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.

Thursday, October 23, 2014

In the middle of the story

I’ve been reading some China forums lately with posts from families who have kids with developmental delays. It’s been a discouraging week and a half at our house since we tried a very low dose of Ritalin for Matthew and had to deal with some very unpleasant side effects. It seems that as it stimulated Matthew’s brain, it also enhanced some of his neurological challenges (like head hitting and tics), which were frustrating and hard. And he was generally fussy and unhappy, even to the point of tantrums, undoing the balance and rhythm at our house which we work so hard to create.

So it felt like soothing balm to this mama today to read from some other families who parent kids with special needs. It turns out that even during the season when parents were bringing home non-special needs kids from China (mostly 2010 and before), many of the children who came home had developmental delays because of neglectful orphanage environments.

I don’t know why, but for some reason reading these posts helped me re-frame our family situation. There are still moments (sometimes more like hours) when I still carry around a lot of anger and grief about the fact that Matthew has as many challenges as he does. I’m haunted, a bit, by the naive expectations I had about bringing home a special needs child from China. 

But at the same time, I wasn’t lying to myself with the expectation that our kid would come home and catch up—this is what so many other families had experienced. I talked with many China adoption parents before our adoption (in part thanks to our adoption agency who willingly referred me to other adoptive parents) and the stories I heard, without fail, were ones of success and a positive transition.

But obviously those aren’t the only stories out there, as evidenced by the dozens of posts I read today on the China Talk developmental delay forum. It just wasn’t what we were expecting.

Sometimes I wonder how differently my life would feel now if Aaron and I had decided with PURPOSE to adopt a child with developmental delays—if we’d have a different perspective had we chosen the special need we got.  We had done so much reading and research on cleft lip and palate—and honestly I feel like I have that special need down pat. It’s traumatic during surgery, and it requires a lot of catching up with language and feeding, but it feels manageable. This other thing—this vague developmental delay diagnosis—is not so manageable some days. There’s no trajectory that’s clearly laid out for getting from one day to the next. It’s all just trial and error—like our “trial” with Ritalin last week that proved rather disastrous for us all.

While I was reading the China Talk forum today, however, it dawned on me that several of the parents who posted were describing their children who are now 10 or 12 or 15. Our family can’t even begin to imagine or know where we’ll land because we’re still in the middle of the story. We’re not even 2 ½ years in, and we’re still unraveling all of Matthew’s threads, trying to discern what he needs and how to best support him. It’s exhausting some days—I won’t life—but it’s also really fulfilling and gives our life the kind of extreme purpose that turns out to be a blessing in the end.

Last night during a walk in the pouring rain, I had a lovely conversation with one of my favorite fellow adoptive mamas. She’s the one I call when my heart is so, so discouraged—and she calls me when she’s in that place too. We’ve vowed to be brutally honest with one another—when it’s good and when it’s very hard.

After several minutes of me venting into the phone and her patiently listening, we landed back (together) on the conversation of why parenting a challenging adoptive child is hard but why it’s also amazing and good and purposeful. And then she said, “You know, I’m pretty sure when we look back on our lives, this parenting we’re doing will be one of the most important things we did. It will be one of the biggest blessings.”

I think she’s right.

Being in the trenches all day with a child who has developmental delays certainly isn’t easy. Maybe from the outside our lives look like they are sweet and lovely and put together, and they are some days—but they are also exhausting, frustrating and discouraging. I won’t lie—it’s a different kind of life than I expected for myself.

But we’re still in the middle of the story right now. There’s no telling what the ending will be like—who will be the hero, who will rise, where this will all end. And in this season, I’m glad that’s the case. 

Because just as I do when I read a gripping novel, these days I’m still cheering for the underdog—in this case, Matthew. I’m still holding out hope that a happy ending exists—that he’ll win the day—that he’ll stand on his own two feet at the end of this growing journey and live a life that’s fulfilling to him.

No matter what, I’ll forever be Matthew’s mama, standing proudly by his side, having born witness to each step of the journey, when the ending finally comes.

Wednesday, October 8, 2014

A Non-Verbal Boy

 One of the hardest parts about parenting a child who doesn’t talk (yet) is that I know there are parts of Matthew we can’t fully know without language.

In some ways it’s been a long 2 ½ (almost!) years of him being home and trying to relate to him without language and with very little communication overall. I do love him very much, but it does feel like there are fewer rewards to the relationship when there isn’t the back and forth communication I’ve come to know and love with my big kids.

Recently I spent some time reading through the journals I kept during my pregnancies and early years with both Maya and Sam. Once my babies were born, I tried hard to write every week about what they were doing. This included what they were saying.

As I paged through Sam’s journal, I was astounded by the number of words he could say by the time he was a year old. He could communicate so many things to me with his vocabulary. Even at the time I knew that much of my babies’ communication was nonverbal—and I do share that kind of communication with Matthew.

But how much more enriching it is these days as Matthew is starting to “talk” more in a back and forth rhythm with me. Now, much of what he says is in sign language—coupled with the few words he knows—and I can tell he’s dying to say words with his mouth too. He mimics almost anything I try to have him say, but there are several consonant sounds he just CAN’T get his mouth to say. I LOVE that he’s trying, though.

And since he’s using more signs and combining signs and words (sometimes up to 3 signs in a row!) the complexity of ideas he’s able to communicate is so beautiful to me.

I feel a new sense of calm being with him that I didn’t feel before. There’s something about knowing him, about trusting that I can understand what he needs and communicate back to him that is calming and reassuring to me. And with this new sense of calm, I also realized how many months I spent feeling anxious about the lack of communication with Matthew.

Matthew is far from catching up. He’s now on the autism spectrum and has been diagnosed with ADHD (we hope to start him on some meds next week if all goes well). He’s still somewhat non-verbal and might have apraxia of speech. But he’s a learner and a fighter—he’s persistent and loving—and he’s now a fixture in our family. He’s our normal. It’s good.

And almost every single day I have an encounter with a situation that reminds me Matthew is MEANT to be part of our family. Whether it’s the layout of our house (with Matthew’s “domain” in the attic, safely tucked away above our bedroom) or the love and support of his extremely verbal and intelligent big siblings who advocate for him, teach him, and care for him, or the amazing preschool program he’s in now, or the skilled speech therapist who teaches me something new every single visit, or just the renewed energy and courage each day to parent this amazing human being because I get to be part of all the ways he’s growing and changing—I get to witness it first hand—I’m giddily in love with my boy and so grateful that he’s part of our family.

I wouldn’t change it for anything. Truly.

Thursday, October 2, 2014

Our Amazing Guy


We’re seeing a new speech therapist these days—a woman who specializes in oral motor therapy and also with kids adopted from Chinese orphanages who have cleft lip and palate. Kind of a perfect fit for Matthew, right!

She has been encouraging us to stop worrying about Matthew “talking” and start focusing on developing communication instead. We are full bore into sign language around our house, and it’s working! Matthew has a huge vocabulary of signs that he uses regularly to communicate.

Here’s a list: More, All Done, Milk, Water, Yogurt, Open, Close, Swing, Slide, Tricycle, T.V., Eat, Car, Truck, Fire Truck, Horse, Cow, Dog, Boat, Ball, Book, Outside, Light, Tree, No, Yes, Diaper, Sorry, Help, Please, Thank You, Music, Hurts, Up and Down.

Just today, he surprised me with two new things: First of all he signed diaper and pointed at his bottom, telling me he wanted his diaper changed (it was poopy!). His awareness of his body is a new milestone and very exciting—I was just telling Aaron the other day that I was thinking it might be time to start early potty training.

He also is starting to take my hands and move them into signs as an additional way t communicate—like when he asks for “cars” on “T.V.” and I say “no” . . . and then he grabs my hands and tries again! Just like a kid, asking over and over again.

We are also enjoying Matthew’s newly acquired receptive language. About a week ago when we were at a friend’s house, I asked him to go inside and get his backpack and bring it to me. He went in the house and reappeared a few seconds later with his backpack in tow. We continue to use words at every opportunity with Matthew, especially during routines to establish patterns.

Matthew is also learning to sign the alphabet—there are a few letters he knows on his own, and he can sign all 26 letters with Aaron or me when we do it together. I feel like sign language is going to open up a world of communication for him.

Anyhow—at our house right now we are grateful for sign language—for the ways it opens doors for Matthew and all that he can learn because of it, even though he’s not talking with spoken words.