The current estimate of autism incidence is about one in a hundred.
1 in 100...
I know far more than a hundred people. So do you. Chances are, we know a lot more people on the spectrum than we think we do. There are probably three or four kids at your local primary school who have autism and you almost certainly have a colleague, relative or friend.
It doesn’t work out quite that neatly of course, there are clusters in families and professions, and you aren’t going to find deeply autistic people hanging out at the local coffee shop. But on average, you know someone with autism.
But how do you know? It’s not as if they walk around with a bright red ‘A’ stamped on their foreheads. And I know enough about getting a diagnosis to know it’s not simple and straightforward even for experts. There’s a reason it’s called a spectrum – just about everyone on it has autism in their own unique way.
They might not even know themselves. The rate of diagnosis of autism disorders has increased dramatically in the last 20 years, but there is quite a bit of evidence that the rate of autism has remained fairly constant. The increased diagnosis is probably because of doctors becoming more familiar with the disorder. The practical meaning of this is that there are a lot of adults out there who have lived their whole life with ‘quirks,’ ‘habits,’ or ‘social awkwardness,’ who would be diagnosed if they were children today. There are middle aged people being diagnosed for the first time. There are both adults and children who don’t have easy access to specialists to be assessed. And if they don’t know, how would you?
You can’t. As a lay person, even as an experienced parent or teacher or paediatrician watching someone casually, you can’t possibly know if they have an autism spectrum disorder. The best you could do is guess, and some people’s guesses are more likely to be right than others. Most people won’t even think of it as a possibility, although the people reading this blog are probably more aware than most!
Have you thought autism could be the reason your weird colleague sits by himself? Or the kid at school who is far too old to be having tantrums? The annoying preschooler at the library who was copying what everyone said and wouldn’t stand still? The twelve year old who really should be able to do a sleepover by now? That kid whose parents let them live on cheese sandwiches, it can’t possibly be healthy. Someone pushing a shopping trolley all over the place because they’re only stepping on the black tiles, haven’t they grown out of that game yet?
Sure, they could just be awkward, rude, badly parented, indulged, tired, nervous, hungry, or out of sorts for all sorts of reasons you don’t know about. You could be impatient, rushed, stressed, tired, hungry or out of sorts. Or they could have autism.
You’ll probably never know. All you can do is remember that there might be more going on than you know, and have compassion.
Have a great Easter weekend!
Consider yourselves hugged,
Lou
Friday, 22 April 2011
Wednesday, 20 April 2011
~No label~
Again I thank my dear friend for letting my guest on here. Although it has been a daily thing this week, It will start to become more casual or when something really bugs me. Again I'm not here to upset people but just get people talking. There is a lot of people that are too shy/scared etc to say what's on their minds, or ask the questions that I am bringing up.
As my previous blog I stated, I would return to the topic of labels. Up until Nik’s “label” I couldn’t say I knew anyone with Autism, let alone that I knew someone with PDD-NOS. And like many others when I heard the word Autism, I thought Extreme Makeover. I laughed when the doctor said it. I asked him if we were talking about the same child. My son doesn’t rock, doesn’t flap his hands. Hell if you look at him, the only thing you could say is “WHOA, he’s a big boy”. Then I started reading. Man oh man have I read. It’s almost become a bad habit. A night, with nothing interesting on TV, I head over to old Bertha and start reading. Everything and anything really. Then I started reading that my son is Autistic.
I guess I should give a bit of a back story. Nikolas was the perfect baby. Other than the late delivery, perfect pregnancy, no midnight feedings, never cried. Such a happy, healthy baby. Then he turned 1. It started with a couple allergies, asthma, and severe skin problems. Then came age 2. More allergies, worse asthma and a “speech delay”? WTH are you talking about? He’s two, how many words does a 2 year old need to know? Well, apparently more than 5. Then age 3 came. Our first appt with CDC (a place I had never even heard of). “Well miss Thede, he has a severe speech delay, and global developmental delays. We also aren’t able to rule out a form of autism at this point, so come back in 6 months and start therapy ASAP”. Umm I’m sorry, what just happened? We went to the doctor with concerns that he couldn’t feel pain and now he has all these “LABELS”? So I left. Angry, scared, confused and just plain lost. 6 months went by, and we returned. All the labels stuck and now they wanted more people involved. Not to mention at this time his asthma had gone insane and my newborn baby was fighting a blood infection in the hospital. What a life at the ripe age of 22.
At age 4, therapy wasn’t helping, everyone was hitting their heads lost at what to do. One person said, well if only he had a diagnoses, everything would change. Huhh? I thought we already had that? Now you want more labels? So back for yet another assessment. This one took over a year, and landed us at MATC. Within the first 20 minutes of being terrified, the AMAZING doctor looked at me and said, "Yup he’s autistic." Huhh? Are you crazy? Again, this is the time I honestly started laughing. What was he talking about. He has all these other labels and now a new one. So we present the new information to the workers, and they all agree. This was something we were all expecting, “this is good news, we now have a clear diagnosis and things will start rolling now”. Summer came, we moved, took the summer off to soak it in. School started. With all his medical diagnoses and all the labels, I have my head held high and so happy cause “we’re labelled, we’re gonna finally get help”. Nope. Now we’re not labelled right. Apparently although he is autistic, according to a school worker “ he’s just not autistic enough” Come again? Years of assessments and waiting, and all these LABELS added and now he’s not autistic enough? This has been the story since September 2010.
Now depending which family member of mine you talk to, some say more kids are effected now than before. Other’s say there’s too many labels. Maybe they're both right? Are more kids being effected? What has changed to make our kids a lot sicker now? Are they sick? Is the bar just set to high? I don’t know these answers. What I do know is that it shouldn’t matter. If a person loses both their legs, you sympathize. But if they only lose one, do we tell them, “sorry you still have a good one, start hopping?” No. Why does it matter what degree of disability a child has? I have always thought, if a person/child/dog/ cat whatever needs help, you help them. No questions asked. Today that is not the case. Those that need help, aren’t getting it, and the ones that don’t need help are clueless to the situation.
I admit I haven’t been the perfect person. I caused my shit, and trust me I’m laying in it. My child didn’t ask to be different. I think it’s time we get back to basics and stop caring about the stuff that doesn’t matter and start focusing on the important stuff. Our children DO matter. They are our future. Just because society looks at labels and difference we don’t have to. My son doesn’t see the difference between him and another kid. He doesn’t see the difference between an adult and a child. To him we are all equal. Why is that an almost 6 year old “labelled” child can see this, but well educated, over paid adults cannot? I have to admit I’m guilty of wishing I didn’t have to list all his “labels”. With him getting ready for a new school, part of me doesn’t want to tell them all his labels, weaknesses. I want to go into a meeting and just smile for all his strengths. Luckily my child wants to learn. He has dreams and goals. I know “normal” children that don’t even have that. My son is nice to people because he wants to be, and he knows it’s not nice to be mean just because someone is different. He’s passionate about music and numbers, and trying new adventures. Why have meetings about everything he can’t do, and all the “bad/wrong” things about him. Why not change some of the labels? Instead of saying, Nikolas is autistic, delayed, large, allergic switch it up to caring, loving, funny, brave, accepting? At the end of the day we all have labels. We all use labels. She’s “fat”, he’s “skinny”. You're “ugly”, they’re “perfect”.
So this is my take on labels, I’m also signing off with my own label,
Wendy-passionate, mother, daughter, sister, friend, mommy tummy:D
As my previous blog I stated, I would return to the topic of labels. Up until Nik’s “label” I couldn’t say I knew anyone with Autism, let alone that I knew someone with PDD-NOS. And like many others when I heard the word Autism, I thought Extreme Makeover. I laughed when the doctor said it. I asked him if we were talking about the same child. My son doesn’t rock, doesn’t flap his hands. Hell if you look at him, the only thing you could say is “WHOA, he’s a big boy”. Then I started reading. Man oh man have I read. It’s almost become a bad habit. A night, with nothing interesting on TV, I head over to old Bertha and start reading. Everything and anything really. Then I started reading that my son is Autistic.
I guess I should give a bit of a back story. Nikolas was the perfect baby. Other than the late delivery, perfect pregnancy, no midnight feedings, never cried. Such a happy, healthy baby. Then he turned 1. It started with a couple allergies, asthma, and severe skin problems. Then came age 2. More allergies, worse asthma and a “speech delay”? WTH are you talking about? He’s two, how many words does a 2 year old need to know? Well, apparently more than 5. Then age 3 came. Our first appt with CDC (a place I had never even heard of). “Well miss Thede, he has a severe speech delay, and global developmental delays. We also aren’t able to rule out a form of autism at this point, so come back in 6 months and start therapy ASAP”. Umm I’m sorry, what just happened? We went to the doctor with concerns that he couldn’t feel pain and now he has all these “LABELS”? So I left. Angry, scared, confused and just plain lost. 6 months went by, and we returned. All the labels stuck and now they wanted more people involved. Not to mention at this time his asthma had gone insane and my newborn baby was fighting a blood infection in the hospital. What a life at the ripe age of 22.
At age 4, therapy wasn’t helping, everyone was hitting their heads lost at what to do. One person said, well if only he had a diagnoses, everything would change. Huhh? I thought we already had that? Now you want more labels? So back for yet another assessment. This one took over a year, and landed us at MATC. Within the first 20 minutes of being terrified, the AMAZING doctor looked at me and said, "Yup he’s autistic." Huhh? Are you crazy? Again, this is the time I honestly started laughing. What was he talking about. He has all these other labels and now a new one. So we present the new information to the workers, and they all agree. This was something we were all expecting, “this is good news, we now have a clear diagnosis and things will start rolling now”. Summer came, we moved, took the summer off to soak it in. School started. With all his medical diagnoses and all the labels, I have my head held high and so happy cause “we’re labelled, we’re gonna finally get help”. Nope. Now we’re not labelled right. Apparently although he is autistic, according to a school worker “ he’s just not autistic enough” Come again? Years of assessments and waiting, and all these LABELS added and now he’s not autistic enough? This has been the story since September 2010.
Now depending which family member of mine you talk to, some say more kids are effected now than before. Other’s say there’s too many labels. Maybe they're both right? Are more kids being effected? What has changed to make our kids a lot sicker now? Are they sick? Is the bar just set to high? I don’t know these answers. What I do know is that it shouldn’t matter. If a person loses both their legs, you sympathize. But if they only lose one, do we tell them, “sorry you still have a good one, start hopping?” No. Why does it matter what degree of disability a child has? I have always thought, if a person/child/dog/ cat whatever needs help, you help them. No questions asked. Today that is not the case. Those that need help, aren’t getting it, and the ones that don’t need help are clueless to the situation.
I admit I haven’t been the perfect person. I caused my shit, and trust me I’m laying in it. My child didn’t ask to be different. I think it’s time we get back to basics and stop caring about the stuff that doesn’t matter and start focusing on the important stuff. Our children DO matter. They are our future. Just because society looks at labels and difference we don’t have to. My son doesn’t see the difference between him and another kid. He doesn’t see the difference between an adult and a child. To him we are all equal. Why is that an almost 6 year old “labelled” child can see this, but well educated, over paid adults cannot? I have to admit I’m guilty of wishing I didn’t have to list all his “labels”. With him getting ready for a new school, part of me doesn’t want to tell them all his labels, weaknesses. I want to go into a meeting and just smile for all his strengths. Luckily my child wants to learn. He has dreams and goals. I know “normal” children that don’t even have that. My son is nice to people because he wants to be, and he knows it’s not nice to be mean just because someone is different. He’s passionate about music and numbers, and trying new adventures. Why have meetings about everything he can’t do, and all the “bad/wrong” things about him. Why not change some of the labels? Instead of saying, Nikolas is autistic, delayed, large, allergic switch it up to caring, loving, funny, brave, accepting? At the end of the day we all have labels. We all use labels. She’s “fat”, he’s “skinny”. You're “ugly”, they’re “perfect”.
So this is my take on labels, I’m also signing off with my own label,
Wendy-passionate, mother, daughter, sister, friend, mommy tummy:D
Autism Behavior - Communication
Behavior is something which all children display in one form or another. Our child's behavior tells those around them many things about their wants, needs, and desires. The most important thing to understand about behavior is that it is a form of communication. It is a complicated form of communication, but a truly basic one.
Typical children are much better at verbal communication skills than children with autism. Typical children do not always rely on physical behavior to relate a message. Often, children with autism are telling us a lot with their behavior. They can be giving an answer, asking a question or expressing a frustrated response.
Some behaviors expressed by children with autism may be appropriate or inappropriate depending on the situation. Inappropriate behaviors give a negative aspect to our children's learning experience.
It does not matter if the negative behavior occurs in a social situation or academic situation. A negative behavior must be dealt with so that the child with autism can acquire as much information as possible. Some undesired behaviors can not be eliminated. In that case those behaviors should be exchanged with desirable behaviors the child can use. In order to do this, it is both the teacher's and parent's responsibility to teach the child to "change their mind" as my dad says.
One of the stories a family related to me was a teacher who was asking their child a question. Just for example we are going to say the question was 'What is 2 + 2?' This family's child did not understand the question. Their child did not even know how to answer the teacher. It is very common for children with autism to have auditory deficits and not be able to focus on what he's being asked. As far as I'm concerned, if the government insist on inclusion, then this bit of information should automatically be listed in the teacher's handbook.
The first thing their child did was to become withdrawn. The well meaning teacher went closer to the child and asked again. Now this family's child became aggressive and used some really choice curse words. While the well meaning teacher wants to help the child, the child with autism perceives this as an invasion of his space, or an attack. Dayton's perception would be that he's in trouble and under attack. His auditory processing is severely impaired, and he while he can speak, it doesn't mean that he is able to process verbal questions or instructions all of the time. For the most part, he's pretty good at it, but sometimes... let's just say that there are times were he's over stimulated by sounds, smells and too many things going on in the classroom... Auditory processing (hearing and understanding what the speaker is trying to convey to you) and speaking yourself are two completely different things. While closely connected, they are not the same thing.
A little understanding of a child with Autism and communication can help this situation. If a parent and teacher wish to change this undesirable behavior they need to replace it. This is done by teaching a child a different technique or method of getting what they want. In order to do this, parents and teachers MUST work together. Furthermore, the policy of "inclusion" orders for the teacher to accommodate special need students. Most children with autism are very visual learners, so the teacher should accommodate visually to the child, instead of giving auditory instructions. Furthermore, replacing the behavior is NOT ENOUGH. The child needs to practice the replacement behavior. Children with autism do not automatically learn things like typical children do, they must practice over and over in order to "get it."
Tell the child with autism that when they do not understand what someone is asking they can raise their hand. This is a technique to let the adult know what is going on. Another technique is to teach the child to say a special word or phrase instead of cursing. This also gives adults involved a cue that they are feeling frustrated.
Then everyone involved has to understand if they do not respond to those cues the behavior will escalate!!! These are two simple but possibly effective way to help or change behavior in a positive way. Changing or shaping the behavior will help the child with autism have an environment more in line with their learning needs. As most children with autism have difficulties with auditory processing, the teacher could then write down or draw the question out for the child with autism, which would most likely have a better response.
Now many of you would say "a child cursing? That is highly inappropriate! Where is the child learning these words?" as many of the teachers themselves think. Let me assure you that parents of autistic children do not condone cursing from their children. It is not acceptable behavior. To answer your question, it is not the parents that teach their autistic children how to curse. Dayton NEVER curses at home, EVER.
The trick is to convince the school your child attends, that they should heed your advice, and not be judgemental of your parenting. If you're fortunate enough to have a school that works with you, this should not be a problem. If you're fortunate enough to have a school that understands autism, then again, your job will be easier. For those of struggling on both counts, we need to figure out a solution... Any suggestions or ideas are most welcome!!!
Consider yourselves hugged,
Lou
Typical children are much better at verbal communication skills than children with autism. Typical children do not always rely on physical behavior to relate a message. Often, children with autism are telling us a lot with their behavior. They can be giving an answer, asking a question or expressing a frustrated response.
Some behaviors expressed by children with autism may be appropriate or inappropriate depending on the situation. Inappropriate behaviors give a negative aspect to our children's learning experience.
It does not matter if the negative behavior occurs in a social situation or academic situation. A negative behavior must be dealt with so that the child with autism can acquire as much information as possible. Some undesired behaviors can not be eliminated. In that case those behaviors should be exchanged with desirable behaviors the child can use. In order to do this, it is both the teacher's and parent's responsibility to teach the child to "change their mind" as my dad says.
One of the stories a family related to me was a teacher who was asking their child a question. Just for example we are going to say the question was 'What is 2 + 2?' This family's child did not understand the question. Their child did not even know how to answer the teacher. It is very common for children with autism to have auditory deficits and not be able to focus on what he's being asked. As far as I'm concerned, if the government insist on inclusion, then this bit of information should automatically be listed in the teacher's handbook.
The first thing their child did was to become withdrawn. The well meaning teacher went closer to the child and asked again. Now this family's child became aggressive and used some really choice curse words. While the well meaning teacher wants to help the child, the child with autism perceives this as an invasion of his space, or an attack. Dayton's perception would be that he's in trouble and under attack. His auditory processing is severely impaired, and he while he can speak, it doesn't mean that he is able to process verbal questions or instructions all of the time. For the most part, he's pretty good at it, but sometimes... let's just say that there are times were he's over stimulated by sounds, smells and too many things going on in the classroom... Auditory processing (hearing and understanding what the speaker is trying to convey to you) and speaking yourself are two completely different things. While closely connected, they are not the same thing.
A little understanding of a child with Autism and communication can help this situation. If a parent and teacher wish to change this undesirable behavior they need to replace it. This is done by teaching a child a different technique or method of getting what they want. In order to do this, parents and teachers MUST work together. Furthermore, the policy of "inclusion" orders for the teacher to accommodate special need students. Most children with autism are very visual learners, so the teacher should accommodate visually to the child, instead of giving auditory instructions. Furthermore, replacing the behavior is NOT ENOUGH. The child needs to practice the replacement behavior. Children with autism do not automatically learn things like typical children do, they must practice over and over in order to "get it."
Tell the child with autism that when they do not understand what someone is asking they can raise their hand. This is a technique to let the adult know what is going on. Another technique is to teach the child to say a special word or phrase instead of cursing. This also gives adults involved a cue that they are feeling frustrated.
Then everyone involved has to understand if they do not respond to those cues the behavior will escalate!!! These are two simple but possibly effective way to help or change behavior in a positive way. Changing or shaping the behavior will help the child with autism have an environment more in line with their learning needs. As most children with autism have difficulties with auditory processing, the teacher could then write down or draw the question out for the child with autism, which would most likely have a better response.
Now many of you would say "a child cursing? That is highly inappropriate! Where is the child learning these words?" as many of the teachers themselves think. Let me assure you that parents of autistic children do not condone cursing from their children. It is not acceptable behavior. To answer your question, it is not the parents that teach their autistic children how to curse. Dayton NEVER curses at home, EVER.
The trick is to convince the school your child attends, that they should heed your advice, and not be judgemental of your parenting. If you're fortunate enough to have a school that works with you, this should not be a problem. If you're fortunate enough to have a school that understands autism, then again, your job will be easier. For those of struggling on both counts, we need to figure out a solution... Any suggestions or ideas are most welcome!!!
Consider yourselves hugged,
Lou
Tuesday, 19 April 2011
Ranting 102
I'm so glad my dear friend invited me to guest blog with her. I don't expect people to agree with me all the time, but if I made you stop and read this I've done my job. As long as people are talking about the problem we're headed in the right direction. Thank you again Hun for allowing me this.
Ranting 102
So my last blog got me started, and then I realized, maybe everyone is at each others throats because the correct information is NOT being given out. Again this is just my opinion, I’m sure there are many who won’t agree with me, but that’s ok. That’s democracy. It doesn’t matter if you're pro inclusion, pro private, whatever. At the end of the day we all need to have a common goal of providing the best quality of life to our children. Regardless of their label(I’ll touch on labels later on)
First the schools in Manitoba, here in Manitoba we have 686 public schools, which house 13,100 teachers and teach over 179,802 students each year. Now a report out earlier this year stated the government of Manitoba spends approx. $10,000 a year per student to attend public school. Since January the province has announced it spends about 3 million dollars a year in a “bright start” program, which will help students remain in school and graduate. They have also suggested paying students. Yes that’s right. If you want to be a drop out, the government is willing to pay you to finish school. On January 27th, they also announced that they would increase the funding to “special need students”. Apparently since 1999 they have improved the funding for special need students and now spend $186.1 million dollars annually. They have also stated in the report that for the 2011-2012 year they will increase the special needs funding $1.3 million dollars and increase level 2 and level 3 funding by 3%. Now from a bystanders view that’s pretty good, no? If we re-elect the government they will increase the funding for special need students. Hmm it should be a win-win for all special need students. Well as the report in the Winnipeg sun showed, although there is new funding and not just for the special needs department, once you pay ALL the division people, and janitors, ALL the new funding the province announced will trickle down to less than $60 a student. That’s right. ALL the announcements this year, and by the time they pay all the high end people who don’t even work with our children, our children will actually see about $60 in the class. Now I’m still looking on stats to find out how many special need students there are in Manitoba, but I’m going to take a rough guess. If 1-6 students are “disabled” that’s roughly 29,996 students in Manitoba have “special needs” Which isn’t a lot compared to the yearly enrolment. Now take the 186.1 million dollars a year for special need funding, That’s about 6.2 million dollars a year per special need student. SERIOUSLY? Yes it took me a little bit to do that math, but if the province is stating that they spend 186 million dollars a year, and we roughly have 30,000 special need students in this WHOLE province, 6million a piece. I can tell you right now that in my son’s education, he does NOT see 6 million a year. This is his first year in school and all year the school has been complaining because they won’t get the level 2 funding GRANT, which is just a $8500 tax credit to the division. Without the grant he’s not entitled to anything. No 1-1 aid, no modification, no speech, no OT, NOTHING. Seriously? Something is seriously flawed in this system. If we’re spending 186.1 million dollars a year and 76% of special need kids ARE NOT getting help, where’s the money? Even the 34% of kids that do get help, aren’t getting TRAINED help. The province is quick to offer tuition rebates to “in demand jobs”, doctors, trades, ect. But you can’t offer something to interest people to work with our children? I think if this is the ONLY option. Because really here in Manitoba it is the ONLY option. If you home school your out on your own(jeez give me the 6 million dollars a year and I can assure my son will get ALL the modifications and resources he needs..lol), public for our kids is the only choice. Maybe we should have more say. In daycare 2/3 of the staff have to be TRAINED. You cannot operate a daycare full of CCA’s. At least 2/3 of the staff has to be ECE2 or ECE 3. So why aren’t we applying the same guidelines to our education department. 13,000 teachers in Manitoba and how many are trained to modify, adapt, and teach these children?
So again, these are just my thoughts. To the parents that believe the system is working for them, that’s great. The sad part is, for all the fancy announcements and all the “promises” a lot of our children are NOT getting the help. I know of several people who aren’t getting the help. So I think it’s time we as parents step it up and start demanding what our children need. Not just assuming that they are getting the best because personally when my child is being told to “stay home” or “I should just accept this is as good as he’ll get” this is not the best situation.
Wendy
Ranting 102
So my last blog got me started, and then I realized, maybe everyone is at each others throats because the correct information is NOT being given out. Again this is just my opinion, I’m sure there are many who won’t agree with me, but that’s ok. That’s democracy. It doesn’t matter if you're pro inclusion, pro private, whatever. At the end of the day we all need to have a common goal of providing the best quality of life to our children. Regardless of their label(I’ll touch on labels later on)
First the schools in Manitoba, here in Manitoba we have 686 public schools, which house 13,100 teachers and teach over 179,802 students each year. Now a report out earlier this year stated the government of Manitoba spends approx. $10,000 a year per student to attend public school. Since January the province has announced it spends about 3 million dollars a year in a “bright start” program, which will help students remain in school and graduate. They have also suggested paying students. Yes that’s right. If you want to be a drop out, the government is willing to pay you to finish school. On January 27th, they also announced that they would increase the funding to “special need students”. Apparently since 1999 they have improved the funding for special need students and now spend $186.1 million dollars annually. They have also stated in the report that for the 2011-2012 year they will increase the special needs funding $1.3 million dollars and increase level 2 and level 3 funding by 3%. Now from a bystanders view that’s pretty good, no? If we re-elect the government they will increase the funding for special need students. Hmm it should be a win-win for all special need students. Well as the report in the Winnipeg sun showed, although there is new funding and not just for the special needs department, once you pay ALL the division people, and janitors, ALL the new funding the province announced will trickle down to less than $60 a student. That’s right. ALL the announcements this year, and by the time they pay all the high end people who don’t even work with our children, our children will actually see about $60 in the class. Now I’m still looking on stats to find out how many special need students there are in Manitoba, but I’m going to take a rough guess. If 1-6 students are “disabled” that’s roughly 29,996 students in Manitoba have “special needs” Which isn’t a lot compared to the yearly enrolment. Now take the 186.1 million dollars a year for special need funding, That’s about 6.2 million dollars a year per special need student. SERIOUSLY? Yes it took me a little bit to do that math, but if the province is stating that they spend 186 million dollars a year, and we roughly have 30,000 special need students in this WHOLE province, 6million a piece. I can tell you right now that in my son’s education, he does NOT see 6 million a year. This is his first year in school and all year the school has been complaining because they won’t get the level 2 funding GRANT, which is just a $8500 tax credit to the division. Without the grant he’s not entitled to anything. No 1-1 aid, no modification, no speech, no OT, NOTHING. Seriously? Something is seriously flawed in this system. If we’re spending 186.1 million dollars a year and 76% of special need kids ARE NOT getting help, where’s the money? Even the 34% of kids that do get help, aren’t getting TRAINED help. The province is quick to offer tuition rebates to “in demand jobs”, doctors, trades, ect. But you can’t offer something to interest people to work with our children? I think if this is the ONLY option. Because really here in Manitoba it is the ONLY option. If you home school your out on your own(jeez give me the 6 million dollars a year and I can assure my son will get ALL the modifications and resources he needs..lol), public for our kids is the only choice. Maybe we should have more say. In daycare 2/3 of the staff have to be TRAINED. You cannot operate a daycare full of CCA’s. At least 2/3 of the staff has to be ECE2 or ECE 3. So why aren’t we applying the same guidelines to our education department. 13,000 teachers in Manitoba and how many are trained to modify, adapt, and teach these children?
So again, these are just my thoughts. To the parents that believe the system is working for them, that’s great. The sad part is, for all the fancy announcements and all the “promises” a lot of our children are NOT getting the help. I know of several people who aren’t getting the help. So I think it’s time we as parents step it up and start demanding what our children need. Not just assuming that they are getting the best because personally when my child is being told to “stay home” or “I should just accept this is as good as he’ll get” this is not the best situation.
Wendy
Monday, 18 April 2011
Ranting 101
Guest Post, I figured you're all tired of listening to my rants...
Introducing Wendy, a facebook friend of mine, who's 5 year old boy has been diagnosed with PDD-NOS (Pervasive developmental disorder, not otherwise specified) and global delays, just like my little guy. Wendy has endured incredible dissapointments with her school division and is being forced to move to the city in order to get services for her little guy.
-Ranting 101-
I’m sure I don’t know all there is to know, but someday I will. One thing is for sure what I do currently know is disturbing. The system sickens me and this may offend 1 or 2 or more of you, I apologize in advance for that. These are simply my opinions and if you don’t think, your not forced to read them. I do ask that you stop and think outside the box that you have surrounded yourself with. Maybe the thing you thought was right, has another side?
So I am the mother to two beautiful children. Some would say I have the perfect family. The handsome son, and beautiful little girl. However behind the perfection there is sadness, fear, anxiety, and anger. There is struggle, and frustration with understanding how this world works. I am proudly Canadian, and although some would argue I am proudly a Manitoban. So here is a taste of my issue I am having with being a proud Manitoban.
I am a mother of a little boy with more than enough problems on his plate. Now although he has problems and is “special needs” he’s still my amazing child. The past 4 years have been hell. There is no simple way of putting that. There have been highs n lows, and many cry fests in my bathroom, or the public washroom at the clinic, ect. My sadness has turned to anger, and my anger is driving my determination. In Manitoba some would be proud to say we have a “inclusion policy”. here’s the catch, it DOESN’T include everyone. It only includes the families on the higher end of the spectrum, and only if your school/division feels like enforcing it. It also doesn’t “include” trained professionals. Yes we have teachers, and resource and principals, but in this “amazing” policy, you will not find a “trained” teacher for every disability and “it’s too costly, and time consuming” . Here’s the other catch, it’s the ONLY policy. So even if your don’t agree or feel that the policy is working your only option is to quit your job and home school your child and cover the costs yourself because if you don’t like the policy your shit outta luck. In several other places in Canada and the US you as the parent have the option. You have the option of private school, public schools, funded private, special need schools, ect. Here you don’t. Your either in or not. Not to mention during election years(like this year), the government has reduced the number application approvals to UNDER 40%.Don't worry though, if you re-elect them, they will increase it back up. Here’s the other catch, they say early intervention is key. However most families will tell you they spent more time on bottomless wait lists, waiting to the point that by the time they got into it was too late for any help and were told to go to the school division as that’s your only option. Here’s a thought, instead of telling me what I have to do and painting it like I have a choice, why not give me an actual choice?
Now I know some parents feel the inclusion policy is working for them, that’s great. The point however, an inclusion policy is suppose to include ALL, not some, not 34%, but ALL kids. Here’s my other issue. Now maybe there are people out there that need to know “why”. Why is their child Autistic, what happened, what caused it, ect. Here’s the truth. You’ll never know. Every day, and every month we are wasting money trying to figure out WHY it happened, instead of looking for ways to treat it. Instead of spending money looking at vaccines(personally I don’t care), put the money towards more trained professionals. Short wait times, more staff, more resources.
Now here in this province, approx. your child will be diagnosed between the age of 3 and 6. Some later, some earlier. If your lucky to get in prior to 5, you have more options. Post preschool there’s not much out there other than the school. Now if your child is “mild” most schools will NOT help. There are even some sadder situations where “higher functioning” kids aren’t getting help(that’s a different rant). So your child is too old for the programs and services, and the school says they can’t help, what do you do? Well depending who you talk to in the am from the pm, they will tell you “nothing, it’s politics, pay for private, home school, it’s your parenting, try different diets, blankets, this that and this next thing”. So let’s say your child makes it through school, good grades or not, finishes school. Now I’m not an expert but from what I’ve heard, and read, as well as compared to other cities in North America, what choices do you have? Some may be able to get into one of the few programs offered by the province, city. Others? Well they will be cut a monthly cheque.
Why not follow other cities and start young. Start guiding and informing and “training” these people(yes i said, they are people!) to be independent and live full healthy lives as adults? They like to say, “invest in our children now, and great things will come in the future” So I ask, why are only some kids being invested in? Who has the right to say one kid deserves a chance over another? For a society that has come along way since the 40’s and 50’s, we are still very far from where we need to be.
My child is a person. He has thoughts and ideas, and strengths and weaknesses. Why is he looked at like a weakness instead of being proud of his strengths? He’s not alone. Over 40,000 Manitobans alone are disabled in one form or another. Not to mention the families that are effected. I don’t expect to move mountains, or try to upset people. I just think there isn’t always one answer to every problem. These are our children, why is the government telling us what they need? Why not ask us? Has the minister of education ever called you up and said, “hey, how’s the policy working for you?” No. It’s next to impossible to even get a email from her. This isn’t just Autism families either. A lot of families are hitting brick walls, fighting with schools, ministers, ect. This is not working. I think it’s time to re-think things and maybe be accepting that there might be another option. If we can figure out how to squeeze 4000 new people into this province every month, then I’m sure we can find a solutions that works for ALL children.
Yes there are MANY more problems and this is just a tip of my rant. The last year has been one of the hardest years of my life. The saddest part is, it had nothing to do my kids. All my stress and sadness came from dealing with these so called "experts", ministers, resource ect. I don't care if you've gone to school for something "kinda like this". I wake up everyday and deal with it. I wake up and have to explain to my son why he's different, why kids laugh at him. Also on a closing note. If my "special" son wants to piss in the stall who cares? At least he's doing it by himself and taking some control of his day. Like really, PICK your battles cause I promise a urinal or a stall is not a battle worth fighting for.
Till the next rant,
Wendy
Introducing Wendy, a facebook friend of mine, who's 5 year old boy has been diagnosed with PDD-NOS (Pervasive developmental disorder, not otherwise specified) and global delays, just like my little guy. Wendy has endured incredible dissapointments with her school division and is being forced to move to the city in order to get services for her little guy.
-Ranting 101-
I’m sure I don’t know all there is to know, but someday I will. One thing is for sure what I do currently know is disturbing. The system sickens me and this may offend 1 or 2 or more of you, I apologize in advance for that. These are simply my opinions and if you don’t think, your not forced to read them. I do ask that you stop and think outside the box that you have surrounded yourself with. Maybe the thing you thought was right, has another side?
So I am the mother to two beautiful children. Some would say I have the perfect family. The handsome son, and beautiful little girl. However behind the perfection there is sadness, fear, anxiety, and anger. There is struggle, and frustration with understanding how this world works. I am proudly Canadian, and although some would argue I am proudly a Manitoban. So here is a taste of my issue I am having with being a proud Manitoban.
I am a mother of a little boy with more than enough problems on his plate. Now although he has problems and is “special needs” he’s still my amazing child. The past 4 years have been hell. There is no simple way of putting that. There have been highs n lows, and many cry fests in my bathroom, or the public washroom at the clinic, ect. My sadness has turned to anger, and my anger is driving my determination. In Manitoba some would be proud to say we have a “inclusion policy”. here’s the catch, it DOESN’T include everyone. It only includes the families on the higher end of the spectrum, and only if your school/division feels like enforcing it. It also doesn’t “include” trained professionals. Yes we have teachers, and resource and principals, but in this “amazing” policy, you will not find a “trained” teacher for every disability and “it’s too costly, and time consuming” . Here’s the other catch, it’s the ONLY policy. So even if your don’t agree or feel that the policy is working your only option is to quit your job and home school your child and cover the costs yourself because if you don’t like the policy your shit outta luck. In several other places in Canada and the US you as the parent have the option. You have the option of private school, public schools, funded private, special need schools, ect. Here you don’t. Your either in or not. Not to mention during election years(like this year), the government has reduced the number application approvals to UNDER 40%.Don't worry though, if you re-elect them, they will increase it back up. Here’s the other catch, they say early intervention is key. However most families will tell you they spent more time on bottomless wait lists, waiting to the point that by the time they got into it was too late for any help and were told to go to the school division as that’s your only option. Here’s a thought, instead of telling me what I have to do and painting it like I have a choice, why not give me an actual choice?
Now I know some parents feel the inclusion policy is working for them, that’s great. The point however, an inclusion policy is suppose to include ALL, not some, not 34%, but ALL kids. Here’s my other issue. Now maybe there are people out there that need to know “why”. Why is their child Autistic, what happened, what caused it, ect. Here’s the truth. You’ll never know. Every day, and every month we are wasting money trying to figure out WHY it happened, instead of looking for ways to treat it. Instead of spending money looking at vaccines(personally I don’t care), put the money towards more trained professionals. Short wait times, more staff, more resources.
Now here in this province, approx. your child will be diagnosed between the age of 3 and 6. Some later, some earlier. If your lucky to get in prior to 5, you have more options. Post preschool there’s not much out there other than the school. Now if your child is “mild” most schools will NOT help. There are even some sadder situations where “higher functioning” kids aren’t getting help(that’s a different rant). So your child is too old for the programs and services, and the school says they can’t help, what do you do? Well depending who you talk to in the am from the pm, they will tell you “nothing, it’s politics, pay for private, home school, it’s your parenting, try different diets, blankets, this that and this next thing”. So let’s say your child makes it through school, good grades or not, finishes school. Now I’m not an expert but from what I’ve heard, and read, as well as compared to other cities in North America, what choices do you have? Some may be able to get into one of the few programs offered by the province, city. Others? Well they will be cut a monthly cheque.
Why not follow other cities and start young. Start guiding and informing and “training” these people(yes i said, they are people!) to be independent and live full healthy lives as adults? They like to say, “invest in our children now, and great things will come in the future” So I ask, why are only some kids being invested in? Who has the right to say one kid deserves a chance over another? For a society that has come along way since the 40’s and 50’s, we are still very far from where we need to be.
My child is a person. He has thoughts and ideas, and strengths and weaknesses. Why is he looked at like a weakness instead of being proud of his strengths? He’s not alone. Over 40,000 Manitobans alone are disabled in one form or another. Not to mention the families that are effected. I don’t expect to move mountains, or try to upset people. I just think there isn’t always one answer to every problem. These are our children, why is the government telling us what they need? Why not ask us? Has the minister of education ever called you up and said, “hey, how’s the policy working for you?” No. It’s next to impossible to even get a email from her. This isn’t just Autism families either. A lot of families are hitting brick walls, fighting with schools, ministers, ect. This is not working. I think it’s time to re-think things and maybe be accepting that there might be another option. If we can figure out how to squeeze 4000 new people into this province every month, then I’m sure we can find a solutions that works for ALL children.
Yes there are MANY more problems and this is just a tip of my rant. The last year has been one of the hardest years of my life. The saddest part is, it had nothing to do my kids. All my stress and sadness came from dealing with these so called "experts", ministers, resource ect. I don't care if you've gone to school for something "kinda like this". I wake up everyday and deal with it. I wake up and have to explain to my son why he's different, why kids laugh at him. Also on a closing note. If my "special" son wants to piss in the stall who cares? At least he's doing it by himself and taking some control of his day. Like really, PICK your battles cause I promise a urinal or a stall is not a battle worth fighting for.
Till the next rant,
Wendy
The IEP Meeting
I had blogged about Autism Winnipeg a couple of weeks ago, and how the creator of the Autism Winnipeg Facebook page met up with me to talk about Autism Winnipeg. Instead of discussing it, she insisted on talking to me about Dayton, and wanted to prepare me for Dayton's upcoming IEP meeting which would be taking place a few days after our talk. Her pep talk helped immensely, and I took her advice literally: "I am Teflon!" Acknowledge the school's remarks and deflect right back at them. Teflon.
Armed with Marni's pep talk and her image of Teflon, off I went to the Dayton's IEP meeting along with our CFS social worker, Brenda, who has been involved in our family strictly to advocate for Dayton's rights and education in the St. James School Division. Brenda's like a fire cracker, and I felt confident walking in with her along with Diana, Dayton's social worker for Children With Special Needs And Disabilities.
When we enter the board room, we are met by the school division's special needs co-ordinator. This will be the first time she'd sit it on any of Dayton's IEP meetings, thanks to to fire cracker social worker from CFS. Somehow, her word carries more weight than mine. There's also the school division's child psychologist, again, her first time involved in Dayton's IEP meeting as well. The Occupational Therapist and Speech Therapist are not available for the meeting. Surprise, surprise! The Occupational Therapist has only observed Dayton's classroom once, and the Speech Therapist has not yet seen Dayton, as far as I know. The principal, guidance counselor, Dayton's classroom teacher, his aid, and the resource teacher were also present.
The guidance counselor, a real piece of work, sits there with a fake smile on her face. Her and I do not get along. She seems to think I'm some how beneath her, and she thinks the same of my husband. She's the one who's called CFS on myself and my husband claiming that Dayton has access to Glen's hunting rifle, and that Dayton was going to come to school and shoot them all on the first call (the principal had also called the police), and the second time she called CFS because Dayton had cut a picture of a man bent over and another man with a paddle tapping his tushy. Apparently Dayton told them that "daddy paddles my butt" and they took him literally (who's autistic now?!). This guidance counselor is also the one that sent me the email I had posted on the blog asking me whether or not I feed Dayton breakfast... She thinks that Glen and I have created (and I quote) "a hostile environment" for Dayton at home by allowing him to play with water guns in the summer, Nerf guns all through the year and of course because Glen has played the "Call of Duty" video game with Dayton. While I am not a big fan of guns, and may not agree with Dayton playing "Call of Duty" with his dad, it doesn't seem to matter where we go: the play ground, the swimming pool, or his 6 year old buddy's house, we run into the same problem. The boys and girls at the swimming pool are playing with water guns, the boys on the playground have brought out their toy guns and his 6 year old buddy plays "Call of Duty" all the time.
Anyways, back to the IEP meeting...
That woman (the guidance counselor)!!! Unbelievable!!! Grrrrrrrr... I guess there's just no pleasing me I suppose, but that woman!!! Pardon the expression, but I hate it when people try to blow smoke up my butt!!!
Remember the email I had posted on the blog titled "Email to Ms. Cruella Deville, aka Dayton's Principal?" The one where I said "I walked away from the meeting feeling as though no matter what I say, there will always be that unspoken insinuation that at the core of of Dayton's behavior problem is my parenting. It has become exhausting to prove to your staff that I am a loving and caring parent, who is trying to instill values and morals in my child." Well, I think the principal had a little talk with her staff perhaps, because the guidance counselor started the meeting by telling me that she wanted me to know that the entire staff of the school had the utmost respect for me as a parent. That they were impressed with how I am always advocating for Dayton and that I refuse to give up on him. I sat there stunned, first at her claim of respect, second at the thought of giving up on my son?! How dare she voice that out loud? I'm not going to get into the profanities that had run through my head. This woman sat across the table from me, with this big fake smile on her face, putting on a show for whom? Certainly not me, she's made it abundantly clear that I am the scum at the bottom of her shoe by her past actions... Actions speak louder than words she was uttering now. I'm thinking she wanted to impress Brenda or the her boss from the school division? Or had the principal forced her to complement me? Either way, it was not genuine, and definitely not appreciated. If you respect me, then you will treat me and my child with respect at all times, not just in front of your employers!!! It took every ounce of strength not to reach across the table and wipe the smug grin off her face.
The show continued on with the guidance counselor telling us all how she thought about Dayton and I during her holidays... While cleaning out her basement, she had come across a book she used to read to her children, and this children's book reminded her of Dayton and I, then proceeded to read it to us all. Yes... she read us all a children's book during the IEP meeting. Every other IEP meeting we've had took half an hour, this IEP meeting took well over an hour and a half because the first half hour was spent on telling me how much the school staff respects me and reading a children's story... I had to leave an hour into the meeting to meet Dayton's bus. None of my questions about his IEP had been answered and the meeting turned into a non meeting as usual. Again, nothing is accomplished.
Turns out after I left the meeting to pick up Dayton, the guidance counselor showed her true colors to everyone present when Diana had asked for a meeting of all professionals involved in Dayton's education. The woman LOST it! Brenda had called me later to let me know that she refused to attend this meeting, and that her face turned red and her lips turned white in anger. Had it not been for the school child psychologist agreeing with Diana that this meeting is a good idea, the school would never had agreed to it. Their meeting is next Thursday, and I'm a little stressed over it. It's a meeting for professionals only, which means I am not to attend the meeting. If I could be a fly on the wall for this meeting... Brenda promised to put the guidance counselor in her place during this meeting if she is to exhibit the same type of behavior she had during the IEP meeting...
The guidance counselor also practically "sneered" at Brenda, telling her she knows I've been looking at other schools for Dayton. Brenda calmly gave the group an analogy of going to the same grocery store wanting to buy apples, but the store never carried apples. The store than should not be upset with you for visiting the grocery store next door to purchase your apples, should it? The St. James School Division only has one Occupational Therapist, and this therapist works for the whole division and works only part time, which is why Dayton has not received any therapy. Same goes for the speech and the physical therapist. If the school can not meet Dayton's needs, then we need to explore other schools, right?
Please consider a prayer for us.
Consider yourselves hugged!!!
Lou
Armed with Marni's pep talk and her image of Teflon, off I went to the Dayton's IEP meeting along with our CFS social worker, Brenda, who has been involved in our family strictly to advocate for Dayton's rights and education in the St. James School Division. Brenda's like a fire cracker, and I felt confident walking in with her along with Diana, Dayton's social worker for Children With Special Needs And Disabilities.
When we enter the board room, we are met by the school division's special needs co-ordinator. This will be the first time she'd sit it on any of Dayton's IEP meetings, thanks to to fire cracker social worker from CFS. Somehow, her word carries more weight than mine. There's also the school division's child psychologist, again, her first time involved in Dayton's IEP meeting as well. The Occupational Therapist and Speech Therapist are not available for the meeting. Surprise, surprise! The Occupational Therapist has only observed Dayton's classroom once, and the Speech Therapist has not yet seen Dayton, as far as I know. The principal, guidance counselor, Dayton's classroom teacher, his aid, and the resource teacher were also present.
The guidance counselor, a real piece of work, sits there with a fake smile on her face. Her and I do not get along. She seems to think I'm some how beneath her, and she thinks the same of my husband. She's the one who's called CFS on myself and my husband claiming that Dayton has access to Glen's hunting rifle, and that Dayton was going to come to school and shoot them all on the first call (the principal had also called the police), and the second time she called CFS because Dayton had cut a picture of a man bent over and another man with a paddle tapping his tushy. Apparently Dayton told them that "daddy paddles my butt" and they took him literally (who's autistic now?!). This guidance counselor is also the one that sent me the email I had posted on the blog asking me whether or not I feed Dayton breakfast... She thinks that Glen and I have created (and I quote) "a hostile environment" for Dayton at home by allowing him to play with water guns in the summer, Nerf guns all through the year and of course because Glen has played the "Call of Duty" video game with Dayton. While I am not a big fan of guns, and may not agree with Dayton playing "Call of Duty" with his dad, it doesn't seem to matter where we go: the play ground, the swimming pool, or his 6 year old buddy's house, we run into the same problem. The boys and girls at the swimming pool are playing with water guns, the boys on the playground have brought out their toy guns and his 6 year old buddy plays "Call of Duty" all the time.
Anyways, back to the IEP meeting...
That woman (the guidance counselor)!!! Unbelievable!!! Grrrrrrrr... I guess there's just no pleasing me I suppose, but that woman!!! Pardon the expression, but I hate it when people try to blow smoke up my butt!!!
Remember the email I had posted on the blog titled "Email to Ms. Cruella Deville, aka Dayton's Principal?" The one where I said "I walked away from the meeting feeling as though no matter what I say, there will always be that unspoken insinuation that at the core of of Dayton's behavior problem is my parenting. It has become exhausting to prove to your staff that I am a loving and caring parent, who is trying to instill values and morals in my child." Well, I think the principal had a little talk with her staff perhaps, because the guidance counselor started the meeting by telling me that she wanted me to know that the entire staff of the school had the utmost respect for me as a parent. That they were impressed with how I am always advocating for Dayton and that I refuse to give up on him. I sat there stunned, first at her claim of respect, second at the thought of giving up on my son?! How dare she voice that out loud? I'm not going to get into the profanities that had run through my head. This woman sat across the table from me, with this big fake smile on her face, putting on a show for whom? Certainly not me, she's made it abundantly clear that I am the scum at the bottom of her shoe by her past actions... Actions speak louder than words she was uttering now. I'm thinking she wanted to impress Brenda or the her boss from the school division? Or had the principal forced her to complement me? Either way, it was not genuine, and definitely not appreciated. If you respect me, then you will treat me and my child with respect at all times, not just in front of your employers!!! It took every ounce of strength not to reach across the table and wipe the smug grin off her face.
The show continued on with the guidance counselor telling us all how she thought about Dayton and I during her holidays... While cleaning out her basement, she had come across a book she used to read to her children, and this children's book reminded her of Dayton and I, then proceeded to read it to us all. Yes... she read us all a children's book during the IEP meeting. Every other IEP meeting we've had took half an hour, this IEP meeting took well over an hour and a half because the first half hour was spent on telling me how much the school staff respects me and reading a children's story... I had to leave an hour into the meeting to meet Dayton's bus. None of my questions about his IEP had been answered and the meeting turned into a non meeting as usual. Again, nothing is accomplished.
Turns out after I left the meeting to pick up Dayton, the guidance counselor showed her true colors to everyone present when Diana had asked for a meeting of all professionals involved in Dayton's education. The woman LOST it! Brenda had called me later to let me know that she refused to attend this meeting, and that her face turned red and her lips turned white in anger. Had it not been for the school child psychologist agreeing with Diana that this meeting is a good idea, the school would never had agreed to it. Their meeting is next Thursday, and I'm a little stressed over it. It's a meeting for professionals only, which means I am not to attend the meeting. If I could be a fly on the wall for this meeting... Brenda promised to put the guidance counselor in her place during this meeting if she is to exhibit the same type of behavior she had during the IEP meeting...
The guidance counselor also practically "sneered" at Brenda, telling her she knows I've been looking at other schools for Dayton. Brenda calmly gave the group an analogy of going to the same grocery store wanting to buy apples, but the store never carried apples. The store than should not be upset with you for visiting the grocery store next door to purchase your apples, should it? The St. James School Division only has one Occupational Therapist, and this therapist works for the whole division and works only part time, which is why Dayton has not received any therapy. Same goes for the speech and the physical therapist. If the school can not meet Dayton's needs, then we need to explore other schools, right?
Please consider a prayer for us.
Consider yourselves hugged!!!
Lou
Friday, 15 April 2011
Outcast Parent
I remember a time when I was just a mom without any worries about autism. That time was before Dayton was diagnosed, when life felt normal, like everyone else's life. I figured Dayton would make friends, be a typical teenager, go to college or university, get a job, get married, have kids of his own (I wanted 5 grand babies) and live life to the fullest, be a contributing member of society, and most importantly, be happy and successful.
I remember what my life felt like before the diagnosis. Why didn't I appreciate it more? Instead I worried about stupid things like finding the the best quality baby food, debating whether I should just make my own. My worries are so much greater now. Will Dayton make genuine friends, friends that care about him? Will he get married? Will he be able to hold down a job? Will he have the five grand babies I've dreamed about? Will he be independent? Will he have the means to take care of his family? Will he be able to function without my support? On "bad days," there seems to be one thought running through my head... I know what needs to happen. I just can't die. It's just not an option. Who else would take care of my babe?
I want that carefree feeling I had before the diagnosis. I'm thinking we both do, so I take my babe to the park!!! The park is literally in my back yard. I make a deal with myself that I will bring my camping chair and a book that has nothing to do with autism and read while he plays, you know, like the rest of them parent folk do. I will not sit there and assess Dayton's behavior and wonder how and when to "jump in" and intervene. I will foster his independence by trusting he will take care and remember the rules. I will talk with the other moms and join in their conversations. I will not let autism dominate my thoughts and I will relax and enjoy the company of moms my own age. "Hoooooo Raaaa!!!"
Before we head out the door, we must go over the rules:
“No touching anyone, keep your hands to yourself”
“No screaming”
“Find mom if you need help” etc.
I ask Dayton to repeat the rules back to me and check for understanding.
I grab my Kindle and chair and Dayton races ahead of me to the play structure. I take a big breath and think of how relaxing this outing will be. As I approach the play structure, a friendly woman says "hello."
“Hi” I introduce myself and point to Dayton "that one over there is Dayton."
“Dayton, yes of course. It’s nice to meet you.”
Dayton, yes of course... What does she mean by that? Does she know him? Does she know about his diagnosis?
“Stop it!” I tell myself as I unfold my chair. “Stop it right now!”
Two other women are seated on the super uncomfortable bench. They both turn and smile at me.
“We were just talking about St. Malo” a mom tells me. “Have you been there?”
“Oh yes, I love camping there, so much fun for the kids."
“That's right” she beams. “The kids go off on their own for hours while the adults hang out at the camp site. It's such a relaxing day." I'm thinking wow! Their kids might go off for hours and come back, but I'd probably never see mine again. I stamp the thought out of my mind and turn back to the conversation.
“And if you add a little more seasoning and put it back in the oven for another 30 minutes, it will be the best pot roast you've ever tasted” one of the women says.
Pot roast! They have time to make pot roast on a week day? Am I the worst mother ever?
I listen in amazement as the women around the table share their recipe secrets. By the time I've finished prodding my son to do simple tasks all day long, I can barely remember my name I'm so tired. Cooking a pot roast would not be on my list of things to do.
With nothing to add about pot roasts, I turn towards the play structure to see how my babe is making out. Sitting at the end of the slide happily arranging his pokemon cards, he appears completely oblivious that every other child is playing tag. I resist the urge to go over and prompt him to participate.
“Focus” I tell myself. “It's time to relax.”
The conversation has turned to homework. Now here's something I can talk about! “Can you believe how much homework they get?” one of the mothers says.
“I know!” I chime in.
“I'm thrilled about it” says the short one. “It keeps him off his video games and gives me time to make dinner.”
“That's true” adds the third one. “I use the time to do laundry. Every now and then Stuart has a question but for the most part, he does his work on his own.”
I'm frozen in shock! What? Did they just say they use this time for themselves? Did I hear that correctly? My mind drifts to our homework sessions. Armed with motivators and lots of patience, I coerce my babe to complete his homework every day. After an hour of prompting, presenting questions in different ways, silly diagrams and theatrics to keep Dayton interested, homework is finally done. He races off to his video games while I stare vacantly into space, too exhausted and emotionally drained to move for the next five minutes.
I snap out of my trance and smile. The women are chattering about their children asking for cell phones and wanting Facebook accounts. But I can't relate to any of it and I'm bored. It's as if I’ve been dropped here from a distant land, with a culture so foreign that we might as well be speaking a different language. Think it's time to go. I announce to Dayton he has 10 minutes left to play. Then 8, then 5, then 3, then 1 minute left. I'm sure the women behind me think I'm nuts.
While I'm saying my goodbyes, Dayton begins to stim and flaps his hands while doing a little jig. I think it was the first mom that spoke to me that stared at Dayton incredulously, and not being able to resist, she glances at one of her friends as in “Are you seeing this weird behavior?” Part of me tries not to think of their conversation when I leave and the other part of me doesn't care.
Walking home, I ask my babe if he had a good time.
“Great” he says. Looking at his delighted face my heart feels like it might just burst. In his pure innocence and naivete, it never occurs to him that people might judge or gossip about him. Why would it? He accepts and commends others just as they are. The world might think he should change his ways but my son doesn't care. He's not out to impress. People spend a lot of money on workshops trying to develop that kind of self confidence.
With a smile on my face I hold his hand. It's true, sometimes I long for my fantasy world where I have time to cook pot roasts and relax in a park while my son plays with his peers. I don't have that luxury but my son has enriched my life in so many ways. With a new perspective I have developed a compassion and respect for people with differences that wasn't present before. There was a time when I looked upon people with challenges in pity. Now I desire to know them and discover their depth within. Now I strive to make a positive difference in other people's lives. My son has made me a better person. It has come with a price and plenty rewards but I am grateful because I wouldn't want it any other way.
As my dad always says, consider yourselves hugged,
Lou
I remember what my life felt like before the diagnosis. Why didn't I appreciate it more? Instead I worried about stupid things like finding the the best quality baby food, debating whether I should just make my own. My worries are so much greater now. Will Dayton make genuine friends, friends that care about him? Will he get married? Will he be able to hold down a job? Will he have the five grand babies I've dreamed about? Will he be independent? Will he have the means to take care of his family? Will he be able to function without my support? On "bad days," there seems to be one thought running through my head... I know what needs to happen. I just can't die. It's just not an option. Who else would take care of my babe?
I want that carefree feeling I had before the diagnosis. I'm thinking we both do, so I take my babe to the park!!! The park is literally in my back yard. I make a deal with myself that I will bring my camping chair and a book that has nothing to do with autism and read while he plays, you know, like the rest of them parent folk do. I will not sit there and assess Dayton's behavior and wonder how and when to "jump in" and intervene. I will foster his independence by trusting he will take care and remember the rules. I will talk with the other moms and join in their conversations. I will not let autism dominate my thoughts and I will relax and enjoy the company of moms my own age. "Hoooooo Raaaa!!!"
Before we head out the door, we must go over the rules:
“No touching anyone, keep your hands to yourself”
“No screaming”
“Find mom if you need help” etc.
I ask Dayton to repeat the rules back to me and check for understanding.
I grab my Kindle and chair and Dayton races ahead of me to the play structure. I take a big breath and think of how relaxing this outing will be. As I approach the play structure, a friendly woman says "hello."
“Hi” I introduce myself and point to Dayton "that one over there is Dayton."
“Dayton, yes of course. It’s nice to meet you.”
Dayton, yes of course... What does she mean by that? Does she know him? Does she know about his diagnosis?
“Stop it!” I tell myself as I unfold my chair. “Stop it right now!”
Two other women are seated on the super uncomfortable bench. They both turn and smile at me.
“We were just talking about St. Malo” a mom tells me. “Have you been there?”
“Oh yes, I love camping there, so much fun for the kids."
“That's right” she beams. “The kids go off on their own for hours while the adults hang out at the camp site. It's such a relaxing day." I'm thinking wow! Their kids might go off for hours and come back, but I'd probably never see mine again. I stamp the thought out of my mind and turn back to the conversation.
“And if you add a little more seasoning and put it back in the oven for another 30 minutes, it will be the best pot roast you've ever tasted” one of the women says.
Pot roast! They have time to make pot roast on a week day? Am I the worst mother ever?
I listen in amazement as the women around the table share their recipe secrets. By the time I've finished prodding my son to do simple tasks all day long, I can barely remember my name I'm so tired. Cooking a pot roast would not be on my list of things to do.
With nothing to add about pot roasts, I turn towards the play structure to see how my babe is making out. Sitting at the end of the slide happily arranging his pokemon cards, he appears completely oblivious that every other child is playing tag. I resist the urge to go over and prompt him to participate.
“Focus” I tell myself. “It's time to relax.”
The conversation has turned to homework. Now here's something I can talk about! “Can you believe how much homework they get?” one of the mothers says.
“I know!” I chime in.
“I'm thrilled about it” says the short one. “It keeps him off his video games and gives me time to make dinner.”
“That's true” adds the third one. “I use the time to do laundry. Every now and then Stuart has a question but for the most part, he does his work on his own.”
I'm frozen in shock! What? Did they just say they use this time for themselves? Did I hear that correctly? My mind drifts to our homework sessions. Armed with motivators and lots of patience, I coerce my babe to complete his homework every day. After an hour of prompting, presenting questions in different ways, silly diagrams and theatrics to keep Dayton interested, homework is finally done. He races off to his video games while I stare vacantly into space, too exhausted and emotionally drained to move for the next five minutes.
I snap out of my trance and smile. The women are chattering about their children asking for cell phones and wanting Facebook accounts. But I can't relate to any of it and I'm bored. It's as if I’ve been dropped here from a distant land, with a culture so foreign that we might as well be speaking a different language. Think it's time to go. I announce to Dayton he has 10 minutes left to play. Then 8, then 5, then 3, then 1 minute left. I'm sure the women behind me think I'm nuts.
While I'm saying my goodbyes, Dayton begins to stim and flaps his hands while doing a little jig. I think it was the first mom that spoke to me that stared at Dayton incredulously, and not being able to resist, she glances at one of her friends as in “Are you seeing this weird behavior?” Part of me tries not to think of their conversation when I leave and the other part of me doesn't care.
Walking home, I ask my babe if he had a good time.
“Great” he says. Looking at his delighted face my heart feels like it might just burst. In his pure innocence and naivete, it never occurs to him that people might judge or gossip about him. Why would it? He accepts and commends others just as they are. The world might think he should change his ways but my son doesn't care. He's not out to impress. People spend a lot of money on workshops trying to develop that kind of self confidence.
With a smile on my face I hold his hand. It's true, sometimes I long for my fantasy world where I have time to cook pot roasts and relax in a park while my son plays with his peers. I don't have that luxury but my son has enriched my life in so many ways. With a new perspective I have developed a compassion and respect for people with differences that wasn't present before. There was a time when I looked upon people with challenges in pity. Now I desire to know them and discover their depth within. Now I strive to make a positive difference in other people's lives. My son has made me a better person. It has come with a price and plenty rewards but I am grateful because I wouldn't want it any other way.
As my dad always says, consider yourselves hugged,
Lou
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