Celebrating an Autism Diagnosis 

Today is aflutter of St. Paddy’s day excitement and all the buzz of the new Beauty and the Beast movie premiere, controversy and all. In the midst of the celebratory excitement and chaos, we have a celebration of our own going on at our house.

March 17th marks a special day that is all our own– more specifically all my son’s own. This year marks his Three year autism diagnos-a-versary. Today, we choose to celebrate.

Three years ago our family was overwhelmed with brochures, charts, graphs, and “it’s a rough road ahead” dispositions. We were primed with all the classic fearmongering that is piled on thick by the go-to “autism awareness” organizations that are presented with such bright colors in the diagnostic process.

As newbies to the “parents of a disabled child” circle, we did ascribe to some of these leanings for a time– before we knew better– although it never really sat right with us.

All the resources put in front of us were so much about making us, the parents, feel comfortable and had little to nothing to do with our autistic child. It was as if he was an accessory to our lives that we could mix and match as we see fit to achieve a perfect look.

In this third year in autismland, I must say the best thing we have done for our son as neurotypical parents is to listen to the voices (or writings) of autistic people.

We must move from awareness and even acceptance to celebration. In Amethyst Schaber’s moving keynote linked below, she describes how autistic people don’t need to just be tolerated or seen as acceptable, they need to be celebrated.

And frankly, the idea of celebrating autism as a neurotype causes a lot of upset in some people. The able bodied majority has created a culture that sets up disabled people for internalized ableism. It’s gotten to the point that the only context we allow ourselves to even see disabled people is through inspiration porn colored glasses. Why is it that we are okay with erasing disabled lived unless they are objectified for our inspiration?

I believe this is why celebrating autism is so offensive to able bodied people. For some reason we think that to celebrate is to diminish struggle, difficulty, and even despair. What life, disabled or not stays on one side of an extreme? I love this except from an article by nonverbal self-advocate Amy Sequenzia who writes:

I celebrated being Autistic and disabled, with everything that comes with my disabilities, epilepsy included. Even though autism and epilepsy are two separate things, they are part of me and I cannot celebrate my life with one, and not another.

To celebrate any life, is not to erase or sweep our struggles under the rug.

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I Tried to Act Normal. Worst 10 Minutes of My Life.

Walking through the chaos, without exception, we celebrate everything that makes you our churrito!
Happy diagnos-a-versary, monkey!

♥ MM

Why I Can’t Afford to be a One Issue Voter

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To say that this election season has been ungraceful would be a gross understatement. It’s been a doozy. For me it’s been a mirror of sorts, and a mortifying one at that. Those who have known me for a long time would look at the comparison of me 5 years ago and now they would say, “What happened?” I can identify with this explanation.

You see, I too used to be a evangelical one issue voter, that one issue being abortion (although the “sanctity of marriage” is a close second). So I can identify with the reactionary righteous indignation at any platform or candidate that hints otherwise from my conservative friends. I see you. I was you. I have spent more then half of my life aligning myself with and participating in pro-life activism on the evangelical front.

I could afford to be a one issue voter. I was young, white, and privileged. I had barely started living my adult life and I was sheltered from how cruel life can be. Never did I contemplate to what detriment such tunnel vision could have for those outside my particular demographic. After all, what greater cause is there than life? What more vulnerable life than an unborn baby? It just made sense. I was able to read between the lines of “vote your conscience” and “choose life” to understand that the Christian churches and school I attended believed that republican = good and democrat = bad.

I didn’t make a 180 turn around in my political leanings in an instant. It was a gradual “How could I have been so very selfish? How could I not see?” However, it didn’t come without shame. I am ashamed to say that I didn’t even vote in the 2012 election because I was so nervous about what the outcome of voting blue would mean in my various professional and social circles at the time. It has been a sobering journey to come to grips that I no longer fit the mold of that conservative evangelical  ideal.

The unique thing about the 2016 election is that with our candidates, this isn’t even a question of who the moral candidate is, because frankly there isn’t one. What we do have is one candidate who is qualified to be president and one who is not.

Could it be that this tunnel vision on abortion is actually contributing to more abortions and not less? When confronted with facts, would the far right rather have a “pro-life” candidate that is tough on legislation while having higher abortion rates or a candidate that believes in a woman’s right to choose with lower abortion rates? The evidence seems to suggest that the numbers of abortions go down under democratic leadership. In fact, the abortion rate has dropped by 13% under the Obama administration.

It is easy to jump in wholeheartedly to one issue politics when many of the other issues don’t directly affect you. As a young conservative I never would have thought twice about social programs, race relations, disabled rights, or immigration (just to name a few). I regret to say that I was so absorbed in my evangelical circle of being in the world and not of the world that I didn’t see how considering a narrow focus to be a virtue could hurt my fellow human beings nationally and around the world.

I took some punches from the real world that shook up my political foundation. All of a sudden, I could no longer minimize the challenges that single mothers face to a simple point of rhetoric. I was living it. Gaining friendships with undocumented people and eventually marrying one forced me to take a hard look at how cold the stance on the right is on immigration. I could no longer feign detachment even if I wanted to, in respect to the real issues  undocumented people face. I held my breath when my husband (then boyfriend) was detained by border patrol merely on racial profiling. There was no cause to hold him and he was in the final stages of obtaining his DACA  certification.

When my son was diagnosed with Autism, the stigmatizing cure culture rhetoric of the GOP could no longer do for us. When the Clinton campaign recently put this ad out it was a painful reminder that it took me having a disabled child to start truly giving a damn about this issue with my vote.

In fact, if you look at Donald Trump’s website there is not one single mention of any type of plan to benefit disabled people. If you can find one, I would gladly edit this post.

This mirror, this 2016 election season has been a tough one for me to look through. Maybe I was more self-centered than most one issue voters, but it is clear to me that the danger of such tunnel vision is not worth the risk of continuing in this vein. When I was a one issue voter, I clung so tightly to my ideals, even to the point of cutting people out of my life that would dare take a counter stance to what I thought a good Conservative Christian girl should believe. Ironically I am finally empathizing with the frustration that my liberal friends must have had at my inability to see how I was so completely missing the point even though my intentions were pure.

In the midst of the chaos I see a lot of discussion cautioning that we should be careful not to lose friends over politics. Generally I would agree with that. It is absolutely possible to see the worth, value, and potential of people who don’t agree with me politically, but when clinging to the narrow scope of one issue politics means that you are okay with racism, sexism, homophobia, and ableism, one must ask themselves, “Is this a healthy friendship to have?”

Even today I am restoring relationships that I destroyed because of my close-mindedness. I am humbled that they would be interested after what damage my intolerance had wrought. As for this election, I am a different kind of one issue voter entirely.

♥ MM

3 Picture Books That Promote Autism Acceptance

I read a lot of children’s books. A LOT. In fact, so far this year 84 out of the 95 books I have read  are children’s books. 80 of those 84 are picture books. However, it never occurred to me until recently to start searching for books about autism inclusion/acceptance (at least not children’s books). It turns out there are quite a few out there!

I will admit that I am more critical of anything written on the subject of Autism/Neurodiversity because as a neurotypical, even though my child is autistic,  I don’t see the full picture. Therefore,  I try my best to align myself with the ideals of actual autistics. Their voices are the most important for our world to embrace full inclusion and acceptance. I wanted to write a little bit about my top 3 favorites  that I have read this year.

1. Different Like Me by Jennifer Elder

diff like me

This book is geared towards ages 8-10 because there is a lot of text on the page. It is narrated by an autistic boy named Quinn. In the book you will learn about some famous people who he can identify with because they are “Different Like [Him]”. It’s not possible to know if every person that he talks about in this book had a black and white diagnosis on the spectrum due to time period that some of these people lived, but the significance of the book is how Quinn is able to see a part of himself in the lives of these inspiring people. Some of the “autism heroes” in this book include, but are not limited to: Lewis Carroll, Hans Christian Anderson, Andy Warhol, Albert Einstein, Isaac Newton, Temple Grandin, and others.

2. I Love Being My Own Autistic Self by Landon Bryce

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I love, love, loved this book! I wish I could place this book in the hands of anyone who interacts with autistic adults or children on a regular basis and have difficulties understanding their challenges. The presentation of this book is geared more towards children, but I think that there are many adults that need to read these truths. What I love about this book is the honesty that there are differences in the autism spectrum both good and bad, and that’s a part of what makes us all human.

There is a common misconception that people who are pro neurodiversity and who push back against the grain of cure culture think that autistic people are superior to neurotypicals and allistics. This is simply not true. Above all the emphasis on inclusion of autistics especially when it comes to neurotypicals trying to further their understanding of autism is such a great component to this book.

3. Why Johnny Doesn’t Flap: NT is OK! by Clay & Gail Morton

johnny

I got this book as a gift for my son’s 5th birthday. It is usually difficult for me to find books that capture his attention, but this one did. So many times in books or in the media when it comes to minorities or the disabled, all energy and focus is geared toward the neurotypical (NT) person. I saw this a lot in some of the picture books that emphasize the relationship between siblings where one is NT and one is autistic.

This book makes you want to throw the word “normal” out the window because NT’s can seem just as unusual to someone on the spectrum even though it’s usually presented the other way around. When I first heard about this book, I thought it was a spoof of some sort. However, having read it, this book will seem a little humorous to NT’s but it actually is informative to kiddo’s on the spectrum. Not every person on the spectrum is going to fit exactly into the mold of the characteristics described in this book (for example my son is autistic but he loves to play with other kids). Overall I think that this is a great picture book to show autistic children that we are all different and that’s ok. We just need to accept each other.

♥ MM

*Disclaimer* While I loved Why Johnny Doesn’t Flap, I do not recommend following the book’s fb page because I did find some of the content ableist in nature and offensive.

What are your favorite picture books about acceptance and inclusion? Comment below!

 

I Was a Cookie Cutter Conservative or, The Trouble with Looking Outside of Your Christian Bubble

On this Super Tuesday tensions were high as 13 more states rushed to the polls to make their vote heard for the 2016 race to the white house. Today I have been reflecting on my past political self living inside of the Christian bubble in hopes that my Christian brothers and sisters do not make some of the same mistakes or judgements I have made — all in the name of Jesus, of course.

Hello.
My name is Amanda and I am a recovering conservative.

Let me explain what I mean. If you now or have ever considered yourself a part of the Evangelical Christian community or tradition there are probably very specific images that come to mind when you hear the words “conservative”, “right-wing”, “republican”. And they probably make you feel warm and happy inside.

spongebob

Now close your eyes and think about the words “progressive”, “left-wing”, “democrat”. As someone deeply immersed into evangelicalism in the bible belt, a very different picture probably comes to mind, complete with flames and pitchforks.

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It’s true.

I suppose that you could say that it goes both ways on either side, but I just want to tell my story. Growing up in the church even at a very young age, when it comes to politics there are really only two issues that will be consistent pulpit fodder: abortion and the “sanctity” of marriage. At each stage of my evangelical experience the “pro-life” cause resonated deeply with me and reverberated from the core of my being. I was devoted. From holding Rock for Life signs on the side of the highway at 9 years old to being deeply invested in my local Bound 4 Life chapter at 19, all the way through college I was known as “that pro-life girl.”

Almost to a fault. As early as middle school I had friendships sour over political discourse. I was so black and white on issues that I wouldn’t ever entertain a grey area because everything I ever heard from the pulpit was life or death. No need to investigate further. You may as well be on trial for any stance that wasn’t red. Even when I went off to bible college we were told to “vote our conscience” and to “choose life” since it was a conflict of interest to come right out with an endorsement of a party. Teetering on the edge of blue was taboo and I soon found myself go so far as to even question the salvation of friends who were more moderate. It would seem that there was no eternal hope for my friends who were self-proclaimed bleeding heart liberals. When an organization you respect is cheered for mottos like “You can’t be a Democrat AND a Christian”, it’s easy to become a pious ass.

It’s easy to run wild with these two issues when you don’t look outside your comfortable Christian bubble. Before I go on, I do want to be clear on something. Although I no longer consider myself conservative, I hold fast to the idea of personhood and I don’t take that lightly. I believe that ending a viable pregnancy that poses no risk to the mother’s life is unethical. However, pregnancy is unpredictable and we should not be quick to cast judgments when the decision is not (and should not) be ours to make. This is where the distinction needs to be made between pro-choice and pro-abortion because you can be anti-abortion and still be pro-choice. This is where my liberal friends may disagree with me.

In defense of the conservative pro-life movement, I will say this– in my 15 years being involved with multiple anti-abortion organizations and events that I have been a part of, including “sieging” outside of abortion clinics and participating in solidarity events, don’t believe the hype. The media wants to portray these individuals as hateful zealots towards these women. I know it exists out there, but every single person that I know personally who invests their life into this cause would lay their lives down for these women. “It’s not a protest, it’s a prayer meeting.” is the motto of the organization Bound 4 Life, and I think that the distinction between prayer and legislation is where the political right gets it so very wrong. The legislation on abortion is irrelevant when conservatives do nothing to change the outcome of these women, and in fact hinder them from getting the support that they need.

From a Christian perspective, it is absurd to think that legislation will change the actions of the people. Think about it. The same people that say that making guns illegal won’t stop people from using them are campaigning to make abortion illegal in efforts to stop abortions from taking place. And no matter where you stand on same sex marriage, the legislation we try to put into place to protect our herero-normative view of the nuclear family will not change the sexual orientations of LGBT folks. Even God gives us the choice to choose Him. Christians should know more than anyone that a set of laws does not produce change any more now than it did for the children of Israel in the wilderness. Once I started peering outside of my tidy Christian bubble, I started realizing that the way that I perceived “choice” was not only biased, but  significantly flawed.

It was easy for me to be a cookie cutter conservative in my privileged bubble where I didn’t really have to think about issues other then those pertaining to religious focus groups. But then life had to ruin everything. When I became a single parent, suddenly I breached Christian protocol. I had to look outside of my safety net. I became a single parent while I was pregnant, folks. Now, I never entertained the though of abortion, however I began to empathize with the hopelessness that women who found themselves in my shoes must feel. I learned that not all single parents are bottom dwellers of society, leeching off of taxpayers. I was one of them, and I was a full time mom, full time college student, and had a full time job, and it still wasn’t enough. The shame I felt was a result of the same stigma I used to place on people that received government assistance.

Then I had to go fall in love. The trouble with that is that I fell hard for a charming (is there any other kind?) Mexican who happened to be undocumented, so I could no longer ignore my indifference on the despicable, hateful stance on immigration that the right has to offer (not to mention the xenophobia we relish on our fellow humans in the middle east). Falling in love with a man that treated me as an equal and not as a subservient counterpart made me realize how abusive Complementarianism (a pretty word for Patriarchy ) is in the Church and how God’s design was always for equality. Now I was in really deep! How could I ever reconcile this with the inexcusable apathy for equal pay in the workplace that is ignored over and over again by the right?

Just before my son’s Third birthday, he was diagnosed with Autism and I instantly became an ally for the Autistic community. I was soon dismayed to find that the legislation on the right caters to a cure culture that seeks to find a way to “solve the puzzle” instead of trying to accommodate the autistics that are already here and are wondering when they will be valued instead of seen as challenge for science to find the answer to.

What. A. Pickle.

I didn’t rush to declare a new political affiliation after these events ran their course. All I knew was that I could not go along with the agenda of the conservative right with a clear conscience any longer. If that makes me a trouble maker in the eyes of the evangelical community, so be it.

This is not a plea to my conservative friends to change their political allegiance, however I would ask that you try understand that everything is not always as black and white as it seems. I have burned many bridges in the past by being so ruthlessly rigid. It would do us all a bit of good to stop looking so far inward that we forget why we are here in the first place. Whether we like it or not, we need each other. We are better together, warts and all.

♥ MM

 

 

 

 

 

 

A Plea to Stop the Special Needs Pout

Pout by MeganAndHerDocMartens, on Flickr
Pout” (CC BY-NC-ND 2.0) by MeganAndHerDocMartens

As many of you know, April is Autism Acceptance month. My— how this year has flown by. Our family officially began our Autism adventure about a year ago and everyday is a new journey of learning. Through all the challenges and tears along the way, our boy has taught us much laughter, color and joy without needing to say a word. Our society has also taught us a thing or two–sometimes helpful, other times hurtful or wince-worthy. Anyhow, we try to be graceful and carry on. With May right around the corner, I would like to commission my fellow humans with a heartfelt plea to carry Autism Acceptance with you beyond this month of acceptance and awareness.

This may seem small, insignificant, or even downright nit-picky. I am talking about the special needs pout. To my fellow parents of disabled children, you know the one. You can feel it coming in your day to day interactions with humans and hope that it won’t. In any given conversation there’s always the potential that those two little words will elicit that grimacing pout–Special Needs.” To anyone else reading this, maybe you have unknowingly been guilty of that  “aww pobrecito” whimper. Don’t worry, I forgive you. It’s a journey of learning, remember?

I urge you brothers and sisters, with all the love in my heart, please stop the pout! This seemingly small, seemingly insignificant act of omission would contribute to the bigger picture in the  Autism community. How is this important? Why does this even matter?  I’m glad you asked. I’m not claiming to speak for every parent or loved one of someone with a disability, but I know that any time I have a conversation that inclines me to introduce the topic, I am taking a risk. The way that you react when someone feels safe enough to share a piece of their Autism journey speaks volumes. When we are met with “I’m sorry!”, the idea that disabled people are a burden or a tragedy is reinforced.

There is such an abundance of ignorance even with every passing year of “awareness” that really end up just contributing to  fear mongering attitudes and pity surrounding the Autism Spectrum. You hear things like “combating autism” or “epidemic” that paint a picture of a war zone where our children are the enemy. Our children don’t need pity or the degradation that comes with person first language– as if to say we could only love our children if they were separated from their autism.

So please, can we save our pouts for our Facebook selfies and fashion runways? I love and welcome questions. I admit I am a newbie myself to this adventure. And try my best to be graceful when ignorance comes knocking at my door. But this is one small step we can all take to evoke a positive change for the disabled community.

♥  MM

Remedy Your Ignorance

In the spirit of April being  Autism Acceptance month I feel compelled to share a little something as I am  at the beginning of this journey myself with my family.  On March 17th what my husband and I already suspected about our son Matthias was confirmed. We received a diagnosis of Autism Spectrum Disorder (ASD). From the early signs that we saw in Matthias to every step along the way that led to this “on paper” confirmation, I felt this cloud of uncertainty. Something I have learned in this process thus far is that our society is absolutely IGNORANT when it comes to autism… and so was I.

As a parent facing the unknown with a young child, you get your hands on any kind of information possible… both good and bad. Every resource tells you what you should be thinking and feeling and how you should react once the diagnosis comes. It seems that the path for a parent of a child on the spectrum should take is the following — curiosity → concern → anxiety →fear → guilt → settling → and finally some twisted form of acceptance, most of which are fueled by ignorance.   You should feel a sense of loss, they say. It’s only normal, after all. You should allow yourself a period of grieving over the future you envisioned for your child passing away. In an article from The Examiner they state that Autism Acceptance sounds something like this.

“I accept the fact that my son has autism.  I will never be happy or content about it, but I accept that there’s nothing I did to cause it, and probably nothing I could have done to prevent it.  Now I need to move past the grief and work towards our futures together.”

Garbage.

Throughout all the ups and downs and the Molotov cocktail of emotions that have accompanied me on this journey so far, I have never felt the need to grieve the fact that my son is autistic. What I have felt is the need to grieve for the world that we live in today and all of its ignorance towards individuals that are on the spectrum that tries to put a limit on what these amazing individuals can do. I do not fear for the future for my son. He can do and become whatever his beautiful heart desires. Autism is not a label, it’s a part of what makes him who he is. He’s not damaged,  he sees the world through a different lens and that’s okayHe is different, not less.

In retrospect, I think about friends that I had as a child who were autistic and how little I understood… or worse how little I cared to reach out and remedy my ignorance. I was only aware of one kind of “normal”,  but now I am learning more  everyday and I don’t want to stop.

We recently had the wonderful experience of getting to take part in this amazing organization A.Skate which serves individuals on the Autism Spectrum through skateboarding as a form of therapy. We went to our first skate clinic in Austin, TX on April 6th and Matthias had a blast.

mattie askate

Here are some resources for you if you want to learn more about ASD and Neurodiversity.

To begin, here are some myths about autism.

I would also recommend this book if you want to remedy your ignorance too 🙂

It’s Autism Acceptance Month.

Reach Out

♥ MM