Wednesday, June 30, 2010

Straws and IQ

Alanna is engaging in her favourite pastime in these photos:  drinking juice.  She loves juice.  I have several spare PECs on deck for juice because it is what she asks for most frequently.  Now, before you accuse me of loading her up on sugar, "juice" is really short for "mostly water with some juice for flavour".  Attempts to give Alanna water have so far failed miserably - and attempts to give "wean" her off the juice additive have failed too.  We could probably do it if we wanted to, but the amount of total juice she is getting is still not that much overall.

Notice the difference between pictures!  The photo on the left is Alanna using her sippy cup.  The photo of the right is Alanna using a straw.  Woohoo, the girl uses a straw!  Most parents, if asked how their kids learned to use a straw, will tell you a story like this:  "Well, I had a cup with a straw and she wanted it so I let her try and she liked it."  Not this girl.  Oh no, not even close.  This took weeks of trying, and we finally had a breakthrough when we used a juice box because we could squeeze it into her mouth to show her good things were inside.  Every little victory is huge for us, including this one.

On another note, Alanna received her first assessment since beginning funded IBI.  Cognitively, she is at the 16th percentile - which translates to an age equivalent of 24 months, or an IQ of 85.  This means that Alanna does not appear to have an intellectual disability at this time!  We are thrilled with this result because studies have shown that IQ is a major predictor of outcome.

Wednesday, June 16, 2010

Peng Trial Sets Bad Precedent

This is not a real person.  It's a fake model used for a movie production.  But it might be what Scarlett Peng would have looked like after her mother, Xuan, "snapped" and drowned her four year-old daughter with autism.  She served a 2 1/2 year sentence for drowning her daughter (after receiving a two for one credit for a five year manslaughter sentence).  She intends to return to China and wants to have more children.  She is quoted as saying, “I won’t kill another baby, I won’t. I will be a good mother.”

Xuan has bi-polar disorder.  The judge said she acted "badly but without evil intent."  So this is justice?  Two and a half years for murder?  Is it understandable to murder children with special needs because yeah, it's really hard to cope sometimes?  I'm outraged by this story.  Obviously this woman needs help, but she is going back to China, where she will be free to kill any more daughters she chooses.

This story illustrates two things:
1.  The Canadian justice system is too soft.
2.  More help is needed for parents of children with special needs to cope to prevent these types of tragedies.

For those of you who are feeling some compassion for Xuan, don't think I don't.  But there are millions of parents who do not kill their special needs children - the ones who cope, who give up everything for their children.  There is a higher standard - a better example to show.  Xuan should be in jail, and if I killed Alanna, I should be there too, bipolar or not.

Tuesday, June 15, 2010

Genetic Testing: Curse or Blessing?

This article has been very popular on the news.  Genetic researchers have uncovered some patterns that can be indicative of autism.  Interestingly, the researchers found that some of the gene mutations are also found in people with intellectual disability - which explains why there is a high correlation between autism and intellectual disability. 

Don't get too excited, though.  Researchers say they can only identify about 10% of possible cases.  Peter Szatmari says, "I don’t think we have the science yet to nail it down. … This isn’t one gene, but a profile of genes, a pattern of susceptibility, not cause.”

And therein lies the kicker of this testing.  As the sensitivity of the test gets better, there will be increasing demand to do pre-natal screening for autism susceptibility, and this will likely increase the number of terminated pregnancies.  In some cases, children will be killed even when they may have never developed autism.  Some people do not support tax dollars going to help disabled individuals when the parents of the disabled child knowingly chose to give birth.  It is difficult enough to provide for disabled individuals without the stigma of "they should have never been born" crowd.

I am not sure I really support genetic research to identify gene susceptibility, because I do not think it will necessarily cure anyone - it will only allow parents to escape life with a disabled child if they choose to do so.  I would rather research dollars go to examining how people with autism process information differently, and how we can alter their brains through treatments to make them closer to how neurotypical people process information.  In other words - healing or curing, not detecting.

Early detection is already possible if medical professionals are educated.  Unfortunately in my area of the world - they are not, but that is not impossible to fix.

Friday, June 11, 2010


I think sometimes the autism community - parents and caregivers of autism - can become so internally focused on their own struggles that they can miss the far worse struggles of others.

Autism is an expensive disability, yet it is the only disability in many jurisdictions where so much financial support is provided.  Without a child having the "autism" label, much of the same supports, such as physiotherapy (or physical therapy), occupational therapy and speech/language therapy are harder to obtain.  Perhaps some of this is due to the cost of ABA which is targeted at children with autism.  However, I say that people with intellectual disability would also benefit from ABA.

This is polydactyly - an extra digit on the hand.  It is apparently common in children with trisomy 13, or Patau's Syndrome.  Some dear friends of ours have discovered their child yet to be born has this syndrome.  She will not likely live more than a few days.  How devastating for them - I cannot even imagine the grief they are feeling and have yet to feel.  I don't think it will even come close to the feeling I had in the pit of my stomach when I knew Alanna had autism.  It is like comparing a bee sting to heart failure. 

So the next time you despair over your loved one with autism, remember they are living with you and remember the hope that keeps you going - and then remember the people who have none.  It will ground you a little.

Monday, June 7, 2010

Cookies and Bed Bouncing

This was the sight I saw when I went to check up on Alanna today.  Ever since she got her new toddler bed, she is obsessed with her room and often goes up there, closes the door, and proceeds to self-stimulate herself into a tizzy (don't get me wrong, she is happy as a clam when she is doing this.)  I let her do this today because hey, after six hours of therapy I figured she deserved a break.  Usually there is much bed bouncing, tossing of books, tossing of small benches, and occasional spinning of her lampshade.  The closing of the door is not optional by the way - she becomes very upset if she cannot close the door.  It is kind of cute but I suppose we should break the obsession.

In any case, Alanna knows cookies when she sees them.  Apparently these were placed a little too low on her shelf after her final ABA therapy session today and she figured she would help herself.  I can't blame the kid.

Transitioning to a bed from a crib has been... interesting.  The first night, she slept well in it and was thrilled to have it - there was absolutely no protest over the change whatsoever (this due to the fact that beds bounce better than cribs and this is her favourite stim.)  The second night she fell out of the bed and woke up quite distraught.  To fix this problem, Becca and I ordered a foam barrier and put a foam mattress next to her bed.

Well, unfortunately for us, Alanna figured out that if she could fall out of her bed, then she could certainly get out on her own (this thought did not occur to her the first night).  So most nights now consist of bed bouncing and screaming until the melatonin kicks in... followed by more bouncing and screaming at 1 or 2am, followed by more melatonin.  We never really know how long she stays up.  It's dark in her room so she must move around a ton to make it fun.  Most of the time we find her curled up on her $15 foam mattress while her $150 bed is used as a trampoline.  I am proud of our investment. 

Most mornings when she is up the night before, she is dead to the world until 9am, but therapy often starts as 8 or 8:30am.  I guess with the summer we should try to bump therapy to the end of the day and let the girl sleep! 

Thursday, June 3, 2010

Benchmark Independent Evaluation is not the Issue

Andrea Horwath, leader of Ontario's New Democratic Party (NDP) has issued a press release on the validity of the independent review of the IBI Benchmarks by Dr. Louise LaRose.  She was paid $118,000 for this review and it was "sole sourced" - or awarded without a competitive RFP process.

Ms. Horwath is claiming the review needs to be re-done to be completely unbiased.  Personally I think Dr. LaRose was probably professionally able to do this review in an unbiased manner, and I think the real issue is whether or not the benchmarks make any sense.

The nine regional autism providers in Ontario all have their own "benchmark" criteria for continuing in IBI (intensive ABA therapy), excluding the one they started as RAPON several years ago.  ErinOak Kids has a continuation criteria document that looks a lot like the benchmarks but they do not call it that.  In fact, at TVCC, staff are forbidden from discussing the benchmarks, period.

The benchmarks have been out for at least two years and there are no signs they are being implemented forcibly by the MCYS.  I think the hope is that the benchmarks die quietly in bureaucracy while giving the autism programs free reign in deciding when discharge should occur.  All of the recent court cases have not been won by the complaining parent, so legally they know the challenges will die slowly but surely as the precedent is set.

My hat's off to Ms. Horwath for keeping the government's feet to the fire on autism funding, even if I think she is asking the wrong question.  I might even vote NDP - for the first time ever - in the next election.

Tuesday, June 1, 2010

Oh Goody, An Assessment

Tomorrow we return to Thames Valley Children's Centre to do a psychological assessment on Alanna.  This is supposed to be our "baseline" assessment.  Our future funding depends on how well Alanna does from this point onwards.  On the one hand I'm excited to see how much she has improved since November last year.  On the other hand, I'm really scared to look at the results... which will be a few weeks in coming.

If Alanna's assessments show improvement, her IBI funding will continue.  If not, she will be cut off and transitioned to school.

The two most likely tests we'll see are the Vineland II Adaptive Behaviour Scales, which measure Alanna's ability to function in the real world, and the Bayley Scales of Infant Development, which measure Alanna's skills and IQ.

Alanna, show them what you know!

UPDATE:  Alanna really did show them what she knew.  The assessment went very well and I think it was a fairly accurate demonstration of her skills.  Wooohoo!