IEP Open Thread

~ Laura

When Ian was two, he suddenly stopped following the developmental charts in those baby books. Up until then, he was beating all the milestones by a couple of months. At two, he had only a handful of words instead of hundreds. We were in the middle of moving from NYC to the burbs. When all the dust settled, I contacted the state so that he could be evaluated.

They said that he had a speech delay and assigned him a speech therapist. A very bad speech therapist. She held up flashcards of things and shouted the words in his face. She strapped him in a high chair, so he couldn’t run away. “DOG”, she shouted. “DOG. SAY DOG.” We learned sign language and communicated that way for a while.

He was miserable, because he couldn’t communicate. He pretty much screamed all day long.

At three, the school district became responsible for him. They sent him to their neurologist who said that he didn’t have autism. (Our pediatrician said the same thing.) So, the district said that he would do fine in their special ed pre-school. The class was 2-1/2 hours long, and the teacher took a one hour break in the middle. He received no therapy for autism. Autistic kids at that age are often in full day programs with 30 hours a week of therapy.

I started a new job teaching four classes with three new preps. I couldn’t figure out how to get Ian from the morning program to a daycare center for the afternoon. And then the daycare centers and babysitters didn’t want him, because he couldn’t talk. He was kicked out of two places. We bribed the third place. We paid them almost triple the cost of the typical program to keep him there. Other days, I watched him in the afternoon and did my class prep until 4 am. The next day, I gave five hours of lectures with two hours of sleep. I lost ten pounds.

When someone at Ian’s school tried to take me aside to tell me that he had autism, they fired her.

When he was five, I finally took him to my own neurologist who looked at him reading the small print on the label of a water bottle and asked us if anyone had mentioned the word “autism.” She gave him a label of Aspergers and then the school district sent him to a proper program, where he began making real progress.

I suppose all parents have regrets. I have a lot. I regret that I trusted people. I regret that he didn’t get enough help until he was five, when his brain was the most plastic.

Yes, I have a lot of baggage. This afternoon, I have an IEP meeting where we’ll negotitate what kind of services the school district will provide next year. Understandably, I’m a little anxious.

I promised an IEP open thread. Here it is.

Published by Laura

13 thoughts on “IEP Open Thread”

  1. We didn’t get an autism diagnosis or appropriate services for our son until he was in third grade. My mantra: We can only go forward; we can’t go back. My son is 13 now, and flat-out, hands-down awesome. Still plenty of challenges, but who doesn’t have challenges, right?

    Now for my best IEP tip: a traveler size Starbucks coffee and enough cups for everyone in the room. Start as if you are all friends, and all pulling in the same direction. It’s hard to be adversarial with someone who brought you coffee. (Baked goods are nice, too. But I think the coffee is the true trump card.)

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  2. Laura said:

    “At two, he had only a handful of words instead of hundreds.”

    I used to obsessively record every word his big sister learned until about two, by which time I gave up, as she was eventually learning about three words a day and the whole list contained hundreds of words. Looking at the book where I recorded all those words, the word that comes to mind is “hyper-verbal.” She eventually got an Asperger’s diagnosis at 6.

    My middle child only had a handful of words at two and I recall a lot of frustration at that point, but I think he got on track by three. I had him evaluated at 6, and while he had some autistic features, he isn’t autistic and was actually rather insightful about his big sister at around age 4. He’s 9 now, and is VERY insightful about all of us, actually.

    Our 19-month-old is somewhere in the middle verbally. She has way more words than her big brother did at the same age, but way fewer words than her big sister did. The words come and go, according to whim, and she only seems to need about half a dozen at a time at most. Current favorites are “No!” (very versatile), heh (horse), ca (cat)–and that’s pretty much it. There is a lot of receptive and non-verbal communication going on, and i’d have to say she’s very social while not super verbal, the product of having been soaking in general adoration for her entire life.

    So, I think I’d encourage parents to distinguish carefully between verbal and social skill. They may seem superficially similar, but they’re not.

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    1. Oh, and “ba” for ball. Our Baby T believes that “ba” means “throw,” so if she’s throwing anything, she’ll say “ba!”

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  3. Our youngest didn’t start talking until about 2. I didn’t rush to get help, as his older brother didn’t start talking until about 18 months. Once the youngest started talking, he had a large vocabulary, and tended to use sentences. I wasn’t as worried as I would have been otherwise, as one of my cousins didn’t start talking until 4. My husband also started talking late, but in sentences.

    On the other hand, I do wish I had been more forceful in insisting on fine motor skills activities for our youngest. He lags behind peers still on fine motor skills, in part because our local school moved away from pencil and pen activities to computer-based activities. In hindsight, I should’ve pushed for a 504, which would have helped.

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  4. we had the state to an early intervention on my daughters because that is what you do with internationally adopted children. 4 hours of my life, with useless strangers in my house, that I can never get back. What a full on waste of time. My 7 month old little twin couldn’t even be straight, her spin was so bent her head basically rested on her shoulder, she was so low tone she couldn’t hold a toy or sit up. Thankfully our Ped and insurance covered PT/OT, otherwise I have no idea how C would be now. We did 2x a week of PT/OT for 4 years on and off. It was exhausting, expensive, although, the result was not needing an IEP was so worth it. We also had to change PT/OT often because C would grow out of their abilities. The thing she could do was talk, her heavy duty physical big twin sister spoke much much later.

    Another funny thing with twins, C was in PT but M didn’t need it. BUT M wasn’t walking. She could physically but she just wouldn’t. Once C took her first steps, at 15 months, M stood up and walked. The PT said she was waiting for her sister to catch up!

    C still has sensory issue that we can manage at home but I can’t imagine how difficult it would be when you know something is wrong and no one will help you.

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  5. I’ve decided that one of the halmarks of being a mother is regret, for everything we might have done that we couldn’t or didn’t do. I am grown up and have a pretty nice life, but my mom still has moments of regret that she didn’t find a way to give me the ballet lessons I asked for when I was little. That regret is just foolish (not likely that I would have been a ballerina in any stretch of the imagination and my interest was only based on pretty tutus and storybooks) — others might be more important. But, as ihavethings writes, we can only move forward.

    I will say that in the case of autism, a lot of what people understand and know has changed over the last 10+ years. Early diagnosis, and the move away from assuming that every kid will just talk when they are ready is one of them. Pediatricians recognizing the symptoms and referrals and listening to parents concerns on autism is another. I saw the change in the routine screens with my two kids (born 3 years apart) and also participated in some of the early diagnosis studies (my 10yo, in a big study on developing toddler-aged diagnostic tools). Some of the current early diagnostic tools, on orienting to one’s name, joint attention, pointing were developed and validated as part of that study, which began in 2005.

    I wish you the best of outcomes in your IEP meeting.

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    1. And, by mentioning the changing science, I don’t mean to say that there weren’t significant political and economic issues in diagnosis and treatment, but to say that the science also played a role.

      When the AIDS activists used to protest in the days of ACT Up, sometimes at buildings where I was working, and against people I knew, I used to get angry, at the activism, which seemed targeted at the people who I knew were working night and day to figure out what they could about the new and mysterious virus. But, I’ve since realized that the activism played a big role in the march to treatment (but so did the science).

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  6. We didn’t get an Asperger’s diagnosis until our child was in second grade. We lived in Eastern Europe and then Western Europe until he was 5, and so we probably explained away a lot of his language difficulties, constant screaming, inability to communicate to the fact that we had nannies who didn’t speak English, the fact that he had lived in three different countries by the time he was four, etc. I also worked when the kids were little and wonder what I might have noticed if I hadn’t been exhausted, working weird hours, living in a foreign country, etc. Later, I found myself obsessively rewatching old videos of him as a toddler, trying to see if there had been evidence staring me in the face that I had failed to notice.

    There was an article in a women’s magazine that came out when he was little where the woman described having this little boy who was obsessed with fans and household appliances and how proud she was when she dropped him off at preschool because in her mind he was so much smarter than the other kids — and that same day, the teachers called her to 1. throw the kid out of school and 2. inform her that he was probably autistic. I had a kid who was obsessed with vacuum cleaners and would scream when taken to visit our friends until he got to visit with their vacuum cleaners — and yet somehow I never put it together that the kid who liked fans and the kid who liked vacuum cleaners were the same thing!

    I actually thought our middle child was strange because compared to the other two she didn’t seem to have any interests as a child. I thought it was normal for kids to be obsessed with something — Our youngest had to have us read her a story about Mrs. Frizzle’s trip to the Water Treatment Facility every night before bed, while other kids wanted to hear about goodnight moon — and we didn’t think there was anything odd about that either.

    Good luck with the meeting. The idea of coffee or snacks sounds like a good one.

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  7. With a girl, the fact that she played with dolls probably counted against her as the observer described this as social play. Well, social if you overlooked the way in which her play didn’t involve any other person! We had PDD-NOS for over two years before I pushed for a real evaluation that finally gave us autism. Then it’s been a challenge, every year since, to get programs that both challenge and support her. I think this year’s turned out pretty well but our IPRC is the end of the month so we’ll see what they say then.

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  8. My daughter, who is now 29, was not diagnosed with Aspergers until she was 19. Despite this, she has a good life. She finished her PhD, completed a postdoc and then returned to school to enter a new field. She has an apartment, friends and hobbies. I don’t want to minimize early diagnosis and therapy and I’ll always wonder how her life would have changed had we gotten her help earlier, but I am happy to be mom to the woman she has become. More importantly, SHE is happy.

    I wish you the best of success at your IEP meeting, but don’t waste too much time in regrets. Just move forward and fight for your son.

    NUD

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  9. Thanks, all.

    The IEP went fine, because the biggest debate — should we keep Ian in mainstream environment or put him a private school — was already decided. We’re keeping in a mainstream classroom. Mostly because I couldn’t find another place for him. The only options were schools that were aimed at severely disabled autistic children or schools that handled kids with severe behavior problems Neither were right for Ian. So, he’s staying in a mainstream environment. It’s frightening though. I worry about him becoming a target for bullies. This story freaks me out…

    http://m.washingtonpost.com/local/autistic-md-boy-says-he-wants-to-resume-relationship-with-girls-accused-of-abusing-him/2014/04/20/21551f20-c266-11e3-bcec-b71ee10e9bc3_story.html

    http://www.edweek.org/ew/articles/2014/05/07/30autism_ep.h33.html

    But the die has been cast. I’ll handle problems as they come up in the fall. Fingers crossed.

    In the meantime, I’m totally done talking about disability issues for a while. Moving onto other topics.

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