[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

[Sabrina Freeman]

My comments regard the recent post by anonymous recommending
the Picture Exchange Communication System (PECS) rather than signing for a
deaf autistic child.

In my opinion, it is ill advised to recommend one method
over another as a matter of general policy. When deciding upon the type of
communication system a child should use, the major question that needs to be
asked is this: into which group in society is the child going to be mainstreamed?

If the child is deaf, and the parents are targeting mainstreaming the child into
the deaf culture, then sign is presumably the best option.
If the child is not going to be mainstreamed with deaf children, then other
augmentative systems such as PECS or a simple visual system with icons or text
may be more appropriate. Again, keep in mind we are talking about a child
who is deaf and autistic. If one does not consider the mainstreaming
opportunities for the child, then we are selling this child short which is a crime as far as I'm concerned. Many people will argue that the child will not be able to communicate with the hearing community using sign. This is an argument used often when deaf children are taught to sign rather than read lips. However, this attitude minimizes the rich alternative
that the deaf community offers deaf children.

I am compelled to address the second issue raised by anonymous: PECS
and paired vocalizations. Anonymous claims that the pairing of PECS with
vocalization can lead to complete oral communication. This is a VERY
contentious area and more research needs to be done in this field before
PECS can be recommended on a wholesale basic to pre-verbal children.

There are several points that need to be made regarding PECS
and paired vocalizations:
1. children with autism typically over-select. Simply put, our children
have a tendency to concentrate on a specific aspect of what is being
presented to them. Many people describe this by saying "they can't see the
forest for the trees". In other words, they are over selecting to the point
where they can't see the big picture. This is highly problematic for pairing
PECS with a verbal since our kids will concentrate (most likely) on the
visual (the PECS) and not on the verbal.
2. One of the goals of discrete trial training (DTT) is to decrease or
eliminate the over-selectivity problem. Therefore, children who respond well
to DTT, may learn well when pairing a visual system with a vocalization;
however, a large number of those children may not need an icon system since
they have responded well to the verbal programs using DTT. For those who do
need an icon system, the PECS system may be appropriate.
3. Unfortunately, many of the children who are not progressing quickly with
their expressive programs, may also have difficulties with over-selection.
Therefore, those children who may need a visual system will not benefit from
the paired vocalizations.

As the above discussion suggests, this issue is far more complex than
anonymous has presented. I strongly recommend parents speak with their
consultant regarding when — and if — a visual system should be introduced.

Sabrina Freeman
Miki's mom

[Jeff and Robin]

Dear Anonymous, This is directed to the individual who"highly recommends" CBI consultants. We are a family who was involved with CBI consultants approximately seven years ago. Their mandate was to develop behavioural and teaching strategies for our non-verbal child with autism. The CBI consultant spent a total of 22 hours in our home over a two month period and many more hours writing up a program which did not involve data collection requisite to determining how goals could be established and met. Most importantly, the CBI consultant never worked directly with our child. It is interesting that the anonymous poster does not even sign his or her name leading me to believe this post is a self serving advertisement by a CBI employee. To the previous anonymous poster who is seeking a Lovaas trained therapist who can sign, please contact me privately and I can put you in touch with an individual who should be able to assist this family. Robin Gelfer

[Deleted User]

Dear Anonymous,

Regarding the family with the hearing impaired child with Autism. I've recently taken some graduate Special Education courses on Autism that dealt with this issue. Every child is an individual, but to relate this issue to another…A family of a deaf Autistic child went through years of struggling to teach their child to communicate through sign only to realize the extreme transcience of sign language. Also, they were frustrated to find out the few words learned by their child could only be understood by them. They decided to try PECS (picture exchange communication). This may not be the option for this child, but it is worth investigating. Pictures given or pointed to to express wants/ needs that are universally understood. Once this is mastered a vocalization can be paired with the picture (if possible) and for some children this can lead to completely oral communication. PECS could also solve the lack of sign trained therapists problem. There was a dramatic change with this child, they used CBI consulting in Vancouver. I highly reccommend them.
I hope this helps a bit

[David Bridges]

I am interested in finding caregivers/babysitters for overnight trips and casual work. I have a 6 yr-old son with Autism and a non-Autistic 10 yr-old daughter. Live in West Vancouver, in a pleasant neighbourhood with lots of parks and amenities. Two cute dogs and a cat. I pay well. Must be non-smoking, prefer non-drinking, extremely kind and responsible, as well as patient. Use of truck while caregiving overnight. Must have terrific references.
Call Dave Bridges at 913-3343

[Deleted User]

I am seeking information for a Coquitlam family who have a 5 year old boy who has autism as a main presenting feature, but is also hearing impaired. Any attempts at communication are done by sign. I am trying to gather some information for them re. What consultants can put together an A.B.A. program using sign language, AND, JUST AS IMPORTANTLY,does anyone know of any Therapists who can deliver the program in sign to the child?Without these two things occuring,it would be very difficult to set up an A.B.A. program. Please give it some thought and email post any and all suggestions/information you have as soon as you can. Thanks!

[David Chan]

There is a new A.B.A. consulting firm. This firm
was refered to us by C.E.E. (center for Early
Education). The firm is called

Autism Spectrum Consultants
contact:
Dawn Enoch
(858) 456-2272

Because they are a new start up company.
Currently there is no waiting list.

Please note, that there are no local families
using this firm. Please check referneces
carefully. If anyone does retain them; F.E.A.T.
would appreciate any feedback and
experinece with them.

[Linda Cucek]

To- Gary Ferrell-Collins
BC Liberal Finace Critic
From: Linda Cucek
Re: Formal Complaint regarding Insufficient Support

Dear Mr. Gary Ferrel-Collins:

We as James Cucek’s parents are writing to you in regards to insufficient support.

Our son James Cucek, has a multiple diagnosis of Autism and Schizophrenia & psychosis.
It has been at least seven weeks since James has been discharged from Children’s Hospital and there is still no youth care worker working with him, yesterday Katherine Urquhart, came to visit me with Lyn Taylor Scott, Coordinator of Respite Services, Katherine told me I would be getting ten hours a week for James a Youth Care worker. Our family has been in need of a Youth Care worker for sometime.

The Laurel Group has been involved since November, we feel that ten hours a month that is allocated to each client, which includes telephone calls, meetings, report writing and travel time is not enough for a child such as our son James which has multiple diagnosis and she does not address our needy child .
James requires a skilled consultant who probably spends 30 hours the first month to six weeks observing him. This has not happened to our son James. This consultant left on a month holiday, just as James was released from the hospital and at this time we needed her the most, and no one else was able to offer back-up when she left.
We have had no training. We need to be taught exactly how to deal with James’ Autism and other diagnosis. We are also worried about the effects of the medications on James behavior. We will need a great deal of coaching in order to support James to become independent. We would feel more comfortable with CBI Behavior consultant.
James, was born in 1984 – I have had no supports since late last year when our family began to become very stressed out on how to deal with James, I feel its time we get the proper supports in place.

Best Regards,
Stan & Linda Cucek

PS I listened to a talk show you were on – you mentioned that the funds in excess of seven hundred million dollars were initially "ear marked", for health. The former minister of finance said it was not approved and therefore never released – over one hundred million dollars was set aside for disability children is this why my son James and other children are not getting the proper support? Please email me back I would like your answers to my questions and suggestions on what to do? The Mayor of Port Moody, wrote a letter to Mike Fernsworth, Minister of Health – because I have no supports in place for James and he never replied back. Also, I read in the newspaper a disability person with Schizophrenia was shot because he was on the streets and didn't take his medications – I feel there is no proper supports for disability people at all. Something has to be done about this.
I WOULD LIKE TO EXPLORE A CLASS ACTION LAWSUIT.

MY SON JAMES IS 15 YEARS OLD, I BELIEVE LOVAAS
WAS AVAILABLE WHEN JAMES WAS YOUNGER BUT NOT OFFERED TO
OLDER CHILDREN AT THIS TIME WITH AUTISM.

PLEASE GET IN TOUCH WITH ME IF YOU HAVE A TEENAGER
THAT HAS AUTISM SO WE CAN GO IN AS A GROUP TO EXPLORE A CLASS
ACTION LAWSUIT FOR LOVAAS.

MY PHONE NUMBER–936-3635 LINDA CUCEK
Please tell me what you think about this? F.e.a.t. is suiing for the younger children regarding Lovaas treatment, but also the older children need this treatment.

[David Bridges]

To Sharon Baxter:

Sharon, you said I would be able to download a registration form for the next ABA workshop on May 13/2000. Forgive my bad memory, but could you tell me where I can find this? Thanks.
Dave Bridges (davidbridges@home.com)

[Deleted User]

Shannon Rodrigue, An Autism Consultant From the
Centre for Early Eduacation will be interviewed on
The Early Edition on CBC Radio, At 7:00am
April 14th,2000. Please try and tune in for more information on Effective Autism treatment.

[Linda Cucek]

I WOULD LIKE TO EXPLORE A CLASS ACTION LAWSUIT.

MY SON JAMES IS 15 YEARS OLD, I BELIEVE LOUVAAS
WAS AVAILABLE WHEN JAMES WAS YOUNGER BUT NOT OFFERED TO PARENTS AT THIS TIME WITH AUTISTIC CHILDREN.

PLEASE GET IN TOUCH WITH ME IF YOU HAVE A TEENAGER
THAT HAS AUTISM SO WE CAN GO IN A GROUP TO EXPLORE A CLASS ACTION LAWSUIT FOR LOUVAAS.

MY PHONE NUMBER–936-3635 LINDA CUCEK

[Author]

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