Miracle League Christmas Party

 Today we went to the Miracle League Christmas Party at DeSales University. The party was great. The food was awesome. The people who were helping out were amazing. But something special happened.

 We made a friend. Her name is Kaitlyn. She was adopted from Vietnam. She is 14. Her father struck up a conversation with us while we were waiting in line for balloon animals and I am so glad he did. Kaitlyn's mom passed away this past January. Her dad, Tony, is just  holding it together for Kaitlyn and her older brother.  Kaitlyn also has developmental delays and has trouble relating to other kids, but she latched on to Joy. And Joy was very good with her. She understood her and didn't shy away from her.
I felt so badly for Tony. But at the same time I felt I could do something for him and his family, or at least try to.
I got his email and told Kaitlyn I would send him the pictures we took and also set up a play date with both my girls. I am going to try and get their address and see if I can do something for them this week to give them a little Christmas cheer.
No matter what problems you have in your life, there is always someone who has more problems than you do.
Sometimes our problems weigh on us but ours are light - there are those who carry the world on their shoulders and have no one to help them with their burden.

 I am making a resolution to change that. I read a book called "the 13th Gift" and I highly recommend it. It is partly what inspired me. So you may hear from me later if I can get more information about this special girl and her family.
 Then another FIRST for Gracie. She got her face painted and turned into Rudolph the Red Nosed Reindeer. It was a very special day!

This is my beauty and her new friend!

Another Milestone

Gracie went to a classmates birthday party on Saturday at Bounce U. This is one of her favorite places. But something different happened this time.

Instead of leaving before the party was over, she sat down with all the other kids and had snacks and cake.

As I have said before, this may not seem like a big deal but for Grace it is a HUGE step!

She did all the things that the other kids did! Her little BFF Peightin came and from that point on they were attached- and played together! But the greatest thing was all the kids came up at some point to  say Hi! Her classmates are just awesome!!

We are thankful everyday for all the achievements she is making and for all the people that help her along the way. Even the little ones!!

More Christmas

This weekend while most other people were putting up their Christmas tree(singular)- I was stuck at our beach rental with a sprained ankle. It's been a banner Thankgiving weekend. First, Uncle Roger went Pie-less at the Thanksgiving buffet at the Hotel Bethlehem ( which aside from having no pumpkin pie, was not that great-but a least we didn't have to cook.)

Here are my last Christmas trees. The Behemoth in the living room that was given to us by Roger and Peewee ( and whom we will never figure out how they put it up in their house!!)

This is the tree in the "great" room - the only one that Chris helped put up BTW.

This is the tree in the spare room. It's the only one I'm not happy with because it's too dark.

And this is the final version of Grace's wreath which so far remains standing in her room,

I would like to figure out a way to transform my only talent at Christmas decorating into something that can make money. Any suggestions would be appreciated and considered . Enjoy the Holiday rush!

Kulp Christmas begins

Christmas begins right after Halloween at our house. It HAS to because of all the decorations we (I) put up. I used to work in a Christmas store where Christmas began right after Labor Day so I have acquired a talent for decorating trees. You might say my husband takes advantage of this.

Now let me be clear ( as the President always says) it was not my idea to put up multiple trees!! After annual visits (pre- children) to the Biltmore House in Asheville NC, my husband decided he wanted to be like George Vanderbilt, the man who lived in the Biltmore. Each year at Christmas they deck the halls at the Biltmore like nowhere else and the have tours at night by candle light- like it would have been in GV's time. It's one if my favorite places, but I digress. There is at least ONE tree in every room there- sometimes 4 and a huge 40 footer in the dining hall. So that is where our "tree-dition began. The first tree pictured is in Chris' office. The second one on the island in the kitchen ( alas, unlit).

This one is in Gracie's room. It was a challenge finding a way to put a tree in the autistic child's room. Last year she knocked it around. This year she hasn't bothered it because she LOVES the trees! So what do you put on an autistic child's tree? Stuffed animals!!

This  is a little one on our room that I just cover with a bag and put in the closet. But I did spruce it up this year a bit.

Joy didn't want a tree in her room this year 🙀because she didn't want to move her desk. So what did we do? Got a smaller tree and put it ON her desk😉. Now that I'm used to it I guess I gotta have one in every room .

I had to change the white tree in the dining room this year because Grace kept taking the ornaments off and they were GLASS.

So I took some of the larger ones from Joys tree that wouldn't fit and ta-da! New tree!

I just put up the tree in the spare room now. That leaves 3 to go.

I started writing this piece after Gracie had a meltdown. She went upstairs and was playing on the iPad when she started to cry like she'd been hurt. She was suffering from very bad gas pains but wasn't able to go potty. She was really in pain- screaming. Then our friend Christine showed up to pick Her daughter up just as Grace went the top of the stairs- threw something and screamed three times at the top of her voice ! I had to apologize to Christine as I tried to calm her and Joy saw them out. Sometimes it is just so hard.

The Roller Coaster Ride that is Autism

This is Grace when she is happy.

This is Grace when she is not happy.

Grace was not happy coming home from our house at the beach today. If you would have told me a year ago that Grace wouldn't want to LEAVE the beach house I would have laughed!

One year ago, Gracie would start crying when we were  still 30 minutes away and wouldn't get out of the car when we finally got there. Then she barricaded herself in her room and wouldn't come down from her room. It got so bad I talked to Chris about selling it.

Then she gradually got over it. She came down to the living room and eventually became comfortable again. Now she LOVES it there.

She was genuinely happy to be there. You could see it in her face. 

Then when she knew we were leaving it was like a storm came in. She DID NOT want to GO. 

She cried for an hour. I had to get in the back seat with her. You don't want to know the hell of driving with a screaming child and 3 dogs for four hours . (Chris got a taste of that tonight)

I don't know if she was just mad about leaving or had tummy troubles-or both because she can't tell me. She did use her device to consistently tell us (over and over!) that " I would like to do something else." In other words "I want to go back to the beachhouse you idiots!!!!"

I can keep calm for a while- to try to keep her calm. But then the little things will set me off-  tonite it was the dog. 

I guess it's harder because she is doing so well most of the time. She's a different person than she was a year ago. She likes to go to dinner now. This weekend she asked for dessert when we went out to eat! So now when she does go haywire it's more frustrating because I feel like I should know why it's happening. 

I guess the bright spot in our torturous drive tonite was that she was trying so hard to tell us what the problem was. I don't want to do what you are making me do. I want to go back. I want to do something other than what I am doing now!!!

Time Change. Yay.

Life after the time change is never easy. It wasn't with Joy and it really isn't with Gracie. 

Sunday when we were shopping she found a toy drum for babies and latched onto it. I tried to explain it was for babies to get her to put it back. No deal . A drum is a drum. Finally had to take it away. So she screamed. Just once. So we went to the books. We found a Mickey Mouse book with a pop up at the end of it. She LOVES pop ups! So now she was happy! SO happy ! She's so darn cute when she's happy! She loved it. I made sure I told her to be gentle work it- she loves books but she destroys them! All good.

When we got home she went up to her room and looked at it and played quietly. All good again. 

Then Chris went up to put her to bed--

And found the pop up part shredded on the floor. 

Autism Yay! I thought she really loved that book .

The next day I used the bath soap in a Minnie Mouse bottle. I got it for her because she now loves Mickey and Minnie. I told her not to open it because she sometimes opens bottles and dumps them out. Sometimes. I checked on her 2 or 3 times and all was well. When I went to get her out it was all gone.  I know- I should have known better. Oh week So there goes More money down the drain, literally. 

So I yelled at first. Then I took her aside and told her that I liked to buy her special  things but I would have to stop of she didn't take care of them. She just sat there then like she knew I  was disappointed . I know she understands everything, that's what makes these times so hard.

During these times my best friend, Susan, reminds me to look for the good in all things. I think that's part of the reason that God sent her to me. 

That's why I put the picture at the top. 

The other day Grace asked for help in putting up the table she uses for school work in her room so she could put up her pony toys and animals and play with them. On her own! Pretend Play. On her own. HUGE!

The Cupcake Crusader!

 The Cupcake Crusader struck again! Bringing sweet treats to helpless children who Mrs. Obama would deny the pleasures of a simple classroom party. How can you have a party with celery and carrots!? 
They said sweets were allowed so I jumped in right away! Then they said the treats should packaged individually in case the child did not want to eat theirs right away. So... bought bags at the dollar store and candy toppings 70% off at Michaels and dipped them in sugar so they wouldn't stick to the bags! The whole process of putting them upright in the bags took longer than baking them AND frosting them did!
So I have taken it upon myself to bring sweets into schools. I'd have a cupcake sale if I could!  
I told my niece Savannah that if I got arrested I would call her!
You never know! The year isn't over yet!

Joy's Art

Joy's drawings have been getting really good. She probably would have a cow because I am posting these but I think they are awesome! She draws all the time!

Most of the time I am so busy entertaining, chasing or working with Grace, I feel like I don't get enough time to spend with just Joy. But sometimes we share a movie or our new favorite show, Gravity Falls and its just all that we need. 

AND she's turned into a book-toting fangirl!!!!1 She's read 2 books in 3 weeks and was upset when Chris told her she had to put off her book till her tests were done this week. 

Lovin' it!!

Snuggle

Tonight was the third night that Gracie told me to lay down with her when I put her to bed! She smiled and laughed each time she told me to lay back down. I am liking this a lot! Big Smiles!

The Night Before Screwed Up Saturday

Chris had put Gracie to bed and I was putting towels  away upstairs. She was grezting about something so I went in to see what was going on. She told me to lay down on her bed with her. Then when I did, she laughed and snuggled in to me. She pulled her puppy over our heads like she does when she goes to sleep. I can't explain exactly how she looked. But there was happiness and affection- she was glad to be snuggling with me/! She made REAL eye contact with me! She connected with me. I felt her saying "I love you, mom" the way only she can say it.
I don't know where the road is taking us. I don't know when or if she will talk like everyone else.
I do know that I will be there if that happens- or if it doesn't.
Ups and downs. Highs and lows.
Gracie and me. Together.

Screwed up Saturday

This post is for Norma.

It started off like a good day. 

Chris and Joy said we were going to go to the zoo . Usually I her ignored when I ask to go to the zoo but it was a perfect day for it. So we packed up and went. 

Well, I guess everyone in Philly decided it was a perfect day for the zoo because as we got there they closed the parking garage!!( seriously who goes to the zoo in October?) We looked for a parking spot to no avail. So what now?

Go to Ikea( Joy LOVES IKEA!) Go home?Go to Peddlers Village's Carousel? I got an inspiration about a museum we never got to- The a Please Touch Museum-do I google it and it's a mile away! How convenient ! So we find it and there's a lot of people but it's not overly crowded. 

It started off well.

Then we went downstairs. Evidently Grace doesn't like downstairs- anywhere. Well, I tried what Grace's feeding therapist, Marcel, does- she makes her look her in the eye and says "trust me"- and it worked. She went downstairs and checked it out. Then something spooked her and she started to balk so I told her to tell me no- and we went upstairs where she played on the water section.

Chris and Joy checked put what we missed downstairs and came up. We started to go across the huge foyer to the exhibits on the other side, but Grace would have no part of it. I tried to get her to sit at one of the tables to eat but she threw off her shoes and tantrumed in the huge main entrance area. (Autism- YAY!)

Chris finally had to pick her up and put her down at the table.

So what set her off? I wish I knew . There were models of vehicles and one was a bus- so that was probably it. But she was able to walk through lobby to exit without a problem. Go figure. 

Then Chris wasn't happy because I didn't feel like stopping somwhere to eat. 

I thought I had a good change of game plan and we ended up wasting $$. 

I guess I was getting used to her being so good everywhere we went. Such is the roller coaster ride of living with autism.

Then and now. (subtitle: Finding a developmental Pediatrician)

Grace had an appointment with her developmental pediatrician today.
We have started taking her to Geisinger Autism and Developmental Medicine Institute in Lewisburg.  It was a 2 hour drive both ways. We drive that far because there are no good developmental peds in this area. You have to wait a year for CHOP and Hershey and others are closed to new patients.
SO how did we end up at Geisinger with an amazing pediatrician? Grace's first speech therapist recommend them to us, as they just recently opened up their offices. We were fortunate to get an appointment with Dr. Soares within a short time and he has been wonderful. He actually gives us input and recommends things to do for her. It was so hard to get any feedback from our first dev. ped. other than "keep doing what we are doing".
Dr Soares told us we were doing great with her. He said she is making great progress and he will be here to make sure that everything with school and her therapies goes smoothly. It's so comforting to find someone who actually looks at her and sees her as an individual, not just another case. I always got the impression with her previous Dev. Ped that she was just going through the motions: lumping her in with other kids.We are so blessed with finding the best people to help her. Most of it is from her aunt Angela, who knows all the best people in the field.
I  don't know what I would do if I couldn't find the right people to work with her.
           There have been so many changes. Just today, she asked for stickers and when I gave them to her, she said "Thank you." I had to do a double take. And she said it again when I asked her.
Such a small thing. But it was huge! I felt like taking out an ad in the paper!
Then she had an awesome feeding session when she voluntarily asked for goldfish( she put one in her mouth and we thought she was going to chew and swallow it) and asked for more pizza flavored pringles to lick!
So many little things. So many HUGE changes. It's going to be a wild ride!

Miracle League LV Trick Or Treat

We took Grace to the Trick or Treat Event that the Miracle League holds each year. She had a great time!
She caught on right away and was going up to all the stands herself! It was so well put together and decorated, it's a shame it rained out the last hour. But the rain didn't seem to dampen anyone's "spirit"!
The Miracle League does so much for the kids. We appreciate all the "angels"who helped Grace enjoy her first year with them. Who knows- maybe next year we will be with the cheering squad!