Tuesday, May 24, 2011

Can I have your attention????

As the Mom of a child with Special Needs, I wear lots of hats. Nurse, Mommy, therapist, teacher, insurance agent, travel agent, and the biggest job I have is ADVOCATE. I don't just advocate for MY son, I advocate for all people with special needs.

One of the absolute BEST campaigns is Tim Shriver's Special Olympics "Spread the Word to End the Word" Campaign. The word we are talking about?  Retard or retarded.

You have all heard people use it, or you might have yourself.  "Oh that is so retarded"  "You are SUCH a retard!"  Yeah - we get that you think you are joking. The thing is - it's not funny.  You are using those words as a slam - as a putdown. Your aim is to bring down somebody to the level that you THINK my son lives at. The only one you are bringing down is yourself.  DOn't quote the dictionary to me. Don't site your right to free speech. To paraphrase Tim Shriver, you have the right to make a fool of yourself. We also have the right to tell you HOW those words affect us.

Don't believe me?  Maybe this will help:


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Saturday, May 21, 2011

Before the World Ends.....

Hello all!!!  The fact that I am posting might be confirmation that the world really IS going to end today!  LOL! (Just kidding)  I actually had 2 posts ready last week when Blogger broke.  They never came back. :(  So, I am going to give the short version here.

We have been SUPER busy. We are going to Chicago at least once a week, sometimes more. Christopher is getting PT every week, and we are trying to cram in as many doctor appointments as possible while we are up there. Christopher is doing GREAT in PT. He is getting in the pool a couple of times a month. He really likes the pool.

PT Pool at La Rabida

Medical stuff is going to have to be a whole other post - we don't have all day here. LOL!  Most of you know that Christopher is on what is called a "Medically Fragile and Technology Based Children's Waiver".  This waiver does away with income requirements for a medical card and helps to provide in-home nursing + respite, and a few other things. Our renewal was due in March - we missed it by one point - because Christopher wasn't hospitalized enough!  The long and short of it is, the criteria they use to decide if you are qualified are definitely biased towards kids with trachs. NOT that children with trachs do not need the waiver - just that there are some children who are medically fragile and don't have trachs that also need the waiver. Needless to say, we are appealing that decision. That involves a TON of doctor appointments, lawyer visits, etc.  I'll keep you updated.

Big Chris and my Dad (Papa) started taking TaeKwonDo classes in March! At 69, I think Papa is the oldest person at this studio.  They seem to be enjoying it and are getting in shape - I think. I guess stooped over and gimping is a shape. LOL!  They have already been tested and have received a promotion to the next belt - orange! My nephew also attends and is a 2nd Degree Black Belt at age 10. He teaches classes and belongs to a demo group.

Big Chris also has more news! He has decided to get Baptized in our church!!!!!  This is a big step, and we are really proud of him. He decided this on his own. Things worked out so that he will also be confirmed the same day. We are also lucky that our new Bishop of our diocese will be visiting that day as well. So our regular priest will be Baptising him and our Bishop will be Confirming him!  Christopher will also be getting re-dedicated. He was Baptized when he was a baby. We had to do it quickly as we thought we were going to have to Life Flight him to Peoria to go straight into open heart surgery. He can't be Baptized again, but he will receive his candle as he should have if he was Baptized in the Church originally. That will be happening tomorrow - May 22, 2011.

Our house is still for sale. We have had a few people look and a couple came back for the third time on Thursday to decide between this one and another one. We haven't heard anything yet, but keep your fingers crossed.  Our new house has been painted. About two weeks after we got the basement family room set up in the new house, it flooded from all of the rain we were getting. It hadn't done it in over 3 years, so we thought we were safe. :(  We had to clean up an re-group. We are going to be working hard on getting the rest of the house cleaned and things put away as much as possible in the next few weeks.

I am also going to be re-organizing the blog a bit. Don't get upset if a link isn't on the side - just check the pages above.  I am going to move most of them up there.  Our blog roll is just getting too long to keep on the side of our blog!  :)

I will be doing a separate post on this, but Christopher was lucky enough to win an iPad2 and $500 worth of software from Marissa's Bunny!  Stop on over for your chance to win one too! 



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