Thursday, April 19, 2012

Ryan Gosling/Adventures in Extreme Parenting

I LOVE Ryan's no secret.  I stumbled upon another blog called Adventures In Extreme Parenting (   I love it.  She has two boys on the spectrum, and she's hilarious.  She does a post every week that involves a picture of Ryan Gosling, and she adds a caption and/or others add captions.....they are GREAT.  I highly recommend checking some of them out if you have a child with special needs....even if you don't!

Monday, April 16, 2012

A setback?

This past week has been extremely difficult.  I think more on myself than Macie, or Daddy, or Emma.  I know that I bring on these "episodes" myself, and I tend to over think, over analyze, and dwell on things I can not change.
Last weekend I noticed Macie doing a lot of sensory seeking.  When I say sensory seeking I mean:  chewing things, climbing (more than usual), "zoning out", stimming more (rocking, staring at her fingers, spinning).  I thought I was just over thinking things, but then I got the dreaded phone call from her teacher.  She was asking me if we had made any major changes at home, or if Macie's routine changed significantly.  I told her "no" to both questions with a lump in my throat the size of Texas.  I say it all the time, but regression is my biggest fear with Macie, and this last week it seems like she is regressing back to some of her earlier behaviors.  I can't put my finger on it, but something is going on with her.  I went to wake her up from a nap one day last week and I got the blank stare.....the one where it seems she doesn't know who I am.  She doesn't get upset, she doesn't push me away.  She just stares with no expression on her face.  Are they seizures?  I've always wondered.  From what I understand, kids with autism sometimes also have a seizure disorder.  They aren't necessarily the seizures you might be thinking of (where they shake, and thrash, etc.).  They can sometimes just be a temporary "zoning out".  They aren't dangerous, just a bit unsettling and I am not even sure that's what it is.
I too have been in a "funk" for a bit.  As Emma is developing, and talking SO much, saying her ABC's, counting to 10, forming sentences, having conversations with everyone, I find myself sad for Macie.  She is struggling to communicate in every way.  She doesn't use sign language, she's still struggling with PECS, and she is still struggling with her receptive language.  We got another report card last week for Macie, and she is meeting, and exceeding all the goals set for her except the receptive piece.  She is making progress, just not the "expected" progress.  With her not being able to communicate effectively she gets frustrated very easily, and it's hard to calm her down and teach her what she needs to communicate- she shuts down.  It makes me very sad to know that she probably has a lot to say, and she can't.  I want to play dress up with her, have picnics, and do all the things with her that Emma is loving right now, but we can't!  She's very resistant, and withdrawn right now.  Emma tries so hard to help her by bringing her toys, food, water, etc., but Macie either gets mad, or ignores her.
We took both the girls to Airtastic on Saturday.  They both loved it, and had a blast running around, bouncing, sliding, etc.  There were two separate occasions that I ended up in tears.  They were situations that had to do with Macie, and she had no clue that either situation was even happening- that's good, but I was aware, and it was just a reinforcement of  how behind she is socially.  I don't know that she will ever have the ability to make friends, and it just breaks my heart.  I want her to have friends' and experience all the great things that I did as a child, and all the great things that Emma is experiencing.
It's so hard trying to be "tough", and not show my real feelings all the time.  I keep a lot of it in because I know that my mood affects Macie sometimes.  The "experts" say that you go through a grieving process when your child is diagnosed with autism.  I agree with that 100%, but I don't believe that any parent who has a child(ren) with autism ever completes that process.  I keep thinking I am getting through it, but then something happens and I go back a step or two.  With autism there is no closure, no answers, no cure, and it's frustrating.  There are so many ups and downs.  We certainly celebrate the small things, but we are realists, and we are human therefore we also grieve the unknown.