Tuesday, June 24, 2014

The story of a good day.



You are woken abruptly to a wide awake child whispering, "Can I play on your phone?  Oh wait, never mind."  As they scamper off stomping down the hallway they begin singing at the top of their lungs.  It is 6:30 a.m.  The sun is up, as is your child.  Bed and pillow feel as though they are pulling you back into their depths.  Bleary eyed and exhausted out of bed you must rise.

"Quiet child you will wake the rest.", said mid yawn.  Hurriedly you gather a spoon, a yogurt and the orange bottle of pills.  "Time for meds child.  Open up." you say exhaustedly.  The child scampers over, dancing and waggling their tongue.  Okay, meds are in.  Now to wait for them to hit.



The child jumps off the couch, riling the dog and bouncing all through the house.  All the while yelling and singing as loud as is possible.  Suddenly they hit.  The child is almost instantly calm and states, "Must hurry don't want to be late today."  They calmly walk to their bedroom and begin the task of preparing for the day.  



The second child awakes, but you are prepared.  Lunches are made, backpacks are filled and their breakfast is awaiting on the table.  You get the child their outfit for the day and once they are finished breakfast, it is into the bathroom for a quick change.  Let's Go!  The second alarm goes off. Time to move it!  Out the door they fly, backpacks on and ready to move.  And they are off.



You sigh with relief and enjoy the quiet; calm for a moment.  Onward with your day you go.  



...



Alarm goes off, school will be out soon.  Off you go, don't want to be late or you will miss the perfect parking spot.  You arrive with plenty of time, say your hello's and how are you today's.  The bell goes off.  Students begin pouring out of their classrooms.  Oomph, child two body slams/hugs into you and say's, "Hi MOM! Here hold this!", as they shove their backpack into your hands.  As they run for outside.



Off you go.  You meet child one outside, "Hurry Mom, we don't want to be late getting home."  Child one climbs into the vehicle with ease and seats themselves.  Child two is running up & down the lawn, playing with other children.  "Come on child we have to get going."  Child laughing continues on their way.  You wait patiently.  Child two screams from the vehicle, "We need to leave NOW!"  You walk over to Child two and calmly ask them to come with you.  "No I am still playing", child two runs in the opposite direction.



This game of cat and mouse continues for what seems like hours.  When finally you catch the child and holding their hand inform them, "It is really time to leave, we are late."  Child two resists. You really are running late and must go.  You pick child two up and haul them over to the vehicle.  Out it comes, "I hate you, your not my Mom, I just want to stay, I am choking, you're killing me..."  Words you have heard time and time again from a child who does not mean them. 



You get child two into the vehicle and buckled up.  Child two begins berating and hitting child one.  Child one defends themselves.  A quarrel ensues. You pull into the driveway and scarcely get the door open.  Both children begin to whine, "They were hitting me! I didn't start it."  Deep breath.  

You unlock the door and they push past you.  "I am hungry, I am starving, make me a snack!", they declare.  "First put away your backpacks and shoes.  I will get you a snack.", exhausted from the ordeal after school.  


As they rush into the kitchen they chatter, "Where is it!?  Where is my snack?!"  Calmly you continue to prepare the snack, while they argue over their favourite game.  They eat and are off to see who is home to play.


Five minutes later in they run.  "No one is home!  I am bored!  What can I do?"  You list off the usual list.  "I don't want to do that!  I want to play with a friend NOW!"  You list off the friends who live close by, "No one is home today sweetheart."  Grumpily child two disappears to their bedroom.  Child one sits down to think.



Child one asks child two to play a game.  "No I don't want to play with you!", yells child two and slams the bedroom door shut.  Child one attacks the door, "But I really want to play!"  Child one is getting angry.  "Please just find something else to do and let your sibling have some space.", you calmly ask child one.  Child one, "Fine!"  And goes into their bedroom and slams the door.  Breath.  Find your Zen.  Find your calm.  



Child two knocks on child one's bedroom door, "I want to play now."  Child two, "Okay."  And into the bedroom they go.  Half an hour passes by.  You hear a quarrel brewing from the bedroom.  "I want to do it this way!" child two screams.  "No that is not the way it is done." child one declares.  Suddenly you hear the all too familiar sound of skin meeting skin.  Out runs child two, "They hit me for no reason."  Child one, "YOU started it, you didn't listen, you did this, not me."  Child two attacks.  You pull them apart into their own spaces, "Calm down, let's talk this out."  Crisis averted. For now.

...


Five o'clock.  Breath.  Meds will be wearing off soon.  Like clock work, the inevitable crash will happen complete with swearing, potty talk and nastiness oozing from child one. Today child one occupied themselves with Lego's before the crash hit and continued playing when the meds wore off.  Breath.  The crash will be over soon.  



...



You put dinner on the table.  In rushes child two, "I am sitting here!"  You finish getting everything on the table.  Child one saunters in, "HEY, that is MY spot."  As they lunge toward child two and attempt to punch them. You step in the way to block the attack.  "Calm down and go take a break please."  "NO, I don't need one!  I just need my spot back!", shouts child one.  You finally help child one calm down and everyone sits down to eat.



After dinner everyone scatters. Children escape to the outdoors.  Bedtime rolls around.  You call for child one and child two to come inside.  "Let's hide", whispers child two.  And off they go.  Breath.  You go back inside and do what you have been taught to do.  Ignore.  Don't give them an audience, yet keep a watchful eye. They will come inside eventually.



...



Two hours later.  Child two rushes in, "I am cold!", they declare.  Child one sneaks inside.  "I am hungry!" they shout.  You explain that dinner already happened and if they would like a bedtime snack they need to get their pajama's on and wait for the snack.  



You prepare a snack.  "MOM, child one is throwing pants at my head!" shouts child two.  Breath.  "Child one please get dressed IN your bedroom.", you call down the hall.  Finally after an hour of "Bedtime stories, Ooops I forgot to pee/brush my teeth, just have to say goodnight to the dog, must put away something I forgot about...", they are in bed.  



Breath.  You are exhausted and reviewing the day determine that it could have been much worse.  There were minimal meltdowns, few tears, everyone is fed, you didn't need to call the children's support worker, no serious all out brawls occurred between your children...  Despite being drained emotionally and physically from the day, it was an okay day.  



You mull over things in your head.  You never in your wildest dreams ever planned to have a family like this.  It never once crossed your mind that you would one day need to make the controversial choice to medicate your child.  Even during the seemingly endless months of trying everything "natural"; sticking to the strictest of routines complete with charts & pictures; speech therapy, reading groups, phonetic language help and more.  But in the end you made the choice to get your child back and give them the help they so desperately need to not simply survive, but to thrive.  

You never knew just how much you would need to learn about how to best raise your extra special children and the complicated meanings behind FOD, ASD, CAPD, SPD, ADHD, ODD, OCD, OT, PT and so many more acronyms.  Or how many hours would be spent searching for support, networking to find the best avenue for which to find it. 


You never imagined sinking to the bottom every day, only to force yourself to rise to the top again the very next morning.  

You didn't ask for this.  And yet here you are.  This is your life.  Your reality.  No one else may take your place.  This is your fight.  

You face challenges every single day that other's may shrink at the thought of surviving.  And yet you persevere.  You survive.




Tuesday, February 25, 2014

Here and there


I began this journey apprehensive to say the least.  I would say If someone had told me, but someone did.  When my son was 3 and being  himself, a holy terror aka Busy, I was informed by a well-meaning person that he must have ADHD.  I brushed it off and said no he is just active and made up more reasons in my mind.  When he was 4 a family member, whose son has severe ADHD, told me my son just needed more discipline. 


Once school started it was a whole new ballgame.

It was in Grade 1 that I really started to notice the behaviours I was seeing at home were trickling in to the class room.  Unfortunately the teacher my son had looked at him and told me he was a "bad kid".  I knew she was wrong.  Then Grade 2, the teacher within weeks came to me and explained my son's issues in the classroom.  She didn't come out and "label" my child; she simply explained the behaviours & red flags she was seeing.  After a lengthy conversation with a friend I got a hold of the DSM questionnaire and began my research.

Google became my best friend.  I read everything I could get my eyes on.  Learning exactly what ADHD is, because the name of the disorder is actually very misleading.  I learned that it rather is an executive function impairment.  I learned how it is treated.  I found two amazing groups of parents to lean on for support, as they live this crazy life 24/7.  I learned how to find my "Zen", calm place to handle a meltdown.  I learned to help my son come down from an Anxiety attack.  I have learned just how much strength I really have.  I have learned that my Heavenly Father put my son into my care for reasons that I do not yet fully understand. 

I have learned more in the last year and a half than I ever thought possible.   And yet I know there is still more learning ahead of me.

I really love the saying that "God will give you more than you can handle".  Until I had my children I always bought into the God will only give you what you can handle.  It is a good reminder that we are not put on this earth alone, that someone out there is going through exactly the same circumstances as your or I.  


My daughter has had more trials in her young life than most adults.  She is a very tough little girl.  She had surgery back in May to repair her bladder Reflux and since then we have been able to see her other issues clearly.  We already know she has sensory processing disorder and a Fatty Oxidation disorder, the genetic disorder SCAD.  But there are more pieces to her puzzle that we are in the beginning steps of figuring out.  Aspergers/Autism has been tossed around, she has more than a few red flags for it.  

Some may say, What does it matter if you get a "label"?  It matters because it is not a label to us, it is a diagnosed illness/disorder, the same you would require if you suspected your child had Diabetes or Kidney disease.  It gives us a more clear starting point of what we are working with.

In the meantime we are figuring out this crazy life, learning to go with the flow more, learning as much as we can about how to parent our extra special children and exploring every possible avenue of support for our family.


Tuesday, December 3, 2013

Embracing it...


Why fight it, might as well embrace it.  

I may be the strongest person you know, I may be the weakest person you know, I could be your brother, sister, mother, cousin or other family member.  You may not know the behind the scenes life that goes on.  You may not know how much of a struggle it is to just keep on keeping on.  I am talking about living with a disability.  


That word is so misleading, because just because you have a disability does NOT make you less of a person, it does not make you less human.  I firmly believe it makes you more human in that you can see the humanity where others do not.

I have lived my entire life with the ability to just keep on keeping on, yes there are crash and burn days where things just seem insurmountable.  But I get up and I keep on keeping on because no one else is going to do it for me, no one else can.

This is the hand I was dealt, my life, my husband, my children are all part of that life.  We are only given that which we can handle.  Some days what we are given is hard, others it is full of joy and fun.  Our defining moments come from how we weather the storm.

Our particular storm is one I would never wish upon anyone else and would also never trade for anything in the world.  


Our 8 year old son is amazing, he is funny, smart, one giant goof, loving and cares deeply.  He has ADHD.  He also has Anxiety disorder, Central Auditory Processing Disorder, Sensory Processing Disorder and a Learning disability.  All of those things are a part of him that he was born with, but they definately do not soley define who he is and if you ask him he wouldn't wish for anything to be different.  


He does however wish for more understanding.  He wishes he didn't have to answer the questions of, Why do you get a cool purple stool? Why do you get to wear cool headphones?  Why do you get to use a laptop?  He wishes that everyone understood that different is okay, different is great, different makes you unique and we are all different.  He wishes that every person in his life knew what it means to be him with all his intricate unique qualities.  He wishes everyone knew what it means to have ADHD.

Yes he can sit still if he is interested in what is going on/what he is doing. Yes he has a very hard time listening to all the directions and then doing things. Yes he is so very well behaved when he gets to play with his friend's. Yes he will pester anyone who gets annoyed with his pestering until they crack.  Yes he is one the most responsible 8 year olds I know and has great manners.  Yes he forgets what he was doing 1 second after you told him to do it.  I could go on and on about the little things that are part of what you can see on the outside.  But I won't.  


I will ask that you take a minute to understand what an Executive Function Impairment is, you can even Google it.  If I could change ADHD to reflect what it really means I would change it to EFI.  Because it better reflects the true nature of having ADHD.  It is not about..squirrel...or about jumping off furniture and running around like the Tasmanian devil.  Those are behaviours included in there, but what is missed is that with an EFI your brain isn't communicating at a normal speed or even in the what is considered normal way.  It is moving slower, so things get lost in translation.  It is creativity, it is brilliance, it is thinking differently quite literally, it is energy, it is so much more than we may ever know, it is also debilitating, it is pain at the lack of self control, it is a struggle, it is acting on impulses without thought.  And lastly it is a huge part of our lives.


A part that as a family we are working on embracing.  It is often pure chaos, but it is our chaos.  







Monday, September 30, 2013

Winter 2013


WINTER


Awesome concert!!




Sunset


Enjoying our new trailer


Parent teacher interviews


Sledding


Cowgirl


Playing


My new nephew!


Mommy Son Date, he was not happy that I took his picture


Arrr!


Her royal highness


Sledding

Spring 2013

SPRING


This 8 year old was Baptized!



Opening a present



The cake



8 year old Selfie!


Enjoying the RAIN!



The Long drive homeward



Saying goodbye to the Prairies!



Due to some vehicle troubles we got waylaid for a few days longer so I got to have a random get together with some of my besties!



My brother's wedding and their Epic entrance



the Flower Girl



the Ring Bearer



Selfie



Enjoying camping in a church parking lot!



All finished and raring to go, she had surgery to repair Grade 2 Reflux.



On our way southward bound.




Good traveler #1




Good traveler #2




Driveway & front walkway project!



Checking out Bone!



Enjoying the comfy couch at Church



Showing off our new high heels



Fun Easter Egg Hunt



In heaven with some goats!



Waiting for her doctor at the Stollery!



IKEA!



Summer & Fall 2013

Wow it does not feel like it has been so long since I blogged.  A lot has happened over the past 7 months.

FALL


This little girl turned SEVEN!


And she started Piano Lessons!


This little man started Karate!


Some of our harvest from my greenhouse & gardens


One last camping trip for Summer 2013


Off to the first day of Grade 3!



Off to our first day of Grade 2!


Enjoying a pony ride at a local hobby farm to celebrate Farming in Alberta!



SUMMER


Checking out some Trucks & emergency vehicles at a fun day for kids!




CAMPING!!!


Learning how to use chopsticks.





We learned how to a 2 wheeler!!!


Driving for more Camping!


First Cub visit to the Firehall!


We built a fort and swing set for the kids.


Spent time enjoying a fire in our backyard.


Saw plenty of rain and rainbows this summer.


Enjoyed ice cream!


Exhausted on our way home from Camping!


Enjoying the man made outdoor pool!




We trimmed some trees and enjoyed the branches!


Took the kids to Monsters U!


Rain!!!!


What we do on a rainy day!


Enjoying the lake while camping!


Fire time!