You Have a Family Member With Down Syndrome, So Now What? Part 1

Copyright © 2012, Stephen Hawley, all rights reserved.

Aside from major issues like heart defects, the one single thing that persistently affects the life of a child with Down syndrome is low muscle tone.  Babies and kids with Down syndrome tend to be floppy.  Muscle tone is how muscles will continuously contract to keep in a neutral state.  When Alice was an infant and toddler, holding her was like holding a sack of potatoes with free will.  Whereas many babies could be held with one hand, you had to use two with her.

I did a test with Alice and her brother – I had them both lie down on the floor and relax.  This is what I got:

Alice On Her Back

Although the pictures aren’t great, you can see pretty clearly that Alice’s shoulders have dropped right to the floor and Stuart’s are up from the floor.  Stuart’s muscle tone is keep his shoulders up.  Alice’s lack of muscle tone lets hers drop right to the floor.

This makes a huge difference when the child is an infant.  Think about this – if your body naturally spreads out when you’re lying down, it is significantly harder to do things like lift your hands up to grab a toy or put your hands in your mouth.  Both of these actions are considered developmental milestones.  If you have low tone and no assistance, these will happen later.

Our Early Intervention physical therapist suggested rolling up a towel and putting it under her shoulders and hips on each side of her body.  We quickly found that while this worked, it didn’t work well.  Towels compress easily and we spent a lot of time re-rolling them.  Both of us being engineers, we decided we could make this much better.  You can too.


  1. Two knee high nylon stockings
  2. Two long tube socks
  3. 10 pounds of rice (give or take)


    Fill each stocking with half the rice.
    Tie a good knot in the stocking.
    Put each stocking into a tube sock.
    Tie a knot in the end of the sock (or sew it shut).
    Socks go on each side of the baby, lifting shoulders and turning hips in.

    How to Use

    During play time, put the socks under each side of the baby to prop her up.  If you have the kind of toy that is a play mat with half hoops that dangle toys over the baby, this is perfect to use with the props.  The props should make it easier to reach up and grab at toys (milestone) or bring toys to center line (milestone).

    Turning the hips in will also get the child’s hips more used to being turned in which will make a difference with learning to crawl (milestone), sitting up (milestone), pulling up (milestone), cruising (milestone), and walking (milestone).

    When you see the kind of snowball effect you can get with something so simple, why wouldn’t you use it?

    If your child has a physical therapist, you should check to make sure that they’re OK with this.

    As a final note, I want you to always keep in mind: the best therapies are the ones that get used.  If this doesn’t fit in with your parenting (or the parenting of the child’s caretakers), don’t try to make it fit in.  Find something else that does work.


    You Have a Family Member with Down Syndrome, So Now What? Part 0

    Copyright © 2012, Stephen Hawley, all rights reserved.

    I’ve been thinking about doing this for some time.  One of the things that happens when you have a new family member with Down syndrome is that you want to do something–anything–to make it better and you don’t know what to do.  Are you going to reach in and remove 33% of the 21 chromosome in every cell?  No.  At least not yet.  Are you going to send the parents a copy of Welcome to Holland?

    Instead, I’m going to offer you a dozen things over the next year that you as relatives or parents can do for your new family member with Down syndrome.  These are all crafty things and most of them are easy (if not trivial), cheap, and effective if used consistently.  Many of these were suggested by our case worker or physical therapist from our local Early Intervention program and we either refined them or expanded on them.  After the first year, our case worker said, “when are you going to write the book?”  For years now, my inability to find or make acceptable illustrations has stopped me.  At this point, I’m giving up on that and will be drawing things on my own.

    One thing to keep in mind is that the best tools are worthless if they’re not used consistently, so before you launch on a weekend binge of making them all, make sure you talk to the parents and the EI staff to see if what you’re making makes sense for this child.

    Please share these, but do please give credit where credit is due.