Tuesday, September 11, 2012

Nobody ever told me it wasn't supposed to be this hard...

Hello there, again.

It has been a while since I have written. Not because I haven't wanted too, just because I simply did not have time. We had a very good Easter though. The kids loved their baskets - Aidan gets everything Spiderman these days. And my Jillian, of course loves her Princesses. It was a nice, quiet, mellow day. (I chose to have a memory lapse for the noon to 8 pm permanent sugar crash the kids had from waking up at 6:30 and diving into their baskets...........) So... it was nice and peaceful.

I have been busy getting myself ready for a trip to Texas this week. For 5 days my baby girl and I will be in, or near where I spent a portion of my childhood. We fly into Houston early on Thursday and will see my older brother that night, then Friday we are driving to San Antonio to see my best friend Niki and her family. Her adorable baby girl is turning 1 on the 19th! And her party is Saturday. (I cannot believe it has been a YEAR already!!!!!!!!!!) SO - my sweet Jillian and I will be there Friday and Saturday, and we head BACK to Houston (a 3 to 4 hour drive depending on the traffic, if I remember correctly...) and will spend the night again with my brother on Sunday. Coming home on Monday night. Phew!

I hope Jillian will be okay on the plane. I am bringing things for her to color on, and gum. She LOVES gum now. And *I* have to keep MY cool on the plane for her sake. (And I know I have said this before, but I REALLY hate to fly!) I of course already had my "before I go on my flight" plane crash nightmare. This one was intense too.

Anyway... I have all these meetings starting to get my baby girl ready for kindergarten in the fall. It is amazing all the hoops you have to jump through. But I feel like I am finally getting a handle on some of her core issues. Do I have a darn clue how to help her through them yet? Not really. But finally gaining the ability to identify them has been a huge thing.

And I still struggle with all of this. Sometimes I feel like I am very alone with it. A couple of weeks ago my husband just "decided" she was not Autistic. And he went on this long rant about how she is "not" autistic. And I just want to curl up into a ball and cry. (He has realized his error, or at least stopped going on about it with me anyway.) I did not want this. I did NOT want to be right when I realized what I was seeing, and what it was called. But I know I am. Her doctor confirmed it. Her therapists have reconfirmed it. And some days I wish like crazy I could just "fix" her. But I know it doesn't work that way. Some days I get such intense physical pain because all I want to do is take her and hold her - and just make it all okay for her.

Then I watch these shows about Autism - and I know that things could be so much harder. I mean - my sweet baby girl IS verbal. She is not as evolved with language as her brother (who is 14 months younger than her) but she certainly does well.

Tonight she got "stuck." I don't know what triggered it this time. But she needed to go to the bathroom, and needed me there. And then would. not. go. And she needed me there - but would not go. Leaving her in that moment creates an hour or so of crying - not leaving traps me into a 30 or so minute cycle. Sometimes I just don't know which choice I should make. I want a third option.

She doesn't "stim" like many autistic children do (hand fidgets or body movements) - but she WILL vocally do it - about once a week or so these days. The other day she got stuck - saying in a very specific tone "cha cha cha cha cha cha cha cha cha" and this went on, and on, and on - by about the hour mark no one in the house could stand it anymore. I tried getting her to do something else, I tried threats... I tried what felt like everything. I got her to whisper it for a bit but then she got louder again. Even my baby boy had his hands over his ears. And I just felt a bit lost.

And now I have forgotten why I even went this direction with this entry. Now I remember: today my little guy went to his preschool (he goes 2 days a week now) and this is the preschool that Jillian was going to. After I took him to his classroom one of the ladies at the front desk commented on how "easy" that was - undoubtedly referring to the routine everyone went through for me to leave Jillian there each day. And as we talked - it became apparent to me that the way I drop Aidan off - is the normal way. And she kept telling me how easy he is for them, and she used the term "like night and day."

And I realized something - no one ever told me it was not supposed to be this hard - when it came to things with Jillian. She is my first child. So as I go and do the same things with my son - I see what is "normal" - and I realize all the things I WISH I had caught onto earlier with her. The year we went through where she was impossible to keep in clothes. The hours and hours of screaming when she should have been sleeping. The repetitious speech, the total obsessiveness, the peculiar quirks .

I just feel a little stunned sometimes - when I have a realization like this. I never knew any way other than the "hard" way. I did not know it was anything other than "normal" - until now.

Well, on that note I am exhausted! I will be around though!

Posted Date: : Apr 18, 2007 8:11 AM

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