Bittersweet

Having a child with Autism leaves you in a constant state of emotional limbo. My emotions can go from beyond ecstatic to bottomless pit of hopelessness in a single day. For the most part, I am endlessly hopeful and look forward to every day with Nico, knowing that he is going to blow my mind with some new, amazing action, sentence, or feat. This was how I woke up on Sunday…super pumped and looking forward to what the day had in store for Nico! After all, we were going to have two new experiences today: the San Antonio Rodeo and Nico’s first ever dance class. Excitement and nervous anticipation were in the air!

We love being able to spend time with our family so we were going to the rodeo with my cousin and her children. These are Nico’s best buds and I love that he is so close with them. They also serve as a security blanket for me so that Nico doesn’t have to experience certain things alone. We never know how Nico will do in public settings, although he has grown immensely over these last 3 years, so we plan our escape routes way in advance. We make it a point to always try new things with him so we piled into the car and were off to the rodeo! Yee-haw! It’s so comical because I am such a city slicker still. We stuck out like sore thumbs without our cowboy boots and hats, but we couldn’t wait to be a part of it all.

As predicted, Nico was not very interested in what the rodeo had to offer. He pet a few pigs, looked as interested as someone watching paint dry as we moved from farm animal to farm animal, and basically humored my husband and me as we fanatically pointed out all the sights and sounds of a real-life rodeo. I was proud of Nico for being so good, so content. I was happy that we could experience something new with our family. But, with every new experience comes some sense of grieving.

I have grieved the childhood I wanted for Nico since we got his diagnosis. I feel envy and longing every time I see another child enjoying something Nico struggles with and I can’t help but feel a sense of disappointment and frustration. ” I WANT THAT FOR MY KID” runs through my head constantly. This was what I experienced, yet again, at the rodeo when I watched all the children around Nico having fun, focusing intently on the next move the cow was going to make, running aimlessly around from attraction to attraction, and the way they ran to their parents to give them a play by play of what they just witnessed/experienced. Nico didn’t care about the petting zoo, he went through the motions as we participated in an agricultural activity, and he definitely had no feelings of FOMO (have no idea how he did not inherit the family FOMO gene, like his parents) as his cousins galavanted from one exciting site to the next. All he longed for was to sit and read his books on his iPad.

The one shining moment was when he walked right up to the Honey Nut Cheerios Bee all on his own and hugged him! It was surreal. It jolted me out of my state of grief just long enough to snap the perfect picture of him. My son actually looked at the camera! The day was not lost! We left shortly after that; I wanted to end it on a high note.

As we drove home, I teared up (turning my head towards the window so as to not concern my husband) instantly. I was holding it in so fiercely towards the end. I was sad, jealous, angry, and feeling so hopeless. I kept playing scenes from the rodeo in my head of other parents sulking when their kids were lingering too long at a pigpen, begging to get on another ride, or giving a play-by-play of what they just saw. I wanted to shout: “Suck it up, buttercup! You have no idea how lucky you are!” My husband and I would die if Nico simply told us he had fun at our outing in his own words with no prompting. In the same sense, I was working so hard to focus on the amazing picture we got of Nico and the fact that he had no meltdowns while we were there! It was truly a bittersweet experience.

Now, fast forward to the evening. It was Nico’s first dance class and I knew this experience would make up for all of the melancholy earlier. Nico walked in and as soon as he saw the expansive dance floor lined with mirrors he knew he was “home.” He immediately ran out to the middle of the floor and started doing his thing, watching himself intently in the mirror as he moved effortlessly from end to end. Nico truly is a hambone! A natural performer!

The organization that we joined is called Kinetic Kids–www.kinetickidstx.org–and they host various sports and extracurricular programs for students of all (dis)abilities. When my husband, my father, and I walked in to the studio that evening we also knew we were “home” because we were surrounded by other families with special needs children. I smiled from ear to ear the whole evening as I watched Nico take part in his first dance class. I caught myself itching to be a “dance mom”—cueing him to smile, mimicking the moves so as to give him further direction, and envisioning a life backstage as a member of his entourage while he travels the world with an A-List musician, like JLo or Justin Timberlake. Yep, my mind moved fast…can you blame me?

As we drove home from dance class, I silently scolded myself for being so bummed about our rodeo experience. Who cares that Nico didn’t care about the rodeo! So what? He just had a blast at dance class because that is what he is interested in. It’s all about finding what he is interested in. I stared at Nico as we drove home with such pride in my heart. I was so giddy thinking about all of the doors that dance could open for Nico as he grows up. It reminded me of a recent story I read regarding a dance troupe made up of all young men on the Autism spectrum. The mother of one of the young men talked about how dance had transformed her son in so many ways and made him more comfortable in his own skin. Nico has always loved music. I am convinced that that love was threaded into his DNA and cemented in the womb because music and dancing are such instrumental parts of my husband’s life and mine.

Nico has always loved dancing with us. One of the first words Nico ever said was “baila” (dance in Spanish) and it was followed by him holding his hand in the air for one of us to swoop him up in our arms and dance around the room with him. It broke our hearts when Nico stopped using words around 18 months because he wasn’t saying “baila” anymore and we thought he may never say it again nor understand how much that word and those actions which followed meant to all three of us.

However, I think we have come full circle in our quest to “BAILA” again! This journey back to dance is truly bittersweet, much like how our journey through the world of Autism has been. I know I will continue to have moments of ear-to-ear smiling and silently tearing up in the car after a tough day, but that’s life for everyone. For now, I’m gonna just jam out to “Can’t Stop the Feeling” by Justin Timberlake. It’s one of Nico’s dance class songs and, honestly, it sums up perfectly what life is like being an Autism mom. We’re filled with bittersweet, achingly deep feelings everyday for our kiddos and so we just have to let them flow and know that we’re all in this together! Basketcases UNITE!

Willing

Navigating the world of Autism has kept me on my toes for the last 4 years and I have had my fair share of sleepless nights because of it. I still have to remind myself every day when I wake up that Autism is just a part of who Nico is; it doesn’t define him completely. I know this in my heart, but sometimes, when he is stimming or scripting or having a meltdown, I worry that Autism is the only thing others will see…it’s the only thing I see. I hate even admitting that because I’m his mother for God’s sake; I shouldn’t even be allowed to think these thoughts, but I want to always be honest here.

Nico has grown leaps and bounds over these last four years since his diagnosis. I truly do marvel at how smart he is. How he sees things in such a unique way. I even enjoy when he is stimming and scripting now that I know more about what causes it. It’s actually quite a relief to understand the “why” behind Nico’s behaviors and I can more easily anticipate when he may have an upswing in them because of all that I have learned from my sweet boy. I just had to be willing to focus on what was important.

One of the first things I was ever willing to do was consider that Nico’s diet may be exacerbating his ASD behaviors and lack of communication. I would have never thought to begin the connection between Autism and diet if it wasn’t for a chance meeting with a dietician. We had a great conversation on the playground one day regarding Nico that lead her to sharing some major theories she, some of her fellow dietitians, and a group of pediatricians she worked with had begun to gather. It was all about the protein found in cow’s milk–casein–and how difficult it is to break down in the body. And because of its difficulty in breakdown, the protein was leaking into the bloodstream and affecting the body and brain. She shared with me that she was having major success with supporting families of children with Autism remove cow’s milk from their kids’ diets and once they did that these children began to communicate. Many of the children she had been working with were nonverbal, like Nico, but once they stopped drinking cow’s milk their language started to just explode.

I felt this was too good to be true and I knew how hard it was going to be to remove milk from Nico’s diet (he basically drank a gallon of milk every 3 days), so I was definitely apprehensive, but the thought of never hearing my son talk was just something I couldn’t bear so I was truly willing to do anything. Within 4 weeks of taking milk out of Nico’s diet completely and replacing it with coconut milk, Nico began using words! I swear on everything I love…it’s true. My husband and I could not believe it. We changed nothing else in Nico’s diet or therapy routines–he kept the same speech therapy schedule throughout this whole experiment–so we knew it had to be the milk.

That unlocked the doors to Nico steadily growing less nonverbal everyday, but in these last years since that first revelation we have seen a steady stream of stimming, echolalia, and other ASD behaviors. We have even recently seen a major upswing in Nico’s stimming, echolalia, and lack of appropriate communication while simultaneously noticing that he is requesting to eat more of his favorite food, Goldfish crackers within a day. He has been avoiding eating some of his other preferred items and only wanting Goldfish, which is made with gluten.

I had done a ton of research in these last years around gluten-free and casein-free diets and their association with Autism. Although much of the research was incomplete or inconclusive, there were pockets of studies that did point towards decreases in ASD behaviors so I have become willing to remove gluten from Nico’s diet. In these last two weeks, we have drastically decreased the amount of Goldfish crackers Nico eats and replaced this item with gluten-free cheese crackers (which thankfully he has taken to very well). With this change, we have actually seen a decrease in behaviors and an increase in appropriate communication again! He’s using full sentences to request needs and wants and seems able to pronounce words more effectively. Remarkably, Nico has an expanded vocabulary and has started to accurately pronounce these words again. Just like with the removal of the cow’s milk, we changed nothing in his diet other than the Goldfish crackers and we are seeing a change! I have to believe that the GFCF (gluten free/casein free) diet is having positive effects on Nico’s overall gut health which is decreasing his ASD behaviors.

Now, I want to be very clear: I am not saying that this will work for your child/adult on the spectrum, but if I hadn’t been willing to try I would never have known. I started with Autism Speaks when researching this topic and was surprised that they were saying these diets were not helping those with Autism. It was kind of a punch to the gut for me (excuse the pun…you know I love ’em), but I just kept on. That’s all I ask you to do for your child…just keep on researching! I have pulled a few articles that helped me make these decisions. Start here and continue your own research:

Gluten Free and Dairy Free Diets for Autism: My Experience

Treating the Gut is Vitally Important for Autism Spectrum Disorder

I have learned that I must be willing to do anything I can to ensure Nico has the best quality of life. That may mean pushing him outside of his comfort zone, refusing to give him Goldfish even when he asks in a full sentence with a “please” at the end, or going with my gut (I know, I know…just let me have it) despite what the popular opinion is, but whatever I do it will always be something I analyze and overanalyze. I will never make rash decisions just because I want to give Autism a swift kick in the ass every now and then.

And this willingness is actually spilling over into other facets of my life as of late. I have always prided myself in being able to handle things on my own with little help. Some may say it’s because I’m a bit of a control freak (if my husband is reading this he is probably saying “damn right”), but I just feel better when the ownership is on me. So, it shocked me tonight when I actually took up my grocery store bagger’s offer to help load up the car with my groceries. I have NEVER been willing to take that offer up before….I mean, I’m not an eighty year old woman, but I am realizing more and more these days that I can’t and don’t have to do everything on my own. Life is hard and being a working mom of a child with Autism is exhausting, so I am willing to admit that I need help. We don’t have to be on point 24-7 just because we can be. And now with the extra energy I didn’t have to exude tonight I am able to watch an extra episode of my Netflix series…score! It’s the little things…am I right?

Thankful

This post is dedicated to all of the amazing grandparents helping to raise their grandchildren…we, parents, could seriously not do it without y’all.

I was always very apprehensive when planning a future that included children. I knew I was very career-driven and would not be able to stay home with my children on the daily. Plus, in this day and age, with the exorbitant cost of daycare and cost of living, a one-income household is not the norm. I also never thought my parents would be the ones to sacrifice their retirement years to care for their grandchildren full time. Hell, they talked about moving to Arizona or some other retiree paradise so my future family and I could come to a sunny place for vacay. They had put in their time already…and then some. I know the typical plan of action is to place your children in daycare, which we were going to do, but I still was always nervous about the implications of having someone that wasn’t blood taking care of my kid.

When my mother passed in 1997 (I was only 17 years old) I definitely became pensive about having children because I always thought I would have my “Wonder Woman” mom to guide my every move and the thought of navigating motherhood without her was just something I couldn’t bear. I, of course, still had my father, but let’s be honest, no one does it better than mom! But, when I tell you that my father has become my lifeline, my additional partner in parenting (thank goodness for my husband, of course), and the most sacrificing, giving, loving grandparent around, I need to share it with the world because the grandpa living in my home is a lifesaver!

When Nico was born, my husband and I were already in a great place when it came to who would help us with Nico once we went back to work; my aunt (another Wonder Woman) had just retired and offered to be Nico’s nanny. I was completely flabbergasted when she offered and even more humbled when I saw how quickly she jumped in. My husband and I were doubly fortunate because we have always lived near family and so, between his and mine, we have been insulated with love and support. Nico was going to be all good, that was for sure. My aunt had already rescued me by taking up the reigns when my mom died. She was there for anything my father (her brother), my brother, and I needed so to have her taking care of Nico, as his “honorary grandma,” just felt right. It lessened the yearning I had for my mom knowing that I had my aunt by my side, especially once we received Nico’s Autism diagnosis. My aunt was right there by my side learning everything there was to know about Autism and it’s effects on Nico. My father; however, became my personal hero early on with helping to raise Nico. He was never the most hands-on father with his own neurotypical kids so helping to raise a child with Autism was definitely not in his wheelhouse, but he buckled his seatbelt and jumped on the roller coaster with us regardless of how scared and uncertain he was. What he did from the start and continues to do grounds me in such humility every time I think of it.

My father was the typical “bread winner” of the family. He went to work, put food on the table, made sure I had a roof over my head, and made sure I didn’t have to want for anything. My mother, however, was everything else for me. It was my mom who I was attached at the hip to (my brother was clinging to the other one) and she was the one who I always envisioned taking the lead in the grandparent department because that was just who she was. But, Nico has become the saving grace for my father in so many ways. My father has said quite often that Nico has given him a purpose in life again and I certainly agree.

In these 6 years that Nico has invaded my father’s heart, my father has taken on a whole new lease in life. My father uprooted everything he knew to move with my family and me to Texas so we could give Nico a better quality of life. That, in itself, is not something any grandparent is expected to do EVER, but my father has really reinvented himself with this change. Being with Nico on this adventure (as we like to call this chapter in our life down here in the Lone Star state) has taught him patience, empathy, how to not take himself so seriously, and how to channel all his love (that he didn’t quite know how to show at times) into helping Nico progress through the world of Autism and provide him a home where he never has to want for anything.

Grandparents have that special place in our children’s lives that is so unique. My in-laws love our son immensely and it kills us to be hundreds of miles away from them, but I tell ya, when we get home and he sees them his heart skips a beat. They are the silly, playful grandparents that every kid hopes for! We always loved having sleepovers at Nana and Papos’ house because we would stay up late laughing and dancing–two of Nico’s favorite things to do! He adores them. And if that wasn’t enough, Nico is super blessed to have his great-grandma in his life still. Abuelita’s love for Nico and the pride she has in him just radiates off her every time she sees him. It makes my husband so happy to know that he can share the love he has for his grandma with his own son. She misses Nico so much and since she can’t travel to Texas to see him we FaceTime as much as possible so she can keep up with his progress. Thank goodness for these technological wonders!

I have recently been seeing many articles that talk about how good it is for grandparents to help raise their grandchildren. Its keeping them healthier, more active, happier, and actually even keeping them alive longer. I can totally see how this research is true because my father has so much more pep in his step than in years past. Here are a few articles that highlight this growing trend:

To all the grandparents–we couldn’t do this without you Thank you.

Grandparents May Live Longer if  They Help Out with Grandkids (Seriously!)

Grandparents Who Babysit Live Longer, Study Finds

In today’s world, parents do not have the luxury to give all of themselves to their children and their jobs equally; something is always being sacrificed. An overwhelming sense of guilt washes over me whenever I have to leave Nico for work, but I am so incredibly thankful that my son has someone who loves him just as much as I do waiting to take the reigns when I can’t. I am truly blessed and lucky that my son has his grandparents in his life and that they would move mountains for him. So, to all the grandparents out there going the extra mile for us parents so that we can build a great life for our kiddos…I raise my glass to you (although I know some of you are already a few glasses ahead of me as you prepare for another week of grand parenting…lol)! Cheers and THANK YOU!