Tuesday, July 21, 2015

Some updates

Since my blog is read regularly by people in the process of international adoption, I’ve been wanting to post an update about some particular areas of our adoption that might be relevant to others who are behind us in the process—especially those considering or in process to bring home a child with a cleft lip and palate or a kiddo with developmental delays:

1) VPI: One of the possible concerns for a cleft lip and palate kiddo is “Velopharanyngeal Insufficiency” (VPI). This means, in a nutshell, that the soft palate cannot close properly, which leads to a situation where children with repaired palates cannot make the wide variety of sounds needed for language development. Matthew is still very delayed in his verbal communication, and at this point can only make a few sounds with his mouth (most of the vowels, plus a couple consonants including “m,” “y,” and sometimes “n”). 

One of the complications with Matthew is that we also suspect he has an oral motor delay. When we ask him to imitate sounds, he is literally unable to copy the sounds we make with his mouth. Our ENT (Ear, Nose and Throat doctor, otherwise known as an otolaryngologist) has suggested that there is a very likely correlation between Matthew’s palate functioning incorrectly and an oral motor delay that is also neurological.

Since Matthew has other neurological delays (including social delays, impulsive behavior, and behaviors that look very similar to Autism Spectrum Disorder), his language delays could all be part of larger neurological issues. But we also want to make sure the structure of his mouth, particularly his soft palate, is such that he CAN actually make the sounds required of him for language. We have an appointment scheduled for August 6 with an SLP at Seattle Children’s who will perform an hour-long diagnostic session determining whether Matthew’s palate is structurally sound for proper closure in language formation.

2) Autism Day Treatment Program: We are thrilled that we’ve been accepted into a local day treatment program for Autism that has received great acclaim and is having incredible success in helping kids with social delays. Whether or not Matthew truly has Autism Spectrum Disorder or is just really impacted because of such a neglectful orphanage experience, we do feel like the diagnosis of ASD at this time is a good one for allowing him to receive services and support. The program he will be completing is an intensive 12-week program that requires parents to be in the classroom 50% of the time. This is a big time commitment for our family, but we are willing to put in the time if it yields success for Matthew. I’ll keep you posted as to how it goes.

3) IEPs and school placement: When Matthew turned three, our local school district wrote an Individualized Education Plan (IEP) for him which includes several hours a week of developmental preschool services. He was in a traditional developmental program until this past March, when we moved him to an extended day, ABA-focused autism program. He made incredible strides for the four months he was in that classroom. However, at the end of the year we learned that that particular program had been discontinued in the district. I was told it had something to do with new “best practices in autism,” but honestly I also believe it’s a funding and bussing issue. I’ve had many conversations with folks in the special services department of our district, and we’re still working out the best placement for Matthew with the most support. I remember teaching high school and being the “teacher” at an IEP meeting. Now I’m one of “those parents,” advocating for my child and the optimal environment in which his learning needs will be met. It takes a lot of work but it’s also really worth it.

I was recently asked to be a speaker at our local courthouse on National Adoption Day 2015, which is the Friday before Thanksgiving. I have said “yes” to this request, but I’m thinking about what I might want to say on that day. I still believe deeply in adoption—for our family and for others who believe it’s what they are supposed to do as well. But being on this side of the process, in the thick of parenting a child with significant developmental delays, I’ve also lost my rose-colored glasses and see how hard this can be. I’m glad we did it—for Matthew, who now has a home and a family to advocate for him through all this—and for us and the many ways our adoption has changed us.

I have decided to wait a few months and see what kind of wisdom finds me—what my heart tells me to say about adoption on National Adoption Day. I do know a few things: I love my kid, I don’t regret adopting, and I’m trying to keep myself open to the many ways we are being shaped and changed because of having Matthew in our lives.

Matthew’s been with us for three years now—that’s twice as long as he lived in the orphanage. He is truly ours in so many ways. And I’m truly grateful to have him. Thanks for joining us on this crazy ride!

1 comment:

  1. The words will come to you, for sure. I appreciate reading this update.