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.

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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.

Find Yourself

I take great pride in my belief “I meet people where they are” – and this got me thinking, do I really? What does this mean? Is it enough to ignore your preconceived notions (I think we all have them); or do we need to be more proactive? Are we asking too much (or worse, too little) of others – and of ourselves?

Let’s unpack all this, starting from the last sentence. How many of us are in a hamster wheel – we get up, go to work, come home, go to bed, rinse & repeat. Maybe we wonder if there’s more, or maybe this has been burned out of us by “life”. Most, if not all, of us had big dreams and visions of what our future looked like when we were children – what happened? Okay – I acknowledge becoming an astronaut was a reach (and after living on submarines not something I yearn for any longer); but where did the sense of wonder and desire to stretch go?

Speaking for myself, I found it with the passing of my wife. This was the wake-up call I needed – I had allowed myself to accept my circumstances as the only way they could be – forgetting the person responsible for my success and happiness was myself. Then I noticed how others seem to look to me for approval; my acknowledgment they’re doing what they should be. In a VERY limited way I can give them this (if it’s true); in the sense I can acknowledge what they are doing and whether or not it seems to be furthering them towards their goals – but I CANNOT tell them they are on the “right” path for their lives.

To me, meeting people where they are isn’t blindly accepting them – warts and all. In my opinion it means holding a mirror up and helping them achieve the best self THEY want to be. NOT who YOU (I) want them to be. I cannot communicate how strongly I feel about this. Not going into my backstory, but it took me a LOT of years to find myself; with too many wrong turns and false starts along the way.

My son knows he is different, he knows he has Autism; but I don’t think he understands. At first he blamed his inability to do things on his diagnosis and it seemed like he beat himself up (we have challenges communicating); however he has come to understand (I think) difficulties in life are normal and everyone (including super dad) faces them. I do my best to acknowledge his frustration while doing my best to help him find alternatives and supports.

I believe we ALL have things we’re not good at, and if we allow ourselves to focus on those we are keeping ourselves from realizing our potential. I feel too many of us live our lives for others, believing we are meant to help them find happiness. This is a noble calling, and I’d ask you to make a minor (but not easy) tweak. If you truly want to help others, work to help them learn how to be happy with themselves. Teach them how to accept who they are; but first ensure you have taken the time to learn, and be okay with, who you are.

Employment for Differently Able

I want to start by saying how proud I am of Kayla McKeon for making it as a lobbyist – a very demanding job (Klein, 8 Jun 18, Washington Post). I’ve come across other well-spoken self-advocates over the years, including several whom I had the pleasure of serving on Boards with. But I think more can, and should, be done.

While success stories, like Kayla’s, warm my heart; the unfortunate truth is there are many other individuals with disabilities who are not employed. According to the Bureau of Labor Statistics 2017 Economic News Release employment of those with disabilities was 18.7%, compared to 65.7% for those without a disability (US Dept of Labor).

These numbers should shock you – as a father of a son with multiple disabilities frankly they scare me. There’s a glimmer of hope because the study also found “Employed persons with a disability were more likely to be self-employed than those with no disability.” To me this means if we want our friends/family members to increase their odds of successfully entering the work force we need to be looking for gaps they can fill.

Some of the more common areas are landscaping and food service, but as technology advances I believe more and more opportunities will present themselves – if we think outside the box. Manufacturing could be done in your basement with a 3D printer, after finding a niche market too small for big brand companies to go after. Or, perhaps you could establish yourself as a tutor or online language instructor (teaching people your native language).

I have faith companies will become more comfortable hiring individuals with disabilities, but it’s going to take time. It’s also going to require those in position to hire to get away from cookie cutter solutions – not every hole will be filled by the perfect square or round peg. Most of us are making accommodations of some kind when we hire now, it’s rare to find the “perfect fit”. So rather than letting the disability be the focus of your attention, look for what they CAN do.

How? How do I suggest people do this? First, by spending more time around people who have differing abilities. Stories like Kayla’s help, but we have a LONG way to go until it stops feeling like a novelty and more like “of course we hired so and so, why wouldn’t we?” Families and friends – highlight what individuals are doing, without qualification (such as “despite their disability” or something similar). Most people want to work, and have skills they bring to the table. Making accommodations should not be confused with making work. Look at what your company needs, and get creative about how those needs may be met.

Independence Isn’t Automatic

I worry sometimes, because it feels like there is a huge push to get children and young adults involved in as much as possible, but it’s the parent(s) driving the issue (in most cases). When our children are young, this makes a lot of sense – they don’t have many experiences and most likely don’t have any idea what they would like or not like.

However, rather than backing off, I’m seeing many parents keeping themselves firmly entrenched – in some cases until their child is in the mid-twenties. And I don’t draw a distinction with my concerns between parents of children with disabilities and children without. A disability is not a definitive statement of what someone can, or cannot, do. It’s an invitation to determine what supports the individual(s) may need to achieve the same (or more) success as those without the disability.

I’m not a “parenting expert” – I’m a financial planner and I have gotten very good at finding resources for myself and others (Special Needs Navigator). These concerns stem from working with clients and personal observations. It appears the default reaction for many of us is “I’ll do it (for them)”. How does this teach anyone to become self-reliant?

Instead, I challenge everyone to give up control of at least (1) thing every 3 – 4 months. Start small, and base it on the age and current ability of your child. It may be as simple as “what are you making for breakfast (not what do you want)”? Or, start teaching them how to grocery shop – by making a list. Let them tell you what they want, and rather than saying “no” immediately when they ask for “garbage” (I have a teenage son); take some time to help them understand what it means to eat food that is bad for them – in as simple terms as it needs to be.

Or, you make the list but enlist them to help determine what needs to be bought. Show them how to check when to buy – maybe it’s because you only have one roll of paper towels left. You could even put a sticky note on the roll saying “buy more”, as a scaffolding tool (lay the foundation).

Yes, it will more than likely be more work for you, in the SHORT term. But we’re not going to be around forever, and if your son/daughter can’t (or won’t) do things for themselves what kind of life are you setting them up for? Again, this isn’t limited to those with disabilities, although I feel like we (families who have a child with a disability) may be guilty of this more than others. Please, I implore you, give your children power. Don’t quit because they don’t get it right away. New skills take time, and in some cases, supports. Start with low hanging fruit and work up. You’ll thank yourself in the years to come.

It’s Not For You

I think it’s sometimes easy to forget, or overlook, that individuals who are in our care because of the disabilities or challenges they have, are in fact, people with their own wants & needs. I don’t think it’s done consciously, I believe it comes from a place of trying to do the right thing – as you understand it.

But I’ve heard people say they won’t do something because it’s too difficult or they don’t need it. While both may be true, it’s important to remember everything is for the individual – not the caretaker. In most cases the individual will need to provide for themselves at some point, and getting their benefits established as soon as possible is in their best interests.

If it’s too difficult for you, or you don’t have the bandwidth, find someone else to do it. No judgments – it doesn’t make you a bad parent or less of a person; quite the contrary, admitting you don’t have the capability and a willingness to outsource shows strength, commitment and love.

 

A Mothers Rest (Update)

I’ve been doing my best to introduce a different non-profit each month, however A Mothers Rest has started a capital campaign to provide 24/7 respite services in Maryland through the purchase of a Bed and Breakfast, and I felt I had to help get the word out.

For those who haven’t heard of A Mothers Rest, here is a brief overview – taken from their website.

“Extra Needs” includes so much more than just physical & cognitive differences.   It’s not just Down syndrome, CP, & autism.   Families facing injury, trauma, medical crises…abuse, abandonment, neglect…children who have been adopted or been through the foster system….children who are experiencing addictions…. We also support special educators and caregivers of disabled SPOUSES, such as wounded veterans and victims of illness and injury.

To the best of my knowledge, this is one-of-a-kind. I’ve been on a retreat, admittedly I didn’t come out of my room for the first day because it felt so good to be truly “alone”; but I had a great time and alone time is what I needed.

They are looking to purchase a Bed & Breakfast in New Windsor, MD to host families from around the country. They will continue to coordinate other retreats for mom, dad’s, couples and caregivers; the Inn will serve as a “home base” and model for future growth.

I encourage anyone and everyone whose life has been impacted by an individual with different needs to check A Mothers Rest out. Take a retreat, sometimes we get so caught up in what we need to do for others we forget about ourselves.

I’m not a Board member of A Mother’s Rest, but I am a single father of a child with disabilities and I have experienced burnout first hand. I know what it’s like to get so frustrated you just want to lock yourself in an isolation chamber (or go back on deployment) to get some peace – and then feel guilty. We’re human, A Mothers Rest is doing its best to let us reset.