Safety Precautions
Safety Precautions
By Antonie Kline, M.D., CdLS Foundation Medical Director
Safety for our children is one of the most important issues for every parent, no matter their age or abilities. Picking up tiny objects, crossing the street, talking to a stranger—all can present a danger depending on age. For parents of children with disabilities, even safety within the home can become a concern. Furthermore, children with Cornelia de Lange syndrome can have additional habits that put them in harm’s way. Below are some suggestions that could help avoid these potential dangers, and are meant to educate and advise rather than frighten.
For infants with CdLS, it is very important to have a special hospital fitting for cars seat because of their smaller than average size. Padding might be needed to make certain that the infant fits appropriately in the car seat in case of an accident.
For toddlers with CdLS, typical precautions hold true, such as not leaving tiny objects around that could be swallowed and lead to choking. Toddlers with CdLS can be even busier than typical children, so be extra cautious! Cover plug openings, latch cupboards containing cleaning supplies and glass, and ensure that pet food is stored in a closed compartment.
For school-aged children with CdLS, always be cautious crossing the road. They can be very fast and quickly dash away. They may try to run away from home, so having secure latches on outside doors can be critical. If this is an issue, consider a MedAlert or similar bracelet in case the child gets lost. There can also be a risk for safety issues at school. This should be addressed with a classroom teacher or aide, and also discussed at your annual I.E.P. meetings.
Some children, adolescents and young adults with CdLS need much less sleep than compared to other family members. Keeping children in their own rooms is important, but some families have a bedroom door that can be latched from the outside or a divided door that can be opened from the top, but remains latched at the bottom for safety. Some parents also have special beds that are difficult to climb out of or mattresses very low to the floor. Additionally, if self-injury is present, make sure fingernails are kept short and try to divert attention by providing toys to squeeze, bite or gnaw.
Finally, older children, particularly females, could find themselves in vulnerable situations. Most schools, workshops and workplaces for individuals with disabilities are safe, but not always. It is important to be comfortable with personnel and confirm impressions with other parents and coworkers. For young women who have more mild features of CdLS, unsupervised situations could lead to sexual advances or assault. Providing education about this and considering birth control are important conversations to address.
Your healthcare provider can always help advise and assist in any of these situations, and we at the Foundation are available for any questions or concerns.
