[FEAT BC Admin]

This area is for discussions in general topics.

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[Deleted User]

Happy New year everyone! Registration is once again picking up for FEAT of BC's upcoming intermediate workshop. Please remember that we do not offer this workshop as regularly as our basic workshop so if you would like to attend, please do try to attend this offering. It will not be offerred again until May at the earliest, possibly not until next fall.

Registration goes quickly for this workshop and space is very limited.

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:
http://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.

thanks, see you there!

[Laurie Guerra]

Hey Tony,

You are SOOOOO not alone.

age 0-2 normal son

age 2-4 totally abnormal son, 2 year wait list till Sunnyhill assessment.

age 4-6 family going nuts, son completely out of control, 3 assessments at Sunnyhill, diagnosis AUTISM, family now completely out of control too!

age 6-6.5 contacted ASBC- no help, attended ASBC meeting with Dr. Glen Davies, heard about ABA, saw a recoverred child, started ABA program.

age 6-9 did ABA program, 1 year marriage counselling

age 9-present (still 9)-child recoverred, marriage recoverred.

Try to attend Nancy's next meeting with Dr. Glen Davies. I will be there too as a guest speaker. Don't give up, it's worth the fight!

Wes's mom

[Alan Campbell]

Hi All;

We are (finally) getting our ABA program together, and are looking for some specific items.

Action Cards & Blocks (multiple shapes and sizes).
If anyone out there knows where we can purchase these let us know, or if you have any for sale please send us an e-mail.

We would be interested in any other materials all you pros out there know we're going to need. Our daughter is 4…….thanks for any help.

Alan & Cindy Campbell
e-mail alanandcindy@shaw.ca

[Jenny Obando]

oops sorry here is the address;
http://rsaffran.tripod.com/consultants.htm

Jen

[Jenny Obando]

Hello again Tony, I have found a website with information on consultants and counsellors as well, I don't know if they are any good. They are here in BC for marriage consulling and the website also have info on ABA consultants.

Good luck
Jen

[Super Dad]

Dear Nancy, Michelle, Julia, Jen, Tamara, Lis and Lisa: Thank you so much for your advice and support. I never really know what to say when you spend so much time helping me and I have nothing to give in return.

I am seriously considering following Jen’s example of getting some marriage counseling. (I’ve been hesitant in the past because most counselors don’t know the first thing about autism and would therefore have difficulty understanding my point of view. I am quite tired, or even afraid, of talking to people with no knowledge of autism.) The extended family is not the biggest problem, because I can shove them off more forcefully since they cannot divorce me. It was my wife who picked a fight tonight when I said I wanted to attend the next South Fraser ASBC meeting, and I wasn’t even asking her to attend.

I am quite envious (for myself as well as my son) when I see Michelle/Justin or Tamara/Mike work together as a couple to save their children. A common goal is a blessing for a marriage, and it’s nice to see a couple make autism a way to strengthen (rather than break up) their relationship.

Tony

[Lis Louwrier]

Hello Tony

I am writing to you because I read your post and felt so much sadness and anger for you.

The road we travel when are our children are diagnosed with autism is hard enough but we don't need extra detours along the way. My husband and I encountered these detours when we started our son's program. We were polite for the sake of others when we did not have to. I am not sure how much our son was affected by our unfortunate politeness but we soon realized that it had to stop. Anyone who makes a comment about how we do things has the luxury of walking away. But we parents stay and we fight for our children. The decision handed down by the Supreme Court cemented in my mind that my husband and I cannot wait or trust so easily that others will do what is right for our son. We have been blessed that many families before have paved the way to make the fight somewhat easier but it is not over.

You are lucky if you have meetings you can attend on the mainland. Please go to them. Meet others who will make you feel proud of what you are doing. You deserve it. When we started, we had moved to a new country, found out our child had autism, had to find a house and start a program. The so called professionals gave us no unbiased info on Lovaas treatment and I was even told that ABA was no fun and that marriages split up because of it. On top of that my husband was travelling many hours and we did not know anyone. To our fortune my husband and I met 2 FEAT families here on the island and they, along with my son's hard-working therapists and have been our steadfast and constant companions. We created something from nothing, a family of our own liking so to speak and closed the doors on those who had no interest in supporting our decision. These individuals have helped us on many levels and pushed us forward on days when we thought it was too hard. For that I am eternally grateful and my son has a good life for it. 20 months into our program I am rejoicing for the choice we made and I don't hide anymore. I am honest about Lovaas treatment as the only scientifically-proven treatment and I explain what we do to those that are genuinely interested. Those who interfere thinking that they know better are simply told no thanks. For our son, time is precious and we can ill-afford the consequences of politeness anymore.

I wish you only good things and I hope you find your way through it all.

Lis
Ryan's Mom 4-1/2 years old.

[Deleted User]

Hey Tony —

I completely sympathize with your situation, as we were “there” .. until I decided to stop being “nice” and apply the ABA that I had learned to help my son on my circle of family and friends. Guidelines were pretty clear, especially for houseguests and family in the early years: therapy time is absolutely SACRED, absolutely nothing competes or interrupts it. Those that got in the way were asked to leave in an open, matter of fact way, with out exception. We ended up putting one prima donna on a early flight home at our expense do to a non-compliance issue, and a set of grandparents were moved to a B&B in another instance. Now, we are **absolutely clear** prior to any visit about what our schedule is (activities, therapy time, consults, etc.) so that folks know that they are welcome so long as they can be independent (rent a car and drive yourself around) and supportive (respecting therapy time means that the playroom is closed at this time and the rest of the house is doing “quiet activities”, or out).

For a while we were left completely alone, which wasn’t really that bad as we were deep into figuring things out, making program materials, etc.

For Xmas and birthdays we requested therapy materials, rather than “stim” toys, and openly returned anything that wasn’t on the list and bought the needed supplies. Many were insulted at first, but they came around as we made progress and sent short video footage of W. using their materials in session as a thank you. “Thank You Nana and Paco for the great “Sequencing” card pack … I have now learned how to tell and retell a short story. Next time you call I can tell you a story. I love you W.”

We also sent copies of Work in Progress and the resource materials page from Behavioural Intervention for Young Children with Autism so that relatives could make good choices and know/anticipate what kinds of materials we were looking for. They also started to become familiar with programming (ie we could say “we’re starting an occupations program” and picture cards, educational videos, dress ups, etc would start arriving.) which was really great!

This past Xmas we got a geoSafari globe to start working on geography and tons of older board games (like Blokus, Cranium, Spill & Spell, and Malarky). Any video games we received were all sports related (absolutely NO immersive environments) and provide great video modeling for sports in a normal setting (hockey, NBA, NFL) and something cool to **play with their friends**. And we also got some contributions towards the therapy program.

Again, ANYONE who does not support your dream for your child and you & the hard work that you need to do to get him there needs to be “put on hold”. This is the only way that you will arrive at your best possible outcome. Your responsibility and priority is to the child who needs your help, not to the adults who can’t understand.

Rebuilding some of those relationships may take years, even decades, to repair but they are part of the road traveled. When I look at my son laughing, playing with friends and complaining that he isn’t doing enough play dates, sleepovers or playing enough hockey … It’s been completely worth it.

Somehow I don’t think anyone, injured family or friends included, will ever say “You should never have done Lovaas-ABA, … he was perfectly fine in the corner, off alone in his own world, incapable of speech, social interaction or connecting with others. Tantrums and freakouts are normal and he would have eventually grown out of it, maybe. He was absolutely OK a shell of a person… you should have left him where he was.”. No, now they are organizing film screenings and fundraising projects in Winnipeg, and signing petitions in Montreal, Aurora, Oakville and Flin Flon.

I think in the end all will be forgiven.

So, draw your line, pick your focus and get going … you have some hard work ahead of you and your son needs you to get busy NOW!

Tons of warm wishes to carry you and your family through 2005,

Tamara

[Jenny Obando]

Hi tony,I feel your pain,well I should say I have lived your pain.

When my son was diagnosed my husband was not on board at all. I believe that when a diagnosis is giving people go through a grieving process some go through it faster than others, my way of dealing with it was attacking the problem at hand, while my husband's was attacking me.I made a decition early on, he either get on board or get out of the way because I was not going to sacrifice my child for his inability to coupe and as hard as that was, we manage to hold things together by attending counselling to help both of us get on the same page. Now he is one of my greatest supporters and allies, it took a lot of work,time and patience as well as some ultimatums.

what exactly do your family's perception of autism is ? I though I knew what autism was, I though an autistic person was someone with some sort of mental retardation, rocking and hand flapping in a corner and since my son did not do ALL of those things I immediately ruled autism out.

One thing you can try to do is set your boundaries. We finally had to do that this summer with a gradparent who was causing our son to regress and have problem behaviors; her excuse when confronted was: " I don't know anything about autism! Our son was diagnose 4 years ago,so her excuse was not acceptable for us

Although you can not force someone to learn about autism or the therapy you as a parent have chosen to do for your son you have every right to demand that they respect your choices and decisions, just like you would for any other choice in your life. I finally learned to exercise my right as a parent his past summer.

We decided to no longer let grandparents,affect the health and well being of our sons or threaten the integrity of our famly. We sat them down and presented a unified family front and some clear boundaries.If the grandparents do not respect these boundaries they are ask to leave our house immediately,believe me they got the point rather quickly.
Remember they don't have to agree,like or support your decisions however they have to respect them.

AS far as secrecy I agree with Michelle, is so much easier to offer a reason for an aid to be with your child, since my son is now pretty much finish his therapy and unditinguisable from his peers , we say that he has a speech and language delay,although earlier on we did talked to some parents and told them about my son's autism.

One way you might get you point across is by educating your family. There are videos from the autism society that might be of help.So that the information is coming from a neutral source other than yourself.

I hope this gives you hope and perhaps some ideas as to how to tackle your dilemma.

Most importantly, you are not alone.

Warmly

Jen

[David Chan]

Dear Tony,

I too was very saddened by the onerous difficulties you are now
facing. I think the suggestions made by both Nancy and
Michelle are excellent. I would like to point out that you are not
alone. As regretful as I feel while saying this, a child with autism
is first of all a child who needs a tremendous amount of love,
support, understanding, and intensive intervention; this same
child also generates a tremendous amount of controversy and
negative politics, including those within families. All of a
sudden, everyone has an opinion, and they all feel free to share
it with you!! In some extended families, certain members do
not understand autism, the extreme necessity for Lovaas-based
intervention, and the need for a much more structured parenting
style—and they never will! If your family is in denial, you might
want to book another appointment with a pediatrician or clinical
psychologist to have your son assessed again. Hopefully if yet
another clinician verifies the diagnosis, your family members will
be more inclined to believe it.

Tony, if you are in an extended family situation, you may need
to entertain the idea of living in a more nuclear family set-up. I
completely agree with Michelle that if you can’t convert someone
to your correct way of thinking and that person or persons is
sabotaging your efforts, it’s imperative to drastically reduce time
spent with them. Otherwise you’re fighting a two-front war (or
worse!)

I was also very concerned about the SLP who tried to pin your
child’s problems on yourself. Please learn to trust the “gut
feeling” that you have that an individual, no matter how
enormously qualified they may seem, may be a toxic influence in
the situation, and don’t feel any regret in letting them go. After
all, you’re signing the cheques. A truly well-qualified
professional will not “badmouth” or “gang up” on family
members. He or she will diplomatically address areas of concern
in a way that’s positive for everyone.

Lastly, take care of yourself. Rent a funny movie, read a
frivolous book, or go for a walk. Give yourself a little time away
from your very serious life. Attend one of the monthly FEAT
meetings in West Van, so you can connect with other families
running programs. Hopefully you can find someone to chat with
about autism concerns and running a Lovaas program. In this
way you’ll feel a bit more supported.

Tony, I hope this is helpful. Believe me , you are not alone.
Many, many people go through this but just don’t have the
comfort level to talk about it. Hang in there.

Julia
Mom of Mr. P

P.S. Now it’s time to acknowledge the many relatives, friends,
and supporters of children with autism who HAVE shown
tremendous dedication to these kids and their parents by
attending court hearings, political demonstrations, fund
raisers, and the like. You’ve all earned a special place in
heaven.

[Author]

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