Thursday, July 3, 2008

Sufferin' through Autism Sux Week

UGH! The headline says it all. She has been in her zone, on her planet for the last week. When she does come into our world, she has been really aggressive. It often comes in the form of kicking me. I have some lovely bruises to show for it. I have always felt blessed cause she wasn't one to hit, bite, etc.- well, I can hear the gods laughing at me. I can't begin to tell you how many times I have cried this week. I know that it is just a rough patch, but whenever we go through these times, I get scared. I am afraid of losing her into her world. I have read many stories of girls with ASD who talked until age 5 or 6 and then became non-verbal. We have worked so long and hard to get her into our world and it just seems sometimes she has to retreat. I am thankful that she comes back, but fearful that one of these times she won't.

Most days, I think her ASD isn't that bad. I guess cause I see her at her worst & at her best. As she ages, it is becoming more & more evident how different she is. My nephew is here for the summer. He is 8. He keeps asking "why won't MM talk to me?", "why won't MM look at me?", "why does MM ignore me?" and most heartbreaking- "I don't think MM likes me cause she won't play with me". How do you explain autism to an 8 year old? I am on the hunt for a book that puts it in simple terms and will sit down and talk at length with him. I try not to answer him in front of MM cause I don't want her to know she is any different. I just don't know what the right thing to do is. It just makes me sad that even children are starting to notice how "odd" she really is.

Part of the reason for her being so "off" is she is off schedule. Even though she goes to ESY and a mom's day out, it just isn't enough. She needs long school day with lots of intervention. I try to do as much as I can, but I can't do it all- her hours of intervention, work, keep up with house, groceries, laundry, etc... I have never had a super hero outfit & guess I never will. ***sigh***

The other part of the reason is somehow all of the specialist appointments have come due this month. She hates to have her routine interrupted, let alone it being for the doctor! YIKES!!!

Eye dr went well- eyes better than in April, keep up the glasses, no patching at the moment, see you next April- WOW 9 months!!! Can't believe it. Of course return if any changes.

Saw the physiatrist today- not so good. She can either be really positive or super negative. Today was negative nelly day. It didn't help that MM was in full on tick mode. She made the same noise almost the whole appt along with the shoulder shrugs & hand flapping. Her fine motor skills are still so lacking, her balance was very poor today, her tone is worse in her hips, etc, etc, etc. Sometimes you just get to a point where you tune it out. There were some bright spots: She needs new DAFOs cause she has outgrown hers. This is the first time EVER she hasn't made it a year on them- most kiddos make it 6 months. She has gained & grown like a weed over the last few months. She also definitely called her gifted and said I need to fight the school for a 504 for her now. She said she falls into the rare category of disabled but gifted! All this while she was so out of sync today! That really made my day.

We are supposed to see the immunologist, but I think I am going to reschedule. We also have our 5 year exam with regular pediatrician and am not looking forward to the vaccine fight. I hope it isn't that big of a deal, but am ready either way.

Vacation is on the horizon! It starts a week from Sunday, the week of the 13th! Won't be going anywhere, just some day trips to Pigeon Forge. She just can't handle going any where right now I do just want to try to do some "normal" family things though like the water park. We will see...


Warmly, Renee said...

You sound like a really nice person. I may have some information for you that has definitely helped other parents of children with autism. I have an idea of how challenging it can be, the stories are amazing.

Anonymous said...

good stuff. You MIGHT like this.

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