Deeds, blankie, and beautiful flowers
The past two days I have been enjoying the freedom of not being in classes and ignoring the fact that I should start packing things up for the move. We have been playing a lot and one of our favorite places to go is Thanksgiving Point. We have a pass and go often. During the winters we went to the dinosaur museum and now that the weather is getting better we are enjoying the gardens. Two days in a row and we have gone and enjoyed the Tulip Festival. It involves a lot of walking so it wears the kids out. I love it, but on the other hand it wears me out too since I’m chasing them.
Only once in the past 2 days have we lost tabs on Deeds. You would think 3 adults (Grandma, Great Grandma, and mom) would be able to keep track of him. I turned around after grabbing a diaper for him and viola, he was gone! We found him in the bathroom. Apparently he heard me say that’s where we were going and he just kept walking when the rest of us stopped.
Next week I’ll need to get back to reality and start boxing everything up, but it’s been wonderful to spend time with the kids without feeling like I needed to study or do homework. Enjoy the pictures.
I also want to give a big thank you to the donations that have been trickling in recently. We celebrate ever dollar and are so happy to see the goal getting closer and closer. Thank you!
Today I wrote a guest post over at Many Hats Mommy’s blog about why we decided on a Service Dog for Deeds. Check it out!
We are thrilled to finally be ready to auction off these beautiful paintings that Artist Joseph “Surrealgod” Trask has donated. They are so beautiful and we are more than thankful at his amazing generosity. Deeds is in love with the autism one. He wants it on his bedroom wall.
All proceeds from the sale of the paintings go directly into Deeds custodial account to help get us to our goal for his Service Dog. We are getting so close and we are very optimistic that this will help get us closer. All of these paintings are one of a kind so please help us spread the word.
The Two Sparrows and the Fake Plastic Trees are all 10 x 10 inches and the Autism painting is 16 x 20 inches.
The Two Sparrows
Fake Plastic Trees
I have found it hard to blog here recently. I know I have a lot of excuses about being busy but it really boils down to the fact that Deeds has been hard to handle recently. I hate being negative on here but sometimes autism kicks me and it’s hard to hop online and look at the positive. I was talking to Caryn from Living with Logan, and she said I needed to let everyone know both sides of our life… the happy and the hard. So I wanted to fill you in on a little of our week last week.
Here is the blog post I had on our family blog about one little day we had…not the best day, not the worst… just one day:
Oh Autism, how you vex me at times…
Today started out pretty normal. I got up and helped Jer get the kids ready for the day and then headed off to School. I was excited for the day because I was going to have lunch with some of my “Heart Sisters” (other women that developed Paripartum Cardiomyopathy). I loved the last time we got together. It is so nice to be able to talk to other women who are going through the same thing. That deal with raising kids and having a fraction of the energy you once did due to a bum heart… anyway… I was so excited.
We rushed up to SLC after JD got off the school bus. He was pretty good in the car on the way up. We talked about how we were going to lunch and we would go play at a park after.
First problem, we were late so the last ones there. We walked up to the table with strangers at it and JD went berserk. I handed off Gwen and took JD out to the front. The bigger he gets the harder it is for me to pick him up or control him. After who knows how long (felt like an hour) I finally get him to walk to the table without screaming (third try), but the minute I sat back down he started up AGAIN. I was so upset as I realized that it wasn’t going to happen, and that an autistic meltdown was going to change our plans. I wish I could say this is rare but recently these meltdowns are getting worse, especially in public. I think it is a combo of him just growing up and school break messing up his schedule.
My awesome Heart Sisters offered at this point to ditch Mimi’s Cafe and head over to the Chick Fil-a because there was a play area. That was magic, and JD played the entire time while we were able to chat and I got over my embarrassment of the Cafe episode. I feel like we are at a stage with him where we are tightrope walking between Autism and Spoiled. A lot of his behavior is because of the Autism. I know for a fact that if we had been the first ones at the table and everyone else came after it wouldn’t have been as big a deal. I’m not saying he wouldn’t have cared… but it would have been a bit better. I don’t want to push him harder than he can handle, but I want him to fit into society and us catering to his every whim isn’t the way to do it. We reach a point, like at the cafe, where we have to just cut our loses and realize plans have to change. We have missed functions with family and friends due to JD having a “Bad Day”.
He melted down again all the way home. We watched my cousin play soccer for an hour and he was great, I guessed it was just a bad afternoon… till he flipped out as we were getting in the car….and an hour and a half later he is still screaming and flopping around on the floor.
I think we will all be going to bed very early tonight.
Sorry, sometimes a mommy has to get it off her chest and I feel bad being negative on his blog we use for fundraising. Thanks to my awesome friends that made lunch still work out. You guys are amazing.
I love my boy, I cherish the good times because of the hard. Weeks like this one where every day is worse than the last can make it hard on this mommy to be positive. I want to thank my awesome hubby, Jeremy, for blogging for Deeds once this week while I tried to recover.
A few months ago Bobbie and I decided that it would be ok to show JD how to play the PlayStation. We figured he was coordinated enough to play Little Big Planet. It is a fairly basic game in concept but he is not able to do all the combination. It took him a little while to use the left joystick with his left hand and use the ‘x’ button to jump with his right hand. Before he would use one hand for both actions.
He can now do that but the few other combos he still can not do on his own. So, he usually asks to play the game, but that entails myself playing for him while he watches and directs me in sometimes a frantic manner by yelling, “GO BACK!” or “GET THE COINS!!” The best part of the game is when he complete a level to what JD calls the giant tv — which is a screen within the game that shows your score after each level — and he takes the control from me and say “dance little man dance.” Since the controller is motion sensitive he can tilt it and the character moves as JD use the joystick to make the character bounce around.
He can do a few of the really basic levels so those get set up if I have to step away for a moment. Oh also, Bobbie gets out of this activity by saying that only dad can play the game, but it works so that he does not play it all the time.
This morning we did play before school for about 20 minutes, but before that happened he woke up and started talking about getting the key and unlocking the doors and to get the cats out. It took me a few minutes to realize he was referring to one of the levels we have played only once and I believe it was on Sunday, what a memory.
The latest issue we had with JD was when he was with Bobbie at Costco and he got away for 20 minutes, so we are still counting down until we can get the dog for him. Since JD has such a great memory we got the idea to take him to the airport the week before to get used to waiting inline, meeting the front desk agents, seeing security and the bag claim area. We are hoping that will help him be calm when he goes to the airport and that he will ask to go back.
We also are so close to reaching our goal and we thank everyone for that, but if you are feeling generous you can still help us out by just donating on the site or do some shopping on Amazon through this link here and we get a small percentage of that.
This busy mommy is finding it hard to find time to blog right now so I sure hope you will excuse the lack of attention. I’m dealing with finals this week and next and then we are moving mid-may. I love moving because you get to de-junk and reorganize your life. I hate moving because, well you have to de-junk and reorganize your life. :-)
In the next few days I’m going to be posting some awesome things that were donated for Deeds fund-raising on eBay. I will make sure to post the links and a blog kick off to let you all know about it. It feels good to be so close to our goal, but donations have almost stopped coming in all together. We refuse to get discouraged. We have till October and we can DO IT!
Deeds started back to school today. Right before the bus came he found an Egg on the new Angry Birds Seasons game on his iPod and then begged daddy to let him take it to school. Once on the bus he calmed down but it was the first time in a while he wasn’t excited to just get on and head to school. I’m sure the minute he gets off the bus this afternoon he will be begging me for the iPod so he can pick up where he left off. I love my quirky boy.
Saturday afternoon Daddy had to go up and cover the University of Utah Red and White game. We decided to head up as a family and then drop daddy off. Once we found a parking place I braved the crowds with both kids (sans stroller) into the stadium. Deeds freaked out when we first got under the stadium and it was really loud. He calmed down when we came out onto the bleachers until I tried to get him to walk up the steps. Once he finally started to make his way up I found the 3 closest seats and set Gwen down and turned around to motion for him to sit too. He FLIPPED OUT. Lots of screaming and flapping I finally pointed out that his seat had a 3 on it and he walked right over and sad down. I love it when things like that work.
I snapped a couple of pictures and then Deeds took the camera and so most of these are Photography ala Deeds:
Much to my surprise Deeds was pretty good during the game. Gwen on the other hand was a nightmare. Cute but not a fan of the entire event. I would consider taking Deeds again to a large sporting event but little sister will be staying with a babysitter. It was easier for the 10 minutes daddy was able to sit with us but little lady is not a football fan. No matter how cute she looked.
Deeds wanted to sleep in his jersey however, so I believe that’s a positive.
Three months ago one of a parents worst nightmares happened in our home. Deeds was badly burned by a pot of boiling water and macaroni. You can read more details here. That night and the weeks that followed were very hard but we were so touched by the outpouring of love and donations we received for our wonderful guy. I was looking at him yesterday just amazed at the amount of healing and how amazing he looks now. I can not believe that it was only 3 months ago. The medical bills are still trickling in, it is amazing to me how expensive it all was, but the care he got was worth every penny.
Day before the burn at his 3rd birthday party
Sitting with Sock Monkey and Blankie 2 days post burn eyes swollen shut
Three days ago at the park
Same day as the park, sporting his shades
The other day an ambulance passed us with its lights on. I often forget how great Deeds memory is. He got all excited and babbled about how it was going to the hospital, and how he rode in an ambulance. Doped up on morphine, more than most adults could handle and he still remembers that ride when they transported him to the burn unit. Amazing little man. He still has some bald spots from the burn that we still aren’t positive if they will grow hair again, and his hand and face have some scaring, but he is a very blessed little boy.
In other news yesterday we booked the rental van and flights from Salt Lake to Ohio for the service dog training in October. We now have the hotel booked, van reserved and the flights purchased. ITS REAL! I am so excited for what this working dog will be able to do for Deeds. The seizure alert, search and rescue, tethering, and so much more… it’s worth all the fund-raising and waiting. Thank you for continuing to share his story and helping us finish up the fund-raising process. It also feels good to be so close to our goal!
Yesterday morning Deeds chanted “Criss cross applesauce” over and over again. It was driving me bonkers because I didn’t know where he heard it or what it meant. So I decided to pose the question to my twitter posse and they didn’t fail. I got 4 replies letting me know it was a common way for them to teach the kids at school to sit “indian style” on the floor. Thank goodness for twitter. :-) Thanks guys.
I also want to give a shout out to those of you at Kids on the Move that might read the blog, we MISS YOU! Multiple times we have had Deeds freak out for a specific therapist that he hadn’t seen in a long time. He will scream every time someone drives by and run to the window asking for you guys. We will hear him chant for Mark, Alyssa or Kimber OVER AND OVER. We thought keeping him going to the music class would help but not having you three especially come to our home has seemed to rock his little world. We want you to know how much we appreciate all you have done for us. I know without a doubt that Deeds would be a very different child no without your help. Thank you from the bottom of our hearts.
My mind is overflowing with info from the symposium on Autism at the Utah Valley University, until I can sort through my notes and digest all of it I am just going to pass along this gem:
For those of you in Utah there is a great event coming up next Wednesday, April 20th from 6pm-7pm in Lehi. There is childcare provided and I’m attaching the link for the flyer for anyone interested in getting more info.
An Evening of Hope: Celebrating autism and faith in our community.
- Reverend Tom Goldsmith
- Rabbi Ilana Schwartzman
- Brandon Gunnell, Isaac’s Dad
- Special performance by Eric Stoker
Looks like it will be a good event for all religious backgrounds. I’m hoping to be able to make it out.