“I want Mommy to get your….”  The last part of the sentence trails off as he opens the heavy drawer and finds what he was looking for himself.  A different Wii remote controller, in this instance.  He has become more independent as he entered the age of six.

Sometimes, there are moments he passes for neurotypical.  Is that something I strive for or am proud of?  No.  But daily, it’s something that happens.  One minute he’s any six year old boy.  The next I am reminded how he is different.  It’s like that all day, every day.  I wonder if it will ever change, or if this is it.  Not because I’d prefer one over the other.  The fact is that just as I settle into one understanding, I’m moved in a different direction.

Just a kid in class.

Add to that, when he is acting as any other six year old, I expect him to “behave” accordingly. There are limits on what is acceptable and what is not.  Where those lines in the sand are drawn depends on his abilities and disabilities, and therein lies my quandary.  Where do I set the limits when the borders keep moving?

In a moment, he is Gill Grunt, playing Skylanders, racking up points, unlocking gates, and amazing me with his ability.  In the next moment, he is toe-walking and screaming so loud he could shatter glass, as he unlocks new secrets to his video game.  Yep.  That’s definitely different.  I can see how he could make friends in one minute and freak them out the next.

No matter what a “neuro-diverse” movement wants to advocate for, in terms of acceptance for adults, my son is six.  The peers he will come in contact with, as he heads toward first grade at a new school, will be six.  Whatever they have or have not learned at home will be what they take into any potential relationship with my son.  And if there is ignorance and intolerance in their home, they will use that in interacting or not with my child.

My goal for my child is to NOT be emotionally scarred by a child who does not understand, accept, or attempt to do either, with my son.  While I can advocate for understanding and acceptance of differences through education with organizations such as A Touch of Understanding, my son still needs to learn blending, reacting, acting, and behaving in a socially acceptable manner while retaining his self-esteem -tricky.  But he’s much less likely to be emotionally abused or scarred if he learns all that.  And that is why I appreciate and use ABA as much as he can tolerate a day.

Last year, I was warned by ABA that my son was not emotionally mature enough to make it through kindergarten.  I was advised that he be held back a year.  I was having none of that.  I demanded placing my son in a neurotypical kindergarten with a full-time ABA aide.  Academically, I knew that he was ready.  And despite their misgivings, my ABA behaviorist and his team, supported me 1000 percent.

Practicing for his future valedictorian speech.

Because of this united front and his very hard work, my son graduated from kindergarten on Friday.  He was promoted to first grade.  He was consistently above standards for reading and math. He met standards in all other categories but two: “reciting chants, poems and repetitive patterns” (ironic based on his echolalia) and “observes and compares” where he received 2+ on both, 2 being making progress toward standards, out of 52 total categories of marks.

Hamming it up onstage.

The day after graduation, we were at the store, he looked at me and said, “Does your tummy hurt?”  Of course the “your” refers to him.  One of the classic tells of his autism (misplaced pronouns).  I asked if he wanted to use the restroom.  I actually know better because he always, without fail, says no.  To this he added, “Does your ear hurt?” and when I asked, he said “yes.”  And, as usual, I was left not knowing what was going on.

However, knowing my son’s sophistication in the realm of manipulation, I assumed he was trying to juke me out of the bathroom run by faking the earache.   I took him to the bathroom.  Eventually, I set my son in front of the child size sink to wash his hands and turned away to wash my own.  As soon as I did, he let out the loudest, power-filled scream.  He did this:

Ow.

The child has no peripheral vision.  Hello, sensory processing disorder.  I forgot about you.  As best as I could tell, he was getting very close to the soap dispenser to examine it and hit his head right against the edge of it.  I cleaned it off and gave him a kiss, getting him quickly back out in the store for distraction.  He forgot all about his injury.  I would call his reaction an adverted meltdown,  a reminder of what used to be, lucky, and a sign of progress.

Checking out surfboards one minute  to asking daddy to carry him the next

It’s been a lot of strange days.  Minutes of playing quietly, changing tires on toy cars with questions of whether I want to help him.  Then, he grabs a toy with a siren and lets out siren noises so loud, I think he’d qualify as a siren himself.  Of course, that is his new stim, sirens.  It could not be lullabies, could it?  Or brushing his mom’s hair?  Or cleaning his room?

The next minute he wants to cuddle on the bed and read a book.

I know he’s fortunate in a lot of ways.  But living with this kind of border dweller has given me the “pleasure” of dealing with those who don’t live it, question what our autism is and whether he “really” has it or whether I’m just a lousy mom “using” an excuse.

My son is regularly monitored by an awesome neurologist who specializes in autism.  My child takes seven medications a day (2 are for asthma), engages in 40 hours a week of ABA, an hour of speech and an hour of occupational therapy per week, and practices reading, writing and math for, on average, an hour every night.

I must be lazy, looking for excuses, spoiling him or doing something wrong.  There’s gotta be at least an hour in there where I’m wasting time with grooming myself, blogging, or cleaning house.  I guess I’ll have to try harder.

Take me or leave me.  I am who I am.  No apologies.

I’ve seen a lot of people advocating for themselves online lately, using language similar to what is above.  I admire that strength and conviction.  I respect it.  (Come on – look at the blog’s title!)  As an attorney, I embrace it when it comes to my clients.  As the mommy blogger of a special needs child, though, I would be less that honest if I said that my posts do not keep in mind the diverse population of the blogging community when I write.

It’s not that I do not believe what I say.  It is that I know there are others who do not think or believe as I do.  I respect the right to differ.  I respect my right to have my say.

Very recently, a television program was produced here in Northern California by a local PBS affiliate which features a snapshot of my son’s story.  I had no say in how the program was written, produced or edited.  My child and I were just one of several families featured, discussing autism, in 26 minutes and 46 seconds for a television viewing audience.

I was afraid, for the longest time, about how the program would turn out, and what its message would be.  From the moment I consented to participate in February to May 30th, when I saw the finished product at its premiere, I’ve had a continual low-level of stress over how my son and I would be portrayed and edited, and what the message of the program would be.

Checking himself out on the stage and the big screen before the premiere…

When the room went dark at the screening, I was nervous.  As I watched and learned, I became impressed.  I liked it.  I know there are people who won’t like it because there is always some segment of the population that will debate most anything. I see that coming.

The program was well-written and factually accurate, as well as filled with information new to me. I am honored that my son is among the stories for a couple reasons.  Dr. Chez, who I’ve written about here and here, is one of the most important people to touch my son’s life.  Dr. Greg Buch, our behavioral therapist, who was also interviewed for the program, is the other.  The program explains why they are so influential in changing my son’s life.  I hope our snippet of a story may help bring some awareness of the benefits of EEGs, ABA and autism, in general, to a public that remains largely unaware.

Tootles and his entourage wait for the program to begin amongst the crowd!

The program brings autism to life through several families’ story.  The first is Dr. Chez’s stepdaughter, Allison, who is 19 and on the spectrum.  She is a beautiful young woman, who lives independent of her parents with supported services.  It is immediately apparent how Dr. Chez is personally invested in medical treatment of autistic children and adults alike.  It showed me how fortunate my son is to be under the care of such an incredibly brilliant, empathetic and honest medical professional.  I would recommend this doctor to everyone, regardless of age or “place” on the spectrum.

Other autistics include a 44 year old adult male who lives in a group home and attends a day program. There is the story of a couple with two very young children who both have autism, another young boy with autism, a 20 year old young man, my son and others.

Tootles and Kelly Peterson, producer of the special share a moment…

Additionally, the producers mention the lack of a known “cause”, research regarding causes, whether there will be a “cure”, and the benefits of ABA therapy.  There is discussion by the head of the UC Davis MIND Institute about a new experimental program in which parents are taught a form of play mixed with ABA (I think this is the Early Denver Model (see here)  via teleconferencing through Skype.  By doing this, they may be able to someday expand it across the country and reach more than the 2,500 families they currently serve.

The underlying assumption of the program is that “autism”, as a disability, is not a great life.  That it is harder and sadder and “less”.  In many ways, “harder” is true.  But from this side of the fence, my life is richer and happier.  There are a multitude of times a day that I am grateful that my child is who he is.  He is kind, smart, loving, non-judgmental, innocent and pure.  Sure, there are tear jerker moments, and those are present in this program. There are also some nice, heartwarming moments, within the program. Overall, it paints more of the struggles than successes.  Perhaps that’s just reality but, in my mind, it’s not our reality.

Lovin’ on my little star.

The program’s last segment is about Amanda, a 22 year old, high functioning, autistic woman who participates in a nonprofit group called “A Touch of Understanding”.  This organization provides education to students in school about disabilities, including autism.  You can read about them here.

Amanda talks to students to help them understand autism and how to handle bullying.  The organization goes so far as to bring headsets into class.  The children put on the headsets and close their eyes.  A voice explains potential sensory overloads for autistics while a fan and other noises play loudly, to simulate what is heard by some autistics to increase understanding.

The program ends with Amanda’s voice reciting her favorite quote from The Lion King:

“And so, we are all connected in the Circle of Life.”

My little TV star, keeping himself busy before the program.

If you are interested, my understanding is that the program, Autism: Emerging from the Maze, will be available online, next week.  (You can see more about the program here – when you click you will see a big beautiful photo of Tootles in the promo!) before it actually airs on June 13 at 7 p.m. on KVIE TV.  I will post a link to the online version of the program when it becomes available.  And for the record, without apologies, I liked this program (not that I’m biased or anything)…

Even the Toots’ kindergarten teachers made an appearance!

Posing with his tutors (or trying to get away- take your pick!)

Chillin’ with one of the girls…

And we opened a window in the kitchen where the kids would walk up and “order” sno-cones from the outside (Score – keeping the kitchen slightly cleaner – me!)

There were a ton of people in our house…

And yet Tootles held it all together and ate up the attention when the Birthday Song was sung.

He hung out, having drinks with old homies,

Made time for some newfound buds,

and, of course, he mingled with his lady friends…

First, he has to work the “older” girl…

Then, he listened patiently to the tales of the classmate…

And, finally some fun slide time with a friend!

And, lastly, he had to pose for a photo with his mama,

So, as you can see, it’s been a bit of a circus around these parts!

Happy Wednesday!

The boy’s mommy had a lot of patience for the little boy.  But even the mommy could not help the little boy when it came to – The Birthday Fairy.

Of all the beautiful and cool fairy images, Toots says THIS one is the Birthday Fairy…

You see, every year, when it got close to the little boy’s birthday, in late May, the Birthday Fairy came out of hibernation.  The Birthday Fairy sleeps all year, except for the last couple of months before this child’s birthday.

Each year, the Birthday Fairy awakens with very weak wings.  Now, the Birthday Fairies are a varied lot.  They can be male or female, young or old.  This particular little boy had a female Birthday Fairy, who was gorgeous, being as she looked nearly identical to the boy’s mom.  (Why are you laughing?  That’s just not nice.)

The Birthday Fairy needs those wings to get strong so she can fly around and buy birthday presents, and put together a birthday celebration.  Sadly, if the Birthday Fairy hears too many loud sounds, well, her wings fall right off!  Loud sounds injure the delicate little Birthday Fairy’s wings.

If the Birthday Fairy’s wings fall off, there can be no flying, no presents and no celebration.  Harsh, eh?  Luckily, even if the wings fall off, they can reattach, strengthen and fly, given enough remorse by the birthday boy, and enough time to heal.

That Birthday Fairy is a powerful force around these parts.  If the siren noises, TV, iPad music or the screaming gets too loud, those wings are falling off!  I get a lot of:

“You don’t want the Birthday Fairy’s wings to fall off?”  after a particularly loud scream.  I will look at him and say, “Oh, I think those wings are really loose!”  He will respond with, “NO!” and we seem to have a reduction temporarily in our noise level.

Too bad his birthday celebration will be over at the end of the weekend.  Hmm, maybe a Fourth of July Firework Fairy?  Nope – fireworks are noisy – he won’t buy it.  A Summertime Pool Fairy that only allows playing in the pool when there is no screaming?  Nope – screaming is standard at the pool.

Oh well, it was good while it lasted.

[And yes - Toots and I have birthdays four days apart!  Thanks for all the birthday wishes for me too, my friends!  Happy Memorial Day Weekend! ]

Tootles knows he has to be quiet.  Now, that he’s been desensitized to headphones, look at this:

He’s quietly playing his iPad during the meetings!

So, Daddy has asked him, after the meetings, what kind of “chicks” go to Weight Watchers.  He has learned to say “skinny chicks” go to Weight Watchers.  The other day, he told me the Weight Watchers ladies have orange lips.

I was confused.  ”What?” I asked, “Why do the Weight Watchers ladies have orange lips?”

“Because they’re chicks,” he answered.

Thanks, Daddy.

Happy Wednesday!!

Standing next to the gas pump, it was 9:30 in the morning but the air was hot. The wind blew her recently brushed hair onto her nose, and in her eyes and mouth. She held the pump with one hand and pulled the hair out of her mouth with the other. The temperature of the breeze was just enough to feel perceptibly cooler than the hot morning air.

The breeze carried with it the smell of tacos. They made her hungry. She had no desire for a taco but the smell beckoned her. She fleetingly thought how difficult it would be to work so close to that smell without wanting to eat one every day.

Six feet away from her was the emaciated frame of a man with long gray-blond hair parted in the middle and braided down his back to his belt line. With a back pack on, he was bent over the trash bin.

At first, she thought he worked there, changing the liners of the bin. On second glance, and hearing the clinking of aluminum cans, as she filled the tank of her enormous SUV, she saw that, yes, indeed, the man was working. He held a black plastic trash bag in his hand and was sifting through the garbage for recyclables. It was clear, though, that he was not an employee of the establishment. His face never turned toward her. He never made eye contact. Nonetheless, she had that nagging discontent that he might come forward and panhandle from her. He did not.

He found that for which he was searching as she continued to fill her tank. The metal clinking moved from the receptacle to the bag. Then, he left, crossing the street and disappearing beyond the taco place. She wondered if he too, wanted a taco.

The irony of their life stations was not lost on her. She felt a twinge of guilt. Why was her circumstance so different from his? Why was he searching in the trash bin for the elusive nickel of aluminum to trade for cash, while she was able to pay $4.29 per gallon to fill her vehicle? Why was she traveling so comfortably while he traveled on foot with nothing more than a backpack and black plastic bag?

She often wondered what led people to homelessness. What separated her from them? Why was it that there was such dichotomy in life? Was it just luck? It pained her to her core.

More importantly, she could see how social missteps could lead to this place. Misunderstood, missteps in a society that pushes for social conformity. Unable to place the square peg in a round hole, perhaps the man searching for cash in the trash said or did the wrong thing, or a series of wrong things that led to one loss after another. Perhaps he was an addict. Maybe, he did not think like the majority and was ostracized for his ways.

It was comfortable for her to think he was lazy, a drunk, a thief or worse. Any thought wasted on him at all was easiest if she could dismiss him. She could only do so if she thought he wanted others to do things for him for selfish or immoral reasons, instead of having the pride, self-respect and desire to it himself.

If she made the effort to think otherwise? It might hit too close to home. It might bring her to thoughts of the little boy waiting in the car seat inside that SUV, while she stood next to the grown man bent over the trash. The little boy whose needs were different from the rest. The little boy whose social skills were missing. The little boy whose social missteps might, God forbid, lead him down the wrong path someday.

In her heart, she knew that. And she could not bring herself to say anything to that man before he ran across the street and away. So, instead, she said a prayer. And left it in God’s hands. Was that a coward’s way out? Would she really do anything differently next time? Was she soothing her own needs with that prayer, or was she foolish to think that this man might have some value, some worth to contribute to others?

She did not know the answers. She did not know that she ever would. She only knew that between her life and his, there was a huge contrast. A contrast that could evaporate in an instant, and one that she never wanted to face.

We were on the floor looking through a drawer.  Come on – confess.  You must have at least, one junk drawer.  (It’s pretty much the only kind of drawer I have in my house…) There are a lot of little do-dads that the Tootles has collected through the years.  Happy Meals’ crappy toys, party favors, freebies from stores or other places, and things people give him just because.  I don’t know where to put a lot of this “stuff”.

Actually, I’d like to throw it away but Tootles inventories everything.  He has a photographic memory for his things and when and where he got them.  I’m often quizzed on the subject and remember nothing.  He recalls everything.   If a plastic cap, from a pencil given to him at age 1.5, by a clown, tying balloon animals at the mall, goes missing?  He will pester me to the ends of the Earth, to find it.  Even if I tell him I have no clue where it is, or that it was thrown away,  it matters not.  He will continue to pester me through my dinner, shower, toileting, washing clothes and dishes, and in the car to find it until he finally falls asleep.

Curse you, light up drumsticks!!

So, there’s a lot of crap in this junk drawer.  This time, he was on the search for a “drum stick”.  It is one of those light up, clear, toy drumsticks.  When you tap it, it makes a drum roll or cymbal sound while simultaneously lighting up in different colors.

We got it from K-B Toys.  You know, the K-B Toys that went bankrupt in 2008?  When my kid was 2 years old?  The drumstick he has not looked at or played with in almost four years.  I was trying to eat dinner when he got this hair up his rear end.

The reason he was on the hunt for this drumstick is that he was about to take his first drumming lesson and he wanted to fool around with it for practice, instead of going upstairs and banging on the real drums.  And he was not going to let this go.

Eventually, I got on the floor with him and started wading through the drawer that had this in it:

And this:

I think this was a part to something. Who knows what.

And this:

I soooo want to throw this away!

Then, he found this:

You must recognize this stuff.  It’s the foam edging that goes under the baby-proofing for the table edges so our kids don’t bash their skulls when they inevitably crash into the table.  Our house is still baby-proofed.

That foam cushion goes under the gray edging for the corners.

He looked at me and asked, “What is that?”  I told him.  While I was telling him, he raised it to his cheek and ear.  Holding it like a phone he softly said, “Hello?  Hello?”

Hello?

It was so cute.  He was pretending the foam was a phone and that he had someone to talk to!  I giggled and told him I thought it was cute.  He looked at me and said with a straight face,  “Mommy, to stop laughing!”  Apparently, either I embarrassed him or he was embarrassed of me, not sure which.  He followed by looking at me and saying, “Mommy to go to the computer.  Look that way, Mommy!” he said and pointed away from himself.

I was entertained.  I looked away.  He then held the foam up to his ear again and softly whispered, “Hello? [insert girl's name]?”  It was all I could do not to bust out laughing.  He was pretending to talk to one of the girls in his school!  Hey!  He was pretending!!  He was using the name of a girl IN-HIS-CLASS!  He was actively monitoring my reaction and expressing his uncomfortableness about it!  Who else would say hooray to that?  All of these things were supposed to be so unusual for my ASD kid, yet they were not at that moment.

Yes, it’s a junk drawer.  But when we opened it that day, a little magic spilled out.  How cool is that?

And if you think that’s hard, how about this one?

It’s the eyes!

And those cute little octopi?  Those are from the Itsy Bitsy Spider, an etsy shop run by our beautiful friend, Karla at Beyond the Dryer Vent!  Tootles LOVES them.  You should check her shop (click this link – yes that word “link” click it!!) because she and “it” are awesome!!

Happy Wednesday!!

I was filled with worry and doubt.  Heading up on the escalator from the first to second floor, the nearly-white haired, fair skinned boy in a striped shirt and shorts caught my eye.  He called out to his mom.  He was on the second floor with his dad, looking over the railing to the first.  “Look Mommy!  Look at me!” he yelled.  He could not have been more than two years old.

In that brief moment, those five words sunk my heart to new depths, solidly between my intestines, well below a natural resting zone.  Something so simple, so benign to most, crushed me to my core.  My son had never uttered those words, though he was twice this boy’s age.  My son had never asked, motioned, attempted or indicated he had a desire for me to watch him do anything.  He could not.

It was more than just not having the words that got me.  It was the whole relationship that the words conveyed.  The desire for the mother to watch the child accomplish something.  That the child realized his triumph. Those simple words spoke of accomplishment, pride, a desire to share, communicate, and to bond.  They spoke of a spirit of unity, a desire to please, a request for acknowledgment.  And they spoke of love.

Our world was void, not of the feelings, but of the words.  Hearing the words “speak” or “speech” for me, back then, made me think of the process of vocalization. “Speech” was nothing more than the way to vocalize the words inside one’s head. I did not think about processing what was heard with delays through multiple sensory inputs.  I did not think about understanding and then expressing a response to what was said as part of “speech” or communication.  Things that were so automated for me, I foolishly assumed, were equally so for everyone else, regardless of whether the vocalization actually occurred.

In that moment, on the escalator, I suddenly realized how shallow I’d been.  I recognized that there was more to get the words out than “saying” them.

And in that moment, I wondered if there would ever come a day that my son would ask me to look at him.  That he would feel the accomplishment, the pride and the desire to share that with me.  When you look that in that direction and really see the unknown, as a parent of a young child with autism, for me, there was fear and sadness.  Where did it come from and why did it overtake me so?

In a moment I went from a deep, comfortable love for my child to staring at a huge chasm that separated us.  Instantly, I was overcome with desire to bridge it.   But I had to search for the materials and tools to do so.  That longing, painful desire to close that chasm propelled me.  And I used the pain to move.

I don’t think the imprint of listening to that little, fair-haired boy will ever erase from my mind.  There was an intensity after I heard those five words that woke me to the chasm. I saw it in all its depth and separation that day.  That day was over two years ago.  But the lessons that it taught me will last a lifetime.

Never let fear of the unknown stop you.

You see, I know now that the day did come.  But at the time, I wondered.  It did not come as it does for children without a disability.  It has taken much longer.  We still have a long way to travel.  But the pain and the sadness I felt from those moments motivated me to leave no path untraveled and no rock unturned.  In times of exasperation and doubt, I know that pain and fear will push me to find ways to help my child communicate.

We found a way.  My little boy has grown, developed and blossomed.  He still doesn’t say “Look Mommy!”

He says, “Watch me Mommy!”  “Mommy to watch!”

The first time I heard it, the tears came.  And after that, he said it again and again.  Every day.  I still relish each moment.  To me, hearing those words is still as rare as a perfect diamond.

Many times, we cannot look past a chasm because it’s imposing, dark and deep.  We want to run.  But, as parents of children with special needs, we have no choice.  We face chasms every single day.  We stand our ground, build bridges, tie ropes across, wage our battles and fight.  Because love always trumps fear and pain.

Remember that those words have come for others.  We are no different from you.  Use your pain and your fears.  Harness them as your power.  Many good things are borne out of a bizarre combination of desperation-motivated searching and deep love.

From one mom to another, you are never walking this path alone.  There are thousands of us on the same journey, each standing on rungs of life further forward or back on the path.  We hold each other up, laugh, cry, shake fists, share and love.  Hey, watch me!  And I’ll watch you.  Pull me up and I will pull you.  We can cross the void together.

“Love me or hate me, both are in my favor…If you love me, I’ll always be in your heart…If you hate me, I’ll always be in your mind.” 
― William Shakespeare

Sometimes, you just need a list to describe who you really are.  I describe a little bit of my son here with every post, but a lot of who he is comes from what he loves and, well, what he doesn’t love.  Here’s a little sampling:

Things my son hates:

The car wash

His hair brushed

Tunnels

Using the toilet

Yo Gabba Gabba

Coloring

Breaks in routine

The Joker

The Dark

Mommy’s singing

Homework

Trying new foods

Chuck E Cheese

Sleeping

Things my son loves:

Pencil sharpeners

Measuring tapes and power tool toys

Push Buttons of any kind

Remote control cars

Oswald

Cheesecake

Colors

Fruit Ninja Bombs

Elvis

Toys R Us

Flashing lights

Elevators

Strawberry Milkshakes

Gluing

Singing

Dancing, and

Sleeping.

You see, sleeping is a bad idea, until it happens.  Once asleep,  he does not want to get up again.  Sound familiar?  It does to me too.