Saturday, April 27, 2013


From the day after they were born, when they were together, Andrew snuggled right into Ben.  He got such peace from being near his brother.  He was such a miserable baby.  The funny thing, though, is that as soon as Ben had any sort of a say, he'd push Andrew away.    Ben really "appreciated his space", so to speak.   Didn't want too much cuddling or loving or snuggling.  And he'd push Andrew away.

That lasted until ...  well...  I guess when Ben became mobile, he had a lot more interest in his brother.  Andrew started crawling at 8 months and Ben not til 12 months.  So around their first birthday, Ben really started to love his brother. 

This love, it manifests in "Dives" onto brother, and brother sandwiches, tackling, tickling, trying to spoon feed brother, trying to wake him up.   Ben doesn't even want to leave his room in the morning unless Andrew's coming, too.

Andrew's love of cuddling Ben was dissolving around then, as then, as Andrew became more isolated as his autism took over, he really didn't even seem to notice that Ben existed.  

Only in the last couple of months does he glance over at Ben's tray, what Ben's eating.
And then the last couple of weeks, glances over at Ben, if he's being loud, or to see what Ben's eating.
And then this week: Smiling.  At Ben, when Ben sings or smiles or runs, or who knows what.  He sees Ben and he smiles, for who knows what reason, except that they're brothers.

Monday, April 22, 2013


It's been a while since I wrote.  I've written.  Whatever.  I need to be better about it, but am having a hard time carving out the time these days.

Andrew's services are about to increase - big time.

We received a Generation Rescue grant and are a month into that. Will be seeing a DAN doc soon.  Very anxious to get details about that and also anxious to actually go!

We petitioned our association for a fence for our wandering boy - and so far have lost.  But we have a few tricks up our sleeve.  That is to be continued.

Mostly, we've really been revelling in how well Andrew has been doing. There's a lot of appropriate playing going on, not as overwhelmed by crowds. He's looking a lot more when you call him.  (Or, when *I* call him), he's becoming more manageable outdoors.   He's happy, making so much eye contact.

I went to bed last night, after a wonderful weekend with him, including a very successful birthday party (and the first "holiday" in ages) that he participated in and seemed to really enjoy!  Most holidays lately I've cried, there's such a gap between where he is and where I want him to be.   But not this weekend.  It was beautiful.   I went to bed thinking, he's almost better, he's almost better...

And then there was therapy this morning. We had yet another assessment,   this one to build him a new ABA program, and she assessed him beginning at 0-12 months and he failed most of the questions.   Sigh.


I asked that this time I don't need to be told his "developmental age".   It does me no good.

Tomorrow is their 2 year appointment.   Michael is coming with me and I am very thankful for that.   We will be refusing vaccinations.  I know now beyond the shadow of a doubt that Andrew's "roseola" was a severe reaction to his DTaP.   And that when I, 3 months later, allowed him to have his MMR, I sealed his fate.   The boys will not be vaccinated, not until I come to a place where I feel like I can do so without any negative ramifications.

I don't spend a lot of time being angry anymore. Not at the doctor, not at medical science, not at anyone.  Hopefully that part of the grief process is over for me.   I've become much better at living moment by moment with my boy, demanding as much from him as I can, and enjoying his successes.