Life’s Choices

Life would be so much easier if there was really audience participation – wouldn’t it? Then you could determine if you were making the best choice for your life by how the reaction you receive, and react accordingly.

I jest, yet I can’t help but feel that’s how life is. There is no end of well-meaning individuals who are quick to voice their opinion on what you should do with barely a glance at what your life entails or (seemingly) thoughts about possible long-term consequences.

Today my son and I saw a physician, to get the second opinion needed when filing for Guardianship. This has been an internal struggle since before my wife passed, with me on the side of supported decision making. Yet when I review the evidence before me in as dispassionate a view as possible (not cold, just trying to be impartial) – I think I’m fooling myself if I believe he is capable of understanding the complexities associated with some of the decisions adults make almost daily.

In some ways I envy my son his innocence, and wish the world were a different place. Somewhere I wouldn’t need to worry about someone taking advantage of his trusting nature, or not so rushed as to really take the time to make sure he understands exactly what he is agreeing to (he has a tendency to agree to please people).

As a widowed father of a son with disabilities it’s not just an academic exercise to contemplate what will happen when I’m gone. I think most parents have these thoughts, although I doubt they dwell on them to the extent I (and I’d guess many of my peers) do. I’m fully aware the choices I make today will affect him for his lifetime, not just mine. Shows, like the Good Doctor most recently, do little to reflect the realities parents and families face (purely my opinion).

These shows don’t display the struggles to communicate; the fights with insurance companies for adaptive and assistive technology; the stress-bred exhaustion and seemingly constant struggle against a bureaucracy and population who seem to want nothing more than to make services more restrictive or remove them altogether. These shows don’t show the impact MEDICAID and SSI have, they don’t touch on the fact families with children who have disabilities may spend more than 10x’s the national average to raise their child.

There is no “right” answer, life isn’t that black and white. It took me a long time to realize this, and if I’m being honest it’s something I still struggle with. Life’s not meant to be “fair”, but it should be equitable. The majority of families are doing the best they can, a fact I would encourage everyone to consider before being quick to judge because you see a meltdown in the store.

To my fellow families – the struggle is real. Know the decision you made today is the “right” one, because you made it with all the information available to you at the time. It’s pointless to second-guess yourself or listen to those who could’ve done it better. Continue putting your best foot forward, don’t give up. Contrary to how it may feel, you’re not alone.

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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.

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.

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!

The Right Time is NOW

It’s so easy to justify putting something off, something else always seems to come up or there’s just no time. This is BULL, and if we’re honest with ourselves we all know it. There is never going to be a better time than right now to take action. “Need” to lose weight or save more? What does waiting until tomorrow get you?

Since I left the Navy and started my journey into the disability world with my son, I’ve seen (and been guilty of) entirely too much inaction. People will come to Resource Fairs and walk away with great information, but I can only wonder how many follow-up. Talking to some of my fellow vendors the number is nowhere near as large as we’d like.

I think this is because we let life get in the way – at least it was for me. I’d come home on a Saturday, with several folders of information, put them down and forget about them. It was information I needed, and I knew I needed, but I told myself I would get to it on Monday. Unfortunately by the time Monday got here I had not only forgotten about them, I was already overwhelmed with what the week was bringing – I wouldn’t have been willing to do anything even if I had remembered.

I broke this cycle by forcing myself to take 10 – 15 minutes when I got home, reviewing the materials and sending an e-mail to those I wanted to follow up with. This got the ball rolling, and when Monday came the responses I received ensured I followed through.

Sure, I put my name on the mailing lists; but more often than not I would just ignore the e-mails – not even replying to state I wasn’t interested because I felt like it took too much bandwidth. If this sounds familiar, I can tell you it’s not going to get any better on its own – all that will happen is time will continue passing you by, until some crisis doesn’t allow you to ignore it any longer.

So if there is something you’re thinking of doing, then do it. Don’t set it aside, because life doesn’t get any less busy (at least not in my experience). Frequently letting something sit will cause it to morph into something much bigger than it needs to be; making it even more likely you won’t take action. At some point YOU need to make a change, it requires an act on your part – well, probably several, because it takes time to make this into a habit.

So take a look at your situation and take action on the first thing you think of. Don’t spend time considering which item on a laundry list you should address, this puts you at risk of being overwhelmed by choices. Just pick the first thing that comes to mind, knock it out, rinse and repeat. Find an accountability partner, someone who will help you follow through – we all need one; it’s too easy for us to accept our own excuses. I encourage everyone to check out Mel Robbins’ 5 Second Rule; it helped put things in perspective for me.

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!