Thursday, April 29, 2010

Till Autism Do Us Part...

Many media reports on autism like to quote extremely high likelihoods of divorce for couples with autistic children, such as this one from CTV (click on the parent episode) that gives an 80% divorce rate.  That means for every five couples who are raising a child with autism, only one will remain together.  How very sad.

I have a theory that is not rocket science, nor will it be particularly surprising to many readers:  stress can kill a marriage.  The higher the stress, the more likely the marriage collapses.  It is easy to love your spouse when times are good.  You feel relaxed, rested, have time and money to spare.  But when times are tough - you're not sleeping, being run ragged and are scrimping pennies together to pay the bills, it is easy to tear up the person sharing your misery.  I think this is why it is so hard to truly understand the words, "for better or for worse" - because many people have only seen the better.

Our personal stress has increased tenfold since Alanna was diagnosed.  It is hard for me to think of serving and loving Becca (my wife).  It's hard to get up with the kids at 5:00am when I am exhausted but know she is too, or clean the house when she told me she would but couldn't get to it.  But that is loving her.  It is hard knowing we may always have a child dependent on us for the rest of our lives.  But caring for Alanna is loving her too.

I would be lying if I said I hadn't day-dreamed of what it would be like to have no children, to be free of responsibility.  I am sure Becca has done the same.  But she is my wife and I am her husband and I promised to be there, through thick and thin, autism or no.  And for my kids, I am their daddy - I promised to provide for them, protect them, and teach them.  I promised both of them the day they were born.  They have no rings to prove it, but I remember telling both of them quietly as I walked the halls of the hospital holding them close to me, rocking them to sleep.

So go ahead autism - try to break me.  You might do it, but the pieces of me will hold onto those whom I love - my wife, my kids, and our lives together.  I will hold on until I can't any longer.  I promise.

Friday, April 23, 2010

30-40 hours? REALLY?

Sometimes well-meaning individuals question why I would ever want to have Alanna in intensive therapy for 30 to 40 hours a week when she is currently receiving only 15.  I have heard comments like, "shouldn't she just play?", or "won't she get dependent on her instructors if they spend so much time with her?"

I think this stems from a misunderstanding of what autism is and how education treats it.  Individuals with autism are completely learning disabled.  Most of the time to get started you have to draw them out of their world long enough to even get them to interact with you - this often requires intervention from an occupational therapist to deal with sensory problems.  Once a child with autism has some sensory regulation (whether through providing needed stimulation or making an environment tolerable for an over-stimulated child), you have to get them to attend.  That is, be able to look at you and pay attention to you for more than 0.2 seconds.

Once a child with autism can attend a little, they can start to learn.  But they typically have zero imitation skills, receptive language, speech or expressive language.  They have motor impairments.  They can lack ability to process tasks cognitively.  An autistic child's ability to learn from their environment is essentially zero.  So any attempt to allow them to play is likely to result in non-productive self-stimulatory behaviours, like jumping, bouncing, running around, staring at lights, flowers, etc.

Alanna after six months of therapy still has the speech of a ten month old (she is almost two and a half) and the receptive language of perhaps a 13-14 month old child.  Socially, she is perhaps in the 16 month range.  She is catching up, but she is so far behind.  Kids with autism can't play.  They have to be taught how to play, just like everything else.  Most time on their own is dead time, wasted time.  As they acquire more skills and catch up, their "alone" time becomes more productive and the self-stimulatory behaviours can decrease.

Kids with autism need intensive intervention.  If they don't get it they may lose skills until they are so developmentally behind their chances at catching up are greatly diminished.  Sure, they need rest - time to not think and to relax like the rest of us.  But most of their waking hours, like most typical kids, need to be doing very specific educational activities designed to help them learn, because they just can't on their own.

Monday, April 19, 2010

Paranoia is unbecoming

Here's a recent picture of Tyler.  He's about ten months old now and into everything.  He wants to walk so badly he is pulling up and grabbing my hands to pull up and walk.  Today, he was not well.  He coughed to the point of vomiting and was generally very cranky. He also did not respond to his name and would not look me in the eye.

As a parent with a child who has autism, you become a virtual screener of autism with every kid you meet.  I've looked at maybe fifty kids since Alanna was diagnosed and they are all fine.  I can't help it - I even test them using play so their parents don't freak out.  Tyler scared us today.  We look at him and when he doesn't respond to his name, it brings all of the terror back we experienced with Alanna.  Now, he does a lot of things Alanna never did.  I try to tell myself he is fine, but we watch him like a hawk.  I think we are paranoid, but we just can't help ourselves.  He has a 90% chance of being normal, but that's still pretty bad odds vs. the general population.  Please God, let him be autism-free.

Monday, April 12, 2010

I Really Hope IBI Works

This video below is a new clip from Autism Resolution Ontario, an advocacy group for ABA services in Ontario:

This is the next fear of parents who get publically-funded ABA for their kids - how long will it last?  If the autism provider doesn't think your children is "progressing" according to their criteria (each provider has different criteria - there is currently no standard), your child is ejected into the school system.

Here's what I don't really get:  the claim for ejecting kids from IBI is that "it's not working fast enough."  That is, they do not feel they are "altering the child's trajectory fast enough".  Even if the child is learning, they will remain autistic.  The solution is to replace an intensive program with a non-intensive program - special education at school... where your child will learn slower.  I get the reason, but I wish they would just call a spade a spade.  Instead of saying, "IBI isn't working so let's transition to more appropriate supports", they should say, "IBI is damn expensive and it's not going to substantially improve your child's outcome.  We'd rather spend this money on a kid who may have a much better outcome.  So still he or she is going to learn slowly anyway, let's put them in a learning environment where they can still learn but costs us a lot less money."  Of course, no one is ever going to say that to a parent's face.

I sure hope intensive ABA works for Alanna.  I'd hate to be in the position of these parents in 8-9 years.  So far, so good.

Thursday, April 8, 2010

The Grass Seems Often Greener

This happened rather suddenly today.  One moment, Alanna was kicking her feet in excitement seeing Mom come home, and the next she climbed up into my arms to cuddle.  Then, the eyes started to shut with the gentle rocking she so enjoys.  Then... well, you can see what happened.  Alanna sometimes crashes like this, but it's not very often. Like many children with autism her sleep schedule isn't very good.  She used to take hours to fall asleep and "crib bounce" for hours.  Now, she wakes up in the middle of the night and crib bounces.  Thankfully, she responds well to melatonin, a handy hormone that tells your body it's time to sleep.  Interestingly, some studies have found some autistic people lack this hormone.  As time goes on though she is becoming more resistant to the melatonin.  We have to give her more of it, more often.  I dislike giving it to her but she is so much better rested with it.

Speaking of resting... sleep is one of the many things with which parents of children with autism struggle.  Today my wife reminded me today that Alanna is close to 2.5 years old.  I stared at the VB-MAPP (a tool used for assessing developmental milestones for kids with disabilities) and was crestfallen seeing all of the milestones a typically developing kid would have met at 30 months.  I thought to myself, isn't she supposed to be catching up with ABA?  Well, of course she is.  I have to remind myself:  she's only been doing ABA for six months and she has probably caught up eight months in six, and that's with only 10-15 hours of ABA a week.  The optimal hours is more like 25-40 a week.

It's so hard as a parent as you see your child with autism get older.  Even as they "catch up", the older they get, the more unlike the other kids they look.  Alanna is still very young; there is still a chance she will be so mild that she can adapt and manage fine (she is not there yet).  I look at all the gains she has made, especially socially, and I know these should be celebrated.  But I am also so wanting her to imitate verbally so she can start talking consistently.  This is such a huge step for her - if she can verbally imitate, we can teach her so much.

So Alanna can't talk.  But some highly verbal kids are so inflexible they lose it over the slightest change to their day.  Alanna is pretty adaptable, even for a typical two year old.  Autism looks different in every person.  I have to remind myself it could look much worse in Alanna.  I also have to remind myself to "throw away" the typical development milestones... Alanna will reach them on her own time.  It's just so hard to do this.

I've looked on with envy as some autistic kids I see are verbal.  But the grass only looks greener on the other side... I have no idea what colour it really is.  I need to remember things are probably better where we already are.

Monday, April 5, 2010

1,478 Kids Are Still Waiting

This recent article in the Toronto Star is the latest occasional reminder that pops up in the media about the number of kids waiting for Ontario's Autism Intervention Program.  The waiting lists continue to grow, while the Ontario government attempts to gain some control by pushing off as many kids as possible into an inadequate and unprepared school system.  This is why so many parents "wait it out" for the Direct Funding Option (DFO) offered by the government program.  The DFO program allows parents to hire private providers to provide therapy.  For parents like us, who are already spending thousands of dollars every month on private therapy, it is ideal, since we can keep our existing team.  Many informed parents also worry that their funding will be cut off if their child fails any of the milestones laid out by their regional autism provider; having DFO allows parents to re-assume these astronomical costs again if needed to avoid being thrown into the schools when their children simply aren't ready yet.

Please don't get me wrong:  I'm not saying the schools have to be this way.  They could be more adequate if ABA therapists were allowed to work alongside teachers and teachers had the training they needed to provide ABA based learning.  But those resources are not available and we are not seeing any changes coming soon.

Ontario is facing a staggering deficit of $22 billion this year.  The Ontario Liberals claim they have removed the age cutoff for receiving IBI (true, but only after they fought it tooth and nail in the courts) and increased funding (also true, but the incidence of autism is growing and waiting lists are still ridiculous).  While I could forgive them for saying parents with children with autism must do their part, they have elected to spend millions more extending full-day kindergarten to many students in Ontario.  This program is estimated to cost $500 million annually to start and $1.5 billion annually when it is fully implemented.  Clearing the waiting list would cost the government $163 million.  Cutting it by half would cost $80 million.  That is with the current model - by giving all parents direct funding (a model used in BC), we could probably service many more children without paying the bloated costs of the regional autism providers (all government workers with benefits).

I am happy for those parents who can take advantage of full-day kindergarten next year.  Alanna's therapy costs will increase by 8% as the HST comes into effect in July, taxing her IBI services and helping to pay for full-day kindergarten.  Too bad Alanna won't likely be able to attend - she is still waiting with the other 1,478 children to get the skills to function in kindergarten.