Millie Vicky Jean

INCLUDEnyc Voices

Lori Alfonso Gennarose

My son is a quasi-obnoxious tween. And I’m thrilled about it.

This past weekend, my family attended my two nieces’ joint Bat Mitzvah. I was nervous as heck leading up to it. I often found myself obsessing about how the day would go for my son Jack, and what it would be like for both my partner and myself.

As a mom of a 12-year-old boy who is non-verbal, has serious sensory issues, is hormonally exploding, and who LOVES the “honies,” I was terrified. How would he deal in an environment with super loud music and 300 people? How he would communicate with and be understood by people who don’t know him?

I played out a million scenarios in my mind.

What would happen if Jack’s hands or body invaded people’s personal space? If he insisted on coming with us when it came time for me and my partner’s tiny responsibility leading the service? What if he took it upon himself to blow out all the candles on the celebratory cake while all 600 eyes were on us as we lit a party candle together with the girls?

I also worried about the possibility that he would withdraw from certain social situations when they became too hard for him, and cling to us, like he has before, as a result of his frustration communicating. 

What if he didn’t feel included? What if people ignored him because they didn’t know how to act around him? What if I lost my cool after being hurt or frustrated by the many challenges that come with coping in these types of environments? What if all three of us felt alone dealing with this while being in a room full of people? What if my partner and I started fighting like we sometimes do when faced with parenting situations this intense?

But, I was also acutely aware of the need for us to hold our “stuff” together on this day, and not to be “helicopter” parents. Because intellectually, I know Jack is entitled to the same dignity and independence as other kids his age who don’t face the same challenges.

I also know that, for Jack, there is tremendous value in the freedom to be himself and to come and go as he’d like, so that he can feel good about himself, and trust his instincts in the future.

But emotionally, nothing scares me more than not knowing where Jack is physically located at all times, or knowing whom he is with. I just can’t shake the horrible thought (and very real statistic) that shows that people with developmental and intellectual disabilities are abused at some point in their lives.

So I’m thrilled to report that this is how the event went for Jack and us:

  • Jack wanted none of our business
  • Jack hung out with his fantastic older and younger boy cousins -- who were thrilled to be with him
  • Jack danced for hours with anyone and everyone
  • Jack made multiple attempts to try and pick up some “honies” – not talking like the rest of us did not get in his way whatsoever 
  • We were surrounded by love 
  • My partner and I got to enjoy this special day in a very unique way for us, which was outside our usual experience being “special needs parents”
  • It was a real treat to have Jack treat us the same way as most “typically” developing quasi-obnoxious tweens

Most of all, this experience, for me, once again confirmed that Jack’s going to be more than okay later on in his life. Because he is already more than just okay right now!

#lovemyjack #INCLUDEnyc

- Lori

Follow Lori on twitter: @Podvesker