Adversity, Growing Pains & the Hope of a ...

Adversity, Growing Pains & the Hope of a New Life

Sep 27, 2020

When your adult child with a disability “grows up”…. meaning they are no longer a minor child, life changes. Sometimes in a big way. Time marches on. Their needs change — in so many ways, and it’s difficult to keep up!

Along with that change, I’ve learned that the various “systems” that support my son (and myself as a parent), are seriously and fundamentally lacking. Or maybe I should re-word that. Maybe a better word is “unavailable or inaccessible, unattainable” (not for the lack of trying). There’s no one-stop shopping here folks.

Let’s talk about the elephant in the room.

We as parents are getting older and we wonder, what’s going to happen to our children when we’re no longer around to either take care of them or advocate on their behalf? What will their lives be like, we wonder. Will they be deprived, neglected or abused? Will they be safe, healthy, happy and engaged and included within their community?

These questions and thoughts keep me up at night — and truthfully have been with me every waking moment of my son’s life, since birth. He’s now 27. I know that I’m not alone, as a parent. Hello. Nice to meet you!

Suddenly life evolves, transcends or parts of that former life that existed in supports and services, simply deteriorate or disappear altogether in many areas — educational, social, mental, the physical, medical, financial, etc., (and not for the best, especially for those parents who have a child who is more severely or multiply-involved).

I’ve had way too many moments of internal turmoil and anxiety, when I’ve become overwhelmed in trying to figure out how best to prioritize and handle life on my son’s behalf — so that it’s entirely about HIS life the way HE wants it. It’s quite frankly, daunting. My brain literally wants to walk away and turn off — just for a little bit. Just long enough to recharge and have quiet time to think this all through. Clarity is sometimes in short-supply.

Time is the problem here. I’m so tired of repeating the same stories (his life story and various issues) over and over again to different people in different places, to try to get supports and services; to make what I consider to be necessary changes. Some people listen sympathetically and then I get no where. Why do I have to keep telling the same story over and over with little or no results? My God, it’s like my son and I live in an endless loop.

If I never had to talk to another person about his life (to get services/supports), and others did what they’re suppose to do, he would have a more meaningful, engaging and all-around better life, and hell, I’d have a life too. Peace might reign.

Some good news in all of this, is that my son now has a remarkable, magical communication device based on eye-glance (Dynavox Tobii (hps://www.tobiidynavox.com/en-US/products/i-series/), and it’s being set up and programmed for him. It will be a life-journey, but I’m very happy for him to begin that. It’s hopeful that one day, he will be able to have his own voice in which he can speak his preferences, wants, needs, desires and dreams.

(I wrote this article back in January 2020, I believe for another blog.)

UPDATE!

OH WAIT! COVID-19 ARRIVED! WE’RE IN THE MIDDLE OF A PANDEMIC.

LIFE AS HE KNEW IT STOPPED.

There wasn’t time to finish setting the device up and no one who knows how to, can come into the home to finish programming it and setting it up. Sad

However, I can guarantee he NEVER would have gotten this device if I wasn’t the one that went after it. The group home and his “support coordinator” would have still been just “looking at him looking”, while his choice of food or drink was to “reach” to choose. I can’t stand there and look at them looking at my son. I see everything. Yes, I see the possibilities.

I imagine (too much and agonize over the fact) that there are many nonverbal people (with complex communication needs) out there who could communicate quite clearly what they want if they were given the opportunity, devices, training and patience (from others) to do so.

I have to push (fight) for everything where he lives now. Literally everything. He is living in a group home where no one responsible to support him, really understands Self-Determination or community inclusion. So many lost opportunities.

https://www.michigan.gov/documents/mdhhs/Self_Determination_Policy_and_Practice_Guideline_4-7-1_638423_7.pdf

At his group home and local CMH, they continue to believe that ANYONE who is disabled, especially developmentally-disabled (no matter their age) is a “peer”, even if they’re old enough to be an aunt, uncle or grandparent. And there is absolutely NO opportunities (natural or created) or activities that put him in touch with any non-disabled people in his age group. The argument could be made that he lives in a rural county — but that’s never satisfied me (did you think it would?).

Do I think that he’s the only person in the life situation that he is? No.

They just don’t get his long-term physical and medical needs, either current or in the future (there is no anticipation of anything). I don’t know if it’s out of ignorance or if it’s intentional for whatever reasons. I have tried to educate them time and time again.

I constantly feel like I’m spinning my wheels, and while I’m talking to these people (local and state organizations, agencies, departments who “serve” the disabled) who could and should be making a difference, some aren’t listening. Others have it down to lip service and/or nodding their heads sympathetically, while doing nothing.

Time, as we all know it, is running out for my son.

He’s now existing in an even lonelier world with further separation brought on by COVID-19 and limitations of Freedom of Movement.

No one else locally or at the state or federal level is checking in. No one has reached out to me, ever. I have to do the reaching out and the follow up — consistently. So am I wrong to feel at least a little bit upset by this betrayal of his very being? I think not.

He’s not in school anymore. He aged out at 26. In school they had lots of activities, including going out into the community. They’d take bottles back to the store for return, and go shopping for supplies for art projects. They’d volunteer and go to the Humane Society. They’d go out to eat at a restaurant. They’d work in their garden in the Spring/Summer. They worked on academics and were given opportunities all the time to communicate in many different ways. He’d be stretched out (given range of motion), and his leg braces would be put on according to the schedule that was set by the physical therapists. He’d be up in his sit-to-stand device — which would help to improve his digestion, circulation and bone density/strength. He’d be up standing tall. He had a teacher and staff who worked with him diligently, and cared about engaging him and working with him on fine-motor activities and communication. They’d notify me when his equipment had issues or something wasn’t going on right with him. If he was ill or if there was even a scratch. He doesn’t have that anymore.

He doesn’t have the friends that he had at school either. Poof. Gone. I’m not going to say that school was perfect. It wasn’t and I would even say that there was a certain amount of “seclusion” within the community at-large — but in a rural community (farm land, farm land, farm land), this was most certainly better than sitting in front of a tv while laying in bed watching Paddington Bear for the 10th time (or staring out the window) — with the only hope of getting out during the week being those trips in the accessible van to the dentist or the doctor’s — or to the podiatrist to get toe nails clipped and then running through the McDonald’s drive-thru.

There are some parents who understand exactly what I’m talking about. We’re unfortunate, sad members of an exclusive club that shouldn’t exist.

I understood, early on when my son was very young, about people who get “jobs” in the “social service” fields; those who do advocacy work. They go out and give presentations or do work shops, and help to represent children and adults with disabilities and their families. They advise. Sometimes they themselves have children with a disability or disabilities — or maybe other family members. I learned that this can have its pros and cons. As I’ve reached the age that I have, I’ve seen some “forget” what started them on that path. They become de-sensitized (I’m sure they’d argue against that — but eh, I’ve a right to my opinion).

Come on, let’s be honest. It happens. It’s called burn-out or “I stopped caring because no one’s really watching”. It might be, “I’m just gonna slide by until retirement”. It might be, “Well we don’t do that; that’s not our function or mission”. I think most times, it comes down to location-location-location and the bigger, proactive organizations are in the bigger cities; those with a more lucrative tax base — and my son is simply out of their “jurisdiction”. I am cringing as I write that. I’ve lived on this Earth too long maybe.

Don’t get me started on the lack-of-funding crap either. There ARE answers out there, if people are creative and innovative enough. So instead of supporting and defending parents and families and individuals with disabilities, they take issue (offense) with any criticisms I have of the systems within which they work or about their associates? That says a lot and it’s not good. I’m not the enemy and my son has value. I make no apologies for advocating on his behalf… or for my persistence. I was created to ask the the unasked and uncomfortable questions.

When someone tries to make ME feel BAD for standing up for myself and my son; for pointing out systemic breakdowns that hurt my kid, I am the one that is offended!

I’m hearing lately that everyone is “too busy”. Sorry. No, not sorry. I care that those in a position (and who receive a salary) think it’s “okay” to use that excuse. That attitude directly affects my son’s quality of life and I’ll say it, his very LIFE.

I’m not going away. My son deserves better. I’m better than that. And they should be too.

This attitude (not mine — theirs) has given me pause recently to re-think my position as his parent, guardian and advocate, and how effective or ineffective I’ve been these past few years.

And to think about EXACTLY what are the roadblocks in his life in getting him what he needs. Do I need to change my “direction”? Do I need to re-assess which people or nonprofits, organizations, agencies, departments — either state or federal are worth my time or his (valuable) time in approaching? Am I wasting my time?

I may sound cynical and negative — but something that I have that lifts me back up is the belief that there are still good people in the world who care.

Are there particular grass-root movements where he would be better-served when it comes to my time and energy?

Obviously, changes need to happen. I believe that socially-aware and involved people need to get together and have brainstorming sessions.

We need to come together in making those changes. Everyone involved in the area of ALL the disabled.

Too often, the most severely, multiply-disabled are left out of some very important discussions. Why? That should be obvious. Neither they nor their parents or family can “make it” to the many meetings that happen at a distance from their homes, as they struggle to take care of their child or family member. They’re too busy just trying to survive.

Here’s one. How about instead of the Michigan Department of Health and Human Services/CMH’s hiring more fresh-out-of-college, inexperienced, social workers (who have absolutely no idea of what’s suppose to be going on), they hire some activity directors to make those very much needed community connections (concentration on inclusion), into oh-my-god, meaningful and fun DAILY interactions? There. See? Was that so hard?

Start thinking outside the box people. How about THROUGH the State of Michigan, MDHHS, the CMH’s, Intermediate School Systems, and other advocacy organizations, together, figure a way to REACH out to EVERY person with a disability and their family members — to make sure that THEY’RE meeting EVERYONE’S needs; to LISTEN; to really hear ideas, suggestions, comments?

By the way, not everyone has or can afford to be connected via the internet or has a computer. Think that they can get to a library? Think again.

Thinking about HIPA and Privacy issues? I’ll sign a release of information for them to contact me if that’s what it takes — you know, because privacy issues should continue to keep myself and my son (and others) in the dark and unsupported???

Think about it

P.S. Let’s get a lap top with internet/Wifi access in EVERY home — so that individuals and families can continue to have face time/live chats with their friends and families — while separated physically during this pandemic.

Love Wins.

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