The Parents’ Place of Maryland

I’ve been researching resources since 2012, and I didn’t really know what the Parents’ Place of Maryland was until I met their new Executive Director, Rene Averitt-Sanzone, in 2017. I’d heard of them, but I didn’t think they were a resource I could use because I didn’t think they had a presence in Montgomery County (even though it has the State in its name).

Since meeting Rene I’ve taken time to research and learn more about The Parents’ Place, and I’m excited to share – I would like this to reach every family in Maryland who is looking for resources.

Who They Are 

The Parents’ Place of Maryland, like so many other organizations focused on helping those with disabilities and their families, was founded in 1990 as a grass-roots organization by families, professionals and community leaders. Their Mission (from the website) is “to empower families as advocates and partners in improving education and health outcomes for their children with disabilities and special health care needs”; and from everything I’ve seen they walk the talk.

What They Do 

The Parents’ Place of Maryland offers help in (3) distinct ways: one-on-on support, information & resources, and training programs. If you’re not sure they can help, reach out – if they aren’t the right resource, they can probably direct you to whoever is. Their information & resources page links to a library covering a host of topics, from bullying to transition (and SO much more!); a Services Directory and a Podcast offering “RealTalk for Parents”. The training programs are available to parents/families and professionals, but I wasn’t able to find a calendar highlighting what’s available so you’re best option (as far as I can tell) is to call and see what’s coming.

What Else Should I Know

Since they were founded, they have helped over 10,000 families and professionals – providing information, training and support. They’ve held over 70 workshops, and offered 10 conferences; and have sent over 300,000 informational and educational materials – with a staff of less than 15 and over half of their employees are “Parent Educators”.

Disclaimer

I am not an employee of The Parents’ Place of Maryland, 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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One Step Forward, Two Back

This week was rough – I’ve grown so used to my son preparing his own meals I seem to have forgotten he has challenges, brought on by his disabilities. What brought it home, in frightening clarity, was his failure at cooking a meal he’s been cooking for over a year – and more troubling – my reaction to it. I lost my temper, as if he was deliberately trying to screw up. I thought I had put this behind me, having been a demon I let guide me while Active Duty and only confronting after my wife’s illness and subsequent death.

I think most people can relate to this feeling, not necessarily because they have a child or family member with disabilities; but because I believe we all have things we are trying to improve or grow, and when we get angry at ourselves for “allowing” ourselves to slip. I don’t think we should just shrug and say “oh well”, but there has got to be a more constructive emotion than anger. Understand where the anger comes from, what is the root cause; and harness the energy to improve yourself.

For me, the root cause is my need for independence – not having anyone else dependent upon me, for anything. As much as I would like to believe otherwise, and will work towards; given how things are now my son will never live completely independently. I’m not willing to shift his care to an organization, although I will hire staff to assist after he leaves High School.

The difference, to me, is controlling who works with him. He’s incredibly capable, I’m both blown away and proud of how much he CAN do – and I feel like there is more just waiting to be expressed. My opinion (and it’s just that, I have no proof or facts) of organizations are they will do the best they can, but at the end of the day they are serving the masses and one individual could be lost. I don’t want that individual to be my son.

All of these thoughts and feelings create the stress that expresses itself in a loss of temper when my son seemingly loses ground. Seemingly, because I think it’s an unfair characterization. There are things I have done in the past I more than likely cannot do error-free anymore; yet I don’t want people losing their temper with me. All of us, in my opinion, have times when we lose ground. Maybe we’re trying to get healthy, out of debt or just want to be a better person; and we slip. Maybe we have a cigarette, splurge on something we don’t “need” or lose temper with our son.

The trick is not giving up. Accept we’re human, and mistakes will happen. Identify what caused the mistake – was it a decision/reaction or was it something really out of our control. In my experience there are few things truly out of our control, because we react – and we can condition ourselves and our reactions; through careful monitoring and honest self-assessment. I’m not suggesting we beat ourselves up (figuratively or literally); but I am a firm believer in truth – having made more than my share of mistakes when I was younger. It takes practice, and practice takes time. Celebrate your wins, focus on how you earned them – so when there is a slip/backslide you will know which behavior(s) can get you back on track.

Be Accountable

If you’re being 100% honest with yourself, when was the last time you made an excuse for not doing something? In my opinion we’re all guilty of it, although the frequency varies. It’s something I’ve personally been focusing heavily on since losing my wife – that was the wake-up call I needed. Not that I was quick to avoid ownership when I messed up, but I could certainly have done a better job acknowledging my role.

It’s tough, admitting our fallibility – and it’s very uncomfortable (to me at least). There is a flip side, there are those who seem to take a perverse pleasure taking ownership of everything – almost martyr-like. This isn’t what I’m advocating, I just want more of us to acknowledge the influence we exert (consciously and unconsciously).

It seems like “it’s not my fault” or “it wasn’t me” has become almost a reflex – something I think most of us learned as children. When called on it we may even dig our heels in, becoming more defensive – so unwilling to lose face (if we’re at fault). With this in mind, what can be done?

I think there are (2) things all of us can do. First, knowing people’s propensity to go on the defensive, approach others understanding they likely didn’t do whatever it was maliciously. Try to understand where they were or what they were thinking. This doesn’t mean letting them get away with it, they need to be held accountable; but use an approach where they are more likely to be open and receptive (not an approach I was very successful with while on Active Duty).

The other thing is we need to be receptive to feedback. We’re not perfect, we’re going to make mistakes. We may be lazy, and need a push from time to time – understand we all have flaws and things to improve upon. If you don’t feel the feedback is relevant, after considering it, then don’t act on it. This is more constructive than arguing or being defiant. Stand up for yourself, but stick to the facts. Reacting emotionally will often escalate the situation, and seldom helps your cause (speaking from personal experience).

Like anything else this takes time and self-awareness. I believe you’ll be happier for it, and can incorporate this into all aspects of your life – from spending habits to being a partner in an intimate relationship.

Life’s Choices

Life would be so much easier if there was really audience participation – wouldn’t it? Then you could determine if you were making the best choice for your life by how the reaction you receive, and react accordingly.

I jest, yet I can’t help but feel that’s how life is. There is no end of well-meaning individuals who are quick to voice their opinion on what you should do with barely a glance at what your life entails or (seemingly) thoughts about possible long-term consequences.

Today my son and I saw a physician, to get the second opinion needed when filing for Guardianship. This has been an internal struggle since before my wife passed, with me on the side of supported decision making. Yet when I review the evidence before me in as dispassionate a view as possible (not cold, just trying to be impartial) – I think I’m fooling myself if I believe he is capable of understanding the complexities associated with some of the decisions adults make almost daily.

In some ways I envy my son his innocence, and wish the world were a different place. Somewhere I wouldn’t need to worry about someone taking advantage of his trusting nature, or not so rushed as to really take the time to make sure he understands exactly what he is agreeing to (he has a tendency to agree to please people).

As a widowed father of a son with disabilities it’s not just an academic exercise to contemplate what will happen when I’m gone. I think most parents have these thoughts, although I doubt they dwell on them to the extent I (and I’d guess many of my peers) do. I’m fully aware the choices I make today will affect him for his lifetime, not just mine. Shows, like the Good Doctor most recently, do little to reflect the realities parents and families face (purely my opinion).

These shows don’t display the struggles to communicate; the fights with insurance companies for adaptive and assistive technology; the stress-bred exhaustion and seemingly constant struggle against a bureaucracy and population who seem to want nothing more than to make services more restrictive or remove them altogether. These shows don’t show the impact MEDICAID and SSI have, they don’t touch on the fact families with children who have disabilities may spend more than 10x’s the national average to raise their child.

There is no “right” answer, life isn’t that black and white. It took me a long time to realize this, and if I’m being honest it’s something I still struggle with. Life’s not meant to be “fair”, but it should be equitable. The majority of families are doing the best they can, a fact I would encourage everyone to consider before being quick to judge because you see a meltdown in the store.

To my fellow families – the struggle is real. Know the decision you made today is the “right” one, because you made it with all the information available to you at the time. It’s pointless to second-guess yourself or listen to those who could’ve done it better. Continue putting your best foot forward, don’t give up. Contrary to how it may feel, you’re not alone.

Improve Your $ Habits

I want to acknowledge James Clear, it’s his image I chose as cover art – and you can learn more about his ideas at his website https://jamesclear.com/three-steps-habit-change.

I’ve been thinking a lot about habits lately, as I’ve committed to improving my communication skills through the remainder of 2017. I understand this won’t happen on its own – I need to actively work on changing my behaviors while finding ways to reward myself until I don’t have to think about what I’m doing any longer.

Another impetus for this topic is client-driven, over the last several months I’ve met with clients who have poor financial habits; and from what I’ve seen this is more common than not. Individuals and families do the best they can, but often they haven’t been given the tools to develop good habits; or they’ve identified things they want to change and try to change too much – becoming overwhelmed and giving up.

In my opinion the “easiest” habit to create is one that requires little extra thought or action on your part. For saving money, I ask people to find $25 – $50/mth, and set it aside somewhere they won’t spend it – that could be in an envelope in your underwear drawer or an online bank account w/o an ATM card; it’s more important not to touch it than where you put it.

Need motivation, tie the money to something else you’re trying to do. For example, if you’re trying to lose weight pay yourself $5 or $10 every time you decline dessert. The money will reward you for following your diet, so you’ll become more likely to stick to it. And saving the money towards something you really want will reward you for your discipline. Win Win.

You can use these same tools with your children, to help them develop healthy saving habits young. I understand some may disagree with rewards, because then you may only be doing something because of what you get – and I want to acknowledge that argument. However, my belief is if I can get someone to work up to saving $400/mth, even if they are using $100 each month to reward themselves they’ve still set aside $300 more than they were before.

This is one idea, and certainly not the Holy Grail of personal finance. There are many resources available – blogs like Paula Pant’s “Afford Anything“; “Mr. Money Mustache”, and J. Money’s “Budgets are Sexy” to name just a few; and just as many or more podcasts.

The key is not trying to change everything. Start with one thing, focus on it until it becomes second nature and then move on to the next. Having an accountability partner (and I know I’ve said this before) can be a HUGE help. Celebrate your successes, and don’t beat yourself up too hard when there are bumps in the road – it happens. What I believe you will find as time goes on is you will notice the bumps less; because your success has achieved a life of its own.

 

Take the Long View

I’ve found it can be incredibly difficult to plan for the long term, with all the noise and distractions vying for your attention in the short term. Something always seems to come up, tempting you by its immediacy. It’s because of this I think it’s critical we have a deep understanding about the what, when and why of our long term goals.

A common example I’ve been helping people with is where they want to live when their child is older. Understandably they don’t want to move while the child is in school, because of the possible disruption it could create. However, if they are considering a move to another State they could be hurting themselves by waiting; because most, if not all, States have transitioning youth funds set aside for young adults leaving High School at 21. Waiver programs are designed to give students automatic head of the line privileges; but this will not apply to someone who moves into the State after High School – they will have to wait.

The “noise” is people with good intentions encouraging the parents to stay, reinforcing the parents’ belief it’s what’s best for the child. And it very well may be, but it should be weighed against the need for continuing services after High School. There is also fear of the unknown – how will my child react, what will the school be like, etc. It’s a lot to handle, especially if you have other children and/or are a single parent – you don’t have to do it alone; there are organizations and professionals who can help.

I’m using one example, focusing on a family who has a child with Special Needs making a move; but taking the long view is just as relevant when considering whether to buy or rent (a house), when to take social security, when to retire, etc. Take some time to yourself, away from distractions, and think about what you want and where you see yourself in 20 – 30 years. Then back into it, how are you going to get there?

Write it down – it’s not meant to be set in stone, but having a written record will help you when those crises occur and you need to make an immediate decision. In the heat of the moment it’s unreasonable to expect yourself to be able to think about the future; but you should absolutely be able to look at what you had written and use it to help ground you. You may not change your mind about what needs to be done, but you’re no longer operating purely on emotion. Practice with routine decisions, so you build the habit and muscle memory kicks in when the poop hits the fan. I’m here if you need/want help.

Living Independently

As I continue to work on enrolling my son in Social Security, and completing the necessary paperwork with the VA and DFAS (military pay system), I can’t help but wonder what he’s going to do when I’m gone – and will this all be enough. Obviously we can’t plan for every eventuality, so we do our best to address as much as possible.

When we’ve finished applying for his benefits, my next focus will be on where he will live. There are many organizations throughout the country offering Residential facilities, and with Group Homes no longer authorized it’s a safe bet these homes will not have more than (4) residents; but we’ve (my son and I) decided not to pursue this route – because he doesn’t want to have a roommate.

There are also organizations creating communities of individuals with a specific diagnosis, I believe the most common is Autism. Although I think this is an incredible opportunity for some families, for me personally it does not meet the full inclusion experience I want for my son.

So what does this leave? For us, we’re looking at purchasing a multi-family home (duplex). While I’m alive, and able, I will work with a property management company to rent out the other unit (I don’t like doing maintenance). When I’m gone, either I will have paid off the mortgage or the life insurance will settle the debt; either way ownership of the property will transfer to my son’s Special Needs Trust, and the Trustee will work with the property management company.

In my opinion, the advantage to this is the property will pay for itself after I’m gone. The Trustee will have the authority to increase rent, evict tenants, etc; and the property management company will ensure the property is well maintained. Living in the house prior to me passing will allow us to develop an understanding of what the household expenses are; which will allow me to flesh out a reasonable budget for the Trustee to follow.

If you have a child, or sibling, you’re caring for and you haven’t put any thought into where they will live after you’re gone please use this as a siren call to start planning. There is no one-size fits all solution, it really boils down to what the individual wants/is capable of and your financial situation. The longer you wait, the more difficult it will become – but it’s only too late if you pass away before you do something; because then it falls into the hands of the State. If you’re not sure what to do, reach out and ask.