Yesterday started the 8th year with my current job. Every year the administration wants to inspire us to do our best, to help kids, make a difference. This year they hit the nail on the head. We started with the normal introductions of admin, new staff, support staff....then we were told about the speaker and a short video started. A video produced as an Eagle Scout's project...Tyler wanted to share about who he is in a very creative way.....allowing his audience to see who he is and then throws quite the curve ball at them. It drove home EVERYTHING I know and believe about kids....especially my daughter. Through him I could see her....achieving anything she sets her mind to.....sports, school, friends, the sky is the limit.
Ability awareness is wonderful....in the end Tyler talked about how really his video wasn't about him, it was about the people in his life that didn't put limitations on him. People putting limitations on Maria is the quickest way to make my momma bear come out. This happened once this summer.....it was a hard situation and I was too tired from all our appointments and schedule to deal with it in the moment. What was suppose to be a wonderful time, ended up being the dark spot of our summer.
So, how can others have ability awareness with Maria? First, don't compare her to other people with differbilities. With any diagnosis/medical condition there is a range/spectrum, it isn't the same for everyone. Until you have spent time (more than an hour) with her and seen what she is capable of, you won't know what she can do. Second, don't make assumptions. Just because Maria uses crutches and a wheelchair doesn't mean that she is slow, it doesn't mean that she won't want to do what everyone else is doing. If you assume she is going to just sit there and wait for you happily, you are very wrong. She will do it if an adult tell her to, most likely very grumpily, but she would rather do it her way with her peers. Third, Maria's wheelchair, crutches and braces are part of who she is. Don't think what a poor kid or feel sorry for her, that won't help her. Get over your issue with her adaptive equipment, it's your issue, not her's. At the same time respect that these are tools for Maria to use....ask before you touch them, don't push her in her wheelchair unless she asks you (and even then we are currently encouraging her building endurance, so don't push her). I get it that it is common to stare at the kid in the wheelchair or with the forearm crutches or orthotics....trust me, I see the stares....I see the kids who are quickly hushed by their parent when they ask a normal question....I also see the people who go above and beyond when they don't have to...the ones who smile at her, who hold doors open, who give up their place in line so we can use the handicap accessible bathroom stall. Fourth, just because something is "handicap accessible" it doesn't not mean that it really is accessible for everyone or right for Maria, what it means simple is that it meets the minimum standards for the ADA laws (yeah, one hotel we were in this summer had no elevator, still trying to figure that one out). Another example of this is in hotel rooms....the handicap accessible bathrooms are huge, which is nice, but the toilets are so far away from the shower/bathtub that an easy transfer from one to the other doesn't happen....instead she has to do two extra transfers, usually without her braces to give her legs extra support. Ramps are great, but if she is walking, sometimes the stairs are easier, because it means a shorter distance for her. Hand railings are a must for stairs, but I have yet to see one that is long enough for her. It is also amazing the number of homes that do not have hand railings. Last, remember she is a NORMAL 12 year old girl. She doesn't always like to talk, especially with people she doesn't know well....in fact she prefers to communicate with non-verbal facial expressions most of the time (drives me nuts). She has great verbal skills, but she is also a HUGE perfectionist.....she doesn't like to be corrected or make mistakes, trust me I know. The more comfortable she is with someone, the more she is willing to talk to them. She loves music, sports, the cats, time with friends, shopping, clothes, looking at magazines and the normal girly things. She also wants kids to like her for who she is. She is more open to kids who approach her and make an effort. I saw this first hand with Katrina the other day....Maria enjoyed that time so much because Katrina was interested in her....and I have heard questions about Katrina ever since!
I'm trying my hardest to help Maria know that she can overcome the limitations in her life. Sometimes it takes me time to figure out how, but thankfully I have some great friends and family who help me. They also help support me when others bring out the momma bear. So, when Maria's newest desire to learn to ice skate....yup, gave me a grey hair or two when she said that one, came up, my friends were quick to give me suggestions. One even asked Tyler's mom yesterday and now we know of a place in Iowa that can help her fulfill this dream.
If you want to find out more about Tyler or order his video (which I highly recommend) check out his website www.imtyler.org
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