Supports for Parents of Children with Neurodevelopmental Disorders

support for parents

Supports for Parents of Children with Neurodevelopmental Disorders: Holiday Edition

Rachel E. Bezzina, RSW

The holidays can be a great time when family and friends get together for good food and traditions. Yet, this time of year can be particularly difficult for parents caring for children and youth with a neurodevelopmental disorder (ND). NDs affect the nervous system during its development, which causes changes to the way the brain would otherwise work. Some of the most common NDs are Autism Spectrum Disorder, Attention Deficit Hyperactivity Disorder, and Fetal Alcohol Spectrum Disorder. As a result, challenges can be seen in physical, emotional, behavioural, sensory, and learning abilities. The pressure to participate in the festivities as well as your own desire for things to run smoothly (so that you too can enjoy the holidays) can be stressful and daunting!

Below is a list of tips to help you and your family this holiday season.

Be proactive

Children and youth with NDs thrive best when they have routines and schedules to follow. Equally important, is the time they need to process new information. So, parents need to be as proactive as possible! This means, scheduling, planning, and discussing the holidays with your child…before the holidays. Arrange a time to sit down with your child/youth and a calendar to map out your routine and plans for the holidays. It’s good to include your child in the process so they can have a say in what they would like (or wouldn’t like) to participate in. Having a visual representation (the calendar) of your schedule will not only help your child process ahead of time but also reduce anxiety since there will be less chance of uncertainties or surprises. If your child is not yet reading, try using stickers or drawing small pictures to represent your schedule on the calendar. When proactively planning your holidays, try to stick to routine as much as possible. Children and youth with a ND struggle with change. You will find that a proactive approach is helpful when paired with tips below.

Set realistic expectations & prioritize traditions

Managing expectations and setting priorities ties-in with proactive planning. When you sit-down to figure out your holiday schedule, make it realistic! You probably know your child better than anyone, so make sure you plan for success (or close to it). If you know your child struggles with crowds, avoid them (keep reading for more advice on crowds). If your child has difficulty managing their emotions at family gatherings, consider shortening your stay and check-in with them frequently so you can provide support.

Prioritizing your traditions and holiday events and letting go of those that are not realistic for your child may be difficult for you but necessary for your child. If there are certain traditions that you cannot let go of, consider finding a friend or family member to stay with your child.

You will avoid disappointment if you plan carefully and go into situations with realistic expectations. It is important to remember that your child is not trying to be difficult, but is doing their best to adjust to stimuli and changes.

Avoid crowds and loud noises

Many children and youth with NDs are sensitive to stimuli. This could include crowds, loud noises, bright or flashing lights, images, colour, and certain foods. It’s no secret that the holidays give rise to ‘sensory-overload’ no matter where you go; whether that be the child’s school that is filled with handmade decorations and excited young children running around or the crowded grocery store that has unanticipated loudspeaker announcements…“MANAGER LINE ONE. MANAGER LINE ONE.” Or how about the holiday market that is bustling with busy shoppers, holiday music, different smells, and a store clerk ringing a bell to grab shoppers’ attention. I’m sure you get the point. Here are a few examples of ways to avoid the hustle and bustle of the holidays that could trigger your child:

  • Instead of going to the parade, watch it on TV;
  • Rather than visiting a busy holiday event, visit a local nursery (they usually have beautiful winter displays of decorated trees and poinsettias) OR drive around after dinner looking at all the homes with light displays (you could even bring some hot cocoa for the drive!);
  • Plan to have a family member or friend watch your child while you complete your holiday shopping or try doing your holiday shopping online;
  • And lastly, keep an eye out for sensory-friendly events and activities taking place in your community.

Take care of yourself

Parents and caregivers of children with special needs are at higher risk of experiencing social isolation and stress/anxiety than parents of typically developing children. Not only can the holidays be exceptionally stressful, but it can be difficult to find the time to take care of yourself and to de-stress. Ideally, the tips listed above will reduce how much stress you experience. But, as mentioned, setting realistic expectations is essential since it’s unlikely to experience a perfectly smooth and peaceful holiday.

When planning your holiday, be sure to schedule time for YOU; whether that means spending fifteen minutes each evening reading a book, taking a warm bath with some tea after the kids go to bed, or having coffee with a peer who understands your situation.

Studies have shown that speaking to a peer with similar lived experience is instrumental as it is not only validating to have a friend who understands your situation but also provides a sense of community. Moreover, peer relationships reduce social isolation, increase your feelings of self-worth, and are a great way to promote self-care! London Family Court Clinic offers a peer mentoring program for parents and caregivers of children with suspected or diagnosed neurodevelopmental disorders. To connect with a mentor before the holidays, please call or text 519-878-3273 or email rachel.bezzina@lfcc.on.ca.

The holidays may look a bit different and involve more planning for parents caring for children with a neurodevelopmental disorder. There may not be as much hustle and bustle, bells ringing, carols being sung, and stockings hung in a perfect row above chestnuts roasting on an open fire, but that doesn’t mean you cannot find new traditions that meet the needs of your family.

To get connected and share tips with peers contact Rachel Bezzina, social worker and clinical manager of Parent Connect at London Family Court Clinic (519-878-3273).