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.

 

It Takes a TEAM

I started with a new company a few months ago, and realized immediately I was not going to be successful on my own – to make the most of my skill sets I was going to have to rely on everyone else. Now for some of you reading this it may seem like common sense, but for the last year or so I had pretty much been left to my own devices – if I needed help I could ask, but it was easy for me to believe I was a one-man show. 

I think the same can be said as parents of children with disabilities (I’ve never been a parent of a child without, so I can’t say). We get really used to just putting our heads down and slogging forward, figuring stuff out as necessary; and often, like my wife and I did, splitting the responsibilities. This got us by, I don’t feel like my son suffered or wanted for anything; but in hindsight we certainly could’ve done more (isn’t that always the case?).

What I’ve learned over the last (5) years is this – yes, I can find a way to do just about anything on my own; but why should I?! Instead I look for an expert in whatever it is I need to do. For example, I had a friend help me teach him to cook and he’s now making himself dinner every night.

I also hired an advocate when he was transitioning from middle to High School. Not because I felt the school was trying to screw me over, quite the opposite – I’m a very passionate guy and I didn’t want to send the wrong message to the other members of the IEP meetings. I also had a hard time coming to terms with their recommendation that he should be in the certificate program (in school until 21) rather than earn a diploma. The advocate helped me work through this (although if I’m completely transparent I’m still finding it hard to swallow – although I believe it is the right thing to do).

These are just a few examples, and you don’t necessarily have to pay a professional. After all, there are a lot of people in this world and it’s likely someone else has lived through something that can be correlated to challenges you’re facing now. I’m not suggesting you put your business out there; but I do believe you should build yourself a core network of individuals whom you can trust, who can understand where you are and where you want to be. And be okay with this group changing over time, I think life has stages and we each pass through them at our own time and pace.

I learned this when I was stationed on my first boat (submarine, hence the pic); but somehow over the years I had forgotten. I’m betting many of you may be saying something similar – maybe from your time playing sports in school, or as a Boy/Girl Scout. It often seems easier to do it ourselves rather than asking for help; but the risk we run in doing so is not knowing what we could be missing. So next time you come across something that’s not in your “lane” take a moment and ask yourself – who do I know that I can reach out to. If no-one readily comes to mind, ask yourself, who do I know who seems to know “everyone”. I have yet to meet someone that doesn’t know at least one person like this, so I’m betting you do. If not, reach out to me – I’ll be happy to help you connect with the right resource.

You’re NOT alone!

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).

When Is Your “Independence Day”?

July 4th is Independence Day for those of us living in the United States, and it brings to mind thoughts of what independence means – is it the same for everyone; or, as I suspect, do each of us hold our own ideal close to our heart – perhaps never sharing?

Certainly, the freedoms guaranteed by our Constitution mean a LOT to me, I’m proud of the years I served in the Navy; but I don’t consider myself truly “independent”; at least, not yet. In my mind I won’t be “independent” until I’m confident my son will be able to have a life worth living on his own – this should not be confused with “surviving”. Until this happens, he’ll be dependent upon me; which to me means I’m not “free”.

This is not a pity party or a complaint, but it is my reality – and I think for many of you reading this there is a similar reality. I think we plan our whole lives for when we don’t have to answer to anyone, when we can just do what we want when we want (well, I KNOW this was my plan). However, reality is seldom so black and white.

My “independence day” is on the horizon, and I have a strong belief I will live to see it – my son’s own independence continues to grow in leaps and bounds; and thanks to technology things we once thought would be insurmountable can either now be done, or will be achievable in my lifetime, without much more effort than it takes to open an app.

For those of you reading this – what does freedom mean to you? Are you doing everything you can to achieve it; or are you waiting for someone else to give it to you? If you’re waiting, don’t! To the best of my knowledge independence has never been achieved without a LOT of effort from those desiring it. I’m not suggesting you storm the ramparts or take up arms against the establishment; but if you don’t at least contribute the achievement of your goals will you truly value them? Heck, will you even recognize when they come true?

So set your sights on what freedom means to you, and map out a strategy to get there and get moving. If you’re fortunate enough to have achieved your freedom, extend a hand and help others – encouraging words go a LONG way, so don’t be shy or afraid to offer praise. Celebrate the little victories, and don’t let losses bog you down – learn the lessons they are meant to teach and forge ahead. Finally, remember it’s hard to know you’ve arrived at your destination if you’ve never identified where you are going.

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.

ABLE Accounts & You

One of the most frequent questions I still get is “should I get an ABLE account or a Special Needs Trust”? And the answer is, generally, both. There is a lot of potential to use them in a complimentary fashion, although there may be some instances where it’s more effective to just get the Special Needs Trust.

As a brief recap, or intro for those that are not familiar with ABLE accounts, here is a quick overview. The ABLE National Resource Center has done an amazing job compiling information about ABLE accounts, including a map allowing you to select each state; and run a comparison of various accounts. If you haven’t yet, I encourage you to check it out, here’s the link: http://www.ablenrc.org/. I will deliberately not be diving into what an ABLE account is, how you set one up, or its requirements in here.

ABLE accounts allow individuals with disabilities to accumulate up to a maximum of $100,000 while receiving SSI. Should the individual’s account exceed $100k, their SSI benefits will be suspended – but they will maintain their Medicaid. As of June 2017 you can only contribute $14k per year to an ABLE account.

Some ways I would incorporate them into a family’s plan include:

1) Saving an individual’s wages.

2) When charging a family member rent to maximize SSI, gift up to $14k back.

3) Use as a mid to long term investment vehicle for larger purchases insurance doesn’t cover; for example assistive or adaptive technology.

4) Housing or food costs (using a trust could jeopardize SSI).

These are examples, and don’t come anywhere near touching on everything it could be for. ABLE accounts are designed to help individuals with disabilities increase their level of independence and do more than just “survive”. Individuals do not have to justify their spending to a trustee, although they should be tracking what they spend the money on – and from what I’ve seen the accounts themselves provide tools for this on their websites.

In my opinion, ABLE accounts are fantastic tools; but do not replace the need for a Special Needs Trust. I encourage families to think outside the box – instead of focusing on what our children/siblings can’t do let’s start imagining what they could do, with the right supports. Disability rights momentum is gaining, there are opportunities for our children now which didn’t exist just 10 years ago; and it’s my hope this continues exponentially.

You can do your part by having a willingness to accept there may be failures, and the change may not be pretty. Sure, there is a possibility the money in an ABLE account may be spent frivolously; but in my opinion that’s just part of being independent (not that I’d be happy about it). Can any of us honestly say we’ve never wasted any of our money?

All I ask is this. Instead of immediately saying to yourself “my son/daughter could never…”; replace it with “I will let my son/daughter try ___________, and though they may not be successful right away (few of us are) I will continue to be supportive”. The reality is there will still be things outside of their capability, at least for now. But technology is evolving, providing capabilities I never would’ve considered. As one example – the app “Be My Eyes“.

Circling back to the ABLE account, you don’t need a financial advisor/planner to set one up; I opened my son’s in Virginia (Maryland’s isn’t available yet) and I found it very user friendly. If you’re not sure how an ABLE account will tie into your overall plan, or if it’s right for you, then consult with an advisor/planner – but make sure they understand special needs planning; because we are not the same.