The holiday season can be a particularly bitter-sweet time of year for families with special needs. Most of us grew up enjoying the time of year with its gatherings, and traditions, and pageantry. We have very strongly conditioned ideas about what things should look like.
That narrative doesn't usually fit into the special needs world. Tyler does not have the same perception of those important tokens of our perfect holiday imagery. This is where the clash originates between imagery and reality. I felt like I owed it to Tyler to share that holiday joy the way I knew it to be. Actually I felt the responsibility to make sure Tyler experienced more tradition and joy than I had experienced before. After all, isn't my job as a parent to give my child more love and security than I had ever known? I want to be the model for which my children learn how to be spouses and parents.
However, reality has it's own plan, and in many ways it doesn't pay any mind to those simple ideals. Rather it demands compromise and understanding. It requires us to look through the eyes of that special person and rearrange what is really important. This is often a sad undertaking. Its hard to let go of how we want things to be.
As a youngster Tyler seemed to enjoy Christmas. We have old video footage of him ripping into gifts or screaming gleefully at a new toy. One such time was when Santa brought him a ball pit and he ran straight for it and lunged in amid squeals of joy. But as we have learned so often happens with autism, he became less interested in new things as he became older. Gifts would often remain under the tree unopened for a week because he had no interest or would become angry when presented to him. Often the changes in weather and routine would cause him to become more surly and difficult to manage. Trust me when I say, it is a sobering reality when you have to open your child's presents yourself before taking the tree down.
Those with loved ones with special needs likely know the feeling of WANTING to look forward to the holidays but suddenly thinking about the difficulties it brings with it. To you I would like to offer this advice from someone who has been through good ones and bad ones:
B-A-L-A-N-C-E. Tradition, gatherings, and pageantry have their place and should never be abandoned. They are extremely important to us. But we have to see them through the eyes of our special loved one as well. Find as many ways as you can to integrate BOTH into your lives. Evaluate what works during your normal days and incorporate that into your holiday. Tyler did not do well at other's homes for gatherings but was well managed at home, so we would have holiday parties at home where we created activities and foods that became tradition. Tyler liked car rides so every year we drove the neighborhood looking at lights with some friends. If you can manage to have a respite evening with your spouse, find a holiday meal somewhere and spend one evening relaxing. Find new ways to decorate that are festive but do not threaten the sensory limitations of your special person. Tyler didn't like to open gifts so we began to buy him one special thing to open. We had to let go of that feeling of "if I don't buy him 10 great things to open I'm a bad parent".
What is important about this holiday, and every holiday, is that there is love. Love is the greatest gift we have been given and the greatest gift we can give to others. If we can be together, and we can love each other as a family in our own special ways, we have gifts that are so great that no wrapping is necessary.
Be well and God bless. Tom
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