Happy Sunday, everyone, but more importantly, Happy World Down Syndrome Day! Today, I am SO excited to welcome Alec Kruger and his family to the blog to share their story in honour of this very special day. Tarissa, Alec’s mom, reached out to us via email to see if we could highlight this day, and we thought it would be even better for her and her family to take over the blog and share their beautiful story with you.
Take it away Alec and family!
We are Daryl & Tarissa Kruger, and we live in Langley British Columbia with our 4 children – Hudson 10, Alec 9, Llewyn 7 and Hendrix 5 and our Bernedoodle puppy Gandalf. We also own and operate an Autobody Repair business (On Line Collision) in Langley. Between running a business, raising 4 kids and a new puppy we are a busy family, and we would not want it any other way!
To start here are some facts about Down Syndrome:
Down syndrome is a genetic condition that happens right at conception, it is when there are 3 copies of the 21st chromosome.
Did you know there are 3 types of Down syndrome? Trisomy 21 is the most common in 95% of people with Down Syndrome, where every cell in the body has 3 copies of the 21st chromosome instead of 2. Translocation Down Syndrome affects 3% of people with Down Syndrome, where each cell has part of the 21st chromosome or an entirely extra one but it is attached to another chromosome instead of being on its own. Mosaic Down syndrome affects 2% of people with Down Syndrome, it is the rarest type where only some cells have an extra 21st chromosome.
Some physical traits of Down Syndrome:
- Flattened nose bridge.
- Almond-shaped eyes that slant up.
- Small ears.
- Short neck.
- Flatten back of the head.
- Tiny white spots on the iris of the eyes.
- Small hands and feet.
- A single line across the palm of the hand.
- Short & wide fingers.
- Low muscle tone.
- Shorter in height 5’2” average for males, 4’6” for females.
- Space between the first and second toes.
Down Syndrome Statistics:
- 50% of babies born with Down Syndrome have a heart defect and will need heart surgery within the first 6 months of life.
- Kids with Down syndrome are more prone to hearing loss, Leukemia, vision problems, infections, Hypothyroidism, gum disease, dental problems, epilepsy, digestive problems, celiac disease, respiratory concerns, Alzheimer’s. Not every person with Down Syndrome has all of these. My son has a slight hearing loss and has a slower digestive system, and respiratory issues.
- 1 in 781 babies are born with Down Syndrome making it the most chromosomal condition. As of 2017, there are 45,000 people that have Down syndrome living in Canada.
- In the 1900s the life expectancy for a person with Down Syndrome was 9-11 years old. Today it is 60-70 years old.
- 80% of babies with Down Syndrome are born to women under the age of 35 because this age group gives birth more frequently.
- Kids with Down Syndrome do best in an inclusive learning environment, & typical kids do best when they learn about diversity, kindness, & friendship at an early age. Inclusive teaches and benefits everyone.
- Individuals with Down Syndrome are not always happy, although that is the generalization that people make. They absolutely can be happy. They also get angry, grumpy, tired, selfish, stubborn, frustrated just like the rest of us.
- Many adults with Down Syndrome attend college, have jobs, drive, live independently, marry, become actors/actresses, models & contribute to society in a positive way.
We had a surprise when Alec was born because we did not know he had Down Syndrome. It was a roller coaster of emotions for months after he was born. We were and are fortunate Alec has no major health concerns and his heart is healthy. I will be honest; it was very difficult at first to accept the fact that our son was born with Down syndrome; I was full of fear and questions. What do we do now to make sure he can reach his full potential? Will he crawl and walk? Will he talk? What is he going to be like when he is older? Then I was full of sadness, he might not be able to drive, he might not be able to be a father and husband, he might not be able to get a job, he might not be able to live independently. Then the jealously set in, why do I have a child with a disability? Then the grief set in, grieving the child I thought I was going to have while pregnant. Finally came acceptance, as I learned who my son was and the love he unconditionally gave me I fell in love with him as I have with all my children. I started to see the joy this human would bring to me and my family. He was going to teach us so much!
At the age of three months Alec received early intervention with the Infant Development Program. He had an Occupational Therapist, Physiotherapist, & Speech Language Pathologist that would visit him monthly. This support carries on till the age of three. When Alec was three years old, he was diagnosed with Autism and started more intense therapy. Alec needs support in most of the things a typical child can do; sit up on his own, crawl, walk, talk, feed himself, dress himself and self care. Alec would only eat pureed foods till he was the age of 5, It took a year and a half of food therapy for him to start eating solid foods. Same with toilet training he was still wearing diapers at the age of 5 and with the help of the therapy programs funded but his autism funding he successfully toilet trained. Alec’s diagnosis of Autism provided us with government funds of $22,000 a year for therapy till the age of 6, then $6,000 a year till the age of 18. Unfortunately, Down Syndrome kids do not get this funding even though most kids with Down Syndrome would greatly benefit from having this extra support. It is financially and emotionally difficult to pursue all therapy avenues to help our children and we will help fight for equal opportunity funding for all children with special needs.
Alec goes to a public school with his 3 brothers and other typical children, it warms my heart that he is so accepted and welcomed by all his peers and teachers. He has amazing SEA’s that help guide him through his day. He needs help with most things at school and needs to be watched at all times. He has made such a positive impact on 500+ students and teachers the last 4 years at school. He does so well at school and loves having the routine and structure of school. Alec gains so much by being included with typical children, but we have also found the children have learned so much by being around a student like Alec.
Alec’s favorite thing to do is to give hugs; if you have never been hugged by an individual with Down Syndrome you have not been properly hugged. He also likes to watch movies on his iPad, go swimming, go to the movies and ride his tricycle at school. He has such a love for water that he will immerse himself into any that he finds puddles and birdbaths included, lol!!
Looking back, I wish I had sooner seen Alec’s greatest gift was his differences and what it could teach us. Alec is not defined by Down Syndrome, instead Alec projects a sphere of positivity and love to all that are able to meet him. Alec teaches us all empathy, patience and kindness and has been able to spread this to the benefit of the many children he has engaged at school.
I know now Alec has been the best thing to happen to our family. He is the most genuine human and has provided life perspective to myself, my husband and our children that have shaped us to become more compassionate human beings. We all lead fuller and richer lives by realizing the life lessons he teaches us everyday. I have gained a passion to bring quality of life to my son, others with Down Syndrome and all children that need extra support. It is important that these children have a voice and are given every opportunity to live life to their full potential. I will be my son’s voice when he cannot, and I will fight for change to help all these children.
It has truly been an honour taking over Jillian’s blog! Thank you so much for letting us share our story and helping us spread awareness about Down Syndrome and celebrating World Down Syndrome Day. In honour of World Down Syndrome Day wear your mismatched socks to show your support.
Love, The Kruger Family!