Thursday, September 14, 2006

At the end of August we did a speech evaluation for Connor. We wanted a baseline before school started...Actually because we thought he was doing so well, it was kind of a 'let's make sure' we are making the right choice in sending him to a school program.

Last November, when we started this whole thing, Connor was rated at having a greater than 25% delay in cognition and communication development. He started speech therapy in late December. We saw some great progress throughout January. In February we saw skill loss again so I arranged a visit with the pediatrician...To test for celiac's (based on development and other dietary issues- test was neg)...And with a developmental peds. The developmental ped visit in April ended with a diagnosis of PDD, pervasive developmental disorder, an autism spectrum disorder. The therapist changed his program a little and Connor seemed back on track. In June we added an OT, occupational therapist, and a once a week visit to a speech based play group. Things were looking up, however, we still decided to place Connor in a school program come fall. We also started genetics and metabolic testing. Perhaps there is an underlying cause for all this. He did have some high levels, particularly lactate, pyruvate and their ratio. We are currently (ANXIOUSLY) awaiting the most recent results.

Summer zoomed by, lots of progress, lots of happy therapists and it's time for a speech eval. We were all so happy with his progress, everyone kept saying maybe we're jumping the gun on the diagnosis and school...and then he was tested. Reading the report is like trying to watch a ping pong ball game...he's all over the developmental map.

On receptive language he did well, was able to identify objects, body parts, clothes and understand verbs both in context and pictures. He doesn't get/use pronouns, plurals and -ing. On expressive language he was again able to identify objects, use 2-3 word combos, answer what and where. He had some skills way above age range (counting), but lacked many at age range tests (plurals and -ing).

They did a language sample also. The Mean Length of Utterance (MLU) for a child aged 27-30 months (he was 30 mos at test time) should be 2.0-2.49 words. Connor's MLU was 1.34, which is consistent with a child 19-22 months. Add to that he is very soft spoken and doesn't understand how to adjust his loudness based on ambient noise, instead he increases pitch. Also, he has a bad habit of imitating inappropriate intonation. If you speak in a sing-song voice, he'll use it back at you. The other major concern is jaw weakness, which would affect his speech.

The one bright spot is his articulation. He has mastered many sounds beyond his age level. So what he says, he says very well. But he just doesn't say enough. In the end he was 'rated' at having a greater than 33% delay. So not only is he not doing great, he's actually slipping even further behind. My amateur explanation is that between the ages of 2-3 most kids are in the middle of a learning explosion, so while he is making progress, it's just not enough to keep up with other 2.5 year olds. Whether that's true or not, who knows, but it sounds good.

So, I am anxious for Oct 1 and the start of school to roll around. Perhaps being immersed in a learning environment 2.5hr, 3 days a week will make a difference...perhaps we'll get something out of this next round of metabolics tests...perhaps he is just a 'silent genius' (There are two other boys he needs to talk over)...either way...we'll keep plugging away, keep telling him to 'use his words' and eventually, I have faith, we'll break through....after all, it's only been 9 months. It took 2 YEARS for Austin to catch up after his seizures robbed him of development. I think my boys want to see how much I can handle at one time.

Speaking of Austin, he finally has his OT in place. Julie will begin working with him next week. I almost feel like I am wasting her time. I think the issues that were concerning us at the end of the school year are mostly gone...or maybe that in context to how far he has come they seem so trivial...regardless, let's see what she has to say and go from there. Also, I am working to schedule his next EEG and ERG in Boston. Knock on wood, he's been seizure free for 10.5 months. Hard to believe that it was a year ago, at his 3rd birthday party that he started having clonics after 14 months of being SF.

Back to Connor real quick. I'll be meeting with someone from the County ARC (Assoc of Retarded Citizens- I hate that) and we'll be working on getting Connor's eligibility papers from OMRDD (Office of Mental Retardation and Dev Disb) so we can get him on the Medicaid waiver. I am hoping, like Austin, this will be something we will rarely need, but it's better safe than sorry to have it in place, should it be needed. Once Connor is on the waiver, he's approved for 7 years before you have to prove medical eligibility again (financial elig. has to be proven every year).

So I guess that sums up the medical stuff for the two kids. Oh, I should really add something about Ben. He LOVES school and my MIL says he's doing well...or at least he's keeping his clothes on, unlike another child.

Ok, I'm really done now. Later....

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