Archive for October, 2009

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

Saturday, 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?

Friday, 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.

Stuff that works - for us

We  don’t assume these products will work for everyone–that’s why we ended the title with the parenthetical (for us). But if you are looking for new things to try, please read the accompanying blogs to view our experiences with these products. 

 

 

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!

101activities and games.1

 

Model Me Kids

Model Me Kids® has broken the code on tools to teach social skills to children on the autism spectrum.

Click here for our success story and a full product review.

 

 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.

bcalm_badge3

Do You Have a Product?

Do you have a product you’d like us to review for Stuff That Works™? Contact us today.

 

L. Mae Wilkinson:

National Examiner for Autism and Education

National Public Policy Examiner

St. Louis Examiner for Autism and Parenting

Reporter,  Autism Hangout