[FEAT BC Admin]

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[Ducky Piyo]

HI Tanja, I agree with your thoughts on feeding being very important to behaviors and worth investingating these underlying issues to help our children eat and thus benefit from ABA.

The best way is to include Autism is to change the Canada Health Act to include our kids. If you are diabetic you don't ever negotiate on the amount of insulin (thanks Dr. deLevie), you get the right amout of insulin. Why do we negotiate ABA or medical/health (including feeding issues).

I don't know how many of you paid out of pocket for a naturopath but I did and this is not included in MSP either.

So this is the BIG picture to help our kids. Otherwise, we all suffer and we all struggle individually just as you see in the response to your posting. Unfortunately if Autism is not included in the Canada Health Act it will only get more complicated when they are of school age.

There is so much I have been through with MCFD, FHAN, MOE I do not know where to begin and no need to write a documentary on this board.

It appears "lucky" that we get anything at all but the stroke of luck will be gone because any given moment we will be cut our Autism funding.

I cannot repeat enough it has nothing to do with luck, it is the undying love to ensure our kids have ABA that set these parents on "fire" to passionately fight in the Auton and Hewko court case.

As a group collectively then we can win this war for our kids. Divided we fall.

I definately am supportive of all of you struggling with feeding issues as I've lived it, still doing it and still not entirely out of the woods now. But as the other FEATer said, it will get better.

Hats off to all of you.

BTW I am no part of the Auton, pre-Hewko days, I am just a quick learner.

Keep our fight alive and fight the good fight. Together we can win!!

Piyo

[Tanja Weiser]

Thank you so much Dave for your words of encouragement. It's nice to hear that things can get better and that there's people out there that are living proof of that! I do try to tell myself that some of what I'm experiencing with my son is temporary and will one day pass (at least I can hope)…but when you're in the moment of it, that's hard to do. Plus I'm always afraid of what's around the corner. It seems you may get over one obstacle, only for another more challenging hurdle to be in it's place.

Thanks for your support.
Tanja

[Barbara Rodrigues]

I also wanted to add to what Dave, Franca and Barbara said – welcome to the new parents. I am sorry that you are here as it is not what we would chose for our kids but it is what it is and now we must do what we have for our kids to succeed.

My heart truly aches for those of you newly diagnosed and along with the new babies in your life. My best friend (whom I have known now for 14 years- we actually met at a FEAT workshop back in 1997) and I say – we would NEVER want to go back to the beginning and all that you endure from recieving the diagnosis to the struggles…so I am sending you out a big ((((HUG)))) of love and encouragment and strength and hope and determination and patience. It is not an easy road this one but truly you will find many angels along the way – people that make a difference in your life -your child's life and yes, you will be changed forever because of your child's diagnosis. And there is a grieving process as mentioned – anger, depression, denial….I lost my faith for many years and became bitter and jealous of our patients (I worked for a doctor) who drank and did drugs yet their kids were typical! Yet I didn't even drink coffee while pregnant – how could this be???!! Why me???!!! Why my son??!! But my dear friend mentioned above told me to read a very good book – When Bad things happen to good people – it changed my way of thinking and I found peace again. And you will find peace again. There will be bumps and hurdles along the way – don't get me wrong but as they come up – you will be stronger and you will be okay – your child will be okay – because you are here – you care enough to find us FEAT/support – to find out about his diagnosis and you will continue to find out how best to help him. See? You are already amazing.

In the midst of all you do – please remember to take a deep breath and take time when you can to take care of yourself (I learned the hard way that your body will alert you if you don't) I know it's overwhelming and it's exhausting but PLEASE don't be afraid to ask for help. And do vent – vent about the injustice – the bad day – and then rejoice in the small moments of success and happiness. Remember for our kids – these successes might seem like nothing to another person (he put his shoes on for the first time, didn't freak out at the pool, ate something new! -yes, Tanya feeding issues here too -)

I am posting a link to a poem written by a friend of mine in the US – here son is older in his 20s – she is not true ABA but I still like this poem. http://www.bbbautism.com/beginners_beirut.htm

AGain – I am sorry you are here but you will find there are some pretty special people/parents on this site – some of us are a little rough around the edges so bear with us – we got that way from dealing with some not very nice beaurocrats, politicians and specialists, Dr.s,etc. so just bear with us at times – one thing you can be sure – we will stand up for our kids. I will leave you with a Catherine Maurice quote…

And finally, it is important to note that ASAT will use the tools of science to achieve our mission, but we are not working for science as an end. The end, for all of us, lies not in the mere furthering of human knowledge or human technology. The end lies in the lovely faces of our children, in their sweet eyes, in their profound worthiness. It is science that guides us, but love that inspires us, and we will not fail our children.

Barbara Rodrigues

[David Chan]

Dear Tanja,

As most of the long time readers of this board will atest to the fact that I am hugely ESL, so please forgive me if I mix my metaphors, and dangle my participles.

I completely agree. How is a kid gonna learn if he's up all night, and hungry. I couldn't do that, why would anyone reasonable expect a child with Autism to learn feeling that way. These issues are real, present.

Although we didn't experience the picky food part, we did have the sensitive gag, and endless carb issues. The ABA programs help to slow him down, cut the food into reasonable pieces etc.
I understand the same strategies can be used to introduce new foods. He still doesn't really like novel foods, but hey he'll give it a try. The answer now is " no thanks, I'm not big on sushi". However, he will eat an endless amount of Lasagna. He just eats his share, but very fussy about putting away for snack the next day.

As for sleep. It took a while, but again, That issue was overcome using a little melatonin, and ABA, don't use melatonin any more, seems to do just fine now. Get up in the morning is still the same adolescent struggle that I have with my neuro-typical 14 year old.

Again, as I said before, this too shall pass.

All the best to you.

Dave
Mr.P's Dad

[Tanja Weiser]

Sorry Dave…I meant to send that little blurp about ABA & feeding issues on the message board to Ducky, not you.

To Ducky, I do appreciate your support as well.

To all the Parents before me who advocated for their children & future children….THANK YOU!!

[Tanja Weiser]

A heartfelt thank you to all that replied to my posting! It means so much to have your support & words of encouragement.

Barb…you're absolutely right, a support group for parents of an ASD child with feeding issues, is greatly needed!

Dave…While this message board is more about ABA treatment and advocating for your child…I strongly believe that feeding issues do have a place here. Especially seeing the response to my posting…I see I'm not alone and ABA treatment is and can be a part of the solution(if the feeding issues are behavioural). Also one knows, that a well fed child will tend to "act out" less & sleep better. Behaviours are put into overdrive when the child is not eating and in my experience, it also interferes with the child's sleep. This becomes a vicious cycle, which reflects on the child's behaviour. Eating & sleeping…2 key conponents to a child's development & learning abilities.

[T. Chiao]

Dearest Franca, Barb and Dave,

Thank you for your notes of encouragement. All of you have provided amazing support. You are wonderful Moms and Dads and I strive to give my son the support that you gave your children. You give us hope and determination to continue strong on this long journey.

Much gratitude,
Tina

[Franca Pastro]

I am joining Dave and Barb to say to the new FEATers "hang in there and don't do it alone". Tessa was 3 when I "tried" ABA for the first time. I say "I" because I was a single parent with 2 kids. Tessa was a "rag doll" – eating, sleeping, sucking her thumb. It was not until the first hour of the first ABA workshop when Tessa was taught by the consultant to point. I cried of joy to know that my daughter could LEARN. Now Tessa is 16 and , yes, I also was hoping for a "recovery", but even though that recovery never happened, she has accomplished so much because of ABA intervention. She can read books and magazines, she loves to write to friends and family, she makes phone calls, jokes and lies!, she went to her junior prom. No, she would not have progressed this far without ABA. Over-eating and self-injurious behaviours were some of the issues, but we (married now) have had great consultants and therapists and many hours to make slow but permanent changes.

You (Moms and Dads)are the only constants in your child's life – Educate yourselves and support each other.

Franca

[David Chan]

Just a great big shout out to Barbara and any other long time FEAT'er out there in the cosmic ether. Thank you all for chiming in, I think that it's really helpful for the newly diagnosed families gets some comfort knowing that they don't have to re-invent the wheel.

Just think when we started, (that's a collective we) the wheel was square. (dolphins anyone ?)

Big thank you again

Dave
Mr. P's Dad

[David and Barbara McLeod]

Hello New Featers

My heart aches reading your posts. It does bring back strong emotions from our original struggles with all things Autism. Thanks to FEAT, Auton, Hewko, MFAN and all the wonderful parents and professionals we have met along the way, we still have the strength to stay the course.

Our son was diagnosed at age 2; he is 17 now. While I was hopeful that he would be a 'recovered' child, we are still working hard every day. Because of ABA, trained school support and the many amazing people who have worked with him over the years, he is a loving, easy going, likeable young man with many abilities. And yes, there are challenges – lots of them – but as Dr. Davies told us at our last assessment, Alex has accomplished so much because of intervention. I can't imagine what his life would be like at this point without it.

The feeding issues stories ring a particular bell. As you can see by the posts, you are definitely not alone!! Jean Lewis and I attended a workshop on Feeding Issues at a FEAT conference 15 years ago in a packed venue. It comes with the territory! It IS a behavioural issue and like all things ABA needs to be approached in exactly the same way. Get your consultant to help design a program for your child, too. Brick by brick, positive reinforcement and holding out longer than your child are all key components. It often takes someone else to make the first breakthroughs though. It is too hard for a parent to watch their child not eat. Don't try to do it alone. This would definitely be a good topic for a support group meeting.

Hang in there. It does get so much better.

Barb McLeod

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