Tuesday, March 30, 2010

A retarded kid and a raging bitch walk into a bar.....

Around the end of October this year my eight-year old son was diagnosed with Aspergers, which is a ‘high functioning’ form of Autism. He is on the ‘high functioning’ end of the autism ‘spectrum’.

Every time someone says that to me it feels like they are comparing my son to the newest technological equipment used for pap smears.

This diagnosis wasn’t totally out of the blue; there have been signs something wasn’t quite right since my son was a baby. He didn’t really communicate at all until he was two (he wasn’t even gesturing), and he didn’t use speech as his regular form of communication until he was three.

And then there was the tantrums. Holy good Christ, the tantrums. Four to six full-on, screaming screaming freaking out with the screaming tantrums per day. For any random thing.

He was kicked out of three daycares by the time he was three and a half years old.

For the most part, all of his behaviour problems were contributed to the fact that I was just a shitty mother. My son looked perfectly normal, therefore if I didn’t suck so tremendously at parenting him, he would just know better.

That was the position of my extended family, the daycare(s), the doctor, and even some of my friends. I was subjected to endless parenting tips because clearly, based on the behavior of my devil child, they were desperately needed.

But, deep down….I knew better.

My boy was not experiencing the world in the same way the rest of us were. He wasn’t just a spoiled little shit disturber, he was kind of ….stuck. What he saw, felt, heard and tasted was just different than the rest of us, and although we couldn’t see ‘it’, ‘it’ was often unpleasant for him.

I started calling for help, and found a fantastic organization called the ‘Early Childhood Intervention Program’. They are small and have no money (as evidenced by the fact they don’t even have a website I can link you to), but they are wonderful people who COME TO YOUR HOUSE and help teach you ways to play with your child that will stimulate learning and help remove communication barriers. And not once did any of my interventionists give me the, “wow, what a little bastard you have there” look.

I also was lucky enough to finally find a daycare that was up for the challenge my son brought them. They never considered the idea of cutting him lose because he was just too much of a pain in their ass to deal with. If they came up against a problem, they tried to fix it. Sometimes it would work, and sometimes it wouldn’t. But they didn’t give up on him and consequently, he had a place to go everyday where he felt safe and happy and was surrounded by people who didn’t just tolerate him, they loved him.

I look back at that time now as the two years of cease fire. We coexisted in this world without having to do battle.

Oh, how I wish I knew then what I know now. I would have enjoyed that peace a lot more that I did.

My boy had to leave that wonderful daycare to start school. I knew it wasn’t going to go well, so I tried to meet with the kindergarten teacher prior to school starting to debrief her on the ways and means of Jake. I wanted to give her a little history, and possibly pass on some ‘lessons learned’ from the daycare regarding how Jake needs to handle group situations.

The kindergarten teacher poo-pooed me and chalked me up to a nervous mom who was apprehensive about her son starting school.

Her - Oh, Mrs. FoN, I’ve been doing this for many years now, and they eventually adjust.

Me – Um, maybe….but…Jake has some communication and sensory issues since birth, and….

Her – You don’t have to worry about it now! He’ll be in great hands.

Me – I don’t doubt you are the most kick-ass kindergarten teacher since the chick from Romper Room, but there are a few behaviours you should be prepared for. The daycare….

Her – Really, we will do just fine. Have a good day!!

*hustles me out of the room*

Predictably, that same teacher called me four days into the school year. It wasn’t going that well. No shit? Hmmm.

Who would have thunk it, huh?

It was that phone call that started the fight I have had to wage and will continue to wage for the foreseeable future.

I knew Jake was on the autism spectrum, but I was really scared to be given that news.


From someone with more credentials than Dr. Google.

But, I was repeatedly told from many sources that once a diagnosis was made all kinds of wonderful doors would open and a flood of services would be available at my finger tips and we would all live happily ever after. Just like all those autistic kids on television who are charming and oh so smart and who have families who learn a wonderful lesson about love by having their lives enriched by the unexpected gift they were given of their autistic child.

So I did it. I finally pushed for a diagnosis and I got one. Aspergers.

My biggest fear of all was that once my son was given that ‘autism’ label he would immediately turn from the rotten little kid who just has a shitty mother who never taught him manners, to the retarded kid who doesn’t need to learn to read anyway so let’s just teach him how to mop up the place. You know, a skill he really needs.

Unfortunately, I was right.

Since that faithful day in November we received the official news of Aspergers, I have been battling my son’s school in an effort to get them to focus on ANYTHING other than just his behavior. He is in grade three, and suddenly the focus is not learning cursive writing or times tables, but how to put up his hand before asking a question instead of just blurting something out. A useful skill, sure, but so is READING.

I would do anything to go back to people just assuming I’m a bad parent who indulges or ignores her son and that’s why he sometimes acts like a little asshole. I would have happily taken that bullet for the rest of my life if it meant others would be required to hold my son to the same standard they hold the ‘normal’ kids.

Now I fight. Every single day. To insist my son learns the same thing the other kids are learning. LEARNING is not his problem. Learning while surrounded by 25 screaming children, colourful posters, bells ringing, music playing, that sickly glue/vomit/lunchmeat smell schools have, and the teacher yelling over all of it….that’s his problem.

So he tries to deal. He tries to deal by putting his hoodie on and wearing his hood over his head.

Not allowed in school – it’s considered disrespectful.

So he crawls under the desk to escape.

Not allowed in school - what if ALL the kids wanted to crawl under the desk?

So he puts his arms around his ears and starts banging his head on the table.

Retarded kids do that kind of thing. What are you going to do, huh?

Why don’t we back it up a few steps and just let him wear the fucking hood? There is a big difference between wearing a hood in class as a way of coping and telling Mr. Vernon to Eat. My. Shorts.

And after you let him put on the fucking hood, teach him to read, would ya?

So, here we are. No longer little bastard with the shitty mother, but the concerned mother and the poor little retarded boy who lights up the world with his smile and has a wonderful future ahead of him greeting people at WalMart.

Fuck that.

So, the fight wages on. Now we have some new goals. Jake is going to get an education, and I am going to make that happen. And hopefully stay out of prison in the process.

If I go a super long time between posts you’ll know why.

No Lifetime movie moment ending here. Sorry about that.


Jenni said...

Wow, that is a whole lot going on!

So, here's my question: aren't there any supports offered by your public school for kids w/Autism? Like a classroom aid that can really help Jake to focus and learn? I mean, he can't be the first autistic kid to ever attend that particular school.

And, good for you for getting in their face and demanding he get his education. advocating for a child with special needs is not a job for sissy parents. I'm sure you are serving Jake well.

Miss Angie said...

*hugs* That is really terrible, and I'm sorry you have to go through that. I hope the best, and will send good energies that way!

Jennifer said...

I don't know what to say. I'm sorry seems lame and kind of stupid. I just wish I could help. If I lived closer I would help you kick the school's ass, but being thousands of miles away really doesn't do anything for you. I'm sorry. See. Lame and stupid.

Anonymous said...

Wow... it's really good to hear REAL stories like this. But I'm sorry you have to deal with this stuff. People can be real jerks sometimes. I hope things turn around soon... *hugs*

Blogging Mama Andrea said...

Okay I'm gonna go back and read the whole thing in a sec but first -

My son (8 then 7) was diagnosed in November last year. You can handle it better than you think. I'll pull up some great books that have made a difference for us and an fantastic kit put out by Autism Speaks (www.autismspeaks.org) If you want them anyway.

We just got our IEP set up for our new school (since we moved in March). More schools need to realize how common this is. the numbers are large. Thankfully our school has an Aspergers specialist right there. But the last school did not. Fight for your kid. Find support in groups, other parents anyway you can.

Okay you probably already know and said all this so I'll go read it now. :)

Blogging Mama Andrea said...

Do you have an Autism research center in Canada near you? I know there are advocates that can help in the US with schools. Do they have IEP's in Canada?
(Individualized Ediucation Plans - not sure they may be called something different? Here they also go by 504. Both my kids have them, one for aspergers and one for a development/speech delay).

I hope you are able to get someone to listen to you and help you. Aspergers means being different, yes. But my aspergers kid lights up my life with his humor and smile, screaming and all.

Captain Dumbass said...

A little prison time might not be bad. Lots of publicity, force the gov't and school board into making some changes. Maybe a book/movie deal for you.

Aunt Juicebox said...

I'm glad to see you blogging about it. I'd certainly like to hear more. Is homeschooling an option you could consider? I feel so bad for the little guy - I will never understand why school has to be like that. Let him wear his freaking hood already.

Danielle said...

This school outrages me... not quite sure what the education standard is where you are but where I am this is handled much differently. I work in a school for example and there is a student here who is mid way on the spectrum. He does not just scream or cry out or bang his head he causes physical harm. Everyone here understands (and yes this is a public school) that he cannot help what he is doing. He now has a caring aide that goes everywhere with him to give him that sense of security. If he wants to wear his hood up he can, if he needs to go for a walk he can, they even gave him communication cards.

On that subject have you ever tried something on this order? They are a set of 5-10 cards (depending on the child) with different emotions or needs. The child simply chooses the current emotion or need (ex. frustrated: needs a walk)hands it to the teacher then goes for a little walk to a predesignated place. Might not work for every student but worked well the two times I have been exposed.

Overall best of luck. Possibly there is a better public school in your area that will recognize your child as a student first, and then recognize that he does have special needs. There is no reason he should not be given an equal education.

Keely said...

All I got is hugs.

Margaret said...

Wow if wearing his hoodie with his hood up helps him learned then let him. I am with you on this. I would start raising hell with the school and the district and if that doesn't work then get the media involved. Things always seem to get done with the media gets involved!

You are in my thoughts

Shawna said...

Hugs to you and good luck with all of this. Fighting the school district is never easy, but your son will know what you did.

Someone before mentioned IEPs which we have in the states. That is supposed to stand for Individualized Education Plans. Makes me laugh. I read several a week and I can almost tell you the diagnosis of the child by what the teacher wrote in the IEP. They are writing these for the disorder or disability instead of for the child.

I feel for you... because this frustrates me to no end. That's my "hot button" issue and I want to change "disability world" but I don't even know where to start.

By the way, if you want to read some great blogs by families and individuals dealing with Autism and Aspergers, try The Autism Hub. I don't have the link saved her, but I usually just google that. The people who write those blogs are all about treating individuals like... well... individuals. Good luck!

Lynear Thinking said...

I despise school. I always thought it was a bad place for kids - and that's all kids. I had one who could do anything possible, and one who could not no matter how hard she tried. They tried to label her and a I resisted to this day. She's an adult now but still learning and struggling sometimes. Does the diagnosis matter? In a perfect world of "Father knows best" and "Leave it to Beaver", but not in our world. I did the "OJ trials with my kid too - and yes I was a bad mother. I don't believe in the system. I can't offer you any advice, and I think you've had enough of that. All I can say is F ...k'm. He's your kid and he's got a good mom standing up for him. School is a struggle, and its useless. I found everything they needed to know I taught them at home because they didn't learn it there. Peace out.

Sprite's Keeper said...

My nephew was diagnosed with ADHD, aggression issues, metal in his system, and has been on a merry go round with changing meds as my sister fights an uphill battle with doctors, schools, and daycares who call her when he SNEEZES the wrong way to come pick up her son. She faces them all every time, trying to get her son the care he needs, the education he needs, trying to stay ahead of the game since he is a perfect candidate for falling through the cracks. I have a very deep admiration for my sister, want very much to see my nephew not have to struggle with everything, and want those teachers, aides, and doctors who just didn't feel like giving any effort to help him to eat some very bitter crow.
You are definitely not alone in this.
Keep fighting. He's worth it. (I know you know that, but sometimes you need to hear someone else say it too since you never quite hear it enough.)

Casey said...

Hell fucking yeah, FoN, you are a fighter and I am here to back you up if you need it. I'm sorry to hear that you're struggling with your son and could have gotten so much more help thus far if people would just BELIEVE you. Goddamnfuckfacelickers.

Although it's not the same, I've hit similar walls with our food dye/gluten free issues. People think I'm just the nutty granola mom who put her kids on a special diet.

felt that sister! said...

You made me laugh out loud, which I soo needed today. I have two wonderful fantastic autistic sons almost 6 and 4 and I FEEL you. Be prepared for more bullshit and more but keep on smiling and kicking ass. Today we had a meeting at the school with the young enthusiastic educational psychologist who had last week administered a standard I.Q. test on my 'high functioning autistic' son (doncha just lurve labels) and confidently presented us with evidence that he is intellectually disabled (the nice word for mentally retarded). As he is the best reader in his kindergarten class by far, actually my son taught himself to read at 3 years old and can identify not only all the planets in each direction from the sun in and out but which one is which when it is by itself (I personally can't tell Venus from Uranus but hey) does that sound like someone with an I.Q of 69? Please.... when my hubby and I tried to explain that administering a test designed for a neuro typical without adapting it to genuinely assess our son's intelligence might not produce a valid response she seemed to indicate that to measure I.Q effectively the test has to be administered a set way. I mean really is it too much to ask for a little flexibility from the systems to allow our children their rights to a genuine education? Also FEELING the comments about shitty parent looks assumptions and comments from people - even though I have also have an 18,16 and 10 year old set of girls with lovely manners and great grades you would not believe the number of so called professionals who provide me with useless and patronising parenting advice as though I have never thought to engagingly talk or read or play with my kids!! We have a WONDERFUL paediatrician however and it is always important to have someone in your corner. At the school the assistant principal is also wonderful and in love with our son so that helps when we are battling them as an institution to understand, adapt, think outside the boxes they need to tick and focus on what are the outcome we are trying to achieve with this wonderful young man who happens to have autism (and so needs us to ensure we are not discriminating against him in the way we provide his education - or bloody test him). I mean would you teach a blind child by keep saying "Look at the picture, what can you see?" Schools really need to think about how to genuinely provide engaging and effective and inclusive teaching for not just our kids but for all the children's and the entire community's benefit. I keep in my head that we are all on a journey with our children and ours is set for adventures and try to celebrate that no two days are ever the same!