Dear Special Needs Parent: You're Doing a Good Job

Photo by DenKuvaiev/iStock / Getty Images

Photo by DenKuvaiev/iStock / Getty Images

“You’re doing a good job.”

To many of us, this is a fairly average reassurance, something that goes in one ear and out the other. We’re in a time of bigger, better faster, and all the risks that come along with it. Doing a good job can come across like “good enough.” 

As an estate planning attorney, I often have to guide my clients through complex decisions that squeeze the most out of the available options, so they can continue to live a free and amazing life knowing the most important people in their lives are well protected. 

With assets they’ve worked hard to earn and children they’ve worked hard to provide for and, just doing a “good job” wouldn’t get me very far in my chosen profession. And I’ve spent the last 35 years striving for more for my clients, making sure I was doing everything in my power to make sure they could rest easy.  

But over the Thanksgiving holidays this year, something crossed my computer screen that made me sit back and reflect on those words. 

Tanya and daughter Emily, from "Dear special needs parent, you’re doing a good job" by Whitney Barthel

Tanya and daughter Emily, from "Dear special needs parent, you’re doing a good job" by Whitney Barthel

 

 

 

It was a blog post entitled: 

“Dear special needs parent, you’re doing a good job.”

(Click to follow the link to the original post by Whitney Barthel)

 

 

As some of you know, in addition to “regular” estate planning, I’ve been focusing more and more of my time working with special needs families and the challenges that face them from a legal, estate planning standpoint. Working with these families gives me immense joy as I see the work I do begin to relieve some of the stress and intensity they face day in, day out. 

To these special parents, hearing that they’re doing a good job means their patience has won this week. It means that they haven’t had to hear devastating news from the doctor that there has been a decline since the last visit. It means they’ve been able to entertain guests without the typical back-patting and false condolences. 

From the blog post:

Having a child that has to work one hundred times harder to achieve something that comes easily to another is at times frustrating. That being said, when special children achieve something remarkable (like talking or walking), there is no greater joy in THE WORLD. There are many times I am so proud and my heart is so full that I cry — a lot.
— Whitney Barthel

When you look at all the things that take place in an average day for a parent of a severely disabled child with autism or down syndrome, you’re nothing short of amazed at the hope, determination, wisdom, patience and love these families have for one another, even when they may not think so. 

High costs of care, concern over the right or adequate care, feelings of isolation, anxiety about their child turning 18, and worries of what will happen to them after they die, along with the complicated paperwork associated with that… these are all things that we’d rather not have to worry about on top of the usual challenges that come along with being a parent. 

I was working with a father of a child that was diagnosed with severe autism at 2 years old. The father was a very successful doctor who did his best to provide his son with all the services and care he needed. One of those “no-matter-the-cost” cases. Beyond just the financial load that you would expect for a case like this, this man dedicated an enormous amount of time working with his son every day to overcome the hurdles he faced. Zero speech faculties, lack of motor skills, inability to learn quickly – these problems persisted year after year after that initial diagnosis. You could see the immense sense of responsibility on the father’s face as the years passed. But he kept showing up. 

The child has since graduated high school, gone to college, earned a masters degree, now working on a Ph.D and just recently got married.  A far cry from that 2-year old child that got the diagnosis. 

Of course, this story has an atypical and incredible happy ending, and not every case ends this way. But you can see this love and determination all over the place once you start to look for it in these communities. 

I feel grateful these families have access to resources and organizations that can help them provide their child with the best care available, but sometimes the load can get to be too much. Because of the incredible burden both financially and emotionally that some of these cases have, often the best care results in less than stellar outcomes. Even a father as dedicated as my client can be burnt out by the extreme nature of symptoms his child might be experiencing. 

There is a “good enough” mentality with some of the services that I have done my research on that are in place to support people like my client. “Good enough” does not alleviate the fears and anxieties that is experienced by these people when they consider what may happen when their child is legally considered an adult, but does not have the faculties to take care of themselves. “Good enough” is not a suitable answer when a parent asks themselves if they’ve done everything they can to ensure their child will be taken care of when they pass on. 

It is to help alleviate these anxieties for this remarkable group of people that I have begun focusing more of my practice towards the special needs community. At the other end of the spectrum, adults with aging parents facing Alzheimers or dementia have to deal with similar hurdles. It’s actually sobering to see how close the two groups are in their worries and anxieties, but also in how the family joins together in love and support to face these unique set of challenges together. 

I have a request for you. 

This holiday season, take a moment to reflect on what “good enough” would look and feel like for your livelihood.  What it would look like for your business, your family, your future. 

Now add on the special needs of a child with severe autism, or Down Syndrome, or an aging parent with Parkinson’s or Alzheimers. 

This letter is not intended to depress you – in fact, I want to share the tremendous joy I get out of the work I do helping to ease the fear, anxiety and worry of families experiences these circumstances.

If you know any families with a similar situation, please send them my way. I would love to have a conversation with them. 

Usually, a direct introduction works best; you can also pass along my phone number, which is 310-577-9104. 

Slowing down for a moment to consider the challenges of the special needs family seemed to be a fitting exercise this Thanksgiving, and I’m happy to have the opportunity to re-engage you as a friend and client.  

And I would also love to hear from you. If you’ve made any significant life changes since we last spoke, like you have a new home, a new marriage or child (or grandchild!), please give me a call to see what options you have to protect your precious assets and loved ones. 

Have a wonderful holiday, 

Art Swerdloff