Showing posts with label Education. Show all posts
Showing posts with label Education. Show all posts

Tuesday, 21 February 2012

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.

Saturday, 26 November 2011

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.

Tuesday, 13 September 2011

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.

Tuesday, 23 August 2011

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.