“Does It Get Easier” —Chelsi

Does living with CTD ever get any easier? When the burst of behaviors starts and you feel like you lost control how do you handle it? When your stresses are elevated what do you do?

It seems to me that we should be able to answer these easily. But when you stop and really think about it, they are more complexed that anyone could imagine unless you are actively living through it. This has been something that has popped up recently in my mind and that I have had to really ponder about. Life is hard as is but adding a developmentally delayed child to the mix for me seems to elevate the problems in a way. Do not get me wrong, if I had a chance to turn back time, I would not change my circumstances or the life I currently have. I feel like I was put in this place for a reason and I would not be finding my independency without it. Some days are the best days ever and then others are the complete opposite. I feel like I often forget how far we have come that when the outbursts occur or the frustrations and stimming happen, it causes a lot of doubt and difficulties for me to process. I really must steady my mind, take a deep breath, and remind myself that it is out of his control. We are often so focused on the progress that I sometimes forget that there is still a diagnosis underneath it all that come out with a vengeance at the drop of a pen or the snap of a finger.

When Caiden has behavior outbursts it is difficult for me. Like I know he can’t control himself but it causes so much frustration in myself and fear that it is hard to look past the loss of control and see the bigger picture. As I write this and self-reflect on an incident that happened, I wonder what his little body had to endure. How do you handle an incident when our kiddos have the strength of their typical age but the behavior of someone much younger? The answer should be easy but it can vary from kiddo to kiddo. For me it often requires a lot of grace, a lot of tears, and a lot of pain. Oftentimes I can redirect it and try to find a common ground of doing an activity together but on the other hand, it is not always successful and I feel like I am getting beaten to death. I know his body can’t control it from happening but what do we do in the situations where the behavior becomes more escalated that what we know how to help with. Walking away from them doesn’t always help because they will follow you. Closing a door to their room to decompress doesn’t always help because they bang on the door or try to open it. Letting them release their anger outside is not always an option because they will not stay out there long enough to feel better. For me, I have tried all of these and even then, they don’t always work. After all these attempts, the only thing that seems to work is to actually show emotion into what is happening and cry. My body and heart aches to find a way to help him through these tough situations but there is only so much we can do when we don’t fully understand.

Stress is another topic just in itself. Life knows how to throw curveballs that we must work through but how do we do this on top of being superheroes for our kids who needs extra love, affection, and attention from the outside world that we live in. It is difficult for me to find the right mixture of balancing the two together. There have been many times that I feel like the only way is to just throw in the towel. As much as this goes through my mind during the difficult aspects of this disease even through all the progress and growth, I wouldn’t ever do it. I have so much Joy in the growth and achievements that I am able to watch day to day that I will not let the disease hold me from being the best I can be for my child and what causes me to give up. This journey is such a rollercoaster that I try to cherish all the ups instead of focusing on all the downs. No matter how hard my body and heart aches when the behaviors take a toll, I wouldn’t change it for the world. Personally, the only way for me to get through the stress of CTD and LIFE is to just write.

All thoughts and ideas expressed in the Creatine Community Blog represent the individual blog contributor’s opinions and not those of the Association for Creatine Deficiencies. The ideas expessed in the Creatine Community Blog, and any other locations on the creatineinfo.org website, should never be construed as medical advice, even if the information relates to the contributor’s actual health care experiences. Individuals should always follow the instructions of their physician and make no changes to their care unless instructed to do so by their physician.