September 10, 2009

Survey About Down Syndrome


I was sent a survey today by a student who wanted to learn about the development of babies with Down syndrome. As I responded to her questions, I realized that she was asking some of the same things that others have also been wanting to know. I am posting her questions and my answers in case they are helpful to others who may be wondering the same thing. Here goes:

Chase’s age: six months old now.


What impact has Down syndrome had on his biosocial development? I read in your blog that he has to wear Hip Helpers to hold his hips in place in order for him to develop his crawling and walking skills. Would you like to share any other stories contributing to his physical health and development? I also read that he attends physical therapy?

  • Chase gets occupational therapy and physical therapy both once a week (one session of each) and will start speech therapy once a week this next month.
  • We do therapy exercises with him every day ourselves
  • We use toys very purposefully in order to advance him through gross motor skills and fine motor skills development
  • We use a surgical brush to brush his arms/legs and we do joint compressions in order to stimulate the nerves in his muscles/joints so to prevent sensory processing problems.
  • We use a bumpy rubber toothbrush-like thing (a NUK brush) to stimulate his tongue/gums/mouth muscles
  • We feed him in a way to exercise his motor skills around his mouth
  • (on the developmental toys page, I go through some of the toys we use to stimulate Chase, etc.)


How does Down syndrome seem to affect Chase’s cognitive development and what do you and others do to improve this?

  • Because he is so young, we do not see a lag in his cognitive development just yet. But we do try to stimulate his senses in every way possible to do everything we can.
  • I am breastfeeding for at least a year in order to give him the max benefit possible as breastmilk is shown to raise IQ levels
  • We are starting to teach him sign language to reduce frustration that will be associated with his expected late start in speaking. Sign language will help boost his vocabulary and will give him an extra leg up.


How has Chase’s psychosocial development been affected?

  • I don’t think it has been affected at all. (or at least not yet)


How has your personal development and that of other family members been affected?

  • We had a post-natal diagnosis so we had a period of grieving after he was born as we had a sudden massive shift in expectations of what this baby would be like. That period of grief lasted despite a 100% acceptance of the diagnosis, but is going away with time. (I think we will always feel a sadness from time to time though – not because of a disappointment in who Chase is, but because of our inability to make his life easier for him and remove certain limitations)
  • As mother, I spend a ton of time researching the syndrome – what to expect, what kind of appointments to make, what different medical issues mean, and how to best help him. Between this and therapy, it is a bit all-consuming from time to time.
  • Huge newfound appreciation for anyone with disabilities or “differences.” Also, a deeper appreciation for what mothers go through who have had a miscarriage, a death of a child, or a child with any kind of issues.
  • Shift in importance from being career driven and superficial to simply an appreciation of life, love, and all of God’s gifts.


What advice would you offer to prospective parents who may have a child with Down syndrome?

Each baby with Down syndrome is different and unique in their own way and you will love your child more than you would ever imagine! Despite having some extra challenges, your baby will amaze you, teach you, and fill you will the most unbelievable amount of joy. Join your local Down syndrome association and make connections with other parents of kids with Down syndrome. Form a strong support network and stay close to your partner. As tough as things seem at first, they get better. And your baby will be one of the best things to every happen to you!

5 comments:

  1. This is great info, thank you for sharing. I am visiting from Adgitize. Have a good weekend.

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  2. Awesome post. Can I ask where you got all the ideas for interventions (NUK brush, toys, hip huggers, etc.)? It sounds like you have a fabulous EI team.

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  3. TUC, We really have been blessed with two great therapists! (OT and PT) They are constantly recommending therapy tools or toys that promote the specific skills that we're working on. The momblogs relating to Down syndrome are always a great resource and I steal ideas for Chase here and there too!

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  4. Thank you for sharing this information. I've been blessed with two healthy children but have had 5 miscarriages and one baby die at birth due to neural tube defects. I can't imagine the challenges you face each day and bless you for sharing your triumphs and struggles and for being a great mom to Chase.

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  5. Hi :) I'm visiting through Adgitize. Chase is a couple of months younger than our youngest grandbaby and Trent looks to be about a year older than our oldest grandbaby. This is great information you are sharing. You appear to be a very informed parent so Chase and Trent are very lucky little boys. The boys are just so adorable! Such beautiful brown eyes :)

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