The Special Needs Card

Special Needs Card

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.

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The Special Mom’s World Top 12 Blog Entries of 2012

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12. Edible Sand

edible sand

11. Wanna Be Friends

Wanna Be

10.  Christmas Wreath

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9. A Million Times Over

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8. The Many Moods of Joshua

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7. Monkey Bread Pizza

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6. DIY Flower Pots

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5.  The Icky Sticky Sensory Mess

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4. Grinch Goop

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We had a tie for #4

Make Your Own Snow

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3. Coaches Gifts

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2. Mason Jars

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I will admit I was a little surprised to discover that the #1 post of 2012 occurred on the last day of the year. There were more hits in the first hour for this entry than any other entry before it. The wait is finally over the #1 blog entry for  The Special Mom’s World of 2012 is……..

1. Baked Potato Grilled Cheese

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25 Family Activities for Christmas

Here are a few examples of my 25 list. To view more be sure to click on 25 Family Activities for Christmas at the top of the page. I am adding more everyday!

1. Snowman Family

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I am going to try really hard to have 25 different family themed activities before Christmas.  I believe that we need to focus on what is truly important during the holidays. Okay, I feel that way all year, but I think so many people lose sight of what is special in our lives. We become consumed with buying things, wanting things, and stressing when we cannot afford those thing. Take a breath and recharge. I know my son Josh is grown he will remember the days we spent playing together as a family before he will remember that toy he had to have.

I hope you have as much fun over the next 25 day as my family will.

Our 1st activity was painting our snowman family.

Supplies:

1 can of Spray snow  (We used the entire can for 3 snow people)

Washable Finger paint.

You can use your imagination for the rest. We painted the snow people first. We let them dry and added the fingerpaint touches.

This is a great way to decorate for the neighbors to see and have the kids feel like they had a hand in the design.

2. Make Your Own Snow

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This was a fun sensory activity.

All you need:

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1 shaving cream

1 bowl to mix the ingredients

!!!!Warning!!!!

This is messy, but so worth it.

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You can mold this, smoosh it, and make it snow.  It cost me two dollars to make this and gave us hours of fun.

3. Decorate a Planter

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This was another fun and easy activity.

I already had the planter and soil. If you don’t have those two items you will need them. I bought all the decorations at the Dollar Store. I purchased the poinsettia at Wal-Mart for $3.88

I simply wrapped a ribbon around the pot and attached a star. I planted the poinsettia and added Christmas balls for color. I bought these squiggly twigs and placed them in the soil. Voila! This doesn’t have to be a messy project. However, my beautiful son wanted to play in the dirt.

Family Fun

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Quality family time time can go a long way. Today we spent a few hours in a toddler pool on my back porch. My son was so happy.  His father participated (which doesn’t happen often) and Josh has been over the moon all day.

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Here Josh’s dad was teaching him how to make a ball shoot out of the water.

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Family time is priceless.

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Leave it to me to make our activity in to a theraputic activity. We decided to catch the fish. All we needed was a net, some fish, and a couple of balls. Josh was working on his motor skills and didn’t even know.

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Apparently Josh thought it was time for sushi.

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 Josh says no more pictures please. My son’s smile and joy makes me beyond happy. Nothing is better.

Enjoy your family! These are the moments your children will remember. These are also the moments your children will try to recreate for their children.

Blind Vision

I went to Josh’s school  for a parent involvement day.  We typically sit around and talk about what the kids are working on, how to improve their educational experience.  You know the usual. Today we experienced something different, being the parents’ of children with special needs we have other issues that we have to think about while teaching our kids.  Many of our children have vision issues or attention issues that effect the way they see the world.  Josh’s therapist brought in goggles with different vision scopes.  My goggles gave me the illusion of being blind in my left eye and retinal detachment in the right.  I was then given activities to complete. I had colored cotton balls and jacks laid out on a piece of cloth with circles that was the same colors as the objects I had to find.  Now with my regular vision this would be no problem, but when your vision is similar to looking through a blurry pinhole it can be a little daunting.  The next activity was to pick out my snack from 3 pictures.  It was confusing and I wasn’t quite sure what a chose.  Thank God it was a Hershey kiss, because that could have gone very wrong.  The last activity was to walk around the room and find pom poms.  The teachers did move the children out of the way, so the stumbling parents didn’t trip over them.  The point of this activity was so we could understand how the world may appear to our kids, and what we could change to make it easier on them to get through the day.  It was educational and I am glad I got the chance to experience it.

 I did luck out here is a picture of the goggles another mom had to wear.

This is what Josh was doing while I was sporting the Despicable Me look.

Take Me Out To The Ball Game

We had a fantastic day.  Today was Josh’s spring training for his new baseball team the Bulls.  He did great.  He threw the baseball several times.  I have never seen him throw a ball.  He normally has no interest.

He danced  his way across home plate.

 Children with special needs don’t usually have the opportunity to be involved in extra curricular activities, but thanks to organizations like the Miracle League of the Triangle these kiddos have an opportunity to be involved in their community and have some fun.

On September 16,2004 the Miracle League of the Triangle had its first game.  That first season included over 100 “special” athletes and more than 200 community volunteers.  Over the next 6 years the Miracle League of the Triangle has grown to more than 300 athletes and they actually have a waiting list for the volunteers.

The Miracle League of the Triangle is a non-profit organization and rely solely on donations. If you want to find out how you can help please check out their website. http://miracleleagueofthetriangle.com/default.aspx

Organizations like the Miracle League provide children with special needs an outlet and a place in their community.  They also provide the families with a support system and the chance to see our kids do “regular” things.  I encourage you to find an organization like this in your community and see how you can help.  Believe me once you enter this amazing “special” world you will never see things the same again.  It is wonderful.