Monday, December 22, 2008

A great day, but...

Michael had a fantastic day today – he had his best day ever at school, he received his Project Lifesaver transmitter after school with no fussing, and he had a great time at his auditory integration therapy. So why am I so depressed? I feel so fortunate that we were able to get the transmitter, but depressed that we still really need it. I guess part of it is that we work so hard to get him all the biomedical interventions he needs, and we still have so far to go.

I keep reading stories of children who do biomed for a few months and have miraculous recoveries. Even if they aren't able to lose their diagnosis, they can mainstream at school and participate in family functions. I'm struggling so hard to find an appropriate placement for Michael, and he still has really bad days as often as good ones. I know I shouldn't complain, and I am truly grateful for all the progress we've seen.

It's so hard to read about children enjoying the holidays and knowing that I am dreading this holiday more than any other. Kids are supposed to like this time of year. And there are things that Michael loves – the winter lights, baking cookies, and spending time with family. But, he doesn't really 'get' the whole gift exchange thing, and is just as likely to melt down over a present being opened as enjoy it. And, even though he had a lot of fun decorating the tree, he won't let me turn the lights on to enjoy it. But, we take one day at a time, and it will eventually get better, right?


Petra said...


I get what you wrote here, I so get this.

For most kids (at least most kids that I know and hear off), getting better is a slow ole process. Yeah, a few hit the autism treatment lottery, but I do think those kids are the exception, not the rule.

And yes, the ups and downs can be hard to take (I definitely hit a low myself yesterday) - it's a totally 'eff-ed' up roller coaster we're on eh?

One day at a time, one day at a time. If you have records (that's actually one thing I am going to do today as I am still kinda in the dumps), look back at where Michael was at a year ago, or two years ago. And then think about where you are at now... I am sure there have been lots of really good changes.

As to not getting all parts of this holiday - it wasn't until last year that my Salamander (he was 9 years 9 months old then) 'got' the idea of exchange. That Christmas wasn't about a mad dive into the loot stash to rip everything open (regardless of whether it was for him or not), fling everything about and then have a huge meltdown as he didn't understand why some stuff wasn't for him, and oh, to make a choice as to what to play with first (and it's not like he's getting tons and tons of stuff). Last year, for the first time, he was able to wait patiently while another person opened their gift, was able to comment appropriately and then was able to open one of his gifts, and, drumroll, would play with that one gift for quite a while before WANTING to open the next.

Keep at it OK? Keep at it. Michael is making progress.. and he'll get there (where ever there may be..)

Renee said...

Thank you so much for everything you said. It really does help to know that I'm not the only one going through all these strange emotions! Thankfully, today is a much better day!

Petra said...

Glad today's a better day (and thanks for stopping by at my blog.. )

Girlfriend, these 'strange emotions' you are going through? I've seen them on pretty much every single autie mommy blog. We're all going through it...This IS a rough season for us. So many expectations, so many desires, so many wants.. and so much sadness as we know that, inevitably, we WILL fail to meet some expectation (whether realistic or not) somewhere..

Believe me, there have been years that I just wanted to push a Fast Forward button and jump from Thanksgiving to mid January. While I haven't had that feeling quite that strongly this year (and that's a first in 8+ years), it still creeps in at times...

It's that we are all expected to be 'holly, jolly' as 'it's the season'. Unfortunately (and I'm gonna be blunt here), tantrums, poopy pants, in store meltdowns, parking lot chasing scenes, sleepless nights, night terrors, detox behaviors, etc. etc. etc don't give a rodent's patooty that's 'it's the season." They stil happen and still need to be dealt with and still give rise to the same feelings of sadness and frustation for the moms. But as we all need to be 'holly, jolly', we end up repressing a lot.. but inevitably the bucket spilleth over and then.. watch out!!!

Hang in there, keep at it (and try to work towards your own definition of what makes this season special.. easier said than done.. still working at that myself..)

Renee said...

You are so right! I'm just realizing now how often I've 'smiled and nodded' the last few weeks when people are talking about how wonderful this time of year is, and how much fun the kids are having. I guess it really does take a toll.

And, when I do look back to last year and the year before, there is definite progress. And, if I were honest, I would have killed 2 years ago for the Michael I have today. It's just so hard to not feel jealous of the 'typical' holiday kid stuff.

Then again, when he hit milestones, we celebrate things that most 'typical' parents yawn over. I guess it's a trade-off, right? (OK, so I'm reaching, I'm trying to happy!)