I can’t believe it’s over. I’m sitting here in my backyard and it’s filled with forks and cups, ribbons and dead balloons. The Party is over! We did it Nicholas, you graduated college. I am so proud my heart feels as though it could explode. You beat the odds. You would never say it, but I know it hasn’t been easy. From moving to Ardsley at 7 years old, leaving all your friends behind, so we could move to a better school district for your brother. To all the nights you had to study at the library because it would be too crazy at home. Joey, your beautiful brother with severe autism; would make sounds, come into your room, shut off your lights and keep you from concentrating. I also know of all the times you wanted to stay at school to just let off some steam—but you came home. You were needed to watch Joey, so you were here. You made the hard decisions and gracefully made it all work. And as my mom always said… if it’s easy, it’s probably wrong and if it’s hard—it’s probably right. So, it was hard, but – this achievement is oooh so right.
These last four years you worked part-time, went to school full time and you still made time. Every Tuesday you took time to volunteer feeding the homeless; even when your scholarship hours were met you never missed a week. You made time for the special needs kids at JCC on Sundays, so their families could have a break. You made time to watch Joey so your dad and I can go through our mid-life crisis and go dancing now and then. You made time for your girlfriend and friends when they needed you. I hope my beautiful boy, you realize now, – this is your time! Ever since you were a little boy, you just wanted to make things right and that’s what you will do! Westchester ARC is lucky to have you. I know great things are in your future. You will make a difference and make things right. And my heart is fill with happiness and pride.
I can start to let go… but then I stop, I can hear my heart beating. It’s not that easy –
See with Nick things always seem to be a straight path… We all leaned forward, buckled up and watched it happen. Yes, we’d guide and support, but it’s clear, the progression is steady and upward. But it’s not quite as straight forward with autism. Not for my Joey or for us.
Joey, as you start your final year of Ardsley High School we are so incredibly proud of you too. But there is no letting go for you. Yes, you have come so far, from not wearing clothes and running away to now speaking with sign language and staying dressed. You follow directions and make beautiful eye contact, but we still have so much to conquer. There is no letting go. Joey, your soul maybe the most perfect, sweetest soul ever created. You are so innocent and trusting. I love the way you use your tech device to tell me you want a soda, even at 6am! You make me laugh when you are so excited to eat a cupcake that’s still warm from the oven.
I know in my heart you want to be an average 20 year old. Have a girlfriend, come home late, and try a beer. Instead the thief of autism took those. So we stay in silence, and we don’t let go.
Our road with Joey is different, not as simple – definitely harder, but in some ways a little more…like magic. This summer Joey you have decided to take 5 steps forward. You now want to choose where and when we go out and what to eat, not just accepting of what is put in front of you. And vacation! Now that you got the hang of time, well – why would we spend our time doing anything else? We can go on VACATION! And boy oh boy are you right!! But somehow when you got the vacation memo you didn’t get the finance one. So, it’s complicated and Joey makes 5 steps forward and autism takes 4 steps back. So we struggle as we watch you unfold and enjoy life’s pure magic…. but with a large side order of autism’s frustration.
We’ve had to patiently help you learn to cope with the knowledge of time and choices and balance it with reality. Not easy for a guy with autism. But with God’s grace and using every resource our family has been blessed with, we are figuring it out and thankfully you are gaining each step back that autism stole once again.
So Joey, you have begun to slowly accept that sometimes we have to do what we don’t want to. But now with the joy of knowing you have desires and wishes and in some tiny way that makes my heart sing. Such a simple thing that most take for granted. A wish. But not to us, because now we get the beauty of seeing you wish for something and at times able to make it come true. How lucky can a mom get? Wish big Joey!
It’s a different road with you Joey, even when you make improvement we can’t let go. We move forward but we continue this journey ahead of us – together. Moving on, for you and for us it’s harder, it’s often not fair and it’s far from letting go.
So we stand here, at a crossroads. Letting go and holding on.
And then thankfully like a wave, it hits me, it’s going to be okay, it has to be. Joey you have some amazing skills and we have learned time and time again, that as long as we don’t give up, we can make it better. So even when the school bus stops coming every day, I will find a way to keep your life fulfilled and happy. I have to, God gave me the gift of your heart to hold. So, I take a breath and find strength. There is no option here and there is no letting go.
I marvel at the man my son Nicholas is and enjoy the freedom and power of his youth. I love his confidence and passion and know he will make a difference in people lives.
For my Joey it’s simpler, but yet just as important, he’s made a difference in our lives. Our little family. We have gained patience and understanding. We have learned what a gift a wish is. We have learned unconditional love and hope. Joey you have given us without a doubt hope. We know hope is the most important thing anyone could have or give. Now we have tomorrow.
So, I guess it’s time to clean up. I call Joey to come help me, he comes willingly and smiling. We start picking things up together. Joey signs for donut, yes, after this we will go get a donut. It’s a deal. He grins ear to ear and continues.
I giggle and think to myself – so I guess we are blessed, blessed to let go and maybe, just maybe if you look a little closer, blessed to hold on.