Commitment, Disability Awareness & Advocacy, Life, Uncategorized

Adversity, Growing Pains & the Hope of a New Life

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, it’s difficult to keep up with!

Along with that change, I’ve learned that the various “systems” that support them (and myself as a parent), are seriously and fundamentally lacking.

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 his life, since birth. 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 better, especially for those parents who have a child who is more severely or multiply-involved).

I’ve become overwhelmed lately in trying to figure out how best to prioritize and handle life on Max’s behalf – so 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 re-charge and have quiet time to think this all through. 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 get supports and services; to make what I consider to be necessary changes. Some people listen sympathetically. That’s good, right?

Well why do I have to keep telling the same story over and over? My God, it’s like Max 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.

Well, that’s not going to happen where Max lives now. It sucks – unnecessarily so and it pisses me off. It doesn’t have to be that way and sometimes, I’m not nice. Too bad. Max is human and so am I. So…

Some good news in all of this, is that Max now has a remarkable, magical communication device based on eye-glance (Dynavox Tobii), 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. This may be his ticket out of his current, sad living environment.

I can guarantee he NEVER would have gotten this device if I wasn’t the one that went after it. They would have still been just “looking at him looking” (no, I’m not kidding) and reaching for food or a drink, etc. But wait! I’m looking at them looking at Max. I see everything.

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 to do so.

I have to fight for everything where Max lives now. Literally everything. He is living in a group home where no one responsible to support him, understands his emotional needs – those related to Self-Determination or community inclusion.

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 opportunity or activities that put Max in touch with any non-disabled people in his age group. Slap my forehead.

They can’t comprehend his physical and medical needs, either current or in the future (there is no anticipation) of anything. They appear to not care at all. I don’t know if it’s out of ignorance or laziness or greed, because 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 who could and should be making a difference, some aren’t listening at all or others have it down to nodding their heads sympathetically, while doing nothing.

Time, as we all know it, is running out for Max. He’s now existing in a very lonely, stagnant world. It’s bleak. It’s wrong. 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 very rural community, 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), while someone yelled they had to go to the bathroom – 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 your toe nails clipped and then running through the McDonald’s drive-thru.

There are some parents who understand exactly what I’m talking about and we’re “one” in that regard and not alone. We’re an unfortunate and sad “tribe”.

I understood, early on when Max 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 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 giving a fuck because everyone else stopped giving a fuck”. I refuse to buy into that bullshit. 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. When someone tries to make ME feel BAD for standing up for myself and my kid; for pointing out systemic breakdowns that hurt my kid, I take offense.

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.

Cry me a river over the “too busy” bullshit. So suck it up buttercup. I’m not going away. I owe Max much better than that. I’m better than that. And they should be too.

This attitude has given me pause recently to re-think my position as Max’s 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 Max’s time in approaching? Am I wasting my time? Are there particular grass-root movements where Max 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. 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, incompetent social workers (who have absolutely no fucking 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? Btw, 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 Max (and others) in the dark and unsupported? Wow. Just wow. SMH.

Let’s do better…. as human beings. Be mindful. The sky’s the limit.

Standard
Disability Awareness & Advocacy, Uncategorized

A Child is Born – Part One

It’s been many years of constant love and trying to do the right thing; always struggling with the powers that be … and thinking that others who were supposed to be in place to help, were also on that same page. Sometimes (okay rarely) I was right – but more times, very wrong

The unfortunate truth, in being the parent or guardian or advocate for a child/adult (or for an individual with a disability), is that this has always been basically a flip of the coin. My real-life experiences have been long and many.

I have learned that laws, regulations, policies and guidelines sometimes mean something and sometimes mean nothing at all. It all depends on the commitment of others. It depends on who the doctor or specialist is and “their staff”. Sometimes their staff drop the ball, are rude don’t follow through or just don’t get it – and it doesn’t matter because they get paid anyway.

It depends on the special education system, whether teachers, therapists (Physical, Occupational Therapists and Speech Language Pathologists). And then there is the supervisors and administrators. You can have the best teachers and school therapists and if administration doesn’t support them to support your child, well…. much is lost if not entirely.

And we have next those at the county-level, namely community mental health, under the state auspices of control (control of funding and budgets), who are mostly social workers with a bachelor’s degree who come out of college not knowing anything on a moral or practical level. Forget any need to hone your craft or go beyond what they “learned in college”. I term them as “the gatekeepers”, who say “no” on a regular basis… because they choose to remain disengaged, ignorant or lazy.

They’re more involved in appeasing “the state” when it comes to how the money is spent…. or not spent.

I think that when these young and inexperienced social workers, when they start to work on behalf of others “less fortunate”, are too often taught (assimilated into a kind of “collective”) that it’s all about the money … as in don’t spend the money. So no wonder that there is a desensitization-process and a disconnection between what they should do and could do on behalf of people with disabilities – and then it’s a given, that those who are hurt the most are the most-vulnerable. That minority are those who are severely-multiply disabled.

I’ve heard just about every reason for “no”. They like to say they have a “lack of resources”; “We don’t have resources for that….”. We don’t have to “provide that support or service” because it’s “not written in a policy manual”. Or they outright ignore repeated attempts by parents, guardians, individuals to change the system, who are trying their best to get it to work for their person.

Why yes, “they” (those who are disabled) are PEOPLE. People are human beings. (I felt the need to clarify that one!)

First there were the medical issues and meeting those needs in keeping Max alive. He was a preemie, like many, many other babies before and after him. He was tiny and precious and okay, oh-so-cute – and my child with a precarious and unknown future.

I was actually afraid to love him in the beginning! I had been told by a neonatologist that an infant born as early as Max, was certainly at the highest risk of developing some huge problem with some major organ or system in his tiny body. Isn’t that the saddest thing ever? Being afraid to love your child? To become attached? Awful!

What to do? What should I know? I had never had a child with severe, multiple disabilities as his. I decided I would be brave and I knew that I loved him no matter what, and I knew that I would do whatever I had to, to protect him – against all odds. It’s been that way ever since.

This little guy came home on an apnea monitor, medication around-the-clock to keep his heart rate up. He was on oxygen. Very scary times. Absolute anxiety and this desperate feeling churned inside of me. What was this awful emotion? It was stress rolled up into a ball of fight or flight. I remember bathing him for the first time in the NICU, knowing as family members watched, that I had to look confident so that they wouldn’t be scared. I had to be brave for Max’s sake.

He couldn’t come home until everyone in the family learned how to do infant CPR. And then there was the throwing up and every little ounce of formula that he’d drink was mostly coming back up. It was a huge struggle….

His life, his quality of life, has always been a struggle and very frustrating when people have not cared to do their jobs. I mean, why go into jobs (or fields related to the human condition) that require you to be resourceful, kind, patient, persistent and strong? These types of jobs aren’t careers, also in my opinion, but should be termed as a “calling”.

So I jump forward, many years into the future and he’s grown up into a handsome young man with a brilliant smile; with eyes that (must) express his both funny and serious soul. And what is life like now?

END OF PART ONE

Standard
Disability Awareness & Advocacy, guardianship, Uncategorized

Her name is Emily

Disclaimer: Some of the exact dates are in question at this time, so these are approximate. This article was not totally ready for publication, but has become necessary at this time, and is life and death – in getting the word out there – For Emily’s Sake and very life! And so it is necessary. As this travesty has now become public, and with her mother’s permission, I am proceeding to do so.

On September 17, 2019, Emily Delph, age 25 years (adopted from Haiti as an infant), weighing 75 pounds as the small person she is, and severely, multiply-disabled, was taken from her mother, Holly Delph, by a Michigan state-appointed temporary guardian and left abandoned at St. Mary’s Hospital emergency room.

When the temporary guardian, Karen Vansweden, and the officer arrived at Holly and Emily’s home, this court-appointed, temporary guardian told Holly “not to try to see Emily”. There was no neglect. There was no abuse. There were no charges and there was no paperwork handed over to Holly.

A court date has been set to go back to Probate Court on October 24, 2019…. if Emily makes it until then or there isn’t irreversible damage caused by waiting that long. It’s possible that Emily might never fully recover from this assault on her person by this rogue court and paid guardian. What were they thinking?!

Holly has never neglected or abused her daughter. In fact, every life decision that’s she’s made since Emily became her daughter, has been on Emily’s behalf and in her best interest. Holly loves Emily.

Upon admittance to St. Mary’s Hospital in Grand Rapids, Emily’s health was reported as excellent. The hospital staff called her mom who was listed as the emergency contact and asked what to do with her!

Where was the temporary guardian?

Anyone with any knowledge of Emily would know that she couldn’t be just dropped off at an emergency room and abandoned. That’s neglect of a very vulnerable person and it greatly endangered Emily’s health and life. Sadly, her mother was powerless to stop it or step in at that time because of the temporary guardianship. Kent County Probate Court in Michigan and the judge that appointed this temporary guardian, should be held accountable for the probable tragedy that’s playing out right now.

Emily is not only severely, multiply-disabled, she has complex needs and is medically-fragile. Her primary diagnosis is cerebral palsy. She is nonverbal and total care for all of her basic and personal needs.

“I was told by Karen Vansweden not to go. I was called by St Mary’s Hospital. The Physician’s Assistant called me and said she was in great shape. They wanted to know how to feed her. The guardian just dumped her. I have no idea if I’m allowed. Emi has never been in a hospital ever for an illness. Only orthopedic stuff. I was always there. My somewhat slow attorney my son is talking to is trying to get real answers. Again no neglect or abuse. It’s a Michigan guardianship thing So flu season is here. Emily is healthy in a hospital costing the tax payers lots of money. If she gets sick, its state-sanctioned euthanasia. Again the guardian dumped her.”

Of course, now this temporary guardian will get a bigger paycheck this month because Emily was dumped at the emergency room and admitted to this hospital unnecessarily. I guess that this guardian gets paid to dump off disabled people whenever and wherever and with no accountability or oversight.

On 09/18/2019, Holly was advised through her attorney, that Emily would be discharged to a nursing home that day or the next until the temporary guardian could find “another facility”. It was unclear whether the guardian or the hospital had made that decision. It was then that Holly was advised that she could see Emily “at the new facility” (wherever that was going to be).

By 09/21/2019, Emily still remained at the hospital and at that time, Holly was able to visit in the evenings. There was a struggle with her food as Emily has a very sensitive stomach and the guardian wouldn’t approve what she had been eating when she was at home with her mother who cared for her. There is a particular kind of formula that provides nutrition for Emily. Her mother was not allowed to intercede and care for her as she had at home.

By 09/22/2019, Emily’s condition started to degrade. She became impacted, getting sores, her calories were cut and she received no therapy, as she was previously receiving before she was taken. Her brand new specialty leg brace ($3500) and shoes came up missing, and although her mother brought in her chair (for positioning and mobility), she was not allowed to sit in it. It gets worse from there….

On 09/26/2019, Emily was taken to Metron of Lamont (nursing home) basically to languish and die from starvation, pneumonia, bedsores, being impacted, infections. And then…

 

On 09/29/2019, Emily was re-admitted to St. Mary’s Hospital.

“I went to visit because I was told I could work with her. Emily is in bad shape. My intentions were to get her in her chair I brought. Give her a real shower. The charge nurse didn’t understand the food I brought was the same food brand they were already giving that was from me earlier in the week. She would not disconnect the IV for a short time, so I could put her in a chair. They were dumb. All of Emily’s night lights were gone. Again her $3500 orthotic was not there. The state-paid guardian refuses a care conference. Emily cried when I left but I couldn’t stay because my distress of the stupidity of it all was overwhelming. They are euthanizing Emily. “

As of several days ago, Emily is now at a place called the The Laurels of Kent. This is the website url. Their rating is poor. https://www.google.com/search?q=Laurel+of+Kent+reviews&ie=&oe= Read all the reviews.

#bringemilyhome #newsworthy #wwmt #wood #wzzm #wxmi #rockfordmichigan #ncaa #ada #sharethis #isthisreallyaboutmoney?

And finally but not least of all, here is a personal appeal from Emily’s Mother, Holly Delph, on her daughter’s behalf. Please share this post/video, so that Emily can come home and be with the family that loves her.

Standard