I’ve never been one for resolutions for the New Year, mainly because I don’t want to suffer the guilt the following week when I bail out for some very good reason.  But I do think that it is inevitable that we think about our lives and the aspects that we would like to change.  Invariably, many families of a young child with Down syndrome vow to stay on top of the “therapies” and different intervention endeavours. 

This can be difficult, particularly when there is a list of “skill deficits”  and intervention targets.  Take any typically-developing person, any age, and a therapist could outline a host of areas requiring work.  As I review my own resolution to walk more, I shiver at the thought of what a physical therapist would say to me upon examination.  A child with a known developmental disability is going to have similar lists, and more of them.  With this in mind I wanted to share some advice I have given to many parents for keeping yourself organised and the guilt at bay:

• When with therapists, make sure that you have a clear idea of the main objective for work at home.  If you are given a number of things, clarify what is the number one priority.  You can not move a mountain in a day (but you can move it!)  so you need to identify the focus for the week. 

• Before you leave the company of the therapist, brainstorm how, when and where you can perform the target intervention.  It really is worth taking some of the therapy time to do this.  The best outcomes occur when intervention is done as part of the normal day and routine and not as “therapy time.”  Thus, think about when, where, and how you can practice the identified skill during a “normal” day.  For example, if your physical therapist wants your child to practice squatting down and then reaching up high, brainstorm together when your child could do this.  I believe that most areas can be targeted in some way during dinner.  Maybe you could put safe silverware on a tray on the floor next to the table and give your child the chore of setting the table.  She will have to squat down and get the silverware and then reach up to place the item on the table.  OK, you won’t have a well- set table, but your child will get good practice.  Write down the agreed target so that you don’t forget.

• Choose language targets for the week.  The language skills always need expanding but you need to limit what you target or you will never escape guilt.  A therapist can help you identify current goals and, again, you should brainstorm how you can embed the language goals into normal routines or play.  Choose one or two skills to work on and stick to only those for targeting.  Of course, you will be exposing your child to new words and concepts, but that is incidental to your chosen targets.   Your focus is the one or two concepts chosen.  Any more and it is likely to be an unreasonable amount of work that will weigh you down with guilt when you can’t keep up.  Less is more. 

• For very young children who are at the one-word level and are building up the vocabulary, chose no more than 3 signs that you wish to teach and write them down for all to see.  I suggest posting the words (and sign pictures if you have them) on the fridge.  That reminds everyone in the family (and regular visitors) what you are working on.  It is not the responsibility of one person to teach these signs and siblings are great teachers (often, the best.)  The more people who sign, the quicker your child will make sense that sign is a way of communicating and will help generalise the skill. 

I also suggest that you make sure that you have dates with your partner where you agree to not mention Down syndrome, therapies, or doctors.  Therapies are important, but they should not consume your life.

© Ann Haig Wheeler, DSC 2010.

DSC invites you to make a contribution of €50 per annum to help support us in maintaining the high standard of content and information you have found on our site today and every other day. If you can support us in this way, we would be delighted to take this contribution online at http://downsyndromecentre.bigcartel.com 

All rights reserved. No part of this work can be reproduced in any form, or by any means without the express permission of the author or by Down Syndrome Centre info@downsyndromecentre.ie

Got a question for Ann Wheeler? If so, drop her an email here.