The Power of Friendship

When Nico was diagnosed with Autism, one of my first fears was whether or not he would have friends. I had seen my fair share of children and young adults with Autism as an educator and it broke my heart each time when I would walk into the lunch room and see them eating alone or observe them walking the halls by themselves. I’m sure that some of those students were perfectly content sitting alone. They may have even preferred it and I would tell myself that so as to not needlessly bombard them with unnecessary (and probably embarrassing) attention. But, I couldn’t help but wonder what life had in store for these kids. Would they always traverse through life isolated and separate when they had so much to offer in friendship and love?

Friendship is such a vital part of our lives. None of us can survive this life without at least one friend. Like me, Nico has been beyond blessed with so much family and his first and best friends have been his cousins. My first friends were also my cousins and they truly helped define the best parts of my childhood. To this day, they are on speed text and the first ones with whom I share any milestone or challenge. As I journeyed down my educational path, I learned that best friends weren’t just reserved for blood relatives and the friendships I built during those stages of my life helped me through all of life’s ups and downs. Now, many of those friendships I held dear have migrated to social media as life has changed and shifted, but they remain close to my heart because of the impact they had on me in those moments.

Nico is just beginning his journey into friendship building and for the first few years after his diagnosis I truly believed this journey was going to be fleeting because of his special needs and lack of language. The only comfort I found was that his family was where he found friendship and it would always be unconditional. They would always accept him for who he was. Then when we moved from Chicago to Texas I was stricken with fear all over again because we were leaving the only friends Nico knew. I was scared for myself as well because I, too, was going to have to venture out and find a whole new support system and in a whole new state, mind you. Our family had always been our lifeline and our major friend base.

Aside from our familial friendships, my husband and I found ourselves struggling to keep up our other friendships after Nico was diagnosed because we felt like we could not leave our home, with or without Nico. We always looked forward to the prospect of raising our children alongside our friends’ children, but our everyday normal ended up looking very different than that of our friends and we were limited to what we could do. We reached a place in our friendships where apologizing became the norm because we may have RSVP’d yes to a party, but if Nico was struggling that morning or on the verge of a meltdown we knew he would not survive a party. If we had finally mustered up enough energy to go out to dinner or meet up with friends it never failed that Nico would have a treacherous day and it would send us into a tailspin of stress and exhaustion. This would then cause us to have to cancel plans because all we wanted to do was sleep (and secretly cry in the bathroom) instead.

You learn the true meaning of unconditional friendship when you become a parent, especially a special needs parent. The life you lived pre-kids ceases to exist and any friendships that can survive the “early-parenting sabbatical” are the true and lasting ones; they pick up right where they left off (and with lots of libations)! These friendships are golden because you know you can always count on them to be there no matter what. These friendships are empathetic, forgiving, and fiercely overprotective.

Fast forward two and a half years later to our life in Texas and not only have my husband and I found an amazing community of other Autism families, but these families have become our closest friends. We have built unconditional friendships with these parents. We all “get it” when one of our kids is having a meltdown and a party cancellation must follow. We’re there for each other to celebrate the milestones and there to hold each other for the regressions and plateaus. There is never a worry about anyone showing up to a birthday party because we always show up for each other. I have been forever grateful for the friendships I have forged with these families; it makes me feel so much less alone. Being a special needs parent can be very lonely and isolating if you don’t find others that can relate to what you are going through on the daily.

If you are in need of support, turn to social media. There are so many support groups for Autism. You would be surprised at how powerful a friendship can be even if it’s a virtual one. These sites will provide wonderful supports and resources, as well as reassure you that you are not alone:

1. National Autism Association

2. Autism Speaks

4. MyAutism Team

Having these new friendships has really helped because we have now transitioned into a new world of friendship building with Nico as he has entered elementary school. I was beyond petrified at the beginning of the year that he would stick out like a sore thumb and possibly make zero friends. My vision of having a cool school mom crew to hang out with on the weekends had long dissipated and all I was concerned about was whether or not Nico would find a friend who thought he was as awesome, funny, and sweet as his mom and dad did.

Well, Nico hasn’t just forged one friendship in his Kindergarten class…he has forged several! The students in Nico’s class have demonstrated the absolutely indelible power of friendship. Nico may not be able to tell me their names or share with me all that they did together in school that day, but I know Nico loves being at school because he wakes up happy everyday, excited to go. I have to believe it’s because he can’t wait to see his friends. And, these children are showing Nico what unconditional friendship looks like daily because Nico is not always funny and sweet. Since Nico is still minimally verbal, there are days where he struggles and wants to hit or throw things out of frustration. Sometimes it is directed at his friends, not because he is being malicious, but because he doesn’t have the words to express his disappointment or disapproval. Most children might get upset if another child became physical with them in any sort of way, but not Nico’s friends. They find ways to empathize with him and know that if Nico is displaying these behaviors he is upset about something. They work to find out what is wrong and how they can help.

Did I mention they are six years old??

This first elementary school year for Nico has brought its fair share of triumphs and challenges. I do worry about Nico falling behind academically because of his special needs, but the one saving grace has truly been the friends he has made. I don’t know if Nico will keep all of these friendships throughout his elementary school years. I pray and hope he will retain many and even make some new ones along the way. But what I do know is this…these friendships Nico has built have restored my faith in the power of unconditional friendship and that it isn’t just reserved for adults. It’s alive and thriving in Kindergarten!

Oil and Water

Oil and water…an idiom I understand all too well. Growing up, my mother would say that my brother and I were like oil and water because we were always fighting. What she didn’t quite get though was that I adored my baby brother; however, he was six years younger than me and of the opposite sex so….yeah. I think of oil and water when I see finger paints or glitter or slime because both my husband and I would probably lose our minds if our boys ever asked to play with any of that. We are neurotic, OCD-grade, neat freaks and the thought of any of those creative play items in our home send chills up our spines.

Oil and water are also what come to mind when I think of Autism and me.

See, I am a classic control freak. Yes, the first step is admitting it and I did that years ago. I work very hard to keep it under control so I can actually have friends and a social life, but it still rears its ugly head more often than I’d like. It causes me to want to plan everything down to the minute, have multiple “Plan Bs,” and have a specific end goal in mind.

I am also a constant worrier. I have major anxiety. My joke has always been that I worry about how much I worry. I have learned to manage it better as an adult though. Most days, I can appear completely lucid and put together to the naked eye.

But, being an Autism parent AND an anxious, worrying, control freak makes oil and water look like a new savory macchiato from Starbucks.

Autism doesn’t play by the rules. It doesn’t follow a script. It goes buck wild at 2:30 in the morning. It has you running to the store to buy out the entire stock of V8 Fusion Peach Mango juice blend because it’s the only beverage your son will consume at this point in his life. Autism has you writing thank you notes to apple orchards that grow Honeycrisp apples because it is the only apple your son will eat and so you also beg them to produce that apple year round and make sure they will distribute it to Texas.

Autism did not ask me how I wanted to handle things when it decided to tag along in my son’s DNA backpack. It did not care that I am a “fixer” and I always work to ensure that life isn’t a struggle for those I love, especially my kids, because then it makes my life even more of a struggle and struggle isn’t a good look on me. Autism did not confer with me before it decided to throw my whole life plan, goal sheet, and playbook into the shredder because Autism has its own playbook.

Now, I don’t do well with uncertainty and spontaneity, but the journey we are on with Nico has been filled with both. I have had to truly reset my whole internal system in order to keep up because I like to have a plan.

In the beginning, when Nico was first diagnosed at age 2, I thought I wouldn’t survive the year….and it was January 5th when we got the diagnosis. I felt paralyzed. And, Nico struggled tremendously. We could not leave our house too often because he just could not handle unfamiliar environments. So, that meant foregoing birthday parties, weekend trips with friends, sporting events, play dates, and a sense of belonging. My husband and I have always been social butterflies so the idea of not being able to be around our friends and their kids because Nico might…strike that…WOULD have a full blown meltdown felt debilitating. I couldn’t plan for the future let alone the day because I had no idea if Nico would be able to handle it. I felt completely out of control and it sent my anxiety through the roof.

Fast forward five years, Nico is now 7 and a completely different child. Having four and a half years (and counting) of ABA therapy under his belt, plus occupational and speech therapies in those first 3 years of his diagnosis, Nico can manage so much better now. He is still minimally verbal; he doesn’t communicate other than to request things he needs and wants, but he has an incredibly rich vocabulary from his love of reading. He is a Kindergartner at a mainstream public school and he is thriving.

But…..I am still an anxious, worrying mess almost daily. You wanna know why?

And before I answer, I know that some of what I will point out is stuff all parents worry about, but for an Autism parent struggling with anxiety it’s magnified a bit more…

I worry that he is going to wander off one day into an unknown hall at school and won’t be able to tell anyone what classroom he is in.

I worry that he will have no idea what to do, where to run, or how to stay quiet if, Heaven forbid, an active shooter enters his school. In this day and age, I don’t dismiss any possible scenario no matter how outrageous it may seem.

I’m scared to death that he is going to traverse through life without ever being able to have a conversation when I know he is wicked smart and so funny.

I worry that he is not getting a full day’s worth of instruction in literacy, math, science, etc. because he has so many other tasks and behaviors that he has to manage. I don’t want him to fall behind any further than he already may be.

My mind races every night when I am about to leave on a work trip because I don’t want him to wake up and not see me in the morning. That could throw off his whole day and cause him to meltdown.

My heart races at the thought of him having a rough day at school, but thinking it will all be better at home–because mom is at home–just to find out that I am gone for two more days. That sinking feeling he will most certainly feel (even though his dad and grandpa are amazing and give him more than enough love). After all, he is a mama’s boy.

I worry that, because there is construction on the school roof, the noise could over sensitize him and cause him to hit his teachers and/or peers out of frustration.

I worry daily that his teachers are getting tired of managing him. They are amazing, wonderful, miracle workers who tell me all the time how much they adore Nico and are so proud of him, but I still worry that they are exhausted.

And that’s just me worrying about Nico….

If I literally listed off all I worry about in regards to my husband, father, oh and let us not forget my newest addition…my four month old son…I might stroke out.

It is an Olympic-style, mental gymnastics routine going on in my head everyday as I try to schedule work trips, make doctors’ appointments, keep track of therapy sessions, set up crockpot meals, write up grocery lists, and come up with reasons why Nico had an “off” day.

Did he not sleep well? Does something hurt him? Is he still festering over mommy scolding him for being too loud and waking his baby brother up?

And then the constant fears seep in amidst all of the above:

Will he ever freaking be able to tell me how his day was? Will he ever be able to tell me how he’s feeling? Will he ever consume more than goldfish crackers, apples, pea crisps and V8 juice? What happens when he ages out of services and is still minimally verbal? Will he live with us forever? Will his brother be ready to take over responsibility for him when his father and I no longer can?

How can I ensure I never die?

A colleague told me recently that she was very impressed with how well I had transitioned back to work after being on maternity leave for three months, especially since I have to be away from home for extended periods. I smiled and thanked her, but if she only knew that I had literally just balled my eyes out in my car stressing over whether or not my father will be able to manage both of my boys in the morning when I am gone overnight and my husband has already left for work. I am beyond grateful for my father’s help, but will it be too much for him? An infant and a child with Autism? Getting them ready and out the door by himself by 7:30 in the morning? I’m exhausted just thinking about it.

Autism has certainly turned my world upside down. It has taught me to live in the moment and not plan too far ahead. I have learned to find a silver lining in each day regardless of how trying it is. Maybe that is why my colleague was able to see that “glow” in my face when I returned to work. I am working so hard to stay positive and keep my anxiety at bay.

Autism did not make me a worrier or a control freak though. I know that I had anxiety before Autism. I would have probably been neurotic as a mom regardless of Nico’s diagnosis. But, what scares me is that Autism may continue to kick my butt and keep Xanax in my medicine cabinet for years to come. If I think about it too much I can actually feel myself gasping for air so I just try to take it one day at a time. That’s all any of us can do, right?

I have come to terms with one thing though…

Autism may be the oil and my anxiety may be the water, but Nico will always be that special elixir that emulsifies it all and makes this life of mine extraordinary because my son is extraordinary.