Residential Alternatives

I’m excited – more and more of us (families with a disability) are stretching our wings and exploring options other than the “traditional” Residential or live at home until someone dies methods. Increasingly communities are recognizing the value individuals with disabilities may provide (full disclosure, I’m most concerned about I/DD because it impacts me more than others).

Yes, I feel there is work still to be done; because a housing unit built specifically to host a set number of individuals with disabilities isn’t – in my opinion – truly “inclusive”. But it’s a start, and I would prefer forward momentum rather than committees or discussions with no action. These units will uncover the good, the bad and the ugly; and, provided we keep an open mind and understand progress and change involves setbacks, they are going to show us a better way forward.

Alternatively, you could purchase a multi-family residence and let your family member pick his/her neighbors. If you don’t have the money, or don’t want to be a landlord, consider teaming up with another family – form a LLC/LLP and run the house(s) as a business. Key point – it NEEDS to be a BUSINESS. Someone is the landlord, and is ultimately responsible for the upkeep of the house.

This could be a great alternative, because your family member could have a stream of income from the rental properties after you’re gone. With planning, you could use a term life insurance policy to ensure the mortgage is paid off, rather than buying permanent insurance to provide the same desired income stream after you’re gone. Key point – this REQUIRES PLANNING.

My point – I feel you are doing your family member a disservice if your “plan” is to have him/her live with you until one of you dies. Regardless of what their disability is, most people have the desire (and more importantly the right) to make their own decisions and live their lives. And YOU deserve to live YOUR life. This is the 21st century, there should not be many of us who HAVE to live with the individual with the disability.

Please don’t misunderstand me. I am NOT saying don’t love your family member. I can hear the echos of “he doesn’t understand what I’m dealing with”; and I agree. But I will challenge you to take a step back and ask for an outside perspective, from someone who is not vested in your life as much as you are (so not necessarily parents, siblings, spouse, etc). There is HOPE, and it starts with a SMALL step – giving yourself permission to imagine life not being a full-time caregiver. Think about it.

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My Issue With Higher Ed

It seems like almost every day I’m hearing another depressing statistic about student loan debt and how quickly it’s climbing. It frustrates me, because to a significant degree this is controllable. I will concede the point it’s unlikely the majority of students will get through college without ANY debt, but I am raising the B******T flag on earning a Bachelor degree with more than $50k in debt (sometimes 6 or more times this amount).

I can hear the arguments now – but it costs a lot to become a physician and/or attorney – and  will not disagree. But not everyone going to college is in those particular courses of study. What is the stigma of attending an in-state community college for your 100/200 level courses? Unless you’re earning them in High School, I don’t see much value in paying the higher costs required at a 4-year university.

Or what about learning a trade? I refuse to believe I was the only High School graduate who didn’t have it “figured out”. I chose to join the Navy, because it offered me an opportunity to get as far away from Massachusetts as I could imagine (literally – San Diego, CA). This is not, nor should it be, for everyone; but neither is college.

Yes, unskilled labor jobs are drying up and it’s getting much harder to find work without experience. But you can get experience through apprenticeships, and get paid while you learn. It bothers me at a visceral level when I meet someone whose annual salary is less than half what they owe in student loans, because I don’t understand how they did this to themselves.

Where was their support group – friends, family, etc? Someone to challenge the belief they need to incur so much debt to better themselves. Or have we all sipped the Kool-Aid and bought into the belief the value of an education is directly correlated to how much you’ve spent?

It’s my belief there are a LOT of great schools, all across the country. Attend for the teachers, and the pathways they can open in your mind – after all isn’t that what education is all about? So I challenge you – students and parents alike: try a state school, or be so committed to your belief in the value of other institutions you do the work necessary to qualify for scholarships and grants. Let’s get rid of this belief the quality of the degree comes from how much you paid.

Be My Eyes

Be My Eyes isn’t the “traditional” non-profit I usually focus on each month, in fact I don’t think they are a non-profit. However they have an amazing mission and in my opinion could have a positive impact on anyone – either through becoming a volunteer or using their service.

Who They Are 

Rather than try to paraphrase or describe what Be My Eyes does, I’ve copied what I believe to be the key information straight from their website. “Be My Eyes is a free mobile app with one main goal: to make the world more accessible for the blind and visually impaired.” This app is available for Apple (iOS) and Android devices – Android’s version was released in 2017.

What They Do 

Put simply, they partner visually impaired individuals with those who do not have an impairment, via an app on their smartphones. The app does NOT place a limit on how much you can use it, and according to their website the service will “always” be free. The app matches individuals with volunteers based on language and time zone, ensuring there should not be any times a volunteer is not available.

What Else Should I Know

I encourage anyone interested in learning more to start with the TED talk (https://www.youtube.com/watch?v=IfeLJxCSLC0) and then visit the website. They offer a very comprehensive FAQ section for both users and volunteers.

Disclaimer

I am not an employee of Be My Eyes; 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.

Analysis Paralysis

We are often our own worst enemy. Too often I’ve had to sit by and watch people refuse to take action because they either feel they don’t have enough information or they can’t get off the fence of what the best course of action to take is – they’re afraid of what they’ll give up.

I don’t think I need to tell anyone this is no way to live – we’ve all seen what happens to squirrels on the road. No – I’m not implying our lives will have an equally tragic ending, but I unequivocally believe failing to make a choice is a choice, you’re choosing to be indecisive and ultimately missing out on ALL alternatives.

Trust yourself; or, if you have a past of poor judgment, build a circle of confidantes and trust their input (but they cannot and SHOULD NOT make the decision for you). It’s “old school”, but I believe it works – draw a line down the middle of a piece of paper, and label the side pro’s/con’s for each choice. Write it out, and don’t use one or two words to describe – instead take some time to really journal what excites/concerns you given the choice(s) you face. Train your brain to think these things through.

Most importantly, don’t look back after you’ve made your choice. This is where people develop a habit of second-guessing themselves; because they think the choice they didn’t make would have turned out so much better. In my experience this is incredibly difficult to quantify, because if you’d had the same information which is telling you the choice would have been better when you originally made the choice, it’s very likely that is the path you would’ve gone down. Since you didn’t, I think it’s safe to say you made the BEST choice given facts on hand.

Waiting to get more information can be dangerous, and how do you “know” when enough is enough? I will admit I may trust my gut too much, but over the years I’ve grown comfortable making decisions with very little information – sometimes the information just isn’t out there to be had; and other opportunities would’ve been missed I never would have known about.

It’s not “bad” to need a lot of information to make a decision, it’s when you don’t know yourself well enough to say how much is enough. For example, researchers are critical for the progress of medicine and technology; but if they don’t move their hypotheses into application then are they really helping?

Some ideas I’ve seen help others include: checklists, the pro’s/con’s list and eliminating smaller choices to free up bandwidth. For example, I hang my dress clothes in such a way I don’t need to think about what to wear – I just grab the next dress shirt and pants hanging in the closet. When I put them away I make sure they match. This is a very small choice (for some), but it frees up bandwidth – and there are a LOT of these little things you can do, so when the big choice(s) occur you are ready.

Understand Limitations

Historically I’ve written about ways to stretch yourself; but today I want to highlight the importance of understanding your limitations – and working within them. Not just yours, but those of professionals you’re working with, who may not have acknowledged they have any or at the very least are unwilling to admit they do to you.

This comes, like all of my writing, personal experience. A non-profit I think very highly of is offering planning and advice. Now this is not part of their mission statement (as I understand it); but I believe it is coming from a place of caring and recognizing a need. My concern is they could do more damage than help, especially if they do not have staff with the proper training or experience.

On the opposite side of this coin is a family who is declining help because they don’t want to pay for it; they’d rather do everything themselves. Even if they’re able to handle everything on their own for their child, I would consider this to be short-sighted; because in at least half of the cases the child is going to outlive the parent(s) – and then what happens?

In the first example, I do not want people to think I’m saying don’t work with non-profits or other organizations. Rather, take the time to understand what their strengths are – we all have them. You don’t go to McDonald’s for the same reasons you eat at Umami Burger. As long as those strengths overlap areas you need help, or want to outsource, then you’ve found a good potential fit. From here it becomes about drilling into the cost vs perceived benefit. If it’s truly important to you, then consider it an investment, not an expense.

In the second case, I challenge you to exam your “why”. Are you trying to pinch pennies, or is this really your strong suit AND best use of your time. What is the contingency plan if something happens to you? Again, not saying you can’t or shouldn’t do something yourself; but understand life happens and if you’re doing it yourself you will need to build in contingencies.

Don’t underestimate what your time is worth, especially when measured in how you spend it with your loved one(s). Also, don’t take everything at face value – even if you’ve been working with an agency or organization for years. Due to the changing political landscape and the threats funding faces, many organizations may be overreaching their true capabilities. Not because they want to take advantage of anyone, quite the opposite (in my opinion). I believe this is happening because they want to HELP, and are doing whatever it takes to keep their doors open to assist populations who may not have anyone else.

Bend, a Little

I’m worried I may sound like a broken record, but I’m incredibly passionate about people with disabilities and their families experiencing more than I feel we do. Yes, it’s exhausting and you have to be “on” all the time; but that’s not your child’s/loved one’s fault – there are options available in most states for some kind of respite.

Before you start typing the response of how there is “nothing” where you live, ask yourself how do families without disabilities do it? They need date nights to keep their relationships fresh, they may be single parent households or have both parents working and are juggling getting their kid(s) to/from dance, sports, etc. How do they cope?

Yes, their children do not have disabilities – so what? Why are we letting the disability define what we can or cannot do? For years my wife and I wouldn’t go out to dinner, because we were afraid of meltdowns. I go out now, and it’s taken a LOT of work to help my son understand his boundaries – and I work with him while we’re out. I wish I could say I was a shining example of this, but at best I’m a flickering candle. I still consciously decide not to do things with my son because of the emotional toll I THINK will occur.

This is the important part – I “THINK” it will occur. I haven’t actually given myself the opportunity to be proven wrong. And, because this is my mindset, I find myself looking for reasons to be proven correct – creating a ridiculous loop, unfair to me and my son. One way I’m working on this is taking him places I know he enjoys either before or after an errand I need to run where I’m unsure of how he’ll act. Yes, not ideal – but it’s a start and it’s changing my internal narrative (which is the important piece imho).

I’m also working on creating “natural” supports. We will meet with the new school’s program soon, and I think this will provide him opportunities to form friendships and gain exposure. I am also looking for ways to expose him to new things to foster hobbies, with the long-term goal of either dropping him off or having him Uber (ideal). These things take time, and very few of us fell in love with something the very first time we did it – so I’m reminding myself to be patient with my son as well.

My challenge to all of you – what is (1) small thing you can try to improve YOUR quality of life? Little changes can have an enormous impact, if you’re open and patient enough to see it through; and be okay with it not working out exactly as you’d planned.

Beware What You “Know” is True

I’ve selfishly avoided looking into therapy for my son because I felt he “doesn’t need it”. He has stated again and again he doesn’t want to see a doctor, but I question how much of this aversion is coming from truly understanding what I’m asking versus the cues I present when I talk about seeing a doctor; and the fact he has been through a LOT over the last (6) years – Neurologist, Geneticist, and a bunch of other specialists as we tried to uncover if he was susceptible to the genetic disease that killed my wife (appears he is not).

And, if I’m being completely honest, I do not speak well of mental health professionals. I absolutely believe in what they do, and I think there is a very real need. My issue is the lack of an “end” with many of the ones I’ve met. I’m a black/white start/finish kind of guy; so I want to know how something may be judged complete – I don’t want to feel I’m being strung along so somebody can keep getting paid (jaded, yes – I own this). This feeling goes double for my son, because I have difficulty deciphering what he’s trying to communicate. The last thing I want to do is “trap” him into a never-ending loop.

As I write this I realize just how broad of a characterization I’ve made about the mental health field, and I can only shake my head. Here’s a guy who has always prided himself on being very open-minded, yet nothing I’ve written indicates this tendency. I think some of this may come from my time in the military, when you were ostracized if you even mentioned mental health (things have gotten much better from what I understand); and even more from my lack of understanding of how these professionals work.

The “why” is a challenge to be addressed on another day. I’m writing it out because I want others who may feel similar to know they’re not alone. Although I’m leery about scheduling an appointment for my son, things have progressed far enough I’m more nervous about not scheduling one (or as many as it takes). As with so much else I write, my intent is to help others avoid my mistakes – in this case don’t wait until things get “extreme”.

It seems too easy to justify not doing something, especially if it’s not for yourself. I’m sure I’m not the only one who downplays situations because I “don’t have the bandwidth” or whatever my excuse du jour is. Mental health professionals deserve much more credit than I have been giving them, rereading this post really opened my eyes to how deep my mistrust of the field goes (and how much work I need to do to unpack the “why”). I will be making an appointment for my son, and let someone much more qualified tell me if he needs to talk or if it’s “teenage angst”. My hope is others who feel as I do are equally willing (or more) to have their preconceptions and strongly held beliefs challenged.