[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Joanna Ng]

ART OF SCHOOL EXCLUSION:
1. RESOURCE ROOM!
2. SENSORY ROOM!!
3. NO MORE ROOM!!!
4. NO MORE SCHOOL!!!!

[T. Chiao]

Thanks, Joanne, for teaching and emphasizing the importance of education and advocacy to us new autism parents. I look forward to meeting you soon!

[Joanna Ng]

Hi Tina.
You are most welcome. I did not join FEAT till after 6 months of starting ABA. With a small boy and baby 2 years back, I hardly had time for anything else.
New families who joined now like you are very lucky, in the sense that you started early and are wise to look for advice in the correct network.
There are so many workshops out there. There are the ACT – but they are very costly; I have no budget for these costly workshops. ASBC's are good; and we get to fellowship after. That is where I knew about my consultant, she's local…and she's the best!
For new families like you, those run by BC Centre for Ability would be ok…for basic info like feeding, sleeping, fine motors…of course, there is no mentioning about ABA – but we know what we need. Why not attend because these are paid out of our taxes?!
There will be a lot of info. We need to scan them – I don't try to listen to everyone out there – but I see and believe in what's working for my child – and that's ABA.
I hope to see you in Jean Lewis's workshop on the 30th this month. We are lucky to have this topic on advocacy.
As I've shared – parents fled at this word "advocacy" – the school will show hostility when you started doing it. But to me, nothing in the world matters more than my little boy. There is nothing shameful or awful to advocate for our children. But some people are afraid because they do not wish to be 'black-listed' as trouble-maker parents by the school. Well….there is a better chance you won't if you have the correct info, skills and courage. It's a lie if someone tells you there is no obstacle in advocacy!
A parent hit the point by saying no regulation exists in the A community. That is why, we need the small 'a' [advocacy] in our big 'A' [Autism] world. We are the only one who can protect our kids' welfare.
I remember my former Consultant required writing a report every 3 months. Well, what's the use of those reports, of which I need to pay $1300 for each? The ministry does not require it. What purpose does it serve? The small 'a' kicked in.
What recently happened to little Hunter is the best witness. All our children will face that crisis if we don't react now!
Happy Easter!

[T. Chiao]

Dear Joanna,
Thanks for your thoughtful message. And thank you for being the only person that reminded me to post my email address when I requested feedback on consultants. So appreciated. If it weren't for you, I'd still be waiting for responses.

After your prompt, I received 45+ emails from parents sharing valuable feedback and personal experiences. I now feel confident about the consultant we've chosen.

Us new FEATers have a lot to learn and we are grateful to be learning from the best — those who have already walked the long road ahead of us.

Tina

[Lis Louwrier]

Dear Barb,

Thank you for your post. You said it so well. In our own experience, there have been tears of joy and pain over the years but we have seen many gains in the 8 years our son has been in program. It is a work in progress but ABA and the skilled consultants involved in our son's progress have made a huge difference in his life and in our life.

My heart aches for new families because I know the pain they feel and the energy it takes to start a program. Believe and persevere, in time you will see gains and cry when you need to. There is no shame in that. Not everyone recovers (my son did not) but starting a program and sticking with it allows families to recover other gifts and time together that might have otherwise been lost.

Wishing all peace at Passover and Easter.

[David and Barbara McLeod]

FEAT Friends,

The beauty of ABA is that it universally responds to all of the 'issues' our children have. Through ABA our kids learn to overcome feeding challenges, to tolerate hair cuts, to go to the dentist, to tie their shoelaces, to toilet, to shower, to rollerblade, to ride a bike, to play the piano, to play board games with peers, to make their beds, to brush their teeth, to read, to write, to produce power points, to order in a restaurant, to do math, to play Wii, to swim, to reduce negative / destructive behaviours, to run a 10 km race, to…. You fill in the blanks.

A skilled consultant sees all issues as behaviours (B), analyses it (A) and designs/applies (A) a program specific to your child to systematically work on each and everyone of them. (ABA) Brick by brick… regardless of your child's level of functioning. It works!!!

When folks tell you that other things work, too, you ask them to show you the data. When they say that ABA doesn't work for all kids – high functioning, low functioning, kids with language, kids with no language… you tell them it surely does. If it doesn't, the programming isn't appropriate. If it doesn't, the tutors aren't keeping data, aren't doing it right, aren't reinforcing appropriately, aren't adjusting as required.

Our 'severely' autistic 17 year old son, has learned to do all of the above and is a pleasant, loving, easy to be with, young man who, despite his very limited oral communication skills, is welcome in every class at his school. Because of ABA. Is it hard? You bet. Does it work? Absolutely.

"What's wrong with these kids?" Not helpful. Good teaching based on ABA principles works. To those folks I say lead, follow or get out of the way.

Barbara

[Nancy Walton]

Hi everyone,
I'd like to welcome our new members to feat and thanks to the older members who have pitched in their experiences and have given the newer parents hope. A common theme is that it's important to network and important to get educated.

The ABA Support Network and the Autism Society of BC hold monthly meetings with guest speakers. At these meetings, parents can educate themselves on ABA and parenting children with autism, and they can also meet other parents and get support.

At a recent ABA SN meeting, Katie Allen showed us recent research on three topics, one of which was how to best tackle eating problems. I have been heavily involved with my son's ABA program for 11 years and I learn something new at every talk that is presented.

I would like to encourage parents to join the ASBC and the ABA SN (the latter is free) and come to our meetings. The ABA SN also has neighbourhood groups where you can get support and guidance from others.

I know how busy it is when running a home based ABA program, but getting out to presentations and meeting other parents will be the best support you can get.

Hope to see many of you soon,

Nancy
http://www.abasupportnetwork.com

[Joanna Ng]

Hi Tanja and Tina.

Wanted to join the 'discussion' too but did not have the time till today.

My experience is the same as both of you. When we first sensed something 'missing' with our first child, I was pregnant with my second. I could recall how I needed to carry my boy because of his behaviors with my very, very big tummy. I had no room to think of the baby in me when my boy had behaviors. One time he pulled me, and I feel down – landed right on my tummy …to the ground.

We had little time for joy for our second newborn because my first was just diagnosed. How cruel life is! I should be happy with my little beautiful baby; instead my mind is full of anxiety and mixed feelings for my boy.

"What is there ahead of us?"

Feeding issues? There is probably no issues that we do not need to struggle with. Just finished cutting his hair – when he's napping. He dreads haircut. If you happen to see a boy with funny haircut – that could be my boy. Ha!

Food? He threw up frequently at meals. Eats only rice and his already limited range of foods seem to get even narrower as time goes by. No fruits or veg! He used to eat pizza and yogurt but no longer. He once loved Swiss roll, but one time, there was pieces of egg shells in the cream, he now refuses it. Absolutely no juice or candies or chocolates, which turns out to be good for his teeth. Still gags at colorful foods like cupcakes. We bought him an 18 inches chestnut cake for his 4th birthday, but he "eewww' at the look of it.

I once talked to a school staff about his picky eating. She commented before me, "What's wrong with these children?"

"What's wrong?" God knows what's wrong, if your own child has autism!

[Monika Lange]

Tanja,
You are correct about there being one hurdle after another. My son is now 18 and I now live in Calgary, but I still keep connected to FEAT BC because it was (and is) still my major support network. I would advise you to nurture your connection to FEAT as I have found it to be the major source of support for me. No one can understand the trials like those who have gone before you. Whenever I hear of a newly diagnosed child, it is with a deep sense of dread, because I think about their parents being hammered with one challenge after another. Many simply give up. With respect to ongoing trials and challenges, the best advice I can give is to prepare yourself for them. See them as inevitable speed bumps, so that when one comes along, you can recognize it as such. Somehow when things are expected, it minimizes the sense of injustice. And that is the biggest hurdle to overcome. Keep your chin up.

[David Chan]

you're more than welcome Tanja,

Three things I try to do, so I will share with you and who ever else is reading this. It's been a long time, so here it is in a nutshell

Do the work (the ABA stuff)

Don't borrow trouble.

Put one foot in front of the other.

Pretty much that is the zen of Planet Autism.

All the best

Dave
Mr. P's Dad

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