Day 14. N is for Night

Day 14 2016: N is for Night (original posting April 2015).

Running through Water

Day 14

This photo was taken over the Scioto River in broad daylight but thanks to filters it looks like a cross section between day and night. When sleep is elusive for our children with autism and days roll into nights roll that into days… that sultry blanket doesn’t seem quite as enchanted and that line between light and dark not nearly as defined. I’m not certain that A2 has ever slept through the night in his life. For the first several years of his life he was up every 90 minutes or so. I was told to let him cry it out. So I did. And then abandoned the wholehearted attempts after 11 weeks. We have it easier than many. A2’s nighttime visits do not include damaging the house, self harm or escaping….but is instead marked with fitful wandering, bed hopping, laundry for diaper leaks and sometimes a sneaky visit with…

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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 the my biggest take away were the candid responses from friends and acquaintances.  Many of whom told me that they wanted to reach out but often times they 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. “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”….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?  Yes. 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.  A lot of times people don’t realize we need help.  For those of us who have kiddos who don’t have a tremendous amount of trouble in the community….many of us 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…again…the hot mess part needs to ride in the back seat and can 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…..they are not getting asked often for those reasons.  And frankly, many of us have NO IDEA what to tell you how you can help.  When I do have family visit, they come infrequently enough that to dole out a honey-do list also requires having to walk them through where things are, etc…..which means more work.  If there were an emergency, they are not enough of a trained listener to know what he needs if he tells them.   When a friend asks if they can watch your kids so you can get out…how do you explain that you can’t imagine asking them to change a 10 year old’s diaper ….or the fact that they probably won’t get to sleep through the night and need to keep one eye open when they are sleeping.   And sometimes people ask to help….they just don’t want to do what you do need….so their perception becomes that you are unreasonable or 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…..attention….We are thinking of ways to let her know that maybe this group isn’t a good fit for her…its 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….and 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.  (coincidentally, just the day before, someone sent me this video….I was able to share it and help her understand the impact she could make by just asking.   https://www.youtube.com/watch?v=T8qFqCFHQfE&nohtml5=False).  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…its 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 and 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…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……

5 Pros and Cons of IDEA: What Every Parent (and educator!) Should Know

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This tower is 4 years total of educational paper work for 2 kids and represents approximately over 300 hours of meetings, evaluations, reading and combing over data….JUST AS THE PARENT

I is for IEP, IDEA and Inclusion.

These three “I” words have forever changed me as a person.  If you have a child in special education, you probably just had a shiver run down your spine just by reading those acronyms in print and may be thinking the same thing.  All of these things serve as a blessing and a curse to our kids…and also to the educators and administration serving them.  Back in the day, the Individuals with Disability Act (IDEA) was enacted to refine and replace what few laws there were to protect children with disabilities within the education system.  It was meant to also focus more on the individual rather than on the disability itself.  IDEA has been re-written several times since 1990.  There are several things it does both in a good way and also in not such a good way:

  1.   It provides a free and appropriate public education (FAPE) to all kids regardless of disability at public expense.  The key word here being APPROPRIATE. The downside: There is a pretty decent chance that what you and your child’s test scores say and what you know is appropriate will be very different than what the district thinks is appropriate.  And most likely because of that other key word….FREE.
  2. Evaluations:  This law makes sure that children with disabilities are evaluated in a way that makes sense.  We don’t want to use one specific test to decide if a child needs special education services.  That way  discrimination is prevented and ideally, these evaluations serve as a tool to know exactly what they will need educationally. The downside:  Evaluations are only as good as the people trained to administer them….and only as good as the educator who can recognize an issue in the first place.
  3. Individualized Education Program (IEP): These are legal documents that establish goals, accommodations and modifications to the general curriculum and access to qualified professionals to ensure that a child with a disability is learning at the right pace and to his ability within their environment.  These plans level the educational playing field for those with a disability.  The heart of special education.  There are 13 categories under which a child may qualify: specific learning disability, speech and language impairment, blindness, deafness, hearing impairment, visual impairment, orthopedic impairment, traumatic brain injury, autism, multiple disability, other health impairments, emotional disturbance, intellectual disability,  The downside: Because they are legal documents and may be audited and are monitored on a quarterly basis, educators may have a very high self-preservation incentive to make certain your child is meeting his goals….at least on paper.  The more savvy the parent, the more tricky this can become.
  4. Least Restrictive Environment (LRE):  This ensures that your child is placed in an environment that meets his needs as independently as possible in an educational setting that is appropriate for him.  The goal is to work toward the LRE.   The downside:  For those of us with kiddos with Autism, this is not always cut and dry.  Especially those who are cognitively intact but perhaps have a language impairment or another issue which may stand in the way of independence.  An emerging issue in the field is for those kids who are considered “twice exceptional” such those who are intellectually gifted but with severe behavioral issues.  And what does “least restrictive” mean anyway?  My kid who needs 1:1 to learn can totally sit in a regular classroom to do that.  However, I believe my district interprets LRE to mean that he be in a contained classroom without a 1:1 because then he might have more physical independence in that room.  Who is right?
  5. Protections for your child…..protections for you as a parent:  Because of IDEA, there are procedural safeguards in place to make certain that your child is receiving the services the school says they will provide and a protocol to follow if you believe they are not.  Additionally, these protections allow for parent participation and child participation as an equal member of the child’s school team. The downside: Let’s face it…if you are not an educator…or even know where to go to get what you need, you will never be an equal member of your child’s team.   Procedural safeguards and parent participation are ultimately only as good as the questions you know to ask, as your attorney and your bank account.  The catch-22 if you do live in a very good school district?  There is a good chance that anything that goes to due process is going to take a LOOOONNNNNGGG time.  And think about that for a second.  If there is a FAPE violation and it works its way all the way up to a due process hearing doesn’t that seem counterintuitive for your school district to allow little old you to go to court with them?  Wouldn’t it make more sense to fix the problem as it would be much cheaper and less time consuming to do so?  It’s not.  At least not to them.  Because no matter how much the school doesn’t want to throw money at something they can still probably afford to pay a better attorney for much longer than you can.  And besides…the year and a half it could take…perhaps that child won’t need what it was you were asking for by then…or make your life complicated enough that you will break and succumb.   That seems like a pretty good gamble for a district.  And then it doesn’t set a standard for other families to ask for the same.

The last 25 years have been interesting ones for the education system as a whole.  When the parents who walked before us clawed and fought and struggled for these laws it was at a time before the internet, before all the revisions, before standardized testing existed in the way it did, before No Child Left Behind and before Autism was 1:68.  IDEA is necessary no matter how you slice it, however it exists in a very different system than it did in 1990.  At this point I know a lot of the law like the back of my hand and the parts I don’t know I am now educated on how to find those rules.  I have a list of socio-emotional goals for almost every developmental issue at my finger tips and I have an entire community of people going through the same struggles I am at the click of a button day and night.  All of this has been achieved through this tiny-huge world we have online.  I know exactly the gap closure between special education kids and regular ed kids not only for my district, but for my school.  I know the 6 payment tiers that exist and the formula used to calculate how much extra funding my district for each of my kids for using special education services.  I know what belongs where on all 13 sections of the IEP and how to make a goal measurable. And I know when I am being BS-ed by my district.  I don’t know all of this because of my training…I know it because I live in 2016 and any parent with a computer and the desire can learn the same.   In 1990, my school district certainly was not expecting 1 out of every 6 children attending (or 15%) to have some sort of developmental disability….or for the Autism rates to be 600% higher.   My child’s elementary school currently has about 700 students and about 100 IEPs (last I heard)…all while serving about 29% of their students as English as a Second Language with limited proficiency.  Teachers are stretched thin. Inclusion and LRE are so important for our kids future, yet most regular education teachers were not taught the basics on how to include and teach special ed kids in differentiated instruction or how to manage a classroom where there are multiple children with conflicting accommodations. (ie:  When Johnny gets stressed, he can crumple paper…but Jimmy’s auditory sensory integration issues make it impossible to keep it together when he hears paper crumpling….).  Parents are communicating, educated and knowing the legal hoops to jump through if their children’s rights are being violated.  It is a system that cannot hold itself up and still serve our most vulnerable children to be the most successful they can be.  Parents…please keep fighting for your kids….keep learning everything you can.  Educators…please do the same.  I do not have the answer….I am just hopeful it is found before my children have to move on from the “protective bubble” of IDEA and there are no grown up IEPs.

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 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.

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…..

26 Days of Autism Awareness from A to Z

Day 23In honor of Autism Awareness month in April of last year I started a project to raise my own awareness on my small little corner of Facebook by lettering each day A-Z and sharing a little bit what autism is and what autism isn’t. I have two beautiful boys both with Autism. They couldn’t be any different and while each have their unique challenges they also each have their unique strengths. Given how differently they present I thought it might be worthwhile to talk a bit about how Autism can manifest, issues facing individuals with disability and how Autism is a family systems issue.  My boys don’t just have Autism.  We are a family living with Autism.  Initially without telling too much, I shared how things might look a little behind closed doors along with a personal photo to my friends who might not otherwise get that glimpse.  But as the days in April passed and I became more comfortable with the safety of Facebook, a change took place with my friends on my page. Instead of the usual 20 or so likes I would get per post, I started getting hundreds. I also started to understand that perhaps the wrong kind of awareness exists. Friends and colleagues began to approach me to let me know just that and thanked me for my efforts. Acquaintances stopped me to ask questions. I had others quietly ask me for advice since they weren’t “out” yet with their concerns about their child.  And yet others were even apologetic telling me they wanted to help in some way.

Somewhere around “K” in the A-Z tale, my husband who is a private person changed as well.  Between the “likes” my posts were getting, the kinds of questions and comments being asked and he too was being stopped by supportive members our community he had a change of heart.  For the first time, he let me know that he was proud of us as a family and that he believed I was changing for the better through the process of writing.  I had not changed. I finally felt I had permission to be open.  The more he saw he could trust that I would still protect some of the more personal aspects of our life while still being honest, the more open and honest I could become.  The process was cathartic for both of us.  I asked my 12 year old to read and approve every post or blog pertaining to him and allowed him to be his 10 year old brother’s voice of approval as well given he does not have the voice to approve. My slow-to-warm, seemingly uninvested Aspie now looks forward to reading my writing and even asked to attend a large and lengthy public speaking engagement where I will be presenting.  Though I started with something on April 1st…26 days later I ended with something else.

April is Autism Awareness month…something that is like some weird little carrot in our world where every day is Autism Awareness Month. I erroneously thought “we don’t need any more awareness…unless you have not interacted with the world at all in the last 10 years…everyone has heard of Autism…everyone knows someone with Autism…enough already with the awareness….”. We need to DO something to help.   But as I found, most people who don’t live with Autism don’t understand it even though they thought they did.  And they certainly don’t hop on disability mom blogs to understand more. I don’t fault them for that. I would not either.  I am a mother of two beautiful boys. We live with Autism and other impairments here and apparently I was doing a wonderful job of walking through the world making it look like any other parenting…..and their differences looking like any other differences a child might have.  Though their Autism defines them about as much as their big brown eyes,  this projection makes everyone around us more comfortable but ultimately it becomes the elephant in the room.  Not just for those who want to ask questions around my silent insistence things are “just the way they are” but by letting my kids think that they are just like everyone else…when they are well aware they are not, leaving them wondering why their feelings are incongruent with the reality we try to portray.  So this year I will again start one more blog A-Z.  Its not everyone’s journey in Autism, but it is ours and it has been healing for all of us to say it out loud.