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.

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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.

 

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!

When Is Your “Independence Day”?

July 4th is Independence Day for those of us living in the United States, and it brings to mind thoughts of what independence means – is it the same for everyone; or, as I suspect, do each of us hold our own ideal close to our heart – perhaps never sharing?

Certainly, the freedoms guaranteed by our Constitution mean a LOT to me, I’m proud of the years I served in the Navy; but I don’t consider myself truly “independent”; at least, not yet. In my mind I won’t be “independent” until I’m confident my son will be able to have a life worth living on his own – this should not be confused with “surviving”. Until this happens, he’ll be dependent upon me; which to me means I’m not “free”.

This is not a pity party or a complaint, but it is my reality – and I think for many of you reading this there is a similar reality. I think we plan our whole lives for when we don’t have to answer to anyone, when we can just do what we want when we want (well, I KNOW this was my plan). However, reality is seldom so black and white.

My “independence day” is on the horizon, and I have a strong belief I will live to see it – my son’s own independence continues to grow in leaps and bounds; and thanks to technology things we once thought would be insurmountable can either now be done, or will be achievable in my lifetime, without much more effort than it takes to open an app.

For those of you reading this – what does freedom mean to you? Are you doing everything you can to achieve it; or are you waiting for someone else to give it to you? If you’re waiting, don’t! To the best of my knowledge independence has never been achieved without a LOT of effort from those desiring it. I’m not suggesting you storm the ramparts or take up arms against the establishment; but if you don’t at least contribute the achievement of your goals will you truly value them? Heck, will you even recognize when they come true?

So set your sights on what freedom means to you, and map out a strategy to get there and get moving. If you’re fortunate enough to have achieved your freedom, extend a hand and help others – encouraging words go a LONG way, so don’t be shy or afraid to offer praise. Celebrate the little victories, and don’t let losses bog you down – learn the lessons they are meant to teach and forge ahead. Finally, remember it’s hard to know you’ve arrived at your destination if you’ve never identified where you are going.

A Mother’s Rest – Retreats for Families of Children with Extra Needs

A Mother’s Rest was founded to give families a chance to get away, by a mother who understands what families like ours experience daily. I’ve never used respite, when my wife was alive I don’t remember it even being a conversation – and it wasn’t because we didn’t want it; I don’t recall ever hearing it presented as an option. I think many families are like mine – we would love a rest/break, but don’t know where to go or feel we can trust anyone else with our children. A Mother’s Rest answers where to go, it has partnerships with B&B’s across the country; and they are actively working to form partnerships with organizations, like Jill’s House, to provide child care.

Who They Are 

“A Mother’s Rest is designed to be a quiet, peaceful sanctuary of fellowship for myself (founder) and others who really understand the fatigues that can come with special needs parenting”. (Retrieved from https://www.amothersrest.org/thefounder).

I think what appeals most, to me, is their belief “RESPITE is not only a period of time, it is a place and a feeling. It’s a reprieve, even if short-lived, from the hardships of everyday life.” When I was on Active Duty my wife was often living as a single mom, and at the time I had no idea how stressful it may have been – now as a single dad of a teen I’m learning first hand about some, but certainly not all, of the challenges she faced and how important getting a break is.

What They Do 

A Mother’s Rest offers affordable retreats across the country, by partnering with B&B’s to give moms, dads and couples an opportunity to get away, unplug, and if desired, hang out with fellow travelers on our journey. Alternatively these retreats offer opportunities to completely unplug – the only agenda I’m aware of is recharging one’s emotional and psychological batteries.

Some other opportunities A Mother’s Rest include grants of up to $2,500 for children and adults with disabilities to attend day or sleep-away summer camps. What an amazing opportunity, not only as a break for parents; but as an opportunity for those attending to learn/improve their social and independent living skills. A Mother’s Rest needs your help to make this a reality – seeking volunteers and donations (more information found here).

 

What Else Should I Know

A Mother’s Rest is the passion project of a mom who is living it, she really understands what it means to raise a child with disabilities, and how important it is to stay grounded – for you and your child. If you have children, with or without disabilities, I believe you can relate to wanting to “get away”. A Mother’s Rest helps us do so; and they are looking to do much, much more. I encourage you to check out their website to learn more.

Disclaimer

I am not an employee of A Mother’s Rest 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.