Heart to Heart

Happy Sunday afternoon friends, families and viewers! It’s been awhile, it always is. I seem to regularly take myself in and out of action but I don’t ever go too far, nonetheless, I do apologize for the lack of posts but I assure you I’ve been VERY BUSY.

Today is a very special day however- I don’t talk about this too often on my blog but if you didn’t know, today is National Autism Awareness day. So in light of that, I thought it would be important to briefly go over some of my every day struggles, milestones, and ongoing education about this condition as some or all of you may already know, my little human being, my baby, my son, has autism spectrum disorder.

On most days he is a bouncing, happy go lucky, cheerful little six year old. He laughs, cries, walks, eats, and plays just like you and me or any other growing child for that matter. And yes, he looks just like any other very capable “normal” child, as some people have mentioned before that “he doesn’t look autistic”…we’ll get to that in a minute. We climb lots of peaks, and tumble plenty of lows in this household. It may get stormy from time to time, and we sometimes feel beat and defeated, but we always remind ourselves to take it one day, and one step at a time for love is patient and love is kind.

We have come a LONG ways though, since Rowyn’s diagnosis 4.5 years ago. It’s definitely been life changing in more ways than one. He is in kindergarten now and loves school. He attends a regular classroom part-time and works one-on-one part time with his special-Ed teacher whom we absolutely adore and have done wonderful work. And here’s also where our story unfolds. With my heart worn up my sleeve, I know that on any given day, my son cannot share with me how his day went. If I find a bruise or a cut on him, he can’t tell me how it happened, not unless it was witnessed by an adult and then relayed to me. He can’t share with me his happiest moments and his saddest moments – although we work effortlessly to build onto and improve his communication skills, I know deep in my heart that I would have missed years of him being able to tell me all the little things that mattered most. What’s even more sad? It’s not that he can’t feel, or that he doesn’t experience these moments of hurt and happiness, he just can’t express it or put it into words, so he just shrugs it off and disregards it. We often talk about the simple things, anything and everything I can squeeze out of him, all the things I can make affirmation to, like “What did you EAT for lunch today?” “Did you go on a FIELD TRIP trip today? WHERE did you go?” “What BOOK did you guys read for STORY TIME today?” “What should we do AFTER DINNER?”

Our Monday-Friday struggles – Kindergarteners have HOMEWORK?! Must be the thing these days (something I absolutely 100% disapprove of, a soapbox on it’s own). Each week Rowyn comes home with a math pamphlet – I can’t even begin to tell you the STRUGGLES. I cry EVERY SINGLE NIGHT when I work on it with him. Perhaps I’m weak? Perhaps I’m just an overworked and dramatic mom who doesn’t have enough patience? But I tell you what- if you think you have it hard helping your average child plug through grade-school homework, you have no idea. What frustrates me most is that no matter how frustrated I get after countless re-direction and repetition, I can’t even be upset because I know it’s not his fault, he can’t help not understanding the material and grasping the concept. The more I try and the harder I push, his autism steps out from the shadows and takes over faster and faster until he breaks. Now his concentrations gone, he’s emotionally distraught, he starts to fiddle, he stares into space, he cries, and 3/5 times he’ll throw a tantrum. I routinely remove everything from within his reach and quietly step away for a breather outside hoping not to break completely but to regain my composure. That time usually allows him to settle down as well, and sometimes that’s all he needs. Other times – we just have to throw in the towel.

ROUTINE has also been a very big part of our lives. It’s sometimes the KEY, and he drives which way the wheels will turn. Because we understand how important consistency and routine is for his behavior and development, we try our best to follow what has been set in place. For example, one time I was home sick from work and he couldn’t cope with that because the routine is, Mommy gets up early and goes to work just as he’s getting up and DADDY is the one that helps him do his morning cares and puts him on the bus. So, to avoid a serious meltdown right before school, I observed from afar and only interfered when he allowed. Now that he’s getting older, with consistent reminders, he’s able to tolerate change a little better.

Speaking of life changes – what kind of strength do you think it takes a mother to remind herself day after day, for Y E A R S that your own child loves you.  For a part of his life, Rowyn seldomly showed affection towards me. He was cold and withdrawn, and for the longest time, repulsed by hugs and kisses. He would take his toy and walk away from me when I would try to bond with him, he would try to wiggle his way out of my arms and lap for a chance of solitude. He would go to strangers (friends/family) and not feel the need to want to come back to me. I would be nonexistent and he wouldn’t look or long for me. As a toddler, he would often times crawl to the opposite corner of the bed from me and curl up to sleep by himself. Yes…I had many sleepless nights, and cried my eyes dry. This little human being of mine, this beautiful sitting, crawling, trotting, smiling creation that I’ve made and almost traded my life for had no ounce of affection for me – quite heartbreaking when you imagined life as a Mother in a completely different way. So you can only imagine what kind of a day it was when things finally clicked and that little light-bulb in his intelligent little mind came on and he willingly embraced me for the first time.  Love doesn’t even begin to describe the feeling. That seemed like many moons ago, and we’ve thankfully had so many hugs and kisses since then. He began to understand what it meant to be comforted and loved and embraced in both happy times and in sad times. It was the beginning to his interaction and social development skills.

This is just a small glimpse into our lives. Its so much more complicated and involved. One would really have to spend a day with a child special as him to understand the impact of everything and everyone that surrounds him. I share this not to inappropriately expose my own child, but to educate those who aren’t aware. The more people know the more they can understand, the more they can help and intervene, and if nothing else, the more they can learn to appreciate whatever it is that “normal” means in their own lives. Autism has many faces, not just one. And the spectrum piece says a lot. The condition is never the same in everyone, every special child sits on a spectrum and has a different level of functions and abilities. One of Rowyn’s strong suites is his memory, the ability to (when he chooses to) focus on and memorize the smallest of details and the most mundane of things, something that exceeds almost 100% of his peers.

Autism is nothing more than trivial issues and headlines when it’s about someone else and it doesn’t affect you. Once it does, it takes on a whole new meaning. Having a special needs child has changed my life, my perception, my take and stand on so many things in my life. God bless those who take in special needs children, god bless those who has the heart and patience to aid and educate these children, and god please sincerely bless each and every single parent of a special needs child. It takes so much strength and devotion to stay grounded and sane and to continue fighting to not give up. It takes so much testament and trials to hit the smallest breakthroughs, but in the end it is so worth it. At the end of the day, he is mine, he is beautiful, and I know that someday he’ll understand all that I have done and sacrificed for him.

The next time that you see a special needs family, whether it’s at a quiet sit down dinner in a restaurant, or in line at the store during rush hour, or at a beautiful serene nature park, before you make a judgment, before you allow their world to inconveniently interrupt yours, give yourself a couple of seconds to think about what that family goes through. I’ve seen the looks, I’ve heard the comments and judgments. Please be sincere, please be kind; Autism is not a choice.

 

 

 

 

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