I assume you will be able to visit BEFORE she is placed. And that you have seen what the structure means. I have a friend whose son was placed in a residential school in Mass (no, not the one that uses aversives....that was not an issue) when he was around your daugther's age. He spent 4 years there and made SO much progress that he is now coming home, a different boy. The early years of puberty can be SO hard. I think that if your daughter needs a residential placement, she needs it. Of course, you should be in control of what her program is. If you see anything that sets off alarms in your gut, ask to get to the bottom of what's bothering your about the placement or look elsewhere. Please let us know how it goes.
Thanks Tzoya. I think you probably know of the place...it's Maryhaven in Port Jefferson. We have visited and of course it's not the Ritz but everyone was very capable and the program seemed to be what my dd needs at this point. I also hope after some time, she will be able to return home. Again, it's so close to home that I can take her out every weekend.
Thanks...I'll keep you posted.
Phyllis
Does anyone out there have their child living in a residential setting? My DD just turned 15 and we are most likely going to have her placed in a residential school not too far from home. She is classified as PDD-NOS, mild-moderate MR, bipolar amongst other things. Her IQ has dropped dramatically over the last 2 years.
This is one of the hardest things we've had to decide, but we feel that she needs to be with other young teens in a more structured environment.
Thanks
Phyllis
I would think really hard about what is meant by "more structured environment". That tends to be (in the jargon of the actual schools) a jargon term that means something other than what parents are led to think it means.
Thank you for your insight. It is much appreciated.I know someone whose sister lived there for a long time until she aged out at 21 and now lives in a group home run by Maryhaven. Another parent in my SD has her daughter living there. Both girls seemed happy. The whole Maryhaven system is very familiar with developmentally disabled kids and has a good reputation. One of the teacher's in our local Middle School used to work there in the school (as you know, there are also day students at the school) and this teacher is great. She clearly loved the kids. I know it will be helpful that your daughter will live close by. She will also get visits home with a worker, most likely. Keep us posted.
Thank you Joan and Kathy:
I feel a little better about this now. I know it will be hard at first, but I think she would be happier.
Phyllis :)
I placed my 14 DS last september. It was heartbreaking at the time and I really thought that life could not go on without him being home. My biggest fears were could they take care of him like I could, would he feel like we abanded him, would he not love us anymore. These were far from what happen Chris loves it there he is so less stressed and has grown in so many ways I never thought possible. He has made many great strides in the last 7 months. The hardest thing know it that he calls that home and does not like to spend a lot of time in our home. His home is about 25 min. from us so we visit 2-3 times a week.
kathy
tzoya, I know a woman who was first diagnosed with childhood schizophrenia at the age of 14 (by a student of Bettelheim no less) and autism at the age of 42. She absolutely did not have normal speech, she could barely speak at all until around when she was 12, could not reliably string sentences together until around 20. She also had massive behavior problems and trashed classrooms every chance she got, sometimes assaulted teachers, once I think threw a school principal over her shoulder (while very small and young and wearing a brace, she still doesn't know how she did it). She would never have been mistaken for what's come to be known as "mild" or "Asperger's" or "normally speaking" as a child, and yet those are the ages at which she was diagnosed.
I really hate this stuff about age of diagnosis actually meaning anything. I wasn't diagnosed until I was 14 either. And this had more to do with the blinders other people put up for themselves than anything about myself being "normal" or "close to normal". It would be good on an autism board to not encourage people to use the same blinders, regardless of whether this girl ends up being exactly what sort of person you thought she was or not.
Also, being verbal and being able to communicate about experiences are two totally different things. I could speak when I was 15-16 and in a residential placement, but I could only say what I thought was expected of me, much of which was false information. I did not understand as much the concept of speaking to convey experiences. I could not convey that I was experiencing severe medical problems (that eventually warranted emergency-room treatment several times, after other people noticed them). I could not tell anyone that my psychologist was beating me to make me look at him. I could not tell anyone all the awful things he was saying and doing to me and other people there. All my parents understood to be bad about the place came from their own observations. Not my descriptions. This is why for years they thought the place was abusive towards them (because it blamed my mother for my "schizophrenia" which is what my label got changed to when I got there) but had no clue it was abusive towards me. So no, being able to speak (some of the time, at any rate) gave me no safeguards. I would have told people I was happy there (I was actually terrified and miserable 24/7, as well as twice the toxic levels of the prescribed drugs as later measured in a blood test, so totally zombified), and I would have told people whatever "symptoms" they expected out of me (because as in the Donna Williams interview I described, I'd learned to play along with the expectation that I was "going crazy"), but I would not have been able to tell them the real day-to-day events very much if at all, unless I heard them modeled for me first.
I also was not able to tell people much about the abuse in a previous institution (that I'd been at off and on for most of that year, and the last stay had been two months then transferred somewhere then transferred to the residential place) and how the staff had tried to kill me at one point. Or the fact that there were bruises all over me, or that the "takedowns" were provoked by the staff. I was in my twenties when my mother was still trying to tell me the only reason they did these awful things to me was because I was hurting people, and I had to explain to her that they grabbed me for sitting still, they grabbed me for sitting in the wrong place, they grabbed me for no reason at all and used my struggle as an excuse to tie me down, etc. She had had zero idea of this, she had simply accepted their word that the only time they did this stuff was to prevent self-injurious or otherwise destructive behavior. I also had no chance to tell anyone the things staff talked about when they thought I wouldn't hear or repeat them. Much of which was about how I was essentially disposable and a waste of time.
So please don't treat a child being verbal as some kind of safeguard against this stuff. Being verbal means you know how to form speech sounds with your mouth. It does not mean you know what to tell people. It does not mean you know how to connect words to your thoughts with any reliability. It does not mean that you aren't simply repeating what you think you have to say or are required to say in some manner. It does not mean that you will be able to report abuse.
I think that autistic people with "behavior problems" are at some of the most risk because it's really easy to claim that we do things we didn't do, but that sound plausible to people who know us. And it's our word (if we even have words we can usefully employ in this) against theirs, and who are people going to believe? gtto39273.4477546296
GTTO, YOUR POST JUST ADDS TO THE THINGS THAT MY SON MIGHT HAVE GONE THRU..WE KNOW HIS HAIRED WAS PULLED TO MAKE HIM LOOK AT PEOPLE, WE KNOW HE WAS CALLED FAT..I NEVER USE THAT WORD, AS THE MEDS CAUSE WEIGHT GAIN, WE KNOW HE WAS VERBALLY ABUSED AS THE WORDS "FU** YOU " HAVE COME OUT OF HIS MOUTH WHEN HE WAS IN MELTDOWN STAGE.
i KNOW ,OR SO I HAVE BEEN TOLD THERE ARE GOOD GROUP HOMES OUT THERE, BUT EXCUSE ME IF I CANNOT SEE THAT AT THIS TIME. ALL I CAN SAY TO ANYONE PUTTING THEIR CHILD IN A HOME...CHECK IT OUT ALL THE TIME...
[QUOTE=gtto] Also, being verbal and being able to communicate about
experiences are two totally different things. I could speak when I was
15-16 and in a residential placement, but I could only say what I thought
was expected of me, much of which was false information.
So please don't treat a child being verbal as some kind of safeguard
against this stuff. Being verbal means you know how to form speech
sounds with your mouth. It does not mean you know what to tell
people. [/QUOTE]
I just thought these parts were worth repeating...gtto brings out some
great points. She is RIGHT ON, as far as being verbal vs. communicating.
Even with my experience, to this day, my family does not know 100% of it.
While I was in the hospital, they knew nothing. For one, they barely saw
me, and most 'updates' were given to them by nurses and/or doctors NOT
me. It is hard to put into words all I felt, and at the time, my ability to
communicate was also altered. I stuck to the basics, and put on a good
show--i.e. only told them what I thought they wanted to hear. After a
few days there, I felt less a part of my family then before I went in. Our
communication was very limited, I really became disconnected & distant
from them, & more 'bonded' w/ the other patients. This, I will tell you,
can be very UNhealthy--I believe it led to some of my issues being worse.
Also, one thing to always remember is victims of abuse, be it sexual,
verbal, or physical often won't speak of the abuse. Patients who are
abused often have additional fear in that if they do speak up, the abuse
will only worsen.
There simply is NO way for anyone to grasp that experience unless you
have been there behind those walls. gtto's experience was much more
horrific & longer than mine, but I have some small idea of what hell she
went through--I saw terrible things happen to others right in front of me.
No child or adult should have to go through anything like that for even
one hour of their life.
I know parents struggle because professionals may be telling them one
thing...I just hope their eyes are really wide open. And, that the reason
for looking into a placement is for the child/adult's well-being NOT due
to professionals biased points of view on a certain disability (& that
patient/person's worth & future potential) and/or because the person/
child is an "inconvenience." I am not implying the the original poster or
any parent on this board is guilty of this. I'm just making a general
statement here, because unfortunately, a lot of placements occur because
of those two reasons.I don't know... I have had (and still to some extent have) real problems with communication that go deeper than language production. A few years ago, despite quite good typed communication, I had a gallbladder emergency. The only sign was I got more and more withdrawn. I could not tell anyone I was in pain until I was specifically asked, and then I could not tell the location. I had been seen by a gastroenterologist for symptoms related to it, and he'd actually dismissed the entire thing as me being fat and lazy, never eve done any tests. I'd been seen even before that by a physician and he hadn't done any tests either. This was years before. (I had early-onset gallbladder disease, runs in my family, first had symptoms in childhood.) Anyway, by the time I got to a doctor, I was near-incapacitated by pain and still not really talking about it or making painful facial expressions or anything. There's a thing they do where they press on your gallbladder and if you scream it means there's a problem, and I didn't scream. They didn't think it was gallbladder at all, but then when they ran the test it was a gallbladder emergency. The surgeon was very angry that nobody had run enough tests before, because I was in a really bad state by then. And I was in a lot of pain, I felt it certainly, I would lie down in the middle of the sidewalk sometimes from it. But I couldn't properly communicate about it, so it was treated as weird behavior for quite some time. Especially because I wasn't grimacing or groaning.
There are two elements to that. One is autistic perceptual stuff. Bad body awareness combined with not knowing which things to talk about and which things not to talk about by standard conventions. But the other is that people in the system are often taught to ignore pain. There are many stories of people with diseases that would put most non-disabled people in bed, but people with developmental or psychiatric disabilities will be trying to get up and go to work, because we are trained that our pain or illness does not actually exist and is not worth noticing.
(So far every time I do manage to report something, it shows up on a test or responds to the standard treatments in a way that shows it's definitely real. The problem is that I report so little and in such vague ways that it confuses people as to what's really going on. And plus there is prejudice towards people who look like me in the healthcare system and that doesn't help either.)
But really for me there is, the fact that for a long time I really could only say what I thought was "required" to say, rather than say what I was thinking. The fact that I don't always know which part to talk about. Trouble grasping the words for something unless I have heard it discussed before. (Even if I understand it perfectly fine before I do know the words.) And many other things. Those all conspire to make communication about things definitely difficult.
Yeah I spent about 1.5 years total in what I'd call "standard" institutional settings (psych institutions and residential facilities), but spread out over 2 years time. (When not in them, I was pretty much confined to my parents' house, and my parents didn't know what to do so they sort of emulated the institutions, so it was often it felt the same to me, in or out.) Then overlapping with that a couple years in settings that were fully segregated but "in the community", what I call a "distributed" institution, so that I had day programs, wraparound programs, special education, and many other things like that, and then home, and it was almost exactly like being in an institution except that the distances were longer and I got to live at my parents' house during it. So there was no clear dividing line for me, it was like a gradual fade, that still leaves me kind of permanently uncertain where the line is drawn. (Took me a long time to accept I had a kitchen and not "kitchen privileges" -- this is one of the problems with making these places look more "homelike", is that then you start getting really confused.)
The person who talked about group homes and stuff... also, I get the same level of services or more that many people get in group homes, but where I live it's mostly done in individual apartments. You either get people coming in, or you live with a staff person as a roommate. And you can live wherever you want as long as you can afford it. The level of assistance isn't any different from congregate places, it's just that you're able to have your own place.
I'm glad you went further into this, gtto. My p.o.v. & experience is from
me being considered NT, and yet still had some issues getting my needs
& truth across. I know our dd never complains of pain, unless you touch
her fingers. I have learned to be a super detective in trying to see if she
is ill. Even her doctors now will run labs on her, because they've seen her
have a serious infection & only look a little tired, but not crying in pain. I
have read of others like you who are often overlooked if/when they
complain of pain, or have difficulty describing the symptoms. Also, docs
may just relate the pain to depression, anxiety, paranoia, etc. Thank you
for being specific on this, it's defenitely something all of us parents must
be aware of.
Where you live & the services you receive sound great (finally for you!). I
hope that such programs only grow in the future. It's ridiculous the lack
of services/supports, and the lack of public awareness for those that are
available. We are starting to set aside a trust for our dd, so that the help
will be there for her, if she needs it. Elle2239273.6343865741
You know gtto...you bring up a really good point about being verbal but maybe not being able to tell what is really going on.
How much of it is due to age of the person do you think as far as this stuff goes. For instance...I have two for sure NT children (well pretty much) My daughter is 13 and I would think that she would be able to tell me that her step mother was abusive verbally and emotionally but I never heard about any of it until recently. She did however tell me that they won't let her wear the clothes she wants to wear etc etc etc. Well...I always knew that the step mom was strict but some of the things that are comming out of my daughters mouth now are like OMG! When I asked her why she never told me these things before she just said, "I dont' know" Like it never even occured to her that she was being verbally and emotionally abused. I truely believe she became sooooo used to it that it just wasn't one of her big complaints about being with them over there. (have hired a lawyer by the way)
Anyway....my question is this..(sorry got off topic) Do you think that adolescence or tolerance to what is going on around you would play a part in the "Not telling" or even people not asking you the right questions? Just curious.
karrie
I will just add--from personal experience (as a teen I was inpatient at a
psych center for being suicidal, depressed, ADD, & eating
disorder)...please be VERY involved in the entire process. My stay was 1
month inpatient & then another month for daytime-only, it was a private-
pay place & all in all was nice, clean, etc. It was helpful to me & my life,
this facility had art & music therapy, and for the most part, was very good
for me.
BUT, there were things there that were not right. Bad stories that I won't
go into here--just really bad (stereotypical psych ward stuff you may
think of, yes that stuff really does happen). If my child were nonverbal, a
HUGE concern of mine would be making sure he/she were able to
communicate all needs & fears, etc. Things go on in lots of those places
that the family NEVER learns about. Some things are not big deals, others
are major violations. To some extent, it reminds me of my uncle who was
in Vietnam--he didn't speak about most of his experience--except to his
'brothers.' The bond that I had w/ the other kids there was simlar to
soldiers in war. There was stuff I could only talk to them about & only
they could relate to it. No one knows what it's like to live in that type of
setting unless you yourself have done so. Be nosy, ask questions, &
assure your dd you are there for her. ALSO, make sure you tell her ahead
of time of everything...it is KEY that she trust you.
One doc wanted me on a LOAD of drugs 12 hours into my stay.
Generally, they prefer to dope patients up--easier for staff to deal with--
at least in the beginning. Unfortunately, a lot of these drugs have not
been studied on children & in psych wards, they generally don't do that
slow-dose thing. So, they load these kids up, and then deal w/ the side-
effects....I saw kids battling all sorts of new side effects, often making
what they came in for much worse.
I was very paranoid about medication, and wanted to try to 'get better' w/
o drugs. Upon admission, everyone seemed in agreement, and they'd see
how things went for 24-48 hrs. Well, I was on 24-hr constant
supervision, had NOTHING I could hurt myself with...so why the need for
drugs? This nurse & doctor were yelling at me--BAD! They told me my
parents had agreed to this medication, but, because I had trust in my
parents, I KNEW the nurse was lying. So, I told them if I spoke to my
mom & she said to take the meds, then I would. Well, the nurse left and
never came back w/ more drugs. My parents were horrified at what had
occurred when they finally found this out. Yes, I eventually needed
medication, but that came when a female psych came on my case
(important for me, didn't trust men) and I felt like I had a say in it. To this
day, my mother says part of her regrets ever putting me in there, but they
were scared to death of losing me. I don't think they had any other
options at that point, I did need professional help. But, there was
defenitely the bad w/ the good at this facility.
I would just be fearful for children/adults who cannot verbalize or
comprehend as I was able to. I would ensure that any parent placing their
child in any psych or residential setting research all they can, asking tons
of questions, and to trust their gut too. It's nearly impossible for people
who have been "on the inside" to recommend placement, as it's an
experience you can't imagine unless you've been there. This was long,
but it's something I'm passionate about. I hope I gave a balanced
perspective. As a parent now, i can't imagine having to make that
decision.
ELLE2 ..THANK YOU FOR YOUR POST, IT MAKES WHAT I HAVE BEEN SAYING ABOUT MY SON ALL THE MORE REAL.THANK YOU..
Thank you,
Michelle
The sort of residential setting that's being talked about here is for children who have far more involved issues than your daughter has. These are children who would NEED help 24 hours a day. Not for an Asperger's teen who feels isolated. These are, for the most part, not kids who will be getting a typical high school diploma. Higher functioning kids who are placed in residential settings are put there because they are a danger to themselves or others. For Asperger's kids, that usually means they have become suicidal to the extent that they cannot safely be taken care of at home. Some others have become VERY, VERY aggressive. This is not boarding school. It's intense 24 hour care and is not appropriate for kids whose problem is that they are being bullied in school due to their Asperger's Syndrome. For that, you can get an attorney and possibly get the District to pay for a private day school. This is called a Carter case and you need a good special ed attorney (and lots of money up front) to go that route.I don't understand this. She didn't say Asperger's, she said her daughter was diagnosed with PDD-NOS and felt isolated. I was diagnosed at 14, unofficially with autism and officially with PDD-NOS (and on paper somewhere as "low functioning" although I hate that term), and I could feel isolated too, feeling isolated isn't just for people with the Asperger label. I don't like the immediate leap to conclusions about the rest of someone's life and label because they feel isolated. Any kind of person can feel isolated. I'm also from the Bay Area originally BTW.
That said, these residential places are generally not a good place to live. I did happen to be "aggressive" and all that (at least after various experiences), and was continually being bounced back and forth between home and various psych ward s(the doctor actually told my mom at one point that most parents didn't even try to keep kids like me at home) before being put first in a children's hospital then in a residential placement from hell (it no longer exists or I'd un-recommend it for you, it closed down while I was still there). I wouldn't wish that place on my worst enemy, and yet if you fall into a certain category they think somehow putting you in a place like that is going to help.
But, no, they're not places to go because you feel isolated. They're also not places to go for much of any reason, most of them. "Care" is a misnomer for what goes on in a lot of those places. I hate when people draw lines because it makes it sound like for some people, it's appropriate, and the stuff that goes on in many of those places is absolutely not appropriate for anybody. But when I was in them I was obviously considered in the category to need them. Blech. (FYI, I learned "aggression" in the psych system.)
Thank you gtto...I also had a BAD experience with my son in a group home here in California..all I can say is be careful...BE VERY CAREFUL......since I have had my son home there are many aides who come into my home and help...several of which have worked in group homes..the things I have learned that happen behind close doors is nothing short of terrifying. Just please keep your eyes open...The worse mistake I ever did was place my son...he had behaviors coming out before the home, now they are worse...I know sometimes things have to be done..just ask questions,show up on surprise visits and alsway follow your gut. Here in the Rockies you can place yoru child with autism in a special family home at any age for any amount of time and it is paid for by the states - do you not have those? It is basically getting 'respite' for overnights, etc, meaning your child has two homes, but instead of you having 24/7 care for him or her, you get breaks and lots of them. OF course you would want to really really interview the family he /she lived with!!I can't speak for group homes everywhere, but I can definitely speak for
the ones I've worked in, here in BC, Canada. The homes I work in are
good places, offering a good service, and the staff are skilled and kind,
and dedicated to the people they support. The homes are licensed and
run by a non-profit society, and have to conform to various standards.
Abuse doesn't happen, period.
There are a lot of positives to group home living, such as increased
independence and social opportunity (versus staying at home, or family
care, for the individual who needs support in activities of daily living). A
drawback is that there is, of course, reduced choice. We try to encourage
opportunities for personal choice as much as possible, but when you have
several people living together, that does limit things. For example, the
folks who live in the group homes generally don't get to pick their
roommates (although moves when it's not a good fit are common, and
compatability is always looked at when choosing placements), and
because their are several people, they might not always have choice in
what meals are offered that day, or what activities.
Certainly, it's not perfect, but it is pretty darned good, IMO. I love my job,
care deeply for and have tremendous respect for the women I work for,
and hope that group homes like this are around when Donny's older.
Autumn-- I have never heard of that here in NY.
I happen to know the home that Phyllis is talking about. It is not isolated or abusive, but it is for kids with pretty severe degrees of disability. Since, when a child is below the age of 22, the schools pay for these placements, the IEP Team must determine that the child NEEDS a home of this kind. Whatever the diagnosis, the placement in a 24 hour care school is based on a determination that no less restrictive placement COULD work. That generally means suicidal or aggressive tendencies, severe self-injurious behavior, a tendency to run away or some sort of incorrigibility that the parents can no longer handle. Sometimes it's also done in cases of child abuse by the parents when no foster home is available. There may be other reasons for placement, but they must be reasons that make it CLEAR that being at home and going to a day program of some sort will not fully address whatever the problem is. At least that is how it's done in New York, where this home is located.
You are right that the mom didn't say Asperger's. In fact, she said PDD-NOS. However, since it took such a long time to discover this, my picture of the child is a verbal, higher functioning, Asperger's type. The mom mentions bullying at school. Residential faciities are not designed as escape from bullying. I stand by my assertion that what we are talking about here is not like going to a boarding school. At least in my state, these facilities are designed for kids who, if placed in less restrictive environments, do not function competently.