About 2.5 hours after this whole thing drew to a close, Matthew woke up. He was wide awake. I went into his room, after several minutes of praying he would go back to sleep, and tried to read with him, offer him drinks of water, and encourage him to go back to sleep. He would have none of it and literally shoved and scratched his way past me to get out of his tent and escape (loudly) to freedom. Several hours later, we went on a drive and it was foggy and dark. I just drove because when we drive, Matthew is content. We were listening to soothing church music and hardly made a sound. I looked back and his content little face and blurry eyes and prayed that, when we got home, he would somehow go back to sleep. No luck.
Maybe I share that to explain why, in my sleep-deprived and somewhat irrational state, I might be a bit more emotional than normal. Maybe I share that because it is a small dose of our currently reality. And, candidly, our current reality kind of bites.
I wrote recently about our trip to CA over Thanksgiving and the flight o' torture we endured on the way back. I attempted to describe some of the animal-like sounds coming from our child who we hardly recognized and the almost-frightening, inconsolable way that he freaked out during that flight. Unfortunately, that proved to actually be a bit of a turning point in our journey--hopefully just a detour, but a turn nonetheless--and Matthew has been screaming like that, almost non-stop, ever since. We have seen a different child since that flight and we hardly recognize the sweet, amazing, connected kiddo that we felt like we had before boarding. Matthew has, instead, been aggressive, anxious, intense, easily frustrated, less verbally expressive, louder, and non-compliant. He seems to target me the most and, honestly, it's more than physically painful to go through.
I don't want anyone to know Matthew like this--I want them to remember the boy that I know he is. But I want to describe this phase in enough detail that I won't forget it. I want to remember what we are enduring right now so that I don't take our easier phases or an upward trend for granted. Please, do not feel sorry for us--I feel like, lately, we have had a lot of people say how bad they feel for us, how hard it seems like our life must be, how sad it is to watch. I HATE THAT. Do not feel sorry for us. Like everyone, we are struggling to navigate a difficult chapter and are SO blessed to be surrounded by people who love and support us through the journey. Oh, how I wish I could support people the way that people support me! But we are not depressed about our life...we are just trying to figure it out.
My hands are cut--they have scars on them from where Matthew has scratched me and digs his nails into my hands and arms. They are starting to heal as I'm figuring out how to "dodge" the scratching (I tried ignoring the behavior and not reacting, but let's just say that produced the majority of the deep cuts), but I bleed every couple of days from a scab he scratches off or a new cut he somehow sneaks in. He is pulling my hair quite a bit. He scratched me right down the front of my face the other day. He kicks, hits, and otherwise tries to communicate through aggression lately. He has, soooo sadly, started to occasionally hurt an innocent passer-by--grabbing a girls locks in the hallway at church or school. Poor Adi is lucky to have much hair left as she does seem to be another favorite target. You should see our little fiesty ninja attempt to dodge him with a little aggressive display of her own. Not something I'm proud of, but I have no fear that little girl can hold her own.
The screaming--remember how in "Dumb and Dumber," Jim Carey asks at one point, "want to hear the most annoying sound in the world?" Well, I think Matthew mastered it. He has found a decibal that almost makes you cringe and it has started to take a toll on our kids--they often will end up in tears, plugging their ears, running away from him begging him to stop. We also beg, but have yet to figure out how exactly to make it stop.
Liam and Adi, bless their patient souls, have probably started to feel the emotional toll this is taking on us. We try so hard to make sure they each feel like they are a priority so that Matthew's challenges don't somehow overshadow them or require more of our attention than is appropriate. But they have had moments where I've needed their rescue--Adi holds Matthew's hand in the backseat and that display of tenderness reminds me that he still has it in him. Liam will volunteer to "take Matthew" when he senses I'm going to lose it and plays with him in the sensory gym to give me five minutes to breathe. But they ache too.
We have known something is not right, so I have made an appointment with an ENT to check his ears to see if something ruptured or exploded or...well, anything! I have an appointment with a geneticist to see if something else might be going on that we aren't aware of. I am making an appointment with a neurologist to see if perhaps he is having seizures. I have an appointment with an orthopedic surgeon because, in the midst of all of this, his subluxing kneecap has started to cause him pain and limit his activity. And we just had an appointment with a psychiatrist to see if we needed to adjust his meds.
We did adjust Matthew's meds, but they seem to have turned him into a zombie--he has been falling asleep at the dinner table, walking around in a comatose state with eyes at half-mast and drooling. It makes me cry. I am the first to say that this scares me--drugging my child is not something I like to do, but I feel like the alternative is scary too. The doctor put him on something specifically for kids with autism between the ages of 6-16 who are showing aggressive or anxious behaviors. Sounds like a dream--not quite sure we have it right yet.
Now, fast forward to today. My sleep-deprived self got a hug from a friend in the hallway at church who just sensed, I think, the depth of my internal struggle. Pretty sure I didn't really let on just how much of a toll this was taking on me, but she somehow knew. She gave me a long, hard hug and I just lost it. Tears with snot. Unleashed the emotional beast. And I haven't stopped crying since.
I realized what sucks about this whole deal--I feel like we are running as hard as we possibly can, searching for answers and explanations, and we probably won't ever "arrive." And I think that sometimes we just increase the speed at which we are running to mask sadness that we aren't sure that we will ever find what we seek. It almost makes us feel better to be doing SOMETHING. But the truth is, perhaps we are doing the wrong thing. Todd and I both felt so strongly today at the same point in the day but in completely different places, that we need to be asking God what to do for our son....and we keep asking each other, our friends, ourselves. We are working our tails off at taking stabs in the dark.
So I came home today and prayed my guts out. I realized that I needed a little Divine guidance to figure out what we are supposed to do to re-discover our Matthew. And what I felt I desperately need the most is a glimpse if my sweet little boys soul--who he REALLY is and has the potential to become. He is mine forever and I believe he picked Todd and me because he knew we would see him for who he really is. But my vision is so clouded by the screeching and scratching right now. I have to get back to the point where I can see even a glimpse of who my Matthew is. He is not defined by autism, by his cognitive limitations or by his behaviors. His spirit is whole and I want to see that. I believe that God can give us those glimpses if we are looking for them. I have had those moments before--where I look into his eyes and just feel like he is 100% there, with it, knowing, understanding.
I used to long for the day when Matthew would talk or when Matthew would this or that. I've realized that none of those things really matter. Matthew will become exactly who God intends him to be. Todd and I are along for the ride, to learn, grown and hopefully change because of this amazing soul. But this part of our journey is perhaps the refining phase. We will keep running (because that's what we parents of kids who have special needs do), but I'm committing to be more purposeful and to try to do it with a heart more full of faith. I also need to remember that I'm not doing this for answers to satisfy me. I'm doing this to help Matthew become the best person he can. It changes the mission a little and, hopefully, will afford me the glimpses I need of my boy so that I can "endure well" rough days like....well, the past 65. :-)