Take the Long View

I’ve found it can be incredibly difficult to plan for the long term, with all the noise and distractions vying for your attention in the short term. Something always seems to come up, tempting you by its immediacy. It’s because of this I think it’s critical we have a deep understanding about the what, when and why of our long term goals.

A common example I’ve been helping people with is where they want to live when their child is older. Understandably they don’t want to move while the child is in school, because of the possible disruption it could create. However, if they are considering a move to another State they could be hurting themselves by waiting; because most, if not all, States have transitioning youth funds set aside for young adults leaving High School at 21. Waiver programs are designed to give students automatic head of the line privileges; but this will not apply to someone who moves into the State after High School – they will have to wait.

The “noise” is people with good intentions encouraging the parents to stay, reinforcing the parents’ belief it’s what’s best for the child. And it very well may be, but it should be weighed against the need for continuing services after High School. There is also fear of the unknown – how will my child react, what will the school be like, etc. It’s a lot to handle, especially if you have other children and/or are a single parent – you don’t have to do it alone; there are organizations and professionals who can help.

I’m using one example, focusing on a family who has a child with Special Needs making a move; but taking the long view is just as relevant when considering whether to buy or rent (a house), when to take social security, when to retire, etc. Take some time to yourself, away from distractions, and think about what you want and where you see yourself in 20 – 30 years. Then back into it, how are you going to get there?

Write it down – it’s not meant to be set in stone, but having a written record will help you when those crises occur and you need to make an immediate decision. In the heat of the moment it’s unreasonable to expect yourself to be able to think about the future; but you should absolutely be able to look at what you had written and use it to help ground you. You may not change your mind about what needs to be done, but you’re no longer operating purely on emotion. Practice with routine decisions, so you build the habit and muscle memory kicks in when the poop hits the fan. I’m here if you need/want help.

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Living Independently

As I continue to work on enrolling my son in Social Security, and completing the necessary paperwork with the VA and DFAS (military pay system), I can’t help but wonder what he’s going to do when I’m gone – and will this all be enough. Obviously we can’t plan for every eventuality, so we do our best to address as much as possible.

When we’ve finished applying for his benefits, my next focus will be on where he will live. There are many organizations throughout the country offering Residential facilities, and with Group Homes no longer authorized it’s a safe bet these homes will not have more than (4) residents; but we’ve (my son and I) decided not to pursue this route – because he doesn’t want to have a roommate.

There are also organizations creating communities of individuals with a specific diagnosis, I believe the most common is Autism. Although I think this is an incredible opportunity for some families, for me personally it does not meet the full inclusion experience I want for my son.

So what does this leave? For us, we’re looking at purchasing a multi-family home (duplex). While I’m alive, and able, I will work with a property management company to rent out the other unit (I don’t like doing maintenance). When I’m gone, either I will have paid off the mortgage or the life insurance will settle the debt; either way ownership of the property will transfer to my son’s Special Needs Trust, and the Trustee will work with the property management company.

In my opinion, the advantage to this is the property will pay for itself after I’m gone. The Trustee will have the authority to increase rent, evict tenants, etc; and the property management company will ensure the property is well maintained. Living in the house prior to me passing will allow us to develop an understanding of what the household expenses are; which will allow me to flesh out a reasonable budget for the Trustee to follow.

If you have a child, or sibling, you’re caring for and you haven’t put any thought into where they will live after you’re gone please use this as a siren call to start planning. There is no one-size fits all solution, it really boils down to what the individual wants/is capable of and your financial situation. The longer you wait, the more difficult it will become – but it’s only too late if you pass away before you do something; because then it falls into the hands of the State. If you’re not sure what to do, reach out and ask.

Hydrocephalus Association

Odds are if you haven’t been affected by Hydrocephalus, you’ve never heard of the Hydrocephalus Association; but for those whose lives it affects, it can have significant impact. It’s my hope this blog will pique your curiosity, and get the conversation started. Everything I’m referencing comes from the website  http://www.hydroassoc.org/; unless otherwise cited.

The Hydrocephalus Association offers a host of information about hydrocephalus on their website, so I’m not going to dive too deep. But at a surface level, I think it’s important to understand there are many ways one can develop hydrocephalus – according to stats I’ve read there are over One MILLION people in the US alone living with hydrocephalus.

Who They Are 

The Hydrocephalus Association serves as the primary nexus for research on hydrocephalus, a condition defined by an abnormal, excessive accumulation of cerebrospinal fluid (CSF) within the cavities of the brain (from website). They are committed to finding a cure to hydrocephalus, and to that end fund research programs and host conferences and workshops.

My introduction to hydrocephalus came at a seminar I presented about financial planning for families with Special Needs. In an almost off-hand fashion a mom informed me her daughter “only” had 13 brain surgeries before her 6th birthday. I may be mistaken on the exact numbers, but it shook me because it was a double digit number.

What They Do 

The Hydrocephalus Association uses a 3-pronged approach to accomplish their mission of eliminating hydrocephalus – they connect families with each other, forming communities offering support and resources; they work on clearing misconceptions and deepening the understanding of what hydrocephalus is, and isn’t; and funding research in biomarkers and genetics (to name a few directions of the research funding).

What Else Should I Know

According to NIH’s National Institute of Neurological Disorders and Stroke, hydrocephalus is a condition caused by excessive accumulation of cerebrospinal fluid (CSF) in the brain; and it may be congenital (present at birth) or acquired (develops at time of birth, or later). It may also be “communicating” – CSF blocked after it exits ventricles; or “non-communicating” – CSF blocked along one or more of the narrow passages connecting the narrow passages connecting the ventricles. The only treatment I was able to uncover is the installation of a shunt, basically a drain inserted into the skull to remove the excess fluid.

For more information, I’ve included a link to NIH’s fact sheet. Personally, I was surprised to learn it’s 30x’s more common than Cystic Fibrosis, because I’m much more familiar with Cystic Fibrosis.

Disclaimer

I am not an employee of the Hydrocephalus Association, 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!

Peaks & Valleys

Last week I was reminded of how quickly a high may be turned into a low – having been recharged from a retreat, and yet within a few days losing my patience for something I had thought my son had mastered. It was wrong of me to lose my patience, but I (like most of us) am only human and I have my faults. One I continue to work on is understanding just because my son may have seemingly “mastered” a skill, doesn’t mean it will translate naturally into a very similar skill – as it usually would for neurotypical peers.

When things happen to upset my equilibrium, I think back on the lessons Spencer Johnson covers in his book “Peaks and Valleys”. I first read the book the year my wife passed, when I couldn’t conceive of how I could be expected to do much more than just get out of bed and put clothes on. I’m not going to outline the entire book, but the premise is there will always be highs & lows; it’s up to you to note how you achieved your high and what brought the low – empowering you to increase the highs and decrease the lows.

I think I’m still processing those lessons – I certainly haven’t mastered them yet, even after (5) years. I believe we need to be ready to understand concepts, it’s not enough to tell ourselves we’re going to change – we have to internalize the reason we are making the change. I remember thinking I wanted to be happier after my wife passed, yet part of me felt guilty when I was in a good mood – I had to put that to rest.

This is one example, particular to me; but I think any of us who have something we say we want to accomplish, but are not truly doing what we need to be doing to accomplish it, can identify a demon we haven’t put to rest yet. This is, in my totally non-professional opinion, normal; it’s our valley(s).

We will start the climb to the peak when we acknowledge we have these thoughts. The climb will be longer for some than others, as we all make peace with ourselves in our own way. Some will work with therapists and caregivers, much like climbers hire guides to show them the most accessible (yet not necessarily any less difficult) paths to the top. Others will do their best to go alone, or work with someone who has been where they are and can show them how they got out. Some of us will have storms interrupting our progress, stopping us from as high as we could climb and forcing us to start over.

It’s not enough to say “don’t quit”. Not quitting doesn’t mean you’re going to be successful – Wile E Coyote never quit, look what that got him. If you are struggling, ask for help. At a minimum, find someone to open up to about what you’re struggling with. Speaking for myself, I often find new solutions I hadn’t considered when I verbalize my challenges. I’ve also received some incredible insight (although I’m slower than I like to admit to take action on recommendations).

At the end of the day remember this – every single person has something they are struggling with. What could be a significant challenge to them may seem minor to you, and vice versa; this is the beautiful thing about perspective. Rather than belittle them for their perception, help them find solutions. Find people that will do the same for you – they’re out there. Don’t let yourself get trapped in a valley, the view is much better at a peak!

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!