The Journey of Many Miles

You have heard the Chinese proverb: “A journey of a thousand miles begins with a single step”. In the special needs world, ” a journey of one mile often takes thousands of steps”- literally! Who knew that our kids lives could be broken down, analyzed, dissected, or evaluated in such a way, but Brian has certainly shown me how this is exactly the case, for better or worse. I never really thought that essential life skills could be broken down to the most basic steps, as we neurotypical types just automatically proceed when we do things, without ever thinking about it.

I do take things for granted sometimes and can forget the incredible amount of repetition and effort it takes for Brian to accomplish the smallest of things. I wish it wasn’t so hard for him; I sometimes struggle with the reality that Brian will always require lots of steps, of one kind or another, to accomplish the most simple tasks. So, in order to proceed, I have to pick my battles- “how important is it really?”, specifically, what things will Brian need to do/understand, versus what I would like him to accomplish? Sometimes the two are not mutually exclusive. Sometimes my pride gets in the way and my thinking gets distorted. Although well-intended, I have chosen the wrong priorities for my son in the past , based on what my heart would like for him and what I thought was necessary, instead of what will be most practical and important for him in the long run. Hope springs eternal, but the line between positive thinking and reality can become blurred. I continue to both struggle and learn, just like Brian. I’m glad that he is most patient with me, although I can’t say that I have always been so patient with him.

Brian’s school uses a teaching method called Applied Behavioral Analysis (ABA). ABA takes a basic skill and breaks it down into small steps for learning and mastery of the skill. Positive reinforcements are utilized for each step achieved and data is taken to record a student’s progress, so it’s easy to measure/track a student’s learning. ABA teaching does not work for everyone, but the small step/ repetitive approach has worked for Brian well overall. It’s a helpful way to determine exactly how Brian is learning, in conjunction with feedback from teachers and therapists, since Brian can’t tell me. He will most likely always require some type of ABA teaching for the rest of his life. There is no limit to the thousands of educational skills that can be taught, including vocational/ self help skills.

Like everything else, it has taken lots of time and data to see Brian’s true success with this type of teaching. Some skills are easier learned than others. Some have not been learned at all or never will be, despite the amount of time and effort. We continue to reassess, readjust, and move forward based on previous outcomes to the attainment of new goals. It’s a never- ending cycle. It’s also a blessing and a curse that will remain for a lifetime. Taking life one day at a time is critical. Having a sense of humor on this journey with our children is imperative, lest we take all that is required of us as parents a little too much to heart. I am constantly looking for those funny moments (even dark, humorous ones) as a means of coping and putting things in their proper perspective and it usually serves me well- at the very least I can laugh at some absurd things and get my mind off of what I can’t control, which is always preferred.

When I look back in review of my “thousand mile journey” with Brian so far, the steps have been infinite, slow, and often tedious. There have been moments that I have seriously questioned my sanity. There have also been times where I can hardly contain my elation and joy! This life tapestry with my son is rich in so much: belief, success, trauma, tragedy, disappointment, frustration, sorrow, and hope. This is the stuff that all of us experience in life, it keeps us moving forward on our own journeys, sometimes willingly, sometimes not. Our kids lives are exactly the same! Our tapestry is woven together with the strongest bonds of love, strand by strand, held together by faith and God’s grace. I don’t always agree with the pattern and will often question “why”? Perhaps the real question should be: “Why not?” and “You will see…” I am slowly learning that, step by step… it may take thousands of steps until mastery, but I have the best teacher in my son, and for that, I am truly grateful.❤️❤️

Thanks for reading- until we meet again! 😊

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