Caring for a child with Down Syndrome
Every life is precious and no matter who you are, you’re guaranteed to face a variety of challenges from the minute you’re born.
Parents are often inspired and amazed by their children’s achievements, particularly if their child is living with a physical disability or with special educational needs.
As today marks World Down Syndrome Day, our Occupational Therapist, Rachel, tells us what it’s like to raise a child with Down Syndrome.
Down Syndrome defined
Down syndrome is a genetic condition caused by the presence of an extra chromosome 21 in the body’s cells. In the majority of cases, Down syndrome is not an inherited condition, nor is it a disease. Down syndrome occurs because of a chance happening at the time of conception.
What to expect after diagnosis
Our Occupational Therapist, Rachel, explains “Many new parents go through a grief process following the diagnosis of their child’s condition. The dream baby they imagined for nine months or more, the baby without Down Syndrome, is not there.
“However, there is still a child needing a lot of love and care, so in addition to grieving for the baby they imagined, new parents develop feelings of love and joy for the baby they have. It can be a very confusing and frightening time.”
Individuals with Down syndrome will have some degree of learning disability and possibly physical disability, a high chance of heart problems and bowel problems. Hearing and sight impairments are also very common. The learning disability affects a child’s ability to learn compared with other children of their age, it does not mean they cannot learn.
The most important thing to remember is that everyone with Down syndrome is a unique individual and will learn at their own pace. It’s vital to be patient and therefore enable their skills to develop at that pace, whilst providing the practical help and support that may be needed to encourage these developments.
How can quality of life be improved?
Although it’s vitally important to have good medical support from your local GP, Health Visitor, Paediatrician, Physiotherapists, Occupational Therapists, Audiology etc., Rachel also feels that more awareness needs to be raised about Down Syndrome for those living with it to be better understood and accepted in the wider community.
“It would be wonderful for people to be better educated on how a learning disability really affects a child with Down Syndrome so that some of the myths can be displaced. I have been told a hundred times by well meaning people that children with Down Syndrome are “so affectionate and loving”, like it’s a compensation for having a child with a learning disability. In my experience, my son with Down Syndrome is no more or less affectionate than his brother who has no learning disability. Having a learning disability does not alter the fact that Down Syndrome individuals have emotions and feelings just like everyone else – and these vary, just as everyone else’s do!"
Support from voluntary and charity organisations can also be a great help in providing advice, practical information and assistance throughout your journey supporting and providing care for a person with Down Syndrome, for example: the Down’s Syndrome Association and The Down’s Heart Group, These charities are specialist in their field and can help with the practical challenges, such as battling through the minefield of social care and support eligibility.
Products to build social and motor skills
Children with Down Syndrome often have poor hand to eye coordination and their fine motor skills can be significantly reduced due to global developmental delay. NRS adapted cutlery, plates and Dycem matting are very effective for encouraging independent feeding; the matting stops plates from slipping around and the cutlery design ensures a person is able to effectively put food to their mouth and eat. Promoting self efficacy, feelings of self worth and independence.
When it comes to the bathroom, a Toilet Platform with Handrails can be invaluable. Some children with Down Syndrome have difficulties reaching the toilet and remaining seated due to poor balance and co-ordination, but the platform enables independent access to the toilet.
As for all children, toys are critical for encouraging self development and engagement with others. Children with Down Syndrome can respond positively to a different kind of stimulation to cumulate a positive response, which is where sensory toys and an Early Activity system can really make a difference.
The NRS difference
Not only do NRS Healthcare offer a range of equipment to help children with a learning disability thrive independently, they also employ a team of professional Occupational Therapists whom customer’s can speak to about their individual requirements. Our OT’s have a wealth of knowledge and experience, so they can advise you which products are best suited to your needs.
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- May 13th 2020