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”.
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.