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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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.

VET TIX

VET TIX provides tickets to events which reduce stress, strengthen family bonds, build life-long memories and encourage service members and veterans to stay engaged with local communities and American life. We support our troops by honoring their service and providing positive family and life experiences, during and after their years of service to our country (Retrieved from https://www.vettix.org/index.php). As a veteran I’m honored an organization has taken this unique approach to help Active Duty military and veterans; and I want to help them get their message out.

Who They Are 

VET TIX has (2) programs I’m aware of, Tickets for Troops and Hero’s Wish.

Tickets for Troops uses partnerships with major sports teams, organizations and event ticket holders to give active duty military and honorably discharged veterans free and discounted tickets. Military personnel, especially junior enlisted, do not make very much money – this is an amazing opportunity for our service members.

Hero’s Wish aims to ease the burden on families who have lost a loved one (KIA), been injured (WIA) or is currently deployed; by providing a once in a lifetime expense at an event. Their services are available to active duty personnel in a 6 month before/after deployment, severely wounded, or families of those killed in action. They provide a list of current hero’s wishes here.

What They Do 

VET TIX’s website has a link for veterans to create an account – where you will identify the type (active duty, retired, etc). From there they will verify the information, because they want to ensure veterans, and their families, are the ones being served. The applicants will let VET TIX know what event they would like to attend, and from there VET TIX works to secure tickets. The attendees will pay a small fee, much less than the full cost if they were to buy it themselves, to receive their tickets.

What Else Should I Know

 

Two of the three founders served in the military, and the third’s father had served – so all three are familiar with the sacrifices service members and their families experience. Their Core Values of Patriotism, Support & Recognition, Quality of Life and Family really resonated with me – and as I learned more about VET TIX it became clearer and clearer that they are the “real deal”.

Disclaimer

I am not an employee of Vet TIX 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.

Manna Food Center

Manna Food Center is a food bank headquartered in Gaithersburg, Maryland focused on eliminating hunger in Montgomery County, Maryland. It’s a little more localized than the non-profits I usually spotlight; but with something like eliminating hunger I believe it’s more effective to focus locally and spread.

Who They Are 

Manna Food Center is a food bank – they provide food to approximately 40k people each year; in addition to supplying soup kitchens, food pantries and shelters throughout the County. As a food pantry they’ve established distribution sites to enable those who need the help to readily access it. Before meeting with them I had no idea what the difference was between a food bank and food pantry – a food bank stores the food and products; the pantry is what actually distributes the food. A food bank could (and Manna does) supply multiple food pantries.

I was shocked to learn 1/3 of students attending public schools receive free or discounted lunches – because of how wealthy I’ve perceived Montgomery County to be. To be clear – Montgomery County is wealthy, but they also have a large population of seniors and those with disabilities who may struggle given the high cost of living and additional healthcare expenses.

What They Do 

Manna Food Center serves over 3,700 families each month! Rather than list out their strategic plan in detail, I invite (and encourage) you to read about it here. In brief, they have (3) priorities (from their website):

(1) Participant-centered & data driven program delivery

(2) Community Leadership & Advocacy

(3) A values-based business model that supports the people who make our work possible.

What Else Should I Know

They’ve repurposed an old school bus into a mobile kitchen and pop-up pantry; bringing nutritious foods AND providing the opportunity for those living in the communities reached to learn how to prepare them.

Manna doesn’t just provide a handout. They do their best to help those they serve understand the importance of making healthy lifestyle choices, provide them with the opportunity to do so and in many cases bridge the gap when families hit a rough spot; something I think all of us can relate to – even though maybe not to the extent we didn’t know where our next meal(s) were coming from.

Disclaimer

I am not an employee of Manna Food Center 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.

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.

Pathfinders for Autism

Pathfinders for Autism was founded in February 2000 by parents of children with Autism, creating a Resource Center shortly after. In the years since Pathfinders was founded it has grown to be Maryland’s largest Autism organization (to the best of my knowledge). Their most recent effort towards raising awareness has been with the staffo of emergency rooms throughout the state, helping nurses and doctors understand the additional complications which may be present when an individual with Autism arrives – for example non-verbal or seeming lack of comprehension to questions asked.

Who They Are 

Pathfinders’ Mission statement is short and to the point (from their website) – “to improve the lives of individuals with autism and the people who care for them. We accomplish this through a variety of programs and services, all of which are offered free of charge.” Personally, I continue to refer clients and other professionals to their website because of the immense amount of information to be found there. I’ve also been fortunate enough to participate in a few of their programs, and I was blown away by how well they were run.

What They Do 

Pathfinders does so much, it’s difficult to capture it in a format like this – so I am going to highlight a few of the things which impress me the most and encourage you to check out their website. I want to stress – many of the resources and information provided isn’t just for Autism, it can be applied equally well to just about any disability.

The Pathfinders for Autism Resource Center is how they originally started, and remains a significant part of their daily activities. Pathfinders’ staff will respond personally to all inquiries made – whether through Facebook, e-mail or phone; and they distribute monthly “Parent Tips” covering a wide variety of topics.

They sponsor workshops around the state – bringing in experts on topics like vocational rehab, financial planning and dietary interventions, to name a few. Annually they are a sponsor of Honestly Autism Day, combining a resource fair with well-known Key Note speakers and break-out sessions.

As mentioned above, they train First Responders – this includes Law Enforcement, Fire Fighters, Emergency Medical Services (EMS) and, most recently, Emergency Rooms. These trainings are more than powerpoint presentations, Pathfinders will bring self-advocate volunteers and provide scenario-based instruction – which in my opinion is really the only way to help people truly understand what they could be faced with.

What Else Should I Know

As I stated, Pathfinders for Autism does so much more than I can fit into this medium. Personally I’ve used their “Autism by Age” tab on their website to help me figure out what to do after my wife passed away, and I continue to refer to it even today. Their Resources and Help tab offers information for residents and non-residents alike, as well as a search tool for providers and services (and much, much more).

Pathfinders for Autism is an authorized 501(c)3, you can find their 990 and other financial information on their website. They sponsor a Run Wild for Autism 5k Race and 1 Mile Fun Run & Walk at the Baltimore Zoo, or you can donate online. In my opinion, they have proven themselves to be extremely good stewards of the funds received, and are a most deserving organization.

Disclaimer

I am not an employee of Pathfinders for Autism 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.

Madison House Autism Foundation

Madison House Autism Foundation (“Madison House”) was founded to help families give their sons and daughters with Autism opportunities to live independently, or as independently as possible, upon transitioning from High School. They recognize the lack of services currently available to individuals with Autism after the supports provided during the school years have been removed; and are working with communities to create natural support networks. To name just a few of the ways they are doing this: through supporting/promoting public policy, training first responders and partnering with other, like-minded organizations.

Who They Are 

 

Madison House Autism Foundation was founded in 2007 by JaLynn and Gregory Prince, and named for their son Madison. Rather than try to tell their story for them, follow this link: How We Began

What They Do 

Where to begin?! they offer a host of resources on their website – including links for housing, medical and jobs (and much, much more)! Their housing programs include Madison Fields; envisioned as an “agrihood” found on a 400-acre farm complete with a barn and fields for hippotherapy (therapeutic horse-back riding).

The Medical tab takes you to another page, with a video interview of a physician (Faith Frankel, MD) and links to yet even more resources. If you’re still not convinced you need to at least learn more about Madison Fields, consider how few resources there are for parents like you and me, who either have or will have, adult children on the Autism Spectrum. Autism is not a disease, and there are no factors affecting mortality – so our children can fully expect to live a long life – how full and enriching of a life is in a large part up to us as parents.

 

What Else Should I Know

I love how much information Madison House was able, and willing, to aggregate and share. There are no requirements to become a “member”, everything is open-sourced with links addressing the questions I often find myself dwelling on, and I’m sure I’m not the only parent doing so. Questions like “What are my adult child’s employment options?” and “How will we pay for our adult child’s everyday living and service needs?

Disclaimer

I am not an employee of Madison House Autism Foundation 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). I’m doing my best to continue posting about one organization a month, using information and notes I took when I met with them – as well as additional research I completed online. The featured image is a picture I took while visiting Madison Fields. All opinions and views are my own.