One of my favorite bloggers, This Mom, wrote a post the other day that made me cry. It is not the first thing she has written that has moved me to tears. I still feel new to this whole community and have only lurked at certain sites. I feel a little bit of a kinship with This Mom even though I have never exchanged e-mails or even commented on her blog. Her son, who she calls Fluffy, has Apergers, and also SPD. That's how I found her to begin with. Scott does not have ASD, but when you read things that This Mom and others write about their so called High Functioning kids, they sure sound similar. In fact, This Mom has a book she is collecting stories for called Gravity Pulls You In. The introduction she wrote about a conversation she had with Fluffy was almost word for word the same as an exchange that Scott and I had the day before I read her post. So similar it is eerie. And her son is six and a math whiz and has thoughts he can't stop from coming and, can you believe this, they just got home from a trip to Mexico that her mother organized for her and her siblings, JUST LIKE WE DID!!
So I want to say, like many others did in the comments, that This Mom rocks. She has expressed beautifully what I feel. Last year when Scott had been in OT for about 6 months, there was a non-verbal boy who came after him. Scott would always say hello to him even though he learned quickly that the boy could not actually talk. I used to leave OT and think, that boy needs so much more than Scott, why are we here? And then someone said that it is a therapists job to help a person fulfill their potential. Maybe that is being able to stop chewing their clothes like it was for Scott. Or maybe it is being able to say hello.
See, if your child has a neurological-based type of disorder, there might not be any obvious symptoms (at least to others). It is not like getting a blood test that says you have a disease. A clear cut answer. It is subjective to the evaluator. Matt and I think that Scott could have been diagnosed with ADHD or maybe even Aspergers, depending on when (and by whom) in this process he was evaluated. Maybe, in the future, there will be a definitive test, like the results from a CAT scan, to determine the extent of one's neurological dysfunction.
But it is still relative. I mean what exactly is normal and what isn't? And does it matter? Some of the most brilliant and talented people throughout history have had terrible mental disorders. Matt and I have encountered so many people along the way who think that we are making something out of nothing. That there is nothing really wrong with Scott, so that means that he does not need any fixing. Sure, you could probably go that route, but does someone with less of a problem not require anything? Where do you draw the line? If a child cannot speak it is obvious that they could use some remediating, but what if they just feel things differently? How do you decide who is worthy of being treated and who is "good enough"? At a base level you need to be able to function. After that, it is all about the degree to which you are living a full life. I agree with the people who write that "there is a big world out there and my child has to learn how to live in it."
When we were on vacation, my brother commented that Scott seemed outwardly fine to him. That being around him you would not know that he has any issues. I am grateful that this is true, because I want so much for him to blend in. He has made such progress that I do not doubt that most people would consider him completely "normal". And he is. Maybe. OK, not completely.
What my brother and others do not see, Matt and I notice. The way Scott was crossing and uncrossing his fingers, turning his wrists away from his body in an awkward, uncomfortable way. That he repeatedly asked safe quizzing questions like "what's 2 million plus 8 million?" to remind himself that even though we were far away, he was still in control. How he was punching and body slamming into the beds not able to stop himself even when we asked him to over and over again. How he still didn't know which direction to go toward our room after we'd been there for 5 days. How he never used the paper napkin in the dining room. That he wouldn't put his head under the water for fear of getting swimmer's ear again and having to endure the pain and the icky ear drops. That he was upset about the vibration in his ears when the plane was taking off and landing. That he kept looking at his feet and trying to time his footsteps to avoid cracks in the sidewalk. How he couldn't just sit next to his cousin without actually touching him.
In general, how much harder it is for him to just keep it together. Sure it has taken Jane a little while to get back into the normal routine, but for Scott it has taken longer, and he is twice as old. Maybe it could just be called their personality. That's fine, as long as we are still trying to help him manage.
I don't want people to see these things that we see. I am over wanting validation from people that he actually has problems. Because it doesn't even matter any more. It is all mixed together under the banner of Parenting. Giving your child the support and guidance they need to grow into well adjusted, functioning adults. Not to "fix" them, but to help them. Not to solve all their problems but to give them opportunities to work it out themselves. To hold their hand when they need it and let go when they are capable.
It is a fine line. I want Scott to like himself, not in spite of the SPD, but because of it. I wish that I had understood when I was younger that I was different. Not in a bad way, but in a way that might mean I had to make adjustments others did not. And that I could trust myself and my feelings. I knew I was smarter than average but I never understood why I felt things more intensely. I was told that I was too picky and overly sensitive. I now realize that those things are not necessarily negatives. Maybe more than anything else I want Scott to know that we believe in him so that he can believe in himself. He has already accomplished so much. He needs to know this and to know that life is about continuing to learn, grow, evolve.
On this trip we also saw how he was able to negotiate games with his cousins and even give in sometimes. That although the plane toilet flush startled him, he did not scream or panic. He had a typical reaction to something unexpected. That he could interact with unknown kids by saying hello without getting too close to them. Little things, I know, but still significant. Certainly some of this progress is just normal maturing. But compared to his sister who has never had any of these problems, even at the age of 3, you can tell something is slightly different with Scott.
My mother once said that all kids really need is your love and attention. How you interpret this is based on your own parenting style, values and beliefs. It is an individual relationship for each family, each child and each parent. Paying attention means that you know what is going on in your child's head and body. What matters to them. What makes sense to them. Loving them means that no matter what those things are that they think or feel that they are still the most special, unique person ever. That you will always support and believe in them just the way they are.
look! i found a way in.
first of all: YOU ARE!!
and secondly: thanks for this beautiful post, lori, for your words of identification and for all you shared about your thoughts, feelings, and about your son. i love reading about scott.
'to hold their hand when they need it and let go when they are capable.' yes, that's it. and yes, it IS a fine line.
keep walking it.
xx
Posted by: Kyra | May 23, 2007 at 07:42 AM