Speak to Me

Speech can be very difficult for those with Down syndrome.  Due to delays in memory and aural learning, as well as co-ordination issues due to lack of muscle tone and control, speech  develops very late compared to "typically developing" peers.  Most actual speech therapies start after the first year (about 18 months of age), which begs the question, what can be done in the mean time?

One of the areas that you can work on with your infant is developing the face and mouth.  These are the same exercises that one would use to strengthen the facial/mouth muscles and increase sensation in preparation for eating.  These techniques are courtesy of ICDSP:

Facial massage:  Using two fingers or your thumbs, stroke the baby's face from the upper cheek close to the ears down to the corners of the mouth.  Then, stroke down from under the nostrils to the top lip.  (Do this 3 or 4 times a day before eating)

Palatal massage:  Insert a clean finger into the baby's mouth and stroke the roof of the mouth (the palate) from the middle to the side, stopping at the gum line.  Return to middle and continue to other side; repeat 3-4 times prior to every feed

Gum massage:  Trace along the gums with firm pressure from the front to the back on each side, top and bottom.  Do this 2 to 3 times, twice a day.

Chewing/Toy Mouthing:  introduce and encourage the child to use a variety of teething rings, soft toys and feeding utensils;  introduce horizontally and to the side to encourage biting of the toy.  Do this 3 to 4 times, each side.

Along with these techniques is the single most effective tool to strengthen the oral muscles:  breastfeeding.  As it provides more resistance than bottle feeding, it encourages the development of the muscles of the lips, cheek and tongue and enhances the coordination of these with breathing.  Soother use is also encouraged for this reason.

Another area that can be worked on is sound recognition.  As children with Down syndrome are primarily visual learners, the goal is to help the infant link sound with facial expression.  When the child is alert and relaxed, find a comfortable position that places both of you at eye level.  Remove any background distractions such as a radio or the TV and make eye contact with your child as you make sounds.  As you make each sound, monitor your baby for any reaction.  Encourage repetition by repeating any sounds that he or she makes.  You can make non-speech sounds (which include clicks, pops, "raspberries", etc) or speech sounds (which are repeated consonants or vowels or combination).    Make exaggerated examples slowly and clearly to help the baby hear and react to the sound.¹

Talking, singing and playing with your baby face to face will also encourage the little one to pay attention to sound. Ensuring optimum hearing through frequent assessment will also help them acquire language. 

Although statistically, many children with Down syndrome do not learn to talk until much later than their typical peers, it is possible to help them prepare for this eventuality.  By encouraging strong facial muscles along with memory, speech and language skills, the child will be able to speak more clearly and have an increased vocabulary.  Which, is extremely important for those very first spoken words. 

I won't say "Mama" for a while yet, but it will be phenomenal when I do.

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1.  Courtesy of R. Grey, Speech-Language Pathologist at Trillium Health Centre:

Group Hug

Last Wednesday was our final meeting for our DS group put on by ICDSP.  We only had 6 weeks together, but it gave us the opportunity to meet other parents of babies with Down syndrome and learn a lot more about what we can do to help our children along. I was only able to go half the time, which is an unfortunate side effect of my wonky schedule.

As it was our last day together, we cleaned up some odds and ends and the babies were evaluated. I also brought the camera and quickly whipped off a few shots.  I would have liked to get more, but it was near the end and my two were getting fussy, so I only have a few (we were also missing a member as well).

I can stand!  Yay!

First of all, Zoe has a new trick.  Actually she has two, but I haven't gotten a shot of her sitting yet.  She can pull herself to a stand using whatever is handy (my pant leg, the table, my hair...  in this case it was Daddy's hand).  She is very happy with it (and we are scared).

Wyatt is evaluated

There were 6 babies in the group, ranging from Wyatt at 7 months (and Emma who shares a birthday with my twins) to Nyal who was only six weeks old when we started.  It was cool to see other Moms at the start of their journey and listen to similar stories, such as time in the NICU, feeding difficulties... stories involving an NG tube.  Although we shouldn't compare our children, there was a lot of that as well.  Who had what symptom?  How had the extra chromosome manifested in the other children?  There was a lot to learn from one another and shared experience is truly important.


Our group leaders hosted and evaluated every week.  Through them, we learned to put our positioning exercises into practice and recieved a multitde of helpful tips on how to improve the lives of our children. (some of which have been shared here over the course of this month).  There were special guests, such as an OT and a speech therapist who laid the foundation for work later on.

 

Wyatt exercises

Wyatt and Emma

Wyatt much prefers to be without pants it seems; at least that is what he seems to be demonstrating by only playing with his feet when he is without them.  Linda showed us that with a simple towel roll we could encourage Wyatt to continue to grab his feet and develop his leg, arm and abdominal muscles as well as improve his body awareness and sensory input.  That's a lot of responsibility for two little feet.

Gotcha, Emma!

Hopefully we will see everybody again, if only to check in once and a while.  As was to be expected with a random sampling of children with Down syndrome, we all face very different challenges.  One child has already had several club foot surgeries, one had severe choking issues while eating, one had digestive issues that rivaled the little girl in the exorcist...  etc.  The early days after a diagnosis of Down syndrome can be challenging.  There is a lot of adjusting that everyone has to do that is unique to each family.  It was wonderful to see each parent become more skilled with their child (including us) as the six weeks progressed. I'm going to miss our time together.  Hopefully we can make good on the exchanged lists of information. 

Many local organizations offer groups such as this one for new parents.  I would highly recommend this to any new parent of a child with Down syndrome.  Just as Mother Goose helped me in the early days to become closer with all my babies, this group helped both of us to become even closer with Wyatt as we addressed his specific needs.  We have seen distinct improvements after employing some of the techniques we learned there.  Armed with these new tools, both of us feel encouraged.  For that alone, I cannot thank the group enough.

Down Syndrome and the Developing Child

One of the most common questions I get asked is "how is Wyatt developing?"  When I don't have an easy, static, predictable answer (such as "he's working at a ____ month level", for example), I get a lot of confused looks.  With that in mind, this Teaching Tuesday is dedicated to development in the child with Down Syndrome, from birth to 5 years of age.

Each child with Down Syndrome is different.  Although all with Trisomy 21 share a third copy of the 21st gene (for example), how that gene expresses itself varies from child to child and is unique to him or her.  This also applies for both Translocated and Mosaic Down Syndrome.  As the physical aspects vary, so do the developmental delays that each child faces.

It is also important to understand how children develop.  Most children acquire and hone new skills and achieve 'milestones' that are not a result of direct teaching (with a few exceptions, such as counting, reading and toilet training).  Instead, children learn in the family setting, by being encouraged and modeling behaviour in a social environment.  Parents shape appropriate behaviour, language and actions by being sensitive and responsive to needs and rewarding where this has been achieved.  A wide range of learning and social opportunities are explored in the context of the family, as well as through books, toys, outings and social interactions. (Buckley, Sacks, 2001) By comparison, children with learning disabilities may have to be actively taught certain skills due to their individual deficits.

Children with Down Syndrome do have a set of general strengths and weaknesses;  these will impact on the child's ability to learn and grow.  The following developmental profile for Down Syndrome is courtesy of "An Overview of development of infants with Down Syndrome (0-5 years)" (Buckley, Sacks, 2001)

Social Understanding and Interactive Skills

• Relatively strong and less delayed (compared to speech and language)
• Can make eye contact, smile, coo and babble from early months
• Socially sensitive and understand non-verbal cues (facial expression, tone of voice, body postures) in first year

Motor Skills

• Most (such as reaching, sitting and walking) delayed
• Main milestones are steadily achieved
• Most children become mobile and independent in self-help skills (ie: feeding, dressing)

Speech and Language Skills

• More delayed than non-verbal understanding and reasoning
• Most understand more language than they are able to express (due to speech production difficulties)
• Signing helps majority of children to communicate (and reduces frustration)
• Hearing problems are common and contribute to difficulties in this area
• Speech is most serious delay as it impacts all areas of mental and cognitive development

Working Memory Development

• Impairments with verbal short-term memory
• Impacts on child's ability to process information

Visual Memory and Visual processing

• Relative strengths
• Auditory processing and memory more impaired
• Visual learners;  use visual aids for all teaching

Reading Ability

• Often a strength (as early as age 2)
• Builds on visual memory skills
• Reading activities can be used to teach spoken language 

Numbers

• More difficult
• Delayed when compared to reading

Social Behaviour

• A strength
• Less likely to develop difficult behaviours than other children with cognitive delays
• More likely to develop difficult behaviours than typical children of their age

Not surprisingly, there are different developmental guidelines that have been established for children with Down Syndrome.   Among those are Milestones for Children with Down Syndrome (Buckley, Sacks, 2001) and a series of growth charts that are Down Syndrome specific (Courtesy of the American Academy of Pediatrics).  Utilization of both are important as it allows for a child with Down Syndrome to be assessed more fairly;  not in comparison to his or her typical peers, but to peers with Down Syndrome and most importantly, to the child themselves.

Atlantoaxial Instability

For today's Medical Monday, I am featuring a condition that affects up to 30% of people with Down syndrome. It is called Atlantoaxial Instability (or AAI for short) and can cause serious problems if it is undetected.

The Vertebral
Column

The spine is made up of large bones called vertebrae which surround the spinal cord.  These are divided into groups or sections for the purpose of descriptive location:  there are 7 cervical (red), 12 thoracic (blue), 5 lumbar (yellow) and the pelvic (green).  The first vertebrae (C1) is referred to as "atlas" and the second (or C2) is referred to as the "axis". Muscles and strong ligaments allow movement, including flexion (forward tilt of the head) and extension (backward tilt of the head).

Most people with Down Syndrome have hypotonia or low muscle tone and often have hypermobile joints (due to lax ligaments).  When this occurs, C1 and C2 can become misaligned;  this is referred to as Atlantoaxial Instability.

Many people (10-20% of people with DS) have what is known as 'asymptomatic' AAI (as in not causing them any symptoms).  This is found on an x-ray which should be routinely performed around the age of 3.  However, 1-5% have 'symptomatic' AAI, which causes a variety of problems.

When the atlas and the axis are misaligned (also known as subluxation), the spinal cord inside can become compressed which can cause serious symptoms and even death.  Among those symptoms are:

Plate from Grey's Anatomy, showing the occipital portion
of the skull, the Atlas (C1) and Axis (C2).

• Lack of Coordination 
• Clumsiness 
• Difficulty walking
• Walking abnormally
• Tiring easily
• Limited neck movement and/or nerve pain
• Tightness in the muscles
• Muscle contractions or spasms

If any of these symptoms are experienced by a person with Down syndrome, they would require a full work up by a Neurologist, which might include X-rays, MRI and CT scans.  Surgical stabilization of the joint may be necessary, however depending on the severity of the AAI, other treatments such as traction, collars and muscle relaxants may be prescribed. 

Those with asymptomatic AAI would require no treatment, however sports would be limited to no-contact and low impact and a brace might have to be worn for protection.

Those without either condition are still recommended to have a neck (or 'cervical') x-ray series done and wear neck protection if playing contact sports.