Posts Tagged ‘family’

Autism Ups and Downs: When Parents Lose Their Way

Monday, September 20th, 2010

Losing our way as parents happens.  Typically, it begins with the nagging doubt  that we aren’t doing something quite right, but we cannot  for the life of us figure out what it is. Sometimes the realization is a false alarm generated by other stressors in our lives.  Other times, the doubt is based in reality, but the underlying issue is easily identified and corrected by advice from other parents,  professionals or the ever-helpful Google search engine.

But other times, we parents do come to a point where we don’t know what to do, and all of the advice, research and theory just won’t cut it.   We need hands-on training.

That’s where Steve and I are now, and that’s when I know it’s time to call in the in-home parent trainer.

I do not like in-home parent trainers. I don’t dislike them; they just scare me with their common sense and practicality.  In fact, it’s always been my experience that our parent training is similar to the “Nanny” TV shows (except there aren’t any cameras, thank goodness). In those programs, the trainer patiently and quietly observes the family as they go through their day-today routines. The trainer then comes back  to reveal parenting errors that were obvious to everyone watching, except the oblivious parents. 

We know, we’ve been clueless parents, too.  Some suggestions that we’ve fielded from our trainers are:  ”Connor might walk better if you’d let his feet hit the ground once in awhile.” (We were carrying him too much) or “So what do you think he’s feeling right now?” (Reinforcing the idea that Connor has the right to provide input into his own care and treatment options).

So as painful as it can be, in-home parent education is well worth the time, trouble and less-than-flattering view of ourselves as parents.  But I dread it, even as nice as the trainers are, and even though the cost is covered by the State.

But wouldn’t it be even nicer if we had access to parent training on a continuous basis?  I, for one, believe that the Parents as Teachers/First Steps parent education we enjoyed when Connor was an infant should extend through at least middle school.    In Missouri, the Parents as Teachers training program ends when the child begins pre-school.  The trainers, usually ex-teachers who prefer to work part-time, show up at the parent’s doorstep every month or so to check on the child’s  progress and to give parents useful and fun activities to assist his/her development. Now that Connor is 9, and is officially in the ‘tween’ stage, we could use that help now.

New Year’s Resolutions for an ‘Autism Mom’

Thursday, December 31st, 2009

Autism and life are inextricable,  but certainly not incompatible nor joyless.  Sometimes, though, thriving with autism might take a bit more planning and commitment. Thus, with high hopes and good intentions, I join with many others in making my 2010 New Year’s resolutions. Here are mine, which have been tailored to an autism-friendly mode:

1. To stop dithering about my son’s educational placement, and get him where he needs and wants to be.  It all started with Connor’s statement, ”There are too many students and staff at my school.  I can’t concentrate.” All the sleepless nights, hand-wringing and relationship-cultivating efforts with the special education staff won’t change the fact that his current services and placement are not working as well as they could be. Dithering about the advantages and disadvantages of home school, private school or switching to a new public school is not helpful.  It’s time to get out those scorecards, interview guides, site tours and other due diligence methods that I used for years in the business world to discover what alternatives are out there, and how they may fit with Connor’s needs.  Surely there is some solution that incorporates inclusion, academic achievement, services  and a strength-based/individualized curriculum in an environment that my son will enjoy. (By the way, he’ll be in on the decision-making, too, along with our banker!)  Estimated completion date: June 1.

2. To talk less. This is a difficult thing to do.  I love words.  I love how words combine into phrases and phrases into sentences and sentences into paragraphs.  I even like to say the same thing twice, but in different ways.  Unfortunately, Connor doesn’t understand long monologues, and has even said “Mom, you talk too much.”  I’m sure my spouse would agree.  Estimated completion date: about 25 years from now.

3. To develop a passion for fresh fruit and lap swimming.  I thought these were more specific than “to adopt a healthier lifestyle.” The cholesterol-monster is already at work in my body, so diet and exercise are important for me, and fruit 3x per day and swimming 3x per week should be relatively easy to pull off. Besides, both can help my skin maintain a youthful glow, which at my age is much needed. Estimated completion date: ongoing, with constant vigilance and persistence.

4. To be willing to share what I’ve learned  and to keep learning. Mentoring and advocacy are critically important.  Moms and dads with autistic kids have a tank full of collective knowledge, and that knowledge is not siloed, even though the autism community that serves us is highly specialized.  In other words, we know how speech, OT, PT, APE, ABA, vision, music, art and other therapies fit into IEP goals. We know how concomitant medical issues may require the services of  a bunch of experts–an allergist, an  immunologist, a nutritionist, a gastroenterologist, an ear-nose-and-throat specialist, a sleep therapist, a pediatrician, a pharmacist, a psychologist, a neurologist, an attorney or even a social worker.  We’re pretty smart people, and I, for one, am glad to be part of such a group. Estimated completion date: always to be accessible for sharing; never to be finished with learning.

Happy New Year to you all!

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!

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Mama, Don’t Cry for Me a song written by Mandy Harker and Sharee Wolfley and Sung by Kalii Palmer. Listen when you really, really need the strength to keep believing that everything will be okay.

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L. Mae Wilkinson:

National Examiner for Autism and Education

National Public Policy Examiner

St. Louis Examiner for Autism and Parenting

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