Day 16 to Day 22 of 365 Days of Me:

I’m a little behind on my blog but you haven’t missed much. I have just been going to school, coming home, following my daily routine and starting all over again. I did have a three-day weekend, though. I relaxed, my mom and dad took me to the mall and then I played with my toys and looked at my books.

In case you do not know me very well, I thought I would let you know a little more about myself!

What a Chromosome 18q Deletion Means in my Life

 

It means I am missing a piece of the long arm of my 18th pair of chromosomes.

It means I was born with a right, unilateral cleft lip and complete cleft palate.

It means I have had 3 surgeries to repair my cleft lip and palate.

It means I was born Deaf. I cannot hear anything below 90 decibels (like a train whistle or jackhammer).

It means I wear hearing aids.

It means I still cannot hear as well as a hearing person.

It means I have delayed myelination.

It means I am intellectually and developmentally delayed.

It means I am smaller than my peers.

It means I have attention deficit hyperactivity disorder.

It means I have autism.

It means I have epilepsy.

It means I don’t make eye contact.

It means I have sensory processing disorder.

It means I need sensory input.

It means I carry a sensory toy wherever I go.

It means I chew on my toys.

It means I pull on my shirts and sometimes stretch them out and tear them.

It means I don’t sit still.

It means I kick my right leg up and down while sitting in a chair.

It means I don’t like wearing socks and shoes.

It means I might bang my head on a hard surface.

It means I have trouble sleeping.

It means I cannot talk.

It means I cannot tell anyone when I am feeling sick or hurt or frustrated.

It means I make humming sounds.

It means I still wear pull-ups.

It means I need help with eating, bathing, grooming and dressing.

It means I have trouble seeing.

It means I need help walking in unfamiliar environments.

It means I can only tolerate walking short distances.

It means I might drop to the ground because I need to learn about my environment.

It means I don’t like large crowds.

It means I use a wheelchair.

It means my wheelchair is my security or “safe place” when I’m anxious.

It means I have about 12 different doctors.

It means I am afraid when I go to the doctor because I don’t understand what he/she is going to do to me.

It means I must be sedated for most medical procedures.

It means I need special education.

It means I have a special teacher, paraprofessionals and several therapists who help me.

It means people tend to stare at me.

It means some people don’t understand me.

It means some people are afraid of me.

It means I have difficulty making friends.

It means I am sometimes forgotten or excluded.

It means my Mom and Dad will have to take care of me for the rest of my life.

 

It also means I am a very sweet girl.

It means I have curly, brown hair.

It means I have green eyes.

It means I have a contagious smile.

It means I am innocent.

It means I don’t know how to hate.

It means I love unconditionally.

It means I am full of joy.

It means I am smart.

It means I understand some sign language.

It means I am funny.

It means I might pull your hair or necklace if I think they are pretty.

It means I have been riding horses since I was one year old.

It means I like car rides.

It means I like to swing and spin around on a swing.

It means I like to ride horses.

It means I like to swim.

It means I like the beach.

It means I like to surf.

It means I ride go carts, roller coasters and any fast, exciting theme park rides.

It means I like toys that are squishy.

It means I like toys that light up and spin.

It means I like books that play music.

It means I like Cheetos, especially Chester’s Butter Puff Corn.

It means I like pretzels.

It means I like spaghetti.

It means I like cheese enchiladas.

It means I like chocolate cake.

It means I like peanut butter cookies.

It means I have been on the local news and in the newspaper.

It means I have met and know some famous and wonderful people.

It means I am a Special Olympics Texas Athlete in aquatics.

It means I have won several gold and silver medals.

It means I can run a 5K and half marathon in my running chariot with my mom and dad.

It means my mom wrote a children’s book about me called My Friends Call Me Sam.

It means a program called Special Buddies in my school district was created because of me.

It means I was the first female with multiple disabilities to be on the pep squad at my junior high school.

It means I was the first female with multiple disabilities to be on the JV dance team at my high school.

It means my mom and dad love me VERY much.

 

Not every person with a 18q deletion shares the same characteristics or outcome. Some people with 18q deletions can hear, talk and go to regular school. It just varies from one person to another.