Wednesday, June 26, 2013

Dream a little dream


Dreams, we all have them. Not the dreams that happen while we sleep, the dreams you have for yourself, your children, your friends and family. For most people, the sky is the limit. I grew up raised by loving parents who constantly reminded me that I could do anything I wanted to do. How wonderful is that! Think about it.... we are born into this world with a HUGE blank canvas and it's up to us to paint it full of all the wonderful things life brings to us.

As Cole has become more vocal about his wants, needs and his dreams for his future, I'm realizing his canvas won't be painted with as many colors as most of us. What do I mean by this? For most, we have endless choices and opportunities in life. We can make it what we want. We are capable and God has blessed us with the skills we need to do these things. We have a gigantic Crayola crayon box full off beautiful colors to complete our canvas. For Cole, he was handed a crayon box without an array of yellows and purples (he doesn't like those colors anyway). Cole looks at his crayon box and he thinks it's perfect (which it is) but the rest of us look at it and see parts that are missing, opportunities he will never have.

I can't stress enough that Cole is very happy with the Crayon box given to him. He doesn't know anything different and in fact, he thinks he can paint the same canvas we have with the limited colors in his box.

Just yesterday, he told me he will drive my truck when he's 16. Why wouldn't he think that? He sees the neighbor kids getting their licenses and driving around. He knows you need to be 16 to drive. And he's 100% sure he'll be doing that. After all, he's been driving our lawn tractor for the last 6 years with perfection. Why would a car be any different? The reality is, there is a 99% percent chance he never will. Cole has very limited ability to reason, recognize safety issues, understand cause & effect; let alone sit through driver's ed training and pass a permit test. How are we going to explain this to him? Especially when he sees Connor drive. :(

And earlier this week, Cole and I had an interesting conversation. There is an adorable girl in his class named Megan. Cole adores her (see the picture of them at field day). Cole said to me, "You and Dad went to school together, right?". I responded, "Yep, we did." Cole replied, "You got married and have a house with kids. I will marry Megan and we will be together. We will have kids." And he jumped up and down in excitement. Of coarse that's what he wants to do, that is what mom and dad did. I know Cole can and will have a girlfriend. It's the house and kids part that breaks my heart. Again, the reality is Cole will never own his home and he won't be a father. Don't get me wrong, I pray every day for this not to be true, but acceptance is part of the "grieving" process. And if you recall, the day we received this diagnosis, the doctor said we will grieve this like the death of a child. He was right. You never get over it. You accept it but you don't get over it.

Earlier in June, Pat, Connor and I were up in Brainerd for Connor's 10U AAA traveling baseball tourney (they took 2nd- woot woot). We arranged for Cole to stay with family and at the respite house while we were gone. We had an awesome time and really enjoyed our quality time together. During one of Connor's games, the 12U teams were playing on the adjacent field. It happened to be the Blaine team so I watched a bit during our warm ups. It was fun to see how much bigger those boys were and how much more developed they were as players. Then it hit me... Cole could be one of these boys. And it was a huge reality check. We can't even bring Cole to watch part of Connor's games. And here are boys his age, pitching the ball 65-70 MPH and making diving catches in the field. Pat and I grew up as athletes. We can't help but wonder what could have been for Cole. At 12 years old, he's 5'6" and 130 lbs. He's been strong enough to carry me down the hallway for two years. His dad started 4 years as a D2 college football player. The doctors think Cole will be 6'4" and he is one solid, strong, intense boy. Imagine him on the football field or parking a baseball over the fence!!! We'll never know. He wasn't given all the crayons in his box so he could try.

That is what makes this hard. I wish Cole had the CHOICE in all of this. If he chose never to drive a car, buy a house, get married, have children or play in one sport I would be 100% ok with that- IF IT WERE HIS CHOICE. But it's not.

We wish more than anything that Cole had the biggest box of crayon colors in the world to paint his canvas with. We are doing everything possible to give Cole the tools he needs to add colors to his box. And thankfully, he's done very well so far. We started out 10 years ago (as of July 1) with what felt like a small handful of grays and black crayons. I still remember Cole getting M&Ms for just sitting in the chair at speech for more an 1-2 seconds, and the goal of getting him to say "I want" seemed like a pipe dream. With years of incredible hard work, Cole has added an array of beautiful colors to his palate. And the picture he's painting is one of the most beautiful things I've ever seen.




Here are some fun things I wanted to share- be sure to check out the video and attached photos. I think you'll have to copy and paste the youtube link.

* Cole had an awesome trip to the doctor this spring. He had to get caught up on immunizations. Cole was so brave and for the first time EVER, we didn't need 4 people to hold him down or sedation to give him shots. He said he was going to get shots like a big boy. And did he ever. The nurses came in, gave him shots in the arm. Cole didn't even flinch. Afterward he hopped off the bed and told them, "Thank you, I did such a good job!"

* Cole's dentist, Dr King, retired this month. Dr King has been outstanding at helping us get Cole through dental exams. It's taken YEARS. At the last visit, Dr King told Cole he was retiring. It took Cole a while to process this. After Dr left the room, Cole and I finished up and walked out. Cole was walking ahead of me and stopped at another patient. He tapped Dr King on the shoulder and said, "Cole's going to miss you. Can I have a hug?" Everyone around was smiling ear to ear. That's my sweet boy.

*We got all of the damage repaired in our home!!! For those of you who don't know, we received a one-time grant to repair damage Cole has done. This included new sheet rock (backed with plywood from floor to ceiling), a completely new bathroom, new doors (he had slammed them so much they opened into the hallway and had cracks), a special "calm room" in our basement for Cole and some other things. It turned out perfect! I put a picture up of what Cole's walls looked like when we took the wall padding down. WOW!!

*The video is of Cole at his spring concert. He loves being in front of a crowd and waved to everyone he knew. He even has a small solo. :) He sure looked cute in his back to the 50's clothes! Copy and paste the link, it's worth it!

http://www.youtube.com/watch?v=Qgla6ZbBIy4&feature=youtu.be

*Finally, he got a new push mower. Sounds less than exciting, right? Not to Cole. You would have thought we took him to Disney. He is a grass cutting machine and when our push mower died, we had that new one in less than an hour. ;)


Thank you for reading my blog. My goal is to give you a snapshot of what life is like when you have a child with Autism. It's a complicated disability that affects nearly every aspect of both Cole and his family's life. We love him dearly and he brings us an immense amount of joy and pride.

I hope you never look at a box of crayons the same. And more importantly, I hope you use every single color in your box to paint your canvas. It's a gift that not everyone has.