The Real Cost of Being Ill...

John and I are breathing a little easier this month.  For the first time in nine months I received an income, from CPP Disability.  You may recall in an earlier post about the hoops I had to jump through to get it.

Though it is not what I would be making if I was actually at work I welcome it.  And I'm not too proud to accept it and my now "disabled" status.

Prior to my diagnosis, in February 2011, my position at work went from a full time with full benefits to a part time with zero benefits.  Zero benefits means no Long Term Disability insurance.  It also means when 15 weeks of Sick Benefits from Employment Insurance runs out there is no money left.  At least for my family.


Being ill or supporting someone who is ill is mentally and emotionally draining.  Doing so with no income is undescribable and extremely stressful.  Stress so intense that it often causes more health problems or further complications.

Thank god we had a freezer full of meat and four credit cards to juggle our increasing debt load.  We are very fortunate that friends pitched in where they could.  By purchasing our eggs, jam, blankets etc.  By sending us gift cards for groceries and gas.  By topping up our oil tank.  By giving us generous monetary gifts.  We will be forever humbled and grateful for those peoples kindness. I have learned that people want to help but don't often know how.  Here' s how...

I have a friend who has been fighting her own monster this past year.  With her permission I share her personal (private) blog.  Her story is different than mine but also similar in so many ways. I ask you to read it with an open heart and mind.  Please think about her and her message.  I am so proud of her and the courage it took to write so honestly.  This is Daniela 's story. 

What ever happened to the holistic approach?

Given my brain is a little broken as I write this my point may not be immediately clear.
Bare with me - I have a story to tell.

I have been trying to get a hold of my Neurosurgeon for a while.  Since I had my last  MRI and consultation in December my seizure activity has began to pick up - again.  I am experiencing frequent muscle weakness and sore joints on my right side.  My AVM is on the left and the swelling effects movement, among other things, on my right.  I had sent a bunch of emails, made a few calls, left some messages all of which were not responded to.  The hospital where I received Gamma Knife Surgery is not the hospital my Neurosurgeon actually works at full time so sometimes it is difficult to track him down.  As it turns out he was away for a few weeks. I decided not to pursue the other members of my team because they are not as familiar with my "unique case."  (I now have his personal assistant's email address so I cc everything to her at her request :)

A couple of weeks ago I visited my Family Physician and had her run a bunch of blood work.  She humored me but said, "you know it will all come back normal". I smiled.  I requested the lab send the results to her but also to my Neurology team at Toronto Western Hospital and my Cardiologist at St. Michael's Hospital. "Normal or within normal" are her go to phrases.  I no longer know anything and nothing in my life is within normal.

While at my appointment I shared with her my increase in seizure activity.  She suggested that maybe I go off an anti depressant I have been taking because it may decrease the effectiveness of my anticonvulsant.  Interesting.  I had already independently decreased my dose from 60 to 20mg before I had surgery so stopping wasn't out of the question. Done.  The doctor who originally prescribed this medication told me that with my "AVM diagnosis I have much bigger things to worry about now".  I assume she meant bigger than mental illness that haunts my family at large.  (Keep in mind we only have one brain).

Last fall I was referred to a Cardiologist because my Geneticist accidentally stumbled upon "something very wrong" with my heart while looking for more AVM's in my heart and lungs. Not vascular (AVM), not electrical (like B) but muscular.  The left ventricle was beating 50% slower than it should be. New problem unrelated to everything else. Really?  Unrelated?! I have learned that when you look for something you may actually find it or something completely unexpected.  I have had four different tests on my heart over the past six months. The Cardiologist has been wonderful but he too believes my AVM is more important than anything else at this moment.  I will finally hear the results and prognosis on April 4th. Sigh...  I have so many questions... What caused this?  How long has it been going on?  Does this explain why I don't recognize my own body?

Since I am already making the trip to Toronto to see my Cardiologist I decided to touch base with my Neurosurgeon - one more time.  I sent him a quick email to let him know I would be in Toronto on the fourth which happens to be his clinic day.  I reminded him of my previous emails, the increased seizure activity and told him I was no longer taking Prozac.  Within minutes he responded. "Prozac is known to cause seizures.  Please discontinue and come see me on the fourth."  Interesting!  It's never been a secret I was taking this medication.  Nor has it been a secret that I have regular seizures.  So why the AHA moment now?

I would like nothing more to hand over my medical files for the past 15 years to an eager medical student and say. "Here!  This is a list of symptoms and though they may seem unrelated I feel like everything is connected.  I am of one body and mind.  Please do not treat a part of me.  Treat me as a whole."

Building BLACKberry Fields

John, our three children and I have lived in the house we built on the hill for just over 8 years.  For over 10 years we have dreamed of a farm.  To build something sustainable that can be passed down through out generations to come.  We often tell people we were born in the wrong century.

We named the land BLACKberry Fields because it's a spin on our family name and the blackberries that grow wild throughout the field and along the tree line.

This spring is the start of something big.  We are turning dreams into goals and working towards achieving them. 

Last fall we hired a local contractor to expand our vegetable garden.  It is roughly 10 times larger than previous years.  We will grow enough for us, our neighbours and to participate in our local farmers market.

A lot of fresh fertilizer was spread. 

We inherited Grandpa McKelvey's tractor and started drilling holes for fence posts. 

We have purchased lots of fence and we still need more. 
Might as well do it right the first time and save headaches later.

Seeds were carefully selected, ordered, planted and are beginning to grow.

I have spent countless hours researching what animals are the best fit for our land.  By the end of April four Tamworth weaners, only six weeks old, will move to the hill.  Their job will be to help root up more land for next years crops.  No need to hire someone this year.

courtesy of google images

We are expanding our egg layers. They will have their new home moved here at the end of May.  The area will give them plenty of space to hunt for bugs but will also be fenced to better protect them from the sneaky fox. Mr. Roo and "his girls" will have a new home for their chicks.  We will also be raising our own fryers (meat birds) this year. 

The pasture still needs to be prepared for cattle to graze. In past years other farmers have used our land.  This year a couple of the cattle will be our own.

And if all goes according to plan we may even see a goat or two ;)

After Ablation...

While laying on a small couch around 2am watching B sleep I was suddenly surprised with how tall he was.  Really surprised. When did he get so big?  I knew he was growing because he just got new shoes and they were two sizes bigger than the ones purchased in October.  Plus every time he sees his Grandma Janet he measures himself against her; its like a right of passage to surpass her 5' status.  But as he lay in his hospital bed, softly snoring,  hooked to an IV pole, ECG and various other machines he was suddenly a young man and not our wee boy anymore.

Over the past five days I have marveled at his quiet confidence and extreme bravery.  No matter what information he was given he listened politely and absorbed what he was hearing.  Even when the news was a dose of harsh reality he remained calm and optimistic.  He asked questions to help himself (us)better understand what was happening and why. When ever he was asked if he would like to participate in a research study to help other children he eagerly agreed. Where did my anxious bundle of energy go?  The boy who bounced non stop through out an entire school year?

John and I couldn't be more proud of B and  we are so very relieved that this part of the journey is over.

So what now....

The accessory pathway was found on the left side of his heart and repaired.  He was monitored closely and received Heparin for about 18 hours to prevent clotting.  He is sore, tired and glad to be home.  He will continue to take Aspirin for the next three months.  The risk of the Aspirin causing a bleed in his brain AVM is very low therefore a must to prevent blood clots in his heart.  In June B will have another ECG and his Cardiologist will make further recommendations.  As it stands in this moment, his broken heart has been mended. 

John and I both want to thank you for the tremendous amount of ongoing support we have received.  We are extremely blessed to have such great friends and family behind us.

Sending much love from the hill and
Happy Spring :)

The Count Down

It's official. 
The count down has begun.
We have waited for months.
Now I wish there was a little more time.
In one week B is going to have his broken heart mended.

We are told the procedure will take four to five hours.
They will first find the accessory pathway, then repair it.
B's doctor reports great success. I have faith in him and the hospital.
However, we have the added complication of HHT. The unknown.
The likelihood of having to use a blood thinner is 50% depending on which side of the heart the problem lies.  That means the risk of a bleed in his brain is lower. 
The Neurologist gave his approval. 

I have never been more afraid in my entire life.

Fear makes you to do lots of things.
You reassess and reevaluate.  You question everything. You prioritize.
You take stalk of where you are, where you are going and who is coming for the ride.
You make choices in the best interest of you and yours.
Choices that not everyone will understand or respect.
I am making peace with that.

I am going to put my blog to bed for the week.
I am going to focus on whats truly important to me.
My family of five.  Our health and happiness.
The future.

Waiting for Spring

I like winter.  I love the crisp air and trees heavy with snow.  I enjoy activities like snow shoeing, skiing, tobogganing and even ice fishing.  I am especially fond of "snow days" when the school buses are cancelled and the kids are home.  This year I am done with winter. Enough already!  I am tired of being trapped indoors.  My yard is too icy and I am alone far too often to enjoy anything outside.

The beginning of Spring is my mental marker of time.   Come Spring I will be three seasons post Gamma and approaching my one year anniversary.  Spring is the time for new beginnings, big plans and moving forward.

B will be just past his heart ablation surgery and in recovery mode. A will be anticipating TLAC (art camp) and preparing for grade eight graduation (Oh my goodness!) D will also be graduating and moving on to the middle school.  John, who is always super busy, will become even busier with his carpentry business and here on the farm.  I will officially become a farmer.

Spring means fencing, fencing and a little more fencing - for security, privacy, gardens, chickens, cows and pigs. I have already enlisted the help of my father and brother in law as soon as the frost leaves the ground.  I will reward them with good food and endless gratitude.

This Spring I have insisted on learning how to use the variety of  time saving tools we have collected over the years. I just happen to have a wonderful teacher in house.   I am going to learn to do for myself a little more on the quest for self sufficiency.  I am differently abled but capable.

The chicken coops need to be cleaned and remodeled to accommodate our changing needs.We will have three houses this year. McKelvey House for our free range egg layers.  Mills House for the hens, roos and chicks. We are eagerly anticipating the first bunch of chicks to hatch. Hosaki House for our meat birds. Until we have a giant barn in the meadow this is how it will be.

I have been talking weaners (piglets) with anyone who will listen. Trying to find our small farm the perfect breed. I believe I have secured four Tamworths when the snow is gone.  They will forge, root and live outdoors.  I am leaving the cattle to John.

Spring means tilling, digging and planting.  Annuals, perennials, vegetables and herbs.  I can't wait to get my hands dirty. I need something to keep my mind and body active.  Friends who weed are always welcome.

Goodbye Winter.  Welcome Spring! 

Understanding My Aspergers Boy

Every year in September I produce a document that I have written about our son and present it to his teaching team.  It is my expectation that they share it with whom ever needs to know.  Every year I adapt and modify it to reflect changes and progress.  I try to incorporate elements of his IEP (Individual Education Plan) to make it teacher friendly.  I have done so for the past 5 years.  Why?  Because I am the expert on B.  Why? Because nothing a degree, textbook or a doctor can tell me will change what I see, feel and know to be true about him and his diagnoses.

I have decided after careful consideration to share some of it with you. My hope is you will understand what it's like to live with a different kind of mind.  Perhaps you will understand that nothing in our world on the hill is cookie cutter.  Perhaps you will better understand my last blog post.

B’s family, friends and school community must keep in mind that he is little boy first, he is not his diagnosis.  However, his diagnosis does explain some of his behavior and reactions to some situations.  Any techniques used with a child who has Aspergers will also benefit a typical child.

All About B...

In May 2006 B was diagnosed with;
Autism Spectrum Disorder - Aspergers
Attention Deficit Hyperactivity Disorder
Obsessive Compulsive Disorder
Oppositional Defiance Disorder

In April 2011 B was diagnosed with Wolffe Parkinson White Syndrome. WPW is a very serious heart condition in which there is an extra electrical pathway (circuit) in the heart. It can lead to episodes of rapid heart rate or tachycardia.  He is scheduled for ablation surgery in March. (Thus throwing off every routine and sense of control this little boy has.)

Aspergers is a pervasive development disorder characterized by an inability to understand how to act socially.  Identified children may not recognize verbal cues or understand social norms.  They may have difficulty expressing their own feelings and perceiving others’ feelings. Children with Asperger’s typically make efforts to make friends, but it is extremely difficult because they lack social awareness and are preoccupied with their own agenda.  They can be extremely egocentric. Most have excellent rote memory and become intensely interested in one or two subjects (sometimes to the exclusion of everything and everybody else). He is currently passionate about superheroes, monsters, zombies and video games. Like every child, each child with Aspergers is completely unique and brings his or her own twist.

With constant guidance and use of social stories B has been able to make many friends.  He is learning that it is important to know people by their name not by the color of their hair or where they sit in the classroom..  B is becoming increasingly considerate of others feelings and is aware when he is not.  He may say; “I don’t want to hurt your feelings but…” “I shouldn’t say this but…”.   Please remind him that sometimes you shouldn’t say the things you are thinking out loud. He is very loving if you are important to him.

He is a literal thinker and needs concrete rules and guidelines.  He continues to struggle with theory of mind.  He believes everyone thinks as he does and becomes frustrated when they do not or when people do not understand what he trying to say.  Please ask him for clarification and don't assume you know.

B's emotional and physical health and success academically depends heavily on routine and sameness.  The more things are the same, the more confident and less anxious he is. Any change in his routine can cause anxiety.  This includes new supply Teachers, Educational Assistants and rules.  Children with Aspergers often have repetitive routines or rituals.  It is extremely important that they follow their routine because disruption can cause shut down.

B needs to feel like he has control over his environment.  Anxiety can present with physical symptoms like stomach aches and being tired.  He may also shut down or refuse to work.  He may act out in frustration.
How he experienced an occurrence the first time is how he expects it to be always. The first days and weeks of school set precedent for the year. 

More about B…

• B is an excellent artist. He has spent years working one on one with a local artists to pursue his passion.  We use his passion to our advantage rather than discourage it. 
• B loves to draw any opportunity he gets.  It is important to remind B that everything counts so not to draw on school work.  
• He also uses drawing to self regulate.  If he is anxious or overwhelmed he will draw more.
• B is an blue belt in Karate.
• B is very funny.
• B is very self aware and will require breaks to self-regulate. Most often to draw but he may need to walk the halls.
• B scowls often and doesn't make eye contact.  That’s okay.  He also has a great smile and infectious laugh.
• He zones out. Often.  Ask him to pause what ever is going on in his brain and come back to it later.
• B understands sarcasm (that other children may not) and is sarcastic.  We remind him that sarcasm often appears to be rude even if that is not his intention.
• When B is anxious he will repeat himself.  Sometimes just mouthing the words again.  Remind him "no flash backs.
• B is very private.  He may choose to use the washroom during class time so he doesn’t have to be in the washroom with other boys.  Eleven/twelve year old boys don’t tend to respect privacy very much.

Ideas to promote success… (once again may work with EVERY child)

• Have structured environment with a consistent routine. 
• Provide him with a written schedule.  He needs visual cues to keep him on task.  Picture with word charts work best.  Even if he doesn’t appear to be using them keep them accessible.
• Be aware of the environment.  Is it over stimulating? Noisy, visually distracting, smelly, too hot/cold. 
• Be aware of who he is sitting with.  He may look to a desk partner’s work to keep him on task.
• Use a kind but firm approach always.  You will get better results.  Yelling does not work - ever.
• Be consistent in word and action.  Make rules and stick to them.
• Pick your battles by deciding what is really important because you can not back down once you have made a request.
• He may fixate on a single thought or activity and stop paying attention to everything else around him.  Therefore he will need monitoring and reminders to keep him on task.
• Keep instructions simple.  The more complex the more frustrated he will become.
• He knows most of the information you are looking but you have to wait for him to retrieve it. 
• Every new situation needs to be explained and modeled exactly as you wish.  Sometimes more than once. Sometimes every time.
• Use social stories to help explain new concepts.
• He is a visual and physical learner.
• After a class lesson he may need to be re-taught one on one. 
• Do not insist on eye contact, he is still listening even when he isn’t looking.
• Intervene before poor behaviour escalates.
• Never miss an opportunity to reinforce good behavior or work.  Verbal praise and rewards like computer time are effective.
• When using a reward/consequence system make sure it is clearly explained and he understands it.  Have him repeat it back to you.  Just because he has been told doesn't necessarily means he comprehends.
• Detention will not work.  Loss of privilege may.  Losing a recess is actually a reward because then he doesn’t have to deal with confusion and difficult situations on the playground. Plus he can draw during detention.
• Make sure all staff, including relief and support staff , know who B is and what his unique needs are.  

B doesn’t have to change for us.  He is who he is.  We need to adapt to him. Change and challenges will happen through out B’s life and it is our job to make sure he has the tools to cope with them and excel.  We are doing our job. Please work with us.

Excellent resource:
Parenting Your Aspergers Child by  Alan Sohn Ed.D and Cathy Grayson, M.A.

Side note:

Those of you who have been following my blog know that I am currently suffering from a tremendous amount of swelling in my brain due to side effects of surgery.  Writing and expressive thought is extremely hard (but not as hard a actually speaking).  Thank you for your patience and understanding if I am not clear when I write.  I am trying very hard.