CCHS - IEP meeting round 2

I’m so over this. People just amaze me and not in the good sense.

Yesterday we had another IEP meeting and after 7 months of battling the school district on my own, this time I brought an IEP Advocate. We addressed every issue, from the lack of timely response from the district, to the lack of follow through on everything previously discussed in the last IEP meeting back in October, to the ongoing district’s denial of the ASL issue. What it boils down to is this. Wyatt has yet to start pre-K and the school could not explain their lack of implementation. The school also could not explain why the district’s Physical Therapy and Occupational Therapy evaluations have not been performed yet. And when it comes to the ASL issue, the school is simply ignoring it altogether. They are continuously trying to bypass the issue and don’t want to make a decision on an appropriate educational placement. At the same time however, they also are not willing to write a letter of refusal which is what they legally have to do if they disagree with my placement request for Wyatt to attend a Total Communication Program (ASL and English are used simultaneously). The thing that neither I nor my IEP Advocate understand is why they are ignoring all the medical documentation in Wyatt’s file that supports such placement. They are scared of liability because of his cyanotic breath holding episodes yet they are refusing to accept that ASL has been the only effective communication mode that has reduced the number of daily episodes. He has medical clearance to attend school. It is also documented in writing that he used to have 15-20 episodes before using ASL which has been reduced to 1-5 daily episodes with the use of ASL. I even showed them a video to show them what exactly a cyanotic breath holding episode looks like when the communication barrier becomes a problem. Every medical documentation on file, including a private physical therapy evaluation, clearly state that ASL is his primary mode of communication and it needs to be supported to prevent these episodes as much as possible. It is also documented in the school district’s speech and language evaluation back from September that Wyatt is non-verbal and uses ASL. The same is documented on his private speech evaluation with detailed ASL therapy goals yet the school is not willing to even write down any ASL goals because they say they don’t know how many words he understands and can signs. That is a straight out lie as the district has had that detailed list of vocabulary words in their records since their original evaluation back in September. Additionally, they have a list provided by me detailing 4 pages worth of vocabulary in the form of the curriculum we use at home proving that he is far past basic vocabulary, plus I showed them videos of him signing. Educational goals in IEPs, such a recognizing 5 out 10 letters, are established without ever first testing what the child knows. Therefore their argument about needing a different approach to set ASL goals is false. This is not a personal preference, this is a medical necessity to prevent these life-threatening episodes and the school is not even willing to acknowledge that fact. After 3.5hours of this dance we made it very clear to them that a decision had to be made that day. The school only had two options. They could either write a letter of refusal and then we will file due process, which is a fancy term for taking the matter above their heads, or they can get that illusive district person who according to them has authority to decide this matter on the phone and settle this. Side note, legally the IEP team has the authority to make placement decisions even when it means the most appropriate setting for a child is in a different school. Worried we will file due process, the school asked for another meeting scheduled for next week that will include that illusive district person who according to them has authority to decide this matter, plus members of the staff from the Total Communication school to better assess the ASL issue. Our objections were clearly noted that bringing someone new to the table who has no knowledge of what has been going on for the past 7 months is inappropriate as it will start this process all over again. Given the currents team indecisiveness however, we agreed to play along knowing that the next meeting will most likely also be inconclusive and we will file a complaint with the state regardless of that outcome. The only two positive things that came out of that (in the end 4 hour long) meeting was that the district has nursing all lined up and is ready to go on that front, and we have a new district speech therapist involved now that has worked in the Total Communication Program before, is fluent in ASL and is supportive of any and all methods of communication. Therefore, we have asked for another district language evaluation, different from the previous one, that will specifically evaluate Wyatt’s comprehension and use of ASL.

All this just makes me angry. Why would a school district even hire someone to be an IEP compliance person when on a personality level they are indecisive? That in itself is contradictive to their job duties. But what really fuels the fire for me is that this ASL issue has been on table since the beginning. We didn’t suddenly overrun them with the placement request yesterday. ASL being my son’s primary mode of communication is in all of his records even as far back as when he was in the Early Steps program before age 3. The school has all the documentation in front of them and the Total Communication placement request has been provided to them well ahead of time in writing. At the bare minimum, they should have acknowledged that request and already had the appropriate decision making people attend yesterday’s meeting. Instead, it was very apparent that this topic was not supposed to be discusses, much less supported. It was very apparent that this continues to be a pass the bucket game in the hopes that the longer this gets pushed out the more likely I will eventually either walk away completely or give up and go along with whatever the school is comfortable with. It didn’t seem to matter to them that even the IEP Advocate made it clear that the handling of my son’s case has been inappropriate since the very beginning and that we have every reason to turn this into a legal matter. It makes me angry when I get the condescending “but you don’t really want him placed with the deaf and hard of hearing kids, do you?” AS if that is a jail sentence or something. Yes, I do want him placed there! His hearing might be fine but he is non-verbal, uses ASL as his primary mode of communication and therefore the appropriate and least inhibiting placement for him is that of the deaf and hard of hearing program. In his case, it is not a decision based on personal preference, it is medical necessity. Any attempt to place my son in a setting where his mode of communication is not supported is considered negligence as it is clearly documented that such placement would cause severe increased medical risk.

I have a favor to ask. My youngest son has a rare life-threatening condition called CCHS which makes him ventilator dependent during drowsiness, sleep and illness, among other medical obstacles. To try to raise awareness and hopefully increase research funding, one family of a child with CCHS has produced a movie ( "Our Curse") detailing our daily struggles and this movie has now been Oscar-nominated. PLEASE SHARE TO SPREAD AWARENESS! The more people that watch this and share it, the higher the chance of an Oscar win and therefore, the higher the chance of research money for this very rare condition!
http://mobile.nytimes.com/2015/02/02/opinion/our-curse.html?smid=nytcore-iphone-share&smprod=nytcore-iphone&_r=2&referrer

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!