Wednesday, September 1, 2010

20 Years of ADA

There are days when I think it is me against the world in the department of including Makenzie in every part of life.

I have been met in some places with much resistance and others with very little. I have been apologized to, I have been pitied, I have been met with kindness and acceptance, and also very rude and understanding behaviour.

I remember one specific time that just outlines so perfectly some of the battles I fight. A day for family. A day of laughter and smiles. A day of battle and tears, a day to win one battle in the war.

Bumper boats... not long ago. There was a lot to see but no much for Makenzie to do. As I looked around trying to find the perfect activity. My eyes scanned across the park, go karts... nope, batting cage....nope, bumper cars... not so golf.... hmmmmmm, bumper boats.... now that's a winner! The only problem... Makenzie can't sit up and some one needs to drive the boat. I pondered a bit and then a solution. I can hold Makenzie and one of the boys can drive. Sweet! Or not.

When we got to the front of the line I explained our situation to the ride attendant who promptly called the supervisor down. I still had on my happy smile and explained once again what I needed to do. NOPE, NADA, safety issue, can't have 3 people on the boat, blah, blah, blah!

My happy face has now disappeared. My family is getting antsy and I am sure a bit worried about what I may say or do next. A tear starts to fall down my cheek. If you know me this usually happens when I am enraged. Not good, stand back, I wouldn't want to be you.... kind of angry.

So I tell the nice gentleman that is fine. I will take Makenzie onto the ride like all of the other little kids. I will try to hold her up and drive but I am pretty sure they will have a even worse safety issue at that point. By this time by face is dripping tears and my grandma steps in. " Just give me Makenzie and go on the ride with the boys. She wont care." I turn and look at her " Nope Makenzie is going to ride this ride. "

I turn back to the supervisor and ask him if he would please just allow my 5 year old who gets left in the dust more times then I want to count the opportunity to have a good time. To be part of the action. At this point he concedes telling me that if it looks unsafe he will have to call us back in. FINE!

Right before we get onto the ride he tells me how sorry he is and that he just needs to always be safe. I look back and him and say I know... but I have to always fight this fight for my daughter every single day of her life and some days it gets really old.

Needless to say, Makenzie had a great time. I drove the boat and my oldest held Makenzie. We all laughed, got wet, and bumped our brothers, and cousins many times.

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Smiles all around. Now really was it that hard?

After our ride the owner of the park found us. He was so kind. He apologized again and again I told them that I got it... really i did but that didn't mean it was right or fair. I thanked him for letting Makenzie participate and told him how much that one simple thing meant to me and we went on to play some mini golf.

This is a battle. It is one I NEVER imagined I would have to fight. I have learned how to be heard for Makenzie. I will admit sometimes it is not pretty. I just want the best for Makenzie. I am her voice and I do not take that job lightly!

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Makenzie loves school. She is in a mainstream classroom. With a one on one aide. The specialists and teachers are doing tons of consulting and really working together to to meet Makenzie's needs. They are doing a stand up job! Do you think for one second what we have today wasn't a fight. LOL!!! That picture of Makenzie circling the letter of the day took HOURS of meetings, telephone calls, tears, and frustration. The result.... she has a wonderful teacher, special ed teacher, specialists, and aide that are working together for Makenzie.

I refuse to feel sorry for myself or my daughter. There may be days when I am overwhelmed. I think we all have those days. I will not be bitter with a world that does not get my daughters need. Nope.... I am going to change it! Makenzie LOVES life and she WILL live it to the fullest!

One day I hope to put what I have learned in the last few years and what I will continue to learned to good use advocating for all children with special needs! If only I had a few more hours in the day!

Believe... Prayer Works!


Paula said...

Boy, do I feel for you! We could almost be the same person! Sometimes, I get tired of fighting. Other times, I have a renewed passion and renewed energy to fight for her.

I wanted to share something with you...we haven't been yet, but hope to next's an amusement park specifically designed for our special's called Morgan's Wonderland and it's in Texas.

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