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.