The Early Years: Dealing with Down Syndrome – try the ‘Welcome to Holland’ strategy

Our little baby boy (we will call him Kismat), lay on his stomach, very still. By this time, he should have been turning independently from side to side, holding his head steady and smiling at his mum. So, I explained that Kismat had low muscle tone.

By Abha Ranjan Khanna

Last year, a three-month-old baby boy with Down Syndrome was referred to me for early intervention. His mother and grandmother (paternal) brought him in to see me. Both looked shell-shocked and frazzled. They had many questions, misconceptions, fears and information overload/fatigue from hours of googling.

They reminded me of the well-known essay “Welcome to Holland”. Written by Emily Perl Kingsley, parent of a child with Down Syndrome, it’s about the experience of having life’s expectations turned upside down. It’s about months of planning for an exhilarating trip to Italy and the plane lands in Holland! It’s about learning to look at Holland instead of Italy; it may not be as exciting as all your friends who vacation in Italy make Italy out to be, but Holland has windmills, Tulips,Rembrandt – a very special and unique beauty all of its own.

I noticed immediately that they were very protective and handled him gingerly and were scared to even change the position of his head from left to right or move him at all. Our little baby boy (we will call him Kismat), lay on his stomach, very still. By this time, he should have been turning independently from side to side, holding his head steady and smiling at his mum. So, I explained that Kismat had low muscle tone. That his muscles were slightly weaker than in typically developing kids and that the mum would have to handle him differently. She would have to carry him with his face forward rather than resting backward over her shoulder.

Carrying Kismat with face forward helped him steady his neck and helped the mother talk to him about everything he could see, because this way she would know exactly what he could see!

My next few sessions were to take her through understanding developmental milestones and the importance of these skills.

The course of children’s development is mapped using a chart of developmental milestones.

The Early Years: A Down Syndrome baby has the same needs as any other

These milestones are behaviours that emerge over time, forming the building blocks for growth and continued learning. Some of the categories within which these behaviours are seen include:

1. Cognition (thinking, reasoning, problem-solving, understanding)

2. Language (expressive and receptive abilities)

3. Motor co-ordination (gross/fine motor, jumping, hopping, throwing/catching, drawing, stacking)

4. Social interaction (initiating peer contact, group Play)

5. Adaptive skills (self-help skills)

Adaptive skills incorporate the area of self-help skills such as eating, drinking and dressing. Typically, a child:

By one:

1. Feeds self a cookie or cracker.

2. Holds a cup with two hands; drinks with assistance.

3. Holds out arms and legs while being dressed.

Between ages one and two:

1. Uses a spoon, spilling a little.

2. Drinks from a cup with one hand, unassisted.

3. Chews food.

4. Unzips large zipper.

5. Indicates toilet needs.

6. Removes shoes, socks, pants, sweater.

Between ages two and three:

1. Uses a spoon, little spilling.

2. Gets drink from a fountain or faucet independently.

3. Opens door by turning the handle.

4. Takes off coat.

5. Puts on coat with assistance.

6. Washes and dries hands with assistance.

As the mother and I worked together, meeting once every week for an hour’s session, I noticed that she had truly started enjoying Holland! She had also taken off and discarded the prism of “Down Syndrome” that she had been seeing Kismat through.

Today Kismat is 16 months old. He is very sharp and talks nineteen to a dozen; is pulling up to stand holding onto furniture; is initiating taking a few steps with support; has a great sense of humour; plays endlessly with his older sister and best of all, the mum has high expectations of him and can’t wait for him to join a play school.

(The writer is an occupational therapist.)

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