superhero

su·per·he·ro /ˈsu:pɚˌhiroʊ/ noun

plural su·per·he·roes

1 : a fictional character who has amazing powers (such as the ability to fly)

2 : a very heroic person 

There are many definitions of what makes a superhero, super.  It's not something I thought about until our superhero cape came today in the mail.

What DOES define a superhero?  I'm sure when you hear the term, something very distinct comes to mind.  A particular outfit?  The cape?  An attribute?  A strong moral code?

Here is a great discussion about this topic by Katie Schwarz:

"No definition will ever work perfectly, because "superhero" isn't a concrete distinct category but an archetype.  One can use a definition to determine if a character is nearer of further from the archetype, but never to find a definitive line, with supers on one side and everyone else on the other.  That line doesn't exist."

Now I think I understand.

What's a superhero?  I think it's whatever you define it to be, under whatever circumstances you feel require super powers of some kind.  And with that, I think Nea fits the bill.

When I think about what this little girl has been through over the past year or so, I am amazed.  She has shown  strength, courage, and an innate ability to smile through it all.  Yes, she has an entire team (therapists, teachers, family, friends) of folks that help her endeavors.  They encourage, they cheer, they support, they teach, they dry a tear and they believe in her unconditionally.  Superheros always need sidekicks, and Nea's SideKicks list is very long!

I've seen her get frustrated.  I've seen her freeze in fear meeting a new situation.  I've watched her get funny looks from other kids and simply go find another kid to approach.  I've heard her say, "I'm okay" even as I've held her tight with her little body shaking from sensory overload.  Her brain, her spirit, her senses and her being get shook every single day.

Can eat an ice-cream cone in a flash!

Could you do it?  I don't think I could.  I really don't.

Today Nea received a superhero cape in the mail.  We were on our way to the park when Poppa checked the mail and brought it to me as we were loading up the car.  I opened it, and started crying.  Such a sweet, wonderful gift for my girl who loves all things Batman, Spiderman and Ironman.

The handwritten note said,

"Super Antonea!  Roxanne thinks you are a Tiny SuperHero!  We agree!  Welcome to the Squad!"

Able to run at lightening speed!

Oh, my goodness!  How amazingly fun and very empowering.

Since she was buckled in her carseat I decided to wait until we were home to show her the cape.  (Just a sidenote....that was just dumb.  Seriously, I could have had some very fun photos in the park with cape!).  When we got home, I let her open the package and see it.

"Mama!  I'm a hero!"

She knew exactly what to do with it.  She wanted it on, she ran to look in the mirror and she exclaimed, "Just like Batman!  I'm a hero!"

Did I get it on video?  No, because I'm an idiot.

SuperNea's new cape!

Suffice it to say....Nea is one of the happiest superheros in town tonight.  THANK YOU to Roxanne for making this girl smile with pride and feel empowered!

We can't wait to see what adventures await Super Nea!

SuperNea hard at work

If there is a tiny superhero that YOU would like to nominate and sponsor, check out their website here!

Pulled the drain on swim class

I took Nea out of swim class.  Yup, I took her out.  It was not meeting her needs and she needs something different.

Now before anyone panics, I am fully aware that she NEEDS to learn to swim for her own safety.  Nea's attraction to water is very strong, and her impulse control is very weak.  She will jump in any body of water, anytime, anywhere.

As I've said before, Nea's been in a swim class since she was 6 months old.  She was never the baby that cried when in the water.  She was the baby that splashed and kicked gleefully.  I learned very quickly that I had to be careful with her around the pool because her impulse control was so poor.

Nea was usually out of swim during the summer months because we were doing swim on our own.  When fall came after she had been diagnosed, I wondered about a special needs swim class.  I spoke to two aquatic directors about a regular class or a special needs one and we decided that the special needs one would suit her best.  

That was a year ago, and it's been bumpy.  

Swim instructors at the place I take her change frequently.  So there hasn't been a great opportunity for her to bond with any single person.  That really is too bad, because the more she is "hooked in" with you, the more she will do for you.  The other issue that kept coming up was that these instructors.....as sweet and as nice as they are, would not listen to me when it came to helping to teach her.  I knew they did not have specific training in Autism and I tried to help them understand what HER motivators were.  I explained time and time again that putting her in the baby pool does not work for her because she simply just walks around.   Really, I grew sick of having that conversation.

So the combination of inconsistency, lack of knowledge about her Autism and not listening to my suggestions had me looking for something else.   In reality, her current state of swimming skills has come from me and our time in the pool together.  I've taught her how to hold her breath and the beginning of how to move underwater.  When I let the teachers know what she's done (especially when trying to quickly fill in a new one) the information is met with nodding and a courteous smile.  There's never a "okay, great! Nea, lets see what you do underwater!"  They each like the process they know and want Nea to follow that same process.  In the beginning, I was open to that, believing that learning the process presented was what she needed to do to learn to swim.  But what I found is that her frustration levels only increased.  There has not been a "lets go with where she's at today."  Every day is different with Autism.   And what worked last week, probably doesn't work today.  But that notion always fell on deaf ears.

Advocating for your child sounds so cavalier, until it starts to get in that messy world of hurting feelings or making someone angry.   The place we are at now has great programming, but it just doesn't work for Nea any longer.   What I really want is a robust program like this that is focused on kids with Autism.  Right now, everything is a retro-fit and it's just not working.  

I have contacted the Certified Therapeutic Recreation Director at the new place to talk about private swim lessons and options available for Nea.  The other thing I'm so impressed with is that they will make accommodations in ANY of their programs for special needs kids with a couple weeks notice.  Putting Nea in a tumbling class or a dance class has always been of high interest to me.  Also, this new place is connected with Special Olympics and I find that very promising.

I don't know all the answers or details yet.  In the meantime, Nea will spend weekly swim time with Mama and we will work on swim kicks, arm circles as well as movement under water.

Stimming

You've done it.  Yes, you.  If you've ever twirled your hair, shook your leg, bit your nails, drummed your fingers, tapped your hands....you are stimming.  Self-stimmulating behaviors.  They can provide sensory input or quiet an over-active nervous system.

Let's remind ourselves about Autism.  It's defined as  "a disorder of brain development, probably beginning before birth."  Notice it says "probably"....because in fact, we just don't really know.   It was once believed that it was caused from bad parenting.  We stressed out and devastated many Moms about "frigid mother" back in the 50's assigning the fault to them. Now the thought is that it's a very complex and multi-organ....affecting the GI system, the immune system, the metabolic system and the central nervous system.  It's very common for kids with Autism to have sleep disorders (Nea certainly does) and hormonal imbalances are being reported (Nea also has this).

The stimming behaviors are part of that central nervous system issue.  The difference between "typical behavior" and kids who have Autism is that the typical kids can turn it off or stop the behavior.  Children with Autism cannot. It should also be noted that some stims are seen as "disruptive" and therefore, therapy is used to help with the behavior.   There is much discussion in the Autism community and with behavioral therapists if these kiddos should be allowed to stim or if it should be stopped.

So, can you identify your own stim now?  I will confess, I have 2 very strong stims.  First, I twirl my hair....usually when I'm bored, or when I'm trying to concentrate.  I also rock back and forth.  I'm doing it right now as I type.  Self-stimmulating behavior for typical kids (and adults) is a matter of choice and a matter of intensity.  I can stop rocking and twirling very easily.

And, as predicted, Nea stims too.  We had to make a decision on this journey if we were going to allow her to stim or if we were going to try to stop the behavior.  At home, we allow her to stim and do not put limits on it at all.  In fact, we view it as a communication tool.  And we know at school the rules of society are very different.  They teach "quiet hands" if it starts to get to be too much.  I noticed that during speech therapy (when Nea has to concentrate very hard) that she starts moving her arms up and down as if she's drumming.  The therapist ignored it for a period of time and let her center herself with that activity....and then redirected her gently.  It worked well.

 So how do we know when Nea is stimming?  And what's it mean?

She has an oral fixation for sure (the paci, licking all new objects, flicking her nose to create a vibration around her mouth).   In and of themselves, they are not a big deal.  Babies and infants mouth objects all the time, it's how they get information.  6 month olds have a joyous time when they find their hands and toes and stare at them constantly.   However, for Nea at the age of 3, these activities are not developmentally appropriate and may even be in the way of progressing other development.  She also likes 3 pacifiers at a time.  One for her mouth, one to flick her nose repeatedly and one in her hand....squeezing.

A 3 paci moment (click on pic to enlarge)

Her other ones are spinning or falling down hard.  I can tell you when I see them the most....when she's been over stimulated (after school, time spent in a big crowd, or in an area with lots of noise) or when she's trying to deal with a big emotion (excitement, anticipation, fear, anger, frustration).  Her vocabulary is limited, so her ability to let us know the issue is limited.  She's 3....3 year olds can be quite verbal in expressing their ideas and emotions.  But because communication and speech are so difficult for her, it seems to manifest itself in different ways.  It's our job to meet the need with either a weighted blanket, dark room and quiet activities or hit the other end of the pendulum and get her on her jumper.

 I will tell you that some of it is science, some of it education from great therapists,but most of it's gut instinct.

Some therapists and scientists believe that stimming often produces a chemical reaction in the brain and that for people with Autism, that reaction is 10-fold.  If you've ever experienced a "runner's high", you understand what this means.  Seriously, if you had that feeling when you flicked your nose repeatedly wouldn't you do it often?  And if you were in a very stressful situation, wouldn't you do it as much as possible?

For some reason, I get this stimming thing with her and it never bothers me.  Maybe it's because her stims are more subtle.  But  I know for some parents it makes them very uncomfortable.  Although, I have to say,  the looks we get when she has a paci out are downright damning.   As she gets older, my plan is to help her identify when she's stimming so that she can understand when it's coming and come up with strategies to deal with it.

In the meantime....we spin, we rock, we jump, we flick and also we squeeze, we hide, we cover.

Welcome to Autism.

The Art of Communication

Oh my goodness!  I promised a blog post about speech therapy at school, and it's taken me a few days to get it posted.  Life happens, what can I say!

The early learning center has a very open door policy when it comes to parents being a part of the classroom.  I'm grateful.  Understanding what Nea's experiences are at school, helps me immensely at home.   When I contacted the therapist, she was more than happy to have me come and watch Nea's session.

Nea receives services of 60 minutes a week.  30 minutes of that are met in small group activities with other students.  Remember, the social aspect of speech is Nea's focus now and group work is really important.  The other 30 minutes are divided into two 15 minute sessions done on Tuesdays and Thursdays.  This is a 1:2 ratio with the speech therapist, Nea and another student.  Again, the focus of sharing, turn taking and vocalizing requests are best accomplished with a peer.

Thursdays session was held on the floor in a corner of the library.  The teacher gathered Nea and her student peer and ushered them to the area.  The area is "walled off" with chairs and furniture but kids are naturally curious and many kept moving in and out of the area.  There is another class (besides Nea's class) that is in the library at the same time.  Yes it's loud.  The music area is right next to the "quiet corner" so drum playing, cymbal crashing and singing were happening the entire time.  Lots of laughter and fun from the other children in the room and certainly the energy was HIGH!

The whole thing was distracting to me, I can't imagine how it was for her!  She was hyped up, there's no doubt.  She wouldn't sit on the rug on  the floor, she grabbed at objects, she was fixated on the dinosaur that was in a toy-pack behind the therapist and she would not respond to any conversation.

It was dreadful.  It was really, horribly awful.

Both the teacher and the therapist discussed with me before and after that the area was not really conducive to therapy sessions.  However, that's the only area they had and they had to make it work.  It's far to early for me to go into some issue "both guns a blazing" but I had to figure out how to help or Nea's Thursday speech sessions were going to be worthless.

In fairness to Thursday being so awful, I requested to go to a Tuesday session.  The speech therapist was happy to have me and I went back to the school 5 days later.  This time she went to the classroom, retrieved Nea as well as the other student and brought them to the speech classroom.

Holy smokes, a TOTALLY different environment. 

Bulletin board in speech room

First, the cabinets are closed, so there are not super fun toys to taunt Nea.  Distractions were minimal if at all.  The speech classroom is divided in half, but there is a wall divider that works very well.  Nea was happy to sit in the chair.  Chairs work best for her activite little body because sitting on an open floor does not provide good sensory feedback for her butt.  She needs boundaries, and firm ones at that.

The session went very smoothly.  Nea and her peer played a word matching game, they shared, they took turns, they had to talk about the game.  The speech therapist provided input if the girls were just echoing or not saying words correctly.  She wouldn't let either of them get by with nodding answers....they had to say the word.  I have to say it was really cool to watch Nea interact so closely with a kiddo her age.

As it turns out, I didn't need to help anyone.  The speech therapist and the teacher made other arrangements so that Thursdays sessions didn't take place in the busy, noisy library.  Perfect!

So what does this all mean?  Has there been a successful transition from private speech therapy to school speech therapy?

Private speech therapy was our beginning.  In fact, if you remember, it was the speech therapist that strongly encouraged us to get her to a developmental pediatrician due to the autism signs she was observing.  For the past year she worked on helping Nea understand that communication has a purpose.  She helped her understand how to make requests, she taught me how to create communication tools, she helped us to understand Nea's needs and motivations with speech, she insisted on eye contact routinely, and on and on.  Essentially she laid the foundation (and a damn strong one) for Nea to build upon.  When she told me, "I can't help her anymore" I wanted to fall out of my chair.  Nea's foundation was ready, she was more than ready actually....she needed to move on to the practical reasons that we all use communication.  Conversation, social interactions, expression of emotion, understanding someone else, getting your needs met...etc.

Nea has been in school 4 weeks, and here are some major things that I've noticed....

Instead of lining up toys and animals (which she still gets great joy from), they now introduce each other.  "Hi Thomas, what's your name?  I'm Mia"  (she still has trouble with the N sound).

Pretend play has increased dramatically with animals talking to each other "Tiger, it's okay, don't be scared, Mama is here."  "Elephant do you want to play?"  "Giraffe, do you want to ride the train?"  She's making a conscious move from inward play (watching the wheels go back and forth) to pretend play with appropriate use of the toy.  It's been nothing but amazing to watch.

And then there is books.

We have lots of books around our house and Nea never has had an interest in them.  She may look at them once when she saw it, but after that it landed in a pile and she never cared.  Try as I might to pull one out for her and I to read together....she simply wanted no part of it.  There was nothing pleasurable about it for her.  I know that reading to your child helps to increase her language and vocabulary, but it just wasn't working for us.  And of course, as all Mom's do, I felt horribly guilty.  Maybe I wasn't trying hard enough.  Maybe I wasn't presenting it well.  Maybe I didn't know how.

But school has changed that.  Somehow, someway they have introduced books to her in a way that excites her.  She's in the library every Tuesday, she brings a new book home, she brings a book to me routinely now to sit with her and read.  I may not get to read every word on the page before she turns the page, but we certainly get the gist of the story with my ad-libbing along the way (thank you Drama club).

I rearranged Nea's room to look more like how her classroom is  organized.  There's the quiet corner where her tent is set up, there's the jumper for her to burn off some energy, and now....there's a bookshelf for her books.  No longer do they sit in a pile in a carton.  Now they are displayed so she can see every one and choose as she wants.

Nea's Jumper

Yesterday I heard this from Nea's room.....

"Meow" (from Nikki, our cat)
"Oh!  Hi kitty!  Come in!  Sit down.  Sit down, kitty. SIT DOWN KITTY!    Want to read storybook?  I read storybook to you."

And when I peeked in, there was Nea on the floor, book open, talking and "reading"

....and the sweetest cat I've ever known, listening intently.

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