To Medicate Or Not To Medicate; Is It A Question?

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

PACE (parents of autistic children everywhere) 2nd World Autism Awareness Walk, April 2nd 2014

What’s this?  Writing about April in October?  I know…  I’ve kind of been busy.  This post is only here thanks to Mike.  He turned to me tonight and said “baby, can I ask you to do something?”  Naturally, anything he asks I do, as he is just that amazing, so I say “yes, absolutely.  What would you like me to do?” 

“I want you to blog.”

“Say what?”

“When’s the last time you blogged?  You have people who read your blog and they’ve had nothing to read for months.”

“I think it was in the beginning of the year, I can’t remember.”

“I think you should blog.”

“When am I supposed to find the time?  Let’s see…  Tuesdays are booked with PACE kid gymboree and coffee addicts anonymous, Thursdays are respite night, Fridays we have Youth Group, Saturdays we take the kids bowling, Sunday is Church and Sunday School, then autism therapy in the evening…  That leaves Monday and Wednesday nights if I’m not working which I’d rather spend with you and the kids…”

He looks sad.  So I get out my laptop and work.

Wow, last blog post was in February.  I’m so sorry.

Now, where did we leave off?  Oh yes, the autism walk!  And I've justified posting this in October as October is Canada's autism awareness month, so here we go!

Last year we focused on awareness, as the month of April is Autism Awareness Month. To be honest, with 4 out of 6 kids diagnosed with autism in our home, my fiancée and I are very much aware of autism.  So this year, Mike decided to challenge us all at PACE to theme our walk around ACCEPTANCE AND UNDERSTANDING.  Easy for him to say, he didn’t have to come up with the speech. 

Mike in his generosity gave us 2 months to prepare.  No problem…  Yeah right…  All was well under way until 1) Anne told me a little less than a month before the walk she was going on holidays (my plan to have Anne as the PACE speaker every year just blew up in my face) and 2) I decided to make a craft with the kids at PACE Kid Gymboree night.  I had this brilliant idea of making a decoupage mason jar lanterns with the kids, and when I saw the finished product I turned to Mike and said:  “Aren’t these great?  Remember last year when we thought it was too bad we didn’t have anything to light the legislature blue with?” And just like that, with such naiveté, I signed the childrens’ sweat shop green cards.  For the next month and a half, we worked our fannies off to make one lantern for each family member who had joined PACE on Facebook.  At the beginning of February, that was 180 families.  So, we committed to making 180 “decoupage lanterns.”

Yes, they are beautiful.  The kids agreed the first two Tuesdays we sat down to make them.  By the third Tuesday, their tune changed, as did mine.  I tried to cheat; buying some blue glass paint figuring they would be faster and easier to make…  Turned out too messy and expensive.  Also, Mike really liked the “decoupage,” and I love the guy, so we went back to “decoupaging.”  I refused to let go of the painted jars though.  Every jar was important to the kids, so they are included in our 180 “autism lanterns.”

Reverend Mark and Suzie Sunshine

The sweat shop

Between working full time and co-parenting 6 children, I quickly ran out of steam.  My ever loving, doting man would not have me see failure, so he enlisted the help of our oldest daughter Ashley.  Mike and Ashley stayed up many a nights into the wee early hours of the morning “decoupaging” their hearts out.  Between the two of them they made at least half of our autism lanterns. 

While we had some of the autism posters from last year’s walk, many of them ‘disappeared.’  So, the kids and adults got busy coloring more posters.  Mike wanted 400 posters in total.  That’s 400 hand colored posters, pasted on precisely measured cardboard with decoupage glue (just writing the word decoupage makes me break out in hives), threaded and ready to wear by all the people walking the autism walk.  Again, the children loved this task the first two Tuesdays…  then I heard whispered threats of a lynch mob planning to get me…  Funny how that works, eh?  Mike makes the plans for the sweat shop, I pay the price with the children…  I do believe next year he will entertain the children while I plan. 

And then there’s the baking preparations.  Our master baker Arlene Reid baked 300 cupcakes, then made the blue frosting and decorated every single cupcake by hand.  

Arlene with my youngest daughter Athena

Arlene, Beverley, Jen, Mike and Judy

Through this whole process, I’ve learned something very interesting.  A writer can write, but that does not mean a writer can speak.  I wrote, tore up, crumpled up, cried over and re-wrote my speech numerous times.  I wept over the many trees I killed in the attempt of making the perfect speech.  If you’ve met me, you know I strive for perfection.  My original speech was over 2000 words (that’s about a 15 minute speech; never did get to finish reading it to my practice audience as they were working hard at hiding their yawns).  I was politely told to write a shorter speech.  So I wrote a 500 word speech.  Yeah, that wasn’t good enough either.   I needed more information.  When I finally got a speech of 1000 words, Mike didn’t like it.  He’s lucky he’s handsome.  So I wrote another one, and then another one and another one again.  I think I got to “take 23” when I finally threw my hands up in the air and emailed my friend and PACE’s resident sage Anne Fountain, who as I mentioned happened to be on holidays in Australia.  Lucky duck.  Anyway, “take 24” wasn’t too bad I thought, about 900 words; not too long with enough information.  Anne on the other hand added another 600 words.  That’s my friend, she’s got my back!!!

Here’s the final draft:

Autism is said to affect 1 in 88 children, and 1 in 54 boys, although I have read the latest report which states the rate is as high as 1 in 68. More children will be diagnosed with autism this year than with cancer, diabetes and AIDS combined. These numbers real and they are scary. They are the facts. And whether your child is an adult on the spectrum or newly diagnosed, each of us live with a fear for them as they grow older. My challenge for you today is to not only accept autism, but to gain a better understanding for those that you are supporting. I’m not saying to go out and get an education, I’m saying talk to us! Ask questions! And for the love of God, please, please don’t pity us. Pity turns to hate, and there’s enough of that out there already.

50 years ago, cancer was referred to as the “C word.” A devastating disease referred to as if it was a swear word. Some people still do. We have come a long way in accepting, understanding and even living with cancer. Thirty years ago, individuals were shunned worldwide due to an unknown ailment that was striking individuals to death. Children were refused into schools because of a word 'Aids' and no one wanted to take the time to understand. Then ignorantly we hung our heads in shame when we realized many of these people contracted Aids due to faulty blood transfusions and not sexual orientation. Autism has become this generations leprosy, Polio, Aids epidemic. People are afraid their children will catch our children’s disability. Society calls out our parenting skills. One of our mothers was referred to as a Refrigerator mom, meaning she was icy and uncaring of her child and if you knew her that is the furthest from the truth. What we need is your assistance, true helping hands and not unsolicited parenting advice.

If a child went into a diabetic shock/seizure, would you roll your eyes with your arms across your chest, huffing, all while blaming the parent or would you run to the aid of child and caregiver. If a child was having an asthma attack, would you question the parent why they took them outside that day or ask the parent how you can help! Then why do people question a parent giving their child with autism and ADHD, medication which helps them regulate their neurological issues, their anxieties, and their attention span in order for them to learn, to cope and to become contributing members of society? Why must they assume we’re “doping” our children because we’re bad parents? Why do they assume what our child needs is an extra dose of discipline or a good swat on the butt?

Let us play a quick game! Raise your hand if you used any of these items in the past 24 hours and keep them risen until I finish.

Electricity? House phone? Cell Phone? iPad, iPod, iPhone, iTunes or iSomething? How about music? Art? Literature? How many of you is that? Hmmm......interesting.

Now lets see how many of you have heard of these people: Albert Einstein, Bill Gates, Beethoven, Mozart, Van Gogh, Mark Twain, Emily Dickinson… all of these people were loved, appreciated and respected for the contributions they made to society and all of them have one thing in common… AUTISM! That’s right folks! Without that autism, there would be no lights, music, art, computers or our precious cell phones.

Children with autism develop and bloom to their full potential if their self-esteem, spirits and talents are not butchered by prejudice, judgement, and bullies. Acceptance and self-worth are two of the greatest gifts we can give our children..

I’m gonna let you in on a little secret most won’t readily admit… Parents of autistic children are lonely. We don’t go out to many social gatherings, as it is difficult to find care or we know we are going to corral ourselves into a corner trying to ensure our labelled children are behaving better than the rest attending the event. We slowly become isolated from society due to our caring role and lack of understanding from people in general. Sometimes it’s easier to isolate ourselves than have to deal with the comments, judgements and stares of others. As a result, we get lonely. It’s how Mike Wilwand and I met, and out of our loneliness we dreamed up something wonderful, something we couldn’t find in all of Winnipeg, so we created it ourselves… PACE.

Mike

PACE is about the kids and the caregivers who love them. It exist with the help of loving parents. PACE is about accepting each other and making friends, both for parents and children. For all of us to be true to ourselves and to be who we are and not the curtain we stand behind. Beverley Jacqueline first came on board with PACE at its infancy with her two sons and daughter. She is meticulous and organized. Arlene Reid came on board with us a year and a half ago, full of energy and ready to help create the first annual PACE World Autism Awareness Walk. The success of last year’s walk is due mainly to Arlene’s gifts of planning, organizing, decorating, baking and coloring while I sat in a corner with my blue puke bucket, barely able to color our posters within the lines Mike created for me. Arlene designed our beautiful banner. And finally, our resident Sage and last year’s guest speaker Anne Fountain came and joined our group about six months ago. Though she is unable to attend due to her adventure down under, we know her spirit surrounds us. She has spent many hours helping numerous parents of autistic children in Winnipeg with her time and 20 years of experience navigating the world of Autism. Finally, we have Jen Singh who’s joined us just a few months ago. I thank her for the autism chocolates which will add a few more love handles around my waist. These women are not just friends, they have become my sisters and their children are my nieces and nephews. I love them all and hold them close to my heart.

Sadly there are many individuals, we as a collective have come across that are not so accepting. They have been principals of schools, employees in recognized Winnipeg establishments, teachers, medical practitioners, owners of stores, well known Winnipeg athletes and even church congregations and their leaders. And then of course all those who wish to make their own financial fortune with the latest, greatest snake-oil treatment.

We are here today to thank those who have accepted us and have chosen to become more aware of what we deal with not just on a day to day basis, but also on a neurological moment by moment meltdown of our children. We are here to remind our towns, cities and provinces, we aren't going anywhere and when you want to push one of us, we are 190 strong pushing back. Autism is NOT a discipline issue, a disease, nor a definition but it is part of their DNA and it is our responsibility as a community and a society to help them become a contributing part of the next generation. Based on the growing numbers, most families will be affected and all of them are mine as well as your future. They are an investment we must all partake in to sustain our own future!

Each blue lantern you see lit tonight represents a PACE family who has reached out for support. Our message is simple: Accept us, be kind, and say hi. Be our friend.

We come in peace.  With cupcakes.  And coffee.

400 posters...

Consider yourselves hugged, 

Lou and family

It Takes A Village To Raise A Child

Temple Grandin's mom said it best:  "It takes a village to raise a child."  At first glance I had no clue what she was saying, nor did I feel it appropriate for any parent to ask anyone to help raise their own child, with or without a disability.  Yes, I became all judgy and righteous.  Having had time to reflect on this quote while going on with my daily life has shed some truth on Eustacia Cutler's motto.

My life is a busy one:  I parent six children, four of them have an autism diagnosis along with ADHD, and the fifth has been diagnosed with ADHD.  We have swimming, hockey, bowling, skating, youth group, Sunday school, PACE kid gymboree and parent support group, autism therapy called "I Can Pretend," and then of course school.  Having my children participate in these activities means they are exposed to other people, with their own unique characters.  Of course I knew this prior to enrolling me children into their activities, but didn't really give much thought on how these other people would affect my children's lives.  I just wanted my son and daughter to have fun bowling, my daughter to learn how to skate, my son loves hockey and I wanted to give him the gift of participation, my children to have a relationship with God, get an education and make some friends.

As parents, we don't really think about how adults in charge of whatever activity you enroll your child in, participate in RAISING our children.  Especially when your child is on the autism spectrum.   If you're fortunate enough to have your child invited to a birthday party (I know, how often does that happen, right? But if it did...), the parent would sit beside their child and stay for the duration of the party.  Parents of children on the autism spectrum are very involved with their children.  We are there to guide and correct as needed.  We gradually back off to see if our child will contribute in play with others and learn from adults not related to them...  and they do.  The adults teaching our children are helping us RAISE our children.

Reverend Mark contributes in raising my children every Tuesday, Friday and Sunday through his teachings. Susan at Kildonan United Church helps in raising my children on Friday nights through her Youth Group.  On Sundays, when I'm not teaching Sunday School, another Sunday School teacher contributes in raising my children.  The hockey coach helps raise Dayton through coaching him in hockey.  The swimming coach contributes in raising my children during swimming, the bowling employees help Dayton and Amber and Demetra helps our family raise Amber and Dayton through "I Can Pretend."  The parents who bring their children to PACE Kid's gymboree contribute to raising my children as I help in raising theirs.  When I talk about PACE and the kids I meet, I refer to the kids as "my kids."  Beverley's son Evan always runs up to me and asks for a kiss from "Lou."  The teacher who takes the kids skating...  she's contributing to raising our children...

For parents of children on the autism spectrum it can be tough to let go of their children and let someone else help teach their child.  I know it is that way for me, which is how I ended up becoming a Sunday School Teacher.  I worry about my children and want what is best for them.  I also don't want someone else feeling overwhelmed when my children struggle through their lessons.  I feel responsible for my children's behavior, and want to be there to help and coach my children, and while I do, I learn valuable lessons myself.

I know I'm not alone in struggling with this concept.  There's many of you out there feeling you can't go out, I've been there.  Feeling secluded in your home as you're afraid of your child's reaction to going out and doing something out of routine, and worried about other people's reactions.  I see it all over Facebook, blogs and other articles, where mothers are sad because their child wasn't invited to a birthday party, or their child has no friends, or their child isn't involved in any extra-curricular activities, etc...  I was there once.  I spent years afraid of people's reactions, and it was so much easier to stay at home where Dayton and I were safe. When I tried to venture out, even just outside my apartment into our courtyard, there were parents who thought Dayton was too aggressive, too wild.  I build a cocoon around us, where we were comfortable, lonely, but very comfy.  Dayton's grown the last two years since I broke out of our shell.  It was tough at first, but we did it, and now there's no going back.  Could it be that we just "lucked out" by finding the right place?  Perhaps, but we never would have found the right place had we stayed home instead of ventured out in search of it.  And if all else fails, create one like I did.  PACE Kid's gymboree was selfishly created by my need for Dayton to make "quality friendships."  Yes, I said selfish.  I wanted MY child to have a chance to learn, grow and make friends.  I was getting no where in my back yard.  I'm a baaaaad person.  Fortunately for us, our Kid's gymboree has grown, and not just in size.  We are actually liked.  A lot.  And I am proud of this.  And the kids...  I LOVE THEM.  Like I said, they're "my kids."

It takes a village to raise a child.  It really does.  Get out there!

For those of you struggling, email me.  Message me.  Call me.


Above all, consider yourselves hugged,

Lou

What I Saw

I am doing what's called plagiarism.  It's just too important not to share with everyone.  Hope this is an eye openner to teachers, educational assistants, guidance counselors, resource teachers, principals, parents, caregivers, etc...

This post was written by Kitt Mckenzie also known as the AutistcChick.  You can find her blog at autisticchick.blogspot.ca.  Kitt herself has autism, so I think we should all take the time to read her blog and glean some wisdom from someone who lives it, every day.

What I saw

I left the gym, I had to, because the music made me uncomfortable. I stood by the door. 

I waited. I turned toward the door to the gym, and I saw a classmate burst through the door, an aide inches behind him. The aide grabbed a strap on his vest and stopped him cold. The student struggled. Aides thronged at the little windows.

I know what they saw. 

They didn't see someone asking to be taken for a walk. They didn't see him begging to have some space. 

They saw an escape attempt. A noncompliant escape attempt. A student trying to outsmart the teachers, to get his way. 

They saw someone who didn't understand the point of P.E.

They saw a runner.

He pulled away, and the aide pushed him back  through the gym door, shouting "In we go! In we go! In we go," his hands pulling and pushing as the student dug his heels in. Everyone else "encouraged" from the sidelines. I saw too much happening.

I saw an apraxic struggle. I saw a nonverbal student being pushed through a door in a frenzy of movement, everyone shouting at the same time, bent over with hands thrusting at his back, pushing against the doorframe and struggling to stay upright. I saw too much, too much.

I saw a blur of movement and sounds coming at me from every direction, I saw the ceiling the doorframe the floor somebody's hands everyone shouting. I saw the final thrust through the door, met with bright lights and cheering, everyone applauding the nice save! 

I saw dizzy and disoriented. 

I saw what he saw.

I saw a classmate who couldn't respond to prompts because they were coming too fast, and who couldn't comply because everything was being thrown at him at once.

He slumped against the gym wall and slammed his head back. The act was met with a sharp reprimand from a bystanding aide. And I know what they saw.

They saw defiance. Headbanging behavior. A tantrum.

I saw a student trying to block out external input. I saw. Everyone else gawked and chattered as the other kids did the warm-ups. I stood by helplessly.

I saw a humiliated man sitting against a wall in a corner, helpless and outnumbered, with no way to communicate.

 I saw what he saw, the flash of students flying all around me and I saw people surrounding me, cheering, cheering for the aide as though it was some big victory to drag a student back into a classroom. I saw the world whirling around my head and it hitting the wall just to drown out the noise. 

I saw that nobody was asking themselves how he might feel. I didn't just see the defeat, though, the lack of dignity or respect; I saw humiliation. Oh, yes, I saw. Pain.

I watched in horror. I felt for him. I felt with him. An aide, concerned that I had left, asked me if I was ok. Then she smiled at me knowingly. Chuckled, "He's having a little fit."

No. That's not what I saw.

I saw an overwhelmed student trying to escape a hostile environment. An attempt to find a safe place, or a bathroom, or some water. 

I saw a hasty and disjointed "rescue" that fried his emotions and ability to think. I saw visual, auditory, vestibular and tactile input slam him like a truck. I saw vestibular upheaval, and I saw desperation and fear and frustration because nobody understood, not one of them. 

They saw a fit. 

They didn't see what I saw.

*****

I know, I mouthed across the aisle. It's ok. I know. He smiled back at me.

I know. 

The bus engine rumbled, and we began to pull out of the lot. They were still talking about him, imputing motives based on their own experience. I knew that he could hear them. That they didn't really care. That it wasn't my place to correct them. To try and educate them. Not the student's place.

 I saw the look on his face, and I knew that nobody understood. 

He sat alone, leaning against the vinyl of his seat, his expression fraught with distress, his eyebrows knit. I knew that they were fine, and they could sit there and casually theorize about it, but that he was still coming down. I saw the look in his eyes. I didn't know what to say. 

I saw his hand, resting on the seat. Hesitating, I leaned into the aisle and placed mine next to it. I didn't know how else to say I support you.

His thumb wrapped itself around two of my fingers, and for a moment it was like that. Then he lifted his hand and took mine in it.

I squeezed. I know.

We stayed that way for about a minute. The bus rumbled down the street, curving around the corners, my hand in his. 

They said I helped calm him down. Sometimes people underestimate what it means to acknowledge someone's humanity. To see it. I don't know what they thought my gesture was, but we knew what it was. A show of solidarity. A quiet one, not a trumpeting fanfare, but a whisper. I know.

This is what I saw. Very different from what the teachers saw.

I don’t know exactly what he saw. I believe that it was terrifying.

But I hope . . . I hope . . . that after the terror . . . I hope that he saw a friend.

Mark This Important Day On Your Calendars!!!

Please join us on April 2, 2014 (during spring break) for our 2nd Annual World Autism Awareness Walk and Rally.

This years walk will begin and end at the Manitoba Legislative Building. The walk will begin at 6pm.

This years is going to be bigger and better with our focus being Autism Acceptance and Understanding. We will again have brilliant speakers, entertainment, coffee and goodies. Autism Jewellery and PACE T-shirts will also be available for purchase to help cover some of the costs of this event.

So bring your family, friends, neighbours, respite workers and join us in marking this day for Autism. (Please only service dogs as there are numerous children who are afraid of dogs.)
Oh yeah, and please pray for warmer weather.

As always, consider yourselves hugged,

Lou

Sunday Mornings

Just a little peek at our Brady Bunch Sundays:

Every single Sunday is the same:  the toddlers are fussing and cranky, Katie refuses to wash her hair and decides instead to experiments with make up, which of course makes me get a wee bit dramatic:  "Girl, there's a fine line between wearing make up and looking like you got attacked by a pack of Crayolas!"  Amber wants to wear gym shorts (they're short, I hate them, and it's cold outside; we're in the middle of winter), and Dayton wants to dress to the nines - dress shirt and tie (completely ignoring that there's a stain on his tie, and the dress shirt).

The five year olds decide they want to sit at the stairs of the altar, be the center of attention...  as I pretended I don't notice they run up the isle to the minister.  Naturally, Dayton wants to correct their behaviour as they've broken the cardinal rule:  "though shall be on your best behaviour in church..."

"They're not supposed to be there.  I'm gonna go get them!"  I know exactly what Dayton's idea of getting them will be:  Dragging them from the altar back to us (and we just HAVE to sit at the back of the church, because that's the routine and we can't break the routine), with the little ones screaming and kicking as they're not getting their way, typical behaviour for any toddler that doesn't get what they want.  I do my best to keep him rooted beside me, finally give up and take Amber, Katie and Dayton to Sunday School a wee bit early.

On one particular Sunday, we had a change I wasn't prepared for:  the Sunday School room was being used as a dining room to feed the congregation...  I went into full panic mode.  Change and autism do NOT mix.

Thankfully, the reverend came to rescue me with the five year olds, and led me to another room for our Sunday School.  Only one more child came to join us, making it a very, very small group.  Thank goodness because the three older ones were on the verge of a meltdown as we had another curve ball change thrown our way.  My babies on the other hand, took full advantage of the situation, running to sit on Reverend Mark's lap.  John and Athena LOVE reverend Mark, and don't even try to hide it.

Reverend Mark held the lesson that day, and I love it when he takes a break from sermons and comes to teach the children.  His lessons are always rich, leaving me with the feeling I've just walked away from a sermon.  Most importantly, reverend Mark is super supportive of the kids and even comes to pick them up for youth group in his own vehicle!  The congregation is very much involved with all of the children and supportive of special needs children AND adults.  The congregation of Kildonan United Church is in the process of fundraising money for a special electric chair for one of the elderly congregation members.  I've never seen anything like it before.  When one member of the church is affected, the whole gets involved as one.  It's incredibly amazing to be a part of this group of people who genuinely care about their church members.  And now, they've opened their doors to our autism community every Tuesday night!  I consider my family to be very fortunate and blessed to be able to be a part of this group of wonderful people.  Anyways...  off track again...

Reverend Mark made pretzels.  Not just any pretzels.  The best ever!  I've never had a fresh from the oven pretzel.  This was AMAZING!  He's an amazing baker, one who bakes breads from scratch...  yum! Breaking bread with the kids was not only fun, but it made them feel important, plus we got a good lesson on why we break bread.

Unfortunately, the room we were in was right above the sermon...  And reverend Mark finished his lesson before the sermon was over...

If I have God before me, Jesus beside me, the Holy Ghost within me and am surrounded by the Lord's angels, who or what shall I fear?  THE TODDLERS!  A bored toddler is a handful of trouble, but I have two of these little angels.  I broke out in a sweat!  Dayton, Katie and Amber are very much rule followers, and the rules are simple:  behave at church.  The toddlers haven't really been observant of this rule...

Of course, Reverend Mark assured me that everything was all right, children are children and the congregation would understand.

So, one may ask, why do I continue to do this every Sunday?  My answer:  The greatest thing a mother can do for her children is to give her children to God, teach them to love, respect, honor and worship God, and teach them to talk to God.  I won't be around forever, my time and Mike's will come.  When that time comes, I want my children to know they are not alone.  I am thankful my mother gave me this same gift, as she was called home eleven years ago, and I miss her so much.  I am thankful for God's unending love that holds me tight when I feel alone in my struggles.



Consider yourselves hugged, (and daddy Paul, if you're reading this, I miss you and mom very much)



Lou

Out Of The Mouths Of Babes

I have the most wonderful children.  No, I didn't give birth to all of them, but they are mine in every way that matters.  I don't have step kids (Ashley, Katie, Amber, Athena and John), I don't walk on them, and my biological son Dayton whom I did give birth to (well, had a C-section) does not have half sisters (Charlie-Anne and Summer); they're not cut in half.  We're a couple of families blended together into one.  So, introducing to you, a small sample of how my children think:

"Mom, I know Santa doesn't exist."
"Say what?!  Yes he does!"
"Mom, come on.  I know Santa doesn't exist, I heard it at school.  I'm fine with it."
"Keep your voice down, the kids will hear you!"
Whispers:  "Mom, I know Santa's not real."
"Well then where do the presents come from buddy?  You think they just magically appear?  Who else but Santa would bring them?"
"Mom come on!  I know you and dad buy them.  I kind of busted you last year."
"Oh..."
"What I really want to know is who eats the cookies?"
"Ugh...  I eat the cookies, it's me, I love cookies."
"And the milk?  Who drinks the milk?"
"Dad, you know how much he loves his milk."
"OK, that makes sense."

"You can't be a woman, you're a mom!!!"


"I don't want to go in, just leave me in the car."  (It's like -30 with the wind chill.)
"I don't think so kiddo."
"Why?"
"Well, for one, I love you.  And two, it's illegal."
Whispers to me:  "I won't tell anyone."


"And lead us not into temptation, but deliver us some e-mail."


Older kid:  "I bet you're 40!"
Younger kid:  "No, he's 80!"
Older kid:  "85!!!"
Younger kid:  "I'm guessing 100."
Older kid:  "No, he'd be dead then.  100 is when you die, he's still alive."


"If Jesus walked on water, could he do a head stand?"


Sitting in the front seat beside me driving home from a visit with a friend, getting car sick.  I'm singing along with the music trying to get his mind off it.
"Mom, you know I love you, right?"
"Aww, thanks babe!  I love you too!"
"Please stop singing."
"Why?"
"You're making me sicker."
So much for that idea...


"I need super glue and a non stick frying pan."
"Why?"
"I wanna know which ones a liar."
"Say what?!"
"Don't you wanna know which one is telling the truth?  Super glue is supposed to stick to everything, and non stick pans are supposed to not stick.  You said you hate liars.  Let's find out which one we hate."


At a restaurant...  the waitress taking our order...
"I wish to eat the unborn."
Absolute silence...
"Eggs, the boy wants to eat eggs..."


Again, at a restaurant...
"I want meat on a stick."
"Say what???"
"Meat on a stick with sticky sauce."
"On a stick?  I don't understand."  Meltdown in 10, 9, 8
"Lots of sticks side by side, meat in between..."
"Honey, I don't understand..."
7, 6, 5
"With the sticky brown sauce!!!"
People are looking now...
Drum roll please...  "RIBS!  YOU WANT RIBS!!!"
6, 7, 8...  Smile.  Thank you Lord!


"Momma, you're skinny."
I'm huge...  "Well, thanks babe."
"Yeah, you just have a lot of skin."
And just like that my happy moment is gone.


"I don't need a bath, can't you just Febreeze me?"



We've learned a couple of things along the way this year:

1)  Never say "maybe" to our children.  The word "maybe" to them means:  "I swear on my life this will most definitely, certainly and beyond a shadow of a doubt happen."

2) Arguing with teenagers is like wrestling with a pig in the mud.  Sooner or later you figure out (in my case through my child's counselor) that they're really enjoying it.

3) We appear to have several invisible kids living in our house.  They are named "It wasn't me," "I don't know," "I'm bored," and "Why me?"

4) I can always count on my daughters to walk up to me for no reason to give me a hug and say "I love you mommy" or my sons to jump on me when I least expect it, wrap their arms and legs around me like spider monkeys and kiss my face all over, telling me they love me 'like crazy.'

5) God may not have answered our prayers the way we wanted Him to, but when we've stepped back to look at the whole picture, we see He's answered them in the way it's best for us.  Kind of like we do with our children...  In other words, God equals daddy to us.

6) There is a special bond between mothers and sons which can never be destroyed.  I've questioned this bond much in the last year between Dayton and myself, and I see now that no matter what happens, or who he's with, no one can destroy what we have, and I am grateful.

7) My new favorite word is "Really?!"  It works for almost everything.  I'll give you a brief example...  I have a rule for my sons:  No play fighting, as John is so small and Dayton is stronger than he realizes.  When I catch them play fighting, I loudly say "Really?!"  They boys back off into separate corners of the room.

8) Courage isn't the lack of fear.  Courage is the willingness to move forward even if you are scared.  My sons show me this every day.  My daughters are a bit more squeamish, but they show me they have courage as well.  I'm very proud of them!

9) You know you're in trouble when your teenager comes to you and says "You know I love you, right?"  A conversation starting with that sentence means nothing but trouble, especially when said teenager has autism.

10) Raising little boys is not just a job.  It's an adventure; with sound effects.

Consider yourselves hugged,

Lou