Sean and Arthrogryposis

We are blessed to have found a school that Sean loves.  He is currenlty going twice a week and here he receives both physical and occupational therapy.  Sean has thrived at school, and loves to be with other children. 

Starting this Fall Sean will be attending pre-k, and we are all looking forward to this new accomplishment.

Sean can walk, run, climb and get in trouble like any other 4 year old, all thanx to his AFO's and his hard work.

Wow!!!  What a month this has been! 

Sean got his "blue legs" of yesterday and the doctor says his bones look great!  Should not be much longer until he starts feeling comfortable trying to figure out how this walking thing works!  He does not want to look at his legs, they don't look very pretty, and keeps them covered with a blanknket at all times. Long baths with lots of lotion will remove all the dead skin, and the scars.....they are there to remind us how lucky we are to be able to move ahead, not look back.....but never, never forget!

Sean and I have been working on him trying to feed himself.  It is very hard, especially with the limited bend of his arms.  But the weirdest thing, something I never expected is that today he actually fed himself dinner with his left hand.  (his right arm is the one that has the most movement!)...............like he says AMAZING!

I think all of this is just a jolt, to remind us that we should never take anything for granted......or better yet, always expect the unexpected!

OK, I have to get it off my chest!  Yesterday I took Sean to the Florida Mall, because it is the only local mall left with a Disney Store.  I should have known better, it is in the tourist area of town, about 30 minutes from my house, but he wanted to go to Mickey's house and I did not want to go to the Disney Area.

So............I have found that there are 3 types of people. (My AMC friends probably already knew this)

Type #1 - Friendly, and "not normal" is OK.

These are the ones that see a 2 year old in a wheelchair, and they think he is normal like the rest of us, and will say "hi", "Hey buddy" etc, in a very upbeat way!  My kind of people!!!!

Type #2 - AHHHH, Poor Baby

Makes me want to SCREAM!!!!!!!

Don't get in the kid's face and feel sorry for him!  He is just like you or me, and he does not need you feeling sorry for him, especially telling him how sorry you are.!!! What are you? DUMB?  You are rude, and have NO common sense! 

I found one "continent, many languages" (yeah they are tourists here) is full of these!!!! They keep staring, like he was from another world.  Sean would react in a strange way.  I don't think he knew what to think.  He has never been treated like a special case, and seeing these people come up to him and just stand in front of him and stare, I wanted to say something, but just kept walking. 

Type #3 - "come everybody, look what I found"

YUP, these are the WORST!!!  I also found that these are from another continent, and usually speak the same language.

They actually have the guts to say "poor baby" to his face, and then they run to get their family members who are just as rude as they are so that they can all come back and say poor baby together!!!!!!!!!  One woman actually prayed for him in front of him, and told him she was sorry his life was going to be so hard!!!!   I actually told her in a nice way that she was being rude!

OK, I do appreciate the prayers, I know they mean well, and maybe do not know how to react to seeing a small child in a wheelchair.  But.....give me a break, people with disabilities are just like the rest of the world.  When are we ALL going to learn to treat them like we want to be treated?  Common courtesy and understanding. 

I do have to say that Americans are the most understanding group.  My husband and I even noticed it again last night when we went to dinner and took Sean with us.  Most people who want to have "a connection" just come over say "Hey Buddy", "cool chair" "I like your blue casts" etc.  He LOVES this kind of attention! He likes to show off his "Jen" chair and his "blue legs".  He does not like people looking at him like he is an alien.  Would you?...........With that being said.....to all MY FRIENDS (yes, you know who you are) I do admit I AM THE ONLY ALIEN!  IT expires Nov 09, so ...............will have to do something before that.

Thanx for letting me vent!

Yesterday Sean and I were out for a walk (Sean in his wheelchair) and we walked by the  Middle School across the street, where the kids were playing football.  Sean immediately said "blue legs off, I play football" I guess this is his new inspiration!

This morning when he woke up, that was also the first thing he said.  He wants his blue legs off, so he can play football!

Now that he has found mobility by scooting and rolling, he is a much happier kid, and is starting to go more places in the house.  We are counting the days till September 17th!

It's been a week since Sean got his blue legs.  Within the past 2 days he has finally discovered that he can scoot around by kind of pushing himself on his hands with his palms down.  It has given him some independance, and he can at least move enough to get toys around him when sitting on the floor.

He is already asking us to get his blue legs off.  September 17 is the magic day, and we can't wait!  He is soo miserable, but the thought of him eventually walking makes it all worth it!