on autism and epilepsy

This past February, our lives with Moose took a dramatic turn.  Being autism parents, as many can attest, has its challenges.  But, a new layer of concern, happened one ordinary Monday night.

My husband was reading bedtime stories to the boys as I put laundry away in their room.  He called for me, because Moose started to throw up during the reading.  No big deal, it was flu season, right?  Wrong.

He was unresponsive, gray, and for a few moments, we thought maybe he had shoved a toy in his mouth and started choking.  His jaw was clench shut, his eyes were glazed, and he was choking on his vomit.  After that, I don’t remember much.  I knew it was a seizure.  I remember my husband yelling.  My son unresponsive on the floor.  Fumbling.  Numb. Desperate. It was the scariest night of my life.

Within minutes, I ran barefoot in the snow to my neighbor.  She is a special ed teacher, maybe she knew CPR?  She came, frantic to help.

Paramedics arrived shortly after.  After about 5 minutes, he came back to us.  It’s all a big blur, but as we rode to the hospital in the ambulance. I knew life as we knew it was over.

 

***

As of late, I have been quiet on this blog.  It chronicles much of my history as a special needs parent.  But, just as this blog saved me in the early days of an autism diagnosis, I hope to reconnect with the families out there searching for answers and struggling all the same.  Autism grows each year, and epilepsy is just as mysterious of a condition.

Autism and epilepsy, are often, (30-40% of the time anyway) comorbid conditions.  I hope that sharing our family’s story and Moose’s journey help those in need of comfort, answers, and community.

 

With love and light,

Nicolette

 

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of muppets, mayhem, and the hell ya homeschool

montessori homeschool

Sesame Street has a muppet on the spectrum.   We can order gluten-free pizza from almost any joint in Chicago.   We are no longer drowning in the alphabet soup of ABA, IEP, and LMNOP.

The world has stopped spinning at a break neck speed that was hellishly long nights and even tougher mornings when we were “doing public school”.  I’m not gonna lie, homeschool is a lot like childbirth, every day both beautiful and impossible, and somehow, by the grace of God, you just get through it.

We are living slowly, day to day, taking the time to sleep.  Time to nature walk.  Time to reconnect to each other.

Time that was lost and eaten and spit up by the demands you think your child needs: tons of school and therapy and run here and there.

The answer was there all along for us.

It was here.

At home.

Some mornings are perfect.  Some mornings I think I must be totally insane to do this: homeschool.  But here I am.

I am doing it.

We are doing it.

He’s sitting, working, leaping, laughing.

The words continue to grow from Moose each day.  Today he identified action verbs.  He fell entraced with Montessori cylinders.  He mastered the Pink Tower from Montessori.  He purposely made mistakes and checked my response.  He made toast today.  Toast! Shout it from the rooftops!

It’s working.   I see the twinkle and light come back in his eyes.

I remember some school officials telling me not to bother having my son learn sounds, and write: because he’s not ready.

Ready or not, here we come.  I will wake every day, armed with all that God has given me, and some coffee and give it my all.

He is learning.  Maybe not at the pace you expect in the common-core ladened NT world.

But at his pace.

montessori homeschool

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thank you, kind stranger in the parking lot

random acts of kindness

The boys and I set off this morning to visit a friend who just had her third child.  Given that I have been swamped with work and homeschool and life, I didn’t have a gift. We quickly stopped at Marshall’s to pick up a few outfits and board books.  A few years ago, when autism was at its height, such an errand would have left me in a cold sweat.  Now, I have no fear.  I take the two of them in tow everywhere alone: crazy sounds, tantrums, and all.

Moose has had an increase in rigidity lately.  If life doesn’t go as planned, even with verbal reminders, QARs, and visual schedules, all hell can break loose in any given moment.  And it did.  He wanted to go to the grocery store next to Marshalls, and the flailing and tantrums began.

Luckily, little brother Monkey knows the drill when Moose has a moment: stay calm and do everything I say.  He received an academy award for best supporting sibling in the dramatic films starring Moose.

Within a few minutes, we made it into Marshalls.  I made a beeline for the books.  Moose squawked happily and spun and did his new exploratory behavior-touching everything.  I no longer apologize for his behavior.  I no longer feel the stares and the glares of patrons expecting their piped pop music and random cell phone chatter.

While looking at the board books, Monkey fell in love with-a-book-I-must-have-oh-please-oh-please-oh-please.  It was called Little Blue Truck.  I told him no, we are here for the baby and the baby only, it was just your birthday, and we have therapy and medical bills up the wazoo and no, you have literally 5,000 books at home.

I set the book on a ledge near the check-out, and Moose began tantruming again.  We paid, and went on our merry way.

We made it to the van without more drama, and I took a few deep breaths after the boys were buckled and ready to roll.  I began peeling the labels from the books, and stuffing it into a gift bag I saved from when the world showered me with random gifts when my sons were babies.

Suddenly, a knock at the window.  It was a man, heavy-set, with a crestfallen look on his face.

He had the Little Blue Truck book in his hands.  At first, I was confused.  Did he think I paid for the book and left it?

I rolled down the window.

“I want your son to have this.”

Wow.  He handed the book to me.

“You are doing one hell of a job.  I have a little boy with autism too.”

He smiled.  My eyes filled with tears.

He turned to walk away.

“Thank you, sir,”  I called out.  “You really made my day.”

random acts of kindness

***

Some days, you don’t know the angels behind you in the check-out.  The people watching the scenes unfold may have the same hardships at home.  Sometimes, mere acts of kindness, speak volumes of the beauty in this world.

 

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early birds and late bloomers: the missing ingredient from public schools

John Taylor Gatto quotes

My sons are polar opposites.  Monkey starting reading, on his own accord, rather early.  If I present a new topic to him once, he masters it.  Moose, on the other hand, needs tremendous amount of time, energy, and attention to learn new topics.  Repetition, movement, and music seem to be the modalities he responds to best. With a little under three months since Moose joined our homeschool unit, we still have a lot of adjusting to do!

What is happening in my lil’ homeschool happened in my classrooms as well.  Students enter your classroom door with an incredible variety of levels across all areas.  Differentiation is the buzzword in education these days, and teachers can differentiate until their energy levels tank out, and the simple fact remains: it’s humanly impossible to customize each student’s education.

Unless…you homeschool.

Sure, in the classroom, there’s guided reading and math groups, and workshops: but consider the 1:1 attention a child receives a day in schools.  It’s virtually non-existent unless that child is pulled out with IEP services, OT, ST, PT, etc.

Small groups still don’t have the same customization of 1:1 attention. That’s why homeschool works better, and even then, with two little ones in my care, it’s still damn hard.

I come to the homeschool table with a variety of grade levels and school environments under my belt.  After leaving the classroom, I ran a small tutoring business for five years, and worked 1:1 with special needs kids. I also have a PhD in the University of Autism.

I’m still the first to raise my hand and admit, I don’t know it all.  Not even close. But I know where to look and what questions to ask.  I know when to ask for help and when to fire said help.

So, a few months in, I’m reassembling Team Moose.  My mom is helping.  My best friend, Zia, is helping.  We recently found a new speech and OT that is beyond a dream come true…I can WATCH the sessions. There’s a symbiotic relationship already!

It takes a village, they say.  No, it doesn’t.  It takes an Olympic team of heavy-weight champions.

What better people to help us, than the ones most invested.  Those who really LOVE Moose.

It’s the principle that guides Son-Rise and RDI: it’s love.

Love is what makes a homeschool different than a public school.  It’s the missing subject really.  Sure, I loved my students when I was in the classroom.  I was the teacher who went to birthday parties and did home visits, especially at my first school.

Nothing in this world matters to me more than my children.  So, it was high time to take matters into my own hands. Running a homeschool and a small business and a home, for that matter, is exhausting work.  I’ve never worked harder in my life, frankly, than I have the past year.

But fueled by love and grace, we will get there.

John Taylor Gatto quotes

 

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Deschooling: The Great Public School Hangover

homeschooling and autism

I’m closing in our first year of homeschool with our youngest son, and it’s been over two months since I dove headfirst into homeschooling Moose.  From what I gather around the interwebs and every single book I’ve read about homeschooling, there is a period of “deschooling” that occurs once you wave farewell to traditional school.

I figured, HA! Deschool?  Really? We have SO much catching up to do! There’s no time to waste! Hurry! Rush! Plan!  If I can teach a class of 30 8th graders in Chicago, I can handle my two hoodlums.  Let’s do this!

How wrong I was.  I needed to ease in, not dive head first.  Hence, the “deschooling”.

Homeschool is a different beast.  It’s not learning from the hours of 7:45-2:45.  It’s a hands-on 24-7 job.  I thought teaching was tough, but it doesn’t measure up to  Sometimes we have character education at 4:00 am.  Sometimes informal, but real world math happens at the grocery store.  Every homeschool is different, just as every person is.  When you throw special needs homeschooling into the mix, well, you have a responsibility that is as heavy as Atlas carrying the world.

I’ve schooled many children over the years.  Over a 1,000 by the end of my teaching career.  But your own?  The process is different.  The investment is far deeper.  School is school, filled with procedures, routines, grades, testing, and tight schedules. Homeschool isn’t that.  It’s fluid, adaptable, and real.

Don’t worry, kids.  This isn’t on the test.

There is no test.

In life, the test is first, and the lesson second.

In school, we have it backwards.  Teach the lesson, then test.

Homeschool isn’t school, it’s life.

Now that I have been outside the public and private school system for a few years, my perspective is far different.  They say hindsight is 20/20, but know I feel like I have x-ray vision when it comes to the education of children, specifically my children.

We are going about this ALL wrong.  I used to make kids sit for 7 hours.

Kids are built to move, not sit.  I have two sons who are literally allergic to sitting in desks.

Kids are natural learners, and we suck the life out of them with standardized learning and testing.

Deschooling isn’t a break from public or private schooling, for me, it’a reevaluation of what education is.  My real education started the day I finished graduate school.

I’m still in the process of relearning about learning. Still in the process of defining what our homeschool is.  But that definition isn’t up to me exclusively, my sons are the architects of their own learning.

There’s no out-of-the-box curriculum for either of my sons.

For now, I will look to one of the greatest minds in education, Maria Montessori.  Her words are simple, profound, and deviate from what regular school actually does, but something that every parent and teacher needs to hear:

Follow the child.

homeschooling and autism

 

 

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Farewell, Chicago Public Schools. Hello, Homeschool.

public school to homeschool

Our days of fighting the morning beast are over.

Starting two months ago, Moose full-on STOPPED sleeping.  Like falling asleep close to midnight, despite his 8:00 bedtime.  He would itch his skin until he bled.  Refused to eat breakfast.  Fought me kicking and screaming to avoid his school uniform.  The morning, on his developmentally inappropriate amount of sleep, was a parent’s worst nightmare.  Kids at Moose’s age generally need 10-11 hours of sleep.  He was getting 6.  Not good for a kid with autism.  He started biting and acting out.  The poor kid.

I looked and felt like a mother with a newborn who never slept.  So, we would roll up to his school, sometimes two hours late.  It was bad.  And it kept getting worse.  Some days, it was just too hard to even fight him.  One morning, he bit me five times.  We didn’t even bother showing up to school that day.

I prayed.  I prayed harder than I ever had in my life. The big, wet tears kind of praying that gets ugly.  I asked God, please give me a sign.

Then, the IEP meeting from hell happened.

That was the sign.

No, it was more than a sign.  It was a giant SLAP in the face with a sledgehammer.  No one was on the same page.  No one.  I left there deflated and defeated.  I knew what I had to do.

School just wasn’t working anymore.  Moose’s behavior dictated that.  The eczema, food strikes, insomnia, and the rage were the big signs.

Without words, Moose shouted the loudest in those final months of public school.

So, a few weeks back.  I did it.

The scariest thing I have ever done.

I brought him home.

public school to homeschool

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on homeschool, learning, and new chapters…

dinosaur unit homeschool

A few months into homeschooling, and I realize, that my years of teaching and my master’s degree in curriculum and instruction, don’t mean so much.  I ran into a father I knew from my sons’ school a few days back.  He casually mentioned that the only reason I could homeschool is because I was a teacher.  I laughed, and said, if anything, it’s a detriment! My teaching years were rough, and it’s one of the very reasons homeschool will ALWAYS be on the table for my family.

This fall, I had only one “student” enrolled here at the homeschool.  My youngest, dear Monkey, is by far, the most challenging teacher I have had.

I no longer look at him as a “student”, but rather, a partner in this messy process known as homeschooling.  Sometimes, it’s messy. Sometimes, it’s so beautiful, to see a connection made, a lightbulb moment.

I’ve learned that so much time in a school day is wasted.  Kids can accomplish great feats in a 1:1 environment.  Kids can learn to read without a structured program or curriculum.  Some readers are born from love of shared reading, like Monkey.  He astounds people at how well he reads.  I never taught him, he just absorbed the culture of our home.

I’ve learned that learning happens best in the real world, on the move.  I’ve learned for most kids, ignite the fire of curiosity and step away.

I’ve learned WAY more about dinosaurs that I’ve ever thought possible.  I could be raising the next dinosaur whisperer.

dinosaur unit homeschool

I’ve learned that kids sitting in desks and chairs is quite possibly the WORST thing to happen to childhood.  Working on the floor is grand.  There’s more math at the farmer’s market or grocery store than there is in any primary math curriculum.

I’ve learned fresh air cures all. Recess should be early and often.  Monkey and I walk at least a mile or two a day.  He is much more focused after a long trek with the dog.

I’ve come far in this semester, and now, it’s time to reflect a bit.  Homeschooling has magnified the ugly parts of me: my impatience, my disorganization at times, and my tendency to burn the candle at both ends.

It’s reinvigorated the teacher side of me: the playful, the curious, the fun.  Except, this time, it isn’t other people’s children.  It’s my own.  Sure, I don’t have the energy I did when I was 23 and childless, but I still have that love for learning.  There’s no greater gift I can give him than the time we’ve had.

As far as my oldest son Moose, we’ve been flexschooling Moose this year.  He leaves his autism program early each day, so we have time to work on life skills.  Simple things like shopping off a list at a grocery store, when it’s not a sensory overloaded hellhole.  A visit to a Nature Center.  Time to learn to ride a bike! All of the things we didn’t have time for when ABA therapy dominated our lives a year ago.

autism and life skills

A 7 hour school day is exhausting for him, so the early dismissal makes for a happy Moose.  The direction of Moose’s school days is in limbo now.  He is a “learner on the move” and the traditional school paradigm, isn’t really working for him.  Kinesthetic and tactile learners do not fair well in a visual/auditory classroom environment.  Most autism classrooms are heavily invested in PECS, and after 5 years of beating working with PECS visuals, I think a change is due.

He turned 7 this past October, and his language has flatlined.  Anxiety and severe eczema have dominated this entire semester. He isn’t reading, or doing the basic academic goals lined out in his IEP without maximum assistance.  I will never give up hope, but rather, we will leave no “therapy” or “avenue” unturned.

The only thing we really haven’t tried at this point, is NOT outsourcing a thing.  School is outsourcing, homeschool is the DIY hands-on approach that could possibly elevate Moose to the next level.

I’ve been trying out some Montessori methodology with him and have had great results.  I was told he would only whole word read, and NOT learn phonics, but he is learning the sounds and letter formation through Montessori sandpaper letters!  Sure, it will take more time and energy, but we will get there.

montessori homeschool

So, homeschool, seems the only viable option for him as well.  The Chicago Public School system has between 13-16 kids in their autism programs, which, is WAY to big for him.  He needs as small as possible.

Here at the homeschool, class size of 2!  Plus, one obnoxious school mascot.

With question, he will be home with Monkey and me this fall, if not sooner, depending on a variety of circumstances.  If anything, I need some time to plan and prep.  I’m looking into some additional training this March on Orton-Gillingham methodology.

I never set out to be a “special needs” teacher.  I remember when I was subbing for a bit, after Moose was born, I was placed often in sped classrooms. It never dawned on me that I would be thrown head first into this world of special needs on the other side of the desk.  I remember when I was a classroom teacher, feeling awful, that the IEP process was such a colossal pain.  I remember it took an ENTIRE school year to obtain services for one of my lowest students.  The system is broken.  It truly is.

It’s so different advocating for your own kids. These aren’t just students who will move on next year to a teacher down the hall.  These children are my heart, my life.  I’ve grown tired.  Tired of fighting the systems and powers that be.  Tired of the revolving doors of therapies and opinions.   The David and Goliath story reigns true. But sometimes, David knows best, instead of putting your energy in the fight, you put your energy into the two reasons you fight instead.

homeschooling and autism

 

 

 

 

 

 

 

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a prayer answered: autism and core words…our next step

Last night,  I asked for a sign.  I don’t ask for much from the man upstairs.  But I did.  I asked loud and hard.  Show me the way, and I will do the work.  He must have been listening, because,  today, well, today was an interesting day, really.

In the morning, I had a conversation with Moose’s speech therapist, that felt undercooked.  The past year, just feels like treading water.  She spoke of PECS systems and communication strips.  I stood firm that we need to move past that.  Time is passing, and we are grateful for every word, but something needs to give.  This language plateau that Moose has been on for the past two years isn’t augmented by strips of velcro and piles of noun cards. His phrasing of choice is I WANT.  For everything.  All the time.

I got off the phone a bit deflated but charged.  I turned to a forum at work where I wrote a question regarding ideas for teaching kids with autism to read.  Many people responded and I reread the thread.  Then I shot an email off to one the teachers who responded in kind.  Susan promptly emailed back with TONS of information and resources.  She has been working with kids on the spectrum for 40+ years.  That conversation, I know, will be something I look back on as a game changer.

Susan, the SLP who also sells on Teachers Pay Teachers like I do,  is now  my guardian angel. She led me to research this “core words” method.

Sure, this method may look like some communication cards to you, but this is the key.  No lost cards. Any parents who has ever used a clunky PECS book knows my pain.  No focus on random common nouns.  All the communication with a focus on the CORE WORDS we use on one low-tech page.  I’m warming my laminator now after I hit publish! This is  sommunication that represents how we really talk.

We can now extend Moose’s sentences by merely pointing and repeating! It’s a prayer answered.  I want to wake him now to try this.

(Image from another SLP blog SYNCUPAUTISM.blogspot.com)

Moose is already familiar with the pictures from the Boardmaker cards, and this is the most brilliant use of language I have seen in my 5 years in the autism trenches.  At this point, it all feels like “been there, done that, have the tee-shirt”.  But this method feels like I’ve won the lottery.

Take your fancy clothes and cars, people.  There’s one thing I want in life: a real conversation with my son.

Look at the phrases possible: Let’s go there! I want more! I all done! You do that!  You get that.  You eat.  I want help.

I am going to cry now, seriously.  It feels like Christmas morning!

This just goes to show.  Never stop learning.  Asking questions.  Keep digging.  Keep asking questions.  Don’t be afraid to question professionals.  When you think you are done digging, go grab some lemonade and dig some more.

It’s our job as autism parents to dig and dig and dig.

To help our children find their voices.

Nicolette

Boardmakers images are protected by copyright law. So be good.

The Picture Communication Symbols ©1981–2011 by Mayer-Johnson LLC. All Rights Reserved Worldwide. Used with permission.
Boardmaker® is a trademark of Mayer-Johnson LLC.

 

 

 

 

 

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a tale of two brothers and a mom who may have cried while washing dishes tonight

autism and play momnivores-dilemma.com

So, yeah.  Something profound happened this evening.

I mean, far more profound than that time Moose walked in the grocery store without tantrums or a fight.  Far more profound than his first sentence.

Let me back up first.

So, this kid goes and graduates kindergarten this afternoon.  To celebrate far away from the hellish sensory overload “reception” smashed with 500 other kindergarten families in the gym (no thanks)-we took Moose to his favorite place on earth: the grocery store: Whole Paycheck.  A treat from his beloved nana if you will.  My mom also spied a kickball on an endcap and of course, had to buy the frog kickball, because that’s what Nana Magic does.  She sprinkles fairy dust and spoils them.  She swoops in when I’m exhausted and bitchy and makes everything perfect.

So, back to this kickball.

It is the catalyst for the good to come.

Had you been on my block this evening, you may have heard me screaming and cheerleading and acting like a wild woman.  Because Moose played tonight.  Without ABA prompts.  Without therapists.

He played catch with me.  With that kickball.  Overhead throwing.  Looking me in the eye.  Laughing and playing catch with his mom.  Then, Monkey, in normal younger brother fashion, gets jealous, and we switch gears to real kickball.  And Moose shows interest.

He kicked the ball back and forth with his brother.  In my front room.  You know.  Just two brothers playing.  They could have broken every damn window and lamp and I would have cared less.

It was the most magical thing I have ever seen.

Ever.  In the history of ever.

So, armed with new hope and reenergized with possibility, we are graduating from more than just kindergarten this evening.

autism and play momnivores-dilemma.com

 

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Twas’ the night before kindergarten graduation…

homeschool, IEPs, and autism

So, tomorrow. The end of an era.  Our little Moose moves on from the cushioned world of early childhood…to the big leagues.

We still have a long road ahead.  This year academics has taken a backseat to plain ol’ life skills, and despite a remarkable teacher and a overall incredible school year- this mom is at a crossroads. Where do we go from here?  New therapy?  Homeschool?  Stick it out one more year in the great program he is in?

Which is WHY it has been so quiet around these parts lately.  I’m just on a plateau-looking for  a sign, praying for grace and energy.  A whole lot of praying.

homeschool, IEPs, and autism

I have been thinking a great deal about education. And what that really means for my two sons who are both markedly different square pegs in a round-hole school system.  Well, not Monkey.  He’s home for “school” next year.  But Moose?  Part of my heart wishes to bring him home, but he is with a teacher who has a heart of gold and I don’t know yet if I can do both boys with such profound and different needs.  I just don’t know.  Only time will tell.  Moose is in a great spot “for school” while Monkey would be thrown in a shark tank with a fuzzy curriculum and 30 kids in a class.  That was a no brainer.

But first, the sad news. Moose didn’t meet his IEP goals this year.  At all. Reading? Not doing it.  Math.  We still are beating our heads over 1:1 correspondence.  But at this point, despite that I know what my son is capable of, we haven’t quite been able to reach him yet.  At his IEP this past week, I questioned the methodology.  The case manager said that was the first time a parent ever did that in a meeting.

I suggested a few things I’ve noticed here at home.  He loves predictable picture books and has some favorites committed to memory. He can memorize book phrases.  He is drawn to music.  It’s like a small crack of light at the end of the dark hallway.

During my years teaching and private tutoring, I had a lot of tough kids.  Nothing I saw in the classroom or in my tutoring business prepared me to be a mother of kids with special needs.  Nothing.  I’ve never had a kid as a “non-responder”.  Which is kind of what Moose did this year.

I really do believe God has given me these boys to crack the code of special needs. I believe the mad skills I’ve earned in my business at The Classroom Creative will serve the needs of my highly visual sons. He does give us the paths we need in life.  I believe that.  I need the resurrect the energy I had as a teacher in my 20s, and give it to my sons.

My son will read. He will write.  He will do math.  He will overcome all of this.

This summer,  plan to make up for lost time and failed IEP goals.  We start summer homeschool 8:00 sharp on Monday morning.  The coffee pot will be brewing.
Thankfully,
Nicolette

 

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