Life with Athena

Chatting with a friend who happens to have been a behavioral therapist for children, she said something along the lines of, “and your blog is going to be such a great resource and encouragement for other parents who have gone through or are going through the same thing!” Then I realized that I actually don’t have any posts on here about Athena and our journey with her therapy, SPD, etc. I’m circling back and writing this intro. Initially when I started I wasn’t expecting to have so much to say. One post turned into two. But then that post got long, and it has now turned into 3 parts. So here is Part I of our journey with Athena.

Hind sight is always 20/20 and looking back there is so much I now recognize as “signs.” For starters, she nursed constantly. I mean that in every literal sense of the word. Upwards of an hour at a time. I had months where she nursed 5,000min +/- just a bit. That’s almost 4 solid days of nursing. I thought it was just newborn life. We didn’t sleep. Really. We didn’t. And again, I thought that was just newborn life.

She was clearly very smart, inquisitive, and developing completely “normally.” But at 18m she still wasn’t talking. Sometimes we’d get a “mum.” But that was it. Bedtime was traumatizing. Truly. 2 and 3 hours of her screaming and thrashing. I still get sweaty and upset just thinking about those nights wondering why it was so hard. I had nannied and babysat kids for over a decade. I didn’t remember any of them acting like this. She was over-stuffing her mouth when she ate. Everyone would tell me to bath her before bed. The warm water was relaxing! They would look at me like I was insane or doing something wrong when I’d tell them, “No. She gets excited. It wakes her up.”

At her 18m appointment we decided to have her evaluated by early intervention. I wasn’t “looking for a diagnosis” but as a teacher, figured even if she didn’t qualify, if for some reason she needed testing down the road, we would at least have a semblance of baseline.

Our evaluation was great! Our evaluator was super sweet. At the end of it she and the case manager had a conversation and came back with their “findings.”

Athena was clearly intelligent, but she didn’t score that way because of her lack of language. On top of it, they believed she was dealing with some kind of sensory processing disorder, and thought she would do well with services.

It’s a funny thing qualifying for early intervention. There’s a twisted relief that you’re not crazy. I don’t want to say, “it feels good to know something is wrong” because she isn’t broken, and it’s not “wrong.” But different, for sure. As a mom, as a teacher, as someone with a lot of child care experience, it was affirming that I hadn’t done anything wrong. It was affirming that I trusted my gut instead of saying, “oh she’s just 18m wait until she’s 2 or 3.” Or my favorite: “all kids learn at different rates!” All very true….until they aren’t.

In the immediate we started with occupational therapy and special instruction. I’m sure just about everyone has an idea of what occupational therapy is, but I’d never even heard of special instruction. It turns out, it’s kind of a jack-of-all-trades therapy. A bit of speech. A bit of behavior. A bit of occupational.

From occupational therapy it was determined that she has proprioceptive sensory processing dysfunction. She is sensory seeking, and a high intensity child. What does that mean? Well, here is a few pretty little charts about how we help her manage.

She also happens to have low reception to pain, which actually means she has a high-pain tolerance. She does feel pain, but it takes a lot for her to cry or even say something.

Here are some real life examples:
Most children love hugs. To fill her “love tank” hugs are great, but don’t meet the requirements of her brain. In order to get the same amount of fuzzy feelings *normal* kids and would get from a hug, Athena needs a bear hug.

This Spring Athena was in the livingroom playing. Ethan was sitting on the couch attentively watching and playing with her. I walked out of the livingroom to pee; I was about 9m pregnant. She was next to the couch at her play kitchen. She walked over to Ethan, held up her foot, and said, “Daddy, hurt. Blood.” At which point Ethan goes, “Anna, she cut herself. There’s a lot of blood. Like, a lot.” I’m typically a “rub some dirt in it” kind of parent, but a 2 second evaluation and I immediately knew she was going to need stitches. Any deeper and it would have hit tendon and been an ER trip instead of urgent care. 2 stitches, and she didn’t cry until he stuck her with the needle to numb the area. If you aren’t squeamish, scroll to the second pic.

Some other “Living with Athena” examples:
Before bed, to help Athena calm down, and make sure her sensory tank is full, we have done, and still do, things like joint compressions, gently swinging her in a blanket hammock style, limb massage- torso out, not appendages to torso. Oil up.

Throughout the day, starting at breakfast, every meal is somewhat strategized to give her a variety of texture and flavors: spicy, tangy, meaty, salty, sour, sweet, crunchy, smooth, squishy, gummy….this helps her get the oral stimulation and satisfaction she craves. When it’s lacking, she stuffs her mouth in an attempt to get a “full” feeling and meet that need.

Similar to her pain tolerance, she has a low reception of auditory input, which actually means she needs higher levels of sound for her brain to respond *normally.* Most of the time I sound like a crazy person yelling at my child. The reality is, I know how to raise my voice without raising my blood pressure. 9/10 I’m not even a little angry or mad- I’m just being LOUD so that she acknowledges and hears me. She can hear perfectly fine. Processing and responding to me is a little more optional. Outside of just being 3, she herself has about 1 volume- LOUD. Which has been a fun challenge having a new baby in the house.

Athena likes heavy work. She has been helping me carry the milk into the house for well over a year. Ethan’s sister has 5lb weights in their livingroom that she picks up, one in each hand, with ease. She loves helping me garden and do yard work. When we got our dirt delivery last Spring, she easily helped move about 1/4 of it. Shoveling dirt in the bucket, carrying the bucket to the garden, and then she even raked the dirt out.

Getting her sensory needs under control and more or less figured out, meant that her brain now had the space to start learning language. I will talk about that process in my next post, as this one is already quite lengthy.