Get Unplugged

This weekend I attended my first retreat, hosted by A Mother’s Rest, in Afton, Virginia – at the Rockfish Valley Inn. Having never attended one, I was more than a little nervous about what to expect; and what, if anything, would be expected of me. I had been told not to worry, I could just chill in my room all weekend if I wanted – but I still had my doubts. Nonetheless I packed my bags, including books to read – my preference when afforded the uninterrupted time.

My first impression when I arrived was “wow, am I in the right place?!” The Inn is not far from the Blue Ridge Highway and Skyline Drive, as well as the Appalachian Trail and many more hiking areas – the scenery was breathtaking. I spent Friday night and most of Saturday by myself – seclusion helps me decompress.

Some of the other dads chose to go to Monticello and explore the surrounding areas – there was truly no agenda other than relax and recharge. It was, in a word, FANTASTIC! Eventually I emerged and met the other dads, and was reminded how nice it is to talk with people who “get it”; much is left unsaid because they’re living it too. We played cards and enjoyed a leisurely dinner on Saturday & Sunday night.

Breakfast items were provided, and there was no set time when everyone was expected to come eat. You could pop in and make yourself whatever you wanted, whenever you wanted. Dreamers Merchant Coffee Company donated several packages – and if you’ve never had their coffee you’re missing out! I’m usually a whatever is cheaper in the store kind of guy; but now I’m a changed man. Cherry on top – Dreamers’ has an incredible mission; having been founded in the hopes of creating a job for the founder’s daughter with disabilities.

I cannot say enough about A Mother’s Rest, and the tireless work of Andrea Faris Roberts. I don’t remember the last time I’ve felt as relaxed as I do writing this, and I encourage anyone reading this to check out A Mother’s Rest’s home page. If you don’t have a family member with a disability, I’ll put even money on you knowing someone who does. From this dad’s perspective, I’m glad Andrea took up this challenge; and I will do whatever I can to help her get the word out.

 

Manna Food Center

Manna Food Center is a food bank headquartered in Gaithersburg, Maryland focused on eliminating hunger in Montgomery County, Maryland. It’s a little more localized than the non-profits I usually spotlight; but with something like eliminating hunger I believe it’s more effective to focus locally and spread.

Who They Are 

Manna Food Center is a food bank – they provide food to approximately 40k people each year; in addition to supplying soup kitchens, food pantries and shelters throughout the County. As a food pantry they’ve established distribution sites to enable those who need the help to readily access it. Before meeting with them I had no idea what the difference was between a food bank and food pantry – a food bank stores the food and products; the pantry is what actually distributes the food. A food bank could (and Manna does) supply multiple food pantries.

I was shocked to learn 1/3 of students attending public schools receive free or discounted lunches – because of how wealthy I’ve perceived Montgomery County to be. To be clear – Montgomery County is wealthy, but they also have a large population of seniors and those with disabilities who may struggle given the high cost of living and additional healthcare expenses.

What They Do 

Manna Food Center serves over 3,700 families each month! Rather than list out their strategic plan in detail, I invite (and encourage) you to read about it here. In brief, they have (3) priorities (from their website):

(1) Participant-centered & data driven program delivery

(2) Community Leadership & Advocacy

(3) A values-based business model that supports the people who make our work possible.

What Else Should I Know

They’ve repurposed an old school bus into a mobile kitchen and pop-up pantry; bringing nutritious foods AND providing the opportunity for those living in the communities reached to learn how to prepare them.

Manna doesn’t just provide a handout. They do their best to help those they serve understand the importance of making healthy lifestyle choices, provide them with the opportunity to do so and in many cases bridge the gap when families hit a rough spot; something I think all of us can relate to – even though maybe not to the extent we didn’t know where our next meal(s) were coming from.

Disclaimer

I am not an employee of Manna Food Center and any errors noted are my own. If I have misrepresented, or misstated anything please provide constructive feedback so I may make the appropriate change(s). All opinions and views are my own.

Because They Can’t! Wait, Can They?

As my son’s 18th birthday approaches I find myself reflecting on the significant independence he’s gained over the last (5) years. I remember when we were first told he had Autism, the doctors and teachers made it a point to ensure we understood he would likely plateau – and not to get too upset. Full disclosure – this happened over 12 years ago and I’m coloring what was said with what I heard/remember, so I own the fact this may not have been what they were trying to convey. But it’s what my wife and I took away, and it set a tone.

In the following years my wife and I allowed this to color our perception and interactions with our son – at first by doing things for him at the first sign of trouble, and eventually just outright doing it for him – not even letting him try. When my wife died my son was 12, and he literally did next to nothing for himself – to include toileting and bathing. This year he’ll turn 18, and he’s quite the independent young man. He makes his own dinner every night, puts laundry away, cleans up after himself and gives me a grocery list weekly – in addition to toileting and bathing himself.

I allowed a similar influence to shade my perceptions when I was in the Navy. I had been assigned to manage a shop of around twenty people in Air Department, and I was told nothing but negative things about them. Rather than ignoring these opinions, or at least taking them with a grain of salt; I went in fully convinced I’d been given the worst bunch of people in the Navy. Needless to say I turned into the worst boss I could imagine, I don’t think tyrant is too strong a word. To make it worse, I didn’t learn until it was too late – after I had transferred to another duty station.

My point in these trips down memory lane is this. I think we’re all guilty of acting on incorrect assumptions based on information provided. As a parent of a child with disabilities I struggle constantly to remind myself the diagnosis isn’t a rule book – it’s an identification for why he may have certain behaviors and challenges. It doesn’t mean every possible manifestation will apply, and even those occurring are definitively not able to be worked around.

Technology and medicine are advancing at an incredible rate. People who may have once been trapped inside their bodies are finding new ways to communicate – through organizations like VocaliD and devices like the Surface and iPad. They have wheelchairs allowing people to stand upright; and are developing exoskeletons to provide even more mobility.

Yet some of us still latch on to the worst possible scenario, telling ourselves nothing will help our child – they’re different. I challenge you to change this narrative, instead of focusing on what your child can’t do – celebrate what they can. And never stop trying, even if they’ve failed in the past. If you had a child without a disability I don’t think you’d give up, I think most of us would continue looking for tools to help them be successful. So why have a double standard?

Yes, there are things my son cannot do right now – and I will concede he may never be able to. The biggest example that comes to mind is driving; but self-driving cars are no longer the stuff of science fiction. Will they be affordable and commonplace in his lifetime – I have no idea, but I certainly hope so. I challenge all of you to revisit everything you don’t think your child/sibling can do; and think outside the box. What can you do to get around these limitations? I bet there is at least one thing you can change! Good luck.

The Catch-22 of Taxes and Social Security

I don’t think anybody likes taxes – in fact I think it’s safe to say we would all prefer not to pay them. To that end, we do whatever we can to reduce what Uncle Sam sees as our taxable income; and why not – after all we work hard for what we earn! Unfortunately, not very many companies offer pensions, so it’s up to the individual to save for his or her retirement. Add a child with a disability, and you’re saving for at least two generations; and this is where the catch-22 comes into play.

If you reduce your taxable income your reducing the amount you pay into social security. Social Security considers the average of 35 years of wage history, with any years not reported counted as $0 income. This average is used to determine what they will pay you, the worker, in the event you become disabled or retire. The lower the amount you pay in, the lower the amount you receive. This will be even further reduced by taking social security before your full retirement age (FRA).

So what,  you may be saying. Well, remember what I said in the first paragraph about most of us not receiving a pension. Without Social Security, 2 in 5 elderly Americans would have incomes below the poverty line – that’s 40% of people aged 65 and up (source Center of Budget and Policy Priorities). If you decrease the amount you “earn”, without saving for your retirement, you’re also reducing your retirement income; not to mention what you’ll leave behind for your spouse or disabled child.

Disabled adult children become eligible to receive SSDI, provided they were disabled before the age of 22, paid on their parent’s Social Security earnings record. There are additional requirements (found here); but the point I want to make is YOU control what your child will receive. In 2017 the maximum earnings subject to Social Security payroll tax is $127,200. This means if you’re married or head of household you’d be in the 25% federal tax bracket.

In my opinion it’s worth it (to me) for my son to receive the highest amount of SSDI possible. I’m not a fan of paying taxes, but I do want to ensure my son’s quality of life doesn’t drop when I’m gone. I’m not counting just on social security, I have life insurance and I’m fortunate to transfer some of my military pension to him as well. Each of us needs to make our own decisions, there is no right or wrong answer. However ensure you are making an informed decision. Weigh the pros/cons of taxes, and consider what you’re doing to help yourself, and if applicable, your disabled child.

This, like many financial decisions, doesn’t have to be made in a vacuum. Talk to your advisor and/or accountant; get their input. The solution is not necessarily always reducing your taxable income, especially if you’re a self-employed business owner and you’re reinvesting everything you make back into the business (not saving for retirement).

A Mother’s Rest – Retreats for Families of Children with Extra Needs

A Mother’s Rest was founded to give families a chance to get away, by a mother who understands what families like ours experience daily. I’ve never used respite, when my wife was alive I don’t remember it even being a conversation – and it wasn’t because we didn’t want it; I don’t recall ever hearing it presented as an option. I think many families are like mine – we would love a rest/break, but don’t know where to go or feel we can trust anyone else with our children. A Mother’s Rest answers where to go, it has partnerships with B&B’s across the country; and they are actively working to form partnerships with organizations, like Jill’s House, to provide child care.

Who They Are 

“A Mother’s Rest is designed to be a quiet, peaceful sanctuary of fellowship for myself (founder) and others who really understand the fatigues that can come with special needs parenting”. (Retrieved from https://www.amothersrest.org/thefounder).

I think what appeals most, to me, is their belief “RESPITE is not only a period of time, it is a place and a feeling. It’s a reprieve, even if short-lived, from the hardships of everyday life.” When I was on Active Duty my wife was often living as a single mom, and at the time I had no idea how stressful it may have been – now as a single dad of a teen I’m learning first hand about some, but certainly not all, of the challenges she faced and how important getting a break is.

What They Do 

A Mother’s Rest offers affordable retreats across the country, by partnering with B&B’s to give moms, dads and couples an opportunity to get away, unplug, and if desired, hang out with fellow travelers on our journey. Alternatively these retreats offer opportunities to completely unplug – the only agenda I’m aware of is recharging one’s emotional and psychological batteries.

Some other opportunities A Mother’s Rest include grants of up to $2,500 for children and adults with disabilities to attend day or sleep-away summer camps. What an amazing opportunity, not only as a break for parents; but as an opportunity for those attending to learn/improve their social and independent living skills. A Mother’s Rest needs your help to make this a reality – seeking volunteers and donations (more information found here).

 

What Else Should I Know

A Mother’s Rest is the passion project of a mom who is living it, she really understands what it means to raise a child with disabilities, and how important it is to stay grounded – for you and your child. If you have children, with or without disabilities, I believe you can relate to wanting to “get away”. A Mother’s Rest helps us do so; and they are looking to do much, much more. I encourage you to check out their website to learn more.

Disclaimer

I am not an employee of A Mother’s Rest and any errors noted are my own. If I have misrepresented, or misstated anything please provide constructive feedback so I may make the appropriate change(s). All opinions and views are my own.

Pathfinders for Autism

Pathfinders for Autism was founded in February 2000 by parents of children with Autism, creating a Resource Center shortly after. In the years since Pathfinders was founded it has grown to be Maryland’s largest Autism organization (to the best of my knowledge). Their most recent effort towards raising awareness has been with the staffo of emergency rooms throughout the state, helping nurses and doctors understand the additional complications which may be present when an individual with Autism arrives – for example non-verbal or seeming lack of comprehension to questions asked.

Who They Are 

Pathfinders’ Mission statement is short and to the point (from their website) – “to improve the lives of individuals with autism and the people who care for them. We accomplish this through a variety of programs and services, all of which are offered free of charge.” Personally, I continue to refer clients and other professionals to their website because of the immense amount of information to be found there. I’ve also been fortunate enough to participate in a few of their programs, and I was blown away by how well they were run.

What They Do 

Pathfinders does so much, it’s difficult to capture it in a format like this – so I am going to highlight a few of the things which impress me the most and encourage you to check out their website. I want to stress – many of the resources and information provided isn’t just for Autism, it can be applied equally well to just about any disability.

The Pathfinders for Autism Resource Center is how they originally started, and remains a significant part of their daily activities. Pathfinders’ staff will respond personally to all inquiries made – whether through Facebook, e-mail or phone; and they distribute monthly “Parent Tips” covering a wide variety of topics.

They sponsor workshops around the state – bringing in experts on topics like vocational rehab, financial planning and dietary interventions, to name a few. Annually they are a sponsor of Honestly Autism Day, combining a resource fair with well-known Key Note speakers and break-out sessions.

As mentioned above, they train First Responders – this includes Law Enforcement, Fire Fighters, Emergency Medical Services (EMS) and, most recently, Emergency Rooms. These trainings are more than powerpoint presentations, Pathfinders will bring self-advocate volunteers and provide scenario-based instruction – which in my opinion is really the only way to help people truly understand what they could be faced with.

What Else Should I Know

As I stated, Pathfinders for Autism does so much more than I can fit into this medium. Personally I’ve used their “Autism by Age” tab on their website to help me figure out what to do after my wife passed away, and I continue to refer to it even today. Their Resources and Help tab offers information for residents and non-residents alike, as well as a search tool for providers and services (and much, much more).

Pathfinders for Autism is an authorized 501(c)3, you can find their 990 and other financial information on their website. They sponsor a Run Wild for Autism 5k Race and 1 Mile Fun Run & Walk at the Baltimore Zoo, or you can donate online. In my opinion, they have proven themselves to be extremely good stewards of the funds received, and are a most deserving organization.

Disclaimer

I am not an employee of Pathfinders for Autism and any errors noted are my own. If I have misrepresented, or misstated anything please provide constructive feedback so I may make the appropriate change(s). All opinions and views are my own.

Check Yourself!

This year my son turns 18, which by any measure is a major milestone; but I’m finding it especially noteworthy as I consider what it means with regards to my estate planning and his disability. When he was younger I was able to delude myself into thinking there may be a miracle cure, he’d suddenly wake up one day and no longer have the cognitive delays he’s had since birth. Some of this is hyperbole, I’m certainly being melodramatic – but it has been weighing on my mind.

Specifically what will happen when I’m gone. Having lost my spouse to a sudden illness, making the toughest choice I’ve ever had to make taking her off life support; I understand nothing is promised. I have an estate plan, I completed it the year after my wife died; but so much has changed in the intervening years – now it’s time to revisit the plan and make the appropriate changes.

Many of my readers will experience similar thoughts and feelings, if you haven’t already; the question is what are you doing about it? It’s much easier to turn a blind eye and say “I’ll get to it”; but let’s be honest – for a myriad of reasons we never do. Me, I’m waiting until after my son’s birthday; for a couple reasons. First, I’ll be applying to the VA for his “helpless child” status; an unfortunate moniker which nonetheless will enable him to receive my Survivor Benefit Plan (SBP) when I’m gone. For those of you who are not familiar with SBP, it provides a spouse and/or child(ren) with up to 55% of the veteran’s pension.

The other reason I’m waiting is because I need to make the decision about becoming his Guardian. As a minor this is automatic, but after he becomes 18, should I choose to pursue this option, I will need to prove to a judge he is incapable of taking care of himself. In my son’s case this isn’t as simple as “yes” or “no”. I’ve always, and regardless of if my decision is for guardianship, will continue to be, a proponent of alternatives to guardianship. That’s a topic for its own blog, but needless to say I have some major decisions to make in the next few months.

Why am I writing all this? To show you I “get it”. I understand how difficult it can be to verify asset titling and beneficiary designations, and why you may not want to make that call to the estate planning attorney to get your documents in order. But believe it or not, doing so WILL help. In some ways I can’t wait to get mine done, ensuring my son’s first and third party trusts are established so he has one less thing to worry about when I’m gone.

Losing someone is difficult, there is so much to be done it’s often hard to conceive how you’re going to accomplish it all. Why add to this by making your family and loved ones try to figure out what you would’ve wanted? Have the tough conversation, and get your final wishes in writing – it’s a whole lot less unpleasant than not having anything when the unforeseen happens. My wife and discussed extreme measures, and although it didn’t make the decision easier when I had to make it; I’m glad I knew what she wanted – because I knew ultimately I was honoring her. So take a look at your documents, if it’s been more than 4 years since you had your estate plan done (or you haven’t gotten around to it yet) reach out to an attorney. I’m here for my clients should they need the moral support, and I’m sure many of you can rely on your Advisors as well.