Bravo Maestro!

William had his first middle school orchestra concert Thursday night.  He plays the cello, and orchestra is a big reason he wanted to stay in public school.  Though he’s no prodigy, the cello is important to him and he enjoys the group experience of orchestra.

In elementary school, I was pretty involved in this endeavor.  Orchestra was once a week and I often watched rehearsal. But of course, middle school is a different scenario and I worried whether he could keep up.

  

These worries led me to search out his teacher in September and share my concerns.  Mr. P asked William to do a playing assessment and afterwards said “I know what to do to help”.  A few days later, William had individualized music for each song, with the notes labeled and with simpler rhythms to account for his slower processing.  Amazing! I was so grateful. That is exactly what inclusion means to me – adapting the learning experience to allow the student to participate fully and at his/her own level.  

William practiced at home, not without errors, and I wondered how he was doing.  As the concert got closer the wondering turned somewhat to worrying.  Did I need to be on stage?  Should I arrange for a para?  What if he makes an audible mistake?  

When we got to school for the concert I asked Mr. P how I could be of help.  He tells me that he has arranged for a ninth grade cellist to assist William during the concert.  I know who the student is, and I know she has an older brother with Asperger’s. Again, amazing!  What a wonderful solution.  Because, frankly, having William be completely independent might not have worked.  And having his mother sitting on stage with him would certainly not be “mainstream.” The teacher setting up this arrangement with no request or help from me brought tears of gratitude to my eyes.

Of course, in real life no story is ever perfect.  At the finale of the last song, William continued playing for a few bars after everyone else stopped.  Afterwards, I heard some boys talking about this in the orchestra room, which immediately brought a little knot to my stomach.  Will they make fun of him?  Wish he wasn’t in orchestra?  Will he know?  Care?  

But I guess I’ll worry about something else instead.  I think Mr. P’s got this.

The Wrong Lenses

“Lately all I see of William is what he can’t do.  The work that is coming home from school is largely above his level. Orchestra is too hard.  Reading is too hard.  In Social Studies they are learning concepts like “cultural landscape”. In sixth grade.  I don’t know how non-autistic kids are doing it. Yet I know they are.  

And he’s not.

Every day I am reminded more and more of how he’s not doing it.  Until I see him only for what he isn’t and not for what he is.  Only what he can’t do and not what he can.”

That is the beginning of a post I started a couple of weeks ago but didn’t finish because it was too depressing.  

This happens sometimes – I see William only for what he doesn’t seem capable of.  Which is a terrible way for his mother, being chief cheerleader and advocate, to feel. 

I lose the perspective of "person first" language. This is the concept where instead of an “autistic child” you have a “child with autism”.  

It seems a lens of worry and uncertainty clouds my vision during those times, only letting in the disability and not the abilities, even though I know deep down that there is more William can do than he can’t do. 

Then last week, when I was still feeling pretty low, William’s principal left me a message.  Of course, when I saw the caller ID from school I prepared myself for the worst, but instead I got to hear how my son was seen through her eyes:

“Mrs. Nisi, this is William’s principal.  I just had to call you to let you know that William and I spoke today, and he is just so personable!  He made sure he knew who I was, and made sure I knew who he was.  I wanted to let you know this because I read your blog about sending him here, and I just want you not to worry, and to know that William is taking care of business at this school!’

So, a different set of eyes, a different lens, and William became more than the autistic child having trouble keeping up, he became a child with autism who is taking care of business!

Rules of the Road

Everyday most of us travel through an incredibly complex social world.  A world where we are continually adjusting our behaviors based on the situation, and where nonverbal cues, such as body language and facial expression inform our every turn.  Certain subjects are appropriate in certain situations with certain people, and you have to, almost instinctively, know which is which.

And the contradictions!  Be polite and courteous - but don’t be taken advantage of.  Be honest - but tell a “white lie” to spare someone’s feelings.  Be interested in other people - but don’t pry.  Share your own interests - but don’t be overbearing.

When you stop and think about it, it’s amazing that anyone can figure it out.

And that’s the challenge for people with autism, most can’t “figure it out” instinctively. This complex society, with its undefined and changing set of rules, traditions and mores, must feel like driving around a large city with no signage or maps.  

Or maybe it doesn’t. Maybe some people with autism are blissfully unaware of the scope and contradictions of the social environment. 

Sometimes it seems that way with William.  He will cheerfully greet an older student at the bus stop and seem almost non-plussed if that greeting isn’t returned.  He doesn’t know that he is a “lower rank” and shouldn’t reach “up the ladder”, so he doesn’t feel particularly spurned.

He will make a comment, such as “your breath smells bad” or “your house is really messy” that seems incredibly rude to us.  However, he’s really just making an observation, and he has no judgement.  We judge it, and judge him for saying it, but he is just noticing and remarking.

The world should be more like William’s.  Where there is no judgement, just an observation.  Where there is no social rank, and friendliness is the order of the day.

But it isn’t.  

So, we try to codify it for him.  Make a map of sorts, and an atlas.  And make it simple enough to remember and follow, but complex enough to accurately represent the labyrinthian society.

Luckily there are resources for this.  William is working on individual behavior skills  with a specialist at Fraser Child & Family Center.  (Last week he introduced the “filter” concept.)  Their long-term goal is to have appropriate social interactions 80% of the time.

Which would be a good goal for all of us!

First Day of School

Photograph courtesy of Matt Blum Photography.

Today was the big day.  William got on that bus for middle school. At 7:15, almost two hours earlier than he started elementary school.

With a color-coded organizer in his backpack and multiple copies of a color-coded schedule, he took a big leap today.

A leap from the cloistered environment of elementary school to the three-story labyrinth of the middle school.  From a place where the gap between ages 5 and 11 seems benign compared to that from ages 11 to 15. From one primary teacher that can really get to know him, to six different teachers that won’t have that same opportunity.  From a lunchroom where there might be 75 kids at most, followed by recess, to a cafeteria which strains to hold 250 kids and no outdoor time.  Yes, it’s a leap.

And, it is a leap of faith for us as well.  Faith in his desire to go to public middle school, and faith in the school system to do right by him.  I suppose it shows faith in ourselves, as well, to advocate properly, to guide just enough, and to continually assess if this is the best fit.

Although I have to say right now it feels more like a baby step of faith than a leap.  But increasingly, I see that this may be how it works for me.  I had enough faith in all of us to make it through one day, today, and it went well.  William got off the bus at 3 o’clock tired and hungry, but smiling and ready for a high five.

Which is a step, or maybe even a small leap, in the right direction.

Wearing My Heart on My Hat

One of the unique challenges of parenting a child with high-functioning autism is the invisible nature of the disability.  For William is definitely a normal looking kid.  (Actually, he’s darned cute, if I do say so myself!)

One friend told me that “It’s lucky he looks so normal.”  To her it’s a good thing, that William can “pass” for neurotypical in the superficial world.  And, maybe it is in some ways. 

But in other ways having a child with an “invisible” disability can be a drawback, especially when your child’s behavior doesn’t jibe with his “normal” appearance.

William is a social type that one book describes as “outgoing but odd”.  He is preternaturally friendly, and it doesn’t matter if you are standing in line at Starbucks -- he wants to meet you.  And ask your age, birthday, favorite color, favorite number, and if you have a Wii.  

People have generally been solicitous of him, sometimes even charmed.  But as he gets older, and bigger, this “outgoingness” seems a little odder. It can come across as prying, precocious and maybe rude.  And I’ve noticed people at the dog park, the ball game, and, yes, in Starbucks, who don’t quite know what to make of him.

If he was a child with Down’s Syndrome, or had an obvious physical disability, it would be different.  Unexpected behavior would be attributed to the disability, even if it wasn’t actually related.  

With autism, not only is the atypical social behavior related to the disability, it IS the disability.  How ironic -- this social disability that would be beneficial to be visible in society, is unseen.

So I wore my “Autism Awareness” hat a lot this summer.  To the dog park, Target Field, the State Fair and all over Boston.   It’s a subtle message, but people sometimes make the connection.  I saw a young mother on the swan boats in Boston’s Public Garden noticeably relax as William was "making friends" with her daughters when she saw my hat. 

Though it says “Autism Awareness” on it, this is what I hope the hat says to those we meet: “I am the mother of this boy with autism.  His disability makes it hard for him to socialize according to the ‘normal’ rules.  Please talk to him and see his heart, his soul, his optimism and his love. Thank you.”

Dressed for...Success?

This is part of a dog-park ensemble William wore the other day.

Parenting an autistic child has definitely been a different experience than with William’s two “neuro-typical” (NT) siblings.  In all the ways you would expect (we had speech appointments instead of playdates), but in other ways that I’m never sure how to handle.

One of these involves the area of personal style.

With the two older children my outlook on clothing was pretty hands-off.  I theorized that letting our daughter simultaneously wear polka-dots, plaid AND florals would let her “get it out of her system”! ( By the way, I was wrong.  And, as a 20 year old she has a fantastic style that is completely her own.)  With our older son, my only intervention was to ask that he either wear a black shirt OR black pants to school, not both.  

I believe in individual style, I really do. But I also know how you dress tells the world a little something about you.  And when you have a child with a disability, suddenly it seems like clothes can not only make the boy, but they might make the boy a target.

My friend works with high schoolers with ASD, and has a student re-entering public school from a home school environment. This young man’s sartorial choices include too-short jeans and sandals with socks.  My friend explained to his mother that these choices might single him out for teasing.  The mother objected, saying “It shouldn’t matter!”

She’s right.  It shouldn’t matter.  But it does.  Especially in middle school, which we are about to start. And so I will probably be a little more involved in William’s style than I would be if he didn’t have autism.  Which is not to say that he will be decked out in whatever is the pinnacle of trendiness right now.  It just means I will intervene if he tries to get on the bus with the outfit pictured above!

“Don’t Say He Can’t Do It!”

This was my reaction to one of William’s siblings when they expressed the idea William would never be able to slalom water ski, and therefore shouldn’t try.  I know why they said it, they were worried he’d fail.  How he’d feel.  How we’d feel.  Sometimes it’s easier not to try.  But the advocate in me spoke up.  I’d like to say I knew William would be able to do it, but I didn’t.  It just felt unfair to not let him try something any typical child could attempt.

What’s the harm in trying?  If he’s not meant to slalom ski, he can keep skiing with two skis.  Or just go tubing.  

Of course, he showed us. He did it.  He tried every time we were at the lake this summer.  He didn’t get discouraged.  He didn’t doubt himself.  And he did it.  He did it his way, by “dropping a ski” instead of being pulled up on one.  Once he got it, he did three laps around the lake, until we cut the engine so he could stop and rest.  Then three laps again later that afternoon.  And again that evening. And the grin on his face could have cleared a cloudy sky.

This story illustrates why we have decided William will attend public middle school this fall, instead of the small private school for kids with disabilities we were considering.  Simply put, that’s what he wants.  Desperately wants.  So much so that he said “Please, Mom, I’m begging you, let me try Southview!”

What would I possibly say to that?  “You can’t try it?”  “You’re too disabled?”  “You won’t be able to do it?”  No, I can’t say that.  

We’ll try it.  If it doesn’t work, we’ll go back to two skis.

And we’ll remember to wear a life jacket.

How William Felt About Camp

And, from the journal about his week I learn that this double thumbs up comes from being able to: go tubing, banana tubing, go on a pontoon boat, ride bikes, have sno-cones, go horse-back riding, have fire trucks visit, do music, play Yahtzee, make a t-shirt, play on a playground, go canoeing, do archery, play electric guitar and do karaoke ("Don't Stop Believin)!  

His counselor writes: "...he is a kind, friendly kid who is eager to try new things."  Indeed.

Thank you, Autism Society of Minnesota and Camp Knutson.

http://ausm.org/

http://www.lssmn.org/camp/

Is Mom Independent Enough for Camp?

William’s at camp.  “Sleep away” camp.  Overnight camp. Camp.

A normal activity for a normal kid.  Thanks to the Autism Society of Minnesota’s “Camp Hand in Hand” and Camp Knutson in Crosslake, children on the autism spectrum get to experience this normal activity.  Granted, their normal involves a 1:1 staff to camper ratio, picture schedules, and big lycra body socks for sensory input, but hey, it’s autism!

I know he will have a fabulous time.  This is what he loves - being outside, in the water, meeting new people, in the water. (Did I mention there’s a lake?) Doing all those camp activities, like fishing, archery, etc.  Thanks to a big-hearted and anonymous donor they will even go off camp for horseback riding.  And, they get to go tubing, the lifeblood of William’s summer.

I am so proud of him for wanting to go.  For being so excited to go - since January.  For saying “I’m nervous” as we pulled up the long wooded driveway at our assigned arrival time.  How wonderfully typical, to be nervous as you arrive to summer camp!

The staff was great, and helped him get settled easily.  Kurt and I dropped off his medications, checked the contact information and we were good to go.  

After our goodbye came the walk to the car. Now, I have lots of practice in walking away with a straight spine and without a backward glance.  He is my third child, after all.  And I know he’s safe and will have a great time.  Then why, 10 hours later, do I have a headache, knot in my stomach and the beginning of a huge stress pimple?

This is a big step towards the almighty concept of INDEPENDENCE.  (Granted, there’s a 1:1 ratio but still, it’s camp. Away. From parents. For five days.) Independence is the goal, the desire, the object of prayer and  sleepless obsession.  It’s what we want.  What we dream of for our kids with autism and other disabilities.  

But it seems the independence thing goes two ways.  Though William and I have had lots of time apart between school, nannies, etc., he has always been a phone call away. A quick text from Kurt or the sitter.  An email update from school.  Now, for five days, I have the challenge of being independent from William.

I just wish I had a Camp Hand in Hand counselor to help me!

Summer: High School Edition (by Janet Ha)

This blog post was written by my friend Janet Ha.  Janet and I met the first day of ECFE when our respective sons were turning 2.  At the time I was just realizing something was different about William's development.  While my career in ECFE was short-lived (turning into one in ECSE), luckily our friendship was not.  In addition to our friendship, Janet has been a part of William's life professionally, as his para in Kindergarten Kids Club. She is now making a career out of working with kids on the spectrum, specifically those in transition from high school to adult life.  Here is her post, for which I thank her immensely...

I have worked with the Edina summer program for high school students on the autism spectrum for 5 years.  This is our chance to be out in the “real world”. We work on transition skills, visit post-secondary schools and observe people doing all kinds of jobs. We talk about adaptations we might need to have a job some day.  We volunteer, explore the community and do recreational activities together. Most of all we try to foster peer relationships among the students.

Some parents shy away from sending their child to the summer program.  For many reasons, one being they worry their child will feel more disabled since everyone there also has a disability.  Or it is better to make arrangements with non-disabled peers. Which is fine, if those arrangements happen, but in high school anyway, often they don't.

Here is a story of one day in our program: We went to Savers, a big thrift store in Bloomington.  There had been a lot of discussion about how it might look and smell. A lot of "Mom says it will smell bad."  I told them we were not leaving until each person had chosen at least one article of clothing, and preferably two.  This took an hour and a half.

We all spent a lot of time in the book/toy/puzzle area.  One student convinced me to buy a special edition Monopoly game for the resource room for $3.99. (It is pretty nice, and has an improved bankers box and a carousel for the properties.) We got back on the bus and headed over to the laundromat at 50th and Xerxes.

Three students placed their single items in their own machines, but the others threw all their items in together.  Lots of excitement around the change machine.  A couple kids discovered sensory input by leaning against the powerful washers. Four students played Monopoly, hashing out the rules together (since each had a different idea about such things as Free Parking and whether or not property should be auctioned if the person who lands on it doesn't want it.)

Anyway, I love the program.  It be a real source of peer support and yes, education minus the anxiety. Plus, at only three days a week, everyone still has four days to play video games in the basement.

Summer in Full Swing

Thanks to Heidi Chen for this photo.

Many parents love the unstructured nature of summer, but I doubt they have kids on the autism spectrum.  Without a framework, three months of warm weather can feel longer than the coldest winter.  But put in too much structure, and it doesn’t “feel” like summer.  As always, the challenge is trying to find a balance.

     Right now we seem to have hit the sweet spot of summer - the weather is cooperating, and our routine has been reestablished. With long weekends spent at the cabin, the weekdays in between give William a solid framework to his summer, thanks to our nanny, Colleen.  

     Colleen was William’s para in first grade, and helps us after school and in the summer.  They have their own daily schedule consisting of schoolwork in the morning and then a fun activity.  She uses Saxon math and our own reading materials, and figures out just how to incorporate his interests (tall buildings! dog birthdays!) into their lessons.  One summer they did story problems based on video game characters outdoors with sidewalk chalk.  She’s also up for anything William might suggest - Edina pool, playdate, movie, Twins game, bowling, State Fair, Mall of America, and often texts cute photos to keep me posted on their fun.

     She’s great at helping William with coping skills without pushing him to the point of distress.  Since he learned about constants and variables last year in school, she's found a new framework for flexibility.  For example, a “constant” at the baseball game is getting ice cream, while a “variable” is which kind to get.  (Because you can’t ask a kid to NOT have ice cream!)

     Colleen has also taught things to our whole family, including the irrefutable fact that quesadillas made on the stove are far superior than in the microwave. And, in all seriousness, I realize how very blessed we are to be able to have help with William.  I wish every family with a child with ASD could have someone like her.

Back to School – but which one?

The school supply section appearing at Target right after July 4th has always bothered me, but this year more than ever.  Part of this, of course, is because summer just arrived here weather-wise, but there is a bigger reason.  William just finished elementary school in June, so middle school looms.  Last spring I made what I thought was a decision to have him go to The Whole Learning School, a wonderful and very small private school for kids with disabilities.  Since that time, I’ve had many second, and even third, thoughts about it.  William desperately wants to go to his assigned middle school, with his sixth grade peers.  What he thinks that will be like and why he wants it so badly, I don’t really know.  (I do know it speaks volumes about the community he felt in his elementary school.)  My struggle is that I have doubts that the public system can provide the individualized academic support he needs, but that the private school option has very limited social opportunities for him, which he craves.  So, what is middle school about?  Is it for social or academic enhancement? Will he even have any friends at the public middle school?  Are “neuro-typical” peers overrated when they’re adolescents? How much does the child’s own desire play into the decision?  There are no answers now, only more questions, and the hunt for the solution that feels like the best fit.

Jumping In

For some time I've thought about getting the families touched by autism and living in and around Edina connected with each other.  And, today seemed to be the day to take the plunge!  So, starting with this blog here, and a Tumblr account (are they called accounts?), here I go.  Likely a Facebook group will follow, maybe a Google group.  The landscape of social networking is vast and multi-faceted so it may take a little while to sort out the best avenue. We will find out what is the most effective and efficient, hopefully including some face to face!
More about me to come, but for right now, I live in Edina and I am a parent to an 11-year-old boy with autism. I am interested in connecting families together and with services and ideas to better help us all put this "puzzle" together!  Please get in touch with me through a comment here, or email me with feedback, questions, or submissions.  Thanks for joining me on this journey.