Being the Defender
I sometimes feel that with Josh, I have to be there every minute of his waking day. Not because he needs someone watching him, I think sometimes that I have to be there to defend him in the off chance that “Someone” wonders “Whats wrong with him.” A lot of times when he “Freaks out” about something he appears to be that spoiled brat who didn’t get his way, and while I try to keep him out of those situations, they are, however, inevitable. They are going to happen sooner or later, and I always think I have to be there to help defend him in the off chance he doesn’t like something.
With school starting soon, I have been to various meetings. Trying to hear mostly what everyone has to say, trying to decide whats best for Josh, trying to understand whats being said, and really just hoping someone knows what they are talking about, because I don’t.
The plain and simple truth is he is getting older, and while he has made great progress, he is still a long way from where he could be. When people hear that he is almost seven they sort of gasp, shake their head or finger and give a list of things that he “Should be doing” now that hes seven. As if I don’t know. As if because I help him do certain things, he is being held back. I get it. I tell myself the same thing everyday, I put into practice just about everything that everyone tells me to do – but it doesn’t always work – because he just isn’t there yet.
Hes not stupid, and Im afraid that’s the one assumption that people make. Because he doesn’t talk – he obviously cant understand. Because he doesn’t look like hes listening – he obviously cant hear. And if he cant hear – then he wont understand that what we are saying is being said about him. Because he cant understand – we can say whatever we want, with him standing right there – because he simply wont care.
It makes me so mad, and I try to defend him. Even though I don’t know if I should be. Honestly I don’t know if I should or shouldn’t be doing ½ the things I do/don’t because depending on who you ask, either way is wrong. “He needs earlier bed time.” “He needs a later bed time.” “He needs a better schedule.” Why is he on such a rigid schedule.” I sometimes wonder if all those years of trying to please everyone, and failing to succeed was really just preparation for this kid – because I cant try to please everyone with him. I have to really fly by the seat of my pants, doing what I think is best at any given moment. Which is not easy for me.
Trying to get him into the right class for him this year has been difficult. I tend to shy away from giving my two cents when there is someone who knows more about it than I do. I take them at their word, and accept it as being the best…when really…it might not be. So far, so good. But the other day when I met with a teacher and a few other people who will be working with him this year, I got the feeling that they were trying to push their opinion over on me, and while it may work with “Most kids” Josh is not “Most kids.”
I debated for a while about saying anything. Wondering if it would just get shot down, but then I remembered that this is for Josh, that if I don’t say anything, they will be spending a better portion of the school year trying to figure him out – only to fail – which will mean Josh will fail and we will be on the big cycle of “Well why didn’t that work” for another year.
So I said something. I asked if they had gotten the notes from his teacher last year, if they had gotten the paper work from everyone else and when I was met with blank stares I really just wanted to pound my head on the desk. Im afraid its going to be a very long year. Yes. They had gotten the paper work. What did that have to do with ANTHING. I tried to explain about Josh, the best I could, to the best of my abilities…and was left standing there – as they waited for the punch line.
And I waited for them to acknowledge that I had even said anything about him.
After a few seconds of awkward silence the woman looked at me with a well known look. The fake look of sympathy. “We know about Josh.” She said in a hushed tone. Which didn’t help the awkward moment at all but instead made me wonder if I should be signing all rights over to her – because that’s the kind of woman she is. She thinks she knows everything, and makes every other opinion feel like it shouldn’t have even been hatched. “We know about him, and we will do everything we can to ensure he has the best year possible.” She continued to look, nodding her head in agreement with herself.
To say I was uncomfortable would be a complete understatement. To say I wish I could pull Josh out and send him to a completely different school would also be an understatement. I didn’t even want to ask what she knew about him, or what was going to ensure he had the best year possible. Im not asking for the best year, Im not asking for special treatment. Im asking that they give him some space and realize that hes a kid too. Im asking that they teach him what he is there to learn, and maybe in the process learn a thing or two from him.
Im afraid that sometimes in my haste to defend him, and pave a smooth road for him, that maybe Im just causing him more harm. Maybe if I hadn’t said anything she would have taken him at face value and treated him like any other kid. Of course she would have learned that he isn’t like any other kid – and most likely will spend the rest of the school year trying to understand him.
I wonder sometimes if in my trying to help him, I am actually holding him back.
And now I worry that this school year will be met with fits and tears from all involved. If only this were easier, then maybe I could start to understand.
I use to have a teacher that would follow me to whatever school I went to, and she made friends with my BF friends mother, so I was not allowed to hang out with my BF anymore. When I was in class, she would make me stick gum on my nose and stand up to the chalk board, and have me sit away from the class in the corner. I was not that bad of a kid; I think she just was like that. The school system is not what it is like now days; good and bad.
The good things is that there are schools that have (in AZ) and are required to help children out with special needs children, or children that need a different curriculum than he average student. I understand your situation, and my best advice is to ease yourself about some of the things that people say because we have no control over that. People will always stereotype. If they verbally express that abd say he is dumb is another issue, but who cares what people think. I have a teenage son and a toddler that have different issues. My toddler screams and cries, and he has bad days and good days. He has some type of Autism, one of my other children has other issues, but he is smart and some think he needs special classes. SO i understand where you are coming from. I find myself having to explain to people when my toddler has episodes of bad days, but I got tired of it because for one they do not need to know, it is none of their business. Two, it does not matter, there will always be that person or persons, that will have nothing good to say about anything, even themselves. Those are the people that have the problem becaus ethey think that there life is so perfect, but nine out of ten times; I bet they have something wrong with them that is not accepted to the context of social conformity.
Whatever you do as parent it will be wrong, except when it isn’t, but you generally won’t get acknowledged when you get it right because that’s what you’re supposed to do. All you can do, is do the best you can with the resources you have available, your kids will turn out however they turn out, at least you’ll have done all you could.
I used to have a primary teacher back in the 1950s who hit me, a lot, and I hated her. It wasn’t until I was an adult that I realised that she was driven by desperation, she actually cared and wanted me to learn, but she just didn’t know how to get through to me. Not sure why I’m telling you this, but it feels important.
Hi, I feel as if I could have written this article myself, you have put
out there all the doubts and fears that I also struggle with. I have a
9yo old son recently diagnosed with Aspergers, though we didn’t need the
diagnosis to know this was the case! And it was a diagnosis I had to
fight for, not for me but so that everyone else could have a better
understanding of his differences and how he functions in this world. Yes
some of the things he does are typical of a boy his age but not to the
extent that he can take them! When dealing with other people on his
behalf or dealing with him myself leads me to massive self doubt &
recriminations, I have to take a moment to remind myself that of all the
people in this world no-one knows him like I do, and ultimately no-one
has him at the center of their world like I do. I am the person best
placed to make sure he gets the life he is entitled to & it scares
me half to death sometimes, but I strongly believe that I am his mother
for a reason and I love him like no other possibly can. I think
sometimes the only thing you can really do is trust in yourself and your
instincts and be willing to change tack whenever something isn’t
working, keep trying and do your best not to take on board everything
that everyone else says just because they may be “experts”, when you
break it down you are the only true expert on your child and I believe
you have to keep fighting on their behalf even though others think they
know better than you.
I think you are doing the right thing in trying to help him, that’s what
he needs because he can’t do it himself, you have to be his advocate.
You just need to believe in yourself and try to have faith that you will work out
what’s best for your son, even with all the self doubt that is a parents curse!
Stay the course 🙂 all the best.
Bron
Hi, I’m new to xanga and Autisable and ran across your post. My heart goes out to you… finding the “right” classroom/teacher/school for kids on the spectrum is so difficult. Best of luck with this upcoming year.
I hated my teachers that tried to understand me because they didn’t get it. They didn’t even bother trying to teach me anything. I’m like brain damaged or something. She left me to the vultures. Once you’re part of the system, you’re stuck in it forever. These people are incompetent and should be in here as well. If you can’t do your times tables, then you are mentally retarded. She couldn’t spell “respect.” My grandma is not only stupid but has emotional problems and she’s my guardian because she wants my dollar. It never ends. I have to escape. I’m not sure how. I’m in good enough health now that I can, but how? They’ll look for me for awhile. I’m moving to Mexico.
“We know about Sarah,” they’ll claim and they’ll say what’s happening to me is a normal progression of the disease when I ahve a developmental disorder and a TBI. I want off these drugs.