A few years ago, I became a special needs mom. Now I view life through different lens. Though I understand one category of special needs, I do not understand the challenges other families face. Recently, I had a chance to chat with Karin, a single mom of three whose middle child is a boy with Down syndrome. I enjoyed learning more about the issues her family faces. It was also heartening to know that, despite different challenges, all special needs moms deal with many of the same things and can encourage each other regardless of diagnoses.
A Little about Down Syndrome
I’d venture to guess most of us know that the challenges of Down syndrome come from an extra chromosome. We recognize the difference in facial features, stature, and voice, but probably know little else. I don’t have room for a full workshop on Down syndrome here, but I can share with you a few things I learned.
Karin shared that because of their flatter facial structure, kids with Down syndrome get a lot of sinus infections and similar illnesses. They also tend to have a weaker immune system. Because of this, recovery takes longer when they get sick. Down syndrome kids have a higher rate of leukemia compared to other demographics.
Kids with Down syndrome also face cognitive and speech delays. At six, Karin’s son is still mostly non-verbal. Children with Down syndrome also have low muscle tone. Low muscle tone affects basically all motor skills, both fine and gross. These children may require more time to get out their words or accomplish a task, among other things.
Karin said many children with Down syndrome share a mischievous bent, including her son Ryan. He’s also an escape artist, requiring constant supervision. Not only will he run away, but he will run toward danger without realizing it. Even with all of the challenges he faces, Karin said one thing she’d like to tell people is that Ryan is more like other children than he’s different.
Abortion and Down Syndrome
If you do a Google search for abortion statistics of Down syndrome babies, you will discover that the abortion rates are disconcertingly high. On average, the rate is around fifty percent, which is alarming enough. However, when you consider pregnant women who are told their babies have Down syndrome, the statistic skyrockets to 80% on the low side and over 95% in some population areas.
I asked Karin if she’d ever met a pregnant mom who had been told her child had Down syndrome. Karin had not, but said if she were to meet a woman in that situation, she’d invite her to meet Ryan. She’d explain that Ryan has happy times and sad times. He gets frustrated and excited. Ryan and all his friends with Down syndrome are kids first.
After the Diagnosis
Doctors told Karin Ryan’s diagnosis at birth. Though Karin loves her son fiercely like mothers do, there are still times of grief. Special needs parents grieve the loss of the child and life they expected. Karin says she went through the typical stages of grief from denial to acceptance, but sadness sometimes still surprises her. These moments often come when she observes Ryan around other children his age. Watching other six-year-olds play reminds her of the reality of Down syndrome’s challenges.
What has helped Karin cope? In the beginning, she did a lot of research to learn about Down syndrome—what she and Ryan would face and how she could help him. The National Down Syndrome Society was a great source of information. Karin looks to God for strength and frequently reminds herself that Psalm 139:14 (“I will praise you, for I am fearfully and wonderfully made.”) applies to Ryan just as much as any other child. She also finds refuge in encouraging music.
I asked Karin what she would recommend for parents with children who have recently been diagnosed with Down syndrome. What resources are helpful? What kind of therapies benefited Ryan?
Karin suggests parents spend time at the National Down Syndrome Society’s website, www.NDSS.org. She also recommends the book Babies with Down Syndrome: A New Parent’s Guide by Susan J. Skallerup. Both of these resources offer helpful information as parents learn about Down syndrome and what will come.
As for therapy, Karin said Oral Placement Therapy helped Ryan. This method, named by Sara Rosenfeld Johnson, helps children strengthen their mouth and jaw to help them with talking and eating. Ryan’s speech apraxia has improved with the tactile cueing therapy created by Deborah Hayden of the PROMPT Institute. Karin recommends parents look for early intervention programs in their area to consider options available for their children.
Children with Down syndrome generally benefit from structured environments. This takes a lot of energy on the parent’s part, but tends to make days go more smoothly overall. Throughout the day, parents and children incorporate working on various skills together: fine motor, gross motor, speech, occupational (daily life), etc. Karin’s biggest tip: If something isn’t working, don’t be afraid to try something else.
How Can I Help?
As a special needs mom who knows how exhausted Karin must be from vigilant and constant supervision, I wanted to know how people can reach out to families who have a child with Down syndrome. Here are Karin’s suggestions:
- Offer to watch the kids so parents can have time to do errands or go out for a quiet cup of coffee and recharge.
- If the children require such intense care that the parent cannot leave or you are unsure of your ability to watch them alone, offer to go over to the house. Play with the children while the parent accomplishes something else in another room.
- Remember the weaker immune system and longer recovery time of children with Down syndrome when you’re deciding where to take your germs.
- Volunteer to do everyday household tasks that may get neglected: shoveling a sidewalk, mowing the lawn, raking leaves, etc.
- Take a sibling on a play date or outing. Karin mentioned this would be a big blessing for siblings who usually don’t get to have a “normal” play time.
- Give a helping hand out and about. If you’re not sure if a parent wants your help, kindly ask, “May I offer you a hand?” or “Would you like some help?” If you see one child having a meltdown, consider offering to hold the sibling’s hand and walk with the family to the car. See a child bolting from a parent? Help catch him or stay with the sibling so the parent can get the escapee.
- Don’t judge parenting skills. Life for the special needs parent is hard enough without enduring glares and pointed comments.
- If you’d like to educate your children about Down syndrome, consider watching the YouTube video “Just Like Us—Down Syndrome.” It’s a great conversation starter.
Get creative. I’m sure you can think of other helpful things to do. Most importantly, we can remember that Ryan and other children with Down syndrome are just kids. Offer a smile and acceptance. Remember, they, too, are fearfully and wonderfully made in their Creator’s image.
Want to homeschool your child with Down syndrome? You can! Stop by our blog for a heart-to-heart post from Felice Gerwitz of Ultimate Homeschool Expo. She shares tips she used to homeschool her own son. You can also browse other posts in our special needs category (under “The Challenge”). Find Felice’s article here.
As the Manager of Social Media at Home Educating Family Blog, Jenny enjoys interacting with homeschoolers. She is also excited to bring special needs homeschooling to a mainstream magazine. She and her husband Greg are learning to view life through the eyes of their sons–one with an Autism Spectrum Disorder and one with a propensity for pretending. You’ll find lots of interesting stories about finding grace in autism over at her blog, ManyHatsMommy.com.
© 2013 by Home Educating Family Association. All rights reserved. Used with permission. Originally published in 2012 Issue 4 of Home Educating Family Magazine, the publication with the most meaningful discussions taking place in the homeschooling community today. Visit hedua.com to read back issues and for more articles, product reviews, and media
Publication date: March 14, 2014