Coping Techniques - AVM Style

My family is pretty open.  We talk, a lot, about everything.
There are no secrets on the hill; been there, done that and do not wish to repeat the experience. 
John and I have been living with my monster, aka AVM, for about 20 months; 14 post Gamma. Our children, extended family and friends about 18 months.  We still have a long ways to go.

I can't always hide how I'm feeling physically because sometimes it is obvious, despite my excellent acting ability.  We talk about my symptoms and side effects regularly.  We have plans in place in the event of an emergency.

What we haven't talked about much is how it's effecting them.

Obviously there has been an impact.  I know longer drive so I can't always be or get to where we need/want to be.  I know longer work so there is less income.  It also means that John is working more.  I am home all the time and that has pros and cons.  I can't always be mentally or physically available to them like I have been or would like to be.  When they are in school it is less noticeable.  We compensate and juggle the best we can but we are not always successful.  There is lots of planning and little spontaneity.

So this week I took an opportunity to find out whats going on with them.  How they are really feeling. What came out was they are afraid.  Afraid I will have a stroke, afraid I will die, afraid of more change, afraid we will have no money, afraid of the unknown.  I'm afraid too.

What also became evident was how they are coping with their fears. 

Humor was at the top of the list closely followed by sarcasm.  That makes sense considering that's exactly how John and I are coping.  I personally feel that this is a great coping skill.  When life doesn't make sense and there are no answers joke about it.  It can't hurt.

Avoidance - Admittedly our children missed a lot of school last year.  Some days it was just easier for them to be home.  I understand because I sometimes avoid social situations as well.  D chose not to participate in some of her favourite extra curricular activities.  At the time we accepted it but now I realize that she was avoiding people.  D and I are often alone together in public.  We often get stopped and people want to know the ins and outs of my medical status.  They often ask personal questions and I often respond.  She was tired of it and opted out. 

Physical Symptoms - It's hard to ignore the physical symptoms that keep popping up.  B and I both  have very rare serious disorders.  When my family complains about headaches, chest pains, stomach aches, etc etc we have to listen.  We also have so much more work to do when it comes to further medical testing.  My job is to put their mind at ease.  Headaches could be from lack of sleep or not drinking enough water.  Chest pains could be feeling worried or anxious about something. 

Emotional Responses - Fear often manifests it self by change in appetite, sleep disruption, frustration and anger. We are all, at times, a little angry. Let face it; this sucks. It's how we deal with the anger that's  important. Yelling, name calling, bull dozing, rudeness, poor attitude is all shut down pretty quickly. My experience is that a physical activity is required to get rid of some of the negative energy. Yes I have three Karate brown belts living with me. Case in point.

After thinking about it I compiled a list of techniques that we are using to help our children cope with their fears.  At no time do I under mind their fear or tell them not to be afraid.  This is scary.

- We still social story almost everything.  It's a useful techniques for all children not just the exceptional.  If they know what to expect it makes the situation easier.
- We encourage them to talk to us or each other about how they are feeling.
- We have regular medical check ups to reassure they are in good health.  We listen to their physical complaints and  concerns.  We will be following up with gentic testing.
- We eat well and encourage lots of physical activity.
- We try and maintain a routine.  Everyone has regular chores and responsibilities.
- We have down time to play and relax. 
- We spend more time enjoying our community and appreciating what's in our own neighbourhood.
- We talk about being brave and "full of awesome".
- We have asked for help from friends, family, doctors, teachers and social supports when we have needed it. 
- We offer reassurance when ever we can.
- Above all we love and accept each other, even when it's hard.

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 :)

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.

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

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

Thank you, thank you, thank you... and a brief update

As the year comes to an end it only seems appropriate that I thank those who have stood by me (us) on this leg of our adventure.

John - always John.  For everything.  There are not enough words to tell you how truly wonderful this man is. 

A, B and D - They are my reason for being now and always.  They are the reason I chose to have treatment.  I will continue to fight and get well for them.  On the days that it's easier to give up they are the reason I get up and keep going.

Mom, Dad and Jess - Thank you for your love, patience and forgiving me when I don't answer the phone.

Jess B. - Thank you for having a sense of humour, taking me on road trips, trying on hats, keeping me in check and supplied with cake.  Thank you for keeping me a part of the team at work; you really have no idea how important this is for my mental health.  Thank you for keeping it real.

Thank you to Binky and Mel who got me through the first part of this journey and Holly who jumped on board 6 months in.  It mean so much to have people in my life who live it and understand it.

Thank you to many friends who call, visit, ask questions, bring food, flowers, treats and offer rides.  Thank you for the emails, messages and words of encouragement. Thank you for looking after our pets and occasionally our children ;) Thank you again for contributing to my Gamma Music Playlist which I still draw strength from.  Thank you for understanding when I decline invitations; I want to be with you but I know my limits.  Thank you for your patience and love. (I would list you all but then if I left someone out I would feel terrible and you know who you are).

Thank you to the amazing teaching staff and educational assistants at Stuart Baker E.S. and J.D.H.E.S..  I have really stepped back this year and I wouldn't have been able to without their support, diligence and love of my children.  It has lightened my load considerably knowing that all three are being both educated and nurtured at school.

Thank you to my colleagues, management and board members at Community Living Haliburton County who helped us pay for Christmas.  Thank you again to Jess for raising awareness.

Thank you to those who have sent us money and gift cards.  I was trying to think of a better way to say that but to be honest it is what it is.  We are grateful beyond words. 

Thank you to our community for supporting our small business(s) BLACKberry Fields and John Black Carpentry. Thank you for purchasing our eggs, chickens, preserves, blankets, hats and scarves.  Thank you for  understanding when John takes time away from your project to be with us at medical appointments.

We are still at the beginning of this adventure but we are optimistic about the outcome.

I had an MRI on the 21st of December and though we still can't see my AVM due to tremendous swelling. The swelling is beginning to dissipate but slowly.  The hope is once the swelling goes down the side effects will also settle down.  I continue to alter my diet to help with inflammation.  I continue to sleep, a lot. Next brain MRI is scheduled for June and hopefully we will see my AVM and a reduction of blood flow too and from it.  Long term goal is still June 2013 to be AVM free.  Thank you for trying to understand what a very long process this is.  My seizures appear to be under control but I am far from well.  I'm trying.

We are continuing to run tests on my funky heart BUT my brain is still taking top priority.  I have not asked or want a formal diagnosis.  My Cardiologist respects this choice.  My medical team in Toronto is amazing - I thank them as well - and are only an email away if I need them.

B is scheduled for heart ablation surgery on March 19th.  After speaking with his Cardiologist last week we are confident we are making the right decision and the risk of complication is low.  His Neurologist supports this decision.

Thank you, thank you, thank you.  Sending you much love from the hill.


Steph

ASD, AVM, WPW, HHT - our world in acronyms

Our son B is talented, funny and smart.  He loves comics, super heroes and video games. He is genuine, caring and gives the most amazing hugs.  B has Wolffe Parkinson White Syndrome.  He was diagnosed in April 2011 after complaining about a rapid heart beat and severe pain in his chest.  B also has Aspergers Syndrome and rarely, if ever, complains about pain.  At first we thought he may be having anxiety attacks; that makes sense since he has Aspergers. Thankfully we took his complaint seriously and so did his doctor.

We met with a cardiologist in October and decided the best treatment to correct Brenden's accessory pathway is by non invasive Surgical Ablation (not open heart surgery).  Given my diagnosis of an AVM in my brain it was decided that B should also be tested, just in case. 

A couple of weeks ago B had an MRI on his brain and has been scheduled for further testing on his heart and lungs.  On Monday I received a telephone call from Sick Kids Hospital confirming an appointment to follow up with a Neurologist.  I knew that meant one thing... they found something wrong.  On Thursday at a regular pediatrician appointment I read the MRI results myself.  During the MRI it was discovered that B too has an AVM in his left frontal lobe measuring 12mm at the largest point.

Instead of ME having an AVM (congenital, 1% of the population); WE have HHT, Hereditary Homorrhotic Telangiectasia (tel-AN-jee-eck-TAZE-ee-ya). Somehow hearing the worse news ever is so much more devastating when you hear it about your child.

For the past year I have been on an emotional roller coaster ride of questioning, testing, diagnosis, treatment, unpleasant side effects, anger, fear, and hope.  Now I know why...  IF I had never been diagnosed, then we would have had no reason to do further testing on B.  Without further AVM testing his cardiologist would have gone blindly into treatment.  Treatment that could have potentially some very serious risks.

So what now?

• Inform all members of my immediate family.  What they choose to do with this information is up to them.
• Meet with a Neurologist at Sick Kids Hospital on December 5th. See the MRI images and start making a plan.
• Back to Toronto for further testing on B's heart and my brain before Christmas.
• Meet with a my geneticist and a new one who works with children to explore how deep this runs in our family.  Which I am certain will lead to testing of our girls and my parents.
• Remember to breath, live, love and be grateful everyday.

All about awesome...

I'm all about awesome right now thanks to a blog post by "Pigtail Pals - Redefine Girly". I am sharing this letter I wrote to the Vice Principal today.  I don't know about you but I am getting really tired of building my children up at home only for them to be tore down at school. NOBODY is stealing my children's awesome!

I know that there are some really great teachers and I applaud them.  Thank you.  This is MY frustration.  MY issue.  MY blog ;)

Dear Mr. F

After a very difficult spring in grade seven, our daughter A decided to approach the new school year with a new attitude. After a summer recovering from a damaged self esteem and sense of self worth she decided that she was not going to let a few steal her awesome. As you are well aware, grades seven and eight are brutal on teenage girls.

On days one through five of school she was feeling great and excited about the possibilities of the new year. Old conflicts had been forgotten and she was looking forward to a fresh start. On day six she came home frustrated and angry. Discouraged and confused. Questioning why a student was centered out in front of the entire class and told that they belong in "coaching" aka "special education". She was offended and so am I. She was very concerned that four students cried during this "group circle".

I would like to know why it was felt necessary to speak to the entire class regarding a few students behaviour in Miss W English class. Are the other teachers also expressing difficulty with the entire class? Why are students being encouraged to talk and speak their mind only to be told they are wrong and that their opinions are not valid? It is becoming increasingly difficult as a parent to support your methods as a vice principle when my daughter know longer trusts you or the "system". As I have said to you before in a previous email (November 2010 re: B) I believe it the responsibility of the staff at (school) to model appropriate behaviour. If staff do not show respect to the students, how do they expect to receive respect in return?

This is how A feels. This is her perception of what happened at "group circle". I would love to have the opportunity to discuss what message you were trying to convey.

Thank you for your attention to this matter.

Regards,

S

*** Just to let everyone know I spoke with the VP. Great conversation - honest and respectful. He acknowledged and validated my and A's concerns and frustrations. I am empathetic to his frustrations. He has a very tough job.

I made it very clear that the behaviour of a few does not represent the entire class. Deal with those kids. The rest of the class has been putting up with challenging dynamics for the past 9 years. The education system failed this group years ago and he is coming in with too little too late. 

I also told him that his message was lost to the entire class. All they heard was that he is taking away their power, cancelling their class trip and that a fellow classmate belongs in special ed.   Not a great start for this class.  Hopefully they will learn to trust him again; if not it's going to be a very long year for everyone.

13

You may recall that I said the other day that I consider myself a pretty good parent AND that I am aware of what's going on in the lives of my children and their friends....then I remembered that I am also raising a teenage girl.  All "good parenting" goes out the window when you have a 13 year old girl.  I think that I am reasonable and open minded; then I open mouth and everything I swore I would never say is on the tip of my tongue.

I hear from other parents and teachers how wonderful she is.  Most of the time  at home she is happy, kind, caring and funny. Then, she is not.  I guess I'm glad she saves it for me.

As for their friends you only really know what your child tells you.  The colour they are painted is based on the information you receive.  I know that I am getting the filtered version (or the perception of her 13 year old brain).  I am surprised at some of the things I hear about what goes on at school.  Then I remember that other parents are probably hearing the same things about my child.

To all Teenage Girls... Hug your Mom.  We are trying so hard to do and say the right things. 
To all the other Mothers of Teenage Girls... I'll help you stay sane if you help me.
To my Mother... I am so sorry.

Parenting B....

I consider myself to be a pretty good parent.  I am aware of what’s going on in the lives of my children and their friends.  We have rules and consequences.  We have a routine and lots of structure.  We are consistent.  I believe that, one day, they are all going to have the necessary tools to tackle the world on their own.  Some days are more challenging than others to be a good parent. Today is one of those days.

Our son B has Aspergers Syndrome.  He was diagnosed when he was five.  As he gets older he can explain his feelings and thoughts clearly; helping us better understand his needs.  Most of the time he is a typical, almost 11 year old, boy.  He is happy, funny and a great artist.  He loves video games and superheroes.

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As going back to school approaches the mood in our home is changing.  B’s anxiety is on the rise affecting my own level of calm.  He is picking fights with me so he has a valid reason to be mad.  In his different kind of mind he can rationalize that he shouldn’t be angry about going back to school because everyone is; but if he is angry that I will not purchase him a new gaming system it’s a valid emotion.  Sigh….

For every child a new school year, new grade, new peer group can cause some jitters.  For B it can be overwhelming. Thanks to small miracles he has the same teacher and Educational Assistant as last year.  That will make the transition from summer to fall a little easier on all of us.  

B grew over the summer, which means new shoes, new clothes and more annoying tags to cut.  Smalls things like keeping his backpack and lunch bag from last year will make it easier on all of us.  No way am I to buy him a calculator, though I am sure it’s a requirement in grade six.  Mechanical pencils only please!

My challenges this week will be:
·      Getting him to bed and up again at decent hour.  Bus comes at 7:45am!
·      All screen time needs to be pared back so he can focus while at school.
·      Reading!  The summer reading list was abandoned week two as he insisted he was reading every time he had to do a search on the internet. Some things are not worth arguing about.

Normally these are all things I try to maintain throughout the summer but this year I dropped the ball.  Busy recovering I guess.  Surely something I will pay for in the weeks to come.  Wish me luck.

Becoming a minimalist...

Today is the day for cleaning out closets, cubbies and drawers.  I am beginning to feel like I am on an episode of Hoarders.

There are five people living in this house and this morning I counted 13 pairs of shoes in our muddy room.  Flip flops, running shoes, rubber boots, work boots, sandals and more.  That number will quadruple when I actually open the closet door. 

The linen closet is another nightmare.  Why am I saving curtains that are sun faded?  I will never dye them.  Do I still need a vaporizer that I haven’t used in three years?  Why are light bulbs being stored in the linen closet yet I don’t have a shelf for my extra towels?  Why do I need extra towels? When was the last time I used those sheets?  Our youngest is almost eight; I guess it’s time to get rid of the last of the bibs and receiving blankets. 

In the past three months we have had three garbage bags of hand me down given to us.  I love receiving hand me downs from older cousins and friends. We have multiple totes of clothing that I have been saving until someone grows into it. Hand me downs save us lots of money every year but I could seriously open a thrift store right now. Today we will spend hours sorting, purging and bagging up unneeded items. Keep what we need and give away the rest to others who could use them.

My friend P recently shared with me that she believes everything should have a place.  If you are saving a trophy, toy or memento from your childhood then it should be honored and on display not keep it packed away in a box on the top shelf of the closet. I like it.  If you can’t honor it, get rid of it.  If you haven’t used it in six months, get rid of it. If it doesn’t fit, get rid of it.   If you resent having to dust it, get rid of it.  If it’s taking up space that you need, get rid of it.

I envy people who have just what they need and no more.  In theory if there is less clutter in my home then I will have less clutter in my brain.  I like it.  So I will add becoming a minimalist on my list of goals to accomplish over the next three years.    It will likely take all three years with the amount of things I need to go through.