Raising children and adults with Autism has incredibly high points for sure! Their brains work in such mystifying ways that I catch myself waiting with bated breath when Nico interacts with something new or sees something for the first time. Our doctors and therapists told us very early on that Nico was brilliant (which I don’t broadcast, but today I feel like I need to say it out loud) and so we have always taken such comfort in that fact. I know he has amazing skill sets that defy his age; yet, what we struggle with on the daily seems so simple. These are the low points for Nico in the world of Autism.
There are currently three areas of struggle for Nico that we have been trying to conquer for some time now: 1. less scripting (I talked about this in one of my earlier blogs), 2. expanding his diet to include more fruits, vegetables, proteins—honestly, anything other than gold fish crackers and apples—and, 3. using a toilet when he has to go poop. Yep..I said poop. Not gonna even try to politically correct that word up. These 3 areas of need consume my time, thoughts, and, at times, patience.
The scripting is tough because Nico is using words; he just isn’t using them appropriately. He doesn’t use them to have conversations with his family and friends. He just recites page after page of memorized text from his favorite books. It’s a bittersweet moment every time he does it because I love hearing his voice (he has such great tone and inflection…he could be a public speaker someday with that voice), but I know it’s not meant for me, so to speak. He’s not necessarily speaking to me at all. It’s just part of his repertoire of ASD behaviors. We even have to physically cup his face in our hands sometimes so that he knows we are asking him to stop and focus on us. Otherwise, he would live in his own literary world scripting away.
When it comes to his diet, Nico could truly be a contender, if not the champion, for eating the most Goldfish cheddar crackers in the world. He would eat them all day long if we allowed it…oh wait…we do. But, that’s because he eats so few things we feel compelled to give them to him. Besides, asking for Goldfish crackers is one of the complete sentences he has actually mastered and we have been so proud of him for that. Aside from those, he loves apples. But, don’t get it twisted! He ONLY eats Honey Crisp Apples, yep, the “Cadillac of apples.” We tried for years to introduce him to many other varieties that mimicked the sheer deliciousness of the Honey Crisp, but he turned his nose up every time. I am convinced we will have to eventually take out a second mortgage or relocate to a Honey Crisp apple orchard if this demand keeps up. Nico will dabble in other foods here and there, but Goldfish crackers, apples, and citrus juices are his jam. We wanna call out the National Guard when we can’t find his favorite juice or the darn Honey Crisps at any of our stores. It can become that desperate. Nico has begun to try other foods with some coaxing and encouragement–pizza, peanut butter and jelly, grapes, cookies–but, nothing has stuck. The struggle is soooooo real.
Our last struggle is one that can be a bit uncomfortable to talk about and address openly, but this is a true reality for children and adults on the spectrum. Nico still will not go poop on a toilet. He has to use a disposable undergarment aka “pull up” to void #2. There, that’s a therapy term for ya (it just sounds so official though, like something NASA engineers would say in conversation…I’m not that fancy). This is pretty common for children on the spectrum and I know other families that are currently struggling with the same issue with children even older than Nico.
So, what does this look like for Nico? Well, when Nico has to go he comes and asks us for a pull up. This is a HUGE milestone considering he didn’t use his words in the past and things would get really unpleasant for all of us since he wears big boy underwear everyday. Now, at least, he lets us know when he needs a pull up so that he can then go do his “business.” Ironically, he walks into the bathroom, closes the door, and does his thing in the appropriate location. If only he would look to his left and see that all could be fixed if he just sat down on that glorious porcelain bowl. This is a sliver lining though! Nico is fully aware that this is where everyone goes when they have to use the bathroom. He is also quite sheepish when he re-emerges from the bathroom because he knows that this routine he has going on isn’t something he should be doing. He almost seems embarrassed when he comes to let me know he has finished and needs assistance, which always breaks my heart a bit. This is how I know that he truly has a fear or phobia of using the toilet when it comes to #2. I mean, he can go #1 on the toilet all day long and loves to announce it with such vigor every time he has to go. He just can’t bring himself to use the toilet for anything else. This is our biggest struggle because Nico is 6 years old and about to head to Kindergarten in just over 6 months so we are in a race against time to get him on that toilet.
Now, you may be thinking, so why are you so relieved then? I don’t get it.
Well, let me tell you why. Despite these daily struggles, I truly am so relieved because I am not alone in any of this. Nico goes to an incredible program with the most selfless, hardworking, motivated, loving therapists you could ever hope to find and they are working with my husband and me, day after day, to turn Nico’s struggles into triumphs! These three struggles are the catalysts for the goals Nico’s therapists have set and the programs they have built to ensure we get Nico to where he needs to be. The therapy that Nico receives is called Applied Behavioral Analysis (ABA) and it has moved mountains for us. Nico’s therapists have our back so all the areas of need I just addressed are ones that Nico gets constant support with. They are teaching Nico slowly but surely how to better communicate and script less. They sit with him during lunch and spend basically two hours straight getting him to try new foods even though they know Nico may cry, hit, have a meltdown, or flat out refuse. And, they will come to our house for the weekend and take shifts sitting in the bathroom with Nico while he resists sitting on the toilet to go poop and thrashes about with anger, fear, and frustration. They do all of this and more because they believe Nico can do it all, just like me!
Whenever I drop Nico off at school after having a rough morning or feeling just a bit defeated in my quest to be the best Autism mom I can be, his therapists greet me, embrace my son, and always let me know that “today is going to be a great day for Nico!” They get it. They know it all takes time and that sometimes it’s gonna feel like we’re regressing, but they have my back. So, I walked out today feeling a wave of relief knowing that the ball isn’t dropped, time isn’t paused because I am not with Nico. His therapists pick up right where I left off. They are true “miracle workers” in my book.
I think we all need at least one “miracle worker” in our lives. I encourage you, too, to find this kind of relief in someone or something. Someone to walk side by side you, to have your back, and to be there to pick up the slack when you’re feeling defeated, stressed, or hopeless. After all, every one of us deserves to know that today is going to be a GREAT day!