Saturday, December 23, 2017

Some weird facts about VCF

One of the greatest things about having a genetic disability is the fact that I age slower than other people my age because I am missing a small chunk of my twenty second gene. I have never suffered from a mental illness or been diagnosed with depression or schizophrenia.  Most adults with VCFS develop depression in their late teens early twenties.

I never did. The only thing that I ever struggled with was getting (and keeping) a job because employers were willing to give me a chance because of my disability. I tried employment services many times but it wasn't a success. Nowadays I volunteer twice a week to keep busy. I love to volunteer because it gets me out of the house and gives me something productive to do. I also love to clean and keep things organized.  I am very intelligent, witty and compassionate. I love to cook, read and sing (although I prefer to sing when I'm by myself). Having Velo Cardio Facial Syndrome makes it hard to understand math and logic and cope with stressful or scary situations.

I also don't do well with change. Change freaks me out. The upside of having VCFS is that I can tell time, walk and talk, see and hear, and get along well with others. I used to be extremely insecure about my birth defect because my brothers and sister could do things that I couldn't do like drive a car, and that drove me crazy. I envied them for years until I became a Christian. When Jesus came into my heart- he flipped a light switch and made everything in my life good again. For the first time in my life I felt happy and at peace with myself. I was no longer ashamed of who I was. I slowly learned how to accept my weaknesses by realizing that this was who God made me. I was born different for a reason and that reason was to glorify God with my life. I still have my good days and bad days but I am no longer striving to be normal because normal is overrated.

Tuesday, September 12, 2017

`` My experience growing up with a learning disability Part Two".

When I was six years old, my parents had me genetically tested because I was developmentally delayed. They took me out of school in the middle of the day and drove two hours to Sick Kids Hospital in Toronto. A nurse scoped my throat and did some blood work to find out what was wrong with me. After a few hours of waiting, my parents sat down with a geneticist and She told them that I had Velo Cardio Facial Syndrome. They were relieved because they finally knew what they were dealing with and they were able to move forward and plan for the future. 

When I was younger- crawling, walking and talking were challenging for me because my brain was not developing as fast as other kids my age. I didn't learn how to walk until I was 2 1/2 years old. I was a toddler with the mind of an infant. I could clearly say "hi" at 10 months old (and communicate my likes and dislikes) but without structured speech.

I nursed well and grew at a satisfactory rate. However, I was unable to roll over until 9 months of age and sit unsupported until my first birthday. I had the mentality, sociability and dexterity of a normal 19 month old but my gross motor skills were that of an 11 month old.

Saturday, September 9, 2017

"What People should know about VCF".

Velo Cardio Facial Syndrome is a deletion of a small segment of the twenty-second chromosome. It varies from person to person. Some have it light while others have it more severe. Many adults with VCFS develop a mental illness later on in life including Depression, Anxiety, Bipolar Disorder and Schitzophrenia. 

Signs and Symptoms: 
Cleft Pallet (usually of the soft palate (the roof of the mouth nearest the throat which is behind the bony palate)
- Heart problems
- Facial abnormalities
- Eye problems
- Feeding problems (food coming out of the nose) 
- Middle ear infections
- Low calcium due to hypoparathyroidism (low levels of the parathyroid hormone that can result in seizures)
- Immune system problems (which makes it harder for the body to fight off infections)
- Differences in the way the kidneys are formed or how they work
 - Weak muscles
- Differences in the spine such as curvature of the spine (scoliosis) or bony abnormalities in the neck or upper back
 -Tapered fingers. (Children are born with these features)
- Learning disabilities
- Developmental delays
- Communication and social interaction problems
- Struggles with Math and Abstract reasoning
- Hypersensitivity to cold.
- Hypersensitivity to light and sound.

Friday, September 8, 2017

"My experience growing up with a learning disability Part One".

When I was eighteen months old, my Dad noticed that there was something very odd about me but he couldn't quite put his finger on it. I wasn't reaching my milestones like other kids my age. I saw many doctors and specialists but nobody had any answers as to why I was developmentally delayed.

My parents began to wonder if I was hearing impaired or had CP. I could talk at age 4 1/2 but everything came out jumbled because the muscles in my throat were not closing properly; causing all the air to come out through my nose rather than my mouth. Along with speech difficulties, I also had feeding difficulties too. I couldn't eat hard candy or meat without it getting lodged in my throat. 

In the fall of 1991 my parents had doubts about putting me in a public Kindergarten class because they worried that my limitations would encourage frustration, fear and ridicule from my peers. They considered homeschooling me to protect me from the outside world, but changed their minds after having a brief consultation with the family doctor. He insisted that it was a good for me to go to school, as long as I had a speech therapist with me at all times. My parents finally agreed to let me go to school. I was a very affectionate, trusting and sensitive child but I struggled to learn. I could recite my ABC's and nursery rhymes, sing songs, tell stories and do an impressive somersalt but not copy letters, numbers or shapes.

I had muscle weakness in my right hand and couldn't clasp a pair of scissors.