by Beth Roberts
One step at a time: my way of coping with Autism, and life in general.
To some, the phrase “one step at a time” may sound ridiculously cliche, but I think I can speak for many others when I say for me, it’s a way of life.
For those of you that dont know me, I’m a bit of a perfectionist by nature so this phrase is something I have to remind myself of every single day. The truth is, the Pinterest-like picture I’ve had in my head for my life is nowhere near my reality. Before the judgement sets in, I’m completely aware that those are unrealistic expectations. Still, I would love to be able to say that I’m the perfect mom, wife, friend, housekeeper, therapist, the list could go on and on.
What I can honestly say is that I try my best in every single area and although I’m slacking in some, I am proud of who I am. It comes down to the simple fact that the more energy we put into something, the less we will have for other areas. While working with clients feeling stressed or not good enough, I often use the analogy of my house being a complete disaster most of the time. Again, in my picture-perfect world, I would come home to a spotless and organized place but I’m not ashamed to admit that more often than not the dishes and laundry are overflowing, the toys scattered around look like a daycare and I’m not entirely sure when I dusted last. So my solution is to pick one and perfect it. We obviously shouldnt completely neglect the other areas but have one main focus at a time. Instead of feeling defeated, exhausted and overwhelmed, taking one step allows us to feel accomplished and motivated.
To often have to use this logic when it comes to helping my son Blaine, who in case you are unaware was diagnosed with Autism at the age of two. From the moment I found out I was having a boy, that perfect picture again popped into my head. I imagined his first words, Christmas, T-ball game and everything in between and of course they were all perfect. But again, reality set in and it was not the case. Don’t get me wrong, in my eyes Blaine himself is absolutely perfect and I love him with every ounce of me but I would be lying if I said that I didnt want more for his life than what he has.
At the age of 5, Blaine remains nonverbal, not potty-trained, and completely dependent in almost every aspect. What I wouldnt give to help him be developmentally equivalent to his peers and not just because it would be easier for my husband and I but more so because I want him to experience, understand and enjoy life. His list of needs is far more extensive than mine for housework unfortunately and I often get caught up in the demands, not knowing which way to turn. There have been more moments than I would like to admit in which I have felt completely helpless, finding myself running in circles and unsure if I had what it takes. My strategy in those moments is to take a minute, prioritize and choose a first step to move forward. We have had so many focus points throughout our journey in Blaine’s short 5 years on this earth.
We have and continue to participate in a number of different therapies and protocols as well as work with different specialists. Our current step with Blaine is to focus on feeding. Like many children with Autism, Blaine has severe food aversions and an extremely limited diet. Up until this point his diet consisted of 5 foods: stage 2 baby food, bananas, chips (only a certain kind of course), french fries and yogurt melts. And trust me, its definitely not from a lack of trying. I’ll admit though, this has not been our main concern as he appears physically healthy and has always maintained a healthy weight. That all changed at our last Dr. appointment in which we were given the results of his recent stool, urine and blood tests. The results indicate that Blaine has a bacteria in his gut that basically feeds off of carbs, which makes sense as that is all he craves. We were informed that although he was getting the necessary calories, it was not nourishing his body and actually causing more harm than good. We were ordered to immediately eliminate all preferred foods with the exception of baby food as that is how we deliver his supplements with the hopes he will try new foods when hungry. I was immediately terrified but the Dr. reassured us that he will be getting plenty of nutrients from his 26 different supplements. So here we are, it is my number one priority to help him be healthy. But for the record, I absolutely HATE it! I hate feeling like I’m starving my child even though he is constantly being offered a variety of foods. I hate feeling the frustration that comes along with repeating and praying for him to “just take a bite”. I hate that our schedule is still dependent on when and where we can feed him. But this is just another step and I’m going to face it head on until it’s perfect, as possible anyway. So for now, you will find me researching, asking questions and continue with strategies for oral desensitization and feeding.
With all of this being said, I’d like to add that life is not about being perfect, but rather finding a perfect balance. I know I can speak for others when I say I’m overwhelmed with all of the condradicting expectations we have for ourselves.
We are told to exercise regularly but get plenty of rest. To eat healthy but not spend too much time in the kitchen neglecting our family. To not be cheap and give your children the gift of memories through trips and excitement but also save for the future and not leave them with financial burdens. To take time to ourself but too much would be selfish. To pick your battles but not give in. This list could also go on and on. So even when we have our steps prioritized and in line, it’s critical that we find that balance. Because just like laundry and dishes, the demands are always there. We could either spend our time as robots going from one to the next, just stand there frustrated and completely overwhelmed while they pile up or find somewhere in the middle.
My plan is to balance working my butt off for each step but also take time to enjoy the people I’m fighting so hard for. Just like when you’re taking a trip to the beach, you keep your destination in mind, but make plenty of stops along the way when needed.
To Blaine, Mike, Mckenzie, Maxley, my friends, family, and clients, even though I’m well aware that I sometimes drop the ball and don’t come close to what you deserve, I hope you all know that you will always get the best of what I have to give. My promise for you all is to continue working towards the next step while attempting to be present. For in those moments that I see a smile on your face and peace in your heart, it is so worth it and my world is perfect.
Pieces of Me is a blog with content driven from what is inspiring me, Amanda Owen, to live a life that impacts others. The journey of becoming a nonprofit organization called Puzzle Pieces (mission is to support those with disabilities) in 2012 at age 28 years old, has taught me and continues to teach me more about life everyday. My journey of “life” is about living a life of purpose and impact from having a brother with a disability. Dive into more blogs related to all the pieces of me by following Pieces of Me Facebook page or my Instagram: piecesofmebyamanda or CLICK HERE for my website
I am a sister, I am a teacher, I am a caretaker, I am a leader, and I am “you”…
Amanda Owen