Tuesday, September 22, 2015

Sock Hand...

It has occurred to me recently that I don't I've ever explained the sock on Max's hand.  It's one of the first things little kids ask when they meet Max for the first time, "Why is he wearing a sock on his hand?"  We even have adults ask about it when we are out and about.  Steve loves to answer, "because that's his foot", but of course that isn't the truth. 

Max wears a sock on his left hand for a few reasons.  The main one is he scratches when his eyes and nose itch.  And for Max, he doesn't stop until he draws blood...yes seriously.  I won't go into details but it is one of Steve's favorite stories about how I screamed my head off thinking Max had dislodged an eyeball after one of his scratch sessions....a very, very bloody eyeball. 

Another reason he wears a sock on his hand is because he has few signs, but the one that is very consistent is he bites the heel of his left hand to tell us he likes something, or to simply answer "yes" to a question.  If he's not wearing a sock, he will cause blisters to form on his palm from his teeth. 

And lastly, we are always looking for ways to avoid germs spreading to Max.  He will only put his left hand to his mouth, so that's the easiest place for germs to find their way from his hands to his mouth.  People tend to not touch his socked hand, so we can try to avoid the hand to mouth germ pass.  

There it is...an explanation of something that is just part of Max to all who know him best, but can be a bit of a mystery for those who don't know him as well. 

Wednesday, September 9, 2015

End of Summer...

Let's finish up summer with this post.  The weather is starting to cool enough to open the windows and has signaled to us that fall is just around the corner.  There is talk of birthday celebrations and what we're doing for Halloween.  This will be a long post of pictures, but I want to get it all on here to make sure it's all accounted for, and hopefully will get back on track with more frequent posting.

While it was still too hot to play outside, we took Max to check out a store with "museum animals."  This store had a huge moose that Max wanted a picture with.

We also found a tank of Colorado fish.  

The best thing about that visit was finding a huge turtle pillow!

It was time for school to start.  Being a 6th grader means he did not want a picture, but I tried to sneak a few in anyway.  

When his new teacher asked if he liked what they would be working on this year, he said, accepts, accepting this.

He needed big turtle to be near him through art therapy to work on a few turtle paintings.

Max has been able to get out during the day more because the weather is cooling.  He loves his walks around the neighborhood. 

We took a trip for my mom's memorial in Oklahoma.  Max was able to go too. He slept through much of Kansas...I did too.

He got to ride on one of his Great-Uncle's horses.  

And got to visit with lots of his family who haven't seen him in many, many years.

Max really enjoyed getting to see his Pops!

And his great-grandparents.  Here he is with great-granddad.  He calls Max "Catfish."

Max with great-grandma.  

It was a good time with family, and I know mom would have been happy with how it all turned out. She always came to Max, so, we knew for this we needed to take him to where she rests.  It wasn't a particularly difficult trip for him, but it was longer than he's traveled in almost 8 years.  Once we got to the hotel, we found the difficult piece.  He had nowhere comfortable or safe to sit outside of the wheelchair he had just been in for 12 hours.  So, we had to get creative and put a couple of chairs together to try to make a chair work for him.  I wish so much he could fly to get from point A - B easier.  But, we'll keep working on it.  Because as it turns out, he definitely has the traveling gene from both his parents and loved going on an adventure! 

Now we're home and into the full swing of school.  Max is starting to learn all about turtles, and of course is really enjoying it!  

Saturday, August 22, 2015

Therapy celebrations...

Max had a special couple of therapy days in the past couple of weeks.  His speech therapist, Brittany, is on to new adventures.  While we're so sad that she won't be here to chat with Max every week, we'll still be close because she's really turned out to be a great friend and is on our board for our non-profit.

For their last day, Max wanted to have a picnic at Whole Foods together.

When B went to get coffee for them, he said "Can I have a turn?"  He loves his coffee time with Brittany!  He wanted to wear the shirt he tie dyed with Brittany for their special day.  

We are meeting a new speech therapist next week and hope the transition will be a quick one.   He tends to latch on to his therapists and doesn't like change too much.  

This week was also a special anniversary, 5 years with his music therapist, Laura.  Max had the idea that she needed a present to celebrate, so he got her a little necklace with a heart of gold on a thread. When the thread breaks her wish comes true.  The heart of gold reference is because of their song they sing together, Heart Of Gold.  Each time he hears it he says, "WaaaaahWuuuuuh!" She says he has a heart of gold, but we know she does too. 

To celebrate Laura brought streamers and stickers for Max.  They listened to some of the recordings they've made with each other over the past five years, and of course played music and sang together.  

Max's first friends in his life were his therapists.  They are with him every week, and have been through all the ups and downs in life.  But just like in life, they will come in and out of his life.  We're so grateful for the work they do and continue to do.  It is a huge part of what makes Max's life so great.