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You Have a Family Member with Down Syndrome, So Now What? Part 7

Copyright © 2012, Stephen Hawley, all rights reserved.

More writing about communication.  This will be a topic for which there are no instructions.  Instead, it’s going to be nearly all prose.  As early as possible, start sign language with your child.  Seriously.  Make it a part of your life.  Alice showed an early strength in language: her first word, ‘up’, came on line at 8 months.  Because of this we did something that at our ages was a terribly hard thing to do: learn a new language.  Get yourself into an ASL class (or a class for sign language that is appropriate for your language) and dig in.  Many hospitals with birthing centers offer classes in baby sign.  Go ahead and take on.  Meet with other parents and practice.  Practice with your child.  Practice with your spouse.  Practice with your other kids.  Practice, practice, practice.  Here is a short list of words that you can start with:

  • eat/food
  • drink
  • milk
  • cereal
  • mommy
  • daddy
  • baby
  • diaper
  • more
  • i love you
  • silly

This is a nice list to start with – easy and you should be able to get these in no time.  Use them all the time.  Say the word and sign them.  Your goal is to provide a kinesthetic highlighter for your child.  Maybe your child will speak on time, maybe not.  Speech is not language, however, so you provide whatever means of communication mechanisms you can because both speech and ASL build language.

There a number of upsides to this. Let’s start with this:

This is Alice, from today.  I took out my camera and asked her to sign “I love you”.  This is one of my favorite signs.  It’s an ASL acronym, being a combination of I (pinky up), L (thumb and forefinger extended), and Y (thumb and pinky extended).  Alice also is quick to remind people how much she loves them.  Sometimes it’s a game meaning “pay attention to me” or “don’t be angry with me” but a lot of the time it is genuine.

In addition, in a child with is late to the speech table or with a child whose speech is indistinct (and guess what – when you have trisomy-21 dictated low muscle tone, you can bet you’ll be in that camp), ASL is a true gift.  You’ll get a picture of what’s going on in the head of your child, something that you would otherwise miss entirely.  One morning at breakfast, Alice told me that her uncle and a pig were in the back yard.  Not bad for a non-verbal toddler.  In addition, if you can communicate at this level, you’re giving your child both receptive and expressive language.  Without sign you will probably only have receptive language.  ASL is also a silent communication tool that you can use to get your point to your kids from a distance.  This was an unexpected boon when Alice decided during a church presentation that she should get up and walk away.  I caught her eye and signed, “SIT. NOW!” (and with that emphasis, trust me) and she plopped right down on her bottom.

Finally, one of the terrific advantages of ASL is that it goes wherever your hands are.  Other augmentative communication tools, including our Contextual Communications Board, are cumbersome by comparison.  Even with Alice’s stroke affected gross and fine motor on one side and her low muscle tone, her sign was wonderful.  When it was early on, Alice’s sign had all the characteristics of baby talk: somewhat indistinct and requiring a parent to understand.  For example, at one point her signs for mom, grass, color, water, and eat/food were nearly indistinguishable, but we could tell and context also helped.

Now, in our house, we didn’t use ASL.  We used Pidgin Signed English (PSE).  This is a variant of ASL that uses English word order and ASL signs, but none of the cruft of of Signed Exact  English (SEE), which includes all the verb endings and articles.  Remember, it’s all about communication and you’re speaking along, so even though the signs aren’t 100% redundant, your child is getting several levels of communication at a time.

There are a few downsides.  The first is that if your relatives don’t know ASL, you’re going to have to act as an interpreter.  Next is that your child may neglect syntactic glue that isn’t used in ASL when he starts speaking.  This could give other people the impression that he isn’t as bright or expressive as he really is.  This is a shame.  Finally, you may have transition problems in preschool and school as there is no guarantee–even if you have it in the IEP–that his teachers will be conversant in ASL.

Early on, we gave Alice a home name sign – A, slightly to the side and wiggled.  You should consider that early on as well, but be sensitive to Deaf culture.  You are not giving your child a name sign – that’s a privilege that only comes from a deaf person.  A home name sign is a different beast entirely. Many are built from initials, but you might consider checking with an ASL instructor before settling on a name sign to avoid a faux pas.  For example, one of Alice’s teachers combined her first initial, s, with the sign for teach (her intent was “s-teach”), but instead named herself “stupid”.


  • Signing Time – this is an amazing video series that does a great job presenting ASL in a way that works so well for kids.  Both our kids loved it.
  • MSU ASL Browser – this is a dictionary of ASL signs.  Be careful, though – it’s not very good about giving context (ie, what’s the difference between present/gift and present/to show).
  • ASL Pro – a decent dictionary, but I’m told it has some British-isms in it.

You Have a Family Member with Down Syndrome, So Now What? Part 6

Copyright © 2012, Stephen Hawley, all rights reserved.

Communication will be one of your greatest challenges.  Trust me on this.  And when I say ‘your’ I don’t mean just you.  I mean you, your spouse, your other children, their cousins, your child’s teachers, and so on.  Communication issues will be a major problem for everyone with whom your child comes in contact.  Most of all, communications will be a big problem with your child.  You can help this in a lot of different ways.  Here’s one that you can start with at around a year or earlier and keep up until your child goes into preschool: Contextual Communications boards.



  • Paper, markers, etc.
  • Clear Contact Paper (or a laminating machine and inserts)
  • Tape or Adhesive Backed Hook-and-Loop fasteners



Think about the places and times when your child is fixed in a single place for a particular task.  For example, bath time, meal time, or playing with the lap desk you made earlier.  Make a short list of things that are appropriate for that context.  For example, for bath time you might have a list of body parts to be washed: hair, tummy, feet, hands, face, ears.  For meal time you might have milk, toast, cereal, yogurt, apples, banana, and so on.  Take or draw pictures of these things and label them in plain writing.  Cover them back and front with contact paper or laminate them (FYI, as of this writing, Staples will laminate things for you in their copy services department).  Crop them down with a decent border.  Note: for laminating, you’ll need to round the corners or you will have a sharp edge to contend with).  Attach one side of the hook-and-loop fasteners to the backs of each.  The side doesn’t matter as long as you’re consistent.  Attach the other side to the surface of the area where your child will be.

How to Use

Before the activity begins, attach a set of cards to the hook-and-loop fasteners.  At first, you will point to one (or assist your child in pointing to one) and provide that item.  For example, during bath time, you will teach your child to point to “hair” and then you take the card and say what is written on the card (remember to say thank you!) and wash your child’s hair.  You repeat until the task is done.  Eventually, your child will learn to pick these things on his/her own.  You can build as much structure as you’d like into the process.

What’s So Great About This

These tools are empowering for your child.  If she is delayed in speech (and she will likely be), she can communicate her wishes and make choices.  They promote literacy by having the words with the pictures.  Being able to make choices allegedly reduces the frequency of tantrums (although, in my experience the inability to communicate a choice is only the first step in a tantrum.  The inability to get what you want RIGHT NOW is the biggest cause).  Communications boards work great in a specific context with a limited vocabulary.  This is not a long term solution to building necessary breadth in communication.

There are no real hard and fast rules for this that I’m aware of.  When in doubt, it’s all about the communication, not the means: do what you feel works best.  Above all, have fun!