I'm new here

[Barb]

I just found your group on google groups and I didn't have alot of time to read old threads, so I will ask the group, are you a group of people living with autism or a support group for parents of autistic children, or maybe a combination of both? I recently got primary placement of my autistic 11 year old step son and was just looking for some hands on advice on some things. Thanx in advance.
Barb

[Phil W Lee]

Post by Barb
I just found your group on google groups and I didn't have alot of time to read old threads, so I will ask the group, are you a group of people living with autism or a support group for parents of autistic children, or maybe a combination of both? I recently got primary placement of my autistic 11 year old step son and was just looking for some hands on advice on some things. Thanx in advance.
Barb

Welcome to ASA.
We're a combination of both, and of course, not really a google group
- they just provide a (rather broken) web interface onto usenet, which
is where this group really is.

I'm actually both all in one person, since I'm on the spectrum, and
two of my sons are as well (all with diagnoses of Asperger Syndrome),
so a carer with the experience of having been there myself (not that
it necessarily helps).
I also have two neurotypical children, so it can be quite a party, at
times!

What part of the world are you in?
We have people here from all over the English speaking world, and a
few for whom English is not their first language.
It's rather quiet on here these days, as most activity has moved to
web fora, so I may be a little out-of-date on who is still around.

Phil

[d***@fsmail.net]

Post by Barb
I just found your group on google groups and I didn't have alot of time to read old threads, so I will ask the group, are you a group of people living with autism or a support group for parents of autistic children, or maybe a combination of both? I recently got primary placement of my autistic 11 year old step son and was just looking for some hands on advice on some things. Thanx in advance.
Barb

Hello Barb.

I think we are combination of both. Why not ask some questions? As the group is not very active some people are only checking back occasionally so you might need to check back every week if people don't appear to be answering.

Dolphinius
(Male, age 40 +/- a few months, UK, self-diagnosed AS)

[Chak]

Post by Barb
I just found your group on google groups and I didn't have alot of
time to read old threads, so I will ask the group, are you a group of
people living with autism or a support group for parents of autistic
children, or maybe a combination of both? I recently got primary
placement of my autistic 11 year old step son and was just looking for
some hands on advice on some things. Thanx in advance.
Barb

Hi, Barb,

I came here 5-6 years ago when my grandson was diagnosed, and found
wonderful help. The group isn't as active as it was, and I only check
in occasionally, mostly reading, not posting.

You should probably just go ahead and ask whateve questions you have,
although you'd probably find the archives really revealing.

Chak

[Barb]

We have recentely gotten custody of my fiance's kids (yipppeee after a long drawn out battle) and one of them is an autistic 11yr old boy who has never had any therapies or services, so he is now coming from an environment where he was basically given his way consistantly just to stop his fits, to an environment where we have rules and he has other syblings and needs to share, etc.. He is super smart and fully capible of learning and has actually made some progress, his fits are less violent now as he is learning that gets him no where and just ends up hurting him in the long run when he hits himself, etc..

My question is more how to make this transition and learning period easier on him, other than being consistant which I already do. We have an actual diagnosis for him now and are on a waiting list for services as after age 8, they don't have alot availible to help him.

Barb

[d***@fsmail.net]

Post by Barb
We have recentely gotten custody of my fiance's kids (yipppeee after a long drawn out battle) and one of them is an autistic 11yr old boy who has never had any therapies or services, so he is now coming from an environment where he was basically given his way consistantly just to stop his fits, to an environment where we have rules and he has other syblings and needs to share, etc.. He is super smart and fully capible of learning and has actually made some progress, his fits are less violent now as he is learning that gets him no where and just ends up hurting him in the long run when he hits himself, etc..
My question is more how to make this transition and learning period easier on him, other than being consistant which I already do. We have an actual diagnosis for him now and are on a waiting list for services as after age 8, they don't have alot availible to help him.

Sorry, I have no first hand experiences myself to suggest anything here. However, it sounds like he may respond well to rules. If he does not respond well to any rules then the key thing is to explain to him why the rule exists.

Dolphinius
(Male, age 40 +/- a few months, UK, self-diagnosed AS)

[Barb]

Post by d***@fsmail.net
Sorry, I have no first hand experiences myself to suggest anything here. However, it sounds like he may respond well to rules. If he does not respond well to any rules then the key thing is to explain to him why the rule exists.
Dolphinius
(Male, age 40 +/- a few months, UK, self-diagnosed AS)

Thank you for answering as best you can. In response to explaining to him why the rules exist, I don't really know the best way to get the "why" accross to him..is it a matter of constant repetition or some other way?

I hope I don't offend any of you with my words I'm about to post..keep in mind I don't know exactly the right words to express my thought process. When I read the posts here by autistic people, I get so excited about what I call "free thought and free expression" my son doesn't have the training (I won't say ability, because I believe he is perfectly capable and that I just have to learn better how to teach him) to hold conversations and express things other than basic needs which I am working with him to use complete sentences for (and he's doing great with it with only a little prompting :) I really think that when the day comes that he can have actual conversations, I might just cry tears of joy at the sound of it.

I had a really beneficial IEP meeting at his school and I really feel that they are so willing to dedicate the time and patience to working with him as well as his father and I to get him to the next level in his coping and communication skills. In talking to them I took away the impression that getting my son to the next level in communication is like actually training his brain to respond in situations. Is that an accurate assumption? I wish that I could be in his head for a day so I could understand better how to teach and train him for these things.

I think that part of what I am dealing with when it comes to him comes from me knowing that at his age he is "set in his ways" and I know it's a challenge for any person to change long standing habits and my heart breaks when I think about how hard it must be for him having autism on top of it. I realize that in the long term, he will be happier and less confused by situations, with the focus we are putting in to him now, but short term, there are times when I feel like he sees this as a punishment.

I don't know if the words make sense to anyone reading it, it's really hard to put my feelings into words that convey what I am actually trying to say. Any thoughts or input would be greatly appreciated.

[a***@gmail.com]

Post by Barb
Thank you for answering as best you can. In response to explaining to him why the rules exist, I don't really know the best way to get the "why" accross to him..is it a matter of constant repetition or some other way?

I agree whole-heartedly with dolphinius. "Why" is crucial to understanding the importance of rules. The reasons should be logical and sound. For example, to a possible question of "why must I wash my hands before eating?", one can explain that hands pick up dirt and germs through regular use, and to reduce the amount of said germs from being transferred to the mouth, one should wash their hands with soap and water. Or, for more ambiguous situations, for example, "why should I say 'yes, ma'am' or 'no, ma'am'?", one can explain that it is a show of respect and courtesy when responding to someone's question, which is important, especially in formal or professional/educational situations.

Taking a moment for yourself to think of why a rule is in place for yourself is a good way of finding the words to explain it to him.

-alice

[d***@fsmail.net]

Post by Barb

Post by d***@fsmail.net
Sorry, I have no first hand experiences myself to suggest anything here. However, it sounds like he may respond well to rules. If he does not respond well to any rules then the key thing is to explain to him why the rule exists.

Thank you for answering as best you can. In response to explaining to him why the rules exist, I don't really know the best way to get the "why" accross to him..is it a matter of constant repetition or some other way?

I think I know what you are talking about here. It sounds like you have tried to explain the why, but it hasn't had an effect.

Depending on his level of comprehension (which may be higher than you think) he may be able to understand what you are saying, but he isn't listening. His mind may be on something else.

Maybe he has listened and understood, but each time he automatically follows the same behaviours as before and doesn't remember (or remembers too late). Being autistic he won't pick up on your body language as a signal to stop.

My mother took the repetitive approach in trying to change my behaviours, but I just felt like I was being nagged.

I think what you might need to do is to accept that it will take time to change the behaviour and each time it starts you need to ask him to stop it (in as non-nagging a way as possible) including reminding him of the reasons. You will need to be patient and accept that it could take 10 or 20 reminders. That assumes that he is willing to co-operate (but just finds it difficult to change).

Post by Barb
I hope I don't offend any of you with my words I'm about to post..keep in mind I don't know exactly the right words to express my thought process. When I read the posts here by autistic people, I get so excited about what I call "free thought and free expression" my son doesn't have the training (I won't say ability, because I believe he is perfectly capable and that I just have to learn better how to teach him) to hold conversations and express things other than basic needs which I am working with him to use complete sentences for (and he's doing great with it with only a little prompting :) I really think that when the day comes that he can have actual conversations, I might just cry tears of joy at the sound of it.

Does he have access to a computer? He may find it easier to read and write than to listen and speak? You may think it is bizarre two people in the same house writing each other e-mails, but that might be eventually what he feels ccmfortable with and it might lead to quite fluent written communication.

Post by Barb
I had a really beneficial IEP meeting at his school and I really feel that they are so willing to dedicate the time and patience to working with him as well as his father and I to get him to the next level in his coping and communication skills. In talking to them I took away the impression that getting my son to the next level in communication is like actually training his brain to respond in situations. Is that an accurate assumption? I wish that I could be in his head for a day so I could understand better how to teach and train him for these things.

I relate to that. As an adult now I have learnt reasonably good social skills, but only in situations I am familiar with (e.g. drinks after work with work colleagues). My brain doesn't respond quickly to anything that I am unfamiliar with. If I know that someone is trying to tell a joke I will [pretend to] laugh if everyone else does. However, if there is a spontaneous moment of humour (maybe one that arises accidentally) I will be stony-faced for a few seconds until I realise that I should be smiling or laughing.

That is just an example of what I am now like. Most of what I have learnt was, at some previous point in my life, not yet learnt.

Post by Barb
I think that part of what I am dealing with when it comes to him comes from me knowing that at his age he is "set in his ways" and I know it's a challenge for any person to change long standing habits and my heart breaks when I think about how hard it must be for him having autism on top of it. I realize that in the long term, he will be happier and less confused by situations, with the focus we are putting in to him now, but short term, there are times when I feel like he sees this as a punishment.

One way to get change is to give him a lot of notice of what has to happen and to explain in advance what is going to happen. For example, here is some advice on Christmas:

http://www.autism.org.uk/living-with-autism/at-home/coping-with-christmas/christmas-and-autism-spectrum-disorders.aspx

Post by Barb
I don't know if the words make sense to anyone reading it, it's really hard to put my feelings into words that convey what I am actually trying to say. Any thoughts or input would be greatly appreciated.

I would caveat that I am not sure if my thoughts will be useful. The problem here is that I try to give advice based on my own way of thinking and experiences. That can be helpful to an extent, but I was not in the same situation as your step son (I was communicating well at age 11; much more a high-functioning autistic). However, maybe they will prompt some ideas?

Dolphinius
(Male, age 40 +/- a few months, UK, self-diagnosed AS)

[toto]

Post by Barb
We have recentely gotten custody of my fiance's kids (yipppeee after a long drawn out battle)
and one of them is an autistic 11 yr old boy who has never had any therapies or services, so
he is now coming from an environment where he was basically given his way consistantly just
to stop his fits, to an environment where we have rules and he has other syblings and needs to
share, etc.. He is super smart and fully capible of learning and has actually made some
progress, his fits are less violent now as he is learning that gets him no where and just ends
up hurting him in the long run when he hits himself, etc..
My question is more how to make this transition and learning period easier on him, other than
being consistant which I already do. We have an actual diagnosis for him now and are on a
waiting list for services as after age 8, they don't have alot availible to help him.
Barb

How verbal is he? I think you need to get a handle on how his
receptive language is before you can figure out the ins and outs of
helping him.

Self-injury is quite a difficult thing to deal with. I am glad his
fits are less violent now than they were. Of course, the first thing
that you have to do is be consistent in not giving in to fits. The
second thing is to try to immediately reward him when he asks politely
as long as his request is reasonable.

Does he have sensory issues. Read the book, The Out-of-Sync Child by
Carol Stock Kranowitz to see if you can figure out which sensory
systems are out of whack. Then read the sequel, The Out-of-Sync Child
Has Fun for some activities that might help him cope with sensory
overload.

Is he in school? Has an evaluation been done there? Can you begin to
get some services started at the school with an IEP (if you are in the
United States)?

Rules can be a good thing, but as others mentioned, he needs to
understand why you have them. If he is verbal, but also can use
pictures, an Ipad is a good investment because you can show him the
rules and your reasons for them in writing or pictures.

My grandson is 8 now and we pay privately for speech therapy and
occupational therapy (not much since his great OT just had her baby
and is not available, so we are waiting for her to return). He gets
pullouts for academics at school despite being perfectly capable of
doing the academics from the regular classroom. He cannot do the work
in the larger class of 24, so a class of 4 to 6 for that work is very
helpful for him.

There can be a lot to work on with a child diagnosed so late.

Good luck!

[Barb]

Post by Barb
I just found your group on google groups and I didn't have alot of time to read old threads, so I will ask the group, are you a group of people living with autism or a support group for parents of autistic children, or maybe a combination of both? I recently got primary placement of my autistic 11 year old step son and was just looking for some hands on advice on some things. Thanx in advance.
Barb

That's some good advise Dorothy...I am working with the school and he has an IEP...I have a question for you..are the same Dorothy I used to talk with on a parenting newsgroup years ago? I saw Toto as your sign in name and thought hmmmm....plus your wording sound just like what the Dorothy I "knew" so if you're not her, you are for sure her Dopolganger :)

Barb

[toto]

Post by Barb

Post by Barb
I just found your group on google groups and I didn't have alot of time to read old threads,
so I will ask the group, are you a group of people living with autism or a support group for
parents of autistic children, or maybe a combination of both? I recently got primary placement
of my autistic 11 year old step son and was just looking for some hands on advice on some
things. Thanx in advance.
Barb

That's some good advise Dorothy...I am working with the school and he has an IEP...I have
a question for you..are the same Dorothy I used to talk with on a parenting newsgroup years
ago? I saw Toto as your sign in name and thought hmmmm....plus your wording sound just
like what the Dorothy I "knew" so if you're not her, you are for sure her Dopolganger :)
Barb

LOL. Yes, I am probably the same Dorothy you new some time ago. I am
not on usenet much though, so this took a while to answer.

My usenet sig is still the same as it used to be and I am still around
Babycenter once in a while.

[aquarianmonkey]

Post by toto
I am still around
Babycenter once in a while.

Babycenter! I almost forgot about that place! That is where you first met me and brought me here!