Sunday, November 8, 2009

The Annual Stress-Out

Testing stresses me out, but the kids could care less

Every year, children in the early intervention system are required to have a full evaluation of developmental skills. This is important, because it helps with setting new goals and in monitoring developmental growth over time. Unfortunately, it also totally stresses me out.

If the little guy scores poorly, then I am afraid that we aren't helping him enough and for the implications of a language delay on his future. If he scores too well, then I am afraid he will get kicked out of the system entirely. For a kid with congenital hearing loss, getting "kicked out" of the system could be devastating, because without ongoing therapy the child will lose ground and begin to slip behind their hearing peers.

Nolan recently had testing, with the Preschool Language Scale-4 (PLS-4) and the Arizona Articulation Proficiency Scale-3 (AAPS-3). When the testing was completed, our speech therapist told me that his receptive language score was 117. I took this to be the percentile, and my panic button was immediately triggered. For those who missed the third grade, the 50th% is average. This would have meant that Nolan's receptive language was amazingly high.

Yes, I was thrilled that my little word-hound was doing so brilliantly well (his expressive score was 108), but we are coming up on his CPSE (Committee for Preschool Special Education) meeting for entering the school district. Early intervention allows a child with hearing loss to remain in the system without a delay, because the hearing loss has a high probability of causing a delay if untreated. The school district system doesn't work in the same way: the child must have a demonstrated academic delay in addition to their disability to qualify for services. Otherwise they are shunted to a "504" plan- for a preschooler who does not yet attend the neighborhood school, this means that they receive exactly nothing.

My angst stems from the worry that Nolan will be denied all services once he turns three years old, which will mean that he will begin to lose ground in the two "interim" years between early intervention and elementary school. At least once he's in school, there will be regular classroom evaluations to monitor his progress. A child on a 504 in preschool receives no regular monitoring.

Of course, all of this angst is premature. For one thing, Nolan has another 6 months or so before our big CPSE meeting. For another, Nolan's score of 117 was not a percentile rank. It was the standard score, which translates to a percentile rank of 87%. Still wonderful (and ahead of most of his hearing peers), but not so amazing as to have him nearly ready for kindergarten at the age of two. His expressive score is at 58%, a little better than average. And his articulation is at 38%- at the low end of the normal range.

Our speech therapist wants him to remain in therapy, which is wonderful. She mentioned the need for ongoing therapy to maintain his language level, and the fluctuant/progressive nature of his loss to date. His loss used to be 40dB rising to normal, as estimated from ABR- it is now 60dB rising to 35dB in his better ear (moderately severe rising to mild), and 60dB rising to 45dB and dropping back down to 55dB in the other ear (moderately severe rising to moderate). We have another hearing test on the 23rd of November, so we'll see if those levels have stabilized.

We'll cross the CPSE bridge when we come to it. Hopefully our local school district will understand the needs of hard of hearing children to continue with speech and language therapy. In the meantime, I'm glad that we have a nice, long break from the formal testing!


AimeeTheSuperMom said...

I used to stress about those things, too. Every single time we had his annual or semi-annual evaluation, I'd sweat it. Mostly, I was worried that we wouldn't show any progress.

I think I can really help you out a little bit with some of those IFSP, ARD, IEP, etc. things. If you want to e-mail me, I will give you my phone number.

rouchi said...

I really hope all that is the best for both of you happens to you.Hard work always pays off.All the best.

Pattie said...

Just stand your ground, Leah. Push for what you want for Nolan and don't back down. Unfortunately, we sometimes have to use our kids "deficits" to their advantage. That would be a mortal sin if they stopped services for him at this point. A sin. Stay strong. Stay tough. Nolan trained you that way! LOL! Hang in there and keep doing what you are doing because he sounds like he is really making great porgress!

terena said...

I know what you mean. And the specialists don't help with the stress. Just the lingo and the acronyms are enough to make a mommy yell, "What?" It sounds like he's making progress, but needs more support, which is perfect for the school district.