| Musings |

Not Special    

I think we’re ready for the next step: de-specializing special needs

When I was a kid, I read My Special Brother. It was a groundbreaking book at the time, normalizing Down’s syndrome, and destigmatizing the experiences of special-needs families. I remember wishing that I, too, would have a brother like that, who would bring so much love and joy.

Well, Hashem in His infinite wisdom decided to gift us with a child who has special needs, and my perspective has shifted. I think it’s great that in the past 35 years we’ve destigmatized the special-needs experience. Now, I think we’re ready for the next step: de-specializing special needs.

The world of special needs is filled with euphemisms. My son has autism spectrum disorder (Asperger’s for us lay people) and therefore looks relatively typical to the untrained eye. It’s both a blessing and a curse.

It doesn’t feel very special to realize that finding a yeshivah anywhere in the entire United States (or probably the world) that is truly designed to meet our son’s needs — with the mental-health staff and training to provide the behavioral modification and social skills training that are necessary for his success — is like trying to find the proverbial needle in a haystack. And even if  we found such a yeshivah, he’d probably refuse to go, because he thinks he’s too mainstream for that. So how can this kid succeed? We’re his  parents, and we think we know exactly what he needs, but we still can’t handle those needs most days of the week.

The extreme stubbornness, the inability to see another perspective, the total lack of time-management skills, the black-and-white thinking in which he’s always right and everyone else wrong… these don’t feel particularly special.

It doesn’t feel very special when every few months it all just feels like too much, and I start frantically googling things like “Jewish boot camp” and “military schools for teens.” When I decide that actually, no, I am not the right mother for this kid, and I hereby give up. When I lose it and say things to him that I would never confess in writing, even under a pseudonym.

Because it’s all fear, you see. The frustration comes from fear that he won’t become a successful adult, that no one will like him, that he won’t be able to hold down a job or find a wife or be a father, never mind a good one. And frustration that it’s my job to teach him those things but I can’t, because I’m exhausted, because I feel like I’ve been building a pyramid on quicksand and I’m done, and it feels so good to yell at him because finally I have someone to blame.

Then, of course, I’m consumed with guilt and tears and regret and remind myself that I can only change myself, not him. And that I’m behaving like an overgrown toddler; just look at me having a full-blown tantrum over here. And I worry more because maybe I’m traumatizing him for life and of course all I ever wanted was to be a good mother, and if I’m not that, then who am I?

But I am a good mother. I know I am. I’m just at the very limits of human endurance. I do my best for a while, and then the cycle starts again: fear, frustration, fury, blame, guilt, regret, repeat.

I’m coming in for a landing and I know the script: I’m supposed to end on a note of hope. Well, I’m sorry, dear reader, but this is the new kind of writing about special needs. It’s not sanitized and it’s not pretty. My life does not have a lovely bow to tie up all the loose ends.

The most I can hope for is that I’ll be able to enjoy the bits and pieces of the cycle where I remember the truth: He’s trying his best. I’m trying my best. And maybe that’s the happiest ending I can hope for right now.


(Originally featured in Family First, Issue 822)

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