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.
I am on the autistic spectrum so I am glad to read this blog! I wish you and Nico all the best and I have every faith that you are doing the best for Nico!
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Katie… you are such an inspiration and hopefulness for all parents dealing with our amazing kids with special needs. Talia has not officially been diagnosed being under the spectrum as she has so many other diagnosis. But especially this last year her OCD and what I have always suspected as having autism too has come out. With all the changes that has had to happen in her life this last year and especially snatched away suddenly we have dealt with more episodes of whaling and distraught from her since they are so sudden and disrupt “the plan” day in and day out. She looks to me and expects me to fix it all but I can’t cause it is out of my control. Reading your blogs are so helpful to know I’m not failing her. But it breaks my heart knowing I can’t “Fix” all that is wrong that is making her hurt. I thank God everyday that I have my husband who specializes with special needs kids/people. He has taught me so much about how to redirect and comfort when those episodes happen. You give me understanding and strength and hope to help her cope when life doesn’t go as planned. You are truly an amazing human being! And Nico is absolutely beautiful and blessing to all in his life. I love and miss you all so very much. 💖
Love Always,
Kim
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