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Information

Down syndrome is a common condition caused by having “extra” copies of genes on the 21st chromosome. Those extra genes change development during pregnancy, and they continue to have effects after birth and throughout a person’s life. Each person with Down syndrome is unique, having some of the many possible health, learning, and related differences that can occur with this condition. Some of the differences in people with Down syndrome are common and visible, like the facial appearance.

Other changes are less common or less visible but can still cause problems or may need special treatments. The “special treatments” may include medicines, surgeries, or changes in what you should expect.

There are no medicines or therapies that are needed by all people with Down syndrome.

There are also no medicines or therapies that can “cure” Down syndrome.

Your child’s doctor should be your starting point.

Your child needs regular doctor visits and a few special tests.

Medical specialists may also need to be involved.

The medical issues for a child with Down syndrome change with age. For this reason, this document is divided into several age groups. Each age group includes a list of issues that may be important to your child at that age.

The information within each age group is sorted by the parts of the body that are affected (heart, ears, etc).

Many tests only need to be done once. Some areas might need to be looked at again, or even many times, as the child grows to an adult.

This document focuses on medical topics that affect physical health.

Other issues can affect social and school success, which may not need doctors or other medical resources but are still important issues for children with Down syndrome.

Many people with Down syndrome understand more than they can say. They may need help to communicate in other ways.

Most have good social skills, especially if they have friends with typical behavior as models. Respect for and attention to their abilities are often important missing pieces and may be enough to make a big difference in performance and behavior.

There are a number of significant health and medical issues that are more common in people with Down syndrome. In the past, the medical conditions associated with Down syndrome were responsible for a reduced life span. Today, advances in surgical and medical treatments mean that many people with Down syndrome will not have any more ongoing health issues than anyone else.

Babies with Down syndrome are more likely to have heart defects, gastrointestinal tract problems and lax (loose) joints, especially the hip joint. Many people with Down syndrome have lower immunity than the general population. This means that, especially in early and older years, extra care may be needed to ensure that common medical ailments like colds and other infections are promptly attended to so they do not develop into more serious health issues. Antibiotics can prevent the risk of serious side effects, such as pneumonia or gastroenteritis.

A large percentage of babies with Down syndrome are born with a congenital heart defect. This is a problem with the structure of the heart. The most common congenital heart defect for people with Down syndrome is an atrioventricular septal defect (often referred to as a ‘hole in the heart’, although there may be more than one hole).

Babies are checked for heart problems at birth, and then examined again at six weeks of age. The seriousness of a heart defect usually depends on how much it affects the way blood flows around the body. In some cases, heart defects will cause no problems and eventually heal themselves. However, more commonly, heart surgery is required.

If your baby is born with a heart problem:

  1. Mild forms will cause little trouble and will be self-correcting.
  2. More complex heart problems will be operated on in the first few months of your baby’s birth.
  3. Only the more severe cases are inoperable and will shorten your baby’s life.

Some babies with Down syndrome are born with conditions that affect the stomach and gastrointestinal system. Some of these conditions are evident at birth, and may require surgery straight away. Others are picked up due to feeding difficulties. A relatively high proportion of babies with Down syndrome have reflux in the early days. Constipation is also common in people with Down syndrome. This can be made worse by low muscle tone in the stomach muscles.

An over-active or under-active thyroid gland is caused by hormone imbalances or deficiencies. If left untreated, it can affect physical and mental wellbeing. The most common condition for people with Down syndrome is an under-active thyroid, which is known as hypothyroidism. The symptoms of this condition include:

  1. Lethargy
  2. Lack of concentration
  3. Weight gain
  4. Dry coarse skin
  5. Memory impairment
  6. Intolerance of cold
Newborn babies with Down syndrome are tested for thyroid conditions. Ongoing screening should be done at least every two years throughout life as the onset is gradual. Treatment is a thyroid supplement in tablet form.

Children with Down syndrome tend to have relatively narrow nasal passages. As a result, some children may be more prone to coughs and colds than other children, especially in early childhood and at times when there is an increase in mixing with other children, such as starting playgroup, pre-school or primary school. Older people are also more susceptible to chronic respiratory conditions.

Sometimes, upper airway obstruction can lead to disrupted sleep patterns and resulting fatigue, stress and behaviour issues. Sleep apnoea can be identified by surveying sleep patterns.

Children with Down syndrome tend to have narrower Eustachian tubes than the general population. Eustachian tubes are the part of the ear that drain fluid from the middle ear.

Narrow Eustachian tubes may mean that the fluid cannot be drained easily, which can lead to blockages that cause ear infections and hearing loss. Blocked Eustachian tubes can also develop into a condition called ‘glue ear’. Glue ear often clears up spontaneously as a child grows and the tubes enlarge naturally. However, the problem may be recurrent throughout childhood. If it becomes a persistent problem, it can be treated by surgery to insert tiny plastic tubes, called ‘grommets’, into the ear that allow the fluid to drain.

For people with Down syndrome, hearing loss has been a significant health issue in the past. This was due partly to untreated ear issues in early life. It is less of an issue today with more consistent monitoring. Hearing should be monitored at least every two years throughout life. People with Down syndrome experience some degree of hearing loss with ageing, as do the general population

Visual defects are common but correctable and people with Down syndrome should have their vision checked regularly throughout life. Both long and short-sightedness are more common than in the general population. A decline in sight with ageing occurs at the same rate as in the general population.
Other conditions that occur more commonly include:

  1. Squints
  2. Nystagmus – involuntary movements of the eye that blurs vision
  3. Cataracts – a clouding of the lens inside the eye
  4. Keratoconus – vision becomes impaired because the cornea changes shape.

The milk teeth of children with Down syndrome appear later than in other children, and they tend to keep them for longer, which results in increased wear and tear. Adult teeth may be irregularly spaced. Gum disease is more common in people with Down syndrome and regular dental check-ups are advisable. Ongoing and specific instruction may be necessary to maintain good oral hygiene.

The majority of people with Down syndrome have dry skin and hair, and routine monitoring for associated irritation, inflammation and infection is advisable. There is also increased likelihood of a number of common skin and hair disorders, such as atopic dermatitis, fungal and yeast infections, impetigo, eczema and alopecia.

People with Down syndrome grow more slowly than others. They are usually short in stature and may be prone to weight gain, partly as a result of metabolic differences. A physically active lifestyle is recommended for general health and to combat this tendency.

In a small minority of children, there is increased mobility of the atlanto-axial joint. This is the joint that connects the two neck bones directly under the skull (known as the atlas and axis). This condition is known as atlanto-axial instability. In rare cases, this can lead to dislocation of the two bones, which can cause compression of the spinal cord. This usually occurs gradually, but can also occur suddenly. Signs of spinal cord compression include:

  1. Neck pain
  2. Restricted neck movement
  3. Unsteadiness in walking
  4. Deterioration in bowel and bladder control.

Your baby may have reduced muscle tone . Muscles can be strengthened through:

  1. Exercising and stimulating your baby
  2. Handling and tickling your baby
  3. Helping your baby into a sitting position.

A physiotherapist can provide help and assistance. Exercise will also help to stimulate your baby’s circulation and will reduce the risk of chest infections. Low muscle tone can lead to problems with the structure of the foot, poor gait and mobility issues. These can be corrected by the use of good supporting footwear and orthotics. Muscle tone usually improves as the child grows older.

  1. Many children with Down syndrome have a normal life span.
  2. A large percentage of babies with Down syndrome are born with a congenital heart defect.
  3. Some babies with Down syndrome are born with conditions that affect the stomach and gastrointestinal system.
  4. Have your child’s hearing, eyesight, thyroid function, teeth and gums checked regularly.

Q: Is fluoride safe to give to children with Down Syndrome?
A: There is no evidence that fluoride, used correctly, is harmful to children with DS than any other child. Fluoride in the proper amounts is not toxic.

Q: Are atropine eye drops dangerous for children with DS?
A: No. Atropine eye drops are used to dilate the pupil during eye exams, and also to treat the conditions amblyopia, esotropia and strabismus. Children with DS seem to have a greater dilation in response to atropine, and the dilation appears to last longer as well. However, there is no evidence that atropine eye drops has any effect on the body beyond the eyes. (North RV, Ophthal Physiol Opt, 7(2): 109-114, 1987)

Q: Is iron dangerous for children with DS?
A: The claim that iron is dangerous is often based on two suppositions, the first being that since iron is present in plaques in the brain of people with Alzheimer's disease, iron must be part of the process of the creation of the plaques. However, it has been shown that plaques in the brains of people with Alzheimer's disease are very sticky, and contain many things that may not have been involved in the initial formation of the plaques. Researchers have still not come to an agreement on exactly what causes the plaques, and how the plaques actually fit into the clinical picture of dementia.

The second supposition as to why iron might be harmful is based on the fact that people with DS have an excess amount of superoxide dismutase (SOD) in their cells, due to the extra 21st chromosome …The excess SOD is supposed to make more hydrogen peroxide available, which may react with iron to cause more damaging free radicals. At the present time, the research on this topic is still questionable and certainly ongoing. There is no definitive evidence that this happens, so it's too early to say that all iron is dangerous. I would certainly not recommend a low-iron formula for any infant with DS due to the high risk of iron deficiency anemia in this age group. After the second year of life, my personal recommendation would be that there's no reason to avoid iron-fortified foods, but there's no reason for extra iron supplementation in vitamins unless there is a documented anemia from iron deficiency. If you want to give your child a chewable vitamin and all your choices have some iron in them, pick the one with the lowest amount.
(Caveat: women with DS who are menstruating do need iron supplementation to avoid becoming anemic .)

First and foremost, I recommend that you see a dentist to rule out any underlying medical issues that may be the cause of tooth grinding, such as an abnormal bite, misaligned teeth, etc. A dentist may also recommend a bite guard, especially if the problem only persists at night.



HABIT…

Could he be grinding his teeth out of habit? If so, work on replacing the habit with a safer alternative. For example, every time your child grinds his teeth, provide him with an oral fidget to chew on. Be patient and consistent. It’s also worth noting that a recent study on bruxism (the technical term for clenching or grinding the teeth) found success with verbally telling a young girl to stop grinding her teeth. Sounds simple, but habits are often done unconsciously/automatically. So a verbal reminder may help make them more aware of what they’re doing, and they can in turn curb it.



STIMMING

Tooth grinding may be a form of stimming. Short for self-stimulation, stimming is a way that individuals with autism and/or sensory processing disorder (SPD) calm and organize themselves, especially in times of stress or extreme emotions. If this is the case with your child, an occupational therapist can assess his needs and put him on what’s called a “sensory diet” of activities that will allow him to safely self-regulate throughout the day.



ORAL HYPOSENSITIVITY

If your child is hyposensitive, he may be grinding his teeth because he needs more oral input. Hyposensitive individuals have little to no awareness in their mouths, which means that they have a high threshold for oral input. As a result, they may seek out orally stimulating activities that provide lots of proprioceptive feedback, such as mouth stuffing, excessive chewing on shirts, hands, pencils, etc., and/or tooth grinding. A speech therapist and/or occupational therapist trained in SPD will be able to assess your child and implement intervention strategies based on his needs. Many of these strategies involve providing oral input in more appropriate ways, such as the following:

  1. Gum massage – this is a great activity to begin with. It’s an easy and effective way to provide input to all areas of the mouth.
  2. Diet-Incorporate more hard-to-chew foods into his diet, such as apples, celery, and carrots.
    Tooth grinding could also be a symptom of global hyposensitivity, not just oral hyposensitivity. For instance, when children have low muscle tone or awareness throughout the body, they sometimes have difficulty turning on just one muscle group. They could engage their jaw muscles while they are trying to stabilize their trunk to sit upright, and therefore grind their teeth. If this is the case, a physical therapist and occupational therapist will be able to work on the ability to disassociate muscle groups

Babies with Down syndrome oftentimes have low muscle tone (hypotonia) and sometimes have trouble forming a latch to breastfeed. However, with the help of lactation specialists, many mothers are able to provide all of the known benefits of breastfeeding to their baby with Down syndrome. More information is available from La Leche League International.

Reflux—medically known as gastroesophageal reflux disorder (GERD)—is a condition that results when acidic stomach contents travel backwards up the esophagus, the body’s swallowing tube. Many babies with and without Down syndrome have GERD; for some babies, however, the severity of symptoms warrant special attention.

Based on the current studies available, 1-5% of people with Down syndrome have GERD and experience symptoms such as heartburn or intolerance with certain foods. In babies, reflux is typically expressed as intense back arching and crying during feeds. GERD typically results when the muscular ring at the end of the esophagus becomes relaxed, allowing the stomach contents to track backwards. Medication therapies result in significant improvements for most individuals. In certain cases, a consultation with a GI specialist might be helpful as additional testing can be done.

People with Down syndrome can be constipated for all of the same reasons that people without Down syndrome become constipated—poor diet and lack of exercise, among many reasons. However, people with Down syndrome are also prone to three conditions that can result in constipation:

  1. Hypothyroidism
  2. Hirschsprung disease
  3. Celiac Disease

    Hypothyroidism results when the body’s thyroid gland does not produce enough thyroid hormone, which regulates many activities in the body, including stooling. This can be diagnosed with a simple blood test and treated with synthetic thyroid hormone. Hirschsprung disease is described above and most often diagnosed within the first year of life. Celiac disease is a condition where the body cannot properly digest certain foods and is described below.
    If none of the above three conditions explain the constipation, caregivers and physicians should work together to explore safe laxative medications. In certain occasions where the cause of constipation might be due to behavioral concerns, working with a developmental-behavioral specialist could also be helpful.

Obstructive sleep apnea, is when people stop breathing or experience blocked or shallow breathing during sleep, generally due to an obstruction of the airway. Obstructive Sleep Apnea in children with Down syndrome may be caused by a small upper airway, enlarged adenoids and tonsils, collapsing throat muscles, large tongues and other health issues. Children with Down syndrome also tend to have poor muscle tone in the upper airway that can sometimes cause their tongue to relax, blocking their airway at night.

Often, a child with Down syndrome who also has a sleep disorder may go untreated because it may be difficult to distinguish the symptoms. Children who have Obstructive Sleep Apnea may exhibit failure to thrive (weight loss or poor weight gain), mouth breathing, enlarged tonsils and adenoids, problems sleeping and restless sleep. They may also exhibit excessive daytime sleepiness, daytime cognitive and behavior problems, including problems paying attention, and aggressive behavior and hyperactivity.

Behavioural sleep problems are the most common in children, including those children with Down’s Syndrome. The behaviours may have resulted from repeated waking due to sleep apnoea, or could be because the child does not understand what is expected of them at night time. There are many other reasons why your child may not be sleeping, but there is no reason why they cannot be helped to sleep better.

It’s important to diagnose and treat sleep disorders in children to eliminate and/or manager other health issues. Efficient sleep has been proven to be a major factor in the healthy growth of all children.

The true diagnosis for a sleep disorder must be conducted in a sleep laboratory under the care of a sleep technologist during a procedure called a sleep study. During a sleep study, a trained sleep technologist applies leads and electrodes to the body that will allow for monitoring of oxygen levels, heart rate, sleep staging and limb movements during the night. The treatment of a sleep disorder will vary depending on the diagnosis of the study. Some treatments may include throat surgery in which the tonsils or adenoids are removed. These soft tissues in the throat may be obstructing the airway during the night and will need to be removed by an ear nose and throat specialist. It is important to note, however, that this is not always the most effective form of treatment and children with Down syndrome may be at higher risk for post-surgical complications.

Another common and therapeutic form of treatment is with the use of CPAP also known as continuous positive airway pressure. CPAP is the application of a mask during the night that provides an air pressure to the airway to eliminate the obstruction that causes frequent awakenings during the night. Although very effective, CPAP may be more challenging for children with Down syndrome because of their struggles to comply with the therapy. It can be difficult for an adult with sleep apnea to get used to using a CPAP machine.

The endocrine system is made up of the glands that produce and secrete hormones. These include the thyroid, the pituitary gland, the adrenal glands, the pancreas and many others. The most common endocrine problem in children with Down syndrome involves the thyroid. The thyroid, located in the throat, is the largest endocrine gland in the body. The thyroid secretes a wide array of hormones that regulate metabolism, heart rate, and growth.

Hypothyroidism means that the thyroid is not producing sufficient amounts of hormones. Hypothyroidism can be a serious problem if left untreated so it is important that children with Down syndrome be tested at birth and then on a yearly basis to insure that the thyroid is working correctly. Untreated, hypothyroidism can lead to slow growth, skin disorders, blood disorders, sleep disorders, learning disorders, and feeding disorders. Fortunately, hypothyroidism can be easily treated with an oral medication, L-thyroxine. This is an inexpensive medication which serves to replace the missing hormones.

Hyperthyroidism is a condition where the thyroid produces too much thyroid hormone. One form of this condition is Graves disease. Symptoms include nervousness, irritability, increased appetite, increased perspiration, disturbed sleep and an enlarged thyroid. This condition is treated with medication to block the production of thyroid hormone. In some cases the thyroid may be removed or destroyed with radioactive iodine. In this case, L-thyroxine would be used to replace the thyroid hormones.

Children with Down syndrome may have a shortage of growth hormone (hGH) which is produced in the pituitary gland. hGH replacement is fairly controversial, but a child with reduced levels of hGH may be a candidate for hGH replacement therapy. It is quite common for children with genetic disorders such as Down syndrome to be short in stature and special growth charts have been developed for children with Down syndrome. However, some doctors have come to believe that children with Down syndrome should be charted on the normal growth charts. If a child fails to grow on these charts, it may be a sign that there is an endocrine problem such as hypothyroidism.

Infants with Down syndrome tend to have very soft skin but as they grow older their skin can become dry and coarse. A common problem for children with Down syndrome is atopic dermatitis (also called atopic eczema). This is a condition where the child has a dry, red, and scaly rash usually on the cheeks, arms, legs, or trunk. This condition is actually found in up to 10% of all children but is more common in children with Down syndrome. No permanent cure exists but the condition can be controlled. The skin should be treated with moisturizers and mild soaps or soap-free cleansers (such as Cetaphil) should be used to clean the skin. More severe cases should be treated by a dermatologist who can prescribe topical corticosteroids. Some parents have reported successfully treating atopic dermatitis by eliminating dairy and gluten (found in wheat) products from the diet. Our son had a severe case of atopic dermatitis on his cheeks and chin. We replaced cow milk with soy milk and switched him to rice cereals and saw a dramatic improvement in his skin in a very short time.

Although rare, it does tend to occur more often in people with Down syndrome. It is believed that AA is an autoimmune reaction where the body attacks its own hair follicles. A person with AA usually develops bald patches although generalized thinning or complete baldness may also occur. In most cases, children with AA may have a few small patches that disappear without treatment within one year. AA can be treated with topical steroids or topical irritants but in young children these treatments are usually not practical.

The most common functional disorders are:

  1. esophageal motility disorders and gastro-esophogeal reflux. Children with Down syndrome often have problems with reflux. Reflux does not mean that the child spits up during or after a feeding. In most cases, this simply means the child has swallowed air. Reflux can occur because the esophagus is having trouble propelling food into the stomach or it may occur because the stomach is emptying too slowly. Persistent reflux may cause serious problems since the stomach contents are highly acidic and can damage the esophagus, larynx, or trachea. If the child aspirates stomach acids, they may gag or cough just after feeding. Reflux is normally treated with medicines to reduce stomach acidity and to help move food through the stomach faster. In many cases, the child may grow out of the problem.
  2. malabsorption disorders - Children with Down syndrome sometimes have a condition called celiac disease in which the intestines lose the ability to absorb nutrients. This condition is normally treated by eliminating gluten from the diet. There are other malabsorption disorders but children with Down syndrome are no more likely to have these conditions then the rest of the population. Some children with Down syndrome may have trouble absorbing certain vitamins. If the child is not growing well or has an increased number of ordinary infections that are difficult to cure, they may have a vitamin absorption problem. A blood test can help to determine if this is a problem.

People with Down syndrome tend to have a significantly higher incidence of hearing problems than other groups.
The importance of hearing cannot be overemphasised and surveys suggest that as many as 80% of people with Down syndrome will have some problem with hearing. The vast majority of children acquire language primarily by hearing what is being said by those around them, and good hearing is involved in the development of speech and language as well as socialisation. These, as well as other factors, have a profound effect upon the general intellectual development of the child. The early detection and treatment of hearing deficits is, therefore, essential for the child with Down syndrome.

How does a normal ear work…….

Sounds, which are pressure waves in the air, travel along the external auditory canal where they meet the eardrum. This is the gateway to the middle ear, an air-containing cavity containing a chain of three small bones (ossicles) which connect the eardrum to the oval window. The sound waves cause the eardrum to vibrate, which in turn produces movements in the ossicles. This produces vibrations on the oval window (a small membrane separating the middle ear from the inner ear). These pass through the fluid in the inner ear and then stimulate the hair cells of the cochlea differentially, depending upon their frequencies and pressures. At this stage, the information contained in these pressure changes is transformed (transduced) into nerve impulses, which travel along the acoustic nerve via complex routes to the brainstem and brain, where sound is perceived. Anything which interferes with any stage of this transfer chain will affect hearing. On average, the air pressure in the middle ear is the same as the surrounding atmospheric pressure and this is regulated by the Eustachian tube which communicates between the middle ear and the upper part of the throat.

Hearing loss
  1. Conductive loss: This is common, and is caused by interference with the function of the middle ear by infection (Otitis Media) and/or glue ear. However, excessive wax or other foreign bodies can also cause obstruction of the outer ear canal.
  2. Sensori-neural loss: This occurs when the cochlea or the acoustic nerve is damaged. There is evidence to suggest that this type of loss increases in later childhood and this is a good reason to continue with routine assessments even if a child does not show signs of conductive loss.

Some children have a mixture of sensori-neural and conductive loss.

Wax in the external ear canal may interfere with hearing and can be softened with eardrops or removed by syringing or use of an appropriate instrument. The latter procedures must be performed by an experienced professional.

Glue Ear is one of the commonest conditions involving the ear and has a particularly high incidence in children with Down syndrome. A mucoid secretion accumulates in the middle ear and stops the ossicles from vibrating freely, therefore reducing hearing levels. Children with Down syndrome tend to have stickier 'glue', which is less likely to drain away, and more likely to become infected. The Eustachian tubes are often less effective in allowing drainage from the middle ear, as they tend to be narrower in children with Down syndrome.

'Glue ear', and the associated hearing loss it causes, tends to fluctuate across time and certainly children seem to be less affected in the warm summer months. Glue ear can be treated in three ways: insertion of grommets, microsuction and tonsillectomy and /or adenoidectomy.

The insertion of grommets in the eardrum allows the fluid to drain out of the middle ear into the external auditory canal. Grommets are tiny tubes with flanges at each end, which are inserted through the eardrum, allowing the glue to drain out. This is very effective as long as the grommets remain in position in the eardrum. They do become extruded (pushed out) after about three to twelve months but they are almost always helpful in allowing drainage and therefore improving hearing. We shall return to the use of grommets in our evaluation of the benefits of screening and intervention. Drainage from the middle ear can also be achieved by perforating the eardrum with laser apparatus. These perforations tend to heal fairly quickly but many clinicians feel that this is a very worthwhile procedure for draining the middle ear.

Microsuction involves sucking the fluid out of the middle ear using a thin needle which is inserted through the eardrum. This usually has to be repeated several times but can be very effective. It has the advantage the there is no discharge into the external auditory canal to be dealt with.

There is anecdotal evidence to suggest that a milk-free diet may help to reduce mucus production that leads to infections and glue ear.

We feel that treatment of glue ear for children with Down syndrome is imperative.

Middle Ear Infections (Otitis Media) are particularly common in children with Down syndrome. This is due to the problems of poor drainage of the sticky glue and the fact that people with Down syndrome are more susceptible to infections of all kinds. The treatment of middle ear infections usually involves antibiotics and, potentially, one of the interventions listed above. Sensori-neural hearing loss is a poorly understood set of conditions in which the inner ear or cochlea malfunctions. The phrase is sometimes used to include problems in other parts of the central nervous system as well. It may be present from birth or develop in later life and the higher frequency tones are mostly affected. This may have a serious effect on understanding, since it is these frequencies which give speech most of its intelligibility. This type of hearing loss is often overlooked in the early stages because these children do not always behave as if they are deaf. They respond to many different sounds but tend to hear a rather low frequency rumble containing little real information. Those who can lip-read may sometimes be able to communicate to some extent. There is no cure in this group of conditions and those who benefit from the use of hearing aids continue to depend on them indefinitely.

Children with Down syndrome should be tested in a properly equipped and staffed audiology centre, as special testing techniques are sometimes required.

Following initial checks for newborns, a child should receive a full hearing check at about nine months of age, another at about 18 months and then annually until ten years of age. After the age of ten, testing every two years is considered sufficient.

Children with Down syndrome want to do what all children want to do: they want to sit, crawl, walk, explore their environment, and interact with the people around them. To do that, they need to develop their gross motor skills. Because of certain physical characteristics, which

  1. include hypotonia (low muscle tone),
  2. ligamentous laxity (looseness of the ligaments that causes increased flexibility in the joints) and decreased strength, children with Down syndrome don’t develop motor skills in the same way that the typically-developing child does. They find ways to compensate for the differences in their physical make-up, and some of the compensations can lead to long-term complications, such as pain in the feet or the development of an inefficient walking pattern.

The goal of physical therapy for these children is not to accelerate the rate of their development, as is often presumed, but to facilitate the development of optimal movement patterns. This means that over the long term, you want to help the child

  1. develop good posture,
  2. proper foot alignment,
  3. an efficient walking pattern, and
  4. a good physical foundation for exercise throughout life.

First, you observe what skills the child has already mastered on his or her own. Then you determine what the child is ready to learn next.

It’s critical that we teach children what they’re ready to learn within the next month rather than work on something that’s too advanced for them.

Once I know what skill the child is ready to learn, I develop a way to teach him that skill. I break the skill down into its component parts, and then I practice the skill with a variety of strategies to test with which method the child is most successful. The strategies are based on the child’s learning style and physical make-up.

Lastly and most importantly, I teach the parents how to practice the skill with their child. The parents can practice the skill when the child is feeling rested and strong, and the skills can be incorporated into the daily routine.

Through practice and repetition, the child will develop strength and efficiency, leading to mastery of the skill

  1. The development of gross motor skills is the first learning task that the child with Down syndrome and his parents will face together.
  2. This is an opportunity for parents to begin to understand how their child learns.
  3. Use these tips as a starting point to begin to explore your child’s learning style.


Determine what motivates your child. Your child is more likely to move when there is something motivating him. For example, he may crawl to get to a favorite toy. When practicing motor skills, your child’s success and enjoyment will depend on how you play, what types of toys you use, and where you place them.

Think how your child thinks. Figure out what gross motor skills your child likes to do and then build on those skills. For example, if your child likes to be on his belly, teach him pivoting, crawling and climbing; if he likes to sit, teach him to move into sitting by himself. Children often are motivated to learn skills in a different order and it is OK to follow your child’s lead and work on what he is ready and willing to learn

Basic skills are usually further divided into gross motor skills and fine motor skills.

  1. Gross motor skills are those concerned with whole body movement including sitting, walking, running and climbing stairs.
  2. Fine motor skills tend to be those requiring fine manipulation of fingers and hands including picking up objects, using cups, knives and forks, pouring drinks, dressing and managing fastenings, holding and using pencils, pens, scissors and keyboards.


Physiotherapists tend to be expert in the development of basic gross motor skills and occupational therapists tend to be experts in fine motor skills, although their skills will often overlap. Recreational skills tend to be taught by teachers, physical education experts, sports coaches and specialists such as music teachers.

Physiotherapists tend to be expert in the development of basic gross motor skills and occupational therapists tend to be experts in fine motor skills, although their skills will often overlap. Recreational skills tend to be taught by teachers, physical education experts, sports

Step 1: Determining A Child's Readiness,

Many parents are eager to start a toilet training program for their children. However, some parents may be ready to start before their children are ready. Starting before a child displays the necessary readiness signs will most likely increase the amount of time it takes for the child to learn this skill as well as decrease the amount of success he or she child experiences. Starting too early can also lead to other problems, such as an increase in undesirable behaviors related to toilet training and high frustration levels in the parent. To ease the toilet training process and ensure that it is a positive experience for everyone involved, it is recommended that parents assess their child's toilet readiness skills. Important signals of readiness are as follows:

  1. Age - The child has reached an appropriate age. It is recommended to wait until after the second birthday to begin considering toilet training. For children with Down syndrome, it has been found beneficial to wait until after the third birthday to begin the process. While age is an important componant of readiness, parents should consider other factors as well when considering toilet training.
  2. Bladder Control - The child completely empties his or her bladder when voiding and remains dry for at least one and one half hours during the day.
  3. Predictable Stooling Patterns - The child's bowel movements follow a regular and predictable pattern.
  4. Motor Skills - The child demonstrates the abilities to walk to and from the bathroom independently and to pick up objects.
  5. Behavior - The child can sit on the toilet (or potty chair) comfortably for two to five minutes. He or she may be allowed to look at preferred books or play with preferred toys while sitting on the toilet.
  6. Instructional Readiness - The child can follow a few simple directions (e.g. sit down).
  7. Indicates Needs - Through facial expressions, posturing, gestures, pictures or words, the child indicates needing to go to the bathroom.

Step 2: Determining Your Readiness

Before starting a toilet training program, parents need to be ready to dedicate time and effort to implement an effective program. If their child displays the necessary readiness signs but their own schedules do not allow them the amount of time needed to take their child to the bathroom on a consistent schedule every day, they may want to consider waiting to start until their schedules allow time.

Below is a form to help parents assess their child's bladder control, ability to demonstrate a need to go, and voiding pattern. Every 30 to 60 minutes, parents should check their child's diaper. They can then place a checkmark in each corresponding time slot that the child indicated a need to go. They should keep the data for two weeks. If, at the completion of two weeks, the chart shows that their child consistently remained dry for at least one and one half hours, consistently indicated a need to go, and displayed a voiding pattern, then the child may be ready for toilet training. If after two weeks, the data show that the child does not display the necessary skills, parents can decide to continue taking data or to stop and restart at a later date.,

Toilet Training Readiness Data Sheet

Step 3: Get set, go!

  1. Your days should look like this: Wake up, take off wet diaper, go to the bathroom. Put on big boy underwear or big girl panties.
  2. Go to the bathroom when you anticipate need to urinate or to stool. (Refer to your Toilet Training Readiness Data Sheet.)
  3. Make it fun! Allow your child to read a favorite book or play with a favorite toy while sitting on the toilet.
  4. Use a visual schedule to reinforce verbal directions to child.
  5. Use a reinforcer.
  6. Change your reinforcers from time to time.

Early Intervention (EI), is the process of providing services, education and support to young children who are deemed to have ……

  1. an established condition,
  2. those who are evaluated and deemed to have a diagnosed physical or mental condition (with a high probability of resulting in a developmental delay),
  3. an existing delay or
  4. a child who is at-risk of developing a delay or special need that may affect their development or impede their education.

The purpose of early intervention is to lessen the effects of the disability or delay. Services are designed to identify and meet a child’s needs in five developmental areas, including:


  1. physical development,
  2. cognitive development,
  3. communication,
  4. social or emotional development,
  5. and adaptive development

Therapy – Who Are They, How is it Evaluated, What Kind, and Purpose
Your EI team is composed of your therapists and your EI coordinator.

  1. Continual Evaluations: Every 3 months, the EI team goes over goals and about twice a year your child will be assessed and rated on a developmental scale.
  2. Don’t get hung up on the age rating of the scale. The assessments are a guideline. (example: don’t feel that your 18 month old child is behaving as a 6 month old just because that is the number on the assessment. Your child may be doing great on other things, but didn’t meet a certain milestone.)
  3. Types of therapy:
    1. Physical Therapy (PT),
    2. Occupational Therapy (OT),
    3. Speech, Education,
    4. Vision,
    5. Floor Time, (typically our children get PT, OT, education and Speech).
    6. Sessions don’t have to be in the living room or the childcare room. Encourage them to go outside on nice days in order to incorporate playground equipment, curbs etc.
  4. Therapy sessions are designed to teach you techniques to help your child reach his or her full potential in all areas of development where he or she is experiencing a delay. Being an active participant or staying abreast on the therapy sessions as well as following through on therapists’ suggestions are vital to your child’s success.
  5. As parents, you are the one that knows your child the best. The therapists are a great resource and a trained second set of eyes that help you define problems and can propose solutions to them (physical and behavioral).

“‘Sensory processing (sometimes called “sensory integration” or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or “sensory integration.”

‘Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”) is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly.

A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.’” Sensory integration (a.k.a. sensory processing) issues, especially as it relates to the senses, can cause a child to melt down or tantrum over things most people don’t even notice such as itchy tags in clothing, the hum of flourescent lighting, the normal noisy din of a restaurant, temperature being too hot or too cold, unfamiliar food or tactile textures, unfamiliar scents, and the list goes on and on.

Children and adults with Down's syndrome need regular check-ups to monitor their health. Certain health problems may be more likely to develop in people with Down's syndrome, so it's important to monitor their health to detect and treat any problems as soon as possible.

There are a number of different healthcare professionals who will monitor and treat someone with Down's syndrome. These may include:

  1. a physiotherapist – a child with Down's syndrome will often have physiotherapy from a young age to help them improve their range of movement by helping them learn to roll over, sit up or walk
  2. a speech and language therapist – children with Down's syndrome may have problems learning to speak. A speech and language therapist can help them learn to communicate more effectively.
  3. an occupational therapist – occupational therapy gives people practical support to help them live more independently
  4. a dietitian – obesity rates are particularly high among adults with Down's syndrome. A dietitian (an expert in food and nutrition) can draw up a dietary plan tailored to a person's needs, which will ensure they are eating a healthy, nutritious and well-balanced diet.
  5. a social worker – people with Down's syndrome may need help overcoming social problems, such as finding accommodation or applying for financial benefits. A social worker can help them do this, enabling them to live more independently.
  6. an audiologist – an audiologist (an expert in diagnosing and treating hearing conditions) will monitor hearing to detect problems as soon as possible
  7. an ophthalmologist – people with Down's syndrome have an increased risk of developing eye problems, such as eye infections and cataracts. An ophthalmologist specialises in treating these conditions.
  8. a paediatrician – a paediatrician is a doctor who specialises in treating children. They will often help co-ordinate the different types of treatment your child needs.

Down syndrome is a genetic disorder commonly resulting in slower learning, impulsive behavior and short attention span. Musical activities can be beneficial to students with Down syndrome because these students learn best with lessons that are repetitive and engaging.

Music is fun for most people and will help a child to pay attention because it is like a game.

The rhythms and repetitiveness of music will help a student with Down syndrome remember something more easily than simply telling him.
Music stimulates the whole brain, making it an excellent learning tool for children with Down syndrome.

Children with Down syndrome often stick out their tongue when talking, due to lack of muscle control. ,
Sit with the student in front of a mirror and play a fun song that the student likes. Sing with the student while you are both looking at the mirror. The student will see her own tongue and can try to model how you use your tongue when you sing

Every person with Down syndrome is a unique individual and may possess these conditions to different degrees or not at all

Some of the first things all children learn in their preschool years are the alphabet, how to count, their address and phone number. One of the easiest ways for young children, and children with Down syndrome of all ages, to remember these sequences of information is to put it to a song.

You can use pre-made songs for the alphabet or counting, or you can make up a simple, catchy tune.

You can make this work for any age or developmental level of the student and for any piece of information or simple directions that needs to be remembered.

An additional bonus is that most children with Down syndrome find music motivating, so students will pay more attention and be excited to repeat their songs and will therefore learn the information easily in many cases.

Incorporate music with movement to encourage motor, hand eye-coordination and cognitive skills. Simple activities can include dancing to a song or having a ball catch to music.

  1. Cognitive skills can be increased by tossing a ball to music.
  2. Stop the music periodically.
  3. Each time the music is stopped, the student must practice a skill that is currently being worked on.
  4. For example, if you are working on rhyming with the student, each time the music is stopped the student can say a word that rhymes with "cat".

Brain Gym exercises are short activities teachers can do with their students to release stress, expend excess energy and enhance learning.

Each exercise can be done in a small area in the classroom or at the student's seat. They are generally fun movements that are designed to engage the brain.

While many of the activities work best with younger students, older students and even adults can benefit from Brain Gym exercises.

As Carla Hannaford says, "Water comprises more of the brain (with estimates of 90%) than of any other organ of the body." Having students drink some water before and during class can help "grease the wheel". Drinking water is very important before any stressful situation - tests! - as we tend to perspire under stress, and de-hydration can effect our concentration negatively.

Did you know..that cross-crawl technique is one of the easiest ways to activate your brain development and nervous system to give it the proper motor and sensory stimuli it needs to take control of your bodily functions—thereby preventing or rehabilitating health problems?

Until a baby learns to crawl she moves in a homolateral pattern. (pertaining to the same side of the body.)

This means that the right hemisphere of the brain controls the right side of the body and the left hemisphere of the brain controls the left side of the body.

If we failed to mature past this pattern of movement, our gait would be awkward and uncoordinated, with the right hand and right leg jutting forward at the same time.

However, as soon as a baby begins to crawl, she activates the contra-lateral pattern of movement that is essential to her brain development and nervous system. She learns to reach out with her right arm as her left knee juts forward, and move her left arm forward as she picks up her right knee. We continue to learn this cross-crawl movement as we advance to walking, running and swimming.

The cross-pattern movement builds the bridge between the right and left hemispheres of the brain, allowing for electrical impulses and information to pass freely between the two.

These patterns are stored in the brain and are responsible for governing our nervous system, spinal muscles and coordination, and programming our bodily systems to work together as a team.

Unfortunately, we carry the experiences we have as an infant into adulthood. Your motor function or brain development might have been impaired due to improper conditioning, inadequate development or trauma experienced as a child or an adult.

When your body suffers a shock, your nerve impulses become jumbled. When your nerve impulses are disorganized, so are your motor impulses and sensory impulses, endangering your overall health.

All of your bodily systems depend on cross-crawl integration, even cerebral activities, such as learning language, reading, hand-to-eye coordination and communication.

Signs that your cross-pattern movements could use some sharpening include:

  1. Lack of coordination and balance
  2. Difficulty reading
  3. Exhibiting learning disabilities, such as dyslexia
  4. Clumsiness
  5. Stuttering
  6. Saying things backwards

Fortunately, you can reprogram your nervous system and strengthen the connection between the right and left sides of your brain using cross-crawl exercises. Remember, nerves are very much alive and willing to learn new things; they die if not stimulated!

Engaging in a cross-crawl exercise regimen will…

  1. Promote all-over healing
  2. Reduce stress
  3. Improve focus
  4. Increase energy
  5. Develop whole-brain functioning ,

  1. Stand with your spine erect and arms at your sides.
  2. On an inhale, raise your right arm up. At the same time you raise your right arm, lift your left leg, bending at the knee.
  3. On an exhale, lower both the right arm and left leg.
  4. On an inhale, raise your left arm up. At the same time, lift your right leg, bending at the knee.
  5. On an exhale, lower both the left arm and right leg.

Full range of motion, not speed, is the most important component of this exercise. The higher you lift your arms and legs, the more you are energizing the brain development becomes, encouraging it to store new, more effective patterns of movement.

  1. Use the breath to help you slow down the movements.
  2. Slower movements require more precise control, which delivers greater benefits, faster.
  3. Experts recommend 200 to 500 repetitions a day, but it is important to stop at the first sign of fatigue

This exercise helps improve blood flow to the brain to "switch on" the entire brain before a lesson begins. The increased blood flow helps improve concentration skills required for reading, writing, etc.

  1. Put one hand so that there is as wide a space as possible between the thumb and index finger.
  2. Place your index and thumb into the slight indentations below the collar bone on each side of the sternum. Press lightly in a pulsing manner.
  3. At the same time put the other hand over the navel area of the stomach. Gently press on these points for about 2 minutes.

This works well for nerves before a test or special event such as making a speech. Any situation which will cause nervousness calls for a few "hook ups" to calm the mind and improve concentration.

  1. Stand or sit. Cross the right leg over the left at the ankles.
  2. Take your right wrist and cross it over the left wrist and link up the fingers so that the right wrist is on top.
  3. Bend the elbows out and gently turn the fingers in towards the body until they rest on the sternum (breast bone) in the center of the chest. Stay in this position.
  4. Keep the ankles crossed and the wrists crossed and then breathe evenly in this position for a few minutes. You will be noticeably calmer after that time.

Six years ago researchers reported that people scored better on a standard IQ test after listening to Mozart. You would be surprised at how much music can also help English learners.

The use of colored pens to help the right brain remember patterns. Each time you use the pen it reinforces the learning process.

Students draw figure 8s either in the air with their fingers or on a piece of paper.

  1. When students use their non-dominant hand to draw the figure 8, it engages the creativity portions of the brain, making this variation a good warm-up for art or creative writing lessons.
  2. Drawing figure 8s with the dominant hand loosens up the muscles in the arm and wrist, and serves to ready students for writing essays.
  3. The figure 8s should be drawn quickly and loosely.
  4. Students should spend about one minute drawing figure 8s before beginning an activity.
  5. Children with Down syndrome usually learn and progress more slowly than most other children therefore their development tends to be delayed in relation to chronological age. However, not all areas of development are equally affected. There is a specific pattern of cognitive and behavioural features that are observed among children with Down syndrome that differs from that seen in typically developing children and children with other causes of intellectual disability. We refer to this pattern of characteristic strengths and weaknesses as a 'developmental profile'.

Expressive language is one example of an area of particular difficulty. Children with Down syndrome show specific delays in learning to use spoken language (relative to their non-verbal understanding). Almost every child will have expressive language that is delayed relative to their language comprehension

Verbal short-term memory is another example of a particular weakness. The ability of children with Down syndrome to hold and process verbal information is not as good as their ability to hold and process visual information. These verbal short-term memory problems make it more difficult to learn new words and sentences.

Although the most important influence on early development is daily interaction and activities within the family, children with Down syndrome also benefit from structured learning opportunities. Families are encouraged to access the early learning and intervention services that are available from infancy. This will support the development of some of the most important early childhood skills.

Socially appropriate behaviour should be encouraged and expected right from the beginning. Children with Down syndrome benefit from boundary setting in the same way as other children. Parenting a child with Down syndrome will, in many ways, not be very different from parenting any other child. Good parenting practices apply to all children. And for all children, consistency of approach is important.

Most babies and young children with Down syndrome can and do attend childcare centres, playgroups and preschool settings alongside children of the same age. They will learn a great deal from joining in with other young children.

Early learning and intervention specialists work with families to encourage learning and development in the daily life of the child.

Children with Down syndrome can be included in all activities and should have the same expectations placed on them for good behaviour and responsibility as other children do. There are no behaviours specific to children with Down syndrome. However, sometimes the inability to express themselves with words can lead to frustration. Instead, children with Down syndrome will try to express themselves through behaviours – sometimes undesirable ones.

Children with Down syndrome can attend the school of their parents' choice. In the past, many young people with Down syndrome have attended separate schools for students with intellectual disabilities. However, research shows that the majority of children with Down syndrome make the best progress when they are educated in mainstream schools alongside their peers.

A student with Down syndrome is more likely to experience success in a school where inclusion is embraced and supported as part of the school culture, and where the different learning needs of all the students are acknowledged and properly addressed.

The best outcomes are achieved when appropriate support is provided to teachers to fully include the student in the class.

Children with Down syndrome should be provided with additional support to access the regular curriculum. The level of support and amount of program modification required will vary from one student to another.

Children with Down syndrome attend mainstream playgroups, preschools, childcare, kindergartens and schools. Like all children, those with Down syndrome display a wide range of abilities, but most children with Down syndrome will usually take longer to learn new things. If encouraged to do so, people with Down syndrome continue to make steady progress and will continue learning throughout life.

Although the most important influence on early development is daily interaction and activities within the family, children with Down syndrome also benefit from structured learning opportunities. Families are encouraged to access the early learning and intervention services that are available from infancy. This will support the development of some of the most important early childhood skills.

Socially appropriate behaviour should be encouraged and expected right from the beginning. Children with Down syndrome benefit from boundary setting in the same way as other children. Parenting a child with Down syndrome will, in many ways, not be very different from parenting any other child. Good parenting practices apply to all children. And for all children, consistency of approach is important.

Most babies and young children with Down syndrome can and do attend childcare centres, playgroups and preschool settings alongside children of the same age. They will learn a great deal from joining in with other young children.

Early learning and intervention specialists work with families to encourage learning and development in the daily life of the child.

Children with Down syndrome can be included in all activities and should have the same expectations placed on them for good behaviour and responsibility as other children do. There are no behaviours specific to children with Down syndrome. However, sometimes the inability to express themselves with words can lead to frustration.

It is often necessary to look beyond a behaviour and find the real message that the child is trying to express. This helps to understand and deal with the behaviour.

It is often because of a lack of understanding about the underlying cause of a behaviour that people with Down syndrome are labelled as being stubborn… Children with Down syndrome should be provided with additional support to access the regular curriculum. The level of support and amount of program modification required will vary from one student to another.

The Right to Education (RTE) Act has made elementary education a right for all children between the ages of 6 and 14, promises to revolutionise the education sector.

All children have the right to be educated regardless of their disability or learning difficulty, because education is a human right. Exclusionary policies and practices however, are widely prevalent all over the country. Many premier schools in the country deny admission to disabled children in violation of their right to education.

On behalf of the 20th Joint Review Mission (JRM) SudhirMankad…Oct 2014 the mission notes that Tamil Nadu stands at the forefront in the delivery of education services.

What was the goal….to ensure a coordinated and evidenced based response to challenges faced in the education system.

How did they do it….. For example at the State level, monthly meetings are held with the various education departments to develop strategies to address issues…At the block level, resource officers and block resource teachers, funded under SSA, meet regularly to develop interventions to address challenges faced by schools in their block. As a result, Tamil Nadu, as detailed in later in the Aide Memoire, has successfully advanced the implementing of many important initiatives like supporting children with special needs, access to primary and upper primary education and quality of education.

The team visited several resource centers which should serve as a model to other States on how to ensure inclusive education. The State should serve as an example to other States and countries struggling with similar challenges.

Tamil Nadu's rules for implementing the Act makes them eligible for admission to a private, neighbourhood school by including children with disabilities in ‘disadvantaged groups', under the provision to reserve 25 per cent seats. However, inclusion of students with disabilities will warrant certain specific provisions, including an accessible curriculum, teacher training programmes and sports, say activists. “Most of the children who have been integrated into mainstream schools are happy in their new surroundings because there is so much new to learn. But a few come back too, citing a lack of basic understanding from new peers and teachers.g in the area.

Keeping in mind, the developments that have taken place in the last two decades, in the field of education of the disabled, it is clear that to fulfill the goal of Education for All there has to be constant monitoring of children with special needs and disabilities.

It is not that we are against special education, but because of the advent of special education, and the segregation, (last year over 3000 special schools have sprung up in India) thereof, the general population is not exposed to the disabled people and don’t know how to react.

By segregating people with challenges especially the people with DS, people in the mainstream society do not get an opportunity to interact with these people and therefore are not sensitized to their needs.

If we, as a society are exposed to disabled people, from the very inception and interact with them, the phenomena of de-labeling will also gain strength.