Starting RDI?

[FabTXMomma]

Hi all,

I'm a new member here. I was just wondering if anyone would like to tell me about their experience with starting up RDI with their child.

I have an almost 7 year old son, and I am considering starting up this therapy with him. We live a couple of hours from Houston and the Connections Center, and as far as I can tell, that would be the closest consultant we would be able to find. There are no consultants in our town or immediate area.

We have been told we need to attend a 4 day parent seminar to start with, but unfortunately my husband just started a new job and has no time off right now. Also, they do not provide childcare so we would have to ask one of our relatives to either stay with our son here or come with us. All in all, it would be very expensive for us to attend the seminar, when you add in the cost of the seminar fee, gas, hotel rooms and food, and obtaining childcare - our family all lives out of town so they would have to travel as well.

I have obtained the DVD and the Relationship Puzzle book so I can at least start there.

So what was it like for you to get started?
Any recommendations or advice is welcome.
Thanks!

[JungleWoman]

We did the seminar-- both parents arent required to attend.

[milivica]

OMG OMG OMG...do you even know how much I talk about RDI here? It's awesome, glad you'll be starting, do it!

I do not think you need to attend the 4 day seminar as a requirement for RDI, but maybe that is the case now. Make sure ok? I was so sick of seminars and studies and researching and trying to learn, I just went to a 2 day workshop and got a consultant, boom, and started. I didn't want to hear about what would help, I wanted to DO what would help, I wanted GUIDANCE already.

If you have not yet done the dvd or workshop, use the search function above, type in RDI, get a really really big cup of coffee, and read all my posts. I can post here, a letter I send to parents that write and ask me.


Ok, my email to a mom from Oprah:

There were two doctors, a husband and wife. They read through gobs of books on typical child development, to try and figure out what 'milestones' do not develop or develop poorly for our children on the spectrum...as well as what develops, then is lost. It's so intangible it's hard to describe, but, they isolated several aspects of development that pertain to ALL people on the spectrum. Instead of creating a world your child can tolerate (picture schedules, driving the same way everywhere every time, manually explaining rules of politeness to no avail, never ever ever moving the toaster to avoid the inevitable meltdown, etc...) what this intervention does, is build the neurological deficits your child has. For instance, if there are 100 milestones typical children develop, well, your asd child has developed 95 - and those 5 - effect everything in his life. Sort of like 5 weak links in a much larger (neurological) chain.

I swear to you, this works for every child, because it's not for 'autistic' development, it is typical development children without autism gain automatically, packaged in a way children with autism can gain from manually - with you as their guide. Look on google or ask jeeves for negative feedback, you won't find it, not by anyone that did the program (all the way, not half hearted).

The program is called RDI, it stands for Relationship Development Intervention. It's the first thing in my life, that was not bull. The site is www.rdiconnect.com . I thought the site looked like flowery promises from yet another doc that would profit off my kid's autism - it is not. No need to mention my name, cause I'm just another parent in the program, that has worked miracles for my child, and to my surprise - worked mirac les for me. Not just in the new world RDI has opened for me, but for the first time in 11 years with my son, I feel like his MOM, not his teacher - scientist - researcher - dietician - therapist, but his MOM. And a competent mom at that. I call that a miracle. You know how the Crocodile Hunter was about crocs? That's about how enthusiastic I am, about RDI. Which, anyone would be after searching a life time, and finding answers and direction at last.

Two years ago, I was at last considering an institution, for fear of my other child's life, I won't go into detail, it was horrible facing that decision, having been in those places myself as a child. I do not have what would be called a high functioning or compliant child, by any means. It was horrible for so many years, for so long I felt like a head on collision with a semi that careened into my lane, might be for the best for us all. Dark, dark days. Now, I have nothing but hope. HOPE, real actual hope, after all these years being told he'll need residential, will need heavy antipsychotics for the rest of his life, cripe I believed it all, thought they were experts - and being on the spectrum myself, it was a unfortunate case of the blind trying to lead the blind.

I know how crazy it was, to put my email on Oprah, but finding 'sanity' for the first time, with RDI, well I can't forget where I came from, those dark desperate crazy days of not only being a parent of a child with autism, but having survived autism myself. I don't want my kid to survive autism, I want him to be a kid, have a childhood, have friends, a productive job and loving wife - and have lots of grandkids. NOT to much to ask, anymore.

I hope all of this will make sense, I totally stink at summarizing. As I said, giving out my email on Oprah might be crazy, but as person on the spectrum, doing what is 'right' means everything to me. I speak to you, as a mother with a child on the spectrum, who now sees a real 'life' for my child. One in which HE gets to make the choices about his present and future, not some overworked frustrated low paid worker in a ward where fear and pain are the only constant, in my child's life, someday when he is grown and I am gone.

Give the concept of your child gaining FUNCTION, instead of skills, a chance to sink in...it is a very difficult concept, all therapies focus on skill, not function - gee why didn't I ever wonder, why my kid was sitting at a table 35 hours a week, being 'taught' to stack blocks without a meltdown - heck he could stack blocks, why teach him that, why teach him blind compliance? I don't want him to be all other and no self, that's all blind compliance will lead to, that and frustration, depression and likely self abusive behaviors for an outlet. When you are typical, and have had 'function' since birth that has developed automatically.

I would HIGHLY recommend, going to that site, and getting a better sense of what RDI is, and find a RDI consultant in your state. When I got a consultant, there was no waiting list, dunno if it will be the same for you. At our first meeting, it was like for the first time ever ever EVER, I was taken by the hand and told, "your son has autism, ok, here's what you do...." and week by week, have received guidance. RDI is paid for by many insurances, as for us our son is on disability so the state pays for his RDI because it is proven, and progress is documented. You send tapes to your consultant every other week, to make sure you are helping your child gain function, not 'skills'.

Back to 'function', the crux of RDI...it’s important to know the difference between functions and skills. You might think you are “doing RDI” if a child is participating in an activity, but if the child is just “doing the activity” and not developing positive episodic(emotional) memories, then it’s likely they are just practicing skills or going through the motions, as I suspect Jenny's son might have done with her example about throwing the ball...that is not developing functions. See? Is her son referencing her face? Is he noticing weather she is interested in the game or not, or is she merely a 'receiver' and 'thrower'. A child on the spectrum can mirror typical behavior, they cannot share themselves by imitation though. Do not worry if your child is so called 'low functioning'. In RDI, there is no such thing, you work on the function deficient in ALL persons on the spectrum. And relax, guess what, there is no 'window of opportunity'. If there were, I'd not have made the progress I have, starting at almost 42 years old. I am not the oldest either! I have no idea where this 'window of opportunity' stuff started, the brain is not solid, neurology is not concrete....when an older person has a stroke, they can relearn things, develop new neurology to speak, move limbs, they're not 'too old'. Well, autism is neurological, create better neurological 'function' and you automatically gain the skills....like a stroke patient learns to talk, move their arms, your child learns to enjoy a game with you because you're having fun both contributing to the activity, or enjoy a conversation because you're both sharing feelings and thoughts and ideas, not cause a conversation is an opportunity for your kid to unload every fact he knows about dinosaurs, the epidermis, or cheese - completely unaware of weather you are interested or not.

(continued...)

[milivica]

Here is an example from the RDI site:

For example, a compliant child might “go through the motions” without any real sense of joy, competence, or meaning. They might be able to toss a ball back and forth, without sensing any enjoyment or competence in doing so. In other words, they may be emotionally flat, just going through the motions, rather than actively engaging with a reciprocal social partner. To use another term, skills without functions tend to be “instrumental” – that is, practiced without an “experience sharing” focus. Some examples of skills without functions:

* A child playing “patty-cake,” going through the routine and getting the actions and words right, with no sense of fun or dynamic interaction.

* Being able to read but not understanding the meaning of what is being read (this is seen in hyperlexia, for example).

* Talking in sentences but not understanding that one of the purposes of conversation is to share experiences.

* Going to a party and making sure to greet all the other guests and say the “right thing” but not enjoying oneself or relaxing.

* Having instrumental social skills such as greeting guests, but not being able to participate in relationships that involve co-regulation.

* Knowing the words to a song but not being able to enjoy singing it with another person.

* One that Dr. Gutstein has used in workshops: Being able to tell a joke but not realizing that the purpose of a joke is to share laughter.

In general, people who have developed skills without functions can be:
Compliant but not interactive
Capable but not purposeful
Knowledgeable without applying their knowledge to practical situations (especially social situations)
Knows the “rules” but not the point of an activity

Two other sites...one I post on constantly, for 7 years here http://brain.hastypastry.net/forums/index.php you'll have to register, it's all free. We're totally broke, so if I recommend it it's either free or paid for by the state or insurance.

Another person I completely admire, had done several videos on YouTube, to to www.youtube.com and look up silentmiaow and be sure to see at least her interview on CNN as well as her video about being an UNperson. She's wonderful.

Finding RDI, was like finding a lake of cool clear water after dying of thirst (for answers for my son, and myself) all these years. It is my moral obligation to share what I have found. I cannot force you to understand it, to do it. If you are in Illinois, my consultant is the BEST, I cannot vouch for every consultant obviously. The program however, the RDI itself, is the first sound real thing I've ever found that works. I would absolutely pursue biomedical interventions, RDI will not cure epilepsy, food allergies, etc... But there is NOTHING out there, what so ever, that help children on the spectrum gain function.

I have no idea why the whole world, isn't talking about RDI. Because of it, now I'm a mom with a son. Not a mom on the spectrum with a kid on the spectrum. Not a mom worrying 24/7 about what he'll do when I'm dead someday, where he'll wind up, how he'll be treated, how he'll be mistreated. He has a shot, a real shot at everything I ever dreamed for him. It's like at 11, someone has handed my baby back to me, and I get to raise him finally, as a my son with nothing but hope in his future.

My very best to you,
From the bottom of my heart,
Milivica

[JungleWoman]

Mili, its a requirement to do parent training beforehand now.

But going to one of the seminars that they hold all the time is not required.

[milivica]

Hey JW, is it now a requirement to go to the 4 day, or the workshop (2 day)? Which one did you go to? I only went to the 2 day.

[JungleWoman]

I went to a parent training class. The class I went to was the first our consultant had to teach and she said that it was now a requirement.

I get invited to seminars all the time, but Im not interested in paying $200 plus room and board and driving!

Oh-- you have to do homework too-- its kind of to figure out who is going to follow thru with it.

We all passed, but so far Im the only one who has gone thru with assessment, etc. Robert watched the kids during our class--- 2 out of 5 families had their spouses with them though.

Lorraine was really happy to have Robert involved during Aaron's assessment and we are structuring the meetings around his lunch time so he can be involved all around.

Honestly, if Robert had come to the parent class, he would have lost interest SO fast-- we watched a bunch of clips of the RDI video *which numbs my brain too!* and talked about certain things. Robert is more of a hands on type of person-- and he had a lot of fun doing the assessment with Aaron.

[milivica]

Yeah some of the videos were mind numbing - yet now with some RDI understanding I watch the same ones in amazement cause I can match words with what I'm seeing, it's a new thing for me, really cool.

I didn't take a parent training class, sounds like a good idea. How many times can one consultant explain RDI, ya know? It's easy to see RDI as no biggie, if you don't get the whole function over skills thing, the 'why bothers'.

[JungleWoman]

Oh hey, whats great is, we got to see some of the video progressions of kids she worked with. One boy was 10 when she started with him.

He was a runner too and his parents were obviously scared to go anywhere with him.

This boy, in 2 months time, was able to walk 10 feet away from his mom at the mall! And he kept checking back with her, especially when he wanted to go into his favorite sports store. Even when she shook her head 'no' and nodded in the direction of the mall walkway, he was hesitant about leaving that store without going inside it-- but he complied with his mom.

It made all us parents teary eyed.

My son isnt a runner, but I know he has difficulties that are just as greatly dangerous to himself-- so I know we can get there!!

She said also that this boy is either 13 or 14 now and still progressing :)

So it was nice to see what other people in the community have conquored.

One thing I am bothered by is the fact that I had to find it and they didnt present it to me. (Well... Mili, you found it for me LOL and gave me a name!)

[milivica]

Oh man, I'd love to see that - I didn't see before after clips like that, not that dramatic anyhow.

Right now I'm working on that very thing with Vince - he will walk with me, but it's hit or miss. He does not mentally keep track of anyone when walking in a group, nor does he pace himself. That kind of thing. Now, if we're going say to a carnival and he knows mom=money to get in, he's glued to me. So, from a standpoint of getting needs met, he can pace himself, but not for the enjoyment of sharing a walk together, or feeling that 'we' of walking together. He never did have that invisible rubber band, that makes a toddler or baby, turn to look and see where mommy is, where they are in relation to mommy....

Anyhow, that video sounds incredible. I'd love to see it. Maybe when they finally get that system up. Sounds like you have an effective consultant that knows her stuff, wonderful.

[JungleWoman]

Maybe she'd be willing to put it on that system so we can share it. She says any time now and that system will be up and running.

[milivica]

Vince would be SO much further, if I could 'go' faster with RDI, takes me a while to understand it, then we only do it the limited time we're together either when opportunity presents itself, or I create it. That's really not much time, compared to nt kids getting to do rdi all day long, do you know what I mean?

Still, way better than not having rdi at all.

I can't wait till the new system is up...will be SO much easier implementing objectives you can see, than reading them.

[FabTXMomma]

Well, when I called the Connections Center and spoke with Nisha Patel, the Parent Training Coordinator, she said the 2 day parent training was optional. I could read the book and watch the DVD instead. So I'm in the process of doing that. But she said the 4 day intensive parent seminar is required before they would do an RDA.

There's no other consultants in our area. So I'd be going directly through the Connections Center, as they're the closest to us. There are only 3 other consultants in TX and they're all much further away.

I cried on the phone with Ms. Patel asking if there was a way around it, and she told me she was very sorry, but it is required.

I know my husband will probably shut down after day one, but I still think it would be better if he went. He's more likely to get invested in it if he goes, even though he probably won't enjoy it very much.

JW and Mili, thanks for the advice and discussion. I do appreciate it. It's very helpful to hear about how much progress others have made with it. That letter is amazing Mili! Thanks for sharing that with me.

[milivica]

Wow, isn't that 4 day seminar like $2,000? I mean, I totally understand some of the strictness Gutstein has, cause RDI is really really easy to misunderstand. If anyone thinks RDI is not an amazing piece of the puzzle missing from every person with autism, if RDI isn't an epiphany in that respect, you don't get it.

But wow, we got the RDA done, I've never been to that seminar. See, this is why I'm pushing so hard, to get it into my school district, I want every parent's child, to benefit. Not just those with money, the ability to stay off work for 4 days, there's absolutely no way I can think of, dh and I could go anywhere for 4 days without the kids, short of giving them a tranquilizer dart prior to each conference day. And I'm not kidding. NO WAY could we do it. I understand, making the emotional investment it would take to go to the 4 day conference, I really do, but it just seems there should be other paths for parents.

Wow. I'm still amazed. I'm sorry you cried, I really understand why you would. I know where there's a will there's a way, but at what cost to the children and parents? Not everyone can just 'do' that. Especially when you're not yet sure about RDI, were I not sure of it, I wouldn't jump the hurdles I needed to, to do the 4 day parent conference - for starters, I'd claim I was single, I'd have to so dh could take his work vacation and stay with the kids. There'd be no other way for us....hmm well maybe I could drop them off at JW's house, she might not notice the extras, hee hee.

[peglem]

Expense aside, they should know how difficult it is for families w/ autism to even do a one day workshop. Just what do they expect us to do with our kids while we're getting trained? The consultant I talked to here recommended a workshop, but said if I can't do that, at least read The Relationship Puzzle and view the DVD. Wouldn't it make sense for the consultants to be able to rent out copies of the DVD? I mean, really, it seems like they want a huge $$ investment before they ever see your kid. I know people say RDI is worth the money- but if you don't have it (the money) what difference does it make if its worth it or not?

[milivica]

On the one hand, I'm tempted to feel the program should be more accessible to everyone and that is the responsibility of the creators of the program. Then again, how come there isn't the same coverage for autism as any other medical situation especially given the scope of it, 1 in 150. Until a year and a half ago, when Vince was 10, I had all my time as his mother felt I was like a donkey with a carrot being dangled in front of me, worse, that he was a little donkey at my side even more hungry with a carrot dangled in front of him on a stick. The more we tried, the harder we worked, we still starved. Seemed to me everyone had something for their child, but me, and it hurt, and it hurts me to see anyone not get such basic basic basic human needs for their child. You are not asking she become a rocket scientist, some communication and joy would be nice though. Why do we need special funding and insurance and state funds, to cover a national epidemic. It's very depressing to hear of anyone that cannot afford RDI for their child - state funding is why I moved to this state 7 years ago. We left all we knew, I had to move 18 months before dh - he had to get a job here first, he lived in what I called the ***** hotel for $75/wk, or at his mother's for MORE! And trust me, it's like a circus there, with three teens in the house (at the time). It was a FORTUNE to live in two places, and taxes, omg you pay a fortune at the end of the year, for working in one state and living in another. God it was awful. I understand now if you move here with your autistic child, you're $hit outta luck, no funding for your kid if he's over 7 I think it is. Very wrong.

[FabTXMomma]

Yes, it is $2000.

Which is quite a lot. We are extremely fortunate to have family that would help us with that expense if that is what it came down to. They have been more than generous so far b/c state services here suck. It's the scheduling and devising childcare (one of the grandparents hopefully) that will be the pain in the rear.

I'm pretty sure our new insurance will not pay for RDI, but I'm still going to try. I'm also going to try and see if I can get a grant from the state to pay for the seminar fee. But if all that fails, we at least have a family safety net. I don't know what we would do if we didn't. I really feel for parents who don't have supportive family. It would be devastating to us.

[milivica]

Yeah, I remember the $2,000 figure. I remember my friend and I were going to go, and they said it would be $2,000 a piece then, that amount is for husband/wife, and if only one spouse is going to go then it's still $2,000 then for one person.

I'd really like to see parents like Jenny McCarthy, Holly, Sly Stallone, Toni Braxton, Pinky on Grease, and that guy who was the annoying boss on Office Space, who all have kids with autism, if they really really want to help - should be pushing for insurance coverage for parents that can't afford what their child needs. It's discusting, it's like most parents with kids with autism watch them dye of thirst every day, with water all around, and no way to get it for their child. It makes me sick.

I'm going to post a thread, about enforceable, and unenforceable obligations.