Celebration

We had a stellar day and night tonight! I am on a high!

Today was a day where I sat back and marveled at my son and how well he did with every experience he encountered. Autism did not take us down today!

I gave my husband the biggest smooch because I am high on life! He didn’t even know what was coming…lol.

Today, my Nico had the time of his life with his family throughout the WHOLE day. That is HUGE! He didn’t have one breakdown! Not one moment of agitation or distress. My husband and I got to experience what it is like to have a child that can move from one event to the next without a ton of coaching, prepping, or Xanax (for his parents).

I knew waking up today that we were taking a big risk thinking we were gonna survive the day with a one month old and Nico where we headed downtown, checked into our hotel, went to lunch, walked around, and then sat for a holiday lights parade without a major meltdown. I figured we would make it to the hotel and be lucky if we could enjoy half of a lunch excursion, but never in my wildest dreams did I think my Nico would be hanging with his cousins and family until 9pm at night without one meltdown when we started our day at 8am.

There were tons of people all around, lots of transitions from new place to new place, and more than enough overstimulation…think lots of flashing lights, gusts of wind, and tons of walking, but not once did Nico falter.

I was prepared to drop everything and head to the safety of our hotel room at any minute, but my superhero son proved to me today that he has it all under control.

My husband and I got to enjoy a phenomenal day AND night out with both of our sons (THANK GOD our one month old seems like the perfect child so far) where we got to eat, drink, laugh, and RELAX with our family without one meltdown.

I cried tonight, but not because I was exhausted or stressed. I cried because I was unbelievably proud of Nico. He impressed the hell out of me and proved to me once again that Autism will never be one dimensional or predictable.

Nico showed me that he is more in control than I give him credit for. He can manage himself and be in control of his own emotions.

On this Thanksgiving weekend, Nico showed me what it truly means to be thankful. Nico is who his father and I thank God for everyday because he teaches us what it means to appreciate the good things in life. To stop and appreciate how blessed we are to have such a charmed life. He keeps us on our toes, but that’s life. No one said it was going to be easy. We may have our hands full with two children now, but we wouldn’t want it any other way.

And, to top it all off, we dined on steak and champagne tonight! Say what?!

Today was a day to prove to all other Autism parents out there that our kids will never cease to amaze us. So, take the risk! Take that trip! Make that dinner reservation at the fancy restaurant!

I hope there are more days like this to come for all of us. We deserve them!

Reality Check

Today I was shaken by Autism. Nothing extraordinary happened with Nico. He didn’t have too rough of a day, but it was enough to ground me back in reality. I think I had been living a bit in my idealistic universe, which I try to live in more and more everyday, but when a day like today shows up I have to check myself.

I know Nico has Autism. It is part of who he is. But, over these last few months I have really seen major growth. Maybe it’s because he is in Kindergarten and that is a HUGE milestone for us or maybe it’s because he seems to be communicating better. Whatever it is though, I have seen him grow a bit more.

But then he interacts with neurotypical children his age and I see the stark contrast. I see how he is lagging and it rocks me to my core. For all of his amazing attributes and intelligence, to the naked eye, it may go unseen because it is not quite typical and typical is what makes sense to the majority.

He can’t find words to tell someone he isn’t ready to play something else or that he would really love for his friends and family to all just stay seated on the couch together because that is what brings him such joy. He can’t quite communicate that he would love someone to follow his lead or play with what he finds enjoyable. And because he can’t find the words….he hits. I hate that he hits although I know why he does it. He can’t communicate his frustration, disappointment, or sadness.

Just saying aloud that he hits makes me already feel judged. Makes me feel embarrassed. Kids are not supposed to hit.

It breaks my heart and that is when I slither away to the bathroom and silently cry for my son.

How unbelievably frustrating it must be to know that you want to say something and literally cannot get it out. To feel trapped within yourself. Hitting becomes his only means of communication. I don’t condone it, but I can empathize so deeply. I try not to make excuses, but I feel myself getting overprotective of Nico when it happens and I don’t always want to discipline him as much as just hug him tightly.

I look at his peers, his cousins, his friends (the few he has…thank goodness for his cousins) and I catch myself feeling envious because they are living typical lives, behaving age-appropriately, enjoying all sorts of wonderful experiences. I want that so badly for Nico.

Yes, Nico does find enjoyment in activities that others engage in. I don’t hold back on going out and trying new things with Nico, but it is a major risk each time we do it. It just takes one person to strike up a conversation which Nico cannot contribute to, one shift in activities without a slow transition, or one moment that strikes a nerve with him and a meltdown ensues. Others begin to stare. Children back away. Hitting may follow. And, I am left to grab Nico and usher him away before it becomes too much for either of us to bear.

I panicked today. Lost my breath for a second when I envisioned Nico never fully communicating. Struggling to connect to others. And then the questions came flooding in: Will he go to college? Will he be able to find and keep a job? Will he have friends ( outside of his cousins who are friends by default thank goodness)? Will he find someone to love and who will love him back? Will others avoid inviting us out because they don’t want to deal with a child with Autism? Will we ever just be able to go somewhere with me not having a pit in my stomach over the fact that it could end badly in a heartbeat?

I struggled today to hold in my tears. I became anxious and irritable. I was oversensitive if anyone wanted to correct him. I just wanted to grab him, pull him into my bedroom, close the door, and hold him forever. My isolation reflex kicks in. I want to just stay in my house and protect Nico from the outside world.

Autism got the best of me today. I grieved today over the childhood I envisioned my son having as opposed to the one he has.

I know tomorrow is a new day and I will quickly rebound, but today, amidst all of the little breakdowns and struggles, I wished Nico didn’t have Autism. I was tired of Autism today.

I wanted a different reality today.