I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide- books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
Congenital Heart Disease
Congenital heart disease (heart disease which is present at birth) is very common in children with Down syndrome. Around 40-50% of newborns with Down syndrome will have some type of congenital heart defect. This will often require medications and some type of intervention such as open-heart surgery or a cardiac catheterization. Sometimes the defects are relatively minor and do not need any treatment. Fortunately, nowadays the overwhelming majority of congenital heart defects in infants and children with Down syndrome can be fully corrected. You are most likely overwhelmed with all the new diagnoses: the diagnosis of Down syndrome, the diagnosis of congenital heart disease. It is important to realize that you are not alone. Other parents with similar experiences and the Down Syndrome Aim High Resource Center are available for support. Your pediatric cardiologist will monitor and see your child as much as needed and make sure that the best possible medical care is provided.
If you take extra care and consideration, your baby has a very good chance of having a healthy childhood. You will find that there are risks for extra health concerns but that does not necessarily mean that your child will have any of these problems. While there is a fairly long list of possible health concerns, most of these are unlikely to occur and actually are fairly uncommon. Monitoring for these health issues will help to find these problems early if they exist--and early care can go a long way toward minimizing the problem. Good child health care is important for your child and needs to start with the basics. The regular well-child visits to your provider offers lots of opportunities to investigate problems, to consider upcoming issues, and to practice prevention. Here are some of the issues that you will want to emphasize.
Careful evaluation of a person with Down syndrome who has a decline in function has broader public health implications. Many of the adults we have seen for a decline in function have either previously been given the diagnosis of Alzheimer's disease or there was a strong suspicion by the family or caregivers that the person had Alzheimer's disease. In discussing the concern with the family or caregiver, it is clear that many people believe that all persons with Down syndrome will develop Alzheimer's disease. Our experience and the research of others would suggest that not all persons with Down syndrome will develop clinical dementia stemming from Alzheimer's disease. The exact prevalence of Alzheimer's disease in persons with Down syndrome is still being investigated.
A review of diagnosed disorders from the current clinical sample of the Adult Down Syndrome Center supports previous case reports showing reversible disorders, such as depression, to be a predominant cause of loss of functioning in this population. Of the 443 adults with Down syndrome seen at the Center, 148 (33%) have presented with a decline in function.
Learning to speak, as well as learning in general, becomes even more of a challenge when someone is faced with an additional disability of not hearing or not hearing clearly. Learning to read, if one cannot clearly distinguish sounds or hear sounds, can be frustrating. Early detection of hearing problems with children in general and our children with Down syndrome is essential. Otolaryngologists (Ear, Nose, Throat physicians/ENT) and audiologists are the professionals who can help diagnose and treat hearing problems.
In the metropolitan Chicago area, the NADS has been providing advocacy services for persons with Down syndrome since 1961. This voluntary association was started by parents of young children and, therefore, for a number of years their focus was on children and adolescents with Down syndrome. However, as their sons and daughters grew beyond childhood, new concerns became evident.
When an adult with Down syndrome is diagnosed with Alzheimer's disease, we focus on "the four S's": Safety, Stability (of the environment), Social (emotional) issues, and Symptoms. As the adult with Down syndrome experiences greater decline, family or caregivers will often have difficulty maintaining a safe environment. Falling because of gait apraxia, wandering from home, and touching or using objects in the home that can be harmful if used inappropriately (e.g., the stove) can all be problems that the family or caregiver cannot prevent. In addition, when the adults become bed-bound, frequent turning or changing the position to prevent bedsores is necessary and may be more than the family can provide. Safety is frequently the concern that requires a change in living arrangements and, if no specialty care programs are available, may require admission to a nursing facility.
As new parents of a child with Down syndrome, you already have your hands full just trying to get acclimated to this new country, to obtain the correct guidebooks and learn a few words of Dutch. Therefore, you are understandably skeptical when someone suggests that one of the new people you should meet is a physical therapist. They are recommending that you start your new infant in regular physical therapy. Why physical therapy? Don't children with Down syndrome learn to walk and run, just like other children do?
When Sindoor Desai gave birth to a son with Down syndrome 23 years ago, doctors told her not to expect too much. "It was a long time ago. Peoplewere not so aware," said Desai, a dentist in Cleveland, N.Y., who said she and her husband decided to raise their son like a typical child. "We simply explained to him that he just needs more time to learn."
In April, Carrie Bergeron addressed a crowd at a black-tie fund-raiser in Michigan, held by Band of Angels Foundation, a group that supports people and families living with Down syndrome.
MIA PETERSON is not a fan of tests. Because she has Down syndrome, she says, she cannot always think as fast as she would like to and tests end up making her feel judged. A recent driving test, for instance, ended in frustration.
SARAH JACOBS' son Jed, 9, has a learning disability. He's easily distracted and, if asked to do too many things at once, panics. At his former school, a private academy that cost $20,000 a year, his mother says Jed got into trouble daily ("kicking and even some biting") and stopped learning. "He was reading 'Captain Underpants' in kindergarten and he was in third grade and still reading 'Captain Underpants,'" she says.