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.

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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.

A Million Times Over

 A Million Times Over

By Michelle Finn

I have known love forever.  First with Randy Toothmen in second grade.  I showed him love by calling him cavity creep and running away.  Second with Brett Berry in sixth grade. I would call him on the phone and giggle, but I never had the courage to talk to him at school.  Third with Dalton Britner in high school. I believed him to be my greatest love.  We dated through high school and into college; a lifetime at that age.  After Dalton there were many other loves that I thought I could never live without.

It wasn’t until 2002 that I discovered the true meaning and feeling of real love.  I was in the operating room undergoing an emergency C-section, waiting for the doctor to hold up my new baby, and announce it’s a boy.  What I actually heard was “he’s not breathing.”    In that moment my entire world cracked.  It seemed like hours before I heard him make a sound.  Though in reality it was less than two minutes.  The nurse finally brought him to me.  He was already swaddled in a blanket with a hospital cap on.  If Stefanie Meyer would have written Twilight already I would have named him Edward. He had pale skin, black eyes, and was beautiful perfection.  Actually I call him bug.  It just slipped out one day and it stuck.  His real name is Josh.

Josh was finally released from the hospital nursery at three days old.  I noticed something odd when I finally had him to myself.  He would shake and afterward pass out.   I questioned my doctor, his doctor, and probably the entire nursing staff who all replied “It is normal.”  Over the next three weeks the shaking turned to convulsions and after he would be unconscious for hours.  Josh’s doctor still tried to convince me this was normal infant behavior. I decided to take my beautiful boy to the emergency room.  As we pulled up the convulsions started again.  His father dropped us at the front door while I ran frantically into the ER shouting “My three week old is having a seizure.”  What I thought was my greatest fear was soon confirmed.  Indeed, my three week old son was having a seizure.

Hours later we were being air lifted to a hospital in Baltimore.  The seizures continued and my fears escalated.  The doctor told me to hope for the MRI and genetic testing to come back normal; they were the only two tests that I had to fear. The tests all started to come back negative, negative, and negative.  This was a good sign.  The MRI however did not come back the way I had expected.  My beautiful boy had brain damage.

Josh was released from the hospital a week later.  I was to give him Phenobarbital twice a day to stop the seizures.   My heart broke for my boy.  I hated to give him such a strong medicine, but I hated the seizures more.  One week after we came home I received a call from the geneticist office telling me the results of his tests had finally come in.  The nurse, Carmilla wouldn’t give me any information over the phone, but wanted to see my husband and me the next day.  I pleaded with her to tell me something.  Her response was “He should live a normal lifespan.  His hearing and vision should be okay,”  “ But what does that mean?” I asked.  She responded “ We will see you tomorrow,”

I was sick to my stomach as I packed the diaper bag for our almost two hour journey to Baltimore.  The only thing that I believed was after this appointment our lives would never be the same.  The nurse ushered us into the examining room, and the doctor followed.  Carmilla weighed Josh and measured almost every part of his body, while the doctor took pictures.   My husband and I sat in confused shock wondering what was happening.  I finally turned to the doctor and said “ What is wrong with him?”  He pulled out a black and white drawing of a chromosome with the top of the drawing highlighted yellow.  I suddenly wished I had paid more attention to college biology.  Pointing to the highlighted area he said “ Your son is missing this.  He has what is called 1p36 deletion syndrome.”  “What does that mean?” I asked.  His response “He has severe mental retardation.  He will never know you.  He will never be able to do anything for himself.  You had a better chance of being struck by lightning twice than having a child with this disability.”  I held my precious son tighter and adamantly disagreed: Josh already knew me.  I believed he was disabled, but I did not believe he would never understand or not be capable of anything.  The doctor did not join in my optimism.

The first year with Josh went by like a whirlwind.  We had what seemed like nonstop doctors’ appointments and therapy sessions. When Josh was only two months old he was already involved in  physical, occupational, cognitive, and speech therapies for ten hours every week.  He also had eleven doctors.  I had to quit my job, which left us with only one income.  As Josh got a little older we realized our area did not provide most of the services that he would need, so we sold our home and moved to Pennsylvania.  Josh had a wonderful teacher for preschool, but no therapy center would take him.  I had a friend in South Florida who had a daughter with 1p36, and she was doing remarkably well.  Her therapy center offered an intensive therapy program; something insurance would not cover.  I decided to have a fundraiser and raised twenty-five thousand dollars and Josh and I headed to Florida for two months. After preschool  we sold our second home and moved to Florida.  We lived there for two years but unfortunately could not afford to stay. My husband and I separated and the three of us moved to North Carolina.  He lives only a few miles from us and visits Josh almost every day.  Most of the programs that were in North Carolina have dissolved, and again we are left without the proper help. We are now facing our fourth move in nine years.  If it were not for our families and Josh’s father I am not sure how we would survive.

.  If you remember we were told Josh would never be able to do anything on his own.  That doctor ended up eating his own words.  Two years after Josh’s diagnosis we went back to that geneticist  who was completely surprised by Josh’s progress, and apologized for saying Josh could never learn.  I should have played the lottery that day.  It is not often you hear a doctor admit when they are wrong.

Now let me tell you why I have sacrificed everything for my boy. Josh is an absolute love bug.  He is constantly showering me with hugs and kisses.  He scoots around our home and plays with toys that indeed he can activate himself.  He is almost independent with his walker.  He uses some sign language, and is starting to master a communication device.  He is the funniest child I have ever known.  In typical boy fashion he loves anything gross, noisy, and smelly.  He has the most contagious laugh, and is constantly trying to get others to laugh with him.  When he is mad he will yell Ma.  It always seems to be my fault.  He will ignore people who have been mean to him and scoot over to play with those who have been nice to him. I always say you can tell if a person has a good heart by Josh’s reaction to them, and his instincts have never been wrong. He is feisty and stubborn.  Josh is the smartest, bravest, ,strongest, most beautiful boy I have ever known.  No matter the sacrifice I would take him as is a million times over. He is truly my greatest love.

Spread the Word to End the Word

 

On March 7 2012  my family celebrated Spread the Word to End the Word day.  The term mental retardation’s slang “retard” has taken on the meaning of stupid.  Many slang terms about race or religion  are completely unacceptable in our culture, however the r- word still remains acceptable.  Most people don’t realize that they are insulting millions of people who have developmental disabilities,  All I am asking you is to think before you speak.  Please go to www.r-word.com and take the pledge to not say the word.

When you use that word you are hurting my beautiful, smart, and silly little boy.   Spread the Word to End the Word.  As a society we can do better.

 

 

 

Hello world!

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 I guess I should introduce myself to those of you that don’t know me.  I am Michelle; a spontaneous, adventurous, creative, quirky, non-judgmental mother of one.
Life most certainly did not hand me an easy hand.  Who would I be if it had? I learned to fight for everything I have and I usually have a smile on my face at the end of my uphill battles.