The Oils Are Working, The Oils Are Working!

Okay, okay…two weeks is enough of a vacation.  It’s been nice though, I’m not going to lie.  My biggest concern to begin writing?  What do I do for a title?!?!?  I no longer have to number the title…

Today’s title came easily…the oils are working.

Remember Day #348 – Alternatives?  If not, let me  refresh your memory.

My good friend, Lisa, sells Essential Oils.  She reads the blog often and reached out to me…she thought that maybe, just maybe, her oils could help Tucker.

The thing about having a child on the spectrum is this – you know some things work, and other don’t.  We don’t often know why. To be very honest, most fellow moms don’t really give a _ _ _ _ (fill in your own favorite four-letter word).

So we got together and talked about some of the larger struggles we had been having (throughout life).  She took that information and concocted some recipes to help us out.

She put together four sample oils…and sent them to us.

Focus
Calm
Sleep
Poop

Yes, she labeled them as such.  When I received the package I laughed hysterically.  Look at me and my poop oil!!!

11952730_10154196042327796_1181382944741434724_o

The oils were in little bottles that had rollers on the top (think miniature deodorant).  I was skeptical – but figured it couldn’t hurt.  This has kind of become my mantra in life…what’s the worst that could happen?

So, the first night I rubbed the sleep oil on his wrists (because I hadn’t talked to Lisa about where to actually put the oil).  He told me he slept well.

Then I got a hold of her and she told me to put the oil behind his ear.  Okay.  So, that night I put the oil behind one ear.  He woke up and said, “Mom, that is the best I think I’ve ever slept.”  I didn’t think he was having problems sleeping, though.  That’s when he said, “No, I get to sleep, but I wake up a lot and go back to sleep.”  This tells me he’s having difficulty getting into (and more importantly) staying in REM sleep.  This is the sleep cycle that sort of heals and resets your bran.

The next night?  “Mom, why don’t you put that oil behind both of my ears.  It smells like Sprite.  I love it.”

Tucker describes it this way, “She puts the oil behind my ears.  I take a big whiff. I lay my head down on my pillow.  I close my eyes.  Then, it’s morning.”

So…that’s what we’ve been doing since then, until late last week.  We ran out of the sampler.  We’re now on emergency order.

After the success with the sleep oil I decided the poop oil was worth a try.  Reread Day #97 – The Trouble With Going for a refresher on our BM issues.  I didn’t want to try this on a school day just in case it worked too well.  😉  So, we put the oil on his feet before bedtime.  On the arch and around the bottom of his heel.  No, I didn’t think it would work – at the same time I couldn’t help thinking about my mom who would put Vick’s on my feet and then cover them with socks when I had a cold.  Somehow, miraculously, I would wake up feeling better.  So…poop oil on the feet it is.

The next day he went.  It was normal.  It didn’t hurt.  Not to go into too much detail but he said, “Is that how it’s supposed to be? It didn’t take too long.  It didn’t hurt.” My eyes welled up with tears…who knew regular pooping could make a mom cry?

Let’s be honest…just about everything can make me cry.

So the next week I took it a step further, I put the focus oil all the way down his spine (soon enough I’m going to need a darn stepladder to get to the top).  That Friday I received a message from his math teacher, “From my perspective Tucker’s had a couple of really good days. He’s engaged! Yesterday he was working with his partner and contributing a lot.”  The compliment was unsolicited.  Coincidence?  Maybe…but I’m not messing with it.

I didn’t think the oils would work, honestly I didn’t.

When my husband and I were talking about which oils to purchase he wanted to make sure I asked Lisa for oils that would suppress his appetite and cure my sassy streak (turns out both exist).  All of the children and I began to research the oils online – turns out there is a pack of oils called the ‘Twelve Oils of Ancient Scripture.’  One of those happens to be the oil that was rubbed on Jesus’ feet to which my bonus daughter said, ‘Dad, you have to buy that one. Seriously – you don’t want to be like Judas and deny Jesus’ foot rubbing oil.’

Point made.

While ordering the oils Lisa and I joked about this black magic.  Her neighbor calls her a witch doctor.  My husband is now calling me a Voodoo Goddess.  Whatever you call us – I’ll shrug it off.  This stuff is working, at least for now.

If you want to try out poop, focus, calm, or sleep oils send my friend Lisa an email:  lisakayrunkel@gmail.com.  She’ll be very happy to help you!

Advertisements

Day #366 – Tucker’s Turn

I gave Tucker several opportunities to write along the way – he, of course, declined.

I finally was able to get him to promise he would write for today…alas, no luck.

He did, however, want to say something…so we thought about video, we thought about me transposing his ideas, we thought about audio.  Finally  – we settled on an interview.

So, here are my questions (in bold) and his answers (in italics). This is a direct transcription….

Tucker, so everyday people have read the blog that’s about you and our family.  I’ve written every day for 365 days.  Tell me what you would want people to know about you.
I have no idea.  What do people want to know about me?  What’s important to me is that I get good grades in school, I get enough sleep, I eat healthy.  I like to do sports like football and basketball and for a hobby I like to play video games. My favorite teams are the Minnesota Vikings for NFL, the Minnesota Twins for baseball, and the Minnesota Wild for hockey.  Pretty much I’m a Minnesota kid. I like most sports from Minnesota.

Tell me who is your favorite member of our family?
(laughing)

Your mother?
Why are you asking me this?  You know I love all you guys.  I love all of you.

Tell me what you think it means to have autism.
It just means that your brain doesn’t work the right way. It doesn’t necessarily mean that you will have to go work somewhere where you know other normal people usually don’t work or go.  It doesn’t mean you’ll go there. Cause people with autism can do great things.

Yes they can.  Tell me with your autism, what do you think autism makes you really good at?
For one thing I have a really good memory.  If you ask me anything about NFL football, especially the Vikings, I will know the answer.

That is right.  Do you know other people who have autism?
I know a couple.

Are they the same as you or different?
Different.  My autism isn’t as bad as other people.  There are some people who go to Goodwill and work for the rest of their lives because they can’t do regular jobs because of how they think. 

If you have friends that have autism, how are they different from you?
Well, sometimes they can’t control their hands. Like they have to have their hands on something.  I guess that’s kind of like me because I can never stop moving.  It’s just a thing, like if you ask me to sit still I won’t.  I can’t.

We know that sometimes you struggle with eye contact.  Right now you’re giving it to me because I’m talking about it.  Okay, you can stop staring at me.  You are freaking me out.  
Sometimes I don’t think it’s necessary.  During football and class I try really hard to look at my coach or teacher, but then I start spacing out like I sometimes do, so I really have to concentrate. I try to keep my eyes on them, but if it’s just my mother asking me what I want for supper it’s not really that important so I don’t waste my energy.  I only have so much I can take so I try to do it when it’s most important.

You sometimes have to go to a special classroom.
Yes.

What do you think about that?
I think I just want to complete my goals and leave it.

There are other kids who stay in that classroom all day long.  How are you different?
Well they can’t handle other kids and loud noises.  They just need to be in a peaceful room by themselves spending one on one time with their teacher so they can get their proper learning.  I used to be more like that but with everyone’s help I’ve learned how to deal with the regular classroom.

Do you sometime think you can understand where those kids are coming from?  You know…kind of like a translator?
Yes.  For sure.  Well..sometimes.  Yes.  I’m not the best – but I can understand them.  I just know when I walk in the room I could tell someone was going to have a tantrum.

So, how could you tell?
There is some frustration going on between the one on one.  I knew that so I knew it was going to turn out bad.

Yes.  Your teachers and coaches all know that you have autism.  How do you feel about that?  Do you think they treat you differently or the same as the other students?
I feel like they treat me the same.  I feel like they give me a chance and everybody else a chance.  I like that a lot.  

Tell me what you would like people to know about autism.  Whether its yours or someone else’s? What would you like people to know and keep in mind when they meet someone who has autism?
I would like to not be too overwhelming.  Just start with a few simple questions, make sure there isn’t too much like, “Hey what’s your name” and all of that straight away.  You gotta be like,  “Hi.  How are you?” then maybe someone wants to tell you their name and then you can keep going for a little bit.  Then you’ll ask a few questions and that’s all.  Just don’t overwhelm them straight away.

What would you like people to think about autism?
It’s something that happens to your kid and if it does happen then like it’s okay.

Tucker, I told you about you having autism in 1st grade.  Do you remember that?
No.

Okay.  Do you think that its smart for parents to tell their children or do you think I shouldn’t have told you?
I think it’s smart because then they know they have a reason that they aren’t doing well in school.  Then they just try way harder which is good, but at some point they will overwhelm their brain with all of the things they are trying to figure out.  Then they are just going to feel depression and that’s what would happen.  Knowing helps me know why I sometimes struggle.  It’s not me, it’s autism.  Which is me….well…you know what I’m trying to say.

Yes I do.  Tucker, are you happy?
Well, yeah.  I mean I have some mini Doritos right here.

Estelle, do you have any questions?
Estelle:  Yeah, like two.

So, Tucker.  When mom is talking to one of her friends in the store what do you do?
Wait.  But after five minutes I tell her it’s time. Let’s go.  Let’s go. C’mon on! 

Does it every frustrate you when she doesn’t come?
(Laughter)
Well it depends.  If she’s talking about something that doesn’t even matter – which it usually does, but it does get annoying and repetitive.  You know Estelle – she’s always talking to someone. Like you can count on her talking to Jill at the W, it’s just a given.

Estelle:  What would you do if you could change one thing about life?
I would make it so I would never lose anything again.

Estelle:  That is pretty good actually.  

Tucker, do you have any last words for people who have read my blog and learned your story?
Thanks for reading my mother’s story about me.  That’s all.

I love you Tucker.
I love you Mom.

There you have it.  He would prefer to never lose anything again.  I know one thing he won’t lose…my ever-enduring love and admiration.  Thank you, Tucker. Thank you for letting me share you story.  You’re awesome, dude.

If you are still interested in other blogs you can find them classified by topic (updated today) on this page:  Day #327 – Indexing.

Well…that’s all for now.  My husband is taking me on a celebratory weekend to Chicago, and I don’t have to take my computer.  We’ll be watching The Zac Brown Band perform at Wrigley field tonight.  In honor of that…I’m leaving you with one song that I play often when the world of autism just feels like too much.

I often need to remember to quiet our minds and soak it all in .  It’s a game we can’t win so we might as well enjoy the ride…because we’ll end up right where we need to be.

Why NOT us?

I hear the waves
Sun beatin’ down on my shoulders
It’s a near-perfect day
Wishin’ I wouldn’t get any older
They say that it’s gone ‘fore you know it now

Quiet your mind
Soak it all in
It’s a game you can’t win
Enjoy the ride

I feel the change
Goin’ on all around me
It’s strange
How I’m taken and guided
Where I end up right I’m needed to be

Quiet your mind
Soak it all in
It’s a game you can’t win
Enjoy the ride

At the end of the water
A red sun is risin’
And the stars are all goin’ away
And if you’re too busy talkin’
You’re not busy listenin’
To hear what the land has to say

Quiet your mind

I hear the waves
Sun beatin’ down on my shoulders
It’s a near-perfect day
Wishin’ I wouldn’t get any older
They say that it’s gone ‘fore you know it and
Soak it all in
It’s a game you can’t win
Enjoy the rides

Signing off for now…’see’ you next week.

Day #365 – Thank YOU

Well…it’s here.

Tucker is finishing out the blog tomorrow, so today is my last ‘scheduled’ day to write.

My last post after…

901 pages (Word Document)
270,869 words

I’ve been called windy before – but that’s a new record for me.

I’m kidding.  This isn’t my last post – I’m going to keep writing.  I ‘heard’ all of you and your plea.  I still have 12 pages of notes and that doesn’t include the day to day, spirit-induced topics.  I’m going to take a week off – unless, of course, something major happens.  After that I’ll probably write 1-2 times per week.

Today?  I thank all of you.  All of you who read or have read this blog at any point in the past year.  Seriously, I cannot thank you enough for being part of our family.  Your love, support, and compassion for us has, at times, been overwhelming.  I have been brought to tears AND laughter by your comments and private messages.  I have made new, quite incredible friends – for that, I will be forever grateful.

It has been an honor and privilege to share our story, Tucker’s story.  I remember the first day I had 100 readers – I told my husband that we needed to celebrate.  His response?  “Babe, this is just the beginning…you have a great story to tell and a great ability to tell that story.”  It seems he was right…again.

I remember the day I had 10 followers.  I remember saying to him – “Why do these 10 people want to read this story?  That’s nuts.”

Every single time I get a notification that another person is following, I sort of squint and wonder.  Thank you for the boost in my self-esteem.

Thank you for following on Twitter or Facebook or (new to me) Pinterest.  I tried to stay off Pinterest – because I knew my life would get sucked into projects (more than I already am) but found this a great outlet to organize posts and share ideas.

I have cried through posts.
I have laughed through posts.
I have nodded my head through posts.
I have had intense frustration through posts.
I have cried and laughed, nodded my head and had intense frustrations through posts.

I hope you have too.

I have stared at blank screens with a blinking cursor, cursing (well…not really-but it was a good play on words) this insane idea of mine.  I have had the words come out so easily that I have written 1,200 words in 15 minutes.  I have been so excited to post that I forgot to spell, grammar, and think-check my writing.  I have been so worried about not offending others that I came back to a post and refined 15 times in a single day.

I have written in parking lots, lying in bed, sitting at our table, computer on my belly lying on the floor, on my front porch, sitting at our patio set while sipping a cool summer drink, and sprawled out on a couch.   I have written at half-times and forced my family to pause a movie because I have a ‘stroke of genius.’   I have written at my parent’s house and my in-law’s home.

I have written while lacking motivation and sleep.  I have left parties early to write and risen before the sun to write.  I have flopped face down in my bed because I was stuck.

I once had the opportunity to meet Robert James Waller (author of The Bridges of Madison County) – not only meet him, but actually sit and talk with him. He told me there is really no such thing as writer’s block.  If I was having troubles writing and telling a story then I did it to myself – I backed myself into a corner.  I went to a ‘place’ that I wasn’t intending to go.  There were moments that I repeated this to myself…therefore, I have deleted full posts and have 23 abandoned, half-written posts.

beautiful journalist looks typewriter

While I have done all of this – I have never lacked for story.   A story that is so important to tell.  A story, which hopefully…

brought hope
brought understanding
brought compassion
brought knowledge
brought laughter
brought heartache
brought empathy.

Thank you for being audience to our story and for being a part of my unforgettable life-long story.

Now – who knows a publisher that wants this content? 😉

Day #364 – How

It’s a question I’ve been asked often in the past 363 days.

How?  How do you know what the ‘problem’ is?  How do you get him back to center?  How do you know what’s wrong in his world?  How do you help him?

My husband once said to my mother (about me), “Loving her is the easiest thing I do every day.  She’s easy to love…just pay attention.”  I sense a collective ‘awwwww.’

It’s easy to figure Tucker out…just pay attention.

If he’s struggling in a situation (or place) I will often go to that place and

close my eyes…pause…and listen.  That tells me what sounds he may be hearing
close my eyes…pause…and inhale deeply.  That tells me what smells he may be taking in.
close my eyes…pause…and feel.  That tells me about the temperature, the wind, the humidity.

If he’s struggling on a given day I will often go outside, look towards the heavens, and

think.  Think about his bedtime.
think.  Think about what he had to eat.
think.  Think about what is happening at school.

If he’s struggling with emotion and his lip is quivering I simply look at him and

touch his hand.  To let him know I’m right there.
tilt my head. To let him know I’m trying to understand.
smile a gentle smile.  To let him know it will be okay and his happy will return.

I don’t just look though – I peer into his eyes.  It’s true his eyes are the window to his world and the road to his soul.  Those eyes speak volumes and when he’s having emotional turmoil it’s about the only time I can actually get to him to look directly at me.

It’s all oddly poetic.

I’ve always been a person who has tried not to judge others.  I mean that – in a ‘no matter what’ form.  I truly believe that most people are doing the best they can at any given moment.  If someone reacts, responds, or hurts me I try to understand where they are coming from…what could have caused the sharp reaction.  I also realize that there are just some nasty people out there – but I think it’s those people who REALLY need the benefit of the doubt.

Even then, those are often the people that teach me the most important lessons.  Tucker teaches me the most during these melt-down moments, so I remind myself to be thankful for the dark times.

I’m far from perfect – but having autism in our lives is making me better.

There is an old Native American proverb that goes something like, “Oh Great Spirit, help me to never judge another until I have walked in his moccasins.”

I often tell my students that the only truly unique thing about them is their story.  Others may have the same color of hair or eyes.  They can be the same height and study the same academic area.  They could have the same occupation and even the same name.  The one thing, though?  The one thing that no one else has?  Their story.

Their story is their own, unique to only them…so I think the answer to ‘How?’  Is simply that.

I’m simply trying to understand Tucker’s story.
I’m trying to wear his moccasins, big as they may be.

never-to-judge-another-QUOTES

Day #363 – The Titanic

It’s one of my favorite descriptors.   Saint Samantha (one of Tucker’s Special Education teachers) taught me about the iceberg.  What is the iceberg?

It’s the idea that we (as neurotypicals) only see the tip of the iceberg of autistic behaviors  – roughly 10%.  Those behaviors are obvious – lack of eye contact, struggling to engage in a back and forth dialogue, sensory and motor difficulties, extreme focus on self-induced topics.

Those things are easy to notice.

What is more difficult to notice is the other 90%…what is below the surface.

She also used the iceberg analogy to describe Tucker’s version of autism.  In about 10% of autistic people (or people with autism) the autism is obvious…the other 90% of folks?  Not quite so obvious (See Day #361 – Severity), so Tucker fits the iceberg philosophy in two ways…

It’s not obvious.
AND
The underlying triggers are MUCH more profound than the obvious behaviors.

Little did I know the analogy from Samantha was actually part of something much larger, the Ziggurat Model, developed by Ruth Aspy and Barry Grosman.  They developed this model to address concerns that typical IEP’s may not always consider.

The Ziggurat Model is based on the idea that we first must ask why.  Why is a person responding in the way they are?  What could be bothering them?  Those issues MUST be identified first. Once they are identified they can be dealt with in a variety of ways.  Maybe we teach coping skills to that child, maybe we work at changing the environment they are in, or maybe…just maybe we work at developing an understanding for those who surround the child.

Once the underlying issues are identified we can begin to teach what it is that we are trying to teach…like multiplication or world geography.

Duh.  That makes a lot of sense.  True learning cannot take place until the child feels cared for and their senses are in balance.

The Ziggurat model is largely about focussing on what CAN be done and utilizing the strengths of the individual to address any struggles that may exist.

In doing more research on this model I learned something new (yet again).  The Ziggurat model truly looks at what a student may struggle with that will stand in the way of them having success in a general education classroom.  They identified something called, “Executive Dysfunction.”

Read on (from http://www.netxv.net/cms/lib/TX07001386/Centricity/Domain/35/Handouts.pdf)…

In individuals with autism there may be abnormalities in the functioning of areas of the brain that are responsible for executive functioning activities.  These include; goal-oriented behavior, organizing assignments and personal belongings, planning the completion of a multi-step project, demonstrating flexibility, maintaining attention, regulating emotions, and controlling impulses.  Students with this trait may have difficult processing information for different sources simultaneously.  Some evidence of this deficit might be:

  • The failure to bring the necessary materials to class
  • The inability to plan for the completion of assignments
  • Difficulty focusing attention on instruction
  • Impulsive actions or comments
  • Inflexibility
  • Rigid responses or rituals
  • The failure to see how doing a task contributes to a larger goal

Wait. What?!?!?!  Do they know Tucker?  Did they write about Tucker?  This reminds me of Day #352 – Self Advocating and Veto Power.  The purpose of Tucker’s IEP is to help him with these characteristics…THIS is the very reason that I have started to refer to his SpEd teacher as his ‘academic coach.’   THIS is the very reason the IEP must stay.

So, Aspy and Grosman’s idea is to deal with underlying difficulties before teaching?  What a remarkable thought.

Once these underlying struggles are addressed the Ziggurat method trains educators to focus on the strengths that individuals with autism often have.  What are Tucker’s strengths?  Understanding and adherence to rules, focus on equality, persistence, honesty, logical thought process, and a love of routine.  The important thing to note here is that these behaviors are not choices, these behaviors are strongly ingrained in the individual.

The Ziggurat method is structured in stepping block form.  It reminds me of Maslow’s hierarchy and has the same idea…learning cannot happen until a child’s basic needs are met – shelter, clothing, food, love.

InterventionZigguratLevels1

  1.  A reaction happens.
  2. Ask the question, “Why did that reaction happen?”
  3. Reinforce that the child is not ‘wrong’ – they were simply reacting to the sensory input.
  4. Fix the environment.
  5. Identify a child’s strengths.
  6. Use those strengths to teach content.

Having the knowledge of what is under the water is the only way to address what is above the water.  It’s the only way to get to real learning.

Don’t be like the Titanic.  It’s easy to see what exists above the water…but it’s more important to pay attention to what’s going on below.

Don’t let the underlying iceberg sink your or your child’s educational ship.

Day #362 – Labor of Love

Labor Day.

A holiday that pays tributes to the American worker.

In the late 1800s, at the height of the Industrial Revolution in the United States, the average American worked 12-hour days and seven-day weeks in order to eke out a basic living. Despite restrictions in some states, children as young as 5 or 6 toiled in mills, factories and mines across the country, earning a fraction of their adult counterparts’ wages. People of all ages, particularly the very poor and recent immigrants, often faced extremely unsafe working conditions, with insufficient access to fresh air, sanitary facilities and breaks. (http://www.history.com/topics/holidays/labor-day)

Can you imagine life without this labor movement?  Young children in factories, unsafe working conditions, and long working days.

While reflecting about Labor Day today I had a new found realization.

My dad told me long ago, “Figure out what it is you love to do the most in the world.  Figure out a way to make money doing it.  Then, you’ll never feel like you work a day in your life.”

A labor of love.

Today, I’m paying thanks to the American worker – but more specifically the faculty at staff at Tucker’s school.

Thank you.

Tucker spent the first four years of his schooling in a different school and it was a wonderful school.  He had amazing teachers and the ONLY thing that really bothered me about moving was leaving this district that had shown so much care and support to Tucker (and Tucker’s family).

So, I visited this new district and the building that he would be attending elementary.  The Principal, Mrs. B. met me to show me around the building.  She assured me there would be no better place for Tucker to attend 4th grade than this building.  Why?  The 4th grade Teacher, Mr. K, has a son on the spectrum.

She was right.  Mr. K. was AMAZING.  He understood Tucker on a level that very few people could.  He was creative and kind.  He was energetic and understanding.  He did everything within his power to help Tucker assimilate to his new school while teaching him coping skills and expanding his cognitive abilities.  Mr. K. and I still have a special relationship and I often go to him when I’m ‘stuck’ in trying to help teachers help Tucker.

His Special Education teacher, Mrs. O, was remarkable.  She helped get him caught up to his peers (there was a slight difference in outcomes for this new school district).  She made him comfortable and was always advocating for what was best for Tucker.  She was warm and welcoming to me.

When Tucker made the move to 5th grade I was full of anxiety.  A new building .  New people who may or may not ‘work’ at getting him.  My anxiety was short-lived as I met Mrs. A. who was outstanding.  She had a background in working with children on the spectrum.  Her love for him was magnificent.  She was always looking for ways to reach him and help him cope.  One of my favorite moments was when she said, “I finally figured it out.  Tucker is Sheldon (from the Big Bang Theory).  Now I watch the show as research to get inside his brain!”

We’ve had exceptional experiences 99% of the time in our beloved school district.  From his teachers to his coaches, from bus drivers to secretaries – these people care on a level that exemplifies what it means to do what you love.

They are, in essence, working their labor of love and I am so thankful for their hard-work, dedication, and general awesomeness…not just for Tucker, but for all of the children in our community.

In the wise words of one of our most beloved teachers, Mr. Ruebel,  “It’s a great day to be a Go-Hawk.”

Indeed it is.  Indeed it is.

images-12

Day #361 – Severity

Someone asked me yesterday, “How severe is Tucker’s autism?”

It’s a valid question, a question I am often asked, and a troubling question all at once.  I think because there are so many factors involved in describing ‘severe autism.’

First, a history lesson (from WebMD).

The word autism has been used for nearly 100 years.  The word is derived from the Greek words ‘autos.’  (Yes, I love etymology…because I’m nerdy like that).  It makes sense because the word means self – and that pretty much describe autism.  Self – something individual, something that each person experiences in different and unique ways.

In the 1940’s United States researchers used the term to describe  children with emotional and social problems, children who are withdrawn from others.  About the same time, Hans Asperger, identified a state of being (I prefer that as opposed to condition) referred to as Asperger’s.

More recently scientists developed the Autism Spectrum Disorder continuum.  The continuum allows for a more fluid movement between Classic Autism, Asperger’s, PDD-NOS, Rett Syndrome, and Childhood Disintegrative Disorder (more in-depth descriptions on Day #279 – Tucker’s Version of Autism).

The question of how severe is complicated because of this spectrum definition, Tucker’s therapies, and my general human philosophy.

The spectrum is awesome and awful all at the same time.  Tucker bounces between PDD-NOS and Asperger’s – but all for different reasons and in different environments.  That’s awesome because we aren’t pigeon-holed into one thing and as we all know autism, itself, is quite fluid. It’s awful because it’s difficult to develop therapies that will definitely work with a given, specific diagnosis.  It’s often a crap shoot – but we’re okay with that.   How ‘severe’ is Tucker’s autism?  I don’t know – it depends on the day and the situation.

How severe is Tucker’s autism?  Do you mean now or then?  With or without all of the therapies?  I have no idea how severe it is.  Now – it doesn’t seem like a huge deal, but is that because we’re accustomed to his needs?  Is it because all of the time spent with SLP’s, OT’s, and PT’s was successful?  I have no idea what his life would be like if we hadn’t spent so much time in the first few years helping him to acclimate, cope, and advocate.

My human philosophy.  To decide how ‘severe’ his autism is I would have to compare him to someone else with autism.  Who should I compare him to and how do I make the decision about which is worse, or better?

Is it better to…
have a child who has limited verbal skills, therefore limited spontaneous conversation.
OR
have Tucker whose verbal skills are fairly neurotypical but watch him struggle with implicit social rules.

Is it better to…
have a child who has limited life skills and know will never leave home.
OR
have Tucker and constantly wonder and worry about what his future will look like.

Is it better to…
have a child that you know will have specialized individualized instruction at school in a separate Special Education classroom.
OR
have a child who is cognitively equal to their peers so is in the General Education population, but knows he is not like the other students.

Is it better to…
have a child who is ‘far enough’ from neurotypical that autism is obvious.
OR
have a child who is ‘close enough’ to neurotypical that autism isn’t obvious.

I dont’ know.  I don’t know how severe Tucker’s autism is nor do I care. So my answer was filled with a lot of ‘um, well, don’t know, depends, not sure, who knows.’

The bottom line?  It just doesn’t matter.  He is who he is and we are madly in love with that boy who is slowly, but surely, becoming a man.

IMG_3198

Day #360 – Milk Jugs

Tucker always has a reason.  ALWAYS.

It is certainly part of the spectrum.  Everything has a reason and it must be logical and make sense.  Part of this is because of the diminished ability to make inferences (see yesterday’s post about ice cream). Part of this is because he doesn’t like any sort of surprise.  Yet another part has to be due to him always having a plan.

As a parent I could never say, ‘Just because.’  That was never good enough and would lead him to an eventual meltdown.  While I believe that made me a better parent, it wasn’t always easy.

“Tucker, you may not have another piece of candy.  Candy is sweet because there is lots of sugar.  Sugar is bad for you in large quantities.  In fact, it can rot your teeth.”

Now he’s very careful about how much sugar he eats.

He has a reason and theory behind nearly everything he does, every step he takes, every decision.  It can be entertaining.  When he was in 4th grade I went to check on him in the shower and noticed there were wet footprints to the garage.  I looked in the garage, no Tucker.  So, I went to the shower.  Sure enough.  There he was – with his bicycle helmet on.

I had to ask.  I just had to.  This is one of those moments that autism rocks.  Yelling or accusing will simply shut him down – but if you are calm and ask the question you will often get an answer that will leave you speechless.

“Tucker, why do you have your bike helmet on in the shower.”

“Well, mom.  I was pretending to play football in here.  I was pretending because someday I will play for the Go-Hawks in the rain and it seems the shower would be the perfect place to practice in the rain.  But, then I slipped.  Then, I thought about how dangerous it was to play football in the shower.  So, I went and got my bike helmet.  That way if i slipped you wouldn’t find me with a cracked open head.”

Uh huh.  Fair enough.  This is just one of many examples of him having a plan.

But then…autism is always full of surprises.  Just when you think you have it figured out…you realize you don’t.

My husband bought a new gallon of milk.  There was still milk in the old jug.  Two jugs in the refrigerator.

milkjugs

Tucker was using the new milk when my husband asked, “Tucker.  What’s up with you using the new milk when the old milk isn’t gone yet?”

He was fully expecting a logical explanation and that would weirdly make sense and provide great conversation fodder.

Tucker responded, “I don’t know, I just drink it.”

There you have it.  Life on the spectrum.  Just when you think you know what you are going to get…bam…life appears as ‘normal’ as can be.

Day #359 – Friday Funny

Jumping off the thank you train today…for a quick Friday funny.

A classic spectrum moment.

On his way home this week my husband decided to bring us all ice cream treats.

His treat?  Ben & Jerry’s Phish Food Ice Cream (yes…the entire pint in one sitting)

phish
Phish Food – chocolate ice cream with gooey marshmallow, caramel swirls, and fudge fish.

Tucker:  Matt, what kind of ice cream do you have there?
Matt:  Phish food – you would love it.  (He gets a big scoop) Here try some.
Tucker:  What’s in it?
Matt:  (Showing him the container).  It says right here.
Tucker:  Chocolate ice cream yum, oooo I love marshmallow, caramel swirls, and WHAT?  Fudge Fish?  Gross. No thanks.

We all pause and look at eat other.

Tucker:  Seriously!  Why would you put fish in ice cream and where do you catch fudge fish?

No he was not kidding.  Yes, he was disturbed.

At which point Matt finds a ‘fudge fish’ in the pint and explains that it’s not actually fish.  That Ben & Jerry’s uses fudge shaped as fish. Then he offers the fish for Tucker to try.  Tucker refuses.  He bites the fish in half to ‘prove’ it’s not a real fish.  Tucker still refuses.

Thus the life of a spectrum family.  Yes – this is a funny story.  Yes, this would probably not be an uncommon story about families of toddlers – but Tucker is 13.

He doesn’t notice the environment that the words appear within or get the inferences associated with the words.  The ‘fudge fish’ may appear on a container of ice cream but he can still only can imagine the type of fish he knows – ones in a tank, lake, river, or ocean.  Why anyone would create candy in the shape of a fish is beyond him.  He simply does not make the inference that fish and ice cream don’t belong together.

Happy Friday Friends!  Enjoy the holiday weekend….treat yourself to some Phish Food ice cream.  It’s not only delicious but has a purpose!

From:  http://www.benjerry.com/flavors/phish-food-ice-cream

“Since 1983 Phish have pioneered a genre-defying style of improvisational rock and earned themselves one of the most devoted fan bases of all time. They are unlikely rock gods.  They’ve never had a hit single, they made one music video that went nowhere. They’re just four guys who met at college in Vermont and loved to practice, loved to play, and were committed to giving their fans a transcendent experience every night.

On March 18th, 1997, Ben & Jerry’s and Vermont-based jam band Phish launched Phish Food® with a special one-off show and ice cream bash.  As the curtain went up, Ben and Jerry took the stage to introduce the flavor and the band.  Ben explained that working together to create the ice cream flavor was born out mutual respect and “a real spiritual connection.”

What united both sides was deep passion for the environment in their home state of Vermont.  The band members all agreed to funnel their royalties from Phish Food towards environmental causes. They were particularly interested in cleaning up Lake Champlain, the 125 mile long lake on the border of Vermont, New York, and the Canadian province of Quebec.”

Day #358 – His Dad

If you’ve been reading you know that Tucker’s dad and I are no longer together.

It’s true – and I’m pretty sure it’s not what either of us imagined on the day we said, “I do.”  I have to place bets that no one expects to be where we ended up.

14 years past that June day…and here we are.  Separate – but always connected by these two beautiful children.

Am I saying thank you to my former husband?  (Yes…I refrain from saying ‘X’ because I have no desire to ‘X’ him out of my life).

Yes.

Yes, I sure am.

At one point in time we loved each other enough to create these two magnificent children.  One neurotypical, one not.

There is a myth that nearly 80% of marriages with a child on the spectrum end in divorce.  That is NOT true – but many folks still believe the statistic.  A study published in 2012 in the Journal of Autism and Developmental Disorders (http://link.springer.com/article/10.1007/s10803-011-1269-y) found no evidence that suggested these families are at a higher risk of divorce.

The stress of autism is real – appointments, testing, therapies, IEP’s, money for treatments, scheduling, behavior, disagreements, the burden of grief and guilt, lack of support – all things that simply add to the existing stress of marriage.  The funny thing about research is that it’s always changing – in an earlier study by researchers at the University of Wisconsin (Madison) it was found that parents of ASD children were almost twice as likely to divorce than families without disabilities (http://midus.wisc.edu/findings/pdfs/829.pdf).

I’m only giving this research to provide background.  It’s actually pretty simply to me – autism does not cause divorce.  People do.

Enough of that.  Moving on.

I’m thankful for his dad.  I know it seems sort of contrary to popular culture – but I’ve never been anything but contrary to normal.

You see – I don’t think there is any point of disparaging or hating someone you once loved.   What good does it really do?  It seems to me that it simply breeds more negativity…the one thing this world doesn’t need more of.  I have no desire to hold onto yuck…one can never heal until we figure out a way to let it go and move forward.

Move forward as a healthy, happy, and whole human.

It didn’t work – it was my fault and his fault.  Does that make me sad? Sure.  Did I mourn that relationship? Of course.  Do I have guilt?  Duh.  Do I dwell on it now?  No way.

In fact, I still love him – not in the way that married people love each other.  But I do love and care for him as a wonderful friend, as someone who still makes me laugh…and more importantly as the father of my children.

It’s my responsibility as their mother to encourage and guide that relationship – whether that means EVERY NIGHT goodnight phone calls (if my phone is charged…that’s another story)  or continuing to go out to eat as a foursome.  Our children know they are loved.  Our children know we will always work together to do what’s best for them.  Our children know that we still care for each other.

If there is such as thing as doing this divorce thing different and in the ‘right’ way…I think we’re as close as can be.

So, yes – here’s to you Slim.  Thank you.

Thank you for being different parent than I.  Not bad, just different.
Thank you for offering to attend meetings and be the bad***  if necessary.
Thank you for working at getting this thing called autism.
Thank you for commenting on my blogs that ‘my children have the best mother there is.’
Thank you for giving me a break from it all.
Thank you for listening to my frustrations.
Thank you for telling me that I’m a great writer.
Thank you for being their dad.

Now, if you could just refrain from letting Tucker eat an entire bag of Doritos in one sitting, that would be great.

photo