If you are from BC Canada and need some help with your autistic or FAS child or young adult, contact Sources! (previously Gateway). What a wonderful program!
Jodi arrived with a binder filled with excellent information, from a list of all the books I am welcome to borrow from the Sources library (which I certainly will be doing), a comprehensive layout of the services her organization offers, to amazingly in depth set of paperwork to fill out (heeeee! More paperwork! sigh) that will help us to identify areas in which NSLM could use some intervention. My not so long list is a bit longer now, but it now includes minor details such as "note to self: Find a science club, invention club or even a capable adult who will start one."
Jodi spent two hours here, will do the same with my ex-husband in his home, and then will be back every two weeks for a few months (at least). She will take all our filled out forms and the data within, and then she will show me how to design an intervention plan for target areas. More importantly, she will show me how to track the success (or not) of our intervention. How exciting is that?
She is even going to help me educate the local RCMP a wee bit, by creating an information flier for them about my child.
So excited!
Monday
Meeting today!
So, today is the day a coworker worker from Sources is coming to teach me how to plan a behavior intervention and how to execute that plan for "Not So Little Man". I have, as she requested, created a list of short-term and long-term behaviors that I would like to focus on. It's not a very long list.
Holding this one sheet of paper, and it's meager contents, I cannot help but compare this list to the list I had when "Not So Little Man" was five years old. It's interesting,that now, when is in his teens, that there are less behaviors to worry about, yet in my mind they are more worrisome.
People expect great things from him. They're angry when he does not make eye contact. His peers don't recognize or reason as to why he's ignoring their overtures. Teachers can assume that his echolia combined with his excessive use of sarcasm is akin to sassing. Because "Not So Little Man" has worked so hard, and received so many interventions, it is less obvious than "Not So Little Man" has a disability. So the very gains that we worked so hard to achieve, at this point and time, or biting us on our proverbial butts.
One of my best friends also has a child who is ASD, previously known as Asperger's. Recently we were talking about this upcoming visit with a worker from Sources. I was also talking about the buttons of fliers that I obtained to put on the board of the college for world autism awareness month. My friend, in the midst of this conversation, made a comment about how she does not advocate for her son at the same level that I advocate for mine. She also made mention that she was not up-to-date with the autism community, news about autism, visual training, new therapies, pseudo scientific therapies and so forth. I don't how other people feel, but it makes me very uncomfortable when other people talk as if what I'm doing is noteworthy. That being said, her words were startling. She's a very active parent. She is often at the school demanding better services and accommodations for her son, finding therapists, and a multitude of other things that parents do. Not ever have I looked at her outlook on autism and felt superior, or felt that she was lacking. I think that every parent has their own way to advocate for their children. I certainly hope that I have never given the impression that I feel other parents are not doing enough for their children.
Regardless, we were discussing my short list of behaviors and the more important topic of how people expect our sons will have all the skills and behaviors that a typical child their age has. I know every child of spectrum is different-I love that phrase, “if you've met one autistic person, then you've met one autistic person." Yet this is a complaint I've heard of, and read about quite often. Sometimes this is a matter of the people around your child ( my child), not having an understanding for what autism means for that child. I understand that learning what autism is is a continuous process. But as per school district protocol, all adults are required to receive autism specific training prior to being involved with any ASD student.
On the plus side, "Not So Little Man" has some wonderful people working with him this year. Although his EA is excellent, due to the social stigma associated with having an EA, "Not So Little Man" is working very hard towards more independence within the school. This is very exciting to me, as it is the time when "Not So Little Man" himself is learning to advocate for himself. He is starting to recognize strengths and weaknesses, which I think is of invaluable experience.
It is my hope that once Jody leaves today, I too will have an invaluable experience. It's great that there's always therapists about, able to direct, train, and intervene with my son, but I need the tools with which to teach "Not So Little Man" himself to direct, train, and intervene with his own behaviors. Anyways this was not supposed be a rant, I just wanted to share my excitement with the upcoming meeting. I will check back in later.
*Dictated with Dragon.
Thursday
All those expensive therapies...
I have been grumping for many years about all the online complaining from parents of children with autism: "Poor ME! Ruined my life! It's So HARD! It costs so much money! I ended up divorced!" It goes on and on and rarely fails to startle me-because while I get it, I just. Don't. Get. It.
That being said, I came to a few conclusions after reading a few of the blogs, newspaper posts and comments to both this month (Being that it is Autism Awareness Month there are a great deal more posts that are easily found).
Here's my take on the differences:
Many parents are horrified by the costs that come with autism.
These costs have not effected me, because NSLM's assessments were by the school and later referrals from the professionals working for him so I paid nothing. . All 'mainstream' therapies (speech therapy, Behaviour Analyst, Behaviour Interventionist, Play Therapist, Educational Assistant) and tools (Books on teaching Social Skills, books on autism, videos on autism and social skills, cowriter, dragon dictate, comic lite, laptop etc) and training (conferences, classes etc for myself and any other adult working with NSLM) is covered by his funding (both his Ministry funding and by his School District funding.)
Welcome to Canada! HOWEVER, woo and pseudo science is not covered.. (naturpathic, lupron, chelation, hbot, gfcf, homeopathic FC etc.) I did pay for one year of speech therapy myself, before we got NSLM's diagnosis straightened out.
So I guess for parents finding themselves having to pay out of pocket, particularly if they are paying the outrages prices for 'alternative' measures, it would be horrific.
Many of the parents posting talk about all the time needed to run their children to all these appointments, the cost of those appointments, resulting missed work and travel costing hundreds of thousands of dollars.
Prior to school, I am the one that taught NSLM all his social cues, made visuals etc. I read books, scoured online (recommended websites as per the autism team) and did what I was taught and did what worked.
When NSLM started school, all those therapists came to him at school. I was also blessed in that my then husband was able to support our family while I attended school with NSLM (K-4). We didn't have much ( I still don't have much, lol), but we had a roof, food and clothing so it was all good.
I read parents complaining that they 'gave up their lives' for their autistic child. I gave up a great deal of freedom that childless adults have so that I could have the joy of being a mother. I made that choice. I was never angry to be a stay at home mom. I was thrilled! I might have been easier to not do all the hard parts, but I am grateful that I was able to be at home for all the good parts, and to do all the teaching.
I imagine, if I lived somewhere where all these therapies came out of my pocket I might be a little (lot) cranky. But...Well... I still can't but help but think about what I would do if my NT child was...say... a somewhat gifted (or interested even) singer...OH WAIT!! She is, and I drive her all over, I pay HUGE amounts of money for lessons, equipment and MEGA personal sacrifice to support her talent-because I thought that was part of what I signed up for when I chose to be a parent. When NSLM decided he wanted to learn drums, I found a way! He is now the owner of a fine set of drums with weekly lessons. When my oldest wanted to play hockey, I cringed... but we would have figured it out... because that is just a part of parenting. Finding a way.
So I get it, sorta. Many of the parents that are complaining are from countries where therapists are not covered. I get that, truly I do. I can't imagine the struggle to pay the $150 hour for each of those therapists, at 2-6ish hours per week needed. I would have had to learn to be NSLM's speech therapist too, I guess. Having seen how dramatics varied the options are from country to country I am wishing we could divert all that funding that goes to the autism/vaccine research into funding for therapies....
That being said, I came to a few conclusions after reading a few of the blogs, newspaper posts and comments to both this month (Being that it is Autism Awareness Month there are a great deal more posts that are easily found).
Here's my take on the differences:
Many parents are horrified by the costs that come with autism.
These costs have not effected me, because NSLM's assessments were by the school and later referrals from the professionals working for him so I paid nothing. . All 'mainstream' therapies (speech therapy, Behaviour Analyst, Behaviour Interventionist, Play Therapist, Educational Assistant) and tools (Books on teaching Social Skills, books on autism, videos on autism and social skills, cowriter, dragon dictate, comic lite, laptop etc) and training (conferences, classes etc for myself and any other adult working with NSLM) is covered by his funding (both his Ministry funding and by his School District funding.)
Welcome to Canada! HOWEVER, woo and pseudo science is not covered.. (naturpathic, lupron, chelation, hbot, gfcf, homeopathic FC etc.) I did pay for one year of speech therapy myself, before we got NSLM's diagnosis straightened out.
So I guess for parents finding themselves having to pay out of pocket, particularly if they are paying the outrages prices for 'alternative' measures, it would be horrific.
Many of the parents posting talk about all the time needed to run their children to all these appointments, the cost of those appointments, resulting missed work and travel costing hundreds of thousands of dollars.
Prior to school, I am the one that taught NSLM all his social cues, made visuals etc. I read books, scoured online (recommended websites as per the autism team) and did what I was taught and did what worked.
When NSLM started school, all those therapists came to him at school. I was also blessed in that my then husband was able to support our family while I attended school with NSLM (K-4). We didn't have much ( I still don't have much, lol), but we had a roof, food and clothing so it was all good.
I read parents complaining that they 'gave up their lives' for their autistic child. I gave up a great deal of freedom that childless adults have so that I could have the joy of being a mother. I made that choice. I was never angry to be a stay at home mom. I was thrilled! I might have been easier to not do all the hard parts, but I am grateful that I was able to be at home for all the good parts, and to do all the teaching.
I imagine, if I lived somewhere where all these therapies came out of my pocket I might be a little (lot) cranky. But...Well... I still can't but help but think about what I would do if my NT child was...say... a somewhat gifted (or interested even) singer...OH WAIT!! She is, and I drive her all over, I pay HUGE amounts of money for lessons, equipment and MEGA personal sacrifice to support her talent-because I thought that was part of what I signed up for when I chose to be a parent. When NSLM decided he wanted to learn drums, I found a way! He is now the owner of a fine set of drums with weekly lessons. When my oldest wanted to play hockey, I cringed... but we would have figured it out... because that is just a part of parenting. Finding a way.
So I get it, sorta. Many of the parents that are complaining are from countries where therapists are not covered. I get that, truly I do. I can't imagine the struggle to pay the $150 hour for each of those therapists, at 2-6ish hours per week needed. I would have had to learn to be NSLM's speech therapist too, I guess. Having seen how dramatics varied the options are from country to country I am wishing we could divert all that funding that goes to the autism/vaccine research into funding for therapies....
Tuesday
NSLM and the suprising artistic talent
This will have to be a quick post, because I need to study for my exam tomorrow...But today, when I went to the middle school, NSLM's teacher showed me this:
This is really impressive, as we had no idea he could draw like this! And interestingly enough, the puzzle piece is a coincedence and nothing to do with autism. :)
Worksafe investigation into Langley BC autistic student...wtf
There is a rather interesting article HERE concerning the autistic boy in Langley BC who was told he cannot attend school.
Turns out WORKSAFE BC was involved when a teacher made a complaint to them, alleging that there were 'over 16 physical altercations between students and teachers". As alarming as that may sound, no one seems to be able to say if those altercations involve the boy in question or not and the school is not allowing the parents access to their child's school file.
WorkSafe BC is a wonderfully proactive but immersed in politics organization that provides safety guidelines for businesses and workers. I understand that any business can be 'autidited' as well. All well and good, but I am uncertain as to how they have the ability to deny a child schooling.
As someone who has spent many years volunteered in the school, I am also aware that there are many more altercations in elementary school than most parents realize. Unless your child is involved, you are not likely to be informed. (Although it sounds as if the parents of the Langley child were NOT informed of any physical altercations, which begs the question: Why were they not involved or informed?) Most of those altercations are with the typical student, not with a child with ASD. Yet the article implies that the lack of training that the teachers receive on how to 'deal with' autistic children is why this particular child has been ousted.
As a parent of an ASD child who resides in BC I am startled that the teachers do not have any ASD training, as our teachers here do. I am horrified by the idea of my son being involved in an altercation with a teacher and my not being informed. The knowledge that a BC school is denying this child entry is terrifying.
I really wonder what the outcome will be, how much what is being shared publicly is accurate and what is being left out.
Hugs and Laughter to my school for not doing this to me.....
Turns out WORKSAFE BC was involved when a teacher made a complaint to them, alleging that there were 'over 16 physical altercations between students and teachers". As alarming as that may sound, no one seems to be able to say if those altercations involve the boy in question or not and the school is not allowing the parents access to their child's school file.
WorkSafe BC is a wonderfully proactive but immersed in politics organization that provides safety guidelines for businesses and workers. I understand that any business can be 'autidited' as well. All well and good, but I am uncertain as to how they have the ability to deny a child schooling.
As someone who has spent many years volunteered in the school, I am also aware that there are many more altercations in elementary school than most parents realize. Unless your child is involved, you are not likely to be informed. (Although it sounds as if the parents of the Langley child were NOT informed of any physical altercations, which begs the question: Why were they not involved or informed?) Most of those altercations are with the typical student, not with a child with ASD. Yet the article implies that the lack of training that the teachers receive on how to 'deal with' autistic children is why this particular child has been ousted.
As a parent of an ASD child who resides in BC I am startled that the teachers do not have any ASD training, as our teachers here do. I am horrified by the idea of my son being involved in an altercation with a teacher and my not being informed. The knowledge that a BC school is denying this child entry is terrifying.
I really wonder what the outcome will be, how much what is being shared publicly is accurate and what is being left out.
Hugs and Laughter to my school for not doing this to me.....
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