I’m sitting with Ella curled on my lap, her limbs
shaking hot with fever. Her choked moans break through her soft snores, showing me
how terrible she feels. I was just holding the cold metal Vomit Bowl for her as
she threw up. Meanwhile, Alex is slogging through math homework in the other
room with Aidan. Alex is infinitely patient, redirecting his boy, refocusing
him repeatedly, re-teaching him the skills he missed during class today because
his brain was focused somewhere else. And the two older boys are having a big
hissy-fit-twin-brother-war upstairs. I hear things being thrown in my bedroom, crashing,
accusing screams, swearing. In the midst of this familiar chaos, my phone dings
with a text from my love, asking me what I want for dinner. This is how we
communicate in the evenings- by text. Sad, right? But when there are four needy
little beings and only two grown-ups to love on them, we’re spread thin and
have to do what we have to do. So texting about dinner while I hold a
vomitacious girl and two boys are probably bleeding from anger upstairs and one
boy has no clue what the Distributive Property is…it’ll do.
Welcome to my Wednesday.
It’s been a very long day of advocating, chauffeuring kids
from dawn until dusk, trying to get some work done…all the while not feeling
well myself. It’s been an uber-stressful week, one where I feel my body ready
to give out at any moment from the sheer mountain of stress I’ve been climbing
the last few days. Any moment, my body will erupt into fever, or bust out a
cold sore, or crash into migraine. My body breaks sometimes under the constant,
unforgiving stress of living this particular life of mine.
As I carried Ella gently to her bed tonight, swaddled in a
soft blanket because she is endlessly chilled from her fever, my weary heart
smiled as I enter her room. There are glittery star sparkles all over her
carpet. The stars are starting to sneak their way into the rest of the house
now, I found one on the stairs on the way down, and one on my foot while
sitting here writing. The remnants of the Tooth Fairy who visited Ella for the
first time two nights ago. Ella, at LONG last, had her first visit from the
Fairy. And she was overcome with joy. She woke in the morning to find the tiny
fairy’s glittery footprints on her nightstand. Star glitter in a trail from the
window sill all the way around her room to her bed. Under her pillow there was
more glitter, a sparkly dollar bill, and a sweet little glitter lipstick
wrapped with a pink ribbon. The Fairy had written Ella a special note on a teensy,
fairy-sized pad of paper. Ella read the note in the morning with a hushed, awed
voice. The Tooth Fairy said her tooth was beautiful, that she brushes her teeth
so well, and that she loves Ella. Ella squealed with delight. She informed me
we are never to vacuum her room again. She must have the glitter in her room at
all times. Forever and ever. And the Tooth Fairy is the BEST. And she can’t BELIEVE
she FINALLY lost her tooth! And she loves the Tooth Fairy. And the Tooth Fairy
is the BEST. Pure magic, that girl. Pure joy and magic.
So I’m ok with the star glitter finding its way into other
parts of the house, other parts of my life. When I watch one of my boys having
a meltdown, the tiny pink star glinting on the floor reminds me this tough
moment will be over soon and then we’ll be back to looking for magic.
The day started with an epic, albeit typical, meltdown on
the way to bring Ben and Jonah to school. Someone had forgotten something at
home that he felt was necessary to his mere survival, and Mean Mama wouldn’t
turn the car around and bring him home to get it. Because then we would be late
to school. And in reality, the forgotten item was not a necessity. So we
soldiered on through the meltdown. Our meltdowns are farther apart and fewer
these days. Ben is enthralled with high school. He loves almost every single
thing about it. He has good grades, he is involved in everything and anything
that comes his way, he thinks his teachers are kind and hilarious. He’s
thriving. This happiness is carrying over to our home also. He is less angry.
Less frustrated. Less irritated. Which means things tend to run a little more
smoothly around here. Thank the sweet Lord in Heaven. I said to Ben the other
day, “Can you believe that YOU are my child who is THRIVING in SCHOOL???
What?!? YOU, buddy!! I’m so proud of you!” He is proud of himself, which is
heaps and heaps better than even Mama being proud of him. He went to the
Homecoming dance with a group of friends. He went to a sleep over at a friend’s
house afterwards and didn’t have anxiety!! Who is this kid? I feel like he’s
finally finding his groove, finding his way in life. I said to Alex the other
night that although Ben is almost solely responsible for his incredible
transformation these past few months, we should pat ourselves on the back too.
Because the biggest influence in a kid’s life is their parents. And wow, have
we put our heads down and fought for Ben these past 14 years. We’ve fought
hard. We’ve broken under the stress of the fight at times, but we kept digging
and advocating and helping and supporting and loving, and we kept fighting for
him. And just look at him right now. Unbelievable. There certainly is magic in
this world, and its name is Ben. (With a teeny bit of help from Mama and
Daddy.) Do I worry and wait for the other shoe to drop and things to take a dip
back to the tough side? Yep. But I try to relegate that to the back of my
heart. Stay back there, Worry. Just cherish these beautiful moments of success.
Worry can wait. We may not even need Worry anymore. Or at least not right now.
Jonah is going to school for six out of eight periods a day
this week! Amazing. He had his last tutor come to the house yesterday. Next
week he’ll be back full time if everything goes according to plan. When I pick
him up from school, he’s spent. He’s tired. But I can tell he’s proud of
himself and feels a sense of accomplishment. He’s doing it. He’s kicking his
Anxiety in the butt every morning at 5:45 and getting out of bed and doing what
needs to be done. His medical issues are improving and he’s able to handle life
better these days. His choir sang the National Anthem at the Homecoming
football game last weekend. It was one of those moments where my Mama Heart was
completely busting out of my chest. I was so. proud. of. my. boy. My little
boy, standing out on the football field with his choir, making beautiful music.
My boy, handling new experiences and handling them well. That’s my boy. That’s
my beautiful, brave boy.
My beautiful, brave boy pops in the car when I pick him up,
and I gingerly ask how his day was. I’m afraid to ask because I’m afraid of the
answers. But I pretend to face this life boldly, so that my children don’t feel
fear. So they are bold. Hopefully I fake it ok. I put up my Mama Shield and ask
my boy how his day was, how his new classes that he added this week went. I
hope I don’t crumple with my own tears at his answers. But he carries on, each
day. He boldly puts one foot in front of the other and carries on.
Jonah didn’t go to the Homecoming dance, but did go to the
sleepover at a friend’s house with Ben after the Homecoming dance. Jonah knows
himself well, and knew he would be overwhelmed at the dance. I’m proud of him
for knowing how to make himself happy. You find out quickly when you have twins
that what makes one guy happy may not be right for the other guy. Even though
they’re twins, they are two distinct people. The trick to parenting these two
distinct people who were born on the same day, a mere four minutes apart, is to
remember that it’s ok for them not to be exactly the same. It’s ok to be happy
for Ben that he wants to go to a dance and happy for Jonah that he waited at
home until the dance was over and then went to his friend’s house. It’s a hard
lesson that I’m still working on, but I’m getting there. It takes practice to
divide your heart into four little compartments for your four little people, and
love unconditionally and enormously from each of those parts.
Aidan is a hot mess. But the good news is that he’s still
Captain Oblivious, so he really doesn’t grasp the full extent to which he is
floundering in school. That is truly a gift. It does register to him on some
level that he is not succeeding with the ease that his peers do. He says things
like he is stupid, dumb, he doesn’t know anything. Talk about tearing his Mama’s
soul to shreds. The biggest problem is that Aidan’s brain just works
differently than what a school typically expects. Aidan marches to his own
drummer, and is a beautiful soul because of it. His weakness is that he is
good. He is so good, down to his very bones. He wants to be good, he wants
people to love and accept him, he wants to never do anything wrong or
disappoint anyone. And when you’re a round peg and the world is trying to jam
you into a square hole, things don’t exactly go smoothly. You start to realize
that you don’t have the sharp edges the rest of the world has, that fit exactly
into that square hole for so many other people. You begin to realize that your
smooth sides and colorful exuberance for life are not what is valued. That’s a
sad realization, and it’s one that can change your very existence if you sit
and stew in that knowledge. I don’t want Aidan to be changed by the world’s expectations
that he cannot meet because of his genetics and neurology. He is so beautifully
him.
So advocating I am doing. On and on with the advocating. It’s
so maddeningly difficult to get the world to understand the nuances of these
invisible disabilities. There’s a diagram explaining Tourette Syndrome that
likens it to an ice berg. Above the water, what is visible, are things like
tics, lack of focus…things people can recognize. Hidden under the disguise of
the water, the ice berg is a monster. It looms with all kinds of things that
are hidden deep in the brain that are not available for people to easily see
and understand. Things like sleep disorders, sensory issues, mood issues,
anxiety, Obsessive Compulsive Disorder, learning disabilities…all of these
things are smoldering around in one body, one brain. It’s incredible that
people with special needs like these can function at all, let alone do so
relatively well. It’s just extremely difficult to help people understand that
the reason my son acts a certain way- like for instance always struggles with
homework: bringing it home, doing it, turning it back in- that’s not because he’s
not motivated to succeed. He desperately wants to succeed. Instead it’s that he
doesn’t have the skills to succeed. He needs to be taught, in a different way
from his peers, how to do those things. Many kids can pretty easily pick up on
how to organize themselves in school. Other kids, like all of mine, need to be
taught in a more purposeful manner.
We’re meeting with the school soon to “brainstorm” about ways
to help Aidan succeed. I’m all for brainstorming. I’m willing and eager to do
anything and everything on my end to help my kiddo. But, there’s a time for
brainstorming and there’s a time for just storming. Storming the castle, taking
no prisoners, making it happen and not just talking about it anymore. I feel
like I’ve spent the past three years brainstorming on Aidan’s behalf, and we’ve
made no real progress. And now I’ve witnessed what can happen when a gentle
soul doesn’t get the help he needs in school, or gets it way too late. I’ve
seen firsthand these past few months how that can cause a build-up of stress,
anxiety, fear, and an inability to function. It can even bring on physical,
medical issues. So as long as I’m alive and kicking, we will not be doing this
again with another kid, where he falls into such an abyss that it takes months
of extreme support in order to get him back into living Life. I’m willing to
give brainstorming one last shot, but then I’m out. Brainstorming Time is done.
We need some major action now before my little boy follows in his big brother’s
difficult footsteps.
And then there’s little Miss Ella. We went to the play at
the high school a couple weeks ago. It was “Peter and Wendy,” a take on Peter
Pan. There were there actors that played the role of Peter, only one of which was
a boy. During the play, Ella had to go potty. When we got into the bathroom,
she held my hand and whispered, “I saw Peter! He was in the hallway! He smiled
at YOU, not FAIR!” I laughed. After the play, the actors lined the hall and
gave the audience high fives as they exited the auditorium. We got to the main
doors to leave for the night, when Ella insisted that I take her all the way
back to the auditorium so that she could give Peter a high five. It was so
adorable, it melted my heart. But wait, it gets better. I found Peter. I picked
Ella up because Peter was very tall and I knew Ella wanted to look him square
in the eyes. I asked Peter if he would give Ella a high five. Of course, he
smiled and gave her a high five, and took a moment to talk to her. As she looked
at him, speechless with wonder, I swear, she blushed. It was the cutest thing I’ve
ever seen. But wait, it gets better. On the way out to the car, Ella was
positively giddy. She was gushing about the play, about her favorite Peter. She
climbed in her carseat and I buckled her up. As we pulled out of the parking
lot, Ella was holding her hand that touched Peter’s in front of her. She sighed
and announced, “I am never, ever, ever washing this hand again. I’m not even
going to ever SWIM with this hand again.” This girl. She is pure magic.
I took Ella to a friend’s birthday party last weekend. It was
pretty far away, and on the way home she had to stop and go potty. I pulled
into a gas station and we found the bathroom. Why do my children take SOOOOO
LOOONG to go to the bathroom? They can’t even focus on doing that! So Ella is
sitting on the pot, dawdling as usual. It was raining outside, we’d been at a
pumpkin patch for a lovely- although soggy- party, we still had a ways to go to
get home, we were down to one car because Alex’s was in the shop being fixed, I
had to get groceries for the week, I had to make sure everyone got showered and
finished their homework before bedtime…I was stressed. Impatiently, I urged
Ella to hurry up. I told her desperately, “Please try to concentrate on going
potty.” Ella put her head in her little hands and mumbled to herself, “Ok…don’t
think about unicorns…” oh my gosh, I can’t even. This little piece of magical
perfection. She spreads little pieces of starry glitter wherever she goes.
1 comment:
I love you. I just do.
You don't always have to see the glitter and rainbow through the tantrums and tics...but you DO.
I was amazed to learn more about Tourette recently - very much like autism, it seems to me, and another one of, yes, those invisible disabilities that adds to the challenges of advocating and LIVING...
Wonderful mom, hang in there. Maybe one day we will both get a full night of sleep. You know what my great idea was? Get a puppy. because things around here are so mellow and also we are rich.
ZZZZZ
Full Spectrum Mama
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