Why less updates?
I haven't been sharing as much about what's going on with Josh lately. If you look back over my blog history, this is a change. It's partly because "special needs" life has gotten easier - on the medical front, things feel nearly normal. Most of the dozen+ specialist doctors have downgraded us to "call when needed". We haven't had many occasions for the ER, and we have had zero surgeries, in the past couple years. This is all a huge blessing.
But there are still some challenges, and I've hit the brakes on sharing as much about those because as my kids get older, I feel more and more that information about them is theirs to choose to share or not. (I'm only talking about hitting the brakes on the more heavy and vulnerable stuff; you may have noticed that the light, fun, positive stuff continues to get shared all the time.) I feel conflicted about this because I also think there's tremendous value in sharing our stories to change hearts and minds, and to make the world a little friendlier and more inclusive to children with disabilities. This is one of the reasons I shared so much before, and I respect those of you who do share. Like so many things in parenting, it's hard to know what's the right thing to do and it's very individualized to the specific child and my opinion on this might very well change over time. I'm still very happy to have private conversations with anyone who is interested or who might be going through similar things. (And yes, I feel a little ridiculous to have this level of analysis and navel gazing for a small-readership blog that is mostly limited to friends and family.) So while I sometimes still share very general things, or successes, or prayer requests, I'm planning to be more limited about how I do this on the Internet.
Having said all that, I do want to give shout outs to two things that are continuing to make a big positive difference for Josh and our whole family: 1) therapies and 2) inclusive education.
Therapies
We currently have a combination of speech and occupational therapy going both inside and outside of school, and while there's been many shifts in the details, there's been a combination of therapists working with Josh for his entire life. This is very typical for kids with a genetic disorder. There's some sacrifice in this - for me it means extra paperwork and dealing with insurance, for all of us it means we're busier than we would like to be, and especially for Josh, it means putting in extra hard work outside of the school hours and giving up precious down time / play time. (The therapists are awesome about minimizing the "hassle" aspect of all of this and about making the experience as fun as possible for the kids, which is definitely not the case with all providers.)
Having said that, the benefits of therapy hugely outweigh any hassle. Because of all this ongoing support, Josh is able to have so many more fun and meaningful life experiences. He attended VBS for the first time this year and is currently attending a day camp at Lake Tahoe (complete with camp bus - see pic above!), and there are so many things therapists have helped with - oral eating, changing clothes, asking for help, tolerating sensory experiences, the list could go on and on - that make activities like this possible and fun for him. We can eat out at restaurants. He can run around and play with other kids. He can draw incredible pictures and tell elaborate stories to express himself. He made sweet cards for Mother's and Father's Day. All these are things he loves (except restaurants, but they are tolerated), and the skills that allow for these things have been helped along by therapists.
Inclusive Education
Inclusive education means that a child with a disability is included in a mainstream classroom as much as possible, and ideally is given the level of support to make this work well for everyone involved - the student, the teacher, and the classmates. Our kids go to an elementary school where inclusive education is prioritized. The principal has a PhD in special education and her knowledge and support of special education students flows down and is embraced by the rest of the staff. (This is our zoned, public elementary school and while we did do some asking around when figuring out which school zone to move into and followed our teacher friends' advice about which school was the most special ed friendly, we largely lucked into this good situation.) School hasn't been without bumps, and there's hard work going on by everyone, particularly the general education teachers and Josh. The teachers are having to come up with creative solutions to challenges, having to communicate exponentially more with parents and other team members, and are dealing with all kinds of extra scheduling and logistics and paperwork. Josh is working hard to meet the extra social, practical, and academic demands of a mainstream classroom. Inclusive education is not easy, it's not cheap, it's not the path of least resistance, but it's so incredibly valuable. Here are just some of the possible benefits of inclusion:
- Students with disabilities are given the best chance to learn by having maximum access to the regular curriculum (because many times students are able to take in much more than they can communicate back out);
- Students with disabilities are encouraged to act independently as much as they are able, which builds towards the goal of independent adulthood, which means investing in students with disabilities while they're young can save society money in the long term;
- All students have the chance to be kind and including, which benefits both those on the margins who are being included and those with plenty of friends who are being includers;
- All students have opportunities to interact with those who are different from themselves and broaden their lens of what's possible. This might sound like a warm, fuzzy, meaningless sentiment, but it's really not. One friendship in grade school may influence who you decide to hire, how you run your church, who you befriend as an adult, how you vote, and how you conduct yourself with neighbors and co-workers and everyone else you encounter in the world.
So in summary, things are going well for J, and we owe a lot of that to our therapists and school. And now we are all glad to be enjoying summer!
