Tuesday, May 31, 2011

Communication Update

I think if Alanna had the "talk" picture in her communication book she would probably give me these two pictures on a sentence strip.

Alanna has made some good progress these last few months.  She is in regular speech therapy with a talented speech-language pathologist (SLP) and she works directly with Alanna's IBI team to ensure the therapists are incorporating her techniques.  This seems to confirm our previous suspicion of a motor planning disorder (speech apraxia).  She can say roughly ten words, mostly prompted, but sometimes spontaneously.  This in itself is a miracle, since we were at zero words before, and any words is a step in the right direction!  The SLP has said that once she can say 50 words, her learning may accelerate because in typical development this is when children get the base to practice enough sounds to learn new words more easily.

Interestingly, although ABA has proven very effective to teach Alanna most things, it was less effective for vocal imitation.  Many early vocal programs encourage children to echo sounds, and then these sounds are built up to form words.  This has never really worked with Alanna because the sounds (phonemes) were meaningless.  Once she attached the words to meaning, she was much more successful.  However, now that she has words, we can use ABA principles to get her to use them appropriately.  And her PECS language has been taught successfully using ABA principles.

While we're on the subject of PECS, we are starting to see a spike in some behaviours.  I suspect this is because as she is getting older (she is 3 1/2 now, where does the time go?) she is realizing that not everything she wants to say is in her communication book.  She has, several times, gone to her book and looked at the pictures and then became very frustrated because she could not express want she wanted to say.  Once she started a sentence with "Alanna..." and then couldn't find the words to finish.  We are bringing in more complex requesting programs to try to reduce frustration, but I really think her cognitive ability has exceeded her expressive language so much that this will continue to be a huge issue for her.  Thankfully she has started using the sentence "I want outside" to mean either (1) I want to go outside and play, or (2) I want to leave now.  I am really trying to understand the root of her communication because I think half the time what we think is a "simple" request is simply the best she can do.  For example, "I want blanket" (her comfort object) might be, "I am afraid", but she has no pictures to say that yet.  She feels it, perhaps she can label it given the pictures but you can only teach so much at once!

I believe she is very much aware of her inability to speak and she is very frustrated by this fact.  She tries very, very hard in speech sessions to make words, and even tries to prompt her own mouth to make sounds.  On the one hand, it's a good sign that cognitively she is understanding more of her world.  On the other hand, she is also lacking the ability to express herself, and that is incredibly difficult for her to deal with.

I expect more behaviours as she tries to communicate.  But I don't believe this is "bad" - I think it's evidence of something good.  We just have to try to find ways to help her tell us what she is thinking and feeling.

Saturday, May 14, 2011

Window On Disability

I found this article in the Toronto Sun very interesting.  A 14-year old girl has been kicked out of school (and not just any school, but a special needs school) because of aggression issues.  She has two paid aides that are obviously not getting the job done.  It is unfortunate that behaviour analysts can't enter her classroom and analyze where the aggression is coming from.  Unfortunately for us in Ontario, Board Certified Behaviour Analysts, an American designation, isn't a regulated profession, so the schools won't call upon them even if hell has frozen over.  In any case, I have commented many times before on what seems to be a very inefficient and ineffective way for us to fund special education.

What is more interesting though are the comments people have made on this article.  While I realize the kinds of people who tend to comment on news stories tend have a certain world view, it is representative of people's opinions and in an effort to "seek to understand" them, it's worth examining.

Having an autistic, low functioning and non-verbal nephew I am very well versed in dealing with these children. It's unfortunate it has to be this way but in this case the school board made the correct decision. It wouldn't matter how many TA's were assigned to this child. If she is physically aggressive and unmanageable then there is no handling her in this environment and she is better off at home where she is comfortable and unstressed and her parents can work with her or they can hire a private care worker to work with her. Not one of you who hasn't had an autistic child or close relative should have anything to say negatively about this decision because you don't know squat. I care for my nephew deeply but I realize that he is in a private facility because that is the best place for him to learn and progress at his own pace. Other students do not deserve to have their education hindered because one special needs student disrupts the entire class structure. This decision was the most fair thing the school board could do.

My response:
What this person is claiming is that this girl is better off at home not disrupting the other children.  What they fail to understand, despite their claims that they are knowledgeable, is that every other child is entitled to an education.  What makes this girl different?  Perhaps the parents might be open to this little arrangement if her home workers, educators, or therapists were paid for - but the author is suggesting the parents pay or home school their child.  How is this fair?  I'm sorry the child is disrupting the class, perhaps the school could provide her with another work area where she can learn.  She has two paid staff, are these the right people?  Instead of blaming the parents can we think about changing the supports to help everyone?
I want so badly to NOT be cruel about this. But, you make it tough. She is 14 years old, and by Moira MacDonald's account she understands maybe 10 words. She is never going to learn to be social. Ever. $27,000 is being wasted if that is the goal. Leave schools like Drewry Secondary for kids where there is some hope of progress.
Because "we" are on the outside, looking in, we are "selfish", and perhaps misinformed...uncaring even. But I tend to think it's the other way around. People with special needs kids all too often don't see the math in what they are demanding. I'd love to see a society where kids like Emily get everything they need and desire. But those funds don't exist. $27,000 is being spent on someone with a command of maybe 10 words when (and forgive me for being honest here) people with potential are foregoing university educations for half that amount because there just is no money to assist them. That's just wrong, no matter what side of this issue you are on.

My response:
These are the words of someone who has never known disability.  I used to be like this person but obviously have gained a new perspective.  The truth is we have no idea what Emily is gaining, learning and observing.  Her inability to communicate does not make her intellectually disabled.  She may well be intellectually impaired but I don't know that.
As for wasting $27,000 - parents do not get a choice how this money is spent.  The board gets the money and the board decides how, and the unions like their cut.  Perhaps the parents would prefer to have her at home with $27,000 of funding to work with speech pathologists, occupational therapists or behaviour therapists, but that's not how the system works.
We don't choose who is worthy and who isn't in Canada.  This poster believes Emily isn't worth the money.  If we take this argument to its logical conclusion, we should euthanize people who take too many resources from society and nurture the strong.  If someone is ill and a surgery is costly, we should let that person die rather than let them try to fight.  No one would ever dare suggest this in a hospital (despite the billions it would save us), why does this argument fly in education?  Perhaps this poster would suggest the same... all I have to say is, I hope for their sake people who share their opinions never form government... and if they do, I hope the poster remains "useful" forever, else risk being disposed of as being unworthy.
I don't want to see the kid suffer, either, but let's face it...she knows 10 words at the age of 14. We start "educating" her and what do we get? 20? 30? 40 words? Maybe she can do math at a second-grade level?

Spending resources educating this child effectively amounts to a wager that this child will become a functional, productive member of society. As cold and as callous as this sounds, that's probably not going to happen. This child will probably have "special needs" for the rest of her life, and someone's going to have to pay for those needs. In other words, the odds on the wager are way too long for at least some of us to be comfortable with the bet that is effectively being taken with our tax money.

My response:
Wow.  This is just... wow.  So should we just institutionize Emily?  If she can't possibly make gains to be more independent, less dependent, contributing in some way?

The real failure is not with the school system as this article trys to portray. Let me correct this article, the 2 billion dollars is not "specifically to help special needs kids like her". It's to help all special needs kids in the school system. Dave Abel is obviously biased and irresponsible for making this suggestion. I don't like it but the reality is funding is not unlimited and these resources cannot be selfishly used when so many others can really benefit. There are degrees of disability and the funding must go where it will benefit the most.students. Some parents just don't care about how the other students in the classroom are affected. They don't care if their child has a negative impact on 20 other studends in the class. There's a limit enough is enough! I resent that my and ten other special needs children has to do without a program that may cost $1,000, because $27,000 is going to one student. Then on top of that, these students are being constantly interrupted in the classroom. If the parents are unable to cope, then unfortunately some children have to be institutionalized. Don't like it, but you can then have more specialized personnel providing better help to more children. At least 10 to 15 other students might get the programs that can be effective throught their life.

My response:
Wow, I'm sorry her needs are too much.  Institutionalizing her won't cost any less, but you could euthanize her.

A complete failure to accommodate? Sounds like they have accommodated this young person for many years and they have not been able to transition into the system. What happens when they are to old to go to high school? Who will be the next that will be expected to accommodate? The local College, University, Mall, Employer? What is the parents responsibility in helping there daughter fit into their environment? Pinching is in response to stress, where else but in the school system do they expect this to be considered acceptable behavior? The parents better hurry up and teach their child appropriate behavior. If it it takes two support staff now to safeguard this 14 year old from others, the future does not look very bright.

My response:
This person obviously has no idea about autism.  I seriously doubt the parents have not done everything they can for Emily including spending tens of thousands of dollars on treatments, perhaps more.  People see the aggression but don't clue in that the intent is not there - she is probably trying to communicate something, but with no behaviour analyst to figure it out, no one is listening to Emily.

And if it were that easy to "teach Emily appropriate behaviour" do you really think they wouldn't have done it already?

Behaviour is communication; it is not always what we think it is.  It is functional and has a purpose and it may not be "because I like to hurt others".