[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

[Barbara Rodrigues]

Hi Everyone:

I just wanted to let everyone who was going to the workshop at SFU on Saturday that FEAT will be selling 'cards'. As you know, FEAT has no membership fees and accepts no funding from the Government – so this is one way we have in order to raise funds for the many good works that FEAT does, such as the great 'parent packages, the Broken Promises brief, the CIAT program, and much much more.

I urge everyone that comes to the workshop to buy a packet of these cards and in essence support FEAT of BC.

The cards are painted by various artists (children with autism) and are blank inside. They have lots of colours and the envelopes are brightly coloured and come in different colours. They make great 'thank you' cards to send to those people that help or make a difference in your child's life. The packets also make great gifts to give to therapists, friends and family. On the back of each is a small saying about autism and the child who painted the picture on the card. The cost is 20.00 per packet of cards.

So again, I urge everyone to come over and buy a pack of these great cards. They're very nice and you're supporting a great cause.

Thanks.

Barbara Rodrigues
Jeremy's Mother

[Barbara Rodrigues]

Great article in the Victoria Times. Sabrina got her points out strong and clear. I was upset to read the Attorney General's comments though. I have written him to voice my outrage.

Unbelievable! He says "Who is to make health care policy?" "Is it to be elected representatives of the people in government or the courts?" HA! The only reason this went to court is that for years the 'wonderful' elected representatives NDP ignored our pleas for help for our kids. They ignored the petitions, the letters, the doctors letters. So with no alternative, parents take the Government to court. They win, then the NDP appeals it. This is condemned by the Liberals (remember the radio interview between Joy McPhail and Christy Clark?)

I wonder how Mr. Plant would like it if his child's health care was in the hands of an incompetent social worker? I wonder how Mr. Plant would like it if he had to beg, jump through hoops or walk a picket line for 100 days to try and get only some help towards his child's medical condition?

Just some early morning thoughts.

Barbara Rodrigues
Jeremy's Mom & Advocate

[Barbara Rodrigues]

Hi Everyone:

This is just a comment (okay it's a rant) concerning the EIBI program and a recent article in our Kelowna/Okanagan Sunday paper. Apparently our region (Kamploops all the way down to Osoyoos) has been granted 1.5 million for it's EIBI program-apparently at a cost of 60,000 per child per year for a measley 20 hours per week of 'eclectic theraputic' therapy.

A parent from Kelowna is stated as saying 'Whether it's called ABA or EIBI, there's not a lot of difference, it's a step in the right direction'.

Now, while I cannot respond to this woman directly I wanted to make a point to all of you out there.

Make no mistake about it, there is MUCH more of difference between ABA and EIBI than it's name. I went to Mr. Kysela's talk concerning what his program involved. First off, he isn't using discreet trials, he doesn't finish the loop off if the answer is incorrect or not responded too- ie: doesn't give an informational 'no' nor does he use errorless prompting. They just start the trial all over. Won't that be nice and clear for our kids, who already don't quite know what we want from them, let's not make learning discreet. Mr. Kysela doesn't like the use of the word 'no'. The program is also not 'behavior based' and apparently there is the use of 'natural teaching'methods developed by Mr. Kysela that will also be used. We also have first hand knowledge of this program as we were also subjected to it(doesn't work).

Next off, in those 20 hours of 'eclectic therapy' they are using sensory integration techniques which is another unproven (mind you I know from experience it doesn't work) method.

My point to this is, we have to make sure that the Government and the public understand that this is not a 'first step' in the right direction. This is actually the same crap packaged up with a new name and a very expensive price tag. It involves the same old 'support workers' with their very outdated and untrained views of our kids. In my area, the very people that withheld knowledge of ABA from our son, and told me that they felt ABA was 'too structured' are now the 'new EIBI' program consultants. I am shocked and dismayed that the Liberals are allowing this to go forward.

We cannot allow the Government,nor the public, nor any unsuspecting parent to actually believe that this is in anyway a solution. It's not. It's not what the judge ordered, it's not the way to go.

We have to be prepared to say 'it's not good enough, our children deserve what every other child in B.C. is entitled to regardless of age or family income – accesss to quality health care with a provider of our choice!'

Here in the Okanagan I am amazed at the blind faith of parents who's children sit with no intervention and wait for the 'kindly MCF' to put into place a 'program for their older kids'. It's so sad for those children. In the end it will be those children that suffer. Where oh where is a strong FEAT member in Kelowna, they could sure use you.

Forgive the rant. I am truly disturbed by this.

Barbara
Mother and Advocate to Jeremy

[Barbara Rodrigues]

Hi:

The book I think you are asking about is the one put out by the New York State Department of Health. The one I have is called

'Clinical Practice Guideline
Report of the Recommendations
Autism/Pervasive Developmental Disorders'

It doesn't have all the data in it just the facts and statements about each treatment. A real easy read and clear and simple. It was 10.00 US.

The other book is bigger and has the technical stuff in it and it's called
'Clinical Practice Guideline: The Guideline Technical Report' I think it's about 15.00 US

You can call and order by Mastercard or Visa at
Health Education Services in Albany New York
Phone – 518-439-7286

Barbara
Jeremy's Mom

[Barbara Rodrigues]

RE: GATEWAY/SENSORY INTEGRATION

While I simply can not top the what has been said by Avery or Sabrina, I must add to the comments of this subject.

For you see, our son was subjected to more than 2 years of wasted time in which the OSNS Child Development Centre used the inadequate, useless or entirely waste of time so-called 'therapy' classed as sensory integration, Theraplay (based on sensory integration) speech therapy and music therapy, preschool therapy – all without any ABA components. So I too KNOW first hand how these 'eclectic therapies' work and they don't. My husband and I sat and watched our son get progressively worse and learn nothing! His stimulatory and aggressive behaviors increased and his language and social skills decreased.

When we finally found out about ABA (thanks to BCTV and FEAT for doing a news story on it in 1997) these so-called professionals who so want to help these kids – became defensive, upset and down right hostile at my demand for science-based autism treatment. They in fact, had already known about it but choose to with hold the information because they 'didn't like' ABA. Which is quite hilarious as now there is money attached to it, they are one of the P-Card programs.

As for these services being nothing more than baby-sitting services, that's what they are. They just wasted my child's time and the Government's money with inadequate, untrained, unqualified workers – who now that I look back I would never have personally hired for an ABA aide – none of them had the energy or the intelligence.

Everytime I hear the mention of sensory integration therapy I feel I must respond as my son was hurt by this therapy, delayed years of proper intervention because of this useless therapy.

ABA has worked for Jeremy. We have data and Jeremy himself to prove it. We can see the progression and measure it. The very first workshop we had we were able to start teaching Jeremy. Now, we can analysis behaviors, do the proper follow through and have a very different little boy than we did. We have a child who academically is age appropriate. A child who is happy, capable and no longer engages in nonstop tantrums and self injurious behaviors.

As for the diet, well that's also subjective. If they come up with science based articles on that I will read them absolutely. In the meantime here's some food for thought on why researchers don't use parent's opinions.

A study for a 'tourette's' drug for kids was to be done. It was a double blind study in which the participants would take the drug for one week and then one week off and so forth. Anyway, after one week, two of the parents dropped out. One because the drug had such amazing results they felt they didn't need it anymore for their son, the other because they said the side effects of the drug were so horrendous that they didn't want their son on it.

When the double blind study was revealed, neither child had been given the drug…..

Barbara
Jeremy's Mom

[Barbara Rodrigues]

Hi Everyone:

I have emailed our Liberal MLA (he will be new as they redid the boundaries in the Okanagan) He hasn't yet responded. I also emailed the Liberal campaign office directly. Below is their response.

Thanks for your letter to the BC Liberal Campaign 2001 office.

Autism is referenced on page 26 of our platform document, albeit briefly. We have been in touch with FEAT and assured them that we agree that autism is a medical condition requiring medical intervention and that government has a responsibility to fund effective treatment.

Parents need to have treatment choices for children with autism such as infant development programs, speech and language services, applied behavioral analysis, occupational therapy, physiotherapy and other interventions, which have been found to be effective.

We support early intervention services with respect to children birth to six years. And, it is our intention to work directly with parents to accomplish what needs to be done.

If you have any other questions, please let us know.

Sincerely,
BC Liberal Campaign 2001

I have emailed back asking about intensive services for those kids 6 years and over. Will post that response when it arrives.

[Barbara Rodrigues]

Thanks Isaac for posting that re: radio show.

Way to go Jean! You were fantastic! Amazing! Very powerful! Gotta listen to it again….

Barbara

[Barbara Rodrigues]

Hi Everyone:

I was wondering what thoughts everyone has on the upcoming election. Does anyone think a change in Government will help our kids and push through individualized funding for proper 'Lovaas' ABA programs and not these great little 'eclectic' programs that the Government's putting together. I mean, yes we will get a different Government but the people in the Ministries are not going to change, right?

What I am asking is how do we go about getting a firm answer/commitment from the new party in order to see some postive changes for our kids. Now, I know our MLA has been greatly supportive, etc. but are things really going to change in terms of funding for our kids if the Government is changed?
What should we do in terms of trying to make that a reality?

Thoughts/suggestions?

Barbara
Jeremy's Mom

[Barbara Rodrigues]

Hi Michelle:

I am resonding to your 'gripe'. First off, you should call Sabrina Freeman at FEAT 604-534-6956. She can be of great help to you.

Next let me give you some of my wealth of knowledge that I was taught.

Now also remember that you have the great court decision backing you up (thanks again to all those who worked so very hard to make this a success for our kids).

First off, you don't have to have an aide working with your child if you are uncomfortable with her or feel she's not right for your child. You just don't let her in your house. That's your right as not only her mother but I am assuming her case manager.

As for Kindergarten, again it is YOUR right to make the decision to put your child in Kindergarten or keep her in her Lovaas-style ABA program for another year. Legally children don't have to enter Kindergarten/school until the age of 6 years old. They don't have to go to school at all as long as you register and follow the home school rules. But whatever, it is YOUR decision.

As to denying her services, well even if she were in Kindergarten, she would only go 2 1/2 hours a day, leaving plenty of time for her to need and require teaching. Typical children learn 16 hours a day seven days a week i.e. every waking moment so giving our children 8 hours a day is totally justified. So don't let them bully you with that excuse.

What I would suggest is also keeping a paper trail of things said back and forth. This is why, it's good to write letters instead of phone calls. I was taught this early on and it was a most effective and very helpful tool. In the meantime, I would document the phone conversations that you have had up until now as best as you can remember. If you need to pursue further action, it helps to keep records. All this and more tips are kept on this chat board under Government issues.

Lastly, you do NOT have to answer to every decision you make regarding your child's health and well being. I would get my pediatrician's backing – mainly for documention. But remember we are parents of children with a disability. We are not abusive parents, neglectful parents, bad parents. Don't let anyone treat you that way.
If fact, the Government's mandate is something like 'the parent knows the child best etc.'

I hope this helps. Your post so reminded me of some of the things that I went through before I knew better. I hate to see anyone treated this way. Good luck.

Feel free to email me with any questions.

email joe_rodrigues@bc.sympatico.ca

Barbara
Jeremy's Mom

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