Vicki Larson: When your child falls far from the tree

Marin Independent Journal - 9/19/2022

Sep. 19—My friend needs a million dollars.

Honestly, who doesn't?

But it isn't really for her, it's for others who are like her 24-year-old son Richard, who was born with Prader-Willi Syndrome, a rare, incurable genetic disorder that affects about 1 in 12,000 to 15,000 people, as well as autism.

Granted, that's not a lot of people. But each one of them is someone's beloved child. And while many of their basic needs are like anyone else's — love, shelter, safety, nourishment — their most-urgent need, related to their inability to feel sated when eating leading to numerous potentially life-threatening issues unless constantly watched, requires 24/7 supervision. And that, as you can imagine, does not come cheap.

It's not something most parents-to-be or new parents think about. I didn't. Like most new moms, the first reaction when my sons were born was — 10 fingers? 10 toes? All's good. And yet there's so much that can happen.

I am reminded of a quote from the movie "Forrest Gump" — "My mama always said life is like a box of chocolates, you never know what you're going to get." I am reminded of a quote by Andrew Solomon in his fascinating book, "Far From the Tree: Parents, Children, and the Search for Identity" — "Parenthood abruptly catapults us into a permanent relationship with a stranger, and the more alien the stranger, the stronger the whiff of negativity. We depend on the guarantee in our children's faces that we will not die. Children whose defining quality annihilates that fantasy of immortality are a particular insult; we must love them for themselves, and not for the best of ourselves in them, and that is a great deal harder to do. Loving our own children is an exercise for the imagination."

I guess I was lucky. One son had a few challenges — I called him the Acronym Kid because of his OCD, ADD and a few other acronymic special needs (they tend to bunch together). It required some therapies and lots of testing — these were also not cheap — and individualized education plans. Thankfully, I had support and information from Novato's Matrix Parent Network and Resource Center, a parent-founded and run nonprofit that provides free resources for parents whose children have diverse abilities and needs.

There was fear early on that the other son had apraxia, a neurological condition that can affect movement and speech, but thankfully all he needed was a year or so of speech therapy.

Still, it created a stress and an exhaustion in my household that my friends whose children were considered "normal" would never experience or quite understand.

It's hard to know how many children in Marin have have similar issues, but with 3 million children in the United States with a disability and 15 million children with a rare disease, it's likely we have our share. I think of parents like my friend who have to figure out how to keep their child safe and cared for, especially when they're no longer alive to do that themselves. I think of parents who have to scramble for money in hopes of enticing biotech businesses to develop treatments, like Rosalyn and Justin Porcano, of San Rafael, whose daughter was born in 2018 with Usher syndrome, type 1, and quickly lost her hearing and is slowly losing her eyesight, or parents who are forming their own.

Parenting is never easy, and the pandemic has made it more challenging than ever. Parenting a child with a rare disease or special needs adds an extra layer of financial, emotional and often physical stress. And there are few if any safety nets for those parents and their children.

Can we agree that it's not cheap to raise a child under any circumstance? It's estimated that the cost of raising a child through high school — not college — today will cost more than $300,000, about $18,271 a year. Admittedly, that includes some perhaps unnecessary expenses; not every child needs sports equipment or dance lessons. Still, that amount does not take into account the needs of children like Richard, who has two caregivers to care for him 24/7, or children who require expensive medical procedures or specialized educational needs.

And while most parents don't necessarily worry about what will happen to their children once they are dead and gone, parents like my friend must. Many group homes that house people like Richard are privately owned, and the owners can and often do sell, displacing their special needs residents at any time.

My friend is lucky, though. She and her husband have a good friend — Elvis Costello — who performs at their annual fundraiser that has helped them be able go far toward purchasing, upgrading and eventually staffing quality and well-paid caregivers so they can house four people with Prader-Willi Syndrome in Novato. They will never be displaced. They will be safe and cared for once their parents are dead. They will always have a place to call home.

Still, she admits, it's exhausting and often depressing.

My friend needs a million dollars. There are millions of other parents who need it, too.

Vicki Larson's So It Goes opinion column runs every other week. Contact her at vlarson@marinij.com and follow her on Twitter at OMG Chronicles

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