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[Laurie Guerra]

Barbara, Michelle and all of the Parents of autistic kids on this board,

My son is one of the children who has lost most of the symptoms of autism. I wanted to say thank-you to all of you who have gone before me in this fight because if it wasn't for you he wouldn't be where he is today. You all have taught me how to give my child the best treatment there was and still is!!!!

I now have given my life's passion back to this cause and solely for the reason that I have to tell other parents just what you told me. The TRUTH!

To those of you on this discussion forum, "hope for the best, be prepared for the worst, and sleep well at nights knowing you've done all you could."

Have a blessed holiday season!! You are amazing individuals.

Laurie Romey

[Lis Louwrier]

Dear Barbara

Your post made me cry. The eloquence with which you write is quite special. Your words are very comforting for new parents who do not know if they are doing all they can for their child. My own child has been in his program for 7 months and it it too early to tell what will happen. I too see my own husband working very long hours and doing very little for himself so that our child will have all he needs. And yet, when I think about recovery, I worry about all the things we need to be doing to make Ryan's program the best. Sometimes it is too much to take in. But this is not about us as the parents, therapists, etc, it is about our children. All we can do is help them.

Our son's gains to this point have been incredible to observe but we realize that none if it would happen without Ryan's hard work. It breaks our heart when we see him working hard at all the things that his little friends pick up as part of normal life but the fact that he has to work for it and they don't makes it no less precious. We all love our kids but the reality of this diagnosis is that it takes hard work to overcome the obstacles we are faced with. And the child with autism is the one that works the most.

Thank you once again.
Lisbeth
Ryan's mom (age 3-1/2)

[Louise Watson]

To Michelle and Barbara, your posts moved me to tears as well. you are both 100% correct in what you said, when we found out our son had autism my dad said to me that this is the project that i needed, i never dreamed what that would mean.I never really knew what the words always on the go meant until we started our program but the first time i heard liam say love you back or even mummy for the first time i knew it was all worth it, i have friends who say they cant believe what we do for our son but to put it into perpective if it werent for all the hard work liam has done there would be no need for me to be on the go all the time. and to all the parents whos kids havent talked yet I know that with this therapy they have probably done things that typical kids cant do.I have met many children with autism since we started our program and I can tell you that each and every one of them works as hard as the next so hats off to all our kids!!

[Monika Lange]

Barbara and Michelle, I liked your posts. As a single mother to an autistic son who has made huge progress but is not 'recovered', I can attest to the significant time and effort it took to run his program. But when all is said and done, the labour pains of that experience are forgotten. My memory focuses instead on how hard my son worked. I remember my little 3 year old spending 40 hours a week (for years) trying so hard to learn, while all the other neighbourhood preschoolers were out playing. I am filled with admiration for my son who has, through sheer effort alone, accomplished important things that other kids just learn by default. The fact that life has dealt my son an unfair card is sad for me, but to witness how he fought to overcome this was an honour to behold. It's not about me as a parent, and never was. Instinctive parental altruism drove me to be a trooper, but my son was one by choice.

[Deleted User]

Thank you Barbara for your eloquent and moving post. It brought tears to my eyes. As the mother of two children with autism, one who is almost "on the other side" and a second who is not, I completely and wholeheartedly agree. My child's recovery was earned through hard work but it has very little to do with me. Yes I worked hard for her, but I worked hard for my son as well.

Why does one child surge forward and make incredible progress while another struggles to get through the hoops? There are no easy answers. Each child has their own path, each accomplishes their own miracles each every day and every single one of these childs works harder than any of us can imagine.

Watching a child recover is amazing. But honestly some of the children that inspire me and move me the most are those I have met and worked with who may never recover but whose struggle has taken them through obstacles you and I could never understand.

We all start out with Recovery as our goal, some children will get there, some will not. As parents we must all understand that we need to put in 110%, but please do not pass judgement on yourself if your child does not meet that goal. We do not know what path lies ahead of our child, we do our best, we try our hardest, and along the way we learn lessons about strength, perserverance and courage as we watch miraculous events unfold.

No matter where these children end up, they are heros. And so are all of the parents.

Michelle

[Barbara Rodrigues]

Hi:

I think it is great that parents of recovered children want to share their stories – I think it inspires those just starting out and encourages us all. I know Catherine Maurice’s book got me through a lot of early rough times. That said, I just wanted to say a few things regarding some of the ‘inferences’ in the recovery topic post. This may be just an oversite but some of the wording seems to imply that the onus is on how a good a parent you are as to if your child will recover or not.

This is simply not true – for I know many parents, myself included, who have made my own materials – stayed up all night making materials –going over data– searched the internet – bought every book I could find and gone far and beyond to find the ‘right’ consultant. In fact, my first consultant, who was totally useless and did not have enough training, went on to aide in the recovery of another child.

I along with my best friend have flown (even though I have an extreme fear of flying) across Canada and the USA to Los Angeles and Miami to attend workshops by well known behaviorists including Dr. Lovaas. In our ‘downtime’ from the workshops we would run all over looking for ‘reinforcers’ so that we could maintain the ‘funnest house’.

I have had great consultants who again saw ‘recovery’ in other children. I have been the follow through queen – redirecting and dealing with things long after a child who excelled in ABA had to be watched for.

My friend and her husband left B.C. for Alberta to find treatment and funding. Her husband left a very prestigious job and had to put into upheaval his very important life’s work to relocate. She left the only city she ever knew –leaving behind her family and her friends to move to a city where she knew no one. These parents went through hell and back for this child –hiring the worlds best and brightest to work their son, yet he did not recover.

My husband and I have sold our camper, lost all our savings, cut out our cable and at times cut the second vehicle insurance (so this poor man who works 16 hour days – 6 days a week now had to walk 3 kms to work at 4:30 in the morning). We have gone without any extras like dinner ordered in, professional hair cuts, new clothes/shoes. At times when my husband was out of town after his 16 hour days – he had to go without supper so that we could pay for our therapists wages when there was NO money to be had.

I have seen friends work harder than many of you could have ever imagined to deal with highly self injurious behaviors or to get a child toilet trained. I have seen the blood (literally), sweat, bruises and tears of mothers as they try to deal with these severe behaviors.

And yes, maybe if the kids were younger when they started that might have helped but I know kids who started at 2 and didn’t make it. And yes, finances are getting better for our kids and yes, our kids will hopefully have a chance at an independent life with continued ABA therapy.

But please don’t infer that because your child recovered – you worked harder, stronger or better than those of us who have struggled and continue to struggle to help our children along this road.

Because as we all know – not all children in ABA do recover – it’s the luck of the draw – Lovaas himself said he could not even tell which child would make it – and he never once said one child recovered because the parent’s cared more than the other set.

Because if love alone could cure autism – none of us would be here right now.

So yes, it’s important to be vigilant in your child’s recovery if young and in their continued success if they haven’t recovered – but please, please do not imply –especially to the newer parents that if their children are one of the ones that doesn’t make it to the end – that it’s because they didn’t care as much, give as much, do as much or sacrifice as much.

Barbara Rodrigues
Jeremy’s mother

[Deleted User]

All Dried Up: Real Stories of Kids Who Have Lost Symptoms of Autism
Saturday, December 13; 10 am – 1pm
West Vancouver Memorial Library
Peter J. Peters Room
Entrance by Donation

Agenda

10-10:30
Settle in, find out who's in room and where their kid is at in programming, challenges they've had, etc. General Intro

10:30-11:15
Janet Pearce's Personal Presentation
11:15-11:30
Q& A

11:30-12noon
Jenny Obando's Personal Presentation
12-12:15
Q&A

12:15-1pm
Laurie Romey's Personal Presentation
1-1:15pm
Q&A

1:15-1:30
Wrap-Up/Thank-yous/Goodbyes

[Deleted User]

All Dried Up: Real Stories of Kids Who Have Lost Symptoms of Autism

Saturday, December 13; 10 am – 1pm

West Vancouver Memorial Library

Peter J. Peters Room

The lesson is: you can’t ever blink on the road to recovery. Half of the battle is the diagnosis you're child is handed and the other half is what you are able to do with that diagnosis. How soon you are able to start your ABA Program and how savvy you are as a parent: the ABA treatment provider you choose, the consultant you get; can you make your own flash cards overnight and incorporate them into your program quickly … or does it take your senior a week? How good is your video-modeling and how strong are your team’s peer play skills — do you have the funnest house on the block … and can you sustain it?

Every ABA Parent knows that hard-earned, measured progress can hinge on simple ingredients like how involved and vigilant are Mom or Dad and how loyal, dedicated and smart is your "full-house" team and how many hours are you able to fill: can you only muster 20 hours a week across 2 therapists or can your 5 person team rock out at 40. And how far are you willing to go to hold it all together … Will you sell your house, your car, give up your dream vacation, go into debt, run up the charge cards and borrow or beg money from family, friends and strangers. Will you relocate or travel for treatment. How well do you handle navigating the school environment, how good are your IEPs and what kind of advocate are you at school and what kind of school district can you afford to live in. How supportive are the other parents and kids around you in helping your kid learn how to talk, play, and learn how to learn. These are all important elements, some more critical at different times than others. But which ones are important, and which ones are negligent; and which ones, from a parent’s perspective, together form and influence the autistic child's "outcome".

We hope that you can join us Saturday, December 13; 10 am – 1pm at the West Vancouver Memorial Library in the Peter J. Peters Room for All Dried Up: Real Stories of Kids Who Have Lost Symptoms of Autism — a powerful, positive and enlightening afternoon about beating the odds and coming out "looking clean" on the other end. Four families will tell their story, using visual examples, on how they tackled the tough reality that is Autism sharing with us what went into their successful mix including their starting points, challenges and personal sacrifices in overcoming their child’s diagnosis and what life looks like at the other end.

Entrance is by donation; materials, coffee and treats are always supplied. All are welcome and we hope that you can join us for this truly extraordinary event.

Parent Presenters: Jenny Obando, Laurie Romey, Janet Pierce (tbc).

We will help you slay your giant!

Tamara + Anissa

[Deleted User]

Louise to answer your question about the FEAT of BC intermediate therapist workshop coming to the island… at this time we have not made any plans to teach this workshop on the island.

While we would love to offer this workshop on the island, unfortunately, due to our schedules it will be several months (minimum) before we are able to make it to the island to teach another workshop. And because of the high demand for the basic workshop, it is likely that when we do get to the island next we will be teaching the basic workshop.

If you are interested in attending the intermediate workshop, I would suggest trying to make it to the January 17th workshop.

Michelle Karren

[Louise Watson]

hi all does anyone know if feat will be having this workshop that was just posted over on the island, my team and i are interested but will wait if there is going to be the same one over here. thanks and merry christmas to everyone, Louise

[Author]

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