Valuable - a special needs ministry

In the Spring, I spent a lot of time praying and seeking God's direction for my life.  I also made a commitment to obey God.  During this time, I felt very strongly that God wanted me ministering to moms who's kids have special needs.  I obeyed God's urging to make an appointment with one of our church's co-pastors.  I told him straight out "I have no idea why I'm here but I'm trying to obey God.  Here's my story." He shared that the pastors had been praying about starting a class for kids with special needs.  I'll be honest, at first I thought "but I wanted to minister to MOMS!" God lightly tapped me on the shoulder "What better way to minister to moms but to love their kids!"  Shortly thereafter, I met with another of our co-pastors and we started making plans for the new ministry.

Church can be a struggling point for many families who's kids have special needs.  It was for us.  We left the church I grew up in, the church we were married in, because they couldn't serve B effectively.  When we moved to c|Life, I reached out before we arrived to let the Children's Minister know we were coming.  She met me at the door and escorted us to B's class.  She had already prepped his teachers.  It was such a positive experience for us! I want more families to experience the relief of knowing their kids are understood, well cared for and learning about the love of God.

Valuable launched on August 23, 2015 at c|Life's West Campus during the 9:30 service.  We have a team of caring volunteers with huge hearts waiting to love on kids.  We teach the same lessons as the other kids' classes.  We do it in a flexible and sensory friendly way.  A small group, lower volume, big love.

We have a tent for alone time.  A trampoline for jumpers.  Fidgets and sensory toys for busy hands.  We follow the kids' lead.  One week, B wanted to keep playing a game from the lesson.  We had the flexibility to do that!  Everyone can do what they need to do while learning about God's love.

We serve kids in kindergarten through 4th grade.  We want to serve kids who have Autism, Down Syndrome, Sensory Processing Disorder, or anything else that makes traditional church a challenge.  We would like families to complete some paperwork to help us get to know their kiddo.  You can download the paperwork here.

We believe that all kids can learn.  All kids are created by God, in His own image, for a specific purpose.  All kids are valuable.

Kindergarten Graduation

Today was a momma-heart-walking-around-outside-my-body day. Today was B's kindergarten graduation.  Which I had thought was not going to be a big deal.  We did this last year too.  I wasn't sure I was going to get over to the elementary school for the ceremony.  Today was an exam day at the middle school. Plus, we had a million other things going on.  I had tried to prep B last night for the possibility that I wouldn't be there.  I told him no matter what, Ms. Lori would be there.  Ms. Lori is our neighbor and one of my best friends.  But thanks to my super awesome sister-in-law/school counselor covering my class I was able to make it!

As I walked into the elementary school I encountered Mrs. Valenta, who lets Brennan play with her tassel necklaces. Today he told her she had on a double tassel necklace.  Next I ran into Mrs. Bryant.  She had just let Brennan button and unbutton her jacket for the last ten minutes.  I found Brennan and told me he was nervous.  Mr. Smith confirmed this by telling me Brennan had to be convinced to come to the awards.

Brennan did a great job during the ceremony.  He sat on the floor with his class.  He stood in line and waited his turn to get his envelope of awards.  He hugged his teacher and returned to his seat.  About halfway through the next class Brennan got up and came towards me at the back of the gym.

B and his #1 pal Mr. Smith

"Momma, do you mind if I have a little chat with Mr. Smith? It's about our buddyship."

I should stop here to say that it's been a rough year.  I don't want to get into all of but, suffice it to say that B could not handle his regular classroom.  Mr. Smith is the behavioral specialist at the elementary school.  Brennan has been self-contained with Mr. Smith for most of the spring.  In May, Brennan told the neurologist that Mr. Smith was his #1 pal.
Brennan, Mr. Smith and I walked to the back of the gym.  Brennan's eyes were big with big tears.

"Mr. Smith, our buddyship has come to an end.  We can't be buddies anymore.  I have to go to 1st grade.  We wouldn't be in the same class anymore. I can't do it.  I'm really nervous to go to 1st grade. I can't write 100 sentences in 1st grade.  I wouldn't be with you anymore." (some of this is paraphrased.  I was alternately trying not to cry and trying not to laugh).

Mr. Smith did a great job of reassuring B that 1st grade would be great.  And that even though he was going to be in a regular class, they would see each other everyday.  I teared up.  Mrs. Bryant and Mrs. Tutle (the principal and B's #2 pal) were nearby and they teared up as well.

I thought my heart would burst.  I was so proud of how Brennan handled his emotions.  He didn't meltdown.  He expressed himself beautifully.  It really summed up the year of growth he's had and what a huge role Mr. Smith played in that growth.

Please don't buy the lie that autistic kids aren't emotional.  Sometimes it's a matter of being able to express those emotions.  Today Brennan was able to express himself.  We'll see about tomorrow.

Acceptance vs. Awareness

Last week I wrote about what our family would like you be aware of regarding autism.  I also wrote about the need for autism acceptance. This week let's talk about what acceptance looks like vs. awareness.  Please remember these are true for our family.  Autism is a spectrum disorder. Each person with autism is effectively differently.

What would you add? How can you work to accept autistic people?

April is Autism...

The most common ending to that sentence is awareness month.  I'd like to see us (ya know, society) move past awareness to acceptance.  I do understand that awareness leads to acceptance so here are some things our family would like to make you aware of about autism.

Me
I'd like you to be aware that every kid, autistic or not, is different.  Every kid has challenges.  We need to do what we can to help kids handle their challenges effectively.  My autistic kiddo needs a little more time, direction, patience and love to handle his challenges that my neurotypical kiddos.

Please also be aware that while my autistic kiddo speaks, ALOT, he still has trouble communicating.  Most of the time he's repeating things he's heard or talking about a favorite subject.

Ryan
Don't take things personally.  Some things he says or does are almost involuntary.  Sometimes B says things in mid-meltdown that are rude or hurtful but I know he's not himself.  But mostly remember that they are very special people.

Sam
Autism is a challenge but you have to accept it.  NOTE: I swear he didn't know what I was writing about.  I just told him "I'm writing a blog about Autism Awareness Month. What would you want people to know about autism?'

Zac
Have patience with people who have autism.


If you choose to donate money to an organization this April, would you please consider donating to the National Autism Association?  Roughly 48% of autistic children wander.  Some die of a result. According to the NAA, in 2009, 2010 and 2011, accidental drowning accounted for 90% total U.S. deaths reported in children with ASD ages 14 and younger subsequent to wandering/elopement. To help families keep children safe, the NAA offers the Big Red Box. They can only provide these boxes as funds are available.  Please click here to donate $35 to help provide a box to a family.

The Anatomy of a Meltdown

We had a doozy of a meltdown today.  Very public, at church.  I'll break it down for you.

THE TRIGGER - this is it.  The THING.  This starts the meltdown.  This morning is was lemonade.  Or, more precisely, the absence of lemonade.  Our church has a hospitality area with coffee and donuts.  In the winter months they also have hot chocolate, in the summer, lemonade.  This morning, B wanted lemonade.  We've been in Florida this past week and it was warm there. So, in B's mind, it's time for lemonade.

At this point, actually at all points of the meltdown, this looks like a temper tantrum.  He's screaming, "I want lemonade" and crying.

It's best to remove him from the situation, to try to switch his gears.  So we go into the sanctuary.  I got a short reprieve at the this point to talk to a couple of friends because Ryan took him to the bathroom.

We met up in the sanctuary and B is still agitated.  He doesn't want to sit down with us.  An usher approaches us at this time (which is usually not advisable) to offer some lavender essential oil.  I rub it on my hands and try to grab B to let him breathe it in.  He's not having it.  He still protesting loudly saying he wants to be alone.  At his age, we do not let him be alone mid-meltdown for safety reasons.

I keep calmly asking him if I can try to help him.  He finally lets me up please him (pick him up) and we go to the far corner of the sanctuary by the exit doors.  He lays on his back, I sit down on the floor with my back to the congregation and rub his tummy.  The usher comes back and gives me peace and calming essential oils that I rub on my hands.  I wave my hands over B's face so he can smell my hands.  I keep rubbing his tummy and head.  I'm not sure how many minutes this takes but it lasts through the welcome, greeting your neighbors and part of the first song. Midway through the first song, B bundles up in my lab.  I rock him.  He's coming down now.

I turn to face the front and begin to sing.  B is curled up in my lab, his arms crossed over his chest, his eyes are closed.  We stay on the floor cuddling, rocking and praising.  The sermon begins.  About three fourths of the way through the sermon, B tells me he wants his tablet.  I explain this means going back to our seats with.  We join my mom, Sam and Ryan at our seats.  B plays happily on his new Mickey Mouse art app with his headphones on.  He knows what's happening around him. He answers when the congregation is asked to repeat. The headphones just help him filter.  

After church, he is tired.  He doesn't talk as much as usual.  He's very, very thirsty.  These was a reason he wanted lemonade, after all.  We run a few errands.  He gets a Sprite that he guzzles down.  At home he plays a while then naps.  We are both exhausted.

What can you do if you witness a meltdown?

• Don't make any assumptions.  Unless you know the family, there's really no way to know if it's a temper tantrum or a meltdown.  Best not to make any comments.
• Offer help in the form of a question: "may I offer....?" "Is there anything I can do?"
• Don't be surprised if getting the trigger item doesn't help.  The kiddo may be too far gone to realize what you're offering or the parent might not have wanted them to have it to begin with.  
• Don't offer bribes.  A sucker can not stop a meltdown.  B has to get calm first.  Then he will take your candy for sure.  
• Try not to stare.  This is so hard but so necessary.
• Explain what's happening to your kids so they don't stare "B's just having a hard time right now.  Let's give him some space"
• Give some space.  Sam used to have fever seizures.  All we could do was wait them out then help him recover.  B's meltdowns are similar.  We try to help him come out of it then help him recover.  
• Pray.  Meltdowns are hard on everyone.  They are hard on B, they are hard on us and I'm sure they are hard to watch.  Pray for B's safety and for a calming spirit.  

Questions? Ask away!

Marshawn Lynch

It's widely known/reported that Seattle Seahawks running back Marshawn Lynch has social anxiety.  He would prefer to do his job and be left alone.  At yesterday's Super Bowl media day he met for the allotted amount of time and replied with "I'm here so I don't get fined." 21 times.  

In the old days (approximately 6 years ago), I would have said "Suck it up buttercup.  There are parts of everyone's job that they don't like doing.  You get paid very well for your work.  Talk when people want you to talk."  Then I learned a few things.  God provided a wonderful teacher to me, his name is Brennan Bartis.

I've learned that somethings are not just non-preferred, they are painful.  

I've learned that people can grow more with boundaries, space and love than with restrictions and hard-and-fast rules. 

I've learned that repeating the same phrase over and over can be comfortable when everything else is uncomfortable. 

I've learned that some things are just not worth it.  

Does this mean that we shouldn't push Brennan or Marshawn or whomever to try new things and grow?  Absolutely not! But above all - DO NO HARM.  I patently disagree with forcing people to do painful things.  That seems like an awesome definition of torture.

There are plenty of Seattle Seahawks the media can talk to.  Richard Sherman seems to relish an audience.  Russell Wilson seems to like to discuss football.  Is it worth the pain to Marshawn Lynch to hear him say "I"m here so I don't get fined." 21 times? ESPN obviously loves it.  It's a news story.  I don't know Marshawn Lynch so I don't know how he feels about it.  I'd guess the time he was at his station was painful and he'd rather play just football.  Why couldn't he write a statement, give it to reporters and move along?

As with most things in life it's about balance.  Give and take.  But guess what, balance doesn't get things done the exact way Person of Authority thinks it should be done.  And it doesn't get ratings or site hits or retweets or whatever.

Why

I'm a big believer in understanding why.  Actually, in finding your why.  Why do you do what you do? On my education blog I have written about finding your why.  My why is service.  I even have it tattooed on my wrist.

I'm reading A Confident Heart Devotional.  This morning's devotion was about Gideon asking God why.  I might add here that I was reading the devotion with B man's feet in my back.  He'd crawled in our bed at some time during the night was was sleeping sideways between Ryan and I.  His feet were in my back and his head in Ryan's.

When we started this autism journey I noticed a lot of literature, research and blogs about the why of autism.  Why did kids get autism? How did they get it?  I decided early on that I didn't care about the why or the how.  Those were things I couldn't do anything about. Those are things that would likely drive me mad if I dwelt on them.  The fact is he has autism.  What are we going to do now? is a better question.  How can we insure that Brennan will learn and grow and thrive? is another good one.  I'm not at all interested in curing B's autism. It makes him who he is and he is fabulous.  My job with Brennan is the same as my job with Sam and Zac.  How can I equip them to love the Lord and seek His will for their lives? Those are things I can control.

So, this morning Gideon asked God why.  And God didn't tell him.  God replied with Gideon's next action steps.

There is a tension inherent in asking why.  Lamenting why something has happened will drive you crazy.  You will question God (which he doesn't mind at all) and it may diminish your faith.  But knowing why you do something is powerful.  That kind of why helps direct your path and provides reassurance at times.

It's the action steps that matter.  Boldly going without knowing why you are going.  Trusting and believing that God is in control.  That's where the rubber meets the road.

Proud

I share a lot about B-man.  I try to share the funny stuff.  He's incredibly funny.  I sometimes share the hard stuff because people need to know that he's not all fun and games.  I try not to share things that will embarrass him, my other boys and or anyone else.  I'm learning a lot about that from Jess at Diary of a Mom.

At any rate, all this sharing has an it's intended consequence, people love B-man.  They are a little more aware of Autism.  But I must warn you, people are unique.  People with autism and people without autism.  There's a little saying "once you've meet one person with autism, you've met one person with autism."

I love our community.  I am privileged to be friends with a lovely group of women.  These women are raising the most wonderful group of kiddos.  They are all so sweet with B.  They are patient with him.  They give him whatever he wants.  This pains me some times.  I have been known to say "You don't have to give him your slinky.  He's fine."

It occurs to me that some of this comes with being the youngest in a large group of kids.  The oldest look out for the youngest.  But it's something a little bit different.  They don't seem so put out with him when he gets upset.  They protect him.  They look at me like I'm an idiot when I try to explain that B is different.  They don't seem to care.

B chillin' at the trampoline park

A couple of weekends ago we were at a local trampoline park.  This was perfect example of how these kiddos treat B.  They give him his space when he needs it. They teach him when they can.  I didn't get any photos of them in the dodgeball game.  But they showed him how to play and protect them the best they can.  And they indulge him.

Sam holding B up while one of Sam's friends
stays on his knees to let B dunk on him. 

I'm so proud of these kids.  I'm proud of my boys who show them how to treat B.  I'm proud to be a part of this community.  A community that is teaching kids that's it's ok to be different.