Christmas is on it's way, which creates a bittersweet time for the special needs parent. It’s easy to concentrate on what we cannot do, or what our child cannot understand during the holidays. We can tend to have this Norman Rockwell painting imagery of what we want Christmas to be for our family. It’s this unintended setting of expectations that can lead to our disappointment.
We tend to have this Norman Rockwell painting imagery of what we want Christmas to be for our family.
For our family, Christmas was made more complicated by Tyler's worsening behavior during the winter months, Nov 1 - Feb 28 were always his "dark period". Regardless of what we tried, he was extremely agitated and edgy during this time of the year. Christmas, with the added stimulation that he didn't really understand, seemed to just contribute to further behaviors and frustrations. I recall it being so bad one year that I had to stay upstairs with him while everyone celebrated the holidays downstairs. To this day Tyler often doesn't open his gifts for days or weeks after Christmas because he just doesn't WANT to.
I don't remember Rockwell painting a Christmas scene that looked like that.
We have to separate what we see as ideal versus what is ideal for Tyler.
So what does Tyler need for Christmas? What does he really want? As with so many subjects, we have had to separate what WE see as ideal, versus what is ideal for him.
He wants security in the arms of his family. He wants to feel comforted in a world that is scary to him, especially when it is cold outside, lights are blinking, and there is a dang tree inside of the house!
He wants his trusted people around him. He enjoys seeing loved ones, his church, and close friends who give him special gifts like smiles and hugs. These are gifts he fully understands.
He wants warm food, warm clothes, and a warm bed.
Stop and read those points again. When I wrote them, and read them again, I wondered who really understands the real gifts of the season and who doesn't! The greatest gifts for him are warmth, peace, love, and security. What a simple and profound statement.
Provide the gifts of security and love.
With all of this in mind, we have scaled back what WE believe Christmas should be for him, and worked to make sure he was getting what he really wanted. We don't shower him with material things or make him open a bunch of presents. Instead, we get him perhaps one or two things that will ensure his security and comfort. We make sure we, and his loved ones, see him around the holiday and tell him how very much we love him. And most importantly, we ensure that he always has a life where he is cared for and respected.
It's not a mystery when you really boil it down....it’s just providing the gift of security and love.
My Walk With Tyler is about my journey with my son, Tyler, and is intended to provide a voice to caregivers, especially those with disabled children. To be fair, I am not a therapist, or an expert on special needs, nor would I intend to pretend to be. My goal is to share all of the triumphs and heartbreaks that we have been through, especially during this transition into Tyler’s residential placement. Because there is no “manual” for caregivers to follow, we must help each other find the way. My hope is that through my advice, stories, and experiences that the reader can find nuggets to add to their own journey. To read more from Tom click here!