Ayden spilled his milk at lunch today. He wasn't paying attention when he sat it down, and it caught the edge of his plate. I watched it happen, and am working on "uh oh" with the kids when they do something wrong. (It seems silly, but when my eyes can't be on them every second uh-oh can certainly save me a stain on my carpet or a kid or me falling because they spilled on the linoleum and didn't mention it) So, I say "uh oh!" as I'm grabbing a towel to clean up. I watched Ayden start to get upset, then...
Monday, March 28, 2011
Friday, March 25, 2011
PECS Cards
We started having some success with PECS at home finally with Ayden. (He's been using it at school since October or so.) PECS is our main focus area for the summer - so I just started a little early. I'm going to make all the cards myself for now, then just add new ones as needed. I took the time and created a Photoshop template tonight that can hold 8 3x2 cards.
We will be starting with some...
Thursday, March 24, 2011
A Small Success
Ayden used his PECS system at home today to ask for what type of drink he wanted. It's a small step, but one we haven't been able to get him to do at home yet. (He uses it very successfully for some things at school such as his snack and his favorite toys). I'm a very happy mommy and hoping it makes our summer goal of getting our own PECS system in place very obtainabl...
FXS Carriers
After some debating in my head, I've decided to go ahead and post something this is not directly related to Ayden, but does pertain to me and multiple family members of mine as well.
See, my family carrries the FXS mutation. As far as I know, it goes back to my Paternal Grandmother's family, most likely her mother was a carrier as well. It can get mildly complicated, but here's a graph that kind of shows how it is moving through...
Saturday, March 19, 2011
Our Park Visit - Success!
Today, was a great day.
We took our first trip to the park today with the boys. It's always difficult for us going to the park because Ayden primarily hates it, and Issac loves it. At the very least, it's a two-parent job.
Last year, our first trip was in April. Ayden spent the ENTIRE time screaming. He didn't want to swing, he didn't want to slide, he basically didn't want to even go near the playground equipment. Of course,...
Wednesday, March 16, 2011
Overwhelmed
We're two weeks past Ayden's diagnosis today. The title of this blog says exactly how I'm feeling, but not all in a negative aspect.
I'm overwhelmed first because of the information flow I've been receiving. For those geeks out there, it's much like I imagine Neo felt the first time he was hooked up in The Matrix. Definitely not a bad thing, I want to sponge all this up not only for Ayden, but also for my other family members affected by FXS.
Second, I'm overwhelmed because of the outpouring of support from the FXS community....
Sunday, March 13, 2011
MIND Institute
Friday night, we had an interesting late-night call! Around 10:30 PM, my phone rang with an out-of-state number. I assumed it was a wrong number given the time of night, but turns out Louise from the MIND Institute was returning my email with a call.
I was able to call her right back, and we talked for about a half hour. It essentially boiled down to a couple things. First, they definitely would like to see not just Ayden, but also myself and Issac. Second, they are very interested in seeing us because of the 'family...
Some Words
It's really a joy to hear your kids begin to speak, but for those kids where there is a speech delay - well, let's just say it's about 100 times more amazing when you hear them actually start verbalizing.
I hesitate to make this post, because we've gained and then lost some speech before - but you never know this time! Ayden started saying a few words back in December, but after our family went though a car accident in January the words seems to disappear. Ayden definitely regressed a little, but it seems to be coming back...
Friday, March 11, 2011
Parent/Teacher Conferences - Winter 2011
We had the joy of sitting through our second parent/teacher conferences this past week. It's funny how I still don't feel old enough to be doing those, my how time flies. We are so happy with how well Ayden is doing in the ECSE program at school. I was so scared sending my three-year-old off to school on a bus, but I can say it has helped Ayden grow in leaps and bounds.
The ECSE assessment 'grades' by using a 1-3 scale. 1: Area of Concern 2: Making progress towards Expectations 3: Meets expectations. Ayden did show improvement...
Fragile X Clinic
It's been a week now since our official diagnosis. Even being prepared for the diagnosis didn't make me realize actually how much more there was to do for Ayden. To compound our list, we also had parent/teacher conferences at his school this week! First up though, FXS Clinics.
Mr Awesome and I decided after the diagnosis that it would be beneficial for Ayden to have him evaluated at a Fragile X Clinic. His current 'team' does an amazing job, and we try to stay consistent between school and home; however, we figure it won't...
Thursday, March 10, 2011
Ayden's Story
I've moved this post to it's own, separate page. I want readers here to be able to see where we were at diagnosis, and maybe be able to offer some hope or guidance to those that are going through the same thing.
Every child has a story, this is Ayden's. It's hard to know where to being, so I'll start at birth, and then continue to age 3.5 where Ayden was at the time of his official diagnosis.
Ayden was our first, my July baby. In some ways things were very difficult from labor on, but in others he was so easy. I had 17...