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It was a warm and sunny fall day. Meghann and I sat on my uncle’s porch step. I stared across the street to the park. I spent most of my days as a kid at this very park. The fall colors of the leaves were in full swing with shades of orange, red, and brown.There were kids playing basketball, swinging, climbing, and a couple on the tennis court. Meghann and I were accustomed to being spectators, and we didn’t mind. At this time Meghann was around 8 years old and considered nonverbal. Her ability not to carry on a conversation didn’t stop me from talking to her as if she would answer me. I described the scenery and activity in the park while Meghann listen quietly. We were unaware of the girl who appeared until we heard her voice.
"What’s wrong with her?"
The little girl stared at Meghann, and slowly walked away from her as if she was contagious. As she waited for my response I assessed her age around Meghann’s. It wasn’t the first time I was asked this question. I had my answer well memorized as if I was giving a speech. Of course I would tweak it depending on the age of the inquiring mind that wanted to know.
During the years I was raising Meghann, I was asked one question repeatedly. That question was always the same, and I never knew when it would occur.
What's wrong with her?
This question was asked by young children and sometimes strangers in public. I have to admit there were times I would grow tired of the question. However I felt it was my responsibility to raise awareness and educate the community. After all, it was in Meghann’s best interest for everyone to understand cerebral palsy. My motivation to explain was driven by the desire for people not to be afraid of my little girl. I believed I could educate, explain, and answering questions concerning Meghann openly. I hoped it would promote awareness and acceptance.
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| The first stroller |
The more people who realized Meghann was a person first the easier it would be for her to be accepted and welcomed into her surroundings. I wanted everyone to know she is an individual that people don’t have to be afraid of, who laughs, hurts, cries tears, tells jokes, loves, and gets mad. As soon as people understood Meghann was more alike than different the easier it would be for the world to accept her. Thank you to all of the people who bravely asked me the question. And for those who are too afraid, embarrassed or timid this is for you.
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| The beach in Florida |
What’s wrong with her?
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| UNO Dealer |
There is nothing wrong with Meghann. You don’t need to be afraid of her, and she is not contagious.She was diagnosed with cerebral palsy at 11 month old. She uses wheels instead of her legs to get around. You can talk to her and joke with her. She has a great sense of humor and loves to give out hugs. She enjoys watching Wheel of fortune and doing puzzles. Communicating with her may not be typical, and that's okay. Meghann relies on sign language, gestures, and her augmentative device to communicate. Her augmentative device will do her talking for her, and she might even tell you a joke. Be patient. Allow some time even if it makes you feel awkward with the silence. She may need a little more time to respond. You should ask Meghann questions that require a yes or no answers. It will be easier for her to engage. Be patient and you will find out what a wonderful, funny, lovable, smart and fun young lady Meghann can be. She might even kick your butt in a game of UNO or trouble.
The question over and over.
Have you ever been confronted with well meaning people asking you repeatedly about a challenge you are facing ? You might become annoyed with the questions all the time. At times I felt that way with people. I soon realized how therapeutic it had become by talking about Meghann’s cerebral palsy. The repetitive questions and answers have educated me along with everyone around us. Talking about Meghann’s cerebral palsy helped me accept the role of being a parent with a special needs child. It helped me recognize the role as a gift and contribution to society. I have hated, cried, cursed, accepted, embraced, promoted, and loved my life as a parent of a special needs child. We are a one of a kind group. A group I am proud to be a part of every day. I cannot imagine my life without Meghann. She has enriched my life with patience, acceptance, tolerance, knowledge, empathy, and most importantly unconditional love.  |
| The Special Olympics |
Reminder!!
Online Support Group for parents/caregivers of special needs children and adults
Grandparents, siblings, aunts and uncles welcome
November 7th - Tuesday 7 p.m.
Remember to join the online support group meeting this Tuesday night. We have a great night planned.
The first Tuesday of each month.
Stay as long as you wish.
Participate at the level that you are comfortable.
Use the app zoom
https://zoom.us/
Phone number 646-558-8656
ID number 859 589 845
November topic: Transportation and open discussion
Next meeting: December 5th at 7 p.m
Topic: Holiday challenges
Contact:
Jill for meeting ID number
jillianm1963@hotmail.com
Txt- 815-866-3776
Follow the link below to listen to this months online support group meeting.
Topic: Sharing experiences
Date: Nov 7, 2017 6:37 PM Central Time (US and Canada)
Meeting Recording:
https://zoom.us/recording/share/a5hG16SU72EfvIaK_NaOzoLi6-pjURtSgLeU6xONfj-wIumekTziMw
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