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

A VERY MERRY CHRISTMAS

and

A HAPPY NEW ATTITUDE

in the

NEW YEAR!

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

Check out my recommended reading list below the menu.

I have a Facebook page called Love Button Worthy! It features photos, blogs, quotes, and other content full of positivity and inspiration. Please like the page if it suits you and don’t forget to invite your friends to like it, too.  

Be as smart as me by reading these. LOL!  I hope this blog helps you to create a more peaceful life. Keep in touch by the following methods: Use the links under the archive menu to subscribe or follow by e-mail. Help me get this message out by sharing it with your friends on social media! If you enjoyed it and were helped by it, they will, too! Comment by using the comment link below or write to me with your comments and questions at mindchange4all@gmail.com  I look forward to hearing from you!

  

Giving Thanks

            November is the month when many people are focused on the things we are thankful for. Some things come easily to mind; things like family, friends, daily comforts, and little or large luxuries. Recently, though, something touched my heart that I was not expecting at all. It is something I would not have recognized as a gift a few years ago. I know that human beings are all connected in ways that we cannot always see, but sometimes we get to see that connection and how it impacts our lives in profound ways. Seeing this connection is an extraordinary gift. This Thanksgiving, I give thanks to my friends, my community, and to Facebook for this gift.

            In the past couple of weeks, I have been thinking about this Thanksgiving post and what I should write about. I knew I did not want it to be about everyday things even though everyday things make up a big portion of our lives. I wanted to write about something that bonds parents of special people or that shows parents how gratitude can bring more abundance and joy into our lives. But, I could not think of what to say or how to say it. Then the simplest thing happened. I was on Facebook reading about what all my friends are up to and I read a post of anguish from one of my friends. She and her husband had written posts similar to this lately and our friends have been trying to support them through a difficult time as they place their adult son into a group home. For the past couple of months, they have kept us updated through their transition and we have been allowed to share in their trepidation, excitement, worry, and relief. Recently, I began to notice a little more fear and worry and self-doubt in both of their posts about this transition. Their son has spent some time at his new home on weekends and now they are wondering if they should let this next stay be for the weekend or for good. At first, I was perplexed, thinking their doubt was a matter of the holidays coming up, but then I realized it is the time that any parent would dread. It is the time of his actual moving out of their family home. My heart broke for them. 

            I read my friend's words of how she was sad for her son that he would be leaving his old friends and her confusion and wonder of his agitation. Was he agitated because he knew it was his last day with his friends, or something else? I read her words of sorrow about him not being in their home on a daily basis and I realized she and her husband were giving me an incredible gift; the gift of sharing these experiences with me and all of their other Facebook friends. The thing they are doing now is the thing I will have to do someday and it is the thing I dread most in this world. Their ability to share this with us and be vulnerable with us is incredible. Most people would keep it to themselves and suffer in silence; never giving anyone else a chance to see what this is going to be like. I have imagined what it would be like, but through my friends, I can see it. After reading her post I thought about typical parents whose kids are moving out and starting a life of their own. It is so different from what parents of people with special needs go through. Typical parents get to watch their children grow and thrive in college or a job and a place of their own, but we get to worry about things most people can’t imagine. If we have more than one child we might be lucky enough to get to experience both situations. 

            Our lives with our children start out with a feeling of never ending parenthood. We can’t imagine what it will be like taking care of this person when they become an adult, having to do many of the things parents of young children do and someday get to stop doing, but we know we will have to do them without end. It’s not something we look forward to. Then a day comes when it’s not so strange. Things are moving along nicely for a while because we have adapted to this life. We are used to it now, and we can’t imagine it being any different. It becomes part of who we are. We daydream about a different life, but we never really think it will happen. Suddenly, there's an available position in a group home. There is a multitude of emotions; fear, excitement, relief, worry, anxiety, and more fear. You visit the home and meet the people. You ask a million questions. Everyone seems nice, the place looks comfy and nice, and there’s some relief and maybe just a bit of excitement. Then the worry and fear come back. You have an outing with the group. It goes well, your child seems to enjoy himself and be comfortable with everyone. The relief and excitement pay you another visit. Eventually, the worry and fear return. Your child stays at his new home for a weekend. You’re a bundle of nerves. You don’t know what to do with yourself. You plan a date night and wonder if you will enjoy it. It’s not so bad, maybe even a little fun, but all you can think about is your child.

How is he doing?

What is he doing?

Is he eating okay?

Is he wondering why he is there and you are not?

Is he having a good time?

Did his bedtime routine go smoothly?

Does he think we abandoned him?

            Eventually, the day comes when it’s time to take him to his new home knowing that it is not just for the weekend, but for good. You have done all your homework on this place and the people there. Now it’s time to let go and trust others to care for this person who has been almost your whole world for 25 years. The thought of him not sleeping right down the hall mixed with the silence in the house where once there were vocal noises coming from his room is heartbreaking. That heartbreak is entwined with some guilty relief because you know that no longer dealing with all the outbursts, the daily tasks of caring for him, and having to second guess what he wants and needs are giving you a sense of freedom you thought you would never have. It doesn’t feel right to want that freedom, but you can’t help it. Actually, my friends never actually posted about the freedom they might feel, but it is how I imagine I would feel. Even now, with no present plans of placing my son in a group home, I imagine it. Along with that daydream, I imagine what it would be like for my son. I think about all the ways his life might actually be better if he lived someplace else and I feel selfish for keeping him here. I don’t want to experience the pain of not having him here.

            The gift my friends have given me, in sharing their vulnerability, is the ability to see what it is going to be like for me someday. Not only that but also to see that it is not as bad as I had imagined it. When I thought of it before, it was mostly negative things that came to my mind; all the bad feelings and the bad possibilities of things going wrong. They have shown me that it is hard, but not impossible and that it is sad, but there are good things, too. Their vulnerability is my vulnerability and that is what connects us, human being to human being. Words cannot express how grateful I am to these friends! 

            Through sharing their experience on Facebook, they have opened my eyes even wider to a need in my city and county. It is the need for more group homes for people with disabilities. Their son has had to move to a city far enough away that he can’t continue all of the activities here, like his day program, Northlands Association for Special Recreation (NASR) activities, and Special Olympics programs with friends he has grown up with. I don’t want my son to have to give up all of that when I can no longer care for him myself. I don’t know the first thing about how to do it, but this gives me the desire to learn about starting a group home with other families. I have been wondering how it is done for many years and this has made me want to take the time to find out. It scares the heck out of me, but they say do what scares you and your life will become better than you thought it could ever be! I have a quote taped to my computer:

“Tell me, what is it you plan to do with your one, wild and precious life?”

~Mary Oliver

Maybe opening a home in my town will be one thing I, and hopefully my friends, end up doing, God willing.

            I cannot end this post without also sharing my gratitude for all of my community of special needs parent friends, NASR staff friends, school teacher friends, and paraprofessional friends. Each one of these friends offers something unique to our friendship. Some of them are funny and give me some great laughs, others share their teaching knowledge, some of them are supportive on days when I am just plain crazy - the good kind of crazy and the bad kind of crazy – many of them are all of the above, and they all love my son, just as I love their children. There are people I have known since my son entered school at age 3 but have never really gotten to know well until NASR came to the Belvidere Park District. NASR has given my son the opportunity to socialize and do new and exciting things, but it has also given me the opportunity to meet new people and to get to know others even better than I did before. NASR gives us connection through shared experiences and we form bonds because we know that our joy at these events has come after many trials and difficulties. Each of us has watched our children struggle and together we not only cheer for each child, we cheer for each family as we make it through another year, another month, even another day.

            Facebook has taken this connection to another level. It has made us much more interactive than we would have been if we were to only see each other at NASR events.

These connections, through NASR and Facebook, are gifts that I will cherish for all the years of my life. My world feels bigger now. Facebook has reconnected me with people from my childhood, as well; family and friends that now live in other states. It has given me the ability to reestablish friendships I made as a child and shown me what my life was missing without these cherished family members and friends. I have connected with former classmates and formed friendships though we were only acquaintances before. What’s more, I have met new people on Facebook that I may never get to see in person. I connect with these new friends spiritually. They share wonderful insights which help me reach deeper into my soul, helping me stay connected to Love.

            Yes, we are becoming a digital society with many drawbacks, but it is not all bad. Our ability to connect and to see these magical connections through digital means is a true gift. If not for this digital world I would be sitting at home with my son and my husband, I would see some of these friends at NASR events, and I would have interactions with my family members, but I would not be a witness to my friend’s vulnerabilities and joys. We would not have this extraordinary ability to share our hopes and dreams, or our worries and heartaches because doing that face to face is sometimes too difficult. This digital world allows us a level of vulnerability that is easier to share and easier to receive. It allows me to share this blog with you. I am immensely grateful for it.

            On Thanksgiving, take a moment to think about and give thanks for all the people you are connected with, recognizing the gifts they bring to your life. Happy Thanksgiving, My Friends!

Check out my recommended reading list below the menu.

I have a Facebook page called Love Button Worthy! It features photos, blogs, quotes, and other content full of positivity and inspiration. Click here to check it out. Please like the page if it suits you and don’t forget to invite your friends to like it, too.  

 Enhance your brain power by reading these. I hope this blog helps you to create a more peaceful life. Keep in touch by the following methods: Use the links under the archive menu to subscribe or follow by e-mail. Help me get this message out by sharing it with your friends on social media! If you enjoyed it and were helped by it, they will, too! Comment by using the comment link below or write to me with your comments and questions at mindchange4all@gmail.com  I look forward to hearing from you!