[FEAT BC Admin]

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[Deleted User]

This is in response to Tony… first of all, what a burden! My heart goes out to you, not only are you struggling with setting up a program and accepting this drastic change in your life, but you are also struggling against many difficult forces.

While I have not faced anything as difficult as you are facing, I have faced a relative who is not always supportive and who feels it is her place to make "comments" on how we do things and our children's lives and who also sometimes works against our programs.

We found that after over a year and half of comments and barbs and attempts to undo our hard work that we could not change this person. We attempted to train and inform but to no avail. Ultimately we found that this person was undoing the hard work our team had done. We realized that they would not change their perspective, that their assumptions and their choices to go against our wishes were based on their thoughts that they knew better than us. This sabotage was even secretive in that we were told one thing but actions displayed otherwise. (I used to show up "early" to pick up my kids or drop by unannounced only to learn that my child's extremely expensive programming was being undone).

My husband and I sat down and came up with our plan for our kids and our "policies" on what we felt must happen. We then seperated ourselves from this person to a degree. This was hard to do but we just became very "busy". Changes of season and schedule can sometimes allow for what appears to be a normal reason for a transition like this.

What we did not do and I wish we had was to state this is what we are going to do, we would love your support but we will go ahead regardless. That day may still come… we've taken a bit of an easy approach of less time with the person. We have also stood up to our views in many occasions to the extent that this person has stopped making as many passive aggressive "comments".

In my experience, you need to seperate enough to be able to put your child's plans first… as hard as that is.

Issues of Secrecy:
Many parents, including myself attempt to operate
in the veil of secrecy but I think it is often easier to be open about your situation. Looking back, if I could do it all again I would be more open from the beginning.

I have two veins of thought for you, the first is why secrecy is not always the best option and the second is some ideas on how to explain therapists etc when operating under secrecy:

I have tried both ways and have found that being open is easier. While we sometimes think that we are keeping it secret, often our child's behavior leads those around us to conclude there is "something" not quite right. In my experience this is more damaging to my child's social life. When I've been open and discussed my child's life, I have found that many parents have been very supportive. The more parents of my child's peers have learned about therapy and about how great my child is doing, the more they have rallied around us. At our first church, we were not open about our diagnosis, as a result, no one there supported us or understood what was going on in our lives. When we changed churches, I made a split second decision to just say it… what a weight off my shoulders. I had said it – my child has autism. The support of our church has been incredible. We are welcomed at sunday school, because we took the time to explain our child's needs and to introduce our sunday school teacher to our therapists and explain why it is essential that they come (btw, when doing this it really helps to explain how one's child's needs might overburden the teacher, making the therapists attendance beneficial to the teacher). When our family was profiled in a CBC documentary and when the SCC decision came down the next day, our church was amazing. The members of our church are praying for us and for all of the families on this board who are working for the rights of our children. This type of support was so welcomed and appreciated by us in such a dark time. I've also found that so much of my spirtuality relates to my life circumstances and when not able to talk about those I am not able to talk about my spirtual struggles or my needs. At my son's school, being open has meant parents who have rallied around my son and encouraged their children to include him. The more we've opened up, the more our son's global village has supported him.

Tips on secrecy:
-therapists can be explained as babysitter/nannies/friends of the family/aunties. This is not to say that they are ANY of these things! If you are going to use these types of labels, discuss why with your team and let them know that it is a label only, not that you think they are these things.

-I am often shocked at how nosey people are so be prepared to answer questions as to why you have a nanny, or why that person might be accompanying them to an activity if you are there.

-one of the easiest catch all phrases is to say that your child has a slight language delay and that you have a student/nanny/whatever you want to call them who is working on language through play. For some reason people are very accepting of this description and often jump in with comments such as "I have several friends whose children are language delayed" etc. This type of comment works well at preschool age, because there are usually several kids in a preschool class who are seeing an SLP. It doesn't fly as well with an older child.

-for playdates, you can tell parents ahead of time that there will be a therapist there by saying, our son is struggling with language and our speech path thought that some play dates with peers would be really great so we've hired an energetic student who loves to play and is a TONNE of fun to come over a few times a week and she/he will be here when your child comes to play. It often helps for the other parents to meet your wonderful student and sometimes to even stay for coffee so that they feel comfortable.

But ultimately, the more you explain who your child really is, the easier it will be for you. Keeping the secrets is a lot of work and I often felt very dishonest.

When people learn about our kids, their programs and how effective they are as well as the struggles we face, they are often supportive. If we want to build a base of Canadians who will help us in our fight towards we equality, we have to introduce them to our children.

Hope that helps!

[Nancy Walton]

Hi Tony, if possible, please try to bring your wife and any other family members to the next South Fraser ASBC meeting. Our speaker will be Dr. Glen Davies, who will talk about the prognosis with and without ABA. I strongly recommend this talk for parents of autistic children of all ages and of all levels of autism.

This meeting is open to parents, teachers, teacher's aides, social workers, SLP's, doctors….

The meeting is January 13, 7-9pm
15306 24th Ave
South Surrey

Give yourself lots of time to get there if you are coming from Hwy 1 (half an hour just to cross Surrey)

Look for a brand new, large, two story building with lots of ceder wood on the exterior.

Nancy Walton

[Super Dad]

I need advice from parents who have been in a similar situation: As I try to run a treatment program for my son, my family is working against me every step of the way. For each hour that I spend helping my son, I spend ten hours fighting with the family.

One problem is that, despite the diagnosis from Sunny Hill several months ago, the family still insists the kid is “just a little delayed.” They believe the various public and private service providers who tell them exactly what they want to hear. The preschool teacher says his behavioural problems are normal for his age and she guarantees she’ll fix everything within a few months. One SLP charged me thousands of dollars for time spent telling the family that “the kid is just under-stimulated because daddy doesn’t play with him.” (That was a great way for the SLP to discredit me after I started asking difficult questions about her knowledge of autism. However I allowed this to continue for a while because the family was in pain and the denial seemed more effective than any counseling.)

A related problem is the family’s focus on secrecy above all else. The family says since the kid will be okay in no time, our first priority should be to protect him from ridicule. I have found myself cut off from any social or spiritual support, because I cannot discuss the one thing that I care about with anyone I know. I have to learn to lie in order to explain the kid’s behaviour in front of friends and relatives. When I have an hour to read some literature on autism, I spend the hour looking for it in the darkest corners of the house. Scheduling of therapy is a lot more difficult when it has to be done in complete secrecy. My biggest concern right now is that I am not allowed to put a therapist into the preschool, because “Tommy will tell his mom and she’ll tell all the neighbours.”

This leads to the issue of ignorance. To explain the need for therapy during preschool hours, I am desperately trying to explain the 10 hours versus 40 hours difference in the Lovaas experiment. I am quite resentful that after all this time I still have to convince my own family that 15 hours/week is not enough. I try to get the family to attend FEAT/ASBC meetings, but they say I should spend the time playing with my son (so that I would see how little I had to worry about). I am finding it more and more difficult to talk to my family, as the distance between our levels of understanding grows wider and wider. This is putting a huge strain on my marriage.

If anyone has previously faced any of the above problems, please share some advice.

Tony

[Mike & Jean]

We wish all our F.E.A.T. friends and families the joy and peace of Christmastime and renewed hope and faith in 2005!

Warmest Regards from,
The Lewis Family

[Susan Burns]

teen males' basketball anyone? James is excelling…….to his mother's enormous pleasure…….Monday's west Richmond……Tues…..Marpole……Surrey [Wed. or Thurs. ]and Sat.Coquitlam Susan
spbpt2002@yahoo.ca

[David Chan]

Best of the season to everyone,

We just got home from Mr. P's X'mas Band concert. Boy was it
tense or what. As it were, he started with everybody else, and
he finished with everyone else. For those of you that didn't take
band, this is VERY VERY important. Good old Mr. P persisted,
and with mom's help practicing, he sounded…..well, he
sounded. Actually, he sounded pretty good, and all the parents
there thought he was pretty cool. And yes they know that our
boy is on the team. There is no denying it.

Which brings me to this point. Our kid is 12 going on 13, in
many situations he is independent. Tonite, his therapist sat
next to him, reminded him to read the music. For the most part
it was ALL him.

You don't stop ABA because he's an older kid. He making gains
everyday. We just keep adding expectations to the list,
remember, no guts, no glory.

Indistingushable from his peers, sometimes, not all the time. As
we left the concert at school, one of the his friends moms asked
if P's doing anyting over the holidays because her son would like
to hang out. That's pretty indistingushable I guess.

After the concert we went out for pizza. When we came out to
go to the car, Mr. P commented that the lights looked really
great on the store in the mall….unprompted, spontaneous.

Wow. What about this Lovaas ABA stuff………

Merry X'mas to all

Dave
Mr. P's Dad

P.S. Mr. P is in the X'mas play tomorrow. Well here we go again
I'll let you guys know what happens tomorrow, stay tuned

[Deleted User]

FEAT of BC is pleased to announce registration is available for the Intermediate workshop in Vancouver.

Date: January 15

Time: 9:00 – 5:00

Place: Douglas College.

Prerequisite: a minimum of 3 months experience and attendence at either a FEAT BC basic workshop of that of a Qualified Lovaas Consultant. (This is to ensure that the audience is at a similar level so that time is not spent reviewing basic information). Parents are always welcome regardless of expeience level.

Registration forms can be downloaded at:
https://www.featbc.org/downloads/ibtw.pdf

In order to register you must list your experience level as well as where you have taken your basic workshop.

Please note that the intermediate workshop fills quickly. Space is extremely limited to allow us to provide a high amount of hands on practice with individualized feedback from the workshop instructors.

[Mike & Jean]

Attention all parents and professionals working with people with autism. F.E.A.T. of B.C. in partnership with the Autism Society of B.C. and the Association for Science in Autism Treatment – A.S.A.T. are pleased to announce a one day workshop to be held on Saturday, March 12, 2005.

Circle your calendars and book the day because this is going to be the first in a series of "must attend" workshops sponsored jointly by these three organizations.

Workshop title is: "Autism – What's Science got to do with it?" – integrating science-based interventions, including speech pathology into intensive behavioural treatment programs.

The presenters:

Sabrina Freeman Ph.D, a sociologist and the author of the popular book, "Teach Me Language", has been a tireless advocate for the rights of children with autism to science-based treatment since 1996. She founded the first autism advocacy movement in Canada – Families for Early Autism Treatment of B.C. – dedicated to providing universal access to medically necessary health care for children with autism. Dr. Freeman's intimate involvement in the litigation against the Government of British Columbia to secure autism treatment under Medicare (Auton vs. British Columbia), and her formal knowledge of the scientific method, give her a unique window on the latest chapter in the long running autism wars. She provides parents and professionals essential information on how to evaluate treatments and how to protect their children from harm. She sends a powerful message about the search for truth, and how that search is being distorted and corrupted by handsomely compensated "experts". Dr. Freeman's latest book, "Science for Sale in the Autism Wars" is the real-world story of a landmark legal battle between children with autism versus government and academic mercenaries. This book and it's author is a "front row seat" to the difficult struggle to provide children with medically necessary autism treatment.

Bobby Newman, Ph.D, BCBA
Dr. Bobby Newman is a Board Certified Behaviour Analyst and licensed psychologist. He is the Vice President and President-Elect of the Association for Science in Autism Treatment. He is a Past-President of the New York State Association for Behaviour Analysis and is on the adjunct faculty of Queens College. Bobby is the Director of Training and Research at the Association in the Metro area for Autistic Citizens (AMAC), and Supervising Psychologist for Effective Interventions Inc. His books include, Behaviorspeak, When Everybody Cares:Case Studies of ABA with People with Autism, Words From Those Who Care, Graduated Applied Behaviour Analysis, No Virtue in Accident and The Reluctant Alliance. He has consulted and designed programs for children and adults diagnosed with autistic-spectrum disorders all over the United States, Canada, Ireland and England. Dr. Newman has been honored for his work by several parents groups. This will be his second presentation in Vancouver. His presentation will be on the science which differentiates ABA from other therapies; the science which makes ABA uniquely effective treatment for autism.

Joanne E. Gerenser, MA, CCC-SLP
Joanne Gerenser is the Executive Director of the Eden 2 Programs in Staten Island, New York, an educational, residential and adult services program for individuals with autism and related disorders. Ms. Gerenser is a Licensed Speech-Language Pathologist. She holds a Master's Degree in Speech and Hearing Sciences and Clinical Certificate of Competency from the American Speech and Hearing Association. Ms. Gerenser lectures internationally on issues in autism and developmental disabilities. Her presentation will be: " How to Integrate Speech and Language Pathology with ABA to increase language in children with autism." Ms. Gerenser is a straight forward and dynamic presenter. Her focus is to provide speech pathologists with practical, applicable information to help children in ABA programs to increase their language.

What is ASAT? (Association for Science in Autism Treatment)

The Association for Science in Autism Treatment (ASAT) is a national not-for-profit organization formed by a group of parents and professionals. ASAT's mission is to disseminate accurate, scientifically sound information about autism and treatments for autism, and to improve access to effective, science-based treatments for all people with autism regardless of age, severity of condition, income or place of residence. The ASAT Headquarters is in Great Neck, New York. Check out the high calibre of expertise who make up their board of directors and advisory board.

Why Should You Attend This Workshop?
Until recently autism was considered to be lifelong and severely incapacitating. However, scientific investigation has demonstrated that, with early, effective and validated intervention, individuals with autism can make significant improvements and lead lives filled with hope, promise and purpose. Some, in fact, can achieve normal social and intellectual functioning. Despite these profound advances, parents and professionals still experience great difficulty in obtaining effective treatment for people with autism. Controversy over what constitutes effective treatment and confusion surrounding the distinction between science and psuedo-science all contribute to this difficulty. The aim of this workshop is to offer clearly articulated, science-based, state-of-the-art information on behavioural research in autism treatment and provide vital information on scientically validated best practices in the treatment of autism.

Who Should Attend this Workshop?

This workshop is designed for parents, professionals including all speech language pathologists who work with children with autism, educators and anyone who has an interest in scientifically sound information about autism and effective intervention. ***speech pathologists can receive CEU credits for attendance.

In closing – This is a must-see workshop for everyone and anyone involved in autism. Once again, F.E.A.T. of B.C. presents this exceptionally high quality workshop at the most affordable price possible:

$75.00 for parents and non-professionals
$125.00 for professionals

March 12, 2005
Mulgrave School, West Vancouver, B.C.

As previously stated, this is the first of on-going, high calibre, state-of-the-art, science-based workshops which will provide parents and professionals with vital information on behavioural research and scientifically validated best practices in the treatment of autism – presented
by recognized leaders in the field.

The collaborative efforts of F.E.A.T. of B.C., The Autism Society of B.C. and the Association of Science in Autism Treatment will provide parents with the knowledge not only necessary to help their children, but to protect them from harm.

Registration information will be available by Jan. 4, 2005. Registration will be done by the Autism Society of B.C.

If you require information regarding this workshop prior to Jan. 4, 2005, please email me at jean.lewis@telus.net

Regards,
Jean Lewis,
Director, F.E.A.T. of B.C.

[Deleted User]

FEAT of BC intermediate workshop in Vancouver

Mark your calendars!

We are just confirming location details but barring unforseen circumstances, we will be teaching an intermediate workshop in Vancouver on January 15th. Registration forms will be posted shortly.

This workshop will not be offered again for at least 4 months, possibly longer and registration is limited to allow for one on one attention and hands on practice.

Details to follow soon

[David Chan]

Attention all FEAT parents in Richmond

Please contact me immediately at

604-275-4309

Dave

[Author]

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