Autism and the Hobgoblin of Comparisons

July 7th, 2010

‘Comparison, a great teacher told me, is the cardinal sin of modern life. It traps us in a game we can’t win. Once we define ourselves in terms of others we lose the freedom to shape our own lives.’ Jim Collins, Author ‘Built to Last’

Comparisons are my weakness.  I compare everything and everyone. I compare my son to his typically developing peers, his high-achieving cousins and other children on the autism spectrum.  What am I looking for? Any clue to demonstrate that “Our son is making progress” or “Connor is rapidly closing the achievement gap.” Of course Connor is making progress!  Every day and in every way he learns something new,  just like everyone else.  How silly I am to think like this, and yet my heart sinks to my toes when I see a group of children talking comfortably with each other as though they were already adults or throwing a baseball back and forth with ease. I also compare myself to other parents.  What might I be missing? A new therapy? A new therapist, school or doctor?  A new diet?  Am I spending enough time with Connor? Do I have the right balance of focusing on his strengths and interests while  working on/making accommodations for the areas that are most difficult for him?

Another comparison I frequently engage in is to search for things not to do. Much of this is also rooted in my own insecurity, such as “There is no way I’m going to act like that with my kid.  Those are really bad parents who didn’t even care to get their child the help she needed, and now she’s a mess.”  Really, who am I to judge? 

Most of the time, I stay fairly level -headed,  but a little self-doubting part of me wonders if there is more I could be doing to help prepare Connor for adulthood, and how to avoid the problems I’ve witnessed with other families who deal with drugs, alcoholism, neglect or abdication of their roles as parents. The specter of those children who grow up without having good choices haunts me. But comparison is much easier than the very difficult task of figuring out precisely what my child needs and how to balance those interventions with the same [and very real] quality of life and acceptance issues that our society- schools, law enforcement, employers - need to overcome on behalf of the thousands of individuals with autism…including my son.

Goodbye, Mrs. Barnes. We’ll never forget all the good that you’ve done for our son.

June 1st, 2010

I was standing in the jewelry store during the last day of the school year, when the salesperson asked me politely, “May I help you?”  I answered, “I am looking for a special gift for a special teacher, and it can’t be too fancy or she won’t accept it.” And then I burst into tears. 

How could I possibly thank the woman who had been my son’s aide and academic lifeline for the past four years?  How could a necklace or a locket or a cameo pin ever express our gratitude for her sweet and loving attention?  Mrs. Barnes always seemed to know when to help Connor and when to fade back.  She had the respect of both her general education peers and school administrators. 

But most of all, she believed in our son.

She fought with us to have Connor spend 90% of his time in a gen ed class.  She knew that with a little 1-to-1 tutoring he could participate in the same testing as his academic peers. She saw his gifts instead of his delays. She  helped him course-correct when he was off-track, off-kilter or off-and-running in full-blown meltdown mode.  She also encouraged him to give school his best effort,  and she listened to what he had to say instead of telling him what to do.

And now that Connor will be going into fourth grade next year, she realized that it was important to break the bond that they had shared for so long.  It was time.  With tears in her eyes, she said, ” I can’t imagine my life without him.  I love him so much, but it is time for him to move on.” And we agreed. 

 But it will never be the same without her. Thank you, thank you, thank you.

We wish you health, happiness and most of all, the opportunity for her to help yet another special little boy or girl the way she has helped ours.

What’s Wrong with This Picture?

April 21st, 2010

There are many perceptions about autism that need to be re-calibrated, and there has been good progress in terms of autism awareness and understanding.  But in terms of equal rights for children on the spectrum, it’s just a mess. For example, why are children in elementary school arrested for lashing out at teachers and paras who try to restrain them?  Wouldn’t most parents tell their children to fight and run away from their attackers??  But in Missouri, Arkansas and other US states, children as young as 6 or even 11 years old who resist restraint are arrested, often for felonious assault, without a second thought. 

What’s even worse is the way school districts censure so-called typically-developing children who prey on autistic kids.   For example, when three children recently conspired to trap an autistic elementary school student in a bathroom (two boys stood guard while the other boy sexually assaulted the little girl), the school district’s statement was “this is unnatural behavior…and we are considering legal action.”  What?!!!  Rapists, pint-sized or otherwise, are considered for legal action but children who resist painful and frightening restraint are arrested on the spot??!!  What’s wrong with this picture?

And don’t even get me started on services. I’ve had to threaten, cajole and nag to get my son OUT of certain services that he has outgrown, while a dear friend of mine is considering divorcing her loving husband of 25+ years to tap into his 401K plan so that she can have the funds to provide the services that her child needs, but her school district won’t provide. WHAT’S WRONG WITH THIS PICTURE??!!

Autism and the Many Kindnesses of Others

March 22nd, 2010

We have become alarmingly accustomed to hearing the awful news about the mean and rotten things – bullying, discrimination and other abuses – that happen to autistic children. Yet, we don’t often talk about the many kindnesses – some big and some small – that go unrecognized and occur every single day in our children’s lives.  Here are a few of my favorites:

- The school nurse.  When Connor spilled something on his pants, he was taken to the nurse’s office for a temporary pair.  Of course, the only thing that suited him were a pair of girls’ leggings.  The nurse called me to tell me that she allowed Connor to wear girls’ clothing, not out of punishment, but because those were the ones he preferred. Connor has a lot of tactile sensory issues, so I wasn’t the least surprised that he would prefer soft, knitted pants.  As it turned out, the girls’ leggings were gray in color and looked like sweatpants on our skinny little son, so it wasn’t at all as I had imagined — that my son was walking around his school in pink tights!

- Connor’s para. What an angel.  She’s been with Connor for four years now, and understands him probably better than anyone, Steve and I included.  There are far too many of her kindnesses to mention here, but the one thing that really touched us was how hard she worked with Connor to make sure he could perform with his classmates at his school concert.  There were at least five new songs to learn, and many pauses and transitions within the skit-based program. In St. Louis, paras are not paid for after-school work, but she came to the concert to see how he did and to cheer him on.  Of course Connor stood on the second row, hopped up and down on the riser (very cute, actually) and kept up with all of the other students.

- The lady on the rental car bus.  We  had just disembarked from a long flight, and were sitting on a crowed bus going to the rental car counter.  Connor was having a very hard time, and I was fighting for patience. The woman sitting next to me leaned over to me and said, “I have been listening to people say that autism is a gift, and I would tend to agree with them. Still,  it must be hard as a parent to reconcile those unique gifts with the parenting responsibility of overcoming a child’s social and sensory challenges.”  Instantly, I became re-centered and balanced.  I’m still not sure how she know Connor had autism, but her words were at once comforting and directive.  Perhaps it’s no small wonder that this lady was also a Minister.

There are many stories like these, but I didn’t want to dilute their impact by writing too many at one time, so more to follow…and please feel free to send some of your own.

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!

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.

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!

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!

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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.

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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