The verdict is in....
Well it has been FOUR weeks now since we participated in the 'complex behavioural assessment' and I am finally at the point where I can talk about it without crying, so it is time to journal out some thoughts. At the conclusion of the assessment, Rylan was diagnosed with Autism Spectrum Disorder. Rylan has ASD. We officially are a family with a "special needs child". Our child is autistic.
My heart is broken for my beautiful little boy that now has this ASD label attached to his identity, forever. The diagnosis changes everything for our family. And yet it changes nothing. At the end of the day, Rylan is still Rylan. He has ALWAYS marched to his own beat, and he always will. He's just Rylan. He is one of the most remarkable little people I've ever met. We have managed with the challenges he's presented us to this point, and we will continue to manage as best as we can-- perhaps better with even more outside support now.
Receiving the official label has been a LOT to process. There has been LOTS of discussion these past few weeks with friends, family, co-workers, other parents, teachers, and professionals. Lots of tears on my part. And yet, receiving the label is not a surprise to me, at all. I've known since he was young, very young, like well under a year, that there is something different about Rylan. I started seriously questioning and investigating autism when Rylan was only 15 months old. In fact, I looked back in my emails and found one I sent to a friend in August 2008. This friend is a teacher and had looked after Rylan for a couple of months when I went back to work and did not have his daycare spot yet. Snipets of what I said to her in that email exchange:
When we're at home I always think my child is WONDERFUL but then when
we're at a playdate like the past few, I can't help but notice that
Rylan is quite different from other kids. Like what I mentioned
today, his tendency to get super focused on a particular activity for
quite long periods of time, for his age. It *could* be a good thing,
or it could possibly not be, depending on what it means, and what he
uses it for in the future (for good or evil-- ha ha)..
But more and more as he develops, I am starting to get a feeling that
he's a little different and that it means something. For example,
like not doing major gross motor tasks until later (eg. only kid not
climbing yet), occassionally REALLY agressive and actively seeking to
bite in certain moods, as you've seen, when other kids this age rarely
use biting others to express frustration. He's also not so attached
to his momma, unlike most kiddos of this age, and so on. I'm not
going to worry about it too much yet, as things will unfold
eventually. But I do want to listen to that niggling little feeling
I'm getting, in case he does "have something" that we could
acknowledge and work with it sooner rather than later.
I was just looking at some of the early signs of autism. If you have
a chance, please have a look at this some time
http://www.bridges4kids.org/articles/1-03/EP12-02.html and let me
know if you can see this applying to Rylan. Some of it does apply to
him, but then certain aspects could probably apply to any kid... ug.
I am a worrywart by nature, but my intuition is talking to me here...
I just want to make sure that if Rylan has "something" that we
recognize it.
I have always had this little intuitive voice from when
he was little telling me that he's got some interesting quirks that
may or may not turn out to be more than just quirks. Like you know
how when you pick him up, he puts his elbow into your chest to propel
himself to face out, rather than stay cuddled into the adult? The new
daycare caregiver, Lori, says that she has never seen a child turn
away from people like that. In 30 years of caring for children, this
is the first time she's seen it?? Then I doubt my intuition, thinking
that it could be my deep-seeded "concern" with having a boy in the
first place. Back when I found out at our 18 week ultrasound, I
immediately thought of all the kids I've worked with-- always had an
easy time with the girls, but the boys, not so much. Most of the boys
I've worked with seem to have ADD or ADHD or other difficult/demanding
behaviours that I just don't enjoy working with... So part of me
worries that I'm focusing on Rylan's unique quirks as my general bias
against boys. Isn't that terrible?? I'd never want to not accept my
child for who he is!
That site was only one I looked at. Others had other markers to watch
for, and Rylan does meet some of the critera, such as--
Selective interest in food. **uh huh, to say the least
Loses language or developmental skills (had it in the past, but now
he/she doesn't have it). ***This one stands out in that he knew how
to climb stairs at 11.5 and 12 months, by 13 months he no longer
could/would. He still doesn't climb anything...
Lack of simple gestures, such as waving, by 12 months. **he didn't
wave or clap or do any signs until a few weeks after his first
birthday... but close...
Inability to say single words by 16 months. **he'll be 16 months in a
week or two, and still doesn't say any words consistently. He's said
'hi' and even 'hi daddy' once, but never again. He likes to try to
say the word "fish", but that's about it.
Here's more for 12 to 24 months, a few of which really apply to him--
********************************************************************************
Difficulty consoling during transitions (tantrums)
Difficulty sleeping / wakes at night.
Does not "Point and Look"
Failure to Bond (i.e. child is indifferent to parents' presence)
Reaction to vaccines
Self restricted/selected diet
Limited imaginative play
Not interested in playing with other children
chronic gastrointestinal problems
May not enjoy cuddling or being touched unless on own terms.
Anyway, all that just to point out that I had been quite concerned with my little guy pretty much from the get-go. (I started feeling concerned right at that 18-week ultrasound when I found out he was a boy! I can't say what that feeling was that early, but there was a scared feeling that I couldn't shake even as I fell more in love with the idea of HIM as the pregnancy progressed.) I found a video in my FB timeline that I posted when he was 12.5 months pointing out that he had been absolutely OBSESSED with wheels since he was 8 months old. In the video he was just over a year old, and yet he sat for over 30 minutes at a time spinning the wheels of the bike trailer we were storing in our entrance way. In that blurb I wrote that I wondered if I should be worried about that obsessive wheel spinning. Down the road, I remember going to his daycare provider just before his second birthday and bursting into tears as I asked her if she thought he could be autistic. At the time she assured me that I was worrying over the 'little things' and that although Rylan had a lot of quirks, he was doing fine. Then our family doctor dismissed my concerns during his 2-year check-up. Same thing at his 3-year check-up. Almost EVERYONE dismissed my concerns about Rylan when I voiced them over these past four years, most especially my husband. I often thought maybe I was just being too doomsday about the little things, and yet that feeling never went away... Finally at 4 when I went into my doctor with my list, I convinced her to refer us to the Early Intervention Program (EIP). Then when the EIP speech therapist assigned to us recommended we get Rylan assessed for ASD, I completely freaked out. Having an early interventionist actually clearly identify his deficits and tell me he needed the assessment really brought his differences to the forefront. His first year of preschool *really* emphasized how far behind his peers he was in some areas. And it gutted me. I didn't want to deal with it, but also knew that we must get on it.
Our involvement with the Queen Alexandra Early Intervention Program these past nine months has been a super positive experience. I only wish we'd started with them sooner :( But I can't change that piece now, so I'm working on letting go of the 'coulda/shoulda/woulda'. We've had awesome EIP staff working with us. Rylan has spent numerous sessions with an SLP and both his expressive and receptive language have improved a LOT. OT has been working with him on his delayed fine motor skills and there has also been lots of improvement there. We've seen that once we break things down for Rylan into small steps and use lots of visuals, he can and does learn. He also did "food school" for two months and really learned to relax a lot more around food and see it as a source of fun and exploration (rather than just eating to survive). His limited food repertoire has expanded quite a bit this past year... He's still taking iron supplements and is still quite small for his age (only 34 pounds and 40.5 inches- both 10th percentile), but I feel hopeful that he will grow as he needs to.
This past year, Rylan has actually done very well, in many ways. Four has been his easiest year so far. WAY less tantruming and way less difficulties with transitions, sensory issues, and the like. The switch from the very structured 'Kindergarten readiness" preschool he attended last year to the co-op preschool with the free-play model this year has been a smart move. "Free play" is MUCH more his style... Rylan loves his preschool and has so far successfully managed the Mon/Wed/Fri 9:00-12:00 all year without any extra in-class support. He's only missed a couple days of preschool for vacation and his ASD assessment, no other illnesses or avoidances. Doing my parent duty days in the class, I see and hear that Rylan does need lots more redirection and intervention from adults to keep him focused at the tasks at hand, but the teacher says that he holds his own just fine. He often needs help to maintain appropriate social boundaries (and not be all over other kids and in their faces), but he actually has friends and is generally well liked. He seems to enjoy his swimming lessons, gymnastic classes, and more recently skating lessons. He is not at all athletic though and just half-heartedly participates in his flighty manner, so "progress" is extremely slow (e.g. it took him FIVE sessions, of multiple classes each, to pass one swim level). I pulled him from the hour-long gym class he was in and put him in a younger class only 45 minutes long that he seems to manage better. Paying attention to directions and concentrating to complete things is tough for him. As long as he still enjoys these kinds of activities and benefits from them physically, socially, and emotionally, they are worth the investment of time, money, and energy from all of us.
To receive the diagnosis, kids have to have symptoms in three major areas: 1) social relationships; 2) understanding and use of language; 3) Repetitive patterns of activities and restrictive interests. Going into the final meeting, I was actually a bit on the fence if we'd get the ASD label or not, as Rylan has improved so much and shows so much potential with social relationships, but his history and what he displayed during the assessment count for enough, apparently. That is why it is called a "spectrum". He's definitely high functioning on that spectrum and has many strengths to build upon....
So, Autism Spectrum Disorder. Where do we go from here? Well thankfully (?) ASD is kind of a highlighted area of government support and intervention at the moment, so now that we have the label, we can make use of the Canadian government's "Autism Funding". Under the age of 6, the funding is extensive-- up to $22 000 per year. Over six that goes down to $6000 a year as most intervention switches to the school system. So basically we have one year to make the most of the intervention services and help Rylan catch up to his peers as much as possible. We are being phased out of the QA Early Intervention Program and must quickly put together our own private service treatment team. It is VERY overwhelming. We have interviewed two agencies so far and have yet to look at private individual therapists. We have a Children and Youth with Special Needs social worker that I am meeting with later this week to help us make the decision. (This SW works out of the same MCFD office I work out of for child protection-- very strange to me.) If we go with one of the two agencies, Rylan will likely have two play sessions each week with a "Behaviour Interventionist" that will work with him to carry out individual therapy goals identified by the Behavioural Consultant, SLP, and OT that are part of the agency. He will also have one social skills playgroup her week. That means we are going to be very, very busy. It's a good thing I've only gone back to work part-time (2.5 days per week). At the moment, I feel quite overwhelmed. I haven't yet joined the local autism network, or even done much reading on ASD. It just fatigues my head. And I don't want Ariana and her needs to get lost in this shuffle...
My heart is broken for my beautiful little boy that now has this ASD label attached to his identity, forever. The diagnosis changes everything for our family. And yet it changes nothing. At the end of the day, Rylan is still Rylan. He has ALWAYS marched to his own beat, and he always will. He's just Rylan. He is one of the most remarkable little people I've ever met. We have managed with the challenges he's presented us to this point, and we will continue to manage as best as we can-- perhaps better with even more outside support now.
Receiving the official label has been a LOT to process. There has been LOTS of discussion these past few weeks with friends, family, co-workers, other parents, teachers, and professionals. Lots of tears on my part. And yet, receiving the label is not a surprise to me, at all. I've known since he was young, very young, like well under a year, that there is something different about Rylan. I started seriously questioning and investigating autism when Rylan was only 15 months old. In fact, I looked back in my emails and found one I sent to a friend in August 2008. This friend is a teacher and had looked after Rylan for a couple of months when I went back to work and did not have his daycare spot yet. Snipets of what I said to her in that email exchange:
When we're at home I always think my child is WONDERFUL but then when
we're at a playdate like the past few, I can't help but notice that
Rylan is quite different from other kids. Like what I mentioned
today, his tendency to get super focused on a particular activity for
quite long periods of time, for his age. It *could* be a good thing,
or it could possibly not be, depending on what it means, and what he
uses it for in the future (for good or evil-- ha ha)..
But more and more as he develops, I am starting to get a feeling that
he's a little different and that it means something. For example,
like not doing major gross motor tasks until later (eg. only kid not
climbing yet), occassionally REALLY agressive and actively seeking to
bite in certain moods, as you've seen, when other kids this age rarely
use biting others to express frustration. He's also not so attached
to his momma, unlike most kiddos of this age, and so on. I'm not
going to worry about it too much yet, as things will unfold
eventually. But I do want to listen to that niggling little feeling
I'm getting, in case he does "have something" that we could
acknowledge and work with it sooner rather than later.
I was just looking at some of the early signs of autism. If you have
a chance, please have a look at this some time
http://www.bridges4kids.org/articles/1-03/EP12-02.html and let me
know if you can see this applying to Rylan. Some of it does apply to
him, but then certain aspects could probably apply to any kid... ug.
I am a worrywart by nature, but my intuition is talking to me here...
I just want to make sure that if Rylan has "something" that we
recognize it.
I have always had this little intuitive voice from when
he was little telling me that he's got some interesting quirks that
may or may not turn out to be more than just quirks. Like you know
how when you pick him up, he puts his elbow into your chest to propel
himself to face out, rather than stay cuddled into the adult? The new
daycare caregiver, Lori, says that she has never seen a child turn
away from people like that. In 30 years of caring for children, this
is the first time she's seen it?? Then I doubt my intuition, thinking
that it could be my deep-seeded "concern" with having a boy in the
first place. Back when I found out at our 18 week ultrasound, I
immediately thought of all the kids I've worked with-- always had an
easy time with the girls, but the boys, not so much. Most of the boys
I've worked with seem to have ADD or ADHD or other difficult/demanding
behaviours that I just don't enjoy working with... So part of me
worries that I'm focusing on Rylan's unique quirks as my general bias
against boys. Isn't that terrible?? I'd never want to not accept my
child for who he is!
That site was only one I looked at. Others had other markers to watch
for, and Rylan does meet some of the critera, such as--
Selective interest in food. **uh huh, to say the least
Loses language or developmental skills (had it in the past, but now
he/she doesn't have it). ***This one stands out in that he knew how
to climb stairs at 11.5 and 12 months, by 13 months he no longer
could/would. He still doesn't climb anything...
Lack of simple gestures, such as waving, by 12 months. **he didn't
wave or clap or do any signs until a few weeks after his first
birthday... but close...
Inability to say single words by 16 months. **he'll be 16 months in a
week or two, and still doesn't say any words consistently. He's said
'hi' and even 'hi daddy' once, but never again. He likes to try to
say the word "fish", but that's about it.
Here's more for 12 to 24 months, a few of which really apply to him--
********************************************************************************
Difficulty consoling during transitions (tantrums)
Difficulty sleeping / wakes at night.
Does not "Point and Look"
Failure to Bond (i.e. child is indifferent to parents' presence)
Reaction to vaccines
Self restricted/selected diet
Limited imaginative play
Not interested in playing with other children
chronic gastrointestinal problems
May not enjoy cuddling or being touched unless on own terms.
Anyway, all that just to point out that I had been quite concerned with my little guy pretty much from the get-go. (I started feeling concerned right at that 18-week ultrasound when I found out he was a boy! I can't say what that feeling was that early, but there was a scared feeling that I couldn't shake even as I fell more in love with the idea of HIM as the pregnancy progressed.) I found a video in my FB timeline that I posted when he was 12.5 months pointing out that he had been absolutely OBSESSED with wheels since he was 8 months old. In the video he was just over a year old, and yet he sat for over 30 minutes at a time spinning the wheels of the bike trailer we were storing in our entrance way. In that blurb I wrote that I wondered if I should be worried about that obsessive wheel spinning. Down the road, I remember going to his daycare provider just before his second birthday and bursting into tears as I asked her if she thought he could be autistic. At the time she assured me that I was worrying over the 'little things' and that although Rylan had a lot of quirks, he was doing fine. Then our family doctor dismissed my concerns during his 2-year check-up. Same thing at his 3-year check-up. Almost EVERYONE dismissed my concerns about Rylan when I voiced them over these past four years, most especially my husband. I often thought maybe I was just being too doomsday about the little things, and yet that feeling never went away... Finally at 4 when I went into my doctor with my list, I convinced her to refer us to the Early Intervention Program (EIP). Then when the EIP speech therapist assigned to us recommended we get Rylan assessed for ASD, I completely freaked out. Having an early interventionist actually clearly identify his deficits and tell me he needed the assessment really brought his differences to the forefront. His first year of preschool *really* emphasized how far behind his peers he was in some areas. And it gutted me. I didn't want to deal with it, but also knew that we must get on it.
Our involvement with the Queen Alexandra Early Intervention Program these past nine months has been a super positive experience. I only wish we'd started with them sooner :( But I can't change that piece now, so I'm working on letting go of the 'coulda/shoulda/woulda'. We've had awesome EIP staff working with us. Rylan has spent numerous sessions with an SLP and both his expressive and receptive language have improved a LOT. OT has been working with him on his delayed fine motor skills and there has also been lots of improvement there. We've seen that once we break things down for Rylan into small steps and use lots of visuals, he can and does learn. He also did "food school" for two months and really learned to relax a lot more around food and see it as a source of fun and exploration (rather than just eating to survive). His limited food repertoire has expanded quite a bit this past year... He's still taking iron supplements and is still quite small for his age (only 34 pounds and 40.5 inches- both 10th percentile), but I feel hopeful that he will grow as he needs to.
This past year, Rylan has actually done very well, in many ways. Four has been his easiest year so far. WAY less tantruming and way less difficulties with transitions, sensory issues, and the like. The switch from the very structured 'Kindergarten readiness" preschool he attended last year to the co-op preschool with the free-play model this year has been a smart move. "Free play" is MUCH more his style... Rylan loves his preschool and has so far successfully managed the Mon/Wed/Fri 9:00-12:00 all year without any extra in-class support. He's only missed a couple days of preschool for vacation and his ASD assessment, no other illnesses or avoidances. Doing my parent duty days in the class, I see and hear that Rylan does need lots more redirection and intervention from adults to keep him focused at the tasks at hand, but the teacher says that he holds his own just fine. He often needs help to maintain appropriate social boundaries (and not be all over other kids and in their faces), but he actually has friends and is generally well liked. He seems to enjoy his swimming lessons, gymnastic classes, and more recently skating lessons. He is not at all athletic though and just half-heartedly participates in his flighty manner, so "progress" is extremely slow (e.g. it took him FIVE sessions, of multiple classes each, to pass one swim level). I pulled him from the hour-long gym class he was in and put him in a younger class only 45 minutes long that he seems to manage better. Paying attention to directions and concentrating to complete things is tough for him. As long as he still enjoys these kinds of activities and benefits from them physically, socially, and emotionally, they are worth the investment of time, money, and energy from all of us.
To receive the diagnosis, kids have to have symptoms in three major areas: 1) social relationships; 2) understanding and use of language; 3) Repetitive patterns of activities and restrictive interests. Going into the final meeting, I was actually a bit on the fence if we'd get the ASD label or not, as Rylan has improved so much and shows so much potential with social relationships, but his history and what he displayed during the assessment count for enough, apparently. That is why it is called a "spectrum". He's definitely high functioning on that spectrum and has many strengths to build upon....
So, Autism Spectrum Disorder. Where do we go from here? Well thankfully (?) ASD is kind of a highlighted area of government support and intervention at the moment, so now that we have the label, we can make use of the Canadian government's "Autism Funding". Under the age of 6, the funding is extensive-- up to $22 000 per year. Over six that goes down to $6000 a year as most intervention switches to the school system. So basically we have one year to make the most of the intervention services and help Rylan catch up to his peers as much as possible. We are being phased out of the QA Early Intervention Program and must quickly put together our own private service treatment team. It is VERY overwhelming. We have interviewed two agencies so far and have yet to look at private individual therapists. We have a Children and Youth with Special Needs social worker that I am meeting with later this week to help us make the decision. (This SW works out of the same MCFD office I work out of for child protection-- very strange to me.) If we go with one of the two agencies, Rylan will likely have two play sessions each week with a "Behaviour Interventionist" that will work with him to carry out individual therapy goals identified by the Behavioural Consultant, SLP, and OT that are part of the agency. He will also have one social skills playgroup her week. That means we are going to be very, very busy. It's a good thing I've only gone back to work part-time (2.5 days per week). At the moment, I feel quite overwhelmed. I haven't yet joined the local autism network, or even done much reading on ASD. It just fatigues my head. And I don't want Ariana and her needs to get lost in this shuffle...