New Diagnoses

Last Friday, we had a very important (and helpful) appointment with a neurodevelopmental pediatrician from Seattle Children's Hospital. Previously we have had a couple visits with a nurse practitioner from that department, but this visit we really wanted to dig into some of our questions regarding Matthew's neurological challenges. We spent 90 minutes with Dr. Myers and really appreciated her wisdom and counsel.

Two rather big things came out of that appointment. The first is that she is encouraging us to try Applied Behavior Analysis (ABA), a kind of one-on-one intense therapy that has proved very effective with autistic kids who need help learning to develop stronger social and adaptive skills (two areas where Matthew really struggles). In order to help us access ABA, Matthew has officially been diagnosed with Autism Spectrum Disorder (ASD, or more commonly just known as autism). While we still are unsure about whether or not Matthew really has the kind of organic, brain-chemistry type autism that many children are diagnosed with these days, or whether his ASD mostly just explains and categorizes a series of behaviors that he exhibits that come from his significant early neglect, we don't know. But obviously Matthew's brain doesn't function like a healthy-developing child, and an ASD diagnosis gives us language to describe his challenges and some additional tools and resources to support him. It also, as I'm finding, opens us up to a whole community of families who are raising kiddos similar to Matthew, which is really helpful for us in not feeling isolated while parenting him.

The other path we've decided to pursue is to start Matthew on a low dose of Ritalin. To do this, he'll also be diagnosed with ADHD. We see the ways Matthew's body gets in the way of his learning--and we see a lot of impulsivity from him (throwing things, hitting, making loud noises, disruptions, etc with very little self control) and these behaviors are pretty typical of kids who have the hyperactivity/impulsivity aspect of ADHD. We don't enter into putting Matthew on medication lightly--it's something we've carefully considered. There are some side effects (like slower growth, sleep disturbance, and a kind of spacey kiddo) but based on Dr. Myers's recommendation and with everything we read, if medication can help settle Matthew down so he can learn better, the benefits greatly outweigh the risks. There is nothing life threatening or concerning about Ritalin other than the sometimes unpleasant side effects, and each kid responds differently to the medication. And if Ritalin isn't a good fit for him, there are many other types of medication we can try.

I hesitate to share this information about medication on this blog, since it is a public space of sorts, but I am committed to being honest about our experiences with Matthew, as I know many other adoptive parents read our blog as well. A few years ago I might have categorized myself as being "anti-medication" when it comes to ADHD and kiddos, but after living with Matthew for 2 1/2 years and trying so many attempts to help modify his behavior through routines, words, structure, etc., we realize that Matthew's brain chemistry is likely working against him when it comes to functioning in a healthy way with the rest of society. I'm excited to see if a small dose of medication can help him find a little more balance and give him a chance to focus on learning (rather than dealing with a rather out-of-control body).

We have an appointment with Matthew's primary care pediatrician next Friday morning to talk about meds and get the first prescription. We've also made contact with a clinic that does ABA therapy and hope that if our paperwork comes through in a timely manner, we can begin ABA within the month.

A couple days ago a friend asked me how I was feeling about getting an Autism diagnosis and an ADHD diagnosis all in one days. I told her that I was okay with it. First of all, Matthew is a human being and not a series of diagnoses. We came home from our appointment last Friday and Matthew was STILL Matthew--with his many challenges and all his humor and love and hilarity as well. These labels do help to define him so we can access more resources and support, and I suppose in some ways they help those around us understand Matthew a little bit more. They also define behaviors we already know existed.

We have been investing in Matthew for the past 2 1/2 years while also knowing that his brain wasn't functioning in a normal healthy way. Getting some clarity about what's going on with a clear treatment path is actually a relief for me and brings me a lot of hope about Matthew's future.

I know I say this a lot, but I can't end this post without expressing gratitude for all those in our lives who support and love us through these many ups and downs. Having a support system is such a key thing--and in some ways it determines whether things like this bury us or help propel us forward.

And most of all I feel gratitude for Matthew--for his presence in our lives and the gift that he is, and always will be, to us. I'm learning to let go of expectations, of fears, of worries, and just embrace each day as a chance to take a couple baby steps forward and help him move closer to reaching his full potential.

This Summer

Here's what we've been doing this summer at our house:

Playing together in the back yard.

Taking road trips to fun places

Playing at the neighborhood splash pad

Enjoying the sunshine.

Helping Matthew experience new things.

Being silly with cousin Parker.

Going to the Sounders game.

Hiking in the hot Boise hills with my parents.

Teaching Matthew new skills.

Watching "Mater's Tall Tales" over and over again (if you're Matthew).

Spending time with sweet cousin Hayden.

Pushing cousin Parker on the swings.

Spending time with second cousins.

Being totally adorable.

Building a raft out of fallen trees.

Learning to fish.

Exploring the North Cascades in all its beauty.

Hiking in Glacier National Park.

Enjoying being together with aunts and cousins.

Escaping the kids for a VERY hard hike to Apgar Lookout.

Celebrating Matthew's adoption re-finalization.

Being blessed by family who come to celebrate with us.

And with that, fall is upon us. Trinity students arrive on campus tomorrow and the college's first day is Monday. Our own kiddos start back to school the Wednesday after Labor Day. There's still just enough time for a beach day on Camano Island this coming Sunday and a couple nights in the Cascades during Labor Day before we truly welcome in Autumn and the return to the school schedule.

Kids are growing and learning--parents are busy--and life is well for the Russells.

Thank you

Hello there.

If you’re still checking our blog after a long season of no posting, I’m really grateful. I suppose there are dozens of reasons you could think of why I haven’t posted anything for a while. Most of them are probably true.

It’s busy at our house. It’s also kind of up and down with good days and hard ones, and I find myself at a loss for knowing whether to tell the good stories or the challenging stories—or none of them at all. I don’t want to sound like a broken record, and I certainly don’t want to evoke pity, although I do appreciate understanding and support.

Our family has also shifted from being so focused on bringing home an adopted kiddo to living as family with a child who has quite a few special needs. In my earliest posts related to Matthew, I spent my time and energy focused on his adoption—and explored that wide range of emotions and feelings. But now I don’t exactly feel like we fit in the adoption community like I had hoped—we can’t fully enter into some things I expected to find myself in—like preserving a culture for a boy who knew and understood he was adopted. Right now Matthew has no clue he’s adopted—nor that he’s from China—nor that he looks different than the rest of his immediate family. These things don’t really matter right now.

What does matter is his delayed development alongside the amazing yet subtle milestones he achieves each day. What matters is this mama’s heart, adjusting and learning, trying to wrap my head around this little person and all it takes, right now, to help him learn and grow. Both Aaron and I have committed ourselves these days to being very present with our children, which doesn’t leave a lot of extra time for things like blogging.

But I did have something to say this morning—something that I feel deeply in my heart. I wanted to express my gratitude to all of you who are walking this journey with us. SO many of you play an important role in this season—whether you spend time each week with Matthew, pouring yourselves into him (like some of my family members and also some of our friends) or whether you kindly take my phone calls, even when I’m calling again to process, to tell you it’s hard, to tell you I’m scared, or to celebrate some little, tiny achievement of Matthew’s that has taken on giant-sized proportions in my heart.

Thank you to those of you who willingly keep our big kids for an hour here, an hour there, so we can take Matthew to yet another medical appointment or OT or SLP visit. Thank you for your wisdom and love—for not giving up on us when we live this life awkwardly or selfishly sometimes.

We couldn’t do all of this without the investment and support of our wider community, and I feel—daily—a deep sense of gratitude in my heart for all those who come alongside us.

And on the days when it’s actually fairly calm here at our house—when it’s not so hard (because we have those days too)—I still feel the love and support and companionship of our community, and I know our kids feel it too. All three of them are growing up with the deep and abiding love of so many people. It does take a village to raise our three—and they know it and are blessed by all the pouring in of so many people.

So we’re here—we’re busily doing all we possibly can to invest in the three small people who inhabit our home and our days. And we’re glad that you’re here too—in person or in spirit.

Summer and developmental delays

I’ve been a very reluctant blogger lately, partly because I haven’t exactly known what to say and partly because I haven’t found the time to do any post justice.

It’s summer around here and that means slower days, sunshine, hours playing in the backyard, and a mama who actually has time and energy to be a real human being (not just a professor, communications director and exhausted parent). I’m still working about half time, but I don’t have to roll out of bed so early to get kids out the door. We’re all sleeping better and we’re nicer to each other in general. I’m drinking less coffee and more water. It’s good.

Yet the challenges in our house go on too. Matthew’s development is still slow, and I feel in many ways like we are living into the title of “special needs family.” It’s hard because I feel so sad for him and am still acutely aware of the profound losses he as an individual and we as a family are experiencing because of his many delays. In a frank conversation with our pediatrician this afternoon, she basically told me straight up that she’s pretty certain Matthew’s delays and challenges will be life-long for him. That’s not really a surprise to me, truthfully. On the outside I’ve been holding up this façade of believing that at some point he’s just going to snap into “normal kid mode” and life will move forward for us in the way we once expected it would. But in my heart (and my head) I’ve known for a while that our boy comes to us with a myriad of challenges that aren’t easily fixed or remedied.

It’s actually good to have a doctor finally speak these words aloud.

But then honestly there’s this other part of me that believes Matthew is developing in his own time. I’m not living in some delusional dream world where I think that one day he’ll just “snap out of it” and be speaking in full sentences. But each and every day he is working SO hard to learn and grown and change. I can just see the wheels in his head spinning each time I ask him to say a word or complete a task. His receptive language is growing in leaps and bounds. And he is definitely gaining skills and moving forward. Even our pediatrician complimented him on all his growth.

Which makes me ask the question, how much do I worry about him and how much do I just let him develop at his own pace?

Yes, we are now a special needs family. I’m the parent of a special needs child. These things are true about us, and they are things I wasn’t expecting. But I also know we have the skills, the passion, the resources and the support to parent Matthew and help him grow and thrive as much as he possibly can. When I'm especially discouraged, it helps me to remember these things.

So I’m committed to this task. But just so I don’t mislead my readers (some of whom may one day be special needs parents themselves), it’s also hard. I doubt. I grieve. I worry. I feel poignantly the many losses that both Matthew and our family have sustained because of his many challenges. And I'm tired a lot too.

There are hard moments in our days—especially when my mind starts to play tricks on me and tell me I can’t do this thing that’s in front of me.

But there are other times when I feel an overwhelming sense of gratitude for the journey that is ours to walk. I LOVE Matthew so much—and I feel so attached to him. So even when it’s hard, I’m committed to helping him be the person that he’s created to be.

I also feel grateful for the faith that sustains Aaron and me through this journey—for a sense of “call” to this path of adoption and the way that the prayers and encouragement of others buoys us and keeps us walking forward during the rough patches.

Mostly I wish you all knew this boy the way I know him—his laughter, his learning, his kisses and snuggles (a relatively new thing), the joy he takes in discovering new things. My heart almost breaks with the weight of how much I love him.

What a complicated, beautiful, hard, amazing thing, this path of parenting Matthew. I had no idea how complicated it would be.

Nor how breathtakingly lovely.

Matthew and me with sweet baby Hayden, my niece.

A couple of Baywatch beauties!

Maya and Sam are with grandparents this week so M and I get some extra snuggle time.

Taking a neighborhood walk with Daddy

Our boy playing in the backyard.

To Matthew on Gotcha Day

That moment when I birthed you from my heart was not like when I birthed your sister and your brother.

With those first two, the pain ripped through my body, threatening to tear me apart with each push. Their bodies emerged from my own—wet, new, and covered in water and blood.

Their first cries pierced the quiet birthing rooms, announcing their presence, their place in the world. I cried tears of joy and relief, and I reached gently and pulled those new, limber bodies to my chest, my breast, my worry overcome with mama instinct as I snuggled those babies close to my heart.

Your birth was different. The room was loud with the cries of other babies, each one caught  by a mom or a dad who had waited months to welcome them with anxious hearts and joy mixed with fear.

I was overwhelmed with emotion waiting there, desperate for just a glimpse of your face, the face I had stared at for hours in the months we waited—singing to you, talking to you, praying for you.

When they put you in my arms, you felt small and helpless as you pressed your body into me, fearful and unsure. You looked up into my face and held my gaze, and as I cried tears of joy, you must have felt a kind of terror I’ve never known. It was a transfer—a passing—from one life to the next, and I will never know what you left behind in that moment.

I gained you, dear boy, and you lost a country and a culture—when so many months before that you had lost even more: your family and the potential for life in the place that was your first home.

In my arms you felt strange—smelled strange—but I clung to you just as you did me, and when I put you in your daddy’s arms, he began to rock you and sing to you, just as he did with our first two babies. It was that moment—watching the two of you together—that broke the spell of my worry and grounded me—watching Daddy sway back and forth with you, his quiet tenor voice humming the same hymn he sang to our first two babies for so many months.

When he handed you back to me again and I snuggled you close, I made the same promise to you that I made to your brother and sister—to be your mama forever, to take care of you always.

You came to me a different way, birthed in my heart, but that moment of your “gotcha” haunts me in the same way I’m haunted by my laboring to birth your sister and brother. It was a passage for them from the womb-world of warmth and quiet to the bright, cold reality of lights and harsh noises and always needing something more.

But your birth from womb to world had already occurred, and that moment signified something more than separation from your mama’s body to her arms. Somewhere along the way, you were also pulled (or handed) from that mama’s arms to a new strange place, where you learned to calm your own cries and to stop asking for what you needed. You didn't know there was more to need by the time I met you.

When you arrived in my arms, you didn’t know warmth or softness or the lull of a mama’s voice. You had to learn those things, and I will always be haunted by all that you were asked to give up in the first few days of your life.

And that day, when I finally “gotcha,” you once again gave up what was familiar to you and held me tight with your body, and you birthed yourself into my arms and my heart and my life. And your dad's too.

I am so grateful, my brave boy, that you made that choice. That you chose to trust me and your dad, that you decided to embrace this new life we are helping to make for you.

And today, though I am across the country from you in body, you are near to my heart and my mind. 
I will not forget the first moment I held you.

And I will also never forget what it cost you to be a willing participant in your birthing into this new life.

Wonder of Wonders

Sometime the milestones with our boy are mini and I only feel them in my heart. But once in a while we have a really BIG milestone, and I feel like shouting it from the mountain tops.

This is a mountain top kind of week.

Matthew is eating food on his own. From a plate. Not a mush or mash, but several different types of food in separate little piles on his plate. Glory be.

Not only that, he’s drinking water from a squeeze bottle all on his own.

It’s miraculous.

This is an amazing season with our boy—and I apologize for not blogging more about it. Life is also very busy and fast paced, with the end of the school year looming and so many things to get done, both at home and at work. But I’d be remiss to not at least share with you that we are seeing new and wondrous things each day in his development. He’s moving forward in his social skills, his communication, his eating, and his play.

And both Aaron and I also feel a shift in our hearts. It’s subtle, but it’s there.

I’ve read so many adoption blogs, and again and again I hear about the two-year mark. The first two years are so, so hard, and then when families round the corner into the third year, it’s like things just settle in and life becomes normal in a way it wasn’t for the two years prior. On May 28 we will celebrate Matthew’s Gotcha Day again, TWO YEARS with us, and it’s just recently that we’ve felt a kind of goodness and permanence that is new and so, so nice.

It’s not like every day is perfect. Some days are still hard. But we’ve accepted our boy, delays and all, and we feel SO grateful that he’s part of our family. We’ve quit asking all our “why did this happen” questions and have learned to embrace this journey we are on. And frankly, it feels quite normal now. Life feels normal. Matthew is so familiar. His delays and challenges are familiar to us, and we are encouraged by his many successes.

It’s good.

Send up your cheers for our boy—who is learning, growing and changing each day. And know that we are celebrating the sweetness of this season in so many ways, big and small—its normalcy as well as all the huge steps Matthew is making as he continues to gain skills and reveal more of who he is to all those around him.