We gladly begin a fresh new year with the hope of healthier times ahead for all and things to look forward to! It will be a relief to finally put the coronavirus behind us with vaccinations and time, so that we can proceed with those routines and pursuits that have been on hold for so long. For those of us who have special children, though, there will inevitably be certain things that will remain exactly the same in 2021, just like in previous years. There will also be changes in our son or daughter’s development: this is a given whether a pandemic occurs or not, and is an annual occurrence that we can also count on. The acquisition of skills, (or decline in them), depends on a multitude of factors. While the learning spectrum for our children is quite broad and varied, the actual learning of skills is often done with lots of repetition and prompting for most children with autism. When you think about the number of tasks that you try to teach your special child from sunrise to sunset and consider the number of steps it takes to complete each one, it is quite daunting! It is also exhausting, repetitive, and never ending….
The last several months together at home have reminded me just how intense the learning process is for Brian and how I long for him to be back in school full time. Let’s be honest: as much as we love our kids, too much time together under these circumstances is so maddening! Our children want their routines back as much as we parents do! I am a former teacher, but I am also Brian’s Mom, and that is my primary role. I often learn alongside Brian and have an even deeper appreciation for the teachers, therapists, and volunteers for all that they do. I try my best to implement what I have learned from the professionals to help my son. I also pick and choose what I believe to be most relevant in his life and what he will need in the future. Brian’s actual remaining time in special education is short: he has a little over 4 years left and then he is done! It’s so hard to believe and the very thought scares me to death! In preparation for this major transition in the future, we focus on those basic skills that Brian will need to have as adult NOW, with the hopes that he will learn as many as possible, but with the understanding that Brian will ALWAYS need assistance with every one of these skills for the rest of his life.
Welcome to the Land of Perpetual Prompts! Every skill that Brian learns requires hand-over-hand assistance with simultaneous verbal prompting, for each step, with lots of repetition. Eventually, I am able to fade the physical prompting for some skills, but not for most. Brian’s poor fine motor abilities (due to his cognitive delays and low muscle tone as a result of Down syndrome) makes it very challenging for him. Add autism and a “teen tude” to the mix, and it’s quite a mountain to climb each time. Our kids run the risk of becoming “prompt dependent”, where they can rely on the verbal or physical prompt when it is no longer necessary, so there’s that… Sometimes, it can be hard to differentiate between the two. Sometimes, there are huge achievements to celebrate. Sometimes, there are skills that are not happening, no matter what we try or for how long. Sometimes, I shake my fist in the air out of frustration. Sometimes, I just take a deep breath, sigh, and acknowledge that tomorrow is another day to try again. Sometimes, I wonder just how long I will be able to do this…
Regardless of my reactions, Brian remains consistently resilient, at least most of the time. I actually am in awe of him: Brian is the like the little engine that could! He will complain often and may not want or like to do something, but ultimately, with time, repetition, prompts, rewards, and encouragement, Brian continues to persevere and try. He has done this all of his life! It speaks volumes of his character and fighting spirit, despite all the obstacles that are placed in his path due to Down syndrome and autism. Brian will always have to work very hard for the most basic things in life that most of us take for granted. I can tell you this is hard to witness at times, but, I am very grateful that this truth has not changed his beautiful heart and fighting spirit to achieve the things that he can in his own time. I couldn’t be more proud of my boy! He continues to teach me so much about my own limitations and priorities and what they really should be…
Today is just another day filled with perpetual prompts of the physical and verbal kind, along with the hope that this will be THE day that our son or daughter achieves a particular skill or a task that they have been working on for days, weeks, or years. Yes, today just might be that day! If so, what a celebration that will be, filled with praise and favorite rewards. All of the effort and hard work has finally paid off! When these days happen, savor every delicious moment, and reflect on these successes often, especially during the inevitable difficult days ahead. Parents need hope and encouragement just as much as their special children do. Defer to your children often; even non-verbal children, like Brian, can communicate quite clearly what is working or not working for them when it comes to learning skills. I have had to learn Brian’s “language” so that I know how to proceed. Follow their lead, encourage every step, have very flexible expectations, and don’t give up, but do take breaks, because it’s humanly impossible to parent a disabled child without them. Adapt, revamp, create, move on- whatever it takes for your child to learn best, while minimizing frustration for all concerned. Remember, nothing is written in stone. I often ask myself the question: “ How important is X skill really? How important will it be to Brian next year or 10 years from now? The answers to those questions usually determine where we place our time and effort.
Perpetual prompting perhaps peeves people (especially parents), but in its proper perspective, it is just one of the many tools that we use to teach our children skills that they will need to learn. Special kids eventually learn independence from the prompting process in many instances to the point of no longer needing prompts at all, except for a verbal reminder. This is the ultimate goal and why we persevere with the prompting process to begin with and what keeps us going. Yes, it definitely takes the patience of Job and strength of Hercules to prompt our kids every single waking hour of each day, so pay careful attention to not only how they respond, but check your own reactions as well and take breaks as needed.
Best wishes for a very healthy and joyful 2021! May this be a year of great hope and joy for your special children and families! Keep on keeping on with all things great and small this year , prompted or not! Until next time, thanks for reading! 😊