Hindsight

Looking back, I guess the signs were all there that something wasn't right with the Buzz.

    I remember a mom in my online mom's group talking about her son at 7 months waving bye. And I thought of Buzzy, and how at over a month older he wasn't even close. I tried to reassure myself that it was because we never really went anywhere or had too many people over, so he just didn't have experience with waving bye.

    At 6 months, I started signing to Buzzy. Every time right before I nursed him, I would sign "milk" and say "nurse, nurse, nurse!" just like I did with my girls. He never seemed to notice that I was signing to him or that anything was about to happen. After a few months of no reaction, I started signing less and less, until I just stopped except for every so often. There was no point to signing to someone who just didn't even seem to see what I was doing.

     By the time Buzzy was a year, I was truly worrying. He had no words and few sounds that he made. His pediatrician did a referral to Early Intervention. The wheels of government programs move slowly, though. He turned 1 in June. In October, he finally was evaluated. He met the criteria for an expressive language delay. He tested at around 7 months, when he was 12 months. There may have been an area where he tested at 6 months. Everything else at that time was on track or even ahead for him. Receptive language was good as were fine and gross motor skills.

     Once I knew he needed speech therapy I started going nuts. I wanted him to be in speech ASAP. However, we needed a spot to open up for him. Forget someone coming to the home - I would have to drive unless I wanted to wait even longer. And that was not an option.

    Finally, after almost 2 months of waiting (and a lot of phone calls on my part) we were able to get him into therapy. I had even tried to find private therapists, but was unsuccessful. At the same time, I was also waiting to get his hearing tested. And waiting. And waiting. I found a private audiologist and took matters into my own hands. We paid out-of-pocket and got his hearing tested.

     Buzzy failed in his right ear in December. But, since he had normal hearing in his left ear that wasn't the reason for his lack of speech. He was re-tested in January and he passed in his right ear. Perhaps he had fluid in December or an extra amount of wax. I had been afraid he might have hearing loss, but now I was back to square one with no explanation.

     Speech therapy continued every other week with little to no progress in his speech. His therapist suggested we increase his therapy to once a week, which I readily agreed with. I continued to do research and started learning about apraxia. It sounded like something he might have, but his therapist insisted no one diagnosed apraxia before 3.

     Then Kylie, Buzzy's SLP went on maternity leave. She was replaced with Amy. Then an opportunity came to have an SLP give services in our home, which I jumped on.

     Chelsie was fantastic. Buzzy began to make progress and was doing so well. Chelsie was great, and I dreaded the end of the summer when we would go back to Amy. I continued to read and learn about apraxia.

    Then, the dark days. We had to go back to driving and back to Amy. I don't know much about speech therapy, but while Buzzy blossomed under Chelsie, he did nothing with Amy. Gone were him learning 2 signs a week. Gone was any kind of progress. It was at this time I learned of the Kaufman Children's Center. And I knew I wanted Buzzy to be seen by Nancy.

    I put in a phone call and arranged to have one of his sessions with Amy recorded. I then sent the video to Nancy and waited to hear from her. I figured the worst she could say was that she couldn't help us. But, she didn't say that. She said she thought they could help him. (She also asked what sort of technique Amy was using and then I snorted and said I'd wondered the same!)

     We made arrangements to have Buzzy do a 4 day intensive speech therapy program at KCC in Michigan in October - almost one year after it was determined he even needed services in the first place. Around this time he reeceived a follow-up evaluation from EI. Now he was even more behind in expressive language. And behind in receptive language. And lagging in fine motor skills. And adaptive and self-help.

     Instead of re-qualifying for just speech, we now had a couple of other areas that needed addressing. And it was at this point that on my bad days, I started to wonder if there was really something more wrong.

     I kept telling myself (and letting others' observations reassure me) that it wasn't autism. It couldn't be autism, because Buzzy made good eye contact. Looking back on that - he made better eye contact when he was younger. As he got older, that was diminishing.

     We were losing him, and we just didn't know it.

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 1^st, 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.