Participating in the " Tri 4 Inclusion "

 On Saturday we joined in The Tri 4 Inclusion- A Triathalon for  Inclusion through Mykayla's Voice- an organization that helps special needs kids find inclusion in typical schools.

Kim Resh, Mykalya's mom and organizer of the event, was able to get us a bike to use in the event. A company in Silversprings Md brings the bikes to events like this just so they can be available to kids who need them.  The company's name is Bullitt but unfortunately I did not get his name. He said they don't rent them, they just have them available for kids to use when they need them, like if we wanted to use one at the beach. Just awesome.

The other special bonus that Kim provided for us was a volunteer to help Gracie through the Tri.

Her name was Leah- she's 18 and headed for Muhlenberg in the fall and she is amazing. She rode the actual bike part for us ( Chris and Gracie were unofficial- because we didn't know if they'd be able to bring the bike) She had actually participated in a Tri before ( as well as a marathon) so she knew what she was doing.

Joy and Leah then helped Gracie do the Run part of the race. 

The only part of the race that Grace balked at was the swim. It was too loud in the pool for her so we waited while Chris did the laps.

That is our Team Gracie finishing the race. It was all about finishing the race. That's all.

It was a great day and a great learning experience.  So many kids with different issues all being like everyone else for a day- with a little help from their friends. 

Gracie "graduates" Pre-School

Waiting in the wings with Miss Norma

 Gracie "graduated" pre-school today. Miss Norma helped her navigate the "ceremony" and she went up to get her "diploma" with the rest of her classmates. Aunt Peewee and Uncle Roger came to cheer her on. It was such a normal thing but such a big step for her. She was included just the way she is.
Mrs. Linda Reinbold, director of the Children's Learning Center, put together a really nice program that actually brought a tear to my eye. The showed pictures of all the kids when they were babies, in the beginning of the year and in their "graduation gowns".
I  must thank Mrs. Reinbold, and Gracie's teacher, Ms. Kathy and Ms. Felecia for doing so much to include her and allowing her to be just a regular kid.  I also want to thank Gracie's school Tss, Miss Heather, and her home Tss's , Miss Sharon and Miss Lindsay, along with the special ladies that guide them, Miss Rachelle and Miss Norma for all the time and talent they give to us!

First Miracle League Game!

 Today we had our first experience with Miracle League and it was AWESOME!!
We weren't sure what to expect with Gracie but she did so well. Before the game started, she INDEPENDENTLY
said HI to someone and asked me for water. She was even the first person to bat( YIKES!) But the angels helped her and she hit the ball! Everybody cheered and we tried to get her to run but she just took a nice stroll down to first base! Her first angel was named Shannon.
For anyone who doesn't know ( like me), each child is assigned an "angel" to guide them. And there are "head angels' who pitch and help swing. The kids get two times to bat and two times "in the field." They bat till they get a hit and do whatever they feel like in the outfield. Some play catch, some wander like Grace. But they all seem to have a good time.

It was truly heartwarming to see the kids get a chance to be like other kids. Gracie did all the things that everyone else did. She batted , went to the field, hit again. She came in early in the second inning and we went  to the playground. Even at the end they all lined  up to shake hand or high five and she went right down the line.
WITH ALL THE OTHER KIDS!.

 It may seem like a small thing- playing with other kids- going along with a different experience. But to Gracie and to us these are HUGE  steps! We are thankful to all the people who help make these games possible!!

Today is your birthday!!!

 Today, our Gracie Girl turned 6!! She woke up in her birthday suit (as usual) and came downstairs to find her birthday present!

 I got her a princess dress- because that's the only thing besides naked that she really like to wear!
WE took her to the Disney Store and they treated her like a princess!

I wanted to find a way to make the day special for her. Though most of our relatives were busy with their everyday lives and weren't able to come for cake,  we gave  her her drums and her dress and she enjoyed "shopping" at the Disney Store, where they gave her all her favorites;  a button, stickers and something that lights up!
She deserves for everyday to be special. All kids do but Gracie more than most. After all she went through, the rest of her life should be happy ever after. But it's not. It's going to be hard. So I will have to find ways to sprinkle fairy dust in her daily routine. I think I succeeded this year (don't know how I will top the drums). She REALLY looked at me several times during the day and smiled. So my heart tells me she enjoyed her day!

Gracie's 1st birthday invitation.

Before we get into details, Gracie ate dinner OUT at the diner WITHOUT NUTELLA last night!!!
I forgot the nutella!! Chris and I didn't know if we should just go or try it and stay. So we tried it. We got her chocolate pudding as a substitute, but she didn't really like it. But she ate oatmeal and applesauce anyway.

SO today we went to Gracie's first friend's party. One of her little friends from preschool, Elijah, gave her an invitation last week. Luckily, it was at BOUNCE U so I knew it would be ok. SHE LOVES it there so she was glad to go. She was hesitant to sit with the kids for the introduction video so she sat with Joy and I. Then when we went in she knew what to do.

Wether she knew it was different from any other day at Bounce U, I don't know.  Only 1 of her little girl friends was there and Elijah was the birthday boy so she just ran around on her own. She loves the big slide. Elijah's mom was awesome! She told me that when she asked him who he wanted to invite from his class, he really wanted to invite Gracie. Her little classmates are so sweet. They love her.

She didn't do so well when the party moved in for cake. She sat at the table with the kids for maybe 5 minutes. She was watching them to see what they were doing.They were blowing on kazoos and that got her attention and when I gave her hers, she knew what to do with it. But once that was done, she was done. She gave me the all done sign. I made her wait. Tried to get her something to drink. But it was too loud and too crowded. She gave me the all done sign  two more times with a vocalization .So  I said our goodbyes to Elijah's mom , who was really sweet and we made our way out with 2 cupcakes from Elijah's gram.

I think I was just as stressed as she was. Everyday I hope for her to be like the other kids. 

Sometimes, it just breaks my heart when she doesn't get to experience things like typical kids. But I didn't want to force her and end up in a melt down, so I thought it best to just exit without a scene.  But she should be able to sit and have cake, like the others. She has to work SO HARD for EVERYTHING. 

Anyway, she came home and relaxed a while but at the end of the night we had a full fledged melt down because I made her stop using YOUTUBE( she likes the drum videos) . We haven't had one of those in a LONG time. I think she was just over stimulated, and stressed because it was something new. 

Then I was stressed when we got home. We play off of each other. 

My baby girl deserves a break but we just have to keep working.

Amazing Grace, again and again

I am so blessed to have the family that I have. Because of my awesome, hardworking husband , we were able to get two beautiful daughters from China. Our oldest daughter is funny and smart( though she doesn't know it yet) and everyone has told me she truly is a Joy.
But our biggest blessing, ( and our biggest challenge) is our Gracie. Not saying that she is a bigger blessing than Joy but that we are blessed by her "specialness",because that is the best way to describe her uniqueness. She is whip smart. She is a great problem solver, in other words, when she wants something, she won't let anything stand in her way to get it.
Some days, we are not up to the challenge. But then we recover and then she always manages to bring smiles to the day!

Keep Moving Forward.

 This might not be an amazing picture to everyone. But it is to us.

 This is our Grace. Eating at a diner. Eating diner food. Food MADE AT THE DINER!!!!

 Again, you may think so what?  But after 3 1/2 years, this is a FIRST.

On top of that, she is using an assistive device to help her to speech, to help her be understood at school.

And she is learning new things everyday.

She gets excited when she does things right.

Her HI's and Bye's are becoming clearer.

Gracie Style

move over, Gaga. 

Working the hat.

Wearing TSS Lindsay's boots.

Ok, where's my horse?

everybody else has it all wrong...

mittens go on your feet!

Munching rainbow twirlers with Miss Marcel

Wingless.

 This little figurine used to have wings and a hand with a streamer of hearts. Until Gracie found it.
Now it is a symbol of Gracie to me. Wingless. Big Heart. Stuck on earth. "Timothy Green" if you saw that movie. Someone that just doesn't fit in. Someone I can relate to.
BUT sometimes she makes me soooooooooooooo frustrated.
She had a great day today. A great speech session. She answered alot of questions vocally! Great responses! She had a good afternoon session with her therapist, Lindsay. No outbursts of any kind.
Then I was cleaning up a special sushi dinner from Wegman's and I thought it was quiet but didn't do anything about it. Bad Mistake.
I went into the living room and she had one of her ( and my) favorite pop up books!!! and was ripping everything out of it - letter by letter. I got so mad. But I made her clean it up and throw everything away. SHE KNEW I was not happy with her. SHE KNEW she was not supposed to do that! SHE KNOWS EVERYTHING!
We had to put screws in the windows in her room so she would not be able to open them and throw things out of them!!!!
Some days I don't know what else to do.
She is so smart. I just with I could get into that brain and figure out why she does what she does.
That would make my life easier.