The dog ate my homework
I have all sorts of reasons and excuses for not posting lately, but as I tell people all the time, never give a reason for something. So I ain’t telling you why. Okay, hints. Several things are going on with Pearlsky that I am having trouble getting my head around and they are easier to ignore. Also, life in general has gotten in the way. I believe I am back on track now. A sincere thank you to those who have been writing or commenting to see if I am okay. Yeah, I am. As okay as okay gets.
I did have a three day vacation of sorts, the first one in many years. I even got kissed! Yes, and I have proof! (go ahead, look, no joke). I think I’m in love … and she wants to have my baby!
And now for something completely different …
I have some questions about putting a kid like ours into a residential facility.
- Is it right?
- Does it short change the kid?
- If after she is in a residence, what if I sit home doing nothing? Is that right? Or what if I then have the time to bring about world peace and proceed to? Does that make it right?
- Is it not true that it does not matter what I do with the time it would give me, that should not be a determinant as to whether or not a residence is right for the kid?
- Would Pearlsky or a child like Chris even know the difference? Does that matter?
- To what degree does the parent give up on all hopes and dreams that, let’s face it, are not possible because of having a child like this at home?
- How do you balance said needs, hopes and dreams against the complete unknown of the child’s quality of life, needs, wants, desires?
- If your kid looks happy at the facility, is that good enough to justify your “abandoning” him or her to said care? Or have you saved your kid and yourself?
- Could a residence ever be as good as a home? That’s easy, yes. There are some real pukes as parents out there. But what about “us”? But this gets back to priorities. As in whose?
- What if there are “normal” siblings? I have nothing here, no clue what a normal kid is …
No, not considering putting Pearlsky in a residence. David, my son is in one, and his birthday is next week, and the intense pain of visiting him is coming to me just thinking about it. These questions come out of a recent conversation. They haunt me.
Oh, and I have given up on AFO‘s and braces, and other stuff like that. But that’s a post I am avoiding. And I am avoiding telling you about the Freedom of Information Act thingy I just submitted to the Department of Public Health.
I think I need to go back for another kiss.
Welcome back – a whole crowd of people are glad you are okay. A few others (fish in the sea) might be a little jealous.
Explicitly, Pearlsky is okay, too, right?
Glad you are back. Can’t wait to hear about what you are not yet telling us.
So glad to see you back, glad you are okay — cute girlfriend lol.
My oldest daughter has been in residential since she was 13. While her disability is very, very different that Pearlsky (my daughter is violently schitzophrenic, mildly cognitively impaired, among other issues), we asked ourselves all of those questions.
Yes, there were some deep losses involved in realizing that she needed 24/7 care that was not possible in a family home (even the best parents have to sleep at night). While I want to tear my hair out sometimes with her current nurse, overall it is clear to everyone that works with her that it was and remains the right choice. Most staff care deeply about the youth in their care — they certainly don’t get paid enough to be in it for the money!
We have met many families that have struggled with the residential question. One woman explained her reasoning to place her daughter in a home about 10 years ago: “She is an only child. When my husband and I die, she will need to go into a home. If I place her now, I get to choose the home rather than the state. If I place her now, she will have a routine and familiar staff around her to support her when I am gone. And to be honest, if I place her now, I will have less daily stress and may live longer.” Their daughter comes home almost every weekend and stays at the home during the week. They made it work for their family.
Some parents drop the kid off and run, rarely to be seen again. Other parents visit a couple times per week, participate in all medical and educational appointments and know all the staff by name. Placing a child in a home isn’t abandoning them.
I think all aspects of the family’s life need to be examined — the disabled child’s, other children in the family, and the parents — no one persons needs should be met at the total expense of all the others. There is a balance that works for each family. The trick is in finding the one that works for yours.
Totally agree with Erin. But the other issue is the quality of the residential facility. I don’t think parents would be ripping themselves to shreds about it as much if they knew there were always good placements available with good quality care. That is not always the case…from what I understand most of the time. So, the decision is all the more difficult and gut wrenching. I am lucky. I have tons of in home assistance. Now THAT is great. Still…can’t do this forever…
I was worried about you. I’m glad you’re okay.
We get 40 hours of nursing and 16 hours a month we can use for respite. At the moment we have a nurse that is helping. Still I quit my job three years ago to stay home and care for my daughter. The nurse we have had for over a year still makes critical mistakes. I can imagine mistakes would happen at a residential care facility too. The only residential care we are looking into right now would be for maybe a weekend stay or one night. This sounds crazy, but the husband and I haven’t had a night out in almost three years. We’ve been so focused on getting everything we need to care for our daughter – ramps, bath chairs, hospital beds, special car seat, pumps, hoyer, tubes, dressings, etc. After getting all of this together, and actually being able to care for her ourselves at home, we are in no way thinking of sending her to live in a residential facility. I agree with Claire though, we can’t do it forever. I see nothing wrong with checking out options. I should be doing it now for later years. It’s just hard to imagine. Just thinking about leaving her for an overnight is nerve racking, but we have to start somewhere.
As far as siblings, I hope our eight month old grows up to become an advocate for special kiddos. I’m going to try my best. She sees us showering her older sister with love and kisses. She goes to most of her appointments with us. Travel is going to be important. We are working on getting a van with ramp or lift. That’s going to make a world of difference. For us, having another child is pushing us to get out there and see what’s available for the “special” families. We went to the sensitive santa event at the children’s hospital. So, for now, we’ll just keep trying to find events that both can attend and worry about the later stuff, well, later. Yikes!
Whether or not they percieve and can appreciate the difference is so individual. I only cared for one man who had a relative who would visit. In spite of the fact that he wasn’t supposed to be able to tell the difference, any asshole could see that the visits were pure joy and that there was genuine grief at parting. Some residents became very attached to particular staff too – especially the residents that had been institutionalized since babyhood – and would develop depression and self-harming behaviors when those staff quit. Other residents showed no signs of noticing or caring who was around; if external stimuli ever registered, it didn’t alter their behavior.
I think it does matter what a person would do with themself after placement. The specifics aren’t important, but the average quality of life should be improved for all family members (inasmuch as you can qualify that sort of thing) otherwise, what’s the point?
Odds are most of “your kids” will end up institutionalized, since the higher quality of care gives them a fighting chance to outlive you. There is a lot of sense in finding a good, safe, secure placement before it is absolutely necessary.
Remember, too, that a lot of different kids end up at boarding schools, etc. All sorts of parents, with all sorts of kids, jobs, lives, and needs, sometimes send their kid to live somewhere else. Yes, some facilities suck. Others don’t.
My aunt (brain-injured, nonverbal, epilepsy/cerebral palsy) lives in a family home in Wisconsin. Home-cooked meals, comfy couches, four or five residents in the home. They recently built a couple more houses on the property, so the whole property has maybe twenty residents. The state pays for everything. Her room is painted pink with roses. She has teddy bears and photos everywhere, is dressed every morning in soft, pretty clothes, and spends her day playing with the egotistical lapdog.
Her mother cared for her til a few months before she–my grandmother–died. And quite frankly, it was more for my grandmother’s sake than for my aunt. My aunt’s happier now–we know both because she laughs sometimes, and because she doesn’t bite her hand or scream like she used to. She’s cleaner and the food’s better (my grandmother? not a great housekeeper, not a cook), the people caring for her have days off so they come in with more energy, and the whole environment is just happy and peaceful.
I have no idea what the answer is for you. I don’t know what the nearby options are. But it looks like the two most basic options are your son at a facility or your son with you, and you having both kids wouldn’t work for you, Pearlsky or David.
Please, don’t blame yourself. You aren’t superman. You don’t have to be superman. It doesn’t help anybody if you spend all your energy telling yourself that you should be better, should be this, should be that.
You love your kids. As human beings, it’s probably safe to assume they want to be loved. There. That’s a need met. You’re doing your job.
The people who care about me the most have firm instructions that I would rather die than be institutionalised.
I lived in a nursing home – 44 residents, aged 18-101, mixture of aging-related, physical and cognitive impairments – for 9 months. Neglect and emotional abuse were rampant. Lifespans were noticably shortened by the very poor care and almost nobody ever left the building other than in an ambulance or a hearse.
That nursing home won the very first award for dignity in care during the time I was living there.
I WILL kill myself rather than return to such a place and I’d kill any of my friends rather than see them in one, too. (Of course, I’d do anything and everything to keep a friend OUT of such a place, first – but I wouldn’t leave them there if it came to it.)
I am jealous – I want a girlfriend like that too.
Glad you are OK but sorry about the anxiety/pain regarding David’s upcoming birhtday.
Purple thoughts are with you.