Relieved

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!

Recharged

It’s comical that I’m feeling recharged right now. I have been traveling for work all week long and laying in the same hotel room I was in 36 hours earlier. I’m not complaining though; I have an incredible career that allows me to work in the field of education and collaborate with school districts daily, but traveling from one district to the next in this grand state of Texas literally can mean that I am flying from one city to the next in a single day. Technically, I should be falling fast asleep in this amazing Embassy Suites king size bed, but today was a GREAT day and I am not ready to clock out just yet.

I have begun my hunt for Nico’s elementary school for next school year. This has been a journey I have been silently dreading for quite some time now. Nico has been so insulated with support and advocacy at his current school, which services all children on the spectrum, that I have become spoiled by the notion that every teacher Nico has is also his therapist and has chosen to work with kiddos like him. Moving him into a traditional elementary school doesn’t come with the same guarantee that the teachers who work with Nico are ready, willing, and able to work with kids on the Autism spectrum.

I woke up today with nervous anticipation and a preconceived notion of what I would learn from these school visits: NO school would be good enough for my son and his needs. But, I can honestly say that I have never felt so hopeful and excited for what next year has in store for Nico. Our local public elementary school has recharged me completely! First off, having 15 years of public education under my career belt and being a product of public school have always been the driving forces in my desire to place my child in a public school. We are beyond fortunate to have this national luxury and I believe it’s something all children should be privy to. However, the state of special education in our public school system has left much to be desired so I was not 100% sold on the idea that Nico could get what he needed from such an environment.

But, after touring our local elementary school and speaking with the guidance counselor, special education coordinator, encountering some of the most darling and polite students, and learning that the school teaches empathy and awareness everyday (they employ a “buddy” program between 5th graders and Kindergartners, I mean…that’s awesome), I am able to breath just a bit easier about this precarious transition.

I went in armed with my questions and I encourage all of you, regardless if you have a special needs child or not, to do the same. I made my list ahead of time, but also researched other questions that should be asked of a special needs program and this school had a thoughtful answer for each one! Here is the set of questions I used if you’re interested. No question was left unanswered and I was able to observe all Kindergarten classroom environments up close and personal. They even have a sensory classroom which is KEY for kids on the spectrum; they sometimes need a place to decompress and recharge if they are struggling with sensory processing. Many children and adults on the Autism spectrum have sensory processing issues and this can make it very difficult for them to learn effectively.

I left the school with a pep in my step and a renewed sense of hope! I saw Nico thriving in that environment, laughing with friends who saw him and not just his Autism. I saw him smiling ear to ear while on the school bus heading to a field trip and could envision him strutting down the hallway to his favorite special, Library time. I mean, their library is to die for! Nico will be in hog heaven surrounded by all those books. It melts my heart just thinking about it.

Today I had infinite hope for Nico’s future and it was an inclusive one! I know Nico will have his struggles and his off days. I may even be a bit overzealous with my excitement, but for the first time in a long time my mental and emotional and physical batteries are recharged!

And speaking of being recharged, I must recommend an amazing soundtrack that resonates so deeply in my home: The Greatest Showman. This film and its soundtrack speak volumes regarding diversity, inclusion, and realized dreams. There is one song in particular that has quickly evolved into my personal anthem for Nico. The song is titled, This is Me and it fires me up every time I listen to it. I might even be secretly performing it in my car or in the shower when no one is looking…just saying. Hell, who am I fooling, my secret wish in life (besides wanting to be a marine biologist) has always been to perform on Broadway so this song is being performed practically anywhere I can belt it out (privately, of course).

If you’re in need of some recharging yourself, check it out. Or, just quiet your thoughts and remember this: no one will ever know your kids as well as you, so you will always steer the ship in the right direction when it comes to them. We truly are the GREATEST showmen and women in our very own family circuses…mic drop!

Disheartened

(FYI: I bold terms that relate to the world of Autism in support of awareness and education. In some instances, I will hyperlink these terms to literature that will provide you further information. Just trying to do my part for the Autism community.)

I live life by seeing the “glass half full” as much as possible. I have been faced with some pretty tough hardships, but have managed to survive them with a bit more strength each time. Nico’s Autism has been, by far, the toughest hardship of my life. I like to force myself into thinking that it’s actually my Mom’s tragic death (she died when I was 17) that is my ultimate hardship because I don’t want to believe that my precious son could ever be a hardship, but on days like today it’s difficult to convince myself otherwise. And today isn’t even the worst of days we have had with Nico, but it’s one that leaves me feeling disheartened.

See, Nico is still minimally verbal. He is definitely not nonverbal; he can communicate basic needs and can communicate with some 2-3 word sentences, but there is really no two-way communication with him. I’m not able to enjoy hearing him rattle off how his day was at school or how he feels when I am gone all week for work. Our conversations are very one-sided; I share with him and ask him questions and he takes it in without much response back. Instead, Nico mostly repeats back what I am saying. One hallmark behavior of Autism is echolalia and Nico is extremely echolalic.

We have worked so hard on helping him work through this behavior and respond appropriately to questions and conversations. Some days are better than others, but most days he walks around the house scripting books he has memorized by heart. Nico loves books…no, I mean he literally LOVES books. They are his toys. He has 100s of books and he spends his days listening to his books being read aloud on random YouTube Kids channels that he somehow finds on his own. It’s like listening to audiobooks, but instead of a professional who was hired to read that book for audio purposes, Nico finds aspiring internet TV actors who must do this in their down time between casting calls and their 3 part time jobs. Some of them are real characters, but they must have had great phonics and reading teachers because they pronounce well and are very engaging. That’s honestly all I care about (being a former English Language Arts teacher); my kiddo must always have great articulation and know his grammar rules….even if he may never fully communicate…sigh.

Just saying that makes me tear up. I want Nico to start talking so much more than he is. He has such an expanded vocabulary. I know because he is reciting book after book to himself and the words he is spewing out are not just run of the mill high frequency words that Kindergarteners his age are working with. He just isn’t using this vocabulary in appropriate ways yet. Instead, we have to stop him from scripting, have him look us in the eye so he knows we need his attention, and then ask him a question or communicate something to him. At that point, we pray that he registers what we said and responds appropriately. However, more often than not, Nico repeats what we say which then causes us to spiral down the rabbit hole of using our prompts like, “you can say…” or “look at me and listen…” over and over again until we get some semblance of a correct, registered response.

Today has been a day like that. Nico is just not responding appropriately and I feel like we are regressing instead of moving forward. I cannot fathom a world where my son cannot communicate with me. I want to have deep conversations with him, crack up laughing from his jokes, console him when he has a crappy day. I am wallowing a bit today, I know. I am currently looking at my glass as half empty, which is so out of character for me, but it is what it is. Autism is my greatest hardship. It’s uncertainty and lack of answers eats me alive. I go to bed thinking about it and wake up to it beating down my door.

When Nico was first diagnosed, I asked the pediatric neurologist point blank: “will he ever talk?” and he told me that he wasn’t sure. He said that research is showing that most children, if they do not start communicating by age 8, may never fully communicate at all. Their communication will be limited. I feel like Nico is a ticking countdown timer and age 8 is our expiration date even though I have spent endless hours researching and have heard countless stories of children with Autism learning to communicate later in life and going on to earn college degrees. I know in my heart Nico is meant to do great things in his life and that is what silences this dreaded timer in my head.

I will not; however, forget to recognize how damn lucky I am though. I know of other Autism families with children and adults who are much more severely impaired than Nico. I always have a strong level of perspective around this, but I am a realist. I allow myself to feel my feelings fully and deeply. This is how I am able to push forward each day. Life for us isn’t easy. I can’t “fix” any of it. I have to just stay the course and keep advocating with patience, love, and hope. What keeps my glass half full today though is the fact that my son is a literacy nut, just like his mama! His absolute love for words and language is infinite and so I know he is building the most incredible repertoire of vocabulary in that mystical brain of his everyday.

Which, to be honest, makes this whole post the most insanely ironic one ever to be read. Ha, how ’bout that?