Tuesday, September 13, 2011

Diagnosis

Along with all our infertility drama this summer, we also have been in the process of trying to get a diagnosis for Sawyer. He's been under the Developmental Delay label, but now that he's 6 that label is no longer appropriate according to school system. We've been taking him to a developmental pediatrician but those visits haven't led to any useful information, which has been frustrating given that we have to wait 4-5 months for each appointment. A parent of a child in Sawyer's ECSE class last year mentioned to me that their son had been diagnosed by a local psychologist, Dr. W, so we made an appointment with her. The assessment took place over two days, with a total of 9 hours of testing. I couldn't imagine Sawyer sitting through 9 hours of anything, but Dr. W and her assistant did an amazing job of keeping it fun and light and after the first day he was excited to go back! After the testing it took her a few weeks to write up her reports and recommendations. Soon after this we learned that Sawyer needed to be reevaluated by the special ed team at his new school, so we scheduled all of those assessments too. (The testing with the school psychologist was especially memorable, because the earthquake happened right in the middle of it and we had to evacuate the school! Sawyer was unfazed.) Finally about a month later the results were all in.

The diagnosis: developmental mixed receptive-expressive language disorder and phonological disorder. Basically, this means his brain does not process language in a normal way, so he has a hard time both understanding and producing language. He does not have autism or ADHD, and he is not intellectually disabled - although he scored in the ID range on some of the testing measures, the team believes it's because his learning disabilities are so pervasive. According to Dr. W he has a lot of potential for improvement and growth.

So that's where we are. Even though it's a formidable diagnosis, I feel relieved that we finally have some answers. A name for his difficulties. And there's a lot that we can do to help him understand more and say more, especially in the next few years. At the eligibility meeting all of his teachers expressed what a good kid he is and how hard he tries. One of them pointed out that for Sawyer, daily life is like living in a foreign country where no one speaks your language. It's such a struggle for him, and he still manages to be happy and sweet 99% of the time, which is pretty amazing to me.

The next step is coming up with a new IEP (individualized education program) for him and the school will decide which services he qualifies for. We're hoping at a minimum to get speech, occupational therapy, and possibly extra time in a special ed class at least a few times a week.

4 comments:

  1. IEP meetings are more like IEP confrontations. depending the district, you may have to truly fight for him. because IEP's involve money. they want to give you the bare minimum....anyway, i know you'll do your research. just be prepared to fight. also, a good suggestion...bring someone else to help take notes, to keep you focused. if eric can't make it, make sure you have that support there. you'll need it. good luck!!!

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  2. Thanks Terina! This will be our third IEP meeting, but our first at this new school so I am nervous about it. The previous ones have gone really well with no pushback against what we've asked for, but you never know what will happen this time. We have written recommendations from our psychologist so I'm hoping that will help us make our case. And I'm definitely bringing Eric with me.

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  3. I agree! My oldest is a senior and I STILL go to his IEP meetings and raise hell if need be! My son has dyscalculia (dyslexia for numbers basically) and I am always fighting with his schools since we moved to FL to make better resources available for him since everything is always focused on reading! Keep after them and fight them tooth and nail if they aren't doing what you feel they should for Sawyer! HUGS and I know you will do great!

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  4. Wow. I'm so glad that yo have some answers. I hope the meetings go well and that things are good at Sawyer's new school.

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Give it to me straight!

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