Sunday, June 10, 2018

athena blythe was perfectly named

athena- deity of the ancient Greeks worshiped as the goddess of wisdom, fertility, the useful arts, and prudent warfare. At her birth she sprang forth fully armed from the head of her father, Zeus

blythe-The word blithe means "carefree." It's a lively, sophisticated little word that many associate with Noel Coward's Blithe Spirit -- a lively, sophisticated little play. The spelling Blythe wraps all those good vibes up into an elegant English surname. This is an uncommon and stylish name

how do i start a blog post recording athena blythe's autism diagnosis? how is autism such an integral part of me life? how in the world do i have TWO kids with autism?

 athena blythe was diagnosed with autism this year. this diagnosis was much easier to obtain than reagan's diagnosis. we've had our concerns with athena blythe's development for a couple of years now but getting the autism ball rolling is often not easy. especially since, athena blythe's version of autism is so different that reagan's or what i've seen in most of the other people we know with autism. like they say, "if you know know person with autism, you know one person with autism". athena blythe has always been very precocious and very verbal and possesses an indomitable spirit but absolutely has other struggles in flexibility, impulse control, correct socialization. 
i'm taking the "news", which isn't news at all, in stride. i cried but not from fear. i cried because of exhaustion. i know what it's like to raise a child with autism. despite the differences in manifestations between reagan and athena blythe, the hallmarks of autism interactions are the same. it's stressful. very. stressful. i think of myself as a security agent who has to scan and secure an area before we can proceed. each place we go i have to check for loud noises, dogs not on leashes, sirens, clocks flashing 12:00, people not following expected societal norms, to ensure that we can proceed without incident. this is rarely possible. reagan still feels inclined to shout, "where's my mom!" whenever i am more than 15 feet away from him at the public library. athena blythe has never met a baby that she believes does not need her intense scrutiny and inspection. she has left no ladder unclimbed and no bird's nest left unpoked. why us? why autism? why not?

despite all my worries for raising two future adults with autism, they are pretty spectacular individuals. 

everyone knows and loves athena blythe. everyone. everywhere we go, people know her and have an anecdote about her antics and imagination. today, a pregnant lady at church pulled me aside and said that during primary athena blythe said, "i know where babies come from and that one is coming out of your VAGINA!" loud emphasis on vagina. she is too smart. 

the hardest thing to do is to discipline her. it's like breaking a boulder with a spoon. the spoon gets more damage than the boulder. she often seems unaffected by time out and loss of privileges. she'd rather win than have dessert. she loves to build and create and use all materials to do so. she will trick the best of them, including me, into getting her way. i love this girl so much. 

she insisted on sleeping on the floor on this miniature couch rather than sleeping on a real bed. it sounded terrible but she could not be deterred. 

 anything she sees on tv or a book she tries to recreate. we've made birdhouses and bird feeders and terrariums for lizards and chameleons that remain uncaught. she makes lists for baking and things she needs to find on a safari. she is best at sneaking away from responsibility. she is a terrible liar. but she still tries. you can't stay mad at her for long.

one of her many science experiments.

the three big autism struggles for me are:

1. people who think all kids with autism have a special trick or talent. my dental hygienist asked me this week what reagan's "special talent is". she didn't mean to be ignorant, but these special kids don't all have parlor tricks and memory games to impress other people. they're nobody's entertainment. 

2. people who act like kids with autism are a sign of weakness. things that are rewarded in society, thinking differently or being innovative, are often seen as habits to be fixed in autism. the problem is people who think there is only one way to be right or happy. it's akin to prosperity gospel, or the idea that faith is associated with financial success. does my having 2 children with autism mean i lack faith? hardly. if anything, my faith has only grown. but i encounter people who i feel pity from. no one is excited about having autism, but i pity people who don't see it as a blessing. a painful, messy, stressful blessing that has only shown me the nature and generosity of the Lord and His goodness. 

3. inclusion looks a lot like an invitation. often, that's all that is needed. certain activities are impossible for our family to fully participate in. we need to leave early or have many accommodations made so that we can more involved. i realize how trying that can be for people trying to befriend us. we've had so many marvelous experiences with people reaching out to us. the extended invitations means the world, even if it is difficult for us to accept. some of reagan's best memories are simply based on inclusion. "mom, i had that BEST time" is often repeated at an activity where reagan hardly participated and ignored half the guests. 

autism is not the worst. raisins in cookies, nuts in brownies, fruit in ice cream are way worse. 


Laura said...

You're amazing Heidi. You have said a lot of things I feel, but have a hard time putting into words. Logan's version of autism is somewhat similar to Athenas. The impulse control, he tries to be like every character that he likes. which is usually the bad guy lol... the things he says to other people that must sound so bizarre to them, he's a terrible liar but still tries. Your boulder and spoon analogy is spot on!! And then some. It is so stressful, and hard, and sometimes amazing. There are things we get to learn as parents that others dont.. like having nerves of steel and the patience of a saint, otherwise we'd end up in prison or an insane asylum. I love my boy, and I will fight for him until I can't fight anymore. It is hard. So hard. But we can do hard things! God gave us our children for a reason, and someday we'll understand it all and will be grateful for our experiences. Love you!

Anonymous said...

Your children are so lucky to have your insight and advocacy.

I'm pretty sure that one of my adult children would fall on the spectrum if he tested now. When he was two years old, we were in a playgroup and he could not fit in, make friends, or do regular kid stuff. I finally gave up because I felt like an outcast because he did not fit in. He's super smart and truly wants to help people, but he cannot read social cues or control his impulses. He was never invited to parties and never really had a regular friend. As his mom, I am heartbroken and lost. Your post helped me realize that the hardest part of parenting this one is dealing with other people dealing with him. It is not that he is hard or bad. He is pretty amazingly smart and creative. But at times I ache for a little normal interaction.

Jessica said...

raisins in cookies? yuck -- I totally agree. but nuts in brownies and fruit in ice cream??? those are delicious!!! I love this post. and I especially love how lovingly you phrased it as 3 "struggles" rather than pet peeves or things that drive you absolutely nuts and/or break your heart. you have the strength of an amazon warrior. doing hard things makes you strong. and you've been doing lots of hard stuff for a really long time. I look up to you. your faith and love is a beacon of shining light. your kids are super lucky to have you as their mom.

Lindsey said...

I think you are a great mother no matter what stage of development your children are at! Thanks for sharing!

HJolley said...

The fact that she can sleep on a mini couch instead of a bed kinda made my jaw drop. Ouch.

She's awesome and Gwen's absolute hero.

I feel like she and June are so different but now I know where they are similar--making things they've seen from TV. This is daily life! What fun crafts they could do together!

Sarah Beck said...

You're a great momma, Heidi.

Autism is hard. It's exhausting. But these kids are so wonderful and have such great, endearing personalities. Autism teaches me so much about myself and humanity, and I'm sure you feel the same way.

My heart melts every time I see pictures of Blythe on your blog or on Instagram. She's such a beautiful girl--I love her deep brown eyes and freckles. She's got such spunk and personality, and I absolutely adore that.

Rockstar is an absolute requirement to be an autism mom. And you're definitely a rockstar!

Melissa said...

No fresh raspberries with Graham crackers mixed into your shake?! Sad indeed. But, you are one amazing woman. I'm so glad those beautiful children have you as their mother and you have them. Keep fighting the good fight. You have my full adoration.

Emily C said...

Heidi Beck Simpson - a woman of MANY remarkable talents. Patience, optimism, love, humor, writing, warmness, relatablity, brilliance. You cease to amaze me. You tackle exhaustion and patience with grace, plenty of grace - and whit of course. I love you and your cute little crew so much!!!

Ashley said...

I'm having Landyn tested - just waiting for an appointment to open up for her. Parenting her has been the most difficult thing I've ever done. Prayers for us all. Thank you for your blog and for sharing.