Well, it has happened. After spending nine years at the same school, my son is now going to middle school. He is doing so well but I’m going through transition problems.
It was in October of 1991 that Patrick started preschool in a special education preschool in our district. It was right across the hallway from the deaf-hard-of-hearing preschool, a program I could find out more about than the one he was going into. No one knew much about the program and less about his diagnosis of oral motor dyspraxia. Deafness is well understood, but apraxia/dyspraxia was foreign to almost everyone. Few could understand that a child of normal intelligence could not do anything as “simple” as talk.
But Patrick couldn’t speak. I waited and waited for my first born to talk. He only had about a dozen poorly enunciated monosyllabic sounds for words, except for one actual word: “teddy,” his word for “friend” or “kids” (one of his first friends is named “Teddy”). He was almost three years old before he started to use “ma”, and even then it meant he wanted something. (Which when you think about is the usual use of the word even now the call of “MOM!” from any of my three kids means they need something.)
When he did discover he was different from other kids, Patrick completely stopped using his voice. He would only use sign language (70 words learned in one summer). This made most people who saw us in the playground think that Patrick was deaf. They would ask me with interest about having a hearing impaired kid and then slink away in confusion when I explained that he had a severe speech disorder. This was beyond their understanding. Both Patrick and I were feeling very much different, and lonely.
It was strange and a bit sad that the only place we felt like we belonged were the hallways of our local Children’s Hospital. Patrick got speech therapy twice a week and ended up getting hospitalized four times with croup between the ages of 18 months and three years. It was truly weird to be stopped in the hallway by a couple who saw me and said, “You look like you know your way around…” and, in fact, I did know how to get to the clinic they needed.
Eventually, Patrick’s speech language therapist went on maternity leave, and he outgrew the croup. He was released from the hospital after his last bout of croup the day before he was scheduled to be evaluated by the school district. Patrick did terrible on EVERYTHING and was a shoo-in for their program. It was time for our first transition, from hospital to school.
Patrick entered a very special preschool. It was a program that was started about a decade before, having been developed because children who could hear but not speak were being inappropriately placed in the hard-of-hearing program. The preschool staff included a teacher, aide, SLP and OT/PT, all of whom worked as a team.
After two weeks in this program several things started to happen:
- Patrick found a group of kids just like him; he was no longer so “different”.
- During monthly parent meetings I learned we were not alone (and I found out about services like the Scottish Rite)
- I learned about a whole new world of Individual Education Plans and L-O-N-G meetings.
- Patrick started to use his VOICE!
Patrick attended the preschool for three years. He started twice a week therapy when he was four at Scottish Rite. By now Patrick was learning to speak and use actual sentences.
My vocabulary continued to increase too. As the years passed, I was introduced to the concept of MLU (Mean Length of Utterance), dysphasia (language issues), functional dysarthria (muscle weakness) and static encephalopathy (which I understand to be neurology-speak for “we know something is wrong, but we don’t know what, and it is not changing”).
Then came kindergarten. Patrick was moved to a special education K/1 classroom across the hallway. This transition went smoothly, since he still saw the same school speech therapist. We decided to also enroll him, in the afternoons, in the PTA-sponsored kindergarten extension (a tuition-based program to provide parents the option of full-day kindergarten in a school which only offered a half-day program). This gave Patrick exposure to a regular education classroom that was smaller and less structured than a regular kindergarten. He thrived in this classroom. The teacher was great and understanding, even to the point of not scheduling field trips on the two days a week that Patrick missed class to go to the Scottish Rite speech clinic.
On the first day of first grade, I went to pick up Patrick at his special education K/1 classroom. The teacher told me he wasn’t there! She had moved him that morning to the regular first grade classroom and would function as his special education resource teacher. AAACK! I felt very unsure about this new development; this was a total change! However, the speech therapist was the same, and there was no other change She assured me that since Patrick did so well in the regular afternoon kindergarten the year before he would be fine. Another child that had been in her class, who had gone to that program with Patrick, had not fared as well and would remain in her classroom.
Patrick continued to thrive. The first grade teacher was warned that he might not speak much in the classroom, but after an initial period he started to contribute to the classroom discussion. It helped that Patrick knew many of the kids from the regular kindergarten. At this point, we could have probably transferred him to our neighborhood school. But since this school was only about a mile further away and amongst our choices we kept him there, and even send our younger kids there.
At the end of first grade, the Scottish Rite told us it was time for Patrick to graduate. Oh, NO! I was used to going there twice a week since he was four. THEN the school therapist said it was time to switch to a different school therapist. Patrick was getting too used to her, and the other therapist was more appropriate for older kids. What would we do?
Well, both therapists advised us to give Patrick a therapy vacation and call a speech/language clinic for older kids they both recommended the same one. Even though I now had to pay for speech/language/reading therapy, it was only once a week and Patrick got great help with his reading comprehension (including deciphering math word problems) and expressive writing.
At least we did not have to change teachers. The first grade teacher decided to teach seond grade the next year and Patrick was again assigned to her classroom. She had been trained as a reading specialist and was reknown for her ability to get all sorts of kids to read. When Patrick went to third grade she became the school’s reading/Title I specialist. Between first grade, second grade AND going to her for reading resource for the next three years, Patrick benefited from her talents for a total of FIVE years.
Finally, Patrick graduated from elementary school. Both his preschool teacher and the reading teacher he had for five years retired. He “graduated” from the private clinic. My support system was getting completely changed!
Now Patrick is starting middle school. I know that the speech therapist there is wonderful, and all the teachers I met there are wonderful. Yet, I still have trepidation. But Patrick insists on growing up. He won’t hug me; his notebook is a mess; he wants to play on the computer instead of do homework and he wants to walk home with friends. I went as a chaperone to the sixth grade skate party. There I talked with other parents, and THEY are experiencing the same thing.
Wow nine years after finding a support system in one particular school, because we were different from “normal” families, he has started middle school as a “regular” kid. And I now know a whole group of parents of twelve year olds that are as confused as I am!