Come on over :)

Hello to you…

If I were a more tech savvy girl, I would not have to up and move.  I know there once was a way to keep the blog but change the name but, being the old fashioned and stubborn girl I am ….it eluded me.

So, I am going to stay on wordpress but am blogging under “Wisdom from the Sisterhood”.  Some of you have already come to visit…thank you.  I love the community we have here, I love what I learn from you all and I love the sharing that we do.  So don’t be a stranger, come on over.  And, you know, if I could serve up some cupcakes to you…I sure would.  I will put up recipes though :).

Hope to see you sooooon!

j

Oh so true!! :)

Oh so true!!  :)

This is not my art, I found it on Pinterest, but I love it and I am sharing it because I think it’s a good thought to remember. If anyone wants it taken down, just say the word. It’s just so lovely to share the good stuff.

Autism Awarenes: Yeah, it’s autism. So what?

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Today was our beach day.

I was trying hard with four children to get out the door by 7:30 a.m.  We were off to Jellybowl and there was still a bit left to do. I had three kids plus one friend to get organized, sandwiches to make, a dog to feed and a cat to appease.  The kids needed to get dressed, remember their rash guards and beach shoes and mom needed to remember to find the sunscreen, pack chairs, gather enough towels, bring clean comfy clothes for the drive home and enough drinks to keep everyone hydrated (but not too many since I would need to  carry them all up and over the train tracks).  I’m pretty good about the chairs and towels but I have forgotten the sunscreen before and it is never pretty.  I didn’t grow up using sunscreen so it is not top on my list.  But today I have been entrusted with a friend’s child so I can’t mess that one up.

Ok, I digress.  Away from the sunscreen and back to my point.  This is about autism.  Really, it is.  Just wait for it…

So in the middle of the chaos after I have just finished cleaning up the zucchini bread mess the dog left in the kitchen (because we did not adequately protect the zucchini bread my daughter made from the food obsessed labrador) and I am in the middle of brushing my teeth when my fourteen year old comes in to my bathroom to finish drying her hair.  It’s all good.  We co-habitate well and we share pretty well too.  And, at the same time as my daughter begins to unravel the cord on the hair dryer, my twelve year old comes in to ask if I will tie his swim trunks.  He is all about being naked at home and not ashamed of his body in our halls but being on the beach and losing your shorts is an entirely different story.  He wants to be certain his shorts stay up.

With my toothbrush in hand and the toothpaste slop dripping off, I ask him to wait a minute.  He stands there patiently, waiting pretty well and then his sister does this thing she has started doing.  She is fourteen, he is her little brother and the really neat thing I see that morning is that he is just her brother… before he is her autistic brother, and she does this thing.  She steps in to help in.  Without a word, without a huff or complaint, without announcing it to me and before she plugs in the dryer she instinctively reaches down and, in a motherly fashion beyond her years, she ties his shorts.  He says thank you and goes on his way.  Without fanfare, she asks, “Isn’t this autism day or something?”  I finish brushing my teeth and tell her, “It’s autism awareness day.”  It’s a quiet conversation between us.  I tell her what the world is doing.  She asks what we are doing.  I tell her we are going to Jellybowl.  I tell her she can wear blue if she wants to.

I smile quietly to myself so that I don’t shine too much light on it.  This is all normal for her now.  I realize as we are speaking to each other that…. autism is natural to her.  Autism was never really part of her existence.  Well, it was and it wasn’t.  Everything about autism is familiar to her but it just never had a defined name.  It was not applauded or hated.  It was just us and, because of that, autism is different to her than it is even to me.  It was just her little brother.  We never spoke about autism or being less or giving him special privileges.  He was just her brother and she treated him just like a brother.  She never asked what was wrong with him, he was just part of her world and she just accepted who he was.  His value was simply equal to hers and her other littler brother.  Yes, he might have been quirky or strange at times but it was normal to her.  He is simply the older of her two little brothers.

She was twelve before she ever spoke the word.  She was twelve before she ever asked what autism was.  She was twelve before she asked if her brother was.  I had books on the shelf and she was helping me organize them.  Actually, being the girl she is, she asked if she could organize the shelf.  When she was finished, she asked, “Mom, is my brother autistic? You have a lot of books about autism.”  And, that was the beginning or her understanding and maybe even putting together the pieces of her memories.  It wasn’t a big conversation.  I think I said something like, “Yeah, he is.  But that doesn’t mean we treat him any different.  We expect as much out of him as we do anyone.  He is just as capable as any of us and just as intelligent.  This doesn’t change anything.”  Her response, in that oh so lovely twelve year old tone, was something like, “I know, Mom.”

And, she is the sibling.  She is the next generation.  She is amazing.  She knows autism on a different level than most and it is just part of life.  It is neither less nor is it more.  It just is.  She is the awareness others seek.  And, there is little fan fare.  We don’t hang banners, we don’t do walks, we accept and love it and bring it to the world in our quite way and when others ask, we say, “Yeah, it’s autism.”  And, they say, “That’s autism?”  And, we say, “Yeah, it’s autism.  Yeah, that’s what it looks like.”  It looked different at three than it does at twelve but, yeah, that’s what it looks like. It was a lot crazier at three and at five and at seven than it is at twelve but he is still himself.  Autism is part of him but it is not all of him.  Yeah, it’s autism but it’s more than that too because he is more than autism.

My daughter is a straight A student who has an IQ that mine never ventured anywhere in the vicinity of and I have great hopes for her.  She is remarkable and I hope one day that because autism is no natural to her that she will be the awareness in her generation that says, “Yeah, it’s autism.  So what?”  And not the kind of “so what” that says we don’t care about your needs because you are not like us but rather the best kind of “so what” that says, “What’s your point?”  The kind of “so what” that says we all have the same value and WILL be treated equally.  And the acceptance that follows the awareness begins with her as a role model for autism’s “So What-ness.”  By birth she has become an autism ambassador but, the really cool thing, is it is so natural to her…she doesn’t even know it.  She simply accepts it as normal.

I hope she becomes a scientist or a doctor or the POTUS and with her strength and her ability I hope she sets the tone for her generation to begin to see autism through new eyes.  Her kind of eyes that see iridescence rather than a lessening of value.   In my biggest dreams (mine and not hers I have to tell you, LOL) I imagine her becoming a doctor who works with kids.  And, with her understanding, I imagine her telling these new parents, “Hey there.  Yes, I do have the diagnosis.  We have found that your child is a bit iridescent.  Yeah, you’re right, he/she is going to be quirky.  It’s a kind of quirky sparkle that you may not be used to and you may need some support with it.  I know, it won’t be easy and some days will just down right suck but, take heart, these iridescent kids are crazy brilliant.  You just have to be patient.  Part of their brilliance gets stuck in their sparkle and it takes a little longer for these iridescent kids to sort it all out.  Don’t give up and don’t lower your standards though because he/she sure is going to surprise you. OH, and hey…let me tell you about my brother.”

And, I know, not everyone will agree with me.  I get it.  Autism is different for everyone.  But this is my dream…that one day the awareness will be so internalized that no one will care about the differences, or the tantrums or the lack of eye contact because we will also have a plan of action, a path to follow.  I hope one day that people will understand more so they will point and blame less.  I hope one day play groups won’t gripe and complain about their inability to socialize as easily as others and teachers won’t feel they are doing favors or being slighted by taking these kids into their classes.  That it won’t take specialized training to prepare teachers for autistic students because teachers and school districts will be expected to teach all students together and equally.    And, when the world is trying to point fingers and lessen those with autism I hope she, and others like her, stand up with their young peers and begin a new generation that says, “Yeah, it’s autism. So what? It’s all good.  We are all the same.”

Autism: Telling The Big Secret

It didn’t really start out as a secret.  It started out as a form of protection.  It started out as a way to keep myself and teachers from lowering goals.  It started out as a way to keep him whole and to retain the innocence of being just another kid on the block and in the classroom.

We would not let autism define us.

But then it happens.  He gets older and you whisper the word to others.  You hush the doctors who might say it out loud and change him with those six letters.  Those simple six letters are harmless alone but, together, lined up starting with “a” and ending in “m” are some of the most powerful letters there are.

Those six letters can change people and not always for the better.  Those six letters can make a parent expect less and make a teacher and a classroom lower standards.  Those six letters can make a school district close the doors of the classes the “other” kids use.  Those six letters can confine a child to lowered goals and expectations.

So, naturally, wanting my boy to be seen as just another kid, I have sheltered him from the words, the label and the baggage that are carried in those letters when fully assembled.  I have spent ten years, making sure my boy was something more than a giant, red letter “A” emblazoned across his shirt.

With, that said, as he has just reached his twelfth birthday, I have also come to understand, I cannot keep hiding the word.  It has jumped out on more than one occasion.  It has made me fumble and jump myself in order to contain it before it does any damage.

I knew he and I needed to have a conversation but, that morning at my computer, I didn’t know I was going to tell him.  It wasn’t something I had planned or spent time choreographing.  I had started to wonder, or fret as I sometimes do, over how I would let my son know he is autistic.  He is getting older.  He is more aware.  I knew it was coming and, at some point, I would have that conversation with him.  It didn’t need to be immediate.  It was more of a “one day” kind of of thing in my planning mind but I knew it was on the horizon.  I also knew I wanted it to come from me and not some kid on the playground.

That morning when the moment found me, I had not chosen words yet and certainly had no strategy or back up plans.  And, even as it was beginning to happen and I could see it unfolding at my desk, I still had nothing.  I thought to myself and wondered, “Is this really happening?”  I was nervous, wondered how I would say it but I also got the feeling, what I was being given right then was a God moment.  It’s like when someone gives you a freebie and you don’t have to even work for it or create it on your own.  A moment of grace and light bestowed upon you directly from God’s own hand that, if you are smart, you should embrace.

I was actually watching this basketball clip about an autistic boy who had been the manager for his school basketball team.  I am sure many of you have seen the clip.  They’re at a basketball game and the coach tells the boy to suit up.  It’s a nice gesture and the boy and his family are thrilled.  Then, in a quirky turn of events, not only did the coach have him suit up, he also, in the last four minutes or so of play, puts the boy in the game as a real player.  The boy goes in, all smiles, and at first he misses a few shots. But then, he starts making these crazy three point shots.

Like I have said.  Many of you have seen it.  It is unbelievable.  Crazy good stuff.  The boy ends up making like twenty points in the last four minutes of the game and the crowd goes absolutely wild. It’s a thrilling moment for me, as a stranger, and I can only imagine how his family and friends felt.

At the time, and in my kitchen, I was preparing a presentation on autism.  I wanted to show the other side of autism that displays its magnificence so I was checking some clips.  My son, who was eating breakfast in the kitchen,  hears the crowd going wild on the computer and asks what it’s about.  So, I took a deep breath, embraced the moment and told him it was about a boy who is autistic who does great things.

Then my son asks the question that I have dreaded, waited for, feared, “Really, Mom? What is autistic?”

I have lived for the last ten years with autism as part of our reality but I have not let it crowd us, become us, overtake who we are.  It has simply been a point of reference for us.  It is spoken about in IEP meetings and with teachers but has not been allowed to define or change the boy.  I spent ten years protecting him from the big red “A”.

The moment I had waited for was here. I waited.  I feared. Then, I gathered my courage and I spoke.

“It’s when your brain is wired differently and it makes you capable of doing great things. Some really great people like Einstein were autistic.” Yes, I know the jury is still out on whether Einstein really was but, I did not have time to research and split hairs….so I went with it.

And, my boy, as only he can, says without skipping a beat, “Wow, I wish I was autistic.  Mom, could I be autistic?”

I could hardly breathe much less think but I took a moment and then, before I can even speak, my son adds,  “Hey, Mom, I’m Irish, Norwegian and Native American.  Am I autistic too?”

I smiled and I told him, “Yes, my friend, you are Irish, Norwegian, Native American and a little bit autistic.” The boys beams, smiles and like only he can, says, “REALLY? That’s cool mom.  I’m autistic.”

I smiled bigger than my face was made to smile and my mouth stretched so far it hurt.  The kids were all still in the middle of the getting ready for school routine so I held my tears for later.  I held them for the drive home after dropping off kids at school when I could let it all really sink in.  It was a God moment.  He presented me with an opportunity and, for once, I had the smarts to take hold of it and make it happen.  I could not have planned it better.  I had no strategy as great as this.  Even on a good day, I could not have dreamed this up.  It was a chosen moment and and it was perfect.  I had struggled over how I would tell him and before I could even construct it, it landed in my lap. The lesson for me, of course, is stop the fretting and really embrace the whole philosophy of “let go and let God”.

I had always wanted him to know who he was, fully, but without making him feel like something was wrong with him. I wanted him to understand who he was without that knowledge somehow making him feel like he was less.  Autism has made him such a gift and a blessing and I wanted my words to help him to understand the gift that he is to me and everyone around him.  I wanted him to feel like he was more and I had been able to preserve that life for him with the moment that followed the basketball clip.  One day I will need to thank Jason McElwain for being so remarkable and his coach for being such a brilliant and courageous, trail blazing man.  Both of them provided me with a level of grace I would never have found on my own.