The Struggle is Real

Lately I’ve been on a kick to help people motivate themselves to maintain momentum, if moving forward; or overcome inertia if they’re at a crossroads; and today I want to share a few of my current challenges and strategies.

My son turned 18 recently – leading me to start the process for his SSI, updating DFAS so he maintains eligibility for my military pension and TRICARE, and updating the VA to keep my disability payments at their current level (with a dependent). Given his disabilities I’m also applying for Guardianship. As you may be able to imagine (or perhaps can relate having been through already), this in itself can feel like a full time job.

The first challenge I’ve come across is how to help my son receive his full SSI benefit and the adult disabled child benefit (survivor benefit) from my wife. If both go to traditional savings or checking accounts, the SSI will be offset by the other benefit. So my first thought was his ABLE account, because the assets are not considered when determining SSI eligibility.

Unfortunately, his ABLE account is not equipped to receive electronic deposits – so Strike 1. No problem, I need a 1st Party Special Needs Trust anyway, for the military’s Survivor Benefit Plan; I’ll just send the adult disabled benefit there. My intent was to complete ALL the estate documents at once – 1st & 3rd party SNT’s, Guardianship, DPOA, etc – and I was on a great trajectory.

Was being the operative word. I was able to get the Physician’s letter, no problem. However, I also need a Social Worker letter – and because he’s never received services (DDA “future need”) – he hasn’t worked with a Social Worker. His teacher gave me a couple options, and although neither was viable I appreciate her time and effort. So now we’re in a sort of limbo while I figure this piece out.

Rather than let the whole process stall, I’ve decided to move forward with everything else, and finish the Guardianship as I’m able. I’m also working on engaging the DDA again, since my son is an adult and they should be able to help me with the transition from High School at age 21.

The last piece on my plate (as far as I’m aware) is following up with DORS again – getting my son employment assistance. I’ve been working on this for (2)  years, since he turned 16 – it had been my hope to have him working summers; getting used to the routines necessary to be successful post-high school. That hasn’t materialized, yet, but I will redouble my efforts towards the end of this school year.

All of this is meant only to show I understand how frustrating and time consuming it can be. And I get it can be overwhelming, especially if it’s all taken into consideration at once. The best thing I think anyone can do is pick one item and work it until the next steps are out of your control; rinse and repeat. Not sure how to prioritize, ask for help. I started a company – Special Needs Navigator – just for this purpose, and it’s my belief there are other resources like this throughout the country; although it may take some work to find them.

Don’t give up, as the image I selected shows success could be the next step you take. If you’re feeling overwhelmed, stop and take a breath. Help yourself, establish routines to give yourself a mental/emotional recharge – the pause and refresh will help you identify alternatives you may otherwise miss. Keep charging – you’ve got this!

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Adversity – Furnace or Forge

Life can be difficult and is often unfair. I don’t think anyone would argue, and I’m willing to bet many of us have felt like throwing our hands in the air and saying “enough is enough – I quit”. The difference is what happens at this point – do you actually give up, consumed by the fires; or do you push through, overcoming the situation/circumstance with new tools and beliefs?

I’ve done both, it’s taken me many years to recognize there is always another side to adversity – it’s just how long it’s going to take you to get through. The more you do to help yourself when things are going well, the shorter (generally) the impact will last. The trick, in my opinion, is understanding (1) you’re not alone, and (2) you have more tools than you may be giving yourself credit for.

Develop habits when things are going well, so you don’t need to think about “how” to do something when life throws you a curve ball. Commit to sitting down with the most positive person you know at least twice a month, when you are at the bottom of a hole they can extend a rope; and if it’s a habit/routine they will know may be up if you miss one or two appointments.

Financially, commit to setting aside at least $25 each week in an online savings account – where you don’t have ready access. This creates the habit of spending, but it also gives you a lifeline when those “oh craps” occur. If you can afford to do more, then build up gradually to what you’re comfortable setting aside – but don’t start too big. The intent is to not notice it, so you will continue.

When bad things happen look for correlations to how you are feeling. At some point in the past you more than likely felt very similar, even if it was to a lesser degree. How did you overcome it then? Use those tools, adapting as necessary to fit your current circumstance.

Some changes cannot be undone. I will never get my wife back, nor will my son’s Autism go away. That doesn’t mean we can’t, or shouldn’t, live our lives to the fullest. We’ve adapted, and so can you. Do your best to never let circumstances identify who you are. Continue to grow, seek new experiences and don’t fear failure. And as I’ve said so often before – quit trying to be a one-person show. Instead be the conductor and surround yourself with people who have achieved what you’re aiming for and have similar values and ethics.

VET TIX

VET TIX provides tickets to events which reduce stress, strengthen family bonds, build life-long memories and encourage service members and veterans to stay engaged with local communities and American life. We support our troops by honoring their service and providing positive family and life experiences, during and after their years of service to our country (Retrieved from https://www.vettix.org/index.php). As a veteran I’m honored an organization has taken this unique approach to help Active Duty military and veterans; and I want to help them get their message out.

Who They Are 

VET TIX has (2) programs I’m aware of, Tickets for Troops and Hero’s Wish.

Tickets for Troops uses partnerships with major sports teams, organizations and event ticket holders to give active duty military and honorably discharged veterans free and discounted tickets. Military personnel, especially junior enlisted, do not make very much money – this is an amazing opportunity for our service members.

Hero’s Wish aims to ease the burden on families who have lost a loved one (KIA), been injured (WIA) or is currently deployed; by providing a once in a lifetime expense at an event. Their services are available to active duty personnel in a 6 month before/after deployment, severely wounded, or families of those killed in action. They provide a list of current hero’s wishes here.

What They Do 

VET TIX’s website has a link for veterans to create an account – where you will identify the type (active duty, retired, etc). From there they will verify the information, because they want to ensure veterans, and their families, are the ones being served. The applicants will let VET TIX know what event they would like to attend, and from there VET TIX works to secure tickets. The attendees will pay a small fee, much less than the full cost if they were to buy it themselves, to receive their tickets.

What Else Should I Know

 

Two of the three founders served in the military, and the third’s father had served – so all three are familiar with the sacrifices service members and their families experience. Their Core Values of Patriotism, Support & Recognition, Quality of Life and Family really resonated with me – and as I learned more about VET TIX it became clearer and clearer that they are the “real deal”.

Disclaimer

I am not an employee of Vet TIX 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.

Make Inertia Work For You

I chose the image for this blog because I think it’s what most people think of when they hear the word “inertia”. Sadly, this is only half the story. Inertia means something is going to maintain its current state until acted upon by an outside force. So yes – if the object is at rest, it will remain at rest. BUT, and this is IMPORTANT, it also means if an object is in motion it will remain in motion.

I’m passionate about helping people become successful, and often the first step is overcoming their current state of inertia. When you’re not doing something it becomes much easier to identify ALL the reasons not to change – it’s the wrong time, it will cost too much, etc. Let’s assume all of these are valid concerns; when are they going to change? The truth is most of them will not. The universe isn’t going to line up the stars, moons & planets for your convenience; and products/services are going to continue rising in cost (or fade away).

So instead of focusing on reasons not to do something, identify WHY you want to make the change. Something had to drive you to this point, and if it’s truly important to you do take action – any action, no matter how small.

Taking action overcomes your current state of inertia – it’s the force necessary to start momentum in a different direction. The longer you’ve been in your current mode, the more effort you are going to need to exert to enact the change. Don’t give up if you don’t see results right away; things take time.

Think of any changes you’ve made recently – be it weight loss, changing jobs, or going back to school (to list a few examples). When you first started it probably sucked, it was uncomfortable and you had to get into a new routine. Eventually you stopped noticing, and it just became a habit; inertia has set in.

Understanding this is important, because you can use it to help yourself become more successful. Let’s use networking for example, because I think most (if not all) of us need to network to some degree; and many of us have an immense dislike for it. Start by introducing yourself to at least one new person everyday, and make small talk. As you become more comfortable with this expand it; get to know everyone in your company – not just those you interact with every day. Before you know it, it will have become second nature and you’re on your way to mastering a new skill which (in my opinion) will go a long way to aiding your success.

Inertia is difficult to overcome, so don’t be afraid to seek assistance. Use an accountability partner, someone who will call you on your excuses and offer encouragement. They will also help you maintain perspective, because it’s often difficult to notice change within yourself – especially when it’s occurring gradually.

So what are you waiting for? September is just around the corner, let’s end 2017 with a BANG. Pick one thing you’ve been “meaning to do”; find yourself an accountability partner (friend, trusted advisor, family, etc); and put inertia to work. Let’s get your constant velocity angled upwards – 2018 look out, because here we come!

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.

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.