At The End Of The Day….

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There are some days that my heart breaks selfishly a bit. Days like today. As A2 gets older there really are no play dates. While kids are generally kind, there are limits to their patience. It’s hard to figure out how to play with another kid who wants to stand at the bottom of the water slide flapping rather than going down. His peers are now preteens and the adults that are close by interpreting for him, ensuring safety and cueing socially reciprocal behavior are going to inhibit their own wing stretching. So today, as I sat entering in my second hour in direct sun making sure my guy didn’t keep going past the “do not pass” safety barrier at the waterslide, I couldn’t help but notice the world around us. I had nothing else to do but try to clear my mind of things that poke at my side and wake me breathless in the middle of the night that were now tugging at the straps of my mom-suit with sunburned shoulders. I see the young women in their bikinis, laughing and hanging off of tattooed boyfriends and remembered a time where wondering if my thighs were firm enough or if my mascara was running were my biggest concerns. And at the time they really did feel like big concerns.  There are days….just like every other chubby middle aged mom…I just miss my youth. I watch other moms read their books and drink stealthy mojitos next to the pool as their kids run to them at rest time asking for $5 for a hot pretzel. The lifeguards are there to protect theirs while I stand knee deep in freezing water wondering what would happen if I tried to do the same. There are days….like every other mom of little ones…. I wish I could enjoy a day off near a pool where I didn’t feel like my purpose was to make certain my kid didn’t die. I see the moms with toddlers and infants on changing tables and laugh as I remember being in the same predicament with a wet, slippery cherub in a soaking wet swimmy full of poop and trying to carefully slide it down over a squirmy tushy  not realizing the sides rip off for easy disposal. Today I am trying to find a dry floor free of clumpy toilet paper wads to change an 11-year-old in a soiled swimmy and keep my fingers crossed that this  won’t be the last year I can squeeze him into a size large Huggies with Nemo on the back.   There are days….like every mom of infants…I just wish we were out of the diaper stage.

Once I shook the delirium of the midday sun and made my own mojito at home I felt less like I was crawling toward a mirage in the desert only to be disappointed by more sand.  I feel conflicted by my own selfishness. I know the bottom line is if he is still oblivious to his differences and is still filled with joy doing what he likes to do whether it suits me or not then we are still golden. And yet….I can feel like I have received a sucker punch to the gut when I watch pubescent girls walk quickly in cliques past him whispering and giggling.   I don’t know if my child worries about the same things I do or if he has crushes on girls or if he sometimes grieves his differences.  I hope not. That way I can keep my selfishness where it belongs…to myself.

But that’s the thing.  Don’t ALL moms go through this?  We have a sacred ground that feels like it is being broken if we say it out loud or admit to having a bad mom day.  Special Needs bad mom days and Typical bad mom days have a different script but definitely the same plot.  No.  I will never worry about my kid having a psycho girlfriend.  I will never worry about my child’s heartbreak of  being brushed off and losing social status. I will never worry that I did not raise him with morals or respect for adults.   I will never worry about whether or not weed will be his gateway drug to heroin.  And those things are equally as important even though there are days I would rather worry about those things.  Somehow it became not ok to admit to worry or heartbreak or disappointment for fear of being seen that we somehow don’t appreciate our children. I hesitate to share on these days that I must sit quietly for a little too long and think about things a little too much. I am weary of feeling somehow missing our old lives or having a twinge of disappointment over “what could have been” cannot possibly coexist with loving our children with all our souls or appreciating their uniqueness in all their flappy, pool water drinking ways.  See…because you know what I miss too some days?  My flat stomach with a belly ring that didn’t look like it was a way to deflate my abdomen. I miss not checking moles and worrying about sun cancer.  I miss not having to hire a crane to hoist my chest up in a bathing suit.  I miss drinking beer all afternoon in the sun and flirting.  I miss working 40 hours a week and actually being bored in the evening when I couldn’t find someone to go to the coffeehouse and play scrabble or see some local guy playing acoustic somewhere.  And I dare anyone reading this to NOT feel like they miss those things too sometimes and that they too would consider trading their situation in to go back for just one day…..and then realize there would be no way in hell.  Because we will never be the same…and for that the world will never be the same and that is the backward legacy that our kids give to us….as we gave to our parents.

I often wonder what kind of mom I would be in an alternate universe….and feel very selfish on the sad days. But ultimately…..autism or not…..I really don’t think I’d feel different from any other mom.

 

 

The Mending Wall

IMG_6047These wildflowers grow on a narrow strip of grass between someone’s property up against a century old stone wall and a city sidewalk near my home. There is a handwritten sign on a stake stating simply PLEASE DO NOT MOW OR SPRAY WILDFLOWERS. THANK YOU. While seeing them in full bloom one might wonder why someone would do that even when instructed to.

Today we were shaken again to our core. Today we were reminded again that nothing should be taken for granted. I am angry that again I feel afraid for my children when they leave the comforts of home.  I am conflicted because A2 is sick and at a time I should be saddened for 50 families and frightened at the fact that laws continue to exist that allow for permits for individuals to decide the fate of 50 people in one rain shower of shots. People who were given the right to exist with equal love are gone and we are all reminded there is still an opposing view.  But A2 is the kind of sick that makes his father talk in circles and makes me stone faced and logical. The kind of sick that sinks our instinctual fears as parents until the wind kicks up again and fills our sails to let us know it’s smooth waters soon. I can’t fear all things at the same time.

So I can stop to show you these flowers I saw today. And you can stop to see them. And we can all appreciate that someone stepped up to make sure that they bloomed to their full beauty for all of us. Please see them. Just for this moment. ‪#‎onepulse‬  

On the Eve of Your 11th year…..

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Your brother saw the ocean for the first time about a month before we knew you.  The expanse stopped him in his tracks leaving him silent and still.  The moment you were born 11 years ago today you cried and screamed and when they held you up for me to see I instinctively whispered your name.  You stopped crying, found my eyes  and you were silent and still and you took my breath away.  Your presence in our lives has been like seeing the ocean for the first time–beautiful and tumultuous and every day is like seeing the world in a way no one else gets to.  I feel lucky I get to be your mom.  Happy Birthday sweet A2…….

The Gorilla in the Room…..

There have been so many news stories, articles and commentary on social media about the tragic situation over the weekend that at this point I am fairly sure you would have to live in a cave to not have at least heard about it.  In case you do live in a cave, here is what I know about the situation with the little boy who fell in the Gorilla exhibit in Cincinnati:

  • He fell 10 feet into the moat
  • He fell 12 feet into the moat
  • He fell 15 feet into the moat
  • He was seriously injured but with non-life threatening injuries
  • He came out without a scratch
  • The gorilla rushed him but did not hit him
  • The gorilla approached him cautiously only after hearing him splash in the water
  • The gorilla did not intend harm, he almost seemed to be protecting the boy
  • The gorilla violently was dragging and throwing the boy in the water
  • It took 10 minutes before anything was done by rescue team
  • It took 15 minutes before anything was done by the rescue team
  • The boy had his hand in his mother’s back pocket to stay close and in a flash he was gone
  • The boy’s father crawled out onto the ledge to jump down into the moat
  • The person who filmed the footage crawled out onto the ledge to jump down into the moat
  • Eyewitnesses say she was on her phone and not paying attention until they saw him in the water
  • Eyewitnesses say the boy was gone in an instant and he was seen crawling out onto the ledge and was pursued immediately by family and spectators alike

From reading up….here is what else I know:

  • Jungle Jack Hanna supported the zoo’s choice to kill the gorilla because there was no other realistic option
  • A large part of the community did not support the choice to kill the gorilla and sees the tragedy of killing an innocent endangered animal because there were other options
  • A large part of the community ponders how in the world the zoo could have such an unsecured area that a child could breach it that quickly
  • PETA did not support the choice to kill the gorilla OR have him in captivity in the first place for our entertainment
  • A child slipping away from a parent can happen to anyone in an instant
  • The mother is completely responsible for the death of that gorilla, is a neglectful parent and clearly was not watching her child and should have him removed from her care to be raised in foster care.
  • The mother has received several death threats
  • A gorilla is dead and a boy  is alive

And lastly….here is what else I know:

  • A 4 year old boy is alive
  • NOTHING.  ULTIMATELY, I KNOW NOTHING.  AND NEITHER DO YOU.

Yes, its a tragedy no matter what.

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Not gorillas…..I know….but I own the image.

 

 

 

 

 

Day 21. T is for Teachers and Therapists.

Day 20 2016: T is for Teachers and Therapists

Running through Water

Day 20

Day 20:  T is for Teachers and Therapists

97. A2 has had a total of 97 teachers and therapists in his short 9 years. Some were hand- picked….some chosen by fate and luck of the draw. Some were published…lauded recognizable names….some were quiet presences of whom I cannot remember their names. Some have been with us for the majority of his life. Some have only jumped in for a blip of time in his almost 80,000 hours on this planet. Some were stellar….life alterers….some just showed up because they had to. Some interpreted my coolness or seeming indifference to them as being non-caring. Some recognized that I always had my child’s best interest in mind all the time and understood it was important for me not to be too attached for fear of losing perspective and not holding them accountable should his learning derail. All have had a permanent impact…

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Day 18. R is for Relationships

Day 18 2016: R is for Relationships (originally posted 4/2015)

Running through Water

Day 18

“Are you sure he has Autism? He’s so friendly…”. While there are more nuanced aspects now to the criteria, failure to develop peer relationships appropriate to developmental level is one of the defining and most obvious diagnostic identification for children with autism. Interest in people in general, desire for friendships and loving behavior can muddy the diagnostic waters and confuse people about what autism is and what autism isn’t. Disconnectedness, aloofness and lack of desire to be touched does not always translate as a lack of desire for relationships. The desire is there, the understanding for how that happens is not. It can just be easier to be by yourself. A1 can tell you that. Indiscriminate friendliness, hugs and kisses to those he loves and the compulsive desire to be around a lot of people doesn’t always coexist with developmentally appropriate social skills. A2 probably would tell you that part…if…

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Autism Awareness Month. G is for Genetics (and Guessing)

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G is for Genetics

I get asked often what I think caused my child’s Autism.  I believe it is completely counterproductive to even consider it until such a time that there is solid evidence.  They are here now. I love my kids fiercely. Our struggles would be the same whether or not we knew the ‘why’ part.

Infection in mother during pregnancy, vaccine accidents,  overweight in mother during pregnancy, gestational diabetes, inadequate iodine, diagnostic ultrasounds, prenatal stress, advanced paternal age at time of conception, pesticides both before and after gestation…I’ve read those all.  And they all have the same message:  “Dad….Mom (but more likely Mom)…you did something…IT’S YOUR FAULT.”   These theories are also part of what drives the Neurodiversity movement.  That is, that individual differences and biological diversity are a normal and natural part of evolution and Autism is no different, so it is not something to be treated. Behavioral disruption is misunderstood communication and all the comorbid conditions such as GI/bowel issues, intellectual impairments, mental health issues are just that. Something not related directly to Autism (a whole other can of worms within our community….).

Regardless of your belief system…there is only one thing we know for absolutely certain: NO ONE KNOWS WHAT CAUSES AUTISM.

To demonize parents who make decisions you would not necessarily make is also counterproductive. 

As parents we have an instinct to protect our children. When a parent watches the baby she knows slip away into a world of of silence or pain in front of her very eyes and no one can tell her why or really what to do..well….just take a moment to let that sink in regardless of your parenting/political/medical stance. I don’t have to agree, I just have to have empathy.

Here is what we do know.  There is a genetic component to Autism and it is likely paired with an environmental trigger.  Just like Type 2 Diabetes. You can’t develop this unless you have the genes.  You make it far less likely to get it if you get your butt up off the couch, exercise regularly and do not eat like a regular American.

We just are not 100% certain what that common genetic component or the environmental one in Autism.  I am not going to even pretend to know anything about genetics. The best I can do is tell you:

  1. Picture a city with 20,000 streets.
  2. Now lets figure out which streets have public mailboxes, one way traffic, standard poodles and single mothers living on them.
  3. Only some people who travel down those streets buy mandarin oranges (not regular naval) and we need to find those people.
  4. (But what about the naval orange buying people!? Those are a lot like mandarins!)

That is what it is like trying to figure out the common genetic factor and environmental trigger together. When I had a discussion about this with a pediatrician 12 years ago she said to me: “Autism is caused by a genetics. Period.  To consider anything else is ridiculous.”

I sat for a moment and thought about that.  I then I wondered out loud, “Can you tell me another genetic epidemic in history that unfolded like Autism?” Crickets. I’m a pretty moderate parent…however it is no wonder that many parents are suspect of the medical system with that kind of definitive statement when the bottom line is WE DON’T KNOW.

Does it mean my husband and I have Autism? No, not necessarily…but who knows?  If we do carry that genetic material and we combined it….we no more caused the autism than we “caused” their big gorgeous brown eyes or fact that they may need to wear glasses one day. Their eyes could have almost just as easily been blue instead all things considered.   And if environment did play a role and all the Fruity Pebbles I ate during pregnancy kicked those  genes into overdrive as the environmental trigger, there is not a damn thing I can do about that now.

I have never felt the “shame of blame”…and I don’t think any parent should.

We are wired to procreate and continue population.  We can just hope that this kind of information will one day find the link that allows children who suffer in silence or physical or emotional pain to grow to be independent and happy…just like all parents want their kids to do.

12 Times my Kid Was Way, Way Cooler Than North Carolina

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A1 got off the bus last week and immediately came to find me.  This is unusual as it is typically the other way around.

I hate riding the bus.  I try to keep my headphones on so no one will bother me….but they even make fun of that” he blathered.

A1 is not one to seek out trouble, but he has no ability to not verbally respond to it when it comes his way.  Impulsiveness and rigidity.  Such is the way of  ADHD and Asperger’s and as he gets older, he gets more and more aware of this but doesn’t seem to have the impetus to make it stop.

It wouldn’t be so bad if even one kid stuck up for me or was on my side. B was making fun that I couldn’t run all the way around the track in gym“.

He went on and on. And I nodded imagining A1 trying to explain at length why his Keens rubbed against his heels or how he was out of breath….stoking a fire that he did not know was smoldering.  I did not hear much else until the end.

“….and then B said to me ‘at least I’m not a transgender.”

I stood for another moment gathering my thoughts and wondering what A1 was thinking as I just stared at him floundering to find something to say.  I took a slow, deep breath, “and what did you say when he said that?

I told him ‘If you think I’m cute, you can just say so…..’”

Bam.

He didn’t deny it.  He didn’t admit to it.  He didn’t give the other boy the power to use that in a way that would have inadvertently bullied anyone else in earshot.  He shut that shit down.

I am sure if my child had the ability to remain quiet, he would.  However in that moment I have never been more proud of him.   He is potentially the coolest person I know and possibly not as vulnerable as he feels….and it’s not because he is 12 and has shoulder length black hair with Manic Panic lizard green tips.  He ultimately understands what it means to be transgender….to be different in a way no one gets.  He also doesn’t understand what the big deal is and why “adults can’t get over it either”.  He had several options of comebacks and told me he recognized that given the slurs thrown his way there were many cruel things he could have said but chose not to.  A1 is confused for a girl a lot.  Though we talk about it, he tells me he is not transgender nor does it bother him when people think he is a girl. He says he knows it goes with the territory of having long hair.  My Aspie tells me he is lonely, he tells me he knows people think he is weird…but he lives his life being true to himself, doing his own thing, wearing what he wants…and unapologetically giving zero f’s. And one day…when adolescence has passed him by I am certain he will come out the other side being a better person for it.

So North Carolina…in light of your clamoring last week to pass the adult equivalent bill of bus bullying LGBT people…my 12 year old with developmental issues gets it…why don’t you?  While we are at it…here are 12 other ways he is cooler than you:

  1.  He has mad Etch-a-Sketch skillz

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2.  The element of surprise

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3.  He also sets his own agenda.  But way better than you. 

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4.  Visual cues for piano practice?  He scoffs at those….

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5.  He tells it like it is.  And obviously is learning something in language arts on occasion.

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6.  He expects quality.  And he will wear it wherever he wants.

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7.  Oh.  He’ll do his homework alright…

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8.  This

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9.  Sure, he’ll write your silly story….

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10.  years and years of fashion….(not to mention his real dad is Tommy Lee)

 

11. Upper hand.

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12.  Discussed. 

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That one time Saturday Night Live was super un-PC and it worked…

I have no idea how to work our TV…so I have to ask my children to leave it on every Saturday evening so I can watch Saturday Night Live.  I often wonder if I watch it because it is the only time I don’t have someone whining at me that its their turn.  Last night between forcing my eyes to stay open and shoving a handful of popcorn in my mouth SNL aired this skit:

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This is a satire or maybe even a spoof of something that goes on all the time and SNL nails it.  Hear me out on this one….

About a month ago, before this Trump thing just kept getting more and more serious, I read the yuckiest headline ever…

UNDEFEATED WRESTLER LOSES TO RIVAL WITH SPECIAL NEEDS, MAKES HIS DREAMS COME TRUE.

You can read the article here: (http://www.insideedition.com/headlines/14311-undefeated-wrestler-loses-to-rival-with-special-needs-makes-his-dreams-come-true).

Once I moved through being perplexed  why a star wrestling champion would have a life long goal of losing to someone with special needs I realized what it really said.  Which was equally as perplexing and disturbing.

Since this has been so fresh on my mind recently I wondered….is the problem more about douchy people who want attention for being  decent human beings or is the problem more a media and journalism issue?  I pondered this just a bit last week as well when I blogged about Donna, an unsuspecting fast food worker who treated my child with a severe language disorder and autism just like any other patron. In our case Donna is completely unsuspecting that so many people now know and respect her because of her act….and it truly was an act that occurs  far less in our world than one might think. (https://runningthroughwater.com/2016/02/26/random-acts-of-dignity/).  The sensationalizing of reporting overly heroic gestures to include those with special needs is a reflection of our world.  Hollow good deeds and instantaneous 15 minutes of fame is raising the wrong kind of awareness folks…but it sure makes people feel good and it garners thousands of clicks.

Please…do not misunderstand.  Us parents are caught up in a catch-22 vortex.  Watching A2 join in to a neighborhood kickball game only to see the 9 year old neighbor run just slightly slower to retrieve the ball as A2 runs to his base is amazing.  But he DOES run to get the ball and he has gotten A2 out sometimes. The difference is that its not a one time thing.  A2 can be told “see you tomorrow” as an invitation to join in again.  And that 9 year old isn’t walking around to his friends saying “wasn’t that so nice of me?”…at least not in front of A2 or the rest of the world to be overheard turning a regular experience into a charitable yet humiliating one.  I love the idea of having my little guy being an equal part of the game….I even love the idea of the kind gesture of a child making him feel special during that game….I don’t like the idea of him being seen as a charity or a headline because of it.

And that is all.  Thank you Saturday Night Live and Jonah Hill for showing how ridiculous that is.  Go Tigers.

#SNL, #JonahHill

 

 

To the Regular Ed Teachers: Top 5 Ways to Keep Special Needs Parents Off Your Back

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My home phone rang the other day right before my kids got home from school. For those of you who do not know what I mean by “home phone”, its that thing that plugs into a wall and has the # symbol that cannot hashtag anything. When the home phone rings, I typically keep doing whatever I am doing unless I am feeling a bit of whimsy to torment the telemarketer likely on the other end. The only other time it rings is when someone at the school does not know to call my cell…which often then strikes fear in my heart. So I picked up.

“Mrs. ATeam?” Gulp.  It was A1’s new science teacher calling to say “First of all….let me tell you I think he is hilarious. He made this cartoon strip ….” He then went on to disclose all the other things drenched in awesomeness while I was waiting for the “Second of all….” part. That part never came. He called me to tell me I had a cool kid. And that was it.

I am already too experienced with the school system to be naive. That same morning I had to send an email to kindly remind another teacher to carefully review A1’s IEP and Health Plan as there were some important things not being followed. Coincidence to hear from the science teacher the same day? Probably not. I am guessing he may have just been reminded that he had a kid in his 4th period class who has an IEP and a Health Plan. Maybe not…but as I said, doe eyed ingenue does not work as well with crows feet.

Unfortunately, what struck me most about this amazing phone call is that in the 3 years that my younger A2 has been in public school…my very speech impaired child…I have never ONCE received a phone call from a regular ed teacher just to tell me about his day in their class. And let me be clear about 2 things. Real clear since this won’t apply to everyone.

1.   A2 tries to tell me about his day. Every day. And we CANNOT understand him.

2.   I have ASKED  for communication. Over and over. Every year. In front of other people. To almost no avail.

So teachers…this advice is completely free of charge. The key to keeping us special ed parents at bay.
1. CONTACT US FIRST: Before school even starts, call to introduce yourself and ask about our kid. Give us your contact information. Assure us you are the extra eyes and ears for a kid who has no voice.
2. DON’T ASSUME THE INTERVENTION SPECIALIST IS JUST TELLING US EVERYTHING. My kid has a whole 30-60 minutes a day of direct IS time required in his IEP in our high-end-award-winning-district. My severely learning disabled child. The paraprofessionals who are with him most of the day are not permitted to communicate with me directly due to their classified employee status. We often get second hand info from our IS that sounds something like “had a great time in music class learning new songs”. The small tidbits we do get…well…that’s all…that’s ALL we get to know. The nuances are never there for us…if they are making a new friend, if someone hurt their feelings if they thoughts something was cool or interesting. And those things are definitely happening in my child’s world and no matter how hard he may try to share those things with me, if I have no context, I will not know at all what he is telling me let alone what questions to ask. The paras also are not allowed to attend IEP meetings even at my request. Were you aware of any of that? A2’s Intervention Specialist has 10 kids who can’t tell their parents anything about their day. She is ALL of their voices….and she is trying very hard to be all knowing by being the 3rd party communicator. But why? This is a team approach. While you do have 25 kids in your room, if they are lucky and have parents who actually ask them about their day, their kids can tell them. You have so much you can tell us and I guarantee all of us want to know.
3. INVITE US IN: To volunteer, to be a fly on the wall, to talk about our kids to your class. Did you know that neither you nor any of his other caregivers during the day are allowed to divulge any information regarding our child’s diagnoses to the other children due to HIPAA**?  And there are SO many questions from children aren’t there? If you have an inclusive classroom, the information a parent can provide the children can be invaluable to the inclusive environment. Offer to include the IS to help that parent if they express interest but are uncomfortable. **IMPORTANT DISTINCTION:  FERPA (Family Educational Rights and Privacy Act) any information that is directory information is ok to give out.  So If a parent is asking for another child’s last name or to get in touch with another family, that is not confidential information if the family did not opt out of directory information.  You just can’t tell us the child is on an IEP or anything regarding diagnosis.
4. RECOGNIZE WE UNDERSTAND YOU ARE BUSY: We are not out to get you or have a “gotcha” moment. I cannot imagine being a teacher right now. Huge classloads, jobs dependent upon test scores that are dependent on more than just your ability, differentiated instruction, outliers flying under the radar, helicopter parents, uninvolved parents. A 10 minute phone call once a month to tell us something we wouldn’t know without your call. If you do that once a month without fail you will likely never hear from us. But your principal will almost definitely hear from us. To hear how awesome you are.
5. INCLUSION AND INTEGRATION ARE DIFFERENT: This doesn’t mean let them also have a desk and have peers help them hang up their backpacks (though we recognize the value in that too). I mean if you take a picture of our kids to put on a bulletin board make sure it is a good one like everyone else. If you are in reading to the class and you ask a question the other kids can answer, figure out a way to ask a question that could include our kids’ ability to answer. While you have kids who can fall through the cracks, ours have absolutely no way to mountain climb out of those crevices without you. I am sure like us you don’t want them just to be a warm body at another desk. Ask their IS for strategies…that is why they are there.

BONUS #6 also at no charge: THE MOST DIFFICULT PARENTS ARE LIKELY YOUR BIGGEST ALLIES: Yep. We are the wave makers, the getter-doners. We figure out what you want and need and we try to get it for you especially if it will benefit our kids. Sometimes you don’t even need to tell us what that is. We figure it out. Assume nothing regarding our motivations.

For those of you who went into regular education vs. special education–those days are long gone. Inclusion is not just the responsibility of your Intervention Specialists. Much like us parents of kids with special needs…we started out in the exact same place as all the other parents in your room. Maybe even as you did too as a parent. Our journey veered off years ago but the desire to get to know the same thing we would have if everything turned out as expected has not.