Mama Has Lyme

mama has lyme“Does your child have any special challenges I should be aware of?”

Two tiny blank lines staring at me, enough for maybe three sentences if I wrote very narrowly. Yes, Aidan is on the autism spectrum, and has a variety of specific learning challenges in the classroom, but there was already an IEP file explaining these things at length. There wasn’t space here to revisit those again.

“Does your child have any special challenges I should be aware of?”

Two tiny blank lines, waiting for me to explain. My face was beginning to flush and I could feel the fog in my brain growing thicker as I grew more and more flustered trying to turn thoughts into words on this cheery yellow paper. The neuropathy in my hands was making it harder to grip the pen and I could see the words on the page start to shift out of focus the longer I tried keep them in view.

“Does your child have any special challenges I should be aware of?”

I scribbled out lightly, “Yes, I have Lyme disease.” [Read more…]

Terrorism, Tragedy, and the Autistic Child

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With the news from Paris on every channel and reports of horrible acts of terrorism splashed across every headline, the anxiety can weigh especially heavy on parents with small children at home. For parents of children on the autism spectrum attacks like these bring a whole wealth of additional challenges and considerations. My son Aidan, for example, has been able to read any newspaper headline with ease from about the age of 3, so shielding him from events of terror has been nearly an impossible feat. And since he is already prone to severe anxiety and oversized emotions, and both his age and his diagnosis cause him to struggle to understand complex social constructs like religious extremism or even politics in general? Events like these have the potential to rob him of much needed structure and security and plunge him into total chaos. Here are some valuable tips for helping these special kids cope with such difficult issues.

Resist the temptation to be anything less than honest.
It can be easy to fall into the trap of fudging the truth to keep our kids from their fears. Why not simply answer questions about unimaginable evil by somehow explaining it away all together? Although this tactic can buy some quick relief in the short term, it creates much bigger problems in the long run – especially with these children who often have extraordinarily gifted memories. Set a history now of being an honest communicator with your child when they have questions or concerns, rather than risk being permanently characterized as likely to offer less than truthful information.

Avoid offering extraneous details – stick to the facts.
Sure, we might see the clear connections between terrorism and religious extremism, or see how the history of US politics in the Middle East may contribute to modern day extremism, but is this all necessary information for a child who’s seeking to get their mind around some already complex ideas? When your child is presented with details of an attack or asks a question about something they have read or heard, its important to address only their specific area of inquiry and not offer any new information into the equation. Keep it simple, with age appropriateness in mind, and wait to see what their next questions may be before offering up new info unprompted. Your child may be satisfied with far less information than you think.

10173594_10152161556649818_2724005321082070142_nProvide safety in routine.
It can be tempting to try to appease difficult emotions with treats, privileges, or even easing off on normal requirements and expectations, but for the autistic child this can actually make the situation much worse. Provide comfort by sticking to familiar routines and predictable boundaries. When your child see’s that everything is still normal on the home front, it helps reinforce the idea that their world is still the same as before these terrible events, and that they don’t have to worry about total upheaval. Life will go on, and a strong routine is the best way to communicate this right now. 

Be vigilant about media exposure, but give yourself a huge measure of grace.
Children on the spectrum have a wide range of skills and areas of struggle, but many of these kids have hyperlexia, which is marked by not only unusually advanced reading abilities but a often a compulsion to read any and all written materials around them. It can be next to impossible to shield these kids entirely from events that are dominating the current news cycle. Give yourself grace and be prepared to answer any questions if and when they may arise. However, be aware of the media sources your child may come in contact with and take steps to filter them to the best of your ability. Avoid watching the news while your children are still awake, even if you think they aren’t paying attention. Don’t leave newspapers out or laptops open to newspaper websites. Ensure parental controls on computers, tablets, and/or smartphones your child may use keep news outlets from their access. I’ve even been known to flip over a copy of Newsweek or two when standing in the checkout lane, or hide them behind the Martha Stewart Living. You may not be able to shield them from the event entirely, but you can take steps to keep the coverage from being overly prevalent in their view.

Watch for nonverbal signs of anxiety
Even if your child has questions or concerns about events on the news, its not a given that they will verbalize them. Stay educated about various nonverbal signs of anxiety and keep an eye out for any new behaviors or changes to your child’s overall emotional state – even if you think your kids are still totally unaware. It’s impossible to know for sure what they may have overheard, seen in passing, or even been told by others, so never assume that the news isn’t playing a role in any behavior changes you might see.

Reach out to your resources and get support
Get in touch with your child’s teacher. Reach out to your ABA. Talk to your child’s counselor or psychologist – or consider contacting one if you don’t already see someone regularly. These issues can be extremely difficult to navigate, and it’s essential to have as many resources and tools on your side as possible. Build a support team around yourself and your child, and never hesitate to admit if you’re feeling out of your depth. It’s always ok to ask for help.

$20 Made Me “The Best Mom EVER”

A simple $20 investment each month has named me, and I’m quoting here, “the Best Mom EVER.”



You heard it here first folks: I am officially the best Mom EVER. I hope I get some sort of trophy or certificate or something. Now, the best mom ever title may already be claimed, but you could absolutely be named the SECOND best mom ever… and that’s still pretty good, right? How, you may ask, can this oh so coveted title be yours? Enter the amazing folks over at Kiwi Crate.

Kiwi CrateKiwi Crate is a subsccription box company with four different offerings: Koala Crate, which is designed for the preschool crowd, Doodle Crate, which is designed for girls over the age of 8, Tinker Crate, which is science and engineering projects ideally designed for kids 8 and up, and their main box Kiwi Crate, which is designed for kids in the 4-8 range. (Aidan’s Grandma has recently and generously subscribed him to the Tinker Crate, so we’ll review that service another time.) Inside the box is a magazine for the kids, and the supplies and instructions for not one but two projects that fit whatever the theme of that months box is. Within the magazine and some of the added materials are instructions for additional projects you could complete as well, often with supplies you likely have in your home already. They even included a page of pieces to cut out and use to make the box itself into a play stove! When all is said and done you could easily get a weeks worth of activities out of this one box if you did everything they included.

Our first box was a baking theme. Because it was our first box ever, our kit came with two extra items: a chart where Aidan can proudly display sticker badges he receives for each box he completes, and a bright green pair of children’s safety scissors, so that we always have a pair handy for future projects. Normally we would spread out all the fun things in his kiwi crate over the course of a week or two, but for the purpose of this review we headed out to the front porch to enjoy some unseasonally gorgeous Oregon weather and to demonstrate just how amazing this service really is. I could talk about our crate all day, but I’ll let the pictures do the talking instead.

(If you decide to sign up for Kiwi Crate to try it yourself, you click any of the photos in this blog and use the code KC25 on check out to get 25% your very first month! Best of all, you can cancel anytime, no obligation to go past the 1st month or to be “on contract” for any length of time, so it’s no risk to give it a try. The code works on Kiwi Crates other boxes, like Tinker Crate, as well!)

 

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Kiwi Crate Family Brands >>

When Your Worst Day Goes Viral

Click to Read the Post That Sparked It All

Click to Read the Post That Sparked It All

Friday, February 27th was one of my worst days. We were already walking one of the hardest seasons of our life, but we had been doing our best to keep our heads up and choose joy regardless. It was then that a trip to the grocery store turned into one of the most difficult experiences of my life so far, and threatened to shake not only myself by my 5 year old son to the core. Shaken and reeling, I took to the one place I could openly speak my mind in a way I simply couldn’t when the incident occurred – my blog, my little corner of internet real estate where I could openly share anything and feel like I had a tiny platform to be heard, maybe even understood. So a sat down for 30 minutes, watching my boys playing out the window behind my screen, and put my feelings into words. It was off the cuff and right from the heart, words going directly from my brain to the page, and I simply pressed “post” and returned to my day, feeling a little relief at letting my go of that burden of words unspoken. Little could I have predicted what would happen next.

#youremyheroaidanIn the next 48 hours the post went absolutely viral. In fact, 90% of the TOTAL page hits to my blog in its first month? All of them came from this one post. But it didn’t stop there. A reporter from our state newspaper spoke to me over the phone and penned an article about our experience. Other blogs and websites that run guest content offered to run the piece for us on their own pages. I started “Project Aidan” and the responses only grew. People posted comments, sent private emails, and posted to the #youremyheroaidan hashtag on various social media outlets. Kids mailed us drawings for Aidan’s. People sent letters. A microscope company contacted us to applaud Aidan’s unique love of science and sent us a gift pack to cheer him up. A middle school in another state spent class time making cards and a video to tell Aidan how special he was. Aidan even had a Skype date recently with a producer from the Ellen show about possibly appearing on the program, and now Aidan will be featured on The World Needs More Love Letters where he will receive even more outpourings of love, encouragement, and acceptance. I’ve made connections in the Autism and Hyperlexia communities I never could have dreamed of. I’ve received countless emails from parents saying they cried tears of their own because they’ve been in our shoes, and the post gave them the words they couldn’t find on their own. The response continues to grow and messages keep coming in.

Aidan is still working through a lot in response to the issue. In fact I just this past Monday afternoon had a meeting with his support team at our school, and its clear he’s still grappling with so many issues related to self esteem and how he perceives himself. For Aidan, its difficult to see the difference between different from other kids, and being somehow lesser than other kids. It’s something we work every day to try to address, and Lord knows this situation made it exponentially harder right now. But Aidan is an incredible kid, with so much strength and resilience underneath it all, and every time he reads a message telling him how incredible he is or gets a card in the mail to tape up in his reading fort? I can SEE the response. It’s very real and its incredibly apparent. Every message of acceptance helps outweigh the messages that convince him he’s not good enough, and every note of encouragement helps show him that not everyone shares the opinions he was burdened with that horrible day.

disagreeThe reality of a post going viral though, is not every response will be positive. There have been emails and comments that for a brief moment make me question it all – mothers of other children on the spectrum chastising me for what they view as exploitation by sharing our story publicly, people telling me I’m oversensitive and should have simply ignored it and moved on, people lamenting bloggers in general and how ridiculous they perceive the entire idea of sharing life online, even people who said the incident seemed too exaggerated to be true and suggested I made the whole thing up for our 15 minutes of internet fame. Any time you have a post that gets as much exposure as this one has, you’re bound to find voices that aren’t encouraging or supportive. It’s been an important set of lessons for me to learn as a new blogger: when and how to let those comments slide, to always ask where I get my value from and who I allow to define me, and how to keep the opinions of other keep me from changing my online voice and the message I use this platform to share. Ultimately I had to decide that if you’ve never experienced people disagreeing with something you’ve written, you might not being saying a whole lot. Criticism comes with the territory, and it’s just a speedbump, not a roadblock.

Im excited to see where this journey leads as this story continues to unfold, but for now I encouraged that God has me exactly where he meant me to be: writing, sharing our stories, and living our life as an open book to be used in ministry to others – nothing to hide, nothing to fear. I appreciate each and every message to the #youremyheroaidan hashtag, every card or drawing or gift we receive, but mostly I appreciate knowing we aren’t alone, and that there are still so many good people in this world ready to encourage the brokenhearted and speak love where its most desperately needed. Day by day its helping us erase the memory of what happened that day, and we’re confident God is using even our worst day for good. And ultimately, thats what it’s all really about.

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Project Aidan

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I have been overwhelmed by the support I have received both yesterday when posting the account to social media and in the short time since this blog post has gone live. The outpouring has been so beautifully encouraging and gives me hope that the angry voice of the minority is just that – the minority, and not at all how most people perceive my sweet boy.

That being said, Aidan is still working through the incident in his sweet little heart, and it’s hard for any parent to watch their child see so much less of themself than they really are. But in this case its honestly more than I can stand.

So I’m launching Project Aidan.

Because Aidan is able to read so fluently, and because he enjoys checking up on social media, I’ve decided to launch a campaign to show him just how loved and accepted he really is, and try to reverse some of the damage caused by the grocery store encounter. The premise is simple: post something to instagram, facebook, or even twitter with the hashtag #youremyheroaidan for Aidan to see. Tell him he’s special, tell him he’s awesome, tell him he’s loved – just tell him a little something to make him smile. I will continue to share with him your comments,posts, and shares and hopefully we can show this little guy just how wrong that man in the grocery store really was about him.

Lets send this kid an avalanche of love to outweigh the negativity and give him the boost of a lifetime. That man may be a veteran, but Aidan is the real hero in that story.

An Open Letter to the Man in Grocery Store

Yesterday was tough day.

It’s the day the every special needs parent dreads in the pit of their being and desperately hopes they never experience. In a world thats come so far in terms of tolerance and acceptance, I had almost begun to believe the comforting naivetés like “people know better now” and “no one thinks that way anymore.”

Yesterday it all came tumbling down and reality came crashing through again.

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While exiting the grocery store my boys and I crossed paths with you when you entered to do your shopping. You were wearing your camouflage jacket, proudly displaying patches identifying yourself as a veteran, the very sort of hero that Aidan has begun to emulate all around the backyard on his various “missions.” You made eye contact with Aidan, who was walking in front of my cart happily babbling on about new shoes he had picked out and how the springs in the heels just might even help him jump over a building if he practiced enough. Now Aidan typically responds to direct eye contact from strangers in one of two ways: he is either resistant and defensive, sometimes even verbally demanding that patrons stop looking at him, otherwise he responds quite to the other extreme and establishes an immediate relationship with the person in his head and desperately tries to connect and interact. In this particular occasion, he fell into column B. When asking Aidan about the incident, he told me he wanted to “play soldier with the solider.” This played out in the form of jumping in place into a playful stance of what can only be described as “put em up tiger,” and an accompanying “grrrrrrrr” for good measure.

Now I want to be perfectly clear about something: I don’t for two seconds believe that simply because my child is on the spectrum, that he is entitled to behave any way he pleases in public. For every measure of grace we give, there is an equal measure of teaching and guidance. And ultimately as a parent of ANY child, isn’t that all we can do? It’s entirely unreasonable to assume that any amount of good parenting could keep our children from ever acting out in public. No a good parent is simply one who uses each opportunity as a teaching experiences and is consistent in guiding their children to better choices.

1488186_10152498341399818_7654703513818516301_nYou looked at my son menacingly, then mumbled something at me under your breath while shaking your head in disapproval. “Im sorry,” I tried to say politely with a meager smile, “my son is on the spectrum.” I wasn’t planning to stop there, leaving my statement to waft around as some sort of free pass to continue on with our day. In fact I was angling myself to come down to my sons eye level and ask him to offer you not only an apology, but the greeting he has been well taught to offer any in uniform – “thank you for your service.” But before I could speak another word you stepped in gruffly. “Heh, that’s one thing you could call it.” Your words were seething with disapproval, broadcasting your judgment of my apparent lack of parenting skills and my inability to control my children.

I admit it, I was defensive at this point, seeing my sons face flashing with confusion and anxiety, desperately looking for cues from me on how to interpret a social situation that was simply too complex for his special brain to understand. My tone was less than polite at this point as I snapped back, “Excuse me? Do you even understand what it means to be on the autism spectrum?” I know, I could have shown more grace. I could have kept my patience. Maybe you were having a horrible day. Maybe you struggle with your own special challenges. I could have been kinder, but my words were sharp and pointed.

It was at this point you began to yell, each phrase bringing with it a wave of hot salty tears, each wave tossing me turbulently until I simply couldn’t tell which way was up and it was if my whole being shut down, lifelessly limp in the current.  “Of course I know what autism means!But then you should know better than to bring him into stores! It’s your own damn fault for subjecting the people to him! Next time keep the freak at home.

Did you see my son? Did you see when those final words left your mouth and that last syllable washed over his ears and into his tiny little heart? Did you notice him, rocking by the cart, hitting himself over and over repeating “Im not special. Im dumb. Im not special. Im dumb.” Did you even see? Because in that moment, my heart shattered into a million tiny pieces and I simply didn’t have the presence of mind to both minister to my wounded child and simultaneously find words to adequately respond. So I dropped to the floor to bear hug my son and attempt to soothe his restless stimming. You apparently interpreted this as some sort of check in the win column – proof I was the overindulgent parent endlessly catering to the child who wasn’t worthy of participation in mainstream society. You seemed to mentally pat yourself on the back with a little indignant hmph as you turned around and walked away, successfully putting us in our place and winning this battle against these clueless modern parents and their entitled spawn. And as quickly as you had crossed our path, you were gone, disappearing into the jars of pickles and rows of breakfast cereals, probably never to give us another thought.

In hardly more than a moment, you claimed to have examined all of my son and declared him unworthy – unfit for general consumption. You saw all you had needed to see, and you indignantly labeled him as too flawed to be worthy of redemption. You saw only a plague on the upstanding members of this fair society who know how to color properly within the lines, follow instructions, and wait patiently in lines with the others. You decided you knew my son, and you knew his apparent defects clearly outweighed his usefulness, and he belonged out of sight and out of mind where he wouldn’t be a burden on hardworking citizens like yourself.

But sir, you don’t know.

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You don’t know that Aidan has the most incredible mind for science. You don’t know that he spends hours exploring ideas like inertia and velocity and how colors are created in the spectrum of light. You don’t know that Aidan passionately poured over books and charts on chemistry for weeks, and ultimately committed most all of the table of elements to perfect memory. You don’t know that he draws charts of the order of the planets, identifies dinosaurs by enormous scientific names, and catalogs nature items in test tubes and jars for future study under his prized microscope.

You don’t know that Aidan has a grasp on logic and engineering that would make even the most adept builders and programmers sit up and take notice. You don’t know that he has already outgrown building legos with the instruction booklets and creates some of the most detailed and perfectly balanced structures and vehicles with whatever pieces he can find on hand. You don’t know that he has already mastered most of the basic concepts of computer programming logic and is hoping to start learning his first programming language this year. You don’t know that Aidan grasps complex math concepts like percentages and fractions and can explain them in ways that even some of his 5 year old peers could start to understand them.

10320379_10152178964994818_3365314110460915101_nYou don’t know that Aidan is one of the coolest 5 year olds on the planet. He has a passionate love for classic rock, placing the anthologies of the Rolling Stones, the Beatles, and the Who as some of his most prized playlist possessions. And don’t even get me started on his love for Queen. You don’t know he has an incredible sense of fashion, boasting quite the collection of vintage styled band tees and skinny jeans, and nobody rocks a beanie or a bowtie like this kid does. You don’t know that he used to idolize our old worship pastor, spending countless afternoons strumming on his guitar trying to be just like Mr. Robb someday. You don’t know that he mastered the art of comedic timing and a quick wit, keeping even the most celebrated minds on their toes with the quips this kid comes up with sometimes.

You don’t know that Aidan has the most compassionate heart of any 5 year old I’ve ever known. You don’t know that he sponsors a child in Uganda, ran his own snack stand at our garage sale last summer giving every cent he made to funding education for kids in Kenya, and that he worries deeply about the homeless and the poor. You don’t know that although Aidan often struggles to correctly interpret what others are feeling without more obvious clues, that the moment he senses someone is feeling hurt or lonely or upset? Aidan’s the first kid to run over and ask if they are ok or if there is something he can do. You don’t know that he’s still just a great big teddy bear, not afraid to spend a whole TV show cuddling his baby brother on the couch or offer his mama unsolicited kisses and I love you’s, even in front of his peers.

10517974_10152350869364818_6568712365504512355_nYou don’t know that Aidan’s love for others is limitless and his propensity for offering forgiveness knows no bounds. You don’t know that when I had the worst day in my parenting life and screamed horribly at my son casting in him his room telling him I couldn’t stand to be around him, that when I went to apologize to him later he looked up from his book before I could say a word and said calmly and sweetly “I forgive you mommy, and Im so sorry I called you a jerk when you were being mad.” You don’t know that even though my sweet boy is still deeply wounded by the horrible words you said, that at bedtime prayers last night he chose to pray for YOU, sir. You don’t know he offered up a sweet sincere prayer that God would give the army man a good day tomorrow, and that he could have Jesus in his heart. You don’t know that my 5 year old son with all his challenges and struggles was hero enough to forgive YOU, a man that should have been his hero but instead broke his tiny heart to pieces.

You don’t know my son. You don’t know what the world would be missing if I didn’t choose to keep subjecting people to him as you put it. I have spent all year teaching my son the truth he is valiantly trying to cling to today: that He is made in God’s perfect image. We have taught our son that our big perfect God is simply so giant, so complex, and so beautifully multifaceted, that it takes a picture of each and every man woman and child on this earth to begin to see a reflection of His perfect being. That being made in His image means that without Aidan, we would miss some facet of Gods character, some immutable truth about His being, that somehow Aidan in his beautiful uniqueness has been chosen to perfectly showcase to us all. Aidan has a responsibility to keep being the amazing little guy God created Him to be, and it’s heart wrenching to me that someone like you would miss out on such beautiful truths and the absolute joy he brings every soul that really takes the time to get to know him.

You’ve probably forgotten about us sir, and there’s a good chance you will never see this letter. But we wont soon be able to forget you or your jaded words. I can only pray that God’s grace abounds and that Aidan be reminded how incredibly special and incredible he really is. And judging by his bold choice to pray for you last night, I am encouraged that God is holding my sweet boy safely in the shelter of his arms, and that somehow He will bring him through this stronger and better for it. We will keep reminding him of who he is, and try daily to undo the damage of your careless words. I pray that God will bring people to surround my sweet son and see him for the beautiful hero he is, facing the world each day with such determination in the face of his challenges and such a joy for each day he’s been given. And most of all I pray that your heart be softened, and that you never again have cause to tear down a child the way you did in that store. I’m hoping I can follow my sons incredible example and find forgiveness for you in my heart enough to wish you well, but I admit he is so much stronger and more compassionate than I am right now. If only we could all be a little bit more like Aidan. I hope someday my son is able to see himself for the truly incredible person he really is.

UPDATE: Want to help outweigh some of the nastiness Aidan is dealing with by participating in a good old fashioned viral campaign for good? Check out this post to see how you can participate in Project Aidan and help this little guy get a taste of just how special he really is.

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