F was in a full-inclusion preschool the last half of his second year of preschool. He loved the inclusion. He had a strong teacher. She focused on communication and assistive technology (switch access). Unfortunately, he only spent about five months in her program. When he aged out to kindergarten she strongly encouraged that we continue on with full-inclusion. She felt that type of program could and would be really successful for him.
F's kindergarten year was hard. It had nothing to do with the school and the program. I suppose part could be due to the program, but I was really preoccupied during this time to really pay that much attention. Things appeared to be going well and progress reports seemed to show he was progressing.
F's sister, Cienna, had been diagnosed retinoblastoma when she was three weeks old. She was now two and diagnosed with extra-occular retinoblstoma (a very, very bad thing). This put her cancer in a more serious category and took the priority of trying to save her vision to trying to keep it from spreading. She would start treatments during April of F's preschool year and it would go on through the summer. Her treatments would end, not because she responded well, but because her young body could not tolerate them any longer. Shortly into F's year of of kindergarten, she would be diagnoses with metastatic retinoblastoma on a routine MRI. We were all devastated to say the least. Cienna was handed a death sentence...literally. So we were all a little distracted and I'm sure F was too.
So F's kindergarten year was pretty much a wash. I can't say if he met his goals or not. I can say that being around those healthy kids at school was probably a highlight and an escape for him at times. I can look back now and say I should have never sent him to school that year. He should have stayed home with Cienna and I. They were very close and her decline and subsequent death would be challenging for us all. Cienna would pass away February 5, 1998. After that time, I believe F's probably slept his kindergarten year away, or at least faked sleeping it away for the same reasons I could not get out of bed. We were overwhelmed by sadness and grief. Again, looking back he should have stayed home with me.
First grade through half of third grade F would continue to be a full-inclusion student. He enjoyed his peer friendships and interactions. He also enjoyed the curriculum. The problems were that there was little follow through with the instructional aide due to lack of support with his goals. While they should have been modifying curriculum and focusing on communication for him, F spent the better part of those years being an accessory to the classroom instead of a participant... if that description makes any sense to you.
They tried to work on communication by focusing on yes and no using his strength of a head turn. However, the individuals involved in implementation, did it so inconsistently or documented it incorrectly that they were constantly changing which head turn was for yes and no. Poor F had to be so confused. Granted communication was hard for us at home too. We had no definitive yes and no and we were probably bucking the system every time the school changed their method and didn't communicate it to us.
So consistency in program was the hardest obstacle in full-inclusion. Accommodating him in his wheelchair and his need for equipment for toileting and such was also quite a hurdle. Then when we began to have a hard time finding a home health nurse for staffing they didn't want him to come to school. They tried to tell me he couldn't come, even though it stated no where in the IEP that I had to provide a nurse for F to participate in a school program.
Curriculum support was nonexistent. There was no modification of the curriculum at all combined with the inability to confirm his understanding made reinforcement impossible. Although, I will say that I have learned the last few years that he was a sponge, still is a sponge, soaking up knowledge and information all around him.
The instructional aide was changed shortly after we no longer had a nurse available to send him to school. Or due to family circumstances chose to use our nursing partly for support at home. The district nurse told me this was done because the new aide had much better qualifications. She was a respiratory therapist and they felt she better suited his medical needs. She was over confident because her dad was a paraplegic so she thought she knew it all about transfers, F's needs, and care. On the two days a week I did send a nurse she talked trash about me the entire day to my nurse and to my son. I tried and tried to get her removed, but the district deemed her appropriate. That is until she called me to pick him up for emergency medical care because she broke his femur while moving him from a stander. As of a few years ago, she still had her job.
So in a nutshell, full-inclusion meant for my son was absorbing knowledge and information by being around it. Inconsistency in goal implementation, lack of support services, equipment, and curriculum modifications necessary. He was well socialized and excelled in making friends even without a consistent ability to convey his understanding of them. The "we can't tell if he understands us"would be consistent all through his records because if you can't speak, are in a wheelchair, and visually impaired the instructors, support staff, and administrators automatically assumed he is incapable of understanding the English language. He was also assumed to be very low functioning intellectually. I was even told at times that I only read into his behavior what I want to see. That I've convinced myself that he is smarter than he is. It was "coincidence" that he laughed appropriately at jokes or in audio books that were funny. It was such a struggle and a fight for me. I can only imagine how F felt. He was more like a classroom mascot, but these years in middle school would be far better than the time he spent in a middle school special day class.
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