Tuesday, January 11, 2011

You say you want a resolution

I'm thinking of this as a follow-up to Varda's poignant, thoughtful post from yesterday.

The timing is interesting, actually, because I'd decided weeks ago on the content of my January post, but I wasn't sure about the context - about how much I would share about the whys of the post.  But - quite by serendipity - Varda has provided that context, more eloquently than I would have, right here at Hopeful Parents.

I imagine that her post is one that speaks to many of us who have children with special needs - who, in our darkest, most fearful moments are haunted by a single question:  What will happen to my child when I am not here for him?

It's a thought that had been haunting me incessantly a couple of months ago when, in an entirely different moment of serendipity, I received an e-mail from a representative from Easter Seals.  The e-mail shared the results of a study they'd done about the needs of adults with autism who have "aged out" of the system once they've turned 21 and are no longer eligible for services provided by the school system.

According to the e-mail - which included this link to a video that describes the study and features actor Joe Mantegna, who has an adult daughter with autism - Easter Seals is using the study's findings to raise public awareness about the issues that face autistic adults and their families - "including school to work transitions, employment support, and financial planning."

The e-mail also informed me that the study was "made possible by" (which, I have learned through many years of watching PBS, means "was funded by") MassMutual Financial Group.  Upon further investigation, I discovered that MassMutual Financial Group has a "Special Care Program," which connects family members with financial planners who specialize in working with special needs, to assist them in developing a Life Care Plan for their family member.  I've only started to look at their material, but so far, what I've seen has been infused with sensitivity and understanding, as well as a recognition that for parents of children with disabilities, it's scary to simply start the conversation; we fear that by saying the words out loud, we will give them form, allow them to take shape, risk that they will come to life.  By asking the questions, by making the plans, we acknowledge a reality in which we are no longer able to care for our children.  And that is a reality that, for many of us, is almost unthinkable.

Varda's post from yesterday articulated well that fear and anxiety - the one that lives just below the surface of my skin every day.  And she ended by saying "I have no answers right now, only questions."

And that brings me back to the January post I'd intended to write all along: the one in which I made a New Year's resolution.  I've never actually been big on New  Year's resolutions, publically stated or privately held.  But this year, I'm making one.  This year, I'm taking some steps in the direction of answers.  I'm taking the chance that my fears will take form, and I'm hoping that the resources I'll compile will dwarf the form they've become.

I'm going to start by looking further into the Special Care program.  And please don't take this as an endorsement - I have not yet even picked up the phone.

But I will.  This year.  I'll start.

I'm resolved.

If MOM-NOS made a second New Year's resolution, it would be to post at Mom - Not Otherwise Specified at least as much in the coming year as she did in the last - but a second resolution is simply too much for her to take on.  She thanks Varda for doing the heavy lifting in setting the context for this post, and hopes that the lifting did not impede her recovery from gall bladder surgery. 


  1. My husband and I began working with Life Planners for families with special needs children about 6 months ago. I am so very glad we did. It's not a very pleasant thought process sometimes, but it did need to be addressed. I'm relieved that we now at least have a financial plan for our kids if something happens to us. I never realized how much money it was going to take to have our daughter cared for and the steps we needed to take to make sure that our money was protected and went to help her and her brother. We also got to make out our wills and all medical and financial proxys. I feel confident that those chosen to care for our children if need be will do a great job and be fully aware of our wishes for them both. I highly recommend this process to everyone, not just parents of kids with special needs. Good luck with your research and I hope this process brings you some comfort and relief.

  2. You and Varda both hit something deep down that I've been trying to bury for a while. I'm perfecting the ostrich in the sand approach to life lately, mostly because the day-to-day gets so overwhelming that thinking ahead scares me. But you are both right that this kind of planning can't be ignored. And now it will be at the top of my to-do list. Thank you.

  3. Thanks so much for speaking so kindly of, and referencing / linking to my post from yesterday. And also for taking this idea to the next step, into that rational thinking and planning stage that is so hard to push forward into. There are just so many minefields here. To move from the paralyzed by fear to the taking action stage is so hard yet so necessary, thanks for the nudge.

  4. This is something that we have not even begun to consider, and we definitely need to do that. I think that my husband and I are going to have to start figuring these things out as well. God bless, and Happy New Year.

  5. This is the one aspect of autism that I wake up thinking about every morning, and go to bed thinking about at night. Half of conquering the fear of the unknown is just diving in and discovering as much information as you can. Thanks for reminding me it's never too early to start!

  6. Thanks for your courage. It is so important to plan for our families, and by agreeing to plan for our special needs children, parents might feel like they are throwing in the towel, admitting that their child will never get "better." But I must say, I have plenty of friends with typical kids only who choose the ostrich approach to their planning. No wills, no proxy, no nothing. Here's to facing the future head on.

  7. I'm not affiliated in any way, but I think MetLife has a program like what you speak of. Or at least that's what the ballpoint pen implies that I have laying around here somewhere...