Yes, this is in two parts. Too long for one post and I don't want to bore anyone. So I'm breaking this into two, and the second half will be posted tomorrow.
It’s 7:30 a.m. and I’m sitting sipping my coffee on the
couch in the playroom, tapping away on this computer as Coleman rotates between
the t.v. and his guys. I love Saturday mornings,
particularly those like this when neither of the girls has to be at an early
game or practice. With the girls still
asleep and Billy out at an appointment, Coleman and I have the quiet pleasure of
each other’s company. “Want to Play with
me?” I ask. “No thank you.” Coleman’s language nearly always includes
please and thank you. Even when he has
to do something he detests, like get a haircut.
He’ll adamantly announce “No Thank you.” This morning I push again, “How about a
puzzle?” “No thank you.” “Want to draw?”
“No thank you.” He is glued to his show,
dancing and speaking in unison with Steve from Blue’s Clues. I let him play, because I need to write this
entry, and I’ve already learned, writing a blog means completely and entirely
ignoring your children.
When Coleman was little, he wasn’t much into toys. Not balls, squeaky toys, cars, rattles, or
blocks. For his first birthday, we
bought him a small plastic train set that ran with batteries on a small circular
track. It was the first toy Coleman
found any interest in. He could push the
button and watch it go round and round. Soon
he discovered he could pick the train up off the track and the wheels would
still spin. He touched his index finger
to the spinning wheel and it continued to spin.
He loved that. It was the first
type of “stimming” he did. Of course, we
had no idea. We were grateful he liked the toy, however silly his use of it
was. But after a while, I would eye him
sitting on the floor, the train tucked in his lap, and his finger on the wheel,
not smiling or laughing, just holding the train. I felt my heart drop a tiny bit. Something seemed off. But everyone seemed to keep saying boys were
slower, boys are different so I tried to ignore the suspicion that something wasn’t
right. As time went on, however, Coleman
spent more and more time with the train.
No matter what you put in front of him, he would crawl away back to the
train.
Around this same time, Billy and I had planned a trip to
Disney for the girls – they were four and five years old at the time and
ridiculously huge princess fans. We knew
this was the perfect age to bring them to Disney - but not ideal age for
Coleman who was just a year old. My
sister and mother were going to keep Coleman for us – they were excited to have
him for a few days – and we were excited to have the girls alone for a few
days. To this day, that trip was the
absolute best thing we ever did, and without a doubt my favorite vacation of
all time. It was when we came home –
absence opens your eyes to what you get used to seeing everyday – that I could
see the distinct delay in Coleman. I was
surprised – was he like this before we left? I asked my mother and sister and
they were relieved I saw it too – they knew after just a couple of days with
him – we needed to call Early Intervention.
The therapists from Early Intervention came – they said he
qualified for help in speech and motor skills – but surprisingly they felt intellectually
he was on track. They said they would
work on a plan and bring it back to us two weeks later. As luck would have it, the day before they
came back, Coleman was diagnosed with Leukemia, admitted to Children’s hospital
and Early Intervention suddenly seemed vastly unimportant. Over the next two and half years, any attempt
at intervention was futile – he was just too sick and weak to participate. At treatment’s end, and the ensuing Autism
diagnosis shortly thereafter, Coleman was ready to pick up in the exact spot he
had left off three years prior.
The school sent a BCBA therapist to work with Coleman three
days a week. He also started to attend
some mornings at the Integrated Preschool.
I felt helpless and sad back then, but relieved to let someone else take
over. The therapist seemed to be confidant
about what needed to be done and started working on simple tasks. Stacking two blocks, putting shapes into a
shape sorter, pulling plastic beads apart.
It was hard for him. He was
incredibly weak physically, and even the smallest of demands seemed exhausting
to him. But his therapist was patient
and good, and I could tell she adored him too.
In some areas he seemed to make better progress than in
others. And that fall, when he was ready
to attend 5 mornings at the school’s Integrated Preschool program, they stopped
his home services. Looking back I didn’t
care. I thought it was all too hard for him.
I felt like three hours of school was enough – it was so much work for
him, emotionally and physically. And I felt
like he deserved a break. I know now
that was a mistake. But the truth is, I
felt badly for him – I just wanted him to be happy.
Play continued to be a primary focus through all of the
plans, but even as he made advances in speech and motor planning, play skills remained
well behind. He was unable to play a simple game of tag, of
hide and seek; unable to toss a ball, and certainly unable to push pedals on a small
trike. He would not pick up a matchbox
car, slide it along the floor and say “Vroom!”
He couldn’t stack a pile of blocks nor slide a crayon across a piece of
paper. The school assured us many other
steps led to play – and he would get there, but it seemed to me a distant
hope. His only enjoyment was his shows –
The Backyardigans, Dora the Explorer, Go Diego Go, Blue’s Clues, Dragon
Tales. He watched them over and over and
it seemed it was the only time he smiled.
So of course I wanted to let him watch them all the time. Another mistake.
On Coleman’s fourth birthday, we bought him a Backyardigans
Birthday cake, which came with three Backyardigans figurines as cake-toppers. Coleman was intrigued by the figures, and immediately
took them in hands and held onto them all day.
And thus began his love for his ‘guys’.
Of course, seeing his interest in something tangible was exciting for
us, and we quickly populated the playroom with more figures than was at all
reasonable. Despite the masses, he has
his core group of 5, the Fabulous Five. They
now have capes (one day he wanted them to be superheroes like one of his shows)
and scarfs (I was making a blanket and he made a scarf for them) but otherwise
they are the same guys we started with five years ago. His only play for years was lining up these
guys, spending hours at a time to get them in a perfect spot. He still does it, many, many times each
day.
Those 5 guys are his best friends, and they have saved the
day for us on more than one occasion. So
we were all sickened when several summers ago we thought we were down to a
Fabulous Four. We were out on our
street, playing Dodge ball. Coleman didn’t
play, but he loved to watch everyone run back and forth. He had the Fabulous Five with him – they were
lined up on the street beside him watching the rest of the kids. I’m not sure how, but somehow Coleman picked
up Tiger (one of the Fab 5) and accidentally dropped him and he rolled and fell
into the sewer. You can’t imagine the
scene. He was devastated, crying trying to reach into the sewer, pleading with
me “TIGER!” “TIGER!” There was a Black Bee’s nest right inside the
sewer (we realized this as we were trying to peer in and see Tiger below) so I
had to pull Coleman away as the bees flew out.
As you can imagine, this didn’t help.
He was so confused, just wanted Tiger and kept saying it with pleading
eyes, not understanding why I couldn’t get him.
By now Emma was crying and Abby was crying too, because they could see
the absolute confusion and pain in his eyes – why weren’t we getting
Tiger? I led them to the car and Coleman
was crying, looking back, saying Tiger over and over. I was telling him Tiger was taking a rest and
we would come back and get him in a while.
We climbed straight into the car and drove to two different ToysRUs
stores, Walmart and Target, trying to find the Little People Zoo set that Tiger
was part of. We had no luck and came home empty handed. Coleman kept asking and I just kept saying he
would be home soon, as I scanned the internet and Ebay for Tiger. As evening approached, it started to rain and
Coleman just kept quietly asking “Tiger?”
I’ll tell you it was heart-braking.
As I looked out the front window, I could see a light shining over the
sewer. I peered through the window trying
to see what it was, but the rain was heavy and dark and I gave up. And then, around 9 pm, the knock at the front
door. There stood my neighbor, Kevin
Bird, soaked in rain, holding a fishing rod, a pail, and Tiger. Best. Neighbor. Ever.
And so the Fabulous 5 were reunited, and remain together
still. We are extraordinarily careful
with them now.
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