CCHS and AUTISM

If you’re a regular to this blog, you surely remember me constantly talking about Wyatt’s episodes - holding his breath, turning blue, passing out, and needing resuscitation. How can anyone forget that daily drama, right? (If you’re new to this blog, feel free to click on any of my older posts and you’re sure to get a glimpse into that fun experience.)

Well, over the first 4 years of his life, we tried absolutely everything to get to the bottom of these strange and life threatening daily respiratory arrest incidences, a.k.a. his “episodes”, without any success. First we were told to put him on daily sedation meds and wait it out till he’s older. That suggestion never sat right with us. How is he supposed to cope better with the world around him if he’s not with it mentally? As time went on we actually learned that any medication that causes drowsiness also caused more breath holding episodes. (That should have been our first clue to the real cause…) Then we were advised to blow in his face to have him take another breath; that made each breath holding event last even longer and caused back to back episodes. Then we were told to Ambu bag him through them so he can’t clamp down his airway so much; that also didn’t work and much to the ICU Doctor’s surprise, Wyatt managed to even pop the Ambu bag. When the medical experts ran out of suggestions, it suddenly had to be a failure in our parenting response to this presumably attention getting behavior. You can guess how well we took to that explanation… Well, we gave all those suggestions a try and nothing worked. In a strange way, running out of possible explanations was a gift because it allowed us to, reluctantly I might add, accept the situation for what it was and stop trying to fix something that couldn’t be fixed. When we were able to take a step back and look at it more from Wyatt’s perspective, we realized most episodes occurred either because he was overwhelmed or because he was frustrated not being able to communicate. Lack of communication, now that’s something we could work with. Knowing he is developmentally delayed, can’t tolerate much interaction with other people (clue #2…) and has a trach, we dove into learning and teaching him sign language. (I will explain that choice and the obstacles that came with it in another post.) It worked almost instantly. While it took him over a year to start signing back to us, he was instantly fascinated by it, started making eye contact, reading facial expressions, generally calming down quite a bit, and at 3 ½ years old finally gave us his first voluntary hug! What we didn’t know at the time was that this change in behavior that we just witnessed was nothing short of amazing. While trying to find yet another behavior specialist to help us with these decreasing yet still daily episodes, we finally found the missing puzzle piece that would make sense of all our struggles. An in-depth evaluation about a year ago revealed that Wyatt is autistic! The Autism Spectrum is great and from what we can tell so far at his young age he seems to be high functioning. And while it certainly is not a diagnosis anyone wants, it honestly came as a relief. For 4 years, day and night, we had been resuscitating him, not knowing if we’ll be able to bring him back around each and every time or what kind of brain damage each episode would cause. Wyatt having Autism suddenly explained his daily episodes and why none of the previous intervention strategies worked. It was never about him just being a brat and trying to get someone’s attention. It was simply a matter of the outside world being too overwhelming for him so when he cried, or threw a tantrum as most Doctor’s called it, it turned from an Autistic behavior into CCHS at its worst. Just to clarify, there are plenty of healthy kids who hold their breaths and pass out for behavioral reasons when they’re little. Their bodies will automatically take over breathing again when they lose consciousness. With CCHS that is not the case though, that autonomic function is malfunctioning. Every breath holding episode for Wyatt in reality is full respiratory arrest, even if we didn’t officially call it that. Getting this additional diagnosis of Autism suddenly was eye opening. Because of Autism, Wyatt gets easily overwhelmed and can’t cope with the stimuli around him, he then starts crying and CCHS complications take over to the point where he exhales all his air, loses consciousness but his brain doesn’t kick start breathing again and manual resuscitation is necessary. Finally, there was our answer. Our instincts were right all along. He wasn’t doing it on purpose and it also wasn’t something that could just be fixed. All we could do, and continue to do, is help him learn to cope with his emotions and teach him to consciously breathe through them.

CCHS is difficult to cope with but you learn to adjust over time. For us, Autism is the biggest struggle on a daily basis because it puts Wyatt at increased medical risk.

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.