Raising a Down's Syndrome child

Melissa Bonnick-Anderson, Contributor

Wednesday, March 21, 2012 marked the seventh annual celebration of World Down's Syndrome Day. However, this year, 2012, World Down's Syndrome Day will be celebrated by the United Nations for the very first time. This year every single country around the world had the privilege of joining with World Down's Syndrome International to help raise awareness of what Down's syndrome is, what it means to have Down's syndrome, and how people with Down's syndrome play a vital role in our lives and communities.

This year, Jamaica, posted their plans for involvement in this grand cause on the website of World Down's Syndrome International. We need to continue to lift our voices in unison with the international community as the notes crescendo in a commanding performance across the world.

The world wants to know what Jamaica is doing for individuals with Down's syndrome. We need to show the world we believe that children and adults with Down's syndrome should have equal opportunities. On the flip side of that coin, every parent and family of children with Down's syndrome all over Jamaica should be provided information about the resources that are available here on our island. This is an area of great concern to me and one which I will continue to address - the education and support of all mothers who are expecting and have had babies with Down's syndrome. This is crucial to early intervention and for realising the full potential of each Down's syndrome child.

Many health challenges

Raising a child with disabilities is no walk in the park. The challenges are numerous. The child with Down's syndrome experiences many health issues and developmental delays from birth, some of which may present in the inability to latch on or swallow during breastfeeding and poor oral motor. Later on, this usually results in speech problems. The Down's syndrome baby may also have other health problems which affect the heart and walking, to name a few.

So, how do these issues impact parents and families and how do they cope. Are there services which help Down's syndrome babies at birth?

Meet Marlene. She is the mother of Christopher. Christopher was diagnosed with Down's syndrome as a baby and a friend told Marlene about a service in Kingston that could help her. Marlene started Christopher when he was about three months old in this programme. She told me that the first visit was an assessment by a nurse and one of their social workers. The purpose of the assessment was to determine where he fits on a 'Denver assessment scale'.

According to Marlene, back then, they assigned a social worker to you and that person would visit your home (or school, based on the child's age) and give you a series of guidelines for the child. The guidelines covered speech, occupational therapy and general skills. The case worker typically spent about 45 minutes with the child and gave a copy of guidelines. Unfortunately that year, they cut back on weekly visits, to once every two weeks. They were also thinking of ending the visits and they told her that a lack of funds was driving this move. Eventually, they asked parents to take the child in to their location but Marlene was not able to do that.

Good programme

Even though this was a good programme, Marlene felt that there were aspects of it that could be improved to benefit more parents and improve the services. Unfortunately, the programme was really most accessible to Down's syndrome babies in the Corporate Area while parents in rural areas had to travel to Kingston for an assessment. There was also a dire need for speech therapists. The therapist had to see so many children that Christopher was only able to receive speech therapy once every six months.

One of the most noticeable physical defects of Down's syndrome babies is tongue thrust, where the protrusion of the tongue prevents them from speaking clearly. As a result, frequent and consistent speech and language therapy is important for improvement.

I was really blown away by the suggestions of this mother for improvement in the services offered to Down's syndrome babies. I thought they were valid and should be given serious consideration; more so, because I am greatly concerned about the parents who are not financially able to pay for help and who live in rural areas far away from services. Marlene believed that this programme, which is an extension of the Jamaica Council for Persons with Disabilities, should receive more funding so that it may be able to set up offices and clinics in every parish.

They could also partner with a school that trains speech and language therapists locally or overseas, and invite these therapists to do their rotations and clinicals here in Jamaica. This would help in supplying the needed speech therapists. She also felt that the Council for Persons with Disabilities needed to collaborate with hospitals and clinics to issue information to parents about the programme as soon as disabilities are detected in babies.