Archive for the ‘General Parenting’ Topic

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!

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

Monday, 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!!

Peer acceptance and autism

Sunday, 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.

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.

The Simple Joy of Two Hours of Me-Time

Tuesday, 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…. (more…)

“Don’t Cry, Mom. I’m With You”

Sunday, 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.”

The Value of a Parent Mentoring Chain

Friday, September 4th, 2009

Okay, I admit it.  My normally sunny, positive disposition occasionally suffers (spirals?) into an abyss of self-doubt, despair and worry.  When I get that way,  I have a gift I can rely on time and time again… I’ve learned the value of a parent mentoring chain. (more…)

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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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