Tuesday, February 10, 2015

Finally a little time

As I write this, I’m sitting in the therapy office where Matthew gets speech therapy and occupational therapy each week. Since his therapists are enjoying working one-on-one with him right now (without me in the room), I have the privilege of sitting in the waiting room for over an hour on Tuesdays, giving me plenty of time to read, email or catch up on writing. I’ve taken to bringing a cup of tea with me when I sit. It’s funny how I’ve learned to snatch the quiet moments when I can. You might not think a children’s therapy waiting room could be soothing, but trust me—in my life, it’s a huge gift.
Our boy is getting so tall these days.

I’ve been looking for some time to update the blog—the days are really full right now trying to keep up with the general tasks of living coupled with the extra tasks required to help support Matthew win his development. I’m still working on what this blog is—part journal, part chronicle, part place to record and share stories of parenting Matthew.

But once in a while I feel the need for a basic update, which at this time is long overdue.

We’ve had some setbacks in the past several weeks, but we’ve also jumped ahead several steps, which is exciting to report. The holidays were hard in many ways—a medication change along with the loss of routine turned our rather well-adjusted kid into a nightmare-of-a-boy for a few weeks. We’ve moved through that, gotten Matthew’s meds back on track, found our rhythm again, and things seem to be moving forward nicely.

Love all Matthew's newfound smiles
There are also increased behavioral challenges that are zapping us of energy, but it’s funny—so much of Matthew’s current behavioral stuff feels frighteningly familiar to what we dealt with when Maya and Sam were babies. Defiance, challenging directions, pushing boundaries. I keep telling myself, “this is Matthew’s job—to figure out where the boundaries and limits are.” The thing that makes everything one notch more intense is that we’re parenting Matthew without his ability to talk to us. So trying to find the motivation in his behavior sis hard, as is finding a currency that works well for consequences (no T.V., time outs or time ins, taking away toys, etc.). Things have gotten challenging enough that we finally turned to a psychologist who specializes in kids on the autism spectrum to offer some strategies and suggestions to us. We met with her last week and have scheduled her for a “home visit” so she can come meet Matthew and see him interact in his home environment. Then at a follow up session, she’ll help us make a behavioral plan with some adjustments to our current routines and some consequences for behaviors. We are both excited about adding a new person to our “team” who can help give us some better strategies for supporting Matthew’s good behavior.

So those are the hard things. But there are so many good things to report too.

It's SO good to be outside together.
First of all, I feel like Matthew’s receptive language has reached a new level. Even though he doesn’t have very many skills in communicating with us using words, he’s comprehending SO much of what we say, reflected in his ability to do what’s been asked of him, to complete a task, to respond in some way. He’s also putting two and three word signs together to communicate things that are more and more complex. One of the challenges of a non-verbal kid is not being able to know what he’s thinking or what he wants. Words tell us so much about a kiddo. Aaron and I are both getting really good at inferring what Matthew needs, but sometimes we can’t figure him out. So the more things he can sign and express to us, the smoother our daily routine and life seems to be.

Matthew has also become increasingly more social. For a kid who seemed to live in his own bubble for the first two years of being home with us, it’s exciting to see him awaken to the world around him. He continually seeks out members of his immediate family—asking them to play with him, getting their attention. As I’m sure you can imagine, this is also somewhat exhausting, especially if I’m the only parent at home with three kids who all need parts of me. But we try to rejoice in the small miracles even if they wear us out sometimes. We realize how important these steps forward can be.

Matthew is quite the hiker!
I don’t exactly know how to say this, but I feel in many ways like the shock of having a child with developmental delays and special needs has kind of worn off. It’s no longer keeping me awake at night as I panic about the future, about all the questions with no answers, about all the extra energy expend loving this little man in our family. There are still challenges, yes, and will probably always be. Some of the behavioral issues take a lot of energy to work through, and I would wish those away in a heartbeat. But the only way to have Matthew is to have the boy and the challenges. And I love this kiddo with all my heart, so I’ll take the whole Matthew.

Watching the SuperBowl together with cousin Hayden.
Maybe one day I’ll be able to tell you Matthew is speaking in full sentences or has friends who want to play with him or something momentous like that. But for now I’ll settle for the small miracles—the baby steps forward—that make me grateful life keeps moving on. I’m letting go of my fear and embracing this beautiful, complicated, treasured life that we are living together.