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.