Trick or Treat!

What an exciting day! They've been looking forward to dressing up and trick or treating for weeks...and they've probably had a month's worth of sugar in one day!

We've been building our collection of dress up clothes over the past year, so they actually got to choose costumes, and of course L went for the trusty old unicorn. I thought she'd choose one of her princess outfits, but I guess she associates the unicorn with trick or treating from last year. G chose this cow costume, which even moos. He wore it all day long, even to school. He wasn't interested in changing into his regular clothes, even though it wasn't a dress up day in school, and I figured it wasn't worth the potential confusion and distress of forcing the issue.

The day started with breakfast in costumes, a party at daycare (including trick or treating through the building, and doing a few songs for the treaters), and ended with trick or treating in our neighborhood (and then a few special stops in the van). They came home with lots of treats, sampled a few for bedtime snack, and fell asleep pretty quickly!

Adventures in sleep deprivation

These two decided last month to share a room, not too long after G started Kindergarten. I was so thrilled that they wanted to be together, that I agreed...and it's better than L waking up her baby sister! Most nights, they decide they need to share a bed. It was just a few months ago that I believed that this would NEVER be possible, all they did was fight. So, seeing them snuggled up like this is extra special. I am so thankful to see them forming a bond together. Of course they still have their fights, but which siblings don't??

While the regular early mornings have done wonders for getting a more consistent sleep routine working for G, I'm not home free yet! G still has the occasional really late night, nights when his mind is just working too hard to wind down to sleep, or he and his sister just can't quit playing. Thankfully they do pretty well at staying in their room and playing quietly. Last night both girls were up at 4 a.m., and didn't go back to sleep for a good long while. L was upset because her Pull-up leaked all over her Princess PJs, and they were "ruined" & "destroyed." Her baby sister is cutting another tooth and wakes up screaming at 4 a.m. every few nights. I'm tired...and grateful that everyone is peacefully sleeping right now so I can get to bed early!

Making a mess

I don't know who have more fun today, the kids or their dad...but it was pumpkin carving time this afternoon. What a sticky, stringy mess emptying out pumpkins is, but G was in there helping out (wiping his hands very frequently of course). L seems to be a little under the weather, but she was busy sketching away on her pumpkin. G wanted a scary pumpkin, so he instructed his dad to carve lots of teeth in the mouth. These pumpkins have been sitting in our garage for over a month waiting to be carved, so everyone was pretty excited today when it was time to make jack-o-lanterns!

The road ahead

I'm encourage, drained, and apprehensive about the learning that I engaged in over the past two days at the first annual Asperger Manitoba conference. It was encouraging to learn about research projects that are going on, and to get some ideas about our next steps in building on G's strengths and developing his areas of difficulty. It gave me hope to see many young men who were only diagnosed in their teens and early twenties celebrating their uniqueness and their gifts. It was discouraging to hear that diagnosis is still happening much too late, and that there are so few services and supports for these kids and their families.

There is something that is so healing about being able to spend time with parents who share similar experiences. It was so great to have our child development worker there...to chat with her in between sessions. She has been such a gift to me, and to our family. As a mom with a child with AS, there are times when you just need to have people in your life who get it...who live it.

So, now that I've learned more about potential future outcomes, more about the importance of comprehensive assessment, more about the importance of appropriate (assessment and research based) interventions across settings, and more about the AS perspective, I had a new road to embark on... it's time for me to explore more assessment so we can have a complete profile of G's strengths and difficulties, it's time to learn what specific interventions can help him to build on his strengths to address his challenges, and it's time to become a political advocate.

A little more on political advocay... kids with AS are being underdiagnosed, misdiagnosed, and being diagnosed much too late. There need to be more effective screening tools. There needs to be more awareness within the medical community about this profile. As is the case with autism, the research says that appropriate, research-based, cross-disciplinary EARLY intervention makes all the difference in terms of positive outcomes later in life. There also needs to be more support for kids and families who receive this diagnosis. All too often, families get a diagnosis, a little advice, and then are left to do their best. The system is operating in a reactive manner right now...diagnosing, and then providing very limited supports or interventions until further problems arise (and they will arise without intervention, and even with intervention). This is not acceptable! Our children deserve more from us!

So, if this issue matters to you.... please call your MLA, send an e-mail or a letter to your MLA, do the same with your MP, and talk to people. If everyone who reads this post can take one minute to do one action of advocacy, and can encourage another person who cares to do the same, we can start to make a difference.

On the upswing

Since this guy started Kindergarten this fall, we've had our fair share of struggles...lots of regression, difficulty controlling emotions, sensory issues...as he made the adjustment. I'm wondering, though, if nature didn't deal us a nasty coincidence. It turns out that he's also had an ear infection lately...and there seems to be a correlation between infection and autistic behaviors in him. This isn't the first time we've experienced this hindsight insight, but it's so hard to know when he's really sick because he just doesn't seem to experience pain until its really bad! He's had strep throat and not complained of a sore throat. So, if he complains, we take him in right away, and it's always something. Every time we see a regression in behavior, lots of emotional outbursts, less social interaction, I find myself wondering if he's sick, or if it's just part of a cycle. I hate to be overly paranoid and take him to the doctor every time he sniffles or acts differently, but I also worry that he's going to get really, really sick one of these days, and we're not going to know.

How did this happen?

It really feels like just yesterday that she was a newborn. I'm not ready for her to be just about walking, playing the piano, and getting into my tupperware cupboard (all signs of impending toddlerhood). I kiss those chubby cheeks and soft little hands & toes as often as I can...too soon they will be all grown up.

She'll be a year old in just a few weeks, and I'm still in denial. It's not that the time has gone by too quickly, there have been plenty of days in the past year that have felt pretty long...it's just that she's the last... I'm not going to miss the nighttime feedings, the fussy days, or the many, many diapers. Each new stage, though, has been a bit of a goodbye...knowing that I'm not going to go down this path again has made me cherish it all just a little more. Now hopefully I'll feel the same way about the terrible two's ;-)

I've finally jumped on the bandwagon

Blogging is not new to me...I've been following blogs for quite some time, and have been thinking that my roving & distant family would probably quite like it if I kept a blog so they could keep current with the kiddos. I record the life moments that matter, the ones I really want to remember & capture for my future, for my kids' futures, in my scrapbooks...but there are many times when the details are gone by the time I'm ready to create. So, hopefully keeping a blog will encourage me to journal more often about those moments.