There are people in my life who have never accepted that my son is a special needs child. Four years. We're talking about four years.
Recently I had a conversation with these people, and I mentioned that Jack was getting extra help with math. Person Number 1 jumped right on this and didn't understand why Jack needed extra help in math. No big deal in my mind, as he clearly never really got a good hold on the basic grade 1 concepts. The basic opinion from Person Number 1 was that this is a pointless waste of time and resources because grade 2 math is just a review of grade 1 math anyway (it is not) and Jack doesn't need extra help.
Then I was asked if Jack has an I.E.P. All my Spectrum Homegirls and Homeboys know that this means "Individual Education Plan." In other words, a child with special needs can either have their curriculum modified to meet their needs, or accomodated. In Jack's case, he mostly has his school program accomodated: he gets a little extra time to complete tasks, he is given prompts to return his attention to the task at hand, and one of the smallest yet biggest things is that he has tasks reiterated. He's a smart kid, but I learned a long time ago that if you want him to do something or figure something out, it simply has to be worded in a different way.
This year is the first time Jack has had a modification to his school program, and that is because he has a great teacher who saw that he was really struggling with basic math concepts. Duh, I knew this. It took ages last year to get him to understand 2+1, 3+1, 4+1, etc. It was completely meaningless and abstract to him. And really, really boring and tedious. And probably highly irrelevant. So, he's been getting extra help with math to grasp some of the most basic concepts that he never got in grade 1, so that his grade 2 math won't be such a mystery. Well guess what, the kid understands what 2+2 equals now, among other things, and I was able to get him to understand that counting by 25's is just a pattern, so I think this is all great.
None of this is a big deal to me. He's a healthy, charismatic kid who is very intelligent, but his brain just finds a different path than mine.
However, when I told Person Number 1, that Jack does indeed have an I.E.P. in place. Person Number 1 was surprised and highly defensive.
"WHY does he have an IEP?"
"WHAT is his diagnosis?"
Me: "Autism Spectrum Disorder."
"Is THIS the SCHOOL'S diagnosis???"
Me: "No, a pediatrician's."
Person Number 2 seemed upset by this as well.
The basic gist of the conversation was that Person Number 1 had seen "real" kids with special needs, and Jack isn't one of THEM. The underlying message is that Jack just needs a little more focus and discipline.
Do you know how tired of ignorance and arrogance I am?
These are people who neither live with, nor see him every day. They see a boy who is mostly well behaved because he's out of the house. They do not see his frustration at nearly everything, how badly he behaves every weekend since he was 2 1/2, how if he's really wound up and doesn't get his way, he digs his chin into our arms, punches, hits or tries to bite us, not to mention the verbal abuse. They don't see that when he's watching his Wiggles dvd's, his sister is NEVER allowed to sing along or he will flip out. If she won't stop trying to sing along, he will actually cry.
They don't see the BATTLE we have to get him to do a small homework assignment once a week; the panic, the tears, the screaming, the wailing, the pleading, the name-calling, the rage. They don't see the little physical tics he gets when he's super nervous about something, like how he's flipped out lately about having to go for extra math help all the time, so yesterday he was flipping his head back slightly every few minutes. Every day he asks me; "why do I always have to leave the room to do Math?" and everyday I explain to him, but he will ask me again later, guaranteed.
This is the child who during the first few weeks of school last year, was so nervous about the practice fire drills they do at the beginning of every school year that he nearly threw up one morning as we were waiting for the school bell to ring. Or the time he threw up before the nursery school Halloween party, because it was different from the normal routine. Or him lying in bed with dark circles under his eyes fretting about something. Or me having conversations again and again that it's just not appropriate to copy what his friends say, and if he could only just learn to copy in his head nobody would get angry at him anymore. Or how in nursery school I had to teach him that he could hug his family, but not hug his school friends, because that was NOT DONE in the preschool kid world.
Or this is the baby who I could never ever put down when he was awake, and he was furious at me until he finally learned to crawl and then he was happy for a while because he was on the road to complete independence. The baby who SCREAMED when I breastfed him because maybe the milk wasn't letting down IMMEDIATELY, and he'd get himself in such a state that we had to put on this latin music cd I had and it would calm him down, and I'd be sitting there feeding him and shaking because he shattered my nerves. Long days of not knowing what to do with a baby/toddler who never learned how to play with toys and was bored with EVERYTHING except Baby Einstein, and thank god for that, because it meant I could put a dvd on and he'd watch it twice in a row so I'd get nearly an hour's break.
It goes on: the boy who never pointed at anything. Fixated on his schedule and LOST IT if the schedule changed. Was obsessed with the word Otoño (Spanish for "Autumn") and made us write pages and pages with this word in all different fonts and colours. Became obsessed with the 20th Century Fox Intro to movies and made us all draw the logo with spotlights over and over and over again until we had stacks and stacks and stacks of 20th Century Fox art. Never actually played with toys, but only made long lines with them, and if his baby sister crawled over and messed it up at all, it would be rage and devastation. Hyper-sensitivity to smells and sounds. Needs to go out in the hall while teachers pop a movie into the VCR or a dvd in, just in case the TV makes that static SPSHHHHHH sound that he has named 'the answer.' He's terrified of 'the answer'.
So, is he a lunatic? Absolutely not. Is he intelligent? Yes. Do I joke around with him all the time? Yes, he has an excellent sense of humour. Does he look like all the other kids. Yes, except I think he's handsomer ;) Does anyone know he has a problem at first glance? No, it usually takes a while to see that he is "different," and as he gets older and more reasonable, this becomes less and less apparent. Does he still have social problems fitting in easily with other kids? Absolutely. Luckily it doesn't seem to bother him at this point. Does he freak out all the time? No. We have lots of nice moments. Do I have to quell his anxieties and fears A LOT, and intervene often in his tyrannical ways? HELL YES.
So, I don't have a lot of patience, when people poo-poo the notion that Jack is a kid who needs extra help, or that whatever he has, it's not AUTISM, because he's not like those kids with AUTISM (ie; non-verbal, never making eye contact). And yet, don't we know that the Spectrum is a puzzle in itself because it is so BROAD and kids on it are so varied in degrees of developmental/cognitive severity? At any rate, this disrespects all that I have gone through. I have done a lot of reading. I have figured a lot of things out on my own, because we have been on nothing but waiting lists from the start. So I said f*ck it--I'll do it myself.
It doesn't just disrespect me, it disrespects JACK. The idea that all he needs is a bit more discipline, and that he needs to smarten up a little is insulting to him and a slap in the face to all that he feels, and his struggles to reconcile a world filled with frustration and anxiety; a world in which he simply can't understand why everyone doesn't just know what's in his brain. Suck it up Jack, and be a man about things.
I felt compelled to write this because I know there are others out there who run into brick walls when in their daily struggles to gain acceptance and understanding. A label is not the end of the world, or even the end of the road. It does not mean a child is damaged and less. It opens different doors if you let it. Yes, it is hard to accept that your child is not like "everyone else's child," but that is a fallacy in itself. Everyone has problems. If we wanted, we could probably apply a label to every one of us. Maybe I have some kind of post-traumatic stress disorder since my Mother died. How about you? Anxiety. OCD. Depression. Anger. What about all of us???
That frustration and anxiety I mentioned: who would want to live that way, given a choice. Isn't it our job to help a child who needs that strong hand to hold? In the end, people can say what they want. I just keep on keepin' on.