Five Feet Away

Finding Joy, By Putting a Little Distance From the Anger.

This week, my chores for Ian included a one-hour zoom call with Ian’s teachers to discuss his progress, one hour devoted to writing up the notes on that meeting, and a one-hour phone call with a transition advisor, whom I’ll call Sara for this newsletter. Sara is a therapist for parents of special needs children, who helps guide parents through the difficult transition process. Our lawyer suggested that I reach out to Sara to see if she knew of programs in New Jersey that would be more appropriate for Ian.

Sara pointed me to a private college program and also told me to start the next level of paperwork to get access to state services. Overwhelmed for a minute, I said, “is this going to be my life? I have been thinking about making some career changes. Can I go back to the office and work full time?”

Sara exhaled. She didn’t directly answer that question. She said, “in general, children, who have parents — well, mothers, it’s always the mothers — who advocate for them full time, do better.”

I had already figured that out on my own, but it was still hard to hear a professional tell me that. My friends are presently frolicking in the Caribbean and Europe; their kids are in college or employed. They are leaning into their careers in their 50s without worries about sports schedule or college applications. I don’t get any of that.

Of course, I’m comparing myself to entitled middle class families, who have lot of entertainment and employment options for themselves and their kids. Lower income families don’t experience the joys of the empty nest. But I’m here, in the suburbs, and it’s sometimes hurts to not keep up with the Jones and their child-free homes.

Ian does have some nice options ahead of him, but it’s going to require lots of help from me to get him there. I’m going to have to “get him there” not just in terms of jumping over various academic, autistic, and professional hurdles. I also mean “getting him there” in the literal way, since his epilepsy means that he can’t drive anywhere.

Sara continued. She said that a mother can’t be a good mother, if she’s unhappy and unfulfilled. So, sometimes the mother has to put herself first. (Kris Burbank’s newsletter has awesome tips for parents of special needs kids.) So, how can I not get lost, while helping my son transtion to adulthood?

With all my responsibilities, traditional employment is still not in the cards for me. I also can’t make myself return to some of the flexible jobs that I’ve done over the years; the exploitation was ridiculous. My little side hustle, selling vintage books, is doing well, so doubling the size of that business is very doable. I have some writing projects that need to be leveled up, too.

I’m also making sure that I go for a daily run, meet good friends for drinks, and binge-watch Yellowstone with my husband in the evening. And looking around my home in a beautiful community, with my two handsome young men, I would be an idiot to not be grateful. While I don’t have the complete freedom that others have, and I’m angry at the world for inequities and injustices, my particular situation is pretty great.

My goal for this year is to hold onto the anger — I need it to fight for others. However, I want to keep that anger five feet away from me, so I don’t lose the appreciation of all the gifts in front of me.

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Me, Elsewhere

I’ve got links to good articles by others, related to education and special needs, but in the interest of keeping myself happy and healthy, I’m hitting publish on this newsletter now. I might send another newsletter with links later this week.

I posted pictures of Easter on the blog, and on Instagram. Pictures from the International Book Fair in NYC.

The Unraveling of Public Education