Wednesday, April 26, 2006

There’s No Place Like Home

I was sitting in Dear Son’s hospital room as he lie sleeping in bed. It was approximately 11:20 a.m. and I was just getting ready to go down to the restaurant, which was located on the second floor of the adult hospital, to get a salad, when I heard the little boy go by. The little boy appeared to be about eight years old, was black, with a cute face and big brown eyes. He was sitting fully dressed on one of the hospital beds and was being wheeled down the hall by two uniformed men. His plastic bag, with the children’s hospital name on it, was at the end of the bed and contained all of his belongings. “You need to call my Momma,” he said. “Please, just call my Momma and she will come and get me.” “Where are you taking me?” “I want to go home.” His eyes were filling with tears and he could sense something was terribly wrong, but his Momma would fix it if they would just call her. His cries became more urgent and quicker and the two men pulled the bed down the hallway even faster, so as not to disturb the other patients, or children as they were, in the hospital rooms. “Please, just call my Momma!" he cried, “She will come and get me.” The little boy pleaded and pleaded with the men but they refused to look at him and said nothing.

It was quite disturbing to witness and I couldn’t get him off of my mind. A minute later, one of the sitters came in to relieve me, so I could go down to get my lunch. She sat with Dear Son on many hospitalizations, as was required, for the 24 hour video EEG monitoring, when I needed to get something to eat or to run home to do a load of laundry. I asked her what she knew about the little boy that just went by.

She told me his mother had signed papers this morning and he was being taken to a group home of some kind. I don’t remember her exact words because I was so shocked by the situation. It appears that he was mildly disabled and his mother couldn’t care for him. Apparently, there were both physical and mental disabilities, neither of which were apparent to me, as they wheeled him by. He was definitely not going home today, or tomorrow, or ever. Then she said something, that I will never forget. She said, “his mother didn’t tell him”. As hard as I could, I could not forgive her for this. I would like to believe that he was going to a better place but somehow, when your mother doesn’t want you and she breaks your heart, I don’t think that any place will ever do, no matter how nice it is. And not telling him, well it just doesn’t get any worse than that. I knew deep down, that this boy would re-play this scene over and over again in his mind, for the rest of his life, wondering, what he could have possibly done wrong, for his Momma to give him away.

So it happened again yesterday, at the grocery store. I was shopping with Dear Son as I occasionally do, pushing his wheelchair with my left hand and pulling the shopping cart with my right hand. When I was checking out, the cashier, who has seen me before, asks me again, “What are you going to do with him when he gets older?” It’s a question that is asked often when I am out in public and more frequently when they view me lifting him in/our of the car and into the wheelchair. They notice that not only can’t he walk, but that he can’t help me at all.

I am never quite sure what the quick answer to the question should be. In fact, I am not even sure I know the answer to the question. The fact is, I don’t know how I will manage him as he gets bigger but I do want to care for him for the rest of his life. I also pray a lot at night. I pray for the mental strength to handle whatever comes my way and the physical strength to lift him. I pray for a lot of other things but those two are usually at the top of my list.

I also know that these are well meaning people that are more curious than critical. If I were speaking with them one on one, I would ask them if they could give up their child. Most people could not do that. But it’s ironic how often we ask mother’s or parents of disabled children, this very question. It’s ironic how often the first thing to come into people’s minds, is to give these children away, or put them somewhere, as if they are disposable. They are not disposable because they have handicaps. They are not disposable because their parents are poor. They should not be given up because it’s hard. But the reality is that it is very hard to care for them. And exhausting.

What we should do, is work on making things easier for disabled children and the people who care for them. This benefits everyone. Here’s what we can do:

• We need to have daycare facilities that take all children, regardless of their disabilities. While legally, they can not discriminate, they often won’t take them. They don’t make money on kids like that, even if they had employees trained to care for them. Daycare for disabled children, is practically non-existant. We need to do this so these parents can work and take good care of their children and themselves.
• We need more Respite care so when their parents are tired, they get a break.
• We need to require hospitals or medical centers that have specialty physicians who care for these children, have suitable rest rooms so we can change them on a bed instead of on the bathroom floors.
• We need to have assistants located in the parking lots of our medical centers, so they can help us lift the children in/out of the car, making it easier, instead of paying people to say hello to us when we come for an outpatient visit.
• We need to allow parents to save tax free in a 401(k) for their disabled children’s retirement, in addition to their own retirement, so the children/adults will be less dependent on Medicaid, Medicare and other government programs. We also need to provide for medical withdrawals, based on need, for these 401(k) plans, in case of catastrophic medical bills. We could do this very easily, by using our current Social Security definitions of a disability, as a requirement for the new 401(k).

There are lots of other things that we can do, but if we start with these, then maybe, just maybe, the kids can go home, and sleep in their own beds tonight.


Kelly said...

It has never ONCE occured to me to put my daughter in a home. I thought such things were "in the past", and a side effect of ignorance. However, I know of a couple that has done just that--put their handicapped daughter in a home. It's called a "school", but I don't care, it's an institution, and it's physical/emotional abandonment (not financial, mind you, but what child cares about that?).

Many people say to me: "Wow, I could never handle that like you do." And I understand what they're saying, but, did I have a choice? No. NOT taking care of her is NOT an option.

Out of all the things you mentioned, the respite care hits home the most. As much as I feel she's my responsibility, I am getting weary from her dependance on me. It's taxing emotionally and physically. I wanted to visit my parents out of state by myself for a little break, but who's going to watch Michaela? Who CAN? Hardly anyone, including her Dad (who works long hours). So I'm not going on my trip. Yet, I badly need it. Respite with someone who is qualified, loving, and trustworthy would be a blessing. But I have little to no resources.

If only one of your suggestions was implemented, things would be a whole lot easier for all of "us".

Becca said...

Dream Mom, you already have that mental strength, it shines through in all of your posts, and as for the physical... well, there is technology to assist you there, if and when you want it. Dear Son's living at home is not dependant on your or anyone else's being able to lift him.

I can pull up some more information about that kind of gear, if you want, but I expect you probably already know :)

Hope you are both well - it's a lovely sunny day here in Manchester.

Becca said...

Hi Dream Mom, me again I'm afraid.

I just wanted to draw your attention to Blogging Against Disablism Day and thought you may be interested to read, and/or participate. You seem to have fallen in very much with the medical/nursing side of blogging but as a mum (mom) of a disabled son we over on the disability blogging side of the world are also keeping a seat warm for you. :)

Wrkinprogress said...

As you know, my sister-in-law Mary is in a group home for mentally disabled people. My husband arranged for her to live there years ago. The reason for her placement was because his mother was unable to care for her. Had his mother been able, she would have stayed at home with her until their mom died. Then, of course, she would have had to go into the group home anyway.

Fortunately, Mary is very happy at her home. She's comfortable with the staff and other residents, though when there's a change of staff she calls us a lot more often. I've spoken with several of the staff members from time to time and they all seem exceptionally caring people, thankfully.

I, too, though cannot imagine "giving up" a child! How on earth can a person rationalize NOT TELLING their sweet little son what's going on? He could live in a group home and she could visit him! There are so many ways this could have been handled -- where was the child's social worker in all of this? Where's a Guardian Ad Litem????? Grrrrrrrrrrrrrrrrrrrrrr!!!! I hate hate HATE thinking of children being treated this way.

Dream Mom, have you ever thought of starting a non-profit foundation to address the needs you're passionate about? Maybe now is not the time, but perhaps you could consider this possibility? You have a healthcare/accounting background. I'd be willing to bet you could find a lot of grant money/philanthropy money available for this very thing if you had time to put into it (which I know you don't). But do think about it. I think you have the ability to bring about positive change in this world, and I have no doubt that many of your loyal readers, myself included, would be supportive of your efforts.

Just a little bug in your ear...

Much love,

Dream Mom said...

Thanks for all of your comments. Becca, I'll be sure to check it out. And yes, I am aware of the equipment out there (I have a Hoyer Lift in my dining room) but the Hoyer Lift is bulky and takes so long to use that I can lift him in a few seconds and I get a nice peak to my biceps to boot:)

WIP-I hadn't thought about that. My healthcare background is that of an Account Manager, as in Relationship Manager, not Accounting per se. My role was to establish, develop and maintain executive level partnerships with our (I worked for a healthcare software vendor)customers offering financial and administrative IT products and solutions, as well as increasing client satisfaction, generating revenue and reducing outstanding debt (DSO). My main contacts were the the CIO's or C level at major academic medical centers across the country.

Your point is well taken however. I have thought of different ways to solve some of these issues and at the correct time, will probably focus my efforts on one or two of them. I think having available and accessible daycare to all disabled children would have the biggest impact, if I had to chose just one. The reason that one is close to my heart, is that many care givers must live a life of poverty in order to care for their children which means they don't have access to medical insurance, retirement plans, adequate resources and/or products for their children (due to a lack of money). But we have to put the children first, and make certain we have good, available care, the same thing we offer to parents of normal children.

The difficulty is finding a suitable financial model that would support those efforts and one that would still be affordable to working parents. My best guess, is that we need to look beyond a traditional daycare type facility and develop a new model for daycare services as a subset of the healthcare community vs. the community at large.

kim said...

There is such a need for daycare and respite services....why hasn't anyone put together a business model for something like this.

Daycare that specializes in disabled kids. REAL daycare, with outings and stimulation. Respite caretakers who are trained to deal with tubes and feedings, etc. One day, one week.

I am doing the Blogging Against Disabilism, too, although on a scale of one-to-ten, you ladies who have to work so hard to care for your kids may find my topic to be a 0.01.

dki617 said...

What an image of that poor little boy.

You can say what you will about the lack of services or help for us parents, and God knows I agree with you! But I doubt that all of the help in the world would have changed this child's outcome.

Anyone who could discard a child that way - I just can't imagine.

Wrkinprogress said...

Dream Mom -- I did software training & support for VERSYSS -- ever heard of 'em? They're now part of Emdeon, aka WebMD.

And I bet ADAPT would have some info to help you -- and lots of places would probably be into giving grants for this sort of thing, like the Bill & Melinda Gates foundation, Steve Young's org, etc.

I'll be your personal assistant! :)

Dream Mom said...

Thanks for all of your comments. WIP, yes, I have heard of them! As for the foundation, that's a lot to take on right now, but when I am ready, you will be the first to know!

TC said...

Thanks for writing this. I want to take every little child like that boy and take them home with me. I have nothing but respect for parents like yourself who take care of disabled kids 24/7 without a break, lifting and washing and doing treatments and giving tube feedings and everything else. Once, I had a family who had triplets. 2 boys, who were healthy and a little girl who had a bleed after birth and was given a poor prognosis. They moved out of the area and left the girl in a long term care facility under guardianship. She was alert, tracked with her eyes, loved to be snuggled. With love and care from her parents who knows how she might have progressed. No matter how good the care at a children's home, it's no substitute for caring parents. Every parent who cares for their special needs child needs to know they make a huge difference in that child's life.

Anonymous said...

Parents do strange things sometimes...when I was eight, my mother was diagnosed w/ lymphoma and a rare fast-moving lung cancer. She told my father not to tell us kids. He didn't. So, when she was dead ten days later, it was so shocking, that I have vowed NEVER to keep anything even slightly major from my children. I love my mother, but I think not facing up to your kid and telling them what's going on is a total cop-out chicken-poop thing to do to a kid. That poor little boy...I can only imagine how frightened he was.

mary said...

What a heart-wrenching story. Unfortunately, in some states (such as my own Virginia) there are still more institutional beds available than there are dollars for Medicaid waivers to help support people in their own homes. Sadly, this includes children. People think children do not get admitted to "homes" anymore. Not true.

Your other ideas are great ones! I wanted to make sure you knew about "supplemental" or "special needs" trusts set up for people with significant disabilities who will probably not earn enough money to provide for themselves, and will need to rely on Medicaid and other government programs. See one explanation at the Arc's site:

One of the compelling problems we have devised for ourselves as a society is this problem of Medicaid and poverty, ie: in most states, you are entitled to Medicaid only if you are absolutely poor. This presents a problem for people who must have medical insurance and coverage for things that are not ordinarily covered by insurance (such as personal care attendents and respite for caregivers, etc). They have to remain impoverished in order to qualify. It would be far more sensible for all of society, taxpayers included, if we could allow families to "buy into" Medicaid; purchase the benefits just like you purchase private insurance. And then allow families to truly save money for their child without worrying about the God-Almighty Medicaid cut off point.

Whew. I feel a post coming on.

Wonderful thoughts, as usual, Dream Mom.


Anonymous said...

Thanks. I've spent more hours in Children's hospitals than I care to think about.

I've seen several kids who spent days/weeks in hospitals without their parents ever visiting. I know that there are situations where that can't be helped, it's just that I would have done anything to be with my child through every minute of her stay in the hospital, I was always able to, I don't know what I would have done if I couldn't have. I would have gone insane.

I can't imagine giving up a child. My child is seriously disabled and I consider it a privilege to be her mom. She's a great person. Asking "what are you going to do with that child later on" is pathetic. I've been asked it too. My child is 23 and lives with me. So what? I've given up a huge chunk of my life to take care of her. So what? That's life.

I hope that little boy went to some people who think he's fabulous, or that his mom changed her mind and rushed to get him the next day...

That Girl said...

I dont think it's right to judge ANY parent on their parenting based on a single glimpse into their lives.
What if her side of the story is that she is about to undergo chemo for breast cancer and cant take care of a disabled child while doing so? And she doesnt want him to count on her surviving or even coming to see him?
My brother had to be put into an institution and even as an adult (and the mother of a disabled child) I blame my mom most for not putting him there sooner.
Unless you need to feel superior, it would be a lot better to concentrate on how we can help moms care for their children.
Id like to point out that we wouldnt condemn anyone for "giving up" after 8 years of anything else.
In any event, Im a professional fundraiser for non-profits and dream mom - if you decide to start any kind of program Id be happy to help with that aspect of it.

Norma said...

This is such a touching story; I have linked to it. About the respite and day care--I too wondered about someone with the experience in healthcare starting something. Dream Mom looks like the Dream Candidate to me.

However, if you click over to the Heinzerling Foundation here in Columbus, OH, you may see a large organization with a lovely webpage. I've lived here about 40 years, and knew the son of the couple who started this with just a few children in their own home, called Peck 'o Wee Ones. They had no disabled children, but were looking for a service opportunity in their retirement and decided profoundly retarded babies filled that. I don't know all the details--I suppose the history is on the web site. But children who formerly would have lived a very short time, lived longer, and then some to adulthood, so the facility kept expanding not only its mission but its age line.

Whatever is started would be small and less than perfect, but as our mothers told us, big oaks from little acorns grow.

Also, I think sending a disabled child to a boarding facility so he/she can have a social life and sports and friends and life skills training is perfectly appropriate. One young man I know went from that school (he was a teen-ager) to a group home which he loves. The initial separation was very hard on his parents, but he just thrived. He is now 30, comes home for visits, but is always anxious to return to his "home."

km said...

Hi everyone. I am new to blogdom and just came across this site. My brother in law is severely disabled and lives in a group home here in Utah. I do believe that most parents do what they think is best for their children, and agree with one blogger who wisely asked us all to avoid judgement.

The reason for my post is that our family feels the care my bro in law is receiving at his current group home is not what it could be. There are no other good options here in Utah, however, so I am dreaming big.

Is anyone aware of a private group home that can make it without governmental help? We have been told that no more ICFMRs can be started in Utah, but I don't know if that would include a completely privately funded home.

I am inspired by the daycare idea, too. I am a Nurse Practitioner and my husband is a CPA with his MBA. Can't help but wonder if we are supposed to use our skills in the area of care for those with disabilities.....

Any info y'all have on the above, specifically in Utah, is welcome!


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