update - living life again despite CCHS

As mentioned in my last update, Wyatt has successfully transitioned to a self-contained Total Communication Pre-K Exceptional Student Education classroom (ha, now that's a mouth full). It's been right about a year now and the biggest change I have to mention here applies to our whole family. Yes, Wyatt has made huge progress and I'll list his progress in another post. But what I really want to point out here is that life has gone back to normal for us! I want other families in similar situations to know that it does get easier with time!
To be honest, I myself always hated it when people told me "it'll get easier" because it just wasn't happening fast enough in my book. But it does get easier, just maybe not in the way you expect. When I say "easier", please don't misunderstand. It was a battle to get to where we are now and we still have quite a few battles ahead of us I'm sure. But the path we paved in the last 4 years is paying off now and it is to some degree progressing on its own. We started with a huge learning curve and having to fight the good fight completely on our own. I mean what options do you have when you're dealing with a disorder 99% of doctors haven't even heard of. It was exhausting, frustrating, down-right depressing at times, and we often couldn't see the light at the end of the tunnel. But we fought our way through it and we slowly but surely build a good "Team Wyatt". This sounds so corny but it's true. We hand picked his doctors and were not afraid to say no to one and find another if that person didn't fit our life and medical approach. Having that confidence as a parent to do so does take practice though. But once you find it, the medical side gets easier to deal with. We also learned to follow Wyatt's lead when it came to therapy. Would we have liked to start therapy since he was born and seen faster progress? Of course and we tried but he wasn't having any of it. We learned to accept him for who he is in this moment and trust that he'll do things in his own time. That is another way that life became easier. We stopped second guessing ourselves and comparing Wyatt to what a typical child his age would do. Instead of pushing him to do things he wasn't ready for, we learned to trust our own instincts and ironically, progression actually started happening faster. Now he is receptive to therapy and is making huge progress. Once these two pieces were established, our self-confidence and trust that progress will happen on Wyatt's terms, our whole family dynamics became balanced again. We were able to step out of the constant proactive medical mode into enjoying life as it happens right this moment. Medically of course, we always have to think and act proactively but we learned to stop worrying so much about what might go wrong next. He's far more stable now than ever before and we can, with accommodations and some planning, go on adventures and do family activities. Thanks to Wyatt being in school now, also something we never thought he'd be medically stable enough to do, all other family members can pursue their own hobbies and goals again. There will always be sudden medical needs that will throw a curve ball but I'm here to tell you, even with this kids who went into respiratory arrest 20+times a day as a baby and to this day still scares us like that a few times a week, life still goes on. Having a child with CCHS is not a prison sentence. Each case is different but life's possibilities are endless! Even a day at the beach with a trached child is possible!

"Just a cold" with CCHS

Just in case I forgot how quickly things can change with CCHS, there's sure to be a reality check hiding around the next corner. This is what having just a cold looked like a week ago:

In the morning he was still running around playing on the play ground (and breathing!!!). Everything seemed fine. We went about our day, had lunch, he took his nap, and played again after his nap. Suddenly one minute to the next, he climbed on my chair and while watching TV suddenly got sweaty, dark circles under his eyes and stopped breathing altogether. Keep in mind, thanks to CCHS, he doesn't feel any of this happening. He doesn't get shortness of breath and therefore, can't tell me he's crashing. On the vent we go and that's where we stayed the rest of the day! The actual cold symptoms didn't even show up until an hour after this incident... Always have to be ready to jump in and manually provide the things that we all take for granted, like breathing!

Updates, updates, updates

Good news, I’m active on Facebook again and I’m working on providing the requested updates on this blog about Wyatt’s progress. So much has happened, it’s hard to know where to start.

The issues of the IEP… All my battles with the school district paid off. With the help of The IEP Advocate, we were able to place Wyatt in the only Total Communication classroom in this county. The team at that school is amazing, and that’s a huge compliment coming from a Mom who has become a Homeschool proponent. Simply having Wyatt in an environment where other people can understand him, teachers and students alike, has made such a difference. Everyone signs, the teacher, the teachers aide, the interpreter, the students… a whole new world opened up for him. It was worth every minute of the months long battle to have him placed in that one of a kind classroom. His use of ASL signs improved almost instantly. He still modifies a lot of the signs because of his fine motor issues and we’re not having complete back and forth conversations yet but we’re moving in the right direction and he can express his wants and needs. Best of all, we don’t have to go it alone anymore.

With the start of school for Wyatt in the Spring of 2015, I also felt like I was getting my own life back. Wyatt has an amazing one on one nurse at school who stays with him every minute of the day. She took to him right away, is not scared of his breath holding episodes (that was the deciding factor whether school is an option for him), she can read his cues exceptionally well to proactively approach his behavior, and she doesn’t let him pull the sympathy card which is a top priority in my book. I want him to be challenged and I want him to exceed expectations. What most people don’t understand is that private medical insurance doesn’t pay for private duty nursing. Parents of special needs kids usually have to be the sole caretakers taking on the roles of nurse, therapist, teacher, specialist on their child’s condition, etc. So this has really been the first time someone outside the family has truly taken over care of Wyatt for an extended period of time. Strangely enough though, I wasn’t nervous on his first day of school, I was relieved. We met with his nurse at our house prior to starting school and she provided an instant calm. It’s hard to explain but I just knew, he’ll be fine.

special needs struggles posted on social media

Recently the question was raised how to raise a special needs child without limiting their dreams and possibilities, and whether the daily struggles of that parent and child should be discussed in social media. The opinions varied slightly but the common theme was that one is to stay positive and offer the child every opportunity and that any mention of the struggles or medical setbacks should be posted with caution, preferably only in closed groups but not on private accounts, in order to guard against possible negative future consequences of such posts to the parent or child since all posts are searchable by anyone at any time.

While generally speaking I would agree with that consensus, I also feel like it’s not as black and white of an issue. There is a lot grey area here worth mentioning. Again, I can only speak from my own experience and everyone reading this has to come to their own conclusions.

What to post on social media, or in this blog for that matter, has always been a question of urgency. In the early days when Wyatt was first born, when every day was an emergency and I had no idea what I was up against, life was very isolating and my private and support group Facebook accounts, as well as this blog were my place to vent and to keep family and friends in the loop without having to call everyone individually with medical updates. To be perfectly honest, this blog was the only thing that kept me sane. As time went on, our life went from daily despair to the new normal we know now and therefore the monthly blog posts transformed from pure talk therapy into the occasional update. And now as I am writing this I just realized I haven't even posted a blog update in over a year. So I think what it comes down to is that everyone copes with such a dramatic life changing event differently and at a different rate, and how they cope also depends on whether they have a support system close by. I would never fault someone for getting wrapped up in the medical world so much that they may not even realize their posts and comments only evolve around that world. I did that myself for a long time. When I was stuck in that mode, for me it was never about commenting on Wyatt’s life limitations or what he might be able to do in the future. We always treated him just like our other boys and still expected no less of him. My updates had more to do with my own anxiety with this diagnosis and whether I was doing everything possible and being everything he needed me to be. It took me almost 3 years to go through the process of diving into research and following up with every doctor for me to accept things for what they are, most importantly to have the confidence to trust my own gut instead of just doctors, and to move on with life independent of the labeled diagnosis. I also had to learn that I can only function on an "either/or" approach. Either I am involved in the research of CCHS and I dive in full force driving myself crazy and isolating myself from the world, or I keep my distance and am then able to enjoy life. (Hence my lack of involvement in anything CCHS related and even with the online support group. No offense to anyone.) There is no middle ground for me to be able to function on a day to day basis. Some people can juggle this situation better, even dive into the mode of supporting research and fundraising yet still continue normal life. I personally can't do that. So I guess what I’m saying is that maybe when someone is going through a similar situation as mine and appears to be only sharing seemingly negative updates or only posts related to that situation, I would like for the readers to consider that it may not have anything to do with that person’s true beliefs for their child’s future. It is equally as plausible that they are simply overwhelmed and might not know how to get out of the medical status mode.

As far as my blog posts and comments in the early - every day is an emergency - days, I don’t regret any of them. There is no shame in trying to cope with the situation at hand and showing raw emotion. I am also not afraid of Wyatt one day reading about my personal struggles alongside his own. We all depend on each other to get through life’s bumps in the road and we all cope differently at different times. And that’s ok. If anything, I am proud of myself for being honest and outspoken about issues that a lot of people are afraid to bring up publically. It is my sincere hope that my honest, and admittedly sometimes blunt, account of our life will help someone else get over their bumps in the road.

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).