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Monica Pickard spent twenty years of her adult life as a child care provider. During that time, with the help of her husband, she raised her son who has been diagnosed with Autism and Developmental Delay. She learned to navigate a world that was new to her – the world of Special Needs. She now shares these experiences and the wisdom they taught her, with love and heartfelt compassion for the human condition.

Wednesday, December 17, 2014

Blue Christmas

            Elvis sang of a blue Christmas without his love, but for many parents of children with disabilities, Christmas can be a very blue holiday. The festivities themselves can serve as a reminder of how different our kids are from everyone else’s and remind us of the life we expected to have.
            As a little girl, my parents always took me and my sister to sit on Santa’s lap and get our picture taken. We have many photos of smiling faces with Santa. I always expected to have smiling photos of my child sitting on Santa’s lap, but when he was little he wanted nothing to do with that old man. He is screaming in his first Santa picture. I used to hate that picture because to me it symbolized what was wrong. Now, a screaming child Santa picture is all the rage! It was not all the rage 25 years ago. When I placed my son on Santa’s lap and he started screaming and trying to get away from him I was devastated inside. I wanted and expected a smiling face happy moment picture, not a screaming face traumatic stress picture. 
            When I was a little girl my sister and I could hardly sleep on Christmas Eve, just like most children. We would lay there in bed thinking about Santa, wondering if we would hear him and his reindeer this year, or if he would sneak in again this year without us hearing him. On Christmas morning, we would run into mom and dad’s room and get them up so we could open a huge pile of gifts. We could hardly wait to see what Santa brought us the night before! We would charge into the living room so excited to see what we got. We were never disappointed! It was so much fun being with our family and sharing the holiday. I expected that my holidays would be the same way with my children, only this time, my husband and I would be the ones giving the gifts and setting up Santa’s gift after our child was in bed on Christmas Eve. My son does not understand the concept of Santa bringing gifts all around the world and leaving something especially for him. He never had the exciting anticipation laying in his bed on Christmas Eve, or waking up excited on Christmas morning. To him, it is just another bedtime and just another morning. He gets excited when it is time to open his gifts. He loves all the decorations and getting together with our family, but he does not enjoy many of the things I did when I was a child; things like leaving cookies and milk for Santa, or asking a million questions about Santa and how he does it. You can’t help but feel let down and cheated when you don’t get to experience that with your child. It was very disappointing to me when he was young and there were times I really didn’t want to participate in Christmas, but I did it because of the things he did enjoy.
            Another tradition we had was going to my Aunt and Uncle’s house for dinner or them coming to our house. All the cousins could play together while our moms made dinner and our dads watched football and joked around together. This was never an issue for my son, however, many people with autism and other disabilities have sensory issues that make it difficult to be around a lot of people and noises. This can make it hard for families to get together during the holidays. Parents are sometimes isolated and alone because their child just can’t handle all the chaos that comes with family gatherings. If they do get together with family, it is stressful anticipating their child’s meltdown because sometimes you just don’t know what will trigger it. I’ve heard of many families who are not supported by extended family. There is judgment around the child’s behaviors and an unwillingness to accept that the child has a disability. This makes the holidays very lonely for people who want to spend time with extended family, but can’t handle being judged as bad parents. It is very sad and makes the holidays depressing when you expect your family to understand and to support you and your child, but they refuse.
            I’m sure there are families that enjoy a special Christmas at church, but cannot bring their child along, or make them understand the meaning of Christmas. They may feel a loss because their child cannot fathom their beliefs or know the love of Christ the way many people do. These are just a few of the things parents deal with at Christmas time when their child has a disability.
            I have learned over the years that expectation and resistance are what kills the mood of any holiday. It took me a long time to understand that. Leading up to each holiday and birthday I would lament about how I wished things were. It is okay to want something to be a certain way, but you won’t have peace until you accept reality. I was telling myself that it could not be fun if it didn’t go a certain way. I longed for what I expected before I had him. I dwelled on what it was not, rather than seeing it for what it was. My child enjoyed much of the holidays, but I was too inflexible to let myself enjoy what he enjoyed. All I could think about was how different it was from the way I expected it would be. What I have learned over many years is that you have to align yourself with reality and accept whatever comes. You can’t have expectations when you have a child with disabilities. Peace comes with acceptance; knowing you can’t change it, letting yourself feel the loss of the way you wanted it, and then putting yourself squarely in the present moment and enjoying whatever happens. Going with the flow of life has brought me contentment. So, he’s 26 years old now and still needs help opening his gifts. Who cares? It’s not earth shattering and it’s not going to ruin my day ever again! He likes Santa now and doesn’t mind getting his picture taken with him. Yes, he is too big to sit on Santa’s lap, but he can stand next to him and feel joy inside even if it does not show on his face. He shows it other ways. He is happy and that’s all that matters to me. 
            If you are experiencing a blue Christmas, please try to change the way you think about it. Your mental attitude has more to do with your blues than your circumstances. Before Christmas arrives, let yourself grieve for the life you don’t have. Doing this will open up a special space in your heart for acceptance and you can then be joyous for the new and unexpected moments that happen now. Changing your expectations – even dropping all expectations will go a long way to ensuring your holiday is peaceful and content. Look for the joy in your child and know that it doesn’t have to be a certain way for you both to be happy. Make new traditions if you must. Anticipate ahead of time any problems that may arise and have a plan ready to help your child cope. Make whatever adjustments are needed in order to get the most out of your holiday. If your family is not supportive of you and your child and you plan to be with them anyway, plan what you will say to educate them about your child if a situation arises that they do not understand or accept. Do it in a loving way so as not to put them on the defensive, but do it so that your relationship will move forward. Maybe even think about writing a letter to your family before the event, telling them how you feel and explaining things they may not understand. You just might be surprised at their reaction. It could be that they don’t even realize what they are doing. If it does not work out then you will know you tried and you will know it is their loss. Whatever happens, you get the pleasure of spending the holidays with your precious angel! Who could ask for more than that?
            If you are a young parent and you are struggling to enjoy your child’s youth because of a disability, I want you to know that you can’t ever get this time back. I’m sure you know this on a rational level and you may even think you don’t want it back; you just want to move past it, but I can tell you from experience that you will wish you could go back and have a do-over. I would have  never thought I would want that time in our lives back again, but I wish I could go back in time and redo our lives with an improved mindset. I don't want you to experience this regret. I will leave you with these truthful words from Country Music Singer, Trace Adkins:

You’re gonna miss this
You’re gonna want this back
You’re gonna wish these days
hadn’t gone by so fast
These are some good times
so take a good look around
You may not know it now
but you’re gonna miss this

May you all have
in the

Here’s a You Tube link to a live performance of You're Gonna Miss This. Get your tissues ready!

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