There are very few mums and dads of kids with special needs who haven’t been in a situation where their child is being stared at, whatever the reason. It’s always difficult to deal with and depending on what sort of day you are having will often determine how you address the situation and how it leaves you feeling… Today’s Firefly Garden blog comes from mum to Zoe, Amanda Frake. It doesn’t matter where we are…the park, the pool, a restaurant, the grocery store, the stares happen. The adults attempt to be subtle about it…most of the time. The kids just outright stare.
Because, aside from the fact that she’s in a wheel chair, Zoe doesn’t “look” disabled, most of the stares are of curiosity. There have been adults who have had stares of pity and disgust as well. That makes me angry. But what really gets me is when the kids are reprimanded for staring. I realize that staring is rude, but what you don’t realize is that when you tell your kid not to stare at the “special girl” like it’s a bad thing or pretend she’s not there, you are in a way teaching your child that disabilities are a taboo or something to be ashamed of. Instead of ignoring Zoe and pretending not to stare, support your child’s curiosity. Encourage them to ask questions, and if you can’t answer them, then come ask me.
I would much rather you come ask me questions – even rude questions – than just have you stare at my kid. Yes, she is in a wheelchair, and yes, she eats her meals through a tube in her belly. It’s different. But it’s not bad and it’s nothing to be ashamed of. Let your kids come over and talk to us – guess what? They won’t catch wheelchairitis or tube-tummy.
Disabilities aren’t contagious – and if she had something your kid could catch, I’m a considerate enough parent not to bring her around other kids! Something else to consider when you talk to your kids, and something we have come to learn when talking to Zoe’s brothers, watch out how you use the word ‘special’. Kids with disabilities are often referred to as special needs or just special.
I didn’t realize how hearing that word affected the boys. Special (adj.) Surpassing what is common or usual; exceptional or distinct among others of a kind. The boys heard us and other adults refer to Zoe as special and thought that she was more important and more loved than they were. Talk about an eye opener! When you talk to your children about special needs kids, make sure to emphasize that special needs doesn’t mean these kids are more important than they are, they just need a different kind of care and a little more help.
Also, don’t pity my child. You should actually be in awe of her – she is one of the strongest people I know. To deal with what she has to deal with on a daily basis and still wake up each morning and say, “Come on world, what do you have for me today?!?” takes an amazing amount of strength and courage and a healthy dose of stubbornness. She is so full of personality and sass, it’s just stuck inside and can’t always come out. Don’t pity her because she is stuck in a wheelchair and can’t walk and can’t talk. Applaud her courage and her leaps in development – hey, she held her head up for a full 2 minutes, WAY TO GO!
She had six seizures this morning, but after a short nap is grinning at her brothers and watching the world around her – GOOD JOB, Zoe! Encourage her victories, admire her strength, chuckle at her stubbornness, but do not pity this little warrior – she is stronger than you know. Don’t pity her family – be envious of us. We have the most amazing and beautiful little girl who teaches so many valuable lessons. We have learned so much of love and patience and kindness and truly seen God in this little girl.
We have learned just how many people truly love us – something a lot of people take for granted I think. Yeah, you have friends and family and in the back of your head you know they’ll be there for you when you need them. But to see the amount of people come forward to lend a hand, even when you are too proud to ask it yourself, is genuinely awe inspiring. It brings me to my knees to see the love pour forth from all of our friends and family, and perfect strangers who have never even met Zoe. She has the ability to touch every one she meets, and she is ours.
There is a saying that it takes special parents to raise a special child. That’s a load of bull. Parents do what they have to to help their children grow and succeed, no matter what the circumstances are. We are no different than any other family out there, but somehow God picked us to give this amazing, remarkable little miracle to and she has changed our lives.
So don’t pity us for having to “deal with a special child” but be jealous of the beauty we get to experience every day. Each morning I wake up and see the three miracles God gave us and I am so glad for them.
Have we had obstacles to overcome? Yes, but who hasn’t? Have our hurdles been a little higher than some? Perhaps. But we face them as a family, knowing that we have a sea of support behind us and love from up above and we know we can do anything.
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