When is it okay for a special needs individual, parent, or caregiver to throw out that invisible special needs card?
I was in one of my social media groups the other day and there was a post about a little girl that was at a local bounce house establishment on a Special Needs Night. Apparently, the little girl was physically moved aside by an employee so “typical developing” children could play.
The group that this was posted in is not a special needs group, so the responses were very different from the comments in my special needs groups. I was surprised by how many non-special needs mothers had an opinion on this story. Many were upset that the local news station gave this any attention at all. A few had some comments about how it’s not fair that children with special needs get so many extra things. My blood was boiling at this point but one comment made it boil over. I can’t quote her word for word because the moderator was smart enough to remove the entire post. The jest of the comment was that parents of special needs children use their “Special Needs Card” to have people feel sorry for them and get luxuries that other families don’t have. She continued with maybe special needs families should stop living in their “special little world” and learn to live in the “real world” She went on to state how inappropriate it is to call other “normal” children “typical”. We know the word typical is ranked right up there with retard. (That was sarcasm)
Let’s pause a moment while I get out my soapbox and mega phone.
This post is dedicated to that woman and anyone else who may feel like she does.
1. Do your children have friends?
2. Does your child get to go to the playground and play on all of the equipment?
3. Will your child have the opportunity to graduate high school with a diploma?
4. Can or will your child be able to go on sleep overs or trips with there friends?
5. Do you need to stay away from establishments like Chuck E Cheese or Monkey Joes because it may physically hurt your child because of the noise or safety risk from the other children?
6. Do you need a special chair just to get your child onto the beach?
7. Do people say to you that you are such a great parent because you kept your child?
8. Has your child spent more time in hospitals, doctor’s offices, and therapy centers than on the playground or with friends?
9. Did you lose almost all of your friends and family the day your child was born?
10. Has a complete stranger pulled their child away from yours and said don’t get near him. He’s sick?
11. How many times has your heart broken and your world stopped because a doctor told you they didn’t know if your child would live?
I seriously could go on and on. Children with special needs don’t get to enjoy this life the way other children do. They can’t go outside and ride their bikes with their neighborhood friends. Their parents don’t spend their days shuffling them back and forth to sporting events and dance recitals. We spend our days at doctor’s appointments and therapies.
I don’t begrudge “typical” children the right to have these experiences. I love to watch my nieces and nephews playing and growing and truly enjoying their lives. I am curious to why someone would have a problem with my child having his own experiences. If an establishment decides to have a Special Needs Night how is that using my special needs card? Also, why should a disabled child step back on these types of evenings so a typically developing child can play? Don’t our “special” kiddos do that everyday? If I tell someone my child is disabled I am not looking for pity or special favors. I am simply trying to make sure that his needs are taken care of or if we can even continue with an activity. We can’t just go somewhere and expect that it is handicap accessible or that he will be physically or mentally be able to participate. When I talk about my child’s therapies, surgeries, or doctors appointments its no different than a “typical” family talking about their child’s baseball game, dance recital, or theater group. This is our lives. This is what are children do. It sucks!! Our children have to take a backseat because the world is not handicap friendly. Our children go to all of these therapy appointments to make their lives easier and to conform to our ideal of what normal is.
When someone says that we need to be part of the “real world” and stop living in our “special little world” it infuriates me. We try daily to live in your world a world that is not set up for our children. How dare you assume you are better or more deserving than us. Aren’t we a country that strives for equality? Take your blinders off people. Stop being so self absorbed. Special needs families struggle on a daily basis. We struggle because we are not accepted by the “real world”. We are financially drained because if you label something with special needs it quadruples in price. We struggle because 85% of us are doing this alone. We didn’t ask for this. Our children didn’t ask for this. So, to the ignorant woman and her insensitive comment get off your high horse and spend a week in my shoes and let’s see if you are still so nasty.
Oh and by the way my “special little world” has more beauty in it than you will ever know. It is a difficult path to walk but because of my amazing son I get to see miracles everyday and appreciate them. I also know unconditional love at its purest, so you can keep your “real world” it doesn’t sound so amazing.