Speak up!

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As a kid, I thought my mom the most embarrassing person hands down, second only to my dad and that’s because he would fart in public.

He would walk up a step, pause and shake his leg like something was going to fall out of his pant leg and out would come the loudest fart. My mom would turn around embarrassed and my sister and I would fall over in belly aching laughter. I swear sometime I think he wished we were boys. My dad was and still is one of the funniest people I know, but in a crude humor sort of way. No wondering where I get that from.

My mom was the embarrassing one, or so I thought at the time. She was the one that spoke up all the time and I would cringe and slump into that “trying to be a wallflower stance but can’t because my mother is telling you off” stance. And she would tell anyone off, politely. It could be the cashier who didn’t put the money in her hand and threw the change on the counter, the mechanic who tried to rip her off at the garage, or a teacher who said something in a way they shouldn’t have.

Back then I just thought she was a fly off at the handle kinda gal, but now I realize, my mom was our advocate. All parents become advocates at one time or another. You have to be an advocate when you need to, don’t want to and probably shouldn’t but for the sake of your kid, you put it all out there.

Advocating is saying all those things out loud, you often think in your head, with a filter, of course. It’s trying to keep your calm and trying even harder to stick to your guns, especially when people tell you “that’s not what they do here”, “he’s not eligible for that”, and “that’s just not possible. I think it is especially difficult to advocate for people that can’t tell you what is going on or how they feel, whether you are advocating for an adult or a child.

My crash course in advocating came this past fall when my father was in the hospital. I have never been a soft spoke or quiet person by any means, my husband will confirm, but advocating is a completely different ball game. It’s not as easy as yelling a couple abrasive words to the driver who won’t give you 20 seconds to cross the street, even though you are pushing a stroller, carrying one child and have another attached to your leg, holding on as you were the tree trunk of like. Advocating is completely different.

There is always a trigger that sets it off and on this day, my voice found it’s trigger. My dad has congestive heart failure, liver failure and kidney failure, we found out through his past almost two month stint in the hospital. Luckily it was in one of the best hospitals in the nation, where the doctors and nurses worked effortlessly to save his life. But before he was transferred there, it was not such a great situation. He had had an incident at home, got up in a state of mass confusion and dementia and hit his head on the night stand. My mother found him kneeling near the night stand, blood everywhere. By the time they got him to the hospital, he was unable to speak, couldn’t say his name, didn’t know where he was and was slurring his words. They claimed he had a stroke, but something wasn’t quite right.

Nothing added up.

Not that I also have an inner nurse voice, but I have a husband who is a “male nurse” and great at his job. When I went to see him the first day, he was out of it. They explained this was normal for a stroke victim. The second day, he was the same. I think he knew I was there because he moved his head in my direction when I spoke but for the most part, he didn’t open his eyes and my very talkative dad was completely silent. Something didn’t seem right.

When I went to talk to the doctor, whom my mom explained was “nice”, I found my trigger. When I asked what was going on with my dad, the doctor explained the belief is he had a stroke, there is no telling how long he could be like this, and (*trigger time*) she continued, “The only thing different that could be done was we could have given him a daily dose of aspirin”. Yes, here is my dad laying there helpless, completely out of it and this doctor was ready to give him ASPRIN.

As I walked away, I wasn’t even sure I heard that right. Even the nurses, standing a couple feet away, looked and silently about shrieked in horror. I was not about to let my dad, lay in a hospital where the doctor in charge thinks the only thing they could have done different was give him aspirin. To make a very long story short, a couple very demanding and persistent phone calls later, my dad was transferred to another hospital. He didn’t have a stroke after all, it was the toxins in his failing liver. Without the hospital we transferred him to, we would have lost my dad without a doubt. I not only learned how to navigate the system and the political, insurance and medical jargon that comes with it, I learned what it was like to speak up for someone that cannot speak up for themselves.

I learned to put in to action, all the things my parents had taught me over the years.  My parents used to tell my sister and I constantly, you can stand there and let injustice happen, whatever it may be, you must speak up. I guess they taught us well. I also learned to speak up quick when we learned our boys had Autism. It’s so easy for them to be misunderstood.

You’ve got the stares and comments. Trigger.

The School. Trigger.

The people that try to tell you what can’t be done, what won’t be done and how they think they know your sons better than you. Trigger. Trigger. Trigger.

Advocating and speaking up, never comes with a prize. It always comes with a price.

A price you have to be willing to pay for your children. It’s tiring. It’s hard and even though I know it has to be done, I’m always still hesitant when I do it, but I do it. I organize my thoughts, sometimes. Speak with conviction, I try to. But speak up, always. I may not always be right, but I will be the first to speak up about something that doesn’t feel right.

My mom had a mouth, opinions and she would used them both frequently.  My mom wanted her kids to know, when something isn’t right, SPEAK UP. She also wanted us to know, she had our backs.

And now, 39 years later, I get it, I finally get it.

What dreams may come

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At one point, almost 4 years ago, I had another blog and wrote this post, which now, makes more sense, makes meaningful sense.

My husband’s sport to play, watch and breathe is baseball.

He played baseball throughout his school years and used to, during his not as chronically injured days, play on a Sunday Softball League. So when our then 5 year old was finally old enough to be signed up for t-ball, you could only imagine my husband’s excitement. And when it came time to hand out uniforms, it warmed my heart to hear him say, “I want to be number 5 like daddy”. Upon sensing “Steve’s” excitement to play, my husband enthusiastically signed up to volunteer, and who could imagine,not even himself, that he’d end up being the head coach.

He researched drills and coaching practices found on blogs ironically titled, Pray for Rain.

When “Steve”, being the youngest 5 year old on the team, took to the grass for his first practice, his age became apparent, swinging the bat like it was a lead weight and running after balls like it was a game of tackle football. And when he took to the field in his first game, what became apparent was his sense of humor and non interest in the sport. He burped and joked to the other kids on the bench. His zig-zag run to the bases became a dance of shuffling dirt. The outfield was his own personal sandbox. And his turn up at bat was more like he took stage and the spotlight was on him. While one of the coaches was giving him pointers and trying to get him to look at the ball, showing him the correct way to hold the bat, his head was turned in the other direction, yelling jokes to his teammates on the bench.

He loved every second of it. And isn’t that the point?

Where we look at sports as a way to nurture dreams, maybe the message is just that, let your kids be kids.

I swam my entire life from the age of 4 until I graduated college. Swimming was and is in my blood. I wanted to be an Olympian and break multiple world records. The walls of my room were adorned with pictures of Mary T, The Albatrosse, and pages I’d update with goal times above my bed, as if the success would come to me in my sleep. Even though I had a couple failed attempts at making the Olympics, I was successful. Swimming took me around the world, provided me with a great education to one of the best schools in the country and provided me with many experiences I carry with me today.

Swimming shaped me into whom I am, as a friend, a wife and a mother.

My dad always recounts my start in swimming, at the age of 5, the same age my son is now, walking down to the pool in the apartment complex so I could learn to swim from the life guard who had “taken me under her wing”.

30 years later,I still remember her face.

He also recounts with vivid description and expressions I’ll never forget, my first experience with earning ribbons and winning and losing. He says throughout my swimming career, especially early on, I was in the moment, enjoying life and enjoying swimming. And he’s right. I can’t recount a lot of the experiences I had in swimming, I remember making great friends, traveling to beautiful places and setting goals. I remember the successes and of course the let downs, but the emotion I get from remembering swimming is as clear as day.

I remember the feeling you get on a Saturday morning, when the air is just right, entering the cool water on the first warm up for a weekend meet.

I remember the smell of chlorine that often hung with me through out the day.

I remember what it felt like to achieve my goals, what it felt like to have dreams to chase and what it felt like to be involved. I lived and breathed swimming.

I never remember my parents pressuring me. Of course, when I realized swimming was something I wanted to do they encouraged me to stay committed and involved. But I never remember feeling like it was something I HAD to do, it was something I WANTED to do.

They nurtured MY dreams they didn’t create them for me. They didn’t base MY dreams off their own.

Maybe that’s the key.

When your 5 year old takes the field in a t-ball game, swim meet or soccer erase images of future Ryan Howards, Michael Phelps and David Beckhams from your head and remember that it is exactly that, your 5 year old taking the field in a t-ball game.

What’s baseball today, may be 7 card Poker tomorrow.

Watch your kids grow and develop.

Watch their interests change, their humorous side come out, introduce them to new things and let them become their own being.

Now at 8, almost 9 it is apparent that “Steve” may never be an athlete. He may not even like to participate in sports. He likes Lego club, building things, drawing things and creating things. And he excels at whatever he puts his mind to. If it weren’t for kids like “Steve” we wouldn’t have the Wolfgang Mozarts, Temple Grandins, or Andy Warhols of the world.

Find out what your child’s niche it and let them blossom into their own person.

And watch what dreams may come.

Sorry?

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When you find out my children have Autism, please don’t say “I’m so sorry”. (That is unless you are holding back a secret cure that only you now about.)

Be sorry if your kid hits my kid, you kid calls my kids names, you step on my toe or your daughter breaks my sons heart.

Be sorry if my parent dies, my house sets on fire, you run my cat over with your car, I fall on the ice and break my leg or my car breaks down. You can even say I’m sorry if I go to the hair dresser and she gives me a really bad haircut (and by bad, I don’t mean good. I’m not that old) . While I think these are acceptable times to apologize, our advocate would say, “A woman should never say sorry to another woman unless they sleep with their husband”. That would be a pretty fair I’m sorry.

My kids are Autistic. AUTISTIC.

Autism seems to be a dirty word these days to most people, but maybe I can shed some light on it here. What I have learned thanks to my good friend and my children is that Autism comes with super powers. Among many, my son, “Steve” can recall the smallest detail you didn’t even know existed, like the name of the boat and the date and time the boat that almost rescued the Titanic, almost rescued the Titanic. “Steve” can remember the details (colors and styles), names, dates and specific movies Transformers were in, even ones that were created before he was born. He can take a .05 second look at a pumpkin I was just about to carve and tell me why my design will fall apart. Which clearly I consider a superpower because in my head it worked out perfectly fine.

My son “Emerson” who I recently found out can count much better than I thought can take a quick look around a room and access with uncanny accuracy how many people are a room in less than 5 second, while he is having a serious breakdown, because there are so many people in a room. “Emerson” can also recall moments with not just facts, but emotion. Randomly, like they were yesterday. He also knows the long complex names of more than a dozen dinosaurs, even with his speech problem, and the category to which they reside.

And I know, claiming these traits are super powers may not be acceptable to some. I understand it’s ok my children have a disability and it’s okay for you  to understand my kids have a disability. I’m not trying to make them seem more normal. Besides, what is normal these days. If my kids had the option of being normal or not, I would pick not.

I’m just saying, “It’s okay”.

Sure it may come with many some not so desirable traits, but like I said before, Autism doesn’t define my sons. They aren’t “Steve” and “Emerson” those young boys with Autism. They are “Steve” and “Emerson” those brothers, those super cute brothers, if I may say so myself but those brothers, with that super cute bubbly sister.

And they are my kids, and my kids are awesome. No reason to be sorry about a thing.

Here are some other things I think you should try not to say to the parent of a child with Autism:

“How did that happen?”. Who knows how it happened. Ask me what’s it like. What is he like. Even ask me how did I find out. A friend suggested today, it’s even good to ask if they can help in any way.

“I had no idea.” Of course you had no idea. I don’t usually tell people and I forgot to left his, “I have Autism” sweater home.

“Oh, he’s not Autistic, they like to label everyone these days” I don’t even know what to say about this one. If you lived with my children you would understand.

“Holy shit! Really?” Yes, really! Would I make this up?And Why would I make this up?Sure having children with Autism make some things more difficult that shouldn’t be, like going to the store, going to the beach, taking a long drive, and getting ready for school in the morning. Every day can be a struggle and you never know when something might set off one of those undesirable characteristics, but every child and every mom has their challenges. When it comes down to it we are all in the same rocky boat of parenthood, some boats just rock a little more than others.

Please don’t be sorry my kids have Autism.

I’m not.

(Some people don’t know what else to say, so they say they are sorry, as many people have said to me. But that leaves me confused because I don’t look at autism that way, so maybe my posts and my blog will help)

Out-of-Stock

As I walk down the aisle of the grocery store, I realize, maybe this wasn’t a good idea after all.

 “Grace” is singing and twirling and doing cartwheels, oh and one of those cartwheels almost took out an elderly woman with a cane, I kid you not. And as I search the shelf for my favorite type of  Hummus, I very hesitantly look over, to a rustle I hear on the ground and “Emerson”, yes, “Emerson” the 4 year old has pulled “Steve” the almost 9 year old to the ground and they are fighting. Well, “Emerson” is riding him like a toy shop pony that I just slipped a 50 cents into for some entertainment.

Whose kids are those? Get them off the ground this instant! I feel like yelling and then I remember they are mine.

All mine.

And as summon “Grace” back to the cart with one of those,”do another cartwheel and it will be the last cartwheel you do look” which obviously didn’t work because she did another one (lucky Wegman’s is big), I bend down to break up the fight/rustle with dirt balls/slightly embarrassing show of brotherhood my boys have going on at my feet. Prying “Emerson” off of “Steve” is no task either. He strong like bull. “Steve” on the other hand, is tall and lanky and just under 5′ tall at 8 years old is floppy as floppy can be. Wind can blow him over. Anyways, wind or not, he is up, and “Emerson” is buckled in the cart, but now screaming, a murderous scream that can be heard throughout the store, while “Steve” starts asking me questions, questions to which either I don’t know the answer or can’t hear over the murderous screaming coming from “Emerson” so “Steve” starts talking louder….

“Mommy, what day is June 18th? Is it a Friday?” he asks. I think it’s January, I have no idea what day June 18th is. 

“Mommy, what day is June 18th? And What day is my birthday? What year will my birthday be on a Friday?”

So I go onto explain about leap year and how days change forward usually one day except on leap year two, not sure if that is correct but my reasoning sounds perfect in my head, and so does my explanation as it comes out, pretty good.

Way to go mom.

Until “Steve” starts screaming too, “What my birthday will be in April and then in May?” he is upset. “No, its only the day that changes, not the month”, I explain. But it’s too late. “I can’t believe my birthday will be in April, do we just skip March?” And I see where I made the mistake in my explanation, but it’s too late now.

And now it’s “Grace’s” turn.

She wants to hold the eggs, push the cart and she is fighting with “Emerson”, who had finally calmed down trying to get him to say a bad word. (“Emerson” has a speech impediment and when he says the word “Broke” it sounds as clear as day like the “F” word. I found out in the middle of an eerily quiet Target store, during a tug of war over the candy canes. Anyway, once “Steve” and “Grace” found out it was downhill from there.)

And I hear “Steve” yell the “F” word at the top of his lungs and I swear the grocery store shut down, the lights went dark and a huge spotlight came down from who knows where and everyone turned around, looked and gasped. And the mom, you know the one, dressed nice, hair in place, matching outfit, no stains on her clothes whose kids walk nicely next to the cart holding on? She turned around and went down another aisle.

And this sign flashed in my head, but it was neon:

ImageAnd then I turned around to see if I was on one of those shows, you know, like “pranked” and Ashton Kutcher would jump out and be like “I got you. You’re pranked!” And my kids would start laughing and it would be one big humorous joke. And everyone was in on it. Nope,that didn’t happen. And it never does. Not that I expect it too, but it helps to wish a little, or so I hear.

As we make it to the self-checkout, which by the way is a big self-mistake, I.am.fried.

But what the heck, standing in line waiting by the candy would be worse?or so I convince myself. “Grace” and I, yes. “Grace” and I, start fighting over who is going to scan the merchandise, “Emerson” is attempting a Houdini move and has maneuvered out of the shopping cart lap belt, which should be more like a cage with prisoner lock down for him, and “Steve” is pacing back and fourth across the 4 aisles of self checkout lines swinging a roll of clearance holiday wrapping paper like he is the only one in the store.

Without realizing it, but the time we have all the bags in the cart, “Emerson”, who I need a leash for,has made it half way down the walkway and it starting to run, so we start to sprint to catch him. Yes, sprint. I ditch the cart with “Grace” and “Steve” and get my fingers on his collar just before he hits the busy street In front of the store. And I exhale.

Kids-456 Mom-1. (And the one that counts, trust me, it’s the little things. Did they all leave the store alive and safe? Check!)

As we make it to the car and everyone is buckled in,I look back before getting in my seat and they smile, they are laughing and they are happy and I think, obviously persuaded by their cuteness and maybe by how deliriously tired I am, that trip wasn’t so bad.

Maybe next time…

Looking through a Fishbowl

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Yes. I thought it would go off perfectly and without fail.

Well, in my mind it always works that way. My kids sit quietly or at least “kid acceptable” quietly. I’m able to watch my oldest, “Steve” excel in something he loves and I clap, take pictures and get to bask in this moment of glory  just like the other parents.  Very unlikely. Only in my dreams. Tonight Autism reared its most beautiful and most undesirable face at the same moment in time.

What I didn’t mention in the last post was that we have three kids. “Steve” 8, who has Autism, “Grace” 6, who has the “why-don’t-I-have-Autism” syndrome (yes, this exists, trust me:) and “Emerson” 4, who has Autism.

Of course “Steve” did beautifully, he did his most perfect jumping side kicks, defense moves and punches. He was happy, smiling and so very proud of himself, which is a rare, very rare moment in time. When they awarded him his yellow belt, he pumped his fist and pointed to his yellow belt while looking at me, while I was standing outside, and smiled, one of the biggest smiles that will be captured in my head forever. Guaranteed.

But yes, you read it right, I was outside.

While “Grace” was able to sit and watch her brother, quietly, giving “Steve” and the dojo the respect it deserves, “Emerson” was not having it.

And not like just any 4 year old not having it, but an Autistic 4 year old not having it, to the point where the kids earning their belts become less of the center of attention and “Emerson” becomes the center of attention. Not the good center of attention, but that where parents look and stare with those “why can’t you control your child stares”.

“Emerson” was screaming about money. He had found two quarters in my car on the way to karate and that was all he could think about. He bought them in the dojo, which I didn’t know. He began throwing them and when I took them he cried and shouted “Where’s my money?” over and over. “I want my money!” “Who took my money?” “Can you find my money?”

I tried to distract him with my phone and earphones, bad idea for a kid that has a hearing sensory issue. I put the earphones in his ears, they wouldn’t stay in, it was too loud and it was too quiet all at the same time.

And all at the same time I was nearing one of those breakdowns. You know the ones, the ones where you start sweating. I was trying to calm “Emerson” and watch “Steve”. But I ended up having to take “Emerson” outside, and not from choice. Outside, he began running around, throwing rocks-at me, yelling, screaming, banging on the glass. And asking for his money back.

And I stood there and looked in the glass at “Steve” and shared in his moment of glory but felt like a fish in a fish bowl, outside with “Emerson”, my blood pressure was rising. My inability to control the situation was frustrating. I wasn’t able to watch one son succeed and wasn’t able to help my other son in his most uncontrollable moments.

Whatever it was in the room that set him off, set him off. He goes to karate in the same place twice  a week. We have been there and sat and watched “Steve” and “Grace” during their classes. So who knows what it was. Maybe it was the crowd of people, the room was more crowded than usual due to testing week or maybe it was the quite, it was also more quiet, maybe with the anticipation of the testing, due to testing week. Whatever it was, he sensed it and couldn’t deal.

“Emerson” was having a tough time.

So was I.

Unfortunately, our tough times are chaotic and crazy and sense does not exist. Rationality does not exist. In the moment, I was rollercoasting (I made that word up), back and forth from  a high and such a low of emotion. And now, while I type this, “Steve” and “Grace” are quietly playing Minecraft online with their cousin, my husband is sitting here at the table, joining us after a long day of work and John is playing quietly on the floor with his dinosaurs. And in our home, we go back to normal, our normal.

And I’m exhausted.

And we will go to bed, wake up and another day happens tomorrow, of pretty much the same, but the question is, who will be up and who will be down.

“Steve”

Today my 8 year old gets his yellow belt in karate! Anyone that knows him knows this is a big deal. To find something he likes, away from the computer and to watch him excel makes me want to jump up and down and cry at the same time.

I won’t use his real name, for the sake of blogosphere I will call him “Steve” after Minecraft “Steve”, (I’m sure he would appreciate this). “Steve” was diagnosed with Autism, ADHD and Dyspraxia this past September. We always new he was great and different, but we just figured he was unique. But when the meltdowns became larger than life, or so he thought, and he started having trouble fitting in a school and his anxieties plagued him more that any parent ever wishes they would, especially for an 8 year old boy, we knew it was time to have him evaluated, for something. When we learned we were not surprised but at the same time, who wants to label their son. Who wants to take them to have them probed and questioned and made feel like something was wrong. I tried to keep it from him. “Oh every kid goes to a developmental pediatrician at one time or another” or “Oh most kids see a therapist” but when we started to have honest discussions on how he felt different. I knew it was better to tell him than to make him feel like something was wrong. After all, having a two way discussion about anything with “Steve” was hard enough, if it weren’t about this obsessions, if he was opening up to me it was time I was honest with him.

So one day during our discussion I sat him down and explained about Asperger’s and what it meant and how that applies to him.
And he sat and he thought and then he said, “What did you call it again?”
“Asperger’s”, I said.
“What?” he shouted with a smile. “You said Ass!”
“What?” I said.
“You said Ass! Mommy said Ass!” and then he got up and walked away and that was that.

And that was that.

The end.

No revelations. No questions. No ah-huh moments. Well at least not for him.

Autism doesn’t define our son. Autism does not define our sons… (another post:))

“Steve” is funny and talkative. He takes things very literally. For instance my parents live in North Wales, a town in Pa and he always wonders why it is called North Wales, when there are no Whales?! He came out of a test one day, part of his evaluation testing and I said, “You must have worked hard! I’m sure your brain is fried”. He shouted, “What? I can’t fry my brain! How would I get it outside of my body!”

True. This is very true.

“Steve” may not always look people in the face when they are talking or even not recognize them, but he remembers and notices everything. He has these amazing “passions” about certain topics to the point he becomes a total expert. Once it was the Titanic. He know everything about the Titanic there was to know, he even created models of the titanic resembling the ship before and after it crashed. And now it’s Transformers. “Steve” has meltdowns and believes everything I say and takes all my jokes to heart. He has trouble following social rules, talks loud when anxious and hates transitions. He also remembers everything about everything, especially the small details. He can recall everything I have said, even those promises you want to forget.

Every morning when I get up, I remember, “Steve” only eats pancakes for breakfast. I remember to prepare him for the day, in order to eliminate surprises.
I also remember to kiss him, tickle him and give him big hugs, even though he may squirm underneath. And I tell him my bad jokes and try to get inside his head, which is like an armored truck.
“Steve” is my wonderful, smart,beautiful son, who happens to have Autism.

Just like our other son. We’ve been blessed not once, but twice…..

Smiling through the Chaos

“Through the blur, I wondered if I was alone or if other parents felt the same way I did – that everything involving our children was painful in some way.  The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain.  The human heart was not designed to beat outside the human body and yet, each child represented just that – a parent’s heart bared, beating forever outside its chest.”
―     Debra Ginsberg

And like me, my children’s emotions are so deep and sharp they leave them raw and exposed and in pain. Their heart beats on the outside. Something little to someone else is at the time, the worse thing that ever happened to them. Something happy is at the time the happiest moment and a memory is like reliving a moment. My husband and I didn’t plan for this piece to our puzzle. At times we welcome it, at times we don’t understand it and at times we absolutely despise it and the challenges our children face. The challenges some people may never understand and some people don’t want to understand. But we know it’s brought us the most amazing, funny, smart interesting, loving children we could ask for. On a daily basis our life is a roller coaster they show us more laughter, love, craziness, sorrow, pain and confusion then we could experience in a lifetime. But through it all we are smiling through the chaos, this chaos called Autism.puzzle