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I haven’t written since May.  My son is still plodding along, facing his struggles daily.  I am too.

When I started this blog, my altruistic idea was to help promote awareness.  Guess what?  Awareness is pretty vague.  So was I.

I learned a lot by blogging.  There are hundreds of thousands of parents out there who struggle with the day to day challenges of parenting a special needs child.  Most are supportive, encouraging and seek the same from others.  I have made good online friends here and for that I will always be grateful.

I came to learn over the course of blogging that a small minority have agendas that bear no resemblance to my own.  There are cliques, braggers, accusers, drama queens, and those who simply seek the almighty stats, whether by humor and self-deprication or by bullying others.   I think I’d find this breakdown no matter what the genre.

I learned about the spectrum and how diverse it is.  I learned there are thousands of parents struggling with the loss of a child and children who are much higher and lower functioning than my own.  It has been a humbling and enlightening experience.  But it’s been my son who has taught me the most of all.  He has taught me patience, kindness, not to judge others, to find humor in sadness and most of all, he’s taught me about a love that transcends all other loves, that of a parent for her child.

I did not write between then and now, nor say goodbye because I never intended to leave.  I intended to step away, pursue a dream and return.  At the heart of it all, I love to write.  The posts on this blog were hastily scrambled together to meet a self-imposed deadline, without much editing and with much emotion, not my best writing.  Soon, all of this will come down.  I will privatize this blog and put it to bed.

In the end, my son has grown. Like any child, spectrum or not, he’s had his happy and sad, his struggles and achievements. Writing about them had its rewards.  There are stories that will remain untold about our second trip to Hawaii, play dates, video messages and texts with a girlfriend, progress through real (not school based) physical therapy, litigation over an IEP (resulting in a settlement that provided funding our therapies), a new IEP that is garbage and will result in no funding this year (we’re opting to keep him in private school), a new teacher who I’m unsure of yet, echolalia and more echolalia (think: theme song from Green Acres) and more.  Ultimately, I didn’t see how it putting these stories here would help him on his path.  I’m hoping the more thoughtful writing I’ve been doing since April will provide him with some form of income for his future.  Knock.on.wood.

For those of you who are interested, I’ve written the first in a series of possibly five novels which I would characterize as young adult, fantasy, sci-fi, literary fiction.  I, personally, love the world, the characters, and the story of good versus evil.  Maybe someday, the little guy will understand it.  (We’re still struggling with what is good or evil and why we don’t shoot the good guys).  I might finish editing by next February and start the second book soon.  I hope to find a literary agent, without suffering too many rejection letters.  And then, someday, if my writing is as fun for others as it has been for me, there will be a book on the shelves or on a Kindle or Nook, with my name on it.

The most important page of that book will be the dedication to my son who inspired me to find myself, follow my own dreams and make them come true for both of us.  As parents, we have to remember that sometimes the hardest thing to do is continue to live our own lives while we help our children live theirs.

I will miss you all greatly.  You may still hear from me from time to time on Twitter or Facebook.  Thank you for reading here.

Tears of Joy.

Thank you all for your kind words of support last week.

All the weekend, I stewed in the news.  Why in the world would she tell me the story of a boy with a craniopharyngioma if it did not apply in some manner to the symptoms my child was manifesting?

On the same day I got the diagnosis, I called the specialist’s office.  The phone answerer said they had no referral.  I’d have to wait for it to be processed.  She had a stack of them on her desk.  I should call back next week.  In my mind: he has a tumor and you want me to call back?  If I argue, will I look nuts?  Will she dub me a hard case?  Will she simply tell me to get lost and find another doctor?  I’m too much trouble?  So, I shut my mouth and tell myself I will call back later.

Friday comes.  I don’t call in the morning.  I wait.  Should I call?  Will they think I’m crazy?  Causing trouble?  I can wait.  It’s just Friday.  I’ll wait it out over the weekend.  Over the weekend, he says his eyes hurt.  He cries himself to sleep all weekend saying his head and eyes hurt.  Nose bleeds in his sleep.  My fear mounts.

By Monday morning, I’m good and upset.  Why did I let Friday go by without pushing some doctor for answers.  My son is hiding his head in my chest as I take him to the school playground for the morning drop off at school.

I call the referring doctor.  Her office says they have not sorted through the last week’s referrals.  (Really?!)  I should call back later.  Look, I tell them, my pediatrician said “craniopharyngioma” and I’m freaking out.  The phone answerer says that I should have my pediatrician call the specialist and tell her it is an urgent referral.

I call my pediatrician’s office.  My pediatrician works only on Tuesday and Thursday.  They will give the message to the doctor on duty.  Maybe she’ll get to it, or my pediatrician will do it on Tuesday.  They will leave her a message.  I hear nothing.

How about if I call the neurologist?  Yes, our neurologist has an old MRI.  He can read the MRI and tell me if he sees any signs of a tumor! I leave a message. There is a nice nurse and a not-so-nice nurse.  Guess who calls me back?  Yes.  The not-so-nice nurse.  I tell her about the craniopharyngioma and how I want the doctor to read the MRI and tell me there is no tumor on it.

She says, “We didn’t refer you to Dr. S because of a tumor….” I told her I got it from my pediatrician.  She cut me off and said, “Well, if you got the diagnosis from her, you’ll have to call her office.”

Are you kidding me at this point?  I wanted to tell her that I’m not an idiot.  I know that my pediatrician is making a referral because she is not an expert in the area.  My neurologist is an expert.  I want him to read it.  Is it really that hard?  She says she will give him the message. Guess what?  Neither he nor anyone from his office ever called me back.

Meanwhile, my pediatrician did not call back on Monday, either.  My son cries himself to sleep Monday night as well.  Another bloody nose.  Now, his behavior is spiking.  He is melting down after baths, when I comb his hair, in the last hour before bed.

Tuesday morning rolls around. By this time, let me give you a little scenario of what kind of crazy is running through my head at this point.

My son has cried himself to sleep complaining of head pain every night since a week ago.  He’s hit himself in the eyes.  He cannot read more than three words in a sentence without looking away and then it takes 30-90 seconds to get him to read more.  The teacher says he’s bending over his book, practically to the floor in class.  The tutor pulled him out of the classroom to take his spelling test because he was rubbing his eyes.  He’s coincidentally had a bloody nose all week and soaked his pillowcase with blood for five days in a row, waking with dried blood on his nose.  He’s asking me to read in his place.  He’s shoving his head with deep pressure in my chest, stomach, arms and side.  He’s constantly rubbing his eyes.  

At this point, I’ve come to imagine him going through surgery to have a tumor removed from his brain.  I’ve imagined the worst.  I’ve planned how I will commit suicide if something happens to him.  I cry at stop lights.  I feel like I’m in a living nightmare.  No one is responding.  No one is addressing the issue.  

I call the specialist’s office at 2 p.m. on Tuesday afternoon.  The phone answerer says she cannot find our referral.  Again, I tell her about the tumor.  She places me on hold.  After about 3 minutes, she comes back and has found the referral.  She says she will set my son for the first available appointment.

September 12 at 1:30.

No kidding.

I burst into tears.  Again, she says to get the pediatrician to call the doctor and they will move my son up on the appointment list.  I call the pediatrician’s office.  The woman who answers does not speak English.  She misspells my name.  I shout the correct spelling through tears.  She puts me on hold.  A man picks up.  He says, “I know how you feel,”  I cut him off and clearly state:  “No, I do not think you do.”  He says they can get my son in to another specialist or the doctor will call this one.  Someone will call me back.  “When?” I ask.  This afternoon or tomorrow.

Another day with no response.

The following morning, I’m getting my morning coffee.  At this point, I’m exhausted.  I’ve forgotten things like my son’s water bottle and syringe for his medicine at home 30 miles away and have to drive an extra 60 to get it to him at school.  The phone rings.

It’s my pediatrician.  My pediatrician says she’s sorry.  She says she should have never told me a story she found interesting but had nothing to do with my son.

Now, believe it or not, I welcomed this call.  I prayed for this call.  I prayed that she would call and tell me she did not think he had a tumor.  I prayed for the worst thing that happens to be that my pediatrician made a mistake in telling me a story that does not relate to my son.

She prescribes allergy eye drops and tells me to take him to see an optometrist.  My optometrist is a long time family friend.  I should have gone to him from the beginning.  We saw him on Thursday.  He’s gentle, friendly,  and kind. He dilated my son’s eyes. My son has a healthy optic nerve with no damage – no impingement.  He makes phone calls to the specialist and the pediatrician.  He soothes my nerves.  My son needs glasses because he is far-sighted.  He could still have an issue but it’s the neurologist who will make that call when we see him in July.

Learning to wear glasses is not going to be easy.

Thank you.  All your prayers worked.  And now all I have to cry are tears of joy.

Joe Cool after eye dilation.

Eye Worry.

On Monday, I posted about our troubles with reading.  And if you read here, you know me.  I try to always find a silver lining.  But sometimes you can’t.  Well, maybe you could but it’d be a bit of bull…

Reading troubles multiplied by a millionfold on Tuesday night.

Tuesday night was the last straw.  He’d had seven hours of school, followed by 3/4 of an hour of PT, and an hour of OT.   Then there was the half hour drive home to discover he had to read 10 pages for homework.  He ate dinner and had a few minutes of a break.  Then, we sat down to get through it.

He stopped reading every two or three words.  He looked away.  He sat there.  He simply would not say.the.word in front of him.  I pushed him.  I wondered what was going on.  He held his head on the sides of his eyes.  He cried.  He rubbed his eyes and said they hurt.

This was the same thing he did Tuesday night. He has done it on and off for the whole school year.

I wondered if he couldn’t see clearly.  My husband is far-sighted (he can’t see things up close).  I am near-sighted (can’t see far away).  We tried both my glasses and my husband’s glasses on him.  He seemed to find mine slightly helpful, but pulled them right off.

Now, I’m in mild worry mode.  You know the mode?  You start imagining there’s something worse than a case of a tired child who doesn’t want to do homework.  But at this point, I’m thinking, maybe glasses.  That wouldn’t be so bad.  I wear those…

But he continued to complain that his eyes hurt.  Then, he slapped his eyes Tuesday night, with his hands.  Not hard, but with deep pressure.  He asked me to read, instead.  And he cried.

I held him.  We put the book away.  I got him ready for bed and gave him Children’s Tylenol.  He was fussy.  Then, he had a bloody nose.  I cleaned him up, gave him his breathing treatment on a nebulizer, and he finally fell asleep.

As the mom of a child on the spectrum, there are all the usual worries as a mom.  Then, there are worries about getting:

to this or that therapy,

to the restroom,

through general anesthesia for an MRI of the brain,

through general anesthesia for dental surgery at age 6,

through parking lots where he may dart when he’s frightened by noises,

to therapy to desensitize him to sounds that cause himself to do dangerous things like running in parking lots… the list goes on.

So truthfully? I’ve been brushing this “eye” thing aside for quite some time.  It’s times like these that I curse myself.  Who gave me “authority” to brush anything aside?  Of course, as I’m doing it, I’m not thinking how much more I know than my son.  I’m worried that I’m over-worried .  Does that make sense?

So, when he tells me that his head hurts, or that his eyes hurt, and he rubs them, or says he can’t read his homework, I give him a break, like he’s just a perfectly regular healthy kid. Then, I give him some Children’s Tylenol and we go back at it, because, I assume he’s just tired.  He does ten times the work that an average child does just to keep up with that average child.  I gloss over the hurt.

And, though fleetingly it crosses my mind that he might have something more serious than a case of the “tireds”, I don’t want to go there.  But when my kid slaps himself in the eyes and cries, I finally take notice.

The next day, I made the usual calls – to every medical provider.  An appointment was set with the pediatrician, a woman who has know him since he was 7 days old.

He was so good.  It was the best visit we ever had with her.  He answered her questions.  He paid attention.  He let her examine his eyes and his ears (unheard of – I tell you!).  She let him examine the instruments before she used them.

And then, we talked.  We talked about eye exams and optometry.  We talked of getting glasses.  And we talked about the symptoms of a craniopharyngioma. And I freaked out.

A craniopharyngioma is a noncancerous tumor that is centered around the pituitary gland.  It is a slow growing, rare tumor that occurs in children mostly.  She told me she didn’t think my son had one, but she told me about four years ago that he probably did not have autism when she made that referral…

She told me about a little boy who was about my son’s age when he began to say that he couldn’t read his homework.   I said I’d thought he was able to see just fine when he was typing search terms for a YouTube search, or playing on his iPad but not so well when it came time for homework reading, which made me wonder whether he was just “playing me”.  She said this other little boy (age 7, like my son is about to be) also had problems reading his homework, and his parents felt the same way – and both those parents were physicians.

The way she explained it, the tumor presses on the optic area (remember – this is me repeating as mom – not a doctor!) which causes a kind of binocular, tunnel vision effect where if the child concentrates hard, he can still see enough to make out a few words and read.  And this is what my son’s been doing. He’s reading two or three words and looking away.

So we are off to see, yet another specialist, to see about yet another diagnosis.  And I’m watering my keyboard because I’m afraid, and it’s just too much.  He’s only just about to turn 7 years old.  It’s not fair.  It’s not right.  But that’s just life, isn’t it?

I did watch him closely last night as he struggled again with his reader.  I stopped him every paragraph and asked if he could see the words.  He answered “yes.”  I asked him if he couldn’t see the words.  He said “could see the words“.  I hope and pray it is just eye strain and an issue of glasses. . .

Will you pray for my little boy with me?

The Tale of Two Dogs…

Every single school night, we have reading homework.  And, yes, I mean “we”.  I have to listen to him read, correct him, and make sure he comprehends what he reads.  This is a challenge.  I never know how much of it he gets.

Before he started first grade and learned his phonics, he was much more confident in what he read and how he read it.  Since first grade, his reading skill has gone backward.  He has lost that sense of confidence, gets easily distracted and, by using phonics “skills” mispronounces tons of words that I know he knows.  Sometimes, he’ll read at a whisper and when I prompt him to speak up, he’ll scream the next sentence or phrase and stop.  It’s like he needs prompting to get through every sentence.

As you may gather, reading is less pleasurable than it should be.  I’ve tried lots of methods to recapture his desire to read.  We’ve recently acquired library cards and read books together from the library.  This is a positive.  But not every library book I check out is a good one.  (In fact, a lot of children’s books are really lame, I’ve noticed…)

There are always mixed positives and negatives to balance things out.  He’s back into recycling his love of all things Solar System, so I’m stepping on planet books every few inches around the house like stepping stones.  You might think this would be a positive… Rather than read them though, he opens to his favorite page, always the one that depicts all the planets in a row, and goes straight to echo-land… “Let’s point to them!” he excitedly commands, and loving the list, rattles off the names of each planet, always starting with the Sun, and clarifying that it is a star, and that we don’t live on it…

I dread this.

Why, you ask?  He has been able to recite the planets from the time he was 2 years old.  He knows this info.  He uses this mantra to set himself into a meltdown.  Now that he has drug out this old past time, the accompanying meltdown has already come as an added ‘feature’ a couple nights when he’s been tired.

What he does is very rigid.  He must start with the Sun.  If we start anywhere else, meltdown.  If we forget to count the Earth’s moon (even if it’s not shown in a picture- and goodness help me if it had carried to all the moons…), meltdown.  If Pluto is missing because it’s now classified as a dwarf planet, meltdown…

When I try to read him new information or try to have him read new information, he goes back to the same old ground.  We struggle.  Sometimes, I win.  Sometimes he wins – but we both lose, because this is dangerous territory.  I’m quite sure an ABA program would be appropriate in this arena but, alas, we don’t have a lot of ABA sessions right now and getting any kind of response from the two sessions we have a week is questionable at best.

But despite all our struggles with reading and reading homework, there are wonderful, beautiful moments.  Moments that teach me that autism is not always caught up in reading and reading assignments.

The best example I can give you came recently, with the story of “Two Dogs” in his school reader.  Because we’ve had so much distraction and so little comprehension recently, I have taken to using an old ABA program called, “Tell me about the picture” at the beginning of each reading assignment.  Luckily, in his reader, there seems to always be a picture that correlates with the story.  I ask the little guy to tell me three things about the picture.  Here is the picture from Two Dogs:

This is what he tells me.  “There are two dogs.  One dog is white and the other one is brown.”

He reads the story to me.  It is a tale about how one dog, Jack, is clean, well-fed, bathed and has a nice place to sleep.  His master takes great care of him.  The other dog, Jip, is dirty, gets fed only sporadically, does not get bathed and sleeps wherever he can, including out in the cold.  The story asks whether a master who treats his dog poorly is likely to treat people poorly as well.

The little guy paid a lot of attention to this story.  It moved him.  He was upset about Jip’s plight.  The first thing he did when the story was over was go back to the picture and say, “Mommy, let’s delete the dirt!”  “Let’s… we can… mommy, can we take care of Jip?”

He surprises me and then I shouldn’t be surprised.  There are stories that capture all of us, depending upon our interests and stories that bore us all too.  I should not be surprised it’s like this for my son either.  He doesn’t answer questions about stories involving things that don’t capture his attention.  But, as empathetic as he is, he did not want this dog to suffer.  He wanted to clean him off and make him happy.

So, what’s the point?  I guess that, at least in our house, sometimes autism weaves its way into life, like with the planet books, and sometimes, it doesn’t.  Sometimes, he’s just a kid with a lot of heart.  And I feel like the luckiest mommy in the world…

My little boy going to school…

Are You a True Believer? OT, One-Handed Scoopers, & Naked Emperors…

Sometimes, I get so caught up in just getting to the appointments, that I forget to evaluate how things are working to help my child.  I wonder what does him the most good and lately, I’ve been wondering what does any good at all. And I’m wondering who to believe, who to trust, and how to allocate that very precious resource called “time”…

Some of you may have seen my post on Wednesday about the toilet plungers used by our Occupational Therapist.  It was a funny little post about how the plungers help him use his muscles to pull himself around on a scooter board.  But underlying the funny, is the reality – Is OT really doing him any good?

Truth be told, ever since we began OT, I felt ill at ease with it as a concept.  I have tried for -what has it been – about three years? – to “get with it”, to read up on sensory integration, to follow the crowd – to see the emperor’s new clothes.  But, if I’m being honest here – OT stands naked before me – I’ve seen nothing that indicates anything I’d really tie to progress through OT.  And, look, I’m not saying, I’m right.  I’m not saying that OT is not a good fit for someone else.  I just don’t see it.

I’d like to believe the “brushing and joint compression” routine calms and “organizes” him and I’ve seen him calm down from crying after I do it, but is that really why he calms down?  Or is it the effect of massaging type activity on his arms and legs?  I hate to admit this but – shhh – I’m not a true believer in the power of OT.

I really hesitate to say this, especially since I think our OT is one of the nicest people in the world.  And I freely admit that she’s told me all along that once a week sessions for my son are simply not going to do it – I will have to work with him daily on exercises and instructions she gives me too.  Again, if I’m being honest – I don’t work with him daily.  I’m lucky if I work with him once a week on this stuff.

I keep going to OT, partly because it’s what autism moms do.  We all take our kids to OT. It’s often part of the school district’s IEP prescription and when we squeeze a paid service out of that turnip of a school district, by George, we’re gonna use it!  OT is a standard given in that IEP prescription for us, and we’re using it.  But I’m left questioning its value.

Here’s the deal.

My little guy took swimming lessons from last October that just ended last month. During the course of that seven months, he has been swimming – but he’s been doing it in an unconventional way.  Standard swimming involves kicking the legs and “scooping” in the water with right and left arms in a 360 rotational motion.  My kid has been “scooping” only with his right arm, or with his right arm and one-scooping on his left, followed with a half scoop on the left or no left arm motion at all.

I complained about this lack of motion. Eventually, the OT checked out his left arm.  She said she felt “clicking” and his rhomboid and pectoral muscles were very weak on the left.  She recommended we see a physical therapist.  Upon her pronouncement, I obtained a referral and then sought out a physical therapist.

It finally dawned on me that two buildings over from where I work is a physical therapist who I’ve known for years.  He originally worked with stroke victims so I never thought about him as seeing children. I figured, maybe, just as a favor, he could check out my son and let me know what he thinks.  He did.

I went in with my son and from the first minute or two, he just kept repeating the same word to me – “hypotonia”.  Low muscle tone.  “But what about the clicking?” I asked. “It’s not clicking.  It’s hypotonia,”  he responded.  He says he works with lots of children now, though he originally started out as a stroke rehab specialist.  According to him, my son needs to build up his muscle tone.  He says he can do it but he needs to have PT at least three times a week to start, decreasing to twice a week later on.

He told me that it’s not just his left arm.  It’s his whole body.  And that if left unattended to, he could develop scoliosis as he gets older.  I got the distinct impression he was unimpressed by any of my son’s providers for failing to refer my son earlier for physical therapy.  I admit some culpability here.  I had a referral early on for physical therapy from our neurologist and I simply did not understand the importance of physical therapy and never worked it into the schedule.

Certainly, it is no excuse, but, why didn’t any of my providers follow up with me?  Tell me the importance of PT?  Is it because PT is not very important either?  Is it because the whole cast of characters that treat autism don’t know what each other are doing?  Foolishly, I was a lemming.  I didn’t hear the other autism moms saying how they were taking their kids to physical therapy every week, so I didn’t push it.  I only heard the mantra of speech and OT, speech and OT.  You know, the one that’s drilled into us as autism moms at IEPs where the school district sets the stage by offering that service.  And stupidly, since I didn’t hear PT from other moms, I thought it wasn’t that important.

Will I end up believing the naked concept of OT is standing next to the naked concept of PT?  Or will this route lead to tangible progress?  Stay tuned…

Almost Wordless Wednesday… Taking the Plunge at O.T.

He’s on a scooter board and I’m told this is a way to build his “core strength”…

 

I was also told the plungers are brand new and have never been used.

I hope so…

Happy Wednesday!

An Explanation and a Little Empathy Story…

It’s been a little over 30 days since I posted here.  As some of you may realize, I do have a law practice, though mostly, it is my partner/husband who runs it.  Long ago, when I was about 6 months into writing here, I took a break to try one of the largest cases of my career and it was in trial for the entire summer.  I lost that case and my belief in the system of justice, never mind, my abilities as an advocate…  That was a hard loss.

Now, I am again preparing for a trial that is to start in early June.  I didn’t want to say anything here because (1) I am superstitious and (2) I don’t want to again put myself in a position to tell you about another loss.  But here I am.  I thought I owed you an explanation for my silence.  

In the midst of all the preparation, I’ve had a sick kid (sinus infection then double-whammied with hand-foot-mouth disease the same week) and a mom who’s managed two back-to-back ER visits over the weekend. Let me just say that the sandwich generation is hard.  

I wish I could get around to read all your blog posts and stay in touch on Facebook and prepare for trial, train a new associate and take care of my son, but I just can’t.  I don’t intend to allow this blog to become cluttered with weeds but I cannot maintain a regular schedule at present.  I will try to visit when I can, like what I can in the few stolen moments I get on Facebook, and know that I do care and love to watch your children grow right alongside by own child.  

With that said, I will leave you with this quick story about empathy…

My son loves everyone and everything.  No – literally, he does.  Here’s an example of a daily exchange we have:

“Mommy, do you love your nite-nite doll?”

“I don’t know T, do you?”

“Yes!  Mommy, does your nite-nite doll love you?”  (Pronouns people…  he means does “my” “love me”)

“Of course.  Everyone loves you,”  I reply.

This conversation occurs not just with his Kai-Lan nite-nite doll, but with his Scout nite-nite doll, Sheldon the class turtle, James Bond (don’t ask… well, okay – he found a car with James Bond music on it so now the car is James Bond…), and many other inanimate objects.  In fact, when I think about it, it’s mostly inanimate objects that are the subjects of these requests for assurances of love.

And, yes, perhaps, in response, I exaggerate about who actually “loves” my son, but so what?  I don’t think he needs to know the harsh realities of the world at age 6.  The world is a lot more pleasant place when everyone loves each other anyway, so I encourage that belief.

Now despite all this love, sometimes, I cry.  I may cry because I ate too many donuts or because all my blog readers have gone away, or I stubbed my toe on yet another Hot Wheels toy.  Regardless of the ‘def-con’ level of my tears, the little guy nearly always comes running over, practically tackles me with hugs and kisses and says, “I love you mommy!” to try to cheer me up.

And I have to admit.  This is some pretty special attention.  It always and unfailingly cheers me up.

In ABA, there is this concept called “generalizing”.  It means that my son has consistently gained some skill, whether it be putting on his own shirt, passing a ball, or responding to a greeting.  He’s perfected this skill to a degree where he’s – what they call, “mastered” the skill, doing it at a 95-100 percent of the times it’s called for.  The next step is to generalize that skill to natural circumstances when it comes up.  Sometimes, it works.  Sometimes, it doesn’t.

The little guy’s empathy has never been the subject of an ABA program.  It’s never been an issue.  I never stopped to think whether his unending empathy for his mom would ever be seen in a much less natural environment, like school.  You know, school?  That place where he rarely says “hi” back to his classmates unless prompted?  That place where he has to watch videos of the kids’ names to recognize who they are?  Well, it seems my little boy with autism does not need to “learn” empathy.  He feels it just when it’s needed the most.  

Recently, T and his classmates were cleaning up at the end of the school day.  All of them have bath mats for rugs they use when they have to do tasks in pairs on the floor.  They sit on these rugs on their chairs in class.  T was folding up his mat to put it away when a classmate – who we will call “Sally” – was rushing by behind him, not looking where she was going and,  you guessed it – Sally tripped and fell flat on her face behind T.

According to reliable sources (i.e., his tutor), T immediately turned around, went straight down to the floor where she was crying and hugged her.  He asked, “Are you alright, Sally?” and before waiting for a reply, he added, “I love you Sally!”  Apparently, the teacher and the tutor could not believe how full of compassion the little guy was.  Sally also was surprised.  Her response?  “I’m okay.  I love you too, T.”

How’s that for empathy?

Thanks for being patient with me readers.  I’ll be back on a more regular basis when things calm down.

Winds [and] Change…

It hasn’t been windy here in a long time.  Or at least, I haven’t noticed the wind.  Wind is a funny thing.  Have you ever tried to describe the rapid movement of air to a child, as wind?  What’s blowing?  Well, it’s air.  You can’t see it but it’s there and it’s moving.

It’s a beautiful day outside.  Sunny, bright.  Absent the bowing of a branch, you’d merely see a tree against bright blue sky.  But if you walked out there, you’d feel it.  You’d know it’s icy.

What’s that they say?  Winds of change, right?  It’s been four full days since I added some bright blue to my otherwise, nondescript hair, again.  It’s been blown all about.  Until someone makes a comment, I often forget, it’s there.  But the reminders come from strangers.  I cannot count them anymore.  They mention my hair and I impart the reason for it.

That part of my heart that is wrapped around autism is, like the wind, usually invisible to the outside world.  Now, the icy blue flecks of hair, the beautiful puzzle piece pendant I acquired, and my voice, work together to open my heart to all who comment or ask.

I’d forgotten.

In a year, I’d forgotten the importance of my little corner of the world.  How abysmally self-centered of me to believe, even for a second, that the world does not need us to continue to spread the word of what autism is, how it affects our daily lives, what it’s like.  The potential for interest and understanding that awaits us opening our hearts is there if we let it be.

In the past year, I’d come to think I knew all the same people and that there were not enough “new” people in my life to justify continuing down the road of “awareness” but for consistency, for my son, I did it again.  I was so wrong about who knows what.

I have realized now, that I see an average of 20-25 people a day who are ‘new’ to me.  People at my coffee shop, at my son’s school, in my office, at the mall, buying a Happy Meal, getting gasoline, at the grocery store.  All of them start the conversation with my hair.  All have left those conversations knowing a little more about autism.  Knowing something new – what to look for – what’s different, the same – what’s available to diagnose, to aid, and how I have come to live the respect and love for a child with autism.

I was sad when I last wrote here because we’re going through a period of change.  Change happens all the time for everyone.  It’s part of life.  Some appear to accept it easier than others.  Autism lends itself to a deep love of familiarity and routine.  It calms the nerves, lessens the anxiety.  For me too, routine is soothing and adding a little dose of blue to my hair would be change.  I need routine, to remember all I have to do for my son, to keep his meds in the right dose at the right time, to get him to bed so he’s not overtired, to wake him in time for school… don’t rock the boat.

But as time passes, change comes with growth.  Size 6 has become size 7, 12.5 shoes are now 13.5 or 1’s.  Yes, he’s gained about six pounds and grown over an inch and a quarter.  Medication were changed.  Finding the right fit in clothes for us also means finding the right fit of medication.

We’ve found both now.  The rather large chasm in the road has sealed itself, and we’ve walked right over it as though it was a mere bump along our path.

The most beautiful part of the view now is the detail with which my son is now seeing the world.

Between his birth and two weeks ago, my son had not so much as ever mentioned a smell in his life.  You will see tons of old posts where I say he is “hyposensitive” to smell.  But now?  Yesterday, as we merged onto the freeway, behind a diesel truck, he said, “Something smells bad, Mommy!”  For the first time, I got to explain that the smell was diesel fuel.  Was he hyposensitive or was there a loss of connection between the smell and the communication of his perception of the smell?  Either way, it’s connecting now.  And that’s huge.

As we drove further down the road, he played with his “Wheels on the Bus” app on his iPad.  Yes, it is intended for smaller children and he’s nearly done with first grade.  And yes, it does drive me crazy.  (I find myself alone, humming it while washing dishes).  But then he described for me, yesterday, the “froggy-baker” (he hides under a chef’s hat) at the beginning of the app.  “It’s a blue frog and it has a king’s crown and little hearts all around his head.”  He’s seen it hundreds of times, but he’s never described it before, and never with detail, without prompting of any kind other than, “What color is froggy-baker?”

He’s giving me sharper images.  It’s me that ends up learning.  I can see the branches bend as the wind blows, not just a picture of a tree and clear skies.

I think what I’ve learned, most of all in the last week, is that I’ll never be done learning and when I am?  It’ll be because I refused to open my eyes to the possibility of change.

The Clouds of April.

The clouds have been more than intermittent.  Some days, I can’t see the sun at all.  It rains off and on.  The windshield on my car is dirty and full of spots that obscure my vision.  I can’t wash them off with a spray of washer fluid because that is broken on my car.  So when I try to wash away the dirt, it smears, and I hear that scraping sound that sends chills down my spine like fingers on a chalkboard.  One minute I’m freezing.  The next it’s hot.

With the humidity from the spring rains, the car smells like urine.  Yes, you read that right. That’s what happens when there is a seizure.  I’ve scrubbed the floor but the smell has not gone away.  It’s okay when it’s not stuffy outside or hot.  But when it’s either of those, which is most of the time these days, then I’m treated to a reminder about differences.

Our fairly new senior tutor announced that she believes she’s mastered compliance with my son, this week.  This means she believes he is listening to her instructions. She offered to try to generalize this feat in different environments.  Ride around with us on errands to check that he listens to her other than in the environment he’s used to “complying” in.  I put her off it, saying we had no errands to run.  The reality is that I don’t want her in my car, smelling urine as we ride around in the humidity and heat.  And she is our tutor.  She knows and understands.  But regardless of “knowing” and “understanding”, how can I offer a ride to anyone when my vehicle smells like urine, right?  It’s a bit depressing. Long after ideas, plans, and goals are discussed and cerebral loftiness is praised and honored, my carpet still tells a different story.  The parts no one wants to discuss.  The stains that don’t go away.

I could pretend our autism is just the beauty in my son’s eyelashes, his gentle demeanor, his sweet smile and kindness.  But the reality is that it’s just as much the incontinence, the seizures, the inappropriate screaming he does when he is excited by a game, the delays or absences in a response back when I talk to him.  It’s really all of it.  And lately, the clouds obscure my skies.  The windshield of my mind is not clear and I cannot wash away the parts I don’t want to see.

I’m not writing a fairy tale.  Once upon a time, I started this blog with some ridiculous idea that I could bring awareness to people who don’t know about autism.  That was at a time when autism, as I knew it, was a fledgling, sprout, fresh from a seed, I didn’t recognize.  When one Googles autism, you get nearly 12 million results in the blink of an eye.  Who is going to come here to get “aware”?

I’ve been writing for two years.  I’ve been criticized, praised, sympathized with, empathized with, pitied, hated and ignored.  Everyone affected by autism, has an opinion.  Every opinion is different, just as every autism diagnosis is different.  I’m different now too.

I think it will always be important to spread awareness to those who have no knowledge of autism.  I find that still every day of every year.  There are millions of people who have no clue what autism is or how it affects those who have it or live with it.  There are people who are rude, uncaring, caring, concerned, misinformed, trying to be helpful, affected by it but in different ways from me, and there’s me and my son.  If just one more person nurtures awareness like a seedling and gives that seedling respect it will grow into understanding instead of hate.  One more ally – one less enemy.

I’m tired.  Tired of petty fights within a community that is supposed to be united.  Tired of hearing how we should view organizations that purport to represent those we love with autism.  Tired of having my identity be that chick who talks about autism all the time.

Spring Break is over.  My son returns to school.  What have I learned this Spring Break?  Nothing.  My son is still different than all the other kids.  He doesn’t talk when spoken to.  When he does talk, he’s obsessing on a subject in which only he shows interest.  He’s playing with toys labeled for 9-36 month old children.  It’s no wonder I cannot throw away or give away old toys.  He’s still trying to figure out the meaning for the ones he received six years ago.

I love him.  He loves me.  We live a different life.  One currently involving a lot of blood draws, medication changes, regressive behavior, fear for me of what the future holds.  We all go through ups and downs, sunny weather and chilly days.  As we head into the rainy month of Autism Awareness, I see a lot of clouds.  But I have no choice but to look past all of that, and with my blue lightbulbs and blue hair, share what I know to get a new mom, a new family, early intervention, to recognize signs and find resources in real life and not here in internet space, because regardless of how I feel, most people still need the news of what autism is and how to help children get the therapies, resources, and education to which they are entitled to make their lives easier.  It still needs doing and I’m one of the ones destined to do it.  So I will be blue this month, just so you know.

“I Don’t Want Autism.”

In early January, the results were back.  There was increased abnormal activity in the left temporal lobe.  The report called it “stable abnormal activity” which seemed just the epitome of ironic phrases to me.

The first EEG showed left temporal lobe seizures.  The second EEG showed no seizures on the left.  The most recent, in January, showed a reemergence of left temporal lobe seizures again.

Since his seizures are “silent”, I’m left assessing things as an “outsider”.  I see things that I can chalk up as silly behavior or as warning signs.  Underlying it all, I have this constant fear over what makes him do some of the things he does.  When he laughs hysterically, with no external cue, or when I must repeat the same question over fifteen minutes with no response, I worry whether he is having a seizure or how extensive the damage from it may be.

But even if I did know, so what?  It’s not like I can reach into the medicine cabinet and give him a bandaid to stop or fix it.

When I was younger, I had a persistent nightmare.  I’d need to dial a telephone number because there was an emergency.  No matter how hard I tried I never could get through.  I supposed back then that making a call in time, could always solve a problem.  But that was wrong.  And here I am.  I call the neurologist and explain how my son’s behavior says something is worsening – but my call can’t fix it.  I can’t stop the electrical battering to my child…

I deeply love a child whose level of disability rises and falls unpredictably.  One minute he’s winning the class spelling bee, playing with friends, hugging his mama.  The next, he is completely nonresponsive to everyone, or laughing hysterically like he’s being tickled to death.

At minimum, I’m on yellow alert.

A week ago, I took him to school.  A classmate asked him to play and the two of them wandered away.  I’m on Cloud 9, as I’m trying to keep track of him through the crowd.  But then his teacher approaches.  She pokes a hole in my cloud.  He’s taken another reading test, she says, and he tested at a 9 month level.  I don’t understand what that means.  She says, “Don’t be shocked, when you see the results,” “He must’ve been having an off-day,” and “I’m going to let him take it over again.”

This had been his strength.  When he started the school year, he tested in the highest five percent of all kids who took the test, across the country.  Now?  Not even close.  I call the ABA staff.  The new senior tutor agrees to be the one who supervises the retest.  He takes it over.  He doesn’t do much better.

The problems are quite defined.  There’s just no real answer.  No solution – no fix.

He’s crashing.  I’m dialing.  The neurologist cuts a dose of one med, orders another blood draw to check the levels of medication in his blood.  His ABA team talks -formulates a plan.  But I’m tired.  There’s always a “plan”.

I want answers.  I want it fixed.   Too bad for both of us.  And lately, I’ve seen faces, relatives, acquaintances, who give me looks of pity.  I’d rather they despised me than pitied me.  So, I just have to take it.  From both ends.  I call, let the “team” speculate and experiment on my son… and I have to accept that.

I’ve never accepted that.  I doubt I ever will.  I know there has to be a way and someday it will be found for someone.

I buy reading comprehension books.  He reads a paragraph and responds to the multiple choice questions perfectly without a prompt.  I have him do an online spelling test.  He gets 100 percent on his first try.

Then, we sit back to read “Owl at Home”.  The first story is about winter knocking at Owl’s door.  He has no clue what “winter” is.  He’s nearly 7 years old.  Even after I explain it to him, he tells me you wear shorts in the winter.  After five minutes, he is gone, though sitting right next to me.  I tell him to go play.  I head back to buy new materials to teach him about the seasons.

The other night, he was struggling to get through his homework after school and OT testing.  He wanted to give up.  I told him that a lot of times, he has to work harder than other kids because he has autism.  There was a pause, and then he said, very clearly, “I don’t want autism.”  

I answered, “Autism is not just about things being hard – it makes you who you are – you’re sweet, and good, and everyone loves you, and part of all that good is autism too.”  He was quiet, and gave me his tilt of the head, as though he was weighing what I said.  Then, his lips began to move with no words.  He started to echo.

And before I knew it, he was gone again- even before his body got up and he ran off to play.