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.

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!

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!

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.