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...

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!

Alanna's Ensemble

We are signing Alanna's contract with Thames Valley Children's Centre tomorrow.  I'm pretty pumped to have Alanna's therapy team together.  Most of the team is existing from private therapy, but we have some new faces.  We have one senior therapist, four instructor therapists, a clinical psychologist and a speech language pathologist.  We can consult with an occupational therapist as needed but aren't in active occupational therapy with Alanna.  This mostly has to do with the fact that OT services are not covered by our health insurance, but also because Alanna's sensory issues, though significant, are not seriously distracting her.  I would like an OT to review an appropriate sensory diet for her though so we can be sure we're giving her the right inputs and fading out distracting inputs.  Alanna also has on-going issues with fine motor skills, feeding and using utensils.

So begins our journey with buttloads of paperwork.  I will learn the requirements tomorrow but I am sure there are lots of rules to follow, some sensical and others nonsensical.  But I'll do whatever paperwork is required if it means we get help!

Relief At Last

Becca received an unexpected phone call today. Then she started to cry.  She busted into my office, breathless.  Her news caused me to go into shock for several minutes.


We have just secured a direct funding spot for Alanna from Thames Valley.  The earliest we expected this news was September.  Those of you who are paying privately for Intensive Behavioural Intervention (IBI) know this is the call you wait for.  It's like being told you just won $50,000 in the lottery because that's how much it costs to pay for IBI annually, done properly.  It will release us from a huge financial burden, assuming she can remain eligible for service until she goes to school.  Presently, Alanna is two and a half, so we hope the earliest they could transition her to school would be in a year and a half.  Hopefully she can remain eligible until she is five or six, unless she does so well she "recovers" (I use that term to mean she no longer tests in the autistic range in standard psychological testing.)


For those of you still on the waiting list - I expect you'll be happy for us, but also ticked that you're still on the list.  We have been very blessed, only waiting nine months.  Most people wait two to three years.  While the regional system in Ontario works pretty well for us, it sucks if you live practically anywhere else, especially in Greater Toronto or in the North.


The irony is, if we'd waited on the public system, Alanna would just be seeing  a developmental paediatrician now.  She wouldn't even have a diagnosis yet.


The system isn't fair.  But today, I can only look to the future with a renewed sense of hope about possibilities.  I'll take that.  I could use some hope.  We all could.

Are We Crazy?

This week, we attended our "Parent Orientation" session at Thames Valley Children's Centre for the Autism Intervention Program.  There were six children represented, including ourselves (three couples, two dads, and two moms).  The kids ranged in age from 3.5 years old to age 6.  Alanna was far and away the youngest kid in the group at 26 months.  Every parent in the room relied on the public system for their diagnosis, waiting an average of 1-2 years for a diagnosis.  Not a single child has had any ABA intervention (or probably any intensive intervention of any kind) except Alanna.  Many parents were not even aware ABA services could be purchased privately and most were not aware of the costs.  I felt like a chump seeming "holier than thou" in the group since we've done our research and almost everything presented we learned months ago.

This has gotten me thinking - are we crazy?  We are killing ourselves to pay for Alanna's therapy and while some may argue we have the means to make it work (single parents with other children - it's not going to happen), most parents in the system aren't even aware treatment is possible outside of it.  They are unaware psychologists can diagnose autism and a 1-2 year wait just to get a diagnosis is not necessary.  If one used "the system", a two year old suspected of autism would not receive intervention until they are five or six if they are lucky.

So on the one hand I have to ask myself, if we are the only parents doing this, are we nuts?  Should we back off, restore some sanity to our lives and let the system take over? 

Is the reason the Ontario government can under-fund autism treatment because 90% of parents with children with autism don't know anything about how it works?  It's one thing to be aware of what is available and not be able to afford it, it's a completely different thing to have zero knowledge of it.

Seeing Alanna's progress, I can't bring myself to think of stopping.  We have to soldier on.  The system is a failure.  Crazy or not, our path is set until relief comes (17 months away and counting down) or we collapse from exhaustion trying to make this work. 

Waiting to Wait

The local provider of autism intervention where I live is the Thames Valley Children's Centre.  I am happy to report that after eight weeks of "waiting to wait", I can report that Alanna qualifies for the autism intervention program.  Now that we're done waiting to be on the waiting list, we can officially be on the waiting list.  How long you ask?  I don't know.  They won't say.  In fact, the latest from Thames Valley is that there is no "waiting list".  The waiting list for service is a constant thorn in the side of the provincial government, so the latest "trick" is to pretend there isn't one.  After all, once accepted, am I not "receiving service" by attending seminars on what autism is and how it is treated?  I beg to differ.  While I appreciate the politics of this issue, a waiting list is a waiting list.  Either your child is receiving ABA treatment or they are not.  Many are not and if you are unlucky enough to come from a lower income family, you are on your own.  While it is a sacrifice for us to pay for Alanna's therapy at least we are capable.  If you are only making $35,000 a year, paying $30,000 a year for therapy isn't going to fly.  This idea of "no waiting list" is smoke and mirrors designed to confuse parents who do not know much about autism and particularly for those parents who "rely on the system" to take care of their children.  If autism intervention providers in Ontario can convince people that they really are receiving service, then there is no political problem for the current government.


To be fair, the "behaviour coach" is probably invaluable to many parents who have not started an ABA program themselves.  We will certainly take advantage of this service, but it is not the same as IBI, and that is where the gains are made.  Early intervention should be a priority, yet children waste years of potential gains because they are forced to wait.  It's sad.  They have such potential if we would only invest in them.