hard questions | Autism PDD
Donny has been away from that school for many months, right? Did he have contact with those people during that time? To me, not having recent experiences with the people, place and tasks, means that they might be "new" on some level depending on the child.
For example, my youngest son (who has social delays but no diagnosis yet) has an extremely detailed memory for places, but not such a good memory for people he didn't bond with and has trouble remembering routines. So going back to his old preschool building wouldn't be a problem, but the people and the demands might be stressful.
I hope your meeting with the principal goes well. Maybe the school will go for a behavior assessment by a true blue expert.
Good luck with everything.
Please don't give up on school! I know it has got to be so hard on him, though. WHY isn't he going all day? Don't they legally have to have him in school all day, and also try to get him into some inclusive activities in a reg. ed room on occasion or something? This just doesn't seem right - why only 1 and 1/2 hours? Did you request the short day? Why can't he just start going to school like everyone else? I am not saying WHY are you doing that, i am just curious
Hope that doesnt sound weird on the internet. I am just curious as to how this was decided, if you dont mind me being nosey. I just remember reading about how schools HAVE to take special ed kids for full days of school, I'm sure you know that already.
Don't worry about the future, just think about the here and now. I know it is hard, hard for me too. If you do want to get into a little planning. maybe you could do some outpatient type of care, with highschool during the day and outpatient care at night but he would still come home to sleep at your house. I don't think it always has to go to the institutional setting as the big answer, but again just throwing my 2 cents in as it would take a LOT, like constantly fearing my child would kill myself or another family member, for me to put them away. I just really dont like the idea of institutions at all for anyone but especially not for teens because they get too big :( Whatever happens, you will know what choices you need to make when it comes. I'm sorry you are faced with such tough questions about your child! OK sorry this is kind of rambling I am up WAY too late
Tough decisions. Homesschooling might be a way that he would be most
relaxed and doing his best but is that going to give him the skills he will
need as a grown-up? What are the services for adults where you live - is it
group homes with aides or his own apartment with aides? When you
decide where to school him keep in mind which grown-up environment
he needs to train for.
I am pretty sure that my son would do much better with homeschooling
but the social component is what he needs most work at and exposure to.
And I have also worried about the bigger and stronger thing. My ds has
not really been agressive but he is very tactile and does not always have
the best judgment. He is also putting on pounds and inches fast all of a
sudden. Yesterday he kicked his four year old sister in the stomach twice
and it really drove it home to me that I need to deal with it because he
does not learn the way a typical kid learns. No answers yet.
Keep us posted.
Your little one sounds just like one of my former clients. My team and I were successful in integrating him into a public school for 3 years with the help of Ross Green. He is a wonderful psych and I really enjoyed working with him. Have you read his book THe Explosive Child? We used his book as the model for the program we developed and it worked well for this child.
Donny's mom I want to offer my support to you as I went through many similar incidences with my ds who is now almost 200 lbs...what does your son's doc say hun??We had to get ugly and involve Children's Services in Alberta to get some answers
WE now have an excellent residential program with weekend home visits and an on site school
Our ds is slowly learning how to cope with the world and people
There are all kinds of professionals and planning/goals for ds and we are moving forward which is something that i never thought would happen
Our old doc. said there is a program in Burnaby BC which is only to be found in Winnipeg otherwise in all of Canada
There is help out there and it is not forever ... our ds will be back for good one day and in the meantime he is learning awesome skills the most important self-regulation (he breathes....deep breathing and listening to calming CD) before moving on with a stressful situation....does Donny like music?
Sorry this is so long I just really feel for you and want you to know don't give up on Donny
You have been through so much already and always hang in there
He is so blessed to have a momma like you
I think school just needs to return back to old way of doing things.The rooms are not mulitsensory enough these days. I have no advise just thinking of you and praying for you. [QUOTE=zayzer]
My son used to scratch and meltdown to get to the
computers. Last school year they were removed from the class for a
period of time because the teacher did not know what else to do. He was
observed by a BCBA and for him they came up with planned ignoring
which did work. He was only 5 then (now 6) and only 44lbs but he could
have the mother of all meltdowns. He got nothing. Then the computer
was reintroduced as a reward and it did cause more self stim behavior
aftwards but it seems to have calmed down now. Maybe removing the
computer for a while would be a better idea.
It appears that they don't have good control of the situation at school
and need to come up with a plan to address the behaviors better.
Running to the library when he is not supposed to and getting rewarded
by having the computers is not OK. As long as he gets what he wants he
will keep doing what works for him.
You're right. The problem is, there are computers in every classroom in
the school, as well as in the Library. If Donny encounters a locked door,
he flips out and gets aggressive. They can't lock him in a room while he's
at school - for one thing, none of the rooms lock that way (only lock from
the outside), for another, he would become very aggressive, and start
picking up and throwing furniture. School is completely out of control,
but nobody seems to know how to fix it. They can't "make" him comply,
he's too big now
I think I remember you saying before that he has the same people working with him. Maybe that needs to change. Maybe he knows them too well. Maybe he needs male aids who have just as strong a will as he does. Ones who have an air of confidence about them. Agression or not the school should not let him have the computer if he uses inappropriate measures to get to them. It is going to be really hard but he should not be able to use his behavior at school to control the environment. The bigger he gets it will get harder like you said. Someone at the school needs to address this now so he can get the education he needs and deserves.
I'm sorry. I wish I knew the answer.
This is really tough. You have some hard decisions to make. I would not give up on school. I don't know what to say. I wish I did. If the computer in the library is something he loves then only let him have it as a reward. If he bolts and runs for the library without asking for a break with PECS then don't let him have the computers. My son is obsessed with the computer but he can only have it as a reward(at school) and negative behavior does not get him what he wants. I know its hard.
Good Luck
My son used to scratch and meltdown to get to the computers. Last school year they were removed from the class for a period of time because the teacher did not know what else to do. He was observed by a BCBA and for him they came up with planned ignoring which did work. He was only 5 then (now 6) and only 44lbs but he could have the mother of all meltdowns. He got nothing. Then the computer was reintroduced as a reward and it did cause more self stim behavior aftwards but it seems to have calmed down now. Maybe removing the computer for a while would be a better idea.
It appears that they don't have good control of the situation at school and need to come up with a plan to address the behaviors better. Running to the library when he is not supposed to and getting rewarded by having the computers is not OK. As long as he gets what he wants he will keep doing what works for him.
(((Donny's Mom)))) The swimming does sound promising. I agree with Norway and others about the floor hockey. He was probably too far gone and overstimulated and really just needed out.
You have some very tough decisions ahead of you. I'll be thinking about you and your family.
thanks for all the feedback.Just to clarify a couple things - school is not new. This is his third year at
this school. Every year he's worked out of the same room, with the same
two TAs. They involve the same children in playing with him. His
routines don't change. So Don definitely knows what to expect there, and
doesn't need to get used to something "new". As for computers, right
now they're trying to make it a reward at the end of the day. The thing is,
Don wants it when he wants it. If they don't let him have it (by blocking
access, or unplugging it), he becomes VERY aggressive. He's about 90lbs,
so this is a big issue. To be honest, I'd rather he didn't use the computer
at all. Computer based learning is great, but the internet is awful for
Donny. He's completely obsessed with it, and it has a negative effect on
him. After he's been on the computer, Donny is more stimmy,
persevorative, obsessive, and escalated in general. It makes him start
cycling super fast, and we see a lot of manic behaviours and thinking,
including delusional thinking, which gets very dangerous, very quickly.
I'm going to call the Principal this morning, and see if we can arrange a
meeting to at least talk about my concerns.
Donny's mum - first of all you TOTALLY ROCK !
Second my son usually does better at places after a week - not saying that a homebsed program may not be ultimately better for him or anything like that - just syaing if you can possibly make it - to try it out for a little while longer - of course the bigh caveat is that you know DOnny more than we do so you will have better instincts about that
Sarah loved gymnastics without the ribbons:) It was quiet enough to follow directions without getting overwhelmed. Lots of jumping on trampolines and into foam pits..swinging on ropes and bars and hopping around:) You are a super mom and wished I could help somehow...sending positive vibes that the right people can intervene and get both of you some relief..(((HUGS!!)))Very hard questions. I agree with Norway mom about the floor hockey and disagreeing with the coach, he was way past the point of no return on that one. The swimming one sounds promising though and letting the coach handle that one sounded like a good point. I know its hard sitting back and watching, I have been running into that with Andrew, he screams at everyone at OT/speech, if he was verbal I'm sure he would be cussing us all out. I feel like I should step in and take care of it. its a little early on making the decision for school, maybe give it a couple of weeks? And as far as social exposure it sounds like he would get more of that at the swimming then at school. Maybe that could be the place for social exposure if you decide to stop the school. And it might be more successful too since it sounds like something he really liked and was so successful for the first 20 minutes.
I hope this all works out for you and Donny. By the way, you are a wonderful mother.
Perhaps home-schooling should be looked into, no matter how scary it may appear. I waffled for several years before finally jumping off the cliff and homeschooling my two older children, both with learning differences/disorders, and it has been an excellent decision. I'm now seriously evaluating doing the same with my son.
Socialization is important to us all, especially to those of us involved with ASD children who are aware of how much time they spend in their own world. Most educators use the "socialization" argument as a criticism against homeschooling for NT children, let alone children on the spectrum. However, school actually creates an artifical world of same-age peers subject to a basic total authority, not a true microcosm of what society really is. So even if a child learns to function in school, as they age into the real world, they have to learn to function all over again within those rules and dynamics. And we all know from the stories out there just how successful our educational system has been with helping special needs young adults make that transition!
A home-based program, done right, can create an environment that will help Donny develop a solid foundation on which his ability to handle more challenging situations can be developed. It would certainly bear considering, and I know from your previous posts you do your best to thoroughly evaluate all your options before moving forward.
A book I just finished and found highly helpful is Home Educating Our Autistic Spectrum Children - Paths Made by Walking, edited by Terry Dowty and Kit Cowlishaw. It might provide you some additional insight as you wrestle with these difficult questions.
You'll make the right choice.
((((hugs)))) & thinking of you.
Only thinking out loud here, if he is on meds, could he use an adjustment? When things are getting stuck in our situation I always forget to consider that.
It's been a couple of roller coaster days.We had our transition meeting, to arrange Don's return to school, last
week. The meeting went moderately well. They're starting Don out
very part-time (an hour and 15 minutes per day), building gradually
up to full-time by the 1st of October. I had to really push for them to pin
down a date. They're putting in the referral for our district's autism team
to come observe and make recommendations (FBA and Positive
Behavioural Support Plan). Was supposed to be taken care of last spring
so it would be ready come September, but what can you do?
Yesterday was Don's first day. It was okay. He did well the first 20
minutes, staying on task. His "task" isn't challenging - it's dictating and
drawing toys to cut out and glue into a make believe toy store. Donny
works by himself with two aides in a self-contained classroom. After 20
minutes, Don bolted from the room. The aides tried to get him to use his
PECS to request a break/change/leave the room, he refused. He ran to
the library, and got onto a computer, which was being used by the
librarian. The aides were able to coax him onto a different computer, and
set the timer. Timer went off, he refused to get off. They tried various
methods, no success. He finally left the computer when they said "Mom
is here. Time to go home".
Got home, was VERY escalated. Hurt the dog :( Perseverating, obsessing,
mildly delusional. He relaxed somewhat after a couple hours. Then it
was time for his first session of Special Olympics Swimming.
That was moderately successful, or very successful, depending on how
you look at it. The first 20 minutes were GREAT. He followed
instructions, looked at what the coach and his teammates were doing,
and was totally focussed, copying them. I was so proud of him! Then
he'd pretty much reached his limit and wanted to just do his own thing.
The coach stayed on top of him, repeatedly bringing him back to the
group. Donny mouthed off a lot, but didn't hit anybody, and did comply
somewhat. I felt compelled to intervene when Don was being rude and
not participating, and was doing so, but the coach asked me to back off.
He explained that he was alright with handling it, and Donny needed to
learn to listen to the coach. It was a good point. I did back off, and the
lesson finished uneventfully. Rest of the evening went well.
Today, Don was really tired. He is in a bit of a depressive cycle, which
contributes to that. School today was worse than yesterday. He worked
for less time, and was very oppositional and cranky while working (the
work was similar to yesterday - all stuff that is geared to his interests).
Bolted for the computers. got to the library, which was locked. Rattled
the door a bunch, and said he was going to kill everyone. Aides were
able to get him to do some talking about feelings work with the promise
of computer at the end of the day (remember his day is only an hour and
fifteen minutes long). When he had his computer time, the computer
froze. He started punching the computer and table. They moved him to
a working computer, and had him set the timer. When the timer went off,
he freaked out, again saying he was going to kill people, but did get
ready to go home. Was screaming the whole time, even up to the point
where his Dad greeted him at the front door to the school. Very escalated
at home, but calmed somewhat.
Tonight was his first night of Special Olympics Rythmic Gymnastics. It
was off to a shaky start, and when I realized what it actually involves, we
bailed. I thought it would be summersaults, etc., but it's not. It's
ribbons, balls, and hoops - nothing else. I wanted him in it for the
exercise and the sensory input, but he wouldn't get it from that, and
would be bored and thus act out. So, we checked out floor hockey, which
his foster brother and his one friend is in.
It was pretty disastrous. He had about 45-60 minutes total of meltdown
time. I was going to take him home, but the coaches really encouraged
me to let him stay, saying he needs exposure to other environments (a
good point). It was awful, watching, and not helping. Screaming,
spitting, hitting the coaches, rolling around on the floor. Spitting and
blowing snot into his hands, then slurping it up. Telling everyone to
shutup. Saying "I'll kill my mother!". Crying "poor Donny", then more of
all the previous. There was some good points, where he calmed down,
followed direction, and tried playing. Eventually, he bolted outside. I
caught up to him at the same time as the coaches. He asked to go home,
and I agreed. He was just so horribly overstimulated :( cried the whole
way home, then would switch to manic laughter, then crying again. Got
him medicated, showered, and into bed.
I then had a really good long chat with dh as well as my cousin, who
works in the same field as me (she supervised a group home, has been a
pri-care provider, is the 1-1 for my foster son, does respite, etc.), and
was there tonight supporting my foster son.
I'm faced with making really tough choices about Donny's future, about
his schooling, about what his day-to-day life should look like. From what
my cousin saw tonight, and everything we've told her about school, she
doesnt' think school is good for Donny, and dh and I are inclined to
agree. but it's really scary considering pulling him out of school and
doing a home-based program instead. And I'm so worried that it will be
this tremendous fight to get the school and Community Living BC to
jointly fund a day program for Donny to meet his educational needs...
I worry about the lack of socialization. He NEEDS to meet people, have
friends, have relationships. He can't do that if he never goes out. He also
can't do that if he's at school, really, because he can't handle the
environment, no matter how modified, and his inability to cope leads to
behaviour that frankly scares the crap out of the other kids. Everytime he
is unsuccessful, his self-esteem plummets.
We've spent all summer building it up as best we can, and I'm so scared
that it's going to be quickly undone with school off to the start it is...
Also, the question was again brought up, not just by my cousin, and us,
but also by a friendly acquaintance I ran into shopping today, who knows
Donny and is also a foster parent, and inquired after him: what will we do
when he gets bigger? What happens when Donny is 13? 15? 18? He's
only going to keep getting bigger and stronger. It's possible, likely even,
that he will never be able to cope with stress or handle frustration, that
he lacks the physical ability and intellectual capacity to reason through
his emotions. He is going to get very dangerous. How will we keep him
and us safe? If keeping everyone safe means Donny can't live at home,
where will he go?
These are hard questions, with no easy answers.
Not really looking for answers, just support and other points of view I
guess...
Boy, what a tough couple of days, both for you and your sweet boy.
I must say I disagree with the coach about staying at floor hockey. Yes, your son needs exposure to other environments, but there's a time and a place for everything, and after the challenge of starting school, it seems like he wasn't ready for the challenge of yet another new environment.
I'd be reluctant to give up on school so early, but at the same time I can definitely see why you have your doubts. It seems like new environment plus new people plus new demands is just too much for him, so the equation needs to be changed.
I really hope you can find a good solution. I'll be thinking of you. Keep us posted.
thanks everyone.To answer a few questions:
Yes, Don is on meds. Risperdal, Seroquel, Epival (Depakote), Paxil, Fish
Oil, and Vit E. It's a good med combo for him, and took a lot of tinkering
to get it to where it's at. He's actually going through a minor med
adjustment right now - his Paxil's been decreased to try and decrease his
cycling.
Technically, yes, the school has to provide more than an hour and a half
per day of service. However, it doesn't have to be IN the school building.
Because Donny's aggression poses "a danger to himself and others", they
have all sorts of leeway. Canada's laws are way behind the US when it
comes to special education, although we're slowly catching up.
He's only going part time because it's all he and they can handle. He
typically does well, at anything, for 20 minutes. That seems to be his
threshold for most things that involve attending. And that IS with
reinforcers (tangibles and praise) and breaks built in.
I should clarify a couple of things:
I'm not considering a residential placement or even after-school
placement for Donny right now. Things at home are pretty good. We've
gotten the hang of managing and supporting his behaviour for the most
part, and are all in a good routine. I do worry about what happens down
the road, if he gets more aggressive than he is at home right now, if he
gets really bad like he was last winter...I can manage with that for awhile
still. We'll make some adjustments to his bedroom, so that I can lock him
in, if he's being aggressive, for his and my safety. As long as I'm still able
to get him down to his room, things are okay. And don't get me wrong,
when he's doing well, aggression at home is pretty minimal. For
example, in the last month, he's punched me on two occasions I think,
and grabbed me maybe half a dozen times.
Also, by a home-based program, I don't actually mean homeschooling. I
mean him having a support staff who takes him out in the community and
possibly even to school for an individualized day program, but have the
option of coming home ans supporting him here on days where he
doesn't cope well. So he would still be getting socialization. It would be
ideal, because he'd be practicing skills he'll use as an adult. All those
social skills and other skills needed for community access.
To be honest, I'm NOT willing to homeschool him. My hands are full as
is, between parenting Donny and my two high needs foster kiddos, and
then with work and running a non-profit org on top of it. I LOVE
my son, but I just don't have it in me to be his teacher on top of
everything else.oh, and I have the explosive child. Great book, but very hard to apply
to Donny.
Don's a bit of an enigma, he kind of falls right between high and low
functioning. He's verbal and bright enough to get into all sorts of trouble,
but has a level of aggression and reasoning typical of someone much more
severely affected. I think it's just the way his various disabilities interact...
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