You know what I am talking about. Any parent raising a special needs child knows about the setbacks. The kick in the stomach, racing heart, internal restlessness, sleepless nights re-evaluating and reassessing the situation until you can’t think straight. That fear that grips you and makes you doubt yourself as a parent, yup, welcome to special needs parenting setbacks.
If there is one thing I can tell you with absolute confidence it is this, there will be setbacks, many setbacks. There will be those days that out of no where you are struck with the enormity of it all, the days that you just break down and need a good cry.
I remember the days that I measured progress and setbacks in hours. Days that drained me both mentally and physically. With time and with my childs acquirement of calming and coping skills the hours turned into weeks then turned into months and dare I say, with fingers crossed and pajamas inside out , now years. I can catch my breath, I can go to the store without a knot in my stomach and a cell phone on loud clenched in my hands. Its been a long road of two steps forward and one step back. Smooth sailing you are thinking, not quite, the fear and insecurity I believe will say with me for many years to come.
The panic and constant state of anxiety parents of special needs children experience almost become a part of you. It consumes you. The nature of the beast becomes embedded in our brains and we know that with so many variables to triggers that we can never completely let our guard down. Many parents become proficient at being proactive, walking on eggshells and creating a sensory friendly world that is foreign to others. We are militant in our preparedness to avoid that dreaded meltdown and disregulation that once started can set off a chain reaction that can last hours or even days. Studies have shown that special needs parents have cortisol levels equal to or higher than war veterans. We are warriors.
With time, education and parenting classes or webinars we earn our degrees from the University of “Living It” magna cum laude. We become fluent in neurobiological definitions and the intricate workings of the pathways of the brain and neurotransmitters yet the diversity and individuality of each of our children make us vulnerable. It is that vulnerability that catches us off guard and sets us back.
Given the fact that I have been to hell and back I feel I can speak to this with some conviction. My best advice to you is this….. It happens…..It will pass……. You will get through this – Do not panic.
Waxing and Waning are part and parcel of neurobiological disorders, autism and mental illness. These periods of exacerbation can be very predicable and often dreaded. Some variables are the change of season, change of time zone, viral or bacterial infections, allergies, periods of social or academic stress and for some the unstructured times of school breaks. Some of the exacerbations seem to come out of the blue. Those are the ones that really knock us for a loop. It is the randomness and unpredictability that has us on constant edge. It is the fear that the regression will remain and our child – our families – our lives will fall back into chaos.
I write about digging out of the trenches, learning to survive the journey and pulling yourself and your family out of the pits that suck you in, well, every once in a while you slip back into one. I think the most important thing for parents to start to do once they get their bearings is to not panic. When these times of disregulation or rise in symptoms occur our first reaction is to panic, it is a knee jerk reaction. We often feel that everything we have done was useless. We drive ourselves crazy trying to find the cause or trigger and immediately think we need to make changes. I can tell you that is not always true. Some things need to run its course, we cannot change them. We can be there, we can comfort but we cannot change them. I think that during these times we should take the advice of the flight attendants and put our oxygen masks on first, calm ourselves and understand that the tools and the skills we have spent years giving these kids do not dissipate into thin air. They will use them but it takes time.
I began to look at those setbacks as a time to have a reality check. It was a time after some smooth sailing to remember that my child has a disability, that life is hard for her, that the unpredictability of her life was even more terrifying for her than for me. Instead of contemplating drastic measures I gave it time to settle, I gave her time to settle and I dropped expectations until the storm passed. Adjustments were often made but not demands. These are the times to be kind to your child and to yourself. These are the times to do whatever it is that helps you maintain calm and clear thinking. Over the years I began to see the pattern, I awaited the pattern and I accepted it. I’m not saying it wasn’t hard, it was devastating and many many times I felt I couldn’t get through it, but I did, and so will you.
The setbacks are the reason that we continue to teach calming skills and coping tools when they are in remission or stable. The setbacks are why it is vital to continue therapies and strategies in times of calm. It is during those times that these kids absorb the knowledge of the abilities that will get them through the setbacks. As these kids get older ,often times they begin to sense the oncoming exacerbation and can participate in being proactive to cut them off and communicate their tolerance level. Parents and educators need to listen and observe to try to make accommodations before these kids fall into their abyss. It’s easier to climb out of a ditch than a gorge.
I wrote “Try”… Try to make accommodations before these kids fall into their abyss. Sometimes all we can do is try and sometimes trying just doesn’t work. Sometimes we are just going to have to go through the pain of the setbacks and try to breathe. Unfortunately there are times that our best will be to simply function, to take those two steps forward and one step back and know that this too shall pass and with each step their are gains.
As we waited for the storm to pass we learned how to dance in the rain – Vivian Greene