There's so much controversy over whether or not a child needs medication. I believe I've blogged about this before, but I need to do it again.
So many parents out there are afraid to use medication to help in the symptom management of ADHD, aggression, and anxiety, all running comorbid along with autism spectrum disorders. I happen to be one of those parents. So when I hear someone is struggling with whether or not to put their child on medication, my heart breaks for the parent in turmoil. There is nothing scarier than being responsible for someone else's health and wellness, especially when that someone else is a child you love beyond words. If anything were to happen to our children because of the choices we've made for our babies, we would never be able to forgive ourselves. I know for myself, I certainly wouldn't. My children's health and safety come first and foremost in my life.
Some of you already know I'm a pharmacy technician, and some of you are just learning this now. You would think given my career choice I would be comfortable in administering any new medication a professional prescribed for my children. I'm not. Knowing about medication makes it even harder to administer it to your child. Sometimes ignorance truly is bliss.
ADHD has been diagnosed and overdiagnosed for decades now. Things really have changed since I was a little one in elementary school. While growing up in a strict Eastern European land required children didn't speak until spoken to, we were still children. We wanted to run, jump, scream and climb our way out of the classroom. Summer time was filled with the village children (yup, I wasn't always a big city gal) running through the corn fields, up and down our steep hills and mountain terrain (no hill billy bashing now) and climbing up fruit and nut trees, with many falls to the ground. No need to make fun of me, we've already established I'm not the most graceful gal in the city. My point is, our behavior at the time was considered normal, yet if these same children who were considered normal 25 (give or take a few years... fine, 30!) years ago were still children today, they would be labelled as having ADHD. Today's classrooms have no room for the fidgety kid who's body is telling him to shake his leg or interrupt the teacher because she's afraid she will forget her idea if she waits any longer, or the kid who's constantly leaving the classroom for "bathroom breaks," fully understanding the cute little girl doesn't really need to use the washroom seven times an hour.
Our kiddos school curriculum has changed drastically from what mine was in elementary school, and not just because I grew up on a farm folks. It's really, really changed. I think there's a reason why we now can watch "Are You Smarter Than A 5th Grader" on TV. How many of you are laughing at the adult not being able to answer the question, being outsmarted by a little kid to save face, meanwhile thinking to yourself, "oh my... I'm stealing my kid's textbooks, they gotta sleep sometime, right?" And teachers... My youngest daughter is seven years old. Her teacher happens to have taught her older sisters too... The oldest is twenty years old folks. And she's no where near ready to retire. She has been teaching for a very long time. And she's kept up with the changing curriculum and had to teach herself along the way too. They didn't have computers in classrooms twenty years ago, but they sure do now! I have a lot of respect for teachers, they go with the flow and learn as they go. I'm not sure I can say the same for me. I got my first computer in 2006. Yup, that's just eight years ago. I'm one of those people like my grandmother: "Oh, it's just a phase, it won't last long. People won't be able to afford this gadget down the road." I had the same thoughts for mp3 players, iPod's, blue ray disks... Anyway, I'm getting off track here. The point I'm trying to make is children's expectations have been raised to a whole new standard. I really, truly believe this new standard demands our kiddos sit still and pay 100% attention, because if they don't, they will get lost. Big time. Teachers don't have time to spend individual time with 30 students or more, unlike our teachers who had maybe 15 to 20 students (shaking my head at you, I know exactly what you're thinking). And so could this be the reason why there is a rise in ADHD diagnoses? If so, parents out there are fearful their own child must have been misdiagnosed; and if their child has been misdiagnosed why give them medication that may be harmful... How could they possibly live with themselves?
I hear a lot of stories of middle aged men, telling me how they used to be on Ritalin, and they hated it. But then why do they come to the pharmacy to fill a prescription for a different brand or Ritalin? It makes me want to scream: "Ritalin is Ritalin people!!!" And some of these men (yes, there is a higher percentage of males diagnosed with ADHD then females) I've met through PACE and they no longer take anything for their symptoms because they didn't feel great on their medication. But even as the kid's curriculum has changed over the years, so has Ritalin. It comes in different brand names now, because the manufacturers have tweaked it. They've made it last longer, then they made another one with two releases of Ritalin a day, then yet another one with three releases a day... Longer lasting, smaller dosing, tablet to capsule full of little capsules and even smaller capsules, caplets, patches, etc. And you better believe the makers of these drugs are making a ton of money. Sure they are.
I suffered through some bouts of dizziness about two months ago, and felt I needed to see a doctor. My 16 year old daughter Katie had been coughing for a bit, so I decided to take her with me for a check up as well. Katie has a hard time describing symptoms, she just tells us she's sick and then it's up to Mike and I to try and figure out what her ailment is. The doctor examined Katie, and agreed Katie was fighting through a virus, but she saw quite a bit of discharge in the back of her throat. She was also concerned of Katie complaining of chest tightness. A Ventolin inhaler was prescribed.
Ventolin is typically prescribed as "inhale 2 puffs four times daily as needed," so at 200 puffs per inhaler, the ventolin should last a patient at least 25 days. The key words here are "at least." The key words in the prescription are "as needed." This means you only use it if you need it! So when a patient comes back to the pharmacy for a refill two weeks after they filled their first fill, we become concerned the patient is abusing their ventolin. Yes, I said abusing. "What the... how on earth would someone abuse a prescription medication used to treat breathing problems, especially in people with asthma or COPD??? It's not like it's a controlled substance like Ritalin, right?"
True, Ventolin is not a controlled substance, but it CAN have a STIMULATORY effect. (Ritalin is a stimulant). Stimulants CAN increase blood pressure and heart rate. Because Ventolin in a sense is a stimulant, it has been abused to lose weight and increase athletic performance. Obviously it is not approved for either of these uses, Overuse of Ventolin may cause some serious medical side effects: hypertension (high blood pressure), tachychardia (very fast heart beat), and arrhythmias (irregular heart beat), In turn, these "side effects" increase your chance of stroke and heart attack. Key word here is OVERUSE.
Given my knowledge on Ventolin, I hesitated and wanted to wait until we saw Katie's pediatrician. Maybe her cough would clear on it's own. As you know, it takes time to get it to see a pediatrician. I was hoping to see if her cough went away on it's own. It didn't, and the pediatrician informed us Katie had mild asthma, and recommended we go ahead and try the inhaler.
I know about Ventolin, but I also trust Dr. Goldberg knows about Ventolin too. I trust him to know how Katie's health would be affected without the Ventolin, and trust him to have considered the Ventolin therapy to outweigh the medical side effects.
My responsibility as a parent is to work within Dr. Godlberg's guidelines and closely supervise Katie's use of Ventolin to ensure she doesn't overuse it. Overusing the Ventolin will put her at health at risk. I am not micromanaging my daughter, she is quite impaired by her autism and I need to ensure her safety. Am I scared? Absolutely! I'm keeping a close eye on my girl, and she can't stand it. Katie is 16 and whether she is delayed or not, in her mind she is almost an adult. Having mommy and daddy watch her like a child is just not cool. We try to be discreet, but we're not always successful. We're not perfect, but we love our Katie very much.
So, if you're a parent on the fence about how to go about treating your child with ADHD, I have a couple of questions for you.
If your child was diagnosed with asthma, would you fill her prescription for Ventolin? Would you take your chances with a potentially fatal asthma attack? What would a good mom do?
If your child was diagnosed with juvenile diabetes, would you give him his prescribed insulin? Would you let his blood sugars sky rocket out of control and discipline his blood sugars down to a healthy level?
A health professional will not suggest the use of medications without weighing the benefits of therapy versus the risk of side effects, nor will a health professional suggest medication if he or she didn't think your child needs it. I know it's hard, it feels like you're giving up on your babe, and that's an impossible feeling to get comfortable with. I've been there and struggled with my children.myself in the struggle to medicate or not to medicate. It's not an easy decision. But it's also not your to make. "Say whaaaaaaaat???"
You can not just pick a doctor out of the yellow pages (do those still exist? You know, the book ones?), see the doctor and demand Ritalin. I suppose one could demand it, but I assure you, no doctor will risk his license and trust you when you bat your eye lashes at him and tell him your child or you yourself have ADHD, therefore he should do as you say and write out a stimulant prescription. There are laws against this type of behavior. Doctors are governed by the College of Physicians and Surgeons, and they can revoke a doctor's license. I can not speak of doctor's requirements in writing a tripplicate prescription, but here is a link to check out what we do in pharmacy when we get a tripplicate prescription:
http://mpha.in1touch.org/uploaded/38/web/Revised%20M3P%20Qand%20A%202013.pdf
Pediatricians are met with numerous times, schools are often involved with their reports and concerns on said child, checklists are completed both by schools/daycares and parents before a diagnosis of ADHD is given. Even with a diagnosis, a pediatrician may decide medication is not necessary or the medication would put a child at a higher medical risk then giving him none, even if the parent feels their child should be prescribed something to "calm them down."
If you're struggling with the decision to medicate or not to medicate, speak with your child's pediatrician. Let her tell you her professional opinion on risks versus benefits of using medication for YOUR child. That is why we have medical professionals, otherwise we would all hold an MD.
I'm not a professional, so I'm afraid I can not comment more than what I've already written, nor can I advise you on what to do. What I can say is you're not alone. I've shed many a tears on this subject. I've felt like a failure to my babes, felt like I was betraying them to "big pharma," but in the end, it wasn't my decision to make. I didn't go shopping for the ADHD part of my childrens' diagnoses, just as I didn't go buy my girls' hearing loss. God created my children in his image. He tells me this in his word. I don't particularly like it, but I have accepted it.
Consider yourselves hugged,
Lou, Mike and family
Showing posts with label schools. Show all posts
Showing posts with label schools. Show all posts
Monday, 24 November 2014
Tuesday, 27 March 2012
Hmmmm... Why Not Just Castrate Them?
All right, I'll admit it. Perhaps the title is a wee bit drama queen'ish, but I am after all a DIVA. That's why our blog is called Autism DIVA Help. A little help for you, a little help for me, and everyone gets a hug at the end of the post. Yes, even the men. You may now uncross your legs. I'm not on a man hating mission, I'm on a man SAVING mission.
That's right, the Diva is wanting to save men, you read it right. I know... shocking as you probably think I hate men with a passion. This is not true, I love men. This is why I have so much trouble with them. My son is a male, so to hate men would mean I hate my son, and y'all know that could be farther from the truth. Also, my "dad" Paul Humphreys has been a blessing in my life, and is one of the most amazing people I have had the pleasure of knowing. And he's a man.
Let's get to the point.
Schools and society are emasculating our sons and I'm sick of it.
A little harsh? I don't think so.
Remember when we were kids? I do. I was a tom boy, and my mom and dad were far from rich. They owned their own home. That's where the money ended. They both worked their butts off, day and night. As a result, I had to learn how to cook (burn food would describe it far better) at an early age.
Did I ever play house? Yup, sure did. Did I play with barbies? Yup, my neighbour had two and she shared hers with me. I had a bike, thanks to my grandma Barcic, and a deflated soccer ball. We lived across a large field, and that's where I played soccer with the neighbourhood kids. Soccer and... wait for it...
Cowboys and Indians. Cops and Robbers. Partisans and Nazi's. Growing up in communist Slovenija, World War II was talked about often. Especially Tito. Anyways... my point is that we pretended to shoot each other. If we didn't have toy guns (which was my case), we (I) picked up a stick and pretended it was a rifle or gun. "Ratatatapow."
Have I shot a real rifle? Yes, my dad taught me when I was 8 years old. Have I killed anyone when I grew up? NOPE. I'd be lying if I said I haven't thought about it. I once held a pillow over Glen's face when he slept, but the gurgling made me feel guilty and I quit (KIDDING!!!... or am I???). Have I threatened to kill anyone? NOPE. Do I own a gun? NOPE. Have I brought a gun to school or my work place? (I can almost hear my past employers holding their breath... wonder if I should answer this one...)? Relax, NOPE. Have I thought of shooting an employer, co-worker, ex boyfriends, ex friends, etc? NOPE. Sure haven't. (Is that a sigh of relief I hear?) Am I a violent person? NOPE. Just keep your distance from my son and I'll behave like a perfect lady. Even when a daycare and school physically abused my son, I didn't lay a finger on anyone responsible for hurting my babe. This is where you need to go back to the beginning of this paragraph where I say I've thought about killing someone, or at the very least, maiming someone.
Nowadays, boys are not allowed to play or pretend to play with guns anymore. Video games depicting guns are frowned upon. I don't know how many times Dayton's school insinuated that I was an unfit parent because Dayton's father "exposed" him to violent video games. Isn't it funny how that works? Glen does it, I get blamed for it. I even have a copy of Dayton's level III funding application where the guidance counsellor states that I EXPOSED DAYTON TO VIOLENT VIDEO GAMES... made Dayton's home a "hostile environment" during a difficult time in my marriage... among other things... Ugh...
Nowadays, our boys are expected to sit pretty at their desks at school the whole day, unless of course it's time to hit the gym. And if your child fits on the autism spectrum... or has ADHD... prepare to receive the worst parent's award of the month, every month.
I remember sitting through a service in which the pastor stopped his sermon and addressed his congregation. He said: "gentlemen, let's face it. We all married 'up.' Ladies, please, bear with your husbands. There is scientific proof that the human fetus, up until about six to seven weeks after conception is technically FEMALE. After the said six to seven weeks, the embryo that has inherited the 'Y' chromosome endures a hormonal bath which actually damages their brain and alters its structure. You could say we're brain damaged ladies!!!"
The hormone the pastor talked about is called testosterone. Testosterone is the hormone responsible for social dominance. All throughout history, even the caveman days, it was the male that was the dominant force in society, not the female. The men went out and hunted, fought for territory, were builders, made weapons, fought wars and physically protected what was theirs. The women were the maintainers and caretakers of their home and family.
Hormones dictate how we relate to each other. Numerous experts believe boys are more assertive, take risks, fight, argue, and their determination to live on the edge of disaster is linked to testosterone AND to the way their brain has been altered during their hormonal bath in utero. It is also responsible for boys' desire from a very, very early age (toddler hood) to be the toughest, bravest, rootin-shootin hombre in the west. Or the strongest soldier fighting for our freedom. This is the way GOD made them!!!
I am NOT a fan of guns, at least not now as an adult. Would I prefer my son be passive and sit all day to make my life easier? Absolutely. There are days where I'd just like to RELAX... But let's face it. Boys are not born to sit around. They're meant to run, jump, play recklessly, wrestle, and be loud. Now let's add PDD-NOS, ADHD, OCD and ODD to the mix. Booyah! There is NO rest, PERIOD. Autism is pretty much family traits intensified by 100. So, Dayton's a boy (which means he's naturally not able to sit around as it is) with autism (holly crap, hang on tight and fasten your seat belts, because we gotta multiply the squirminess by 100). Let's not forget Dayton's OCD... meaning he perseverates over things like guns... and being a boy... and SpongeBob... and missing the toilet... grrr...
What is the alternative here? Shave his legs, put him in a dress and call him Daytona? NOT!!! Have my boy 'snipped?' NOT!!!
Whether I like it or not, whether the school system likes it or not, my boy is ALL BOY. So are the other boys out there. Short of castrating them so they stop producing testosterone, there is nothing else for us to do but to ACCEPT the fact that they are BOYS. And we need our boys!!!
Have you ever googled emasculation of men? I dare you. It's all about castration. In a sense, this is what society is doing to our kids, but expecting boys to behave like GIRLS!!!
Consider yourselves hugged,
Lou
That's right, the Diva is wanting to save men, you read it right. I know... shocking as you probably think I hate men with a passion. This is not true, I love men. This is why I have so much trouble with them. My son is a male, so to hate men would mean I hate my son, and y'all know that could be farther from the truth. Also, my "dad" Paul Humphreys has been a blessing in my life, and is one of the most amazing people I have had the pleasure of knowing. And he's a man.
Let's get to the point.
Schools and society are emasculating our sons and I'm sick of it.
A little harsh? I don't think so.
Remember when we were kids? I do. I was a tom boy, and my mom and dad were far from rich. They owned their own home. That's where the money ended. They both worked their butts off, day and night. As a result, I had to learn how to cook (burn food would describe it far better) at an early age.
Did I ever play house? Yup, sure did. Did I play with barbies? Yup, my neighbour had two and she shared hers with me. I had a bike, thanks to my grandma Barcic, and a deflated soccer ball. We lived across a large field, and that's where I played soccer with the neighbourhood kids. Soccer and... wait for it...
Cowboys and Indians. Cops and Robbers. Partisans and Nazi's. Growing up in communist Slovenija, World War II was talked about often. Especially Tito. Anyways... my point is that we pretended to shoot each other. If we didn't have toy guns (which was my case), we (I) picked up a stick and pretended it was a rifle or gun. "Ratatatapow."
Have I shot a real rifle? Yes, my dad taught me when I was 8 years old. Have I killed anyone when I grew up? NOPE. I'd be lying if I said I haven't thought about it. I once held a pillow over Glen's face when he slept, but the gurgling made me feel guilty and I quit (KIDDING!!!... or am I???). Have I threatened to kill anyone? NOPE. Do I own a gun? NOPE. Have I brought a gun to school or my work place? (I can almost hear my past employers holding their breath... wonder if I should answer this one...)? Relax, NOPE. Have I thought of shooting an employer, co-worker, ex boyfriends, ex friends, etc? NOPE. Sure haven't. (Is that a sigh of relief I hear?) Am I a violent person? NOPE. Just keep your distance from my son and I'll behave like a perfect lady. Even when a daycare and school physically abused my son, I didn't lay a finger on anyone responsible for hurting my babe. This is where you need to go back to the beginning of this paragraph where I say I've thought about killing someone, or at the very least, maiming someone.
Nowadays, boys are not allowed to play or pretend to play with guns anymore. Video games depicting guns are frowned upon. I don't know how many times Dayton's school insinuated that I was an unfit parent because Dayton's father "exposed" him to violent video games. Isn't it funny how that works? Glen does it, I get blamed for it. I even have a copy of Dayton's level III funding application where the guidance counsellor states that I EXPOSED DAYTON TO VIOLENT VIDEO GAMES... made Dayton's home a "hostile environment" during a difficult time in my marriage... among other things... Ugh...
Nowadays, our boys are expected to sit pretty at their desks at school the whole day, unless of course it's time to hit the gym. And if your child fits on the autism spectrum... or has ADHD... prepare to receive the worst parent's award of the month, every month.
I remember sitting through a service in which the pastor stopped his sermon and addressed his congregation. He said: "gentlemen, let's face it. We all married 'up.' Ladies, please, bear with your husbands. There is scientific proof that the human fetus, up until about six to seven weeks after conception is technically FEMALE. After the said six to seven weeks, the embryo that has inherited the 'Y' chromosome endures a hormonal bath which actually damages their brain and alters its structure. You could say we're brain damaged ladies!!!"
The hormone the pastor talked about is called testosterone. Testosterone is the hormone responsible for social dominance. All throughout history, even the caveman days, it was the male that was the dominant force in society, not the female. The men went out and hunted, fought for territory, were builders, made weapons, fought wars and physically protected what was theirs. The women were the maintainers and caretakers of their home and family.
Hormones dictate how we relate to each other. Numerous experts believe boys are more assertive, take risks, fight, argue, and their determination to live on the edge of disaster is linked to testosterone AND to the way their brain has been altered during their hormonal bath in utero. It is also responsible for boys' desire from a very, very early age (toddler hood) to be the toughest, bravest, rootin-shootin hombre in the west. Or the strongest soldier fighting for our freedom. This is the way GOD made them!!!
I am NOT a fan of guns, at least not now as an adult. Would I prefer my son be passive and sit all day to make my life easier? Absolutely. There are days where I'd just like to RELAX... But let's face it. Boys are not born to sit around. They're meant to run, jump, play recklessly, wrestle, and be loud. Now let's add PDD-NOS, ADHD, OCD and ODD to the mix. Booyah! There is NO rest, PERIOD. Autism is pretty much family traits intensified by 100. So, Dayton's a boy (which means he's naturally not able to sit around as it is) with autism (holly crap, hang on tight and fasten your seat belts, because we gotta multiply the squirminess by 100). Let's not forget Dayton's OCD... meaning he perseverates over things like guns... and being a boy... and SpongeBob... and missing the toilet... grrr...
What is the alternative here? Shave his legs, put him in a dress and call him Daytona? NOT!!! Have my boy 'snipped?' NOT!!!
Whether I like it or not, whether the school system likes it or not, my boy is ALL BOY. So are the other boys out there. Short of castrating them so they stop producing testosterone, there is nothing else for us to do but to ACCEPT the fact that they are BOYS. And we need our boys!!!
Have you ever googled emasculation of men? I dare you. It's all about castration. In a sense, this is what society is doing to our kids, but expecting boys to behave like GIRLS!!!
Consider yourselves hugged,
Lou
Wednesday, 14 March 2012
Blessed Be The Name Of The Lord
I keep hearing this song over and over and over in my mind lately: "Blessed be the name of the Lord, blessed be Your name: JESUS, blessed be the name of the Lord, blessed be Your glorious name..."
A very dear friend to my heart had messaged me via facebook and apologized for not meeting me for coffee when he had the chance. In his message to me, well... I should just share a part of it...
"I read your blog, I read your (facebook) status updates... it is amazing to me what you have in your past and in your present been through, and do you give up... hell no, you raise to the challenge..."
I had taken a few days to mull over what he was saying to me, but naturally, the man was impatient and wanted a response. I wasn't quite ready to respond, but felt I had to and hurt my my dear friend's feelings...
I had to keep reading the above paragraph over and over and the more I read it, the more intimidated I got by the woman my friend was talking about. I mean, wow, she seems really amazing! But this woman is not me. I'm not strong, not at all. I'm just as whiny and irritated by life as the next woman. Just ask Dayton's dad. Well, maybe don't. He'll tell you horror stories and y'all gonna think I'm nuts... Isn't it funny how two people can look at the exact same person and see someone totally different? Glen wonders out loud when "they're" going to name a hurricane after me, and then there's my dear friend Dan who thinks I'm this amazing, wonderful human being... Then there's me who knows the truth: I always carry a little crazy with me. You just never know when it's going to come in handy, ya'know?
Anyways... My point. Menopause brain at it's finest here... My point is that I'm not alone, EVER. I'm always praying. And say what you will about God having been taken out of schools, at the end of the day, as long as students are being tested, people will be praying. Not just the students taking the test, but the moms and dads out there and teachers too! Many people out there who have professed to not believe in God, sure call His name out often. Me thinks they be called hypocrites.
No matter what I do during the course of the day, I silently pray for guidance. There are days where I want to hurt people's feelings with a chainsaw, but I remind myself that that's just not appropriate and I must obey the Lord. Remember those bracelets kids used to wear, reminding them "what would Jesus do?" I think we need to bring those back. I've fallen off the wagon, especially with Glen, and snapping that bracelet would put me back in check.
I think that sometimes, you need to step outside of the person you've been, and think about the person God has meant for you to be. You know, the person you WANT to be - the person you truly are once stripped down to your naked self. Remind yourself of what is truly important in your life. Reach way, way down, and you will know it. It may take some time, but you'll get there.
It turns out that for me, my relationship with God is far more important than my relationships with people. I have made a real mess of things when I worry about others liking me, but when I focus on pleasing God, and doing what I can to be likeable to Him, others tend to like me more than they had when I worked really hard at getting them to like me. My relationship with God is unconditional, He never leaves my side. I talk to him all the time. This relationship is what gives me what I need to keep going. I don't have a choice. I can't just give up and walk away, it's not something God would want me to do.
My struggles with accepting autism as a way of life for my family could not have been overcome without the guidance of the Lord. He gives me strength and helps me accept what I can not change. I trust that He gives me what I need, and provides me only with what I need. So, I guess that makes me low maintenance? Hahaha! The more I pray, the more at peace I am.
So, my response back to Dan, well part of it:
"Dayton is the air I breath, and I would die for him. Whatever he needs, I will always provide, no matter what. He always comes first. And let's not forget about God. With Him, all things are possible. I truly believe God has a purpose for my son, something incredible. I know that this autism thing has a higher purpose, and that my struggle is not in vain. You know what I mean? I think God gives us "opportunities," and some of them are pretty tough, but it's up to us to take these "opportunities" and either make something out of them or crash and burn. I choose to make something out of this for Dayton and I, make a life that we can reflect back to God. I prayed for a son, and He gave me one, and I swore that I would give my son right back to him. God's given me a beautiful son, and it's my job to raise him in His image...
Thank you for thinking of me and encouraging me. I especially thank you for your prayers... God is hearing them, as my life with Dayton is good!!"
As my dad Paul Humphreys taught me to say: Consider yourselves hugged!
Lou
A very dear friend to my heart had messaged me via facebook and apologized for not meeting me for coffee when he had the chance. In his message to me, well... I should just share a part of it...
"I read your blog, I read your (facebook) status updates... it is amazing to me what you have in your past and in your present been through, and do you give up... hell no, you raise to the challenge..."
I had taken a few days to mull over what he was saying to me, but naturally, the man was impatient and wanted a response. I wasn't quite ready to respond, but felt I had to and hurt my my dear friend's feelings...
I had to keep reading the above paragraph over and over and the more I read it, the more intimidated I got by the woman my friend was talking about. I mean, wow, she seems really amazing! But this woman is not me. I'm not strong, not at all. I'm just as whiny and irritated by life as the next woman. Just ask Dayton's dad. Well, maybe don't. He'll tell you horror stories and y'all gonna think I'm nuts... Isn't it funny how two people can look at the exact same person and see someone totally different? Glen wonders out loud when "they're" going to name a hurricane after me, and then there's my dear friend Dan who thinks I'm this amazing, wonderful human being... Then there's me who knows the truth: I always carry a little crazy with me. You just never know when it's going to come in handy, ya'know?
Anyways... My point. Menopause brain at it's finest here... My point is that I'm not alone, EVER. I'm always praying. And say what you will about God having been taken out of schools, at the end of the day, as long as students are being tested, people will be praying. Not just the students taking the test, but the moms and dads out there and teachers too! Many people out there who have professed to not believe in God, sure call His name out often. Me thinks they be called hypocrites.
No matter what I do during the course of the day, I silently pray for guidance. There are days where I want to hurt people's feelings with a chainsaw, but I remind myself that that's just not appropriate and I must obey the Lord. Remember those bracelets kids used to wear, reminding them "what would Jesus do?" I think we need to bring those back. I've fallen off the wagon, especially with Glen, and snapping that bracelet would put me back in check.
I think that sometimes, you need to step outside of the person you've been, and think about the person God has meant for you to be. You know, the person you WANT to be - the person you truly are once stripped down to your naked self. Remind yourself of what is truly important in your life. Reach way, way down, and you will know it. It may take some time, but you'll get there.
It turns out that for me, my relationship with God is far more important than my relationships with people. I have made a real mess of things when I worry about others liking me, but when I focus on pleasing God, and doing what I can to be likeable to Him, others tend to like me more than they had when I worked really hard at getting them to like me. My relationship with God is unconditional, He never leaves my side. I talk to him all the time. This relationship is what gives me what I need to keep going. I don't have a choice. I can't just give up and walk away, it's not something God would want me to do.
My struggles with accepting autism as a way of life for my family could not have been overcome without the guidance of the Lord. He gives me strength and helps me accept what I can not change. I trust that He gives me what I need, and provides me only with what I need. So, I guess that makes me low maintenance? Hahaha! The more I pray, the more at peace I am.
So, my response back to Dan, well part of it:
"Dayton is the air I breath, and I would die for him. Whatever he needs, I will always provide, no matter what. He always comes first. And let's not forget about God. With Him, all things are possible. I truly believe God has a purpose for my son, something incredible. I know that this autism thing has a higher purpose, and that my struggle is not in vain. You know what I mean? I think God gives us "opportunities," and some of them are pretty tough, but it's up to us to take these "opportunities" and either make something out of them or crash and burn. I choose to make something out of this for Dayton and I, make a life that we can reflect back to God. I prayed for a son, and He gave me one, and I swore that I would give my son right back to him. God's given me a beautiful son, and it's my job to raise him in His image...
Thank you for thinking of me and encouraging me. I especially thank you for your prayers... God is hearing them, as my life with Dayton is good!!"
As my dad Paul Humphreys taught me to say: Consider yourselves hugged!
Lou
Monday, 27 February 2012
Happy Anniversary Autism Diva Help
It's been a year now since I started Autism Diva Help. Looking back, I remember a scared mom, wondering if she can make a difference of any kind in this corner of the world. I honestly didn't think I could do this. My friend Dani on the other hand, never doubted me. She kept telling me to do this, and I tried (well, kind of) and just kept giving up.
See, I kept thinking that it was so easy for Dani to tell me to "just do it," as she is an amazing writer, and she's not only a blogger, but a published writer. She can do things on a computer that would "google" your mind. When I watch her work, I literally see smoke come off her laptop. I miss my friend dearly. She lives a seven hour drive away from me, yet she helped me start Autism Diva Help through that distance. She encouraged me every time I felt like giving up, and kept telling me to just keep going, going, going... She is my Nemo, and I am... what's my name again?
Anyways, without Dani, there would be no Autism Diva Help. I would have quit a long time ago, or never had started it in the first place, so for that, I must thank my good friend Dani, as well as you guys... Autism Diva Help has had over 22, 800 hits in one single year. Holly cow!
As for my goals... I will let you look back at one of my earlier posts and let you score my goal list... Here it is:
http://autismdivahelp.blogspot.com/2011/03/if-you-bungle-raising-your-children-i.html
Goal 1: Finding a better school, one that can handle Dayton's disability... I haven't switched to another school, but the school that Dayton has been attending got a new principal and Dayton has a new teacher and aid... what a difference! We're having a much more successful year thanks to their efforts, without one single suspension!!! I would have to say that I have met this goal, what do you say?
Goal 2: Finding daycare... Yeah, that's a literal impossibility in this area of Winnipeg. Instead of finding a daycare, I'm using my respite hours to work... Now the challenge is finding a good respite worker that is available for me to be able to work like regular people out there instead of the split shifts that I have been working... I would say I've met this goal 50% - at least I'm using my respite, something I haven't really used before. Will I find a daycare for Dayton before he turns 12? Hmmmm, probably not likely. I'm going to have to re-evaluate this goal and fine tune it to finding a respite worker who is able to watch Dayton after school. Sounds good to me, what do you think?
Goal 3: Finding a play group for Dayton... I've created PACE with the help of SuperDad, and we've had two successful play dates so far: one at a McDonald's and the second one at our new home that we got a week and a half ago. We're doing our third gymboree tomorrow night! I say mission accomplished with this goal!
Goal 4: Checking out the YMCA for programs for the two of us. A family membership is $75.00 a month... Ouch. Met the goal as I DID check it out, but not joined as it's too expensive. Goal met.
Goal 5: Not bringing work home to take time away from Dayton. MISSION ACCOMPLISHED!!! I've found a better job, one that requires me to leave home, but once I do get home, I don't bring work with me. I'm all Dayton's!!! And the best part, I LOVE MY NEW JOB. I actually get to interact with my colleagues, my employer is fantastic, and I get to do what I've been teaching for the last three years. I'M NEVER LEAVING PHARMACY AGAIN!!!
The road has been bumpy, with lots of twists and turns. Thank goodness I wore my seat belt for this drive, as it's been full of missions!
I just have to remember the pictures of success:
See, I kept thinking that it was so easy for Dani to tell me to "just do it," as she is an amazing writer, and she's not only a blogger, but a published writer. She can do things on a computer that would "google" your mind. When I watch her work, I literally see smoke come off her laptop. I miss my friend dearly. She lives a seven hour drive away from me, yet she helped me start Autism Diva Help through that distance. She encouraged me every time I felt like giving up, and kept telling me to just keep going, going, going... She is my Nemo, and I am... what's my name again?
Anyways, without Dani, there would be no Autism Diva Help. I would have quit a long time ago, or never had started it in the first place, so for that, I must thank my good friend Dani, as well as you guys... Autism Diva Help has had over 22, 800 hits in one single year. Holly cow!
As for my goals... I will let you look back at one of my earlier posts and let you score my goal list... Here it is:
http://autismdivahelp.blogspot.com/2011/03/if-you-bungle-raising-your-children-i.html
Goal 1: Finding a better school, one that can handle Dayton's disability... I haven't switched to another school, but the school that Dayton has been attending got a new principal and Dayton has a new teacher and aid... what a difference! We're having a much more successful year thanks to their efforts, without one single suspension!!! I would have to say that I have met this goal, what do you say?
Goal 2: Finding daycare... Yeah, that's a literal impossibility in this area of Winnipeg. Instead of finding a daycare, I'm using my respite hours to work... Now the challenge is finding a good respite worker that is available for me to be able to work like regular people out there instead of the split shifts that I have been working... I would say I've met this goal 50% - at least I'm using my respite, something I haven't really used before. Will I find a daycare for Dayton before he turns 12? Hmmmm, probably not likely. I'm going to have to re-evaluate this goal and fine tune it to finding a respite worker who is able to watch Dayton after school. Sounds good to me, what do you think?
Goal 3: Finding a play group for Dayton... I've created PACE with the help of SuperDad, and we've had two successful play dates so far: one at a McDonald's and the second one at our new home that we got a week and a half ago. We're doing our third gymboree tomorrow night! I say mission accomplished with this goal!
Goal 4: Checking out the YMCA for programs for the two of us. A family membership is $75.00 a month... Ouch. Met the goal as I DID check it out, but not joined as it's too expensive. Goal met.
Goal 5: Not bringing work home to take time away from Dayton. MISSION ACCOMPLISHED!!! I've found a better job, one that requires me to leave home, but once I do get home, I don't bring work with me. I'm all Dayton's!!! And the best part, I LOVE MY NEW JOB. I actually get to interact with my colleagues, my employer is fantastic, and I get to do what I've been teaching for the last three years. I'M NEVER LEAVING PHARMACY AGAIN!!!
The road has been bumpy, with lots of twists and turns. Thank goodness I wore my seat belt for this drive, as it's been full of missions!
I just have to remember the pictures of success:
Consider yourselves hugged,
Lou
Wednesday, 21 December 2011
Autism De'Light
Certain things worry me about Dayton, visible things...
The older he gets, the more I believe in his diagnosis; it's as though he's grown into it.
The way he fidgets because his underwear "pinches, but they're not too small or too big mamma." The way he slouches his shoulders no matter how much I'm after him to sit up straight and "pull your shoulders back!" The way his body is always itchy and he feels compelled to scratch like crazy at times, especially when cuddling with me on the sofa. The way he doesn't process temperature (in the summer at 35 C's he's wearing a long sleeved shirt hoodie and jeans, in the winter at -35 C's he's wearing his winter coat unzipped). The way he chews the skin off the end of his fingers (and it doesn't hurt him to do this), the way he stares off into space as though pausing a movie then pressing play as he continues from where he left off... the way he writes, talks, acts around others...
If you sat down with my babe for half an hour, you'd say I was nuts. "There's nothing wrong with him," is something I hear often... But spend a week with him, and you'd notice these little things too. And these little things all add up, don't they?
I woke up to the radio last week to hear a Charles Adler show in session about autism and how the 'high end of the spectrum' is being over diagnosed all the time.
Let's put this into perspective most of us can understand...
How many of us have struggled or been concerned about adding an extra few pounds? How many of us have been ten or twenty or thirty or forty or fifty lbs over weight or more? News flash: The pain of being a little over weight is painful, just as being very over weight is. Pain is pain. As a parent, am I grateful that Dayton fits on the higher end of the autism spectrum? Absolutely, but in some ways, I can't help but think if he fit on the lower end of the spectrum, people would make accommodations for him that they don't now, nor will they in the future. Dayton is and will be viewed as a little 'odd.' And that hurts. A lot.
I've heard the term 'autism light' many times; you'd think I'd be immune to it, but it still makes me cringe when someone refers to PDD-NOS as autism light. It's far from light. It hasn't been light on Dayton. It's been hard, very hard.
I am very fortunate to finally have a teacher that understands my babe and cares about him and his education. We have faced others who really couldn't have cared less. Even worse, I swear they even looked for an excuse to get him suspended so they wouldn't have to deal with him. Knowing that a teacher does not care for your child is difficult, and I am so blessed to not have to deal with that this year. I've been praying for four years to have a teacher like the one Dayton has now. Four long years... I thank the Lord for her every morning, EVERY MORNING.
Had Dayton been diagnosed with classic autism, I bet the previous four teachers would have made allowances for his behaviour and cognitive delays, but alas they did not. Instead of wording their questions in a way where Dayton didn't take them 'literally,' they engaged in full out war with him and had a power struggle with a cognitively delayed child, constantly forgetting that even though Dayton may chronologically be seven, eight or nine years old, he was actually mentally comprehending of that of a five, six or seven year old little boy. This resulted in extreme physical altercations between my child and the school staff, where one time it took four teachers to hold my then fifty pound child to the floor.
So for those parents who think my child has 'autism light,' I ask that you take a moment, bite your tongue and acknowledge the fact that my pain is just as real as yours. My struggles are just as real as yours and my concerns, worries and panic attacks in the middle of the night are also just as real as yours. My tears are wet too, just like yours.
As dad Paul always reminds me at the end of a phone call, consider yourselves hugged,
Lou
The older he gets, the more I believe in his diagnosis; it's as though he's grown into it.
The way he fidgets because his underwear "pinches, but they're not too small or too big mamma." The way he slouches his shoulders no matter how much I'm after him to sit up straight and "pull your shoulders back!" The way his body is always itchy and he feels compelled to scratch like crazy at times, especially when cuddling with me on the sofa. The way he doesn't process temperature (in the summer at 35 C's he's wearing a long sleeved shirt hoodie and jeans, in the winter at -35 C's he's wearing his winter coat unzipped). The way he chews the skin off the end of his fingers (and it doesn't hurt him to do this), the way he stares off into space as though pausing a movie then pressing play as he continues from where he left off... the way he writes, talks, acts around others...
If you sat down with my babe for half an hour, you'd say I was nuts. "There's nothing wrong with him," is something I hear often... But spend a week with him, and you'd notice these little things too. And these little things all add up, don't they?
I woke up to the radio last week to hear a Charles Adler show in session about autism and how the 'high end of the spectrum' is being over diagnosed all the time.
Let's put this into perspective most of us can understand...
How many of us have struggled or been concerned about adding an extra few pounds? How many of us have been ten or twenty or thirty or forty or fifty lbs over weight or more? News flash: The pain of being a little over weight is painful, just as being very over weight is. Pain is pain. As a parent, am I grateful that Dayton fits on the higher end of the autism spectrum? Absolutely, but in some ways, I can't help but think if he fit on the lower end of the spectrum, people would make accommodations for him that they don't now, nor will they in the future. Dayton is and will be viewed as a little 'odd.' And that hurts. A lot.
I've heard the term 'autism light' many times; you'd think I'd be immune to it, but it still makes me cringe when someone refers to PDD-NOS as autism light. It's far from light. It hasn't been light on Dayton. It's been hard, very hard.
I am very fortunate to finally have a teacher that understands my babe and cares about him and his education. We have faced others who really couldn't have cared less. Even worse, I swear they even looked for an excuse to get him suspended so they wouldn't have to deal with him. Knowing that a teacher does not care for your child is difficult, and I am so blessed to not have to deal with that this year. I've been praying for four years to have a teacher like the one Dayton has now. Four long years... I thank the Lord for her every morning, EVERY MORNING.
Had Dayton been diagnosed with classic autism, I bet the previous four teachers would have made allowances for his behaviour and cognitive delays, but alas they did not. Instead of wording their questions in a way where Dayton didn't take them 'literally,' they engaged in full out war with him and had a power struggle with a cognitively delayed child, constantly forgetting that even though Dayton may chronologically be seven, eight or nine years old, he was actually mentally comprehending of that of a five, six or seven year old little boy. This resulted in extreme physical altercations between my child and the school staff, where one time it took four teachers to hold my then fifty pound child to the floor.
So for those parents who think my child has 'autism light,' I ask that you take a moment, bite your tongue and acknowledge the fact that my pain is just as real as yours. My struggles are just as real as yours and my concerns, worries and panic attacks in the middle of the night are also just as real as yours. My tears are wet too, just like yours.
As dad Paul always reminds me at the end of a phone call, consider yourselves hugged,
Lou
Monday, 21 November 2011
Has Special Needs Inclusion Gone Too Far?
To integrate or not to integrate... A question rarely posed to a parent of a child with special needs. I certainly don't have an option, thanks to our fantastic government. You would think that as a parent with a child on the autism spectrum, I should have a choice at least in the matter, but no. No body gives a crap about what a parent NEEDS for their child.
I'm not sitting here talking about what I WANT for my son. I'm talking about what I NEED for my baby, actually, what Dayton NEEDS for himself, not what I need or want.
I am very fortunate that Dayton has a teacher this year that 'gets' him. But it wasn't always so... And all it takes is one bad teacher for the house of cards to fall... I've had two years of literal hell, feeling as though I was going to lose my mind, powerless to help my son in school, powerless to help the teacher or his educational assistant. Feelings of absolute rage when the school principal decided to call the police on my then seven year old, fifty pound boy, the guidance counsellor calling CFS twice, and the shame and ridicule that I felt came along with those decisions. I know I'm not alone in this. I've met with other parents of children on the autism spectrum who have been mortified and gone through the very same issues as myself.
Is it really fair of the government to expect the school to know how to integrate our kids with special needs? I'm not just talking autism here, but any disability. I don't mean to sound rude or disrespectful, but I think there is a different expectation in regards to integrating a child not able to walk compared to a child with a cognitive disability.
Is it fair to expect all teachers be able to teach braille to a blind child? What about sign language to a child that can not speak? Do all teachers posses these skills?
How about cerebral palsy, spina bifida, epilepsy, down syndrome, mental retardation, ADD, ADHD, speech and language impairments, traumatic brain injury, pervasive developmental disorder, autistic disorder, learning disabilities, etc... Are teachers supposed to know about every single disorder? Are educational assistants? Are principals, guidance counsellors or resource teachers? Who exactly in our schools is supposed to know every single childhood disability in order to teach the rest of the school when it comes time to integrate a student with an individual disability?
Trust me, segregation is far from what I WANT for my child, but I do want the best education I can get my hands on for him, which begins with a knowledgeable teacher. This is not meant to insult any of the teachers out there, please understand this. I mean no disrespect. Society NEEDS my child to become a contributing member of society, not a burden. I have very high hopes that my son will be contributing to his generation. But there are others out there who may not be so fortunate to have a positive outlook on their child's future.
Does a fifteen year old girl with the cognitive skills of first grader truly belong in a grade ten classroom? Is it really fair to this girl to have to sit through seven hours of social studies, math, English, and metal work when she can not read or write? Who's interest are we really focusing on here, the student's human rights or her parents' warm fuzzy feelings of having their daughter in class with her peers? Does society really think this girl is happy with her social promotion? And how about the teacher? Do we really expect her or him not to lose their "cool?" In a class of thirty students, chances are this teacher is already making twenty different class lesson plans... As a former instructor myself, just having to create and re-create the one lesson plan was like getting a freaking root canal. I can't imagine having to do twenty...
My son Dayton is in grade four. He is finally beginning to learn how to read and write. I wanted him to repeat grade three last year, but the principal refused, probably because she really had no choice, did she? As much as parents get upset with their school teachers, principals and school divisions, at the core of this problem lies the government. They make the law, and they're the ones that are not giving the teacher, principal, school division or the parent for that matter, the choice to do what is best for our children. In the mean time, the government hides behind the schools. As a parent, I don't get to talk to our premier Greg Selinger, do I? Noooooo... I get to throw my temper tantrums at the school staff and school division, right? They're the only ones I get to speak to. Trust me, I know first hand.
It all boils down to social promotion... It does not seem to matter to our government that our kids are not learning. All that matters is that no child is left behind. You know, that warm, fuzzy, lovin' feeling. All the funding in the world is not going to help our kids if the government doesn't put some help in place for our educators to have at their finger tips, does it? It's like going out and buying a low fat cookbook, but unless I use it, I won't be losing weight, will I? That reminds me... Gotta go through the cookbook and make out some menu plans and go grocery shopping... When is government going to wake up and smell the coffee here? I'm all for inclusion, but lets be realistic here with what we're dealing with people, shall we?
Social promotion. Education. Society NEEDS education. The days of do your work, learn in class, do your homework and pass your tests are gone. In place we have social promotion, to spare our children's feelings? I'll tell you what will raise our kid's self esteem... EDUCATION. My son is proud of himself for passing his spelling test today. He got six out of six words right. Yeah, that's right. My baby rocked his spelling test. But last year... last year my boy had low self esteem, fits of rage where he questioned me why bother going to school, he was too stupid anyway (his words, not mine). Last year's teacher wasn't the calibre of teacher Dayton has today. Perhaps I'm a little too harsh, I wasn't really there to observe. But I can tell you that this year, Dayton understands his teacher. Last year he didn't. Could last year's teacher been overwhelmed with too many lesson plans to keep up with, and this year's teacher doesn't have nearly as many lesson plans to create? Is this year's teacher's assistant more on the ball, more experienced with autism? Or has Dayton somehow found that magical button of compliance? There are so many things that could be different, or a combination of things that just fit into that mysterious, multi-coloured puzzle.
Our kids may have challenges, they may have a disability, but they're far from stupid. They know when they're truly included in their education and when they're being patronized or simply tolerated. So perhaps it's a combination of blame, the government and the teacher. I think mostly the government though. I like to blame it all on 'the man.'
Consider yourselves hugged,
Lou
I'm not sitting here talking about what I WANT for my son. I'm talking about what I NEED for my baby, actually, what Dayton NEEDS for himself, not what I need or want.
I am very fortunate that Dayton has a teacher this year that 'gets' him. But it wasn't always so... And all it takes is one bad teacher for the house of cards to fall... I've had two years of literal hell, feeling as though I was going to lose my mind, powerless to help my son in school, powerless to help the teacher or his educational assistant. Feelings of absolute rage when the school principal decided to call the police on my then seven year old, fifty pound boy, the guidance counsellor calling CFS twice, and the shame and ridicule that I felt came along with those decisions. I know I'm not alone in this. I've met with other parents of children on the autism spectrum who have been mortified and gone through the very same issues as myself.
Is it really fair of the government to expect the school to know how to integrate our kids with special needs? I'm not just talking autism here, but any disability. I don't mean to sound rude or disrespectful, but I think there is a different expectation in regards to integrating a child not able to walk compared to a child with a cognitive disability.
Is it fair to expect all teachers be able to teach braille to a blind child? What about sign language to a child that can not speak? Do all teachers posses these skills?
How about cerebral palsy, spina bifida, epilepsy, down syndrome, mental retardation, ADD, ADHD, speech and language impairments, traumatic brain injury, pervasive developmental disorder, autistic disorder, learning disabilities, etc... Are teachers supposed to know about every single disorder? Are educational assistants? Are principals, guidance counsellors or resource teachers? Who exactly in our schools is supposed to know every single childhood disability in order to teach the rest of the school when it comes time to integrate a student with an individual disability?
Trust me, segregation is far from what I WANT for my child, but I do want the best education I can get my hands on for him, which begins with a knowledgeable teacher. This is not meant to insult any of the teachers out there, please understand this. I mean no disrespect. Society NEEDS my child to become a contributing member of society, not a burden. I have very high hopes that my son will be contributing to his generation. But there are others out there who may not be so fortunate to have a positive outlook on their child's future.
Does a fifteen year old girl with the cognitive skills of first grader truly belong in a grade ten classroom? Is it really fair to this girl to have to sit through seven hours of social studies, math, English, and metal work when she can not read or write? Who's interest are we really focusing on here, the student's human rights or her parents' warm fuzzy feelings of having their daughter in class with her peers? Does society really think this girl is happy with her social promotion? And how about the teacher? Do we really expect her or him not to lose their "cool?" In a class of thirty students, chances are this teacher is already making twenty different class lesson plans... As a former instructor myself, just having to create and re-create the one lesson plan was like getting a freaking root canal. I can't imagine having to do twenty...
My son Dayton is in grade four. He is finally beginning to learn how to read and write. I wanted him to repeat grade three last year, but the principal refused, probably because she really had no choice, did she? As much as parents get upset with their school teachers, principals and school divisions, at the core of this problem lies the government. They make the law, and they're the ones that are not giving the teacher, principal, school division or the parent for that matter, the choice to do what is best for our children. In the mean time, the government hides behind the schools. As a parent, I don't get to talk to our premier Greg Selinger, do I? Noooooo... I get to throw my temper tantrums at the school staff and school division, right? They're the only ones I get to speak to. Trust me, I know first hand.
 |
| Me, freaking out on speaker phone with the Premier's office for transferring me yet again to Manitoba Education who is absolutely useless... Take charge Mr. Premier! Answer your phone! |
Social promotion. Education. Society NEEDS education. The days of do your work, learn in class, do your homework and pass your tests are gone. In place we have social promotion, to spare our children's feelings? I'll tell you what will raise our kid's self esteem... EDUCATION. My son is proud of himself for passing his spelling test today. He got six out of six words right. Yeah, that's right. My baby rocked his spelling test. But last year... last year my boy had low self esteem, fits of rage where he questioned me why bother going to school, he was too stupid anyway (his words, not mine). Last year's teacher wasn't the calibre of teacher Dayton has today. Perhaps I'm a little too harsh, I wasn't really there to observe. But I can tell you that this year, Dayton understands his teacher. Last year he didn't. Could last year's teacher been overwhelmed with too many lesson plans to keep up with, and this year's teacher doesn't have nearly as many lesson plans to create? Is this year's teacher's assistant more on the ball, more experienced with autism? Or has Dayton somehow found that magical button of compliance? There are so many things that could be different, or a combination of things that just fit into that mysterious, multi-coloured puzzle.
Our kids may have challenges, they may have a disability, but they're far from stupid. They know when they're truly included in their education and when they're being patronized or simply tolerated. So perhaps it's a combination of blame, the government and the teacher. I think mostly the government though. I like to blame it all on 'the man.'
Consider yourselves hugged,
Lou
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
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