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coping with the holidays

We often have visions of sugar plum fairies and warm family gatherings for the holidays. Sometimes these dreams do come true, but often reality can fall short of our expectations. When we add a child who has a disability to this holiday picture, we may have some unexpected challenges. Holiday stress may come from many directions and may include grief over the loss of dreams for our child, stress added by family members who are dealing with their own grief, stress from a spouse who is handling things in a way that we don't understand, as well as the usual holiday hassle and bustle.

Before the birth of our child, we held dreams and hopes for that child. We didn't expect that the child might be "different" and that the future would hold a menagerie of therapists, surgeries, medications and doctors. As we deal with the loss of our vision for this child and seek to replace it with a new vision, we often will cycle through the grief process. This may include feelings of shock, anger, depression and finally acceptance. Depending on where you are with this cycle, you may or may not experience added stress and sadness during the holidays.

In addition to our own loss and sadness, our extended family members may be struggling with their feelings about our child. Different generations may view a child with a disability in a less than favorable light. The extended family is not there on a daily basis and may not be in the same place as far as accepting the disability. You may hear words of denial -- "There's nothing wrong with her."  Words of the "expert" -- "If you would just exercise his arm for 2 hours a day, he would use it more." Words of blame -- "I wonder if this happened because you worked during pregnancy" or "We've never had a child like that on our side of the family." You may also see avoidance of the child or overindulgence of the child. 

How do we deal with our own feelings and those of the extended family? A few suggestions may help you cope with the holidays.

  • Talk with your spouse and immediate family about your expectations for the holiday. What is really meaningful to you? What traditions to you wish to bring from your original family and what traditions can you create for your new family?

  • Talk with your spouse about how you will handle those relatives who may just send you off the deep end with their comments. Make a plan BEFORE they arrive. Maybe you will plan a couple of hours a day to escape to a friend's house to relax. Have a friend that you can phone to talk about your day. Maybe take a soak in the tub with a nice bubble bath at the end of the day. Writing in a journal or writing a letter (that won't be mailed) may help you deal with angry feelings that you would rather not
    express during this time.

  • If you have an open and close relationship with your extended family, talk with them about your loss. This can be a chance to gain a closer relationship and understanding of your situation. Realize that they may deal with their loss in a very different way and that there's no "right' way to grieve.

  • Help your relatives with gift choices by telling them about gifts that your child will enjoy. This makes it less likely that they're going to give your child a skateboard when he's having balance problems.

  • Don't overschedule during the holiday season. Build in rest time and quiet time for all family members. We're less stressed when we're rested. 

  • Don't be afraid to consult a therapist, counselor, or church leader for help in dealing with your feelings during this time. They may be able to help you with a holiday plan. 

  • If you know that your in-laws make you crazy after a few hours, then don't spend a week with them. If you don't have a choice, then consider staying
    in a hotel, so that you have a place to "escape". 

  • Write a letter to the child who didn't arrive - that child who wasn't born with a disability. Say goodbye to your dreams for that child. You won't begin to accept and create new dreams for your child who has a disability until you've let go of the old dreams. You'll feel some sadness and maybe even anger. Then write a letter to the child who did arrive. Talk about the special moments that you hold dear with this child. Dare to dream new dreams, whether big or small.

  • Be willing to change your expectations during the holidays. Flexibility will take you far and you'll feel more in control.  

  • Watch food and alcohol consumption. Get plenty of exercise, a great stress reducer. Go for a walk after lunch and take the family. Take the children to a park if time permits or even jog inside the house. Yes, the in-laws will think you've finally lost it, but a little laughter goes a long way.  Put on a fun dance video or some music and have the older family members teach the younger ones dances that they did when they were teenagers. 

  • Work on a family history album. Ask family members to tell you about their lives and have the children write it down, record it, or even make a video.  You'll treasure this in the future. Have the children make a big family tree on construction paper. People who are working on a project together have less time to make insensitive remarks. Plus, they will get to know your child for who they are and the disability will become a very minor part of the equation. 

  • Finally, be kind to yourself. It's not a perfect world or life and this isn't going to be a perfect holiday. Keep your original vision in mind, whether it's to get closer to your family, enjoy old or new traditions or just get through the month. 

Article written by Nancy Atwood

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The information contained in this Children's Hemiplegia and Stroke Association (CHASA) Web site is not a substitute for medical advice or treatment, and CHASA recommends consultation with your doctor or health care professional.