Maybe the CCHS lifestye really can get easier

I think I may have just gotten a glimpse of that mysterious light at the end of the tunnel. 3 ½ years of living with CCHS and fighting to get my son the help he needs and I think we might finally be making progress finding outside help. My frustration with the school district IEP team have led me to take an even more aggressive approach, as if that were even humanly possible. After many tears and sleepless nights, more so than usual when you sleep to the sound of a ventilator every night always ready to be in full emergency mode at any given time, I decided if the school IEP team is not willing to step out of their comfort zone and admit Wyatt needs more services than what they offered so far, then I will bombard them with private evaluations from every specialist and therapy service available until they realize, getting rid of this crazy mom is impossible. So two weeks ago I put myself and Wyatt through yet another depressing speech evaluation but this time particularly focused on his need for ASL instruction and his problems with fine finger movements to improve the accuracy of that mode of communication. The result, nonverbal with severe to profound expressive and receptive speech and language delay and a recommendation for Occupational Therapy along with Speech Therapy to improve and expand his ASL communication. A week ago, Wyatt also had a Physical Therapy evaluation done to address his balance and coordination issues to specifically point out the safety concern of constant falls. During that evaluation, the Physical Therapist also got a glimpse of Wyatt’s cyanotic breath holding abilities and in bold letters wrote in her report the need for behavioral support services. (Bonus points.) Legally the school district now has to also take into consideration these private evaluations when reevaluating Wyatt’s IEP services and goals. Since I am out of patience for this pass the bucket school district game though I went one step further and hired an IEP advocate the write up all the paperwork with the appropriate legal terms and to help represent Wyatt’s case at the next IEP meeting. Hopefully then the school will understand that I’m not willing to waste any more time with politics, it’s been 7 months now of trying to get him to start school, and that I’m serious about my request for an “appropriate” placement. Simply sticking the kid in a self-contained Pre-K ESE classroom with a one on one nurse by his side and a mediocre speech therapist who isn’t willing to expand her own horizons beyond picture communication techniques simply isn’t good enough. The reality is, Wyatt may never talk and even if he does, it may be years before he can form an understandable complete sentence. And even then, with his medical diagnosis, there will always be times when he is hooked up to the ventilator, his trach is inflated and he physically can’t speak because no air can pass by his vocal cords with an inflated trach cuff. Therefore, ASL is and always will be his failsafe primary mode of communication. And it is for that reason that the appropriate placement for my son is in a total communication program, where ASL and English are used simultaneously, where he cannot just be understood by an interpreter but also communicate back and forth with all staff and students around him and expand his ASL skills. Only then will he have the best opportunity to thrive, to learn uninhibited, and to gain an understanding of social norms… But that’s a speech for the next IEP meeting next Friday. Rant over… What made me see the light at the end of the tunnel was actually thanks to Wyatt’s Physical Therapist. She went above and beyond her job description and asked a Psychologist at the hospital to join us during Wyatt’s first PT session so the Psychologist could talk to me directly about the behavioral issues regarding the cyanotic breath holding episodes and to see what she can do to get us help in that area. That seemingly simply 30minute Physical Therapy session turned into a pre-evaluation session with a Clinical Pediatric Psychologist who then managed to get Wyatt scheduled for a complete Neuropsych evaluation. It usually takes months to break into that specialty and with minimal staff available in that department and an overload of patients waiting for services, I had a hard time holding back tears when that Psychologist walked in the door during Wyatt’s PT session. Finally here was someone who was willing to listen, who understood that this was not just a medical or not just a behavioral issue but rather that these two factors were connected and could not be completely separated. She could help us start to manage these episodes better from a behavioral standpoint to maximize Wyatt’s coping skills while minimizing the medical impact, instead of simply reaching for medication to numb this kid’s consciousness. This upcoming Neuropsych evaluation will hopefully not only give us as the parents a new reference to work with to help Wyatt reach his full potential but it can also open doors with the school district. I am forever grateful for that Physical Therapist and that Psychologist for reaching out and going beyond what is expected of them and looking at the needs of the whole child (and his parents).

Thank you!

I recently received a thank you message from a parent who’s child has just been diagnosed with CCHS. It’s humbling to read such a message when in my mind I originally started this blog simply as my own private therapy session. Getting thrown into this CCHS lifestyle, as I can now jokingly refer to it, can certainly mess with anyone’s sanity and none of it comes easy or naturally. It’s a huge learning curve that no one would voluntarily choose to go through and each year the battle simply continues. Receiving that thank you message couldn’t have come at a better time either. We’re in the midst of yet another big hurdle and hearing that my honest, straight forward, raw emotions approach of detailing our journey has helped another family going through similar struggles, well that just makes this whole “lifestyle” a little less scary, a little less lonely and makes my writing about it all a little more rewarding.

So I want to thank this parent for reaching out to me, unknowingly giving me a little more strength to continue this battle, and for encouraging me to keep writing about it all, not just for my own sanity but also to help guide other parents along the way. Thank you for reminding me that writing and sharing experiences is important!