[Deleted User]

Dear Anon,
I am writing this in regards to the last post on this chat board.
I also agree that the path forward cannot be paved with misinformation and exaggeration, but it is indisputable that our children are discriminated against..
Please remember that the government did not suggest that we get an IEII program for our children – others before us fought for that. I, and I am sure everyone else is very thankful for the $1667.00 we receive every month – even though it is only half of the cost our fine government is supposed to be paying. That would be half the treatment that they would be giving my child. If your child had cancer would you settle and or be content with half the treatment? In the words of Michael Lewis “If our children had cancer we would not be having this conversation”. I for one am not satisfied with just “SOMETHING”, especially when some families have had to put their homes up for sale to pay for their child and sometimes childrens medical treatment.
Those that went before us did not get us where we are so far by “working for improvements”. They fought for them in court at a great financial burden.
You said that things are slowly but surely improving and that families have more viable options to pursue, but you failed to list these things.
You also mentioned that we should probably be a tad more patient …in regards to what is before the courts, yes, we will have to sit and wait… but in regards to anything else, we all know that waiting for change has not worked and that it has only hurt our childrens success.
I for one will not “accept what I cannot change” because it’s wrong. This is something that can and will be changed because it is a fundamental right of all autistic children.
Until then, I will for fight for the rights of my child and when this fine government pays it’s bills, I will give credit where it is due.

[Deleted User]

Deb –
I am truly sorry if you felt offended or upset by the opinions I expressed. As I tried to state, they were not directed personally at you or anyone else. I neither stated nor suggested that anyone was not entitled to their feelings. On the contrary, I agree with you that this is a very convenient and appropriate forum for people to express their feelings, and look for support. Some very excellent and relevant discussions have resulted from it. I am not at all angry at anyone, just concerned about the effects of misinformation. That is what I said.

I do not like posting anonymously; in fact I feel horrible every time I feel the need to do so. But I find it preferable to suffering derision from those who may disagree with my opinion, or who are offended by it even though I have tried to be very careful to avoid causing offence. Unfortunately, faceless communication can be easily misinterpreted.

I too am a parent of an autistic child. I not only know how you feel, I feel the same way: sad, angry, frustrated, alone. To deny the feelings of you or anyone else would be to deny my own feelings. I'd rather cut off my arm. We may differ in our opinions, but we are all in this together.

– Anon again

[Deleted User]

I am writing this because I am concerned about a sentiment that is becoming very prevalent on this chat board, and is propagated by comments that I feel are negatively misleading. Comments I am sure do not represent the sentiments of all. Here is a quote, singled out only because it is recent and not because I'm trying to single out the author:

"It seems the discrimination of our Autistic hildren has hit a new low and has crossed all boundaries."

I am in no way affiliated with any government or political party, but there is one thing I do know. Until our current provincial government started the IEII program a year ago — with all its flaws and imperfections — there was NOTHING for ABA funding. Now there is SOMETHING. That something is not enough for some, but it is better than nothing. For my own part I can plainly say this: It has saved my son.

This does of course not mean that we should accept what is given and quietly go away. Of course not; we must continue working for improvements. But it is important that we give credit where it is due. Our current situation is better than it was 18 months ago (even for school-age children, although barely). When people make comments like "we've hit a new low" when in fact things are slowly but surely improving — such changes are never fast enough for those waiting for them — it does nothing to assist the cause. On the contrary I believe such comments, because they are emotional but not factual, actually undermine the credibility of those fighting to make real gains. In the same way that it is so painful to listen to politicians after they have fallen from grace and been voted out, no matter how valid their current point may be: because they have lost their credibility.

All parents of autistic children face a trying and frustrating journey, some more than others. It is an emotional burden, and for many an unbearable financial one. We all agree that we would like more assistance, and we realize that in order to get it we need to fight for it.

But I do not believe that the path forward can be paved with misinformation or exaggeration. The truth is cruel enough that it needs no embellishment.

Today there is more funding for autism treatment, doctors are better informed about autism, people in general know more about autism, and families have more viable options to pursue than ever before. Of course we all would like more of all of the above, and we should be willing to work very hard to achieve it, as so many have done before us. And it's extremely frustrating. There are obstacles in every struggle; sometimes you are stopped, sometimes you see your efforts eroded in front of your eyes. If it's important enough you don't ever give up.

I am a non-Christian but I do believe there is great wisdom in the world's religions. I encourage you to consider this (paraphrased), and pray or meditate on it as is your custom:

"May God grant me the strength to change what I can,
The serenity to accept what I cannot,
And the wisdom to know the difference."

[Deleted User]

Hey –

Guess What? We went on a playdate solo on Friday. Yup, all alone – no therapists or parents lurking in the bushes, or lingering for coffee.

The kids went to McDonalds for lunch and apparently after much discussion decided to pass on the toy as "Nimo just isn't as cool as Heman". (Thank God for Advanced Conversation, Gestures, Assertiveness, Social Skills Programs)

They played at the park (thank God for that "stay close" program)- and threw rocks in the water, but DIDN'T go in for a swim (we use to have MAJOR water issues – our guy LOVES water and is somewhat hypo sensitive to cold/wet).

Next they played at his buddies house: totally interactive pretend/scenario play with limited scripting (thank god for the pretend/advanced conversation/advanced emotions/social skills programs). They slayed dragons and tigers, rode starship fighters, changed their names and their characters at least twice, and generally had a great time!

But the BEST part is that when we showed up to pick up 2 hours later his friend didn't want him to go. The Friend wanted to our guy to stay and play, maybe do a sleepover… Our guy picked up on this and started in too, saying that he didn't want to leave his "best friend".

As the tempo picked up, with the friend complaining and protesting more and more loudly about our imminent departure, and the boring hours ahead without his friend, the other Mom became increasingly embarassed.

We however were proud. Proud that our non-verbal child has checked in, worked hard, learned how to talk, play and negotiate the social ground to make himself a "best friend" who did not want to give him up for a weekend away with Dad.

Our guy is still in an full blown ABA Porgram, and will probably be in one years from now. While our guy started "early", he did not start early enough and lost at least 1.5 years "tire kicking" MCFD Services. But without the ABA Therapy our guy would not have a "best friend" and a chance at "regular" playdates both as a host and as a guest.

All this to say: "Thank You" to Jean Lewis, Sabrina Freeman, and the many others, for paving the way forward, taking care to smooth out the bumps where possible and post "Danger! Danger!" signs where needed. Because of you the future looks bright indeed.

Have a Great Sunday!

the legers

[Deleted User]

Lets shoot that first marble people!
Someone must know someone with connections to radio or T.V.. I have spoken to Sabrina about this very same thing in the past and she said she would love to be involved in it. The public service announcement does not have to be about our funding problems. It would be about awareness of autism and that Feat is there to help them.
From awareness comes the "what if this happened to us" questions.
Then you have you public outcry.

[Deleted User]

In response to the last post…the reason there is no enormous public outcry for our children is because the majority of the public is not aware of the situation. I am amazed at the amount of people that do not even know what autism is. That is not entirely their fault. Alot of people on this message board did not know what autism was either until someone crept into their little ones room one night and stole their childs beautiful little soul and left behind a little body. That someone being autism.
Some GPs don't even know what it is.
The answer to this emormous problem is education.
The people of B.C. need to be educated. Doctors, health officials, nurses, teachers, everyone.
Couples that intend on starting families need to be educated. Everyone needs to be introduced to autism and know that it could slip into their childs room one night, or maybe even their grandchilds room one night. They have to know what to look for and what to also be prepared for.
Too many of us have walked this road.
We need to inform.
It all starts with with the first marble: How about a public service announcement on the radio/tv saying something like " Did your toddler talk and then seem to loose his words?" etc. etc. "if so, this could be autism, please call FEAT"
.
You get the idea…

Knowledge is powerful…it can lead to many things.The more people know about autism…the more they will learn about our plight and the road we walk. We need to keep it on peoples minds.
I believe that if the people of B. C. were more educated, then you would see that public outcry.
Then we'd see change.

[Deleted User]

Hi all
I've heard that the funding for autistic in Ontario is about 50 thousand dollars a year and in Alberta is 70 thousand a year. I wonder if it is true .I'd rather move there to get that funding for my child if it is possible . I don't know if it is O.K to use the diagnose in BC to prove that my son is autistic and to apply for the funding there? Will there be a wait list,can I get the funding right after I arrive or do I need to live there for a period of time to be eligible for it?Does anyone know how much is the funding if the child turn 6 and any infromation which relates to this please let me know so that I could do the best to help my little child. Thank you so much .
My email adress is trinht28@hotmail.com

PS :Thank you very much for every one's help when I posted the ad to ask about how to apply the money to buy the stuff I need for my son's workshop.Unfortunately I was refused to help from my welfare social worker no matter how I tried to convince her that I really need that money.

[Deleted User]

Would it be possible for a list to be posted confriming those that have been registered?

It would be great to know.

Thanks

[Deleted User]

Another thought to keep in mind on this subject: MCFD is not Revenue Canada. They are not connected in any way. MCFD is not going to care how you pay your therapists.

I just have to add yet another thought. I think the information they are giving out is just to scare families off the individualized funding. If they can scare you off the I.F., then your more likely to take services from one of their crappy government service providers. Don't give in. It's worth it for your child to use individualized funding and get proper services.

[Deleted User]

Anna:

You are not an employer. You are an individual buying
services from individual contractors. Have each of your
therapists and anyone else provide you with invoices for
their services and pay the invoices. This is no different than
doctors, lawyers, dentists or any other professional whose
services you buy. You are buying, not employing. MCFD can
get stuffed with their guidelines — they have no basis in
reality.

[Author]

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