Monday, August 27, 2007

Taylor update and published card

Made it into the current issue of RubberStampMadness. Funny how fitting this article is right now. Going through all this waiting/teaching/tantrums etc. sure does test a couple. It's all okay. I should be in the next 3 issues of RSM if anyone gets a chance to check 'em out.

On to more important issues. I took Taylor to the doctor last week (for a rash which was probably roseola but I just used that as a reason to get in) and I ended up seeing my pediatrician's partner. Well--I swear things do happen for a reason. Of course I quickly dismissed the rash and moved on to more important topics. He ended up referring us to Children's Therapy Center in Waterdam Plaza and we have physical and occupation therapy evaluations scheduled in September. Speech eval. not till December!! Obviously kids have trouble speaking these days. That's okay though. At least the ball will start rolling a little sooner and maybe she can start those therapies. I'm not sure how much of those she'll really need but I'm sure she needs a little help. If I hadn't seen the partner I STILL wouldn't know about this place. Of course they can't diagnose so we will still be waiting for a label until Nov. 14 from Children's Hospital. That's how it goes folks. You need a complete evaluation and a diagnosis in order to get certain services. Thank goodness we can get the PT/OT evals done earlier though. We are also in a better position knowing someone who works with autistic children. My ABA therapy notebook is full of notes from this week. We are working on non-verbal requesting (pointing), responding to name, matching (which my kid is SOOOOO doing well at this), gross motor imitation, object imitation, self-help skills and I forget what else. We are in a unique position here. Most people don't have the help to get this started. We are lucky we know someone who is willing to help us so much. Damn lucky. She is coming up again tomorrow. I also called Early Intervention AGAIN today. They should be calling me back any day now to set up in in-home evaluation. I also called the welfare office on Friday to get a Medical Loophole form to get Taylor medical card. I guess that will cover Taylor's PT/OT therapies at the Children's Therapy Center if our insurance doesn't. I don't think it is based on need. That right there is very valuable information folks! Ya see--this is possibly gonna get really expensive and every bit helps.

Anyway, as far as home ABA progress goes----Taylor was resisting everything at first--really resisting. We went from trying to just figure out what she wanted to making her actually work for it. Lots of tantrums. We still have them but the first few days were brutal. She is resisting less now. She is even pointing at things-infrequently but it's showing progress. She is really resisting responding to her name. I can see the resistance letting up a little though. She is very proud of herself with matching and so am I! Funny how every little accomplishment is savored now. Be careful what ya take for granted.

Lemme tell ya---this kid hates strange places and strangers - restaurants especially. And going in doorways that are unfamiliar. No likie. We are working on it and it's very exhausting. I have learned really quickly not to give a crap about all the people staring. We also started back to the Little Gym today which is so good for her. She's not into following directions (can't really process directions) or much close contact (little girl came up to her today and she backed up and put up the elbow) but the running around is great for her. Baby steps.

I am going to continue to post all this info plus some fun stuff. All work and no play.....
I hope this information helps someone else. I know I've read blog after blog and it felt pretty damn good to know I'm not alone.

I'm off to bed. This is so exhausting. Never in a million years did I think I'd take the role of mother/in-home therapist but that is where I am and it's all good. Not all days are good but as far as the big picture goes---it's all good. After all---Taylor is lovin' the chocolate rewards that go along with therapy. She's my kid. My very bright, smart kid. One in a million that kiddo.

8 comments:

jen duncan said...

Congratulations on the publication Michelle! I love it!
It sounds like you're doing all the right things, and more importantly keeping a good attitude, with Miss Taylor. Thinking of you always.

Anonymous said...

Glad to hear that things are looking up. It is amazing how there is so much out there, but no way to find it unless you just keep talking to every person that you see--it's like every one has a tiny piece of info, but no one has the big picture.

Love the card, too. RSM should just give you a free subscription, so that they don't have to remember to send you free issues every time you are published!

Tracy said...

you sound very positive and that is huge. sounds like you're doing all the best things and you've got some help - and are going to get more. all good :-) i'm glad you're letting us know whats goin on.
and congratus on the mag. that's good for you too :-)

Babsarella said...

Congrats on being published, that is so exciting, and your card is terrific!!! Now I just need to find somewhere to purchase this mag...Michael's in my area does not carry it anymore! Best of luck with Miss T. Sounds like you have things under control. Good luck with navigating the system...lots out there, but not always easy to find!!!

Lisa Renéa said...

Michelle, so glad your being directed toward the information you need! Thanks for the update and congrats on being pub'd in the rsm!! Very cool card, i might add!

The Huge Spectrum said...

That is so cool Michelle!

Sue McGettigan said...

Congrats on the pub - fun card!

Keep your sunny side up, it sounds like you're making good progress and being really tenacious about finding the help that Taylor needs - tenacity goes a very long way in finding your way through the medical maze. T's a total cutie and hey - chocolate is a great motivator :)

Donna Layton said...

I love the card. Congratulations. Thank you for the update. I'm thinking of you and Taylor all the time. She is as lucky to have you as you are to have her. Your strength and determination are so admirable and your willingness to share all this on your blog has the potential to help a lot of people.