Gratitude with an Attitude. The Bigger Picture of Advocacy.

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Lots of people have jumped on the November Thankful Challenge on social media. I see people try for 30 days to declare the things in their lives for which they are grateful.  As a therapist, I can tell you its an excellent exercise in mindfulness–a way to connect and be present for those things we tend to take for granted.  Soul soothing salve  in the bustle of every day life. It’s also helpful from a cognitive-behavioral standpoint.  If we take a few minutes every day to reflect on the things that are going right amid the trashcan fires of life all around us, over time we can actually retrain our brains to become more centered, less reactionary and supposedly just happier in general.  It becomes a good habit.  So, why don’t most people take appreciative stock every day?  Well…I believe its because most of us have what we need (most and need being our operative terms.). So even if you don’t have much, you DO probably at least have a roof over your head, access to clean water, some kind of education and likely at least one person in your life who cares when your birthday is.  When things are going OK and at least that bottom floor of Maslow’s pyramid is built, we can still say, “well….at least I have my health” or “I’m lucky I have food on the table”.  This doesn’t always feel so much like gratitude in comparison in our rich-kids-of-Instagram kind of society and when we are not bombarded by rampant poverty in the streets or young people regularly dying from things like dysentery or malaria. Yet as special needs parents or as a disabled people, we are often expected to display this type of gratitude and grace in circumstances that at times feel this imbalanced.

I have somehow won the life lottery…and I didn’t do anything to deserve that any more than some starving, orphaned toddler in a war torn country did to deserve his lot.  There are many people who might look at my family and think otherwise since we were dealt the hand of having a child with a disability.  We have a life that can be exhausting and lonely and sometimes just very scary but what I find is that when life is that way, it is rarely because of anything my child has done or his disability itself…its more about the circumstances around him that prohibit understanding, access, equality or equity.

And thus the rub of the special needs parent and the expression of gratitude toward professionals who serve their child.

If a surveyor asked my child’s providers,”Do you think A2’s mom is grateful for the services you provide her child?”, my guess is that at least 80% of them would answer “no”.  They would be completely wrong, but still.   If that same surveyor could time travel and go back year by year to 2007 when A2 first started getting help and ask the same question, I  suppose that the percentage who would answer “no” would shrink in proportion to year asked.  Regardless of how many holiday gifts, number of hours I volunteer, amount of money I donate, number of thank-yous doled out, at this point I am still going to be seen as a wistful pariah.

As A2 ages and the disparity in needs between he and his peers grows, so does the need for advocacy.  There is a pervasive belief system that exists that keeps those who are disadvantaged in some way from asking for more and it is through the guise of gratitude and the false belief that the basics are a form of entitlement.  You are lucky to get what you get….even if it is not meeting your needs.

  • 20 sessions of speech therapy for your non-verbal child?  Well…at least your insurance gives you that much…some people can’t get speech therapy approved at all!
  • I’m not really seeing progress in my child, but the aides are nice to him and he seems happy.
  • Keep a mastered list of  goals to probe yearly?  You’re lucky we can even work on her goals with as many as she has.
  • He doesn’t need a bus aide.  He can make noise so its not like it would turn out  like  that boy who died on his bus because they forgot about him all day….
  • Sorting nuts and bolts is a career for lots of people. She may have an above average IQ but she’s lucky anyone is willing to take a chance on her
  • Kids just love him here at school, but no….we can’t tell you who any of them are so he can invite them over and extend those friendships to the community.  At least kids play with him here, that says a lot about the kind of person he is.

When exposed repeatedly to systemic issues that shame you into to accepting less, you get a little crisp when it comes to the process of fawning over people doing the jobs they chose. Can you imagine for one minute being OK with your child failing a subject at school and then thinking, “well…at least no one is hurting him there”?  No…those things are not interchangeable.  Ever.  Or what if your child’s class was going on a field trip bowling, but because they didn’t have bowling shoes in her size they just didn’t even tell you about the trip? You are probably going  to get more than a little angry…and maybe even angrier when they suggest that all the kids who wear a size 6 shoe will get to go to for a tour of a widget factory instead at the end of the year, so what’s the big deal?  As parents, we want to always feel and show gratitude to those who we entrust our children…but when trust is bent it dulls the surface.

At the end of last school year, one of the school administrators let me know just how stinkin’ cute A2 is and how he brightens everyone’s day and how much kids just love him.  “He has made so much progress..he comes right up to me now and always asks to see the PA system!” she exclaimed.  I nodded and smiled and said nothing about how platitudes like that can ruffle the feathers of pre-adolescent special needs parents because, you know….gratitude and grace. We have to show ours a bit differently. It’s not that we don’t like the compliment, however very soon, that go-to strength of his of being little and cute, the thing that draws people to him and keeps people friendly  will be gone. Drinking out of a sippy cup with a full beard is not adorable….it will be confusing and odd to people who don’t know him.  And it scares the hell out of me. So instead I say nothing for fear of not seeming grateful for at least that.

“Yes, progress.” I say. “Though I worry. He still cannot read, we still have not cracked that code and he only has one more year here”.  She side eyed me with a friendly smirk , lifted her finger as if to gently stop me and said “Mrs. ASquared, you GOTTA focus on the positives.  You just gotta.  He’s a great kid”.

Do I though?   I keep getting taught that focusing on his deficits is how we move forward. And by the way…Yes, I do….and I do it all the time….but not  for the purpose of making sure other people can see the gratitude.  I unfortunately don’t have enough energy anymore to  make others feel good for doing their job .  Its not to be cruel, its so I don’t lose sight on how to do my job.

Focusing on the positives is why I have to advocate and ask for more.  More out of the box thinking, more time, more energy, more inclusion.  I see what he is capable of achieving all while being systemically reminded in quarterly meetings of things he still cannot do, how services won’t be expanded to accommodate that fact and how planning for a future where if we are lucky, he will get to be a marginal member of society. My child lives in a society that sees the deficits, that sees the differences and believes that the slightest hint of meeting his needs because of his differences is an entitlement.  A society that believes that being adorable is a strength. A society that makes heroes and saints and examples out of others showing my child dignity, when they come to work or are being a friend.  A society that doesn’t hashtag abuse, neglect, bullying and even murders against children like mine.

So team members…if you are confused about my level of gratitude for your involvement with my child, don’t be.  I am never short on gratitude, and when my child is happy and progressing, what our collective efforts are doing is working.  I too have a job where the pay is low,  the paperwork is tedious and 100% of my work is about helping other people. I too am rarely told thank you but that is not why I do what I do.  I am trying to make the waves to change systems and influence the way the world sees people who are at a disadvantage. By accepting less simply because we are told we should be grateful for what we get is the dysfunctional thinking that will keep things inequitable.. always.  I am doing the future of disability advocacy and everyone who works with kids like mine a disservice by this act as well. When I am sitting on this side of the table,  its my job to check and double check your work, ask questions and tell you when something isn’t working.  That is not the opposite of gratitude, that is showing you that what you are doing matters. Its the ultimate compliment.  My kid is your boss and I am trying to teach him to always get what he needs based on HIS different needs in this world.

I’m just trying to do my job as his mother, one that is universally never the recipient of gratitude is often met as if I am a villain and yet is still the most rewarding job in the world.

Allergies and Autism and Sensory Overload, Oh My! How to Make Halloween Inclusive

Halloween is right around the corner…here’s some of my top tips and tricks to make Halloween fun and to hand off to any of the indignant PTO moms who have forgotten that ALL kids want to have a good time…..

Running through Water

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Though Halloween parties have turned into “Harvest Parties” at school, the anticipation and sentiment of Halloween is still timeless. As a parent I find myself still caught up in Halloween and creating spooky Pinterest fails and contemplating what candy I can pilfer from my child’s treat bag without him noticing. Some costumes are so realistically scary that I am not certain that my red meat consumption hasn’t finally caught up with me and am opening my door to the actual Grim Reaper himself. There is a revolving door of Elsas and Ninja Turtles who could just very likely just be the same child over and over again capitalizing on those homes who everyone knows passes out full sized candy bars.

A couple of years ago I was coordinating a party for my child’s 4th grade classroom. 20% of that classroom had food allergies. I gently reminded parents that the goal…

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Autism’s Lost Text Message

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One night as I was plugging in my son’s iPad, I noticed he got a text.  Many parents lose sleep over whether or not to invade their preadolescent’s privacy by looking at personal messages, but not me.  My child at 11 years old is completely illiterate and he had never gotten a text before.  I glanced around as if nervously waiting to get busted for reading it, but the truth was my stomach was in butterflies out of joy and excitement.

Hi A2.  This is Ryder

Are you in bed?????

If you aren’t what time do you go to bed???

Maybe I have been wrong!  Maybe school has been helping him truly cultivate and explore friendships after all! Real ones!  A2’s class picture was on the refrigerator and I ran to it to ask him which one was Ryder. I recognized several of the boys in his class but didn’t know anyone named Ryder. Unfortunately, my son has a severe language disorder called Childhood Apraxia of Speech in addition to Autism so I had no way of knowing for certain which one Ryder was because A2 enthusiastically would answer “yeh!” to every child I pointed to including the girls.  Could he be a child from the resource room?   I could not know that either because  the school will not tell me the names of any of the children in that room due to “privacy”.  The kids he spends the majority of the day with.  The kids who also probably never get or send texts or receive invites to play. The kids, like A2 who can’t just ask each other and then come home and tell their moms.

My husband and I were feeling almost hypervigilant over where we would know this child from since the phone number’s area code was from a city we used to live in many years ago.  A2’s real name is an unusual one, so clearly this is meant for him. How did he get A2’s number since A2 doesn’t even know it?  Does this child comprehend that A2 can’t read? Could this be an adult?  A teacher?  A predator?  My joy was quickly turning to irrationality as my husband texted back to give this Ryder person a piece of our mind!

As it turns out…..Ryder was trying to get in touch with A2.  Just not MY A2.  Ryder was in 6th grade and had just moved from the area code on the message to our area code and had met a new friend at his new school (not ours) that day, exchanged numbers and did what every 12 year old does when making new friends.  A2 was contacted by a ghost. An illusion of a promise of the world to come.

The coincidence lacked the sparkle of serendipity and sent a gut punch that made the butterflies swirling in my tummy fly out of my mouth and away into the sky out of reach.  One three lined text of 19 words, 57 characters, 6 question marks and 2 happy face emojis sent me into a 10 minute emotional tailspin ending in a disappointment.  While my reaction may seem dramatic and my sweet boy was oblivious, man alive, I know he would have LOVED for that text to be his if he knew. You see, that would mean someone wanted to tell him that they got a new skin in Minecraft, or ask him if he wanted to ride bikes to the park or see if he’s allowed to see that Jason Bourne movie. It would mean that someone might be sneaking him a You Tube video he isn’t allowed to watch at home or asking him if he thought the new girl was cute.   It would mean that someone was thinking of him right at that very moment. It would mean he had value to people other than me and his dad.  It would mean he was growing up.

Before this whole parent thing came along and made me loopy with worry, I used to help families move their loved ones into nursing homes.  One particular instance, I helped take inventory of a man’s belongings and I asked him to give me his wallet so I could start a resident account for him to keep his $10 bill safe. He refused and his wife asked to speak privately with me in the hall.  “I know he has no need for money here, but is there any way you can make an exception to let him keep it with him?”. I’m certain I did not handle the situation with sensitivity or understanding because she replied, ” We were never wealthy people but he was proud of the fact he always put food on the table or could hand his sons money when they needed something. That money in his pocket makes him feel like a man. And that, child, is all he has left to feel like one.”.  I let him keep the money and have contemplated since then what the last material thing I would hold on to would be and why. I just didn’t realize that it would come earlier in life and be a random text message that was not meant for my child.

These things.  These little things that give us a perceived sense of value–that we anchor to other things and make them into something more.  Ultimately, the text itself was probably meaningless to A2.  He however does very much care about all those things that receiving a text implies.  Having a way to communicate with the world makes you a part of it and having a rolling digital scroll of blue and white messages are like the receipt to prove it nowadays.  My friend’s daughter left her phone at home while she was at overnight camp and powered up when she returned home to 1022 unread text messages. I never did ask if she read them all.  I do know that A2 will never experience the betrayal that can come with adolescent friendships and are exacerbated by text messages.  No girlfriend break up text.  No secret texts between friends who are standing right there with him, exploiting his trust.  No anxiety over the three dots or “read” receipt.  No.  None of that. While I am disappointed that Ryder misdialed and reached out to the wrong A2, just for a moment I thought about grounding A2 from his device because he knows he shouldn’t be texting so late.

I would rather___________ than go to curriculum night.

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Many years ago when A2 entered the public school system he came from a private school that had a peer program and an ABA focus.  He is so influenced by his peers we thought maybe it would be a good time to bring him back to our school district while he was so young.  It was no small decision and perhaps ultimately made under the haze of xanax.  I waltzed into school on curriculum night, notebook in hand, mascara and lipstick reapplied. I waved and smiled at other parents I recognized from the neighborhood. We chatted about the end of summer homeowners association picnic and how nice the tennis court was looking now that they repainted it and we absolutely should get together for tapas sometime (how has that not even happened yet?!). The desks were so small and facing each other.  Tidy containers of crayons divided by color, posters on every square inch of wall space, shelves that housed bin after bin of books. Mobiles hung from the ceiling.  Not at all what his ABA classroom looked like…way too much to distract..but it was all good.  He will learn to adapt to this no problem…the neighborhood kids are all here!  Someone took the time to take all the crayons out of the boxes!   I found A2’s desk and it had a paper name plate with cartoon pictures of pencils and school buses just like everyone else.  There was an envelope on his desk with all the “getting to know your child” papers like everyone else.  There was a tidy blue folder with the agenda for the evening waiting for us just like everyone else.  Sure….my mother hips were hanging over both sides of the tiny chair and sure, the middle aged teacher greeted us and held her gaze with my husband much longer than she did with me…..but that’s what we do here in public school…normal, regular people stuff.  Then the teacher started talking.  And talking.  And asking us to turn pages in our packets.  And telling us what our kids can already do walking in the door on the first day and where we could expect them to be when they walk out on the last.  And the road map to get there sure as hell was not the road map to get to Italy or even Holland for A2.  Nope. Flyby right over Europe to the heart of Syria (which I hear is really, really nice this time of year….really nice. Hot.  But it’s a dry heat.). I did not see the person who punched me in the stomach. I didn’t even know that a sucker punch was possible in a mainstream classroom. Before I could find out if a bitchslap was next, I gathered my things and walked out.  That teacher never did follow up with me to find out why I left, or if I was ok or if my husband liked her new back-to-school-sleeveless-blouse.  A2’s intervention specialist saw me in the hall and gently said “..come with me to the resource room where he is a rock star. I’ll show you around”.  She meant well, but he could be a rock star at his other school.  I decided right then that the only way I would ever cope in another curriculum night was if I could sit at one of those tiny desks with a Big Mac and a bottle of stoli while listening to other parents ask questions like,”what if my child is above the standard for reading?”  or complaining at the lack of computers in a room he won’t actually get to be in. I might be able to get away with the Big Mac…but the vodka would probably be  frowned upon at the administrative level.

Don’t misunderstand…my boy is perfect in most ways to me (sometimes he is a bit of an asshole…no one is 100%)…I don’t fit a mold and when I realized I was going to be a mom 13 years ago I had no expectations my kids would either.  I embrace the weird and inappropriate and many days it takes all of my will to push my monkey brain back into it’s cage before it starts flinging poo.  I’m ok with all that.  What is hard is that the rest of the world generally is not.  While he gets the desk and cubby just like everyone else, he doesn’t get to have sleep overs, or bathroom privacy or even a way to ask  other kids if they will skype or text him later.  Due to “confidentiality” the helpers assigned to him are not allowed to tell me the names of the kids he would probably want to ask anyway.  He doesn’t get detention for talking out of turn or showing up to class late.  He doesn’t trade carrots for cookies with the kids at lunch. The bins of books must still be read to him and doesn’t get excited when he hears about the release of the newest Harry Potter book.  And curriculum night?  Well…all those things are written in the blank spaces between the lines on the syllabus.  The syllabus that is only visible to certain parents.  Not just like everyone else. The tiny desk is like a mirage.  Those things don’t happen because those are not the things that are important to the people who spend 7 hours a day with him.  Goals are set to reflect the things A2 CAN’T do rather than what he can whereas the curriculum for the rest of his peers are focused on what they WILL do.  And not just at 80% accuracy in 4 out of 5 observed opportunities.  I spend my life cherishing the tiny accomplishments inching along unseen by the naked eye or letting hurtful comments roll of my back like water off goosefeather by people who meant no harm. I can sit through all of that, but it reminds me my child is lonely.  And I won’t sit through that.  So tonite, the very last curriculum night of elementary school for me ever….like a pro  I went in, signed my name on the volunteer list, eyeballed the room of parents , took 2 tums to settle my stomach in anticipation of the Big Mac in my mom-bag and walked out.

The bottom line is I would rather have heartburn and a hangover than go to curriculum night.  What would you rather do?

Here is a short list I had some friends help me compile.  Thank you Dava, Kelly, Anne, Carmen, Jessica and Katie

Express my dog’s anal glands

Watch another episode of Caillou

Make out with Donald Trump

Fall asleep in an Uber

Run 5 miles in the summer without chafe guard

Receive a text from Anthony Weiner

Wear truck nuts as a fashion accessory

Get through a Monday without coffee

Drive across country with my kids with a dead iPad battery

See my dad in a man-thong

 

 

 

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.

 

 

Day 21. T is for Teachers and Therapists.

Day 20 2016: T is for Teachers and Therapists

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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)

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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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Day 7 2016: G is for Genetics

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G is for Genetics

I get asked often what I think caused my children’s Autism.  I believe its completely counterproductive to even consider it until such a time that there is solid evidence.  They are here now. I love them fiercely.  Their 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 and is not something to be treated  (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.  And 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 is…or the environmental one in Autism.  I am not going to even pretend to know anything about genetics…all I can tell you is to picture a city with 20,000 streets.  Now lets figure out which streets have public mailboxes, one way traffic, standard poodles and single mothers living on them.   Only some people who travel down those streets buy mandarin oranges (not regular naval) and we need to find those people.  (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 genetic disorder.  Period.  To worry about anything else is ridiculous.”.  I sat for a moment and thought about that.  I then I wondered out loud “Hmmm.  Ok.  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.

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…because their eyes could have just as easily been blue instead all things considered.   And if genetics 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 once 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.

Day 4 2016: D is for Diagnosis

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D is for Diagnosis

By the time my oldest was 18 months old, I knew he had Asperger’s….but no one else seemed to know except for maybe my husband.  He spoke like an adult yet seemed confused whenever anyone asked him something directly.  (“He’s a genius!  Listen to him talk…he’s just busy thinking about other things”).   At Mommy-Tot class while all the other babies would watch with wonder as technicolor bubbles floated by, he was finding his way across the gym to open and close the door over and over. (“He’s a genius!  Bubbles are beneath his intelligence!”) And yes, he loved to go to the park….but would decide which park based on what kind of public toilet was there and then would spend the majority of his time in said toilet if allowed….and I would often have to threaten him with a consequence if he didn’t go and play (“He’s a genius!  He’ll be an engineer one day…he just wants to know how it works!”).    While he also never hugged or kissed me, he would let me do it to him.  I said “I love you” any opportunity I had but he never said it back.  He would let me sit down to play with him, but his back would soon be turned and he was playing on his own again.  His conversations often consisted of repetitive phrases over a video he watched over and over for months at a time.  The list could go on and on….but the fact was that he was not particularly disruptive, he was functional and he was so cute and tiny and spoke so well people mistook him for a quirky genius.   What was difficult is that we lived far from family and friends so when they saw him for brief periods they would just tell us we were worrying too much.  They would see the quirk for a few days at a time….not hours on end like we saw.  So when my youngest got to be about 8 months old and clearly had serious medical issues all concerns we had about A1 went to the way side.  My concerns were still there but again were also pushed aside by the pediatrician when I would bring them up (“Some kids are just persistent” “Drooling has just become a bad habit”)  It wasn’t until he was 7 years old that I had him tested and really, it was only because he was floundering at school.  I was being told that “some kids are average to below average”….the same kid just 2 years earlier everyone was telling me was a genius.  I had to see if he had a diagnosis in order to get him the assistance he needed at school…And sure enough….psychoeducational testing by a licensed psychologist showed what we always knew.  ADHD and Asperger’s Disorder.  A few years later I actually got a second opinion from another psychologist…and guess what….same outcome.  On standardized testing. Across settings.  Again.  He is definitely not a genius…but he is also definitely not below average.  A1 is the fall-through-the-crack kid.  His rigidity can be seen as defiance.  His poor social skills makes him look like a loner.  His attention issues make him look lazy.  And as the person who lives with him 24/7 I can tell you he is no more of those things than any 12-year-old.  He is a people pleaser and when he thinks he has failed at that he kicks himself over it.  Overall, A1 is going to be fine….but I believe it is because we have recognized the thing that makes him different…but not less.

A2 was not diagnosed until the age of 4 despite my husband and I and everyone around us knowing something was very wrong.  What was troubling was that when he turned 6 months old and I started him on solids…everything else stopped.  Except for the worst constipation I have ever witnessed.  He stopped growing.  Stopped.  Completely.  At one year he was about the same size and weight as he was at 6 months old.  He stopped developing but did not lose any skills.  At 12 months he was the same adorable little nugget he was at 6 months.  Was it possible I willed him to stay an infant?  What also did not change was his inability to stay asleep for more than 90 minutes at a time.  Down for 90…up for 2 hours.  This went on for 2 years and one day I got the flu and was out of commission for 10 days.  I had to let my husband get up with him through the night.  When I got out of those sweaty sheets after 10 days….it occurred to me that I was not clinically depressed as I believed I was up until that moment my body became an achy, hot mess….I instead emerged a new woman.  A rested woman forced to sleep by a virus.  A2 had already been diagnosed by a fresh muscle biopsy at the Cleveland Clinic with Static Encephalopathy with Mitochondrial Dysfunction….we got a scary letter to take with us everywhere we went.  We were told not to let his blood sugar drop too low.  We were told to keep him cool in the summer.  We were told to have a very low tolerance for fever and dehydration.  We were told he had an uncertain life span.

At about 2 years old when he started crawling he found that rubber stopper thingy  behind a door. Thhhhwwwaaaang! He’d whip his head to the side and roll his eyes.  Thhhhwwaang again.  Again with the head thing and eye rolling.  I remember my heart dropping to my stomach.  I remember thinking “oooohhhhh shiiiiittt”.  I knew that was a stim (self-stimulatory behavior). For the next 2 years I watched A2 develop at 20% of the speed of the rest of his peers.  He went from being the most social baby of the group and as his peers developed speech I watched him realize he was not part of the group…to standing by the group and watching everyone play….to standing out of the group and not paying attention to everyone.  To this day I believe it is not because he didn’t want to…but because he knew he couldn’t.  He flapped.  He screamed.  He stopped eating all solid food. He had no language other than the vowel sounds of babbles of a young infant.  But he was still sweet, and loving and laughed heartily.  He was finally diagnosed at 4 years old with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).  The diagnostic version of “your kid has Autism…mostly…”.

What’s in a name? Autism, Asperger’s Disorder, Pervasive Developmental Disorder Not Otherwise Specified, ASD, HFA, On-The-Spectrum, Neurodiverse, High functioning Autism, Severe Autism, Non-Verbal Autism.  You may have heard any and all of these used when hearing about someone who has Autism Spectrum Disorder (the now official diagnosis to describe all of the above as of 2013).  We will likely intuitively still call Autism all of these terms because as we have all heard “if you meet one person with Autism…you have met ONE person with Autism”.  The criteria was narrowed and Asperger’s and PDD-NOS were eliminated from official diagnosis.  In my private practice as a therapist, I now see children who come through my office with a list as long as my leg (I’m only 5 feet tall, but you get the picture).  Oppositional Defiant Disorder, ADHD, Sensory Processing Disorder, Dyslexia, Social Pragmatic Communication Disorder, Bipolar Disorder……all in one child.  Why??  Because we have eliminated Asperger’s Syndrome from our vernacular.  My children have both been reclassified as Autism Spectrum Disorder (as they are supposed to be due to consideration of prior history and diagnosis).  But they could not be any different.  With hard work that would make your head spin and a hard-core bitch of a mom they continue to improve in terms of working toward being independent, contributing members of our community.  But they could NOT be any more different.  This is autism.

Day 2 2016: B is for Behavior

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B is for Behavior

All behavior serves one of 4 functions.  To gain attention, to escape a situation, to gain access to something (usually tangible) or a response to an internal stimuli such as hunger, illness or exhaustion.  Seriously.  Just 4 reasons anyone does anything.  Think about it…you won’t come up with a 5th..I have tried.  Of course, if it were that simple we would all live in harmony.  However, there are some times it gets tricky.  For instance, when a behavior is triggered by something internal, it can be incredibly difficult to identify.  So if a child with autism likes to clap his hands near his ears is it because he likes the sound?  Or is it because he likes how his hands feel when he claps them together?  Or is it because it creates a little wind near his face which he likes?  To make matters even more complicated…a behavior can change function midstream and without warning.  So that same kid who liked hearing the sound of his own clapping next to his ear and his parent rushes over to him and holds his hands and tells him “stop!  Lets play instead”….her reaction may have just inadvertently changed the function of the child’s behavior from internal reasons to external…perhaps it becomes a great way to get his parents’ attention now too.  Such is the nature of human existence…including humans on the Autism Spectrum.  It is easy to judge others without understanding when looking at their behaviors through our own lenses.  So next time you see a child having a tantrum in public or seems out of control…bear in mind that the function of his behavior may not be attention like you might be used to from a bratty kid…..he may be responding to sensory overload and needs to leave or perhaps if you hang out long enough you may come to find it may be screams of joy because he has no other way to express it.