Parenting a Child With Fragile X Syndrome

Fragile X syndrome (FXS) or Martin-Bell syndrome is a genetic disorder affecting learning abilities. Parents can pass FXS to their children. It affects more boys compared to girls. The fragile X symptoms last for life. Children with FXS require lifelong care.

But what is fragile X syndrome really? How does it affect a child’s intellectual development?

Fragile X Syndrome – Causes and Symptoms

FXS causes development delays due to genetic anomalies in affected people. It can lead to behavioral problems, learning disabilities and social development delays. The FMR1 gene in the X chromosome can have a defect preventing it from making a specific protein that is required for proper nervous system functions. If the quantity of protein is not adequate for optimal nerve system functions then it can cause FXS.

Fragile X symptoms in toddlers can be delays in normal developmental milestones such as the ability to sit, talk and walk. Other fragile X symptoms include autism, social anxiety, stuttering, hyperactivity, impulsiveness, depression, seizures and difficulty sleeping. Children with FXS can have problems such as not being able to make eye contact with others or comprehend body language.

Treatment

There exists no fragile X syndrome treatment or cure to provide relief from the symptoms. The best thing you can do is help your child learn coping skills. You can opt for autism treatment if autism is one of the fragile X symptoms present in your child. Again, there is no cure for autism. This is why it is important for parents to find ways to help their kids.

Tips to Help Children with FXS

Here are some tips to help parents manage the health of kids with FXS.

Keep up-to-date with fragile X syndrome facts and research on possible treatments. Read everything you can about fragile X symptoms from medical journals and trusted health websites. Talk to your child’s doctor or a mental health professional to know more about the condition and how it affects your child.
To manage doctor visits or any kind of social events, it is a good idea to talk to your child beforehand about what to expect on these outings. Whenever possible avoid situations that can make your child uncomfortable. Choose a doctor who understands the unique needs of your child and treats her or him gently. The same applies to other professionals such as dentists, hairdressers, teachers etc.
You can use equipment pieces such as trampolines or swings to counter the hyperactivity in your child. Choose gentler lights around the house to keep your child with fragile X symptoms calm.
Choose exercises such as holding the ball in your palms if your child has the fragile X symptom of poor motor skills. You can teach your child to learn how to draw or write with regular practice.
Kids who can’t speak properly due to FXS can benefit from speech therapy. Development of language skills is a common fragile X symptom. You can take your child for regular speech classes to counter this problem.
Accept that you may need support in caring for a child with FXS. You and your partner need to work as a team to help your child with FXS cope well in life, along with taking care of your other children if any.
Join a support group of other parents who have kids with FXS. You can also participate in trusted online forums that focus on mental disorders.

There is truly no substitute to parental support, when it comes to helping children with FXS grow into healthy adults.

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