Visit to Neurodevelopmental

I’ve promised to keep this blog current with updates about Matthew, and have pledged honesty above all, especially for those of you currently in the adoption process, so I thought it would be appropriate to give a little update about our visit to the Neurodevelopmental Center at Children’s Hospital earlier this week.

I have to admit that both Aaron and I were feeling a little hesitant about our visit. As we anticipated the appointment together, we agreed that most of our hesitation came from a worry that the staff there wouldn’t take into account the full history of Matthew’s experiences, that they would be quick to label him, or that they wouldn’t value our thoughts as his parents as much as we wanted them to.

I am pleased to report instead, that the nurse practitioner we saw did just the opposite of what I listed above, which shouldn’t really surprise me as I have always felt like Children’s is an excellent place for children and their families to receive care.

We spent about an hour talking with the NP and learned a few things that were helpful to us, but at the end of the day, she agreed that Matthew’s delays in development stem from the list of challenges he has faced in his life: 18 months in an orphanage in a situation that appears rather neglectful, an unrepaired cleft lip and palate, a change in language, three surgeries, and a transition to a new family, culture and way of life.

One additional insight the NP provided us with is this: many of Matthew’s “unusual” social behaviors are similar to those they see in children with undiagnosed or untreated hearing loss. We know from the ENT doctor who placed the tubes in Matthew’s ears at the time of his palate repair that he likely had very little hearing because of a massive amount of fluid in his ears, and once they put the tubes in, his hearing increased significantly. And we now know that he also has some hearing loss in his left ear. We obviously don’t know the extent to which Matthew’s hearing was or is impacted, but it’s pretty certain that hearing loss has been part of his life experience the past 2-½ years.

So perhaps this is one explanation that helps make sense of some of his rather strange movements, sounds, and interactions.

Most of all, our NP said she wants us to work hard to measure Matthew ONLY against Matthew—and to stay away from assessments that try to norm him or measure him based on other kids his age. We should obviously continue to pay attention to his delays in development. She prescribed some OT feeding therapy from a therapist at Children’s to help him develop confidence with crunchy and textured foods (at this point he’s still eating mostly softer consistencies from a spoon).

Overall, we were encouraged by the support we received from the NP and our team at Children’s. We’ve been asked to return again in four to six months, so we can see how much growth and development Matthew has experienced in that time. It’s funny because just this week, even after our visit, Matthew has made some more strides in his development. He’s using a few more signs now, enjoying back and forth play with faces and bodies (something new) and really focusing in on our mouths and lips when we talk to him. I wouldn’t be surprised if one of these days, either soon or a few months from now, he just started saying some words of his own.

And in the mean time, we will continue to support him in every way we can. We are so glad for all the people in Matthew’s life who help him to learn and grow: his brother and sister, Marmie and Bapa, Aunt Amy, cousin Parker, other family members near and far, his preschool teachers, his SLP, dear friends who invest time and energy in his life, and the wonderful team of doctors and specialists at Seattle Children’s who have taken such good care of him.

What a ride this is—so many things we would never have expected.  But at the end of the day, we can’t imagine life without Matthew. As I type this, he’s standing in the evening sunshine spinning a Matchbox car on the coffee table and making the most gleeful, joyful sounds you could imagine. What a boy!

And the thing that I marvel at most is the way our family life feels so normal now—like Matthew has always been here. Of course there are moments when we take pause and feel emotional about the challenges Matthew still has ahead of him.

But most of the moments in our lives these days are ordinary—normal, even. Goodness abounds in our house, and love is here too, continuing to knit our hearts together, the threads of our own paths intertwined with this amazing, wonderful little boy whom we get to call our own.

An ordinary moment at our house . . .