Big Girl!

Gracie starts pre-school on Tuesday and today and yesterday she stayed dry ALL DAY! 

Yesterday we even went to dinner and she stayed dry the whole time! 

She appears to be getting it. She was an angel the whole day!

I can't wait for school to start for her!

Creativity by Joy.

This is a little creation of Joy Lin's.  She used polymer clay to make this version of her OC- Original MLP Character-Charm or Charmy.

She added her own cutie mark.

and Pegasus wings. I think we are going to refine them and sell them! Brony Con 2014 here we come!

Going out. Or not.

We tried to go to dinner at Red Robin's because it was a nice day and Grace had a good day at home. Tried. 

She seemed fine when we sat down- there were ceiling fans. She ate, with a few noises so I put on her headset because it is loud there. 

After she was done eating, she started to gretz. She pointed to the balloons so we got her one. She proceeded to let it go. I started to take her out and a waitress asked if she wanted another and got her another. Then she tried to let that one go but I blocked her and that ticked her off. She cried so loud I had no choice but to take her out. She cried outside when I sat down to wait for Chris and Joy. I have her all her props and nothing worked so I let her cry. I thought a cop was going to come she was crying so loud. No tears.

Finally Chris and Joy came out. We walked back to the car in silence. 

All this after insurance denied her all the ABA coverage she needs because she is doing "so well." 

We wasted $50 on dinner no one enjoyed. Chris and I were mad in the car on the way home, and a revelation happened when we got home. Joy took it upon herself to be the one to get Grace  out of the car. Big sister steps in to help m. It was awesome. (This⬇is Joy, btw- her OC ( Original Character for the uninitiated Brony)

I am still mad. Am I mad at her? At God? At the universe? How the hell am I mad at a 5 year old autistic child?  I find this maddening after my midnight guilt trip last nite. 

I can understand how some people would decide not to take their autistic children out. People staring. Eyes boring into the back of your head. 

Some days I can handle it. Some days... Not so much.

Patience. Or the lack thereof.

I try so hard to be patient with Grace. She was up at 4 am this morning . So by 3 pm she was melting down. I walked her through that. We got her out and went for a ride to the shops at the Sands.   She did really well there for a while then melted down again. So Chris and I picked up some crappy movies at Redbox because we figured we were in for the night with her. I put her in the spa and she calmed down. She loves to be in the water. 

So I was getting her ready for bed, and I was giving her her pm bottle( as Joy always says -"don't judge me!) She always bangs her head against my chest after this- I thought I wasn't going to get one tonite and then she walloped me hard. I got mad at her and yelled. Now it's midnight and I can't sleep because I got mad at her and sent her to bed without a kiss goodnight. She has been and continues to go through so much and...

I just ask God every night to give me patience and to help her to be normal. Is that bad?! Who am I to get mad. I think the banging is something she can't control when something is so good because she does the same with her Nutella.

Patience. Sleep. Help needed, Lord.

Life with Grace. By Joy Lin Kulp

Joy Lin participated in a sibling support group with a few other girls her age who also have siblings with Autism. Over 6 weeks they got to know each other and shared thoughts and complaints over what it feels like to have a brother or sister who looks and acts differently from other kids. I thought posting it online might be helpful to other kids like her, as it was to me when I read it.
The first page is about Autism in general.
She writes: What is Autism? Autism means that kids think, learn act and do other things differently than most people. People may think that Autism is way different, but the only difference is how their brain works."

The Second page says:

Meet my sister, Gracie. She has Autism. We have alot in common and alot not in common.

First that is what we have in common- We both don't like dark, crowded places.She has fits and I just get 

uncomfortable."

THe third page: Things we don't have in common. Gracie likes the Wiggles and I don't.
                        Also she likes soft music and Michael Bubble (Buble), and I like music, today's hits"

The next page is in regard to Gracie's therapists.
"Having a sister with Autism is kind of hard. When the TSS's (therapists)  come, I feel a little burned up because they're always there with Grace and they have fun with Grace so, I feel a little left out."

The next page:
            "But I never ask. I am afraid to ask. I am afraid they are gonna say no or I'm gonna mess it up.
               Also, I am afraid

I particularly like the accurate portraits of myself and Grace on the page above.  Thought the way she drew Gracie writing on the walls was very creative.
IT says; "Sometimes I feel "in charge". If my mom goes to the bathroom and she says 'Joy watch Gracie' I feel a
little worried because is she does something she isn't supposed to, I will get blamed for it."

The last page is a family picture.
"Having someone in your family that has Autism is sometimes/days really hard!
When Gracie "isn't feeling ok" and I help out I feel pretty awesome!! Because my parents get happy because they're happy."
I am happy when Joy plays with Grace. She can be so good with her. I just felt like sharing her pictures and words to show that it's not easy living with autism. But it also shows "Ohana". from our favorite movie ( about Gracie)
Ohana means family and family means nobody gets left behind or forgotten"

This is my other favorite Stitch quote that fits just as well.

On the road to Brony Con!

This is Gracie in the car with all her toys and stuffies around her. This is how autism travels. 

motemWe are headed to Baltimore for Brony Con! Woot Woot! I know you are going to ask.  What is Brony Con? Brony Con is similar to Comic Con- ( a convention of comic/movie/tv geeks) but its for Bronies! Ok now you ask what is a Brony? Brony is the name super fans of the Tv series My Little Pony - Friendship is Magic. And we are not talking 4 yr old girls👀. They are older "kids" and alot of them are GUYS! They get their name from  BRO+ pony = BRONY. Seriously. 

So we are taking our Brony to the convention because I am the best Mom and I got the tickets for my best girl in February( they were on sale ). We were going to wait till we got there to surprise her but I couldn't wait anymore and there is soooo much stuff I thought she would want to prepare .! Joy has been into MLP since she was 3 and the show has aged with her/ it present good role models for girls her age. It has great characters and catchy tunes and its been consistently good from a mom point of view.

This is Joy's pony alter ego, Charm, which she made up and hand drew. She makes videos of them and has over 500 subscribers to her pony you tube channel!!!!!! So we are serious Bronies !

Bronypalooza!

We all got an early start and headed to Bronycon. I had to give Joy some of Gracie's melatonin because she was too excited to sleep.

Once we got there and registered we headed for autographs( we only got 2- they were $20 a piece!!!) but we got Princess Celestia ( or rather the lady who voices her). It was nice because they give kids special treatment( because most of the attendees are NOT kids. 

Chris didn't believe me About Bronies. There were thousands of 'em! Tall, short, large, small. Most of them were dressed up too. I have pictures on my other camera. Needless to say , Chris told me I could gladly be the one to take Joy back later on 😏. Gracie was sooooooo good again. She lasted 4 hours and even went to the vendor market which was insane! Finally she had enough though but she found a new pasttime- going up the escalator AND she sat still for a glitter tatoo!

So a good time was had by almost all !

And Joy came home with a new friend!

Rainy day.

Last day of VBS. Grace is a little off because of two busy days of chauffeuring Joy to film class. But she is hanging in. She seems to love coloring with the other kids. While all the other kids were getting rammy , she was devoted to her coloring!

Some days are harder for both of us. You don't appreciate how hard a simple thing like dropping one child off is until you have to do so while shepherding Gracie through puddles in a driving rainstorm, forget her favorite stuffy, and have almost no gas in your tank and a dead phone battery. 

Some days are harder than others .

 Only one thing is certain. You gotta love her.🌻