Social Engagement

I have mixed feelings about Alanna's clinical psychologist lately.  On the one hand, he impressed me greatly this week when he said that Alanna is making good progress but he is concerned about her engagement and lack of initiation.
He is concerned she is too passive; taking direction but not initiating on her own enough.  Now, I agree with him completely, but Alanna does initiate to ask for things.  She asks for things all the time and if she wants you for something, she can be persistent!  However, she is often content to observe in a social situation and either zone out or wait to be invited to participate rather than go and do something.  For example, at pre-school, she will play with toys, but she will not go and pick something out she likes and play spontaneously.  You have to ask her to pick one or show her one to play with it.  This is fairly typical of how she is at home as well.

So the psychologist agrees with me in that he believes the ABLLS-R is not helpful for social programming.  His solution is to adapt RDI activities to increase engagement and initiation.  We will definitely be doing that.  However, he is also leery of us consulting with another behaviour analyst to get the programming and training in place.  Many ITs are very comfortable with discrete trial but engagement activities need to be more natural environment because by prompting you are kind of defeating the purpose.  The person with which we want to consult is someone with lots of experience in this area.  We think everyone will benefit from their knowledge.  How frustrating!

Issues in Education

Last night I had the pleasure of listening to Lindsay Moir speak about issues in autism education.  The dude knows what he is about - he knows about issues all over the province and how they have been resolved.  A few things I learned!


Ontario Spends More on Special Education Funding Per Student Than Any Other Jurisdiction IN THE WORLD.


I found this one hard to believe.  But it's not so hard, when he explained that a lot of this money gets diverted from special education to teacher salaries.  Last year, enrollment in the local school board dropped by 1500 kids.  Only 15 teacher positions were eliminated.  Since we know they were not teaching 100 students each, those teachers must have been re-assigned.  Teachers in Ontario are expensive.  After five years of teaching, many teachers are making $85,000 per year or more and they have the most powerful union in the province.  Not only that, but their massive pension plan (well managed too) owns a lot of businesses, so the politics are very complicated.  The claim is that, despite huge losses of Education Assistants (EAs) funding is still flowing - and special education money is being diverted to other areas.  This is because special education dollars are allocated on per board basis, not per student or even per school!


Your Child's Rights
I found out our children have the right to:

• Attend school for a full day, if other children can go for a full day.
• Have their needs met properly - can take a variety of forms.
• Go to school if not toilet trained.
• Be properly supervised for lunch if other children are supervised.

Grants

There are several grants available to school boards.  One, the Special Equipment Amount (SEA), allows parents to buy whatever they need for their kids to succeed at school.  There is no cap on this amount.  This means that, for example, if we needed a speech output device for Alanna at some point, that would get covered.  This is good because these devices cost $10,000 or more.  There is another grant to get two attendants (EA / Nurse) if your child has severe behavioural problems or is medically fragile (the first can be authorized by a psychologist).  And finally there is a grant to educate staff on autism.  This is fantastic because most reasonable teachers and support personnel will take the opportunity to be educated if the training exists!

Ways to get an EA

Lindsay was very clear that EAs are only one way to get needs addressed.  The other way is basically relying on "volunteers" - students in post-secondary settings who need placements, or seniors.  You cannot pay for an EA in the system because the union grieves that as work contracted out.  However, there are ways around this.  One woman in Toronto contracted an ABA worker to accompany her son 25 hours a week to school.  However, the contract stipulated that she was not paid for those hours - they were volunteer hours.  However, the woman paid the worker to be "on call" for 25 hours on the weekend.  The fact that she had never called on the worker on the weekend was apparently not important.  The school board took her to court on this one but lost.  I think this is complete nonsense personally.  If a parent is going to fund a support worker, why the heck wouldn't the school want that?  Yes they can't "control" them but it frees up resources for elsewhere.

You Need an IPRC For Your Child To Be Legally Exceptional

Many schools just try to put children on Individual Education Plans (IEPs) but if you don't initiate the Individual Placement Review Committee (IPRC) process to get your child officially designated exceptional, then the principal can withdraw services at any time.  IPRC kids must always have their needs met as specified by the review committee.  You can initiate IPRC on the first day of school.

Thanks to Lindsay for a great information session.

Augmentative and Alternative Communication

If you are a parent of a non-verbal child on the spectrum, you will have agonized over this topic.  These children need a way to communicate and in particular to communicate their needs.  Without a functional communication system, the child will use other means of communication, like leading an adult to what they want, or crying, screaming, and self-abuse.

The most common system introduced to children is the Picture Exchange Communication System (PECS).  The goal of this system is to make a child an initiator (not just a responder) of communication and to understand its usefulness through exchange of pictures for desired items.  Later, children can make comments and have simple communication exchanges with PECS.  This is the system Alanna uses.  There are six phases of PECS; Alanna has remained in phase three for months.  Currently she is able to go to her communication book, choose what she wants (or choose something representing a label if we ask her what something is) and bring it to us.  If it is a request she does it spontaneously without help and she brings it because she is internally motivated to get something.  We have not gone to phase IV because that phase introduces sentence structure, and we had, to this point, been making good progress on speech.  The concern from our psychologist was that Alanna could just start saying "I want" instead of the actual items, which she was at that point.  However, her vocals have really decreased.  Hours of mand training for good clear approximations are now met with silence or throaty "guh guh" sounds.  So now the question... continue with mand training with this much intensity or dial it back and introduce more complex PECS to allow Alanna to speak in sentences and comment?

Verbal behaviourists like Dr. Mark Sundburg, Dr. James Partington, or Dr. Vince Carbone are fairly persistent in their view that non-verbal children should be taught sign language.  Don't get me wrong; we use a verbal behaviour type therapy approach.  However, sign language is not always suitable... Alanna, for example, has a lot of trouble with imitation in general.  She is improving, but her language acquisition is much faster with PECS.  There is also the problem of usability - most people are not going to understand sign, especially if they are approximations.  However, a sentence of pictures is clear to almost anyone.

There are problems with PECS, though.  Eventually she will have too many and we will have to switch to a voice system if she is not vocalizing or picking up some sign.  To me, PECS seems more functional for long term use, but sign language seems better for learning how to talk.  Obviously, we want her to talk!

Here's hoping for some clear direction...

Non-Labour Day

There was no labour going on today.  Today, we met Grandma and Grandpa and took the kids to Storybook Gardens, where they were able to see animals and play on equipment, go through a maze and ride the merry-go-round!  Hurray!  Thanks to some good therapy, Alanna is able to enjoy climbing on the equipment and sliding down the slide independently.  It was great to see her enjoying herself, feeling proud of her independence and us knowing she was safe to do it. Thanks Grandma and Grandpa for a great morning!  Also, special thanks to Grandpa for the great photos!

Simple Joys and Decisions

Alanna is finishing up some imitation programming in head action imitation and foot/leg imitations.  She'll next move through the typical ABLLS-R sequence, like mouth/tongue imitations, arm/hand imitations and fine motor imitations.


Tyler, now 15 months, is imitating spontaneously.  I don't need a verbal Sd to get his attention, like "hey copy me!"  He makes eye contact with me and just tries to copy me, usually correctly but sometimes in a funny way.  This morning, I pointed to my nose and he pointed to his head like a gun (maybe he knew what he was doing after all!)


When I see this, I can either respond with a "I wish it it were this easy for Alanna but it's not", or I can find joy in this simple moment of being a parent, having fun, and knowing that I am so thankful he does not experience the same difficulties Alanna does in this seemingly easy task.


Today I choose the latter and I laugh at him - we have fun.  This moment never comes for some parents and I am happy it came for me.  Beyond thankful.

IBI Helps Most Children to Some Degree

I was looking through some old links and happened across this link on ONTABA.  Adrienne Perry, a professor at York University, has a significant research interest in IBI and is actively publishing on this subject.

Of note from the link above:

Children's rate of development (based on the Vineland age equivalent scores) during IBI was approximately double their rate prior to IBI, and this was true for all three initial subgroups, i.e., even the lower functioning children doubled their rate of development, as a group. This suggests that the developmental trajectory of children was altered during their participation in the IBI program. Many children were even developing at a typical rate (although they may not have "caught up" to typical peers).

Here is an interesting note - even those children considered lower-functioning doubled their rate of development while in IBI.  Even those kids "cut off" from IBI because their "trajectory" is not altered doubled their rate of development.  This statement tells me that discharging children from IBI because progression is not fast enough is more about money and is not what is best for the child.  Putting kids in school therefore would slow their rate of development to what it would have been pre-treatment.  Put another way, transitioning to school a child who cannot learn from their environment halves their rate of development.

In a more recent journal article:
Perry, A et al.  Predictors of outcome for children receiving intensive behavioural intervention in a large, community based program.  Research In Autism Spectrum Disorders (2010). 

On the impact of age at entry:

"...if the goal of IBI is to alter developmental trajectories and boost children into the average range, this may only be feasible if children begin IBI when they are very young.  Thus, it is critical that efforts are made to encourage early diagnosis and to reduce wait lists and ensure children receive IBI early whenever possible." pg. 10

The above quote comes out of some discussion that "best outcome" cases were strongly correlated with age at entry.

On the use of benchmarks:

"Thus, it seems to us most responsible to offer children with autism an initial trial of IBI, as recommend by the Ontario Expert Clinical Panel and to monitor their progress carefully using clear and specific benchmarks, as recommended by the Ontario Benchmark Development Expert Panel." pg. 12

It is important to note the authors, with the notable exception of Adrienne Perry (to my knowledge) are all current clinical directors in the Ontario IBI program or have been clinical directors in the past.

Yes, I wholeheartedly agree with early diagnosis and intervention.  I do not agree with the benchmarks.  ABA can help all children regardless of how fast they are developing.

Vocalization Frustration

My mission in life lately has been to try to get Alanna to talk.  The more reasonable part of me says that if I just let her talk on her own and give her lots of opportunity to practice (which she does during her six hours of therapy every day) she will.  But the wound up, anal part of me wants progress so badly.

Here's the funny thing.  The girl can talk.  She has had some great words, many of which are as clear as day.  Sometimes, she will echo a word clear as a bell.  The problem is that she doesn't retain anything for long.  Words that come and go (or have come and gone) include go, muffin, pretzel, bubbles, up, no, ball, sticker, playdough, juice, round and round.  She used to also try to read this book called "I Can Dress Myself".  It was cute to see.  But this was only when she read it over and over again for days.  Sometimes we get random echos back for words she hears.  It seems like it's all motivation with her.

Trying to run the standard echoic (verbal imitation) types of ABA programs don't work.  You can tell her to say "ba", but she has no idea what ba is unless you try to pair "ba" will something she may want, like "bubbles".  But she can approximate better than "ba" for bubbles, usually.  We have several words we are using Kaufman cards with - starting at a lower approximation and moving to higher ones as she masters the lower ones.  Again though I hope as we move up she retains the words.  I would much rather her be able to say /b/ whenever she wants than "bubbles" on and off.  I'll take slow and steady with retension over long phrases or even words at this point.

This week we are going to see a speech language pathologist (SLP) with some experience with PROMPT.  PROMPT is a technique used for dyspraxia of speech, which basically means a person has trouble getting their oral muscles to do the right thing.  Obviously to Alanna hearing the sound is not enough to imitate it, at least most of the time.  PROMPT is designed to help cue the child by moving their mouths into the right position to make the sound.  So far Alanna has been reasonably tolerant of manipulation of her mouth.  I hope this can help her make the right sounds!  I'm pumped!