I read the term "extreme parenting" recently and realized that feels like the perfect way to describe my role right now--parenting in and of itself is rough and taxes even the toughest of men and women, tests us in ways we never thought possible, and rewards us so deeply we cannot explain it. Parenting Matt feels like parenting on steroids.
Because of this, I think it is fair to say that I don't always share the details of what is going with everyone. I tend to give a rather surface answer to typical questions about how I'm doing because I don't know how to explain the struggle. It has recently gotten to a whole new level and we are facing decisions that no parent should have to face, and so I can't really just share stuff with anyone. This is the heart stuff....this is the stuff that makes you feel like you might break into a thousand pieces.
This is going to be a post that I worry will be too vulnerable and hesitated to put here, but realized that part of what helps me to see the lessons in the hard experiences is to know that they might help someone else. So that's the hope.
The past several months have been a roller-coaster of emotion and we've been trying to figure out how we are going to function in our current reality with Matt. His behaviors have been so intense, his regression so profound, and our ability to cope seems to be fading. We ruled out some of the potential physical causes (he does not have a brain tumor), but were literally struggling to keep our heads above water every minute of every day.
Now, every family has their hard phases, so I know that you will relate to this...but because I study and breath and love and can teach communication, it was very hard for me to watch myself react badly to all of this and struggle to talk about it. My sister kept reaching out to me, but I couldn't reach back. My parents are on a mission and I just couldn't find the energy to go into all the details (or would cry if I tried). I stopped going to social things (COVID and a busy family makes the excuses pretty easy). I found that every ounce of patience I possess was sucked up by Matt, leaving none for my other children or Todd. My ability to engage with the other members of my family was so diminished and then I would finally have a moment where my mind could wrap around their "stuff" and I would panic when I realized they had some pretty big needs that I was not able to meet because I was so depleted. And then I would feel even more exhausted.
After several months of this, doctors started to see the toll it was taking on me and on our family. They could see things I couldn't, including the fact that my other kids were suffering. They started to recommend that we consider some out-of-home respite or even a residential facility for Matt, both in the short term and in the long term. Mind you, Todd was saying the same things, but I couldn't hear him. I couldn't take it from him. My perspective has always been that having Matt in our family will make all of us better humans. I still believe that--I see that. It is true. However, there comes a point where you lose the ability to find a healthy balance and my other two kiddos were suffering...their needs were not being met.
This was a devastating blow to me. I felt like a failure as a mother and I clung to Matt even tighter. I tried to do everything that I could to protect the rest of our family from him so that no one would make me put him in a home. I couldn't imagine someone else putting my baby to bed, seeing his gigantic smile when he woke up...I couldn't fathom giving him up, which is what it felt like. So I put myself between him and everyone else and tried to put on a happy face so this wouldn't be real. I found that it wasn't possible--I couldn't do it.
In the middle of this phase, we had an experience that put Todd and I profoundly at odds--it was the straw that broke the camels back for him (he had so many other things that were causing him stress), but it had to do with my family and therefore I ended up on "the other side" in all of it. He had a difficult time talking to me and when he crawled into his hole, I crawled deeper into mine. I tried to protect him more from Matt because he was snappier with him. When I would get frustrated at how quickly he would get frustrated, it made the chasm between us deeper. When I would try to put on a happy face and power through with positivity, it depleted me even further. What I realized is that when we are experiencing loneliness and emotional isolation, we give ourselves permission to act in a way that we wouldn't normally permit ourselves to act and to think thoughts that we wouldn't typically entertain. I found myself writing stories where I was the victim in our relationship and in our family. I started to allow my mind to think through scenarios where we didn't have Matt or compare ourselves to other families who appeared to have it so much easier. When you have a child with special needs, that comparison is one of the most dangerous because it further isolates you in other relationships. You start to believe that no one can understand your life in addition to resenting your own circumstances...and everyone else who appears to have it "so easy." I started to even do that with Todd--I started to compare my life and responsibilities to his, feeling like I bore the brunt of the emotional burden as it relates to Matt, so I started to resent him and take mental notes of all of the times I took the lion's share.
Now, you have to know I possess a super-power. I know this isn't something that everyone can do, so please know that as I say this, I know it is a gift (I consider it a spiritual gift). I was able to step out of all of this in a way and see what I was doing. I decided I needed to work on thinking different thoughts about Todd to start with and I literally stopped allowing myself to give ANY attention or breathe any life into a thought with even an ounce of negativity. I willed myself to see the best in that man and decided to crawl into the hole he was hiding in and try to see things from his perspective. And then he started to climb out...and I was able to express to him that I felt like I was falling off a cliff and that he was standing there, watching, and was going to witness me going "ker-splat" rather than reaching out to catch me. I told him I needed him to catch me. At that point, everything with us started to shift.
You do not have to think the same thoughts as someone or be totally on the same page in order to have unity in your relationship. As Todd and I started to talk more about everything going on with Matt, I no longer resented the fact that he had been making the same suggestions as the doctors for months now. He was able to explain to me why he thought it might be best for Matt and our other kids without me immediately labeling him as "giving up" on Matt. We were able to have conversations about our future where I didn't bawl my eyes out the entire time. They have led us to a better place together.
As things started to shift, two of Matt's doctors had an idea and tested him for some infections. There is something called PANS where you can have an infection in the body that causes psychiatric symptoms. Matt did not have the expected strep infection (which was almost a disappointing because you can treat infection), but he DID have a staff infection in his wee little bum. We immediately started him on antibiotics and his behavior was profoundly better within 24 hours. After he finished the round of meds, he tanked--immediately stopped sleeping and went back to all of his intense, horrible, aggressive, HARD stuff. So we started him on antibiotics again....and this time, as he finished the round, things stayed pretty steady...and they have continued to be ok. Not awesome...but OK.
We no longer feel like we are barely able to keep our heads above water. Rather, I feel like we are starting to think rationally about the future. This experience taught me that it can, and likely will, get desperate at times. And it opened my eyes to stories where other people have put their children in a home...or not. I've actually learned a little bit about the negative psychological impact it can have on a child when you keep them in your home rather than allowing them the social interaction and activity/therapy a group home would provide. We have not made any decisions yet, but we are starting to talk, research, learn, and think about what is next. In the immediate future, we are still looking for more help with Matt on the weekends, but instead of feeling like we are going to murder each other every weekend, we are tag-teaming better as a family.
If you are a parent who feels buried alive by your role, please know you are not alone. Please allow yourself to see your victories. If you need to crawl into a hole for a few minutes, invite a few friends to visit you there--let people in. The hypocrisy of this advice is not lost on me, BTW. Todd would read this and laugh that I'm saying it. But I am TRYING. I am making effort. Writing this out and posting it is my attempt to invite a few friends into the hole I am working to vacate.
Our experience yesterday (see yesterday's post) yielded some tender fruits. We all have loved on Matt a little harder and felt some really big feelings as a result. It served as a beautiful reminder of how much we love our crazy, chaotic, messy family...and wouldn't trade all of this hard stuff for the world.
