Mozart, Picasso & A Princess

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Dear Friend Who Googled "I Wish I Didn't Have Aspergers" 

Hello. My name is Becky.  I'm a special education teacher by trade, but first and foremost, I'm a mom.  I have a son who has been diagnosed with Asperger Syndrome, along with Sensory Processing Disorder, and a few other things.  

That being said, all of that means that I understand my son's Asperger diagnosis.  I don't want you to think that my son's diagnosis means I understand you.  I used to think that, but I've learned that when you know one person with Autism, you know ONE person with Autism.  Everyone's diagnoses affect them so much differently.  

I know that a lot of life is frustrating for my son.  I have met other people with Asperger Syndrome who say that life is frustrating for them as well.  I can imagine that you feel the same way.  I know it's hard to watch my son try to function in settings that are not designed with him in mind - large groups, excessive noise (even if it doesn't seem excessive to me), people who ask rapid-fire questions, lights that blink, a room with lots of sounds.  The developmental pediatrician, the psychologist, the therapists, and his regular pediatrician describe him as the kid in the group who has to work the hardest to keep up.  No wonder he comes home from an outing and just "crashes".  I know that, theoretically, you learn coping skills as you grow to make things a little easier for yourself.  I know that when things are easier, it does not mean that they are easy.

There are many different aspects to each person's diagnosis, and I don't know what yours are.  I don't know if you struggle with noises or if people speak too fast.  I don't know if you can do math extremely well, or if reading and language arts are easier for you.  I don't know if you do OK in social settings or if you avoid them at all costs.  

I do know, that by googling "I wish I didn't have Aspergers" you came across one of the most supportive groups of people you'll ever find.  I hope you have a great support system around you - friends, family, maybe educators, maybe people in the workplace.  But maybe you don't.  If you need support, we're here.  Find us on Twitter, Facebook, in the blogs.  Don't be afraid to let someone know that you need support.  As parents, we're genuinely interested in your well-being.  As parents of kids with special needs, we know, first-hand, the support you need on a daily basis.  And we're here.  

My son has Asperger Syndrome, like I said.  While I wish that I could fix a lot of the issues he struggles with, I'm not interested in fixing him.  See, there's nothing WRONG with him.  Nothing.  And there's nothing wrong with you either.  Nothing.  What there is, is a lack of understanding among other people.  We've had to go to battle for him more than once, with people who didn't understand the struggles he faces daily, or with people who didn't think he needs some of the accommodations that he needs.  A lot of it is that people just don't understand.  They think they do, but until you've worked with someone with special needs, or parented someone with special needs, you don't really understand what all is involved even in just a day in the life of someone with special needs.   We understand that it's probably similar for you - you've probably come across a lot of people who *think* they understand you, or think that you should be typical because you look typical.  You know what?  Being "typical" robs you of the chance to be UNIQUE!  

We wouldn't take away our son's Asperger Syndrome.  We work hard to get him the therapies he needs, to teach him the strategies he needs to be successful in his young life.  We appreciate his sense of humor that is often even funnier *because* of the Asperger Syndrome.  We recognize his struggles and are doing all we can to help him.  We approach life with him by thinking outside the box.  He doesn't fit into the "typical kid" box and so we can't approach life with him in "typical" ways.  We want to help him cope with the things he struggles with, and accept the wonderful gift that he is to us - and his Asperger diagnosis is a part of who he is, but it's not a bad thing.  He has Asperger Syndrome like he has light-colored hair, or like he has brown eyes.  It's a part of him and another in a long list of awesome traits that make him who he is and who we love.   

It's the same with you - the spectrum issues are part of who you are. While you can't change the diagnosis, or alter what makes you the wonderful person you are, there are many options to help you in areas where you feel you struggle.  I hope that you have a way to find some of those resources.  I hope that you have friends and family you can reach out to.  You were created to be uniquely you; fearfully and wonderfully made.  You are a unique and special gift and we hope that you can find peace in that.

One of the blessings that comes from understanding Picasso's issues is that we've learned to become grateful for the seemingly small milestones.  The victory is not in the destination, but in understanding how to get there.  Because really, the possibilities for where to go - the destination - are limitless, but you can't get anywhere if you don't understand the steps required to get there.

For our guy, the process of understanding the steps to accomplish something is very tough.  He struggles with seeing the big picture and then breaking it down into the necessary steps

To give you an example of what this means, I'll use the illustration of when you tell a child to get ready for bed.  You probably say something like, "Ok, it's time to get ready for bed," and your child will (happily or otherwise) get pajamas on, brush teeth, go to the bathroom, and climb into bed.  You may have more things in your bedtime routine, but the general idea is that the child will go and carry out the necessary steps to "get ready for bed".

Our guy doesn't function like that.  He hears "Time bed" and will head upstairs.  That's often where it ends.  If we're lucky, he'll go to the bathroom or brush his teeth, without us telling him.  But that's very infrequent.  This doesn't mean he's totally clueless on the daily tasks, but rather that we have to approach SO much of what we do (and how we make our routines) in a different way.

Our routines are very structured and set in stone - the ones that truly matter.  These routines are always done in the same way, in the same order, even so much as using the same tone of voice.  There are frequent reminders as we approach the time for a required task.  You can imagine, this takes a lot of planning and preparation on our part to give the 1-hour, 30-minute, 15-minute, 10-minute, 7-minute, 5-minute and 2-minute countdowns.  And these countdowns happen for many things - school, therapy, clean up time, bedtime, among others.

In an attempt to make our own lives a little easier, we'll often lay out the clothes for church on Saturday night.  We don't always do this - a lot of it depends on whether or not I have to leave early to get to practice with the worship team.  If I do have to leave early, then the clothes are all downstairs for the 2 younger kids, (our older son does great getting his own clothes) and everything is ready for them all to eat breakfast, get dressed, and head to church.  If I don't have to leave early, I don't worry as much about having the clothes out and ready as I'm here to help with all that on Sunday morning.  Saturday nights are the only nights we lay out clothes for the next day.  Sometimes he'll go to bed in the clothes he wants to wear the next day, but we don't lay out clothes for any other day.

Last night Picasso came downstairs.  He was wearing the clothes he'd had on (well, probably the second or third outfit of the day), plus a hat, a bag, something in his hand, and a pair of pants in the other.  I figured that the pants were part of whatever he was playing, so I didn't pay much attention.  I was sitting on the couch looking through some things when he plopped the pants down on the footstool.

I looked up, intrigued.  They were the nice pants that he had worn for Easter.

"Here's my pants for tomorrow."

Silence.  Willing the words to come into my head.  We hadn't discussed that tomorrow was church day.  We *had* talked about how it was Saturday, several times.  Daddy stays home from work.  We get to do some fun things.  But no preparation for Sunday because I knew I'd be home in the morning.

Yet here it was, Saturday evening, and he had pants for church.

"Thanks, Pal, great job!"  But really - WOW!  He's internalized a non-structured activity.  He thought and planned ahead.  All on his own.  The moment was noted forever, in my mind and heart.

But there was more.

"Should I wear a short-sleeved white shirt (while motioning to the spot where the sleeves hit on his arm) or the long sleeved nice blue shirt?"

Utter. Disbelief.

Usually I have to say no to the first few shirts he picks because he often picks shirts for opposite seasons (due to his sensory issues), or he'll choose a shirt that he cut a hole in, or he picks a shirt that is older that doesn't look quite as nice.  So the fact that he was coming with some ideas of decent shirts was fantastic!

"Um, either of those shirts would be just fine - or any (he begins to walk away; pretty sure I should stop talking, but I can't because I'm in awe) nice-looking shirt...with a collar.  Any nice-looking shirt."  He glances at me as he turns to head up the stairs. He replies - "K!"

I didn't even know how to answer.  I was so proud of this HUGE accomplishment that I probably would have said yes to a shirt with a hole (with a fleece on top) or any other shirt he brought down.

I can almost hear you - "You'd let your kid go to *church* in a shirt with a hole?  Or a shirt for the opposite weather?"  Yes.  In fact, he went to church in his pajamas one time - his oldest sweats.  See that's the great thing about our church - no judgment about what you wear to church.  They understand - or are beginning to understand - our guy's needs.  This helps a lot with a kid who has sensory issues.  We don't have to fight to get him to dress "appropriately".  Yes, I'd love if he would look great each time he went to church.  But the reality is that it's hard to get him INTO clothes some days, when the sweats and pajamas are what feel best. So the fact that he planned today's outfit, completely on his own - yup, he could have worn anything he wanted to wear.  (I'm really glad he wanted to wear something nice!)

And so he picked the long-sleeved blue shirt.  And he dressed himself this morning, and did not tuck in his dress shirt.  And he did complain about how the pants felt around his waist, so I suggested we loosen the tabs inside to make them feel better.  Maybe someday he won't complain about the tabs, but will ask for help instead.  But when something like the feel of the tabs used to cause a violent meltdown, I'll take the complaint ANY day, because he's using words.

We're not "there" yet - but really, who knows where "There" is?  What matters is that HE figured out part of the journey, completely on his own. And when you can succeed ON the journey, you'll get "there"!  No doubt about it!

Sharing this & reposting directly from 

Autism Positivity

This is their story & an amazing way to take just a bit of time to encourage someone who is struggling - and you don't have to have a blog to do so.  See below. 

A couple of weeks ago, someone somewhere googled “I Wish I Didn’t Have Aspergers”.  The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad.  She wished she could have answered.

We don’t know who it was.  We don’t know where he/she lives.  We have no idea if he/she found what he/she was looking for in that search.

We do know that search directed that person to a blog.  We do know the searcher clicked on it in an attempt to find what they needed.  And we do know enough about the challenges of autism to know that person is likely not alone in that sentiment.

So, we got to thinking.  What would we say to that person?  What if it was a kid, desperately trying to make it through tough years of intolerance and ignorance?  What if it were a person who might never stumble across the amazing voices speaking for autism acceptance?  What if that person thought himself/herself all alone?  What would we say about the present?  What would we say about the future?  What would we say about happiness?  And hope?

Each of us in the autism community –- self-advocates, parent advocates, friends and family, teachers, health professionals—we would all have different messages for “I Wish I Didn’t Have Aspergers”.  But likely we would all try to send the message that there is a brighter future and that friendship and support are out there.

We are asking every blogger in the autism community to write a message of positivity to “I Wish I Didn’t Have Aspergers”.  So that next time that individual (or another) types that sad statement into Google, he or she will find what they need – support, wisdom, and messages of hope from those who understand.

And – for those of you who do not blog but wish to join in – please post your positivity message to http://autismpositivity.wordpress.com

Please join with us on the last day of Autism Awareness/Acceptance Month – April 30^th – in a flash blog of autism positivity.

To participate:

This Autism positivity Flash Blog Event is the brainchild of Thinking About Perspectives, a group of bloggers committed to increasing autism awareness and acceptance via open and respectful dialogue.  We are:  30 Days of Autism, Outrunning the Storm, The Third Glance, Aspie Kid, Flappiness Is, Quirky and Laughing, Life on the Spectrum, Fairy Tale Forgotten, The Aspie Side of Life, and Inner Aspie.