It finally happened. I knew it was just a matter of time, maybe one day in the future, but not now, not today anyway…But today, specifically this morning, things changed… After almost 18 years of being able to manage Brian’s anxiety ( and him) during a doctor’s physical exam, he got the upper hand. Even with the pediatrician’s assistance, it was still impossible to go anywhere near Brian’s nose or throat-a quick peek into each ear was all that the doctor could get. His loud verbal protests, crying, and quick reflexes to avoid physical contact at any cost were powerful, surprising, and heartbreaking. I had always thought and hoped that maybe with time and maturity, Brian would finally, albeit grudgingly, accept a doctor’s exam. I realized today that nothing has really changed over the years; Brian still hates physician exams just as much today as he did when he was little, but of course he was much smaller back then and much easier to manage. Now, Brian is 140 lbs of strong steel and is officially as strong as I am after today’s episode in the doctor’s office. This scares me half to death, especially as I get older, and as he continues to get stronger..
Doctor ceased her exam all together and made her recommendations based on observation and anecdotal information from me. At least she knows Brian’s medical history so well and always listens carefully to what I have to say. She is compassionate and kind to Brian, but in a few years he will age out of her pediatric practice and will need to move on to an adult physician. I shudder to even remotely consider this thought, and come back to the here and now, and how to best manage one medical appointment at a time… At least there is no outward signs of infection or fever. Doctor was very wise to give me a prescription for antibiotics, just in case things go south quickly, this way Brian doesn’t have to return to her office for a follow up visit. I breathed a sigh of relief and Brian made a beeline for the exit like he always does, once the “torture” was finally over.
During the drive home, I was cursing autism and sensory integration disorder for making my son’s life very unmanageable during a basic physical exam. Just like the old days, I continue to wrack my brain to determine if I have possibly missed ANYTHING that would remotely make the experience a little better. Like many other special needs families, we have tried it all: behavior modifications, rewards, repetition, time, a positive attitude, and hope that everything will ultimately be OK. While these strategies certainly do work often, I have concluded that there will always be some scenarios with our kids where nothing is going to make a difference, but acceptance of the situation for what it is, period. That’s really tough… I struggle with this truth big time as Brian’s Mom and his advocate. I am a problem solver by nature, so when there is no solution to an ongoing problem, that is extremely frustrating for me. I have to remind myself that there are multiple fish to fry with Brian and to move on to where I can help my son and change an outcome for the better instead of obsessing about what I really can’t change. You just try to get through whatever it is as best as you can. Not having control over a situation that your child needs help with is the worst feeling for a parent. We want to make things better for our kids when they are struggling and you feel so helpless when you can’t do that. Today was definitely one of those days..
I think what especially frightens me is how strong Brian has really become over this past year. Suddenly, he seems to have bulked up more, and has exerted more strength and endurance than previously. These are the reasons why I try to be physically active, eat well most of the time, etc, in order to be a step ahead of my son. I know deep down that one day I will no longer have the physical strength to help Brian, but I hope and pray that I remain healthy for a long time to come, or at least until we have figured out a transition plan for trusted others to eventually take over those areas of care when Jim and I no longer can.. This is why we have begun our quest and research on Brian’s next phase of life, as a young disabled adult out of special education within 4 years.
It may appear that we have all the time in the world to figure things out, but the reality is, Brian will be done with his education before we know it, so for us, potential planning and exploring has already begun. A major part of this exploration includes who will assist us in caring for Brian as we get older and are no longer able to help as much or at all, along with what he will actually be up to once his formal education is actually over with. What a scary and uncertain time this next chapter is! It is not for the faint hearted, that is for sure, with so many “what if’s?” and unknowns… Contemplating all the potential scenarios is enough to drive yourself crazy, and believe me, I still do that! And we haven’t even completed the legal guardianship process or started social security yet- other very stressful, but necessary components of our children’s journey. The list goes on and on.. We will always need Herculean strength and courage to get through each and every special challenge thrown in our direction until our mission on this earth with our children has been accomplished. It’s a huge assignment for sure! Of course, I wish so much wasn’t expected of us and our kids, life would certainly be so much easier for all concerned..
Yet, I do believe that somehow, someway, everything will eventually fall into place for Brian as it should, even if I don’t like the timing of events , the outcome, and/ or we have to wait longer for answers than we think we should.. My faith and collective life experiences tell me there is much to be hopeful about…God’s perfect timing is often not ours for a reason… He knows what is best for Brian and just asks us to be open to His will and to trust Him. Jim and I have ultimately done these things so many times in the past, when our own attempts were often futile. Ultimately, all things will work together for Brian’s good; they have all of his life so far. There is no reason not to think that this will continue and I chose to believe that, even if I don’t always feel certain.
A good friend once told me that feelings are not facts, rather, they are simply fleeting emotions and an important expression of our humanness, but nothing more. I will take that on faith and continue forward, despite the fear and uncertainty of the future, especially on days like today when despair threatens to engulf me. Fear and Sorrow will be periodic companions on the special needs journey. Unfortunately , there is no way to avoid their company, but they are not permanent guests, even though they would very much like to be… Instead, I try to take Fear and Sorrow at face value, then move on, because inevitably we must for our kids sake and ourselves. I actually appreciate Joy and Peace much more as a result of these inevitable struggles. I may not know what the future holds, but I know who ultimately holds my future, as well as Brian’s, and THAT makes all the difference.❤️❤️❤️❤️
Until next time, thanks for reading! 😊👍🏻