Wrung Dry

Special needs parenting changes everything. It changes how you look at every single thing in your past, present, and future.

I catch myself asking all sorts of questions…

How did I get here?

Why do I feel so alone and tired? Is it possible to throw in the towel today?

Do I have it in me to keep going at this pace?

Special needs parenting will push you to the utter limits of exhaustion, with bags under your eyes, pounding headaches, and the desire to just lock yourself away with your child for what will feel like forever.

It will test your marriage, wreak havoc on your health, drain your bank account as you find ways to pay for every waking hour of private therapy available, diminish your friendships and definitely keep you from making new ones.

You’ll have moments of pure elation when your child hits a milestone you didn’t see coming followed by days of tearful pleas to God, and whomever else can possibly perform miracles, when your child plateaus with progress and seems to be stuck in neutral.

But, when life is good you relish in every single second of it. You try to slow down time so that you can feel this sense of nirvana for as long as possible because you know it may not last much longer, but for your own mental, emotional, and physical health you need it to.

You take hold of the moments when your child is content. He’s smiling and laughing, playing appropriately and working so hard to use the wealth of words you know he has plenty of in that wondrous and brilliant brain of his.

You grab your husband—your partner and best friend—and burst out crying with tears of joy—and not despair—for a change because you feel a sense of hope and relief wash over you. This sliver of euphoria transfers to every other facet of your life and for that brief moment in time all seems right in your universe. You wish you could capture it in a bottle and consume a little every time your spirit starts to wane.

I wish I had that magical elixir right now.

We’re currently plateauing with Nico. There’s really no progress and it has my anxiety and despair at an all-time high. I’m trying to reach him; drowning out all the distractions and pushing him to just look at me and listen to my voice on a daily basis.

I tell him over and over again that I understand how hard his brain works and I know it can be tough to focus, but that it’s just him and me right now. I kiss him and hug him and profess my utter adoration for him because he is such a great kid!

“Talk to me, Nico. Use those words that I know you have. Ask me a question. Or, answer my questions. Mommy wants to talk to you so badly. Don’t you want to share something with me? Tell me what you’re watching? Why do you like this video? Please! Anything!”

Nothing. I get nothing. Just eyes looking through me and past me. There’s language, but not for me. It’s him scripting something he has read or watched recently that he is now fixated on. I’m angry and jealous because his therapists tell us a different story when we pick him up from his sessions. How he answers questions. How he asks questions appropriately. How he uses his words with them.

What is it about me that keeps his communication at bay?

I kiss his forehead and hurry to the bathroom so he doesn’t see me fall apart…again.

I have been clinging to some promising news that he has friends from class who have RSVP’d to his birthday party. This has been keeping me afloat as of late. The first party ever that we were brave enough to invite kids from his class. We were encouraged when we heard that he had lots of “best friends” in his class who “helped him” and thought he was “so cool.”

We decided to take the leap. Invite the class to his party. We are thrilled with our 2 RSVPs and hope more kids can make it, but this birthday party will be fabulous for Nico no matter what like all his other birthdays have been because of our family who shower him with love and always show up. His “protective shield” as I like to consider them.

They’re my protective shield these days too.

Special needs parenting is truly throwing me for a loop. I’m trying to keep up as best I can. When it’s good, it’s great, but when it’s tough, it’s debilitating.

I am working very hard though to be thankful for all that I have and all of the growth we have seen in Nico. ‘Tis the season.

I’m BEYOND thankful for his “best friends” in his class who keep an eye on him and accept him for who he is.

I’m thankful I have a husband who is on this journey with me; it’s infinitely easier when you have someone who can pick up the pieces when it’s too difficult to do anymore in that moment and has a glass of wine waiting when I’m working to bounce back.

And, I’m thankful for our little one, Max. Sometimes we don’t even have time to think about being special needs parents because we have a child so drastically different than Nico that he makes Nico and his Autism look like a walk in the park.

Max is giving me the healthy dose of perspective I need and the jolt of exuberance and laughter necessary when I am drowning in moments like today.

I know Nico will be fine. We will make sure of it because he deserves nothing less. He has given us nothing but extraordinary love which fuels me every single day to get up out of bed.

Today was a crap day. Tomorrow, I hope, will bring with it renewed hope.

Yes, special needs parenting turns life upside down. It throws curve balls and wrings you dry of almost all life, but then….

in an instant, can transform you into a version of yourself that looks and feels even better from the inside out. I promise. Just trust and believe in yourself and your kiddo.

If Not Me, Then Who?

Picking up Nico after school is something new for me. He took the bus home his Kinder year and all last year he was learning from home, so I had no idea what I was getting myself into this year. He is dismissed at 3pm and; yet, it is a parenting battle of wills to be one of the first in the pick-up line every single day. I had no clue how serious a commitment this was, but I was late one day and learned very quickly. It is no picnic being stuck out on the busy road as annoyed drivers honk and swerve around you because you’re sitting idle and blocking a perfectly good driving lane. So, I now arrive an hour early each afternoon on a quest to secure that ever coveted spot at the beginning of the line. I repeat, one hour early…

I really just aim to be the first in line because I know how hard my Nico works in school and how exhausted his brain and body must be by the end of the day.

Nico loves school and is ecstatic to go every single day. This makes my daily stress, reserved just for him, a little less consuming, but I’m finding that the challenges I’m facing with Nico’s schooling this year are lingering below the surface. The ones that could go unnoticed and unchecked if I wasn’t as clued in to what his IEP dictates.

An Individualized Educational Plan (IEP) is a legal document that includes the disability under which a child qualifies for special education services, the services the IEP team has determined the school will provide, yearly goals and objectives, and any accommodations that must be made to assist the child’s learning.

I had a wealth of experience with IEPs, but as a teacher. I was the one on the other side of the table promising to provide someone’s child everything he or she deserved and ensuring the parents that the IEP was going to be followed.

Now that I’m the parent of a child with an IEP, I am finding that my knowledge of and experience with IEPs may be a bit polarizing. On one hand, I know what to look for and how to advocate for my son, but on the other hand, all the insight and advocacy become overwhelming and can strain school-parent relationships.

In preparation for the start of this new year, I knew I needed a meeting with Nico’s whole teacher team to level set and provide as much background on Nico as possible. I started asking for one in July. He had been in a virtual school environment for a year and a half and the Special Ed. teacher team he had in Kindergarten was no longer at his school. There would be a lot of change and many new faces. A meeting was a must. I drafted up my annual “Intro to Nico” Welcome Letter and passed it out at Meet the Teacher Night. And, I thanked the office staff and administration in advance (with cookies just to sweeten the sentiment a bit more) for the occasional visits to the office Nico may have this year.

I did my part. I wanted the school to know I was in this with them. If I expect the world of them when it comes to my son, I am right there beside them with whatever they need.

Supporting a special needs child in a mainstream school, who is learning in an inclusive classroom, which is providing him the Least Restrictive Environment is no small feat. It’s a round the clock job and guess what? So is parenting that child, so when everyone is not on the same page challenges can creep in.

That meeting I asked for with Nico’s team before school started never happened though.

I was asking for it so that I could arm all of his teachers with as much information as possible regarding my son. IEPs are not always read by every teacher. Plus, no IEP will ever replace the sound advice of a mom. And as a result of no face time with the team, Nico’s first week was plagued with a series of unfortunate events that could have totally been avoided if my meeting request was fulfilled.

But then I realized that unless I continued to advocate for this meeting, I would be just as responsible for more challenges to arise.

I am fully aware that Nico is not the only student with autism in his school. There are teachers in his building who may have very little to no experience with teaching students with autism. The school is short-staffed. We’re still in the midst of a pandemic. There are a hundred and one reasons that could cause Nico to fall through the cracks if I’m not advocating for him. If I’m not doing my part to make Nico’s team aware of his needs and what will truly help him (and them) succeed.

The meeting was my first step in being a voice for my son. If I didn’t advocate for him, who would?

I have seen way too many children and young adults struggle in my teaching career because they didn’t have someone champion for them at the table opposite me. It takes patience, time, steadfast commitment, and an unconditional willingness to stay attuned to all aspects of your child’s special needs. I knew some of my students’ parents just didn’t have it in them, whether it be because they weren’t sure how to best support their child or because they just thought it was too much work.

But, this is what it means to be a special needs parent. Advocating for your child and building positive relationships with those who need to be the advocate in your absence.

So did a meeting finally commence? It certainly did. Was it now more of a reactive measure than a proactive measure? Unfortunately, yes. But, did his team and the administration leave with a completely different outlook on how to work with my son? Absolutely!

That one hour created the synergy I was hoping for. It uncovered so many inquiries his teachers had steadily been gathering during that inaugural week with Nico. I was able to provide them tips and tricks, behaviors to look out for, ways to help him manage his emotions, and, most importantly, what makes Nico—this happy, affectionate, fun-loving kid— who he is. The meeting also gave me insight into the Collaborative Classroom model his general and special education teachers were utilizing. Plus, I learned how comfortable they were with his IEP and if they felt equipped to help him reach his goals and objectives.

Now, did they leave the meeting and beg the administration to never talk to me again? Ha! Maybe, but I hope not because they are a great bunch of teachers. They sat and listened intently, empathized with me, asked thoughtful questions, and never once made it seem like my concerns were not valid.

I know it’s tough to deal with parents like me when a teacher’s job is demanding enough as it is. I get it, I was one. But, with that meeting I hope they learned more about me, Nico’s mom, and what I will do to support THEM. What I will do to ensure they have a successful year because if they aren’t feeling supported, my son won’t get the support he needs, and all of my advocacy will have been in vain.

Bottom line…our children have rights and, by law, their individualized educational needs must be met. There are numerous resources that can help you if this is foreign terrain and it seems too daunting to tackle alone. You can even hire a special education advocate or attorney who is well-versed when it comes to the Individuals with Disabilities Education Act (IDEA) to be your voice for your child when preparing the IEP.

Here are some valuable websites that will help you stand up for your child in the best and most informed way possible:

I know that I will be advocating for Nico the rest of my life in some form or fashion. That’s what tends to keep me up at night. Because if it’s not me, then who? I know it just isn’t reasonable to hope that I live forever, but if I knew it was a possibility maybe I wouldn’t feel so pressed for time to make sure I got Nico to a place where he could advocate for himself.

I think that’s why it stings every time I hear parents commend special needs parents for their hard work and advocacy; yet, neglect to ask the million dollar question which is: how can I help my child better connect with yours?To truly admire my advocacy is to emulate it. Learn from it and pass it on so that incredible kids like Nico don’t continue to be left out, stared at, whispered about in corners, and not given a chance to build authentic friendships with others. I would jump at the chance to help kids who I know are curious and unsure about my son better connect with him.

I’m thankful Nico is back at school. I can already tell that school is his happy place. I have to believe that that is because he feels like he belongs. My goal as his mother is to ensure that his sense of belonging continues to thrive and he continues to grow academically and social-emotionally with the help of every educational rockstar that works with him.

Because…I am reminded every single time Nico reads his all-time favorite book to me that:

Standing Out

Nico starts second grade this week. He will be back in-person at his elementary school after being a virtual learner for the last year and a half and I feel like we’re prepping for his Kindergarten year all over again. All of his first grade experiences were remote. I didn’t want Nico to connect school with what COVID had transformed it into during his first grade year. He may not have ever wanted to go back. For the first part of last year there was no recess, no lunchroom access, no rotations, and no real contact with classmates. These are all Nico’s most favorite things when it comes to school and I knew if he constantly heard “no” to every one of them it would have had a lasting impression. So instead, we trudged through virtual learning with the help of his miracle workers aka ABA therapy team and somehow survived the year.

I tried to fill his summer with a lot of fun and engagement since the school year was so trying for him. Virtual learning had taken a toll on me as well so I was in desperate need of some R&R. We went on an amazing beach vacation with our family, which included Nico’s cousins who know him like no one else and accept him for who he is. I always feel more at ease when we surround ourselves with others who “get it.” Who understand Nico and understand his Autism. It’s easier and less anxiety-inducing. And, as good fortune would have it, my husband and I connected with another Autism family on our trip. For once in our lives we had people outside of our family/friend circle to talk to who “got it.”

It was Nico’s cousin who recognized the behaviors that the little boy was displaying while we were all hanging in the pool one day and knew he “was like Nico.” She mentioned it to my husband and me and I couldn’t help but be proud of her because she was so empathetic towards this little boy. She didn’t just sit and stare at him or shy away from him like others can do when encountering an individual with Autism. Instead, she encouraged us to connect with his parents. I will forever be so thankful to her for urging us because once we met this lovely family and began sharing our stories of our sons it was like we were speaking our own language. I felt less alone and more empowered and I haven’t felt that way in a long time. We exchanged numbers and vowed to stay connected. It’s important to stay connected. It made me long for that type of connection with other families closer to home.

But, what I found this summer with that one family is what I hope for my son. It just takes one person to make you feel less alone…to feel included.

When Nico walks into his classroom this week, my hope is that his classmates will see past his stimming and scripting, will be open to his unique yet sometimes disruptive behaviors, and will give him more than one chance to show them that he’s a pretty cool, fun-loving kid even though he may not be able to keep up a conversation with them when they try talking to him.

And, I hope that Nico walks into his classroom with an excited disposition knowing he’s going to have a great time in second grade. I hope he leaves the worrying to me. I hope he is oblivious to what I am anxious and worried about and just focuses on whatever makes him happy in that moment (which will probably be his teacher’s amazing book corner). I feel like this is how he lives his life for the most part anyway. He is blissfully unaware of social acceptance; he has anxiety about things that HE deems important and that’s more than enough for him.

I read this incredible story the other day and I couldn’t help but be overcome with emotion by the end; that one person can make all the difference in the world. How proud his mother must be to have a son so empathetic and kind-hearted. I pray Nico’s spark attracts a good friend like that little boy. Someone who will stand next to my son and accept him for who he is. All kids deserve that. I want this year to be the start of many great years filled with friendships and acceptance and inclusion. I want to know that when I host birthday parties for Nico they will be filled with not just his family, but with friends he has made at school. And, I can only hope that he will be invited to some himself.

I tend to see social media posts floating around this time of year asking people to “choose kind” and I can’t help but think that they must’ve been initiated by parents just like me who are worried about their children being accepted and treated with respect. It’s a concern not just reserved for Autism parents. So today, I join the countless number of parents who, as they send their kids off to begin another school year, hope and pray that it’s a positive, uplifting and inclusive one. The world is filled with way too much negative energy and superficiality; it’s so tough to be a kid today. We have to start helping our children change this harmful narrative that can so easily penetrate their school hallways. With that said, my biggest hope for our students this year is this:

If you want to stand out in school, be the one who stands out by standing UP for and SIDE by SIDE with someone in need.

And to my Nico…we’ll take each day as it comes like we always do. Just do your best, be your best, and see the best in everyone and everything. Mom and Dad love you very much! Good luck!

Being Seen

Today autism won. Today it got the best of my Nico and me. I learned today that even though Nico has grown in so many ways, he is beginning to struggle with new issues that will bring about all new coping mechanisms for both him and my husband and me. Today I felt like I never wanted to take Nico out in public again and I haven’t felt that way in a very long time.

The signs were there since the morning so we probably should’ve known, but we have our family in town and we wanted to enjoy an evening out with them. Thank God for our family though. They are patient, understanding, empathetic, and always willing to stand right alongside my husband and me as we try our hardest to manage Nico when he is having a hard day. It can be taxing and I know it’s not fun to be around, but it brings me comfort knowing they’re there with us. I feel less alone and it helps keep my anxiety that starts creeping back in at bay.

I probably should’ve stayed home with Nico and let the rest of the family go to dinner, but I thought we could manage. The whining started as we were walking out. Why didn’t I take him back in and just say forget it? Then we get there and the muffled, repetitive “time to go home” responses kick in and I should’ve just headed to the car with him. But, the kicker was when he spilled his snack all over the floor and knew he couldn’t eat them after that.

It was all downhill from there. The crying started. The bellowing followed. The angry grunts began. And, he started banging the table in utter frustration. No amount of “calm down” or “stop it, Nico” from my husband would suffice. Even after my husband feverishly picked every last one of the dropped snacks off the ground and got them out of Nico’s sight, he still could not appease our poor, struggling child. And to make matters even worse (because, why not?), Nico stood up and started screaming so I had to grab him (while seated in a huge open and public outdoor eating area, mind you) to try and get him quiet and calm. I was hoping that if I squeezed him tightly it would provide him the input he was in desperate need of at that moment.

I could feel my throat start to tighten and the tears forming in the corners of my eyes. Not to mention all the stares from onlookers that felt suffocatingly too close for comfort. I was literally going to tell my husband to give me the car keys when I looked up and saw it.

The most endearing and sincere, smiling face.

Amidst the stares and curious glances, this one woman just looked at me, gave me the most compassionate smile and winked. It happened within seconds and yet those simple gestures brought me such peace.

I work so hard to stay patient. To keep my cool with Nico even though it’s a very difficult thing to do when you are tired and have a demanding toddler to manage as well, but I try my hardest to stay calm for Nico’s sake. I know he can’t help it in most instances like today. He was over sensitized, probably tired, mad that he dropped his snack, and struggling because his need for perfection tells him that he shouldn’t have done that so I was really reconciling with all of that in order to not lose my patience or burst out crying (which is really what I wanted to do). It’s what my Mom would refer to as “grace under pressure.” This ability to hold it together when inside you’re feeling like you’re falling apart. I learned this such grace from her and let me tell ya…it’s an art.

That was what was happening to me in that moment as I held Nico close to my chest, squeezing him so he would calm down while also providing him some input to help regulate his out of control behavior. And if it wasn’t for that kind woman’s simple gestures I may have not been able to keep my grace today.

I wish I could’ve said thank you to her. It felt so good to be seen. I’d always hoped that when I flashed a smile or supportive glance at a parent, struggling with a child, that it provided some sense of comfort, but now having experienced it myself I have to believe it did. I wonder if this woman had a special needs child and knew exactly what we were going through in those moments. Or, maybe she was just a parent who knew what it was like to have an off-day with a child. Either way, that smile and wink saved me mentally.

I wish I could say her gestures were magical and changed the whole dynamic of our evening, but alas, Nico still struggled throughout the rest of our dinner and didn’t make the evening a pleasant one. However, I just kept seeing that smile and wink flash in front of me and I was able to stay composed through the rest of our time at the restaurant.

Today made me really think long and hard again about what Nico’s future might have in store for us. If we’re now moving into a stage of obsessive compulsive behaviors and the need for constant control of everything and everyone, what will these next years usher in for him? Will I be able to keep my grace under pressure forever? Will our family stay patient and empathetic? Will he have any friends? Will we ever go out as a family and be able to enjoy ourselves?

I honestly don’t know. If you asked me for answers to these questions right now, the answer would probably be a resounding NO. But, after experiencing such divine intervention (in more ways than one, I’m sure) I have to believe that there will be more…

smiles in the grocery store

winks at a restaurant

compassion from the barber

miracles worked each day by his therapists

empathy and acceptance from his classmates

willingness to come to our home so Nico can stay home where he’s most comfortable

and embraces from family and friends when they are needed the absolute most to get me through the next meltdown, breakdown, struggle, etc.

I have to remember that tomorrow is a brand new day and it quite literally could be a terrific day for Nico. That’s typically how it works in our little world. However, I also know it could be a tough day for another parent out there in the universe and I want to always feel ready to share a wink and a smile with someone in need just as I was gifted with those lovely tokens of empathy today.

I used to be so scared to go out with Nico for fear of the stares we would get from others and although today brought me back to that place of fear and anxiety momentarily, I didn’t mind being seen today because it was through being seen that I received the most peace when struggling with my son’s autism. Life’s funny that way, I guess.

One Year Can Make A World of Difference

Today was Nico’s last day of school. He is officially a 2nd grader and we can finally close the door on this challenging, yet thriving school year. It seems surreal to think that Nico literally spent a whole academic year in a virtual learning environment and there were times where I didn’t think any of us were going to survive it, but here we are.

I get to sleep in a little longer tomorrow. Hallelujah!

Now, I know Nico did not learn nearly as much as he needed to because of this virtual landscape and I know he will head into 2nd grade a bit behind. But, today, as I heard Nico shout “I love you” to his classmates over Zoom who were all saying goodbye to him—classmates who have only met my son through a computer screen—I realized that Nico felt so accepted and included in his class that he knew to connect those feelings with love.

Nico always has a way of opening my eyes to things that I would have otherwise missed if I allowed myself to constantly worry about all of his struggles and the experiences he is missing out on. It’s not that I am pessimistic when it comes to Nico; I’m quite the optimist, but I feel that as an Autism mom my natural inclination is to want to eliminate as much struggle from my child’s life as possible. It’s a visceral feeling that can become all-consuming if I let it. And, in doing that, I sometimes overestimate how much of a struggle things really will be for my son.

Autism is just so unpredictable. One minute Nico can be flying high and life can be so smooth and then BAM! out of nowhere a meltdown rushes in and knocks the wind out of all of us and I am right back at the beginning of this journey with Nico, fearing the very worst and not wanting to expose him to anything or anyone else.

We did see a lot more meltdowns this school year, as I predicted we would, because of quarantine, virtual learning, and a lack social interaction, but as I watched Nico sleep this evening I thought about all he achieved and the ripple effect he had on me and so many others.

Here is my Top Ten List in honor of my Nico:

1. Nico learned the Pledge of Allegiance within a few days and recited it perfectly each morning with his class, remotely of course, with such prosody and cadence.

2. Nico can independently write every letter of the alphabet with control and more precision than I have ever seen from him before.

3. Nico was a top reader in his class and answered questions when he was called on by his teacher even though he never stepped foot in her classroom. All of his interactions were via Zoom and yet he sat and participated which was not easy for him to do day in and day out.

4. Nico began to demonstrate feelings of embarrassment and the desire for privacy. This was huge for me because it indicated to me that my son was growing up. He’s not a “baby” anymore.

5. Nico conquered his fear of using the bathroom to take care of all of his business. This one right here was a show-stopper because I really felt it may never come, but it came as a result, I believe, of #4 above. I don’t think he could bare the idea of his parents having to manage his bathroom needs like we do for his baby brother. This one also taught me that Nico truly does everything on his own time. I need to just trust in him to know when it’s time.

6. Nico started interacting and communicating more regularly with his little brother, Max and, in turn, learned how to more effectively communicate what he does not like. I think Nico picked up this new level of communication pretty quickly since his little brother definitely doesn’t know boundaries and could care less that “No, Max, no!” actually means NO! Stop! I’m done playing with you! Cracks me up just thinking about it.

7. Nico made friends with his classmates without ever meeting them in person or stepping foot into the classroom. Somehow these children just knew Nico was someone they wanted to know and be friends with and it made his year…and mine. They would cheer him on and ask where he was when he wasn’t on Zoom, which just melts my heart. I want to thank their teacher for building a culture of acceptance, hug each and every one of them and their parents.

8. Nico encouraged me (and he probably doesn’t even realize it) to make a huge change in my career so that I could continue to be present for his daily milestones, but also show him that his mom will continue to do whatever she needs to in order to give him the best quality of life.

9. Nico grew his skill sets in all of the areas that interest him the most: technology, swimming, dance, reading, and theater (mostly crying on-demand, but he is darn good). I know this child is meant to do great things in this world and I have to nurture these skill sets moving forward so that he can feel comfortable exploring them as he gets older without anxiety and restraint.

10. And, lastly, my sweet boy grew up on me. I don’t know when it happened, but I looked at him this week and I didn’t see a small child anymore. I see a grown boy who is thriving and maturing. Just thinking about it makes me choke up. He’s come so far.

I think sometimes I forget that because he doesn’t always talk to me like a typical 8 year old or interact with me like a typical 8 year old that he is stuck at an age where I need to take constant care of him. This may be true for all parents of their “babies,” but today when I looked at Nico I saw him through new eyes.

He is my sweet, endearing, funny, pensive, acutely aware first born child and he is one year smarter, stronger, cuter, braver, kinder, taller, and…

closer to the point where hopefully he’ll be able to share with me, in his own words, what a difference a year made in his life…through his eyes.

I truly can’t believe what a difference one year makes though. It can feel so sublime and significant and, yet, simultaneously represent just a notch on the timeline of your life. Some years will be stellar and some will just be survived. This year ended up being a mix of both. I’m just so relieved I/he made it through.

So to my cool, new 2nd grader…

You did it, Nico! Your dad and I are so proud of you. We love you beyond measure.

Beyond Content

I’m sitting in my hot tub on Mother’s Day eve 2021, after a delicious Italian meal delivered by a wonderful food service app and I could not be more chill. God bless these apps, by the way, because I literally had no intention on cooking today and there was nothing in the house of substance for my men—big, medium, small, and extra small—to eat.

It’s Mother’s Day weekend and I could not be more content in my life right now. I don’t know when I have felt this way in such a long time. And, I know the fact that I just uttered the words out loud means that something will come soon and knock me off my feet, I’m sure, but I don’t care. Life is good right now.

I’m listening to some great music and drinking an insanely delicious sangria I made, compliments of the Food Network app (technology is a God send, I tell ya), and thinking about my Mom. I know she’s with me. I feel the wind blow each time a memory of us together comes to mind. I think that’s why I’m at such peace.

I’m also at peace because my Nico hit one of the BIGGEST milestones to date this week. He is officially using the bathroom for both #1 and #2. I know that may seem like a shock to some of you that my 8 year old has not been using the toilet to take a bowel movement, but this is one of the many struggles of Autism and we have been on this rocky journey with Nico for awhile now.

No balloon drop or confetti party or trip to the bookstore would convince my child to use the bathroom for anything other than to urinate so my husband and I have had to change our growing child’s diaper/pull-up for years now. It’s been a sobering experience for us as well as Nico because Nico knows it’s not normal. And, as he has gotten older he has become more uncomfortable with the idea of being “changed” like a baby…like his baby brother.

But, out of nowhere, this week—on his own terms like everything else in his life has been—he decided it was time. He retired the pull-up and christened the toilet and my husband and I are BEYOND ecstatic. We weren’t expecting it. Had no idea he even had to go. He just decided on his own that he was ready. I think I pulled my back out lifting him off the ground and spinning him around because I was so thrilled he accomplished such a feat. We have been giddy all week. We could tell even Nico knew this was a big moment because he tends to only look intently at us for recognition when he knows he’s done something amazing and worthy of praise.

And just like any proud parent, I called his grandparents and aunts and uncles and bragged about it because THIS is HUGE for all of us! This is something to celebrate.

This is what Autism looks like at times. This is what Autism parents celebrate behind closed doors when others are celebrating 1st place medals or making it onto the varsity sports team. Now, Nico will definitely get 1st place in something and I’m sure if he wanted to try out for swimming or gymnastics he could most definitely make it to varsity eventually, but the fact that my child does not have to worry about a human basic need and when/where to manage it is monumental to me.

So, as I sit here and enjoy the solitude of my backyard oasis, thanks to my adoring husband who gave this to me, I am beyond content as an Autism mom, which is not something I have felt this consistently since we started on this journey with Nico.

Bringing Maximo into our lives has only stood to serve as more of a reason why I am as content as I am. Max has brought out so many amazing qualities in Nico. All I want to do is watch them play together. It’s been a dream of mine that I didn’t think would ever truly come to fruition, but it has. My sons have a true bond and they enjoy each other. Nico doesn’t interact with anyone quite like how he does with Max.

I had the chance to get all poodled up tonight and go out with my hubs for a night on the town, but I literally just wanted to spend it admiring my boys, my backyard, and the fact that I can breath without feeling any sense of anxiety.

And, even if this feeling of contentment doesn’t last long, I know now that it can exist. I never thought it could and would before.

Happy Mother’s Day to all my fellow Autism moms. You’re on my mind and I hope and pray you find a bit of contentment, if not more, in YOUR day. You deserve it and infinitely more. And, to all the moms out there including all my family moms, thank you for your love and support and advocacy.

And, to my Mama…I saw you today. I see you everyday in the boys. Their smiles and in their eyes. I know you’re never far away.

Ripple Effect

I woke up today and Nico was staring at me. I’m not sure how long he had been laying there waiting for me to open my eyes, but as soon as our eyes were locked in on each other he said, “Good morning, Mom! Time to get up and face the day!” I swear to you I almost burst into tears, but held it together and just squeezed him tightly and praised him for using his words and starting my morning off on such a high note. The fact that those words came so naturally meant two things: 1. he’s getting better with his verbal communication and 2. he likes when I wake him up with that same exact greeting which is where he got it from…me.

I have really been pinching myself lately because every time I turn around Nico is saying something new and it’s being communicated so naturally. He told me the other day, “I want you to read me this book and then I want goldfish, please.” I swear, I thought I hallucinated. I could not believe my son, the one who I have prayed for daily and feared might never use full sentences, spoke to me like a typical child and without any prompting or coaching from me. He literally just came up to me on the couch with his book and spoke to me like he had been doing this sort of thing all along.

That time I did cry and I grabbed him and hugged him for what felt like, for him at least, an awkwardly long time, but I just could not let that moment pass without letting him know how proud I was of him. However, because Nico is such a literal person he did not like that I cried. It made him anxious, thinking something was wrong with me or that maybe he did something wrong and my Nico is a pleaser so I had to quickly get a grip and lighten the mood otherwise this milestone could’ve turned into a meltdown.

Nico is very in tune with others’ emotions and feelings and wants to make sure that everything is copacetic at all times. It’s one of the many areas of growth I have seen in him, especially since Max has come into our lives and since the pandemic turned his/my world upside down. He sees me on a daily basis manage his little brother, Max’s little tantrums which are totally typical of a thriving toddler, but for Nico it does not seem typical. He doesn’t like to see or hear Max get worked up so he will normally either start competing in raising his volume when Max gets loud (which is so not pleasant and helpful in any way) or he will try to calm Max down by repeating the same phrase over and over, “it’s ok, it’s ok.” Neither have had a high success rate at all so I’m sure he is thrilled when I put on a little episode of Cocomelon—yep, there is no shame in my game—on my phone and distract him with it so I can finish changing his diaper.

So, it came as no surprise, but I was, again, utterly amazed when I learned that while out for date night with my husband Nico came to his grandpa’s rescue. Max was starting to give his grandpa a bit of a hard time and wouldn’t stop fussing and crying. Nico could obviously see that his grandpa was struggling to get Max content so he grabbed his iPad, found a Cocomelon episode and put it on the couch. As soon as Max heard the theme song he immediately stopped crying and it drew his attention to the iPad. Nico didn’t say a word. He just went back to reading his books and doing his own thing.

Nico, being the amazing problem-solver that he is and always observing what is happening around him, knew exactly how to get Max to settle down because he had seen his parents do the same thing before. When my father told me this, I looked over at Nico and praised him for his valiant efforts. He didn’t say a word, but the smile and the quick flapping of his hands let me know he understood that I was proud of him.

This school year has been hard for Nico. I know he is behind academically and will need a lot of work to get caught up come next year. It keeps me up at night just thinking about all the intervention he will continue to need on top of therapy, but then I think to moments like these where he is showing such growth, understanding, and maturity and I feel a bit less anxious.

He’s using more complete sentences daily like, “I want to go to sleep” or “I would like you to sit on the couch, please” and no one is prompting him to say any of it. He’s interacting with Max more and more everyday and he watches how we handle him which I know is helping him better understand how to manage Max too.

It is absolutely true that children learn from what they see and hear. That intrigues me, but also concerns me because with Nico I know he observes and internalizes everything around him. And because he is such a literal child, he doesn’t pick up on sarcasm or the nuances of a situation and that, in turn, can have a ripple effect. Learned behaviors are like ripple effects.

I’ve become more and more aware that Nico has been learning from what he sees and hears for awhile now even if it’s only now just starting to materialize into something WE can see and hear. He has felt my stress and anxiety from all that we experienced in these last 9 months with our house flood just like he feels my joy and elation when I wake him up in the morning and give him a big morning kiss.

I want to know that at the end of the day if this year was a crapshoot academically for him that at least he has learned some other amazing life and social skills from being home with his family. I want to know that each day is filled with teachable moments for him that will create a positive ripple effect in his life just like the ones I’ve seen as of late.

Nico is brilliant in so many facets of his life and I need to believe that all of these moments and experiences he is having, both positive and challenging, are going to help inform his life on several levels—socially, emotionally, and academically. As Nico has grown I have become less fearful of autism and more fascinated by its ambiguity. And although it still seems to carry this polarizing perception, I am feeling more and more compelled to focus on all the wondrous aspects of my Nico’s autistic brain.

At the height of the pandemic last year, I was having such a difficult time seeing Nico regress so I started clambering for anything I could find online that was providing support for autism parents living through the pandemic. I came across an article that truly turned my abysmal outlook on Nico’s autism on its head. I keep this article with its list of positive traits in my phone, my purse, on my computer, and I think I may even print it out and place it on my fridge to continue to remind myself that Nico is a terrific, awe-inspiring kiddo and as his mother, I have an immense responsibility in shaping who he will become. I want his ripple effect to be one that positively impacts the lives of everyone he touches. Thankfully, Nico has a little brother who will allow him to shine as the child who follows the rules and fulfills expectations since Max is busy creating his own ripple effect in our home which is filled with destruction and exhaustion.

The Wait is Over

After nine months of hopping from house to hotel to house to hotel, we are finally back in our own home! It seems surreal to even say that. I actually don’t even believe that it can be true because we have been out of this home for so long.

We left our house on June 30, 2020 for a small family trip to Chicago so that my husband’s Abuelita could meet her great-grandson (even if that meant we stood at the front door threshold, fully masked). COVID-19 had robbed her of so much joy. She loved being with her family and her great grandchildren brought her so much happiness, but this awful pandemic stripped those visits away from her and we knew she was physically, emotionally, and mentally feeling the toll.

Our plan was to drive straight through to Chicago—18 hours—and not stop except for the bathroom so as to limit any exposure to others. Nico is an all-star road-tripper, but my Maxo…not so much. I knew I wouldn’t get lucky twice. Let’s just say the last 4 hours were what I imagine entering the gateway to Hell to feel like. I always find it so incredibly fascinating when I worry more about Nico (out of habit) and it is my neurotypical son who has me pulling my hair out and praying to St. Jude. They really need to create travel size St. Jude candles, in my opinion. That sucker would’ve been lit the whole way.

Any who, we made it safely and were only planning on staying a short time since it was in the midst of COVID and there could be no grand family reunions or gatherings. Just a modest visit so Abuelita could lock eyes on her newest family treasure. Thankfully, she had her moment with Max (and Nico, of course, who she missed terribly and was overjoyed to reunite with as well) and cherished every minute of it. I knew how crucial it was for her to meet Max. I felt it was worth taking the extra precautions and wading through the risks and I will forever be thankful we made that tough call because she passed away two months later. Just one of the many extreme let downs of 2020. Thank God for photos and photographic memories. We will always remember our visit with our sweet Abuelita.

This quick visit to Chicago; however, actually turned into a two month staycation and signified the start of our insanely difficult journey towards getting back into our home. We never came back to our home after returning from Chicago and I haven’t slept in my own bed until last night. Almost 9 months later.

I was beyond petrified that this displacement was going to throw Nico for the biggest loop of his life considering he had already dealt with a completely dysfunctional last half of the school year, had to say goodbye to his cousins in Chicago, who he had lived with for basically the whole summer and are his best friends, and was now going to have to resume virtual schooling again after a two and a half month hiatus because we chose not to send him back to his elementary school for in-person learning.

But, I think my sweet boy should’ve been more worried about his mama since I was the one having the mental meltdowns on the daily while he seemed to be, for the most part, taking each day in stride. He had moments of struggle, but nothing like what I had anticipated which tells me that this kid of mine is making monumental gains on his quest to make sense of how to live with Autism.

I laid in bed last night and literally thought back to the many months that we were displaced from our home and how taxing it was. Yet, I could not help but think about all the amazing moments that were created from this insane series of unfortunate events. It’s like what they say about childbirth…no matter how difficult it may have been, when they put your baby in your arms all of the pain and exhaustion seem to just disappear. That’s how I was feeling in that moment laying in my bed.

All I thought about were the milestones that my sons made individually and together over these 9 challenging months:

-Nico sang karaoke to his favorite songs using the microphone Santa brought him. Initiated it with us and everything. He knew every single word.

-Max took his first steps and has not stopped moving ever since. He walked a month after his first birthday so not too shy of when his big bro took his first steps which were on his actual first birthday. Stairs are Max’s favorite part of any house…lucky us.

-Now that Max is mobile, Nico finds him so much more fun and they have become best buds. Max lights up whenever Nico gives him any attention and Nico flies off the couch whenever he hears Max wake up from his nap. He even says to us, “Let’s go get Bro-Bro!”

-And speaking of Nico talking more, his verbal communication is exploding. I know it’s because of Max which just melts my heart. He talks the most to him but that’s also because Max tends to invade Nico’s personal space a lot so Nico is having to set some ground rules: “No, Max.” “Don’t touch that, Max.” “No biting, Max.” Calm down, Max.” And my favorite… “It’s time for nigh nigh, Max.” Ha!

-Max is talking too and he can use sign language to communicate when he wants more of something. He tells us when he is all done, when he wants to be picked up, he knows how to say “Dada” (insert eye roll), and is trying to recite the alphabet with his Bro-Bro. He may not be saying “Mama” yet, but he shoots me this smile that I know is reserved just for me.

-Max drinks out of a sippy cup and will eat basically anything we eat. Thank you, Jesus! No more packing a separate bag of food for another kid. This one can order right off a menu!

-Nico has learned to share so well and is so patient. Max can be a handful and constantly wants all of Nico’s things, but my sweet boy willingly shares with his brother and does not respond in kind when Max bites, hits, kicks, or pulls his hair in protest after being asked to give Nico back his toys or books. There may be an occasional knock down or a swift grab and go, but for the most part Nico just gives me a look like, “Ummm…are you going to handle this?” when Max gets unruly.

Nico is the most social he has ever been and constantly wants to go outside to play. My Neeks has never really asked to go out and play. He has always been content to just sit in the house with his books and his iPad, but ever since Max has come into his life Nico wants to play outside with his little brother.

So, although these last 9 months were agonizing in so many ways, from sleepless nights and thinning hair to the testing of my patience and my marriage, I came home to my renovated first floor with my heart full and an endless amount of hope for Nico’s communication growth. Plus, Max gets to enjoy his home from a brand new perspective since he was 8 months old when we left it and now he’s a year and a half and capable of enjoying so much more of it…and with his big brother!

So Much Love

Valentine’s Day takes on various meanings depending on who you talk to, I’ve learned. For me, when I was dating my husband, it meant so much and if he wouldn’t have recognized the day in some way there would’ve been a few tears shed and some unanswered calls. Good thing for him, I could always be swooned by a sweet card. But now, with two kids in tow, V-Day is just another day for my husband and me to recognize how much love we have for each other, for our boys, for our family, and for all we have celebrated in our lives together. And because this Valentine’s Day 2021 is coinciding with a historic deep freeze that has taken the whole state of Texas hostage, I have had lots of time to reflect on everything I love and want to love forever. So, this is my shoutout to all things-LOVE:

1. I love that much of my life involves my husband in one way, shape, or form and we have such a great, storybook-like history and romance. And, we celebrate a day even grander in February than V-Day and that is our wedding anniversary.

2. I love that Nico just had the BEST haircut experience, to date, this weekend and not only does he look so handsome, but we have video to prove how much progress he has made these last five years.

3. I love that my Max eats Valentine’s Day treats so at least one of my kids will enjoy cookies and sweets when family and friends drop them off. Nico isn’t quite there yet, but slap a heart sticker on a box of Goldfish crackers and he’ll be swooning too.

4. I love that my dad still finds joy in buying Valentine’s Day cards and now he can buy them for his grandsons and fill them with little goodies for their piggy banks.

5. I love that I no longer feel the pressure to get dressed up and wait for hours for a dinner reservation when my husband is just as excited to have a home-cooked meal and a great bottle of wine at home.

6. I love being able to dress the boys up in red; they look so good in it with their dark hair and brown eyes. I know…I’m biased.

7. I love that I’ve always bought my Nico books for V-Day and he would memorize them cover to cover after I would read to him, but now when he gets a book he can actually read it to me…all by himself!

8. I love waking up on Valentine’s Day knowing that my husband is going to be a bit more charming, just to be on the safe side, since it is the day of all days to show the mother of his children (who endured countless hours of labor with one and a painful C-section with the other) lots of love and affection, especially since he is obsessed with his boys and did I mention he got his BOYS? #itsrainingmen #boysmom

9. I love all the social media posts from my friends and family showcasing love for their significant others. It’s nice to be witness to all that genuine love.

10. I love that my Mom loved to bake because Valentine’s Day always give me the best reason to bake up a storm. This year I went for a white chocolate raspberry cheesecake.

11. I love the friendship that Nico and Max are building and how it seems to be growing Nico’s language in miraculous ways. It still blows my mind every time I hear Nico say, “Max is up…let’s go get Max” or any other full sentence he says all on his own without any prompting.

12. I love the way both my boys’ eyes light up each time they smile and how I can see my Mom shining through in these briefs moments. They may look like their daddy, with eyes I can get lost in, but those smiles are reserved just for me and are a sign that she’s always with me.

13. I love that my boys are surrounded by such tremendous love. They see it and feel it and know exactly what it is. My boys know who love them because those people are the ones who always show up for them no matter what.

14. I love that my boys know how to show love. They express it and accept it unconditionally. I was worried when Nico was diagnosed with Autism that he wouldn’t like affection or know how to express love, but that couldn’t be further from our reality. Nico shows love everyday and because he does it so well so does Max. Max adores his big brother and their bond has certainly grown in these quarantined times.

Valentine’s Day 2021 will be one of love, lounging, lasagna, and libations. Cheers to love! ❤️

For All the Firsts

I have been very antsy as of late. Christmas is less than a week away and although I have been done with my shopping for awhile now, I am still unsettled. Normally, in the past, it was because I knew that Christmas Day wouldn’t be as magical for Nico as it was for other children, or even for my husband and me for that matter. Nico never truly understood that Santa brought these amazing gifts for him and laid them under the tree, pristinely wrapped with such care, and so waking up on this day lost a bit of its luster once Nico began his journey through the world of Autism.

He didn’t pay attention to the presents under the tree just waiting for him, nor would he rush to open all of his other gifts when everyone was doling them out at our family gatherings. He was content to just play in a corner somewhere with his little knickknacks in his own world. Meanwhile, his father and I were holding back tears and silently envying every other family whose children were ever present in these special Christmas moments with each other. It was these early Christmases after Nico’s diagnosis that made me miss my mom so deeply….all over again. I clung to this idea for so long that if maybe she was still here with us that she would have the magic touch and could transform Nico’s interest for Christmas into something magical like she always was able to do for her own children.

But, fast forward to today and Nico has grown tremendously. He understands who Santa is and that he is a special man that helps bring joy during Christmas. He also has begun to understand that the gifts under the tree have something to do with him. In these last two years, Nico has been more present with us during Christmas. He has opened gifts with eager anticipation and cheered when he or anyone around him has received a gift that was really wanted. Choosing the right gifts for Nico is a totally different story, but when it happens it’s like your life has been made because his eyes just explode with excitement and he tends to use so much appropriate language in those moments.

So, I know that the gifts he will receive this year from Santa will surely evoke the same giddy exhilaration, but I am now dealing with all new feelings of angst and discontent. And, I have been wracking my brain to determine why I can’t shake these feelings other than for the obvious reason…this awful pandemic has stripped so much of the typical joy and festivity from the holiday season. I have come to terms with the fact that there will be no large family gatherings and we won’t be opening gifts together with our family. I won’t be making a lavish Christmas dinner in my own home since we are still residing in a rental while ours is on the mend. I have reconciled with all of this, but I think what is truly affecting me this year are overwhelming feelings of sympathy, empathy and heartache.

This year has put my family through the ringer and has definitely had me longing for my mother in a way I haven’t felt in awhile, that’s for sure. But, it has also opened my eyes and heart to the thousands upon thousands of others who will be having their first Christmases without loved ones. Loved ones stolen away by this merciless virus. My newsfeed is taken over by countless stories of unimaginable loss everyday and it isn’t letting up. The deep heartache these poor, grieving families must be feeling coupled with knowing that they may not even be able to gather with their other family members for fear of compounding this loss with even more senseless loss.

The first Christmas, the first New Year’s Day, the first everything. I know these feelings of loss and longing all too well so I am here to let you know that if you are experiencing the first of many “firsts” without a parent, grandparent, child, spouse, aunt, uncle, cousin, friend, or significant other…your loss is not in vain.

Your loss is reverberating across this country through every doctor and nurse who couldn’t save their patients or allow for family to say their goodbyes face-to-face.

Your loss is being felt every time someone turns on the television and is faced with the growing number of cases and increasing mortality rate.

Your loss is being felt every time someone with pure ignorance in their heart decides to walk around carelessly without a mask.

Your loss is being felt by anyone and everyone who has lost loved ones this year or in years past and longs for their presence, touch, or voice just one more time, especially around the holidays.

Everything about 2020 has brought about so much angst, frustration, anger, disappointment, and heartache, but if there is one thing I would ask you to cling to it’s this: You are NOT alone.

You truly are not alone in what you are experiencing and I don’t think there have been more than a few times in our history where, as a nation…hell, as a world, we could say just that and really mean it. So, if you can find it in yourself to pull any kind of silver lining out of your grief this Christmas let it be this universal sense of sympathy and empathy that is absolutely rippling across the world right now.

My mom has been gone for 23 years and, although I miss her everyday, time does help with mending broken hearts and finding a sense of normalcy again. It doesn’t come without a lot of tears, a need for constant embrace, an ear to listen, and words of encouragement though.

And, since this year has been so unconventional and is causing me to think of how much I wish my mother was here, I have even thought about doing something radical like jumping in my car with my boys, big and little, and just traveling to a place where we can forget all about the sorrows and struggles we’ve faced this year. We can enjoy a complete change of scenery—since nothing about this Christmas fits the norm anyway—and just recharge our mental and emotional batteries, make new, fun memories, and ring in the new year on a high note.

I encourage you to consider doing the same thing! Be bold, be brave, and create a journey of healing for yourself that will allow you to grieve, but also allow you to reflect, remember, and make new memories that can be used to help these “firsts” sting a little less.

Remember…grief has no expiration date. Feel all your feelings, but don’t feel afraid or guilty to laugh or smile or seek a bit of merriment right now. Don’t let this pandemic steal everything from you.

So, please accept this post as a call to action, a shoulder to cry on, a warm embrace, a listening ear, or the encouraging words you may need right now to get you through the next minute, hour, day, week, or month as you grieve these “firsts.”

Merry Christmas, Happy Hanukkah, Happy Kwanzaa, and have a very Happy New Year as we kick 2020 the hell out of here and ring in 2021 with renewed hope! And, may your loved ones Rest In Peace.