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.

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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.

We’re Not Atlas

In Greek mythology, Atlas was tasked with holding up the heavens on his shoulders (Atlas, 17 Dec 2016); and as parents of children with challenges (emotional, physical, neurological, etc) I believe it’s easy to feel the same way sometimes. It can be so easy to get caught up in our own world, believing no-one else can understand or relate. And unfortunately, this may very well be true as it pertains to your current circle of friends and family.

But you’re not chained to these circumstances – no matter how overwhelming it may seem. As I’ve stated in past posts, it takes just one step forward to start overcoming inertia. Make the time to go to a resource fair, or read (listen to an audiobook); anything to get you out of your own head.

I’m biased, I don’t want to hang around with people who acknowledge how hard I have it – this isn’t helpful to me. Yes, I’m a single father of a child with a disability, and I happen to have some of my own challenges as a legacy from my time in the service (don’t we all?). But none of these define me. I have the same 24 hours in a day as everyone else, and although I may get less sleep (not by choice), ultimately it’s up to me to decide how to use my time.

We’re powerful, all of us – not just those of us who have challenges or family members with different needs. Each of us has different strengths, and weaknesses, so although it may feel really great to share how “hard” things are, nothing is going to get “easier” unless/until you do something to change your circumstances. If you “can’t”, then look for someone who can. Find someone who has overcome a similar challenge – I will guarantee you they are out there; although you may not hear them shouting from the mountains.

In my experience those who get things done, just do them. They don’t spend much time bemoaning their current situation with a “woe is me” attitude. Sure, there are probably pity parties – life sucks sometimes. But you can either wallow in it, or you can get help to pull yourself out. Notice I did NOT say you can pull yourself out ALONE. If you could do this alone it would already be done.

As much as it may feel like we are alone in this world, and we’re shouldering more than our fair share of problems, understand this – there is someone, somewhere who has it much worse than you and is getting it done. I think all of us are stronger than we give ourselves credit for; but I also think we allow ourselves to believe we’re beaten or overwhelmed because it’s often the easier road.

You’re not alone. There are people out there who have overcome some incredible disadvantages and challenges – what can you learn from them? How can you ask them for a hand-up (not a hand-out)? Who do you know who has overcome their own challenges?

Better yet, who do you know who is in the midst of challenges, and you think to yourself “man, they’re lucky that’s all they’re dealing with”? Go to them, offer your help. And while you’re helping open your mind to possibilities. What can you take from this experience to help in your own situation? Is there anything they can do to lighten your load? There are a LOT of people in the world, there is absolutely NO reason you should solve problems by yourself.

Entitlement

I’ve heard a lot of discussion, for and against, government forms of support – Medicaid, SNAP, housing, etc. Most of the comments seem to focus on who should or shouldn’t receive the help – but none of those making the comments fit what I would see as “qualified experts”; which to me is individuals who have worked in these spaces or are experts on the benefits themselves.

It feels like there is a LOT of anger about those who don’t “deserve” benefits receiving them. In fact, on more than one occasion I’ve been told the government is doing “too much”; and everyone seems to have a story about someone they know who “deserved” benefits not being able to receive them. Yet when I ask clarifying questions to understand what led to the benefits being disapproved I’m met with disgusted looks and/or change of topics.

As I’ve said before, I do not doubt the system is being abused. I’ll even admit it’s “broken”; but I believe we should look at making repairs and tweaks – rather than do away with the entire thing. Let’s focus on Medicaid to provide a concrete example. And we should be very careful about what changes we make – beware unintended consequences.

Medicaid is health insurance for those with disabilities and the destitute. There is discussion in progress cut $1.4 Trillion (with a “T”) in Medicaid (See Article Here). Sounds reasonable – save the government money. However, this could force States to reduce their funding, hurting those who need assistance most. “The Congressional Budget Office estimated on a preliminary basis that Graham-Cassidy would result in the loss of health insurance coverage for “millions,” cap federal Medicaid payments to states, and give states the option of imposing work requirements on parents with children over age 6 (Andy Schneider, 2/12/2018).”

Yes, people need to work. But what if you have a child with significant support requirements, and one of the parents is a full-time provider? This occurs more often than I think most people not impacted by a disability realize. These families are not advertising their situation, they are putting their heads down and doing everything they can to survive. In many cases they didn’t ask for this and without the extra funding face losing their homes.

Safety nets, like Medicaid and SNAP, are in place for a reason. If you find yourself begrudging someone of this assistance, ask why. In some cases it almost sounds like jealousy – yet when you peel the onion back those same individuals complaining have, more often than not, made some poor life choices putting them in the negative financial situation they are in – without the option of a government “bailout”.

Again, this is a generalization. Yes, there are deserving people who cannot get services. My son, for example, did not get approved for the amount of SSI I had expected and a few of the items I filed with the VA were found to not be “service-related”. There are processes in place to contest findings you don’t agree with; or you may have to learn to live with it. If you want to increase the odds of your success, talk to those who have gone before you.

But don’t fault another family for doing what they need to do to survive. You don’t know their circumstances – when was the last time you were completely open about what was going on in your life with a complete stranger (who wasn’t your physician)? Want to change the system(s), look for ways to create opportunities for those less fortunate than yourself. Offer hand-ups, not hand-outs – and stick to what you control. I think you’ll be happier for it.

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!

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.