Day 10 2016:J is for Just Ask

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J is for Just Ask

When I sat down every day last year to do this A-Z project, my biggest take away was the candid responses from friends and acquaintances.  Many of whom told me they wanted to reach out, but didn’t know what questions were ok to ask.

I understand that on a few levels:

  1.  As an inhabitant of this earth, when we see something we don’t understand or is different, we feel compelled to want to know the “why” or the “what happened”. Perhaps its part of the survival instinct-  A primitive way to avoid something that is contagious or preventable.  So, often times when it’s not thought about and someone approaches me and says, “what’s wrong with him?”, my instinct is to say back, “rude people are what’s wrong with him”. When I shift my schema and recognize that even in those awkward moments there is the possibility to make it teachable, I can have a lot more empathy for the individual asking.  After all, I am not sure I am that much more comfortable with a stranger asking me a more direct question either. (ie: “why is he making that hooting noise over and over?”when really I might have absolutely no f-ing idea myself in the moment but I would very much like it to stop).  Parents–whether we like it or not, we are the conduit to bridging our children with this society Many of us are their voices. Even if one person out of 10 who ask are asking to be nosy or rude, if we do not respond as an advocate, we make the assumption that all people who ask in that way are being nosy or rude.  So, instead of “mind your own business” or “whats it to you”, maybe try, “I think what you meant to ask is that you notice that he can’t talk.  This is his speech generating device, would you like to see how it works?” or “My child can understand everything you say and the way you asked that in front of him makes me uncomfortable.  There is nothing wrong, but it seems like there is an aspect of his behavior that you would like to know more about.  He has Autism and maybe one of us can tell you more”.  Pollyanna much?  Sure, but the only way we will change the asker’s behavior is by gently alerting them to the problem, offering a solution and giving them a reality check.
  2. On occasion, people want to ask how they can help. More times than that, people don’t realize we need help.  For those of us who have kiddos who don’t have a obvious trouble in the community, we move along to normalize our experiences. I have been told that I give off the air of having everything under control and that I don’t need anything.  Part of this is for my kids benefit. No one wants a hot mess of a mom in public.  Another part of this is because as my job as a therapist in this close-knit community, I feel like I need to maintain a balance of vulnerability and strength. The hot mess part needs to ride in the back seat to ask “are we there yet?”.  There are other parents whose kids CANNOT safely be in public places.  So, you just don’t see those people.  Their life behind closed doors is like an invisibility cloak and they are not getting asked what they need for those reasons.  Frankly, many of us have NO IDEA what to tell you about how you can help. My family comes infrequently enough, that to dole out a honey-do list also requires having to walk them through where things are, etc. Ultimately, this means more work.  If there were an emergency, they are not enough of a trained listener to know what my child needs if he tells them.  When a friend asks if they can watch my kids so we can get out…well, I still haven’t figured out exactly how one explains that you can’t imagine asking them to change a 10 year old’s diaper ….or telling them they probably won’t get to sleep through the night and must keep one eye open when they are sleeping.  Sometimes people ask to help but they just don’t want to do what you do need. Their perception becomes that you are unreasonable. It is your own fault you are not taking their help.  All can serve as barriers to asking the right questions or giving the right answers for assistance.
  3. People make assumptions instead of asking at all.  Just the other night, a young woman I work with asked me for advice in a situation about a member of her not-for-profit youth group. This teenage girl has Autism and when the entire group is together she tends to get very dramatic and will end her tirade by running out of the room.  This young woman sighed and said, “She only does it in big groups. Obviously attention….we are thinking of ways to let her know that maybe this group isn’t a good fit for her. It’s not-for-profit, so we can’t tell her she can’t be part of it.” We discussed the fact that perhaps they were misreading the function of the girl’s behavior.  The consequence is what sustains the behavior– if no one is rushing out after her, what is the likelihood that this behavior is to get attention and not escape or something internal due to the stress of being in a large group?   She wondered aloud if they should contact the girl’s mother to try to figure it out.  I wondered aloud what would happen if they just asked the girl herself, since she is her own expert.  Use the time and energy to find out what she needs to be a part of the group in a way that works for her rather than using that energy to figure out a way to help her move on.  We cannot help but to look at others using our own lenses.  But sometimes our lenses are smudged, are rose colored or even broken.  By not asking in this kind of situation, others assume they know what is best.

Lets face it. It’s uncomfortable to ask about people who are different than we are. 

We may be curious, afraid of coming off as rude or misread other’s cues.  We may not want to know the answer, we may not want to change our own ways.  We may already have assumptions and think we are right, we may be uncomfortable due to our own scripts about social norms, or frankly, some of us…we may just not care. 

For those of us being asked, we may be offended, we may be hurt, we may not want to talk about it.  We may not know the answer, we may not want to admit to an issue or call attention to it or we may not want to be reminded.  We may not want to be rejected. 

So let’s all agree on something. Asking and telling can suck at the outset.  Let’s move past it.

Those of us who are Autism Families…we ARE the awareness. How you choose to let that manifest is up to you.  In my world, however, if you ask me, I promise to tell you.

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.

Day 1 2016: A is for Advocacy

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A is for Advocacy .

Today is World Autism Awareness Day.  Coincidentally, it is also the day that I will be speaking in front of a very large audience at a Tedx Event stealthily addressing the first step necessary in tackling the mountain for disability advocacy as whole in society. About a year ago I realized that I was advocating my way to an early grave.  The individual battles, bureaucracy and other professional’s personal agendas were getting to be insurmountable.  So I stopped.  I don’t think I have looked at a piece of paper with either child’s name on it in almost a year.  I did it out of self-preservation….I did it as a life insurance policy because I have to live one day longer than A2.  My real life insurance policy runs out in 7 years so I either needed to up the ante and increase my red meat consumption to run out my clock or back away.  I chose back away.  And during that time a metamorphosis occurred.   I realized that it may be much easier and much more impactful to change the world around my children through advocacy rather than to fight the good fight one arduous and marginally successful battle at a time.  And if you know me personally, I think you saw it happening too because people are believing in my movement…quickly.  Very, very quickly.  It’s working already.

Advocacy for those with Autism and other developmental impairment is  becoming a trickier and trickier thing.  The landscape of Autism has changed significantly in the last 25 years.  The prevalence rate has hopscotched up from 1:2500 to about 1:68.  That’s a 600% increase.  One reason may be is that as professionals become more familiar with ASD it has been more frequently diagnosed.  While this is true, conventional wisdom tells me that this is only a small part.  Let’s face it…how many non-verbal, incontinent pre-adolescents did you know growing up?  Because at one point in the last few years I had 2 living on my cul-de-sac.  This is not counting the other 8 with varying degrees of ASD who live within a 3 block radius.  The prevalence rate has risen at the same time computers became a common household item and paying for the internet became yet another utility bill.  For the first time ever, previously isolated families and those with disabilities had a way to connect with a community and also gain information about treatments, supports and advocacy.  I have learned more about what to do for my children through the Internet than any professional has ever taught me.  People who were diagnosed (or perhaps misdiagnosed) 20 years ago are finding each other and forming a neurodiversity movement.  It is for these reasons that I believe the disabilities rights movement has the potential to be the swiftest civil rights movement in history.  However, I also believe that it could be one that never fully comes to light for the same reasons.  Advocacy and fighting for individual rights are actually very personal experiences.  We all have our stories…and some frankly would make most people’s ears bleed to hear them.  What is right for one individual may not be whats best for another…and the reasons vary.  Mix this in with hypervigilant parents, hypervigilant self-advocates, a fragmented healthcare system and school systems who may have been better equipped to deal with IDEA at a time when they might see 1 kid with ASD in their whole district rather than 20 just in one grade and we have a recipe for a whole system collapsing in on itself with the casualties being the very people we are advocating for.  (**Internet Troll Disclaimer:  REEELLLAAAXX…..I’m not talking about YOU specifically….I have included other hypothetical situations…as well as many I did not….).  As a group, I am challenging everyone  to think about the common threads rather than the details.  Go talk to an anti-vaxx parent…and then go talk to a pro-vaxx one.  Have a chat with a parent who paid for 40 hours a week of ABA therapy that was ultimately successful for their child…but also talk to an adult with ASD who had ABA back in a time we called it Lovaas and there was no such thing as “errorless learning”.  Talk to the retirement aged parent you don’t see because they are trapped in their house on lockdown with their adult child who is severely affected with Autism, violent, self injurious and an elopement risk but there is no funding to place them in a safe environment.  Then go talk to the Autistic adult who wants people to accept that people first language is harmful and ASD is not something to cure.  Ask them all to talk about a time they needed to advocate for themselves.  And listen closely.  Self preservation and love are both innate.

It’s Autism Awareness month.  Let’s raise the RIGHT kind of awareness shall we?  We can be a united front even when we have our own agendas.  He HAVE to be a united front even when we have our own agendas.  The future as society as a whole is depending on it…..

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 it’s 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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The Champ: Jonah Hill is not the Winner you think he is

For those of you not completely cued in, this is satire of something that goes on in the lives of individuals with disability all the time.

Did it make you uncomfortable?

SNL nails it. 

Hear me out on this one….

About a month ago, 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. 

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

A wrestler with special needs was given the opportunity to feel like his hard work paid off. He won against a wrestling champ…but not really and that is now NATIONAL HEADLINE NEWS.

Since this has been so fresh on my mind recently I wondered….is the problem more about selfish 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 blogged about Donna, an unsuspecting fast food worker who treated my child with a severe language disorder 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. It truly was an act that occurs far less in our world than one might think.

The sensationalizing of reporting overly heroic gestures toward 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 he 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? Did you see what I just did?”…at least not in front of A2 or the rest of the world to be overheard. That gesture turns 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.

Tigers Forever.

#SNL, #JonahHill

Random Acts of Dignity: The Ultimate Advocacy for My Disabled Child

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Dear Donna, Cashier at Wendy’s,

My 10 year old and I stopped in for lunch today on your shift. I could see after you asked him how he was doing today that his jumbled answer might have caught you off guard. You shifted your eyes to me and then back to him as he continued…something that happens all the time in our world. So I looked down at him and as his 24/7 speech and language coach I said “You can say, ‘I’m good!'”.

But then you caught me off guard. Instead of looking to me for his order, you asked him.

He answered you.

You leaned in and said “I think you said you want a cup of water. Is that right?”

He nodded.

“Aren’t you getting anything to eat?! What else?”

After he excitedly spit out a string of jargon you asked him to slow down and try again. So he did.

“Fuhweyes” he said.

What size?” you asked.

Mee-yum.

Great….anything else?” she asked, glancing quickly in my direction.

I shook my head as my son clearly said, “Nope!”

What you didn’t know as we held up the line is that my son has Childhood Apraxia of Speech, but the name of his disorder didn’t matter to you. What mattered to you was making sure you got his order right.

You didn’t “let” him be an equal patron at your restaurant…he just was.

You let him be his own expert.

You presumed competence. Not your version of competence, his.

You allowed him the dignity of time.

You asked him his name to put on the screen for his order just like everyone else and checked out to see if you said it right. You even asked him if he knew how to spell it for you. So he did.

Through this act I am certain you are not expecting a newspaper article or local talk show segment. You weren’t trying to be noticed or given kudos or wanting to be called a hero because you took a moment and tried a little harder. You wanted a 10 year old at your counter to order lunch just like any other 10-year-old might on a Friday afternoon.

Advocacy and inclusion are tricky things. When they come from a place of equality, empathy and understanding they are wonderful things. When it lacks authenticity, it can still have a place but can also be humiliating and damaging to an already fledgling movement. By “letting” my child be prom king, shoot the last basket in the last 10 minutes in the last game of the season, by being so kind as to “be his friend” , well meaning people are inadvertently continuing to marginalize him. No one has assumed that he was worthy of the crown on his own, able to make that basket without help or that maybe he makes one heck of an awesome friend and that perhaps HE is the kind one.

So you, Donna your authentic advocacy is the kind that will change the way we as a society deal with disability. Thank you for lunch with a side of hope.

Sincerely,
A2’s Mom

Day 4. D is for Details

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In grad school I learned this neat little thing called a ecomap…and then saw another mom post a personal one in a blog. A year ago, I decided to make one for the kids (for sake of privacy, a fourth of this map is not shown) For us, that means 37 total IEP objectives and 19 ISP service areas to track, 44 providers, 12 clinics and 6 agencies we are in regular contact. All before work and caregiving. When you meet a parent of a child with special needs–and if you run into them somewhere and they don’t seem to recognize you….or you already know one who seems extra high strung or flighty or snarky….well….cut them a little slack. Not everyone is built to keep this much in their head all the time.

Day 3 2015. C is for Coping

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In the most typical of situations sibling issues exist. For sibs of those with significant impairment, these kids are often the invisible bystanders. Their issues and needs sometimes take backseat to the immediacy and reality of their sibling with Autism needs. We ask them to deal with leaving fun events earlier than they would like, let embarrassing situations roll off their backs and stifle disappointment. The rate of having more than one child with neuro diversity is high. Sometimes, the less impaired child is asked to cope and step up in ways that would challenge even the most typical and mature of children.