When You're Not a Special Needs Parent and Disaster Almost Makes You One
by Bonni Berger
photo by engin akyurt@enginakyurt
Last week, we explored at the reality of Letters of Intent and explained why the LOI will fail your child with special needs. An LOI won't simply fall short; it will FAIL to protect your child and FAIL to provide seamless, expert care for your child when you can't be there. This week, we dive deeply into this issue with a post from someone who was nearly and suddenly responsible for the care of a person on the autism spectrum. Bonni Berger describes how she would be able to continue care for her nephew if she found himself in that situation. - Keri Horon
My sister, several states away, texted that her husband was on his way to the hospital after having been diagnosed with COVID-19. Days later, she texted again saying that she, too, tested positive but was staying home. Her daughter was an emotional wreck and someone had to be home with her son, who is on the spectrum.
It wasn’t long before my brother-in-law took a turn for the worst and was headed to the ICU to be ventilated. Not knowing how her own illness would progress, my sister told me where I would find her will and other important papers pertaining to my nephew. However surreal this felt, this was happening. We already knew people who died from this illness.
The “what-ifs” swirled inside my head.
My niece and nephew are both in their twenties. Is my niece her brother’s guardian? Am I? What does that even mean? Would it be in my nephew’s best interest to move him to another state? He can’t live alone. Should I look for a group home? Is that possible? If it was, why is he living with his parents? Should he live with me? I don’t really know him. What is he capable of? What does he need? What would I need? Will he regress? What happens if I get sick? What will happen to my life? The questions were relentless.
I think I saw my nephew once in the past three years. He writes me an annual two sentence “thank you” note after receiving his birthday present in the mail. He doesn’t like to socialize, preferring to read a book when in the company of others. He doesn’t like to answer questions about himself, preferring to talk about his latest obsession. When I ask if I can hug him, he politely says, “I’d rather you didn’t.” I know very little about him or his hopes for his life.
While in the throes of this health crisis, I was busy trying to keep my sister and niece calm. I couldn’t travel to their state, much less enter their home. I sent packages of food and cleaning supplies. We texted and video-chatted to stay informed and to help keep spirits up. But in the back of my mind, I kept returning to my list of “what-ifs.”
I may be the kid-sister, but I’m not getting any younger. What happens if I’m not here for my nephew or to help my niece manage his care? What happens if I am here but not physically capable? We need to know the plan for his care and how to enact it. How do we scaffold processing a traumatic life change?
Which doctors or educational professionals should we talk to? Where are those names and phone numbers? What are typical behaviors we should expect (so we know what is atypical)? How much of a role should my nephew have in making decisions about his own life?
Thankfully, my sister has fully recovered. After many scary months in the hospital and then rehab, my brother-in-law has made a miraculous recovery as well. However, life is not back to normal.
It may take many more months before a palatable “normal” arrives, so I need to start asking those “what-if” questions now, while my sister and brother-in-law are here and healthy. This has to happen for me and for whomever else needs those answers.
Our reality, months ago, was far worse than the prospect of having this uncomfortable or even painful conversation. My sister may not have all the answers. But I have even less. It’s time for me to make that call.
- Bonni Berger
Bonni is a postpartum doula, lactation counselor, and freelance writer. She can be found in the suburbs of Washington D.C. and at www.bethesdadoula.com where she is loving the fourth trimester alongside her new-mom clients.
More from Keri Horon, Vest Success Manager:
Bonni faced a situation far-too-common in today's world. In the past, perhaps even earlier this year, we all have told ourselves it won't happen to me. We think we have more time. The events and subsequent circumstances facing us in 2020 should have awakened all of us to a brutal truth; there is no time, and it will happen to you. Something will.
And if you are a parent of a child with special needs, you simply must stop and ask yourself: am I doing all I can to ensure the ongoing, targeted, critical care of my child? Will s/he be alright (better than alright) if I can no longer provide the care s/he is used to?
This is why I created a Vest from my son. Because now I know that if a disaster takes me and his Dad, all the knowledge we have about him is saved, and will be transferred to those we trust for his continuing care. After years of searching for the right solution, and making many false starts (e.g, a Letter of Intent), I discovered that Vest is the only fully comprehensive way to make sure that all the knowledge I have about my precious, complex son gets saved and transferred to someone I trust for his continuing care. And I want you all to know that I signed up with Vest long before I started working with the Vest Life company.
As a special needs Mom, and a Vest parent, I know from personal experience that Vest will help you make sure that your sister or brother or other key family member will know what to do in a turbulent world where sudden disaster is no longer just a "won't happen to me" fantasy. As we are all learning, disaster is oh so real and looming.
Learn from Bonni, and others who have faced the fear of wondering what to do for someone with special needs. If you have a friend or family member who is a parent of a child with special needsl, please share this article and encourage them to learn more about Vest. Thank you. -KH
