Thursday, April 3, 2014

Autism is not... What the Bible has to say about Autism

4/2/15 I wrote this last year, on Autism Awareness Day.  It has been a long year since then and I have some thoughts to prelude this post with:

"Awareness" is bittersweet. All this awareness has made autism a common household word. That fact does NOT make people any more INFORMED about what it is - or how it impacts lives. People are now so familiar with this word they undervalue the significance it has on those with autism and their loved ones.

I've heard "Oh, at least it's JUST autism," "they are so high-functioning," "she doesn't look disabled," or "they are working on fixing that," and, most often, "Your parenting is enabling your kids, they don't actually have a REAL disability." These things take away from the truths my family deals with daily. It takes all the focus away from how hard my children work to meet the standards we have set for ourselves.  Although I have high expectations for my children, that must be balanced with accepting their LIMITATIONS. 

Those with Autism are more than a label.  So while I respect the concept of an Autism Awareness Month I reject the motivation (to cure) and the outcome.  People donating money to groups dedicated to "curing" and "fixing" autistic people, convinced they must change these people and normalize them to coexist in society are funds wasted on stripping them of their individual brilliance. Watch this video for more on why Autism Speaks is a hate group. 

Seriously. This isn't a cancer, some medical condition, or disease to CURE. My children are honestly blessed to be autistic. (And my marriage has been strengthened in this journey.) They have everyday challenges that are very REAL; struggles that are exhausting for all of us. But all of it contributes to their character and the amazing people they are. (Despite all the complaining I tend to do.)

There are many REAL ways to support autism - to give them the tools they  need to achieve their goals while allowing them to be exactly who they already are. So if Autism Awareness means education, then I am all for it. 

Here are great ways to support people with autism and their families: Love them. Just as they are. Accept the grocery store tantrums and the rigidity in playtime, and the meltdowns over "painful" clothing due to sensory issues. Hug them - for my children a good squeeze hug is the best medicine of all. Take their mom out to coffee (trust me, she needs it almost as much as she needs a nap). Have them over for a playdate even if your kid does think they are a bit strange. 

Talk to your friends who have autism (or parent someone who does) as if they are no different than you.  And when they desperately want to say "I'm so different and it can be difficult" then talk about that too. Because that can be hard for us to say. We are a fickle breed.  

--- Original Post: April 2, 2014 ---

Autism is not a badge of honor. It is not a contest ("my child is more disabled than your child"). It is not a burden. Autism is not an "overdiagnosed" or "fictitious" disorder. It was not "created by the medical community to sell more drugs." It is not an "excuse for bad parenting." It is not merely a label. It is not one size fits all. It does not define someone. It is not a disease needing a cure.

As is typical of me, this will be far too long. I have far too much to say. I envy the ability to be pithy and simple, to say much with little. But as an "Autism Mom" here is what I want you to know:

Today is Autism Awareness Day. I am passionate about learning, understanding, and celebrating the differences that make a person on the spectrum so unique and so special.  But as I sat to write something that could put into words what I want others to know, I was stumped. If you know me at all you'll agree I'm not often lacking for words, so to feel so strongly about a topic but silent on how to express the feelings is a rare occasion indeed.

It is in part because I need more awareness.  I am not on the spectrum myself.  I have my own quirks for sure, but would say my struggles are more in the mental health arena (think: OCD, lacking emotional regulation, lifelong depression, bipolar...).  Most of the awesome people who live with me do have autism though. This often makes me feel like an outsider in my own home - on the outside, looking in through a fogged up window.  

I want to understand my children and use that to be empowered as a parent to give them everything they need to succeed.  When I say success I am not trying to conform them to the definition the world uses.  I only intend to teach them to love God above all else and to love themselves as well, just as they are. Just as I desire to be loved for who I am, not what I am capable of or what I may achieve. 

I am working daily on understanding the minds of my children so I can be who they need me to be for them. I am not naturally patient - I am ever multi-tasking and processing things at lightening speed in an effort to waste no time. God has blessed me with children who require I learn patience.  I have the opportunity to come to God daily to be equipped for the task at hand.

Things that come easily to me may not to my children (say spelling words, for example, or the ability to spot an object in front of me when there are multiple other objects competing for my attention). Their struggles are very real and impact how they interact in the world, how they learn, and how they show emotion. Since I do not have many of these struggles so much myself, it took me a long time to be the Mom they need me to be.  I was too busy working so hard to "fix them."

I needed awareness, just as many others do.  These amazing kids of mine? They don't need fixing because nothing, NOTHING is "broken." There is nothing "wrong" and no disease to "cure." Getting them the help they need to be the best versions of themselves does not mean changing them.  It means enabling and strengthening them.  What amazing brilliance, intelligence, and creativity this world would have missed out on without Autism!

So, for me, awareness means giving them coping tools, adapting their learning environment to fit their learning style, adapting the way I parent and discipline them to suit their own individual needs. It means accepting that my daughter needs to twirl, and dance, and jump, and hop, and move, and sing when I desperately want things to just be still - and silent. She has inherited my musical & dance/coordination inabilities and my first reaction is, if I'm honest, embarrassment - with a little frustration mixed in. But it makes her happy. Just like coloring with her headphones and iPod on calm her. It is similar to my desire to binge-watch Friends episodes and eat Sour Punch Straws...

Awareness for me looks like providing a safe, accepting, sensory-friendly environment for my children to learn, grow up, and know they are unconditionally loved. So I beg their forgiveness as they deal with my learning curve, my imperfections, and my ignorance as I plug forward. 

[Not as glamourous as a leather sectional, but these chairs meet their sensory need to feel "hugged" and to bounce, move, and fidget much better.]

[Bruce is really into getting into small spaces - like this toy box or that basket of laundry he dumped out.]

There were days I wish I had a sign "Autism. Kindly quit staring & judging." I realize this is FOR ME, for my benefit.  I care far too much what others may think of me, my children, or my parenting skills.  As I embrace every difference that makes my children so amazing, I am learning to care less what others think.  What matters to me now is what God thinks and that my children KNOW I love them. I like them. They are beautiful the way they are.

Here are some things I'd like you to know, in my effort to celebrate "Autism Awareness Day":

-Autism is not a punishment from God. It is not the result of sin in this world. It certainly does not need to be "cured" like this guy thinks. That perspective makes my blood boil. I have encountered those who "helpfully" let me know my children simply need more spanking and stricter punishment. I cannot spank the autism out of my child any more than I can slap the ignorance out of you! My children need healthy boundaries, consistency, routine, and for me to learn how they operate and respond. This is really no different than any other child.

Scripture clearly tells us we are made in His image, for His glory, and by no mistake or accident. For those of you who do not know my daughters let me assure you - they ARE living for His glory indeed!

[Sat down to breakfast one morning and found Taylor's notebook open, this poem to God written on it.]

Psalm 139:14 "For you formed my inward parts; you knitted me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." 

John 9:2-3 "His disciples asked Him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him."

Exodus 4:11 "Then the Lord said to him, “Who has made man's mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the Lord?"

Autism is not a contest. Please stop saying to me "So and so is more disabled." or "Blah blah's kid has worse autism."  Understand this: First, autism is not a disability.  It is an ABILITY. Second, being on the spectrum is hard in many ways because you see the world a bit differently, feel things a bit deeper, and struggle with things that are a norm or come naturally to others. Having autism is always a challenge and just because every. single. person. with autism is different than any other does NOT mean one is "worse" than another. Or that higher functioning autism means there are no challenges at all.

Third, although all my children are verbal (well, except the baby, but he's only 14 months, he'll get there) and intelligent, and creative, and mobile, and (mostly) toilet-trained, does not make life EASY. At least not for me as the mom. I am wiped out. I struggle to simply exist. So pretty pretty please don't tell me how easy I have it, how much "worse" some one else has it, or how lucky I am that "at least your kid can such-and-such." If you do, I may have to go ahead and punch you in the throat.  I mean, with all that spanking I'm not doing I've got to direct my physical aggression somewhere right? :) 

Also, Autism is not invented or over-diagnosed. ADHD is not a pretend disorder parents use as an excuse to sedate their children with calming pills because they are lazy parents. (Oh, and sometimes changing a diet alone or dousing them in essential oils is not enough to help them.) I see firsthand how real the challenge of over-stimulation and inability to focus is.

It is people like that that have held me back for so long from being the parent my children need and deserve. I had been trying to change them to fit into the way the rest of the world operates when the world should conform to them - because they will be the ones who really change it!

It is people like that that have caused me to have such a lack of support and education.  I wanted to fit in, to raise my children the way everyone else is even though typical strategies are not what work for my children. It is people like that that have made me lonely. Judgment for a life you do not live and cannot understand has hurt my feelings. I am not always strong enough to be the Mom they need when others judge, because I do have low self-image and struggle with a desire to be liked and earn my place to exist in this world. 

Do not tell me my child "does not look autistic." What does that even mean?! There is not a "look." If you meant it as a compliment, thanks. It was hard work getting here, to where you see us now. For the parents and the child. That said, having autism is not about looking different than most of the world - it is about thinking, feeling, and operating a bit differently. In a good way - because life here, with my children on the spectrum, is never ordinary or dull.

[I never want a world where THIS is not my life. Where the house is arranged into rainbow, numerical, or alphabetical order and is covered in maps. Yes, maps are my son's obsession. I love this version of life, the one where my kids are transformed by a simple weighted blanket.]