Raising a Child with Fragile X |
Posted: June 30, 2016 |
While parenting is often a rewarding experience, most people would not argue that it is a fairly challenging experience. The lack of sleep while the child is still a baby or toddler can be extremely exhausting. The stress of responsibility for another person’s safety, education, well-being, health and future can be overwhelming. This all seems pretty difficult, but what if we added one more challenge? What if your child had genetic condition that caused learning disabilities and cognitive impairment? What if your child had fragile X syndrome?
Fragile X syndrome (also known as FXS, Martin-Bell syndrome and Escalante’s syndrome) is an inherited intellectual disability that is most commonly caused by a mutation of the FMR1 gene where a segment in the DNA is multiplied. Fragile X syndrome causes more inherited intellectual disabilities in males than any other condition. Males are likely to be affected by this genetic condition approximately twice as much and as females. Although it is rarer occurrence, females an be affected and this should not deter exclusion of this condition when diagnosing a person.
Raising a child with fragile X would be a challenge indeed. Currently there is no permanent cure, however, there are resources out there to help you along such a parenting journey. Weighed blankets have been known to dramatically improve the lives those affected with sensory disorders. Weighted blankets are comforting blankets filled with Polly Pellets (the pellets that can be found in Beanie Babies). This added weight compresses onto a child to provide a soothing and relaxing feeling of comfort and peace.
More proactive treatments to help children progress are special education services, therapies and even medication. The specific conditions and impact of fragile X cases can vary greatly, so it is important to consult health professionals to correctly provide the proper therapy strategy and medication plans. Sensory Diets have also been known promote a balanced emotional and physical state throughout the day of the person affected. Over time, sensory diets will help change the nervous system of a child to sustain lasting results.
Raising a child with fragile X can certainly be scary, challenging and often a stressful ordeal. However, you don’t have to go through it alone. There are numerous resources available today in schools, medical professionals, dietitians, and support groups. The online communities available to learn, share stories and help each other are increasing and only becoming more and more helpful over time. Don’t wait! Check out FragileX.org to learn more about the support networks available and how to get involved today.
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