<![CDATA[Batavia Special-Education Parent Network - Blog: Exceptional Life]]>Mon, 22 Jan 2018 04:43:09 -0800Weebly<![CDATA[Play Nice]]>Wed, 13 May 2015 04:24:14 GMThttp://bspn-batavia.org/blog-exceptional-life/play-nicePicture
Several years back, when Marek was in pre-kindergarten, he began having regular playdates with a great kid in our neighborhood. Like many four-year-olds, Marek and his friend didn't always get along. There were power struggles about what to play and when to play it, and Marek's ADHD occasionally caused him to play too rough and make his friend mad. But after a few minutes of disagreement, things would go back to normal.

Over the years, I have sometimes found Marek's personality hard to understand. He likes other kids, but he is happy to play by himself if nobody is tuned into his particular area of focus at the moment. His first grade teacher and I had concerns about his social skills, since he would often turn down invitations to play with other kids during recess. Despite his occasional indifference to others, Marek seems to be popular. He gets together often with his longtime neighborhood friend. There are several other boys from his class at school who have come over to our house to play and have had Marek over in return. It's interesting to see how his social skills have evolved, even though he remains an introvert. He has figured out how to compromise and be a gracious host, and disagreements with friends are infrequent these days.

As in many other things, Lukas's social skills have not evolved typically. His communication skills are much better that they used to be, but he sometimes gets fixated on a silly word like "poop" or "underpants" or "toilet" and repeats it continuously, cracking up with adorable giggles that become less adorable after 10 minutes and downright unbearable after 20. He doesn't comprehend the social niceties of visiting somebody else's house - that it's not ok to tour the house without an invitation, and it's definitely not ok to get into your host's bed and leave your socks there. His understanding of social rules are better than they used to be, but he still needs plenty of guidance. And while Lukas doesn't have many meltdowns these days, the last thing I want is for one to crop up when I'm not around to handle it.

All of these concerns have made me hyper-vigilant when it comes to Lukas's social life. Playdates are generally scheduled with family friends who have known Lukas since birth and accept his differences. We've gotten friendly with some other families with whom we get together pretty frequently. In every case, the get-together is at my house, or I come to the agreed-upon location and stay. Marek gets to walk the two blocks to his neighborhood friend's house by himself, or get picked up and dropped off by another friend's mom. Lukas's friendships are always supervised by me.

Lukas's social skills may not be typical, but his desire for independence and a typical play experience is quite well developed. He wants to have kids over, kids that I don't really know well. He wants to be invited to these kids' houses. He wants to be dropped off and left to play without my involvement. He knows that his brother has more playdates, better playdates, with a bigger range of kids, and he is very angry about it.
"I always NEVER get to walk to a friend's house!"
"I want X to come over. I always NEVER have friends come over."
"I always NEVER get dropped off. I want to get dropped off!"

He's right to be angry. The situation is totally unfair. I get it. Although he is autistic, Lukas is an extrovert. Unlike his brother, he craves contact with people over anything else. By carefully managing and monitoring his relationships, I am holding him back and making him unhappy.

But I am afraid. If I let go and give Lukas more independence, will he be able to sustain a friendship? Will he learn to negotiate the little disagreements and come to a compromise like Marek and his friend? Will he wander off for a self-guided tour of the house, leaving his friend to play alone while he leaves his socks in unexpected places? How can I be sure these new kids are NICE, that they will be understanding and accepting of differences?

I know if I want Lukas to grow and develop his social skills, I have to change. I'm starting small. Last week, I invited a kid from Louie's class to come over to our house after school. I hovered for a little while, making suggestions for what they might play together. Then I made myself go to the kitchen to work on dinner. About 20 minutes later, I went down to the basement to see how things were going. I found the two first graders playing Minecraft on the Xbox together, earnestly discussing the best way to build a roller coaster. The scene was not one bit different from what I see when Marek has a friend over.

The school year is nearly finished, so I have some time to plan my strategy for next year. I think my initial goal will be one playdate per month with several different kids. After we have three or four kids over to our house, somebody is bound to invite Lukas to their house. And maybe with a couple more successful experiences under his belt, Lukas will be ready to go it alone. And maybe I'll be brave enough to let him.

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<![CDATA[Moms United]]>Thu, 26 Mar 2015 03:03:11 GMThttp://bspn-batavia.org/blog-exceptional-life/moms-unitedPicture
I can remember a time when I thought other moms were the enemy.  I could see their critical glances in the family locker room at the gym, watching Lukas melt down because he wanted to go swimming while Marek hit him because he categorically disagreed.  There were the Facebook posts showing perfect family outings enjoyed by mothers who could competently negotiate the world without disaster.  There was the grandmother at the Old Spaghetti Factory in Newport Beach, who made nasty comments about Lukas's behavior as we tried quickly to scarf down a vacation dinner at 5 p.m. on a Thursday.  Then there was my own mother, who made slyly critical comments, and once opined, "I had four boys, and they weren't like this.  I must have done it right, because they weren't like this."

Everything changed with Lukas's autism diagnosis.  Before, I was the terrible parent who could not or would not control her unruly boys.  With one word from a behavioral pediatrician, I became a mom struggling with the challenge of raising a child with a disability.  A few years and a couple of ADHD diagnoses later, I was supermom, making life work despite a trifecta of neurological complications. 

It's all in your perspective, I guess.  Knowing that Lukas had autism made other people understand that my boat wasn't as easy to row as they thought.  People with more typical lives became a bit more tolerant of my traveling circus of chaos.  People who traveled in atypical circles stepped up to help me.

Getting a diagnosis rocked my world with endless questions.  How could we manage day-to-day life?  What would the future hold?  Who could help us?  I burned up the internet, but didn't find much information I could use.  My salvation was Lukas's occupational therapist.  I would come to her with a dilemma, and she would point me in the right direction.  When I wondered how Louie would ever go to preschool, she directed me to my school district to ask about early childhood screenings.  When Lukas was the only two-year-old who wouldn't sit in the circle and participate during parent-tot gymnastics class, she sent me to the park district to ask about inclusion assistance.  Years down the road, she shared her own experiences as the mom of a son with ADHD and helped me with some questions completely unrelated to autism and occupational therapy.

I had friends with kids on the spectrum.  I had always avoided speaking of their kids' disabilities, thinking that it was more polite not to bring it up.  Now, I was a member of their club, and they reached out to help me.  One recommended I ask my Early Intervention coordinator for my own copy of the Boardmaker software I'd need to create visuals, thereby saving me hours of time at the public library.  They gave me advice and moral support as I prepared for Lukas's first IEP meeting.  Most importantly, they helped me understand that I wasn't alone.

It's been almost five years since Lukas's diagnosis, and in that time my perspective on other mothers has changed completely.  I talk very openly about Lukas and autism, not only to educate people who just don't get the funky behaviors that accompany developmental disabilities, but also to offer myself as a resource or a friendly ear.  And I'm always looking for a friendly ear too, someone who has insights I can use as I work to help Lukas grow.

Maybe the mommy wars are alive and well and lurking in every controversial post on social media, but, in my experience, they don't exist among the ranks of moms with special-needs kids.  We're all on the same journey, and we want to make sure everybody gets where they need to go.  Those of us a little further down the road like to call back some encouragement to help those behind us find their way with a minimum of wrong turns.  

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<![CDATA[Just the Thing]]>Fri, 20 Feb 2015 04:08:13 GMThttp://bspn-batavia.org/blog-exceptional-life/just-the-thingPicture
Louie's birthday is coming up in just a couple of weeks.  I love birthdays, most of all my kids' birthdays, because I have the opportunity to shower them with love and stuff, surround them with nice people and throw a great party.

As my kids get older, I find that the birthday planning process gets incrementally more complicated and difficult.  The complications and difficulties are different for each kid.  Marek and I wrangle over the party details (because for the Type-A older child, only the perfect party will do), and I struggle to choose a reasonable selection of gifts from the thousands of dollars of electronic gadgets and plastic junk on his current wish list.

With Lukas, birthdays are both simpler and more complicated.  Louie is not terribly picky about party themes and details.  When I suggested this year that we have a party at his gymnastics studio, he readily agreed.  He rattled off a substantial guest list that included our family friends' kids and all the boys in his class at school.  Here was the first bump on the road to a great party.  

Lukas seems to like all the kids in his class, and he's a very outgoing, if socially awkward, first grader.  He's also new to his school this year, so I have had very limited opportunities to witness his interactions with the boys in his class.  He hasn't had any playdates with kids from school, and he hasn't been invited to any birthday parties.  Earlier this year, I was helping out with small groups of kids in his class, and one of the boys pointedly told me, "I'm having my birthday party on Saturday, and Lukas is not invited."  Marek tells me this same boy is sometimes mean to Lukas at school, something I've asked his teacher and paraprofessional to watch for.  

All of this makes me worry about how he's fitting in and whether his classmates will come to his party.  I know I shouldn't worry; if only our family friends come, Louie will still be surrounded by many kids who will happily celebrate with him.  But I want so much for him to have a secure place in the social order at school, and, for better or worse, I will be studying the RSVP list for this party like tea leaves revealing Lukas's social future.

After all that worrying, buying birthday presents should be the easy part, but any parent of a child on the spectrum knows that these kids' wish lists can be a challenge.  Like a lot of autistic kids, Lukas has special interests.  Sometimes these special interests are mainstream, and it's easy to find the things he wants.  Around Christmas, he was focused on Minecraft, like every other elementary-age kid on the planet, and his desires were easy to meet.  He also goes through periods of fixation on roller coasters, superheroes, and Thomas and Friends toys.

But then there is The Legend of Zelda.  Any video game fanatic of a certain vintage knows this series of video games, but the general public is blissfully ignorant.  The Legend of Zelda's hero is Link, a pointy-eared warrior elf who explores, battles evil characters, and solves puzzles to complete his quests.  I played the original game back in the day (cough - 1987), and I confess to a deep understanding of Link's charms.  Well, Link lives on into the 21st century, and Lukas is obsessed.

Two years ago, Marek and Lukas both decided to be Link for Halloween, leaving me in quite the bind.  Custom-made costumes were available to the tune of $200 each, mostly targeted to adults wanting to dress as Link for Comic-Con.  That was a bit beyond our costume budget, so I enlisted the help of a friend to sew the tunics and caps.  I made the belts and accessories myself.  Halloween came and went, and Lukas continued to wear the costume around the house (and sometimes out of the house).  He outgrew his tunic and moved on to Marek's larger one.  Now Marek's tunic is starting to get a bit snug.  He has also burned through several replica swords, shields, and other accessories, and since the character always gets new-style stuff in every new iteration of the game, Lukas's needs grow.

When I asked him what he wanted for his birthday, Lukas listed most of the swords and shields from Skyward Sword, the latest version of the game.  It's hard to find Legend of Zelda items for sale, and most of those items center around Ocarina of Time, the version of the game popular in the late '90s.  After hours of combing Amazon and eBay, I was able to find a non-lethal (foam) version of the Master sword and a relatively durable version of the Hylian shield for less than our weekly grocery bill.  On Etsy, I vacillated over a hand-sewn leatherette backpack styled to look like the Hylian shield ($70 plus $20 shipping from Portugal) and a hand-carved wooden Deku shield that looked like it could survive an actual sword fight ($60 and well worth it, but not a shield on his list).

And then, success!  I found a lady who advertised wooden Viking shields with leather and metal details for a very inexpensive price.  After a short email conversation, she agreed to make Louie the Banded shield he wants, complete with wood, leather, metal studs, and a riveted grip.  She even promised to get it here for his birthday.  Add to that the other sword and shield, and a spanking-new tunic sewn by his Aunt Veronica, and Link Lukas will be standing tall.

This little sip of victory is enough to settle me down a bit.  I can't control Louie's social standing at school or make sure his classmates come to his party.  But I can equip my little warrior elf for his imaginary battles.  That will have to be enough for now.

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<![CDATA[Celebrating the good things]]>Wed, 07 Jan 2015 17:50:28 GMThttp://bspn-batavia.org/blog-exceptional-life/celebrating-the-good-thingsPicture
We've had some tough times around here lately.  Last month, I had to advocate for Lukas in a really difficult situation, and I found myself feeling sorry for myself and sorry for him, sorry to have to deal with issues that don't usually crop up for typical kids.  My kid, socially young for his age but big enough to look a year older than he is, can be totally misunderstood, and that makes me very sad.

Challenges like this skew my perspective.  Everything is twisted by a negative experience, and it's easy to disregard the good things.  My son has a disability that makes life hard sometimes, but he also has a lot of strengths and lots to celebrate.  To start the new year off right, I want to acknowledge the things that are going right and the many blessings for which we must be thankful.

1. It's easy to take this for granted, but Lukas is healthy and thriving.  There are so many children who are ill or medically fragile.  Our small crisis is nothing compared to fearing for the life of one's child.

2. We have an incredible support system.  Although our family lives far from us, they cheer us on regularly through phone calls, texts and Facebook posts.  Then there is the family we have chosen, the network of aunties and uncles who are not blood relatives, but who love and support my kids as if they were.  Even our relatively casual friends, parents of Marek's peers, go out of their way to be welcoming and inclusive of Lukas.

3. We are part of a fantastic school community, with a small army of teachers, administrators, paraprofessionals, therapists, and support staff who care about our kids and do everything possible to ensure their success and happiness.  I was nearly brought to tears at Lukas's IEP meeting by the kindness of our team, who clearly love our boy and want all the best for him.  Being in a room full of people who so clearly care for Lukas was a balm to my injured heart.

4. Lukas has made incredible strides in the last year.  He learned to ride a bike without training wheels and tools around our block with great facility.  He moved to our neighborhood school from a different school with a special program, and he made friends with a whole new group of kids without batting an eye.  He's just completing his first session of gymnastics at St. Charles Gymnastics Academy, and he is loving it and making progress.  We're hoping this will be his activity for years to come.  He also seems to be settling into the higher demands of first grade, complaining less and working more independently on homework.  Lukas will never be the greatest test-taker, but his second-trimester MAP scores rebounded from the horror of the fall results.

Considering the whole picture, we have it pretty good.  I'll try to remember that the next time I start feeling sorry for myself.  And now, onward into 2015!

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<![CDATA[Brother Against Brother]]>Tue, 09 Dec 2014 04:10:24 GMThttp://bspn-batavia.org/blog-exceptional-life/brother-against-brother
My boys are only 18 months apart in age, and, when they were tiny, I often heard people say, "They'll be best friends."  The assumption was that kids close in age and of the same gender would occupy the same phase in life, have the same interests, and generally be kindred spirits.  This was my fervent wish.  

Of course, wishes often differ from reality.  Marek and Lukas have little in common other than an address, a set of parents, and an ADHD diagnosis.  Where Marek prefers individual pursuits like video games, drawing, and writing, Lukas loves nothing better than running amok with a bunch of kids.  Marek excels at sports like golf, baseball, and tennis, but Lukas walked, crossed the monkey bars, and learned to ride a bike without training wheels at earlier ages than his older brother.  And while neither boy is neurotypical -  ADHD being a neurological difference too - Lukas struggles more due to his comorbid autism diagnosis.  Receptive and expressive communication delays make reading comprehension and attending in class a challenge.  His fine motor delay makes him tire easily when writing, and his writing is less legible than typical for his age.  Sometimes he gets stuck on a question or snippet of dialogue from a video and repeats himself for a while.  Changes from routine can cause him anxiety, and when he gets upset, he whines and sometimes melts down spectacularly.

It's the meltdowns and the repetitive stereotypical language that causes the greatest conflict between my kids.  Marek is a strong-willed boy with an overdeveloped sense of propriety and some difficulty regulating his own emotions.  Tolerance does not come easily to him, and sometimes, it doesn't come at all.  Often, I find myself dealing with two screaming kids, one melting down because his day is a bit off-kilter, the other having a fit because his brother will not stop screaming.  Marek gets angry when his brother won't stop repeating himself, particularly when he's trying to focus his own fleeting attention on homework or the book he's reading.  

In calmer times, I have conversations with Marek about his brother's disability, explaining to him that Lukas can't help the rapid-fire talking, the whining, the screaming, because of the different way his brain processes information.  I explain to him that his getting upset makes the situation escalate and makes it harder to calm Lukas down.  I ask him to try to stay calm, to leave the room, to let me try to fix the situation without his involvement.  I know he tries, but annoyance generally wins out.

It's difficult for me to be very angry with Marek.  He's only eight, and the impulsive nature of his particular version of ADHD makes it hard for him to keep his emotions in check.  Even with the benefit of age, I sometimes struggle to maintain control when Lukas goes off the rails.  But there's another reason I sympathize with Marek's frustration.

When I was growing up, our family was a foster family.  Mostly we took in healthy newborns who cycled through our house for a few weeks or a few months before launching a new life with their adoptive families.  And then came David.  

David was a three-year-old with a mild case of Cerebral Palsy and significant gross motor, fine motor and speech delays.  He came to us temporarily while his regular foster family took an extended vacation abroad.  In the few months he lived in our raucous household, he started talking, potty trained, and made significant progress in other areas.  The adoption agency permanently placed David in our home, and he eventually became my brother.

In the 1970s, autism often went unidentified, and David never received that diagnosis.  Knowing what I know now, I suspect that my younger brother falls somewhere on the spectrum, given his developmental delays and the behaviors that filled me with fury when I was a child.  David talked constantly about roller coasters, always had to sit on the left side in the back when riding in any vehicle, particularly buses, sometimes had incomprehensible meltdowns at inopportune moments, and flapped his hands all the time.  He never got in trouble with my parents, did not have to do chores until he was well into his teens, and (as I saw it at the time) got preferential treatment in all sorts of other ways.  

For much of my youth, I made things very difficult for my parents because of my terrible behavior.  When I was little, I sometimes bit David.  One one occasion, I hid one of his special supportive shoes and made him miss the school bus.  Sometimes I broke his toys on purpose.  I look back at that time and wonder what demon possessed me.  To anyone else, I was friendly, sweet, and generous; to David, I was a tormentor.  Marek's verbal tirades seem downright reasonable by comparison.

Today, David lives independently in Los Angeles, works full-time, and travels all over the Los Angeles area enjoying his interests (which still include roller coasters).  He came to Chicago last summer with my parents, and he, Lukas, and I went to Great America together.  We both grew up, and I - thank goodness - grew more kind and tolerant.

I see this conflict from both sides - the resentful child who can't stand the annoying behavior and the special treatment a disabled sibling sometimes gets, and the frustrated parent who must balance the needs of two very different kids while navigating everyday life.  It's an interesting line to straddle, because I feel a lot of shame about my past cruelty to my brother, and I can't imagine anyone being so horrible to my Lukas.  At the same time, I can still slip into the skin of my former self and empathize with Marek.

I have a friend who grew up with an autistic brother, and she has told me that her experience has made her more tolerant and more supportive of individuals with disabilities.  Perhaps by explaining Lukas's behaviors to Marek and coaching him along the way, I can guide him to the same place.  Occasionally I see magic in my house - Marek patiently coaching Lukas on Minecraft technique or two masked and caped heroes acting silly in the kitchen.  I know wishes and reality are very different things, but I still hope to see the day when my boys are best friends.
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<![CDATA[Fighting Fear]]>Tue, 04 Nov 2014 01:56:45 GMThttp://bspn-batavia.org/blog-exceptional-life/fighting-fearPicture
So far, this school year has been a mighty challenge for Lukas, and, by extension, for me.  Kindergarten stressed reading mostly, and Lukas's visual learning style and photographic memory made it easy for him to learn sight words and many other words quickly.  The demands of first grade, with greater emphasis on math concepts and daily homework, have caused many meltdowns and dramatic pronouncements around our household.  The simplest math assignment can take Lukas 30 to 45 minutes, most of it spent whining, complaining about imaginary injuries and illnesses, and acting silly to distract from the task at hand.

And then there are the standardized test scores, feedback from the Measures of Academic Progress (MAP) tests the kids in our district take three times a year.  Lukas started out in kindergarten with respectable scores in both math and reading, but his scores have gradually declined with every test.  The latest scores were dramatically poorer than the last, completely contradicting the progress I have observed.  I find myself dreading the parent-teacher conference this week, afraid to hear the news is worse than I think.

In short, the rocky start to this school year has me in the clutches of The Fear.  Any parent of a special-needs child (and often, any parent) knows The Fear, the horrible, sinking feeling that our child will not enjoy the life we envisioned for him.  It's a feeling of powerlessness and hopelessness.  It sucks the joy out of parenting and leads to sleepless nights.

I first felt this feeling when Lukas received his diagnosis at age 2-1/2.  I had contacted my pediatrician with concerns about excessive drooling, and after speech and occupational therapy evaluations, I learned Lukas had significant delays in expressive and receptive speech and fine motor skills.  I rolled with this pretty well, although I was surprised.  Lukas was my early talker and walker, and I hadn't seen anything out of the ordinary.  Then my pediatrician asked me to come in to talk, and told me she suspected Lukas had autism.  She recommended an evaluation by an developmental pediatrician.  My immediate reaction was denial; no way was this outgoing, happy little boy autistic.  

But then the diagnosis was confirmed, and The Fear had me.  I ruminated on everything from his potential ability to drive a car to his future love life.  I saw a future where Lukas would never live independently or have the satisfaction of meaningful work.  I finally recovered by building an action plan and focusing on what I could control.  No, I could not guarantee my son would have a girlfriend someday; however, I could obtain services through Early Intervention, make a list of short-term goal ideas for his first IEP, learn to write social stories to help change undesirable behaviors, and battle the insurance company to get coverage for his therapy.  

Banishing fear let me return to my top priority - loving my boy.  Knowing I was working hard to help him progress let me relax and enjoy his cuddles and his silly sense of humor.  Over the last four years, I have seldom felt sad or hopeless.  As an active member of Lukas's IEP team, I worked the plan, and I saw gratifyingly positive results.  But now that things are not going so smoothly, I have lost confidence.  I am back to envisioning worst-case scenarios and battling despair.

If I am to recover from this emotional setback, I need an action plan.  The first step in that plan is admitting my fear.  And now that I've done that, I can see the concrete actions I can take to fix this.  Lukas's annual IEP review is coming up.  I can prepare by writing down my concerns and sharing them with the team in advance.  I can brainstorm some ideas to bring up in the meeting - does Lukas need someone to help keep him on task during MAP testing?  Can homework be reduced to cut down on the time we spend?  I can contact Lukas's developmental psychologist for help with school strategies.

I can also take a cue from Lukas himself.  Although his disability can make him anxious about things most people wouldn't question, like checkups and haircuts, he can be brave about things even adults fear.  Lukas will happily jump aboard a roller coaster again and again, never questioning his safety as he hurtles up and down the hills.  Life with a disability is a roller coaster, filled with ups and downs.  I just need to hold on, have faith, and allow myself to enjoy the ride.

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<![CDATA[A Sporting Chance]]>Sat, 11 Oct 2014 21:55:29 GMThttp://bspn-batavia.org/blog-exceptional-life/a-sporting-chancePicture
In general, I approach my life as the mom of an autistic son with confidence and energy.  I spend a lot of time learning what I can about autism, the best way to help Lukas progress, and the best way to advocate for his needs.  I seldom hesitate to take both of my boys to new places or try new things.  Sometimes I'm sorry, but most of the time I'm glad I tried, even if the outcome is disastrous.

So it's embarrassing to admit that I haven't been very daring in the arena of sports.  As a longtime women's travel hockey player, I believe in sports for everybody.  Signing young kids up for sports is standard operating practice in our area.  I myself am no stranger to the world of kids' sports.  My older son, Marek, has tried everything from tennis to soccer to springboard diving.  I coached Marek's little league team last summer, a team for which Lukas could have played also, had I signed him up.  And midway through the season, Lukas himself asked why he wasn't playing baseball too.  I evaded his question by telling him I hadn't known he'd wanted to play, and that it was too late to sign him up.

The truth was, I'd never considered signing him up, because I knew it would be a terrible fit.  With Lukas in the lineup, my job as head coach would be doubly difficult.  In addition to providing instruction to 13 first and second graders, redirecting their fleeting attention and keeping track of position and lineup rotations, I would also have to be Lukas's mother, a very time-consuming job in itself.  On a good day, and focused on something he prefers, Lukas looks like any other first grader.  He socializes enthusiastically, speaks pretty well, and learns quickly.  On a bad day - when he's bored, tired, hungry, overloaded with sensory input or just generally out of sorts - he can be whiny, clingy, and incessant in his demands.  Baseball is a tough sport for many typical kids, and I know a slow-moving, analytical game like baseball would be the worst possible choice for Lukas.

Even knowing this, I feel guilty and conflicted.  Despite my belief that a child with a disability should have the same opportunities as a typical kid, I know that the activity scale weighs heavily in Marek's favor.  Most of Lukas's activities have been special-needs oriented.  He attends Haley's Playground and Buddy Break playgroups.  During the summer, he goes to Fox Valley Special Recreation Association day camp.  There have been music lessons, special needs swimming lessons, and therapeutic horseback riding sessions.  But only Marek got to attend Lego camp; the Fox Valley Robotics website said special-needs kids were accepted only if a parent stayed to assist, and the thought of paying $110 for the privilege of shepherding Lukas through nine hours of Lego robotics was more than I could bear.  Marek has participated in sports consistently from age two on, while Lukas, now 6, has had few experiences in youth athletics.  Those experiences have ranged from mediocre (a soccer skills group that failed to hold his interest) to excruciating (a basketball class where he could not tolerate the echo of the ball bouncing in the gym).

I am nothing if not a perpetual optimist, however.  Lukas keeps making incredible strides each year, blowing away the goals set by his IEP team and his private therapists.  This summer, he attended a whole week of Naperville Safety Town without an aide, and he progressed nicely in regular swimming lessons.  With the memory of the baseball guilt still in my mind, I was ready to try again with sports this fall.  Lukas chose soccer with great enthusiasm, and I enrolled him in the instructional league through Batavia Park District.  Knowing the quality of the All Star Sports coaches, I did not request an inclusion aide as I have in the past.  I think I was feeling cocky after Lukas's successes with Safety Town and swimming.  Sometimes I read the glowing IEP updates and think, "He's practically typical."  

The reality of soccer has proven my folly.  From the first session, Lukas has been unable to sustain interest in the game, and he frequently becomes despondent and exhausted.  Seventy minutes of anything is difficult for him; seventy minutes of a game that requires focus, quick thinking and teamwork is excruciating.  I congratulate myself on the choice of instructors - the coaches have been nothing but encouraging, patient and kind - but soccer is clearly not the sport for Lukas.

I have to hand it to my boy, however.  Despite the whining, the demands that he be called by a different name, the crying, the lying down in the middle of the field, the claims that his legs don't work any more, Lukas (or Ethan, as he requested he be called today) has not quit.  Every Saturday, I ask him if he wants to play soccer today, and every Saturday, he comes back for more.  Like me, he's a perpetual optimist.

And so I embark again on my quest for the right sport.  I think gymnastics might be good.  Lukas is strong and flexible, and he is drawn to gross motor activities like monkey bars and climbing.  The trick is to find the right place, the right class.  We tried one gym, but found that their 80-minute boys' class was way too long.  Another gym had a 60-minute class, but gave discouragingly tepid responses to my questions about their ability to manage Lukas.  A gym in St. Charles thinks Lukas could do well in their regular class (they have a special-needs class too), but I'd rather not drive that far.  I've heard good things about the Batavia Park District classes from another special-needs mom, and I can request an inclusion aide to increase the odds of success.  That will probably be where I start.

Maybe I'm crazy, but I think if I step up to the plate enough times, I'm bound to hit a home run eventually.

I would love to hear from other parents of special-needs kids about your experiences with extracurricular activities.  Have you hit a home run and found a good sport or activity for your child?

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