Hi, I’m Theo. I’m the parent of a child with special needs.
I’m still getting used to saying that to myself.
The Peanut was formally diagnosed with Childhood Apraxia Of Speech earlier this year. What is that? Well, it was described to us by a developmental pediatrician as a “neuro-muscular condition” that prevents my son from properly making sounds and forming words, despite his desire to do so and the apparent absence of physical deformity. The American Speech-Language-Hearing Association describes childhood apraxia of speech as a motor speech disorder which will not improve without treatment, and is not the same as other developmental speech disorders in which children progress to speech more slowly or hit speech milestones in a different order. It won’t get better with time, and the Peanut will not learn to talk without lots of speech therapy.
It’s taken over 2 years to get here. It began with the Peanut’s 18 month well baby check up. He was babbling a lot at the time, but we heard little in the way of real words, approximations of words, or parts of words. That was a little odd, we told ourselves, but I apparently was a late talker… and so it seemed entirely possible that the Peanut was just absorbing all the language around him, gestating, and incubating his ability to express himself. Our family doctor was less optimistic. He suggested we start with a hearing test.
We did, and discovered that the Peanut’s hearing was normal. By his two year old well baby check up, the doctor was recommending speech therapy. That led to an evaluation by a speech pathologist, who agreed that therapy was a good idea… after the six month (or more) waiting period to get an appointment with speech therapist the pediatric speech therapy unit of the medical group. We went back to our family doctor, and he recommended another speech therapy program… which was able to take the Peanut after about 6-8 weeks. Fine, we said. We were off and running, and it wasn’t even costing us much — I have a good job with good insurance that was picking up most of the tab. The therapist was reassuring that we’d have the Peanut’s speech difficulties on the road to a cured in six months.
The six months came and went, and progress was maddeningly slow. That lead to a desire to have the Peanut evaluated by a developmental pediatrician. In California, the first place to go with that is actually the State; California has had services for young children with various kinds of disabilities since the early 1970’s. That took a month or two to schedule and turned out to be something of a fiasco. There was an encounter with a mentally unbalanced person in a waiting room, an exam in the late morning that saw the Peanut melt down because he was hungry, and useless or downright scary words from the developmental pediatrician like “oh if you’d only brought him here a year ago, we could have gotten him into a group therapy class and that would have done wonders” and “be careful having someone evaluate him when he’s hungry because a lazy therapist will see him behave badly and then try to hang an ASD (Autism Spectrum Disorder) diagnosis on him.”
By this point, the Peanut was nearly three and three year-olds receive services from school districts, not directly from the state. That means a new evaluation by a different person. The people we saw from the state were supposed to help us make that transition, but never did… and the Missus and I were slow to follow up. In the immediate term, we decided to continue with therapy paid for by my insurance; the Peanut was getting along with his therapist and seemed to be making progress, however slow it was. That was fine, until about three months later when we discovered that a change in insurance carrier at my employer meant that speech therapy was no longer covered. The Missus and I decided on a two-pronged response: first, we would appeal the insurance decision (which was ultimately fruitless after six months) and second we would pay for individual and group therapy for the Peanut ourselves, at least until another round of evaluations with not one, but two different developmental pediatricians to try to get a handle on “the big picture” of what the Peanut really needed. Those appointments took more months to schedule.
Though we did not initially plan it that way, both of those appointments occurred in the same week. They could not have been more different. One was a 2-3 hour battery of tests to evaluate the Peanut. The other was a 20 minute in-person evaluation, after review of standard surveys on the Peanut’s behavior filled out by his parents and his pre-school teachers. We learned from two hours of testing that the Peanut’s visual reasoning skills are excellent — he completed or partially completed a series of puzzles, the most difficult of which should normally be completed by a seven year old. Other than that, all that evaluation was a bust. That developmental pediatrician suspected apraxia, recommended waiting before seeking a formal diagnosis, and suggested we try putting him in a class for high functioning children with special needs. The other developmental pediatrician was much more direct, after about a half an hour of face time. She felt fairly sure the Peanut has apraxia, and referred us to a speech therapist who specialized in children with apraxia to get a formal diagnosis. The results of those efforts convinced the Peanut’s speech therapist to finally commit to a formal diagnosis of childhood apraxia of speech this past Spring.
That diagnosis, combined with our mounting therapy bills, convinced the Missus and I to start the process of seeking services from the local public school district. That meant a new hearing test and another evaluation, which took weeks to schedule, followed by a meeting to formalize the IEP (individualized education program.) The hearing test and both meetings went well. The Peanut can most definitely hear. He got along well with the school speech therapist who evaluated him, and she immediately recognized his need for speech therapy. His IEP includes three sessions of speech therapy per week, once it starts in the Fall (by the time that IEP meeting occurred, it was nearly the end of the school year and the Peanut could not start until the new school year starts.)
Since then, it’s been a rough summer. The insurance appeal was effectively rejected. The Peanut’s behavior has taken a turn for the worse; he’s finally learned the words “yes” and “no” and discovered that he can assert his identity by saying “no” to absolutely everything, even when he might actually want to say “yes.” That behavior first got him dropped (not permanently dropped, but asked to “take a break”) from group speech therapy, and then slowed his progress in individual therapy (causing his therapist to suggest his expressions of frustration are not “age appropriate”.) It’s also forced him to change teachers for his swim class.
More importantly, I’m starting to worry about how not talking is changing the Peanut and how he relates to the world. When doctors and therapists asked about what the Peanut’s big strengths are in the past, we said “his desire to communicate and his sunny disposition”. I am now slightly less sure of either. We’re reaching the limit of what simple non-verbal cues can convey, and that is frustrating him. The “no no no” behavior is accompanied by a lot of tantrum-like behavior when he does not get what he wants. I see him shy away from attempts to mimic some words or sounds because he knows they are too hard. While he is comfortable with trying more simple cooperative play with the Missus or me because he knows we’re more likely to understand him, he is much more likely to engage in solo or parallel play with other children, even ones he’s known for a long time. I wonder how much the Peanut is starting to recognize that he is different from other people because he’s reaching an age where more and more of his peer group (of which he is one of the oldest) has already learned to talk. I wish I could ask him. Well, I can… but there is no way for him to give me an answer right now.
The Peanut’s situation also brings doubt, and doubts bring experts. If he throws some tantrums, someone will suggest that he is not showing age appropriate behavior and suggest we see an expert to discover if he has other learning differences. Ditto for cooperative play. And the fact that he cannot jump up and down well. And if he’s on the late side with potty training, that’s got to be a part of the “big picture” problem, right? Go see another developmental pediatrician. Or a neurologist. Or a psychiatrist. Or a psychologist. Or a physical therapist. Or an occupational therapist. All of whom will suggest that he is later at doing something than some, but not by any means all, of the children of his chronological age before suggesting additional therapy. Therapy, I might add, that may not help to solve his central problem, that should have been started a while ago, and that will likely not be covered by insurance.
Finally, I’m also starting to worry about how the way that the Missus and I see the narrative of his progress is changing. For a long time, we saw the Peanut as this happy kid who was slowly but surely conquering his problems. That’s a drastic oversimplification, but it conveys the sense that he was winning the fight, even if there were setbacks. Now, we are more tempted to see him as damaged by the fight, and with the outcome seeming far less certain. I suppose only time will tell which view is the correct one.
A friend told me recently “no one can describe how hard it is to have a kid with needs.” No, it can’t be described… the uncertainty, the desire to second guess the choices already taken, the slowness of each step yet to be made, the possible guilt (did this happen because of something I did, or just because of who I am.) I know that the Peanut is, for the most part, a happy, healthy kid… and that we are lucky that the Peanut’s problems can be treated with therapy.
Yet, I look back with longing. I remember that before the Peanut came along, I used to say “please God, ten fingers and ten toes”. Now I wish I could go back and say “please God, ten fingers and ten toes… and can talk.”