[Barbara Rodrigues]

Hi Sunita:

As suggested I would ask your consultant for help or to look at therapy. That said – therapy shouldn't be aversive or the child shouldn't not want to 'play or learn'. When I was at the Lovaas conference way back when (1998) Dr. Lovaas said if the kids don't want to do therapy -the first place you look is at reinforcement – is it good enough – is it really what she wants/enjoys – is it being given at the right time,etc. etc. Also are the therapists making tasks too long – not reinforcing enough – do they go right to work or do some 'fun stuff' first – are easy tasks intersperced with tougher ones so she's not overwhelmed and she's successful. Does she get a choice? Dr. Richard Foxx said 'choice is the most powerful reinforcer'. Are the therapists motivating enough? Are her reinforcers ones that she gets only accessiable for school? Therefore making them more desireable,etc. etc. Does she get too much for free -therefore making it no fun to work when she has to? Do they do a reinforcer sampling? Are they (the therapists) always working and trying to find new/more reinforcers? Dr. Foxx also said 'he who has the best reinforcer wins'. Also remember just because she loved it yesterday doesn't mean she will love it today.

This is from Dr. Foxx's book – Increasing Behaviors –

"Each student has different reinforcer preferences and these vary from minute to minute, hour to hour, day to day, and week to week. Effective use of reinforcers requires a variety of reinforcers, immediate reinforcement and regular determination of each student's reinforcer preferences. Without effective reinforcers, students will not be motivated to learn."

My son also 'freaked out' in therapy after a few weeks – it was totally a 'reinforcement' problem. Even now (he's 14) my best therapists are the ones that know how/what reinforcers him and how to use it – those are the ones he smiles and gets happy to see or wait to see. The ones that don't 'get reinforcing' are the ones he 'freaks out' or runs away from.

Also when my son was freaking out – I would really praise him for going to 'school' and be so 'proud of him' after. Talk about what he did in/learned in school to daddy and make a big deal out of it.

Good luck.

Barbara

[Barbara Rodrigues]

Oh,it is so sad that this poor father has felt so bloody helpless that this is his only option. My heart breaks for him and his family. I had no idea of his health issues.

Roxanne you are right though -unfortunately if he goes into a coma and dies -he will get one day of major publicity and then some residual follow-up but he won't help his son (as politicians don't care and will say 'tsk, tsk, how sad but oh, well..) and his wife will be left alone and that poor son….

Do you remember the family up here (in Kelowna) they just wanted some funds to care for their adult son from MCFD – they were denied-he could be put in a home but they couldn't face that-they were getting older so they were worried about his future – so they all got in their motorhome (the son loved being in there and listening to country music) and the father routed the carbon dioxide in and they all died?? Bet you can't remember their names – I cannot. It was big news for a day and there was talk of change,etc. As we all know -nothing changed.

This reminds us that we all need to keep fighting and remain strong – indeed be there for each other as Cathy mentioned – but work so hard to get this system changed. Lives have been lost in this battle – too many due to the frustration and lack of help – let's not let there be one more.

On that note – I want to again thank Jean and all those of you that are working so hard to make a real change for our kids. I know it must be hard to be away from your families and your home. Thank you for all the time you take out of your lives to help us all.

Stefan – my prayers are with you and your family.

Barbara

[Barbara Rodrigues]

Deb:

My thoughts EXACTLY. I used to be a totally different sort of person than the one I am now. The stress of dealing with the child alone would change one's mental/physical health but then add the stress of trying to get the help our kids need….well, I also wonder "chicken or the egg".

Barbara

[Barbara Rodrigues]

Posted by Andrew Kavchak (Kavchak) on Tuesday, April 8, 2008 – 10:26 am:

>From the medical news today website…

Frankly, I think they are low-balling it. When one parent gives up
their full-time job, or reduces their working hours to part-time
status, and the other spouse is so stressed out that they stop playing
the corporate game to get the next promotion, then it seems to me that
suggested annual income losses $6,200 does not even come close to
reality.
___________________________
Andrew:

I totally agree with you. We lost a lot more than 6200.00 per year when I had to give up my job – also my husband ended up having to take another position so that he could remain in town (rather than traveling) and that resulted in his wages being cut almost in half. So the impact not only of the cost of providing treatment to our kids but then the cost of not being able to work is certainly much, much more than this article states.

Thanks for posting it.

Barbara

[Barbara Rodrigues]

Amber:

Years back – when I filled out the disability form – we also put in for deductions for treatment as there was no funding back in those days so you paid out of pocket 100%. Anyhow – Federal Tax fought me on the expense deductions but after appealing and winning that -they then sent me a nasty letter saying if I thought ABA was so great that my son would not get the disability credit and would have to be reevaluated at the age of 12. Unfortunately at the age of 12 -he still qualified for the disability credit but it still caused added stress as he had to be reevaluated by the drs. etc.

I think it's quite ignorant that the Federal Government would ask such a riduculous question as when do you expect your little one to be recovered. Did you keep a copy of the form the dr. filled out? Maybe go over it and see if what it says. Other than that I think you have to answer the questions (anyone else with tax law experience correct me if I am wrong). I am sorry you have to go through this -parents have enough to deal with without added stresses. Good luck.

Barbara

[Barbara Rodrigues]

Thanks for posting that Andrew. The part that irks me the most is

"The common therapy for children with autism, applied behavioural analysis, is only 13 per cent effect, Marino said, so it is important
to examine other therapeutic measures."

Where is her data on this statement – 13%??? ABA is (if done correctly is 100% affective in treating behaviors – teaching new skills – helping kids achieve)!! No it's not a quick fix and for many kids it's not 'recovery' – but for a kid like mine -without ABA he would no longer be in our home. Jemma – you are so right – it is such disservice to our kids and treatment when statements like this get out there. ABA is as our consultant always says 'damn hard work' but it works!!

While I am all for research -let's put our money into what science tells us works now and get treatment -full treatment for our kids now. Where's the funding for that?

Barbara

[Barbara Rodrigues]

RE: Autism Rally

Just wanted to send my heartfelt thanks to all of you that attend tomorrow. (I am up in the Okanagan and just can't get down there). I am with you in spirit.

Those of us (oldtimers) remember all too vividly what it's like when the Government cuts funding or offers no funding – there are no sure things for our kids and promises (as we all know) are never kept.

In the Okanagan there is a whole generation of young adult autistics who were lost -no treatment – they take them out to the malls – they put them in wheelchairs so they can be 'managed' better. It is so very sad. I wrote a poem about it years ago when my son at age 6 was cut off from funding yet again. I hope that maybe it will inspire those of you who are closer to attend tomorrow and come together for a few hours to show that we are all still a force to be reckoned with.

Again I thank you for taking the time out of your busy -hectic lives.

Do You See Them?

Do you see them, Mr. Premier?
Do you see?
They're the adults and it's outing day
They're at the mall
Though where they are matters to no one –
Themselves – least of all.

They are in wheelchairs but they can walk
Maybe once some might have even talked
Now most no longer even try
Many no longer even bother to cry.

Do you see them, Mr. Premier?
Do you see?
They are adults now but children with autism they used to be
Their lives seem of so little value to us all
Why, they are only societies burdens
Not productive at all.

These days you cannot get any eye contact
Their smiles are no longer real
Some are disfigured now . . .
From years of self abuse
Some are catatonic now . . .
From years of prescribed drug use.

Do you see them, Mr. Premier?
Do you see?
They have families. They are so very loved.
They lived at home when they were young
But without treatment – they never learned
They were never given the skills nor the abilities, it just became too much for everyone
Years ago, there was no alternative to this very sad outcome.

Please look at them, Mr. Premier
Please make sure you really understand
For more than 30 years of science tell us
That what you see here today
Well . . . it never had to be.

Do you see him, Mr. Premier?
Do you see?
The future I show you was to be my son's
My child's chilling destiny
But we have found Lovaas treatment
It will change this tragedy.

Years ago he was so lost
Never learned, nor smiled or laughed.
He was not yet two when he ceased eye contact
He pulled his hair, had a bald spot
He never slept, nor fed himself
Never played, just raged a lot.

Do you see him, Mr. Premier?
Do you see?
With treatment he is learning
He is so happy. He has a long way to go
But the road is so much brighter.
There are no institutions in this child's future.

You promised to help, Mr. Premier
You said you would give treatment to all
And we believed your words
Why you shook our hands
You smiled and looked us right in the eye
We never knew it was all a lie.

Do you see him, Mr. Premier?
Do you see?
Your government cut our funds
We had to scale back his therapy
His doctor's told you he would regress
We all warned you of this.

Mr. Premier, we pleaded and we fought
Then we even begged but no seemed to care
Do you see his bald spot?
Do you see it there?
He's doing it again . . .
He's pulling out his hair . . .

Do you see him, Mr. Premier?
Do you see?
He is an adult now . . . and it's outing day . . .

Barbara Rodrigues

Thank you -Thank you- Thank you -Thank you- Thank you to those of you that fought before me – fought with me – fought for me – fought after me -fight still. You are and will always be my 'Hero's'.

[Barbara Rodrigues]

HI:

This is for a friend – her son has special needs but not autism BUT she is having trouble in the sense that she trains his SEA and then they get 'bumped' for someone not as qualified but with more seniority. The new SEA he will have next year replaces the one he has now who can use sign and program his MT4 with one who has none of these skills but more seniority. Did anyone take on CUPE and win and does anyone have any info or helpful ideas including lawsuits to address this issue. Thank you in advance.

Please either post to this list or privately to me at westernad@hotmail.com

Barbara

[Barbara Rodrigues]

Hi Deb:

We had a fund set up for Jeremy I think it was through Heritage? Not sure will ask Joe when he gets home tonight. Anyway, about 5 years ago – we decided that it was silly to put money into something that (unfortunately) Jeremy was never going to be able to do – at the time we had no other children. We had just a letter from the doctor and I wrote a letter -they returned our money within a few months. I would keep on them and if they don't respond – I would do as suggested and contact the media. It's just horrible having to admit that your child will never be attending further education and the pain of accepting and dealing with that let alone have these people screw you around. Anything I can do to help – let me know.

Barbara Rodrigues

[Barbara Rodrigues]

Oh boy!!! I am spitting mad!!! Stockwell Day voted against Bill C-304! That guy – years of rhetoric and the gall to put my son and another son in his pamphlet he sends out prior to election and then to stab these kids in the back again!!!

I need to put what he has done in the papers – it will be printed – so please someone help me with some good points to say! I am so mad right now – a spineless jellyfish is all I can come up (and I know that won't work) I did send him an email though this morning – telling him I am mad and disappointed and will remember when the time comes for the next election. We are moving to another city but unfortunately for him – he's still my MP.

Barbara Rodrigues

[Author]

Posts