Help! IEP Time!

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:

• Know your rights, understand the law and learn the process.  The school has a set of rules and obligations that it must abide by.  It is vital that you know what those are, so that you can work within them and make them work for your child.  We live in New Jersey, so I will reference those documents, but each state will have its own similar version.  You may request these documents through your school, or you may view them online.
  • New Jersey Administrative Code, Title 6A Chapter 14, Special Education
  • New Jersey Department of Education, Parental Rights in Special Education (PRISE)

• 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…)

• Read books and websites. Learn as much as you can about your child’s specific issues and the various therapies that are available.  Learn the process, lingo and abbreviations used within Special Education and the Autism community (or other disability), so that you may speak knowledgeably like the professionals.  A good resource for Special Education in general is:  Parents’ Complete Special Education Guide – Tips, Techniques and Materials for Helping Your Child Succeed in School and Life, by Roger Pierangelo, Ph.D. and Robert Jacoby.  Some good Autism/Aspergers websites include:  ASPEN, Autism Support Network, and WrongPlanet, but many others exist as well.

• 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….

Related Articles

• Set an Education Course for a Child with Special Needs (blogs.forbes.com)
• IEP Meetings – Another round (ourordinaryday.wordpress.com)
• Hitting the Road – Will the IEP Come With Us? (everydayhealth.com)
• Tough Transition to Middle School (everydayhealth.com)
• The Never Ending Resource List For IEP’s (downsyndromenwfl.wordpress.com)

Embrace the Chaos

Recently my daughter spent a few days with a friend, visiting her grandmother.  Aside from hoping that the girls were behaving themselves and having a great time, what came to mind was the realization of how calm and quiet our house was without her….The two boys were still at home, so there was still action going on, but everything was relatively peaceful and laid back.  The boys played together well and were happy to engage in family activities, like bowling or movies without any disagreement.  Experience has taught me that you could have removed any one of the three children, and the result would have been the same – calm, peaceful, playful familial ‘bliss’.  There is just something about that mystical number three that brings out the crazies in kids.

Any parent with a young child in the house will tell you that, at times, chaos reigns supreme.  Multiply the number of children by three (or more!) and chaos is a daily occurrence.  Complicate that equation with two boys being on ‘The Spectrum’ and life starts to get very interesting… supreme chaos is practically the status quo.  Welcome to Chez Moi!

Before having kids of my own, I would shake my head in quiet disapproval as I observed mothers ‘giving in’ to their child’s public tantrums, or screaming at their child to ‘just behave’.   I would pull my nose up at dirty, snot-nosed kids, running willy-nilly in mismatched outfits, as their mothers looked away in quiet desperation.  Don’t these women have any pride, I would think to myself?  Can’t they manage their children? Not I….oh never!  I, of course, planned to have beautifully dressed, well-mannered, cooperative, bright, adorable little cherubs….someday….

Fast-forward some years, and I awoke to find myself over-run by three screaming, whining, fighting, hellions who are constantly demanding something – food, attention, toys, vindication, you name it….and leaving a trail of destruction in their wakes.  What had happened to my grand plan of perfect little angels?  I learned the hard way – never say never!

Don’t get me wrong, I adore our three kids and given the option, wouldn’t send any of them back (well, not today anyway…)  But, they do tend to play havoc with my carefully laid plans, try my patience with their ‘deafness’ and test my parenting skills with their challenges.

Truth be told, I’m not your laid-back type of person to begin with (my husband is nodding his head vigorously in agreement!), so dealing with this level of noise, chaos and disruption is like fingernails down a blackboard.  I struggle hard to pick my battles and as the popular book recommends – not sweat the small stuff….easier said than done!

Finally accepting that chaos is a natural part of our family life, I’ve recently adopted a new motto – “Embrace the Chaos”.  Rather than constantly fighting to tame the chaos, I now try to find the joy within it:

• Instead of sighing over the trail of art supplies left behind by my daughter, I try to envision her future as a budding Picasso.
• Instead of groaning over the books and papers strewn across my son’s room, I try to focus on the fact that he is an avid reader.
• Instead of moaning over that fact that my kids complain about the dinner I just slaved over, I try to appreciate that we are all together and have food to eat.

And of course, in the midst of it all, I also try to seize the rare moment of ‘zen’ for a quiet moment for myself, reading in the sun room.

For Gregory in particular, chaos can be extremely difficult to deal with.  As with most Aspies, sensory overload from the sights, sounds and smells of our daily family life – music, video games, shouting, vacuuming, etc. – can become very stressful. Add to that, an older brother who loves to tackle, touch and tease and a whiny, persistent little sister invading your private domain, and poor Gregory has his hands full trying to hold himself together.

But as stressful as family life can be for Gregory, I am convinced that our familial chaos has  benefited him as well.  It has forced Greg to build his threshold of sensory stimulation and increase his tolerance for frustration.  Family life has helped Gregory to adapt, as he is forced out of his comfort zone of quiet control into the fray of close social interactions and constantly changing situations.  Family disruption has taught Greg sharing and negotiation tactics, as well as the skills of reading social cues necessary to achieve a desired end.  In short, although he frequently retreats to the quiet solitude of his bedroom to decompress from too much ‘togetherness’, the ‘invasions’ of family life have also forced Greg to rise above of his Aspie tendencies and interact with life as it comes…maybe not on his terms, but on terms he can now cope with much better…

So, when chaos reigns supreme in your home, just stand back, take a deep breath, relax and ‘embrace the chaos’! The positive results might just surprise you too!  (And I’m willing to bet that Picasso’s house wasn’t exactly immaculate either…)

Related Articles

• How Rude! (asdhelp.wordpress.com)
• Embracing the chaos – build a fort in the living room (if you can find the living room) (dadventure.ca)

What We Have Here … Is a Failure to Communicate

“Don’t be smart, Mister!” I scolded my then 8 year old Aspie son, after he back-talked me about something or other.  He looked at me, wide-eyed with confused uneasiness.  He knew from my tone of voice that I was angry with him, but he didn’t understand my words… (Don’t be smart?  Isn’t being smart a good thing?  What is wrong???)

As I watched his facial expression retreat from disrespect to confusion to worry, I realized that we were experiencing a breakdown in communication.  I stopped and considered my impulsive reprimand…  Ah ha!!!- Gregory was interpreting my words literally!  At face value, the idiomatic phrase “Don’t be smart” went contrary to my usual promptings, so naturally it didn’t make sense to him.

Like most Aspies, Gregory is naturally very literal and needs to be explicitly taught to recognize when an idiom or other figurative language is being used.  Once I explained that “Don’t be smart” is a figure of speech that means ‘Don’t be fresh’ (hmmm…ok, that’s another figure of speech….) or ‘Don’t be disrespectful’, then he understood.  My message got through  and he apologized for being rude.  My mission was accomplished with that particular communication ‘battle’, but I realized that we had yet to win the ‘war’…

The Hidden Curriculum – Part III – Figurative Language

As discussed in my blog series The Hidden Curriculum, Aspies and others with social-cognitive learning disabilities, can have great difficulty decoding hidden curriculum rules.  Figurative speech, and most especially idioms, fall into this category.

A life-long avid reader, I adore imaginative figurative language and admire writers who can incorporate it effectively into their writing to add color and interest.  Well written prose, with the help of ingenious figures of speech, can take a rather mundane concept and turn it into a memorable, thought-provoking ‘pearl of wisdom’.

As you may recall from your grade school English classes, figurative language contains images and comparisons.  The speaker describes something through the use of unusual comparisons, for effect, interest, and to make things clearer. Appealing to the imagination, figurative language provides new ways of looking at the world – adding richness and depth to our communication.

To refresh your memory, here are some common types of figurative language that we use on a daily basis:  (See how well you remember… I had to look a few of these up!)

• Imagery
• Simile
• Metaphor
• Personification
• Alliteration
• Onomatopoeia
• Hyperbole
• Cliché
• Idioms

As fun, creative and widely used as it is, figurative speech is not intended to be interpreted in a literal sense. And herein lays the problem….  It is common for young kids to take things too literally, but when this misunderstanding continues with age, it can create significant comprehension and therefore social issues.

Figures of Speech Game

To help Gregory develop his sense of figurative language, I created a “Figures of Speech” game that we played each night at dinner time.  I printed out hundreds of common idioms, such as “Quit horsing around”, “Roll with the punches”, and “Bite my head off”.  (An entire chapter is devoted to examples of Figurative Speech and Idioms in Brenda Myles’s wonderful book, The Hidden Curriculum, which formed the basis of my series on the subject.)  As we all sat around the table, one of the kids would read aloud a figure of speech from a little slip of paper and then everyone would try to guess what it meant.  Then I told them what it meant figuratively, including, whenever possible, how it originated.  We giggled about how silly it sounded when interpreted literally, so they could begin to recognize these types of phrases in daily life.

During the game, we would review sayings that we had already covered, to reinforce the learning process.  This time around, the kids usually guessed/expressed the figurative meaning correctly.  We also had lots of fun having everyone come up with other idioms, either from things they had heard or from their imagination.  We all enjoyed many laughs and the lessons got through, because nowadays, when Gregory hears an idiom on tv or reads one in a book, he’ll turn and inform me, “That’s a figure of speech!”

I am Tongue Tied

During a school book fair where I was volunteering, I came across a wonderfully silly kid’s book called  Even More Parts by Tedd Arnold (of Fly Guy fame.) Through the use of very cute cartoons, the author introduces all sorts of common idioms dealing with body parts – from head to toe!  Just imagine the literal illustrations of someone saying “I lost my head”, “I keep changing my mind” or “I am tongue tied” – hysterical!  I bought it immediately – what a fun way to ‘get’ figurative language!    I presented it to Gregory, who was instantly mesmerized by the cartoon pictures of a man who ‘sang his heart out’ (his red, beating heart falling onto the floor), and the boy who ‘went to pieces’ (his snap-together body parts strewn all along the sidewalk).  The book was a huge hit with all three of the kids, who giggled at the absurdity of the literal interpretations to these well known idioms, so I subsequently bought the complete set (Parts and More Parts!)  Kudos Mr. Arnold!

*  *  *  *  *  *  *

Today, as a result of our ‘Figures of Speech’ game, the Parts books and lots of general reading, Gregory has a well-developed sense of figurative language.  Even when he doesn’t understand exactly what an idiom means, he recognizes that the phase is not meant literally.  But even better yet, Gregory uses figures of speech himself – to add richness and creativity to his own speech and writing!

So, the next time your child becomes concerned for your safety because you are “just going to jump in the shower….”, you might want to consider a couple of these techniques too.  Comprehending idioms and figurative speech can pose real difficulties for those on the Spectrum who see the world through literal ‘glasses’, but with a little work and a lot of silliness, our kids don’t have to stay ‘out in left field’…

Related Articles

• The Hidden Curriculum (asdhelp.wordpress.com)
• How Rude! (asdhelp.wordpress.com)

Going Public

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.  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

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 5^th 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 4^th 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 5^th 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 5^th 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 5^th 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

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 3^rd 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 entitled:  Simple 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

 

 

Date Night Diagnosis

I’ll start by saying that I’m no expert on autism and that there are some really great resources out there – on the internet, in book stores, at seminars and colleges, etc. with insights and knowledge provided by experienced and credentialed professionals and documented studies.  With 20-20 hindsight, I wish that I had known to investigate these sources a whole lot earlier in my son’s life.  It would have saved us thousands of dollars, multitudes of questions, years of anguish…

In any case, I didn’t know any better, so when my previously loving 2-year-old son Gregory started ‘rejecting’ me and waking up screaming in terror/anger/frustration in the middle of the night, I was lost for an explanation.  I tried to reach him, to calm him, but he shut me out; he wouldn’t let me touch him.  I did what my mother-instinct told me to do…Night after night, I grabbed hold of him and held him firmly against me (fighting, screaming and kicking the whole time), talking quietly into his ear until eventually he ran out of steam and quieted.  Of course, Greg couldn’t tell me what was wrong, and even when he eventually lay his tear-stained face back down on his pillow, he wouldn’t acknowledge me.

I cried myself to sleep too…my poor baby.  We had never experienced anything like this with his older brother, Daniel.  What was so wrong?  What could I do for him?  Why was he in so much pain? 

Having just given birth to our third child, our lovely girl Sarah, I suspected that Gregory might be reacting to her arrival with jealousy.  Perhaps he felt replaced or betrayed by my attention to this new loud, smelly ‘thing’.  But if so, what could I do about it?  So I started reading books about sibling rivalry.

First, we tried to make sure that Greg received lots of one-on-one attention – from both his parents.  Then, I tried talking to him about the problem and trying to give him names for the feelings that he was experiencing – encouraging him to express himself.  But he still wouldn’t or couldn’t say.  Then, we tried to involve him in helping us care for his new baby sister, but he had absolutely no interest.  To him, she didn’t exist:  when he drew pictures of his family, it was always just Mom, Dad, Daniel and Gregory – no Sarah!  When someone talked to him about Baby Sarah, he just turned and walked away. 

And Greg became increasingly solitary, smiling rarely, interacting less.  His body-language changed, to where he appeared very tense, with his shoulders hiked up to his earlobes, poised on his tip-toes, with his hands clenched tightly.  If someone or thing surprised him (even with a slight touch on the shoulder), he reacted aggressively, as if trying to protect himself from attack.  And that is indeed, how he appeared – as if he was about to be accosted at any time – always on high alert.  It saddened me to see my little boy so tense and nervous, unable to relax – even in his sleep.

When those efforts proved ineffective, I spoke with the pediatrician.  Now, don’t get me wrong, we LOVE our pediatrician, and one of the reasons for this is that he doesn’t over-react to nervous mother worries.  So when I explained my concerns, the doctor reviewed Greg’s growth (which was off the charts in both height and weight ever since birth), performed the usual physical and developmental assessments and determined that it was ‘just a phase’ – “He’s doing fine.”  I tried to be reassured by this knowledgeable professional’s words, but my instincts told me it was more than ‘just a phase’.

So, life went on, but Gregory was not ‘just fine’.  We continued to struggle with our quirky boy, trying to mold his good behaviors and discipline his bad ones.  I attempted play dates, in the vain hopes of helping him develop friendships.  I signed him up for activities, hoping that Greg would ‘find himself’.  I took him to a pediatric neurologist and was told, “No, he doesn’t have autism – He makes good eye contact.  He has Tourette’s Syndrome.”  We even had him wear orthotic boots to bed at night for two years, on the recommendation of an orthopedic physician, to cure the presumed tight tendons that were causing him to toe-walk years past the toddler stage. While all well-intentioned, none of it worked.  Gregory continued to be an unhappy, tense, withdrawn boy.

Once Greg hit Kindergarten, all hell broke loose.  Our older son, Daniel, had transitioned well into elementary school.  And the PreK teachers had said that Gregory was ready for Kindergarten, so we were totally blind-sided when things went so wrong right from the start.  On the second day of Kindergarten, I received a phone call from the teacher that Greg had been sent to the principal….WHAT????  I had NEVER been sent to the principal in my entire life!  My little guy didn’t even know that being sent to the principal was a bad thing!  What was going on???  Unfortunately, it went downhill from there…

In hindsight, it was not just Gregory’s behaviors that were at fault.  The teacher didn’t handle things as well as she might have either, and being the professional, I believe the greater responsibility lay with her.  In any case, the two of them did not mesh well at all, and it became a very rocky relationship, to the point where Greg didn’t want to go to school anymore.  His verbal and motor tics increased dramatically in response to the stress.  He felt his teacher’s disapproval, our disappointment, and his own frustration at being unable to do things ‘right’.  It was a daily struggle, with weekly meetings, and ‘talks’ with Gregory.  Luckily for him, his teacher went out on maternity leave in January and he and the new teacher got along much better.  I don’t know what specifically changed, but the new, young teacher must have just ‘got’ Greg and accepted him in all his quirky behaviors.  He still had melt-downs at school from time to time, but overall, he did much better and we were relieved that he might be moving out of that ‘stage’.

First and Second grades progressed slightly better, primarily because the teachers were wonderfully accepting of Gregory’s odd behaviors and needs.  The first half of each school year was fraught with melt-downs and running-away episodes, but by January, Greg would settle in and be more comfortable for the rest of the school year.  And we would think, yeah! He might be moving out of that ‘stage’…  until the next school year began and the cycle repeated itself.

In Third Grade, the year started off with the usual poor transition, with melt-down episodes of hiding under desks, running away from school, tearing up school work, and disappearing into stairwells.  Gregory was a desperately unhappy child, saying that “No one understands me.” And “I’m not like other kids.”  His tics were rampant, he was barely sleeping at night and he was always by himself.  I knew that something had to be done, but still didn’t know in which direction to turn.  This time, I made an appointment with the Head of Pediatric Development at St. Joseph’s Children’s Hospital…I couldn’t get the appointment for another 6 months, but I needed to do something and didn’t know where else to go.

And then, the ‘Date Night Epiphany’ happened.  For a number of years, my husband and I would schedule Date Nights every few weeks, for just the two of us to go out together and talk.  (This has served us well throughout the years – I highly recommend it!)  In any case, that particular night, Barry had to take a lengthy phone call from his boss in the middle of our Date Night, just as we were finishing dinner.  Knowing how much I love book stores, he knew that I could happily browse for hours and therefore not get annoyed by the interrupted Date Night, freeing him to take the call without guilt. 

So, to Barnes and Noble we went, where I was drawn to the section on Mental Health, still trying to put my finger on Gregory’s strange set of issues.  Bi-Polar – no; ADHD – no; Oppositional-Defiant Disorder – no.    And then the epiphany:  I picked up the next book on the shelf – Tony Attwood’s The Complete Guide to Asperger’s Syndrome[1].  Although I had a vague notion of what autism was, I had only heard the term Asperger’s Syndrome a few times and had no clue what it was.  So I turned to the page listing AS symptoms – and there he was, in all his quirky glory!!!!  I couldn’t believe my eyes…out of the 20 symptoms listed, Gregory matched up with almost all of them.  I was overjoyed – not that he had AS, but that now I had a direction to go….understanding and hopefully treatment was finally on its way!    I grabbed every book I could find on the subject and virtually ran to find Barry (having just completed his phone call, luckily) to present him with the joyous news!  Our son has Aspergers!!!

All that Friday night and the rest of the weekend, I read…and read….and read.  Light bulbs were going off in my head constantly as Gregory’s behaviors started to fall into place and make sense.   I hugged him and told him how much I loved him – for the first time with an understanding of all that he had been struggling with.  My brave boy had tackled so much on his own, trying his best to cope in his own way, to circumstances and situations that were so difficult for him…Sometimes sadly, even when the well-meaning actions of his parents and teachers exacerbated the problems for him.

But now, things would be different.  I knew what we were dealing with and I was ready to educate myself about my ‘opponent’.   I still went ahead and eventually visited with a Pediatric Neurologist for an official, unbiased medical diagnosis, but I was already convinced that this was it.  Time to strap on the armor….  Look out world – I’m a Mama with a Mission!

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[1] Tony Attwood, The Complete Guide to Asperger’s Syndrome (Jessica Kingsley Publishers, 2007).

A is for Aspergers, B is for Blog

Welcome to Aspergers:  A Mom’s Eye View!

So, what is this blog and why am I writing it?  Simply because, this is my life – struggles and triumphs – and if someone else might benefit from my experiences, good and bad, then I’m happy to share. That is my wish.

I am the mother of three great kids, aged 7-12, who are mostly the joys of my life and sometimes the bane of my existence!  My now 10-year-old son, Gregory, was finally diagnosed with Asperger’s Syndrome when he was 8.  He is bright, talented and funny, but he has significant challenges as well.  This blog deals with how this neurological disorder has impacted him, me, and our entire family.  It will discuss our trials and errors, and even mis-directions as we’ve attempted over the years to figure out and then ‘treat’ his problems.

I have no particular background in this field (with degrees in finance and marketing, of all things!), but over the past two years I have become an ‘accidental expert’ out of necessity.  I am ’that mother’  who is reading, taking classes, attending seminars and learning as much as possible about autism, in all its forms and symptoms, and various therapies.  My primary goal has been to help my son overcome (and/or cope with) his challenges and reach his full potential for a happy, enriching life.

However, my wonderful husband – that funny, insightful, geeky guy, who supports all my crazy obsessions with merely a raised eyebrow – convinced me of a secondary goal.  He is the impetus behind this blog.  Barry is ‘all things techy’ and has been dragging me (kicking and screaming) into current technologies and social networking trends ever since we met 15 years ago.  He has twisted my arm once again, insisting that all the knowledge that I’ve been collecting might be worthwhile sharing with others in our situation, and that a blog would be a great way to get the word out.  And so, Aspergers:  A Mom’s Eye View is born!

Although normally very reticent about myself, I’m a firm believer in the old adage that ‘knowledge is power’, so the more we can share with and support one another, the better for us all!  With that in mind, I welcome any comments, suggestions and anecdotes from all of you….bring ‘em on!  And in the meantime, happy reading!