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….

Embrace the Chaos

24 Feb

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 Houldsworth!

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…)

What We Have Here … Is a Failure to Communicate

25 Jan

“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!)

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’…

Catching ZZZs

24 Nov

I don’t know about you, but I am an absolute bear if I don’t get enough sleep, or even worse – if my sleep is interrupted – Beware!  My husband learned this the hard way early on in our relationship, when I lashed out at him like some evil, snaked-tressed Medusa after he woke me up one too many times during a long, late-night car ride to Washington, DC.  I shall never forget the look of astonishment, fear and horror on his face as he witnessed his beloved turn into a raging lunatic in the night.  (As we were still just dating at that point, I’m surprised our couple-hood lived to see the light of day!  It is truly a testament to his equanimity…)

It’s no surprise really…We are bombarded daily with articles and news reports about how vital sleep is for mood, as well as for health, learning and development.  So, we all agree that sleep is a great thing, but still many of us are unable to achieve that minimum daily requirement of zzz’s.  And children are no exception.

Right from birth, my son Gregory had difficulty settling himself.  Whereas his older brother Daniel had slept for four hour stretches his very first day home from the hospital, as a newborn Gregory woke up and needed to be cuddled, soothed and/or fed every hour.  It was exhausting (and helped produce some repeat performances of Medusa-on-the Rampage, BTW), but eventually we got him to sleep for as much as three hours at a time.

When Greg was 2 ½, we moved him out of the nursery, into his own room and into a ‘Big Boy Bed’.  (His sister Sarah was on the way and we needed the Baby’s Room for her….)  Gregory loved his new room, decorated with cars and trucks, but the transition was not an easy one for him.  (and in hindsight, we could have handled the change much better…live and learn….)  In any case, Greg continued to have great difficulty settling down for the night.  He would happily get ready for bed and eagerly pick out a book for Mom or Dad to read to him.  But after being tucked in and kissed good night, he would toss and turn for hours.

When Barry and I would head to bed several hours later, Gregory was often still awake, lying in his “Big Boy Bed” muttering to himself, unable to let go of the world and fall into peaceful slumber.  And when he did eventually sleep, it was anything but peaceful, fraught with restless dreams and late-night stirrings. He would awake crying frequently and I would repeatedly have to go in to settle him.

How do I know all this?  Well, Gregory’s room is right next to the Master Bedroom.  And that adorable red, bead-board “Big Boy Bed” that I had purchased to go with his charmingly decorated new bedroom, squeaked and creaked with – every – single – movement!    No, I am not exaggerating.  (Boy, did I have buyer’s remorse over that purchase!)  I am a very light sleeper, and I heard Greg’s bed ‘musical’ constantly through the night – night, after night, after night…

We tried many things to try to improve his comfort and thereby hopefully his sleep.  We put up side rails; we added a night-light; we surrounded him with pillows and stuffed animals; we put on sleepy ‘mood’ music; we tried a wave sound machine; we read ‘sleepy’ books to him; we even had his big brother sleep with him…All to no avail.  He continued to be a very restless, problem sleeper – and time went on…

Melatonin Supplementation

Shortly after figuring out that Gregory has Asperger’s Syndrome, I read that many people with AS suffer with these same sleep issues.  Apparently, children on the spectrum typically experience circadian rhythm dysfunction and abnormally low levels of melatonin.

I began to do research and came across a study in the Journal of Clinical Sleep Medicine on the use of the natural hormone melatonin to improve sleep of children with autism.  This study was a 4-week rigorously scientific trial, where either 3 mg of melatonin or a placebo was given to 18 children with ASD.  The study supported the efficacy of melatonin treatment for sleep problems, with minimal, if any, side effects.  Now this sounded promising!

I did additional research, OK’d it with our pediatrician and then set out on my own subjective clinical trial.  I decided to start with 1 mg of melatonin (as opposed to the 3 mg in the study), to try to find the minimal effective dosage.  I also decided to include my older son Daniel in the test, because due to his ADHD he too, has difficulty falling to sleep.  (Unlike Gregory however, Daniel sleeps like a log once he finally does fall asleep.  One time a carpenter was banging away, installing crown molding right outside his bedroom, and Daniel slept right through it all….)

At bedtime, I gave both boys 1 mg of melatonin and then observed the results.  On the very first night – success!  Greg and Dan both fell asleep within about 20 minutes, which was a dramatic improvement.  But even better, Gregory experienced a much more restful sleep.  He didn’t toss and turn, or wake up nearly as often throughout the night.  The next morning, both boys woke up normally, and did not show any signs of grogginess or other ill effects.  I was ecstatic!  Add one to the arsenal of sleep aids!

Massage Therapy

About this same time, I was speaking with a behavioral therapist who uses both music and massage therapies in working with autistic children.  She showed me some basic massage techniques to help reduce stress. (For example:  Press the palm of your one hand firmly against the person’s chest, while your other hand slowly and firmly slides down his back, from between the shoulders blades to the waist.)   We tested it out on Gregory…He loved it!  It seemed to calm and relax him, and I could actually see his shoulders dropping away from ear lobes as he de-stressed.  We began using therapeutic massage anytime Gregory started getting upset or overwhelmed and it significantly helped him to regroup and manage his behavior.

Seeing how well massage worked during stressful times, I decided to try it at Greg’s bedtime as well.  As part of his nightly routine, I would give him a back rub – using long strokes and firm pressure (not too hard or too light, which were both uncomfortable to him.)  As I massaged, we would talk a bit about his day and what the plans were for tomorrow.  Stroking his back, I would quietly ask him if he could feel all that TLC (which I had to define for him as ‘Tender Loving Care’) going from me to him.  He loved it – and so did I!  Best of all, it worked to improve his sleep.  As the tension melted away from his body through my loving touch, Gregory was able to go to sleep and stay asleep so much easier.  Add another trick to the arsenal!

Today, that bedtime massage is a well-loved ritual that we do each night – with all three of my kids!  Greg will actually come and ask me for his ‘special massage’ and it has become a very special bonding time.

Although I didn’t use a scientific approach or control variables in my ‘studies’, I believe that melatonin and massage both have had very favorable results in improving Gregory’s sleep patterns.  Together, they have helped him fall asleep more quickly and stay asleep longer, enabling him to enjoy a more restful, recuperative night.

After a few months, I stopped giving the melatonin at bedtime, to test the supplement’s true impact….and to my surprise, the benefits remained!  Somehow the improved sleep patterns of the previous few months had retrained Greg’s mind/body to improve his circadian rhythm function.  He had learned how to settle himself and was now relaxed enough to stay asleep.  I couldn’t be happier with the results and these days, we only rely on melatonin periodically, such as during travel or when sleep eludes him for some reason.  Even on an ad hoc basis, melatonin continues to work its wonders.

As a result of his improved sleep, Greg’s daytime moods and resiliency have improved dramatically too.  He is less stressed and is able to cope much better with the world around him.  And I’m happy to say – so am I!  I too, am sleeping better and Mrs. Medusa rarely makes an appearance these days – at least not due to lack of sleep!  :-)

 

Here’s a link to another recent study supporting the use of melatonin for children with autism:   http://www.autismspeaks.org/science/science-news/more-evidence-melatonin-eases-autism-associated-insomnia?utm_source=social-media&utm_medium=E-speaks&utm_campaign=121611

 

The Boy Behind the Blog

2 Nov

Whoever said parenting would be easy?  I think it’s one of the hardest jobs there is…and the pay really stinks!  But in spite of all the hard work, emotional angst and exasperated frustration, we parents do receive certain rewards:  Such as when our child offers up an unprompted hug, kiss, or an “I love you, Mom!”  When our child achieves a new milestone, skill or success.   Or simply when our child displays, by word or by deed, what a truly great person he/she is.  At times like those, our parental hearts just overflow with pride and love for our offspring – wiping away all memory (at least for the moment!) of the recent ‘blow up’, when we would gladly have sold them into slavery…  Forgetaboutit!!!  All is right with the world – for the moment!  ;-)

Today, I am happy to share with you one of those moments – an opportunity for my son to show ‘what he is made of’ – and I get to look on, smiling proudly.  This post is dedicated to Gregory, the boy behind the blog…my muse for these scribblings and my inspiration for reaching out to other families with Aspergers in their midst.

In the video above, I interview Gregory – about this blog, about himself, about life with Aspergers and his advice for other kids with AS.  He may look fairly comfortable here, but two years ago you would never have recognized him.  He was a different child – a ball of stress, frustration and sadness, unable to be understood and very lonely.  Today, after coming to grips with the disorder and participating in various programs and therapies, Gregory is happy, out-going and really quite eloquent.

I provided Greg with the questions ahead of time, so that he could think about his answers, but these words are entirely his own.  And I couldn’t have said it better myself!  May you all see what a great person he is!

Signed,

One Proud Mama

Yes Wii Can!

26 Oct

As a self-proclaimed Luddite, technology is generally NOT my favorite thing.  It certainly isn’t the first place I turn for a solution.  My husband on the other hand, is my polar opposite.  He lives for geeky things, being an early, if not bleeding edge, adopter of the latest and greatest techy gadgets to surface. I am embarrassed to say that during our early dating days, I sent him into nirvana, not as you might imagine, but by giving him the newest geeky toy – one of the very first GPS navigators!  (This was back in the day when only military people had GPS!)  Needless to say, I had no clue what I was buying – but he was ecstatic!  :-)

Suffice it to say, I am in the minority when it comes to technological interest, but our home is filled to the brim with geekiness.  We may have only five people in the family, but we have 6 computers, PDAs, iPods, GPSs, gaming systems, tvs….and the list goes on…and on…  “Screen time” (defined as free time to play on anything with a screen, such as tv, video game, computer, etc.) is the most highly sought reward for my kids….who could happily spend hours each day glued to a screen (barely pausing for a potty break), if allowed.  (In reality, we limit ‘screen time’ to a maximum of one hour per day…and only after all chores and homework are complete.)   I stand alone in my disdain for electronics, succumbing to their power only at the insistence of my tech-evangelizing hubby.

So, I am both surprised and humbled to stand before you today as a technology convert and declare that the Wii game system has proven to be a huge boon to my Aspie son.  Yes, let me repeat that – I love the Wii!!!

From a very young age Gregory has been reluctant to attempt new things due to his fear of failure and/or the unknown.  (I have come to learn that this trait is quite common among Aspies, but of course, I didn’t know that then….)  Frequently, I would have to work so hard to coax him to try something I thought he would enjoy, whether it was a new piece of playground equipment, a new food, or a new activity, sport or game.  Many times, I would just have to force him into the new experience, grabbing hold of him as we both zoomed down a slide or ran through a sprinkler.  Sometimes his first response was positive, but mostly, after being forced to try something new, he would retreat to ponder the experience by himself.

Greg’s resistance was particularly strong when it came to physical things, like playing sports, sledding or riding a bike.  It seemed a bit like a chicken and egg dilemma…was he resistant because of poor balance, stamina and coordination, or did he suffer from these things because he was resistant to participate actively?  I couldn’t say, but assuming practice would help improve his skills and thus his attitude, we persisted in coaxing/forcing Gregory to keep trying all the great American past times…soccer, t-ball, basketball, swimming, tennis, etc….  These attempts had rather dismal results, to say the least, and Gregory continued to resist.

And then, the Wii entered our lives.  The kids received the Wii game system a few years ago.  Surprisingly, we weren’t among the early adopters in this case, because I had resisted bringing another ‘screen’ into the house to dominate our children’s attention.  But Barry’s geeky proclivities eventually won out.  The Wii appeared on Christmas morning to joyous acclaim and was played by one or another screen-obsessed person for the next 14 hours!  (sic).

For the most part, Gregory would stand back, closely observing the others as they maneuvered through the new interactive games, such as tennis, bowling, baseball, etc.  He wouldn’t actually participate himself, but was avidly participating vicariously, as he watched and cheered on his siblings.  When we finally talked Greg into trying one or another of the games, he would get frustrated and quit at the very first sign of ‘failure’.  We tried to encourage him, saying it would take some practice to learn, but he was not willing to persevere.

So, I was more than a little surprised when, a few days after Christmas while no one else was around, I saw Gregory playing baseball on the Wii.  “Hey, Greg…I’m glad to see you’re trying the Wii!” I said.  He looked slightly abashed, mumbled something and promptly exited the game.  I apologized for interrupting him and tried to talk him into continuing, but he refused.  What a shame…I was sorry I had mentioned anything…

So the next time I ‘caught’ him playing, I held my tongue – I had learned my lesson!  I pretended not to notice him there and carried on with my business.  He was in deep concentration, trying to learn the rules and the technique of Wii Baseball – on his own terms.  This MO continued over the next few days, with Gregory exiting abruptly, anytime someone commented on his game or had the audacity to try to join him in play.  Eventually though, he gained enough confidence to allow others to watch and even join his game.  He was still happiest playing on his own, but he came to tolerate when he had to share the game with his siblings.

And then, the most amazing thing happened…One day out of the blue, Gregory asked his Dad to come outside and play catch with him!!!  We were stunned, because for years Greg had refused to learn to throw and catch a ball.  When Barry was teaching Greg’s older brother Daniel to throw, catch and hit a baseball (without must finesse unfortunately, being a Brit who confused cricket with baseball :-) ), he tried repeatedly, but unsuccessfully to involve Greg in the training sessions.  Gregory wanted no part of baseball.  He stubbornly refused to even try to learn, I believe once again, due to fear of failure.

But the Wii, that wonderful bit of technology, had enabled Gregory to gain an understanding of baseball in a fun, non-threatening way…a way that Greg could relate to using characters (Miis) that he created, but were not himThese characters could fail, so that Gregory wouldn’t have to!  He used these Miis to show him the ropes, develop his skills and demonstrate how fun the sport could be, until eventually Greg was ready to try it himself in real life.

So that long-awaited day arrived and Daddy was only too eager to play catch with his son.  In spite of his virtual skills developed over weeks of playing Wii Sports, Gregory still struggled to learn the actual skills.  But the important thing is that he was at last willing to try….and willing to fail.  Today he is quite proficient at playing catch, although his form is rather unorthodox.  He’ll probably never be a great ball player, but he has developed new-found physical skills and emotional resilience as a result of this experience.

Greg has followed a similar road to learning the basics of bowling and tennis too.  He started playing these games in the virtual world of Wii and subsequently was willing to try them in the real world.  Better yet, as a result of these learning experiences, Greg has dramatically improved his willingness to try new things – of all sorts, from foods to books to activities…  That debilitating fear of failure or the unknown doesn’t seem to hold him back quite so much anymore.  And while he may never be a ‘thrill-seeking, rush-headlong-into-new-experiences’ type of person, today he is, at least, open to the possibilities.  All thanks to the Wii and its virtual world where learning by trial and error can be fun.

Technology – it’s a wonderful thing…sometimes….  (Just don’t tell my husband I said so!  :-) )

The number one benefit of information technology is that it empowers people to do what they want to do. It lets people be creative. It lets people be productive. It lets people learn things they didn’t think they could learn before, and so in a sense it is all about potential.

- Steve Ballmer

On His Own?

12 Oct

When you look at your 10 year old child and dream of his future, do those dreams include having him live with you forever?  Mine sure didn’t…

Last fall, I attended a certificate program in Special Education and Autism at the local community college.  Gregory had been diagnosed with Aspergers Syndrome (AS) the year before and I was still actively trying to learn as much as I could about the disorder and treatments.  The course required that each of us interview an Autism Service Provider and prepare a presentation about their services. 

Gregory had been attending a therapeutic social skills group for boys his age at a nearby mental health center for about 6 months.  I knew that this center also serviced adults on the spectrum, so I opted to interview the director of the Adult Aspergers Services Group (who also happened to lead Greg’s AS group).  Happily, the director (Eve) was most willing to meet with me and discuss the services offered to adults on the spectrum.  So, I prepared my set of questions and set off for the interview, feeling upbeat and studious.

During our discussion, Eve informed me that this group (adults over 21, with AS, High-Functioning Autism or PDD-NOS) is very under-served, with some people having to travel over two hours to participate in a program because nothing closer is currently available.  Most of these individuals had not received any type of services as children and had been misdiagnosed, if diagnosed at all.  Due to their generally poor inter-personal skills, most of the group members are un[der]employed, still live with their elderly parents and have very few friends or spouses.  This clinic offers these individuals a variety of different programs, including counseling, college planning, workforce skills, personal/hygiene, life skills, social skills and recreation.

So think about this…  Most of the participants in Eve’s programs are college graduates and in many cases are highly intelligent.  But due to their quirky behaviors and inadequate social skills associated with Aspergers Syndrome, they are frequently unable to obtain and/or retain meaningful, gainful employment.  Since their employment is so limited, these individuals cannot afford to live independently.  In most cases, these highly intelligent, highly skilled individuals have no option but to live with parents in the bedrooms of their childhood.   OK, that’s not ideal you might think, but living with your parents isn’t all bad, right?

But what happens when their elderly parents become infirm or pass away?  These Aspies, unable to support themselves or function adequately within society, frequently fall under the auspices of the Division of Developmental Disabilities (DDD) and are put onto waiting lists to join a group home.  The DDD is set-up to provide a certain level of support (financial and otherwise) for adults who are developmentally unable to take care of themselves and live independently.

The problem comes with the rapidly growing backlog of people needing placement in group homes.  With 1 in 100 children currently being diagnosed with Autism (according to the Centers for Disease Control and Prevention), this is the fastest growing developmental disability in the US.  Without adequate treatment, these children will grow into adults who require a lifetime of continuing services from the DDD.  Although there is already a significant shortage of DDD group homes and other appropriate facilities, there is currently no plan in place to meet the needs of this rapidly expanding population.

As alarming as those facts sounded, they didn’t touch me directly until Eve casually said, “So, you should put Gregory onto the waiting list right now.  Then, by the time he needs it, there might be a facility available for him.”  I blanched and struggled to understand what she was telling me.  I must have misunderstood.  “Do you mean that you think Gregory will never be able to live independently?” I asked in shock…  That couldn’t really be what she meant – She worked with Gregory – She knew how bright and talented he was.   Eve didn’t answer directly.  She looked at me sadly and nodded.

And with that, my world shifted on its axis.  Confused and reeling from the news, I couldn’t think straight.  “No!!!” I wanted to shout, “That can’t be true!”  But I didn’t.  I am sure my face and body language conveyed my distress, but I tried to calmly gather my papers, thank her for her time and exit as quickly as possible.  Going down in the elevator, I shook my head in denial as tears welled up in my eyes.  I held myself together until I got to my car…and then the floodgates of despair opened.

Suddenly, I was seeing the future in a different light.  The possibilities were not bright, wide open and endless as I had once thought.  Gone were my hopes of Gregory making his own way in the world – finding success and fulfillment through his career of choice.  Gone were my hopes of holding a grandchild in my arms while Gregory and his wonderful future wife look on proudly.  Gone were my dreams of globe-trotting to exotic ports with my husband during our empty-nest years.  Instead the future looked dark and bleak and hopeless.

I cried and cried, trying to get my head around this future that I had never imagined.  Of course, I was willing to do whatever needed to be done to help and support my son, but would he really need all that?  Yes, Greg has his quirks and struggles with some things, but overall he is doing well in school, managing things at home and progressing well.  Surely, he would one day be able to live on his own…

But as I thought about why Eve made her recommendation, I came to see some of the unspoken factors that may have lead her to that conclusion.  As one example, Aspies are frequently lax in their personal habits, because they don’t value the benefits the way an Neurotypical (NT) brain does.  An Aspie doesn’t see well through the eyes of an NT (and vice versa!) and therefore may not fully appreciate that it is not pleasant for that NT to see or smell an unkempt person, much less work or socialize with one.

Yes, Greg is perfectly capable of bathing himself and putting on clean clothes, but if I weren’t there to guide him, would he see the need to do these things on his own?  Perhaps not – perhaps he would go unwashed and wear the same clothes for days.  Yes, at some point in the future Greg could probably shop for groceries and cook a meal, but would he value the need to eat a balance diet and make the effort that that requires?  Perhaps not – perhaps he would eat his favorite take-out pizza 7 nights a week.  Yes, Greg could make his bed, vacuum his room and do the dishes, but on his own, would he choose to do so???  And the list goes on…finances, home maintenance, health, fitness, socializing…  In society, we do necessary ‘chores’ on a daily basis – even if we don’t feel like it.  We do these tasks, because we NTs are aware of the societal benefits of them and the consequences of not doing them.  An Aspie may not value the benefits the same way, and may not even be aware of the consequences that society will impose for not doing so…not a recipe for success.

It dawned on me that, even if Greg could eventually obtain stable, gainful employment and earn enough for his own place, it may not be sufficient for his needs.  For although Gregory would most likely be capable of doing all the tasks required of living independently, without guidance he may not choose to do those tasks.  And that is where an on-going NT influence (whether it be me, a roommate, a wife, or the Resident Assistant at a group home) would be beneficial.  And a group home, filled with fellow Aspies, might be a very positive, nurturing experience.  It could be a very comfortable, supportive environment within which Gregory could thrive – understood and appreciated by those around him.

So eventually I came around to appreciating Eve’s recommendation for what it was….good advice.  We don’t know what the future holds for Greg.  And while I sincerely hope that he will eventually lead a fulfilling, happy life on his own, I can see that some on-going beneficent NT oversight will most likely be necessary.  His father and I will not be around forever, so it is prudent for us to plan for his future.  As much as my heart resists it, we should sign Greg up with the DDD, so that at least he has that fall-back option should he need or want it.   Sigh….

To be honest, having come to that decision months ago, I still haven’t taken any action.  That future seems so remote and Greg’s progress has been very impressive over the last two years…  Besides, AS is becoming almost cool these days, with documentaries and box office movies being made about it and Aspie characters starring on almost every hit tv series.  As the general public becomes more aware of AS and the unique strengths that many of these individuals possess, future employers may very well be seeking out Aspies with lucrative, adapted job opportunities, instead of shying away from them in fear, misunderstanding and/or censure.

In a wonderful book by Temple Grandin and Kate Duffy – Developing Talents:  Careers for Individuals with Asperger Syndrome and High-Functioning Autism, the authors suggest ways to identify and tap into the potential talents of those on the spectrum.  This sage, practical book discusses all aspects of the search for suitable vocations – providing invaluable career advice to and from real people with AS.  So taking all this to heart, I am not abandoning my hopes and dreams for Gregory’s future.  Sure, he might take a little bit longer to ‘launch’ and he may benefit from on-going supports, but that’s OK.  Working together, we will do our best to prepare him for an independent, successful life – one on his terms, of his choosing.  That is my dream.

*  *  *  *  *  *

In spite of society’s growing awareness and acceptance, it remains an urgent priority to address the needs of the expanding autistic population within our social services across the country.  Stop-gap measures must be put in place immediately to address the huge gap in current unfulfilled needs within these organizations.  But equally critically, a strategic plan must be developed to address the anticipated needs of the future.  Society cannot just put its collective ‘head in the sand’ and hope these problems will go away.  We owe it to ourselves;  We owe it to our children…

Let’s make it happen!    – Joanne

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! ;-)

Fix Autism?

28 Sep

If we could fix Autism, would we?  I recently attended a conference where a geneticist presented some very exciting advances in current autism research – leading to just that possibility. 

Dr. Alexander Kolevzon, from the Seaver Autism Center at Mount Sinai School of Medicine, stated that scientists have identified the gene responsible for Fragile X Syndrome (FXS) – a rare genetic variation which accounts for about 2% of autistic cases[1].  Fragile X is tied to a single gene mutation whereas, many other Autism Spectrum Disorder (ASD) types may be more complex and based upon a combination of genes acting together.  Dr. Kolevzon proceeded to say that researchers are currently able to identify the genetic causes for up to 40% of all autism cases.  (Autism, defined here, includes all ASD, including Autism Disorder, Aspergers, PDD-NOS, etc. ) 

Within the autism research community, autism is generally accepted to be a genetic condition with environmental risk factors.  This genetic predisposition to autism, coupled in some cases with one or more environmental factors (yet to be determined…perhaps maternal factors, infections or toxins) at key points in the growth of the fetus and young child, may lead to the development of autism.  So, there is a long way to go before all the causes are understood, but identifying the underlying genetic components is a huge step forward.

The Fragile X gene (FMR1) is a DNA mutation which in effect, turns off the gene.  “Normally protein products of FMR1 act to dampen the synthesis of proteins at synapses…  Without the brake provided by FMR protein, synaptic protein synthesis is excessive and connections [within the brain] do not develop normally.”  Researchers are now developing medication to restore “normal synaptic protein syntheses and improve function.”[2] 

Based on this ground-breaking research, Fragile X medication is currently undergoing trials in humans with promising results.  Medication and/or genetic therapies for other types of autism will presumably follow thereafter…

How very exciting – I was thrilled to hear about the progress!!!  I choked up, thinking about some of those parents who now have hope that within the foreseeable future, they might be able to ‘reach’ into their severely autistic child’s locked-in world and perhaps communicate with him or her for the first time.  And how amazing it would be for the child (by then probably an adult) to finally be able to break out of his/her shell and interact with the world at long last.  I can’t imagine anything more thrilling.

But then I started to think more deeply about the implications.  Upon initial hearing, one might think, “Fabulous!  Let’s ‘fix’ things!”  However, aside from the significant moral and ethical considerations of gene therapy (which I won’t go into here…), these autistic individuals would be dramatically changed at a very core level – they may lose or change the very essence of themselves – potentially resulting in a radically different personality, skill set and perspective on the world.  Would they want that?  It might be great for the parents to finally have a neurotypical child, but given the choice, would the autistic person choose this for him/herself?  Would that even be a good thing – for the individual?  For the family?  For society?   

Would I want Gregory to undergo a similar therapy to correct his Aspergers?  Sure, he might become more ‘normal’ in his behaviors.  And yes, life would most certainly be less confusing and difficult for him, but he wouldn’t be ‘Gregory’ any more.  Now, I’m sure the NT version of Gregory would still be a great kid, but I would miss my lovable, quirky, funny, amazing Aspie son.  No, I decided quickly, I would NOT want Gregory to undergo gene therapy, if and when it becomes available.  (Having said that, the choice would ultimately be his to make.  I would respect his decision, but I would mourn the loss of ‘my’ Gregory if he opted to try it.)

So, there is no ‘right’ or easy answer and each situation would need to be evaluated on its own merits.  For parents of severely autistic children – those who are non-verbal and not able to function within society to any significant degree, perhaps genetic therapy would provide significant benefits.  But for individuals on the high-functioning end of the autism spectrum, this genetic ‘fix’ may not be the best choice.  It is an intensely personal decision and the trade-offs, risks and rewards of gene therapy would need to be carefully weighed.

Many Aspies don’t feel that their Aspergers is a disability at all, but more of a difference – if not an outright strength!  (See Wrong Planet.com)  Entire forums are dedicated to accepting and appreciating the Aspie brain – for all its unique powers and perspectives – not trying to FIX it!!!

Dr. Temple Grandin, the renowned autistic author and animal scientist, believes that we, as a society actually NEED Aspies among us.  These are the people who are able to look at the world ‘differently’ and come up with new solutions to problems.  They are the individuals whose analytical, detail-oriented, precise talents and single-mindedness can hyper-focus on specific problems in order to research and solve complex technical or scientific issues.  In fact, it has been said that most of the technology (e.g. Bit Torrent) we enjoy (or hate, depending on your perspective!) today would not exist, were it not for AS.

“Some of our world’s finest minds, inventions, art and ideas belong to people with autistic traits.”[3] Among those fine minds that are thought to have had AS are:  Albert Einstein, Vincent Van Gogh, Gregor Mendel, Thomas Jefferson, Carl Sagan, Wolfgang Amadeus Mozart, H.G. Wells, Charles Darwin and Isaac Newton – very good company indeed!

In spite of having significant challenges with social skills, physical coordination, emotional regulation and sensory integration, Gregory is a remarkable, bright and talented person.  He is potentially one of those ‘great minds’ of the future.  He has many strengths and ‘uniquenesses’ that I would be loath to ‘normalize’ by fixing his Aspergers.  And Gregory too, is quite happy with his AS.  Yes, he acknowledges that it does make certain things more difficult, but it makes some things easier too.  He has accepted his condition with grace and dignity – focusing on the strengths it provides.  We love Gregory the way he is – in all his quirky glory….and so does he.

So, after weeks of focusing this blog on the challenges facing Gregory and our family, today I celebrate the many strengths and unique perspectives of my Aspie.  I wouldn’t change him for the world…


[1] Alexander Kolevzon, MD, “Advances in the Genetics of Autism:  Implications for Treatment”, 1st Annual JCC Rockland & Parent Support Network Conference:  Current Autism Research:  Practical Strategies for parents and Professionals – Meeting the Needs of Children and Youth on the Spectrum, (West Nyack, NY, 2009).

[2]Clinical Tests Begin on Medication to Correct Fragile X Defect,” US Department of Health and Human Services, National Institutes of Health, November 2, 2009.

[3] Fitzgerald & O’Brien, 2007 

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???  :-D

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

 

 

To Tell the Truth

17 Aug

 “Greg, the doctor has discovered that your brain does not work the same as most people’s…”  That is how the discussion with my 8-year-old started…

There is much debate about the age at which your child is ready to learn of his diagnosis.  After all, you want your child to have good self-esteem and a carefree childhood; why worry him already?  Since every situation is unique, there is no ‘correct’ answer to this valid concern.  But I believe that everyone manages better when they understand what they are dealing with – and that goes for children as well as adults…

If your child is old enough to be aware that “he is not like other kids”, then you are not protecting him from pain by keeping him in the dark about his disability.  You are in fact, increasing his sense of isolation and poor self-esteem by negating his feelings and not acknowledging his difficulties.

For years, my son Gregory was dragged back and forth to various types of doctors, undergoing numerous tests and evaluations, in an effort to identify why he was struggling so much socially, emotionally and physically.  I tried to be vague and upbeat in response to his questions about why he had to go see another doctor, but I never specifically identified to him where the areas of concern lay.  I didn’t want him to label himself, or to feel like he was somehow ‘wrong’ ….surely ignorance is bliss, right?

But as time passed, Gregory began to tell me that some kids didn’t like him or thought that he was ‘weird’.  He would tell me that kids didn’t want to sit next to him at school because of his ‘noises’ [tics].  And one day, when he was 8 years old, he announced to me, with a sort of thoughtful self-revelation,  “You know Mom, I’m not like other kids.”  Pressed for more, he responded, “We just don’t think the same.”  But my heart nearly broke when Gregory, beside himself with self-condemnation and frustration, sobbed uncontrollably, “Nobody understands me!   I just can’t….can’t….can’t help it!”

In fact, the kids (and perhaps teachers and other adults) had already unofficially ‘labeled’ Greg in their minds, based on his strange behaviors….I don’t blame them for this – his behaviors were definitely odd.  But more importantly, Greg had also already labeled himself as strange and different – an outcast – and he blamed himself for it.

So, when we finally confirmed the diagnosis of Asperger’s Syndrome with a pediatric neurologist, I decided to share the news.  I first shared the diagnosis, along with some educational material, with our family and a few close friends.  I didn’t know yet what AS might fully entail, but I wanted to help them better understand and accept Gregory.  I also knew that Barry and I could definitely use the emotional support of our relatives and friends!

After thinking long and hard about it, I also shared the news with Gregory.  Although he was still so young, based on the feelings of inadequacy and isolation that he had already expressed, I believed he would find the information  comforting, rather than disturbing.  I hoped he would be able to redefine himself from being ‘weird’ to being someone with AS.  So, I took him aside and calmly discussed his diagnosis in terms that I hoped he would understand and find reassuring:

“Gregory, you know how we’ve been taking you to lots of different doctors lately?  Well, Dr. SyTe has discovered that your brain does not work the same as most people’s.”  Greg looked shocked, but since I was calmly smiling, he was open to hearing more.  “That is good news and bad news,” I said.  “The good news is that one part of your brain is really, really smart.  The bad news is that the other part of your brain has some trouble, which is why you have difficulty managing your emotions and making friends sometimes.”  Gregory nodded his head, acknowledging these troubles.  “So,” I continued, “we need to work really hard to get the ‘smart’ part of your brain to ‘teach’ the other part of your brain the things it needs to learn.”  Then I asked him if was willing to work hard to help his brain and he enthusiastically answered, “Yes!” with a great big smile!  Phew!!!  I then presented him with a cute little book for kids, entitledCan I tell you about Asperger Syndrome? so he could learn more about the disorder.

To be perfectly clear here, most people do NOT have this discussion with their young kids.  I later learned that we are in a small minority of parents who inform their elementary-school-age child of his disability.  But I am convinced that it was the right thing to do for us.  Gregory handled the news very well, and I believe, was greatly relieved to find a logical explanation for what he was going through.  It validated his feelings and provided him exclusive membership in a special group of people.  And then, as I provided him with more information about the disorder and talked to him about some famous people who also have AS, he began to take it on, as almost a badge of honor.  Greg began to understand his strengths and challenges, and why they existed, and was therefore willing to accept that he needed to work to change his behaviors.  We no longer heard the distraught, “I can’t….can’t….can’t help it!” 

Coupled with our family’s growing understanding and acceptance of his issues, Greg’s knowledge of his condition allowed him to take control over himself, and gave him some ownership of his progress.  We would talk about his challenges (and strengths!) as a family, so that his siblings understood the issues and what we were trying to accomplish together.  And when we worked on social skills, and other topics at home, ALL the kids got into the act, and I feel that each of us benefited.  Greg is no longer stigmatized, but accepted, understood and valued, so that at least under his own roof, he has a safe place to be ‘just himself’.

Over the last two years, we have continued in this pattern of openness with Greg, his siblings, his peers and teachers, and as a happy result, his support circle of acceptance has expanded exponentially.  That acceptance, along with numerous programs, has enabled Gregory to grow into himself.  He is now relaxed and happy – most of the time!   He is a beautiful, bright, talented, funny 10-year-old boy.  And oh yeah, he also happens to have Aspergers Syndrome.


Date Night Diagnosis

10 Aug

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!


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

A is for Aspergers, B is for Blog

8 Aug

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!

Follow

Get every new post delivered to your Inbox.

Join 171 other followers

%d bloggers like this: