Day #264 – Ordinary Support

My daughter’s teacher (Mrs. Hartman) posted a poem a while back on her Facebook site.  Little did I know that my husband (who shares my Facebook account) had been keeping an eye on it…waiting for the right time to send it to me.  He LOVES to read…and I LOVE words.  We’re quite the pair.

I’ve been having a bit of a rough time of late – and it’s not been caused by anything or anyone.  It’s simply been my own brain trying to match reality and expectation, which is dangerous behavior.  I know it’s dangerous, but I think as humans we all get into the “I need to be this or do this” funk.  I try really hard to stay out of comparison land because it leads to nothing but trouble.  Unfortunately, I’m human…so sometimes I just end up there (okay…it’s not unfortunate that I’m a human…lol).

What’s causing the anxiety right now?  All of the things we *should* do this summer and all the things I *want* to do this summer.

Math tutoring
Service projects
Learning to keyboard (type)
Teaching piano
VBS
Vacation
Exploring our state
Painting
Science experiments
Exercise
Library programs
Gardening
Changing our diets to ‘preservative free’

I want to do all of these things.

I want to teach my children and expand their minds.
I want them to catch up in academic areas in which they are struggling.

I had a bit of a break-down thinking about all of these things – and working, and doing laundry, and keeping the house clean, and visiting friends/family, and…, and…, and…

I just can’t do it all – I did’t know how I was going to show them an extraordinary summer.  It must have been pretty obvious that I was getting a bit stressed about all the shoulds and the wants.

Just in the nick of time he sent me this poem, with the caption, “This made me think of your awesome momness.”  (I was later told that it came from “The Parent’s Tao Te Ching, A New Interpretation” by William Martin)

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I was right in the middle of doing four different things.  My phone beeped.  I stopped.  I read.  I sat.  I let the tears roll.  I read it again. And again.  And again.  How did he know?

He pays attention and I knew he was right.

This is how I ‘mom.’  I’d like to say that I always planned on momming this way…but I think that would be a lie.  It has everything to do with the spectrum entering our lives.  The stress I was describing above was coming from the life I thought I would live.

The life I actually live is much better.  Having autism in our home has helped me to recognize the marvel in everyday life.  The pure joy when a fresh picked peach leaves juices rolling down your chin.  The sorrow that is felt when we think of it being two years since our beloved Guinea Pig, Snuggles, passed on.  The pleasure of holding a hand across a cold stream.  The feel of a puppy’s wet nose against your hand…begging to be pet.

Thanks to Mrs. Hartman and my husband – this summer I’m going to wary of being a fool.  Instead of an extraordinary summer, we’re going to focus on finding the marvel in the ordinary.

I have VERY good feelings…

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Day #263 – Is it time?

I’ve been struggling with this for the past year.

Is it time?

Is it time for Tucker to ‘exit’ his IEP?  (See IEP Posts Here… Day #149, Day #150, Day #151, Day #152, Day# 153)

My husband and I had a lengthy conversation about this last night.  We both struggle.  We struggle because we realize he is doing amazing – and while this success has largely come from his hard work, it also because…

of fantastic classroom teachers
of amazing special education teachers
of processes in place to gain immediate, often proactive, assistance
of continued strong and open communication
of  time spent forging relationships

We recognize the truth and it’s a Catch 22.  His progress may stand in the way of the very supports that encouraged this progress.  Within the next year it will be increasingly difficult to develop new academic and/or behavior goals to keep the IEP.

So, what’s the problem?

The system – and I’m not referring to our school – I’m referring to the process.

It’s all or nothing.  He is either on or off the IEP.  He is either eligible for services or not.  The goal is always to have children exit the system, my goal has always been to not have an IEP.  However,  the process of exiting is troublesome.

In our perfect world, here is how it would go…

We all agree that he *could* be successful without an IEP (the operative word here is could).  His IEP team and teachers would come together to discuss a year’s worth of ‘slow down services.‘  What does that mean?  Instead of meeting with his special education teacher every day, he meets with her 2-3 times per week in the first trimester/semester.  We continually monitor until one of the following happens…

  1. As the slow down year progresses in a positive direction we reduce that to 1-2 times per week in the second trimester/semester. At the end of the first slow down year we reevaluate.
  2. If, in that time, we find that difficulties are persisting and increasing we simply go back to an every day model.

I know, it makes too much sense.  Why would we work to slowly remove services from our most vulnerable students?  Why would we gradually set them free in this sink or swim world?  I often compare what *should* happen to obtaining a driver’s license in Iowa.

  1. At the age of 14, driers are eligible to apply for their learner’s permit.  The permit is awarded after taking a written test. This permit allows driving with a parent or legal guardian, an immediate family member who is at least 21 years old, a driver’s education teacher, or an adult who is at least 25 years old and has written permission from the parent/guardian.  Drivers may not carry more than 1 passenger who is a minor without adult supervision, unless they are a family member.
  2. After obtaining a learner’s permit, drivers move on to obtaining a provisional license.  This requires taking an approved Driver’s Education course that consists of 30 hours of classroom instruction and six hours of supervised driving.
  3. Upon successful completion, driver’s can apply for their intermediate license.  This license allows unsupervised driving from 5 a.m. to 12:30 a.m.  Between 12:30 a.m. and 5 a.m. drivers can drive with a licensed driver who is a parent/guardian, immediate family member older than 21 years old, or designated adult over 25 years old.
  4. To obtain the ‘final’ instructed Iowa Driver’s License, drivers will have had an intermediate license for 12 months, be accident free, have written approval from parent/guardian, and had 10 more hours of supervised driving.

It may seem as if I have digressed – but I’m simply trying to make a point.  Drivers are awarded full licensure ONLY after both meeting academic (written tests) AND practice requirements.

Tucker’s academic success comes only after much practice and this practice comes through his IEP goals and meeting with his special education teacher. Exiting him from the IEP program is like removing the safety net and I’m no Nick Wallenda.

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I am not that brave
I am not a risk taker.
Not when it comes to my child’s academic success.

When I asked about this ‘slow down’ idea I was told, “That’s not the way we do things.”

I’m not very good at being told, “That’s not the way we do things.”  That is not an acceptable reason – why couldn’t we be more creative?  Why shouldn’t we work at changing the system to better serve our children? Is it because we’re bound by state and/or federal regulations?  So, someone simply needs to be brave enough and take enough risk to ignite change in the way the system works?

I am that brave.
I am that risk-taker.
Especially when it comes to my child’s academic success.

Day #262 – Mrs. Petersen

Several weeks ago I asked several of Tucker’s teachers to write about their experiences with him over the years.  Since today is the first day of summer vacation I thought it would only be appropriate to begin blogging some of their writing.  First up?  Mrs. Petersen – Tucker’s Literacy (Language Arts) 7th grade teacher.

If you recall, we have always struggled with writing and this year is not different.  What is different though?  Mrs. Petersen – and her ‘want’ to really ‘get’ Tucker.  She’s a gem and we’re VERY lucky to have her on our side.

When the trees start budding and the dandelions start splattering the earth with their bright yellow color, I start developing that end-of-year excitement. I swear that I get almost more excited than my students for summer break, but not because I don’t love being a teacher. I love the feeling of completing another “year” and of having time to rest, reflect, and recharge before taking off on a new adventure in the fall.

Every year provides new experiences and new learning opportunities, and having Tucker as a student this year was no different. I have had students on the spectrum before, but I have always felt as though I had limited knowledge of what exactly that means. Meeting Tucker and Nikki has opened my eyes and increased my understanding immensely.

Nikki started off the year in an awesome way, by having a meeting with all of Tucker’s teachers to just get to “know” what Tucker is like. I found this meeting to be extremely informative and helpful. I left the meeting thinking about how beneficial that would be if we could have a meeting like that with every student’s parents! We would start the year much more informed and prepared!

I knew that I needed to make a conscious effort to connect with Tucker about things that interest him, specifically the Minnesota Vikings. I knew that if he has a day where he seems “off,” there is a reason behind it and we can most likely figure that out through open communication. I knew that sometimes he might just need to get out of the classroom and cool off. Had we not met with Nikki, I would have probably approached situations a little differently.

I think one of my biggest takeaways from working with Tucker this year is that autism looks very different for each child. Honestly, it would have taken me quite a while to realize that Tucker was a little different than most of his peers if I didn’t know he was on the spectrum. Additionally, I learned a ton of information through Nikki’s video presentation about what classifies someone as “on the spectrum.” I could definitely see a lot of those characteristics in myself and everyone I know!

This helped open my eyes to the fact that students with autism aren’t really that different than students without. However, I now totally understand how the noise in a hallway or a new classroom arrangement could just be too much for a student to handle. It all made a little more sense to me.

I feel fortunate to have been able to work with Tucker and Nikki this year. I feel lucky to have learned so much. I feel informed and empowered to use this knowledge in future years to make me a better teacher for every single student in my classroom.

Bet you’re wishing you had a Mrs. Peterson, aren’t you?

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Day #261 – Insert Yourself

If there is one thing I’ve learned over the past couple of days it is this…

You can say it until you are blue in the face, but others may never really get it.

(It seems fitting to use this idiom – blue and autism and all)

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So…keep saying it until you are purple and then indigo.

Insert yourself in the system, every day.  EVERY. DAY.

Just when you think people ‘know’ is the moment that you need to insert yourself to make sure people ‘KNOW.’

Yesterday I wrote about the end of the school year and how it causes anxiety for many children on the spectrum.  One simple thing that would ease this worry?  Knowing about next year.

Now, I get that the end of the year is FULL of chaos for all teachers, staff, and administrators.  I know Iowa’s pending budget issues probably have something to do with the uncertainty (read Day #210 – Autism Purgatory). It may seem that I think ‘my child’ is the most important…but let me clarify.

I have two children.  One is on the spectrum – one is not.

The one who is not on the spectrum is anxious to hear about her teacher for next year.  I simply say, ‘People will make that choice over the summer and we’ll find out by August.  No matter what, you’ll have a great teacher!’  She smiles and says, ‘Okay.’

The one who is on the spectrum?  He is also anxious to hear about his teacher for next year.  I simply say, ‘People will make that choice over the summer and we’ll find out by August.  No matter what, you’ll have a great teacher!’  Know what happens next?

When in August?
Where is their room?
What will we do during our time?
Are you sure we can’t find out now?
Will they know my other 8th grade teachers?
I know there are 4-5 teachers I could have – can I choose which one I want?
I don’t even know if I need someone, but I get why I have someone.
Do you think they will just let me pop in when I need help?
Will they be okay with me having snacks?
Did you tell them about me?
Will they like me?

Breathe, mama, breathe.

Know what could have happened if we knew this information a couple of weeks ago?

When in August?
Actually, Tucker.  We know now!  How exciting is that?!?!

Where is their room?
Let’s go visit their room and you can begin thinking about how that will work with your schedule next year.

What will we do during our time?
I don’t know, but we’re going to meet with the new teacher.  I bet you could ask him/her and tell them about all the things you like and know.

Are you sure we can’t find out now?
Yes, we can.  We know how important it is to you.

Will they know my other 8th grade teachers?
I bet so, but you can ask when you meet him/her.  You could probably even talk to your current teachers about your new special helper.

I know there are 4-5 teachers I could have – can I choose which one I want?
Possibly.  You could have a say, but the final decision will be up to the school.

I don’t even know if I need someone, but I get why I have someone.
Good.  I’m glad you’ve come to the point that you know how helpful it is to have an extra adult on your side!

Do you think they will just let me pop in when I need help?
I think it would be great if you asked them when we meet.

Will they be okay with me having snacks?
I wouldn’t know why not, but we’ll ask to be sure.

Did you tell them about me?
I told them ALL about your awesomeness – AND the things that you will need help with.  Trust me, I already know this teacher and we’ll be talking A LOT about how to help you be the best you can be.

Will they like me?
Why wouldn’t they?

It’s a handful of children that truly need to know.  It’s something SO simple that causes SO much peace.

So, today I began inserting myself…again.  It’s a good thing indigo is my favorite color.

Day #260 – It’s The End of the Year…

…and we know it.

For the past week or so I’ve had this R.E.M. tune in my head to these alternate lyrics.

For the past two weeks we’ve been managing the end of the year.

Yes, the end of the school year is certainly an exciting time – but it also comes with a heightened level of anxiety.

For our special education teachers….

It’s pure chaos.  The end of the year is filled with assemblies, celebrations, and field trips.  While these events are fun for most students and teachers – they are not fun for those of us in the spectrum world.  While Tucker has grown in his ability to deal with the chaos, there was a time…

  • A time where every assembly had to be discussed in great detail at least a week before – and then every day until the assembly happened.
  • A time where special seating was required at an assembly in case it was too much (which it often was).
  • A time when an aide simply stayed with him in his comfortable environment.
  • A time when field trips required social stories.
  • A time when celebrations created more chaos than what was manageable.

Why? Here are just four reasons…

  • Alternate schedules
  • Sensory overloads
  • New people and faces
  • Different food

I was reminded of this a couple of weeks ago.  Every year the students in our middle school spend part of a day engaging in community service.  They may clean up a park, pick up trash, or help an elderly person.  I saw Tucker’s former Special Education teacher that morning and asked her how it was going…I knew the day simply added stress to her already stress-filled day.

She replied, ‘Oh. Okay.  I think I’m ready.  I have a back-pack full of chew toys so now one tries to eat a branch. I have snacks.  I have water bottles.  I have band-aids.  I have extra clothes.  I have kleenex.  I have everything I think I could need.’  We laughed because this is most certainly her reality.  These special education teachers go into ‘work more’ mode – more planning ahead, more putting out fires, more talking, more of everything.

For our children…

I know most children love to be done with school.  My son is not a huge fan of summer break.  Sure, he is a fan of not ‘learning’ during the summer – but it’s the other stuff he misses.

School provides schedule
School provides structure
School provides more adult interaction
School provides forced social interaction
School provides iPads and assistive technology

Although it’s the end of the year – to these children it can feel like the end of the world.  What will they fill their days with?  What will they do?  What does next year look like?  There is so much uncertainty.

From the National Autistic Society’s article, Change: preparing a person with Autism,“A person with an ASD thrives on being in a familiar environment with routine and structure,” While children (like Tucker) may not enjoy the ‘school’ part of school they take comfort in the structure.  They know what is going to happen as well as when and where and why.  This helps children with autism feel safe.  When that predictable environment disappears, their anxiety rises.  This rise in anxiety can cause meltdowns – which is simply a communication tool to tell us that they are not feeling safe.

For parents…

I may not be like most parents, I LOVE summer break. I love having my children home.  I actually dislike it when they go back to school.  I love getting to spend more time with them…but it does add a certain level of anxiety.

Years ago my mom gave me a large antique chalkboard.  We had no idea that it would become a central part of our lives.

Years ago the daily schedule was written on the chalkboard – what time we were waking, what time we were eating, what time we were running errands, what time we were napping, what time t-ball practice was, what time we were going to bed.  We had to be careful to include any ‘special’ activities – trips to the pool, weddings, visits to Grandma and Grandpa’s house.  If something wasn’t on the schedule it simply couldn’t happen.  Writing the schedule became part of my morning routine.

By the time 4th grade came we simply did weekly schedules with only practices and out-of-the-ordinary events.

Now the chalkboard is used for uplifting messages.  No more schedules – but it doesn’t mean that the anxiousness of uncertainty has dissipated.  It is better, but not gone.

He has already asked…

What day school starts again.
If his locker will be the same.
If his teachers will be the same.
If he’ll use the same backpack.
If we have to go anywhere this summer.
When he’ll see his friends.
How much time he can spend in the pool.
What his daily technology time limit will be.
How many chores will be on his daily list.
If he’ll be expected to mow lawn.
How late he can stay up.

The last day of school is tomorrow…

My most used answer to any of these questions is, ‘Why don’t you go for a swim?  That always eases your mind.’

My hubby better get that pool up and filled …summer officially begins in 17 hours….

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Day #259 – Practice Before Theory

I was recently engaged in a conversation with someone who was telling me about the training they received with regards to autism spectrum disorders.  The conversation seemed very mechanical, so I asked who did the training. They responded with someone from their Area Education Agency.

That’s good, it’s a start.
But, it’s not enough.

If you are in the position to provide this type of training to your staff (teaching or otherwise), do us all a favor.  Invite some moms and/or dads.  I bet they would be willing to share – for very cheap – in fact, maybe just a smile or a friendly invite.  A chance to tell teachers and others about their child?  I don’t know many that would turn that opportunity down.

Why?

These people are in the trenches every single day.  EVERY. SINGLE. DAY.  Do you want to know how to help their child?  Ask them, I bet they have a pretty good idea.

Better yet, ask some who has autism.

I am an academic nerd – I’ve come to terms with that – but it doesn’t mean that I don’t see the ‘backwardness’ that we sometimes use.  University curriculum is developed so that theory often precedes practice.  It makes sense – a student must understand the principle before applying the ideas to their work.

Only, in this case – it just doesn’t work that way. Want to know how I learned so much about autism?

From reading about it – practice before theory.
Initially one may think reading is learning theory, in this case it is much different.  Before I read anything about why autism happens I read stories from other moms and learned strategies they were using at home.  I read stories from art teachers who used art therapy, from music teachers who used music therapy.  I listened to their stories.  I thought about how those ideas could (or not) apply to my Tucker.  All of these readings provided ideas and ideas – but none told me ‘why’ it worked.

From living it – practice before theory.
Before I tried any behavioral modification I had to allow him (and me) to experience all of it.  Full on melt-downs, incomprehensible screaming, hitting without cause.  I listened to him.  I thought about him.  I loved him through every tough moment.  I spent an immense amount of time trying to enter his world, trying to recognize how his senses took in information.

Theory is good, theory is important.  Theory helps explain why, and at the risk of losing credibility as an academic guru I would propose that in this case – theory was of little help to me, and still is.

Recall Day #200 – Stop reading this blog, on that day I shared why I don’t really like reading about autism anymore.  Today’s headlines?

Study Links Delayed Cord Clamping to Improved Social & Motor Development

Immediate clamping of umbilical cord after birth associated with lower fine-motor and social skills at age 4, particularly in boys

Ugh…just one more reason why my boy may be different.  But the article (like so many) make a claim that is not fully quantified and creates undue panic.  I imagine myself to have this internal discussion, “How long did they wait before clamping the cord?  How long is a delay? Oh my gosh…a delay is 3 minutes – my baby’s cord was clamped at 2:45…now he will have delays.” Yes, that may feel excessive – yet, I know many folks who would have those thoughts.

I also am not a fan of theory-based research because autism is mysterious.

  • I don’t know why something works for another child and not for my own.
  • I don’t know how he can be hypo and hyper sensitive all at the same time.
  • I don’t know something works for my child and not someone else’s, I can hypothesize…but only for my child – not someone else’s.

There are so many tactics that we use – and I can’t tell you why they work.  I wish I could.  I wish I could give a recipe or a prescription, ‘Just do this…it will solve the problem you are having!”

autism-dx-clipboard-SS

But that’s just not how autism works.  Autism isn’t a disease on a piece of paper.  Autism is a child – living, breathing, striving, and if supported…thriving.

So, the next time you (or someone you know) decide to put together a training/teaching session about ASD – ask a couple of parents.  Better yet – ask parents who have VERY different spectrum-affected children.  Ask a parent of a child who is nonverbal and one who is highly verbal.  Ask a parent of a child who spends little to no time with a special education and one who spends the entire day in the special education classroom.

Then, and only then, upon hearing real stories from those in the trenches will people begin to understand the vastness of the spectrum and the very real, yet simple ways you can help our children.

Day #258 – The Line

First – these thoughts have been swirling in my head for quite some time.  If they don’t make complete sense, I apologize.  It’s a rare moment that I have difficulty putting thoughts into words…but here I am, having difficulty.

One of my other difficulties is with the line…

On one side of the line is helping Tucker develop coping strategies…because these strategies help him assimilate with all of us neurotypicals.
On the other side of that line is just leaving it all as is..because we should just accept who he is, as is.
The problem with the line?
We live in this world…not my ideal world where everyone is simply accepted for who they are – no questions asked.

On one side of the line is sitting him on the end of an aisle at a concert…because if he gets too overwhelmed he will disrupt the concert and won’t care who is watching or listening.
On the other side of the line is  putting him in the middle of an aisle…because one day he might get ‘stuck’ in that spot and he’ll have to figure it out.
The problem with the line?  
We live in this world…not my ideal world where no one would stare or whisper.

On one side of the line is allowing him to retake a test…because he forgot his ‘cheat sheet’ that the rest of the students had.
On the other side of the line is not allowing him to retake a test…because he won’t get ‘re-do’s in life.
The problem with the line?  
We live in this world…not my ideal world where the focus is learning to learn instead of learning for a grade.

On one side of the line is advocating for him to teachers…because he can’t always describe exactly how he needs help.
On the other side of the line is not advocating for him…because I won’t always be there.
The problem with the line?  
We live in this world…not my ideal world where he is ultimately self-aware of what he needs to thrive.

On one side of the line is leaving social events…because he needs his rest.
On the other side of the line is staying at social events…because he will have to figure out how to deal with his tired.
The problem with the line?  
We live in this world…not my ideal world where he could simply catch up on sleep at another time.

On one side of the line is me being proactive…because removing barriers is the best way for him to have continued success.
On the other side of the line is me allowing him to fail…because he will fail and needs to learn how.
The problem with the line?
We live in this world…not my ideal world where others will be there to pick him up after he falls.

On one side of the line is letting some misbehavior go…because he constantly feels not good enough.
On the other side of the line is reprimanding poor behavior…because how will he ever learn?
The problem with the line?
We live in this world…not my idea world where behavior is seen as a response to environment.

See the pattern here?  This is simply a sampling of my ‘line’ issues.  Know that every decision I (and other spectrum parents make) is often a shot in the dark…it’s a guess…it’s a best guesstimate.  Sometimes we’re spot on, and other times we’re way off – but we’re doing the best we can with what we already know and what we can anticipate.

Trust us – we would like to choose the side of the line that leads to the highest level of ‘typical’ness.’
Well, actually –  sometimes not.  See, there is this thing called ableism.

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THIS is the reason we struggle (or I struggle) with the line.  It’s simply a balancing act – accommodating his diversity while helping him develop skills that help him have success in a neurotypical dominated world.

Regardless of whatever side of the line we happen to fall on for the day, Tucker IS a fully essential human (unless tired, hungry, or hot – then he becomes sort of alien-like). I simply want him to strive to be the best version of himself.

Day #257 – Celebrating Dr. Nash

It was 2001.
I was 25.
I watched A Beautiful Mind.
It was my first exposure to John Nash.

john-nash

This movie affected me in profound ways.

It was a story about love…the dialogue made me gasp in hopes of finding a love like Alicia and John.
Alicia: How big is the universe?
Nash: Infinite.
Alicia: How do you know?
Nash: I know because all the data indicates it’s infinite.
Alicia: But it hasn’t been proven yet.
Nash: No.
Alicia: You haven’t seen it.
Nash: No.
Alicia: How do you know for sure?
Nash: I don’t, I just believe it.
Alicia: It’s the same with love I guess.

It was a story about learning…the dialogue gave me hope.
Nash: Classes will dull your mind, destroy the potential for authentic creativity.

It was a story about hope…the dialogue provided warmth.
Alicia: I need to believe, that something extraordinary is possible.

It was a story about beauty…the dialogue encouraged viewers to see the world in a different way.
Alicia: God must be a painter. Why else would we have so many colors?

It was a story about being different in a world that has clearly defined expectations for normal.  Maybe, in some ways, the movie was preparing me for a life in the spectrum world.

Upon learning about his death today I couldn’t help but to read more about him and I was struck by an article written by Sylaiva Nasar in the November 13, 1994 issue of The New York Times. She wrote, “Alicia Nash believed very firmly, according to several people close to her, that Mr. Nash should live at home and stay within Princeton’s mathematics community even when he was not functioning well. Martha Legg applauds her decision. “Being in Princeton was good for him,” said Mrs. Legg. “In a place like Princeton, if you act strange, you’re special. In Roanoke, if you act strange, you’re just different. They didn’t know who he was here.””

I couldn’t help but to think of Tucker and others who have Autism Spectrum Disorders.

I couldn’t help but think of the reason I write.

I began writing to help create a common understanding within the community that Tucker currently resides within.  Now, it seems I write to create a common understanding within communities around the world.

More from Ms. Nasar, “Roger Lewin, a psychiatrist in Baltimore, agrees. “Some people are so disturbed that there is no way to get in touch with them, but for a significant group, compassion and receptivity of the surrounding community make all the difference.””

Throughout this blog I have used the words, ‘awareness and acceptance’ now I find myself comparing those two words to compassion and receptivity.  It’s really the same – compassion in another’s differences and being receptive to those differences.

I see this compassion and receptiveness every day in our community.  I continue to advocate so that Tucker (and so many others like him) can live in a community where if he acts strange, he’s special – not different.

Ms. Nasar then quoted De Larde (Alicia Nash) “it’s just a question of living a quiet life.”

When I read those words I lost my breath.  Living a quiet life…

A life simply lived…a quiet life.  A life that is not full of surprises – yet, lived by a man who surprised people regularly.

Tucker’s life.  A life lived simply, and quietly.  A life that is not full of surprises – yet, lived by a boy who surprises people regularly.

How lucky we are to have these very special people in our world…and within our midst.

Pay tribute to John Nash…have a conversation with someone who has a beautiful mind.

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Day #256 – Neverending Spectrum Business

It’s 11:30 PM-this will be a short post.  Tonight was Tucker’s bonus brother’s graduation party – which is why this post is so late.  We spent the day preparing and partying.

Here is what struck me about tonight…and really about today.

It’s just never-ending, the spectrum business that is.

Will we have food that he likes?  I need to have a back-up plan because if he’s hungry he’ll lose it.
Will there be too much noise?  I need to have a back-up plan because if it’s too loud he’ll lose it.
Will there be too many people?  I need to have a back-up plan because it’s too much he’ll lose it.
Will there…
Will there…
Will there…

My point?  It’s just never-ending – the planning and prepping – on top of everything else we were already doing.  It really is a Catch 22 for life on the spectrum.  Always planning and prepping for something that may never happen, but the SECOND you don’t prep – all h*ll will break loose.

I had all kinds of alternate plans for very situation imaginable.  It’s part of being a parent…but spectrum parents have to be much more intentional about all of the issues that may arise.

He did fine, great actually.  I’m not surprised that he did so great – but I’m fully aware it could have easily gone the other direction.

My favorite part?  On the way home when my husband took a moment to praise him…

For being patient…
For playing with others…
For taking care of his needs…
For finding something to eat…
For handling a bloodied knee with bravery…
For knowing when he needed a break, and taking one…
For reaching out to us when he needed help or was feeling weird…

Nah… that wasn’t my favorite part.

My favorite part was when Tucker simply responded, “Thank you. The chicken wings were delicious.  Mom, can I have a leftover cookie?”

Self-awareness and simplicity at its best…just like a good old fashioned chocolate chip cookie.

‘Of course you can have a cookie.”

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Day #255 – Old Soul

I’ve asked Tucker’s teachers to write about their experiences with him.  I’m waiting until I get them all to post – but I think it will paint a really good picture of what our teachers do (and don’t) know.  More importantly?  How our teachers have always believed in him and really worked to get him.

On Tuesday one of the teachers let me read what she had so far. One of the ideas she wrote about was she always felt as if there was another adult in her classroom, Tucker.

People often tell me how mature he is –  I’ve always thought it’s due to his echolalia (aka – tape recorder).  But…it’s more than that.  He just has an understanding of things beyond his age – see Day #133 – I’ve Never Seen a White Person for just one example.

Recently, a friend wrote to me – “Today I read something online and it reminded me of Tucker.  I think Tucker is an old soul. He’s just wise beyond his years and doesn’t get caught up in the stuff that doesn’t really matter.  I’d like him to spend more time with my son, can we make that happen?”

Is Tucker and old soul?

It seems the characteristics of an ‘old soul’ certainly match a more agrarian, collective society…one that existed 50 years ago.  One that I wrote about in Ode to a Farmer and Old Soul Planting.  I’ve often heard the term ‘old soul,’ so I decided to do a little searching.

I found ‘9 Signs Your Are an Old Soul’ from http://lonerwolf.com/9-signs-youre-an-old-soul/

 

You tend to be a solitary loner.  Yep – this made me LAUGH OUT LOUD.  Last night we were talking with a friend about ‘grounding’ children. My husband laughed and said, “We can’t ground Tucker.  Telling him to go be alone in his room would be heaven.”  It’s true. He likes people, but he is perfectly content being alone.  I used to think it was because of the language and relationship-building barriers.  I know this is a factor…but I now I choose to focus on the fact that he is ultra confident in being himself.  I think that’s awesome.

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You love knowledge, wisdom, and truth.  Yep – he is always wondering about larger ideas in life. Tucker’s nose is usually in a book (or an electronic version of a book).  He’s always reading and learning about something (even if it’s not always what he is SUPPOSED to be learning).  Most of his teachers report their only ‘real’ trouble with him is when he needs to put down the book and get back to work.

Recently he told me he wants to be a history teacher because he wants people to learn about the past so they don’t mess up again.

I have long said that Tucker will make a difference in others’ lives because of his early attention to social justice.  He didn’t understand the inequality that exists between people before he really knew the extent of the inequalities.

You’re spiritually inclined. Yep – he does not have an ego.  When he played basketball this year he never once compared himself or complained about playing time.  He simply doesn’t recognize people as being better or worse and rarely compares himself to another (read Day #138 – The Red T-Shirt).  He also gets the better part of religion – the part that focuses on grace, forgiveness, and health.

You understand the transience of life.  Yep – he has a strange understanding of the ‘cycle’ of life.  This year his 5th grade teacher passed away.  I was worried and wondered how he would handle her death.  First he wanted to know all of the details about her illness.  Then, he simply said “I feel bad for her family because they will miss her- but it’s better that she went to heaven and isn’t in pain.  She was a great teacher.  She won’t ever really die though, because she had so many students who know her ideas. They will teach their children and their children and their children…you know what I mean?”

What?!?!  Was that my 12-year-old?  Sure was…

You’re thoughtful and introspective.  Yep – he is always thinking about others.  The other night he exited the auditorium immediately after his sister’s orchestra concert.  We thought it was because he was on overload.  That was not the case.  He wanted to be first in line to get ice cream.  For himself? Possibly, except that he returned with two cups.  He also got one for Estelle so she wouldn’t have to wait in line. He knew there would be a big line once all of the children finished. He doesn’t always learn from lessons ‘taught to him’ but he always learn from lessons ‘taught to himself.’

You see the bigger picture.  Yep – he does not get lost in the details of life.  He understands that life is more than any given moment.

You aren’t materialistic.  Yep – he could care less if his t-shirts came from Target or the Nike Store.  He doesn’t really even recognize ‘brand’ labels.  He is happy to just be where he is – he never asks for gifts and every Christmas says, “I have everything I need – a home, a family, and food.”

You were a strange, social maladaptive kid.  Yep – I love this quote from the website, “If you can talk to your child like he/she is an adult – you’ve probably got an old soul on your hands.”

You just ‘feel’ old. Yep – he prefers to have conversations with ‘older’ people.  He even has an ‘old’ sense of humor.  When he was four he was riding in the back of his Grandmother’s vehicle and she was backing out slowly.  He proclaimed, “C’mon Grandma, get ol Bessie moving.”

Here is what I know…as more parents tell me about their children with ASD I’ve recognized they seem to have many of these same qualities.  It seems pretty obvious that we should spend a little less time teaching them the ‘right ways’ to think, feel, and behave and spend more time learning from them how to think, feel, and behave.