So, my respite worker quit. She was great, but needed more hours, and I can appreciate that.
So, I went to the Autism Winnipeg Facebook page to see if anyone knew of anyone that would be interested in helping me out for some extra cash. And lo and behold... an angel heard my prayer.
Lisa responded to my post within minutes. I saw her green hair and thought 'wow, spunky little thing isn't she?' This is exactly the kind of person I need for Dayton, someone with spunk and not shy. Dayton eats shy for breakfast, and is never quite full, kind of like chinese food. Within an hour, he's hungry again, and I pity the shy one working with him.
The day before our interview, Lisa text messages me explaining that her hair is now blue, and that she is willing to change her hair color if I think Dayton would freak out. Awwww... what a sweetie! My immediate response was NO WAY! Dayton's wanted to die his hair blue, but because he's still in elementary school, I won't do it. The kid's got enough problems with his teachers, let's not add more fuel to the fire. But summer is coming, and I'll let him so what he wants with his hair. Maybe Lisa can help me with that. I have no idea how to get the bright shade of blue her hair is now, and to be honest, while I may be conservative, it kind of looks cool!
The best part about this new respite worker is... wait for it... drum roll please... Lisa has Asperger's. How blessed am I? My babe is going to have someone looking after him that understands the way he thinks, that could affectively help him with some coping strategies, someone who truly 'gets him.'
I've been thinking about PACE, and how to make it encompass more for our kids. One of my thoughts on the morning of meeting Lisa for the first time was to find successful young adults on the autism spectrum to mentor our young ones. Lisa totally fits this criteria. She works at Canadian Tire, and writes THREE blogs: http://vibrant-oxymoron.blogspot.ca/, http://yeht.blogspot.ca/ and http://bitterambiguity.blogspot.ca/. Just writing one blog can be tiring, I can't imagine having three!!!
Take a look at her reference letter:
"Notes:
I have not officially been "employed" to care for a person with autism, however my sister was diagnosed at a young age. I have lived my life assisting with her upbringing and continue to care for her when it comes to the self injurious behaviour and melt downs that she has exhibited from a very young age. She also processes feelings differently, such as temperature or pain. I am quite familiar with several people on the autism spectrum, and have great insight when it comes to the way that the autistic mind works. Needless to say, no two people with autism perceive the world in an identical way - for the most part, however, I have found that the key is simple logic, and explanations which are delivered in such a way that the connotation of the words cannot be mistaken. It is often I who am called upon to deal with a particular customer at the place in which I work, who has no conception of monetary value, and whom people believe acts "strangely." When I noticed him initially, I could tell that he was distressed when attempting to communicate with the cashier. After the cashier too became distressed - after attempting to explain to him that he could not afford his item, and him not quite understanding what she was trying to convey - I approached him and explained the situation to him, in a way that he promptly understood. I later explained to her and the other cashiers the reason for his atypical movements and speech patterns, as well how to deal with him in a more effective manner if he were to come through their till. I have since served him many times, and we get along notoriously.
Although I am uncertain as to the relevance of this fact, it may also interest you to know that I have been diagnosed with Aspergers. Throughout the past six or seven years, however, I have developed a familiarity, if not understanding, of social conventions and behaviours. I have been told that it is very difficult at times to tell that I have Aspergers at all, which is wonderful to hear as I have worked very hard to appear - as society generally views it - "normal." But I digress - I believe that this gives me a unique awareness when it comes to working with those with autism - that, as well as my intensive research into autism spectrum disorders and the implications.
I have also read through the entirety of your blog twice in an attempt to familiarise myself with Dayton and yourself before our meeting. He seems like a wonderful child! I would like to add that I am quite familiar with echolalia (and stubborness) as well, and it has never bothered me in the slightest. I have an abundance of patience. It may also interest you to know that I am a devoted Christian as well.
I derive great joy from working with children in general, and sincerely hope that you will find me sufficient when it comes to caring for Dayton."
I didn't bother calling her reference. I think she's more than qualified.
Lisa, if you're reading this, I am thrilled to have you be a part of our lives. I pray you remain in our lives for a very, very long time.
I'm really feeling good about this.
Consider yourselves hugged,
Lou
Showing posts with label Aspergers. Show all posts
Showing posts with label Aspergers. Show all posts
Thursday, 17 May 2012
Wednesday, 18 May 2011
The Autism Winnipeg Facebook Group
I gotta tell ya... Here I was told by the Children's Coalition that for the majority of the kids on the autism spectrum, the school system is "working well." This does not seem to be the case for many of the parents on the Autism Winnipeg Facebook Group. If the "woman" I spoke to at the Children's Coalition is paying attention to this group, her blood has got to be boiling.
I had originally sought out the Autism Winnipeg Facebook Group for support from other parents, to share what's working with some of our kiddos and what's not. Lately though, I've been getting a lot more out of this group. I asked the group to come out and meet, and I did get to meet three new ladies. Not a huge turnout, but non the less, a turn out it was. Better meeting three parents than none. I got to meet their beautiful children, and finally met Wendy face to face, the autism mom who's been blogging on this blog with her "Raving Series."
What a rush of ideas coming from this facebook group! One of the moms had asked the following question just 13 hours ago: "So if you went to a discussion/questions/comments meeting with all the Societies of Manitoba - including Asperger's/ASM/Mfeat/MATC/etc. what would your questions or concerns be?" In 13 short hours she got 43 responses to the question. What a terrific question!!! I didn't know where to start with my questions!
Another mother had posted: "Letter-Writing Campaign..............EAs are a good start, so therefore it would be the Honourable Minister Nancy Allen. That who the focus needs to be on and why the need." In one short hour, she got 13 responses!
Our own dear Wendy had posted an online survey regarding what parents thought of our education. Here are her results so far: 83.3% have children in the school system, 60% have a special needs child in the school system, 16.7% think inclusion is working and perfect, while a surprising 66.7% think it needs some tweeking. 60% of ppl who answered do have level 3 funding, 50% did think have special needs children in class benefited everyone, very shocking, 100% of people who have taken the survey stated teachers and aids should be fully trained to work with special need training. Thank you everyone who has already taken it, looking forward to future takers.
The online survey was a brilliant idea, and I wish more parents would answer the survey. The survey is completely 100% private, and Wendy has no idea who answered or what their answer was. We're thinking of doing another survey and post it on this blog. I hope for those of you reading Autism Diva Help that you take the time to answer the very short survey as it is confidential, and it would take less than a minute to answer. The intention (once we post it) is to take all this information to the government and the media.
I love the Autism Winnipeg Facebook. During the last couple of weeks, it's been found to be highly interactive, with questions posted getting almost immediate replies. No one is belittled for their beliefs and everyone in the group cares about each other's struggles. We may not all have met face to face, but the care is most evident. Get some autism support!
Thank You Marni Wachs Zuke for creating the Autism Winnipeg Group. Thank you to all the parents contributing to the conversations and posting your opinions and questions. You are all truly amazing parents!
If you're not a member of this group, it's open to the public. Check out Autism Winnipeg and join in the conversations, ask questions, get advice! This group is not only for parents. It's open to grandparents, aunts, uncles, sisters, brothers, cousins, and friends.
Consider yourselves hugged,
Lou
I had originally sought out the Autism Winnipeg Facebook Group for support from other parents, to share what's working with some of our kiddos and what's not. Lately though, I've been getting a lot more out of this group. I asked the group to come out and meet, and I did get to meet three new ladies. Not a huge turnout, but non the less, a turn out it was. Better meeting three parents than none. I got to meet their beautiful children, and finally met Wendy face to face, the autism mom who's been blogging on this blog with her "Raving Series."
What a rush of ideas coming from this facebook group! One of the moms had asked the following question just 13 hours ago: "So if you went to a discussion/questions/comments meeting with all the Societies of Manitoba - including Asperger's/ASM/Mfeat/MATC/etc. what would your questions or concerns be?" In 13 short hours she got 43 responses to the question. What a terrific question!!! I didn't know where to start with my questions!
Another mother had posted: "Letter-Writing Campaign..............EAs are a good start, so therefore it would be the Honourable Minister Nancy Allen. That who the focus needs to be on and why the need." In one short hour, she got 13 responses!
Our own dear Wendy had posted an online survey regarding what parents thought of our education. Here are her results so far: 83.3% have children in the school system, 60% have a special needs child in the school system, 16.7% think inclusion is working and perfect, while a surprising 66.7% think it needs some tweeking. 60% of ppl who answered do have level 3 funding, 50% did think have special needs children in class benefited everyone, very shocking, 100% of people who have taken the survey stated teachers and aids should be fully trained to work with special need training. Thank you everyone who has already taken it, looking forward to future takers.
The online survey was a brilliant idea, and I wish more parents would answer the survey. The survey is completely 100% private, and Wendy has no idea who answered or what their answer was. We're thinking of doing another survey and post it on this blog. I hope for those of you reading Autism Diva Help that you take the time to answer the very short survey as it is confidential, and it would take less than a minute to answer. The intention (once we post it) is to take all this information to the government and the media.
I love the Autism Winnipeg Facebook. During the last couple of weeks, it's been found to be highly interactive, with questions posted getting almost immediate replies. No one is belittled for their beliefs and everyone in the group cares about each other's struggles. We may not all have met face to face, but the care is most evident. Get some autism support!
Thank You Marni Wachs Zuke for creating the Autism Winnipeg Group. Thank you to all the parents contributing to the conversations and posting your opinions and questions. You are all truly amazing parents!
If you're not a member of this group, it's open to the public. Check out Autism Winnipeg and join in the conversations, ask questions, get advice! This group is not only for parents. It's open to grandparents, aunts, uncles, sisters, brothers, cousins, and friends.
Consider yourselves hugged,
Lou
Tuesday, 22 March 2011
I Could If I Would But I Can't
At the core of the problem in today's school system of inclusion is "belief." Our kids on the higher end of the autism spectrum disorder just look too good, therefore they can't possibly have deficits or needs. They're a bunch of spoiled brats who don't pay attention and choose to throw temper tantrums to get out of doing their work. They're a menace to the classroom and are constantly interrupting important lectures. They refuse to fit in with the rest of the kids, and love to physically fight their class mates. This is NOT true. Unfortunately, this is pretty much what the current school system thinks of our kids. They don't BELIEVE that our children are "neurologically different." Our kids can talk, walk, run, and sit just like the rest of the student body. When they don't, the school staff believe that our kids don't do as expected by their own choice.
If our children wore leg braces, you'd have teachers and aids ligning up to help them, there would be no doubt as to their deficits and need for help. People in general are just more apt to believe there's a problem when they can SEE the problem. PDD-NOS is not something you can visually see, neither is high functioning autism or Aspergers. When the problem is visual and obvious, people are just much more likely to HELP. The presence of intelligence, strengths, and actual talents make it even harder for teachers to be believe there are real, concrete deficits.
No parent wants to think of segregating their child. Segregation brings horrible pictures to mind of "No blacks allowed," and "whites only." But the fact of the matter is, our kids are horribly misunderstood. Who's fault is this? Certainly not the parents. Most parents are more than happy to share with their child's school things that work for their children and things that don't. I know I most certainly do. The problem is that the school staff really don't have the time to listen to what I have to say, as I am not an expert on the subject. "They," on the other hand, are well meaning "professionals," who know what my child needs. Their experience and expertise on what works on typical children is what they believe will work for my son. And then they wonder why they have problems...
The most frustrating part of raising a child with a neurological difference, such as autism, aspergers and PDD-NOS, is not the child themselves... it's trying to convince others the enormity of the child's deficits. Deficit areas such as language (understanding rhetorical questions), sensory issues (Dayton can't certain sounds, for example music class is super painful for him, or the feel of new socks), theory of mind (thinking about how another person thinks or why they react they way they do, for example emotions), problem solving, anxiety, consistency in their scheduled days, social skills, play skills, motor issues (Dayton is 9, and he still can't tie his shoes because his fingers can't manipulate the shoe laces), spacial orientation (where the body is in space, for example co-ordination).
If inclusion in our school systems is to work, I think it is vital for them to understand these deficits and BELIEVE them. Their disbelief is not only affecting our children, but the typical children as well. Think about it. If a busy classroom with colorful walls overstimulates my child and he has a melt down, it affects the entire classroom. The one most affected is my child along with me, since he will now be suspended and I have to leave work to go and get him. My boss is not pleased at all the work I am missing and my students also suffer the consequences. When a teacher uses an idiom such as "hold your horses" and my son responds with "what horses?" the teacher automatically assumes Dayton is being disrespectful and sends him to the office. Dayton of course throws a fit because he's answered her question and doesn't understand why he's being sent to the office. I am called to pick him up AGAIN.
By the time I get to the school, Dayton is furious, has punched the walls, pushed teachers and children out of his way because he's super frustrated at trying to understand what he's done wrong and no one is answering him. He feels picked on and not important. In his anger he screams, scaring the children around him.
Here's a perfect example of total and complete miscommunication between school staff and Dayton from last February:
Little Johnny has a hole in his back pack. Dayton sees the hole and he just can't help himself... He sticks his finger in the hole and rips the back pack further. (Impulse control deficit, this is not an excuse, but an explanation as to why he did this). Dayton's teacher and aid are standing across the room watching Dayton do this. The teacher the approaches Dayton and asks him "Dayton, did you rip Johnny's back pack?"
Dayton: "No." (Language deficit. Dayton has answered the question asked truthfully. He is literal. He did not rip the back pack, it was already ripped. Dayton is not able to articulate this).
Teacher: "Yes, yes you did, I watched you do it."
Dayton tries to back away from the teacher, but she follows. In order to get away from her he moves a desk. This is viewed as "aggressive behavior." The aid now approaches Dayton from the other side and the two women figure they can corner him. Can you see where this is heading?
Dayton's throat was so sore, he couldn't talk or eat for a few days after the incident. I had to force him to drink. He had lots of smoothies and milkshakes as meals. Naturally, I kept him home for those days.
Inclusion... does it really work? Not for us. It's been a literal hell. A facebook friend said it perfectly: "There are two types of inclusion, genuine and cosmetic. What our kids are getting most often is cosmetic inclusion. They're in the classroom, and it all looks good, but that's about where it ends."
Consider yourselves hugged!
Lou
If our children wore leg braces, you'd have teachers and aids ligning up to help them, there would be no doubt as to their deficits and need for help. People in general are just more apt to believe there's a problem when they can SEE the problem. PDD-NOS is not something you can visually see, neither is high functioning autism or Aspergers. When the problem is visual and obvious, people are just much more likely to HELP. The presence of intelligence, strengths, and actual talents make it even harder for teachers to be believe there are real, concrete deficits.
No parent wants to think of segregating their child. Segregation brings horrible pictures to mind of "No blacks allowed," and "whites only." But the fact of the matter is, our kids are horribly misunderstood. Who's fault is this? Certainly not the parents. Most parents are more than happy to share with their child's school things that work for their children and things that don't. I know I most certainly do. The problem is that the school staff really don't have the time to listen to what I have to say, as I am not an expert on the subject. "They," on the other hand, are well meaning "professionals," who know what my child needs. Their experience and expertise on what works on typical children is what they believe will work for my son. And then they wonder why they have problems...
The most frustrating part of raising a child with a neurological difference, such as autism, aspergers and PDD-NOS, is not the child themselves... it's trying to convince others the enormity of the child's deficits. Deficit areas such as language (understanding rhetorical questions), sensory issues (Dayton can't certain sounds, for example music class is super painful for him, or the feel of new socks), theory of mind (thinking about how another person thinks or why they react they way they do, for example emotions), problem solving, anxiety, consistency in their scheduled days, social skills, play skills, motor issues (Dayton is 9, and he still can't tie his shoes because his fingers can't manipulate the shoe laces), spacial orientation (where the body is in space, for example co-ordination).
If inclusion in our school systems is to work, I think it is vital for them to understand these deficits and BELIEVE them. Their disbelief is not only affecting our children, but the typical children as well. Think about it. If a busy classroom with colorful walls overstimulates my child and he has a melt down, it affects the entire classroom. The one most affected is my child along with me, since he will now be suspended and I have to leave work to go and get him. My boss is not pleased at all the work I am missing and my students also suffer the consequences. When a teacher uses an idiom such as "hold your horses" and my son responds with "what horses?" the teacher automatically assumes Dayton is being disrespectful and sends him to the office. Dayton of course throws a fit because he's answered her question and doesn't understand why he's being sent to the office. I am called to pick him up AGAIN.
By the time I get to the school, Dayton is furious, has punched the walls, pushed teachers and children out of his way because he's super frustrated at trying to understand what he's done wrong and no one is answering him. He feels picked on and not important. In his anger he screams, scaring the children around him.
Here's a perfect example of total and complete miscommunication between school staff and Dayton from last February:
Little Johnny has a hole in his back pack. Dayton sees the hole and he just can't help himself... He sticks his finger in the hole and rips the back pack further. (Impulse control deficit, this is not an excuse, but an explanation as to why he did this). Dayton's teacher and aid are standing across the room watching Dayton do this. The teacher the approaches Dayton and asks him "Dayton, did you rip Johnny's back pack?"
Dayton: "No." (Language deficit. Dayton has answered the question asked truthfully. He is literal. He did not rip the back pack, it was already ripped. Dayton is not able to articulate this).
Teacher: "Yes, yes you did, I watched you do it."
Dayton tries to back away from the teacher, but she follows. In order to get away from her he moves a desk. This is viewed as "aggressive behavior." The aid now approaches Dayton from the other side and the two women figure they can corner him. Can you see where this is heading?
Dayton's throat was so sore, he couldn't talk or eat for a few days after the incident. I had to force him to drink. He had lots of smoothies and milkshakes as meals. Naturally, I kept him home for those days.
Inclusion... does it really work? Not for us. It's been a literal hell. A facebook friend said it perfectly: "There are two types of inclusion, genuine and cosmetic. What our kids are getting most often is cosmetic inclusion. They're in the classroom, and it all looks good, but that's about where it ends."
Consider yourselves hugged!
Lou
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