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.


The Price of Convenience

I’m alarmed by a trend in the use (abuse) of debt I’ve seen over the years, and I believe it’s only going to get worse. Vendors are making it easier and easier to pay electronically – now you just have to swipe your phone. The accounts are typically linked to a credit card, allowing consumers to get instant gratification and delay facing the full cost “indefinitely” (assuming they only make minimum payments). I have a few issues with this.

First – the impact it is having on families’ financial health. The majority of households I come across are leveraged to some degree – car loans, mortgages, credit card debt, etc. And while I will be the first to admit the benefits to borrowing, it should not be forgotten you are using someone else’s money and ultimately they have control. Families are paying more in interest and service fees than they are saving for goals, like retirement, leaving nothing to show for the money spent.

Second – what is the next generation learning? Balancing a checkbook is becoming a lost art, as less and less people use checks. Instead, consumers are encouraged to automate their payments – so they don’t have to pay any attention, ever. Add to this the simplicity of subscription services and “free trials”; and before you know it you’re living paycheck to paycheck but don’t know where your money is going.

I’m not sure what schools are teaching children in traditional classes, but my son was taught how to count dollars and coins in his learning for independence classes. I will admit this could be important and help him get a job; however I think it’s equally important to teach about responsible use of credit, and the impact it has on your life.

It’s “painless”, people no longer have to ask themselves “can I afford this”? Instead, it seems to be “which card should I use, to get the best rewards”? Unless you’re paying the balance EVERY month, the only people being rewarded are the credit card companies. Credit scores are being considered in more facets of life, including in some cases auto insurance and utility bills – yet how many of us not only know our score, but understand how it’s calculated?

I worry for my son, because credit is so abstract. To help him be successful, I’ve resorted to purchasing gift cards, and tracking the spending using Google Sheets. It’s not perfect, and I think he’s a long way from mastering it – but it’s a start. Obviously this isn’t the solution for everyone, but I would encourage people NOT to automate their bills – because it doesn’t take that long to pay them; and, in my opinion, it’s worth the time spent to understand where your money is going.

If you’re not paying your credit card balance in full each month, ask yourself what you’re spending on. You’re living outside your means (or you did at one time). Focus on getting your spending below 90% what you bring home each month – start building yourself a buffer. Go through your statements, what recurring charges surprise you? Finally, look at what your credit cards are charging each month as interest – this is money you owe them and you will have NOTHING to show for it. Imagine if you’d put this money into an account for you?!


Child Turning 18, Don’t Forget These:

This will be a quicky, for all of us who have a child turning 18 – whether they are in school til age 21 or not.

Men – register for the Selective Service. Having a disability, regardless of how significant, does NOT waive this requirement. The website lists (5) reasons to register, most importantly (IMHO) is retaining eligibility for Federal & State services – college loans, job training, etc. Register here –

Everyone – register to vote. Having a disability does NOT mean you cannot make a decision, nor does it mean you shouldn’t have a say. Admittedly, some individuals may have cognitive challenges and this may not apply to them. Unfortunately, it’s been my experience parents do not help their child(ren) register or encourage them to exercise their right. And this is not just limited to families with disabilities. Here is a good starting point –

Determine level of impact the disability has. For I/DD, there is a gap in service between the ages of 18 and 21, unless the individual remains in school. I was hell-bent on having my son graduate, but thankfully his teachers and an advocate I hired all told me I was wrong – it would be in HIS best interest to remain in school until 21 b/c of his academic skills. This isn’t for everyone, so do your best to maintain an open mind (or get an impartial opinion).

File for SSI. Again, not a blanket statement because not everyone will qualify. However, if there is any chance your son/daughter’s disability will limit their capability to find gainful employment consider applying. When in doubt seek out a Disability attorney, the ones I’ve met have been very willing to provide straight-forward advice about whether there was a good case to receive SSI or not. Your child does NOT need to be out of school.

If filing for, or considering, SSI – make sure you get all assets out of your child’s name. This includes, but is not limited to – savings/checking accounts; savings bonds; cash value life insurance; coin (or other) collections; etc. They are allowed to own (1) car and (1) home. ABLE accounts and Special Needs Trusts are also allowed and will not impact your child’s ability to receive SSI.

This is a quick overview of things to consider, there may be additional items given your particular circumstances. It’s easy to get into “auto-pilot” when they are in school, but the game changes significantly when they age out or graduate.

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.

One Small Step

Our minds are amazing and powerful, and when applied properly can result in us accomplishing fantastic and unbelievable things. Unfortunately, almost all of us have, at times, allowed our brains to become our worst enemy. I doubt anyone does this deliberately, I think it’s hard-wired from more primitive days to keep us alive; but we should be aware and be ready to challenge it when it happens.

I have a few times that stand out VERY clearly – my son’s first diagnosis, my wife’s passing and my pending retirement. Each of these probably seems very obvious, I was facing a significant loss. But there have been less “obvious” times – halfway through a 5k, as I approach project deadlines or even when deciding if I should walk the dogs.

It starts innocently enough, the self-talk isn’t obviously negative; just an overview of other options or possibilities. For me, it didn’t take long for these thoughts to take on a life of their own – I’m creating whole dialogues and if/then end results; and suddenly I realize I’ve convinced myself the worst is going to happen and I haven’t even started down a path. When I was younger I missed opportunities because I wouldn’t give myself the chance to be successful and prove myself wrong.

It’s taken me years to accept my son has Autism, which is not (to me) the same as accepting his diagnosis. I have chosen to refuse to believe he cannot live a fulfilling, independent life. I have had to re-frame what “independent” means, because we all use supports – for some of us they are just less obvious.

Now, I take a different approach. I still evaluate the risks and weigh the pros/cons, I plan for a living so I doubt this will ever stop. But instead of allowing myself to go down the vortex of negative self-talk, I focus on the first step. After my wife died that first step was just getting out of bed, then getting into shower, etc. I literally broke every thing I did into single steps, and celebrated accomplishing them as a “win” because I needed to.

Every journey starts with a step, and no – we’re not psychic. We can’t know what’s around every corner, and sometimes life is going to hit you in the face with a cast iron skillet – and it’s going to suck, a lot. But this doesn’t have to remain your reality. What’s the next, small, step you can take to make things better?

For example – you hate your job. The next step isn’t “find another job” – this is too broad and can be overwhelming. The first step could be what do you hate about this job. Do you control any of it? If you do, what is the easiest thing you can change to make things better. Maybe it’s getting up 30 mins earlier or stopping at the gym on the way home to stay out of traffic. If there is nothing you have control over, then think about the first step to getting a new job.

What do you want to do which you have the skills for? Write out your skills and talents. Write out your nonnegotiable – what are the absolutes you must have for a healthy work experience (be realistic)? Pick one search engine (I like SimplyHired) and start looking. Be aware of your self-talk, and stop yourself when/if you catch yourself saying “I’ll never find something for my skills”; “there are no jobs in my area” or anything else not supportive of the efforts you’re making. These are not helpful, you are going to find answers supporting your beliefs – this is known as Confirmation Bias (Farnham Street, May 2017).

You DO control your happiness, because you control how you perceive and react to the world around you. Take your ownership back, one small step at a time.

Ideas to Stay Afloat

Some of the hardest conversations I have with people is telling them they cannot accomplish the goals they’ve shared with me; even worse are those I have to have a conversation with about how they can reduce their living expenses – foregoing the lifestyle they’ve grown accustomed to. It tears at me, because I wonder if they really had no clue or have they been in denial? Either way, it’s not easy being the harsh voice of reality.

How do they get there? How does anyone? For some it could be medical expenses, or other things they had little control over. However for most I believe it’s an unwillingness to delay gratification. It’s difficult to deny yourself, especially to set money aside for something that will “probably never happen”; but these rare events occur with frequency. Cars are going to require more than routine maintenance (oil changes, brakes, etc) – own one long enough and something major will need to be replaced. Mechanical systems break down.

Same is true with anything else in your life – from owning a house, to having a child. Childcare is expensive, I think most of us understand that. But what about clothes, hobbies, food (especially for teens). We should know these things are going to come up, but so many seem surprised by how much everything costs.

So what to do? Few of us are going to win the lottery, so how can we prepare. Start small – save money into both your retirement account and a “rainy day” fund. The retirement accounts are usually the easiest to maintain, because most employers will withdraw funds before paying you – so you never “miss” it. It’s the savings you have to be intentional about that’s more difficult.

If you’re new to saving, start with 2% of your income to the retirement account. No, this isn’t going to fund your retirement, but it’s small enough most of us won’t notice it’s gone. The goal is to scale over time. Same is true with the “rainy day” fund. Open an online account and start an automatic transfer set for (5) days after each pay check (6th and 20th if you get paid on the 1st and 15th). Generally this is far enough to provide a buffer if there are holidays, or other delays to the money hitting your account.

I’m partial to Ally, because they’ve made it very simple to enroll and they’re offering a 1.6% interest rate (as of 5/13/2018). However, I encourage everyone to do their own homework – I like Bankrate’s website. Start with an amount small enough not to be missed, but large enough to be meaningful. For most, I wouldn’t save less than $25/pay period – but you will have to decide your own threshold. The more you can afford to put aside, the better prepared you will be for life’s “oh craps”.

Build your support network too. Try to surround yourself with positive people – not Pollyannas, but with people who understand life happens and it’s best met on your own terms. I prefer to be around people who have overcome adversity, although they haven’t necessarily had my experiences. We keep each other grounded – allowing a brief “pity party”, followed by a shoulder and non-judgmental ear. This network is best built before you need it, because when you’re in a dark place it seems to mostly attract “Emotional Vampires” (Orloff, J, 18 Jan 2011).

The most important take-away is this – shore yourself up, using small steps. Take some time to get to know yourself – what sets you off and what makes you feel great. Surround yourself with people who can help you feel great, not small. And invest in yourself financially by setting money aside. Little amounts first, increase by at least 25% every quarter (if it helps, go by key dates: Martin Luther King, Jr Day , Tax Day, Independence Day, Halloween).