Down Syndrome

Just the thought of a new school year gives me anxiety. Anxiety about the change in routine for my child. Anxiety about having to explain and fight for their needs to a new teacher. Anxiety about starting yet another round of advocating for my child.

While many parents and caregivers have some level of anxiety about a new school year, this anxiety is heightened when you have a child with disabilities.

Every single year it’s like starting over. Even though my child has been in the same school since kindergarten.

Why? Because new teachers, new administration, new EAs and new classroom dynamics often require a new round of advocacy.

While I wish my child would get the support they need based on their IEP, diagnoses or documented needs, sadly this is never the case. With an underfunded, overstretched education system, many kids fall through the cracks.

This is learnpatientadvocacy.com/books/how-to-advocate-for-kids-with... Because without advocacy my child is left behind.

Funding ≠ student needs

In British Columbia, 1 in 29 children has been diagnosed with autism. Knowing there are kids waiting for an assessment, and those aren’t flagged for assessment (primarily girls), the actual number of autistic children is much higher. Now add anxiety, ADHD, dyslexia, learning disabilities, Down Syndrome and other disabilities to the mix and the needs of students is great.

Unfortunately, there’s a large gap between student needs and resources available. This results in a Hunger Games approach to education, with students pitted against each other to access a limited number of resources.

The outcome – a wait to fail approach of providing supports. Wait until a child’s behaviour is too disruptive, they’ve fallen too far behind (if anyone even notices) or they’re impacting the education of others.

Two-tiered system

So, what happens when you have learnpatientadvocacy.com/blog/2021/9/9/why-i-want-to-break-u...? Parents and caregivers are forced to dig into their pockets or tap into lines of credit to hire the resources to support their child.

While this might seem like a simple fix, it adds an additional burden to already overtaxed families. Very few of us have the bank accounts required to pay for the private tutoring, therapy, assessments or even the education our kids need. Yet without getting private support, we know our children will fall further behind.

In the school district my child attends, kids with disabilities have a 54% graduation rate.

I don’t know about you, but I don’t like those odds.

Exodus from public schools

Distance learning, home schooling and private schools are becoming increasing popular options for families of kids with disabilities and complex needs. Why? Because in many cases these kids have too many barriers in place in the public education system.

This can thetyee.ca/News/2023/07/12/Disabled-Kids-Excluded-From-Education from field trips (not enough staff support), limited attendance hours at school (not enough EAs), bullying (unesdoc.unesco.org/ark:/48223/pf0000378061) and other forms of exclusion.

A 2021 bcedaccess.com/2021/07/02/report found that 52% of respondents had removed their child from in-person public education with another 6.7% in the process of removing their child.

Empty tank

If you’ve read this far, you’re likely exhausted. I know I am.

This is the sad reality facing many parents and caregivers as a new school year approaches.

Having spent years advocating, I’m tired. Tired of artificial barriers. Tired of shelling out thousands of dollars for private assessments only to be told the school doesn’t have the resources to support the identified learning disabilities. Then shelling out more money for private tutoring.

But as September nears, I’m putting on my advocacy armour once again.

Why? Because I love my child and will do whatever it takes to fight for them, and other kids with disabilities.  These amazing kids deserve the support they need to go from surviving to thriving.

This is why I’m gearing up for another year of advocacy. I know I’m not alone.

People wear crazy socks to celebrate World Down Syndrome Day and this year, johnscrazysocks.com is working with www.ds-int.org and the ndss.org to johnscrazysocks.com/pages/world-down-syndrome-sock-design-contest. These socks will celebrate people with Down Syndrome and raise money for www.ds-int.org) and thendss.org

Socks for Celebrating People with Down Syndrome Designed by People with Down Syndrome

John’s Crazy Socks is asking the Down syndrome community to help in johnscrazysocks.com/pages/world-down-syndrome-sock-design-contest
. Together with DSi and the NDSS, they are holding a johnscrazysocks.com/pages/world-down-syndrome-sock-design-contest where people with Down syndrome and their families can submit designs. A panel of judges from the three organizations will select the winning design and that will become the Official Sock of World Down Syndrome Day 2024.

John said, “You can design the socks that people around the world will wear to celebrate World Down Syndrome Day 2024. How cool!”

To learn more about the johnscrazysocks.com/pages/world-down-syndrome-sock-design-contest and to enter, johnscrazysocks.com/pages/world-down-syndrome-sock-design-contest
.

“I am so excited about these socks,” said John Cronin, co-founder and Chief Happiness Officer at John’s Crazy Socks. John is not only the leader of the world’s largest sock store, but John happens to have Down syndrome. “I am so happy that we are making these socks for people around the United Sates and the world to celebrate people with Down syndrome.”

Andrew Boys, Executive Director of Down Syndrome International, said, “We are excited to work with John’s Crazy Socks, a company started and led by a man with Down syndrome, to make socks for World Down Syndrome Day.”

Kandi Pickard, President and CEO of the National Down Syndrome Society, said, “We have a long-standing relationship with John’s Crazy Socks. We applaud their commitment to employing people with Down syndrome and other disabilities and the work they do to raise awareness through their business.”

World Down Syndrome Day

In December 2011, the United Nations General Assembly established March 21 as World Down Syndrome Day. Why March 21? Down syndrome is caused by having a little bit extra. All of us humans have 23 pairs of chromosomes, people with Down syndrome have an extra 21st chromosome. Thus, World Down Syndrome Day takes place on the 21st day of the third month.

It is a day to celebrate people with Down syndrome. All around the world, people hold events, parties, and conferences to champion people with Down syndrome. Down Syndrome International organizes World Down Syndrome Day.

Crazy Socks and World Down Syndrome Day

Why do people wear socks to celebrate World Down Syndrome Day? Talk to different people and you get different answers. Some say it is because chromosomes when viewed under a high-powered microscope look like socks. Some say it is because bright, colorful socks reflect the joy and spirit of people with Down syndrome. Some say it is because crazy socks reflect the individuality of people with Down syndrome. All three sound like good reasons to us.

We want people with Down syndrome to design socks to celebrate World Down Syndrome Day. We encourage people with Down syndrome and their families to enter the johnscrazysocks.com/pages/world-down-syndrome-sock-design-contest

#DownSyndrome

Hi, my name is Hafida. I'm here because I have a 17 years old son with Down Syndrome I’m talking about the moms who fought for their kid’s education rights, raised their voices and demanded change in our schools.#MightyTogether

Swim season is upon us.  For my son George, this means heading to the pool to cool off.  Like many skills, learning how to swim took a little longer.   People with Down syndrome often have hypotonia -low muscle tone.  They also can struggle with motor coordination and balance.   Learning to swim is important as we live in a warm climate.  After many years of lessons, George eventually learned to swim and competed in Special Olympic’s swim races.

Later George braved the diving board, and then the high dive at the local pool. Each year at the start of the season there is usually some regression until George remembers all the movements.  This year seemed to be an exception.  On the first trip to the pool, George went straight for the high dive.   He climbed the ladder, followed the lifeguard’s rule of waiting until all swimmers were clear, and jumped right in. However we faced a new challenge.  As George got in line to jump again, I saw a younger boy who had cut in line in front of him. Then he did it again.  This boy cut in front of many kids, but George was an especially easy target.   George’s older brother came over and told the boy to stop.  But, what would George do if his big brother wasn’t around? I worried.

On our way home, we tried to talk to George about taking turns and not letting people cut in line.   George didn’t want to talk to us about it.  I figured it would just be up to luck how the people in the line would respond. I mentioned this incident to his Speech and language pathologist.  Speech therapy is not just sounds and articulation.  It also includes pragmatics- how do we socially communicate with those around us.  She immediately agreed to work on this.    “How did you feel when this happened George? Was this OK?”   she asked.  George said that it was not. I was surprised to hear that he really did care.  He just needed some strategies.   They started with a longer phrase, but then shortened it to a simple “Don’t cut.” Next, they practiced saying it in a forceful rather than a questioning tone.  Standing up for yourself and being assertive is hard for anyone.   But just like learning to swim, I know in time, he can master this too.

This summer the alarm is set for 5:45 AM. Not by choice. I am not a morning person in any way. I enjoy sleep.

But I get up every day at that time to make sure my son Ben gets his medicine, gets dressed and is in the car by 6:15 to drive 10 miles, to the Jr/Sr High School to take part in the summer sports weight program.

Young men and women regularly get up early to work on their fitness so they can become stronger athletes.

Ben does not participate in everything. He is not a fan of the parking lot warmups, though sometimes I see him doing the stretches by the side of my car.

This is our second year of summer weights. They go every morning at 6;45 Monday through Friday. After warmup they split up and half go into the weight room and the other half go out to the football practice field to do agility drills.

Ben loves the weight room. He joins his group when they go outside but usually would just sit on the picnic benches at the nearby concession stand to watch. The grass is usually wet, the tractor tire that they flip is really big. I get how this is uncomfortable for a 15-year-old with Down syndrome and autism. Really a sensory nightmare. But he pushes through, because he loves the weight room, the loud music, and the time with peers.

While he is doing the weight program, I try to get in a good walk around our small town. A day not long ago, as I walked toward the school, I noticed Ben’s group was outside. I looked to the concession stand to make sure Ben was in his usual spot. He was not. Sometimes he would run around the concession stand, when the others were doing something that was too much for him. I waited but he did not come around from the other side of the building.

Mom instinct kicked in and I stared scanning the area for him. It did not take long to find him. In the middle of the group of boys. I was happy that he was with his peers instead of watching from the sideline. Two by two the boys would lift and flip the tire 3 times, then move to the back of the line. Ben was getting close to the front. I watched to see what would happen.

Ben was paired with a senior. One who did not need a second person to flip the tire. But as the two boys ahead finished their flip, Ben moved up and helped flip the tire. Ok, he didn’t help much. But he was there, and he touched the tire. Something I was not sure I would ever witness. It brought tears to my eyes.

One year and eight days. That is how long it took from the first time Ben witnessed the tire flipping to feel comfortable enough to participate.

Inclusion. We talk about it a lot. Ben often can not do exactly what his peers are doing. Especially things that are challenging or sensory demanding. But once he becomes comfortable, he enjoys some of the activities as much as anyone.

When we ask Ben if he wants to try something new, he will almost always say “NO!” without really listening to what we are asking. Our policy has always been that he has to at least try new things. If he still does not like it after 2 weeks, he can quit. This generally applies to things we think he will like. Like track. The first 2 days of the season are always rough, after that he loves it.

Something similar happened with choir. When he moved to junior high and got a new vocal teacher, he would not sing with his peers. He would go, learn the songs, participate in some of the activities, but not actual singing. Then at the beginning of this last year he decided it was ok to sing along. It took a full year.

Read the full story: wnwtwf.blogspot.com/2023/01/the-speed-of-inclusion.html