Overwhelmed.

Received the Neurodevelopmental Evaluation from Children's Hospital today. IT's so different to  see it on paper than just talking about it.
They did a test called the Screening Tool for Autism in 2 year olds or STAT. Out of the 8 parts that they tested, Gracie failed all but one. Failed." A total of 1.5 or more for 3 year olds is considered to place the child at risk for autism."
Gracie's score was 2.5.
Sometimes I feel like I have to focus so much of my patience on Gracie that I have none left for Joy Lin and I explode when I ask her to get me light so I can see to change Gracie and she brings me a FLASH LIGHT!

We are going to Florida for a family vacay this week and I have to say I am scared. I am not sure what will happen. I know we will get through it all together because God wouldn't have sent us, me, these  blessings if he didn't think I could handle them. I just could use a little .... what am I saying? When I look at that smile, I have everything I need.

No words necessary.

Good and Bad.

Today started off good. We went to CHOP for a check up on the tubes in her ears. Everything went fine there. She didn't even gretz too much in the doctor's office.
I stopped at the pet shop where we got Buca on the way home. Joy Lin and I always stopped there when she was little. Gracie loved the fish and the birds. She didn't know what to make of the dogs in the kennels.When we went to leave she gave me the sign for more so I let her take me where she wanted to go and she took me to a shopping cart, pointed to go in and we went back in.
Then when she was eating, she actually grasped the spoon by herself and fed herself a few times!
She likes to turn all the lights in the house on, so tonite I tried to turn them off and blocked her from getting to them, when she couldn't get around me she ducked down and went between my legs!

Then came time for bed. She took me to her coat before I was going to put her to bed. I told her no, we couldn't go out. So we went up to her bedroom. She wanted to go in for a bath, which would have been her third today. I said no. Then came the hitting. She hits herself HARD on the head. I tried to calm her down by holding her tightly. Didn't work. I ended up letting her take another bath. She was making herself hoarse by crying wildly. So I chose my battle. She seemed to settle down then. But 20 minutes later she tried to get out of her pjs and got fighting mad again.
So I ended up by putting on the third set of pjs for the night and bringing her into my bed. She laid right down, got comfy and went to sleep. ------- ?

So now I am so frazzled I am going to bed.

Special.

Diagnosis.

We took Gracie to Children's Specialized Hospital in New Jersey to get an official autism screening because it takes so long to get an appointment with a developmental pediatrician. So we spoke with a nurse practitioner, who just doesn't have the MD behind her name.

In short, they diagnosed her as autistic. Even if her behaviors were due to developmental delays, which we still think they are, she does exhibit autistic tendencies that should have lessened after a year in therapy. 

What does this mean? Mostly that she can get more services to help her get up to speed. I have no doubts that she will get up to speed. She is too damn smart for me! 

My brain is reeling about all we have to do for her now, but we have the best guide. My sister, Angela, knows all the ins and outs of getting the proper services, not only because of my supersmart nephew, but because she advocates for so many other kids and their parents, who, like me, don't have a clue what to do. But mama is the student now too

A lady behind me at Giant said it best I guess. She was watching Gracie and said how beautiful she was. She also commented on her getting out of  the straps and into the back of the cart and I said she does that with everything. The lady said thats because she is a special needs child. Their last child was special needs and she said she is smarter than her other kids. This was even before the "diagnosis.".I told Chris and he said how did she know she was "special". I guess you just do.

Joy Lin has been a good big sister lately. Last nite she finished feeding Gracie for me. Today she took her through one of those crazy play mazes at McD's. We met pappy, gram and Savannah for lunch. It was a madhouse because there was no school today and still, Gracie decided to go in and try it!!!! Joy took her from the bottom to the top and down the slide! And it was packed with kids! 6 months ago for Joy's birthday, we went to Chuckie Cheese and Gracie just shut down. And today she went into the fray!! and enjoyed it!!!
Also, we got her to take sips from a cup, without having to hold her arms down!
Now we are going to Childrens Specialized Hospital in Thoms River NJ on thursday for an autism screening. Hopefully, this will get her on the fast track to a developmental pediatrician if we need it or give me peace  of mind if we don't. I just want to make sure we are getting her all that she needs. So we shall see.

Big Week

WOW! Lots of things happened with Gracie this week! First off , Gracie peed on the potty TODAY!!! ok TMI but I was so excited. As she has been taking her clothes off all this week I caught her in the act of pulling off her pants and diaper and steered her to the potty. Sat her down and she knew what to do and did it!!!!!! She is amazing!
ALSO, Miss Trish and Miss Susan got her to drink from a cup!! I have not been so successful but she did it for them!!! She is eating with a boy about her age named Eric and she watches everything he does and he was drinking from a cup. She observes, then she does, when she is ready. They also got her to tolerate a lollipop! He also "talks" like she does and she watched him talk with his sitter. You can sometimes see the wheels turning. They seem to be on the same page developmentally, so it is interesting to watch!
Most days it seems like I don't get much done because cleaning has to come between feeding and playing with Gracie and sometimes feeding takes up more time than you would think but that is what I am here for and Chris will just have to deal with it.
Oh and why do all the challenging things with Grace happen when he is out of town. When my niece, Savannah, stayed over last sunday, she started her thing with undressing in bed and we had to redress her 5 or 6 times. Let's just say Chris' patience started to run out by the third try and he was conveniently out of town the rest of the time! But I got rewarded with the HUGE smile when I praised her to the sky for going on the potty. I guess that's a fair trade off!

This picture was taken before she figured out how to get out of he PJS without unzipping them.!

Chatting with Gracie

Last nite Gracie and Chris were going back and forth, making noises, "chatting" if you will. Well, it was a little bit louder than chatting but it was a crazy form of speech.. It is also funny as hell to watch. It first started before Christmas when she was hollering at Aunt Peewee and we all started hollering back in response. Now she is starting to do it more often. She looks so intently at you when she does it too, like she knows she is communicating with you. Miss Carrie Anne said this is just what we have been waiting for!

Lots of little things this week:
*She made great eye contact with Miss Trish in greeting her at Advent this week, then gave her a wave AND a HUG!!!
*She preferred to green beans to applesauce because of the texture of the applesauce. Who knew? Textures are going to be hard.
*We played together with playdough for an hour!
* I came this_close to a hug today. She was letting me kiss her cheek and she had her arms around my neck and kept putting her cheek to mine for more kisses. I could do that all day.

Diligence.

This year Gracie helped to open her( and other people's)  Christmas presents.  She needed prompting but she took an interest in it and tore at the paper. This might not be a big deal to most people but it was a big step for her. Last year, she didn't bother with them AT ALL. She didn't even touch the tree till it had been up for 2 weeks. This year, she gets into anything she is not supposed to!
I was all set to start the year on a positive note, but some odd looks at Christmas gatherings and questioning comments about her development put me on a bad path. But I am trying to transfer it into something positive. Gracie is NOT like every other kid. She has gone through things we can't even begin to imagine. Can YOU imagine what it was like to be in a crib with other children all around and be fed by having a bottle shoved in your mouth and left there till it was time to take it away? If you weren't able to eat what was in that bottle because of the hole in your mouth and it dripped out instead of going in your belly, well, that was too bad. Can you imagine?
She looks like a regular kid so people don't understand why she doesn't talk-Why she doesn't eat like the other kids- Why she wears a bib. They see that and that look at HER differently.
I know I should not let these things bother me... but they do. It's like when we were in China and whichever baby cried and the parent that walked around with it was the focus of EVERY eye in the place,chinese and foreign.
I didn't expect these kinds of challenges but I accept them with open arms. I wouldn't trade Gracie for another baby if I could. Chris and I can't figure out how you can go half way across the world, pick up something that doesn't belong to you, bring it home and love it like nothing you've every loved before. That is the essence of adoption. How can you NOT love her/him?
If you had told me 20 years ago, that I would adopt a special needs child from anywhere, I would have been shocked. I never thought I had the patience and diligence it would take to care for such a child.  But since Gracie, I have come to learn that I do. I am working on the diligence. That is this year's resolution. To give them both EVERYTHING they need to thrive. That is what matters. If other people don't see that is NOT what matters.
I am not perfect. (Chris thinks he is). I therefore, do not expect Gracie to be perfect. We will work through the ups and downs of life together, just like we have been even before she came to us... as a family.

I have said before that
I am writing this blog to keep a journal FOR Gracie of her advancements; the steps forward as well as the steps back. Joy's was on paper, Gracie's is electronic.  Some things will be easier than others but all will be worthwhile, because if I have learned anything this past year, it is to appreciate and VALUE all the great gifts we have been given because we don't know how long we will have them. I found out over the holidays that some of my more distant friends are creepers and do follow it That you think it is worthwhile to read amazes me, but I do appreciate your support.