I started therapy recently--it's hard for me. I don't think I am good at it.
Yesterday during our session, she said something about things feeling out of control and swirling around...and I heard "swirly" which conjured up images of having your head shoved in a toilet. by a bully. I realized that is kind of how I feel--like I'm caught in an emotional swirly. Also, poop themes seem to speak to me, especially when I am talking about Matt.
I'm sitting locked in my room while Matt is banging on the door with a babysitter chasing him around the house, both of them sweaty (I just took him potty for her and they are literally sweating from running around). It is snowing outside which is literally like a prison sentence to Matt right now as we are navigating an extremely difficult phase with him. School is cancelled. The only things we can do with Matt to keep him happy are taken off the table--drives and walks. Right now, he requires complete 1:1 attention or his behaviors become completely unmanageable. He has zero independent leisure skills right now and is struggling to attend to the activities he used to like doing. He literally runs around like a caged animal until we get into the car (where he kicks, pulls your hair, bangs on the window, throws shoes at you, or chews on his collar) or go on a walk during which he is angelic and loving.
This morning, Matt BURST out of his sleeping tent with the energy of a caged animal, throwing his stinky, poopy-pajamed body at me for a massive hug while he laughed loudly. You cannot help but LOVE the gigantic smile on that boy's face lately and the intensity of the hugs he gives. He literally hugs me for a solid 2+ minutes every morning. After getting him in the bath, I ran to load some laundry and he got out and slipped, sprawling on the floor, so Adi is yelling at me. I wash him, towel him off, apply deodorant, and accidentally lose my grip on him and he runs into Adi's room and body-slams her sleepy self with his nakedness which totally freaks her out--he's a man, after all. No little kid body parts on this dude. So she's yelling, he's laughing maniacally, and that's how our day starts....and that's the beginning of the emotional ramp up.
Once downstairs, he is throwing chairs, metal waterbottles, shoving dirty rags in his mouth, throwing anything he can get his hands on across the room. I need to make breakfast, so Adi and Liam take him upstairs where he pokes Liam in the eye with a book, bit him seven times over the course of the morning and finally Liam locks himself and Matt into Matt's room where I can hear him banging loudly on the door. Liam wrestles with him and tries to get some energy out, but instead, things escalate even more.
During this, Matt's psychiatrist calls me. I have been desperate to talk to him as Matt has new meds on board as we are trying to navigate this new level of intensity he seems to be experiencing (raging hormones in special needs kid are not for the faint of heart and I'm sure exacerbate whatever is happening). During the course of our call he asks me, "what's next?" I almost yelled at him....what's next? YOU TELL ME! I am at a total loss as to what we should do next. Luckily, he was being rhetorical and we started to talk about things we need to consider.
Todd and I have started having the conversations that no parent ever wants to have about the health of our family overall and what is best for EVERYONE and that includes the possibility of finding care for Matt outside of our home. How can I even say that out loud? How can I consider the possibility of someone else getting the morning hugs from him? How can I fathom the idea of another person getting up with him in the middle of the night? They won't know to let him do a giant stretch before you put his weighted blanket across his stomach, pull the blanket up and kiss his face with a super long, hard cheek-kiss in order to get him to fall back to sleep. How can I possibly do this? I feel like someone is taking a part of my insides and ripping them out of me. It makes me physically ill.
At the same time, how can we sustain this? We all benefit from Matt's presence and the things we are learning as we practice patience, care for his every need, and learn flexibility. He is a gift to our family...but right now, things are so disruptive that their emotional needs are not being met. I have to consider the fact that Liam only has two more years in our home--how can we have conversations about all the important things we need to discuss during this time if I can't even talk to another human being without Matt screaming in my face, eating something he shouldn't, or throwing an item at my head? How can I help Adi with her homework or take her and her friends to do something if I can't find care or leave Matt alone long enough to help them find pens so they can do an art project? The wrestle is so painful and I am really struggling to understand God's will in all of this. This is the invisible part of our very visible struggle.
Today the doctor suggested I call a place called Albertina Kerr--they have subacute in-patient crisis care, but he does not think they will accept Matt because of his behaviors. Regardless, it scares me to death. I called and left them a VM during which I fully lost my composure and just cried...to the machine (not even a human). We are also exploring something called the CAT (comprehensive assessment and treatment) program at the Huntsman Mental Health Institute in SLC, UT. They have a team that is currently assessing whether they would be a good fit and could anticipate positive outcomes from treatment there based on the info I have provided. If they do, he will go there for 6-8 weeks of in-patient care. It feels like a very positive place and I'm excited about that possibility, but it costs a FORTUNE and will likely not be covered by insurance. I'm working on that a little, but we don't even know if he will get in. Then there are schools with residential care...but exactly ZERO of them are here--most are across the country.
I have been completely overwhelmed by the love that has been shown to our family during this very visible trial. I weep in church as I watch people scramble to help us, flounder to know what to do, offer their time and energy to try to ease our burden. I am BLOWN AWAY and sustained by that love--it's God's earthly angels. It is how He is answering my pleading prayers right now.
I literally do not know where we are going to land. Why do I share all of this while we are in the middle of the journey? Therapy. And because that's just what I do when i feel this tug in my heart that its time to share. I do not want people to feel sorry for us; however, I do feel like it is important to share our stuff with each other...and I can't do it in person because I just cry too much. But its a reminder to me that when someone is going through a visible trial, there are so many more invisible struggles I am not aware of. I'm grateful--we are grateful-- for the people who have stepped in to the invisible (and ugliest) parts of this and just loved us. We all need to do that more.
