I think I mentioned at the end of my last post that I literally felt like I needed to write about our experience, no matter how badly I didn't want to. I don't know how to describe it except to say that I felt like I was being driven to share--I couldn't focus on other things until I had written my thoughts down and posted them. The feeling I had was that there would be some resources that would emerge as I did so. I would be remiss if I didn't share the trail of miracles that have seen thus far.
I say "thus far" because we are no where near the end of our journey. In fact, we are still smack in the middle of it. Things are still hard at home. Instead of unmanageable constantly, it's more episodic at this point. I've been playing this analysis over and over in my head, trying to figure out whether I have gotten better at dealing with and predicting Matt's behaviors or if they have genuinely become less constant. I am not totally sure.
One thing I can say for ABSOLUTE sure is that this has felt less lonely since I have shared. We have had meals brought to us--no one knew that I was struggling to cook because Matt has thrown pots off the stove and grabbed hot food and shoved it in his mouth, or that I was struggling to eat because Matt would literally take the food off my plate or out of my hands and I would just give up. So meals have been not just one less logistic, but a sincere act of service that enables us to eat without as much stress. People have offered to take Matt on drives so that we can have a break. Friends have shown up to help me clean and to spend time with Matt. I have stood in awe as "my" amazing people have literally stepped into the middle of it with us rather than watching from the perimeter. I have been so inspired by their examples.
Ok...so this is complicated, but beautiful. When I posted last, I was submitting applications to three or four different places and within 24 hours of posting, we had been rejected by all of them. HOWEVER, a friend of mine wrote me after reading my post and told me that her Dad was Chairman of the Board for Albertina Kerr (one of the places we applied) and she connected us. During our conversation, he was able to give me the "lay of the land" in this industry, describing the separation in services between psychiatric/mental health services and services for kids with developmental disabilities. (Mind you, the two very often overlap, but there is literally no one in the states of WA or OR that fills in that space. It has to do with funding--regular health insurance covers the mental health services while state insurance covers services under the developmental disabilities category). What this info did was reroute me completely--I was literally barking up the wrong tree.
Shortly after being rejected (strong word, but I can't think of another) by HMHI, I ended up with a list of other places to check out. There are two places that were NOT residential schools (those need to be recommended and funded through the school district and are not considered until every option has been tried) that offer in-patient treatment for children with developmental disabilities experiencing psychiatric issues that also have behavior problems. Matt, I was told by each one, fit their profile. However, the process for applying is extensive and LONG....
I managed to get the applications for each submitted within days and we are currently still in a holding pattern. Through the process, I managed to connect with some amazing people at each location that I feel have my back--they are trying to get Matt's applications processed quickly and keeping me posted. My next giant concern was this--how the beef could we get him there? These places are across the country and we cannot fly with Matt. There is NO WAY. And you can't board a 130 lb 5'7" human onto a plane sedated--they might frown upon that a little. Just as we wrapped up the application process, an incredibly generous and fairly new friend of ours was talking to us about Matt and this plight...and he offered to fly us out on his private jet. WHAT?!? Literally every obstacle, at that point, had been removed as far as we are concerned. We might have instantly burst into tears when he made that offer.
The other thing that happened when I posted is a bit more complicated to explain, but absolutely blew me away. I have a friend with a son who has special needs also. She has learned he has a genetic condition called ADNP and has been a research advocate, fundraiser, and community builder in that space for years. I've watched her educate on capital hill and raise money to learn about the possibility of things like gene-therapy to treat his condition. About a month before she saw my post which mentioned Matt's diagnosis of Phelan-McDermid syndrome, she had learned that ADNP, Angelmans and PMS share a genetic pathway, meaning that some of the treatments and research that applies to one could possibly apply to all. Thus, she has been diving in to learning about Phelan-McDermid and through that, connected with several experts and researchers. She connected me with the president of a foundation called Cure Shank (Matt's mutation is on the Shank 3 chromosome). She has a son with PMS who is in his 20's and has been researching the heck out of this, trying to better understand trends and patterns, what treatments do and don't work, etc. She was able to provide me with research about what medications may and may not work. Matt was on two that are known to have adverse effects on kids experiencing neuro-psychiatric issues in their teen years. WHAT?!? I also learned that what we were seeing may present like bi-polar disorder, but may have a different explanation. Most of all, the research validated the fact that this (Matt's crazy) is pretty common during the teen years in kiddos who have a mutation on the Shank 3 gene. That's helpful in that I know it is a known...but not helpful because it means we may have a few more years of this. Managing symptoms is our best bet.
About 2 weeks into this whole process, I had this thought that I needed to reconnect with the developmental pediatrician that had encouraged us to do genetic testing in the first place. She is BRILLIANT and the only reason I had yet to reach out to her was financial--she doesn't bill insurance so we pay cash. But I couldn't shake the feeling that I needed to talk to her. I reached out and within a week, had an appointment. During our conversation, I learned that she had JUST connected (literally weeks before) with a person who does research around "normal" variants in genes and how the absorption of certain things (like folic acid) can be more difficult because of those variants. It led us to a conversation about expression of proteins on genes that have a mutation and how to increase the expression of those proteins through by giving kids more of the nutrients they are struggling to absorb. Not sure if that makes ANY sense...but basically what this means is that they are figuring out ways to take a sleeping part of a gene and tickle awake the part that needs to be expressed...not fully, but improving it in any small way could prove helpful in the reduction of symptoms related to that mutation. Gene therapy targets this more directly.
Not only do we have new (totally harmless) things to try, but she also told me about one more in-patient treatment location on THIS SIDE of the country--Aurora Behavioral Health in AZ. The minute she told me about them, I got this feeling of excitement at the thought of him potentially going somewhere I could actually visit! My sister lives there! She could visit my Matt and give him all the hugs! And I could go and stay with her and see him instead of feeling like he was a world away. They called me twice yesterday and I know his application is in process--I got it submitted within 24 hours or learning about them. It was one of those moments where I just KNEW this is where I was being led. Who knows if it will play out, but I just had this feeling when we learned about them that this was another stepping stone in the right direction.
Speaking of stepping stones, I have had so many of those little moments...moments when I see the fingerprint of the Divine guiding this path. About three months ago, we had a family fast for Matt and during it, I had this feeling this was going to be a longer trial, but that it was absolutely in God's hands--that we would recognize the process as it unfolded piece by piece. I reflect on that feeling on the days when I am discouraged because I DO feel like this is in God's hands. I could not have orchestrated or predicted 90% of the productive things that have happened thus far. It is so hard to not have answers yet, but I am learning in therapy that I need to stop running the emotional marathon of trying to figure out how the next part will play out before we even get there because i will arrive at the "next part" already depleted from the anxiety anticipating it. I'm trying to be more present-focused, controlling what I can in the moment. I still wish I could see what's next, but I suppose that might make me focus on "next" vs. recognizing the miracles in the middle. That's where the growth is...learning to look at life in a way that allows you to see the miracles.
