“She’ll Go Where We Decide”

So it’s mid-July, and in my state, school starts the day after Labor Day. About 6 weeks from now.

Rowenna had her IEP meeting in March, and the school district still doesn’t know which school she will attend or who her teacher will be. (We live in a rather large district, and there has been major re-shuffling due to closing one building and spreading the Early Childhood program across multiple schools.) Remember, the IEP process and special education are supposed to be a partnership with the family.

We are still deciding whether or not to bother with public school in the fall, and her placement plays a large role in that decision. This isn’t exactly winning us over to our local school district.

Last month, we had a home visit from three school therapists and one of the early childhood teachers – though not the teacher Rowenna would have in the fall. (Not sure how they know that, but yet still don’t know which teacher she will have.) During a joint session of OT and PT, both therapists were trying to get Rowenna’s attention at the same time. Rowenna reacted exactly as I thought she would – she paid attention to only the PT, probably because that therapist was closer, or possibly because she was doing something of greater interest. The OT lost her patience with Rowenna and started throwing things at Rowenna to get her attention. She was throwing stuffed animals, but still – in what universe is this the correct way to get a child’s attention? And if you’re willing to do that in her own home, in front of her mother, what are you willing to do in the privacy of the OT room at school?

The two therapists also spent a great deal of time making disparaging comments about Rowenna’s Birth to 3 therapists. There were many exasperated “yes, but what did they do with her?” type comments throughout the session, clearly dismayed at Rowenna’s abilities. They were also concerned (their word, not mine) that Rowenna no longer crawls. (Eh, ever tried to get a three year old who can run to go back to crawling?) And deeply concerned that Rowenna cannot balance on an exercise ball without her feet touching the ground while simultaneously drawing a picture on a board held above her head. No joke. Tell me: how many of you can do that? Now before you get on my case about this, believe me when I say that I know what they were trying to ascertain – core strength, balance, ability to reach, ability to draw, pencil grip, upper body strength. I get it. But here again is where I butt heads with therapy: if you want to know if she has any of those skills/abilities, how about evaluating her with activities that she would actually do as a three year old? How about evaluating for abilities that are actually skills you potentially use as a human being in the world? Sorry, I just can’t muster up the energy to consider Rowenna a failure and be “concerned” that she cannot balance on a ball with her feet off the ground while simultaneously drawing a picture above her head.

All in all, just more signs to me that this school district and I might not be on the same wavelength when it comes to educating my child. I’m now having horrible visions of her doing random, useless skills assessments, instead of doing awesome stuff for three year olds, all while being pelted with stuffed frogs. It left a bad taste in my mouth and admittedly I haven’t been as pro-active as usual in getting information about Rowenna’s placement for the fall.

I called the district office today to ask when we can expect that information. We were told we would find out in mid-August. Yup, mid-August. Just two weeks before I’m supposed to pack my daughter up and send her to a building full of strangers. Typical kids get school supply lists earlier than that, having known who their teacher would be for months.

I asked whether or not we could have some input into her placement, both physical location and the number of days she will attend. I was told that “she’ll go where we decide,” further complicated by the school district apparently needing to determine if she is considered a “young” three, “middle” three, or “older” three, and again I have no input in that determination.

So much for a partnership.

She seemed genuinely perplexed as to why I was even asking, and even more confused when I requested the two day program instead of the four day. Rowenna was recommended for four, why wouldn’t we choose four? I’ve mentioned before how there’s an order to things in Disability World, and when you question that order, or choose things out of sequence, you get questioned. We’d like her at our neighborhood school so people in the building can get to know her – the principal, the art, music, and PE teachers, the janitors, etc. We’d like her to stay in one school so there is a sense of continuity for her over the next few years, rather than bounce around between different buildings at the whim of the school district.

So between our less-than-stellar therapy experience and this complete lack of organization, I can’t say I’m feeling too excited about having Rowenna attend public school this fall. Apparently we have at least another month to think about it, though.

The good news in all this is we figured out a way to make another year of Montessori preschool happen for Rowenna. She will have the same teacher and be in the same class (mixed age group, 18 months through 3+ years). We already have our paperwork in order and the school has expressed excitement to have Rowenna join them for another school year. What a difference to have a school open its arms to your child rather than treat her like a toddler full of deficits and a source of more paperwork.

And until school starts, Rowenna will continue thrive, growing like a weed in this warm summer weather.

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3 Responses to “She’ll Go Where We Decide”

  1. Renee Anne August 1, 2013 at 10:24 am #

    Dear Lord, I can’t even begin to imagine how frustrating that can be! Also, I think you’re right about Ro. I would report the OT, first of all. That is in no way an acceptable procedure to gain the attention of any three year old. I don’t imagine that my almost-three year old would understand what was going on and he doesn’t have Downs (or any other documented disability – yet). Secondly, you can tell a district that you do not agree with their decision and until you are happy with it, you don’t have to adhere to it. I hate to say it, but the people that make these decisions (the teachers, PTs, OTs, STs, the principals, etc.) are used to having parents just comply without question because they (the teachers, etc.) are supposed to be the “experts” when it comes to educating these children (or any children). I know something we were constantly reiterating in my education classes (both for my elementary education and my special education coursework): the parents/guardians are the experts on their children; you (the teacher) are the expert on how to teach them. There’s a big difference between the two and it’s our job to listen to the parents and observe the child, then teach accordingly. If the parent says, “yes, my child can do that,” they probably can. No, we may not observe it in our limited time but, generally speaking, why would a parent lie to those that want to help their children?

    Just another reason I’ve become so disenfranchised with the public education system.

  2. Beth August 1, 2013 at 12:17 pm #

    Hi Mel,
    Let me start by saying that I’ve always thought you are a wonderful mother, and that you have great instincts. Stick with your gut!
    My first experience with special ed was when my daughter (your good friend) “flunked” her gym class in kindergarten. Yup, could not complete 21 of 25 tasks. I knew she was a “toe walker.” I thought this meant she was a budding balerina, I did not know it meant that her heel cords were very tight, and impeding her ability to skip, and do other such tasks. Fortunately, at that point, she was evaluated by a warm, wonderful, and practical woman who said “How about it we give some PT and adapted PE to help her get her heels down.” I was fine with this, but it made my daughter cry, because that meant 2 more days/week when she could not wear a dress to school! (Ah, the wonderful things that are important to a 5 year old!) Adapted PE was great – how cool is it to be able to roller skate through the halls of the school, or walk on a balance beam, while classmates are sitting at their desks. The physical therapist was more of an alarmist. “Look at all the things your daughter cannot do!” She had us racing to an orthopedic surgeon at Boston Children’s hospital. He was another calm, and rational adult, providing reassurance that PT would do the trick. Around this time, I also learned that if I wasn’t checking in with the therapists, they were often clueless as to our issues, our goals, or even what was in the IEP. Thus I learned that if a child does not have parents to advocate for her, not much gets accomplished.
    The bigger lessons I learned with my som who has multiple learning differences. I’ll try to summarize, rather than go on at length. I have found that special ed teachers and therapists may be fine at teaching (of course there will always be some that are better than others) but I think as a whole, they do a poor job of testing, evaluating, and deciding what services a child needs. They are also strongly influenced by their SPED directors, and school administrators who want to provide as few services as possible. If your health insurance will allow, have your child’s testing done at a pediatric hospital, with semi-annual check ups, and letters that follow each visit, explaining to the school, what they need to provide for your child. If your health insurance will not pay, in Massachusetts you can request a second opinion, if you don’t like the school’s test results.
    The IEP will be a piece of paper that hopefully will have some realisitic goals on it for your child. Being the best parent advocate you can be, and communicating perhaps briefly, yet regularly with the teachers and therapists your child has each year, will accomplish more than all the IEPs and meetings will ever bring about.
    Good luck!

  3. Lisa August 1, 2013 at 11:47 pm #

    Your experience sounds very familiar. This is so similar to what we have been dealing with. School starts for us on August 12 and Finn still doesn’t have a placement. Well, I take that back – the district offered us a self-contained mixed age class, take it or leave it. We declined, and have now had to hire an attorney to attempt to get Finn placed in a Least Restrictive Environment, as the law says he’s entitled to.

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