An Open Letter to CUSD Special Education | Three Before Thirty

Dear Capistrano Unified School District,

I'm hating you right now for a lot of reasons. Mainly because some Psychologist wrote in my son's IEP report that my son's Autism is "atypical" and that she is more concerned he has a "mood disorder."

Really now? A mood disorder? Let me go over things with you, from the start, about what exactly is going on with my son. I'll break it down bit by bit so it is easier for you to process and reference. Mind you, this goes against the grain for me since I minored in English.

1) My son has High Functioning Autism. Ever hear of it? It's also called Asperger Syndrome. It's characterized by being less typical from traditional, low functioning Autism but shares many of the same characteristics. Want to know what my son's characteristics are? I'll be happy to share them with you!
A) Echolallia - he will repeat everything said to him, and often repeats questions back to us when we ask him something.
B) Repetitive Behavior
C) Impared Communication - he 95% of the time cannot express what he wants or needs, although he is able to speak.
D) Impared Social Interaction - does not like to make eye contact consistently, prefers to play alone, is very independent, is in his own world, tunes us out.
E) Tantrums, or rather Meltdowns as I like to call them. They happen daily, and can last anywhere from 10 minutes to 75 minutes.
F) Uncooperative and Oppositional with the most basic tasks
G) Gets stuck on things over and over again
H) Toe Walks
I) Has unusual attachments to items
J) Lines things up
K) Is hypersensitive to certain textures and sounds
L) Inability to deal with transitions
M) Inability to handle changes to his normal routine
O) Food Selectivity - and ever since he came back from vacation 2 weeks ago he only wants to eat Quesadillas and Yogurt, but I guess that's my issue to deal with anyways.
P) Fine Motor deficiencies - after 6 months of Occupational Therapy the kid can finally eat a yogurt by himself, but it aint pretty.
Q) Gross Motor deficiencies - after 6 months of Occupational Therapy he can finally use pedals on a bike. AFTER 6 MONTHS of OT that I paid for myself out of pocket.

2) My son was dropped like a rock from Regional Center services on his third Birthday because of the fact that he can talk. While he does have a high vocabulary, his pragmatic language has a severe deficit. Just because he can repeat a line from a movie doesn't mean he is utilizing proper social language. Please see Section 1, A regarding Echolalia.

3) Because of the lack of behavioral support since he was dropped from Regional Center, and CUSD failed to provide the services that were initially promised to us prior to the official IEP meeting Trevor is back to multiple meltdowns per day. Multiple. Not just one, we're talking like 3 or 4. Do you know what it's like to have bruises all up and down your legs from your child kicking the crap out of you constantly while wearing shoes? What it's like to throw out your back because your son is melting down and running in to traffic so you have to do something drastic to catch him? This isn't normal. Although I have a Psychology background, I am not an ABA therapist. I've received Parent Training from our former Regional Center provider, and I am doing what they said but it isn't enough for my child.

4) Going back to number three but in more detail, this little guy engages in self injurious behavior. When he's melting down, he purposefully bangs his head on the wall... the floor... anything he can. He puts himself in harmful situations when he's "seeing red," hence the running in to traffic. In fact, he has a huge problem with eloping when confronted with denied access situations that cause him to meltdown. Is it unreasonable that I ask him NOT to open the oven when it is on? No. Is a response from me of, "Please don't do that" unreasonable for him to just deal with? No. Is it reasonable for him to start screaming in response and do everything he can to get out of the house as a result of me not wanting him to open the oven? Fuck no. (FYI, I only use bad words when I'm *extremely* pissed... which is now)

5) Is it normal for a child to play with one car for 3 hours straight at the age of three? Uhhhh, no... it's not! Because believe me, if I let him he would. He would probably be happy if I let him all day, but it's not in my nature to perpetuate his stereotypies.

6) When I go out anywhere in public with my child I have to carry business cards with me that explain that my son has Autism. Why? Because he's that bad when we go to places like the Grocery Store, the Mall, the Park... it's frustrating! People actually accuse me of being a bad parent, or not having any control of him so I have to have a BUSINESS CARD to hand to them that explains he has Autism.

7) If I had High Functioning Autism and a Sensory Processing Disorder and I was living in a world that was NOT designed for me, I would probably be pretty sad at times too. Does it mean that my son has a mood disorder? No, it doesn't. It just means that he isn't happy when he's overstimulated, and he isn't happy when the average NT can't relate to him. Since I have other children and we have this thing called a life filled with lots of responsibilities, this requires me to take my son places that are not necessarily compatible with his Autism. If it doesn't cause him to melt down, then he cries a lot of the time. Cries. At the age of three. And then when I take him home, he's happy again. But I can't stay home all day, and I think we would all go crazy if we did so.

I have now requested a new IEP meeting TWICE, in writing, in the last 14 days. Have I received a response? Yes, minimally. But I'm basically getting the runaround. Is my son responding appropriately to the in-class group ABA he is receiving? Yes, of course he is. The kids LOVES ABA! I would expect him to respond appropriately. Is he responding appropriately outside of his 1 hour and 50 minute classroom environment? No, he's not. And by the way, just ask the Bus Driver about this morning's incident. I'm sure he'll give you an earful about what happened.

My son is literally crying out for help on a daily basis. Help that I can't give to him because my insurance company won't give me the time of day, and the Regional Center won't take another look at him. What is it going to take for you to approve a longer school day for him? What will it take to get him in an Intensive Behavioral Intervention program? Does he have to get hit by a car? Does he have to knock one of my teeth out? Break his little sister's leg?

What's it going to take?

His life is at stake here, and so is my marriage and the happiness of our little family. But more importantly HIS LIFE IS AT STAKE. Does he have to end up in the PICU at CHOC with injuries sustained from being hit by a Minivan to get services from you? At this point, I'm willing to take the hit in the next 5 minutes if it means you'll give my son the services that he needs. It's become that bad.

So, call me... we'll get together, have some coffee, talk... settle this once and for all. And once I get what I want, I'll stop contacting you on a daily basis - I swear.

But until then, my name is Jennifer and I will not give up until my son gets what he deserves.

Sincerely,

The Mother of the most AMAZING Autistic Child

Source: http://3before30.com/open-letter-to-CUSD

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