Friday, August 31, 2007

Can she get any cuter?

I still haven't shared all the layouts I completed at the crop a while ago. This is one of my favorites. She's just SO darn cute.

Off to a hearing evaluation today and more phone calls. :) It's gonna be a caffeine day for me. Tired.

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.

Wednesday, August 22, 2007

A little funny and turning a corner

I thought this blog could use a little humor--hence the layout. lol. She's a doll!

We have turned a corner in this house. The "it's okay" corner. If Taylor is simply a bit behind or if she gets diagnosed with something else it's okay. It's life. We are implementing ABA therapy in this house NOW under the guidance of an angel who shall remain nameless. Honestly---it's kinda fun. We had the best time this morning. They'll be trying times but the good times are great. She is so funny and sweet and laughs like crazy sometimes. She has been sick for a few days too. She has had a fever and now has a red rash all over her body. Measles (surely not), Fifth Disease, who knows so we are in the house for a few days. It's some childhood funk. So--Amanda--if you are reading this thanks for the playdate invite but we'll have to pass. I don't think the other mothers would appreciate our attending and spreading disease. lol.

Thanks to friends and family who are so concerned about us. We are doing fine now. The initial shock of 'you need to get your kid evaluated. she's behind' is over and we are back to life. It's a short life and we will live it the best we know how. Love you all.

Wednesday, August 15, 2007

Good afternoon at playyard

There weren't many kids at the playyard today. It was calm and Taylor actually climbed on the slide. She also let another girl about 4 years old come up to her and Taylor muttered some sort of jargon to her but it was intentional. It was initiated by my kid. Maybe I'm just grasping but it felt good. It is a little hope. I'll be taking her around kids constantly now. I have to make sure part of the social backwardness isn't just a product of limited exposure to kids. The last time we were there it was wild. Maybe she is just overwhelmed by wild kids?? Please let that be the case.

Maybe we have a big speech delay coupled with a very shy kid? She has always had stranger anxiety. We have been working with her like two nutcases.

Regardless-----we are prepared to take this on no matter what it is. We are stronger than we've ever been.

This blog will be full of crazy thoughts and many ups and downs. Fair warning. I'll be grasping at every little thing too. I need hope.

ONe last thought----all you parents out there that let your kids watch the Wiggles. Well, watch out for all that hand flapping. Kinda makes you wonder if your kid is imitating or actually has a symptom. I'm just sayin'...... We no longer watch the Wiggles in this house. We no longer watch much TV of any type when Taylor is awake.

I'm 95 percent sure..........

that we are a statistic. A very heartbreaking statistic. The 1 in 150 statistic. A gut-wrenching statistic. A statistic I never EVER imagined would land in this house. A statistic that has ripped a world apart. A statistic that makes me cry at will. A statistic that means my daughter may never know the "normal" joys of life. A statistic that makes me hate the other mothers at the park. A statistic that is so unfair I can't even imagine ANYTHING worse. A statistic that keeps a light from going off inside my daughter's head that would help her talk, respond, look, socialize normally ,etc. A statistic that means possibly no ballet/gymnastics etc. - speech/occupational therapy instead. A statistic that means so much. One small word, one horrific heartache------

AUTISM

It's here. Taylor is exhibiting all the signs. I've had a weird feeling in my gut about this for a little while--a mother's feeling, a nurse's feeling---you know those feelings. It would explain so much. So many social difficulties. A reason for all the meltdowns in normal social situations when things get too "close." A reason for loss of words. A reason for virtually no speech. A reason for constant movement. A reason for hand flapping when uncomfortable around other kids. A reason for constant screaming on an airplane. A reason for her being so behind the other kids--kids younger than her. A reason for not wanting to be held close to your chest. Now talk about heartbreaking. Every selfish bone in my body is grieving over that one. A reason she goes to sleep without any protest. A reason she was totally miserable around all of her cousins and completely content as soon as I removed her from the situation. A reason it's always seemed "difficult" around here. A reason she won't pretend. A reason she doesn't "show" us anything. A reason she didn't point before age 2. A reason she won't look when I point something out to her. A reason she went to the other side of the room completely away from other kids at The Little Gym. A reason when you call her name she almost always won't look at you. A reason for so many things.

So, I have a call in to Early INtervention who is supposed to call me within 10 days to schedule an evaluation within 45 days. We also have an appointment at Children's Hospital to get her diagnosed. Wanna know the best part??? Insurance doesn't cover behavioral therapy. Early Intervention is free. Children's is not. Soooooo, any additional therapy or visits at Children's is out-of-pocket. First thing we are probably going to sell is Mark's car. Early intervention does provide therapy but odds are she might need more. We will find a way.

DEAR GOD PLEASE LET ME BE WRONG. PLEASE. I BEG OF YOU.

Please don't call me. I can't bear to talk about this right now. I just can't. I'm not sure how Mark feels but I can't talk on the phone about it yet. I'm just struggling to make it through the day and I know I have to get past this feeling to do the best for Taylor. This is so not about me but I feel so damn selfish right now. I'm so pissed off, sad, depressed, angry, hateful, heart-broken. You name it. We are all feeling it.

I know you are all saying "wait for a diagnosis." Well, it sure feels like autism lives here and it's real right now.

So, pray for us or do whatever it is you all choose to do. Hug your kids today and thank God for them.

Saturday, August 11, 2007

5 more!











These layouts are all Mark's side of the family. We took a trip to Boston in May and Mark's parents visited us last month. If you want to know any of the products I used feel free to email me. There's too much to list.
I definitely enjoy scrapping the non-posed moments the most. More natural and just a better representation of everyday life.
Have a lot on my mind right now. Thanks for visiting.




Tuesday, August 07, 2007

another bubble layout


I have so many pictures of T with bubbles I just couldn't resist doing another. Fontwerks circle stamp, Creative Imaginations epoxy stickers, Fancy Pants "sweet" rub-on, etc. I used the Bo Bunny flexible ruler to make the wave design. Picked it up at the crop last weekend. I think Scrapbooker's Dream still has some in stock. She ships anywhere and charges actual shipping in case you are interested.


Monday, August 06, 2007

lots of new layouts comin' to ya










I went to a sixteen hour crop on Saturday. I'm still tired. :) I ended up finishing fourteen layouts and 2 cards. I'll share a few each day until they are all posted. Some I like - some are just "eh."








Gotta post and run. If I don't shower during T's nap I don't shower and that's just not good for anyone. Oh--before I forget--I posted some new links to the right for those of you who enjoy bloghopping. Lots of talent on that right-hand side. Purple Onion Designs is a retail site but even if you don't buy stamps you must check out the gallery she has posted. It's fantastic.








Wednesday, August 01, 2007

Cards



Made these a while back. Never posted them for some reason. Lady and bird from Character Constructions and little girl stamp from Paperbag Studios. Papers are Foofala and Making Memories ledger. Used a Crafter's Workshop template to color in the swirls on the birthday card. Used colored pencils to shade everything.