[FEAT BC Admin]

In this topic area, discussion is on all issues relating to setting up and running a home-based intervention program. Please feel free to bring up any problems or suggestions. Parents can help each other greatly by sharing information and giving suggestions.

In addition to parents helping parents, A.B.A. professionals on in the Discussion Group can also help provide insight and guidance.

Topic

[Maureen St. Cyr]

This message was prompted by Terry, but I guess it could apply equally well to all new parents, or at least those new to the world of science-based treatment.

First, the good news: The Auton decision and the hard work and sweat of many FEAT members over the last few years has paid off in knowledge and public awareness, even if it has yet to pay off in equal rights to medically necessary treatment for our kids.

So now, the bad news: The new awareness amongst the public concerning the truth about autism treatment has a lot of the mongers of babysitting services out there running scared. As a result, we see more and more imposters. By this I simply mean people who claim to be delivering proper ABA services (the "Lovaas" word still sticks in their throats), while what they are actually offering is the same old unproven, so-called treatments that were discredited in the Auton decision.

Unfortunately, a new family looking for help is hard-pressed to tell the imposters from the bonafide consultants. The bonafide consultants are those who actually spent years in school and working under the leaders in the field, honing their skills before hanging out shingles. The imposters read a few books on auditory integration and gluten free diets and got a B.A. from UBC's Education department. Who knows, maybe even an M.A. But what's that degree in, and who did they get it under? Does it have anything to do with legitimate autism treatment?

So, to new parents, my words of caution — you have little time enough to help your children without suffering the imposters. Thankfully we now have a few locally-based, properly trained consultants, EAP being the most prominent and best set up, but I understand Rachel Russell is back or about to be, and there are a couple of others. Come to a FEAT meeting and talk to other parents if you don't know which groups are worth talking to — and which should be avoided like the plague that they are.

Now, back to the specific question of EAP's waiting list and whether CBI provides a Lovaas ABA program.

1) I would personally never allow CBI, Gateway, the Laurel Group or anyone associated with the government's now-curtailed but still operational so-called "EIBI" program to get within 45 miles of my child.

2) EAP (the Vancouver operation set up by WEAP) are my daughter's consultants and I have the utmost respect for their training, expertise, style and professionalism. I was not aware until today that they already have a waiting list, but it doesn't surprise me — the very best are always in the highest demand, and the best consultants we've been able to attract to the Vancouver area have always had waiting lists.

I remember a few years ago when we first hired CEE out of San Diego. They also had a six-month waiting list, but I stuck Ariel on it, and while looking around, I kept phoning back and – well – kvetching them. It was less than a month and a half before they were up and getting her program on track.

It's simple really — ethical qualified caring people don't want to be out on a limb. They don't want to tell you, "yeah sure, we'll be there next month" when they're up to capacity and can't be SURE they'll meet that deadline. So they have waiting lists. And they always estimate longer than they really think…just so they won't be disappointing us later.

So here's my recommendation to all and sundry… Sign up for EAP's waiting list. Do the paperwork. Check out the other consultants who service the area and are respected by FEAT members you know and respect. Get on THEIR waiting lists too. And keep phoning and looking for ways to shorten the time. EAP has a waiting list for their local services, but WEAP came out here on workshops before they had their local office. Maybe you can get one of the Wisconsin-based people to come do workshops here until the local office waiting list thins out. If not, and the few other locals are full up too, you can still go with other imported consultants for the time being.

The important thing is not to wait, and not to fill in the wait-list time with bogus treatments that will do your child no good at all.

Oh, and one more thing — waiting lists tend to ebb and flow, because things happen. Two of EAP's families might move to Connecticut tomorrow, and suddenly they'd have two new available spaces. Or more of their staff in Madison might decide that the rain of Vancouver beats the snow of Wisconsin (hee hee). The point is, you never know what that waiting list time is really going to turn out to be, so get on them all — but only the REAL ones.

Avery

Ariel's Dad

[Susan Burns]

hi everyone…..i am happy to report that i came painfully close to putting my son into care again, and God and my friends helped me out. being delighted for the young kids now getting aba funding, i still long for $$ help for James who is now 11. THE POINT…. i spoke with revenue canada or whatever their new name is, and am asked to request a special ?permission to not pay taxes on pt therapists. tell me this isn't true, please. spbpt@pacificcoast.net

[Terry Suzuki]

Hi,
Thank you for the comment for KTY fund.
we would like to start in home based program a.s.a.p.
(within 2-3months)but WEAP has waiting list
for 6-8months.
Please give us suggestion about another providers
who do not have heavy waiting list.
CBI serves Lovaas type ABA program?
We live in Vancouver.
My e-mail address is aba@24i.net
Thank you

[Deleted User]

I also wanted to say Barbara…you always amaze me with the way you make your points…it goes without saying that Jeremy is VERY lucky.
I don't know of ANY other mother who walked the picket line, using her own body to try to protect her child. You ARE a hero not just for Jer, but for others.
It is just such a sad state of affairs that both Luke and Jer continued to be violated by our governments both provincially and federally.

I know you have literally walked to hell and back for your son.
I hope what has happened here in Ontario does not happen there.
At least your opponents there stick to their guns about unsubstaniated therapies and will continue to try to make money off the backs of our children with unproven an ineffective therapies, whereas here they ( not all ) suddenly switched to the other side of the fence once IBI money was up for grabs.

ABA has saved Luke, he too is not recovered, but like Barbara I now have a relationship with a loving happy child who wakes me in the morning with a " goodmorning mom". I don't know that he will ever be " indishtinguishable" but at this point I don't care, because the main thing is that through his medically necessary ABA treatment he CONTINUES to learn past the age of five and in fact his BIGGEST language gains have come AFTER his fifth birthday. NEVER say NEVER.

My only hope is that we will not be forced from our country again to secure funding and treatment for his autism.
G_d bless you Barbara.
Keep the good fight.
Norrah Whitney
fight4aba@hotmail.com
aba4u@earthlink.net

[Deleted User]

Thank you Barbara for your posting. It held alot of meaning for me and I am
glad you took the time and effort to write it. Bottom line – our children
are truly gifts from God.
—– Original Message —–
From: "FeatBC Discussion Board"
To: ;
Sent: Thursday, November 08, 2001 11:00 PM
Subject: Room Two: Behavioural Treatment Topics

> ————————————————————
> FeatBC Discussion Board: Room Two: Behavioural Treatment
> Topics
> ————————————————————
>
> By Barbara Rodrigues (Rodrigues) on Thursday, November 8,
> 2001 – 10:59 pm:
>
> Hi:
>
> This is in regards to the Options thread (I know it's almost
> the midnight hour). I just wanted to add a bit different
> point of view to the discussion. I also want to clarify
> that my personal references are no way about or related to
> Stephen, his son or his own personal choices as I have never
> met him or his son nor do I know them.
>
> First I have to disagree with the statements that any
> intensive therapy would help the 25% of children. You see
> our son had intensive sensory integration therapy for a
> period of 2 years -age 2-4. I was told and tried to engage
> in his stimulatory behaviors in order to turn take and
> increase his language, I gave him a 'sensory diet' I swung
> him, rolled him, had him jump on a trampoline, massaged him,
> moved him and spent many hours a day doing this for many
> many months. We used Natural Teaching Strategies (something
> the 'new' EIBI is incorporating), we did 'Theraplay, SLP,
> preschool, music therapy and tons of sensory
> movement/tactile things. After 2 years our son only further
> regressed. If we are to believe the therory that ANY
> intensive therapy will do the job, then I guess we should
> have just sighed and said there was no hope for Jeremy –
> that he was just one of the 75% of autistic children who
> will not improve. Luckily we didn't. We found out about
> science based treatment and read the research, had Jeremy's
> doctor read the research and started an ABA program.
>
> And yes, when we started out, recovery was all our goal.
> And yes, after 3 1/2 years, recovery was not to be. Should
> we now give up ABA and say – well, it's off to the group
> home for Jeremy? No of course not. Because although we
> didn't make it ala Catherine Maurice's children, our son has
> made gains that for him are nothing short of miraculous.
> This was a child who at 4 years of age – was unable to
> function beyond that of an eight month old. He has made
> vast and wonderful improvements in all areas. When we
> started Jeremy was lost in a world of rages and tantrums,
> self-stim and beginning self-injurious behavior. By his
> third Christmas, he ceased all eye contact with us – my mom
> calls this 'the day the lights went out in his eyes'.
>
> Today after 3 1/2 years of ABA, we have a very different and
> yes, very happy little boy. Academically he's doing great
> (mind you we are keeping him out of the school system at
> this point), he's toilet trained, he plays appropriately a
> lot of the time, and seeks out playing with many of his toys
> on his own!! He's learning to communicate on different
> levels. He has great eye contact. He rarely tantrums. He
> still has some outbursts but these are mild and not long in
> duration at all and decreasing as time goes on. Today at
> the age of 7, I have a little boy who can accompany me to
> the grocery store and do the weeks worth of grocery shopping
> while walking close to the buggy or close by. He helps put
> stuff in the cart and on the til for me. I am really proud
> of him for this accomplishment!
>
> Jeremy still has stims but each year they are progressing to
> more appropriate activities. For instance this year, he
> loves to throw rocks in the lake/creek, stimmy yes, but
> appropriate. At the playground last week, he went running
> up and climbed up the monkey bars and 2 little boys that
> were playing at the playground followed him and copied him.
> Then they all went running over to the swings together!
> Jeremy at that moment in time, was just a little boy playing
> with other little boys and having fun. It is one of the
> tear filled emotional memories that you hold in your heart.
>
> Point is and this is mainly towards those of you who are
> starting out with little ones- recovery may not be in the
> cards for all of you-but since you are just starting out aim
> for it!- but please remember that if it's not in the future-
> your child still has a chance at a future, at a good and
> productive life.
>
> I have had some tough times in this journey and I have been
> discouraged but I always managed to stay on track – maybe
> it's easier for me because we had so many therapies done
> that did absolutely nothing to help our child- it was easy
> to see and read the data on the improvements that ABA gave
> him. Easy to stay the course sort of speak. I also believe
> that if your child isn't showing gains, yes, you need to
> change consultants, get a different new perspective, etc.
>
> So many parents I know, started ABA and when their kids
> didn't recover gave up or started off on different paths –
> looking for the 'cure' the magic bullet that would fix
> everything right now. Remember the 'secretin fad'? So many
> people I know start mixing up the ABA with other things that
> ABA is no longer really practiced yet they say 'oh it
> doesn't work'.
>
> I also want to say that Jeremy runs to greet his daddy when
> he comes home from work.
>
> As the years go on, I am able to enjoy Jeremy more and life
> with him gets a little easier. My husband works out of
> town a lot so after therapy it's Jeremy and I most of the
> time. One night, Jeremy was reading so I put his snack by
> him on the couch and went to the loveseat to drink my tea
> and read my magazine…a minute later, Jeremy got up and
> came over and sat down beside me with his snack…he picked
> up his books and we sat there on that loveseat for over an
> hour, just reading and eating and just being a mom and her
> son – enjoying some quiet time together.
>
> Thanks for taking the time to read this. Give your kids a
> hug for me.
>
> Barbara
> Jeremy's Mom
>

[Barbara Rodrigues]

Hi:

This is in regards to the Options thread (I know it's almost the midnight hour). I just wanted to add a bit different point of view to the discussion. I also want to clarify that my personal references are no way about or related to Stephen, his son or his own personal choices as I have never met him or his son nor do I know them.

First I have to disagree with the statements that any intensive therapy would help the 25% of children. You see our son had intensive sensory integration therapy for a period of 2 years -age 2-4. I was told and tried to engage in his stimulatory behaviors in order to turn take and increase his language, I gave him a 'sensory diet' I swung him, rolled him, had him jump on a trampoline, massaged him, moved him and spent many hours a day doing this for many many months. We used Natural Teaching Strategies (something the 'new' EIBI is incorporating), we did 'Theraplay, SLP, preschool, music therapy and tons of sensory movement/tactile things. After 2 years our son only further regressed. If we are to believe the therory that ANY intensive therapy will do the job, then I guess we should have just sighed and said there was no hope for Jeremy – that he was just one of the 75% of autistic children who will not improve. Luckily we didn't. We found out about science based treatment and read the research, had Jeremy's doctor read the research and started an ABA program.

And yes, when we started out, recovery was all our goal. And yes, after 3 1/2 years, recovery was not to be. Should we now give up ABA and say – well, it's off to the group home for Jeremy? No of course not. Because although we didn't make it ala Catherine Maurice's children, our son has made gains that for him are nothing short of miraculous. This was a child who at 4 years of age – was unable to function beyond that of an eight month old. He has made vast and wonderful improvements in all areas. When we started Jeremy was lost in a world of rages and tantrums, self-stim and beginning self-injurious behavior. By his third Christmas, he ceased all eye contact with us – my mom calls this 'the day the lights went out in his eyes'.

Today after 3 1/2 years of ABA, we have a very different and yes, very happy little boy. Academically he's doing great (mind you we are keeping him out of the school system at this point), he's toilet trained, he plays appropriately a lot of the time, and seeks out playing with many of his toys on his own!! He's learning to communicate on different levels. He has great eye contact. He rarely tantrums. He still has some outbursts but these are mild and not long in duration at all and decreasing as time goes on. Today at the age of 7, I have a little boy who can accompany me to the grocery store and do the weeks worth of grocery shopping while walking close to the buggy or close by. He helps put stuff in the cart and on the til for me. I am really proud of him for this accomplishment!

Jeremy still has stims but each year they are progressing to more appropriate activities. For instance this year, he loves to throw rocks in the lake/creek, stimmy yes, but appropriate. At the playground last week, he went running up and climbed up the monkey bars and 2 little boys that were playing at the playground followed him and copied him. Then they all went running over to the swings together! Jeremy at that moment in time, was just a little boy playing with other little boys and having fun. It is one of the tear filled emotional memories that you hold in your heart.

Point is and this is mainly towards those of you who are starting out with little ones- recovery may not be in the cards for all of you-but since you are just starting out aim for it!- but please remember that if it's not in the future- your child still has a chance at a future, at a good and productive life.

I have had some tough times in this journey and I have been discouraged but I always managed to stay on track – maybe it's easier for me because we had so many therapies done that did absolutely nothing to help our child- it was easy to see and read the data on the improvements that ABA gave him. Easy to stay the course sort of speak. I also believe that if your child isn't showing gains, yes, you need to change consultants, get a different new perspective, etc.

So many parents I know, started ABA and when their kids didn't recover gave up or started off on different paths – looking for the 'cure' the magic bullet that would fix everything right now. Remember the 'secretin fad'? So many people I know start mixing up the ABA with other things that ABA is no longer really practiced yet they say 'oh it doesn't work'.

I also want to say that Jeremy runs to greet his daddy when he comes home from work.

As the years go on, I am able to enjoy Jeremy more and life with him gets a little easier. My husband works out of town a lot so after therapy it's Jeremy and I most of the time. One night, Jeremy was reading so I put his snack by him on the couch and went to the loveseat to drink my tea and read my magazine…a minute later, Jeremy got up and came over and sat down beside me with his snack…he picked up his books and we sat there on that loveseat for over an hour, just reading and eating and just being a mom and her son – enjoying some quiet time together.

Thanks for taking the time to read this. Give your kids a hug for me.

Barbara
Jeremy's Mom

[Karen and Donald Davis]

Hi to everyone

In regards to the Kindergarten Transition funding again. Typical government double-talk I see happening. It is such a sad situation that the government makes each individual family fight for the same goal. Will it ever be solved in our lifetime?

What I failed to mention in regards to holding our son back from kindergarten is that the block rate (special needs of $12,750.00) the Ministry of Education would have paid to the school Darold is registered at is paid to supported childcare for his one-on-one worker at preschool.

The sad part is that the School District in Chilliwack will only pay $10,000.00 of this and keep the difference for themselves. We had to go through 5 1/2 months of jumping through hoops, writing the same letter over and over to different people higher up the ladder to tell them that we needed most or all of this funding. Finally, they decided that we were right and we mutually agreed on an amount.

I don't know how it is in other school districts but I would assume it is the same. The MOE pays the money and whether your child is held back or goes into kindergarten at the appointed time, this money should be used for a one-on-one worker. In Chilliwack they have a "special needs" division that helps "oversee" this.

I would be interested in hearing how other school districts work.

Karen Davis
– Darold's mom

[Catherine Cooper]

I am responding to the dicussion regarding the kindergarten transition program funding.

Our son is 5 1/2 and currently enrolled in kindergarten. We received written confirmation in June that funding for a kindegarten program was in place and that decisions were being made in regards to the amount of funds and how to administer them. We have since been told that funds in the amount of $1080.00 per month were available to each family in our region whose children were of kindergarten age and these funds could be used towards a program up to the year 2003. We have been told by our MCF social worker that the funds would be paid to the service provider of our choice. We our beginning an ABA program with E.A.P. beginning in November. According to our MCF social worker a contract would be set up between MCF and E.A.P. and that the $1080.00 would be paid directly to E.A.P. and we would pay the balance of costs i.e. therapist wages, etc. etc. We chose this method as it was the least complicated and involved only one contract being set up. We could have used the funds to pay for therapist wages however each therapist would have to set up a contract with the Ministry and this seemed more complicated. Also, we felt we would loose some control over our therapists in terms of wages, etc. etc.

To date we have received no written confirmation of this funding and a contract between the ministry and E.A.P. has still to occur. We are keeping the faith that this will happen and will continue to phone, write letters etc to ensure that it will happen. We will also continue to advocate for funding to be available past the age of 6 should our son still require an ABA program.

Catherine
(Sam's Mom)

[Deleted User]

re: kindergarten transition money

My situation is somewhat similar to the previous post. I was intrigued to here that Karen was told of the program in March, here in Maple Ridge we just received wind of it in the end of August.

For those of you just hearing of it now, or who have not been told but are eligible here is the information I know. To be eligible your child is supposed to be in kindergarten or grade 1 however there are several of us who held our kids back from K and are actually still in preschool. You are responsible to create a proposal based on your child's needs. Here in Maple Ridge we were not given an option of an organization running it – it is all individualized. My proposal included my daughter's preschool aide who is not covered by MCF or supported childcare(don't even get me started on this tirade) and the three "child care workers" (their term not mine explained below)that work with my daughter. I submitted for all of their monthly hours and while I haven't received my authorization yet, I've been told that my proposal has been approved.

The proposal needs to include the rate of pay for therapists. MCF wanted a daily rate but I provide hourly with a total of hours per month. The funds in our area are being administered by supported childcare. The funds are for CHILDCARE WORKERS. this is what was outlined to me by mcf. However it is okay to use the funds for speech path services, ot, one woman at our meeting wanted to use the money for daycare and pull ups. Essentially you get to use it to your discretion providing you use their terminology.

To be honest, the amount of info available on this is pretty slim. with all the changes happening, I wouldn't count on it lasting though…

[Karen and Donald Davis]

Hi,

This is reply to Terry Suzuki in regards to information on the KTY funding.

We chose to hold our son back from kindergarten for this year and continued to enroll him in preschool with very intensive one-on-one work there as well as ABA therapy at home.

We live in Chilliwack and are currently receiving funding from the CDC in Abbotsford who is administering the distribution of funds for this program.

There are 2 ways you can do this program;

1. Set up your program (ie ABA therapist, speech, O.T. etc…..) and have your team members bill directly to the CDC and they will get paid; or

2. Have the CDC help you with a program (if you already do not have one).

This program is currently being funded for children between the ages of 4.5 to 6 years of age to help assist them in that difficult transitional year from preschool (where our son is thriving) to the school system (which we are deathly afraid of).

We currently are funded $1,000.00/month which allows us to pay for our therapist, o.t. and speech pathologist. We will have this funding until our son turns 6 next July. So, we are going ahead full force with our program. We were beyond lucky that we know someone who is trained in ABA, and works with our son at preschool too.

The planning of our program, as most of you know, takes time and energy, but the rewards have been tremendous. I really like our option of screening and hiring our own people as I feel more in control of what is going on and what is in the best interest of our son.

I don't know where you live so I am not sure if there are other Child Developmental Centres out there doing this. As well, we had heard about this program last spring and I immediately called and got placed on the list for when funding became available. I think there are currently 20 or 30 children receiving this funding in the Valley (but please don't quote me on that. I can find out though).

After 3 years of struggles to get programs going and receiving any type of funding to help with the financial side, I feel relieved that we finally got something. But, autism doesn't end at the age of 6 and we will keep on fighting the strong fight.

Karen Davis
– Darold's mom

[Author]

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