It took me five years to get a BA in Clinical Psychology- I changed majors, schools and had my boys. I didn’t take a neuropsychology class.
I had a mini-stroke in 2013- a migraine went really bad. Afterward, I started having migraines, which are absolutely zero fun. They make me sleepy, cranky, nauseated and for some reason, crave sour candy.
I’ve worked with kids with developmental disabilities and have an autistic kid.
And yet, I know nothing about neurology.
Until a couple of days ago, I also didn’t know what could be going on with Lily.
If you need a refresher, please read these posts:
She’s currently in Occupational Therapy (OT) and seeing a dietician. Both have been extremely helpful. I was looking into getting her a full neuropsychological evaluation, like Julian had in 2011, but most places are full or aren’t taking new patients right now, because you know, there’s a global pandemic going around.
Plus, her insurance doesn’t cover a penny of what will be a very expensive evaluation.
She’s worth it, but honestly, I decided to sit on this idea until things get back to some sort of normal.
A Crash Course in Reflexes
A couple of days ago, Lily’s OT, Amy, tested her reflexes.
She tested positive for retained STNR reflex, and all I could say was “What is that?”
I’m not afraid to say that I don’t know something, because how else am I going to learn? In this case, I felt (and still feel) that I was way out of my knowledge base. We thought maybe severe anxiety and avoidance behaviors, she was even tested for ADD, which she does have.
Amy explained it to me in a simple way- there’s a reflex that babies develop between 6 and 9 months old. It should resolve before the first birthday. This reflex makes the top and bottom parts of our bodies work in sync to move efficiently. If the reflex isn’t resolved, this can lead to some developmental delays. For example, when you learn to swim, your arms and legs have to work together to do so.
Those who have a retained STNR reflex can’t swim well because they can’t get their body to work together at the same time. It’s a neurological issue that can’t be medicated. Lily will need OT for a while, and at some point, we hope that she can learn to ride a bike and other independent activities.
There’s a connection to ADD/ADHD for this, so it makes a lot of sense to me. It explains a lot of Lily’s issues and now I can somewhat meet her where she is.
On the outside, she’s a regular 12-year-old. She loves clothes, jewelry, blankets and boy bands (ugh). However, the way her brain works is different from a lot of other kids her age- she’s socially and emotionally immature, has core and muscle weaknesses, and of course, issues with coordination.
I am not sure what this means for 7th grade for her- she may or may not qualify for an IEP. She may need an evaluation through the school to do so. I’m also not sure if she will be able to live on her own without assistance. I have no idea.
She’s 12, but I have to think about her future. I may need to become her guardian when she turns 18. It’s a lot to think about and writing this post is helping me process it.
I wish there was more that I could do besides taking her to OT. As far as I’ve seen, there isn’t much anyone can do besides help her resolve this reflex and since I’m not an occupational therapist, I can only follow Amy’s recommendations.
I read up a bit on this and some of it went way over my head! I think I understand the important parts. We have answers, or the beginning of them, and that’s what matters.