Down the Rabbit Hole

I haven't written in months because it is nearly impossible to finish a thought, conversation, meal, or read an email or article. Having a child with intense needs as FMO has, and a toddler is so overwhelming. At the suggestion of a friend, we finally decided to take FMO for intake at RCRC (Regional Center), and see what help they can offer. We have avoided it for more than eight years because of the Autism label they would use to qualify him for services. We did not want the stigma on him while trying to establish placement and services, when for years we dealt with people who couldn't see anything else. Now, we have this amazing and supportive team. All service providers and school staff are on board with the program, and the most important thing of all, there is an IEP we agree with. The IEP is the legal document that ensures he has the right to receive services outlined, and obligates providers to work with him towards his goals. If anything ever happens and he cannot attend his current school for some reason, that legally documented Individualized Education Plan goes where he goes. 

April was FMO's triennial IEP. That meant lots of assessments this year, which usually means an emotional time for me. Even though the purpose is usually to determine maximum levels of capabilities, the reality is highlighting all areas of deficit, especially in the case of qualifying for new services at RCRC. I am usually so busy, I don't even have time to dwell on worries for the future, but any time assessments come around, it feels as if I am suddenly aware that all along I was perched on a tiny ledge overlooking the abyss. It becomes difficult to dismiss crushing fears, despite the chorus of internal voices chanting, "Snap out of it. You've got shit to do."

The emotional tide subsided after the slew of assessments. Then it was back to business as usual. FMO has made incredible strides academically, with language, and with his music. OT was very beneficial, and there was progress made in speech therapy and horseback riding. OLO is hysterically funny, adorably sweet, and Hell on wheels, depending on the moment. It has been a wild ride so far. She is obviously wicked smaht, and essentially ASL bi-lingual, which has made her ability to get her needs met vastly easier than us trying to decipher her limited verbal consonant production. It has helped reduce, through not eliminate, the intensely loud demanding utterances she makes at times, which no one wants to be subjected to, least of all FMO.

FMO has been having fluctuating issues with his Hyperacussis/hearing sensitivities for years. The last few weeks of school it spiked. Maybe from the changes in schedule, increase in chaos, and there were quite a few barometric pressure changes. Days when it looks like it is going to rain, but doesn't, are especially hard. I have tracked it since last year, and it is quite predictable. Though he has trouble other times, it is worse when low pressure systems are present.

The plan is to find a new audiologist, and hopefully have him tested and treated for the Hyperacussis. Only some clinics treat it and there are a few options and differing data on what is effective and what results are evidence-supported. I am focusing on ASL and Cued Speech. I cannot wait until I am completely proficient at either to use them all the time. I find the only way I improve is to use them. I have the Cued Speech hand shapes and positions down, but I am slow as molasses. It doesn't matter. The more I use it, the faster I get. FMO is already picking it up, and I get more attentiveness and eye contact than most any other time. It feels like just the right combination of visual language tools to get his comprehension up. Cued Speech was designed as a Deaf literacy tool, so it is perfect for reading. I have always said we are doing a Total Communication approach, but I am trying harder to make that a reality.

I watch his social interactions, or more to the point, lack there of, and it becomes more obvious as he gets older that the gap widens between him and his peers. I watched a little HOH girl I know, E., who incidentally has a diagnosis of Auditory Neuropathy also. Her mother told me she plays with the kids at school, but doesn't have play dates with anyone. So why is she very different from FMO? She speaks like I would expect someone with hearing aides to speak. She relies on lipreading and ASL to communicate. I know what a lot of people would "A-ssume" about FMO, but watching OLO, his little sister, develop language, I can see everything he missed by not hearing properly. I see how so much of her social behavior is language-based. How can a person behave like a culture based on language they do not hear or comprehend. If Deaf children were not given a language, I believe they would be much the same. Everything I read about Deaf culture supports this POV. If I can give him an entire language he doesn't need to rely on verbal input, I believe he will acquire the accompanying social skills. With Cued Speech, he can continue to learn English and reading. So much of his progress thus far has been improved or accelerated by sign. It just feels so time crucial as his optimal language acquisition
window is closing, at almost age 10.

There is a roadblock I keep hitting up against. The county ASL teacher feels the county will not allocate ASL lessons for him based on the way the law is written to provide ASL services for Deaf and HOH only. No one on the IEP team feels this makes any sense. We have documentation that he benefits from the use of sign, and the Deaf teacher herself strongly agreed it is ideal for him. I have high hopes for our upcoming meeting next week that we can make progress with RCRC, since they serve the Deaf and HOH population. Until then, I am doing my usual post-school year Spring Cleaning, and trying not to fall to the temptation of sloth-dome, but plan to make best use of the Summertime to address concerns I am too swamped to approach during the school year.