Thursday, January 28, 2016

Where We Are Now

We’ve reached a plateau in our adoption and parenting journey with Matthew, at least that’s how I would describe it. We’re walking the flat ridge that stretches pretty straight in front of us. We know that inclines and declines are still ahead, but at this point we aren’t worry about bracing ourselves for either, because what we see ahead is similar to what we know already.

Our family is coming up on celebrating four years of having Matthew home. I follow several groups on Facebook that include families traveling to China to pick up their children. While that journey is familiar to me and I remember ours well, it also seems like it’s been a while since we did travel. Back then life was full of adoption questions—of doubts, of fears, of anticipation and excitement. It was a good season, but the farther down the road we get, the more I realize that it was exactly that: a season.

Now we’re in the living season. The digging-in-and settling-in-and-doing-life season. In some ways I miss the big moments that the adoption season brought us, but in other ways I’m grateful for the chance to get down to just living life. It’s a good place to be.

I thought it might be helpful to give a few updates about Matthew, as I know many people still find themselves to our blog and are interested in what the path is like after a child is home. Ours is just one story, as I always remind people, and each child and family are different. But I learned a lot from reading about the stories of others (and still do) so I put this forth hoping it gives wisdom or ideas to someone else.

Developmental: Matthew finished one 12-week course of an ABA-based treatment program for Autism in the fall at our local children’s neurological center. It was a good experience for him, but perhaps it was even more helpful for Aaron and me (and my parents, too, who also participated). It gave all of us tools to use when parenting a child on the autism spectrum who also exhibits ADHD and sensory processing disorder behaviors. Matthew’s still a busy guy, still working to settle himself in the social world, but we all know better how to help him do that. We all feel more confident managing his challenging behaviors. This is such a good thing. And we are working to see if our insurance company will approve a second 12-week session of autism preschool this spring. The teachers and we both feel like another round would really benefit Matthew. He also continues to attend his morning developmental preschool program in the school district where we live. This program doesn’t help as much with his developmental challenges, but it does give him a rich learning environment where he can practice his social and intellectual skills.

Craniofacial: I just made our annual appointment with the Craniofacial Center at Seattle Children’s Hospital. It’s been a rather quiet craniofacial season for us. We were there last August seeing the craniofacial speech language pathologist—hoping to rule out VPI (velopharanyngeal palatal insufficiency)—but unfortunately Matthew doesn’t yet have enough spoken language to make this determination. When I made our appointment this year, I was told that there is a possibility Matthew might need a lip repair surgery this summer before starts kindergarten. I WAS SHOCKED. Honestly. Our craniofacial team hadn’t previously said anything about another surgery this summer, and Matthew is making so much progress with his speech production—moving his lips into position—that the idea of surgery that interferes with the muscle movements of his lip makes me terrified. I believe this procedure is “elective,” which means we can likely say NO. But of course I also want to make all decisions about surgery with thought, the right amount of input/wisdom from doctors, and also in larger consideration of Matthew and his development. I’ll keep you posted and hope we can work it out to skip this surgery so as to keep Matthew’s language development intact and moving forward.

Speech/Language: Well, our boy still isn’t talking in sentences, but he’s doing a lot more word approximations and using a ton of signs. I’d really like to seek out a speech apraxia evaluation and hopeful diagnosis for Matthew, because every doctor and speech therapist who sees him agrees he has a motor planning problem or oral motor delay which is contributing to his lack of spoken language. We also have an appointment at Seattle Children’s in late February for an evaluation in their communication center—and we hope the outcome of that is a referral/prescription for an alternative communication device (which will likely be an iPad with a speech program on it).  Since Matthew starts developmental kindergarten in the fall, it would be wonderful if he could be in that program with a way to communicate with his classmates. The biggest challenge in Matthew’s speech/language development to me is that he has so many factors impacting his delays. There’s the oral motor delay, which means he actually can’t form words. But then there are his many social delays. We haven’t had much luck finding a speech therapist who advocates for supporting him in both ways—most of our team either wants to support the social OR the motor. That’s been rather frustrating to me.

In terms of just being a general little guy, Matthew is still very socially different than his peers (and honestly, different from all other little kids). He exhibits some autistic behaviors in terms of his lack of communication and inability to read the social environments in which he lives. Sensory processing disorder also plays a huge role in his impulsive, hyper behavior. But he can also be warm and connecting—he makes eye contact readily when asked.

The biggest thing about Matthew in this new season is his willingness to smile and laugh. It’s like he finally found his smile once again. Yohan, who is Matthew’s caregiver, took all the photos in this post—and I just love the variety of smiles and happy faces that Matthew exhibits.

It’s a good life—a busy life, which is why I haven’t blogged more in recent months. We are still living daily with the impact of Matthew’s cleft lip and palate and the neglectful orphanage in which he spent his first 18 months. But we also know that every day, every week, every month that he is in our family gives him just that much more opportunity to grow and learn at his own pace.

And for that, we are most certainly grateful.