Smiling on the Outside and Screaming on the Inside

As I mentioned yesterday, I had a meeting this morning with the school district's special education program regarding services for our DS, "Rusty". What an incredibly frustrating experience it was!

I knew going in that the district is financially strapped and was not going to want to pay for services if they could at all avoid it. The hospital speech therapist he's been seeing had warned me that he might not qualify at this point. So I was not surprised to hear that he did not meet the criteria for speech and language impairment as set forth in the CA Ed Code. It's a stringent standard- the child has to score below the 7th percentile for his/her chronological age on two or more standardized tests of speech & language development. While I believe that this is overly strict, nothing would be gained by arguing the point with the district special ed personnel. Their job is to follow state law, not to write it.

What frustrated me was not that the district determined that Rusty did not meet their eligibility criteria for special education, but that the evaluation revealed a significant discrepancy between where he is in terms of his language capabilities and where he really ought to be.

On the non-verbal portions of the IQ test, he scored well above average- and this was very likely an underestimate because he got bored partway through the block design subtest and decided in typical 3 year old fashion that he'd much rather stack the blocks than copy the design that the evaluator had made. At home, I've seen him copy complex tangram patterns that are designed for kids several years older than him.

On the verbal portions of the IQ test, however, he scored about 3/4 of a standard deviation below the mean. This is considered within the normal range, but to me it raised a big red flag. Typically, verbal IQ and non-verbal IQ differ by less than 2/3 of a standard deviation, and for Rusty's scores the difference was nearly two standard deviations (or more if he indeed underperformed on the block design subtest). DH, Miss Scarlet, and I all tested within the gifted range and normally there's a high correlation between parental/child IQ scores and also between siblings' IQ scores.

On the speech and language assessment, there were also wide discrepancies between the various subtests. Rusty scored above average for a subtest that was primarily a memory exercise (repeating complex sentences spoken by the evaluator). On most of the others, he was somewhat below average. And on a few, he was quite a bit below average.

It is so clear to me that Rusty does, in fact, have some sort of speech and language impairment. If he had low scores across the board and came from a family who also tended to score low, then there would not be much cause for concern. But he's got certain scores that are well above average and he comes from a very high-scoring family. I'm positive his high baseline is masking the disability, because it causes him to score within the normal range even with the impairment.

Fortunately, we do have insurance that provides coverage for speech therapy so we can continue getting Rusty the help he needs. But what if we didn't? Our therapist charges a whopping $1400/month for one session per week. There's no way we could afford that kind of expense if we were responsible for the full cost.

All We Care About is Talking, Talking Only Me & You

I haven't talked all that much about our DS, whom I call "Rusty" for the purposes of this blog. We suspect he's what's known as "twice exceptional"- both intellectually gifted and disabled. In Rusty's case, he has speech and language delay. Although I've got serious reservations about getting involved with the government-run schools, tomorrow we've got a meeting with the district special education program to discuss an Individual Education Plan.

Our oldest, Miss Scarlet, has always been very advanced verbally. At 14 months, she answered my parents' first names when asked the question "who is that?" At 16 months, she knew color names including secondary ones (in fact, her first color word was "purple"). At 18 months, she knew all the letters and their sounds and was speaking in phrases of 3-5 words or longer. By 2 1/2, she was speaking more or less fluently, albeit with certain immature pronunciations (e.g. "f" instead of "th"). Now at age 6, she has a more sophisticated vocabulary than a sizable percentage of adults.

When Rusty had slower language development than his big sister I was not initially all that concerned. He was more advanced in certain other areas than Miss Scarlet had been at the same age. When he was 12 months, he could build a stack 6 blocks high. He excelled at puzzles, and at 2 1/2 figured out how to play a DVD without help (a two-step process). As he clearly was bright, I just figured we had the stereotypical mechanically inclined boy and verbal girl.

As he got older, however, I began to worry about his speech, particularly his articulation. Even though I spent all day with him, I had difficulty understanding much of what he was saying. He would say a whole long phrase and I might be able to figure out a single word. People who saw him less frequently like DH and other relatives basically found his speech unintelligible. I hoped he might just need some more time to develop, but eventually my mom goaded me into having a formal evaluation by a speech therapist. He was diagnosed as having articulation disorder with receptive and expressive language delay.

Between June of last year when Rusty had the evaluation and when he got off the waiting list for therapy at the end of September, his speech did improve quite a bit. But he still was behind what was typical for his age. He saw the therapist twice per week until our baby was born in January, and has been going once per week since we resumed therapy in February. Our health insurance covers 30 sessions per year plus another 30 with authorization, but we're still responsible for a $30/session co-pay. Fortunately, my parents have been generous enough to reimburse us for the co-pays thus far. But now that he's 3 and old enough to be covered under special education, we'd like to try to get the district to provide speech therapy.

I'm hoping that he'll continue the progress he's been making in therapy and outgrow the need for it before he reaches kindergarten age. If not, the district does supposedly offer an independent study program, which might be a possibility if there aren't too many strings attached (yeah, right).

This afternoon, I came across an intriguing book entitled The Einstein Syndrome: Bright Children Who Talk Late by Thomas Sowell, an economist at Stanford's Hoover Institution and the parent of a late-talking child. As I was reading the reviews, I recognized my child in what they were describing:

• analytical
• musical
• strong-willed and stubborn
  
• slow to toilet train
• loves puzzles, blocks, and Legos
  
• loving and affectionate but sometimes aloof
• concentrates on some tasks & ignores requests/directives to perform other tasks
• can work almost every tool and gadget in the house
• relatives who are tech geeks and/or musicians

I've requested the book from the inter-library loan program. I'm curious to see what Dr. Sowell has to say in it. From the reviews, it appears that he takes a skeptical view of speech therapy. We've found that to be helpful with Rusty, and I'm not going to discontinue it based on the opinions of a single author. But I'm hopeful that the Einstein Syndrome book will help me better understand my little Mr. Mechanical.