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.