The Three Mistakes

Dear Generic Baking Soda Box Maker,

I get it, trust me I do.  You probably looked over many marketing plans, perhaps even had a focus group about what baking soda packaging should look like.  And in my naivety about baking soda, I pretty much assumed that something like baking soda was in fact a product I could get away with buying a generic brand.   Now I don't do that for everything, but I do believe powder is powder.  However, it should be noted that I do not feel the same way about ketchup.  I'm just saying.

Granted, my cooking skill set is rather limited, so I do defer to your expertise here.  You've probably used baking soda far more often than I.  And so when I came across this item on my grocery list (which is on my phone because I'm hip like that) I saw the two boxes side by side in the aisle.

And I chose you, generic baking soda.  I chose you indeed, not knowing what was coming in just a few hours.


As I stated, I do not have mad skills in the kitchen.  We get by, but I'm not cooking something awesome every day.  In fact, this week is the first time I actually made a menu for the week.  But I do vaguely recall a cookie recipe or two that calls for baking soda.  It stands to reason that you would place a picture of cookies (are those snickerdoodles??)   on the box.  So see?  I get your marketing scheme there.

However, my 3 year old OCD, Autsitic kid...not so much.

She came across the box in the kitchen, snatched it off the counter, bringing it to me to open.  I simply told her she couldn't have it and why the heck would she even want baking soda anyway.  That started a "game" of my putting the box on one side, and her running to it...then me moving the box to my other hand quickly (I should be a quarterback in the NFL with my accuracy).  Back and forth, back and forth playing this game of Keep-away.  (Mistake #1, it wasn't a game to her).  She was mad, she was frustrated and she was downright pissed that a) I didn't get it and  b) I wasn't listening to her non-verbal cues and c) I wouldn't give her the damn box.  All the while, I was baffled as to why this box was so intriguing.    She finally gave up, marched off and became distracted in something else.

I sat the box on the end table and forgot about it.  When she came back 20 minutes later, she spotted it right away and picked it up. "ahh! ha!  me! me!"  What the heck??..... And then it hit me like a brick wall.

There are no cookies in there.

How am I going to explain your marketing plan to this child?  I decided no conversation was really going to work.  So I took the box away from her.  Mistake #2.  I should know my child now.  And even if she cannot express herself well, I certainly know words in my vocabulary to help explain this.  I"ll save you the details but suffice it to say it was a long discussion (too long, Mistake #3) on her wanting cookies from your pretty box and me telling her no.   It finally escalated to the point that she yelled (while slamming her hand  to the table)

"Put it DOWN, RIGHT now!!!"

These are not the cherished words from my little cherub I was hoping to hear after a years worth of speech therapy (again, silent applause for a full sentence with passion and meaning and used appropriately).

Our discussion (if we can really call it such a thing) ended with her crying and moving into meltdown mode.   Lucky for you (or I would have called my Congressman) we avoided full blown meltdown.  It was a matter of me showing her that all was inside was fluffy powder, not cookies.

Do you know how confusing that is to a kid?

So, I'm asking you to reconsider your packaging on this one.  Don't make me send my 3 year old over to your office with several boxes of baking soda.   It won't be pretty, I promise you that.

Sincerely,
Me

Can it happen to me?

Kelli and Issy

The Autism community is flattened again by the attempted murder/suicide of a teenager with Autism and her mother.  We have heard this story in the past, and most recently in the Spring with Alex.  It affected me very strongly as I learned of this family's struggles and how they tried to cope.  Eventually Alex's mother stabbed her son and attempted suicide....seeing no other way around the situation.  My initial reaction was pain for them, and then it turned to anger and a plea for help for parents.

But this one feels very different to me.  This one feels really close to home.  In Alex's case, his mother used a knife, wiped it clean and then waited for him to die.  I know in my heart of hearts that I am not capable of that level of violence.  Kelli drove her and Issy to a secluded place in the country, shut the windows of the mini-van and had 2 charcoal grills lit inside.  When the police found them they were both unconscious from probable carbon monoxide poisoning.  Kellie will make a full recovery, but Issy may suffer from long term brain damage.

But Kelli was a fighter.  She was an advocate.  She moved heaven and earth to get services for her kiddo and make sure that the right things were done at the right time.  Her husband was the principal at the school her daughter attended.  Kelli wrote honestly in her blog about how much battle they had to do to get Issy in a treatment facility to help with her aggression.  Kelli ended up in the ER a couple times because of physical assaults from Issy.   But she always seemed determined to keep love at the center of everything.  Pictures and videos posted showed Issy and Kelli working together as a strong Mom, daughter team working through the unfair disadvantages they had been dealt. She posted a video of going to the treatment center to learn how to do behavior modification with Issy.  In the 2 minute video, Issy attacked her, as well as the 2 workers.  There was blood, it looked like a bar fight.  But Kelli talked about growth, progress and moving forward for Issy's sake.   A supportive husband, many friends and a network of a community who knew exactly what she experienced most days.

Kelli's last blog post was about feeling betrayed by the school district and a power play by one particular teacher.  She felt responsible that she felt she played it wrong and now her daughter would suffer.  The school district did not want Issy back and offered an alternative that was a 2 1/2 hour bus ride one way.  Kelli's last words on the blog were....

There is so much more to say.  I’m just too tired to write more.
All my love,
Kelli

I don't know if I've had a bad a day as Kelli.    But I do remember the anxiety and fear at the IEP meeting and making sure services were available to Nea.  Overall it was a good experience and there wasn't really much "fighting".  But I worry that down the road, I may need to yell a little louder, push a little harder and stomp my foot a little bigger.  And will those battles take a toll on me in ways I yet understand?   Those in the community understand the relentless day to day battles that we must fight for our kids.  Whether it's avoiding a snarky glance from a bystander at my loud kiddo, or rearranging activities constantly to get Nea to therapies, or doing things over and over again hoping to finally get through.....it's exhausting.

My new response when someone says "Boy, she doesn't quit.  You sure have your hands full." is to smile and say..."You should see how full my heart is."   And more often than not, I operate from that place.   But I am human, and I have weaknesses just like everyone else.

I don't know how Nea's story will continue to unfold.  Maybe she'll have aggressive behaviors, or develop a seizure disorder (that one looms all the time), or ....(I could go on and on).  But these thoughts along with our daily lives can really become overwhelming.

If I've learned anything from Kelli and Issy it's simply....

It can happen to any of us.

The Freak at Church

I was talking to a Mom a few weeks ago who also has a child with Autism.  We were talking about parks in the area and sharing good tidbits of info.

" XYZ park is good because it's totally enclosed."
"MNO park is great because there are not lots of big kids."
"Careful of QRS park because of the pond right next to it."

When your child is leery of social interaction, is drawn to water or is a bolter/runner you have to make very systematic decisions.  I know personally that if the park is anywhere near water, and not enclosed in some way- we just don't go.  It's a series of questions you have to go through to determine the safety of your child, the sanity of yourself and what the price will be.

Why is this story important?  Now I am heading into uncharted waters and I'm trying to figure out exactly how to navigate them.  I have not seen this subject come up much in the Autism community, so I'm not sure if no one thinks its an issue or if no one tries to navigate the waters.

I took a bit of a hiatus from my church when Nea was born mostly because my time was tied up with a newborn.  I also started my MBA program when Nea was 6 months old and time became even more limited.  Don't get me wrong, I kept ties with the church, popped in when I could but had to take a very far backseat to get through these phases.  I am ready to re-enter more steadily and now I'm doing it with a 3 year old.

We attend the local Unitarian Universalist church.  I have been with the church for over 10 years and served as the co-leader for the Senior Youth Group program.  Some of my best memories at the church involve spending time with the youth.  If you're "weird", you are celebrated at the UU church for sure.  I attended youth conferences of 200 UU teens.  Most were blue-haired, crazy-clothed, and marched to the beat of a very different drummer.  Every second I spent with UU youth enriched me in ways I cannot begin to explain.

I am fully aware that many churches have great philosophies and beliefs.  And if you have found a church that meets your spiritual needs, I'm very happy for you.  There's nothing more wonderful than finding a church family!  I'm not going to jump into any debate about one religion being better than the other, because I don't believe that to be true.  There are 7 reasons why we have selected the UU church to be our home.

7 UU principles 

Just as I have to be calculated in my approach to which park we attend, I have to think about exactly how church is going to work for us.  The philosophies and the beliefs are certainly something that I am very comfortable with and teaching to my daughter in hopes that she becomes a responsible, thoughtful, compassionate member of society.  But how do we navigate the church environment?  Lots of people....it can be noisy, new faces, high energy activity, etc. etc.  (I would also like to note the church is located right in front of a pond!!)

The healing power of stickers

Sundae Sunday!

We have been attending the last 3 weeks, and we have had good success.   In the past I would take Nea to the nursery while I attended the service.  After the children's focus in the service, the kiddos are all "excused" to go to their classrooms while the adults listen to the minister or speaker.  I always keep Nea with me the first 20 minutes of service and then take her to the nursery.  Amanda has known her since she was an infant, and Nea is very comfortable around her.  Amanda is the sweetest person, with the kindest spirit and Nea has always responded very positively to her.

Last week, I sent her to the Pre-K class.  She seems like a bit of a "giant" in the nursery any more!  The first time at Pre-K in church went very well.  No tears, she was inquisitive and she had all sorts of smiles when I came in to get her.  Success!!

Now here's the million dollar question......should I share Nea's Autism story?  I ask that from a fundamental place....not a place of embarrassment or shame.  I kept her from going out an open door that someone was kind to keep open for her (ack!), I chased her off the top of stacked chairs (eek!) and I rocked her silently in the chair when she started shaking from too much stimulation.   How do I make sure folks understand she participates differently in the world than other kids without making it seem like she is super-needy-high-maintenance?  Or does it matter?  Does that conversation even need to be started?  Is it a learn as you go?

 Every person that comes up to Nea and says "HELLO!" does it in an excited way.  I always encourage her to respond and say hi but sometimes it makes her hide her head, hang her head or avert her eyes.  I think I noticed it more today than any day because of the one person that did it very differently.  He came up to Nea and I (as she was scarfing down ice cream...it was Sundae Sunday afterall!) and pulled up a chair.  He started talking to me, and ignored her.  (This is the opposite of what most adults do there, which is always acknowledge the child in a positive way...which is why I noticed.)  Him and I chatted for a couple minutes, laughing and joking and talking about Italian Ice vs. Ice Cream.  Nea became intrigued and looked his direction which he took as an invite.  That's when he engaged her and spoke to her....and she responded!  I was shocked.

And then I wasn't.

Why?  Because our congregation is full of "the weirdos" and "the freaks" and "the strange ones"...and he gets her, even if he doesn't know her well.  At the UU church,  we want you to explore everything different about yourself and shout it from a mountain if you need to.  It's built to be a safe place so that you CAN be who you are, not fit a mold and learn about the world, yourself and "the freak" beside you along the way.  I want Nea to have that safe spot all her life.  Not just at home, not just with friends but also in her church community.  It's a big deal to feel accepted.  That's true for kids and adults alike.  Everyone deserves to have that in their life.

Dancing at the UU church

More dancing!

Nea will be different than other kids.  She may even be tagged as "strange" or "weird".....and my hope is that the UU church is the soft place for her to land if she needs.

Principle #1