Tag Archives: Education

Help! IEP Time!

23 Mar

Yes, it’s that time of year again – Time for the annual review of my son’s Individualized Education Plan (IEP).  Even though this is only a review of our existing plan, and things have been going really well for my son this year, I still feel nervous and concerned.  Let’s face it, the entire process is extremely intimidating and nerve-wracking to a parent.  Without fail, I don’t sleep the night before, I can’t eat anything that morning and during the meeting – I cry…  Yep, no matter if what is said about Gregory is positive or negative….I cry.  (Trust me – crying when receiving good news is even more mortifying than crying when receiving bad news….  ;-\)  I can’t help it; so much of myself (my efforts, my concerns, my dreams, my love, etc.) is wrapped up in my children, the emotion and the nerves just get too much for me to contain.  Well, that and the fact that I’m a total sap…

Anyway, in the hope of helping other parents in a similar position (criers or not!), I am dedicating this series of blog posts to ways to make the most of your child’s IEP process.  I’ve received a number of comments and questions on my blog regarding IEPs, so I know I am not alone in my feelings.

A good IEP is a vitally important support for your child’s future, but the entire process is confusing, fraught with emotion, and bounded by fears that even though your child is counting on you, you might not be up to the task. With so much riding on it, no wonder parents feel so daunted, anxious and overwhelmed!  Maybe a few of these suggestions will help.

Be forewarned – this is going to be a long post.  This is an important topic with a lot of ground to cover….  So as not to overwhelmed you, I’ve broken the subject into several posts.  This first post in the series focuses on the up-front legwork needed to help the IEP process go more smoothly.  So, grab a cup of coffee, take the phone off the hook and settle in…

Does Your Child Need an IEP?

You know that your child is struggling and needs help….The very first thing you must do is determine whether or not your child needs services from the school’s Special Services, or if other paths might be a better approach.  Here are a few questions to ask yourself objectively:

1.  Must your child’s needs be met during school (i.e. academic support, resource room, etc.) or might they be better met in another setting, such as tutoring at home, physical therapist (PT) at the clinician’s office or social skills in a group setting? (Finances, of course, play into this equation, since many times medical insurance doesn’t [fully] cover these types of services…)

2.  So, you’ve identified that your child needs help during school.  Now, can these needs be met within General Education, instead of Special Education?

  • My advice would be to try more direct methods first, by working directly with the General Education teacher and Guidance Councilor.  Together, you may be able to provide additional supports, behavior modifications, etc. within the general education classroom that would not require that your child to be officially ‘classified’ within the Special Education department.  For example, teachers will frequently spend extra time with a child who needs extra help.  Small group instruction (pull-out/resource room) may also be available for specific subjects.
  • The school may decide that a formal Intervention and Referral Services (INRS) team meeting is required to discuss your child’s needs and possible interventions.  This can be a good thing, as it formalizes your child’s issues and any agreed upon interventions.

3. You’ve identified that your child needs help during school, but the unofficial assistance or INRS interventions are not sufficient. Is your child eligible for Special Services? To determine this, you must formally request (in writing) that your child be evaluated by the Child Study Team (CST) of your school or district.  The CST is made of up two or more certified personnel, including the school psychologist, learning disabilities teacher and social worker.  This evaluation will assess your child functionally, academically, behaviorally and psychologically to determine where any issues or deficits exist.  The evaluation will be based on standardized testing, observations, interviews and a review of developmental and educational history.

  • A specific diagnosis of your child’s problem(s) by an outside doctor or professional may be helpful, but it is not necessary.  The IEP eligibility determination is based on academic performance and behavioral issues at school, with or without a formal diagnosis.
  • In any case, don’t wait to obtain a diagnosis report from your doctor before requesting the CST evaluation.  The process takes several months to complete and the school is not required to accept an outside diagnosis or recommendation.  The school may in fact, decide to hire its own doctor to conduct an assessment during the evaluation process.

Special Note:  If your child’s teacher or Guidance Councilor is the one who raises concerns and recommends an evaluation, be open to hearing a difficult ‘truth’.  It may be a shock to you, or you may already have had concerns of your own, but it still can be hard to acknowledge that your child is struggling.  It won’t help your child for you to deny that their difficulties exist, so stay focused on your child’s best interest.  Keep in mind that teachers see many children over the years, so they can be more objective about identifying when problems exist.  They also see your child in a different setting and circumstances that you do.  It doesn’t mean the teachers/councilors are always correct, but it is at least worth listening to their concerns and perspectives.

On the plus side, if the school suggests the evaluation, you are much less likely to have a battle on your hands to get the help that your child needs.  And rest assured, no evaluation may be conducted on your child without your written permission.

Preparation

So….you’ve decided to pursue an evaluation by the CST.  Now it is time to do your homework!  To make the most of the IEP process, it is vital that you do adequate preparation.  You are the expert on your child and must stand as his staunchest advocate.  So, be sure to cover these following steps for the best outcome for your child.

1. Understand your Child

Take time to really understand your child’s strengths, weaknesses, personality traits and interests. Be specific about your goals and desired outcomes.  It is not enough that your want your child to be ‘happy’ or to ‘reach his full potential’.  You need to have concrete goals, such as ‘read at grade level’, ‘ interact appropriately with peers’, etc.  A great tool to help parents with this soul-searching step is Hopes and Dreams – An IEP Guide for Parents of Children with Autism Spectrum Disorders, by Kirby Lentz, Ed.D.

2. Educate Yourself

To adequately prepare yourself for the challenges ahead, you need to do your research and educate yourself as much as possible:

  • Talk to others.  Many parents and professionals have been through the experience with Special Education and the IEP process before you.  Glean as much information and perspective as you can from those who have already gone through it.  And don’t limit yourself to just parents in your district.  Parents from other towns and even other states can provide valuable insights, as well as potential alternative approaches/services.
  • Go Off-the-Record. If at all possible, talk to your child’s teachers and administrators privately.  In so doing however, keep in mind that these individuals have a necessary allegiance to their employer (the school district) and may not be in a position to make official suggestions or recommendations.  Respect this and try to elicit open, honest dialogue by speaking off-the-record.  You can gain valuable insights into your child, available services and the system in general, from someone ‘on the inside’.  Be sure however, to always honor the ‘off the record’ status and never quote or reference those private discussions (or you’ve just burned that bridge for the future – yours and any parent following you…)
  • Attend Seminars. Many Special Education parent advocacy groups (such as the Statewide Parents Advocacy Network (SPAN) in NJ) offer free IEP seminars to parents.  Autism support organizations frequently offer seminars and conferences throughout the year – on all sorts of related topics – so be sure to get on their mailing lists.

3. Plan Your Strategy

Ok, now that you have fully educated yourself about your child, your rights, the process and the available therapies, it is time to strategize.

  • Be Realistic and Flexible in your Demands.  Yes, you want the world for your child, but be realistic about how much your child can reasonably handle at one time.
    • Focus on your top priorities at this point in time.  Priorities shift over time, as your child develops and his/her needs and issues change – and so can the IEP….it is not carved in stone, and may be modified at any time.  Identify a list of ‘ nice to have’ services.  These are not your top priorities, but if you school is willing to provide them, then great.  If not, you at least have a bargaining chip.
    • By understanding what services are in place and readily available within your district, you may be able to work within the system to meet your goals…maybe not all, but most.  Just because you heard about a great new treatment option that you are convinced will benefit your child, doesn’t mean that your school district will – or even can – provide it to your child.  The school is limited to a set of standard, proven and approved therapies (i.e. ABA Therapy).  You may need to work very hard to get a new therapy/approach onto this ‘approved’ list of services.
    • Be open to supplementing with services, therapies and/or supports outside of school – and to trying new approaches.  It may not be exactly or everything you were hoping for, but every little bit helps.
  • Walk in Their Shoes. When negotiating anything, it is vital to understand the other side’s position, goals and constraints, so that you have a better chance of developing a win/win result.  In this case, understand that the school district has a different set of priorities and goals than you do.
    • Special Services is tasked with providing an ‘equal’ and ‘adequate’ education to your child and they are held to budgetary and administrative constraints dictated by the government, Board of Education and other bodies.  Schools do not have unlimited resources (manpower or funds), so they need to apply those resources judiciously to provide the most benefit to the most children.  (And as taxpayers, we want them to spend our tax dollars wisely, don’t we????)
    • Acknowledge that unlike you as the parent, the school is not looking (nor is obligated) to provide the ‘best’ education for your child.  You are concerned with helping your child be the best that he/she can be, but the school’s primary concern is that your child is educated to the established standards.
  • Seek Support.  If you suspect that there may be some question about your child’s eligibility for Special Education, or if you are just not confident tackling the process on your own, consider speaking with and perhaps hiring an advocate.  Some districts/states automatically provide parents with an experienced parent advocate to facilitate the process, which can be an invaluable resource.

Initiating an IEP and dealing with Special Services can be overwhelming, emotional and intimidating, however with the appropriate preparation and planning, you can make the most of the process for your child. You can better understand your child’s challenges and work together with the school’s ‘team’ to meet your child’s needs most effectively – and that’s what I call a win/win!

Stay tuned for Part II of Making the Most of your IEP….

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How Rude!

5 Oct

Have you ever been mortified by something rude or tactless that your child has said or done in public?  Or worse yet, been the one to insert ‘foot in mouth’?   I can answer a resounding YES! to both questions.  I’m sure we have all experienced something similar (and wish we could forget!)  One time, I was in a bar and there was this cage…..well anyway, I’d better keep that one to myself, I think!  😉

It happens to the best of us and for the most part, our fellow citizens (especially if they know us) forgive the occasional faux pas.  We apologize, laugh it off and try to smooth over the awkwardness.  If social mishaps occur frequently however, the response changes.  People start to get annoyed, avoid, and maybe even chastise the ‘offender’.  After giving offense too often or perhaps with insufficient remorse, we soon get labeled as odd, self-centered or rude.  Socializing and working within a team become increasingly difficult and we are left out in the cold.

It’s not nice, but that’s how society works.  Disapproval and shunning are the tools society uses to enforce the rules of social engagement.  These rules, which form the unwritten guidelines for social behavior, are critical to keeping society running smoothly.

The Hidden Curriculum – Part II – Manners

As discussed in my previous blog The Hidden Curriculum, Aspies and others with social-cognitive learning disabilities, can have great difficulty decoding these hidden rules.  This inability to correctly interpret social nuance means Aspies make social faux pas…repeatedly…often without remorse…perhaps without even understanding that a rule was broken.  The result?  Being made an ‘outsider’ in society.

Previously, I outlined a few methods that may be used effectively to help explicitly teach some of these social rules.  This week, the focus is on manners, those pesky little rules from our mothers – Those customs and traditions of society that govern how people treat one another and behave in social situations.  In today’s world where these common courtesies are becoming increasingly uncommon, learning about etiquette and manners is important for every child – not just Aspies.

Below are some of the methods to teach kids the ‘mannerly way of life’.  (But parents are welcome too!)

1.  Model Good Behavior

The first rule of teaching any behavior or skill is to model it yourself.  As Gandhi once said, “Be the change you want to see in the world.”  Demonstrate the correct behavior and with a bit of luck, your child follows suit.  Hopefully, we parents exhibit good manners naturally – modeling the desired behaviors unconsciously on a daily basis.  If however, you are a bit of a slacker at home (hmmm…my husband Barry comes to mind… 🙂 ) then you may need to step up your etiquette game.  Show respect and treat your family members like favored guests.  Be sure to use ‘please’ and ‘thank you’ regularly – to your spouse and your kids.

I’ve been compared at times, to a drill sergeant, issuing orders in the morning like a rapid-fire machine gun, trying to get everything organized and everyone out the door on time.  It might be efficient, but it is stressful, unpleasant for everyone and definitely not ‘mannerly’.  Although I tend to forget, my kids and hubby are not minions at my beck and call – and shouldn’t be treated as such.  It is much better to organize things the night before, and enjoy a calm, pleasant morning by making polite requests and kind acknowledgements.

But modeling good behavior doesn’t stop at home.  Keep in mind that your kids are always watching you and your example – in the car when you swear at that bad driver, in the grocery store when you are rude to the cashier, and at the playground when you talk behind someone’s back.  It is not easy to always stand tall and take the high courteous ground, but remember those eyes are always on you.  Do your best…

2.  State Expectations Ahead of Time

One very effective tactic to teaching good manners is to explicitly state the expectations of behavior immediately before the occasion.  For example, we have ‘Restaurant Rules’, which get reiterated right before we enter a restaurant.  We outline examples of good restaurant behavior (not bothering other diners, saying please and thank you to the waiter, etc.) and bad (complaining loudly about the food, listening to other conversations, etc.).  Our little lambs still need some reminding during the course of a meal, but at least the expectations are well understood.  And although our kids are far from perfect restaurant guests, they have been complimented on numerous occasions by restaurant staff and other diners for their good manners.

3.  Have a Code Word or Action

Even if kids know proper behavior, they sometimes forget.  (Children do have a tendency to behave childishly…)  It is helpful to have a secret code word/phrase (such as ‘quiet hands’) or action (such as a touch to your noise), that coupled with a meaningful look on your part, will discretely indicate a breach of etiquette to your child.  Hopefully that subtle reminder will be enough to correct the situation.  If need be though, the more direct approach has been used by moms for centuries:  The old faithful “Johnny, what do you saaaaayyyy????” is usually effective to prompt a courteous ‘Thank You” from your little cherub.

4.  Read Manners or Etiquette Books

A book won’t take the place of direct instruction, but is a great tool to reinforce your teachings.  One of my favorite books about manners for kids is How Rude! – The Teenager’s Guide to Good Manners, Proper Behavior and Not Grossing People Out by Alex J. Packer, PhD.  This book is not geared specifically toward kids on the spectrum, but its cartoons, teen-relevance and irreverent presentation make it a great and fun resource.  It is so humorous and entertaining (not at all preachy, boring or dull) that Gregory (and his siblings!) actually WANTS to read it, laughing along as he learns the basics of polite behavior in all kinds of situations.

Manners are a critical component of the Hidden Curriculum. Rules of good behavior must be explicitly taught to those with social-cognitive learning disabilities, but every child should receive these valuable etiquette lessons.  Because in society…We all benefit from polite social interactions:

  • Good manners put people at ease and make them feel good – about themselves and each other.
  • Good manners impress people and are attractive to friends, teachers, employers, etc.
  • Good manners allow people to live and work together more harmoniously and productively.
  • Good manners build self-esteem through respect and kindness.
  • Good manners are free!

This concludes our manner lesson for the day.  I have to go now…My kids are beating each other up – and they aren’t doing it very politely! 😉

The Hidden Curriculum

21 Sep

In the Autism/Aspergers world, I’m what is known as a neurotypical or NT, while my son is known as an Aspie or Aspergian.  Although some (like my older brother!) might argue that I am anything BUT ‘normal’, my brain does function fairly typically.  The brains of people with Autism and Aspergers however, do not, and this enables them to see the world in atypical ways.  As such, in my efforts to parent successfully, I’ve had to adjust my NT thinking, to try to see the world through my son’s eyes…with his Aspie brain and unique perspectives on life.  And this has taken some getting used to….

Without realizing it, neurotypical folks constantly, instantaneously and seamlessly survey the written rules or ‘hidden curriculum’ of every environment and every person [we] encounter, to make decisions about how to proceed successfully within a given context.[1]

The hidden curriculum refers to a set of rules or guidelines about social behavior that are often not directly taught.  It is assumed knowledge that helps lubricate the cogs of society and enables groups of people to live, work and interact together harmoniously.  These rules are wide-reaching and complex, covering a variety of topics from table manners to slang words, dating protocol to classroom etiquette…and much more.  Virtually every aspect of our daily lives is based upon a foundation of hidden curricula – widely-held assumed knowledge that we probably don’t even remember learning.

We don’t recall learning most of these rules, because “everybody just KNOWS that!”  We NTs are unconscious social navigators and learn naturally through observation and intuition.  We take it for granted that all relatively smart people should be able to acquire these skills in the same manner.  Unfortunately, for those with Aspie brains, these skills are not acquired naturally.  In spite of being potentially brilliant in other intellectual arenas, they have what is called social-cognitive learning disabilities when it comes to the hidden curriculum

An example of this lack of common understanding occurred recently in our home.  Gregory had been dared to do something stupid [my words!] by another boy, so he did it.  When I questioned Greg about why, he answered, “because he dared me…I had to.”  But, instead of reprimanding him for making a bad decision, I backed up and reconsidered.  “Greg, just because someone dares you to do something, doesn’t mean you HAVE to do it.  You can CHOOSE to accept the dare or not.”  Greg looked at me in amazement…”You can?”   He had totally misunderstood the social rule and believed that there was no option with a dare – no matter how stupid.  I shudder to think what might have happened if he still believed that ‘rule’ into his teenage years…Yikes!!!

So, this deficit can create significant problems.  The inability to develop adequate social skills and interpret social nuance of those around them brings life-long challenges to Aspies.  We, as NT adults in society, are willing to explain and excuse social ‘misbehaviors’ in very young children, but as they get older, kids and certainly adults are expected to know these unwritten, unspoken items of general understanding.  How do we react when someone breaks the ‘social code’?  We are shocked, upset, angry and perhaps even disgusted.  “How rude!” or “Weirdo” or “Can you believe this guy?” rings through our heads.  Because, breaking a hidden curriculum rule can make that person a social misfit or even a social outcast. 

What can we do to help those with social-cognitive deficits?  These individuals must learn the hidden curriculum by direct instruction versus intuition.  Parents and educators must become ‘social anthropologists’ to first determine various hidden curriculum items and then find ways to teach them.  This is not an easy task, because we assume everyone knows the assumed knowledge!  We literally don’t know what to teach them, because we don’t know what we know…

One of the primary ways to recognize an example of hidden curriculum is when an error occurs.  When a teenager addresses the principal as “Dude” or when a young man at the urinal drops his pants all the way to the floor.  When a girl texts using ALL CAPS and the receiver thinks she is shouting at her.  When a man in an office talks over his boss to correct the boss’s ‘error’.  When a woman talks loudly in church or during a movie….you name it  – There are rules for just about every interaction we have on a daily basis.  And when a rule is broken, people notice.

To make things even harder for Aspies, the hidden curriculum is not just vast, but it is complex and elusive as well.  The rules change across age, gender, who you are with, culture, environment, etc.  And to add another layer of complexity, most Aspies have difficulty generalizing, so what they have learned for one situation may or may not be carried over to a similar situation – the hidden curriculum rules must be explicitly taught for each scenario!

There are a variety of methods that may be used to help your child acquire unwritten social knowledge, many of which you can read about in available reference material.  One fabulous book, from which I gained my first insights into this area, is called The Hidden Curriculum by Brenda Smith Myles.  Here are a few methods from the book that I have employed successfully with my son:

1.  Safe Person

Identify one or more ‘safe people’ at home, school, camp, etc. who can help your child with Hidden Curriculum questions.  Your child should trust this person and be willing to ask about social questions.  This parent, teacher, mentor or close friend should understand the deficit and be willing and able to provide accurate, clear clarification to the meaning of words, phrases and situations.

2.  Social Narratives

Social narratives describe social cues and appropriate responses to social behavior and are useful in teaching a new social skill in advance of the situation.  Social narratives often use pictures or cartoons to promote self-awareness and self-management.  The most popular social narrative type is Social Stories by Carol Gray, which prescribes a specific framework for the narrative.

3.  Social Autopsies

The renown educator Richard Lavoie developed the concept of social autopsy to help students understand social mistakes – after the fact.  This method clarifies what exactly happened and then enables the child to see the cause/effect relationship between his behavior and people’s reaction to it.

4.  Direct Instruction

The direct instruction method is the one that I use most frequently in our daily lives, albeit informally.  Through direct instruction the teacher models (or states) correct behaviors and the students practices correct or alternative behavioral responses.  One great tool for direct instruction is the Hidden Curriculum One-A-Day Calendar for Kids by the Blackwell Family.  For each day of the calendar year, there is one specific need-to-know lesson.  In our home, we read the calendar item at dinner time and then use it as a jumping off point for discussion and explanation.

 

These days, I often explain situations and teach the unwritten rules of our daily lives.  I am never sure how much Greg has absorbed about the hidden curriculum on his own, so I explicitly try to help him “navigate body language and social mores in the uncharted areas between the words.”[2]  I guess I’ve been a bit over zealous lately however, because the other day Greg groaned and said, “Mom, can you please stop making everything into a lesson!”  Note taken!

Understanding the hidden curriculum is vital to the acquisition of good social skills, independence and a fulfilling life.  Most of us learn these rules naturally, but Aspies need a road map to our complex, elusive NT social world.  So please – let us all practice tolerance.  Let’s open our NT minds and try not to judge ‘misbehaviors’ too quickly…. That ‘rude’ person may just be an Aspie – seeing the world a little differently.


[1] Brenda Smith Myles, The Hidden Curriculum:  Practical Solutions for Understanding Unstated Rules in Social Situations (Autism Asperger Publishing Co., 2004), p. 1.

[2] Stephen M. Shore

Little Comedian

14 Sep

“Mom, do you want to hear a construction joke?” asks my then 9-year-old Aspie.  “Sure!” I say indulgently.  “Hmmm….I’m still working on it.” he says, with perfect deadpan delivery.  I pause a moment, waiting… and then burst out laughing!  I never saw that one coming….very funny!

Shortly after figuring out Greg’s diagnosis, I read that among the many challenges faced by Aspie’s, being too literal and social deficiencies are typical.  After giving these issues some thought, I decided to implement a Joke of the Day program.  My objectives were three-fold:  1) Send a little ‘love note’ for my son to find during his school day; 2) Use jokes to encourage him to think ‘outside the box’ and not see only the literal interpretation; and 3) Give him a tool to grease the wheels of social interaction with his peers.

So I went about pulling together all sorts of cute, simple, kid-appropriate jokes.  I typed them up, and then printed them out on slips of paper. (I made 2 copies, because I decided to include my older son in on the project too.  My daughter couldn’t read yet… much to her chagrin!)  Then, each morning I took one joke slip each, folded it up and put it into their lunch boxes.  Gregory and Daniel often wanted to check out the joke ahead of time, but I always made them wait until snack or lunchtime…building the anticipation, just like any great raconteur!  I suggested that after they read the joke themselves, they should try it out on their classmates.  And later over the dinner table, I would ask one of the boys to tell us the Joke of the Day.  This meant that they got to practice their joke telling skills and we could then explain it, if the ‘funny’ aspect wasn’t clear to their literal minds.  “Ohhhhh…I GET it!”

It started out a little slow, but within a couple of weeks, my boys were clamoring to see what the next Joke of the Day was.  As hoped, Greg started to tell the joke during snack to the kids around his desk.  I guess the laughs started getting attention, because before long, snack time found Gregory standing in front of his 3rd grade classroom, clearing his throat and waiting for quiet (luckily the teacher was supportive!)  It became part of the daily snack ritual for Greg to tell a joke to the entire class – to mutual groans or giggles – and the kids started asking him for it.   This was all great, until I forgot to include a joke one morning….doh!  (Greg gave me a firm ‘talking to’ that afternoon, let me tell you!)  Apparently, the class was very disappointed until Greg saved the day by resurrecting some ‘old material’ (thank goodness for his fabulous memory!)   He was able to offer his classmates their daily chuckle, in spite of my failing!

At the playground after school, I would smile to myself when I would hear one kid telling another kid my Joke of the Day!  Sometimes the joke didn’t quite make the translation….sort of like that old “Telephone Game”, but it did show my plan was working.  One mother even told me that her child was upset that she didn’t get a Joke of the Day in her lunchbox too!  Clearly we were on to something…

What I hadn’t anticipated was how well Greg took to it….he is a natural joke teller (who knew?)  His timing and delivery are spot on, and he frequently incorporates different voices, accents or inflections to add to the comedic value.  He is really very funny.  My little comedian was born! 

Greg doesn’t rely on my meager offerings anymore.  Now, he reads joke books all the time, gathering his own material, in order to regale his classmates and family members with impromptu ‘stand up’ on a daily basis.  He loves making people laugh and has gained a bit of fame and status among his peers for his comedic prowess.  Gregory has also expanded his repertoire to include not just jokes, but funny stories and tv show scenarios too (along with all the applicable voices, of course!)   These days, some boys actually vie to sit with him at lunch, because as the kids tell their mothers (who in turn tell me), “He is so funny!”

I’m thrilled that my informal ‘curriculum’ has proven so successful.  It has enabled Greg to expand his mindset to see alternate interpretations to a phrase or situation.  It has enabled him to lighten up and not take himself (or life!) too seriously.  It has laid a ground work for successful social interaction and it has given him a source of success and self-esteem.  Objectives met!

So with that, I’ll leave you with today’s Joke of the Day:  Did you hear the one about the clown fish?  Or is it a mollusk?  Oh darn….I forget…   Oh well, as my husband will tell you, I am the worst joke teller ever –  I’d best leave the funnies to my little comedian!

P.S.  If you would like a copy of my jokes to start a Joke of the Day program of your own, please let me know….I’m happy to share!  They are corny, but effective!

Going Public

7 Sep

Have you ever seen the guy who proposes to his girl in front of thousands via the Jumbo-tron at the sports stadium?  Or the family who willing allows cameras into their home to film the good, the bad and the ugly of their daily lives for a reality tv show?  These types of things hold a morbid fascination for me….why, on earth, would anyone want to DO that????  Why do people willingly expose their private, personal moments to the world?  I just don’t get it….     

As I first contemplated starting this blog (at the instigation of my husband Barry – see first post), I struggled with sharing very personal information about my family with the world at large.  I just couldn’t make our lives a reality show for the internet!   I knew that Barry was fine with sharing details, because he already had his own blog going (Houldsworth’s Random Ramblings.)  And while I am never exactly keen on giving out my personal experiences, I decided I was willing to share in the hope of helping another family.  But still, I didn’t quite feel comfortable with ‘exposing’ Gregory in the same way…it is his life, after all.    

Unsure about whether or not to proceed, I drafted the first post to see if I could even pull something like this blog off.  I used initials instead of our names to camouflage our identities and didn’t mention anything that might be used to specifically identify us…, but the story failed to ‘move’ – we came across as too anonymous.  Not pleased with the progress of the draft, I abandoned it on my computer screen and left to take care of some beckoning chore or child.  When I returned to my desk, I was surprised to find Gregory sitting in my chair, avidly scanning the draft of the first post [A is for Aspergers, B is for Blog].  “What IS this?” he asked, bemused.  My heart sank as I struggled with how best to handle this tricky situation.     

Then I remembered my mantra that “knowledge is power’, and decided to be upfront about what I was considering doing.  Following on in the mode we’d previously established, I once again shared information with Gregory and allowed him to have a say when things impacted him.  I told him about blogs, comparing them to one of his favorite tv shows.  “This is like what Carly does on her web show iCarly, but in written form.”  (He totally got that…)  Then I told him about my blog specifically.  I said it was about him, and our experiences with AS, and that we were hoping to help other families in a similar situation.  Hesitantly, I asked, “What do you think of the idea?”    

To my surprise, he smiled broadly and said, “Great!”  Then I asked him if I should use his real name, use initials or make up another pseudonym.   Gregory instantly stated that I should use his real name, “of course!”  He is not ashamed of his condition and is in fact, proud of how far he has come…so why not use our real names?    

Gregory Speaking at "Shining the Light on Autism" Conference

 

I guess I shouldn’t have been surprised. Unlike me, Greg has no qualms about ‘stardom’.   He loves the limelight and is a true ham at heart.  For example, last spring the program director of his Asperger’s Social Skills Therapy group approached us to see if he would be willing to be one of the panelists at an upcoming autism awareness conference.  Greg was over-the-moon, “Yes!  I would LOVE to!”  And he did a fantastic job, speaking in front of a large audience, answering questions and even ad libbing a joke!  Greg was the youngest panelist presenting that night, but you would never know it….he handled it like a pro!  He was open about his issues, forthcoming with his opinions and enjoyed sharing his experiences.    

And last year during a school assembly focused on tolerant acceptance of differences, the presenter was talking about the upcoming “Buddy Walk” in support of Down Syndrome.  At Q&A time, Gregory waited his turn, then proudly got up in front of the entire school and announced, “I have a syndrome too.  It’s called Asperger’s Syndrome.”  And then he smiled with satisfaction as the kids in the audience applauded with warmth and the adults looked at one another with tears in their eyes.      

Anyway, the rest is history, as they say.  With Greg’s enthusiastic ‘go ahead’, I put aside my misgivings and started the blog, using our real names, and laid it out there for all the world to see.  Each week I invite Greg to read my post before it goes out.  He has a phenomenal memory and can remember many of the quoted conversations verbatim, so he is a great resource.   I am happy to solicit Greg’s input, but most importantly, I want to make sure he feels comfortable with what I am writing.  In truth, this blog has become a joint effort by the two of us….it is ‘our story.’    

Some of the things I’ve written have been news to him too; opening his eyes to a few behind-the-scene aspects of our story.  For example, after reading my second post [Date Night Diagnosis], Gregory exclaimed with wonder, “Wow….I had a really bad case of AS when I was little, didn’t I?”   I concurred and then highlighted how much he has accomplished since then…He beamed with pride (and so did I!)    

But I still worry about exposing him too much.  After all, this blog goes out on Facebook, Twitter, forums and email, etc.  (Jumbo-Tron anyone???)  At some point, some of his peers will read all about his most personal ups and downs.  Will he be OK with that?  Does he really understand the magnitude and implications of what he is agreeing to?    

So a few weeks ago, I shared with him my blog statistics as they stood at that point.  I showed him a graph which displayed how many people viewed my pages each day and then I pointed out the total number of views, wondering how he would feel.  “You mean, 380 moms have read these stories” he asked in amazement?  I nodded.   “And they told their kids about me” he questioned?   I responded that, “Yes, I’m sure some of them have.”  He smiled and nodded, “We’re helping a lot of kids!”     

Once again, Gregory’s openness and acceptance just floored me.  In his mind, sharing his story means spreading understanding… ever expanding his support circle of acceptance.  That has certainly been the case to date, so maybe Gregory does know best!    

I’ve read a great book, School Success for Kids with Asperger’s Syndrome by Stephan M. Silverman and Rich Weinfeld.  It promotes educating other students about AS and about the child’s unique strengths and challenges.     

By educating classmates and schoolmates about the challenges of the individual child, a climate of understanding and support can be cultivated…  At older ages, the student with Asperger’s may self-advocate, as she helps educate her classmates about her own strengths, challenges, and needs.     

With that in mind, we’ll continue with the blog – working together on ‘our story’.  Future posts will feature Gregory, highlighting his strengths and special talents.  There might even be a post by ‘The Man’ himself and I hope you all come to see what a wonderful, open, extra-ordinary human being he is…  Oh…and BTW – does anyone have the number for that reality tv show producer???  😀

Back-to-School Basics

31 Aug

OK, I’m a nerd….I’ll admit it.  I’m one of those kids who loved school, adored books and even enjoyed a challenging homework assignment!  (Can’t you just see that big “L” on my forehead???)  For me as a child, the end of summer brought a mix of feelings.  On one hand, I adored the long, lazy, unstructured days spent playing with my friends.  On the other hand, the siren song of the new school year enticed me…all those new supplies, new school clothes, new books, new teacher and treasures of knowledge – vast potential awaiting me.   Even today, although I won’t be heading off to school myself in September, I feel that nostalgic excitement building.  Instead, I live vicariously through my children – planning, dreaming, imagining all the promise ahead for them.

But for Gregory, now heading into 5th grade, September brings with it, not excitement and anticipation, but dread and anxiety. Typically, Gregory has had a very difficult time adjusting to each new school year.  The new teacher, new room, new schedule, new class work – all requiring simultaneous adaptation – has often proven too much for him to cope with.  He would have melt-downs during school, followed by full-blown tantrums at home.  At school, it would be shredded projects, head-banging and crying jags.  At home we experienced slamming doors, projectile toys and even running away.  Obviously Greg’s limited and over-taxed coping mechanisms were insufficient to meet the burdens being placed upon them.

Over the years, we’ve learned a few ‘tricks’ that have helped his school year transitions. And while Greg’s transition into 4th grade was not without episodes, it was by far the smoothest to date.  I’m hoping that by applying some of the strategies that we’ve developed, this fall will be even better!

With that in mind, I wanted to share some of the tactics that we’ve employed previously with good results:

1.  Select the ‘right’ teacher.

The personality and teaching style of the teacher can have dramatic impact on the student.  While no one type of teacher is ‘right’ for every student, there most probably is a ‘right’ teacher for each child.

In Gregory’s case, the type of teacher that has been most positive is one who is nurturing, but has good control and structure within the class.  He/she is knowledgeable about Asperger’s Syndrome (and Greg’s need in particular), but maintains high expectations for success and achievement – both academically and socially.  And perhaps most importantly, Greg’s ideal teacher must maintain a calm, accepting, tolerant classroom, where the students support one another.

To help make sure your child gets the appropriate teacher assignment, start a dialogue with the guidance councilor, principal and current teacher the spring prior.  Discuss the types of teaching qualities to which your child responds best.  Include teacher assignment in the annual IEP meeting.  While our school administration will not necessarily make commitments or talk ‘specifics’ about teachers, the open discussion at least puts everyone on the same page about the needs of your child.  And face it, if your child transitions well and has fewer disruptive episodes, everyone benefits.

2.  Maintain skills over summer months.

Gregory is a perfectionist and finds it very stressful when he can’t do something or when he gets answers wrong.  To help combat this anxiety, I have Gregory (all three of my kids, actually) read nightly and do two workbook pages every weekday during the summer break.  They are free to read anything they would like, but I’ve utilized the Summer Bridge Activities workbook series by Michele D. Van Leeuwen for a several years now.  The material varies each day, but includes math, reading, writing, language and science over the course of the summer.  Since the work is based on the previous year’s curriculum, all the material is review, which makes the tasks fairly simple and the enables the child to feel successful.  And most importantly, this practice keeps the material fresh in the child’s mind, ready for the new school year.

3.  Meet teacher before school starts.

Last year for the first time, I arranged for Gregory and me to visit the school the week before school started.  It enabled us to meet his new teacher, see his new classroom (including which seat was his), see a list of other kids in his class, look through his new books, etc.  We included the guidance councilor in the meeting and took this opportunity to discuss some of Greg’s challenges and strategies.  The school was calm and quiet and Greg could stroll around at his leisure, taking it all in at his own pace.  He loved the experience and became more excited for the first day of school.  And when the first day arrived, Greg was already an ‘expert’ about his new class, entering with confidence instead of anxiety.

4.  Build positive excitement – but not too much!

Knowing how stressed Gregory can get about the new school year, I am careful to not talk about it too much ahead of time.  I might mention it in a round-about way, saying something like, “Look how much you’ve grown.  I can see you are ready for 5th grade.” I’ll also mention in passing the particular kids who will be in his class and maybe even some of the things he’ll be learning and doing (for example, the 5th graders put on a musical at the end of the year.)  I want Gregory to know that the new year is approaching (so as not to catch him off-guard) and that he has a lot to look forward to, but I don’t want to build it up too much.

5.  Maintain close communication with the teacher.

Since so much with Gregory is helping him manage his moods and emotions, during the first few critical weeks of school, I have almost daily communication with the teacher.  I will email the teacher to let her know if something at school that day was difficult or stressful for Gregory, so that she can head-off an issue the following day.  If he has a rough night or morning at home, I will also alert the teacher, so that she knows to handle him with kid gloves…at least until she senses his mood.

6.  Hold off on extra-curricular activities.

Knowing that Gregory’s senses and coping mechanisms are worked over-capacity at the start of the school year, I’ve learned not to have him start any other new activities after school for at least 6 weeks or so….and that includes play dates!  He needs the after school time to decompress from the stress of the day without any added pressures or performance expectations.  In fact, I usually encourage him to have some down-time (such as riding his bike, swinging or jumping on the trampoline) before even attempting homework.  In that mode, I also try to minimize any weekend activities or commitments during September to provide maximum down-time.

7.  Define safe havens at school and at home.

Even with the best laid plans and sensitive accommodations, Gregory will sometimes ‘lose it’.  His emotions will get too big for him to manage and he’ll have a melt-down.  We’ve arranged with the school, teacher and guidance councilor for a specific place to go when he feels the need to escape.  In our case, Greg’s ‘safe haven’ is the guidance councilor’s office, where hopefully she will also be available to aid him in calming down.  At home, Greg’s bedroom is his safe haven to escape from the intrusions of family life with two noisy siblings.  We’ve also equipped his room with a beanbag chair which provides added sensory input to help him calm down.

So, as September fast approaches, I can feel my excitement brewing.  I’m avidly anticipating back-to-school shopping for shoes, clothes and supplies.  I’m drooling over all the brochures that arrive in the mail daily, announcing great sales and a myriad of after-school activities.   As I drive past our local elementary school (at least 5 times every day!), I look over fondly, imaging my kids in their new classrooms, absorbing all those ‘treasures of knowledge’ that I so enjoyed.  And hopefully, with some planning and foresight, Gregory’s transition into 5th grade will be smooth sailing, and someday he’ll be able to think back upon his back-to-school days with fond nostalgia too.

 

Do you have any strategies that have helped ease your child’s back-to-school transitions?  If so, I’d love to hear them!

 

A+ for the Teacher

24 Aug

From my years as a Project Manager, I’ve learned the importance of teamwork for a successful outcome.  When I first faced the unknown obstacle of Gregory’s Asperger Syndrome, I tackled it the best way I knew how – with my ‘business analysis’ hat on to determine the best way to help Gregory improve his behaviors and coping skills.  I researched as much as I could and then turned to recruiting key players within the school to become part of our ‘team’ to address these issues.

We were very fortunate that Gregory had a wonderfully experienced, nurturing woman as his 3rd grade teacher.  Mrs. A had been working hard to help him, relying on her instincts, since we didn’t yet understand the issues.  She was in fact, one of the people who drove my search for answers, after she made an insightful comment about Greg, “I think there is more going on here [than Tourettes].  I have never seen a child be so hard on himself.”  Mrs. A would be the first prospective ‘team member’ that I approached.

The Monday after my fateful “Date Night Diagnosis” [see previous post], I presented Mrs. A with my suspected discovery.  She wasn’t very familiar with AS, but she was thrilled that we had found a direction.  She immediately wanted to know what she could do to help, so I provided her with a small booklet entitledSimple Strategies That Work by Brenda Myles.  I had my first team member on board… We were off and running!

In the weeks that followed, we initiated the IEP [Individual Education Plan] process and shared the news with other key personnel in the school.  Our team was shaping up nicely, and as more and more information was shared with the various team members, strategies to support Greg within the school environment started to take shape.

Once Greg’s condition was officially diagnosed by the neurologist, I confirmed this with Mrs. A.  Then she asked, “How would you feel about sharing Greg’s condition with the rest of the class?” I was shocked!!!  Why should I further ‘label’ my son, who was already struggling with his peers?  “I think it might help them understand him” she continued.  I wasn’t comfortable with the idea, but I said that we would think about it.

I pondered the question…  On one hand, I am a proponent of ‘knowledge is power’, so surely it would be positive to share the information?  And my business experience further supported the idea of sharing information across the team…but were Greg’s classmates really part of his ‘team’?   Would this just give them ammunition with which to torment him?

I tried to put my mothering instincts aside to think more objectively:  If my child has already been unofficially labeled as ‘weird’ or ‘different’ by other kids, teachers and adults, then an official ‘label’ can only help matters.  Knowledge of his diagnosis might help deflate negative judgments and promote acceptance of his problematic behaviors.  I felt sure that Greg’s classmates had already unofficially ‘labeled’ him in their minds, so sharing the official diagnosis would be positive, right?

Gregory was already aware of his diagnosis and was a key player on his ‘team’, so following my belief in sharing information, I decided to discuss the question with him directly.  I told Greg what Mrs. A had suggested and why, and then asked how he would feel about that.  He thought about it for a minute and then slowly answered, “I think that would be OK.”  I asked him if he was sure that he wanted the other kids to know about his AS and he said, “Yes, they might understand me better.” Alright….if he was comfortable with sharing the news, then maybe I should be too….

I then asked him if he wanted to be in the classroom while Mrs. A talked to the kids.  As an alternative, Mrs. A had offered that he could help out the Kindergarten class with a project if he preferred.  Greg was excited by that prospect and opted to help the Kindergarteners.  So, we had a plan…and Gregory had surprised me once again by his open acceptance of his condition.

The day came when Mrs. A spoke to the class very sensitively about Gregory’s syndrome.  (I was a nervous wreck all day!)  She started by talking about how each of us is different and that some people have certain problems, like allergies or poor eyesight.  (She used herself as an example, because she has both!)  Mrs. A then described, at a very high level, some of the things that are difficult for Greg, and how the class might be able help him during those difficult periods.   The kids not only listened, but were amazingly positive.  Eager to show their new comprehension, they exclaimed, “Oh…THAT’S why he does” such and such behavior…  And then the class brainstormed ideas on how they might support Gregory during his tough times.

I have to admit that it was a bit of a stretch for me to extend the ‘sharing of information’ to kids, but I accepted Mrs. A’s suggestion and followed Greg’s lead.  After school Mrs. A assured me that it had gone even better than she expected.  “The kids were SO accepting!” she marveled proudly.  I’m sure the manner in which she presented had much to do with their response, and I give her full credit for its success.

And a complete success it has turned out to be!  Now, instead of looking at Greg oddly as he retreats under his desk during a period of stress, some of his classmates will quietly kneel down to his level and try to calm him down.  When they see him starting to get upset about something, they tell him, “Don’t worry Greg.  It’s OK.”  When he is in tears about some disappointment or frustration, the kids (both boys and girls!) check on him and try to cheer him up.

I witnessed it myself one day….and was awed by the kindness and sensitivity of his peers:  I happened to be at the school playground for pick-up a few minutes early that day.  Greg’s gym class was working on the Presidential Fitness module, and had just done the mile run.  Greg, not particularly physically strong or coordinated, felt that he had ‘failed’ the test by not achieving the desired speed.  He was sitting on the playground sobbing – feeling like a loser.  One by one, a boy or a girl from his class approached him to see if he was okay and/or to try to cheer him up. “Greg, are you ok?” asked one concerned boy. “Don’t worry Greg, I didn’t make it either.” soothed one girl.  And then the ‘pièce de résistance’, a girl who had previously teased and tormented Gregory repeatedly, approached him.  I held my breath, afraid of how she might ridicule him and plunge him deeper into his emotional abyss.  But no, she kindly said, “It’s OK Greg.  You’ll do better next time.”  I was dumbstruck….  Tears welled up in my eyes, grateful for the kindness of these children, who had been lead to understanding and acceptance through the guidance of their inspiring teacher.  Thank you Mrs. A – You’re the MVP of our team!

 

No one has yet fully realized the wealth of sympathy, kindness, and generosity hidden in the soul of a child.  The effort of every true education should be to unlock that treasure.               – Emma Golmam

 

 

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