Day #355 – The Compass of Love

I have ten more days of writing on this journey.  10 – I can’t even believe it!

Yes, I will continue writing…but I’m going to take a couple weeks off.  Unless, of course something major happens – in which case you know you’ll hear from me.

It’s actually 11 days…but here’s the spoiler.  Tucker is writing on the last day.  We’ve been tossing around ideas for quite some time – and we started getting an outline of ideas together last night.  It probably won’t be very long – but it will be his voice.

I’m pretty stoked about that.

As I enter this time of my writing I just wanted to take a moment and reflect.

Reflect upon how this blog has changed our lives, reflect on how far we really have come, reflect upon how much my own understanding of the spectrum has grown.

Reflect upon relationships created through this blog, reflect about the impact of this blog on my family and friends.

How truly blessed I am to have had this experience.  I decided to write every day for a year because I have a tendency of acting without really thinking all the way through things (my parents are laughing and nodding their heads right now).

It’s true I didn’t think through this commitment before I hit ‘publish.’

It’s true and it’s a part of who I am.  Does it get me into trouble?  Surely – but I always try to think of what I learned from just jumping in.  Sometimes it’s good, sometimes not – but is always interesting.

In this case it’s been good AND interesting.

I missed four days – vomiting, half-marathon, technology troubles, and vacation.  Four out of 366 – that actually feels pretty good.

I will tell you it hasn’t always been easy.  There were moments that I would stare at the computer screen, moments that I just wanted to go hang out with my friends, moments that my husband sat and waited for my attention.  Moments that I ignored phone calls, moments that I ignored papers that needed to be graded, moments that my laundry went undone.

But here we are…355 days later and nothing major fell apart…and maybe that’s the lesson of it all.  Life just keeps going.  Every day I wake up.  Every evening I go to sleep.  It’s kind of like autism – life doesn’t stop for autism.  Life doesn’t slow down for autism.  Life just keeps on going…and it’s our job to try apply meaning.

Autism or not…life just keep going.

One of my favorite books is The Alchemist.  It’s an odd little book about a shepard boy trying to find his destiny.  I first read the book many years ago and found myself rereading it about a year ago in preparation for a leadership class I was teaching.

As usual, as I have aged and matured – the book made more sense than ever before. Obviously, I couldn’t have done all of this writing without Tucker’s approval.  Tonight though?  Tonight I need to thank someone else – my husband.  I wrote about his amazingness on Day #145.

Throughout this process he has nursed 10 year old anxiety, wiped away eight year old tears, talked me through a stuck moments, helped me refine topics, developed titles, fed me, brought me soda, cared for children, and generally been a rock of support.  He thinks I’m a phenomenal human being – I think his standards are too low. 😉

An excerpt from the Alchemist, “The desert was all sand in some stretches, and rocky in others.  When the caravan was blocked by a boulder, it had to go around it; if there was a large rocky area, they had to make a major detour.  If the sand was too fine for the animals’ hooves, they sought a way to make the sand more substantial.  In some places, the ground was covered with the salt of dried-up lakes.  The animal balked at such places, and the camel drivers were forced to dismount and unburden their charges.  The drivers carried the freight themselves over such treacherous footing, and then reloaded the camels.  If a guide were to fall ill or die, the camel drivers would redraw lots and appoint a new one.  But all this happened for one basic reason:  No matter how many detours and adjustments it made, the caravan moved toward the same compass point.”

Life really never goes as planned, does it?  But we’re always pushing on – pushing on towards one compass point.  I owe this partner of mine so much – but he would scoff at the idea of me ‘owing’ him anything.  He knew we had a story to tell – a story that would help others.  The amazing comments from readers were never a surprise to him…he just continued to say, “I’m so honored to be your husband.”

That compass point is Tucker, helping him to become the best version of himself.  Honestly though?  I don’t know if I could do what I do for him if it weren’t for the type of love that I receive from my husband.

When I was in my 20’s and read the Alchemist I believed in this paragraph – but as I reread the paragraph last year I sobbed.  I sobbed because it’s what I have. This shepard boy, the star of the story, meets a woman and the narrator writes about love.  “It was the pure Language of the World.  It required no explanation, just as the universe needs none as it travels through needles time.  What the boy felt at that moment was that he was in the presence of the only woman in his life, and that, with no need for words, she recognized the same thing.  He was more certain of it than of anything in the world. He had been told by his parents and grandparents that he must fall in love and really know a person before becoming committed. But maybe people who felt that way have never learned the universal language.  Because, when you are in that language, it’s easy to understand that someone in the world awaits you, whether it’s in the middle of the desert or in some great city.  And when two such people encounter each other, and their eyes meet, the past and the future become unimportant.  There is only that moment and the incredible certainty that everything under the sun has been written by one hand only.  It is the hand that evokes, love, and creates a twin soul for every person in the world.  Without such love, one’s dreams would have no meaning.”

It’s this love and compass that helped me write – not only to begin writing but to write every day.  It wasn’t just me…it was his love for me and for Tucker.  It was his love for our story.  It was his belief in all of us that propelled my confidence and willingness to share this story with all of you.

For that, I will be forever grateful.

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Day #354 – Don’t Give Up

Today was our family reunion and I can’t help but to smile – smile so, so, so much.

I actually love family reunions –  have THE BEST cousins in the world.  Seriously – the best.  I feel so blessed to have grown up with a huge family – on both sides.

My fondest memories are of wrapping paper fights, my uncle running us down for birthday spankings, Great Aunts and Uncles still knowing your name and asking how school was going.  It’s a bit like the Cleaver’s – only A LOT louder.

Our family reunions 10 years ago were full of stress and angst.  Full of glares from elders and others trying to ‘reign in’ my child.  It was filled with meltdowns and worries about food.  It came with nap preparation and leaving early or coming late.

Actually, we often didn’t go because it was just so much, too much.  This made me sad because I really do dig my family.

Let me tell you how this year went.

First, so many of my family members commented on my blog.  One of my cousins hugged me and said, “I know I haven’t seen you in awhile, but it seems like I see you every day.”  Seriously – how heartwarming is that?

We were able to prepare Tucker – and we began yesterday.  Not only did we talk about the reunion itself, but he was part of the preparations.  I think this helped him not only understand what was going to happen – but how it would look.

This morning arrived and he was a trooper- helping with all the things we asked.  I was frying fish (from my Aunt and Uncle in Alaska) and he asked to help.  So – I taught him how and he continued to fry.  He knew – he knew I expected him to be a part of the party…but it was okay to be on the sideline.

Then I watched – I watched as people said hello to him.  I watched as he nodded and half-waved.  I watched as people struck up conversation.  I watched as he left and went back into the house. He began asking what time we were leaving – then continued asking what time it was.  I gave him my phone so he could keep track.

When we left we got 10 miles down the road and he began stimming.  The form?  Not rocking. This time it was repetitive – hitting himself in the face.  He was tired, he was overwhelmed – he was done…we left just in time.  Often the stimming will end once his sensory system has reached an equilibrium.  This time it lasted about 10 minutes with no end in site – so I handed him my phone again.

He stopped the self-harm – but with phone in hand began rocking in his seat.  I looked at my husband and said, “I’m not surprised – he did such a great job today.”  Then he told me that he and Tucker had been ‘making deals.’  He would go in the house and Matt would tell him what time he needed to come back outside (and for how long) and be social.  He would come out, stay for a bit, and then leave.  This happened all day long.  How lucky am I to have this man in my life that works so hard at understanding and doing what’s right for Tucker?

It’s not about being lucky…it’s about being blessed.

Fifteen minutes later he fell asleep. My dad sent a text asking how Tucker was doing – making sure he felt okay with the day.  I smiled because that wouldn’t have happened 10 years ago.  Not because my dad didn’t care…but because he didn’t know.  Now he’s quite aware of how difficult a day like today is for his grandson.

When we arrived home he grabbed his iPad and headed straight to his room. I haven’t seen him since – and I’m leaving him alone until bedtime.

It was a beautiful day and here is why I wanted to write.

Parents – don’t give up.

Please don’t give up in your sensory diets and accommodations.  If we consider where we were and where we are now it feel like  light years.  I’m not joking.  Keep working at it – keep developing an understanding of what works for your child.

Please don’t give up pushing.  Push your child right up to the limit.  Make deals – it’s okay…it’s important that he is a part of the ‘bigger’ thing – but it’s more important that it’s in incremental steps.

Please don’t give up in your advocacy efforts.  The more people know the more they will understand.  The more they will reach out – or the more they will simply stay away.  Either is fine – but you know what goes missing?  The looks, the stares, the exasperation that you may feel.

Please don’t give up helping your child recognize what they need.  Tucker was able to understand the balance.  He knew when he needed a break.  He also knew that it was important to spend some time with his family – members that he knew…and members that he didn’t.

Please don’t give up.  I know there are moments where it feels like it’s never going to get ‘better.’  Ten years ago I would have NEVER imagined a day like this.  Ten years ago ago…NONE of this would have been possible.

In the iconic words of Jimmy V, “Don’t give up. Don’t ever give up.”

A day like this may be just around the corner for you.

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Day #353 – Watch This!

Seriously.

Sometimes I see something online and I am moved.  It actually doesn’t happen that often.  I get sent (and watch) plenty of poignant articles, blogs, and videos…so it actually take a lot to move me.

This one?  Woah.

Remember on Day #248 when I wrote about the problem with ‘that’ story?  You know that one – the one about the ‘amazing’ child that was nice to a child with special needs?

My hope is that one day these stories aren’t  newsworthy.  Wouldn’t it be great if being kind to others was the ‘norm’ instead of news?  We can always hope.

Regardless, I have to share this story and it’s ‘that’ story.  Why?  Because it’s just so, so, so good.

So. Good.

So good that I even played it for my husband in the vehicle over our speaker system – WITHOUT a wireless connection.  Yes, I sacrificed data because it is THAT good.

All that is right in this world is in this video.

Do yourself a favor.  Sit down. Take two minutes and 49 seconds and watch this video. I promise, it will be well worth the time.

Day #352 – Late Diagnosis

Something interesting is happening in the Autism world.

Adult diagnosis.

I asked Erin to tell her story on Day 287.  Her story was remarkable to me then and it still is today.  What’s even more remarkable?  How many adults are just now being diagnosed as being on the spectrum.

Most of the time these adults are ‘mildly Autistic.’  What does that mean?  It means that others just thought they were well…quirky.  We’ve often thought about Tucker in this way.  20 years ago he wouldn’t have been identified…he would have probably been the naughty kid that couldn’t sit still (hellooooo…sensory seeking), the kid that was always touching others, and the kid who was simply socially awkward.

In other cases, these adults could have been misdiagnosed.  Current research is telling us that many of these folks were diagnosed with mental illness, depression, obssessive-compulsive disorder, multiple personality disorder, a variety of intellectual disabilities, and even schizophrenia.

So what does this have to do with Tucker?  Nothing and everything.

I’ve talked with some of these adults.  Adult that have attempted suicide..many times.  Adults that have spent their lives pretending to be someone other than who they are.  Adults who never felt ‘normal.’  Adults who were given cocktails of different medications to ‘cure’ their ills – even though there was never a combination that worked.  Adults that turned to illegal and illicit drugs to feel better or closer to normal.

It makes me so sad.  So very sad that these folks have spent their lives trying to make sense of a world that couldn’t be made sense of.  Trying to fit into a world that was forcing them to become something that they weren’t.  It wasn’t ever going to work.  Ever.

I just can’t imagine what that had to be like.  I imagine Tucker trying to live in this world without knowing he’s okay just the way he is. Living without knowing that autism is a part of him – and at times, it does define him – but he is not less.  He is so much more.

Then I’m so happy.  I’m so happy that Tucker was born in 2002.  I’m so happy that he was born in a time when people began to understand the true ‘spectrum’ of the spectrum. I’m so happy that no one prescribed him medications to ‘fix’ something that couldn’t be fixed.  I’m so happy that no one described him as something less.

He, for the most part, has been met with compassion and understanding.

How do these adults figure out that they may have autism?  Well some, of course, read about it on the internet.  Some seek help from mental health professionals.  Some find that their children or grandchildren are diagnosed and then they seek help – recognizing that they have some of the same traits. Even more recognize that they have autism, but never really seek an official diagnosis.  Why?  Because sometimes a diagnosis can do more harm than good (in their personal opinion).

Receiving a diagnosis can be both costly and time-consuming – and many people simply don’t have the time or money.  It’s irony at its best.  They may not have the time because they are busy trying to exist in a world in which they don’t fit.  Others may lack the funds because they have not pursued occupations that support the strengths of autism.

Another factor may be the emotional effect.  Dealing with the anger of living with this thing, the grief of losing a sense of ‘normalcy,’ or even denial.

On the other hand – adults can experience huge amounts of relief.  Finally, their struggles and troubles in life make sense.

Is this personal to me?  Yes.  In writing this blog I have become ‘online friends’ with a woman.  She knows who she is and she was diagnosed as an adult.  She shared with me her struggles throughout her life and let me tell you they are huge.  They are movie worthy.  Finally, she was diagnosed – and for once in her life, her life made sense.

So, whenever she posts pictures of her sensory toys, the overload she is experiencing with social situations, or just general thoughts I smile.  I smile every time.  Every. Single. Time.  Why?  In the short time I’ve known her you can sense that she can finally be at peace.

No matter how she got there or how long it took the important thing is that she finally got there and it’s so lovely.

It’s so lovely to find that peace – but even more when she’s been looking for it for so long.

Dearest friend – you know who you are and know that I am BEYOND proud of you and really can’t wait for the day when (if you allow) I can give you a nice, tight, sensory-fulfilling hug.

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Day #351 – Self-Advocating and Veto Power

It was a great night last night.
It was a rough night last night.
It was an awesome night last night.
It was a horrible night.

For most of Tucker’s life my main goal has been to give him the language and the skills to advocate for himself.  I’m fully aware that I won’t always be there.  It’s just a necessity that he learns and understands what is best for him and then advocate for those things.

I do not want to be a helicopter parent.  I may appear to be that…but I would simply argue that it’s a closer teaching than anything else.

Advocate.
Teach.
Advocate.
Learn.

It’s been my mantra all along…remember these posts?  Advocate Part 1, Advocate Part 2, Advocate Part 3.

If you read a couple of days ago you know that Tucker was NOT happy with his schedule.  He was NOT happy to have to make new friends.

At our school there is this thing called Advisory.  I’m still not sure what it is, but it seems like what used to be called Homeroom.  So, it’s a smaller group of students that get together with a faculty member.  They play games, they get to know each other really well, they laugh – it’s like having a faculty mentor/friend that they can go to for help.

Tucker’s Advisory Faculty Member?  The Principal.

In classic advocating form…here is what happened (after an hour of explaining why he doesn’t need to make new friends).

Me: Tucker, If you don’t like your schedule what should you do?  I can’t do anything about it.
Him: I should ask Mr. S [the school counselor]
Me: Yes.  You could do that.  Who do you have advisory with?
Him: Mr. W.
Me: Yes, and what is his job?
Him: The Principal.
Me: Yes.  What does he do?
Him: Kind of runs everything at school.
Me: You have an opportunity here.  You get Mr. W. in a small group setting.  If you really want something done about your schedule, ask him.  That way you don’t have to find time or track down Mr. S.
Him: Great idea Mom.  What should I say?

So then we talked about not only WHAT to say…but how to say it and when.  This is an AWESOME moment of teaching advocating.

Then last night he comes home all ready to tell me about his experience advocating for himself.  It. Was. Awesome.

And then…

And then at the end of his story about his schedule he nonchalantly throws in, “Mom, I also told him I need to be done with Mrs. B [SpEd teacher]. I know what I need to know.  I know what I need to do.  I don’t need goals anymore.  I don’t need to be in a special program. He told me he would check my goals and get back to me.”

empowered

WHAT?!?!?!

Did he just advocate to be done with his IEP???

Insert internal strain of expletives.

I stared at my husband and he stared back.  Tucker went downstairs. I went into panic mode.

Here’s the deal.  Tucker is right.  He doesn’t so much need it this year.  You know why?  Over the past four years he has

been in the same building
with the same sounds
with the same people
with the same smells
with the schedule
with the same people

Notice anything in that list?  Same.  He’s the King of the Jungle right now – 8th grade in a 5-8 building.  He has NO idea what is coming next year.  My head started spinning back to this place. Tears started rolling.  I do know what’s coming.  I know that he appears neurotypical.  I  KNOW this…people will not get him or give him a chance if they don’t know.

Transitions are inherently bad for him.  Always have been.  Maybe it will be fine – but I’m not willing to use a ‘maybe’ for him when it comes to education.

The real question is…what do you do?  What do you do when your child actually HAS been paying attention and HAS been learning from your lead? Drats.

SO much pride in him advocating for himself.
SO much worry in him advocating for himself.

What to do….

Revert to your own mother’s advice, of course.  My mom would say, “You are the mom.  You are not the friend.  You have to do what’s right for him.”

I am so grateful that he has come this far.  His voice certainly matters, but I still have the veto power. It’s even more convoluted because I really dislike the IEP process -but I understand the value it has to his educational success. He’s come so far in large part because of his IEP…it would be like removing the safety net underneath a wire that is slowly raveling.

I told him that we would talk about this and that maybe our Special Ed time could look different than ever before.  I also told him how proud I was of him for advocating for himself and having the self-confidence to believe he no longer needs the supports.

So at this point…I guess I’ll just pray.

Then…when I raise my head I will send the Principal a message and tell him that is not an option until he’s through the transition of his Freshman year.  Then, yes – if everything is going well…then we will drop the IEP.

Day #350 – Calming the Chaos

16 days to go.  12 pages of notes…a far cry from where I began.

I have often received comments about how ‘God gives special children to special people.’

I don’t know how I feel about that.  Do we get the special children or do we simply learn how to ‘be’ to help our children be able to do and be their very best?  Several times while writing this blog I have wondered to myself, “Have I always been this way or has being Tucker’s mom taught me this?”

My mother describes me as being a ‘tiptoe through the tulips child.’  (Which, by the way, I did not know was an actual song until today.  I was searching for an image when I came across the Tiny Tim song…seriously, that’s kind of creepy.)

tiptoe

I still don’t know…but I do know that he has made me a better mother and a better human being.   If you’ve been reading for a while you may have already noticed that I’m fairly calm.  My ‘getting excited’ is more about fresh pie, drinks with friends, and a kissy face message from my husband in the middle of the day. I don’t often get fired up in a negative way.

So, maybe – maybe I did get Tucker on purpose.

I don’t swear at my children.
I don’t call my children names.
I don’t react negatively towards my children.

I don’t yell.

I am not a yeller.  Never have been.  Now, I have yelled – but it has to be pretty extreme for me to get there.  If you’ve heard me yell it’s because I am in extreme duress, sadness, and/or confusion.  I don’t yell to pick up toys, I don’t yell to clean the dishes, I don’t yell because of laundry, I don’t yell to modify behaviors, I don’t yell to turn down the television or get off the xBox.

Why?

I just don’t think anything good ever comes from screaming at the people we love (or anyone else for that matter). I have a calm soul and probably listen to too much Nora Jones.  To me, yelling creates a negative cycle.  I yell to get something done – but he’ll never know the reason why.  I want my children to always know there is a method behind my madness…there is a reason I want them to do something.

Maybe it’s because we need to go somewhere.
Maybe it’s because the ‘thing’ isn’t good for them.
Maybe it’s because I need help.

Unless I talk to them they will never really know the reason.  Why does that matter?  For their children, for their spouses, for the people they meet.  If I yell, it’s the only ‘method’ of discussion my children will learn – and I’m not so much into that. I want them to be better than that…better than yelling.

My mom used to tell me when I babysat, “Make sure you leave that house better than you found it.”  I transferred that advice to life…leaving the world a better, more peaceful place than how you found or experienced it.  Let’s be real though – I also don’t yell because Tucker has autism.  That’s the truth and most other parents of children on the spectrum will recognize that fact.  Yelling never works.  It does, however, cause children to react in one of two ways:

  1. Completely shut down.
  2. Respond in physical violence.

In his younger years he would respond in violence.  He would lash out towards the yeller or throw/break something.  That something wasn’t always soft…I was never on the receiving end – but I did see the effects.

When he comes across a teacher, parent, or coach who yells he often just doesn’t understand.  He will stop listening.  He checks out.  That ‘trusted’ adult has lost him.  Too bad for them.

I just don’t believe that shouting, yelling, or screaming really adds to the success of humanity.

Do I have moments when I want to yell?

Sure – and in this moment I pause.  I take a breath.  I look in his eyes.  Those eyes which are a part of me.

I sit beside him and tell him why I am frustrated, I ask him about his frustration.  We talk about what happened and how WE can do better the next time.  Just like people should when they want to create change.

True change doesn’t come through force…true change does come through thoughtful, calm, engaged discourse.

Day #349 – Avoiding the Outside

More on the auditory language dysfunction (See – Day #333 – Calling Names)  Here is that list again (from http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html.)
_x_ unable to locate the source of a sound
__ difficulty identifying people’s voices
__ difficulty discriminating between sounds/words; i.e., “dare” and “dear”
_x_ difficulty filtering out other sounds while trying to pay attention to one person talking
_x_ bothered by loud, sudden, metallic, or high-pitched sounds
_x_ difficulty attending to, understanding, and remembering what is said or read; often asks for directions to be repeated and may only be able to understand or follow wo sequential directions at a time
_x_ looks at others to/for reassurance before answering
_x_ difficulty putting ideas into words (written or verbal)
_x_ often talks out of turn or “off topic”
_x_ if not understood, has difficulty re-phrasing; may get frustrated, angry, and give up
__ difficulty reading, especially out loud (may also be dyslexic)
_x_ difficulty articulating and speaking clearly
_x_ ability to speak often improves after intense movement

A couple nights ago I was reminded of the “looks at others to/for reassurance before answering” factor.  I was talking to Tucker on the phone and in regular scripting fashion here is what happened…

Me:  “Tell everyone I said hello.”
Him:  “Okay Mom.  I love you.  Good night.”
Me:  “Good night.”
Him:  “Oh wait.  Mom, tell everyone there I said hello.”

Classic.  Classic scripting.

While this is a classic example of scripting it also a part of looking to others for reassurance.  If Tucker is in a new situation he may not always know what to say.  He will use scripting to make sense of a situation.  If the situation doesn’t match something that already exists in his repertoire he will choose something close.

That makes him nervous – so he’ll often look at me while he’s talking to someone else for reassurance.  He’s wondering if he’s saying the right thing, to the right person, in the right situation.

However, as I think about this more I wonder if he’s looking at me to help him find the words or looking at me for approval.  Those are two very different things – one has to do with language, the other situation.

I’m guessing it’s a bit of both.

Situation

First, he’s looking at me for approval that he is ‘on the right track’ with whatever he has to say.  He wants so badly to create relationships and have them be meaningful.  I also chose to write about this today after his first day of school. I asked how it went and he answered, “Not so good.  None of my friends are in my classes.”  I tried to cheer him up and talked about making new friends.  His reply?  “My old friends are fine.  I don’t need new ones.”

Oh boy.

Yes, this is normal middle-school behavior – but for him it’s amplified.  It’s amplified because he has to begin creating relationships all over again and that it incredibly difficult. It’s difficult because he has to figure out how to create new conversation.  Those new conversations have to exist without any relationship history.  He has nothing to ‘go on’ – it’s all him.

Him searching his brain for ‘situations like this.’  It’s not just beginning a new friendship – it’s like learning to communicate all over again.

Language

The other reason he looks to me is that I will help him if he gets stuck.  Sometimes it still takes him just a bit longer to find the words, put them together, and make sense of them.  After being his mother for 13 years I generally know where he is trying to go when he begins talking.

I also help him regulate conversation.  Unfortunately, others don’t always wait for him to get his words out. He can grow increasingly frustrated.  He used to shout his ideas over another; now he’ll simply stop participating in the conversation.

He NEEDS the conversation, so when he is interrupted I will often point the conversation back towards him by saying, “Tucker, you were saying…. We’d like to hear the rest of your thought.”  This gives him the go-ahead and lets the other person politely know that they should wait for him to finish his thought.

As he has matured both of these moments happen less – but they still happen, especially in these new situations.  So, what’s the plan?

A simple, gentle reminder to his teachers – a simple reminder that he may need a little help and some extended patience in these beginning weeks of the school year.  Putting him into small groups with students who will reach out and helping him engage in conversation with those students are two very good strategies to keep him from being on the outside.

The outside is a tough place to be…

conversation

 

Day #348 – Alternatives

I signed a petition last week.

The petition was to advocate that insurance companies cover more natural remedies, homeopathic medicine, or alternative treatments.  Now, I understand the struggle with regulation – that’s a whole other area that would have to be considered.  Regardless, I’m all for alternative medicine.

My good friend has cancer and has had more pharmaceuticals shot into her than well…I don’t know what to compare.  She has tried to battle through some of her pain and symptoms with natural remedies, but has been consistently bombarded by the insurance company/pharmaceutical/physician steam train.

So, last week she decided to stop.

Stop it all.

She’s refusing modern treatments – all they have done up until this point is marginally shrunk her cancer while making her more ill and worsening her quality of life.   She’s now turned to alternative medicines and the power of meditation and prayer.

I love her.  I love that she’s saying, ‘no more,’ and taking control of her own health and well-being.  I’m also fully aware (as is she) what this may mean.

Mortality.  However, this time it’s mortality with a high quality of life prequel.

Yesterday I saw this meme from a walk down autism lane (a FB site).

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In 1976 a baby girl was born who was apparently a legendary projectile vomit’er. This baby girl ended up having a son who was also a projectile vomit’er, his name was Tucker.

We tried formulas, we tried different bottles, we tried limited the ounces…nothing worked.  I could hear his vomit hit the wall as he lay in his crib.  It was excruciating – I knew it had to hurt and be uncomfortable.  It was also just gross- cleaning him, cleaning sheets, cleaning the wall, cleaning the carpet.

He was exhausted and hungry.  I was exhausted and losing my mind.

My mom finally had enough.  She told me that her ‘old time’ doctor told her to give me something called Sweet Acidophilus Milk.  Apparently when milk is pasteurized the acidophilus enzyme is removed.  Acidophilus is a very important enzyme that aids a healthy digestive system.

I asked my Doctor if I could try that.  He appeared mortified at my suggestion and then  advised Zantac.

Zantac for my six-week-old.  Zantac.

I finally decided that it couldn’t  hurt – that’s what my mom gave me and I ended up a healthy, intelligent, independent, somewhat-opinionated woman. Those all sound like characteristics I would like in my child.

At our next appointment I told him Tucker had remarkable improvement.  He had…because I was giving him Sweet Acidophilus Milk.

When Tucker was having troubles ‘going’ our Doc suggested all kinds of medicines.  What finally worked?  Aloe Vera Juice.  Read about that adventure in, The Trouble With Going.

Where is this going?

A very good friend of mine sells Essential Oils and after reading this blog she contacted me about using oils to help Tucker.   I gave her four ‘issues’ that we could use help with:

  • Constipation
  • Increasing focus
  • Constant movement
  • He seems to sleep well – but I wonder if he wiggles all night long.  Is he really getting the rest he needs?

She responded with some research on oil combinations that can help all of these issues.  Some folks think this type of medicine/treatment is ‘voodoo.’  I don’t really get that – it seems putting something in my body that I can’t pronounce is much more ‘voodoo’ than using something made from ‘lavender, ginger, anise, fennel, peppermint, tarragon, lemongrass, patchouli, and juniper.’

So, I’m in.

We tried formulas produced in manufacturing facilities.  They didn’t work.
Sweet Acidophilus worked and it wasn’t a manufactured chemical.

We tried pills and mixes produced in manufacturing facilities.  They didn’t work.
Aloe Vera Juice worked and it wasn’t a manufactured chemical.

I don’t know that this will work…but  I also don’t know that it won’t.

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Do you have experiences with ‘natural’ medicine/healing?  If so, I’d love to hear from you!

Day #347 – The Trouble With Subs, Part 2 of 2

A continuation from yesterday.  The trouble with school substitutes is three-fold.

Surprises are not good.
There is one teacher that holds power in a classroom.
These teachers (like Mrs. H.) have worked at ‘getting’ Tucker.  They know his triggers and they know how to get him back on track.

There is one person in a classroom who has power…the teacher.  If he’s in the library, it’s the librarian.  If he’s in study hall, it’s the study hall supervisor.  He gets the ‘power’ differential.  He respects teacher authority.  However, he does not recognize teacher/student aides as having power in the classroom.  His teachers and I have had several conversations about this and here is what we have decided.

Tucker does not really need academic help – yet, he feels set apart.  He checks in with a Special Education teacher every day…really to just make sure he’s on track and has what he needs to be successful in the day.  If we run into social or academic issues these meetings become more intense.  He recognizes the others students in the special education room – but he does not identify with them.  He also doesn’t totally identify with the general education students.

He’s caught in the middle.

So, when the aide of another student tries to help him in the general education setting he often freaks out.  The teacher is there to help him…not the aide.  That aide should ‘mind their own business with the child they are there for.’  (yes…direct quote)

In these moments his brain spins and rolls trying to understand why someone who is not his teacher would try to help him.

These teachers (like Mrs. H.) have worked at ‘getting’ Tucker.  They know his triggers and they know how to get him back on track.

Need I say more?  Most often substitutes come into a classroom and have no idea what they are getting into.  For instance…

they may not know that Tucker has permission to walk out if it all gets too much
they may not know that Tucker will get up and walk to keep his brain engaged
they may not know that Tucker receives help in certain ways
they may not know that Tucker won’t give eye contact
they may not know that Tucker has a different processing style
they may not know to not raise their voice towards him
they may not know he needs to know the rules
they may not know that they need to wait just a bit longer for him to ask a question
they may not know…well…that Tucker is just Tucker

They probably don’t know any of that – and it’s no fault of their own.  It’s simply reality.

In these moments his brain spins and rolls trying to understand why someone is forcing eye contact or yelling at him to stay in the room, trying to understand the implicit rules or if the teacher just used sarcasm, trying to understand why he can’t get up and why the teacher won’t listen.

Hopefully, it’s no longer difficult to understand why substitutes present a challenge…but this time, thanks to Mrs. H, we have plenty of time to work at getting it right.

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Day #346 – The Trouble With Subs, Part 1 of 2

Not the sandwiches – we have NO problems on that front.

On Day #310 I wrote about Tucker’s struggles with receiving help.  From talking with other ASD parents it seems fairly common. When you add in the nature of adolescence…whew…need I say more?

Tucker actually has a great respect for authority.  His teachers?  No problem.  His Principals?  No problem.  His mother?  No problem.

If Tucker’s teachers are reading this – they know what’s coming.

Tucker struggles with substitutes and teaching aids.  Tucker’s reaction to substitutes is opposite of many children.  He’s NOT thankful for the lack of structure and rules – that is exactly what he needs to succeed.  He always has, and probably always will struggle with substitutes and teaching/student aids.

This became a real issue about two days ago.  I received a message from his Social Studies teacher that she will not be returning this year.  She had a baby during the school year and has decided to take a year off to be with her family.  Goodness…I was so happy for her.

And…so not happy for us.

But…so happy for her.

How to break the news to Tucker.  I decided to just let him read the email.  I could see it in his face as he read…increasing anxiety.  When he finished I simply asked him if he was okay.  He replied, “Mom, Mrs. H. is a good mom.  That doesn’t surprise me…but I’ll miss her a lot.”

Whew…dodged the bullet.  At least for now.

Before I go any further I want to AGAIN write about the teachers we have on our side.  In the midst of this difficult decision she thought about US.  She thought about Tucker.  She knew it wouldn’t be a good situation if he arrived at school on Monday and found out.  She gets it – and for that reason alone…I’m so thankful she was in our life, but so sad we’ve lost her for the year.

But now…onto the problem with substitutes.  With the absence of Mrs. H we will have a substitute.  We’ve been lucky to have these great teachers because most of the time they communicate the use of a substitute directly with Tucker or with me.  I truly believe the issue is like an equilateral triangle.  All issues equally troubling (to Tucker).

Surprises are not good.
There is one teacher that holds power in a classroom.
These teachers (like Mrs. H.) have worked at ‘getting’ Tucker.  They know his triggers and they know how to get him back on track.

Surprise are not good – they never have been.  Remember the time he nearly jumped out of my vehicle because I didn’t tell him we were going to the movie store?  This is real.  I’m serious.  This is real life. Everything planned. Everything structured.  Everything organized.  Everything talked about.  No surprises.  What is a substitute?  A surprise which leads to all types of questions:

Is my teacher okay?
Did something happen in their family?
Did they get into an accident?
Is someone keeping something from me?
When is my teacher coming back?
What is my teacher doing?
Doesn’t my teacher they know I need them?

His brain spins and rolls trying to find meaning to this trusted person’s absence.

Tomorrow?  A continuation on this conversation…

warning-sub-teacher