Feb 24, 2014 0 Share

The Umbilical Cord-ectomy

Masked surgeons in operating room looking down at camera.

First published January 16, 2012.

Brrrriiiiinnnngggg. There goes the alarm clock. Sniff, sniff ... Yep, that's the coffee brewing. Okay parents, it's time to wake up and inhale deeply …

This column is based on some hard truths. Primarily, the need for a procedure I like to call an umbilical cord-ectomy: the severing of the lifeline between parents and their maturing child that happens after high school. This can be a very pricey procedure, but it doesn't need to be. Unlike other surgeries, this is actually one you can try at home. Many of the providers of postsecondary education options for the ASD population seem to have mistakenly assumed that the one percent of the population with ASD is the same one percent that has all our nation's wealth. (If you happen to be in the part of the Venn diagram that intersects both of these populations, you are excused from reading further.) 

Have you done internet research on the postsecondary options for an ASD student? Have you felt your heart beat a little faster and a warm glow come over as you envision a lovely setting, helpful supports, and the idea of the students gaining independence and employable skills?  Have you clicked on the fee schedule section of the websites? Did you then schedule an appointment with your bank manager and investigate the going rate for donating various body parts?

I know where you're at. I'm in the trenches with my own son as postsecondary needs loom in the not-too-distant future, and I've felt that rush of adrenaline when a program website wraps its arms around me. I've also been employed as an Independent Living Skills Instructor, and in the trenches as a foot solider in a postsecondary program. What struck me in the employee trench is how much of what I was teaching my students could've easily been covered at home, but clearly wasn't. All of my students were fully capable of doing their own laundry, cleaning a bathroom, and preparing simple meals. But the vast majority of my students came to the program having never tried these tasks. Come on parents! Stop assuming a skill isn't there. How much money are you willing to spend to avoid a little parenting pressure? Don't worry. You'll have plenty of opportunities to spend that money on your student over the coming decades. A DIY approach to umbilical cord-ectomy is the way to go.

The most important thing parents need to keep in mind when considering spending the amount of money many of these programs charge is what to expect at the conclusion of the program. Last summer, I attended an open house for a mixed/hybrid model program at a local college. I had found the website for this program months before the open house, and was thinking this would be a great experience for some students. But as I sat in a roomful of parents coming from various locales, the questions they asked surprised me: Will she be able to take art? Where will they grocery shop? How much spending money will he need each week? And then I asked: What do most of your students do upon completion of your program? The answer: Most go back home and live with their parents. And this answer seemed to be of no consequence to the other parents in the room. I'm sorry, but why would I want to spend over $200,000 to have my child come back home? Now if the answer had been: Most go on to live independently and are employed, either part-time or full-time, then Yay! Only one graduate of this program had achieved that scenario. Since I'm wearing my naysayer hat, I'll go ahead and say this: I would venture to guess that the one independent employed graduate could have achieved that status for less than $200,000.

Parents wake up and rise up! Start your own Occupy Independence movement! Pitch a tent in your son's room until that room gets clean. March around your kitchen until your daughter learns to make her own grilled cheese sandwich. You can do this. And, more importantly, your kids can too. And maybe, just maybe, programs will start to emerge with truly meaningful outcomes.