The Never Ending Roller Coaster
My least favorite and most feared ride at any carnival, amusement park, or theme park is the roller coaster. They are too fast, have too many peaks and valleys, and are filled with unexpected twists and turns. I also hate the way my stomach feels when I am diving at a sharp angle and then quickly propelled back up into the sky. I avoid them at all costs, however, ironically it is exactly how I would describe my life with Sydney and SMS.
The other day the boys and I found ourselves having another one of our deep conversations about Sydney and her special needs. Cole shared with us that he saw Sydney at school that day and when she approached him she suddenly threw herself on the floor and began to tantrum. He said that his class started laughing and that he was embarrassed. I could feel his sadness and pain and found myself struggling with just the right words to help him.
Once again I explained how Sydney has a difficult time regulating her emotions and when she gets too excited, happy, angry, or sad she can get overwhelmed and have a meltdown. But to an 8 year old who is concerned about what his friends are thinking, this explanation was just not adequate. I proceeded to tell my boys that they should explain to their friends that their sister has trouble expressing herself and gets easily frustrated when she does not feel understood. Cole said he would never be able to remember to say all of that in the heat of the moment and shared that he felt guilty because he laughed along with his friends.
Ben being the older brother tried to offer some brotherly advice and told Cole that he should just tell his friends that a bee just stung her and that led her to a meltdown. I could not help but laugh at that moment; in fact we all laughed which helped to lighten the mood. I told the boys that although that was a simple way to explain a very complicated situation, it was simply not the truth. It is important that we don’t feel the need to lie about Sydney to get through difficult situations. We then went on to talk about concrete yet truthful things they can say to their friends to help explain Sydney’s challenging behaviors and sudden outbursts.
The next day when Cole came home from school he told me that he saw Sydney again but this time she greeted him without any problem. It made me think about the unpredictability of Smith Magenis Syndrome and the anxiety it must be causing my boys. They really never know what to expect from their sister. Later that night I brought this concept up to them. Almost immediately Cole shared that the hardest part about Sydney is that you never know how she is going to respond. What he said was so true and it reminded me of when you ride a roller coaster for the first time.
Ben and Cole were intrigued by this metaphor and found it something that they could relate to. We went on to talk about roller coaster rides and we all agreed that sometimes being around Sydney makes you feel like you need to hold on for dear life, but when the dust settles, which it always does you can relax and enjoy her again. I particularly stressed to Cole that Sydney’s bad moments do pass and that they don’t last forever. Much like when you hit the highest peak of a roller coaster ride you always know you will come back down to a straight and flat path.
I told my boys that it is not easy living on a never ending roller coaster ride and that some days are easier than others. I admitted to them that I struggle with this too. I also shared that I feel anxious never knowing what is coming next or how long it is going to last. But I did assure them that I was confident that no matter how rough the road gets we always find ourselves back on the ground in one piece. Very much like a roller coaster ride, no matter how intense the ride feels it always comes to a safe stop.
Ben took it upon himself at that moment to confront me on my fear of roller coasters and said, “If you know it will always end mom then why are you so afraid to get on one?” Well he had me there. Tough to argue with him when I am trying to teach them to face their fears and have faith that no matter how bad it gets we will always land on our feet.
I made a promise to my boys that night that the next time we go to Disney World I would finally go on Space Mountain. To me there is nothing worse than a roller coaster in the dark. If you think about it, it is the perfect way to describe life with Sydney and SMS.
Thankfully we have no immediate plans to go to Disney World!