Wednesday, January 26, 2011

Return to Speech Therapy

Speech therapy has been very hit and miss for us.  We've had seven different speech language pathologists since Alanna was diagnosed.  What I have learned is that a speech pathologist's effectiveness varies widely with their experience in treating children with autism and speech motor disorders.  It also very expensive - about $110/hour.  When I think that one hour of speech therapy costs the same as four hours of ABA therapy, I start to think that that hour better be very productive!

I am pretty excited about our newest speech-language pathologist because of her experience with oral-motor speech disorders - namely apraxia of speech.  Today during therapy we discovered that Alanna wants to say the right words (we knew this) but has no idea where to put her jaw, lips or tongue to make the right sound consistently.  When the speech-language pathologist started moving her mouth, lips and jaw into the right positions (allowing Alanna to make the right sounds), she started to grab her hand and put it on her mouth as if to ask, "please help me make this sound!"

Alanna does have two consistent words as of late - Mama and apple.  Here is a video of her saying both words... though the apple is quite faint!!

Tuesday, January 25, 2011

Reinforcer of the Day

Kids with autism are strange creatures.  Alanna has this new pattern I call "reinforcer of the day".  She picks something odd and carries it around with her, and if you take it away, there will be massive protest.  On the plus side, it can easily be used to reinforce her during behavioural (ABA) therapy.
Here is a list of things that have served as "reinforcers of the day":

  • A Backyardigan action figure
  • Toothbrushes
  • Hairbrushes
  • A small washcloth
  • The letter "A" written on a piece of paper (I'm not kidding)
  • Spoons
  • Blankets (she especially enjoys when you fold them up while giving to her)
  • Various clothing
What makes it funny is that the item of interest varies so much from day to day. We're almost to the point of making bets on what will qualify the next day.

Anyone else experience this phenomenon?

Saturday, January 22, 2011

Ontario Ministry Divisions Don't Help Our Kids

While researching this week (more on this on another post - I can't really talk about it yet), I spoke to several parents and I heard the same old refrain:  why can't my child transition from IBI to school more gradually?  Their children are six and seven years old, and they currently receiving intensive ABA treatment, but they would like their kids to be in school part-time.  In Ontario, this is not an option; children are either in full-time IBI (intensive ABA) or they are in school.  The school system does not provide adequate ABA supports because the education system does not provide adequate training or resources in the system.

So, parents are left with two bad options.  They can keep their child in IBI, getting the supports they need to have their child learn, even if they want their kids to socialize at school.  Or, they can leave ABA behind completely and try the school system.  This makes the waiting list worse because parents fight to keep IBI at a cost of $60,000 a year when less expensive supports would work just as well, if the government would allow a gradual transition to school and boards allowed behavioural therapists in the school system.

The parents to whom I spoke want their kids in school now.  But they can't because it means no ABA support.  So they are stuck, and meanwhile 1500 kids can't get service.

Here is what would be, in my opinion, the best solution:
1.  Regulate behavioural therapists so that the education system will not be afraid of them.  The school system allows other regulated professionals in the school, such as occupational therapists, but those therapists are regulated.  This is long overdue in Ontario.

2.  Transfer the Autism Intervention Program (AIP) and School Support Program (SSP) from the Ministry of Child and Youth Services to the Ministry of Education.  One mandate, one minister, one system.

3.  Allow a gradual transfer from intensive ABA to school.  Almost all intervention programs advocate this.  It is more natural, it is what parents want, and it will allow more children to receive service more quickly.

4.  Allow the professionals in (1) into the school system to provide proper supports to teachers and para-educators like educational assistants (EA)s.  Parents will even pay for this, saving the education system money in the long term.  

Thankfully Alanna avoids this whole problem by entering IBI at 2.5 years old.  She will probably be ready to transition by the time she is 5 or 6 years old.  But we are in the minority.  Most children receiving IBI are 6 or 7 because they had to wait 4 years for service.

Does the government ever ask the parents what they should do?  

Saturday, January 15, 2011

Facing the Firing Squad

This week, we visit with Thames Valley Children's Centre to do a six month standardized test - our old favourite, the Vineland-II.  I have mixed feelings about this visit.  On the one hand, we know we will still some nice gains reported, but on the other hand, as Alanna ages, even though her "age equivalent" scores will increase (essentially, her developmental age in a particular area), her "standard scores" (corrected for age) will likely drop or remain stable.  My suspicion is that her communication and socialization scores will drop, but her daily living scores will come up (even the standard scores) because we have been working hard on self-help skills and helping out around the house (domestic skills).  This is actually a typical autism profile - higher "daily living" skills, lower communication and even lower socialization, although in Alanna's case, I think her communication might be lower mostly because her play skills are bumping up her score (we have focused in this area as well).

Something that has surprised us as we will were preparing for this test is that Alanna's motor skills have been neglected over the past six months.  She has not made a lot of gross motor gains and in fact, in some areas, she has caused us concern.  Her balance, likely caused by an impaired proprioceptive sense, needs a lot of improvement.  She rarely runs because (we think) she thinks she will fall.  She trips and falls in general, runs into things, and has fallen down the stairs a few times.  She is "pathologically clumsy".  In any case, we will likely see a huge standard score drop in motor skills and will have to work hard in this category to ensure Alanna is able to continue to participate in activities later on, like more complex playground equipment, hopscotch, and riding a tricycle.

So while I am hopeful and in some ways happy to see how far she has come, I am also wary of the IBI cutoff boogeyman, the one excuse the autism program can use to claim IBI isn't working for Alanna.  So I hope, yet I dread.  Zip up the kevlar vests, we're heading in...

Saturday, January 8, 2011

PECS and Sign

For children with autism who are non or pre-verbal, there are two common alternative systems:  The Picture Exchange Communication System (PECS) and sign language.  By far, PECS is more popular.  It is easier for adults to understand, and also, as a selection-based communication method, is easier to teach children how to use.

Alanna is currently in "Phase VI" of PECS - the final stage - where she is learning to label and comment.  For example, she might choose two pictures, one "That is" and one "ball" and put it together on a sentence strip to say "That is a ball".

We are very grateful for PECS because it is the system Alanna uses functionally.  She has some words, and is learning some sign, but most of her communication is via PECS.

Having said this - there are problems with PECS.  Although PECS brings language out in some children, it does not seem to be doing so with Alanna.  Her imitation skills are finally getting to the point where she is able to imitate signs closely enough to make them useful.  So we are teaching sign as well.  One of the nice things about sign (other than the fact that we think it is bringing out more speech for her) is that it is more natural in conversation.  She can face me and sign and I can sign back and pair it with words.  Pausing to wait for her to find a series of pictures in a book and give it to me make the conversation much slower.

So, here's my take on the whole PECS versus sign debate... most kids need PECS to start because their imitation sucks (a hallmark deficit of autism), and because most people do not understand sign language.  However, signing with family is great if it can be taught because it makes conversation more natural.  It's also good in a pinch if you lose a picture or forget the whole communication book (I have turned around many times in the car because I forgot Alanna's communication book or we lost a key picture).  I'll be interested to see if it brings out more language for Alanna.  So far, so good.  We've been teaching her book and ball, and lo and behold, I've heard both words out of her lately!

As for being able to talk - we want this so much for Alanna, but we think she suffers from apraxia of speech, which makes it so hard for her to talk.  Hopefully, with some speech therapy, she can get more consistent with making sounds.  More on this in another post!