New "school" year for everybody.

Joy Lin started Middle School this week (sort of)  and Gracie started a whole new set of therapies. She still goes to preschool one day and does her equine therapy but she has started a new intensive therapy known as ABA( Applied Behavioral Analysis ). Most of the definitions of ABA I found were a little confusing but I think this one explains it in the simplest way.

"Applied" means practice, rather than research or philosophy. "Behavior analysis" may be read as "learning theory," that is, understanding what leads to (or doesn't lead to) new skills. (This is a simplification: ABA is just as much about maintaining and using skills as about learning.) It may seem odd to use the word "behavior" when talking about learning to talk, play, and live as a complex social animal, but to a behaviorist all these can be taught, so long as there are intact brain functions to learn and practice the skills. That is the essence of the recovery hypothesis--for many children, the excesses and deficits of autism result largely from a learning 'blockage,' which can be overcome by intensive teaching.

Typically developing children learn without our intervention--the world around them provides the right conditions to learn language, play, and social skills. Children with autism learn much, much less easily from the environment. They  have the potential to learn learn, but it takes a very structured environment, one where conditions are optimized for acquiring the same skills that typical children learn "naturally." ABA is all about how to set up the environment to enable our kids to learn.

It is an intense program of one to one therapies with 4 therapists also known as TSS or Therapeutic Support Staff.
These ladies are so great. We have one three hour session during the morning and another in the afternoon. That's ALOT compared to what Gracie has been getting. It's going to be a huge change but I think she can handle it. I really think she is ready for it. She seems to be seeking engagement with people. She is open to new things. And she is starting to think of new ways to get into trouble!!
She had her yearly checkup at CHOP last week and everything was good there. Her cleft repair is just great. The professionals she went to see all said we were on the right track with this line of therapy and didn't think that it would be too much for her. So I feel better about our new course. She has gotten great therapy up to this time but I just think that we should take advantage of her new adventurous disposition  and capitalize on it. She will be eligible for kindergarten next year !!!! But i don't know if we will be ready for that but by the time she does go, I know she will be ready.

First Day of Middle School!

New school year, new hair cut!

I read another mom's letter to their child as part of their school year tradition and I thought it was a great idea so I wrote one for Joy.

Dear Joy Lin!

Tomorrow is a BIG day. Your first day of 5th GRADE!!

It's so hard to believe that you are 10 and a MIDDLE SCHOOLER. We remember the first day of kindergarten, when you smiled and went off on the bus to a new adventure, without a look back! Did you know that I followed you to school that day? I don't remember if I told you. But I just had to make sure you got there ok! You knew what you were doing, you always did!

Now tomorrow you get your own locker. With a locker combination and you get a CHOICE of lunch ! Your running with the big guys now.

I know you aren't in the same class as your BFF this year. That's ok. You will see her and Emma. This is an opportunity to make some new friends to go with your old ones. 

The most important thing for you to do is be yourself!! From the time your feet touch the ground in the USA you have charmed everyone with your laugh and your smile and your willingness to talk to ANYONE. Don't let go of that now that you are getting  older, Be yourself and people will want to be with you!

I think that God puts people in our lives as gifts to us. The children in your class this year, your new teacher, they are all God’s gifts to you.

Just remember to treat everyone as if they are a gift from God and they will see that you are one of His greatest gifts too. We always said God sent you to us for a reason. That reason was that He knew we needed your uniqueness- the thing that makes you YOU. Your Joy. 

So Be Yourself. Be kind. Be brave and enjoy your new friends.

We love you more than anything else in this world.

Moving ALong.

I can't believe that school starts in 11 days. The summer went flying by. Joy Lin will be starting 5th grade on the 27th and it looks like Gracie will be starting a new "school" too. She will be staying at the preschool at Advent but she will also be starting behavioral therapy which will one on one therapy, Monday through Friday. I am so relieved to finally be getting into this program. Gracie is becoming much more open to new things and people and engaging in new activities willingly that I think she will be very receptive to this new therapy.

She said MaMa last week. She has said nite nite several times. She is starting to make an MM sound for more.
She has a long way to go but she has come such a long way! Our journey will take us on a new path soon and we'll have more exciting things to report.

10 years old!

It's hard to believe it but my little girl is turning 10 tomorrow. Seems like yesterday we just moved into the new house and got her referral and headed to China to bring her home.  She is so excited about her birthday that she volunteered to go to bed early tonite. She is so into holidays and birthdays( even if they aren't hers!)

She is growing into an amazing young ....girl. ( Lady is not a term I would apply yet.) We love her dearly. The only regret I have is that we weren't able to share her first 13 months with her. But we get to share the rest of her life with her! I named her Joy for a reason!

Equine Therapy. Gone to the horses.

Last week was our first time at the ranch for horse therapy, I call it. So I thought this week would be just more orientation. Nope. Grace sat on a horse for the first time. She was none to pleased about it at first.

It improved in a few few minutes , but till then , she let Miss Trish  know that she was not happy. But Trish turned her sideways to give her a feeling of rocking as they rode. Then, she turned her backwards to she wouldn't be afraid of what she saw ahead of her. Then it came time to turn her around and she was fine with it. 

Trish took her off the "pony" named Rex, for a short feeding session and when we took off the helmet( which was a problem last week) she actually reached to put it back on! That's my Gracie and by the end of the session. We even got a smile out of her.

Kiss Kiss

Today Gracie started to give kisses by pursing her lips! She came and found me in my bedroom, made great eye contact as if to say "Hey Mom", pulled me down to her and pursed her lips for a kiss!!! Words can't express...

She also had her first experience at Equine therapy today. She was totally ticked off by the helmet she had to wear and that set the mood for everything else. But I really think she didn't know what to make of the horses. So the plan is to go by her cues and see how she comes around to them. I think she will love it once it becomes familiar with it. But it's step by step. She watches and waits.

Gracie and Pappy on her birthday.

Also today Chris caught her climbing ON her crib and pulling the balloons in her room off their hooks.
Do they make gymnasium floor mats in designer colors? I don't know what else I can take out of her room. She needs a jungle gym and a bungee chord!!!!

Long time no post.

Wow It;s been a while since I posted. Things have been going very well with Gracie. She is engaging with other people much more!
But I will go more into detail on that later.
Right now I want to share a poem that my talented niece, Savannah Murphy, wrote about Gracie and her brother, my nephew, Jim.

Words- by Savannah Murphy


It's- It's there
It's right there
I want it
I need it
F-for release
But i don't know- how to

say
What I- I need
So I'll take your hand
And be your lead

...
You can see it
In my eyes
How I feel
If you try
But don't expect
More than that
Because no matter how hard
I try
My words wont fly
...

.........
But they don't need to
Silence speaks the loudest
And I am heard.


Right after I read that, Grace started to cry, like something hurt her and I couldn't make it better because I didn't know what was bothering her. Then I read the poem again, after I managed to calm her down and it made me realize how close to true this poem is.

I have two very talented, beautiful nieces and a smart, strapping nephew and I love all of them. And they love Joy and Grace. But Nana and Jim both have a soft spot for Gracie. Nana calls her " itty bitty".

~Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.

~ author unknow

 

A friend of Chris' sent this quote to him. He has a son with autism. I think it applies to Gracie as well. Once we can crack that little brain and see what goes on in there, oh the wonders we will find.

Animal Kingdom

(Be sure to check out the last picture of Gracie with Minnie Mouse!)
 Some online research said that Animal Kingdom was not the place to go with kids with autism. But that was not the case with Gracie. The park itself was much more relaxed than Magic Kingdom. The music was calming- it wasn't all kiddie chaos. She was able to stay in her stroller which was calming for her. We managed to get her on the safari ride because we were able to bring it right up to the ride. She sat on my lap with her Listening Program music on and watched the animals.

We were also able to get her into The Lion King show, again, wheeling her right up in the safe zone in her stroller. She was leery of this one because the theater was dark but managed to sit though the whole show. 

After that it was off to the Contemporary Hotel for dinner with Chef Mickey and his friends.  This was our first sit down dinner with Gracie. Normally we eat at restaurants when we are in the parks but we didn't do that this time. It was much less stressful to just grab things on the move. She did pretty well with eating and with having the gigantic mice and ducks and dogs come up to her. They didn't talk either, though, so it went pretty smooth.

The adults got a cocktail with an ice cube that lights up.

This is my favorite picture. I think Gracie's face says it all!

The Magic Kingdom.

Magic? Really.
Kids everywhere. Noise everywhere. Plus we had to take the monorail to get to the park. Gracie says, "whoa, this is a ride and i don't like it!!!!) Then it just got better from there. Chris says try the Carousel- it's outside. We get in line, Joy gets on a horse and Grace won't let me put her on a horse OR let me sit with her so we stood by Joy's horse. Strike 1. Chris says TEACUPS. We walk over and the noise from them and the race cars is unbearable so Gracie won't even look at them  on the ride.
Chris then tries  one more ride- the monorail type ride in Futureworld. Guess what? Half of it is IN THE DARK!!!! Finally, after that, we decide to leave Gracie in peace. We even go back to the hotel for some pool time for her! But we go back to the park in the evening. We go back to Pirates of the Caribbean land and everything goes relatively well.

The other thing we learned is that we could use Gracie's stroller like a wheelchair. They gave us a sticker that would let us take it as far as they take wheel chairs, where most people have to abandon their strollers right away. This was a HUGE help because her stroller is her safe zone.
We made it till close and went back to rest for another day.