
Many disabled people overcome their disability.
Disabled isn’t automatically permanent.
Disabled is good. It’s better than any diagnoses. It has hope, room for improvement, a future!
But it’s of no comfort.
“...part of his disability...”
The words ring. Loudly. Randomly throughout the day, while I work. As I ride the bus. As I bag our groceries. As I buckle him in his car seat. As he smiles at me. As I glance into his bed and see him sleeping.
She tossed it out there like “paint on his fingers is part of painting a picture” and “torn knees on his pants is part of playing outside.” So casual, so mater-a-factly.
Everyone else that has given us a diagnosis to add to our list has done so with careful wording, a soft voice, an unsure look trying to read our reaction to the news. She just said it casually, not even looking at us since she was reaching for the mat he is to sit on. She had no reason to be careful and tactful. Like paint on fingers and torn knees on pants, it is the logical conclusion from his diagnoses.
So why did it never cross my mind? Why, in all the things I ever thought about, including the possibility that he might live with us forever due to an inability to care for himself, did the word not cross my mind? How does that make any sense if an inability to care for himself is, by default, a disability?
Maybe because he looks normal. Maybe because I don’t think he meets the requirements for SSDI.
Maybe because I don’t think he actually is disabled.
Merriam-Webster (why do we always go to Webster?) in part, defines disability as: a condition (such as an illness or an injury) that damages or limits a person’s physical or mental abilities, the condition of being unable to do things in the normal way. Webster has a “Full Definition” (my paperback was never this complex) that also includes: limitation in the ability to pursue an occupation because of physical or mental impairment, a disqualification, restriction, or disadvantage. [emphasis is my own]
Nicholas cannot comprehend many life concepts, his brain just doesn’t “get it.” A big one is fantasy versus reality. He can understand that the world of Thomas the Tank Engine is not real and that there aren’t any talking trains anywhere. But it was a long time before he understood. Right now he thinks he actually can bring dinosaurs back from extinction. Even though we have talked about imaginations and story telling and that what is on screen is not real. We’ve talked about how our technology simply cannot do such a thing. He believes he just needs money to buy some things and he can bring back dinosaurs. He believes it wholeheartedly. He is almost 8. There are other concepts like this that he believes to be real even though we have explained and proven that they are not. And I am trying to imagine one of my co-workers telling me a tale such as this with the same certainty that he does. I know I would honestly believe that he is crazy, that he has some sort of severe mental illness and disability.
Obviously slapping someone across the face because you don’t like their laugh is not the normal way of dealing with an annoying laugh. Even though we have all probably experienced such an annoyance and quite possibly such a desire. Yet he has actually done it. Normal people not only know and understand that we can’t just hit someone that does something we don’t like but normal people are have the self control not to do this. This kind of self control is typically learned as toddlers. Nicholas struggles with self control when he is emotionally charged. Something in his brain misfires and there is no reasoning, he is no longer here with us and must physically be restrained. If your child came home and told you that they were slapped for laughing wouldn’t you want that child not only suspended but evaluated for something since that is beyond what you would consider normal for a grade school child? If the answer was that that child had Asperger’s wouldn’t you wonder why they weren’t in a special class with other disabled children and specially trained teachers?
When it comes to learning things, all things, he has to be taught everything step by step. I remember showing my infant how to roll over. He couldn’t do it, he wouldn’t even try in any direction. Put his little arm over his chest and the corresponding leg over the other, tilted his body slightly in the direction of his arm and leg and he waved and shook both but would not continue the motion on his own. So I pushed a little and guided him to his tummy. He was confused. We did this every day, a couple of times a day, for a long time. He was about 7 months at this time. Fast forward to today. We taught him that his plate and fork go in the sink and he puts his plate in the sink. His cup? Nope. We did not teach him that his cup goes in the sink, only his plate and fork. He is not attempting to get out of a chore, he just needs to be taught to put the cup in the sink too. He is told to behave. Then we must list all the behaviours that are behaving and all the behaviours that are not behaving. His world and understanding is very literal and it has taken time for us to get used to dealing with it because it does, in all honestly, sometimes feel that he is being a “smart ass” because normal normal kids know how to take one lesson and apply to multiple situations. We have to keep reminding ourselves that he can’t do that, his brain is programmed in such a way that he is unable to take “put your plate in the sink when you are done eating” and apply it to his cup too.
I could write for days about all the daily things that are challenges or different from normal kids. It seems quite obvious that he does, at least on a very literal level, fit the description of disabled. So again, why is this so difficult for me to just accept? Why does it feel so defeating? Why do I feel like I failed?
Every day I see his struggles, I see his inability to do things like other kids his age, his inability to comprehend the world, his disadvantages. Every day I see a disabled child.
I have always maintained that this, or any amount of diagnoses, would not define him. It won’t be his sole or main identity. He is a month shy of 8, he loves legos and much to our objection, he is into star wars. He likes to play with dinosaurs and wants to grow up to be a construction worker. He wants to marry a girl and have 8 sons and one daughter. He has an adorable giggle and quite the temper. He gets unhappy when he doesn’t get his way, he doesn’t always like bed time. His favourite food is pizza. He still sleeps with his Teddy. When I tickle him he laughs and begs me to stop. When I hug him he hugs me back. He gives me kisses and tells me he loves me. He is inquisitive and a critical thinker. He loves the colour blue except when he loves the colour red. He is fascinated by space and President Lincoln.
There’s a very real and dynamic person inside that little body that is so much more than just autism and a list of comorbid things that make his experience of this world different from most. Is it really such a big deal if he never quite gets how to tie his shoe laces? If he must live tied to a planner? Is spontaneity such a big deal that his inability to cope with it will make it virtually nonexistent in his life a bad thing? Will having a limited menu (that does include healthy foods) really make his experience of life one less meaningful than others? We spend so much time - HOURS of different therapies and continued practice at home - trying to “correct” and change these things that feel so petty instead of just letting him be a child and play, instead of just letting him live and grow. We spend so much time on disability issues that I don’t feel that he is enjoying life. We aren’t enjoying life with our child. And I feel that it is slowly killing the very real and dynamic person inside that little body.
Part of his disability.
Part of him.
Part of a person that is whole and complete and perfect.
And maybe that’s why disabled bothers me. Disability, despite all these “differently abled” campaigns, is forcing the focus on how he is not status quo, making it a bad and undesirable thing. It ignores the very real and dynamic person inside that little body and tells us that he isn’t good enough. And in allowing the term I am accepting the term, I am agreeing that he isn’t good enough.
My child is not disabled or “differently abled.” He understands and experiences our world in a way that is not like most of us so he needs help seeing it our way. There is nothing wrong with that. We are helping him learn our world so that he can assimilate into it. He will never lose his way of understanding things but will also learn how we do. He will never lose how he sees the world but will also learn how we see it.
And he will grow up to be a very real and dynamic person inside a big body.
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