Saturday, November 29, 2014

Parenting a Non-Verbal Child

On the heels of a wonderful birthday for Matthew yesterday, I should be glowing. But then again today it was back to real life, and the day ended with Matthew having a melt down and being put to bed by his dad. Real life at our house for sure.

One of the challenges of parenting a mostly non-verbal child like Matthew is that both Aaron and I have to work very hard to simply discern what our boy needs. I realize that this isn’t much different from what most parents deal with, but Matthew has been home over 2 ½ years how, and things haven’t gotten much better. In fact, in many ways they’ve gotten worse. And we can’t rely on the typical development of a healthy child in terms of how many more months it might be hard. That’s part of parenting a child with very unknown special needs.

Tonight I gave Matthew a bath and then asked his big sister to keep watch over him so I could go upstairs and get his room cleaned up and his pajamas ready for him. Under his sister’s watch, Matthew pooped in the bathtub. My husband rushed in and cleaned everything up, and then I stepped in to finish bath time. For some reason, Matthew was VERY upset when I took him out of the bath. Reflecting back, I think he was frustrated at my quick pace, as he loves to watch all the water go down the drain. Bu the doesn’t have words to tell me that, so I took him out and started drying him off, and he became inconsolably frustrated—tears, swipes towards my face, and loud wailing.

I tried to calm him down and get him in his pajamas, but he continued his crying and batting his hand toward my face . . . so I put him down, thinking he needed me space from me, but he started to cry even harder and grabbed me to pick him up.

Thank goodness for Aaron, who stepped in kindly and took Matthew. I was planning to read him one of his new birthday books, but when I reached to take him again, he shoved me away and clung to Aaron. I guess that was as clear of a message as any. At that point I was in tears—probably not doing my finest parenting, clearly—and so I let Aaron take him up and put him to bed.

Later, once I know he’s fast asleep, I’ll creep up to the attic and lay my body beside his. I’ll  cover him with kisses and smell his Matthew smell, and by morning everything will be better.

But it’s frustrating for a mama sometimes.

There’s so much we learn about people when they can tell us what they need. Clearly Matthew needed something specific tonight, even though he was tired and grumpy, but had I done a better job of being in tune to his needs I truly believe the end to his evening would have been better than it was.

I don’t want to misrepresent life with Matthew—it isn’t always this hard. But sometimes it is, and no matter how hard we try, no matter how much heart and love and sensitivity we put into our parenting, it ends in tears and shambles.

One thing I will say for my boy: by tomorrow he’ll have forgotten about tonight and be back to his normal self, and he’ll likely LIKE his mama again.  I can only hope for that, and be grateful for it when it happens.

But tonight as I sit here on the couch in a quiet living room, reflecting on this evening’s events, I also feel poignantly the extra challenge that we feel parenting a child who is not verbal—and I worry that he may never talk in a way that will express all that he’s feeling, all the while holding tenderly a hope that he will.

Friday, November 28, 2014

Happy Fourth Birthday Matthew

I've heard it said,
That people come into our lives
For a reason
Bringing something we must learn.
And we are led to those
Who help us most to grow if we let them.
And we help them in return.

Who can say if I've been changed for the better
But because I knew you.
I have been changed for good.

So much of me
Is made of what I learned from you.
You'll be with me
Like a handprint on my heart.
And now whatever way our stories end
I know you'll have rewritten mine

I woke up this morning thinking about the song “For Good” from the Broadway musical Wicked. After a long, rather complicated friendship, the two main characters, Elphaba (the wicked witch) and Glinda (the “good” witch) sing this song as they part.

These words often ring throughout my head in this season of loving and caring for Matthew.

Today Matthew is four years old. Three years ago tonight we received the call from our social worker “matching” us to this little boy, Xu Bo, in southern China. It was his first birthday. We drove home from dinner, lit a candle, and sang happy birthday to a little boy halfway across the world. At that point we weren’t even sure that we were definitely saying YES to his referral, but we all decided that no matter if he was our boy or not, we could show our love for this little person by celebrating his birthday with him. Of course he DID become our boy, and I’ve always been grateful for that night—for that act of trust and love. Because now I can tell him that we celebrated every one of his birthdays with him (except, of course, for his very first “birth” day).

As the years go on (and it’s been three of them—kind of hard to believe), that first birthday seems a long time ago. The road has been winding since then, and as you know, it hasn’t always been easy. But this morning when I woke up singing “For Good,” a line from that song brought tears to my eyes:

“And we are led to those who help us most to grow, if we let them.”

This little, amazing four-year old boy in our house has grown so much since he came home to our family. But I think we all have grown as much as he has. Matthew has taught us about letting go—about loving someone despite their challenges—about celebrating the small milestones, about not measuring each other by the “norms” or “standards” but by celebrating each person’s growth where they are. We’ve learned patience, kindness, and most of all, we’ve learned to let go and trust—in God, in our own abilities, in our community, and in Matthew.

These things have changed us for good.

Happy Birthday wonderful Matthew Oscar Xu-Bo Russell. I am grateful for the “handprint on my heart” that you’ve left, as Elphaba sings in her song, and also for the way you have re-written our story to make it this beautiful, colorful, tightly woven journey of love and grace and joy.