Mainstreaming the Cherub

This is a continuation of a previous post. You can find that post here. In that post I explained how, during the course of a cross-country move, I tried to see what special services might be available for our handicapped child in our new town. I didn’t have much success, so I set it aside while I packed, took care of broken plumbing and a collapsed ceiling, and sold our home while my military husband was away at his technical school. Then I set it aside while we welcomed him back, packed our things in a truck, drove across country, looked for a new home, unpacked, settled in, discovered I was pregnant, and developed complications requiring me not to be on my feet for more than 20 minutes at a time. The Cherub always has trouble adjusting to our military transfers, and I wondered if what we were doing with her was really still the best thing for her.

I called the public school. I said that our child was non-verbal, we’d been looking for somebody who could help her develop ACD skills (Augmentative Communication Device, see previous post), and that she was also mentally retarded. I explained that I was feeling like what we were doing wasn’t working as well as it used to, and that I wanted to visit the classroom she would be in if we enrolled her and see if she might benefit from going to public school part-time.

The lady in charge of the special ed. department made an appointment for me to meet with her and visit the classroom, and cheerfully assured me that they could easily meet the Cherub’s needs in this classroom. I am reasonably sure that she was the same person I spoke to before we moved to town, because surely there couldn’t be two such administrators! She confidently asserted that they could provide things I couldn’t at home. At this a little warning bell went off. Since I hadn’t told her what we did at home or my own background (I have some special education studies and experience under my belt), I wondered how she knew this. She went on to assure me that I was certainly doing the right thing, and suggested that I should probably enroll all my children in the local schools. I declined.

The day of our appointment came, so the Cherub and I went to visit the classroom. The administrator we were supposed to meet never did show up. She did not call to explain where she was at any time (we stayed in the classroom for several hours). Although I had made the appointment many weeks in advance, she did not bother to notify the teacher (whom we shall call Ms. R.) until that morning- giving her about one hour’s notice of my visit. Worse, she did not explain to Ms. R what I was there for. She just faxed her a notice that a Ms. X (that’s me) would be visiting her classroom at 9:00 a.m. that day. So Ms. R did not know if she was being investigated, evaluated, observed, challenged…. It was probably about thirty minutes before she relaxed enough to tell me that she had no idea why I was there.

I really liked Ms. R and all the aides and therapists I met that day (with one small exception). However, as a suitable environment for the Cherub, the classroom was horrible. One little girl sat hunched in a wheelchair watching Dumbo on the television in a corner the entire time we were there. One boy lay on some mats, propped up by pillows the whole time. One boy sat in his wheelchair staring out the window, another swung in a basket seat, and another crawled aimlessly on the floor.

Cherub had to use the bathroom. I took her into the class bathroom and wanted to be sick. There was urine on all the toilet seats. Two special needs classes shared the bathroom. The bathrooms had no stalls, only curtains that were too long and heavy for the Cherub to manage on her own. Children from the next classroom also used the same bathroom, unattended. Some of these children are emotionally disturbed (and thus, a possible safety threat to my daughter). They are higher functioning than my daughter and the children in the classroom I was visiting, so there are 17 year old children in that classroom who function at about a ten year old level- using a bathroom with my child, who functions about at a 2 y.o. level. When I took her to the bathroom, the teachers all got very excited and said, “She could go to the bathroom by herself! None of our other students can do that. It would be wonderful to work with a child who could handle her own toileting!”

Some of the children get physical and speech therapy for a few minutes a day.
They don’t actually have a physical therapist. The occupational therapist did double duty and performed the physical therapy.

Then came the kicker. Nobody in the classroom- in fact in the whole school-
knew sign language. My daughter can hear, but she cannot speak and communicates only through sign language, as I made thoroughly clear to the administrator when I made the appointment.

I was the only one who thought this was a problem. Everybody there assured me
that the Cherub would do well in the classroom, and they would all make an effort to
learn sign language.

After we’d been there a few hours, the office delivered a message that the administrator I was there to meet would not be coming, so we should not wait for her. I went home and called B., the lady who never showed up. She simply had been in a meeting that went over, she said. There were no apologies, just the bare announcement of fact. She asked me when I would be enrolling the Cherub. She said again that she was certain I would be much happier since they could meet her needs in ways that I wasn’t meeting them at home (and, again, we had not ever discussed what we did at home, and she had not seen our IEP. So she did not know anything about how Cherub’s needs were met at home).

I said, “Well, there’s a problem. We’re only interested in having our Cherub in school if the school can provide something I can’t. Nobody there can sign, so clearly, the school cannot meet even her basic needs and I can. She won’t be going to school. However, I’d be interested in meeting with the speech and physical therapists to see if they can provide any services superior to what we have to offer at home.”

She told me that that was very wise of me, and at the minimum we should consider doing therapy through the school, since they could provide things we couldn’t. Something about this woman’s tone and attitude finally just irked me. I turned off the painfully polite mode and went to painfully honest. I told her I didn’t see how she could possibly know that the school could ‘meet the Cherub’s needs in ways I couldn’t since she had never laid eyes on my daughter, knew nothing about what we did at home, knew nothing about me or our routine, and had already tried to steer me into a class where nobody could understand the Cherub’s most basic requests and that I thought making baseless assumptions in this manner indicated she had a clear bias and an inability to objectively evaluate the Cherub’s needs and the school’s ability to meet them. There was silence for a moment while that registered. She asked me about the sign language issue and seemed surprised that nobody knew sign language. I assured that this is what I had been told by every teacher, aide, and therapist in the classroom. She gave me the number of somebody else to call, and basically washed her hands of me at that point.

I want to stress that I really was very impressed with the teacher. B., the head of the special ed department was a clueless idiot, but the teacher was a different story. She was a lovely woman, very kind, very devoted to her work, very enthusiastic, and very, very honest. Our child would have been the highest functioning child in the room. The other kids were not mobile, were not toilet trained, did not have any communication skills at all, and mostly lay on mattresses or sat in their wheelchairs and stared into space. Our child tests as profoundly retarded, and she can’t do many, many, many things. But she walks, she babbles funny noises, she hums her own little tunes, and she loves back. She hugs, she smiles, she gets excited (she also cries, gets mad, has temper tantrums, and scratches and pinches when irritated). We have been told that what her test results say is that she cannot do anything we have taught her how to do.

The teacher was working with her on coloring something (our child loves to scribble), and said something to her about how nice her picture looked. Our daughter hugged her and the teacher got tears in her eyes. She begged me to send our child to her classroom, and I was touched by her plea.
“I can tell,” she said, “that we can’t do anything more than you are already doing with her- but she would be such a joy to work with. It would be so
rewarding to us.”

But, you see, as much as I liked that woman on a personal basis, I wasn’t interested in sending my child to school just to ensure that the adults in the room had somebody more rewarding to work with. I sympathize with how she felt. It would be very, very difficult to spend all day, every day, working your heart out for and with children who can never smile back at you or give you a hug. My hat is off to that dear woman for what she does- but that doesn’t mean I wanted to send my child somewhere that wasn’t the best place for her just to make the grown-ups there feel better.

The teacher went over the weekly work with me. One of the things they did for two or three hours once a week was ‘cooking class.’ I looked around at the kids in the room- most of them entirely immobile- and asked what that involved. Once a week for two or three hours they worked together on making a batch of instant pudding. It took that long because an aide would help child #1 open the pudding box, then an aide would help child #2 tear open the bag, then an aide would help child #3 pass a bowl to child #4, who would be helped to pour in the pudding mix, and so on around the circle until the task was completed. Everybody got a chance to stir the pudding once, but this took a long time, since nobody could stir the pudding without an adult holding her hand and stirring it for her.

My child helps open packages, pour, stir, and so forth almost every day. It
doesn’t take us two hours to get through a box of pudding, either.

They had choir once a week or so, too, and this was their mainstream class. What happened is that the ‘normal’ kids in a music class would come in and sing for the kids. They were quite excited about these mainstreaming efforts.

Well, we have six more or less normal kids, if there is such a thing, and we sing together on a daily basis. Even if we didn’t, we go to a church where the entire
congregation sings together (this is our child’s favorite part of church, in fact, her sign for church is her sign for songbook)- so that it didn’t really seem necessary for our child to be in public school for ‘mainstreaming.’

We do want what is best for the Cherub at all times, and if I believed it were public school, she’d be there. Our Cherub benefits best from an environment as near a regular setting as possible, Government institutions are hardly “as near a regular setting as possible.” That would be her home.

Next week I’ll post about what happened when we called the number B. supplied us to pursue receiving therapy through the school.

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  1. Posted July 12, 2005 at 8:26 am | Permalink

    I really appreciate you sharing this story with us. I’m not sure when exactly it was in my journey to becoming a fanatical homeschooler that I realized that home was generally the best place for a child with special needs, but I caught myself saying and thinking things like that awhile back and it was really out of character for the man I was before I met Sarah in 2002. :) There’s just nothing that can compare with the one-on-one attention that can be provided by loving parents.

    Well, we have six more or less normal kids, if there is such a thing, and we sing together on a daily basis. Even if we didn’t, we go to a church where the entire
    congregation sings together (this is our child’s favorite part of church, in fact, her sign for church is her sign for songbook)

    That brought a delightful smile to my face! I am glad we sing with Joseph every day, and have since before he was born. He already likes singing at church, and gets a little bit upset when it’s over for the quiet parts. :) Our little “Re” will be a singer, Lord willing.

  2. Posted July 12, 2005 at 11:51 am | Permalink

    Having met the Cherub personally, I can certainly understand why the teacher wanted to have her in the classroom. In spite of her difficulties, the Cherub is on of the most stimulating people I have been around. Interacting with her is a joy. I can’t say that for everyone I know, unfortunately. Her emotions are honest and I really respect that in a human being. I have a hard enough time reading people as it is.

  3. Posted July 12, 2005 at 12:03 pm | Permalink

    …said again that she was certain I would be much happier since they could meet her needs in ways that I wasn’t meeting them at home.

    What chutzpah. Thanks for sharing all this, by the way. On the flipside, we have some friends who had to battle to get their son into the state pre-K program, which, though it’s offered at the local schools, is funded differently, used different personnel, etc. So no allowances were made for specialized IEPs, no extra staff could be made available, etc. They prevailed in the end, but it was a painful process. The arguments against allowing him in were a complete crock, and we all knew it.

  4. Posted July 12, 2005 at 2:01 pm | Permalink

    jquinby, you know, that’s the funny thing. I could have easily put the Cherub in school. But I would have had to fight to get her a certified physical therapist instead of an OT doing double duty, I would have had to push to get her a speech therapist who was actually capable of doing what the Cherub needed, and it would have been a headache to get the right amount of therapy. The Cherub was in school before we adopted her, and her therapies each accounted for 3 percent of a 3 hour day. It takes her that long just to process and adjust to a change in activities. It’s a fight either way, I think.
    And bookworm, if you only knew! I am not blessed with patience even a tiny bit. I would say my biggest personal asset is just an abundance of sheer pigheadedness.=)
    If it required an abundance of patience or organization to homeschool, I couldn’t do it.=)

  5. Posted July 12, 2005 at 3:20 pm | Permalink

    Agreed. The augmentation makes the difference between a classroom and a holding pen. We know another large-ish homeschooling family who have a daughter with Down’s Syndrome. The mom has gotten a great deal of pressure from the county to put her into the school system where, to be fair to the county, there’d be a plethora of well-funded options available depending on the school. But. But.

    But. Put her littlest one away from her (five or six – I forget) siblings (who adore her) for most of a day? While homeschooling the others? She won’t do it, but I can understand her struggle.

    Like you said – what’s best is what’s best, home or at school. And for certain, some schools have fantastic programs for special-needs kids, but to gain access to any of them (at least, around here), the child needs to be ‘in the school system.’

    The golden times for the first family I described were the pre-K years – a constant stream of people were coming by their house: speech, OT, PT, the full monty. There was something scheduled just about every day of the week: hippotheray, aquatherapy, etc. Come kindergarten, though, it’s into the schools or the county essentially washes their hands. It’s a bummer, to say the least.

    Bah. I’m getting all cranked up again. >:|

    Jay Q.

  6. Posted December 9, 2005 at 12:27 pm | Permalink

    I hear you. :-)
    We keep the door open to homeschooling, for our eight-year-old son.

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