Written by Brynne Burgess
Being a parent or caregiver of a child under 6, with special needs, can be difficult around the Holidays. You will be gathering with family, extended family and friends who may be meeting your child for the first time! I can feel my blood pressure start to rise a bit when remembering some of our experiences with our son Wesley (now 6, diagnosis Joubert Syndrome).
You will want to plan ahead and anticipate difficulties or pinch points. How many people will be there? What other children will be there? Will I have a spot to feed my child? Is there a quiet space? How do I explain our diagnosis (or lack thereof!). Try not to put too much stress on the situation. Your child can feel that stress and it can make them more sensitive to this new experience.
Here are some things that I found helped:
For your child:
- don’t force them to interact with other children or adults
- make sure you know a quiet spot where they (and you) can regroup when needed
- feed them before you go, or bring a snack you know they will eat. If they cannot eat the food provided (feeding issues, texture sensitivity) you will be glad you don’t have a “hangry” child on your hands
- make yourself available to them. Your child needs to feel the security of you being there when they need a hug, or to get away from other children
- Have your elevator speech perfected! There will always be someone without tact saying, “what’s wrong with your child”. If you have an easy 2 sentence explanation, you will be less likely to overreact or be hurt
- In addition to the previous point, be ready to be offended. Also be prepared to hear about a friend of a friend of a friend who has a child with the same issues. They aren’t actually trying to offend you, they may be just trying to make conversation and let you know (in a roundabout way) that you aren’t alone.
- You will feel sad. Being a special needs parent is very rewarding, but the melancholy of seeing a “typical” child can be a bit daunting, especially early-on in your journey. I remember seeing typical children doing very age-appropriate things and was moved to tears in frustration (and jealousy). This will pass! Don’t let it ruin your Holiday
Remember to laugh and try to enjoy the moment! Your actions and words form your child’s internal dialogue.
Brynne is a parent in the Windsor, Ontario region.