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Posts Tagged ‘disability’

The Masterful Paintings of a 3-Year-Old Autistic Girl

July 1, 2013

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All I can say is WOW! I can’t believe that a 3-year-old could be responsible for this!

 

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Click on the link to read Disabled Children: A Missed Opportunity for Us All

Click on the link to read my post on Meet the 14-Year-Old on his Way to Becoming a Nobel Prize Winner (Video)

Click on the link to read my post on Treatment of Autistic Children Says a Lot About Our Failing System

Click on the link to read Our Real Heroes are Not Celebrities or Athletes

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There Should Be No Children Left on the Outer

June 17, 2013

 

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One of the responsibilities of a school is to fight to ensure that each and every one of its students is afforded the rights and respect of being treated as an equal. It doesn’t matter whether they have a disability, learning difficulty or if they have a different cultural or religious background, they must be made to feel welcome, equal and important.

Whilst this photo above may be discounted as an unfortunate error, it is not a good look, and unfortunately represents the kind of image that burns in the hearts of those who were discarded and rejected during their schooldays:

They’re the pictures parents treasure forever: a class photo that captures an entire school year in an instant.

So imagine the confusion and upset mom Anna Belanger felt when she discovered her son had been placed off to the side in his Grade 2 class photo, simply because he was in a wheelchair.

‘I couldn’t comprehend how the photographer could look through the lens and think that this was good composition… this just boggled the mind,’ she said.

In the photo, the class is sitting in three rows with the teacher standing on the left.Anna’s son Miles Ambridge, who’s 7, is seen several feet away leaning from his wheelchair with a huge space separating him from his classmates.

‘Being picked on and being set aside is horrendous and this was what was happening,’ said Mrs Belanger, of New Westminster, British Columbia.

She said that being in a wheelchair comes with an additional set of challenges for Miles, who was diagnosed with spinal muscular atrophy at 13 months, a genetic disease that attacks nerve cells in the spinal cord.

The Difficulties of Parenting a Special Needs Child

March 10, 2012


Teaching a Special Needs child can be a most difficult proposition, but parenting one is infinitely harder.

I read a brilliant piece entitled, “6 Things You Don’t Know About a Special Needs Parent.” It’s honesty provides the reader with great insight into the difficulties of raising a child that suffers from a disability. Maria Lin, the author of this wonderful article, is the parent of a 3-year-old suffering from a disorder of the 18th Chromosome. Up until now she has been tight-lipped about her experiences. I have no doubt that this article will serve to educate people like myself and will provide some comfort to other parents who are in a similar situation.

Below is her list of 6 insights:

1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I’ve gotten a good night’s sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors’ visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.

2. I am jealous. It’s a hard one for me to come out and say, but it’s true. When I see a 1 year-old baby do what my son can’t at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend’s kids. Sometimes, I just mourn inside for Jacob, “It’s not fair.” Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob’s rare condition. It sounds petty, and it doesn’t diminish all my joy and pride in my son’s accomplishments. But often it’s very hard for me to be around typical kids with him. Which leads me to the next point…

3. I feel alone. It’s lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2 year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it’s so not what my world looks like (check out Shut Up About Your Perfect Kid). It’s been a sanity saver to connect with other special needs moms, with whom it’s not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob’s unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.

4. I wish you would stop saying, “retarded,” “short bus,” “as long as it’s healthy… “ I know people usually don’t mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It’s disrespectful and hurtful to those who love and raise the kids you’re mocking (not to mention the kids themselves). As for the last comment, “as long as it’s healthy,” I hear a lot of pregnant women say this. Don’t get me wrong, I understand and share their wishes for healthy babies in every birth, but it’s become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. “And what if it’s not healthy?” I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)

5. I am human. I have been challenged and pushed beyond my limits in raising my son. I’ve grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I’m just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it’s nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it’s because it can be hard to talk about my son. Which leads me to the final point…

6. I want to talk about my son/It’s hard to talk about my son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I’m having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don’t often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn’t mean that I don’t want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like “How did Jacob like the zoo?” or “How’s Jacob’s sign language coming along?” rather than a more generalized “How’s Jacob?” which can make me feel so overwhelmed that I usually just respond, “Good.” Starting with the small things gives me a chance to start sharing. And if I’m not sharing, don’t think that there isn’t a lot going on underneath, or that I don’t want to.


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