5 Tips for Raising a Child with Down Syndrome

It would probably be safe to say that most parents only wish the best for their children, right from the very beginning, when the woman discovers that she is pregnant. From that time on, all they want is for their child to be completely healthy in all aspects.

How should one react then when one goes for a routine check-up, including an ultrasound and screening blood test, only to be told that the child you are carrying may have Down Syndrome (DS)? For many parents, the news could be quite shocking, and may even leave some afraid and unsure if they are capable of raising a child with such a condition. Sadly, some, especially those who are misled or misinformed, may even resort to the cruel act of aborting their babies, just because they have DS.

If you or someone you know are parents of children with DS, do not fear. Many parents who have come before you learned to accept and deal with their children’s conditions, and ended up raising functional, contributing members of society. (A few examples are Chris Hebein, Molly Bourke, Elyse Mundelein and Zach Wincent).

What is Down Syndrome (DS)?
According to the U.S. National Institute of Child Health and Human Development, Down Syndrome is a set of mental and physical symptoms brought about by having an extra copy of Chromosome 21.

Under normal circumstances, a fertilized human egg has 23 pairs of chromosomes. However, most people with Down Syndrome have an extra copy of Chromosome 21 (also called trisomy 21 because there are three copies of this chromosome instead of two). The presence of trisomy 21 leads to changes in the body’s and brain’s normal development. DS is actually the most common chromosomal irregularity in humans.

People with DS differ greatly in how they are affected, with health problems and lagging mental and physical development as common symptoms. Some children may also have delayed language development, and most kids with DS show these common physical traits:
•    Flat face with an upward slant to the eye, short neck, and differently-shaped ears
•    Deep crease in the palm of the hand
•    White spots on the iris of the eye
•    Poor muscle tone, loose ligaments
•    Small hands and feet

DS-affected children are also often known to exhibit the following health conditions:
•    Congenital heart disease
•    Skeletal problems
•    Hearing problems
•    Eye problems, such as cataracts
•    Intestinal problems, such as blocked small intestine or oesophagus
•    Thyroid dysfunctions
•    Dementia, similar to Alzheimer’s disease

Since Down Syndrome is an incurable condition, parents must make sure their children are assessed and given therapy as soon as possible, as early intervention has helped many kids with DS live productive lives all the way into adulthood. This usually involves speech therapy, occupational therapy, physical therapy, and special education and attention in school.

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Needless to say, children with Down Syndrome, like other children with special needs (for e.g. cerebral palsy), need extra love and care from their parents.

If you are among the special parents called to care for a child with DS, here are some tips for you:

1. Find a support group.
Parents may feel overwhelmed, maybe even depressed, when they first learn that their baby has DS. It usually helps to talk to other parents who are in the same situation. They can help give you tips and point you to doctors, therapists and resources that may be of help to you.

Locally, parents can get in touch with the Down Syndrome Association of the Philippines located at the 2nd floor, 6732 Agrifina Building, Camia corner Meleguas Streets, Guadalupe Viejo, Makati City. (Tel. no: 62-2-8953606; E-mail: dsapi@hotmail.com)

2. Bond with your child through attachment parenting.
When parents respond to their baby’s emotional cues, they can better sense what he or she needs, even when he or she can’t tell you. Make sure too that you involve other family members in raising your child with DS. You will soon find out how blessed you are to have such a child in the family!

3. Seek out good medical practitioners.
When looking for a pedia, make sure that he or she is familiar with DS, or better yet, has experience relating with patients with DS. People with Down Syndrome are usually at risk for varied medical problems, most common of which are heart defects, vision and hearing impairments. Your child needs to be screened by cardiologists, ophthalmologists and audiologists.

4. Avail of early intervention services right after birth.
Children with DS may need physical and speech therapy if delays in these areas are present. Some kids may also exhibit some degree of mental retardation.

5. Ask professionals to teach you what you can do at home to help your child develop.
Kids with DS usually have weak muscle tone and will benefit a lot from movement therapy, or perhaps even music and movement classes such as those given by Gymboree, Kindermusik or Musikgarten. You may also want to teach your little one sign language to help compensate for speech delays.

Lastly, but most importantly:

6. Love your child and enjoy the gift of life you have been given through him or her.
Parenting in itself is a daunting task, so make sure you embrace your role with faith, hope and love. Many parents of kids with DS can testify that their kids are deeply affectionate and seem to approach life with great joy. You and your family and friends will realize how wonderful life is just by spending time with your child, or other people with DS.

Sources:
http://www.nichd.nih.gov/
http://www.downsyndrome.com

Photo from sadsin.blogspot.com