Puzzle Pieces

One picture puzzle piece
Lyin’ on the sidewalk,
One picture puzzle piece
Soakin’ in the rain.
It might be a button of blue
On the coat of the woman
Who lived in a shoe.
It might be a magical bean,
Or a fold in the red
Velvet robe of a queen.
It might be the one little bite
Of the apple her stepmother
Gave to Snow White.
It might be the veil of a bride
Or a bottle with some evil genie inside.
It might be a small tuft of hair
On the big bouncy belly
Of Bobo the Bear.
It might be a bit of the cloak
Of the Witch of the West
As she melted to smoke.
It might be a shadowy trace
Of a tear that runs down an angel’s face.
Nothing has more possibilities
Than one old wet picture puzzle piece.
~Shel Silverstein "Picture Puzzle Piece"

Jordy is the kind of kid who knows more than he lets on.  There has always been an air of the enigmatic about him, even as a baby.  Sometimes, I tell you, his knowing smile is downright spooky.  There is still so much about Jordan that I just could not tell you if you asked me; he has unplumbed depths.  I do not know if I will ever be able to fully solve the mystery that is Jordan, but I am excited by the possibilities.  But there are some aspects to Jordan that we really must unlock, puzzle out, for his own good, so that we can ensure he has all the tools he needs to be successful in school and be a productive member of society and most pressing, to save the sanity of us all.  We just don't understand him sometimes.

It's been approximately a year-long process, but on Tuesday, we got the official diagnosis: Jordan has a neurological disorder on the Autism Spectrum.  Specifically for Jordan, his diagnosis is mild and the doctor who has been seeing us thinks that he is and will continue to be be very high-functioning.  

Please bear in mind, for the rest of this post, I cannot as yet claim to be well-versed in all aspects of this condition, so hopefully I can say what I need to in an accurate manner, but forgive me if I have misunderstood a thing or two, I am new!

Now, I know I am composing this draft on Thursday, and I am not likely to publish until Friday or sometime on the weekend, and "why the HELL am I telling you via a blog post, several days later, dammit?" you may ask.  Well, we're still pretty busy around here with the usual activities, I have had some paperwork to fill out as you may guess, and this is the way I best express myself. It's nothing personal.  Also, I know that family and friends may have some questions, and in order to preserve my train of thought, I'd rather get everything I would like to say out before the Q and A, and hopefully I will be able to answer most of your questions in this post.  

As I said, it's been approximately a year-long process, although I suppose you could argue it's been a five year-long process!  It's been a year since we got down to brass tacks and flat out asked, "Is Jordan autistic?"  And we are thankful, as ever, to Children's Hearing and Speech Centre for their guidance.  Jordan had only been at CHSC for three months when his teachers and Speech-Language Pathologist (SLP) suggested that a pediatric specialist conduct an initial behavioural assessment. After a few months on a wait-list that assessment occurred in May.  The next part of the process involved taking J-man to a psychologist in September, another visit with the behavioural pediatrician in the same month and finished up with our school SLP completing an assessment in December.  The pediatrician took all of the data collected and delivered the diagnosis at a family conference on Tuesday.  We didn't want to share that we were going through this process with anyone but Jordan's education team and occupational therapist because, really we didn't have any answers yet and we knew there would be a lot of questions.


Are you surprised by this?  I know we try to focus on the positive and upbeat times on the blog, so perhaps you had no inkling as to this part of Jordan's personality.  So what made us ask the question in the first place?  Well, his hearing loss made developmental assessments a regular occurrence, from the discovery of his hearing loss, we were signing off on the results of some new assessment every three or four months, usually administered by his SLP (Ingrid at DCS and Megan at CHSC.)  He consistently scored low on his social development, (eye-contact, turn-taking, how he plays with other children, that kind of thing.)  It wasn't ever a huge red-flag, but he has yet to score into the normal range.  Besides that we were living with things like:
 -Jordan insisting (sometimes in an irascible fashion) upon a blue plate, blue fork or spoon, blue cup and lid for every single meal, every single day,
 -needing to prepare him mentally for a change in activity, like telling him he would get five more pushes on the swing and then it would be time to go climb a bit, or telling him several days in advance about a family trip or dentist visit,
 -generally having the same breakfast before school every day,
 -needing to do things in a particular sequence such as who would get out of the car first or the order of his bedtime songs/stories
 -not looking at people who are talking to him in the face and/or not answering them at all
 -not playing cooperatively/interactively with other kids (besides his sister,)
 -using "canned" phrases from a favourite tv program or what we call "mommy-isms" rather than his own spontaneous communication
 -a really goofy awkward way of running where he sort of flaps his arms
 -at times a disturbing lack of empathy for others and flat expression / voice around non-family members
 -and lots of other things, I could go on all day
It was difficult for us, because any number of these things might be construed simply as a normal kid being difficult in a normal way.  And yet there were times when either we as parents found ourselves incredibly frustrated or baffled by some of this odd behaviour or Jordan became frustrated with us because we weren't understanding him as he would have liked, or both.  This, combined with his consistent assessment results and the in-class observations of his educators, eventually led us to ask to dig deeper.

If you don't know anything about autism spectrum disorder (ASD) I will keep it as simple as possible and quote the blurb on some literature given to us this week by Autism Community Training: 

This person has an Autism Spectrum Disorder
ASD occurs in 1 out of every 88 children
Austism is a life-long neurological disorder that prevents proper understanding of what a person sees, hears or otherwise senses.  People with ASD can become confused and respond inappropriately in social situations.

There is of course much more complexity to it than that, but that's it in a nutshell.  As the name indicates, folks with these disorders fall on a spectrum, from mild, very highly functioning individuals like Jordan to very severely affected non-communicative.  No two people will be exactly alike.  Our little guy essentially needs a little extra help in expressing himself appropriately, he requires as much routine and visual mapping as possible and though we want him to learn to be flexible in routines he will need lots of training and positive reinforcement to accomplish this.  Though the term has fallen out of favour, we suspect Jordan would have once been classified as having Asperger Syndrome.

Had you asked me when we first embarked on this journey of diagnosis what I wanted the outcome to be, I suppose without really thinking about it I would have responded that Of course I don't want to find out the my son is autistic!  But last weekend Chris and I discussed it at length and realised that having had some time to wrap our brains around the probable outcome we would be greatly relieved to hear that there actually is a clinical explanation for Jordan's behaviour.  We would be glad to know that there is a community and there are programs to support us and provide us with resources, and that we don't feel at the end of our rope some days without good reason.  If the outcome went the other way, we would have had to consider a child psychologist or possibly some family counseling, because as Jordan gets older, the stress and other negative outcomes of his often unyielding inflexible behaviour get less and less cute, and harder to ignore, navigate and (let's face it,) endure.  Some days our responses as parents aren't the most mature, helpful or loving.  Because it gets tiring.  It's exhausting trying to predict and avoid negative emotional responses to every possible situation in a day.  We are happy to have a name, at last, for the difficulty we face on a daily basis.

Having said that, Chris and I know that labeling someone doesn't change that person.  ASD is part and parcel of who Jordan is; take it away and he won't be the same kid, and we love this kid.  The thing that we hope will change will be the way we respond to him.  We are going to do our best to not allow ASD to be an excuse to stop living our lives the way we want to or to lower our expectations of Jordy and how he behaves and responds to others.  And, as always, we hope to equip Jordan and ourselves with the tools and knowledge to assist him in achieving his full potential.  

There is a lot still to do, I will be dropping by the local office of the Ministry of Children and Family Development (MCFD) this week to submit our Application for Autism Funding and once we do that we can start to get Jordan into some additional programs to support his social development and get ourselves a little extra education perhaps.  Time is of the essence, as once Jordy turns six in May the funding drops from roughly $1,800 a month to just $500 (technically the other $1300 goes straight to his school so he still gets the full benefit of the $1800 each month).  Wow! Can I take a moment right now to say I am very thankful to be living in BC and eligible for this funding for our child?!  Thank you, to my fellow British Columbian tax-payers! After setting the wheels in motion with MCFD, I will get us registered with Autism Community Training (ACT) and Canucks Autism Network (CAN) to see what kinds of exciting and informative things we can sign our family up for.  We will also be considering additional services though CHSC already provides a lot of things like Occupational Therapy and Speech Therapy.  I imagine that another summer social development camp may be in Jordan's future as well.  There is much to do, lots to learn and likely a whole jumble of things that haven't occurred to us yet.

At the end of the day, what Chris and I want for both our children is for them to be good human beings, and for them to find a place in this world where they belong and can be happy.  We want to provide them both with cheerful childhoods, full of fun memories and as much love as we can give.  These dreams we have for them aren't too much to ask, I think. Yes, there have been some days when we have wondered whether we really can provide them all.  But, most days we still think, You know, Jordan is going to be all right! 

Chris and I are going to be the parents we always have been: not the kind to linger too long over why? but press ever forward hoping to arm ourselves with as much information and resources as possible and prepared to advocate for Jordan's needs.  And of course, we will love him a little more every day, because even when it's very tough to do so, we manage it somehow.  Another piece of the puzzle has fallen into place  We still can't see what picture will be revealed when it's all done, but as Shel said, nothing has more possibilities....