parenting · special needs parenting

The Loneliness, Do you See it?

A couple of my friends shared this post this morning. Take a minute and read the texts that special needs parents would like to get.

There’s a theme there, do you see it? They’ve been left behind. They feel invisible. They’re lonely and overwhelmed.

It’s pretty much accepted in special needs circles, our families get left behind by most of our friends. We’re the ones watching the world go by and wondering if everyone has forgotten we’re here. The people we hung out with before special needs entered our world went on about their normal lives and we couldn’t keep up.

I suspect we ghosted them or RSVP’d “no” a few too many times. Do they know it was unavoidable? That we wanted to go but couldn’t find child care? That it’s hard to get out these days? It sounds selfish, but we need our friends to bear with us a little bit. Consider what it’s like if your child has gotten mono and you have had to slow down and tuck in for a season to care for them, maybe that’s a good comparison, except it isn’t just a season for us, it’s ongoing. It’s hard to see everyone get together without us. I wish I had the energy to try harder, and I wish you cared enough to slow down and include us. Or just show up once in awhile.

It’s tempting to just write it off, suggesting that it’s your loss, or that we must have never really been friends anyway. But I did think we were friends, I really did. I think that if your child had special needs and mine didn’t that I would have stood by you. I thought you cared about our family, and when we went through our hardest times, the test was too much for the friendship to bear. It’s a loss for me, a big one, though you don’t seem to feel the same. It hurts.

I usually focus on the ones who stayed. The friends who showed up instead of stepped out. The ones whose steadfastness has exceeded what we ever could have asked for. Those friends who do show up with coffee and a smile, the ones who have carved out time for us when we couldn’t keep up, who make room in your lives no matter what. We know it’s hard to fit us in, and we know it takes effort to include us, but you always do. You always do.

parenting · special needs parenting

Why Is a Homecoming Date a Headline?

This is Alex.

He’s a pretty cool kid if I do say so myself. He is clever, empathetic, funny and just plain sweet.

Alex is 15 years old and a freshman in high school. He has loads of friends, even though we just moved to a new district. People like him, which makes sense, he is a likeable person.

Some time in the next 4 years, I think he would totally dig going to a formal high school dance. He enjoys socializing and dancing, I think he would have a blast. Whether he goes stag or has a date, he would be in for a great night.

But when I think of Homecoming (or Prom), there’s a bit of trepidation. Alex has tons of friends, both in in his special education classes and in the school in general. What if a young lady asks him to the dance? And what if it happens to be a young lady without a disability? And what if the local news caught wind of it and decided that they need a feel good piece to round out their broadcast?

I don’t want my son to be a feel good news piece.

And I don’t want him to be asked to a dance by someone with secret hopes being a the local hero for the day.

I get it, it’s moving. Perhaps it seems like a Cinderella story. But there’s a term for stories that use people with disabilities to play the heartstrings of others; it’s called inspiration porn.

Just like the standard type of porn, you know it when you see it.

And just like the standard type of porn, the subject is objectified in order for other people to get off.

If Alex does end up going to Homecoming, why can’t it be just like every other student in the high school?

Is it because we assume that anyone who would ask him must be some sort of saint? Really? Only a saint would want to get dressed up and spend an evening out with him?

Ouch.

But what other reason would there be for news coverage of two high school students attending a formal dance together?

So please, think about it. Put your child or yourself in those shoes. How would you feel if your high school student got on the news for getting a date for Homecoming? Isn’t that something most students take for granted? Isn’t that a normal rite of passage?

I plead with you, use your critical thinking skills. The next time you see that feel good headline, picture your child as the person whose date to the dance is such a novelty that it’s considered newsworthy. Then pause and reflect on whether that’s something we should embrace as a society.

I don’t think it is.

grief · parenting

A Grief Observed

It’s been almost 2 months.

Living through child loss for 2 months feels simultaneously like no time at all and like an eternity.

I keep chasing the same thoughts around like a dust devil until it disappears. Then awhile later it blows back up and spins in circles until it gives up again. I never catch it. It never stops returning.

I go back in time reviewing all of the interactions. Could I change one and have a different outcome? After chasing them all down I only return even more unsure.

If I could just hug you, and shake you, then hug you again. I’d probably yell for good measure, then another hug.

But that’s not an option anymore.

I think I’m stuck in the anger stage of grief. Anger at you, anger at me, and especially at all the shit that happened to you; at the broken road you were put on, over which none of us had control.

My head knows there’s nothing I could have done, but my heart won’t let it go.

Maybe I should be looking forward to a heavenly reunion, but there’s too much bitter in that bittersweet thought.

I hope that the peace which always eluded you is now yours. That’s my only comfort.

I hope that the trauma that burdened you like a mountainous backpack has been cast off and into an endless abyss where it’s weight will never crush you again.

Is it too late to remind you that I love you, that you are worthy and deserving of love? Perhaps you know that now in a way that was impossible to grasp when you were here.

I miss you. I always will.