Introduction to RDI

Keep in mind the following is as I understand it right now... there may (almost definitely will) be updates as I gain a greater understanding.

RDI In A Nutshell

So what is RDI?  Relationship Development Intervention is a process for remediating (or correcting, lessening) the core deficits of autism.  RDI does this by focusing on (not surprisingly) relationships.

The basic idea is that autistic people tend to be afraid of social interaction because they are uncomfortable with changing situations.  Because of the way their brains have developed, the world is a particularly frightening place.  Like anyone, they try to make sense of their surroundings by finding patterns.  So when they find something that works, they tend to do it over and over.  It is positively reinforced because it's successful.  The problem is that they get into very rigid patterns.  So that if something goes just a little wrong, they become unable to deal with it.

This difficulty with changing ("dynamic" in the jargon of RDI) situations is considered to be key to the core deficits of autism, and what distinguishes it as a disorder.

Unlike "neurotypical" children, there is a breakdown somewhere and so the autistic child fails to build on these basic social skills, which has a snowball affect in hampering their development.  RDI researchers have looked at all the skills that a normal child picks up naturally, and break them down so that your autistic child can learn them as well.  The idea is to slowly introduce the challenge that causes them to think, but is within their ability to handle.  Doing this builds confidence in themselves and eventually they will be more okay with change.

Basically, IBI focuses more on "book smarts" skills, skills that would allow you to function in a classroom.  RDI focuses more on social skills and "street smarts".

No Deviant Parenting Here!

So we met with our RDI consultant and she was quite personable.  She set up a camera and had us play with Fox for a bit while she taped it, which was a little disconcerting at first.  Afterward we met with her and she assured us that we have not picked up any deviant parenting.  This can apparently affect parents of children on the spectrum, where they have been trying and failing to engage their children for so long, that they pick up bad habits.  Luckily we're new enough at this that their hasn't been time for any of those to form :)

A Little Behind

So I haven't updated in a long time. By now we've had several meetings with our consultant, we've gone through a lot of the parent training (as RDI is a parent directed program) and we've done some work on child objectives.  More on this to come.

Upcoming

So again with the procrastination... but I don't really have time for a full update.  Instead I will put down a preview to whet the appetite of whoever might be following this as well as have a roadmap for going forward.

On the plate we have:

- Our first RDI appointment.

- Our 2nd RDI appointment (which is happening in an hour)

- What is RDI?

- The BOS system

- Books we're looking at.

:Duan

Complex Team Assessment

So we got the results of the Complex Developmental Team Assessment from KidsAbility in late November, but I've been busy with a colicky newborn to do any updates. I think I'll just go for smaller bite-sized updates rather than big sprawling affairs, as that seems more likely that I'll do more regular updates.

So, onto the summary: it should come as no surprise that they determined that Fox has delays in understanding of language, expression of language, speech sound development and interaction with others. Recommendations that came out of the summary report were many, but here are some of the highlights:

- They feel that Fox would benefit from speech and language intervention in the Early Years Program at KidsAbility. Of course, that means getting on a waitlist. The program is the More Than Words program, which includes buying the book of the same name. Fortunately, we've already done that part so we're ahead on that score.

- They feel that Fox would benefit from occupational therapy through the Early Years Growth and Development program at KidsAbility (you guessed it, another waitlist). In the meantime we were provided handouts to suggest ways to address sensory processing, fine motor skills, pre-printing and self care skills.

- They suggested that we participate in the KidsAbility parent education group "Understanding Our Sensory World Around Us" when the next one comes up in Spring 2009.

- They also suggested sending Fox to a structured daycare/preschool setting on a consistent basis. I think this is the suggestion I'm most skeptical about. It seems like being in an environment where there are only a few other of his peers (as he is right now) would be better as his caregiver can give him more attention. Plus there is no lack of opportunities to interact with children of around his age; he just doesn't seem to have any interest in it. Still waiting to be convinced on this one, frankly.

- We also have access to a social worker, if need be.

- And a number of links to autism sites were provided:

• Geneva Centre for Autism
• Autism Society of Ontario
• Autism Society Waterloo Chapter
• BBB Autism Online Support Network
• TEACCH - University of North Carolina
• Canadian Autism Intervention Research Network - Canadian Research Consortium

The OT determined that Fox has issues with Sensory Integration, particularly with the tactile (touch), vestibular (balance), proprioception (body awareness), visual and auditory senses. I think smell and taste are only left out because he can't tell us that he doesn't like what he smells :)

We were given a bunch of strategies to try to address these issues, and picked up a couple of books on the subject: Raising a Sensory Smart Child by Lindsay Biel and Nancy Peske and Sensational Kids: Hope and Help for Children with Sensory Processing Disorder by Lucy Jane Miller are the two we've picked up for that right now. I'm reading through the first, haven't started the second.

In any case, the IBI therapy continues and I'm starting to notice some improvements. Fox has become much more vocal, actually going so far as to do some multisyllabic babbling. He also will imitate some sounds now, like 'ba' and the 't' sound. He also has a very wide array of signs that he seems to have mastered, the problem still being that he doesn't really initiate communication. Oh well, one step at a time, I suppose.

We also finally meet with the RDI consultant as well this Friday, which will be interesting to see how that works - hopefully I'll have an update on that Friday or Saturday.

There's always something...

So, I haven't updated in a long while. That's getting to be a habit of mine. We've been pretty busy in the five months since my last update, but let's see how much I can recount of that time.

So we finally did get in contact with a Speech Language Pathologist, who was running a home practice as well as working out of an office. She gave us a few tips and tricks to try but ultimately said that we might see better results going with an Occupational Therapist. An OT, at least for small children, focuses on play since that is the bulk of what a toddler will be doing. Normally, children develop through their play, and it was the SLP's thought that Fox wasn't really ready for Speech therapy. She also worried that he had developmental problems that was hampering his growth. In any case, she was closing down her home practice and hadn't decided whether or not she would keep Fox on as a client. So we stopped seeing her in August.

On August 2oth, we brought Fox in to see a pediatrician, who diagnosed him with autism. He scheduled a CT scan and some blood work, and we have the follow up appointment in the next couple of weeks. Kidsability was informed, and Fox was taken off the wait list for speech, and put on the wait list for Autism.

The blood work didn't turn up anything untoward, but the CT scan showed that his brain was "underdeveloped" (not sure precisely what that means, hopefully in the follow up we'll clear all that up).

Now, the prevailing treatment for autsim is Intensive Behavioural Intervention, or IBI, which is based off the principles of Applied Behavioural Analysis, ABA. As I understand it, it is based on modifying behaviour through positive reinforcement. The government provides IBI treatment to autistic children in our region through Erinoak. Unfortunately, the waitlist is 2 to 3 years :(. We had our intake meeting with the folks from Erinoak on November 6th, and we get the strong feeling that Fox won't qualify as having a severe enough form of Autism Spectrum Disorder and thus won't get access to it. However it's still up in the air and would be two to three years out in any case. In the meantime, we're paying out of pocket for IBI-therapists to see Fox 3 times a week for 2 hours at a time.

We also had an OT do several sessions with Fox and she had a few suggestions as well. She also pointed us to the direction of Relationship Development Intervention, or RDI. So we met with the local consultant and are interested in that as well. I ended up going to a conference which featured the developer of RDI, Dr. Steve Gutstein, and it looks promising.

Now with the bad news out of the way, there's also some good news: on the spectrum of Autism, it seems Fox will have a very mild form (what they call a "High functioning" autistic). While it means we get hammered in the bank account more (since the government only pays for therapy for more severe forms), it's a good starting place and hopefully means the treatments will be more effective. We've also caught it pretty early, earlier than most (a lot of the stories I hear are kids getting diagnosed around 4. That saves us two years on the waiting list :). The IBI therapy that he's been doing for the last three months or so, while it hasn't got him any more vocal, he did finally master a few signs (open, more, all done) and he's good with a shape sorter.

On November 7th, Fox's sister Ruby was born, and while he at first didn't want to have anything to do with her at all, he's at least touched her and tried interacting with her.

So in all, there's still a long way to go there, but it's progress.

Enter the Terrible Twos

So I haven't updated in a long while, even though there has been news to report. Bad Daddy! So from latest to newest:

We celebrated Fox's 2nd birthday yesterday. Since he's still not talking, we figure he doesn't understand a lot of what's going, so we haven't bothered to make too big a thing out of it. Of course that didn't stop us from buying half a dozen different toys (all of which had to be assembled by me, the assembler extraordinaire) and a big chocolate cake from Sobey's. As expected, he really enjoyed the cake! We even let him have an extra big portion.

Presents included the new green wagon for two with the cup holder from his grandparents, an Elmo tricycle with handle so we can push him around while he gets used to the idea of tricycling, a Fisher Price parking garage with spiral ramp, 3 or 4 books, a train, a sand and water play set and a Playskool Busy Basics Poppin' Pals, which we've recently discovered he likes a lot. We also measured the boy and he's 3 feet right now. According to folk wisdom we've heard, you double the height at 2 years of age and that's around how tall he'll be as an adult. So right now the guess is just shy of 6 feet, which is unsurprising. If I hear what a big boy he is for his age one more time...

Also today, we have Fox's 2 year checkup. No concerns except for the speech and language delays.

On that front, we've noticed that he's back to babbling a bit, unfortunately still just a string of one sound. "G-g-g-g-g-g" or "B-b-b-b-b" seem to be the popular ones. But I suppose it's progress, right?

We also attended the Child Health fair a couple of weeks ago and got lots of helpful information. According to the nice and helpful lady by the name of Michelle we talked with there, Fox probably should have been on their list of babies at-risk for developmental delays because of his Preemie status. Likely he was missed because he didn't need to go to the Neonatal Intensive Care Unit; we had a heat lamp in our room at the hospital and he was under that most of the time. In any case, she also did a little more of an assessment, and put us on the waiting list for her group, which was much smaller than Kidsabilty's. In the meantime, we had also contacted Community Rehab, in an attempt to pay for assessment and bypass the 5 month wait at Kidsability. We also had an assessment with someone from Kidsability, which is where we found that Fox had a love for the Poppin' Pals, type of toy.

Michelle later had a home visit and went through longer tests with Fox. Her diagnosis was that he's developmentally delayed (no surprises there). She also got our permission to contact Kidsability about adding him to get assessed for Occupational development, which has to due with "appropriate play". For example, whether you use a toy car by pushing it along. Not quite as concerned with that, but it never hurts to be sure and it's better than finding out when we finally do get our appointment and then have to be scheduled for another one in 4-5 more months.

Unfortunately, our experience with Community Rehab hasn't been a good one. We haven't heard back from them as of the writing of this post. Lisa gave them a call and we found out a week ago someone had been assigned to our case, but we still haven't heard from them. Lisa called to enquire about it again and was just directed to voice mail, which still hasn't been returned. It's quite frustrating to not get any response from a place we intend to pay, so we're looking at other options. The website for Ontario Association for Speech-Language Pathologists and Audiologists gave us a few more leads that we'll give a try, and hopefully we'll have better luck there.

General Suggestions for Language Development

Things to Remember:

1) Get down to the child's level - Try to maintain eye contact if possible. This allows the child to see your mouth and also see that you are communicating with him or her.

2) Follow the child's lead - Initiate communication while doing something the child is interested in.

3) Repeat, Repeat, Repeat - This brings up the "Five Times Rule", where you use situations that arise during the day to teach and reinforce words and use it 5 times in three different situations a day, over a period of 10 days to two weeks.

4) Label, Expand, Imitate, Self-Talk - Labelling is just giving a name to an object. For example, when eating dinner, point at the cereal and say, "this is cereal."

Expanding is used in response to a child's interaction with you. Generally you add extra words to make the meaning of the sentence clearer. For example,
Child: Daddy. Parent: Daddy help.
Child: Doggie run. Parent: The doggie is running.

By imitating what your child has said, you are showing your interest. It is also a way of confirming that you understand what he/she said. When imitating, repeat back the sentence using the correct grammar and pronunciations. This will let your child hear the correct form without saying that he/she was wrong.

Talking about experiences as they are happening, since this is when they are most meaningful.

5) Pause - Count to 5 to allow the child a chance to respond.

6) Create a need for the child to communicate - You need to enable situations where to get what they want, they need to communicate. Some children don't see the need to communicate and so won't make and effort to. Clearly, you want to give them a reason to try.

7) Use your voice and facial expression to communicate to the child that you are interested - If you are enthusiastic and entertaining it makes communication more fun and keeps your child interested in the topic. Use facial expressions (e.g., smiling, nodding) and vary intonation in your voice.

Typical Language Development

So here's a summary of the information we picked up on typical language development.

10-12 Months:
- The child says his/her first word. The child's first words may not sound perfect or may not be used correctly. For example, the child may use "dog" to refer to any four-legged animal. With practice, this production will become clearer and will be used appropriately.

- The child follows simple commands. For example, the child responds appropriately to "Put that down", "Come to Mommy", and "Give it to Daddy"

- The child seems to understand simple questions. The child may respond to questions such as: "Where's the ball?" and "What is that?"

- The child gestures and/or vocalizes to indicate wants and needs. For example, he/she may ask for very common objects such as a ball by name and/or may gesture toward the object.

- The child starts speech gesture games. For example, the child tries to involve the caregiver in "peek -a-boo" or "patty-cake".

1 1/2 Years:
- The child uses up to 20 words.

- The child uses connected sounds (i.e., jargon) that sound like sentences in a foreign language. Jargon is often accompanied by gestures. The child will often point to objects and make up names for them.

- The child recognizes the names of 1 to 3 body parts.

- The child begins to understand such categories as food, animals, and clothing.

- The child uses common expressions. The child may say "What's that?", "All gone" or "Oh no."

2 Years:
- The child uses 2-word sentences. For example, the child may use: agent + object (e.g., "Mommy sock"), agent + action (e.g., "Tommy go"). At this stage, a child expresses meaning through the tone of his/her voice and the ordering of words in his/her sentences. The child may use word combinations that adults do not use (e.g., "allgone juice", "more up", "no down").

- The child has a vocabulary of approximately 50 words.

- The child follows 2-step commands that are accompanied by gestures. For example, the child understands the request: "Pick up your toys and put them in the toy box" as Mom points to the toys and toy box.

- The child uses such pronouns as "me", "mine", "my", and "you". These pronouns are not always used appropriately.

- The child uses negative forms such as "not" and "no" in combination with another word. For example, the child may say: "No shoe" when he/she expects his/her shoes to be in a place where they are not; "Not go" when he/she does not want to leave.

2 1/2 Years:
- The child understands such prepositions as "in", "on", and "under". For example, when the caregiver says: "The ball in under the couch", the child will go to get the ball from the appropriate place.

- The child produces 2- to 3-word sentences. For example, the child may say: "Daddy go car", "Bruno drink juice", or "Me hit ball".

- The child understands the concepts of "one" and "all".

- The child uses approximately 150 to 500 words.

- The child recites rhymes and songs. The child may recite or sing rhymes or songs such as "Twinkly, Twinkle Little Star", "Itsy Bitsy Spider" and "Old MacDonald Had a Farm".

Keep in mind that this is just average; some kids will start earlier and some later.

:Duan