Now What?

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