Friday, September 21, 2012

My Favorite Team

 
 


Josh was wearing a 1p36 deletion syndrome shirt the other day and a nurse asked me why in the world would I advertise his disability.

I understood that she meant no disrespect. She looks at a child with a disability and sees something tragic. She doesn't realize that when I look at Josh I see Josh not a disability.

My first response naturally is to bring support and awareness to his disability. I started to think about that answer. Well duh, I obviously want to bring awareness, but 1p is so much more to us.

1p36 deletion syndrome means family. It means support and comfort. 1p represents strength, accomplishment, miracles, beauty, inspiration, and so much more. How in the world do you explain that to someone who doesn't understand this amazing "special needs" world?

I looked at her and explained, well, it is kind of like rooting for your favorite sports team. You are proud to represent your team by wearing their clothing, watching them on television, going to the games, and cheering with thousands more fans just like you. You love your team. You will support them through the good and bad seasons. Well, that is kind of like our 1p family. We are a big team and we love and support one another."

I am not sure I cleared it up for her, but I thought it was a good analogy.

I don't know what I would do without the support of my "special" family. Josh recently had spinal surgery, (for those who don't know) the outpouring of love I received from our group was amazing. We received well wishes and support by friends and family, but nothing like our 1p group. They understand. The funny thing was I received calls and messages from concerned 1p parents, because of my fb posts. Even though I tried to stay positive many of my 1p parents saw straight through that. They recognized that I was barely holding on and they were there to lift me up.

I never wish for anyone to have to experience a disability. However.....if you do. Embrace it. Every day I get to personally witness a miracle. I was told Josh would never be aware of his surroundings. Josh's last test at therapy showed that he understands what a 6 to 8 year old child understands. That was last year so in some areas he was a year off. That in itself is a miracle. I also get to hear and see miracles from other special needs families. It may not be what we signed up for, but I am so glad to know these amazing people. I feel so blessed to be able to see people with disabilities so much clearer now.

As a former cheerleader I will end in a cheer.

A - W - E - S - O - M - E

Awesome Awesome

AWESOME Are We

WooHoo! Let's go 1p! Now let's pretend I can still do a fabulous jump. lol
 

Wednesday, July 18, 2012

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.

Where do you find help for your special needs child?




I have had several people ask me where their children can get help. I am no expert, but I sure am trying to be. We live in North Carolina and this states services are horrible. I can't wait to move out of this state.

Here are some resources that may assist you in your quest for help.


Top Pediatric Hospital Rankings

These resources can point you in the right direction. However, there are many more questions you need to be asking.

Are you looking to put your child in public or private school?
Will you be able to receive affordable childcare in the area?
Check out parent support sites in the area you are looking at, and don't be scared to ask questions.
What do you want for your child?
How are the therapy centers?
What are you looking for in a pediatrician?
Are there any large hospitals in the area?
Are they training hospitals?
Are the doctors familar with your childs disability?
Are there jobs in the area?
Is the area affordable to live?
Are there special needs activities in the area? (baseball, special equipped parks, sn swimming classes, hippotherapy,etc.)
Do you know anyone in the area?
Do you need a support system?
This is a life change make sure it is right for the entire family.


When you are looking to make such a huge move you need to make sure everything you need is there. We have moved several times and I still haven't found all of the help that I am looking for.

The school system here is an absolute joke, and there are even times I am sick about sending him.
There have been a few incidents that scare me, but that is another post.

Although, there is no way to completely know what you are getting yourself into. There are ways to protect yourself. We made this last move in haste. I did check the area, but the funding for special needs services literally fell apart weeks before we moved. When I checked the area most services were here, and as I was organizing the move that security completely disappeared. Since I can't work, because there are no affordable childcare facsilities we have been stuck in this horrible county. It is a beautiful state, but we can't enjoy it, because it is not designed for children like Josh.

Now before you tell me that you live in North Carolina and your child receives what they need remember our children and families have different needs. Make sure the area has what is best for your family.

Please feel free to comment and ask questions. If I haven't addressed something in this article I will be willing to try and find you an answer.

Have a Blessed Day!




Friday, July 13, 2012

My Silly Green Monster

video

My silly green monster had a blast with our homemade paint.

This was great sensory play. Best of all we had so much fun.

Saturday, July 7, 2012

4th of July Fun


 Josh has never seen sparklers, so I decided to get some this year. He has only seen fireworks once, and wasn't that impressed. He liked the sparklers. He liked the fact that I stood up in the middle of our neighborhood and pulled out some of my high school cheers. I used the sparklers as pom poms and even landed a few jumps.
It made my son laugh and that is all I wanted. Let's face it my neighbors all know I am goofy. They have all heard me make funny noises, sing loudly, and dance all to make Josh smile. I sing silly songs throughout the entire neighborhood just so he will walk with his walker and not scream.
Good thing we are staying in our street when we move. The neighbors are used to us. That is a story for another post.

♥♥Making Memories♥♥

Thursday, July 5, 2012

My son is a ROCKSTAR!!!


Tonight Josh decided he wanted to go sleep after his bath. I thought it was cute he rolled over and covered himself with his towel. He closed his eyes and started to drift off to sleep. I thought I wore him out, but no my baby wasn't feeling well. Two minutes later he was throwing up. My poor pumpkin. He doesn't usually throw up so he was a little freaked out.

I cleaned him up and got him dressed. I wanted to hold him in my arms and snuggle him. I think all Mom's need to feel needed when their baby is sick.  My boy had other plans.


Five minutes after being sick ..... here is my rockstar.
Kids really do make adults look like big babies.

How do your kiddos amaze you?

Thursday, June 21, 2012

I Believe


I believe in God. I have faith that He can and will perform miracles. I know it seems like I can write about negative things, but that is the reality of our world.  I want people to understand the "special needs world."   I know my situation is only temporary. When our 5 weeks of pure chaos is over I know we will be okay and stronger. I have no doubt that with prayer and persistence we will be okay.
Please don't think I want a pity party. I only want you to see what special needs families go through. We don't usually get the tons of money that most people think we do. We are usually the first that the government takes from. The only thing that I ask from you is to pray for my family.