The road of a special needs parent is quite simply paved with potholes. Along my journey with my son, I have fallen into many of those potholes, but I’ve also learned a lot – about people, patience, and mostly about myself. I’m far from done grasping all that my son has to teach me, but I have realized how profoundly this experience has changed me and what it has imparted to me so far. This is what I wish someone had told me when I first started down this very bumpy road.
I’m not the kind of person that accepts help easily. Or willingly. Or gracefully. I’ve always tried to do things myself, without bothering anyone else. When my son was born, or more accurately, after he became ill, I began the long journey to try to accept that I simply cannot be everything that he needs. Mom, nurse, teacher, TSS, BSC, SLP, OT, PT, psychologist, drill sergeant, procurer of equipment, supply order-er, scheduler, case manager – the list goes on and on.
All I ever wanted was to take the very best care of him and of his sister, but because his needs are so great, that means I have had to learn to ask for help. If I don’t ask for help regularly, I cannot fill all the very demanding and necessary roles in his life. Because, in the end, my goal is not to do it all alone, but to have him grow and learn and have the very best quality of life possible.
This life I’m living as a special needs parent requires firm and decisive decisions, even when they are uncomfortable and unpopular. I’ve been told many times something simply “can’t be done” and I tend to see that as a personal challenge. You think potty training is out of reach for my 9 year old? Wrong – it has taken a will of steel and the help of many others who are invested in helping Gus (see #1) but he has been continent for nearly 3 years. I know best about my child, and you know best about yours.
I still struggle with this one. If only I could…………you fill in the blank. There is always something that gets short-changed and I think that is just part of life. Sometimes I don’t get to every single PT exercise we are supposed to do. Sometimes I let Gus stim a little too long on his favorite IPad book so that I can have a cup of tea in relative peace (minus Dr. Seuss’ Sleep Book or Peter Rabbit droning on in the background over and over and…) Occasionally I give myself a break from making Gus “help” pick up sticks in the yard or put his clothes away simply because it is easier! I’m human and I have my limits. And tomorrow is another day.
Or, as my mom would say, “This too shall pass.” When you are in the thick of a problem or a challenge, there is no worse feeling. No more helpless, awful dread of just how bad it is. Maybe your son scratches you incessantly and you are covered with marks all over your hands and arms in various stages of healing. Maybe people ask you when you go to the grocery store if you have a really mean cat... Maybe your son likes to sneakily take butter or black beans out of the fridge and mash/smear them everywhere. Maybe his chronic pain is so bad that he cries and hurts himself all day, every day and you think it is never going to get better.
Sometimes it’s days and sometimes it’s years, but everything eventually changes. We have gone through some really, really daunting challenges with my son, but no matter what the problem has been, it eventually changes. It may not stop entirely or be fixed completely, but time has a way of marching on and you keep marching right along with it. I look back on the Great Black Bean Incident of 2009 and laugh now.
I used to believe that someday, after a lot of hard work on my part of course, things would “get back to normal.” Insert laugh here. I spent a lot of really precious energy in the beginning in trying to get back to somewhere that didn’t exist anymore. My energy would have been better spent adjusting to the “new normal” and trying to accept that my life would be different than I ever could have imagined.
There is no going back, only forward. And I know that I am a much stronger, more resilient person that I ever would have been if I had lived the life I had thought I was preparing for.
This is what I have learned while traveling the very well-worn road of special needs parent. Surely I have much more ahead that my son will graciously impart to me as we continue to learn and grow together so that everyone in our family can have the very best quality of life possible. I’m just trying to fill in some of the pot-holes as I go. Please share this post with another special needs parent!