Autism means something different to every individual on the spectrum, to every family of those individuals and to each support worker. I love the autism catchphrase, "If you've met one autistic persons, you've met one autistic person." I think we all need to remember this, not just for autism but for all those lovely "box words" that we use to classify people, because assumptions can be painful.
So, that being said, the following is from my family, about my family-not an outline of what every family that includes an autistic person is like. So here are bits and pieces of conversations we have had about autism:
Me: "So, what do you think is different for us, than for people without an autistic in the family?"
Husband, "Instead of hockey tournaments to drive to, we drive to speech, conferences about 'stuff'.| (Looks at NSLM), "I am glad to, because I hate hockey."
Princess "We have to have a poster in the shower"
NSLM "We say the word autism. HAHAHA. Yes, Mother. I am not sure what other families do for a life. Perhaps my joke is a joke that is not a joke."
Husband, "We eat dinner at the same time every day."
Me "Other families do that, I think, some anyways."
Hubby, "Ok, I didn't. Haha. Umm, signs to turn off lights, wash hands and so forth."
Me "HAHA! Wow, that just doesn't seem like a huge difference."
Me: "Ok, um, what do you find the most difficult part of interacting with NSLM is?"
(Silence)
Me "I find it hard to remember that half the time that you, (looking at NSLM), are sounding insolent that it is not intentional."
Princess, "Well, I don't like it, NSLM, when you don't pay attention to how you are dressed. People might think you are stinky if your hair looks greasy."
NSLM, "My hair is clean."
Princess "Ok, but you didn't brush it, so its all, bleh. And people that don't know you see that, and they like don't know you, so they kinda decide what you are like by how you look."
NSLM "That is not smart. But ok."
Princess "I just don't want you do get picked on."
NSLM "I don't want me to get picked on either! So brushing my hair will help this?"
Princess "Yes! It will."
NSLM "Ok"
(I will be watching to see if he will have more care with his hair now, this is a battle we have been having for some time-he hates to brush is hair, *sigh* teens....)
Hubby, "HA! He uses your words against you! If you say something to him, those exact words will be said later."
Me "And NSLM? Do you find it easier to talk to your friends in group than to us?"
NSLM "That answer would change."
Me "Can you tell us about that?"
NSLM "I have the less bit of work to talk to group. No person does tell me to 'Look! Face Me!' I can talk to a person behind me and it is ok. I can talk more here where it is that no one will bully (smirk), except Princess haha."
Me "Ok. Can anyone think of anything that came with the autism diagnosis that is interesting?"
Princess, "haha! Well, that sense of humour is certainly interesting. (grins)."
Me, "I find your (looking at NSLM) ability to visualize things fascinating. And then you build these amazing things! Wow! But, then, I do not know how much of that is part of autism, and truly (laughs) I don't care."
I will add what NSLM has to say about what he thinks about having autism, when he is ready to share.
So, anyways, I hope that this little conversation was as boring for you all as it was for me. :)
I am not trying to belittle the struggle that some have, or most have at certain times, with autism-but regardless of where your (or your loved one) is on the spectrum, there is so much that is fairly standard. We all sleep, eat and interact. With each child a parent has to teach in a manner that the child can learn, foster talents and help overcome weaknesses. With autism that means specialized people are available to help overcome those weaknesses.
Anyways, happy autism awareness day!
Friday
Hugging-it's the new stim!
NotSoLittleMan has grown and changed so much over the years that it sometimes startles me. I look at him now, chortling over some witty comment he made and I remember the days when he was unintentionally hilarious. Now, with the help of interventions (social group, behavior interventionists, social comics, social stories, practice, conversations and videos); experience (playdates, mingling with peers in school, sports, activities); and growth (several years have gone by, he has, of course, grown and developed); my NSLM is no longer the brutally blunt (funny), friendless, constantly stimming, socially inept, train obsessed kid he was in kindergarten (and grade one, and grade two and...)
NSLM is able to greet someone, ask how their day was, wait for an answer and respond appropriately. NSLM has made some new friends in middle school and has graduated from trains to YuGiOh to video games and internet-with the more recent obsessions being much more age appropriate even if they would be considered excessive in comparison to his peers.
NSLM has dealt with a bully successfully (albeit painfully), navigated a new and much larger school, learned to be somewhat flexible in his routines and can even cook a few simple meals.
And the old stim, particularly the circle pacing, has been replaced with hugging. It is a side hug, or behind hug, and I am usually the recipient, but I do notice that in the situations where he usually needs to pace that circle he is now hugging me instead.
I, of course, am loving it! But it leaves me wondering..... What is he doing at school? Cuz you can bet your favorite T Shirt that if he was randomly hugging people at school I would have heard about it!
All joking aside, I am, like every other parent out there, enjoying the growth, worrying about the hurdles and doing what I can to encourage him to be the best dude he can be. I thoroughly enjoy his more mature wit, ability to have a tongue in cheek answer for everything (although sometimes I struggle when he borders on insolent), He is an amazing kid!
NSLM is able to greet someone, ask how their day was, wait for an answer and respond appropriately. NSLM has made some new friends in middle school and has graduated from trains to YuGiOh to video games and internet-with the more recent obsessions being much more age appropriate even if they would be considered excessive in comparison to his peers.
NSLM has dealt with a bully successfully (albeit painfully), navigated a new and much larger school, learned to be somewhat flexible in his routines and can even cook a few simple meals.
And the old stim, particularly the circle pacing, has been replaced with hugging. It is a side hug, or behind hug, and I am usually the recipient, but I do notice that in the situations where he usually needs to pace that circle he is now hugging me instead.
I, of course, am loving it! But it leaves me wondering..... What is he doing at school? Cuz you can bet your favorite T Shirt that if he was randomly hugging people at school I would have heard about it!
All joking aside, I am, like every other parent out there, enjoying the growth, worrying about the hurdles and doing what I can to encourage him to be the best dude he can be. I thoroughly enjoy his more mature wit, ability to have a tongue in cheek answer for everything (although sometimes I struggle when he borders on insolent), He is an amazing kid!
Thursday
Autism Speaks does NOT speak for me!
I am re-posting about this, as there seems to be a wee bit of confusion about why, WHY should we not be thrilled that some big company is supporting an autism charity?
I posted a link to a petition, although I do not have faith that such petitions will do any good, but this one is AGAINST Toys R Us collecting donations for Autism Speaks.
When Autism Speaks created that Horrid Video I was devastated. Then I found out, last year, that Toys R Us supports Autism Speaks. I was not impressed.
Why not?
Autism Speaks is anti-autism,
They run these awful advertising campaigns in which they demonize autism, comparing it to disease, death, kidnapping, tragedy, illness, murders and poverty. Autistic persons and their families & friends have tried to counter the evil message that Autism Speaks has spread.
They do not allow autistic persons to take part in any aspect of their business.
They promote psuedoscience.
They treat autism as a disease and persons with autism as if they have no value as people.
My child is NOT a tragedy. He is not better off dead, did not cause me to be impoverished, divorced or any such damn thing. He is not a shadow, nor invisible. By what right does Autism Speaks spread such fear and hatred of ANY human-let alone a group of people who have a neurological, pervasive devleopmental disorder.
Their "we kidnapped your child" bullpoopie campaign worked great for raking in the dough. (Money that does not seem to benefit any autistic persons).
So yes, I would like to see Toys R Us helping that money to go to an organization that DOES help autistic persons, provide autistic services, help the families of young autistic persons-even research how to provide better services.
But it hurts my heart to watch a big corporation such as Toys R Us to help give credibility to an organization that is so well despised by so many that are the persons that they are supposed to be helping.
Sad....
I posted a link to a petition, although I do not have faith that such petitions will do any good, but this one is AGAINST Toys R Us collecting donations for Autism Speaks.
When Autism Speaks created that Horrid Video I was devastated. Then I found out, last year, that Toys R Us supports Autism Speaks. I was not impressed.
Why not?
Autism Speaks is anti-autism,
They run these awful advertising campaigns in which they demonize autism, comparing it to disease, death, kidnapping, tragedy, illness, murders and poverty. Autistic persons and their families & friends have tried to counter the evil message that Autism Speaks has spread.
They do not allow autistic persons to take part in any aspect of their business.
They promote psuedoscience.
They treat autism as a disease and persons with autism as if they have no value as people.
My child is NOT a tragedy. He is not better off dead, did not cause me to be impoverished, divorced or any such damn thing. He is not a shadow, nor invisible. By what right does Autism Speaks spread such fear and hatred of ANY human-let alone a group of people who have a neurological, pervasive devleopmental disorder.
Their "we kidnapped your child" bullpoopie campaign worked great for raking in the dough. (Money that does not seem to benefit any autistic persons).
So yes, I would like to see Toys R Us helping that money to go to an organization that DOES help autistic persons, provide autistic services, help the families of young autistic persons-even research how to provide better services.
But it hurts my heart to watch a big corporation such as Toys R Us to help give credibility to an organization that is so well despised by so many that are the persons that they are supposed to be helping.
Sad....
Monday
Paperwork-Perhaps that is why parents feel tragic?
So, Sources (previously Gateway), called me to tell me that they are sending us an "autism outreach worker." I admit, although I vaguely remember filling out the forms, I couldn't remember what exactly that meant. If you have never been the parent to a child with disabilities you may not understand how such a thing could happen-(Is she trying to rip off the system, you may wonder, or perhaps she is just a pathetic parent?)
One of the most tedious duties, for me, of being a parent to Not So Little Man, is the massive amount of paperwork that came with it. First, back when you first started noticing that your precious child was not keeping up with his/her peers in certain developmental areas, (or perhaps when the teachers pointed it out, depending on your child,) you are handed a stack of paperwork to fill out.
The checklists for ADD, ADHD, Depression, Psychosis, Child Abuse, ODD, OCD, heck I am not even sure what some of those checklists are for, really.
Some of the questions are annoying, some are difficult to answer, (Do you guys know what your children's apgar scores were? I didn't even know about apgar scores until two years ago at Sunny Hill when they asked me what Not So Little Man's score was.) I have three children and had run a daycare in my home as well as fostered children. I have no idea how old my darlings were when they learned to say three words together in a phrase or sentence. No one told me there was going to be a test!
A neat thing about these checklists, (screening sheets), you can fill them out today and be fairly confident that you are fully understanding and answering correctly. Then next year you can look them over and feel completely puzzled. (Why the heck did I check that one?)
We started with the Child Development Centre in our area. they gave me five complete sets of paperwork. One set was for Little Man's doctor to fill out. One for me to fill out, one for my (then) husband to fill out, one for Little Man's preschool teacher and one for grandma (she lived with us).
Then, if the feeling of taking a test was not strong enough for you, they compare these checklists to see how picked what and what matches. At that time my (then) husband strongly disagreed that there were any need for these forms. (Hey, were were young-and he did not have the same level of experience with other children or with Little Man as his work took him out of town.) I am sure that I am not alone in finding that at least one person in the group required to fill these forms out dawdled and took FOREVER.
From there we were referred to Children and Youth Mental Health, where they gave us several packages of similar paperwork to fill out.
Then in Kindergarten we were referred to a Pscyh-Ed assesment, with it's own multiple sets of paperwork, then to the Autism Asessment Outreach Team, then to the big city POPARD team, then to Sunnyhill. Each of these groups wanting copies of all the previous paperwork as well as their own mutliple sets of paperwork.
And then you get a team that does not refer you on, but is confident in their finding to apply a lable. So good right?
ARGH! NO!
More paperwork there. After we got the diagnosis, we had to fill out paperwork for MCFD (minsitry of children and family development), Gateway (Autism Support,) Child Development Centre, Community Living, Provincial paperwork & federal paperwork-plus get the school on board, get ahold of therapists and fill out their paperwork.
So I was unapologetic as I asked what exactly I had applied for. The lovely lady I spoke with gave me some very interesting news. Their service is unbelievably cool (in theory at least), as they send you a trained Behaviour Analyst who is EXPERIENCED in helping families with autistic children navigate the systems, set up home supports etc.
For example, she is coming here and she and I will discuss my concerns for Not So Little Man, and what I want to see happen, how to help ensure that his funding is being used effectively.
She will help me develop a reasonable plan, with clear goals and clear steps to get there. Then she will meet with me, Not So Little Man's Speech Therapist, BI, EA and the school (principal, councilor, teacher and inclusion teacher). She will do the same-lay out clear goals, clear steps to obtain those goals and explain how the funding is used to maximize results for Not So Little Man.
Then she actually tracks the progress, provides a report that is CC'd to ALL involved. She will help his therapists set up plans, help us to do the same at home, and at school. She will also ensure that his funding is being used appropriately. I have been assured that she is friendly, proactive and not likely to be making the rest of us (school, therapists, parents) feel that we are not competent.
How exciting! Sounds great. And it costs me nothing but time and love. I will have to update as things go along here, as to how it works in practice.
If anyone has suggestions of things to plan for, that would be great too!
Hugs and Laughter,
Angela
One of the most tedious duties, for me, of being a parent to Not So Little Man, is the massive amount of paperwork that came with it. First, back when you first started noticing that your precious child was not keeping up with his/her peers in certain developmental areas, (or perhaps when the teachers pointed it out, depending on your child,) you are handed a stack of paperwork to fill out.
The checklists for ADD, ADHD, Depression, Psychosis, Child Abuse, ODD, OCD, heck I am not even sure what some of those checklists are for, really.
Some of the questions are annoying, some are difficult to answer, (Do you guys know what your children's apgar scores were? I didn't even know about apgar scores until two years ago at Sunny Hill when they asked me what Not So Little Man's score was.) I have three children and had run a daycare in my home as well as fostered children. I have no idea how old my darlings were when they learned to say three words together in a phrase or sentence. No one told me there was going to be a test!
A neat thing about these checklists, (screening sheets), you can fill them out today and be fairly confident that you are fully understanding and answering correctly. Then next year you can look them over and feel completely puzzled. (Why the heck did I check that one?)
We started with the Child Development Centre in our area. they gave me five complete sets of paperwork. One set was for Little Man's doctor to fill out. One for me to fill out, one for my (then) husband to fill out, one for Little Man's preschool teacher and one for grandma (she lived with us).
Then, if the feeling of taking a test was not strong enough for you, they compare these checklists to see how picked what and what matches. At that time my (then) husband strongly disagreed that there were any need for these forms. (Hey, were were young-and he did not have the same level of experience with other children or with Little Man as his work took him out of town.) I am sure that I am not alone in finding that at least one person in the group required to fill these forms out dawdled and took FOREVER.
From there we were referred to Children and Youth Mental Health, where they gave us several packages of similar paperwork to fill out.
Then in Kindergarten we were referred to a Pscyh-Ed assesment, with it's own multiple sets of paperwork, then to the Autism Asessment Outreach Team, then to the big city POPARD team, then to Sunnyhill. Each of these groups wanting copies of all the previous paperwork as well as their own mutliple sets of paperwork.
And then you get a team that does not refer you on, but is confident in their finding to apply a lable. So good right?
ARGH! NO!
More paperwork there. After we got the diagnosis, we had to fill out paperwork for MCFD (minsitry of children and family development), Gateway (Autism Support,) Child Development Centre, Community Living, Provincial paperwork & federal paperwork-plus get the school on board, get ahold of therapists and fill out their paperwork.
So I was unapologetic as I asked what exactly I had applied for. The lovely lady I spoke with gave me some very interesting news. Their service is unbelievably cool (in theory at least), as they send you a trained Behaviour Analyst who is EXPERIENCED in helping families with autistic children navigate the systems, set up home supports etc.
For example, she is coming here and she and I will discuss my concerns for Not So Little Man, and what I want to see happen, how to help ensure that his funding is being used effectively.
She will help me develop a reasonable plan, with clear goals and clear steps to get there. Then she will meet with me, Not So Little Man's Speech Therapist, BI, EA and the school (principal, councilor, teacher and inclusion teacher). She will do the same-lay out clear goals, clear steps to obtain those goals and explain how the funding is used to maximize results for Not So Little Man.
Then she actually tracks the progress, provides a report that is CC'd to ALL involved. She will help his therapists set up plans, help us to do the same at home, and at school. She will also ensure that his funding is being used appropriately. I have been assured that she is friendly, proactive and not likely to be making the rest of us (school, therapists, parents) feel that we are not competent.
How exciting! Sounds great. And it costs me nothing but time and love. I will have to update as things go along here, as to how it works in practice.
If anyone has suggestions of things to plan for, that would be great too!
Hugs and Laughter,
Angela
Tuesday
First Day of School-For ME!
Started School today. It was interesting. I am one of the oldest there but I think I am ok with that :)
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