Not Without Hope

Yesterday one of my very best friends, Rachel, shared a video with me.  (Incidentally, today is Rae's birthday! Oh Happy Day!) You might have seen the video on the Today Show's Facebook page.  It was absolutely heartbreaking.  The lady in the video is an autism mom.  She talked about her pain and heartbreak, the secret pain of autism. 

She talks about a particularly rough day with her son and the stares from other parents.  She talked about worrying about her son's future.  I get it, I totally get it.  Our situation is different than hers.  Her son is severely autistic and nonverbal.  B is verbal.  He can communicate and sometimes tell us what he needs.

I worry about a wide range of things as it relates to B.  Both the future and the present.  What will happen tomorrow? How will he live when he's older?  Will he hit anyone at school?  Will he lose it in math today?  Will someone say something hateful to him?  What if someone in his future apartment building tells him that rent went up $200 so they can steal $200 from him? Will I be able to find shoes that he can tolerate?  How's his weight? Is healthy?

We have a wide range of tough conversations as they relate to B.  Conversations at school.  Conversations with other parents.  Conversations with the big boys.  On particularly hard conversation with the big boys was the idea that he may need to live close to one of them after Ryan and I are gone.  Which will lead them to conversations with the people who they will share their lives with. 

I'll tell you what I don't have in common with that other sweet momma - she seems hopeless, or at least low on hope.  I am not without hope.  Because my hope is not found here.  My hope is in the LORD.  Which, I know, will lead people to questions.  The main one may be "How can God allow this?"  Why does God allow anything? To point us to Him, to show his goodness. 

And that's what I see in B, even in his struggles, God's goodness. 

Broccoli Piano

Every February, I attend the Texas Computer Educator's Association conference.  There are great sessions and lots of prize giveaways.  One year I won an iPad mini.  This year I won a Makey Makey and a book of Makey Makey projects.  A Makey Makey can be used to control a computer and utilized the static electric in objects to do it.

When I got back from TCEA, I wasn't feeling great.  I really wanted to go to bed and stay there.  That's what I did most of Saturday.  And the Makey Makey came in handy!  B asked me how to use it.  I told him to get on YouTube and he'd find out how to make it work.  When I got out of bed Saturday at 4:30 pm, he was so excited to have me come see what he'd done.

He'd found a website with a Makey Makey piano then used broccoli to power it.  B-man never ceases to amaze me! I can't wait to see what else he can come up with using the Makey Makey

R.I.P. Peppermint

Friday morning Ryan texted me "Peppermint is dead."  Peppermint, you will remember, is the gerbil B got for Christmas.

I texted back "Are you sure?"

Ryan immediately called me, "What do you mean 'are you sure?'?"

"Well, maybe he's asleep?"

"I've picked him up with tongs and put him in paper bag and he didn't move so I'm guessing he's not asleep."

Oh no! I was so worried about B.  He got on the phone to tell me.  He sounded upset but ok.  Ryan took him to school and I let his teachers, principal and behavior specialist.  I'll be honest, I wasn't sure how B's day would go.  One of his teachers just had a baby and is out, the other teacher answered my text that she wouldn't be at school that day and it was STEM career day.  I joked at work "When do we think I'll have to go get him?"  "Will B survive this day?" 

Thank God for small mercies - one of the subs for the day was B's teacher from last year who had retired.  He ended up having a good day. 

Peppermint a loyal, nice but nippy gerbil.  Amen

I had to run home (I ran out of coffee supplies at work and coffee = life at work so it was clearly a required trip).  B had written on Peppermint's bag.  I'd worried Ryan that Peppermint might wake up so he'd put the bag in the washing machine - if Peppermint woke up and ate his way through the bag, he'd be confined to the bag. 

Friday afternoon Peppermint was still in the bag so we were confident he had departed this world.  We made plans for a burial and funeral.  I put Peppermint in the freezer until the service. 

Sunday afternoon we had the funeral.  B searched Spotify for "funeral music" so we had some lovely instrumental music.  Ryan dug the grave with B's small garden shovel.  We decided to lay Peppermint to rest under B's window. Mostly the avoid the back yard and our digging dog. 

Below is the transcript of B's prayer.  I have to be honest, I had tears in my eyes after this prayer.  B comforted me "I know you loved him too, Momma." Yes, let's go with that...

Dear Jesus,
Bless Peppermint's soul with all your heart.  Forgive him of any sins he might have made. We loved him so much but now it's time to join him with Pa and Pops.  I will love him with all my heart for the rest of eternity. 
LOUD SCREAMING WAIL
Just drop him in already.

And that concluded Peppermint's service. 

Hope

My B-man is getting older.  Kids are great noticers.  They remember stuff.  I've been concerned this year about kids starting to remember B's outbursts and meltdowns.  This year he's had a couple of rough ones.  Most of them start in his classroom, with other kids.  I don't want him to be ostracized because of his rough times. 

I'm not a mom who wants or needs her kids to be super popular.  I've always wanted them to have one good friend.  One person who got them and had their back.  One person they'd stand up for as well.  One person who picks them first and who they pick first.  Someone who gets them. 

My concern has been that B's behaviors would keep people from getting him. 

As I said yesterday, B had a Valentine.  He'd asked a cute little girl in his class to be his Valentine and she'd said yes.  He took her a Hersey's Chocolate bar and my Harry Potter owl for her to see since she likes Harry Potter.  At bedtime, he wondered what she would bring him.  I don't know the little girl or her parents so I didn't know how she'd respond to being B's Valentine.  I told him she might not bring anything but that was ok because it was nice to have a Valentine. He was cool with that and excited about the day.  In the morning he wanted to make sure to dress nice for his Valentine.  He also wanted to wear red. 

He had a great time at the class party.  Ryan went because I was teaching.  Ryan said B introduced himself to his Valentine's mom in addition to working the crowd telling parents about his new pet sitting business (Lord, help me).  A friend of mine sent me a picture of B and his Valentine.  He's right, she is a cute little girl.

B's Valentine wrote him a letter.  A letter that made me cry.  A letter more valuable than any gift.  In the letter she tells B why she likes him.  "My favorit thing about you is that your sweet, kind and generoos. Your allways kind to people even if they're rude or unkind to you.  Your creative and silly." (typed exactly from a letter from a 3rd grader)

This sweet letter gave me hope. Hope that he does have and will have one good friend.  Hope that people will continue to see his positive, wonderful traits.  Hope that B's behavior wouldn't keep people from knowing the real him. The him that I love. The him that so many of you love.