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.

Friendship

People who have warm friends are healthier and happier than those who have none. A single real friend is a treasure worth more than gold or precious stones. Money can buy many things, good and evil. All the wealth of the world could not buy you a friend or pay you for the loss of one.
G. D. Prentice

Last week I had a sad week.  I'm not sure how it sneaked up on me but it did.  Those who know me well know that I am optimistic and spin a little sunshine onto most everything.  I have a sense of humor. Last week I couldn't find it.  I looked but it just wasn't there. Maybe it was a case of the February blahs but I felt very much alone.  Like I didn't have a friend left in the world.

I am learning on my journey that there are all kinds of friends and friendships.  Each unique and special in its own way.  Some are deeper than others but they are all meaningful.  Every interaction gives and takes.  Some more than others.

Over the past several years I have surrounded myself with some smart, professional and very busy women.  We have shared values and beliefs.  We enjoy the same activities.  We have some amazing conversations.  We can laugh together.  Some of my  favourite people are also mothers of multiple young children. Some have full time jobs and full time families. The key word here is BUSY.

My old life has almost come to a stand still in so many ways.  I no longer drive therefore I'm not at the school, grocery store, dance lessons or yoga class,  where my friends are.  I have multiple, not so fun side effects so I can forget about going out in the evening unless I do tons of prep work prior.  Sometimes I make plans with friends then have to cancel because I'm not well enough to attend. Last summer I went on holidays with some childhood friends.  I thought I was having a good time until I realized I had medicated myself,  with an anti anxiety medication, for the entire week in order to survive it.  I haven't spoken to two of those friends since.

My closest friend right now is a stranger that lives 950 km away.  Brought together by fate, we are living parallel lives.  Besides John, she is the only one who really understands.  She is my constant, unwavering, most loyal friend and it took a monster to help us find each other.

Many of my friends lives have carried on.  BUSY.  Some friends have left me completely behind.  BUSY. Some are less available.  BUSY.  Some are completely available but I can no longer keep up.  BUSY.  My good friends continue to call, message and invite. They continue to include me in their lives and are still interested in mine. I am grateful for those friends.  I suppose I could work a little harder on other friendships but.... BUSY.  And my family.... I won't even go there.

Listening to my body

As a woman, mother, wife and employee I have often pushed past discomfort, pain and exhaustion to get just one more thing done.  My body was trying to tell me to slow down, take a break, STOP but I often didn't listen - if ever.  The constant pressure I put on myself  to do and to know often left me feeling grouchy and tired by 7pm.  But I never listened.  I carried on.

 My AVM diagnosis interrupted my life and the side effects of treatment has left me "disabled" or differently-abled. I was forced to start listening to my body or immediately suffer the consequences.  I still have much of the same drive and determination I always did but I now work on my bodies timetable.

Instead of eating what ever, when ever I have to plan my meals.  I rarely if ever feel really hungry (a side effect from my anticonvulsant) but my body needs good, whole foods to decrease inflammation in my brain and help me heal.  I can no longer eat wheat and most dairy because my body doesn't tolerate it well.  I'm not following some weird, quirky trend. I am listening when my body tells me it would rather have yummy left overs for breakfast than sugary cereal.

I have always been a morning person.  I have always enjoyed going to bed fairly early.  I like sleep.  Now I have to do as much as possible before noon or it will not get done and my list will grow. I have to schedule appointments and telephone calls early in the day or risk not being able communicate my needs.  Now I have to rest or sleep in the afternoon or I will not be able to function through dinner.  Now I always sleep when I am tired because I am listening to my body.

I love exercise and fitness classes.  I know you are thinking, really?? No it's true, I do.  I loved being a member of the gym, taking dance and yoga classes.  I love walking, hiking and swimming.  My body feels wonderful and alive when I am done.  My truth is I rarely made time for those activities because I had scheduled myself too tight during the day and I felt guilty leaving my family in the evening.  Now I have tons of time during the day but less freedom, money and energy.  I can't even safely walk the dogs or go snow shoeing alone. Evening classes would be a disaster.  What I do have is a computer, DVD player, space, yoga mat, weights, running shoes.  In order to listen to my bodies needs I workout every morning before 9 and feel fabulous for it.  If I can drop a few pounds in the process that would be great but it's not the goal.

Pain is bad.  If I am feeling pain anywhere it means I need to stop and listen to what my body is trying to say.  I can't mask pain and carry on like I use to with over the counter medication or I risk having a stroke.  So now I listen and the pain will subside with ice and sleep.

Listen, always listen, to what your body is telling you.  Your body knows what it needs. 

Lessons my AVM has taught me - Letting go

So lets face it;  I could spend all day, almost every day telling you how horrible it is waiting for my head to explode.  How debilitating the side effects from radiation are. How expensive my seizure medication is ect, ect. But I won't.  Instead I will tell you the life lessons I am learning along the way.

While watching my children wait for their school bus this morning, from the comfort of my kitchen coffee in hand, I was reflecting on how I have evolved as a parent this past year.

I don't think I ever classified myself as a helicopter parent, always hovering about to protect them from danger, but I am very aware.  I admit I tend to remind them a little too often to be careful, slow down and I have always been an arms length away at the playground.  I referred to myself as "the Unfun Mom" this past summer  when I heard one too many times, from another Mother's child, "awe but we are just trying to have fun."  I want my children to explore, challenge themselves and have tons of fun - while carefully weighing the pro and cons of their actions.  We have had broken ankles, noses and many bruises so I felt justified.

This morning D asked to go outside and play in the snow a half an hour before the bus was due to arrive.  It was barely light out but away she went, fearlessly.  Last winter I would have cautioned her about not getting too wet before the bus came, pointed out the obvious lack of light, cautioned her of strangers, animals, traffic and being buried alive in the snow (???).  Today I kissed her goodbye and sent her on her way.  Her siblings slowly straggled after her.  She was joined by the three girls down the road.  I watched them collectively climb the giant snow banks, roll snow balls and have a fantastic time all before 8am.

I am slowly learning to let go a little.  To live moment to moment.  I don't have to have a detailed plan for everything life event.  At first I felt guilty.  Like I wasn't engaged enough.  That my AVM exhaustion was now making me a "bad" parent.  However, while watching these three amazing children play I had a light bulb moment.

Our children are resilient, smart and amazing because we gave them the tools to be so.  Now it's time for us to step back and let them figure things out for themselves a little more.  If they don't have the freedom to take risks and make mistakes how will they learn from them?  I trust them and they will always have us for back up.

One more thing I know to be true... It's okay to eat cookies for supper occasionally:)

Sending you happy thoughts from the hill..

Steph

If I only knew and the conflict between two minds...

I want to start my post by saying that I never intended this blog to be everything AVM.  I usually have many opinions that I like to share on lots of subjects.  I once considered myself an expert on many things.  I thought I would write about those things.  As it turns out the monster who lives in my brain, aka the AVM, rules my world.  This is not my choice but my new normal.

My Mom recently asked me if I knew then what I know now would I have chosen to have Gamma Knife Surgery.  The answer with out a doubt was - No, never!  I wish I never knew.  I wish I could have continued to live my life as I was. I wish I had my life back. I wish to live seizure and side effect free.  I wish for simple. Gamma was my only option besides do nothing.  I was reassured that it was safe and side effects were rare.  I was assured I could return to work as normal after 48 hours.

This has not been my experience.  I am currently waiting to hear from my Neurologist.  I need answers that I hope he can provide without me traveling to Toronto.  I am emotional, tired, angry and continuing to have seizure activity.  I didn't sign up for this.

My friend Melissa reminded me this morning that my side effects could indicate that the treatment is working.  I needed to hear that and I thank her.  It has put things back into perspective a little.

I chose to have Gamma because doing nothing was not an option.  I don't want to have a stroke and risk dying at 36.  I watched close up what it was like for three boys to lose their Daddy and his Wife and family struggle to carry on without him.  I don't want that for John or my children if I can do anything to prevent it.  I want to help raise my young family, even if it means I have to do it differently.  I want to live a productive life even if it is not the life I originally chose.

Today I choose to make peace with my side effects.  I will take them as they come.  I will cope the best I can.  I will continue to self advocate and ask questions.  I will call my Cardiologist and actually acknowledge that something is wrong with my heart.  I will continue to ask for and accept the support and understanding of John, my family and friends even when I make it hard.   I will try to remember that my children are just that, children, and they will not always be sympathetic to the situation and that's okay. I will continue to heal on my monsters time table.

Stephanie

Where I'm at... this is not a pity party.

For the past 13 years I have worked as a Social Worker, Early Childhood Educator, Parent Support Worker, Developmental Service Worker or a combination of all for four different agencies in my community. I have been a board member, a manager, on the front line and a volunteer. I have worked with and supported a diverse group of people and their families. I have partnered with community groups, agencies and the medical community on a number of different projects.  I am educated. I have always taken pride in putting people before paper work.

 This morning I learned the system is flawed beyond belief.  Maybe I always knew but I hoped I could help change it. Maybe through this experience I still can advocate for change.  Right now I am just frustrated.

In 2011 I worked exactly 18 shifts.  Nine prior to treatment and nine post.  I want to work.  I enjoy working.  I believe I still have a a lot to offer.  My reality is I can not.  I am not well.  It's not safe.  Period.

My other reality is I still have a family, a mortgage and financial obligations.  All the same things I had while I was working.  Fifteen weeks of sick leave through Employment Insurance is long gone.  I have no Long Term Disability through work.  I do not qualify for Ontario Works (municipal) and Ontario Disability Support Program (provincial) because they look at a families income not that of the individual.

Don't get me wrong I value my family above and beyond everything else.  But what happened to Stephanie as the individual?  Why did I contribute to MY to income tax and employment insurance if I can't utilize it when I need it?  I have applied to Canada Pension Plan - Disability and I can expect an answer by APRIL.  So in a nut shell I can't access programs I have contributed to because I belong to a family. My doctors and I have done our part but it will still take up to 24 weeks for the government to approve my claim.  I don't want to even think about the very real possibility that my claim will be denied.

This morning I found out that I do not qualify for my mortgage disability insurance (which I have paid since I was 20 years old) because I haven't had a stroke, yet. Huh. So just to clarify IF I had cancer, a heart attack or already had a stroke, no problem.  But because I can't work due to treatment I have received to prevent a stroke I don't qualify.  Oh, on a brighter side if the doctor tells them I have less than 12 months to live I do qualify! What?!  So now I have added Michelle from TD Financial Insurance Department to the short list of people John needs to call to get help IF I have a stroke.  Fantastic.

The system is flawed.

Now let me tell you what I am grateful for and what I am going to focus on....

• We are happy and healthy (if you don't count my earlier rant and all those acronyms :)
• We have a freezer full of food and I have the skills required to make healthy meals for my family.
• We are warm.
• We have a beautiful home and lots of land with many resources.
• Our bills are paid up to date.
• John is working.  (Feel free to refer him :)
• "Someone" just had furnace oil delivered to our house free of charge because they knew we would need it before the end of the winter.  Thank you...

Sending you gratitude and positive thoughts from the hill.

Steph