Thursday, July 31, 2008

Being a Shut-in can be fun right?

Samantha was doing so great until a week ago when we stopped doing program for various reasons (dentist appointments, out of town guests, Samantha's birthday, etc etc). Now that we have returned to program I feel like she's regressed and it's really not her fault- it's mine. She is just not in the routine of doing program anymore. I think her cognitive abilities are the same, but her focus is totally gone. It's a vicious cycle because now it's harder for me to work with her so I get less work done and she continues to struggle. I see this cycle coming every time we get distracted from our daily routine, but can't manage to avoid it. I think the only answer is to become a complete shut-in. So, when you wonder why I am hard to reach or not anxious to do things during Samantha's awake hours, now maybe you'll understand why. The fun times (ie forgetting about program and pretending I'm a normal mom) just aren't worth the week long battle that follows.
I should throw a little more info in to make sense of the above post. Samantha's "program" is a list of activities that we work on daily to address various aspects of her developmental delays. Some examples are listening to her music (www.thelisteningprogram.com), speech activities, sensory/tactile activities, etc. Each activities is prescribed to last a certain amount of time and to be repeated a certain number of times. If we did every single activity, we would be doing about 92 activities per day (this relates to probably 4 hours of constant learning. how many hours of one on one learning would she be getting in a public school?? Hmm....).
This program was set up by a place called NACD (www.nacd.org). They are located in Ogden, Utah and we have an evaluation in person every three months. Every month between evaluations we video tape her program and review it with our support person (Sara) and tweak her program as needed to maximize our success. In the beginning I was trying to get 100% of her program in every day and it was killing me to say the least. Sara told me that families who get in 50-60% of their program see good results and so 50% is now my goal and it's still pretty tough. I will say though that it makes a huge difference and I believe in the work I am doing with Samantha 100%. She has made a lot of progress in the 7 months that we've been doing this. She started at a sequential processing level of 1 (how many "things" in a row you can process. Take the test for yourself! http://simplysmarter.org/) and we are now working on 4's. That is huge as each level of processing relates to a year of cognitive development (most adults top out around 5-9. Some kids (aka geniuses) on an NACD program are processing in the teens).
Two days ago we added a whole new element to her program after having a Speech & Language specialist evaluation. This is a good sign too because she previously wasn't making enough attempts at language to even bother working on these types of activities. I am completely intimidated at the thought of how to get Samantha to do these new activities as the "speech thing" feels like the final frontier with her. I can break through a lot of things with her, but I am feeling completely humbled at the thought of this and am putting my faith in both NACD and higher powers that this is actually going to be something I am capable of. I have always believed Samantha will talk one day, I've just always thought it would be completely on HER terms. And really it is, but hopefully I'll find the inspiration to know how to prod her along in the right direction.

4 comments:

carriet said...

Heidi, thanks for your posts. In one of them you mentioned the myomunchee. I've searched for one online but only find it at the Australia site. Did you get yours in the US? If so, how do I get one? I'm in WA state so doing program through the NACD wouldn't work unless they'll just sell me a myomunchee, if that's where you got it. Thanks for your help, carrie

Heidi said...

Carrie- Sorry, I just noticed your post. The myomunchees are available through the NACD bookstore. The site is nacd.org. Then click on the bookstore link and do a quick search for Myomunchee.

Heidi said...

Carrie- I should have mentioned, NACD does program with kids all over the world. When I went for my first visit there was a girl from Ireland there. They have satellite offices, etc that may be closer to you and for the most part it's a "home school" program that only requires visiting with them once every three months. (Incase you are interested at all) Also, if you have any other questions for me, I've changed the settings on my blog so I'll be emailed if you make a post. -Heidi

Jasmine said...

Hi Thought you may be interested the official site is myo australia . This is Dr Kevin Bourke's site. Dr Bourke is the inventor of the MYO munchee and can help you out with any questions.