Fertilizer isn’t just a bunch of crap.

It’s been 10 months since Jack broke his leg.
In that time we have been on a mission to learn more about osteoporosis, drug interactions, growth plates, bone structure, weight-bearing…..
The list goes on.
And on.
And we are laser focused on getting Jack to walk.

In the past month or so we got the go ahead to ramp up physical activity and get Jackson to move more.  To bear weight.  To exercise.
We go once a week  to physical therapy AND to swim therapy TWICE week.
At home I stretch his legs and make him move.
We practice standing up.
We practice putting our arms above our head.
We move.

Jackson and physical therapy is hit and miss.
He tolerates it.
He  is not thrilled with the constant movement.
It has no bearing in his life.  He cannot grasp the concept of these insane movements we put him through.

“Why am I moving over there and back again?  Why are you making me walk backwards? What’s up with this side step thing?!? Get that box out of the way….
Hey.  Just let me sit…….”

Jackson would spend HOURS in the pool if we let him.

He floats.  He moves.  He’s supported and free.
He yells TIIIIINNNNNNAAAA!! THE WAAAATTTTERRRR! loudly and with joy.

His foot is weighted.  We walk.  We bounce.
We are making great progress.

This past Friday we were able to have Jackson’s teacher peek in on Jack’s physical therapy.  He was impressed.
AND inspired.
So much so that Monday morning when Jack was wheeled into class, Teacher Paul exclaimed, “Jackson!! So good to see you! I loved seeing you walk! Let’s walk!!”
So amid VERY LOUD protestation from Jackson, Teacher Paul and I raised Jack out of the “wheels” and assisted him to his desk, halfway across the classroom.

What happened next was so amazing.
What happened next was so inspiring
What happened next raised my faith in humanity a few more notches.

All the kids (and aids in the classroom) started cheering on Jack.

“You can do it Jack!”
“Go Jackson!!”
“I’m so proud of you Jackson!”

It was with great effort that Jack sat down . When he raised his head to the applause and cheering I was giddy to delight to find Jackson LOVING the verbal support.

He was smiling.
He was grinning like a Cheshire cat.

And the kids in the class were truly happy to see their classmate walking.

It was a spontaneous celebration and I was honored to witness it.

I have been so focused on the end result, I forgot about the journey.

And it got me thinking……
Why don’t we cheer people on more often?
When was the last time you saw someone struggling and gave them encouragement?
When was the last time you saw someone needing a lift and gave it to them?

Positivity doesn’t cost a thing.
And it reaps benefits beyond compare.
Encouragement is an awesome commodity.

Thorton Wilder once said:

“Money is like manure; it’s not worth a thing unless it’s spread around encouraging young things to grow.”

I would possit that the same can be said of love and encouragement.
It’s the best fertilizer around.

Jackson and his classmates reminded me this week that you gain more by giving.

Spread that joy around.
Make things grow.

img_2334Jackson at physical therapy.



Ask any autism parent and they will tell you:
when their kid gets fixated on a toy- that’s it.
You better have a back up.
You better not lose it.
You better be able to produce it out of thin air when needed.

In our household there are several standbys that are always handy-
Slinkys, Legos, phone cords, spinnings and books.
And now we can add a new one.
Jackson has decided he has a new favorite toy.  He pokes it, he prods it, he pats it, and he delights in it.  He throws Legos at it.  He laughs at it, and he cuddles with it.

The toy?

Jackson will request:
“Tina sit with you?”

And so I do.

He will bounce up and down.
He pull up his blanket so it covers us both.

Then the fun begins.
He will poke my eye and smile.
He will pull on my chin so I am face to face with him.
He will burp on purpose so that I will make a face.
He will pull on my braids and laugh and I make a face.
He will wrap his hand around my necklace and repeat “Tina necklace” over and over.
He will put his arm around my neck and smile broadly at me.
Sometimes we even sing together.

And on it goes– for as long as I will let it.
And how long will I let it?

For as long as Jackson needs it.
For as long as Jackson desires my presence.
For as long as Jackson.

Because THIS toy will not get lost.
THIS toy will not mysteriously disappear.
THIS toy is built to last.

THIS toy is real.


“Real isn’t how you are made,” said the Skin Horse. “It’s a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.”

“Does it hurt?” asked the Rabbit.

“Sometimes,” said the Skin Horse, for he was always truthful. “When you are Real you don’t mind being hurt.”
Margery Williams, The Velveteen Rabbit

















Gratitude: A way of Life

I get that people are well-meaning.
I do.
They want to commiserate, to show you they understand, to let you know they “get it“.

But the sad truth of the matter is: they really don’t.
9 days ago Jackson had his first grand mal seizure in over three years.

It was a- full-blown – body- shaking -drooling -get -the- rescue- meds seizure.
And then less than 12 hours later? It happened again.
In his sleep.

Thankfully, I sleep with Jackson so it didn’t go by unnoticed and we were able to follow SOP.

I related this to a coworker…..and how yeah….it sucks and I am not getting much sleep.
And Jack is still not walking even though his leg is healed and……
She TOTALLY gets it cause her 7-year-old wets the bed.
And there is sooooo much laundry to do “It’s relentless” she says.

Hmmmmmmmm fear of SUDEP  versus your neurotypical kid wetting the bed…….

And I went off and pondered.
There are many of you out there that DO get it– fellow TSC moms, special needs parents, and those in our close inner circle that see what it takes to raise Jack.

And yet……
WE have it easy.

Recently the world lost a beautiful soul by the name of Kreed.
Kreed was medically complicated beyond normal standards, but a shining star with two moms whose strength and devotion was beyond compare.
His story and efforts to raise funds to bring him home can be found here on his FaceBook page.  I encourage you to visit if you haven’t before. Go back and read over his life and his struggle. Get to know one of the most joyous and courageous souls you’ll ever meet.

I’ve been at a loss to truly put my emotions into words the last few days.
I look around at the world and I want to scream:  quit fretting about petty bullshit!
Who cares if you can’t find your LuLaRoe unicorn leggings?
Who cares if your coffee at Starbucks didn’t get the full shot of vanilla?
Who gives a good goddamn that ( fill in the blank with whatever you are worrying about at this moment that is not life threatening or has the potential to be)?

I have friends in the TSC community who’s children are in and out of ERs.  Seizures.  A cold that turns into pneumonia and threatens the life of the child and months of progress lost.
I have friends who have to deal with their children’s feeding tubes, complicated medical procedures, and fight the system trying to get services. And yet we as parents and caregivers and sisters and brothers get up every single day and do it all over again.

And so to you that do NOT deal with this?
I say:

Practice an attitude of gratitude.
Realize that — you know what?
Things could be a whole lot worse.
Maybe be grateful that you CAN spontaneously go to Starbucks.
Be grateful that your child who is being too loud– can TALK.
Be grateful.

I have this standard reply I give people when they apologize for something silly:
Like the cashier in the grocery store who apologizes for a wait in line, or when a waiter apologizes for being out of a food item

“if that is the worst thing that happens to me today, then life is pretty damn good”

Be grateful today.
Find your blessings
Because I guarantee you
You have a whole lot of them.

Let your creed be LIVE.
Do it for Kreed. Do it for Jack.

Another leg of the journey……..

Another leg of the journey……..

I may be a little late in saying this, but……


I’ve been a little busy.  You see, Jackson took a minor spill on New Years Eve and life hasn’t been the same since.
First off– the minor spill had MAJOR implications. Jack broke his leg when he stumbled between the grass and the sidewalk.
If it was you or me, we might just get up, brush ourselves off and move on.
But it was Jackson.
And so we found ourselves in the ER
And we found ourselves hearing his leg was broken
And we found ourselves hearing the radiologist offhandedly remark about how Jack has osteoporosis
And we found ourselves at a loss as to how to transfer a child  (weighing well over a hundred pounds) with a BROKEN LEG — not yet casted –without a wheelchair.
And we found ourselves at a moment trying to figure out WHAT TO DO until the leg was cast and Jack could be mobile.

Think about it:
Moving Jack. Bathing Jack.  Toileting issues.
ALL of these things we have to figure out
on New Years Eve.

But, like cream, we rise above and  we DO figure it out.
We begin to research the connection between Dilantin and osteoporosis.
We get an unexpected call from a friend who HAS a transfer chair (AND a pan of tamales)
Dear friends visit with food, balloons, and coffee.

We learn that our low kitchen counter is the perfect height for Jack to lean on for pants changing.
We learn that once Jack gets his cast on, he can bear a little weight and scoot  about in his chair.
We learn that he comes to love his “wheels”.
We learn that his big sister is a CHAMP and at fifteen is every bit as qualified to care for her brother as any respite worker we’ve had.
We learn – yet again- the resilience of the human spirit, and our family’s ability to rise above what TSC throws at us.

And Jack?
On behalf of Jackson I would like to say: Fuck you, once again, TSC, FUCK you.
We finally hit our stride.
We’d been seizure free for two years.
Language and thinking and developmental growth was all happening and ……


When we weren’t looking, and when we were thinking we were soooooooooo happy because we were seizure free…….something else HAD to pop up.

Osteoporosis as 13.
Possible issues with growth plates due to the osteoporosis.
Maybe even rheumatoid arthritis.

And the connection?
One of the seizure meds we are using.
How’s that for irony?
There is a connection  but we were never aware of it.
And to add insult to injury?  You cannot add calcium supplements to counteract the effect Dilantin has.  Why? Because too much calcium renders the seizure med ineffective.

So the logical step would be to remove the Dilantin, yes?
I ask you: What would YOU do?
You’ve finally gotten seizure control.
(after years and years of seizures.  life flights.  rectal delivery emergency meds. years of hit and miss with other meds)
Now we disrupt that and consider:  Will the approach of puberty have any affect on the seizures?  The fact that the tumors have not grown and in some cases are shrinking- will THAT affect the seizures?
Do you wean off of EVERYTHING and start from ground zero?

These are the things we will be discussing with our TSC clinic.  And the rub?
There are NO REAL answers or SOP, or fixed protocol.
THAT , my friends is the reality of TSC.
And our reality with Jackson?
We fight, we research, we protect, we support and we LOVE.

I am there for him every day, and I will ALWAYS be there.




Other Choices

Other Choices

I’ve been busy.
Really, really, busy. I have been, as the kids today would say: ALL THE BUSY.

Looking back it’s been two and a half months since I last blogged. It’s not for lack of things to say, but lack of time that kept me away.

I work.  I am a mother.  I am a wife.  I am a “maniacal crafter”  and I sell my things (shameless plug).
I have friends I like to visit with. I have obligations.  I have places to go and people to see.
I have the occasional headache or ailment.  I have appointments.  I have stress.  I have housework.
You get the idea.
What I am trying to say is:  Life is full.

And so, the other day I was  scrolling through Facebook I saw a meme that left me laughing.  It left me laughing hard and gave me the resolve to dust off the blog .  The meme was from the good people over at Autism Hippie.  I immediately shared it over at Jack’s page.

It was this little gem:



Look at that.  No overly sentimental photo.  No cutesy pie pic. No vintage graphic.
Just those amazing words.

You see, special needs parents get this a lot.
HOW do you do it!?!

Do what?
Love our kids? Do what is necessary to see that they are healthy and happy? Make them a priority?

Make no mistake….I am aware that other parents get this.  A friend of mine has a set of triplets.  HE can tell you stories as well!

But I digress.  I am Jackson’s mama. I am Darrah’s mama. That’s some serious committment right there.
What other choice DO I have? When the going gets rough I cannot just up and leave. It’s not like I could pack up and move cross-country on a whim to escape it all.  It’s not like I could move to an ashram to navel gaze and find myself.
No.  That’s just silly.  You just pull on your  big girl panties and greet the day with love, joy, compassion, and a huge cup of coffee. Day after day after day.
You just DO.
There is no other option.
And since that is the case, I say — enjoy the hell out of it.
Enjoy the chaos, the clutter, the messy, and the struggle.
It’s what we are here for.  It’s what life is all about– putting yourself out there and greeting the day with courage no matter what.

You know who taught me that?
Make no mistake, life is not easy for the boy.  He’s got this whole brain tumors/autism/seizure thing going on and yet he gets up day after day with a smile on his face ready to greet the day.
He struggles, he fails.
He struggles, he succeeds.
He goes on no matter what, with joy in his heart.

How does he do it?
I am not sure he is aware that there is any other option.
And neither am I.
Jack and I?
We’re on the same page.

On the same page and on the same pillow, too

On the same page and on the same pillow, too

Saving grace

It was a cool and overcast afternoon.
Jackson plopped himself down on the couch and stated, “Yes, shoes on.”
Shoes on, then a sweatshirt pulled over his head, he stopped to  pick up a Slinky from the floor.  Then he picked one up from the couch.  And another from over by the door.  (Yes, it is true: our home is lousy with Slinkys) Chubby hands full of Slinkys when Jack spies an “open”.  (to you and I its a wire basket.  to Jackson, it is an “open”)
Hands full, Jackson heads out to the door and settles onto the swing.
He stimmed.  He swang. He rearranged the Slinkys in a pleasing manner, and laughed at the wind.
All of Jacksons motions are deliberate.  There is never a wasted motion.
This continued for a bit and he gathered his treasures and made his way across the yard to the fence line.

I took this moment to sit myself down on the swing and enjoy the afternoon and the view.

And the view?
Jackson playing with his Slinkys by the fence.  His left index finger poked at the corner of his left eye.  His right hand above his head- Slinky bouncing from his fingertips, just grazing the ground.
I call out, “Jackson!! No poke-a- eye!” and his left hand snaps down to his side.
He bends over to pick up another slinky.  It is connected to another Slinky and the wire basket.
I rise to help him.
Then sit.
He hasn’t asked for my help.
I watch him work his way through it. The first Slinky gets set down on the ground and both hands start working on the tangle.  His head tilts to the side with a purpose.  Something about the crosshatch of of the wire basket and the Slinky catches his fancy and he smiles.
His hands work again.  The head tilts.  Another smile.

Soon, Jackson has worked free the tangled Slinky and rises up with two Slinkys — one in each hand.
Standing now, a breeze fluffs his hair as well as the plastic coils.

He is happy with himself.
He is happy with his work.
He is in a moment of grace.

I needed this lesson– to let things unfold– not to rush into solving a problem that wasn’t even a problem.  To remember that Jackson CAN ask for “help with it”– and to let him work out what he can– or chooses to.

Because sometimes a tangled mess of Slinky’s can lead to life’s great lessons.


If you’ve met one autistic kid……..

I was on a mission the other day.
The mission was to stock up on Jackson’s favorite spinnings.  Spinnings which are not to be confused with BIG spinnings or pinwheels.
I trekked two towns over to the SAK’S FIFTH AVENUE of Dollar Stores.  Truthfully.  This is the best stocked, most awesome Dollar store EVER.  Or not.  It could just be that I need to get out more.
They did indeed have the multi-colored spinnings that I needed.  For a buck (DUH!).  So I stocked up.

While standing in line, the cashier mentioned that one of the five I was purchasing had squared edges, rather than round.  Would that be OK?
I said, “Sure! No problem.”
She replied,  “I thought if you were placing them in your garden, you’d want them all the same.”
“No,” I said “My son is autistic and he loves to play with them.”

Two lines over a man whipped his head over to my direction at the word “autistic”.
He fairly bounded over to me and said “Hey! Hey! You’re son is autistic!? I bet he LOVES to play minecraft!”

I stared at him.
“No.  No he doesn’t”

He was undaunted, “Really? I heard that autistic kids LOVE minecraft. That’s the video game with the squares.  Huh.  He doesn’t like minecraft.”

And so he stared at me.
And I stared back.

He walked away.

Listen.  If you know me in real life, then you know that I am a fairly friendly and gregarious person.  I can chit chat with the best of them.  But at that moment I was annoyed and irritated.

First– I was annoyed with myself.  Did I REALLY need to call Jackson out like that? Couldn’t I have just as easily have said, “No, they’re not for my garden, but for my kid”?  Yes. I could have.

Second- I was annoyed with that man.  At the sound of the word “autistic” he had to run over and give me his two cents on it.  He had to let me know that HE knew something about autism.  Did he think I would find it clever? As if he produced a rabbit out of his hat?
“Why YES, Mr. Random Guy! How did you EVER know?! Aren’t you the smart one!” (and I would bat my eyes and smile at just how much this person KNEW about the autisms!!)

This encounter begs the question though:  What do YOU know about AUTISM?

If you read my blog or follows Jack’s Facebook page,  then you are familiar with OUR version of autism.
If you are the parent of an autistic child (or a child with autism), then you are familiar with YOUR version.
And sometimes? Traits and behaviors overlap.  Food aversions, sleep patterns, stimms, etc.
And what we moms, dads, caregivers, etc GET is that:
It’s different for each and every one.
Every day.
Every time.

And so the ones that DO get it? They’re the ones that hear the word “autism” in the Dollar Store and give you a knowing smile.  They’re the ones that pass you in the mall when your child is making a barking noise for the sheer joy of the echo and they nod and smile as they walk by you.  They’re the ones that see a melt down and don’t automatically assume a child is a spoiled brat who needs a good spanking.

And the next time someone asks me why I’m buying a dozen spinnings, or several bags of fuzzballs, or why my grocery cart is filled to the top with bags of a specific  type and brand of chip, I will just say:

“Because my son Jackson loves them.”

Aaaaaaaaand we’re back!

I’ve heard it said that “blogs are crap, and just vanish when the power goes out”.
While this may be true when it comes to blogs about Traci Lords porn, fancy shoes, or the fashion choices of folks in Humboldt County California, I can personally attest to the power of “mommy blogs” and the online support community of special needs parents.

My online voice has been quieted while my family has been going through some legal court stuff that was put in motion to ensure the continuous care of Jackson should something happen to my husband.

Let me get this out there:
I blog for Jackson.  For myself.  And for those that choose to read it and carry away a grain of truth or a modicum of hope.   I believe that I have a unique voice that rings true to some.
I am a PollyAnna purist who can find the light in any darkness.
There has never been any adversity or battle that I could not overcome.
And there have been plenty.
What has kept me afloat in the darkest of times has been the mantra:

Yep all good things must come to an end.  And conversely– so must the bad.

Our legal struggles are not over.

But I am choosing to get back into the habit of tapping on the keyboard and getting out my brand of blogging.
To document the life of a child with a rare genetic disease, a seizure disorder, severe autism, and a glowing soul.  To document the lessons I am taught.  To remind others in the same position that there is joy to be found.  There is beauty in the struggle.
There are monumental life lessons that are there for the taking.

And I am back– with a vengeance– to share them with you.

Stay tuned.
There is so much more to come.

A Holiday Message

I have been meaning to write a new entry– really I have.
And then for some odd reason THIS ENTRY of my blog has been getting renewed attention.

It started as a FaceBook note on my private page…..then morphed into a blog entry.
It speaks of routine.  It speaks of family.  It speaks of consistency and sacrifice.
More importantly, it speaks of uncompromising love.

And so, it led me to reflect on the past  two and a half years of writing about my life with Jack.

Through Jack’s page on FaceBook I have met many a righteous parent, child, grandparent, activist and TSC warrior.
We have shared love, support, empathy, understanding, and anecdotes.
We have rejoiced together over our children’s triumphs, and commiserated over the setbacks.

And so to all of you parents out there this Christmas…..
be you the parent of a special needs child , or not
be you the birth parent, or the step parent, or the parent of the heart
I say to you:

Thank you.
Happy Holidays
Take a deep breath
Let it out slow

You’re doing great and we’ll get through this together.

The Holidays are rife with warmth and love, the New Year brings the promise of renewed energy.

I thank you all for your love and support.

with love,
T and Captain Jackstastic

Dream a little dream

As far back as I can remember I have been a very vivid dreamer.  I can still remember dreams that I had as a child in exquisite detail and feeling.
Some dreams leave me exhausted; others, exhilarated.
In my dream state problems get worked through, stress gets relieved, events get relived, and sometimes desires get fulfilled.

I recently had a dream about I child I had worked with and whose mother founded a local autism support group.

Caden is a ridiculously beautiful boy whose dx includes Fragile X Syndrome and autism.  (You can read more about him HERE as his mom has also guest blogged for me!)

In my dream a handsome young bespectacled man in a pinstripe Oxford clothe shirt approached me and asked me if I had ever worked in the PALS program.  ( an early intervention program here in Humboldt County.)  I replied that I did and he informed me that he was Caden, the little boy who used to sit and endlessly flip through pages of books.

At once the knowledge of how far this child had come and who he was now was like a huge weight lifted off my shoulders and the world in general.  In my dream I began to weep.  Tears flooded my face and my body was wracked with sobbing as I became overwhelmed with emotion.

From behind me I heard Clay and Jackson (also grown) laughing at me in a good-natured manner because I always get “so emotional”

I awoke from this dream with a renewed sense of passion and hope.  These children– ANY special needs child– need the constant hope of potential– the solid foundation of belief.  Our children need to be seen as unearthed treasures.  We need to forage and mine, dig and discover the beauty of who they are in this moment, as well as who they can grow to become.

It sounds so simple and chock full of common sense, doesn’t it?
But it’s not.
Routine can wear us down.
Setbacks can wear us down.
The sheer weight of what is needed to be there 100% day after day can wear us down.

So I invite you all to take a break.  Take a nap.
Regroup, recharge and rediscover that hope.
Focus on the beauty of the moment– the unique gifts and talents YOUR child possesses.

Dream of little Dream of beautiful future.