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.

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.

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.

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.