Friday, July 30, 2010

Research Empowers

I think there are two types of autism families in this world.  Families who help others but mainly focus on their own journey, and those families who focus on their own journey, but remain concerned about those people behind them (and to a lesser extent, those ahead of them).

I spend considerable amounts of time looking at autism research (in journals and elsewhere), and I like to support autism research when I can, because only by researching can we unlock the autism puzzle.  I am particularly passionate about early diagnosis, something which is difficult and expensive in Ontario.  There is a research study being conducted at the University of Windsor on early diagnosis.  If you live in Ontario and have a child six or under, please consider participating.  It will help researchers understand barriers to timely diagnosis.  This will not help you personally if you have a diagnosis already, but think of the families coming after you - can you spare a few minutes to try to help them avoid the heartache you did?

Sunday, July 25, 2010

Alanna and Tyler at Play

This is not much of a post, but I wanted to share this video we took at Alanna and Tyler together.  Tyler is being shy, but he fills in the words to "Twinkle, Twinkle Little Star".  Alanna joins in to help Tyler get ready for the day :)

Alanna has been working on using her utensils.  Here is a recent video of her using a spoon!  We are thrilled!

Thursday, July 22, 2010

The Power of Play

We have been spending a lot of time lately in therapy (and trying to reinforce/generalize when we have time with Alanna) developing Alanna's play skills.  Play skills are the basis for many other interventions in autism, including Floortime (especially the PLAY project).  Now that Alanna is starting to gain some play skills, we can use these opportunities to develop social communication, eye contact and joint attention. Alanna can also begin to play independently in a functional/imaginative way.  As she masters playing with different toys, she can then play with them in her playroom downstairs and keep "busy" while we do chores in a way that's functional.  

Alanna can:
  • String beads like no-one's business.
  • Do a variety of puzzles; as she learns new puzzles she is doing harder ones.
  • Make pictures with shapes.
  • Build towers with blocks.
  • Play with a Mr. Potato Head and put the pieces in random places to make a fun head.
  • Complete shape sorters.
  • Feed her little baby, wipe her face, give her a soother.
  • Cut a piece of pretend birthday cake, put it on a plate, blow out the candles, and decorate it.
  • Pour herself some tea, drink the tea, put some bread on a plate, butter it (and she will sometimes say "ahm-nom-nom" when she pretends to eat). 
When Alanna is doing pretend play, she doesn't do it long because she is not able to think of too many novel actions yet.  But she will pretend without any prompts for several actions, and if you were an outsider she would look like a little girl playing with her tea set, for example. 

I have often wondered if teaching pretend play in this way is effective because I wonder if Alanna "gets" what she is doing.  But then I remember that young children engage in pretend play by imitating what their parents do, and that is how Alanna learned too.  Also, I see she generalizes, which tells me she gets it.  For example, she might pretend to eat something else other than bread, so I know she gets that plastic food is something you pretend to eat.  She feeds her baby but also feeds her bear and even her brother!

Play is an important part of intervention and I am glad we have put some focus on it!

Friday, July 16, 2010

You Reap What You Sow

Autism Ontario has appointment Dr. Joanne Reitzel to the Autism Ontario Board of Directors.  This has proven controversial to many parents because Dr. Reitzel is the clinical director for a regional autism program in Ontario.  Her primary job revolves around whether or not children continue or get booted from early intensive behavioural intervention services.  I wrote Autism Ontario on this topic, and I was pleasantly surprised with a reply from the chair of the board.  She acknowledged I wasn't happy about the appointment, but carefully explained the process of nominations and election, as well as conflict of interest.

Here is an older article excerpt, source here:
As parents across the province rally against wait times for an intensive and effective autism treatment, a Delhi father is demanding answers. David Mels has a five-year-old son, Adam, who is on the severe end of the autism spectrum. He doesn't speak, isn't potty-trained and his gross and fine motor skills are delayed. Adam was denied eligibility to the intensive behavioural intervention (IBI) therapy - a vigorous program funded by the government. The program helps children learn skills using repetition in a one-on-one setting. Mels appealed the decision made by a panel of regional clinical directors, psychologists and doctors at the Hamilton Niagara Regional Autism Intervention Program. The panel decided that Adam's autism was too severe for him to benefit from the therapy. "An independent party upheld their decision," Mels said. "But I want to know why he is ineligible. Show me the clinical and objective proof that says he won't benefit from this therapy. They have yet to show me that." The Autism Intervention Program Guideline, last revised in February 2007, says that intervention services are for children with "autistic disorder or a disorder considered to be towards the more severe end of the spectrum." Dr. Jo-Ann Reitzel, clinical director at the program, said IBI doesn't work with every child. "Every child with autism is unique," she said. "We do a thorough assessment of the child's development, physically and mentally, and identify the appropriate treatment that match the child's needs." If IBI isn't suitable, there are other therapies, although most aren't government funded. Mels believes the government is denying eligibility because it doesn't want wait list to grow. Dr. Joel Hundert, a psychologist with the Behaviour Institute, a private clinic that offers IBI therapy, said many parents feel the same frustration as Mels. "Because eligibility criteria is not objectively stated, it's hard for parents to understand why their children aren't eligible." He said the program is the preferred therapy for kids with autism. "It has hard research and measurable outcomes that proves its success," he said. But he added IBI therapy works best with children with a moderate case of autism. Mels said if he can't get help for his son within the year, he's going to sell everything and move his family to Alberta. "I've been looking into it and it seems they have more accessible funding out there," he said. He has explored private clinics like Hundert's but is unable to afford it without help from the government. "I'd rather move than go bankrupt," he said."
The reason parents are angry is because government assistance for autism in Ontario is focused around a narrow band of kids with moderate-severe autism.  If IBI does not work fast enough, the child is deemed too severe and is discharged.  If the child is too high functioning they are ineligible.  The claim is that "other more appropriate services" will be offered if IBI is not suitable but there's really nothing available, as mentioned by Dr. Reitzel in this excerpt and here in a research announcement.  I don't really get why non-intensive ABA is not offered to those on the very severe end of the spectrum.

So it this makes Dr. Reitzel an easy target.  She is just doing her job, and part of that is minimizing costs and easing the waiting list.  Every child discharged allows another to come off the waiting list, which is always a political hot potato in an election year.

I still feel that given her involvement in the politics of IBI in the province that she is not suitable to sit on the board.  However, there was democratic process, it was followed and she was elected.  I cannot disagree with this process and one can certainly not say Dr. Reitzel is not an expert on ABA therapy for autism.  I do hope she recuses herself from matters involving early intervention policy for Autism Ontario.

Thursday, July 15, 2010

Stopped Clocks And Glass Prisons

Kim Stagliano calls autism the "pain of a stopped clock".  It's an apt analogy for some people with autism.  For others, the clock is very slow.  Trying to "reset" the clock to the right time for someone with autism requires 5,000 rotations on the back of the clock for a second to advance.  In essence, you are lucky if you can speed it up some and get it working better, but resetting it is very difficult.  As a parent of a child with autism, I have to agree that the picture she shows is painful.  She is a toddler in a teenager's body.

This picture is how I see Alanna's mind.  The glass is autism.  I can see her, but it is very difficult for her to see me.  Lately it has been very painful to see her withdrawing.  Her eye contact and general attending have decreased.  I used to be able to get her attention more easily, but the last two weeks (since the sleep problems began) have been very bad for this.  Thankfully she is sleeping better, but she still remains spacey and much less engaged than she was.  It is a mystery to me what the change is, but I hope we find out why soon.  Sometimes when she looks at me she stares through me, like the boy in this picture - staring out of her prison at vague shapes and noises she knows to be helpful to her without understanding what she is seeing.  When the glass becomes more transparent, she can see clearly.  When it frosts up, she is lost.

The social deattachment is, in my humble opinion, the worst thing about autism.  I could handle physical impairments more easily because I could explain them and relate to my daughter emotionally about how she feels.  If she were deaf, she would never hear my voice, and I may never here hers, but I would see she recognizes me and loves me by looking at her.  The hours of trying to engage her with nothing to show for it... that's when I lose it.  When she is less engaging, it is the most painful.  Perhaps worse than a stopped clock.

Monday, July 5, 2010

Autism Wins

This is how I felt today.  Autism beat me down.

As I posted earlier, Alanna has been having a ton of trouble sleeping.  This is having a big toll on the family in general, but particularly it is impacting her.  She is very "spacey" - it is difficult to get her attention, she is not responding to her name and her behaviours are worse.  I hate when she seems to regress.  I am hoping it's temporary because every step forward is won through her hard work, and going backwards is so very painful.  Lack of sleep is the only thing I can think of - unless the bits of gluten she got are causing the problem.

Today Tyler learned how to drink from a straw.  Spontaneously.  At 13 months. Part of me was proud of him, and part of me wanted to cry.  He took Alanna's straw cup, grabbed it, and drank lots of it as he walked around looking proud of himself.  Teaching Alanna how to do this has taken weeks of effort, and he is now more proficient at it then her in about two seconds.  It just makes my heart ache for her so much when something this simple is so difficult for her and so easy for everyone else.  Meanwhile, on a hot day (low thirties but almost forty with humidex, ugh), she was not drinking much from her straw cup in the hopes her sippy cup would reappear.  Learning is hard and transitioning is hard.  And my son did both so fast.

Moments like this make me feel like a failure as a Dad.  I can't fix it, I can't always make it better, and I try to stay positive and celebrate her successes but sometimes the difficulty is so acute I just lose it.

Autism, you win today.  Alanna, Daddy will try to do better tomorrow.  

No Rest for the Weary

Sleep is remaining elusive for us.  Our supervising psychologist has us writing a sleep log.  We removed Alanna's toddler bed and replaced it with a form mat on the floor.  Last night she was up at 4:30am and did not return to sleep.  The night before, she was up from 2:30am to 5:00am, bouncing and screaming on her bed, and ditto the night before.

Tyler's room is beside hers.  I don't know how he sleeps through it.  I do know, however, that everyone, including Alanna, is in a fantastic mood when she sleeps through the night.  Tyler is happier and so are we.  Alanna is taking 9mg of melatonin at night (two doses, one given only if she wakes), plus she is on the swing to put her down at night.  The next most unhappy step will be to visit the doctor and put her on a sedative, but I really, really, really want to avoid that.  The girl is two years old and I don't want to drug her unless we get desperate.

We will be trying to adjust her sleep routine with music and calming lights on her walls; I am hoping this helps.  For those parents with kids with autism or intellectual disability, I know this is a common problem.  I have read countless pleas for help on-line and some kids just do not sleep.  So here's a plea... help.