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.

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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The Many Moods of Joshua

Raising Josh has been an adventure to say the least. He is an amazing boy, but even amazing boys have their moments.

Josh is going through the “terrible” two stage of life now. Needless to say, he is definitely keeping me on my toes. I waited 10 years to go through this stage of life with him, so you won’t hear me complain. However, it is challenging, fun, exhausting, happy, and many more emotions.  Today I got to catch  images of a fake temper tantrum. This particular fit was because I asked him to scoot a little closer so it would be easier to pick him up. Yes, he does understand what I am saying.  This moment occurs several times a day. Sometimes I want to laugh and sometimes I want to cry. Enjoy the many personalities of Josh. These were taken in a two-minute time frame.

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(I will translate)

Mommy I am getting angry because you want me to come closer to you so you can pick me up. You need to come to me.

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Look Mom! I’m going to bite myself.

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I am so clever. I have a better idea.

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Mom I am so sad. Please come and get me. I need you.

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Is she watching?

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I will smack myself in the face. You don’t want me to do that, do you?

(That is a wonderful behavior he picked up from a former classmate)

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Please pick me up Mommy.

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I am getting frustrated. I am going to bite myself.

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I am biting.

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Please Mom.

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I am over it. Moving on.

 

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.

Lights Out

When everybody on the east coast was losing power we were no exception, although ours was only out for an hour. Josh always wakes up during late night power outages. I think because it is too quiet and calm. It’s kind of eerie. He is usually a little scared and dazed. it also doesn’t help when some very inconsiderate neighbors decided to set off fireworks at one in the morning.  I keep a flashlight next to my bed for these types of emergencies and Joshua just so happens to have a turtle that lights up with stars. I was trying to come up with something to relax him when I suddenly remembered what I would do if I were still a child. First, we turned off the flashlight and counted the stars that the turtle was projecting onto the ceiling. (as you can tell my camera is always near.)

Joshua loves his turtle and apparently the light are even cooler up close.

Next, we told scary stories with the flashlight under our faces. Okay, I really recited Goodnight Moon and Roar of a Snore. They are two of his favorite books, so naturally they are two of many children’s books that I have memorized. After that we roared like dinosaurs and laughed at how silly we looked.

We finished our dark night off by making shadow puppets. I was extremely surprised to find that my beautiful son was totally into this.

Ten minutes in the lights came on and Josh was able to snuggle in and go right back to sleep.

Our blackout ended up being so much fun. Hopefully Josh will never forget it.

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.

Project 3: Organize My World

BEFORE

This is my nightstand table.  This becomes my I’m not sure if I should keep it or throw it away storage area.  Yes, when I open the door the contents fall out.  The trashcan became my friend for this organize.  I didn’t need any extra money for this one.  All I needed was patience.  That’s right patience.  I needed to sit down and go throw everything in the stand and either throw it away or find an actual place for the item.

AFTER

That’s much better.

Oops.. night stands are private.  Now you know I have no idea what I am doing. Ssshhh….Let’s keep it our secret.