Sunday, July 18, 2010

Another Retreat Gone By Too Fast

Another ASM Family Retreat over with. Another weekend gone by way too fast. I went with so many expectations thanks to my wonderful experience last year and I was never disappointed. I have so many things I want to say about it, but I feel a lot of it will be a repeat from last year's blog, so instead I'll use my handy bullets, my favorite way to condense a ton of information.

The Cons:

♥ Brian's issues he's been having lately with certain things needing to be just so seemed so much apparent in the tight quarters of our dorm room and sharing a bathroom with other families. The first evening was so full of tantrums those aforementioned expectations were in danger of being broken.

♥ Sleep. Ugh. I shared a bed with Brian and seven trains in a room that felt like it was 90 degrees. Brian decided to have a reverse reaction to melatonin and he just could not sleep. Therefore I did not sleep.

♥ Brian didn't have a BM all weekend.

The Pros:

♥ Sleep may not have been great BUT Brian stayed dry both nights- thankfully! Really would not have been in a good mood if I had awaken in a pool of urine.

♥ Josh accompanied us this year and I was really happy with how he jumped right in!

♥ It was great being a "veteran" retreater and having respite providers remember the boys and seeing friends we had made last year and seeing how everyone has grown.

♥ We had more time to get to know the other parents and by the end of the retreat I was really able to put each child (typical and autistic) with which parent.

♥ I had a wonderful, free massage!

♥ We all felt welcomed the entire weekend. Again, that feeling of belonging. Not being judged by others when our child is flapping. Not having to try to get Brian to conform.

What I learned:

♥ Maine has the third largest prevalence of autism in the United States- 1 in 80 (it was 1 in 77).

♥ That ASM has a 5 page breakdown of the new DOE regulations of the most common problems we face as parents (so if you are in Maine- email them for a copy!).

♥ Seizures, which I knew were common in kids with ASD, generally start at the following ages: 5, 10, 15, and 20 years. So though I thought we were in the clear maybe we're not? (But of course hopefully we are!)

♥ That there are SibShops in Maine for siblings of kids with disabilities. And we aren't the only family that struggle with how to make sure our "typicals" are getting the attention and information that they deserve.

♥ Maine has a couple big grants hopefully coming our way thanks to Obama finally putting money in the Combating Autism Act (that Bush started to look cool, but failed to remember to put any money behind it). They are working on making universal screenings at 18 and 24 months for autism to be included in the well-baby visits.

♥ Most important lesson: Remember to never give up on advocating (Dani G just wrote a great post on this as well). Remember the supports you have at ASM- they are more than happy to send a specialist to an IEP meeting if you are having a hard time and they'll help you find a lawyer as well!

♥ Attended a great class with an OTR on sensory integration- I'm going to do a separate blog with some of the stand-out pieces later on.


Lynn said...

Good for you for gutting out the cons and getting the most out of the experience. Sounds like a great retreat!

Christina said...

The seizure info is very interesting...I pray Brian is in the they have any idea why they start at those milestone years? Glad you had fun!