Monday, November 21, 2011

Transition Time

Today marks a day of many transitions for Dean. Here's my attempt to explain it all. I also realized when I checked on the PWS Resources and Treatments page above, a lot of the information was out-of-date.

We have decided to sign Dean's IEP discussed the other day, which means that he will start his plan next week! Holy cow! This means that we are ending his services with Early Intervention *before* he turns 3 and this will take its place. So every week, Dean will get physical therapy, have an educator come to our house for a session, and then attend a group session (I come) with other kids with special needs and some typical models one morning a week.

In addition, we're adding PT, eventually OT (after we get off the long waiting list!), and speech therapy weekly through Children's Hospital. They have a therapy center here in Bon Air that is seriously 5 minutes from our house. So that's where he'll get his therapy.

We're going to continue with the weekly hippotherapy if possible.

Finally, today a new possibility came up - ABA! Read more about ABA here if you're not familiar with it. It's typically used with kids who have a diagnosis somewhere on the autism spectrum, but it can be used successfully with children with other neurodevelopmental conditions as well. PWS would be one of them. There is a local agency, Lutheran Family Services, who pre-screened us for eligibility and said Dean will likely qualify. There's still a mountain of paperwork to complete, and it would be for "only" a 6-month period at first, but it sounds like a great opportunity. The catch? It's 10-15 hours a week! However, that includes them coming to his appointments at Children's (for coordination of care - what a crazy idea! :)) and other time that is not directly spent with Dean.

All in all, it's going to be a LOT. But since we have moved to Richmond, we've taken a big step back on therapies (partially because of what the county would - or should I say wouldn't - offer us). It's time to get back in gear. I made about a jillion phone calls today to get this all happening.

Please don't confuse me for one of those parents who overprograms their children at a young age. This is very, very different. These activities and therapies are not to beef up Dean's resume and get him into a top 5 school. I mean, that's fine, but these therapies are to help Dean - and let's be honest, to help US! - navigate the many, many ways in which PWS affects him on a daily basis.

I read an email on a PWS forum from another mom who said that her daughter is doing so well that they rarely think about PWS anymore. That's really not our situation. Dean is on the side of the spectrum of being more than less affected by PWS, and he still has a lot of challenges each day. Heck, we can't even let him go to sleep without having to worry about his oxygen levels (they're still not good while he's sick). PWS affects us 24 hours a day, 7 days a week. It doesn't mean that it "won" or that life is horrible - quite the contrary. But Dean and we fight for much each day. We are thankful for these therapies that can help him.

4 comments:

Kevin said...

Laura and I failed at this after Sarah was injured. God looks out for those who make mistakes. Sarah's boyfriend was from a well-connected, out-going family and knew how to work the system. Sarah went from compartmentalized, unmotivated care in NY to residential, coordinated care that was based more on practical exercises in meeting needs and less on measurements for injury extent knowledge with no plan for the future.

Ali Foley Shenk said...

Isn't it crazy how different things can be? This is the stuff that keeps me up at night sometimes - thinking about whether my kids (Dean in particular just because it's all more complicated) are getting what they need. Sigh.

Dorette said...

Ali

I think this sounds wonderful!

As a fellow pro-theraphy mom I "get" it.

Thankfully (at this stage) for us it is only PT and OT (so two sessions a week) - but combine the daily home programme with school, music class and swim class - it is a lot for a 3-year old little boy!

As parents, our logic is that as long as he enjoys it (and he normally does) - it can do no harm. He thrives on the extra attention, and time spend on excerices are special bonding moments between us.

(By no harm, I mean no harm other than to our wallet - no such thing as Early Intervention programmes in South Africa. Every session is paid out of pocket. Ouch!)

But we don't want to be in a situation where 5 years down the road we wished we've done more, tried harder. KWIM?

Ali Foley Shenk said...

Dorette,
That's crazy that you have to pay for everything OOP! Holy cow, we'd be broke! Definitely, Dean would have a different therapy schedule if that were the case.
Ali