Autism is Not the Boss - L. Mae Wilkinson

Autism and the Search for the Perfect Valentine

February 12th, 2010

It was time to prepare for the big third grade ‘Friendship Party.’ a nice euphemism for the elementary school version of the Valentine’s Day card/candy exchange. We only had a mere two days to go before the big event. So, having a half an hour to spare between the after-school pick-up and an important call with my agent, I decided to take Connor to the local pharmacy to look for the perfect classroom Valentine.

We started in the candy section. I pointed to some chocolate candy hearts. “How about these, Connor?” I asked.

“No. Those are not healthy,” said Connor.

Okay, no problem.

We continued along the candy aisle. “How about these candy-filled bags with hearts on the outside?” I suggested hopefully, looking at my watch and noticing that time was running short. Connor shook his head. And suggestion after suggestion, the answer was the same –no, no, no! We were both beginning to get frustrated. I had to get home for my call.

After another half an hour, we both had had it. Connor had begun to cry, and I was seething. I said, “Connor what DO you want in the perfect Valentine?”

He responded quite emphatically, ” I DON’T WANT TO SHOCK PEOPLE!”

Thinking that he didn’t want to give a Valentine that might cause him to be teased, I took him home and asked him to think about it.

Later that evening, while I was rummaging through his backpack, I found a note advising parents not to include any Valentine’s gifts with peanuts because there was a student in his class with severe peanut allergies. At last I understood what Connor was trying to tell me. Connor didn’t want to buy candy that had peanuts or was made in a factory that made peanut products — those could cause his classmate to go into anaphylactic ’shock.’

The next morning before school, we went to our local big-box discount store, and found Valentine’s Day cards and some lovely Valentine’s themed lollipops that were made in a peanut-free factory. Good job, Connor.

(Who says that children with autism are not considerate of others??!!! )

Happy Valentines Day, everyone!

Tags: autism and valentines, valentines day
Posted in Education, General Parenting | No Comments »

Autism and Sleeping through the Night

January 26th, 2010

My son slept through the night last night…in his own bed. He also slept in his own bed the night before and the night before that and a whole six nights before that. That’s now TEN nights in a row that Connor has slept in his own bed. At eight and a half years old, he is finally sleeping on his own. How did we pull it off? I have no idea.

It isn’t as though we haven’t been trying for the past eight years or so. On the contrary, we’ve attempted just about every sleeping technique with Connor (but please let let me know if I missed anything): letting him cry it out, medication, bed time routines, sleeping beside him, fairy lights, bedside lamps, sleeping on the floor, story time, snack time, sleeping in the hallway, special pillows, a new bed, weighted blankets, special superhero pajamas, sleeping in a tent, threats, tears, sleeping in a chair and bribes. Finally, a kindly social worker told us, “Forget it for now. Let him sleep with one of you. All of you need your sleep, too.”

That was four years ago, and since then, Connor has been sleeping with either my husband or me (usually my husband, because I tend to make rather loud sleepy noises). And so, Steve and I became used to little feet at our backs, in our sides and occasionally in an ear. We have hugged the three inches of mattress left over from our little one’s creeping snuggle-attempts and have shivered in the cold when our special someone has decided to monopolize the blankets.

But we always kept offering, “Connor, would you like to sleep in your own bed this evening?” And ten nights ago, he finally said YES. And he hasn’t changed his mind so far.

One of the greatest parenting mysteries of all times is when to push and when to let a child develop on his own. I wish I knew the answer, but thank goodness Connor has appeared to have figured this one out by himself.

Posted in General Parenting, Sleep | 8 Comments »

New Year’s Resolutions for an ‘Autism Mom’

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!

Tags: Advocacy, autism, autism advisors, autism education, autism parenting, Education, family, parenting, parenting a child with autism
Posted in Advocacy, General Parenting | 1 Comment »

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!!

Posted in General Parenting, Uncategorized | 1 Comment »

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.

Posted in Advocacy | 6 Comments »

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.

Posted in General Parenting | 1 Comment »

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!

Tags: autism, family, grandparents, neighbors
Posted in Family Fun, Family Support, Grandparents and extended family members | 3 Comments »

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