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.

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ABLE Accounts & You

One of the most frequent questions I still get is “should I get an ABLE account or a Special Needs Trust”? And the answer is, generally, both. There is a lot of potential to use them in a complimentary fashion, although there may be some instances where it’s more effective to just get the Special Needs Trust.

As a brief recap, or intro for those that are not familiar with ABLE accounts, here is a quick overview. The ABLE National Resource Center has done an amazing job compiling information about ABLE accounts, including a map allowing you to select each state; and run a comparison of various accounts. If you haven’t yet, I encourage you to check it out, here’s the link: http://www.ablenrc.org/. I will deliberately not be diving into what an ABLE account is, how you set one up, or its requirements in here.

ABLE accounts allow individuals with disabilities to accumulate up to a maximum of $100,000 while receiving SSI. Should the individual’s account exceed $100k, their SSI benefits will be suspended – but they will maintain their Medicaid. As of June 2017 you can only contribute $14k per year to an ABLE account.

Some ways I would incorporate them into a family’s plan include:

1) Saving an individual’s wages.

2) When charging a family member rent to maximize SSI, gift up to $14k back.

3) Use as a mid to long term investment vehicle for larger purchases insurance doesn’t cover; for example assistive or adaptive technology.

4) Housing or food costs (using a trust could jeopardize SSI).

These are examples, and don’t come anywhere near touching on everything it could be for. ABLE accounts are designed to help individuals with disabilities increase their level of independence and do more than just “survive”. Individuals do not have to justify their spending to a trustee, although they should be tracking what they spend the money on – and from what I’ve seen the accounts themselves provide tools for this on their websites.

In my opinion, ABLE accounts are fantastic tools; but do not replace the need for a Special Needs Trust. I encourage families to think outside the box – instead of focusing on what our children/siblings can’t do let’s start imagining what they could do, with the right supports. Disability rights momentum is gaining, there are opportunities for our children now which didn’t exist just 10 years ago; and it’s my hope this continues exponentially.

You can do your part by having a willingness to accept there may be failures, and the change may not be pretty. Sure, there is a possibility the money in an ABLE account may be spent frivolously; but in my opinion that’s just part of being independent (not that I’d be happy about it). Can any of us honestly say we’ve never wasted any of our money?

All I ask is this. Instead of immediately saying to yourself “my son/daughter could never…”; replace it with “I will let my son/daughter try ___________, and though they may not be successful right away (few of us are) I will continue to be supportive”. The reality is there will still be things outside of their capability, at least for now. But technology is evolving, providing capabilities I never would’ve considered. As one example – the app “Be My Eyes“.

Circling back to the ABLE account, you don’t need a financial advisor/planner to set one up; I opened my son’s in Virginia (Maryland’s isn’t available yet) and I found it very user friendly. If you’re not sure how an ABLE account will tie into your overall plan, or if it’s right for you, then consult with an advisor/planner – but make sure they understand special needs planning; because we are not the same.

 

Walk before you Run

I don’t think very many of us step foot into the gym after a prolonged absence and decide to push yourself as hard and as fast as you can – at least not more than once, especially if you’re older than 40. We know, or at least have a fair idea, if we did it would not be pleasant (to put it mildly). Yet many of us are so quick to think other aspects of our lives, specifically financial, would be any different.

I get it, I hear many of the same “experts” telling us we need to save more and spend less – and we do! But, and this is a very big but, you should not think you can suddenly do a complete shift and sustain it. You need to train yourself, just as you would if you were going to run a marathon.

Saving/spending are just as much habits as smoking or making coffee every morning (my personal vice). Yes, in a perfect world all of us would be saving at least 20% of every check towards clearly defined goals (retirement being just one of them); but this isn’t a perfect world – we all have other “stuff” going on that can distract us. So rather than try to make a drastic change, and then quit because it’s too hard, start smaller.

Although transportation and housing make up a significant portion of our spending, many of you reading this are probably not in the market at this time – so there probably isn’t much opportunity to reduce your spending here. However, if you are in the market, or if you haven’t looked into refinancing and you’re mortgage rate is over 5%; here are a few things you can do to help yourself.

Aim at keeping the house and auto payment down. If you have to finance a car for 60 or 72 months, consider a less expensive option. Cars are depreciating assets – meaning you will never get the money you put into it back. Refinancing your mortgage could free up some cash – and since you’re used to not having it go ahead and put it directly into a savings/investment account; don’t spend it.

For the rest of us, track how often you buy something every day/week. For now, don’t worry about how much you’re spending, this is to determine your purchasing habits. For everything you buy make a note of “need” or “want”. What drives your purchases? Are there certain times of the day you are buying more frequently, is it just super easy because your card info is saved on the website? These are the types of questions you should be asking yourself.

From here, pick one thing to change and commit. Maybe it’s deleting your card info from Amazon Prime, or you don’t hop on the computer right after work because it leads to retail therapy. Whatever it is, just make (1) small change and stick with it for at least (3) months. Easy way to track – Federal holidays. If you start something around the 4th of July, next step is reevaluate around Labor Day or Thanksgiving. No reason to make it super complicated, the easier it is the more likely you’ll follow through.

What you shouldn’t do: don’t suddenly increase your 401(k) from 2% to 15%; that’s too much of a shock to your system. Don’t tell yourself “I’m just not going to shop anymore”. That’s a punishment, not a constructive realignment of your attitude and behaviors (fancy talk for making yourself miserable). If you’re in a committed relationship with joint finances – don’t make any changes on your own. Have an open dialogue, and if necessary, use an impartial 3rd party to help steer it. Pick a pace that leaves you a little uncomfortable and get started. There’s no better time than now.

 

Nothing Wrong with Simplicity

I think we make our lives more difficult than we need to – in all aspects. Almost like we think we’re doing something wrong if we can explain ourselves in one sentence. But in my opinion, this is what we should be striving for. Life is complicated enough, I don’t feel like it needs any help from me.

More often than not I’ve found the mantra “keep it simple” has steered me in the right direction – even (or especially) when I’m working with clients. To be clear, you must absolutely do your due diligence when considering alternatives, but I’ve found those that you can easily understand and require the least amount of effort will often work.

This shouldn’t necessarily be applied when pursuing a degree or picking a home to live in for the rest of your life – because there is usually a lot of other things to take into consideration. But how you pay for school, or the home, shouldn’t be that complicated or fancy.

Call me boring, but I like to set things in place and then forget about them – secure in the knowledge that it’s doing what it’s supposed to do. Saving for college in a 529 plan – why not pick a target date fund with the year closest to when you’ll need the money? The same goes for your current employer sponsored retirement plan. Both of these will likely have a bunch of other options available, and not necessarily anyone available to help select what works best for you.

Alternatively you could hire someone to take care of it for you; my only input being make sure you understand what they are doing. This can apply to having a housekeeper, landscaper or financial advisor – in each case you’ll want to be very clear of your expectations, and understand what they will be delivering. Once the ground rules are laid, you can shift your focus to other things – circling back periodically to check on things.

Think Bigger

I think it’s safe to say all of us have something we want, but don’t yet have – be it something personal, professional, spiritual or financial (and any other category I may have omitted). When was the last time you took a step back, asked yourself what you were waiting for, and were sincerely satisfied with the answer?

I like to think I’m a pretty motivated guy, but a recent health scare led to me evaluating some choices I’ve made and asking myself if I made them for the right reasons. For choices I’ve acted on, I was 100% satisfied – however there were plenty of things I “haven’t gotten around to, because I’m too busy” that I had to call myself on. There were also some choices I’d executed where I think I held myself back, didn’t let myself stretch for fear of failure and/or rejection.

How do we get around this? Well, if you listen to enough “experts” you’ll hear  you just need to push through it. The problem I’ve always had is there is nothing to leverage yourself against to help with this “push”. So I recommend finding someone you trust, who believes in not just what you are currently doing; but also sees the potential you have. Share your vision with them, and ask if they’d be willing to help.

The argument I hear for this is “what’s in it for them”? “Why would they help me?” And a few others, but I think you get the idea. The simplest answer – by helping you realize your goals, and watching you stretch; you’ll expose them to bigger thinking and help them find the courage to attempt their own “stretch” goal(s). During your journey you may have to shift who you work with, either because they may not know how to help you grow, maybe they haven’t gotten far enough themselves or you find your dynamic together is much better as friends.

This is all okay, and to be expected. We all grow at a different pace, the key is to never stop. Thinking bigger doesn’t mean running for public office or starting your own company, it could be as simple as committing to save an extra $5 or $10 each week, or sticking to your grocery list. If you set small goals, increase them as you achieve them. I think starting small makes the most sense, because it creates positive momentum. Setting small, easily achievable goals outside of what you are currently doing will show you can do it!

You don’t have to start tomorrow, but definitely commit to a day and start. Get a wall calendar, or make notes in whichever digital calendar you use, to track how you’re progressing towards your new commitment. Setbacks are only failures if you give up, expect to have them and commit to not letting them get in your way. And it’s not a failure if you attempt something and find it’s not your “thing”, as long as an honest effort was made.

Much of this may sound like stuff you tell your kids, or teams you coach; no surprise – it’s how we help them become successful. It begs to question why we are not doing the same for ourselves. Take a chance, set a commitment for something huge – and then set smaller incremental commitments that will get you there. Find an accountability partner, a trusted advisor and/or friend. Track your progress, and be prepared to blow your socks off!