ARD Day

I've said it before, and I'll say it again... raising an autistic child is like crossing a six-lane highway at rush hour, blindfolded, trying to find a nickel on the way.  Here are your options, pick the right one.  Everyone has an opinion.  Every parent with an autistic child has a set of things they'd do again in a heartbeat, and those they'd not wish on a dog.

Thing is, the thing you wouldn't wish on a dog might be the best thing in the world to someone else.

We're given a suggestion in the beginning from a doctor, people who have our kids at church, Mother's Day out, and from family members in the beginning that something isn't right.

From there, it's a spiral of confusion.

To whom do you listen?  Whose advice deserves heeding?

In the end, it's what's best for your child.  We search, we study, we listen.  But what's the right thing?  Which way do we go?  What's right?

On Friday, I received a call from our director of special education for the school district.  I am grateful for this call, let me get that out of the way.  I'm grateful for her time.  She didn't have to call me.  She could have let me be blindsided by what the pre-ARD (yeah, I just learned they did that) was going to suggest.

Before I say it, we've been riding high for far too long on the fact that he did kindergarten with no aid.  I guess we assumed that this was the insurmountable, and the rest was downhill.  Silly mommy.

First grade, even with a stellar classroom teacher and equally as stellar resource teacher, needs the classroom aid.  A lot.  Like way too much.  I've known that his behavior has been an issue.  They communicate with us, we support their needs at home as much as possible.  We do our best to continue what they do at school discipline-wise at home, being as consistent as we can.

The call was to tell us that the suggestion is going to be to add Life Skills into his day.

I didn't know what to think about this.  I've been told that there's no way he needs to be in a self-contained classroom, and I think in kindergarten and first grade, that's been true.  But the truth is that the sheer amount of stuff to take in is just too great.  Too disturbing.  He's not learning as much as putting up with the discomfort of the room.  Even with the aid, with a super-understanding, organized teacher, he's just not thriving.

I can't tell you how embarrassed I am at my internal reaction.

She might as well have kicked me in the chest.

Just when I think I've accepted who my son is, what his challenges are, and I love him for who he is, I'm caught off guard.  I didn't know what to think.  My head was swimming.  The special needs director even gave me her cell number and told me to use it if I had any questions.  My reaction?  As politely as I could muster, this is what I said:

Thank you.  If I figure out what the questions are, I'll ask them. 

Is this what I was hoping for?  No.  But what I was hoping for wasn't best.  I worried all weekend.  

Sunday morning, when I picked Ryan up from CE, I realized there was someone who was educated, experienced, and knew my guy.  I couldn't get to her fast enough.  In just a few minutes, I had an opinion that sifted the others and funneled the noise into something I could understand.  

I'm thankful for so much this morning.  But more than anything, I'm thankful for a God who hears my cries.  Who has my... and Ryan's... best interest at heart.  It's no accident that we called Redeemer a couple of years ago and asked if we'd be welcome.  It's no accident that there's a lady with a heart for kids like Ryan who is with him every Sunday.  

So I'm off to the meeting.  I'm still a bit nervous, but I know it will be okay.  Why? 

Romans 8:28. 

And we know that for those who love God all things work together for good,for those who are called according to his purpose.

Thanks be to God!

Brushstrokes and Memories

We have so much different.  We have so much hard.  There are times in great supply when we wonder how much more we can take.  There are so many times that we just so want to make sure the kids have great childhoods and try as we might, it just doesn't seem like that's happening.  

Holidays are hard in new ways.  

Broken routine is everywhere.  New stuff adorns a few parts of the house, mommy is busy cooking and baking, there are extra people.  

I looked forward to this as a child.  Very few of the people I looked forward to seeing are still alive.  Sometimes they're at my house!  Other times, we're with the newer folks I look forward to chatting with around the table.  

There's always been something about the table in our family.  Everything seems to happen around the kitchen table.  I sat for hours on my mom's lap as a child, listening to the adults visit over coffee and pie, beer and chips, beans and cornbread.  I couldn't wait to be able to sit and visit like they did.  With them.  

I guess I didn't realize they couldn't wait for me to get older.  They all got older too.  

But as they fade away, as they go on to be with the Lord, new folks come along.  The younger ones get older, as did I.   Just look at this beautiful young lady holding my daughter.  

That's my baby sister!  Would you believe she was in my lap in high school and college just like I was my mom's?  And now look at her.  We had a wonderful time being together over the weekend.  

Someday this little lady will be at the table, too.  And Lord willing, her little ones will join us as well.  

Can't forget the boys.  Oh, my sweet princes!  Here's the family shot, also known as the best I could do before they were ready to grab their shorts and t-shirts.  I think I actually mentioned to them that they should humor their mother.  Two of them were still.  I think that's a pretty great score!

Richie will join us to visit around the table.  Maybe not all the time, because he does like quiet.  But he does love his family.  

Then there's our big boy.  The one who is teaching me to love.  The one who God used to stretch my definition of what love is.  What faithful is.  

He remembers the kitchen table I grew up around.  He asks for the hands who taught me to prepare the food to draw the important ones.  

I wish he could tell me what he remembers, but he remembers.  The littles don't, or they don't remember much.  They were simply too young.  But he remembers her.  And her microwave.  It was black.  He's right.   

I remember dropping eggs in brightly colored cups with the one who helped them Saturday.  We used Nanny's white cups for the deep colors.  They were just the right size.  I remember the pretty blonde girl as she dyed her fingertips as much as the eggs as the same fingers show my precious ones how it's done.  

The eggs bring more memories.  The yellow counter, the dresses that came with sunhats.  The sunrise service, the pies, the ham, the sprawling backyard and the twenty-four technicolor eggs we hid... or were there thirty?  

Just twenty-four.

And as the hunt commences, I remember another little boy and little girl hunting eggs.  We hid, they hunted, then repeated.  Then there were the baskets full of candy and bunnies always waiting in the front entrance.

He loves microwaves.  He draws them, looks at them, remembers them.  He hasn't been to Nanny's in nearly three years, and he remembers what kind of microwave she had.  He can tell you not only the color, but the brand, and that it had a turntable.

The anchors in his memory may be different than mine, but they are there.  Maybe someday he can tell me what else he retained from those days on the hill on Morris Creek road.  But the memories I have painted a backdrop that each of us in the family has a part of.

The rest we paint as we live our days.

From bright to dark, sparkling to dull and every shade between we dip our brushes and paint our family culture.  Starting with the set we were given, we add a bit here, erase a bit there.  We cover over the things we didn't like, looking to the Master Painter to choose our colors more cautiously.  Carefully.  Purposefully.

Because they remember.

We read the stories of Christ's death, burial, and resurrection because they remember.

We do the Easter things we do because they remember.

Because just as you can't see what multicolored fingertips bring to my mind, we can't see what Nanny's black microwave brings in Ryan's.

Because I hope and pray that they remember these things we did and see not just some good memories, tasty food, and people they love... but that they see the love of Christ in every brushstroke.

Thanks be to God for the brush, the colors, and the inspiration.

This is My Brother

"Love wash over a multitude of things; make us whole." ~Sara Groves, When it Was Over

It's Autism Awareness day.  

Technically it's autism awareness day every day on our little corner.  So when April 2nd rolls around, it catches me off guard every time.  Not that I don't appreciate the... uh... holiday.  We do.  We feel supported and loved by the extra Facebook posts and tweets posted for just that reason.  

I never know what to write today.  I could go on and on about all three of our kids, about Eric and I, and things that autism has taught us.  That and it's truly every day at our house, not just one day or month.  

So I'll let the faces do some talking.  

That's my younger son, Ryan's little brother Richie.  While he does not have autism, he is affected by it every day of his life.  He does not know what life without autism is like. 

                                     

This is our daughter, Ryan's baby sister Maelynn.  She, just like Richie, does not have autism, but was born into life with autism.  This is her day to go to Build A Bear Workshop in support of her brother and families like ours.  She's holding the heart for my Autism Speaks bear, putting love on it before it's sewn in.  

My littles don't know what life is like without autism.  They don't know that other kids' big brothers are capable of living without routine.  They don't think he's weird, abnormal, or uncool.  They think just the opposite.  

Yes, they get frustrated with him when he takes a toy from them.  Or when he doesn't understand and takes the rest of their milk.  But they give him grace.  

They adore their brother.  They don't hang their heads in shame when he melts down in public.  They simply remind him that it's okay.  They do their best to comfort him.  They wait patiently for him to calm.  They don't cry or fuss when we leave somewhere because Ryan is unable to handle it.  They know.  

They are not autism-aware.  They are Ryan-aware.  

They go to therapy twice a week.  They sit in the hall, coloring, reading, trying to be quiet.  They walk around Baylor with me.  They ride the 50 minutes one way, usually having risen early from their naps. They will do the same for a week in June for Baylor Autism Resource Center day camp, but they'll wait three hours every day for him to be through. 

They wait for dinner when our speech therapist is here when she can get here.  She's the only one for a handful of counties... yes, COUNTIES... and they're currently enjoying a break because she's on maternity leave.  There's no one to take her place. So she comes when she can, which is usually anytime between 4:30 and 5:30 PM.  They seldom complain, and if they do it's not about their brother.

They listen to the screaming.  

They see him hit himself.  

I wish I could say they've never participated in these things, but I try not to lie. 

They worry about him.  They pray for him.  

They adore him.  He's their hero.

They also see us, their parents, melt down.  They see our tears when we don't know what to do. 

What would they tell you if they could?  What would they tell you about autism, about autism awareness, if they were a bit more than 3 and 4 years old?  

I bet they'd tell you what Richie does when he sees these pictures: 

"That's my brother Ryan when he was little!"

This is my brother at the park at Grammy and Grampy's. Silly Ryan!

 

This is my brother with his old drumsticks!

This is my brother in the water. 

This is my brother playing with me and my sister at Morgan's Wonderland. 

This is my brother playing with my sister's kitchen.  He likes microwaves. 

This is me and my brother Ryan playing in the sandbox. 

MY BROTHER.  

Not "my brother with autism" or "my autistic brother."  He doesn't focus on the hard things.  He doesn't see his brother as frustrating, hard to deal with, or noisy.  He simply sees his brother.  His hero.  

He doesn't yet know that his brother is different.  If he does, I can guarantee you that it doesn't bother him.  And I hope it stays that way.  I pray that he will always love his brother with a simple, forgiving, graceful love. 

The prayer I have for Richie and Maelynn is similar to the one I have for everyone who is likely to come into contact with an autistic person, otherwise known as all of us.  Sometimes you can't help but notice the difference.  But look past it.  Look to the person God created in His image.  

Look to the preciousness of life itself.  

Look to defend those who are less able to defend themselves.  Not because you know somebody now, not because you might meet someone tomorrow, but because that caring, loving attitude of the heart is Christlike.  It is right.  

Because everyone is somebody's son.  Daughter.  Brother.  Sister.  Friend.  

This Autism Awareness day, I pray that everyone would come to look past differentness in everyone else.  To judge less, to love more.  But the most earnestly, the most desperately, I pray that the body... the church... believers... would band together and not only accept those with special needs into the church, but would seek them.  That there would not only be an attitude of welcome, but an educated preparedness to truly be equipped to welcome.  That pastors, elders, deacons, teachers, heads of committees, and entire church bodies everywhere would seek to love and serve not just the most normal, but to seek to love with a gutsy grace that isn't afraid of different. 

Because Ryan isn't just the noisy kid behind you.  He isn't just the kid who practically mows you over running to the microwave.  He's our son, our brother, our grandson.  We pray that you'll see the sparkle in his eyes, the excitement in his hand-flapping, the happiness in his voice as he spouts off lines from Toy Story, Thomas, and Cars.  We pray that you'll be aware of autism and the effects it has on his life, ours, and the rest of the world, but even more, we pray that you'll remember to see Ryan.  

And we thank the Lord for those of you who have and are this for us.  

There is a love that never fails
There is a healing that always prevails
There is a hope that whispers a vow
A promise to stay while we're working it out
So come with your love and wash over us.

~Sara Groves, When it Was Over

Thanks be to God for this kind of love, for those who share Autism Awareness, and for our unshockable, gospel-driven, gutsy-graceful church.  

Blue Streak

I am weary with my moaning;
    every night I flood my bed with tears;
    I drench my couch with my weeping. Psalm 6:6

It's the topic that permeates everything we do.  It's the destination to which my mind wanders and often jumps.

It's the thing that bothers me.  If there's anything that challenges me to the core of my being, this is it.

If there's anything I can rattle on about, this is it.  It seems that I can only get two sentences into a conversation before something autism-mama hops from my heart and falls off my tongue.

If there's a topic I sit to write about and grow weary of hearing the words leave my fingers, this is it.  And yet, it's something I'm compelled to talk about.  Write about.  Share about.  Cry about.  And honestly, I'm sure at times that someone logs onto Facebook and rolls their eyes at another. Autism. Post.

It's that darned autism.  It's autism awareness.  Blue lights.  Puzzle pieces.  Meltdowns.  Stimming.  Hand-flapping.  Screaming.  Routine.  Therapy.  Therapies.  Diagnoses.  On and on and on into oblivion.

But again, here I sit.  Here I sit because while I'm tired of the broken record I am, I'm more tired of the stigma.  The fear of going places.  The knowing that everything could either go fabulously, gloriously well every time we step out to go someplace as simple as a convenience store, or it could end in head-beating, fist-banging, foot-stomping heartbreak.

It's one of those things that I avoid mentioning, because frankly, June Cleaver didn't whine.  A nice mom wouldn't whine.  A nice, caring, loving mom wouldn't complain.

Well, guess what?  June Cleaver didn't wear jeans and t-shirts, either.  She had a teeny, tiny waist, vacuumed in pearls, and certainly never fed her kids those 99 cent pizzas.  Never.

And I'm pretty sure the Beav wasn't autistic.

So where did I get the lie that I should never tire of the repetitive?  Where did I get the idea that it would be sinful to mention that this is hard?  That I'm flat sick to the teeth of watching him struggle to enjoy things that seem so obviously easy to others?

The truth is that June Cleaver... the ones we'd see to be the perfect mom... were apparitions.  There's no such thing.  We are all fallible and prone to exhaustion.  And let's get this straight... exhaustion and fatigue with the way things are going does NOT mean I'm ungrateful for my kids.   You know what it does mean?  I'm human.

Just like David.  Yes, the man after God's own heart himself.  Flip to the sixth Psalm.  Notice that David cried out in frustration.  Exhaustion.  Fatigue.  Just sit down and read through the Psalms and you'll feel David's pain and weariness.

Read on.

After confessing his humanness, his problems, and the overall unfairness of it all, he is given a heart of worship.  A heart of peace and even thankfulness that God understands.

Just this morning, I didn't want to get out of bed.  There's so much to do, and yesterday was another day of cramming things together so that I get the things done that my family needs me to do.  More laundry, more dishes, more cooking, more juggling this and that.  My husband came in for the second time, empathizing that he didn't want to get up this morning either.  All dressed and handsome already, he sat down on his side of the bed, took my hand, and said, "Honey, how about I pray for your day?"

As I told Eric that there was just too much to do and I was just tired, he took my hand and carried my concerns to the Lord with me.

Yes, I'm still tired.  Yes, there is still a ton to do.  But I was, as God promises in Ezekiel,

 (And) I will give you a new heart, and a new spirit I will put within you. And I will remove the heart of stone from your flesh and give you a heart of flesh. Ezekiel 36:26

Although there is still physical just-tired-ness, my will to keep pedaling and keep putting our story out there was renewed and refreshed.  And in the renewal of my heart, the tiredness, aches and pains, and other physical wearinesses fade.  

But if I hadn't gone ahead and given voice to the truth... that I was frustrated, tired, and discouraged... if I had not reached out and asked for help... I wouldn't have seen the amazing, God-given encouragements and heart-replacement I needed today.  

So go ahead.  If it's hard, say it's hard.  Call it what it is.  Once you've painted that picture, step back and watch the contrast between the frustration and God's glory.  

Trust me.  It's breathtaking.  

No, it's breath-giving.  

Thanks be to God!

Max and Moot

So often I just can't understand him.  His speech is a roller coaster of varying degrees of quality ranging wildly from slurred and muddled to clear and crisp.  The clear and crisp is always with a delicious, adorable seriousness.

We waited for those first real words.

We waited... and waited... and waited some more.  We are so thankful for his words!  Still, while he can speak, his verbal communication still lacks.  It is better, yes.  And it is true that he can pronounce just about anything he wants.  The complications arise when he's to think and express himself verbally.  So often the first word or two will come flying out, clean and clear as day.  The first few words are then followed by a garbled smear of something unintelligible.

Realizing the treasure of his speech, we tend to try hard to hear what he's saying.  We don't want to miss anything he's saying, and honestly even the repeated phrases from movies and shows and apps are precious.

This morning, on the way to school, Ryan kept saying something, but the only thing I could remotely get was "Max" and "Moot".  Hmm.  Must be a new cartoon he saw somewhere.

Then he leaned over, and with the car stereo on tape with no tape available, he clicked down the volume, saying each number as he turned the knob.  With hand-flapping, humming excitement, he counted down until...

you guessed it...

"mute" appeared on the display!

He said "moot" but after a couple minutes, he clicked the volume up, number by number again until it got to "Max".

He knew exactly what he was trying to say.  And with a little minimalist Ryan-argument, I convinced him that it was pronounced "mute"!  

This is one of his new games in the van on the way to school.  His other one is super adorable.

On the way home from ABA the other day, he was in the front seat because his brother and sister stayed back with their Granny.  He fished a penny out of the ashtray, laid it on his leg, and mutter-sang something about a little money.  Then it was two little monies... something unintelligible... one came along and then... something unintelligible... and I realized he was not just talking along, he was making up a little song and game with the spare change!

He played that little game all the way home.  Now he does it on the way to and from school, all the way from one to ten and back again.  

I never thought that a little song like this coming from my seven year old would thrill my soul.  

I never thought I'd love the idea that my son liked to count down the numbers on the volume and found such joy in doing so.  

I never knew my heart could be so full and so tired and so exhilarated and so frightened for the future all at the same time.  

And I never knew that looking into the face of my babies could teach me to be so thankful for and rest in the sovereignty of God.  

Thanks be to God for the little games he plays that are so very opposite of little.  

Home Project

The other day, Ryan was in a fit about the difference between spring break and school time.  He was quite unhappy and confused at the change of having to do homework instead of what he wanted to do, etc.  I got in the floor to do his "word eraser" which is really his reading fluency folder from school, and  before I knew it, we were snuggling in the kitchen floor, giggling.  He needed calming proprioception, which for us, usually means pressure.  I'll press his joints together, rub on his back and legs, push on the bottoms of his feet, and even down on top of his head.  And you know what I caught myself thinking?

Why don't I do this more?

Why didn't I convince myself of this before?

Let me back up a bit.  For a long time, we've operated under the "let's get this behavior under control" mode.  And yes, behaviors such as hitting himself, yelling "no" when he's told to do something, screaming at random, and just plain throwing a fit when he doesn't understand must be met firmly.  Loss of privileges is still in play here.  But the attitude of our hearts while attempting to shape his was one of fear, mostly of the future.  Of how he'd fit into places outside our house.

Then I started thinking about this being his home.  Of how I loved going home, and now love going home to Eric's folks.  And my own words from the "Vacating" post keep ringing in my head.

We can breathe.  They know us here.  They love us here. 

We can be us here.

We needed a self-check.  A report card of our hearts and attitudes, the basis of everything we do so automatically. 

What we've loved so much about home is the same things we want to give our kids.  They can be who they are.  They don't have to think so hard about every little thing they do, although we do expect manners and kindness and loving attitudes.  

So if Maelynn needs to cry about having to eat her vegetables or for not getting to watch what she wants to watch, she can go have a good cry in her room.  

If Richie is angry and needs to pace and grumble and work through his frustration, he is welcome to go in his bedroom and do so.  

If Ryan, who has maybe less than half the verbal communication and expression skills of his brother and sister is hitting himself and screaming, maybe it's time to roll around in the floor and take some time to constructively help him find his place in the world with proprioception and snuggles.  

At your house, if we're ever there, we'll not be rolling on the floor.  We'll not roll on the floor of a store, either.  You will likely catch us snuggling and participating in proprioception at church during a service, but I'll promise we'll keep our seats.  

Why?  

Because he needs a physical anchor, just like we do.  He won't say it, and neither will Richie or Maelynn.  But we know them here.  We love them here. This is their place to be who they are, which makes sense, because we're to help them become who God made them to be.  Yes, they need guidance.   They will get it.  But they will also get a place to air their hearts.  

If they don't learn to air their hearts safely with us, how will they learn to pray?  If we can't help them through things and help them learn God's principles, who will?  If we don't start now, then when?  

So if you knock on our door and catch me on the floor with one of our kids, or if you see us in the back of the church (where we sit to avoid being distracting) pushing on his hands or legs with him smiling in relief, feel free to ask questions... but please don't be shocked if we don't stop.  

Just as Eric led me into his parent's house for the first time, calming my fears by saying, "It's okay, they know me here," someday our kids will lead friends and even spouses here.  And I pray they'll be able to honestly say the same thing.  

Thanks be to God for HOME.  

Happy Birthday, Eric!

It's been busy.  Crazy busy around here.  And while my dear husband is playing with his new toy, I'll take a minute to tell you about what kind of guy sits at my feet, goofing off after a hard day of work and a fun evening of birthday.

He loves his family.  And not just, "Yeah, they're cute."  He gets in the floor with them, gets dirty, and not just dirt-dirty.  Autism dads especially know all about late potty training and the cleaning messes that go with them.  Yeah.  As Richie would say, he gets a punch on his man-card for that.  For real.  A big one.

When we had babies, he insisted (and still does, when one of the kids wakes in the night) on getting them.  Yes, he brings them to bed with us, but he rises once they're good and asleep and puts them to bed.  And it's not just for me that he does this, although he knows and will tell you that I'm with them most of the rest of the time.  He wants to give this to his kids.  It's something he wants to do for them.  He always has.

He's not afraid to listen to me.  From home to school, we're married.  And by that, I mean that I did what he does now, and he does what I do at home when he can.  We met working, and he respects my work and my opinions about all things band.  Not every man is willing to do that.  Not all the advice I've given has been helpful, and in those times he's gracious.

He's not afraid to be wrong.  Wait, no... he's afraid of being wrong just like the rest of us, but fights to overcome that fear for the good of us, the kids, and to the glory of God.

Which reminds me... every night that he's not working, he's here reading stories after he helps with bathies.  And not just any stories.  He reads the cute, cool ones, but he also makes sure to end with a story from our Jesus Storybook Bible.  Then he prays with the boys, I pray with our girl, and we put the kids to bed.  He holds me and prays for me when I'm scared, sad, or super happy.  He sings out loud in worship.  Another mega-punch on the man card.

He's the kind of man I want my sons to be and my daughter to marry.

He's the kind of man I hope and pray will be around for another 42 years.

Every day I love him more than the day before.  Every night, I thank the Lord for giving us each other to argue with, bless, laugh with, cry on, and hug.

I wouldn't want to navigate life with anyone else.  I always wanted someone wonderful, but God out-imagined me far and away with Eric.

Thanks be to God for out-imagining me on so many levels... but today, especially for giving me such an amazing man with which to share this life you've given.

I love you, Eric.