The Boy has had a busy couple of days. Yesterday, he was seen by an otolaryngologist (that's ear, nose, and throat doctor) to confirm that he is eligible for hearing aids and doesn't have structural issues afoot that caused his hearing loss. No, for those keeping score at home, that's another in the win column for the chemo drugs.
This morning, he had a hearing aid appointment. This was where the audiologist talked to me about hearing aids, measured The Boy's auditory response, and fitted him for the molded piece of the hearing aid. Also, The Boy got to pick out what color the actual electronic piece would be, and he chose dark blue. We asked him several times, and showed him other colors, but he was sure that he wanted the dark blue ones. That's the piece that goes behind the ear. So it will probably be pretty conspicuous. That's fine, though, because a conspicuous piece of equipment means that we'll see it more readily and pay attention. And, you know, keep it away from dangerous situations.
We were glad to have our good friend/adopted aunt come with us for the appointment. She has experience with little children in preschool settings and, more to the point, has hearing aids herself.
We need to decide whether to have his next hearing aid appointment, when they'll actually be ready and be given to him, before or after our trip to New Jersey. On the one hand, having them for the trip means that he will get to wear them and be used to them so that when he comes back and starts school, he'll already know how to wear them and tolerate them. Additionally, while on the trip, he and Grandpa can compare hearing aids, and it might make him feel better about wearing them knowing that Grandpa has them too.
On the other hand, not having them on the trip means that we don't have to worry about getting used to a new piece of equipment while away from home. I'll see what Musical Daddy thinks (whether he tells me after reading this blog or whether the two of us actually have a conversation...hard to say which will come first).
Also today was his appointment with the Early Intervention Services through the Pittsburgh Public Schools. If you're familiar with early intervention, you know that there's one division that generally goes through the state and takes children through age 3. Once they get to age 3, services are available through either the school district or another organization that might serve children in several school district, and that takes them up until they get to school itself.
Early intervention covers therapies such as physical therapy, occupational therapy, speech therapy, feeding therapy (which is part of speech therapy most often, depending on the specific issue), developmental therapy, and hearing and vision service as well. The Boy received OT briefly and PT for awhile in New Jersey.
When I arrived at the meeting, there was a person who seemed to be the coordinator, if not of the division at least of that meeting. Also, there was a physical therapist with a student extern, a speech therapist, a hearing teacher, and an educational audiologist. I handed them the results of The Boy's audiogram, and that qualified him for hearing services. Much of the meeting was spent on that.
I told them to evaluate him for speech, even though it hadn't been too long since his last evaluation, in light of the latest hearing test results. He was also evaluated for gross motor skills because he currently receives physical therapy services.
My mother wanted me to have them give him what amounted to an IQ test. The Wechsler test (WISC) is what she had in mind. I asked them about it, and they said that they didn't see a need. She said that the next time she sees this group of evaluators, she will ask them herself, because she thinks that there needs to be some sort of baseline for where he is performing. If he'll cooperate, it probably couldn't hurt.
In the area of gross motor skills, the evaluator said that The Boy seems to be at or close to the level where he should be and would not qualify for physical therapy through the school district. It is likely that we'd discontinue the therapy that he is getting soon, even though he does love to go, because there is less of a need for it. The evaluator said that as long as he continues to be active, and perhaps spends some time practicing the tricycle, which he really doesn't like, he'll be fine.
The Boy also did not qualify for services in the area of speech. The evaluator said that there were a few typical consonant substitutions (you know...saying W sounds for R) and a few that he didn't get right but would fix upon correction. She said that his speech is great and sounds typical. She said that it helped that his hearing damage didn't even start to occur until after his language had already developed, at least in terms of what he had heard.
The hearing teacher also did some work with him, trying to figure out how well he could locate sound and how he was hearing certain sounds. Interestingly enough, she was able to figure out that some consonant sounds did give him trouble. She had that LeapFrog Fridge Letters, with which he was familiar. She asked him "what does B say?" and he said "buh." And asked a few others...and then asked "What does S say?" to which he responded "I want another one." As in, he had trouble with S, a high-frequency sound, so he didn't want to say what it said. Interesting.
The evaluators were impressed with The Boy's intelligence. They were thrilled to see that he knew all his letters and numbers and could count with one-to-one correspondence. They were interested to hear that he had both the patience and the ability to put together puzzles that had many pieces. They said that he seemed very smart.
I told them that with his birthday being August 30, two days before the cut-off, that we wanted to wait the extra year to send him to kindergarten and not push him to go to school and be the youngest in his class. Not that he won't have social issues anyway, but I'm not concerned about him getting to the academic material in school a little later, nor am I concerned about him being "bored" in preschool because he needs the time with friends, and the school where he'll be going emphasizes that over the "academic" stuff, which he does on his own anyway. I'd much rather that, while he is in preschool, he spend the time just learning how to function in a group, and he can get all the letters and numbers and reading and writing from us at home, because that's what he likes to do in his spare time.
But as for hearing services, The Boy would receive visits, at preschool, from both the educational audiologist and the hearing teacher. The audiologist is there to check his hearing aids every so often and see that they are on properly and working. She is also going to arrange for a transmitter so that during teacher-directed activities, the teacher can wear a transmitter that will carry speech directly into The Boy's hearing aids. The hearing teacher will work with The Boy on understanding people more effectively, reminding how to look at people when he is listening to them (for lip-reading, too), and advocating for himself when he wants something to be clarified. It sounds pretty complicated to teach all of that to a 3-year-old, but...that's kinda her job, so hopefully she knows how to do it.
We will be having The Boy's very first IEP meeting on Wednesday, December 22nd. Unfortunately, Grandma will be away, but she will certainly look over the IEP and make additional recommendations, because that's what she does.
I was very impressed with The Boy over the past few days. His willingness to cooperate in clinical and evaluative settings has not diminished as he gets further and further removed from the constant stream of medical personnel that is cancer treatment life. He listened to me, he followed me to registration desks and offices and even to the bathroom whenever it was time to go. He likes the fact that the hospital has little tiny Boy-sized toilets.
I worried a bit about these appointments as his willingness to cooperate at home has been close to non-existent. He has wanted to be upstairs when I'm downstairs and vice versa. He has made messes and refused to help clean up. He had 4 toileting accidents today (one of which happened in the hospital cafeteria while I had the nerve to talk to someone else), which is a lot even for him. We'd been holding steady at 1 or so a day with the occasional accident-free day, so this is definitely a big step back. I'm just hoping that what friends who taught preschool tell me is true, that once he gets to school and sees that the other kids don't have accidents all the time and go to the bathroom when it's time to go, he'll get with the program. Or, Meatball will potty-train first and then The Boy will REALLY feel the pressure.
I do wonder exactly what it is that The Boy is hearing now and how he'll respond to having things improved for him in that area. It may be overwhelming. But he may enjoy the fact that the songs he hears have real words that he can understand.
I'm glad that we have everything started with this whole process and hope to see some positive results.