When an individual is born with an extra chromosome (over and above the usual 46), they are said to have a developmental disorder called Down syndrome. The Centers for Disease Control and Prevention (CDC) mentions that the extra copy is usually chromosome 21.
This phenomenon has a medical term called ‘trisomy.’ Since the extra copy of chromosomes can interfere with a baby’s body and brain development, they have to live with physical and mental challenges.
Some common physical attributes of someone born with Down syndrome include –
- A flattened visage, primarily the bridge of the nose
- Small ears and a short neck
- A tongue that typically protrudes out of the mouth
- Eyes that are almond-shaped and slant a bit upward
- Loose joints or poor muscle tone
- A short height
- Tiny white spots on the eye’s iris
Every year, around 6,000 babies across the US are born with this condition. When a child is diagnosed with Down syndrome, it is natural for parents to experience feelings of guilt, loss, and a fear of the unknown.
Just know that you’re not alone, and this is not your fault. There are several ways in which you can support your child to help them enjoy a happy and meaningful life. In this article, we will discuss five helpful tips to raise a child with Down syndrome.
Start with Prenatal Preparations
As mentioned previously, Down syndrome is a genetic chromosome 21 disorder. This means it is possible to diagnose this condition even before a baby’s birth. Fetal DNA testing using maternal blood can reveal the likelihood of Down syndrome.
If such a diagnosis is made, consider making some prenatal preparations to help your child. This may involve researching thoroughly about the chromosomal condition, joining a support group, and sharing concerns with trusted loved ones.
You can discuss your fears with your medical provider. They will brief you on the possible interventions your baby may need, especially immediately after birth.
Provide Early Intervention and Ongoing Medical Care
Due to the speech and developmental challenges that children with Down syndrome face, they need regular medical check-ups. Moreover, it can all seem a bit too overwhelming to manage on your own at the beginning.
Seeking medical assistance and support can provide your child with the care they need at every stage of life. As per the Eunice Kennedy Shriver National Institute of Child Health and Human Development, there is no single standard treatment for this condition.
It is mostly based on individual children’s developmental and intellectual needs. Generally, nurses are assigned to address the situation through early intervention services like speech therapy, physical rehabilitation, etc. Some have even pursued online second-degree ABSN nursing programs to apply their passion for helping children with special needs.
These healthcare professionals will walk the extra mile on your behalf and your child’s. According to Marymount University, the demand for caring and skilled nurses continues to grow. This is especially true of those catering to children’s developmental needs. Nursing interventions will also involve –
- Providing nutrition counseling based on the child’s ability to swallow and process information
- Educating parents on ways to take proper care of their child’s unique needs
- Offering emotional support and motivation whenever required
- Reporting any changes in the child’s behavior or mood that may call for additional treatments
Create a Fixed Schedule
A definite routine or schedule is important for every individual to function properly. When it comes to children with Down syndrome, this practice can help them live a healthier lifestyle. This, in turn, will increase life expectancy, the average of which ranges between 47 and 50 years.
Consider involving them in the process of fixing a schedule. Ask them about their favorite hobbies and activities, and incorporate at least one of those each day. Waking up and going to bed at fixed hours, eating nutritious meals, and regular exercise will offer them a high quality of life.
Let Them Have Their Autonomy
Children generally need a certain degree of freedom to make their own decisions. Any imposed restrictions will be seen as a means to control and constrain. The same goes for those born with Down syndrome.
These individuals indeed face challenging developmental and speech delays, but that does not mean they must be barred from making simple decisions. If you constantly choose what’s best for them (even in terms of preferences), you could put your child’s mental health at risk.
They may believe that they are incapable of living life by themselves. Allow them the appropriate freedom to choose what to eat, wear, and do with their free time. This will offer them the satisfaction of having control over their lives. Hold their hands and guide them gently when the situation calls for it, but also let them have a certain degree of autonomy.
Connect with Other Parents
Sometimes, you may feel the need to connect with more than just healthcare professionals. This is what makes it so important to have a support group of other parents online and offline.
The sense of community will help you feel that you’re not alone in this struggle. Other parents have walked this path before you, and many continue to do so. They will be happy to help you navigate the challenges as you celebrate your child’s existence and milestones.
Finally, you cannot neglect your personal needs in the process of supporting your beloved child. Being a parent to someone with Down syndrome can be a challenging journey. Things become even more difficult when you’re juggling work, home life, and caring for your baby’s special needs.
Practice self-care and offer yourself much-needed ‘me-time’ whenever possible. Pamper yourself with experiences, things, and people that heal you. If matters get out of hand, seek counseling, but most importantly, remember that you’re not alone.
It’s alright to make mistakes in this journey and learn from them. The key to raising a child with Down syndrome lies in extending kindness to yourself and your baby.
Throughout his career, Andras Kovacs has developed a deep understanding of DNA and its applications in genealogy and genetic testing. He has helped thousands of individuals uncover their ancestral heritage, using cutting-edge DNA analysis to trace family lineages and reveal connections across generations.