January 2019

First update of the new year! Here's what we've been up to.

Snowy Day (Rob)

Aside from an early winter storm we had in November, it has been a mild winter with relatively little snow or rain. But as expected, that changed eventually. We got almost a couple feet of snow one weekend this month, and some temperatures that dipped below 0 along with it. Church was canceled that weekend. Now things are pretty white around here again. In one of the videos below, you'll see us pulling Alex around the yard in the snow. For the most part though, cold weather means we have to find more things to do indoors, which is a challenge with a toddler in a small city. Popular options lately have been trips to a kid's activity center that is full of sensory games and toys for a range of ages. For only $5, it's a pretty great deal. You'll see pictures and video in this month's album of Alex doing stuff there. Also, we've made it to a few university men's and women's basketball games. Alex will watch some of the game, then go run around on the track behind the bleachers. It's a great way to wear him out. Our local mall is barely staying in business, but it is another favorite place to go just to let Alex run around and exhaust himself.

Close to Closing the Deal (Rob)

So far we haven't hit any major snags in our efforts to buy the house we put an offer on in late December. But the process is taking a while. There were some delays in the loan application process due to some issues with the paperwork that had to be sorted out. And the holidays slowed things down a bit too. But the loan has been approved from our end, and we'll probably close and be ready to move by the middle of February if all goes well. We reached the end of our annual lease in our current house at the end of January, but fortunately the owners were willing to let us extend a bit as needed.

Working Again (Becky)

I sure enjoyed the last year just being home with Alex.  Thankfully, my work tends to be very flexible, schedule-wise, so even though I’ll be starting up work again, I’ll only work about 6 to 8 hours per week.  I applied to a couple places and decided to go with G&E Therapies.  I’ll just be seeing a few clients (age 0 to 3 until I get state certification for older kids) for speech therapy in their homes once a week.  

It’s been hard to accept the limits of autism services here in New York.  I was able to see clients with ASD (Autism Spectrum Disorder) in Arizona for 2 hours per week and was always training habilitation providers, who would work with the child outside of my sessions.  Along with the parents, these habilitation workers would provide up to 40 hours per week of speech/language and Applied Behavior Analysis treatment.  (I am an SLP and BCBA who works with other BCBA’s in the home so that speech and ABA therapies are pretty much merged together).

Here in Binghamton, there are no BCBA companies to provide home-based ABA and the state does not provide habilitation (i.e., Habilitation workers are a family's full-time speech and ABA support team) for children with ASD.  In addition, I am only allotted 30 minutes per week with each child and the reimbursement rates/pay for SLP’s in New York is much lower than in Arizona.  

That being said, I should be able to make the case for an increase in treatment time for my kids with ASD.  I intend to make sure they at least get 60 minutes per week.  I should be able to justify 60 minutes pretty easily by defining the needs of the client and by citing the medical research regarding the amount, duration, and scope of effective treatment for ASD.  With any luck, I’ll be able to get two hours per week for some clients.

There is an ABA clinic at Binghamton University, but they only offer full-time work.  So even though I won’t be working as or with a BCBA, I at least have a place to refer families to.  I’m hoping to network with the SLP’s and BCBA’s in the area, familiarize myself with the state’s service and billing procedures, and become part of a collective advocacy movement for better treatment of ASD locally and statewide.  Once I get to know the people and the system here, I may be able to do some good.

So it’s back to work, while leaving the majority of my time available for Alex.  He needs a lot of my attention right now since he is not talking and should be.  So when I’m not doing therapy out and about, I’ll be running procedures with Alex here at home.  He’s picked up a few skills so far and we’ll be having him formally evaluated by the ABA clinic at Binghamton University on February 4th.  Between the new job, new house, and new ward, this should be an interesting year.  I am most anxious to see how Alex does in the days ahead.  Hopefully the combination of home and clinic-based therapies will help Alex catch up.

Alex Updates (Rob)

It's pretty clear by now that Alex has a strong, independent personality. Whatever he does, he does it with a focused determination that makes it seem like the most interesting thing going on to other children around him. But he usually ignores them when they try to come play with him (social skills aren't his thing yet). He would often rather flip through books on his own than have us read to him. As Becky noted, he's not very verbal, so Becky is working on getting him to show more interest in communicating. He can say some words when he wants to, but usually just babbles a spectrum of sounds in what seems like his own language, often when playing by himself. We think he might have an imaginary friend. He's not into cars as much anymore, but he loves puzzles and he loves to run. He's also moved on now to walking backwards, which he thinks is pretty clever. (he doesn't realize MJ thought of it first). He's a picky eater, but has no limits to his appetite when he does eat. Bananas and sweet potatoes are favorites, as well as cereal, bread and anything with carbs. We often have to sneak other forms of nutrition into him by hiding it between slices of bread. He's learned to use a spoon now, and often won't let us feed him things like yogurt unless he gets to scoop it himself. This gets pretty messy of course.

Miscellany (Rob)

Becky is starting up another session of tap dance classes at the university. She also participates in a university women's group book club, and they are currently reading Michelle Obama's autobiography. My efforts to start a monthly potluck at work have led to me being appointed to lead a committee tasked with managing input from colleagues on ways to improve the work environment (which is generally very positive, I should add). And so my foray into work politics begins. One year into this job and it's gone well so far. Still adjusting to life in the office instead of the lab, but it's hard to imagine a better place to make that transition. One way that we keep ourselves entertained at home is by trying new recipes. Becky has really expanded here cooking repertoire, and I continue to try to make something fancy on occasion (see my tacos above). Of course, Alex rarely wants to eat any gourmet dishes that we cook. We were invited to someone's home from church for dinner who lives out in a rural area with lots of land in a very old house that they have maintained. We enjoy seeing how people live in places like that, which are very different from our city-slicker heritage. I admire how self-reliant, resourceful and welcoming they are. I wrote an article for an online magazine about the structure of viruses (my old research topic); you can read it here.

As always, here is a link to this month's photo and video album. Note that if you click on the "i" inside the circle after you go to the link, you can read captions for the photos. Enjoy!