I can't remember exactly how this all ran together and in which
order, but I remember Evan (aka the middle boy) had a basketball game, and it
was a playoff one, so a big deal. I had already missed his draft ceremony in
person and I refused to miss this important event. We all went, and I even sat
off to the side by myself with Dylan because I figured he was going to become
over-stimulated and I didn't want to disturb other parents. Because,
let's be honest, we've all been there. Somebody's kid is loud in a
restaurant, or talks loudly in the movies, and you are quick to judge they are
just 'bad' or 'obnoxious'. Guilty here on many occasions.
He screamed, he took his shoes off (this
is a big one for us that can cause me a many sweaty meltdown), he wouldn't sit
in the stroller, wouldn't stand. Picked dirt off the floor and basically
just squealed. I tried so hard to watch Evan play, but it was impossible.
I looked like I was teaching a toddler yoga class in the corner of the
gym, with a highly unqualified teacher and one irritable student. I was
defeated. Packed up Dyl and sat him in the truck. Turned on the
heat and let a Mickey DVD play while the snow came down, along with a few tears
of frustration and a few nasty words. The husband texted me to say he was
coming to trade places with me so I could watch the second half of the game.
And that's how life had seemingly become. Trade-off parenting. It
sucked. And it was taking a toll.
Around this same time (like I said, I
can't remember the order, but this is all within the past month), I had a
friend who had graciously offered to watch Dylan when I needed a break. We had
known each other for quite a while, as our oldest boys went to daycare together
until 1st grade or so, but something with Dylan seemed to spark something more
in our friendship, and to this day I am thankful for her intuition and honesty.
Her son was diagnosed with epilepsy at age 3, and she is a huge advocate for
awareness and an advocate for her son and other children with neurological
disorders. She spent time with Dyl while I would shop, or do a load of
laundry, or just run errands....she had heard me in the past say he had
'staring spells' and wouldn’t answer me or say any real words. She noticed a video I had posted on FB, and I
had posted it to show how cute I thought it was that Dylan was mimicking his
older brother. I know how hard it was
her to have that conversation with me, and when someone calls you and says “I
need to have a difficult conversation with you and I’m stalling…..”, my first
thought, being me, is “Oh shit. Now what have I gone and done?” With all seriousness though, she wanted to
point out a few things in the video where Dylan stops, stares and ‘shakes’,
also known as absence seizures. (Attaching video at end of this..) I, of course, had never heard of these, but
took what she said to heart and immediately called my ped the next day (who
also was her son’s ped).
Dr. K looked Dylan over, listened to me and suggested we go to the
Children’s Hospital nearby in the city to see a neurologist, get an EEG and
start Dylan with Child Development Watch (early intervention). I was familiar with CDW because my other
children had greatly benefitted from their services in their early years (one
for hyptonia, one for speech). Still, I felt
pretty confident Dylan was just a little behind on his speech and there was
nothing else to worry about.
We got into the neurologist within 2 days and the hospital was
packed. We had Dylan in a wagon, with
his favorite stinky blanket, the Ipad, Mickey mouse, and multiple snacks. He was not a fan of the waiting room, and
between my husband and I, we had another sweat session. When the doc saw him, talked to us, used the
M-Chat questionnaire, more talking, more trying to engage Dylan, etc. She handed us a sheet of paper that basically
said “Diagnosis: Autism Spectrum, active.” Said crisply, “I know that’s not what you
want to hear but good for you bringing him so early. You can still turn this around.”
Disbelief…relief…can those emotions run together? Yes, yes they can. I couldn’t believe my son, who is my eyes was
perfect, had this ‘label’. At the same
time, I was relieved there was a ‘label’ to give us understanding, help and
medical services. It was a long day and
a range of emotions, it’s still that raw sometimes to me here 2 weeks later.
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