In Memory of Holidays Past…a Message to New “Autism Moms”

December 14th, 2009

Holidays have always been a time of great joy and great stress.  The joy of having a child experience the wonders of the season; the stress of meeting developmental milestones while battling strep, ear infections, the flu, recurrent meltdowns and night terrors.  Happily, most of Connor’s childhood illnesses have subsided, and so has the race for achieving developmental milestones.  In that spirit, I’d like to provide a holiday message to new ‘autism moms’ (especially those mothers with children under the age of five):

1. Christmas ornaments are educational tools.  At six months of age, my son still wasn’t turning over, so I placed him on his back and held a big shiny ornament about six inches above his face.  Connor has always loved anything that sparkled, and the ornament caught his eye immediately.  Holding the ornament aloft and moving it slowly from one side of his little body to another, he followed it with his eyes.  I took it further to one side until he had to turn his head to see it, and a little further until he turned his body, eventually flipping onto his side and onto his tummy.   Mission accomplished!

Ornaments can also be comforting. One of the most enduring household traditions that we started when Connor was four, was for him to hold an angel ornament while I sang a Christmas carol.  The angel ’sang’ along, which was another form of imaginative play.

2. The night time can be the right time for play.  Gosh, I’ll probably get flammed for saying this, but those late night hours were some of the sweetest, most tender times that my son and I have shared.  There was no one watching  us, no family member judging us, no educator or doctor evaluating us.  Connor and I just played, cuddled, tickled and had fun being ourselves. There were many times when my husband would stagger sleepily down the stairs to see what all the racket was about only to find Connor and I whooping it up under the Christmas tree, wrapped from head to toe  in paper and bows. Of course, we all had to nap the next day, but  with no distractions, Connor and I could work on what I was to learn was the important social skill of joint attention and educational play. 

3. Peace and Patience.  New autism moms might have a difficult time understanding this one.  I sure did.  If one thing doesn’t work, try something else. Or better yet, sometimes patience is the best approach…many a wise mom will say that children will learn a new task at their own pace, in their own time. Keep trying to equip them with the skills that they’ll need to become independent adults some day… and above all, tell your children how much you love them and accept them for the precious gifts that they are.

Happy holidays!!

ASD terminology: ‘autistic’ vs ‘individual with autism’

November 21st, 2009

What’s in a name?  Apparently, everything, if you are a person with an autism or Asperger’s Syndrome diagnosis.  At issue is whether or not to use ‘autistic’ as an adjective or to keep the traditional PeopleFirst language of an ‘individual with autism.’ The reasoning for both have great merit.

PeopleFirst fans would claim that a person would never call an individual with cancer a ‘cancerous’ person, so why wouldn’t the diagnosis always be listed last? Thus, a person with a cognitive disability or a person with a cold or a person with an autism spectrum disorder deserves the same respect by placing the name of the individual first.

To their credit, the neuro-diversitivists who prefer the term ‘autistic’ agree that PeopleFirst language is courteous and respectful for persons with significant disabilities. However, many neuro-diversitivists, particularly those with high-functioning autism or Asperger’s Syndrome, prefer the term ‘autistic’ because they believe that their differences are strengths, and are not related to a disorder. Further, they would like to see Asperger’s removed from the DSM-IV classifications for autism spectrum disorders, because of the societal stigma, misunderstanding and discrimination that is generated by the diagnosis.

On a personal level, my son doesn’t like to be called ‘autistic’ or ‘a child with autism,’ but he doesn’t mind using the term autism to explain his differences. My adult Asperger friends prefer the term autistic.  As a writer, an advocate, a friend and a mother, I’m stuck.  I want to respect everyone, and I care deeply about their feelings, but I’m not exactly sure what to do. PeopleFirst language can be unwieldy, so it is easier to use the adjective when writing, but for all the individuals who have worked their tails off to remove the R word from government organizations and to implement PeopleFirst language, I feel like a traitor for abandoning it.

Recently, I saw a wonderful brochure about people with disabilities finding ‘real jobs’ in our state.  The term ‘autism’ was never used.  Instead, the individual was described as having a ‘learning disability.’ I think the authors were on to something.  Perhaps when we talk about challenges, we could be much more specific, such as an individual with special sensory needs or speech or social delays.  (Or in my case, as I sit here with a sprained ankle, perhaps individuals with balance issues! ) Kudos to the state of Missouri Planning Council for Developmental Disabilities for  creating a humane, respectful and much more descriptive solution.

But more importantly, I think we need to do a much better job of  recognizing and celebrating an autistic person’s strengths.  Our kids, our friends, our colleagues and our relatives with autism diagnoses have abilities — attention to detail, memory, creativity, musical, artistic, mathematical and other skills — that are enviable, admirable and valuable to society.

Peer acceptance and autism

November 8th, 2009

Many moms go through a tipping point around the time their children reach elementary school. It is the dawning realization that, “It’s not about what I want. It’s about my child having a  life of self-determination and fulfillment based upon his own unique talents and preferences.” Slowly, we learn to accept our children for the wonderful people they are, and  not the ones we expect them to be from our own narrow set of experiences. For some of us, it can be a hard lesson to learn, and I’m still learning.

As an example, last year I felt the need to apologize to Connor because I bungled I prime opportunity to show my support for him. Instead, that support came from two of his classmates. These two very special people, Katie and Quentin, partnered with my son to make a new and frightening experience much more tolerable. In karate class, Katie never protested when Connor  kept touching her hair and trying to draw her into conversation during class exercises. When the instructor, a stranger, attempted to put a martial arts belt on him, Connor ran to the back of the gym and Quentin followed him to bring him back to the activities.

I, on the other hand, kept signalling Connor to  shh, don’t-do-that, pay-attention, stop-touching-her-hair and put-your-belt-on-right-now. Me bad. I should have picked a better time, a time when my son wasn’t so frightened.

As parents, we need to learn to expect kindness and courtesy from other children, and to trust in their value as peer mentors. What I found so wonderful about Katie and Quentin’s actions were that they were also true friends of Connor, just the way he was – autism and all. In the scary world where bullying is an all-too-frequent occurrence, it was a healthy reminder that most children are kind, considerate, and understand/accept our kiddos far more than we realize.

For grandparents, neighbors and extended family…How can you help? Bring dinner!

October 17th, 2009

My parents recently confessed that that they always wanted to help out with our son, but weren’t sure what to do.  They felt particularly helpless during the early years when Connor was newly diagnosed and we were still trying to find our way with Autism.  They are not alone. Many parents, neighbors and friends stand on the sidelines or walk on eggshells fearing that they will say or do the wrong thing.   If only these parents and friends knew how much we needed them during that difficult time (and how much we still need them now).  Maybe this  list of DO’s and DON’Ts will give them the guidelines and the confidence to step forward:

DO: Ask questions.  We won’t be offended.  We’d like to share what we know, and we’re just like any other parent — we want to brag about our children’s victories and commiserate about their setbacks.   If you don’t ask questions, chances are that we’ll assume that you either a) think we are overreacting and that our kids will ‘grow out of autism’ b) you don’t care or c) you think we aren’t doing enough to help our children (see below).

DON’T:  Judge.  Believe me, we question ourselves every step of the way.  Why did I do this?  Why didn’t I do that? What could I do better?  This mantra gets me through at least 100 sit-ups.

DO: Be respectful of our time.  Go see so-and-so and you need to read this  are typically not helpful unless they come from another mom or dad with a child on the spectrum or a professional, like an educator, doctor or attorney.  First of all, we probably have already read most of the generic literature, news and advice on autism. Secondly, you might’ve just sent us off on a wild goose chase to bond with someone we don’t care to know. I once spent three hours of time I didn’t have tracking down a therapist suggested by a well-meaning family member only to find out the ’therapist’ went out of business two years before.

DON’T: Under-estimate our children. Ever.  Or we will inflict bodily harm get really, really angry.

DO: Help us be vigilant.  Our kids can run faster than jackrabbits when eloping from sensory overload. Help us keep them safe from dashing into traffic, wandering away from home, falling into unsupervised swimming pools or talking to strangers.  Maybe then, we could trust you to watch them for just a little while while we grab a quick nap. (You wonder why we often won’t let our kids out of our sight…let me tell you, after finding my child tied to a chair during a mom’s day out program or witnessing his first seizure…well, I’m sure you get the picture.  Bear with us).

DO: Bring dinner!  It would be worth a call first to check and see if there are any dietary restrictions, but PLEASE bring dinner.  Just ring the doorbell and drop it off on the front porch with a nice note, kind of like those lovely church ladies do when someone gets back from the hospital.  The all-hands-on-deck time from 4:30 in the afternoon to bedtime is chaos.  Overly-tired children, cranky husbands, dogs that need walking and telemarketing calls from vendors who don’t check the do-not-call-lists make dinner time more like disaster time. So, please drop off dinner, send an encouraging email, or offer to run a few errands for us–and you’ll help more than you know!

A mom think tank for autism?

October 2nd, 2009

Tackling weighty  problems like autism causes, treatments, health care, education and employment is a big job, and thank goodness we have teams of scientists, legislators, economists and the entire autism community to help.  But in the meantime, I think we could use a mom think tank to weigh in  on issues related to the Everyday Parenting Challenges of Autism (EPCA).   

In theory, the EPCA think tank would have its own identity.  Maybe we’d even have our own flag.  And, we’d align ourselves with key sponsors, preferably those that specialize in skincare and designer handbags!  And we’d meet someplace interesting and have a big summit to brainstorm solutions to EPCA challenges. I’d want  topics to include things like:

 How to effectively let your spouse know how to contact you and where to find food while you are away.  It is not easy for the poor dear to forage for dinner while being a single parent to an over-stimulated child in full meltdown mode.  Posting this information on the refrigerator simply isn’t sufficient when reason and logic  leave the building.

Songs to sing over the phone while traveling to calm the aforementioned child-in-meltdown, thus giving the aforementioned spouse the time  to call, eat or sit down.  My favorite is TEENY, TINY Valentine, but it is losing its effectiveness, and I’ve had to resort to Fergie’s Fergalicious.  I could use some new material.

How not to get impatient when in a hurry, and a child refuses to walk faster than a snail on Valium. I hear mothers of neurotypicalchildren wail against dawdling.   Dawdling would be an amazing improvement at our house.  I’m tempted to carry my son to speed things along, but then all my in-home parent training would collapse and I’d have to start all over again.

How to teach a child to trust that his body will float in the water; or that getting on a horse isn’t horrible or that eating a grape won’t kill him.  Swimming, horse and nutritional therapies don’t cover fear.

But most of all, I’d like to brainstorm ideas for how to motivate a child with autism to keep going and not give up. Reading, speaking, socializing and studying can be very hard work.  Therapy, tutoring and other interventions can help, but when society throws that tantalizing excuse of low expectations at our kiddos, I want to scream.  I would like to learn how other moms instill in their children an unshakable belief in themselves and a desire to do their best.

The Simple Joy of Two Hours of Me-Time

September 22nd, 2009

Must get kids off to school.  Must get paperwork finished for triennial evaluation.  Must learn about assistive technology for screening next week.  Must schedule conference call, business trip and finish presentation for consulting client(s). Must blog, vlog, mentor, report. Must get birthday card, work out,  participate in subdivision garage sale, do laundry/housework/yard work/grocery shopping, take dog to vet.  Must…keep going…. Continue reading this post »

“Don’t Cry, Mom. I’m With You”

September 13th, 2009

My husband and I have  been trying to engage our son in Cub Scouts for the past two years.  Sometimes we think we are making progress, and other times, like today, we ask ourselves What were we thinking?  Everyone involved with the den – the scoutmaster, his wife (a parent educator),  the scouts and the other parents have bent over backward to support us, so we continue to have high hopes that Connor will find a place to develop friendships with peers.

This afternoon’s festivities were supposed to include a  ceremony whereby our son and the other scouts were to  graduate to Bear Cub status.  Connor had finished his requirements ages ago,  and we planned carefully to ensure that the event would be successful.  We decided  to arrive a little later to avoid the pre-ceremony commotion that always precedes a Pack meeting.  We gave Connor advanced notice of how the ceremony would be followed by a picnic and then a hayride, and we also agreed to allow him to take off his scouting uniform and  replace it with his customary pull-on  pants and tag-less, button-less shirt, immediately after the ceremony was finished.

Perhaps it was the garage sale the day before, or perhaps unstructured activity just isn’t in the stars right now, but for whatever the reason, Connor took one look at the picnic area and another look at the playground where other scouts were playing noisily on a life-sized pirate ship, and decided to go home. NOW. And so back home we went. 

We’ve left the scene hundreds of times before, forestalling many other social outings that were supposed to be fun, but for Connor, were torture.  Still, I really thought he was ready for this one.   And I blamed myself, Should we have arrived earlier rather than later? Timing is so important for these things. Should I have forced Connor to stay and accept responsibility? Perhaps I should’ve signed him up for that social skills course last summer, instead of waiting for next summer as planned.  Maybe he’d be further along socially if he weren’t an only child. Maybe he doesn’t feel welcome or worthy because he hasn’t been able practice conversation skills with a sibling.

When we came home, I started preparing dinner.  Before I knew it, I began to cry.  I was failing my son. So I hid my tears the best I could behind a simmering pot of spaghetti, Connor’s favorite Sunday dish. But Connor doesn’t miss a thing.  As I was sniffling around the kitchen, Connor came up to me and said, “Don’t Cry, Mom.  I’m With You.”  I felt as though I was staring into the eyes of Christ himself.  My petty worries were meaningless. My son knew better than anyone else his difficulties, his travails, and yet, as he told me in his next sentence “Mom, I’m  happy. Don’t worry so much.”

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101 Games and Activities for Children with Autism, Asperger’s and Sensory Processing Disorders, by Tara Delaney, M.S. OTR

Written by a pediatric occupational therapist, this book is full of affordable and fun ways to engage your child in educational play.  Click here for our story on how we turned an ordinary family stroll into an exciting adventure!

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Model Me Kids

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 b-Calm Audio Interventions

The b-Calm System provides audio technology to help calm and increase concentration in children on the autism spectrum.   To learn how we used b-calm, please visit our blog My Son Threw a Shoe in Class Today.

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L. Mae Wilkinson:

National Examiner for Autism and Education

National Public Policy Examiner

St. Louis Examiner for Autism and Parenting

Reporter,  Autism Hangout