Being the parent and/or caregiver of a child with a serious medical condition comes with a long list of worries — how did it happen? What’s the best kind of treatment? How can you ensure your child has the best possible care and relatively normal life? Fragile X syndrome (FXS) is one of those rare conditions most people have never heard of — until it affects someone they love. If you’re the parent of a child who was recently diagnosed with FXS, you may be wondering what’s the best approach to provide them with the loving care they need.
What is Fragile X Syndrome?
Fragile X Syndrome is a genetic disorder that prevents adequate brain development. As a result, it has an impact on most aspects of a child’s life — from their cognitive abilities and ability to learn to their physical appearance. While symptoms are more severe in boys, they can also affect girls and can increase the likelihood of behavioral issues, anxiety, and developmental delays. It’s also the most common cause of intellectual disabilities. The condition is inherited and has no cure.
If your child hasn’t been diagnosed with FXS but is not sitting, walking, talking, or making eye contact at an age where other children of the same age do, you and your child should undergo genetic testing to find out if this is the reason. The earlier the condition is diagnosed, the better the chances of helping your child learn essential life skills and obtain needed physical, occupational, and/or speech therapy.
10 Tips for Caring for a Child with FXS
1. Know that you’ll need a team
Early intervention is crucial — and so is enlisting several professionals to help you care for your child, including a pediatrician, occupational therapists, speech pathologists, physiotherapists, special education teachers, and psychologists. Soon after diagnosis, the entire team should get together to discuss the best approach to care for the child and set goals together — regarding feeding skills, how to teach them to get dressed, and how to deal with social anxiety, among others.
2. Be patient
Children with FXS develop motor and cognitive skills at a much different pace than children without the condition. Everyone on the caregiving team needs to work together to provide the best outcome for the child — physically and socially.
3. Be present during therapy sessions
The main objective of occupational and speech therapy is educating the parents on how to best communicate with their children. Ask as many questions as they come to mind.
4. Keep a consistent routine
Children with Fragile X Syndrome can get easily overwhelmed by everyday scenarios, and they tend to resist change. This is due to the anxiety that’s an intrinsic part of their medical condition. In fact, changes in routine can cause them to feel fearful and trigger a fight-or-flight response, causing them to become aggressive, hide, or disobey your requests.
5. Use simple language
Using complex words or giving too many detailed directions can cause a child with FXS to become overstimulated and frustrated. By the same token, using short, predictable phrases will make it easier for the child to understand. Stay focused on the present moment instead of talking to them about a future event.
6. Pay attention to their body language
Children with Fragile X Syndrome often have problems talking — especially if they’re feeling social anxiety. Pay close attention to their body language. Signs that they are becoming overwhelmed include flushing, covering their ears, or trying to hide. Keep a list of triggers so you can recognize them and either prevent them or help them calm down.
7. Teach them the 5-point scale
This scale was developed to assist children in the autism spectrum in communicating their emotions. By using the fingers of one hand, a child with FXS can communicate whether they feel relaxed (by holding up their index finger), ok (by holding up two fingers), nervous (three fingers), angry (four fingers), or about to explode (five fingers).
8. Establish calming techniques
Since children with Fragile X Syndrome are prone to overstimulation, knowing what calms them is essential. This can be done by playing their favorite music with noise-canceling headphones, breathing exercises, or playing with fidget toys or Kinetic Sand.
9. Encourage them to do things they love
Children with FXS tend to have a good sense of humor and a friendly disposition. Focusing on doing activities they enjoy will help them shift their focus from their social anxiety. Play their favorite songs and watch their favorite movies with them, teach them visual cues with pictures, and teach them how to use a computer and play games.
10. Get support
Fragile X Syndrome affects both the child as well as the parents and immediate family. Having a support group allows you to meet people who’ve been dealing with exactly what you’re going through — and at different ages and stages of their child’s life. Consult with as many people as possible who understand the condition and who can give you insight into how to manage it.
Contact Care Options for Kids for Fragile X Home Care Assistance
It can be hard to balance your time between work, home, and caring for a child who has Fragile X syndrome. You can feel helpless and want to spend every minute of your day with your child. Home health care providers offer the support you or your loved one needs.