Tuesday, November 27, 2012

Here we go!

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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