I really
don't know how to start this entry. I keep typing things and then erasing them,
because they don't sound right. So, I will just jump in.
I am Candace.
I have two daughters from my first marriage who are 12 and 9. After a bitter
divorce, it took me 6 years to come to terms with the fact I was done having
children and to give away all of baby items I hung onto.
It took me
6 years and 2 months to meet my future husband and to come to terms with expanding
my family and going through the baby stages again. Buzzy was born a year and a
day after we got married, my first son. Not too much later we also had a
daughter, born Valentine’s Day.
Buzzy is
(and was) special. My first son, and I had thought I would never experience the
joy of raising another baby, let alone a boy. Now that joy is somewhat
tempered. My son was diagnosed with autism on November 1st, 2012.
Seeing that in black and white still smarts. He also was diagnosed with CAS
(Childhood Apraxia of Speech) and SPD (sensory processing disorder) prior to
that. Co-morbid conditions. Lucky him.
I will get
into all of that some other time. For now, I want to document where my son is
right now. He is 2 years and 5 months old. Other moms with kids his age are
pondering whether or not they are going to tell their kids about Santa. I am
pondering which supplement I am going to get him to take next, or if I should
just wait till after his first DAN! appointment.
Buzzy scored
an 83 on the ATEC test* I took last week. An 83 is pretty high in terms of
percentile (somewhere around 80, if I am remembering). My priority right now is
getting him to communicate. At this moment, my son rarely uses functional
communication. I have to remember it wasn’t all that long ago that he didn’t
even imitate sounds (around this summer) and now he is. So, we have made
progress. But, I want more.
*The ATEC
is the “Autism Treatment Evaluation Checklist”. It’s a tool used to see if a treatment
being done is having any sort of effect. It can be found here: http://www.autism.com/index.php/ind_atec
Buzzy was
making progress over the summer with his SLP (speech and language pathologist).
She was a new one, and came to our home. He was picking up 2-3 signs a week and
even using them every so often. The first time he ever spontaneously signed to
me, he handed me Play-Doh and signed that he wanted a ball.
Of course,
I made him one. And then he made a sign. I couldn’t tell what it was, so I
suggested, “Drink?” Buzzy just stared.
“Water?”
No. Same look.
Ah, “thank
you”. My son was telling me thank you. It made tears come to my eyes.
Unfortunately,
even now, those moments are rare. However, he now will imitate sounds and say
words – or word shells and approximations. This makes working with him much
easier. And as long as he is contained in his booster seat and strapped in, he
works hard for his SLP.
His
receptive skills are still lagging, though. He can’t point to or choose a drawing
of say, a banana, when there is just that picture. Or when there are two
choices. I like to think he understands more than he is letting on, but that’s
hard to do when he rarely signs either. I just don’t think Buzzy “gets” language.
And that is a huge problem.
When we
went to the Kaufman Children’s Center it was suggested that he may have
cognitive issues. I think the day I was told that was far worse than the day he
was diagnosed with autism. I wanted to find someplace to hide where I could sit
and cry for a very long time. Instead I sat in the van while the two babies
napped and wished I was at home, not over 600 miles away. The sentence Nancy
told me that still haunts me is “even autistic children can do this task”. (She
didn’t see him as autistic – and she couldn’t diagnose him with that anyhow.)
I love
Buzzy. He seems happy most of the time. But, he is exhausting. And a lot of the
time I am exhausted from running after him and his sister. He can’t be trusted
alone with her for more than a few seconds. He has no concept of hurt or
danger. He tried crawling in the oven today. It doesn’t matter how many times
in the past he’s been told it’s hot, he will still open the door. So, if the
oven or the stove is on, there has to be someone guarding it.
I have
tried to set up the house so he can do the minimum of damage and be as safe as
possible. But, it wears on me to have a house that is so disorganized and
generally messy.
So, this is
where Buzzy is today. He has a short attention span. He is, essentially
non-verbal and non-communicative. He loves watching Gangnam Style on my iPhone.
(PSY is the only reason I can change diapers without tantrum and tears – his and
mine!) He’s not even close to potty trained. He has no sense of danger. He is
impulsive. And most of the time I wonder if he even knows what is going on. He
receives speech, OT (occupational therapy), and DV (developmental therapy) once
a week for about 45 minutes to an hour. I have him on DHA and omega fatty acids
(3,6, and 9). He takes a multivitamin, D, probiotics, and is on a GFCF
(gluten-free, casein-free) diet.
It has
become my life’s mission to help him get as close to NT (neurotypical) as
possible. I will do anything; pay any price to reach that goal. Autism is the
first thing I think of when I wake up, and it is the last thing I think of when
I fall asleep at night. And while I am generally a pessimist, I am an optimist
in this regard.
I have to
be.
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