Monday, May 23, 2011

Journal entry from 2005, or What I Knew Then

I was browsing through some old files yesterday and ran across this would-be journal entry (I didn't officially keep a journal but occasionally jotted things down as I thought of them.  Actually that's not much different from how I operate a journal now).

Whenever I talk about our Fragile X diagnosis, I usually stress that it was shocking to me because I didn't believe anything was really wrong with the boys.  I tell people that I was sure they would outgrow whatever was slowing them down developmentally and I thought everybody was just being crazy cautious.

Then I found this note I wrote on November 21, 2005.  Evidently I have blocked this out of my memory.

My dad told me recently too, that he remembers me telling him around Christmas time, the boys' first Christmas when they would have been 10 months old, that I was worried they had autism.  I don't remember thinking that, much less telling him.  I guess I didn't have my head buried deep in the sand, after all.

It's important to keep notes and journals.  Write down what you're thinking.  You have no idea how much you'll forget, or how valuable and astonishing what you are thinking today might be in 5 or 6 years.

The boys had their 9-month check up last week, and they are growing well -- AJ was 19 pounds, 3 ounces (exactly what Aliza was at 1 year!) and Zack was 17 pounds, 4 ounces.  They are both growing so fast.  Unfortunately they aren't progressing otherwise very well, they should be sitting up well and starting to try to crawl by now, and they aren't at all.  So since last week when I became panicked about that, we've been working with them a lot and AJ can pretty much sit up now.  He falls down though after awhile, he hasn't learned to remember to continue balancing himself, after a minute or a few minutes, he forgets, and he reaches for something, and falls over.  Zack can't sit up at all yet.  We are working with him, but he just doesn't balance well yet. 
So Vicki thought they would benefit from a therapist, who will come over and talk to us about them, and will look at the boys and evaluate all their motor skills.  She might set up a weekly appointment with us, to keep up with their progress until they are walking.  That would be nice, I'd appreciate the help, because right now I'm frustrated that they aren't progressing on their own very well, and I'm worried more than usual (I always worry about this) about them being "normal".  When they were tiny, it was a good 3 months before Zack really focused his eyes, so I spent the first few months of his life worrying he was going to be slow, or blind, or something.  And then it seemed like Zack was raring to go, he rolled over first, and seemed more mobile, so then I worried that AJ was going to have cerebral palsy or something.  The thing is all these things are more common in multiples, so I'm very worried mine won't be normal, mine will be the ones who have problems.  Now that AJ is sitting up, I've shifted my worrying to Zack again, and the possibility of his physical problems.  I also worry that they don't pick things up and put them in their mouths.  This is good in that, if they don't chew on toys, they're less likely to be putting bacteria in their mouths and getting sick.  But at the same time, if they aren't picking things up and putting them in their mouths, they can't feed themselves.  They are great with being spoon fed, they open their mouths enthusiastically most of the time.  But if I put a piece of solid food in their mouths, they make faces like I'm poisoning them, and they spit it out 10 times before it finally has pretty much turned to mush and it stays in.  It's funny, this is the opposite of Aliza, she wasn't interested in being spoon-fed, she only wanted to eat what she could pick up and put in her mouth herself.
So I should probably make a list of things to talk to the therapist about, including the sitting up and crawling issues, and the feeding issues.  They just aren't like their sister in a lot of ways, and while I know every baby is different, it makes me worry they aren't "right".
They do babble a little bit, Zack does moreso than AJ.  So that's good, although I wish they did more of that too.  Zack babbles some actual sounds, and AJ just sort of hums and grunts, but it seems to have a rhythm to it, and he kinds of responds to us talking to him that way.  Zack is almost musical, AJ is more like a caveman.


Funny, I don't remember being this worried, their first year.  I do remember that Zack didn't focus his eyes for quite a while, but I don't remember it going on for so long.  When tapped to remember something from their first year, my memory has rose-colored glasses.  Aside from the sleeping issue, of course.  I remember not sleeping.

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