Book Review: The Reason I Jump

The Reason I Jump: The Inner Voice of a 13 year old boy with Autism by Naoki Higashida is a must read for every parent, grandparent, teacher, doctor, and therapist that interacts with autistic individuals.  I cannot state this more clearly.  Acquire a copy as soon as you can and prepare to be enlightened.

Higashida’s experience is presented in a series of questions and answers which are interspersed with botanical illustrations and short stories by the author.  The emotional depths conveyed through his writing, the insights into his fragile human heart, and his awareness of how “normal” people relate to him as nothing more than “special needs” will change any preconceived notions you had about the autistic.  That they don’t feel.  That they are unaware of those around them.  That they are stupid. Prepare for your heart to break open as he shares the truth of his experience.  Writing in a manner that no “non-verbal” person should be able to, (especially considering he has to point to an image of a typewriter as someone else watches him and transcribes the letters he indicates), the imagery and metaphors Higashida conjured are poetic.  Proof indeed that you can accomplish anything you put your heart into.

Time Flies, Artist in Residence Edition : 5/23/2019

Nora has always exhibited a talent for the arts, and since I spent the first three years of her life working towards my art history M.A., it was something that I strongly encouraged.  It was almost impossible to choose a "then" image for today's post because there were so many great artworks, but I settled on this self-portrait/eco friendly message.  (I must have been saying something to the effect of "Don't buy me a fancy box of chocolate because the box sits in the landfill for a million years before decomposing".

Then:  Valintimes Day Self-Portrait, 2012.  Blue dry erase marker on white board.

Now:  Pop! Inspired Self-Portrait, 2019.  Marker on paper, construction paper, adhesive squares.

Talent.  Pure Talent!!!!

Here it is on display at the Fine Arts Awards Banquet held at her school.  Nora's portrait of Abby Mae is behind her, and the tree image to her left is also by Nora.

I love all of these works so much I am planning on hanging them in the house.  She, being a teenager, is mortified.

Two steps forward, one step back

Even at that rate we are making progress, although it doesn't feel like it.

Gardening is still at the top of the "small victories" list, but we've had some setbacks this week that have me a bit stressed out. 

Although I haven't finished reading The Conscious Parent's Guide to Executive Functioning Disorder by Rebecca Branstetter it makes its really clear that kids on the spectrum, with ADHD, and/or sensory kids need organization in every aspect of their life. 

Currently our home is anything but organized.  God knows I love a clean house, with well-appointed art and decor.  Three times a year (once when Minnesota cousins Austin and Heather come for a game weekend, once for Thanksgiving dinner, and once for Emily's birthday bash) I clean the house so well that Better Homes and Gardens could come and do a photo shoot of what's new in the Scandinavian-American hygge look.  And upstairs looks like a Star Wars museum in Ryan's office.  Its social-media perfect.

And then there's the other 49 weeks of the year where it vacillates between "could use a tidy-up" and midden heap.

We are currently at full on midden-heap.  SOS.  Help.

What this also means is that when I say things to my daughters like, "could you please clean your room?"  or "Fold your laundry instead of leaving it in the basket for the love of God" I'm asking them to do work that I myself haven't made time to do.

Well, since I had to leave my second job, I decided the first order of business is to clean up the house.  That would be necessary before organizing it, labeling stuff, and teaching Emily how to function in a world that doesn't necessarily march to the same drummer she does.  Picture Momma Ivy with a garbage bag in one hand and the vacuum cleaner in the other.  Time to make so much progress!

LOLOLOLOLOLOL.

That's what the kids say these days when you're being ridiculous.

"Emily let's clean your room!"

"NOOOOOO."

"I'll help you.  It won't be be bad."

"NOOOOOOO."

"Why not?  I said I'd help."

"Because you clean too perfect.  I like my room just like it is."

Oh.  Ouch?  From the mouth of babes?

So I worked on my bedroom instead.  I thought, "I'll inspire her to clean!"  I should post before and after photos, but the before is so embarrassingly real that I don't even know if I can handle being that honest with you all.  Maybe I will in the future?  I mean my place is a mess. 

When I was done with my room (and it took several days friends. It was where laundry and art supplies went to die) I pressed the issue with Emily again.  Because OBVIOUSLY clean is better than a mess.  I know it.  Marie Kondo knows it.  And the book says so. 

And that was when Emily had another complete and total melt-down. 

She cried.  She screamed.  She was unable to focus on anything else including her online schoolwork.  I felt  terrible.  I did what I always do when I'm at a loss.  I found a book on how to help ADHD kids get organized.

It said "try telepathy."

No, really.  I'm not kidding.  Beware of some of the titles on Hoopla fellow library users.

Telepathy?  What the actual ****?

After literally laughing out loud, I made an appointment with the neurologist.  While this didn't have anything to do with seizures, I swear there is something misfiring in her brain.

So we made the trip to the hospital and decided to add a second medicine to Emily's routine.  It helps with anxiety and ADHD.  I had been avoiding this path since her epilepsy diagnosis last June, but the B6 isn't enough to combat the anxiety, and not addressing the ADHD properly hasn't made it get better.  Clearly I need to do more at home, but at this point the mere mention of cleaning is making her hide in the dark.

We are also awaiting approval from the insurance company to start group therapy.  We think Emily would benefit from seeing that there are other people her age with the same issues, and that at the end of the day that's ok. 

Medicine.  Therapy.  Two more steps forward.

Planting seeds

“Acceptance makes an incredible fertile soil for the seeds of change.”
― Steve Maraboli 

Its been a week and I still don't have a plan.  As you can tell from the last post, this fact had my knickers in a twist.  But you know what?  Its ok.  We are ok.  We have a garden, and can anything really be wrong when you're under the big blue sky, running your fingers through the soil? 

No.  Especially not when your child turns to you and says, "I love this!"  For the first time I realized-understood-accepted that not all classrooms have walls and chalkboards, or technology for that matter.  I was saying it before, yes, but now this idea has a place in my heart. It just feels right.  We've made friends with the worms and the people who are in nearby plots, we're practicing patience because seeds don't sprout overnight, and I'm learning to allow Emily to make her own decisions (even when those decisions aren't the ones I'd make).  Who is the teacher and who is the student?

Since I forgot to post some pics last Thursday, I thought I'd share some images from our garden so far.

 April 26th:

Welcome to the Garden Emily

We are actually F-3 and F-4.  Here is the before.

Emily leveling the compost we added to our bed.

We had our first peek at our plots on the 26th, and immediately we both wanted to stay and fill them up with compost.  It was hard to resist staying outdoors after the long winter!  There was still a chill in the air.  We arrived in winter coats and didn't take them off until after hauling several wheelbarrows of wet compost to the beds.  No one else was around, and the majority of the beds haven't been touched as of yet.  Officially gardening season here starts May 1st, but folks are allowed to prep the beds beforehand.  This was also a good opportunity for me to observe Emily's strengths and weaknesses in this setting.  She did get distracted easily (oh look!  A butterfly!) but she did not shun any of the physical work.

May 3rd:

Planting our cool weather crops in F3

With the garden officially open, we decided to put in our cool weather seeds.  Emily helped plant peas and swiss chard.  She also wanted to plant the watermelon seeds and zucchini.  Even though they aren't cool weather crops, I figured why not.  Its a good science experiment.  Its been cold and wet.  She can see what happens to help her decide what to plant and when next year.


We also had a lesson in recycling.  All of the decorative borders that our dog bent up have been repurposed as pea and bean trellises. 

We did think about where and how to plant the warm weather tomatoes, peppers, and eggplant.  Sadly, someone nearby had already put in their tomatoes which suffered under last weeks unexpected snowfall.  Another good lesson, although at the cost of their crop. 

May 10th:  

Our first seed sprouted...along with a giant weed

Meet Thorinson the Gnome, who greets all approaching our plot.

Peanut and Cornflake the Chipmunks...the only chipmunks welcome in the garden.

Emily really thought we needed to add cauliflower to the garden, and I wanted to get in a few spinach and lettuce seeds to put in behind the peas.  So we headed to the store and came out with a few new friends for the garden.  We did some more weeding, and learned a lesson about how not to use the water pumps.  Emily was soaked to the bone so we ended up having to go home early.  Whoops.

Is this all that we're going to do for the gardening portion of summer homeschool?  Maybe.  Maybe not.  I'd like to start a journal with what works and what doesn't.  But I don't know what format that will take because there are a million different lessons to focus on...science hypotheses!  Math growth graphs!  Essays on the joys of the outdoors.  Drawing the different plants.   As soon as we have something tangible, I'll be sure to share.  But for now I'll revel in this small success.

Plan B

Art by Steve Johnson, who sells his work at https://unsplash.com/

Plan A:  Momma Ivy spends the entire summer reading books, curriculum reviews, and websites dealing with homeschool, PDD-NOS, ADHD, and Educational Disabilities.   Plan accordingly.  Purchase shiny new supplies.  Observe Emily over the summer to determine current strengths and areas for improvement.  Find therapist. Write witty observations and publish online.

Plan B:  Pull Emily out of school at 6:48 am on a random Thursday because she's hiding under her blankets screaming at the top of her lungs.

"Emily, why aren't you dressed?  The bus is coming in 10 minutes!"

"AUGHHHHHHHHHH!"

"Emily what is wrong?  Why are you screaming?"

"Because I'm scared you're going to punch me in the face."

(So I'm thinking, Where the hell did that come from?  Whaaaaa????) But I say, "Honey, I have never punched you, I would never punch you, and no one should ever punch you."

"But that's how I feel.  I deserve to get punched in the face."

Plan B it is.  I can't send her to school so she can find someone who is willing to punch her.  

Today its like this...

My plan for this morning was to ask the kids to get up at 6:00 am, to sternly request that they pry themselves from the mattress at 6:10 am, and then start hollering at 6:15 if they were still large lumps under a pile of blankets.  This is the routine, as unpleasant as it sounds, but that's what seems to work.

And it did, for Nora.

Emily had other plans. 

She protested that she was tired, that she needed more sleep.  I sent her off to bed at 8:30 last night, how could that possibly be?  I asked her to explain. 

"I stayed up," she said.

"Why would you do that?" I asked, now thoroughly annoyed, since my coffee was going cold downstairs.

"Because I knew I'd be miserable!" she yelled.

Oh crap.  That's not good.  But I told her to get up anyways, that she had to catch the bus.  She grumbled and back-talked.  I gave her a muffin to eat.  She didn't get herself anything to drink.  "Don't you want some water?" I asked.  "Then you can take your pills."

"I don't deserve water.  I'm just going to go thirsty."

This has been a common refrain this school year, but usually I can get her to eat or drink something if I offer it along with some commentary on how that isn't true.  It was especially hard to hear it this morning though.  Its the first time she's said she doesn't deserve food/water/clothing since we got back from Disney.  My blood starting running as cold as the coffee, now forgotten in the mug.

But I thought we'd get through it.  I thought we'd get her on the bus.  It only got worse.  When she started shrieking non-verbal banshee sounds, I just walked down to my room and sat on the bed.  Ryan was there, looking at me with eyes like saucers.

"What are we going to do?" he asked.

I pulled out my phone.  "Find a psychologist that can see her today.  I'm not sending her to school."

And I didn't.  She is working on a story in her room, planning the ending so it doesn't go "on and on forever."  As soon as I said she could stay home, the screaming and the tears stopped.

Did I do the right thing?  I don't know.

On the one hand, I just read an article in the Tech Times that said a lot of the kids today with anxiety suffer due to the way in which their parents handle the anxiety.  Without meaning to, the act of comforting or accommodating reinforces the idea that the child is helpless, and that the only one that can make it right is the parent.  Is that what I did this morning?  Make her feel that she can't handle school on her own?

On the other hand, I know that her brain is different, that anxiety and depression run in the family, and that the side effect of the epilepsy medicine increases  her anxiety and depression.  I can't send her off on the bus, not today, when she said to me after she calmed down, " I don't have any friends at school, and today is a day I just need to know I have someone.  A lot of the time I feel worthless, like you should just throw me out with the trash."  And later, while I was eating breakfast, she gave me a hug and said, "I'm glad I'm here with someone who cares about me."

Sometimes Emily says things that don't seem like they came from the mouth of a child.  I know a lot of adults that aren't that in touch with their mental state.

Ten more minutes until I can start calling around, seeing if I can find someone who can take a new patient and our insurance.  (Don't get me started on that).  Ten more minutes until the school calls, asking where she is.  I'll tell them she's having a bad mental health day, and the secretary in the office won't know what to say.  Ten more minutes for me to wonder if I should even send her back at all, or if I should just clean out her locker and declare the school year over.  I know this post is rather bleak, but this is today, and its like this.  I'm not here on social media to present a curated view of perfect, middle class Americana.  Parenting is messy and complicated.  Some days are wonderful, and you have the photos to prove it.  The days that aren't picture perfect are just as important though, and I'll be the first to tell you our family has our share of both.

Time Flies: 4/25/2019

Still feeling the Disney Vibe...it was such a wonderful trip!  So here's a few more throwbacks, this time from our first trip and a few weeks. ago.

May 2013:  The Tree of Life at the Animal Kingdom (pre-photo pass.  This means that we only have one or two family pics from this vacation since one of the adults had to man the camera).

Nora, Emily, and I at the Tree of Life at the heart of the Animal Kingdom.

April 2019:   On the main drag heading towards the Tree of Life first thing in the morning.  Despite the fact its early spring, this was the hottest, sunniest day of the week we spent in Orlando.  Even at 9:30 the sun was blazing!

Ryan, Nora, Emily, and I about to enjoy the day at the Animal Kingdom.  Note Nora is rocking great sunglasses in both pics.