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It seems fitting that I started this post on July 4 th . What better way to bring forth the Spirit of Independence than to write about our children as they approach young adulthood and begin the journey to embrace the many freedoms of a life better planned and imagined.
As a mom of triplets (one with Autism), I see clearly what’s at stake for parents and caregivers who must plan for children with disabilities versus neuro-typical kids who are technically independent at 18 years old. Nowhere in all my imagination did I ever consider when holding my newborn son that one day I would have to also develop a detailed life plan for his adult journey.
Yet here we are, a quick 19 years later and the path is clear. While my two neurotypicals are
venturing off into the wide world, my other son is living life with no idea, or very little, of all there is to do to make provisions for him into his golden years and not to mention my own!
What adds exponentially is that over the last twenty years since “Autism” has become a household word, our children’s medical, educational, and community needs have far outpaced that of needs-based public benefits. Our children are aging into systems that have us all vying for bottom of the barrel services and then, if all this weren’t enough, add Covid!
Back in 2014, CNN reported that most people spend more time purchasing a car or planning a vacation, than they do researching their financial future. When I first read this, I thought “Well those things are obviously more fun.” I mean, most of us would rather have teeth pulled than come face to face with our long-term finances and the plethora of decisions that make up life strategy. As my son has grown, CNN’s findings have echoed in the recesses of my mind, as my time and energy were consumed with all the needs raising multiples. Many days I was lucky to get a shower or full night’s sleep.
Still knowing this, I’m not happy that I didn’t carve out just a bit more time to be just a bit further along on my son’s life planning. Turning it around mentally, I now embrace the mantra “any plan is better than no plan” and I can prosper, even at this late date, if I chunk it down.
Chunk Down
Chunking is a key practice that helps people break down something larger and overwhelming into pieces of information that are easier to process. It allows us to get more detail by filling in the gaps of the larger picture versus taking it all on Actioning this simple practice can go a long way to moving the needle.
Any plan is better than no plan at once. Using chunk down, a person would group together like items, so they are more manageable, thus avoiding the stress that comes from big questions like “how am I ever going to meet my child’s life long needs?” I’m here to tell you, you can and you will.
This well-known metaphor teaches us that goals which seem formidable, or even impossible, can be accomplished by taking smaller steps. If you can embrace this mindset along with chunking down, you will see that accomplishing your child’s life plan isn’t as hard as it feels.
The below table provides a general overview of the items you will need to consider when planning. The trick… “low-hanging fruit.” What does that mean? Low-hanging fruit is the easy stuff. It is the items you already know or have in place. So when you start to fill in the information below, first write in what you already have; the easy stuff. Then you’ll be left with a less daunting list; a patchwork of to-dos that you can begin to systematically complete. Some information will require research; maybe you watch a few You Tube videos or post a question in a Facebook group.
Other items will require you set up accounts or apply for services. And some items, you will just have to wait until a direction presents itself as your child grows and matures. I can promise you this, there is nothing involved with your child’s life plan that you cannot resolve. And if you don’t believe that, then at least believe that some plan is better than no plan. Let’s take a look.
The resources and programs you have at your disposal are often state-based and unique to your family’s circumstances and contributions. Once you fill in the low hanging fruit and perhaps identify and/or start on a few next steps, it is recommended you consult an advisor (financial, legal, navigator, case manager, etc.) who has specialized knowledge regarding your approach.
If you’d like support chunking do wn or locating low and no cost resources.
In sum, it is estimated that over 75% of disabled adults live at home with aging parents; most over 60 years old. And over half of these adults require 40+ hours per week of caregiving. Moving the needle on planning for the future is tricky because most of us don’t fix what isn’t broken which in this case is when the parent or caregiver is still in good health. It is only when illness or unexpected circumstance strikes that the situation turns critical.
Given all the preparation needed, wouldn’t you prefer to at least start the process? It is when you take those first few steps, your journey will naturally progress to fulfilling the dreams of the prosperous and healthy life you want for your child.
References
“Workers spend more time planning vacation than retirement, by Melanie Hicken, @melhicken; August 19, 2014:
“When Letting Go Is Tough: How to Emotionally Detach from Someone,” psychcentral.com;
"Focus Beats Goal Setting,” by Robert Fagan; http://theaposition.com
“The Only Way to Eat an Elephant,” by Ekua Hagan; https://www.psychologytoday.com/us/blog/mindfully-present-fully-
alive/201804/the-only-way-eat-elephant, April 24, 2018.
https://www.elizabethjlarson.com, Special Needs Advanced Planning for Today and Tomorrow, July 29, 2022