J-Bear and Me

learning to navigate the world, j-bear style

Rambling Weather

Someone forgot to give Mother Nature the memo on spring. I am not nearly as irked as it feels most of the rest of the world is on this count, for I am not one for warm weather for too long, but all in all it feels weird to be at Fenway Park for baseball when it feels like hockey weather.

Despite having regretfully left my position at Fenway for this season I did work a couple games this week and will work one upcoming game. I love the place. I’m excited to be attending as a fan later this month for Autism Speaks night. It’ll be J’s first actual game as a fan despite all his time spent within those hallowed walls. He has his own ticket and will be Mister Big Man, marching about… wearing a harness for his own safety, of course.

Today I attended “Parenting a Child with Autism: Putting the Pieces Together”, a conference for parents put on by Endicott College Institute for Behavioral Studies. The conference was quite, quite good. The keynote speaker, Margaret Bauman, MD, is the Founding Director of the Lurie Center for Autism at Massachusetts General Hospital. If you ever get to see her speak I encourage you to do so. She peppers the information with amazing anecdotes that make her material relateable. Today’s topic was Disruptive Behaviors and Medical Co-Morbidities. 

I needed this topic.

Children with autism, as most parents come to learn quickly, do not manifest symptoms of physical ailments in a typical manner. A neurotypical child of my son’s age could at least give you an inkling that his ear hurt, his throat hurt, his stomach hurt… A child with autism, be they verbal or non-verbal, cannot localize the pain and discomfort they’re feeling in a manner that allows them to identify it easily to you. They know something is not well, but expressing it? It comes out sideways.

My son’s latest illness showed itself before it made a major physical manifestation. The Friday previous, he was completely off in all his therapy sessions. We chalked it up to Friday-itis and being tired of a week of therapy. Looking back, it wasn’t entirely a wrong judgement, but going forward I know to pay mind to these patterns more closely for by Monday night we were in the ER for croup. He knew and could not tell us. Most people and most medical professionals can, and will, chalk up erratic behaviors to the child’s autism diagnosis. It’s our job as caregivers to stop them when we can see that it might not be entirely the case so our loved ones get the care they might desperately need to feel better.

I also attended a seminar on feeding by Christopher Perrin, Ph.D., BCBA-D, from Melmark in Pennsylvania. He was an excellent speaker! He gave a very clear, detailed but not overwhelming workshop on challenging feeding behaviors, how to identify the problems and how to work on solving them. He unabashedly stated that parents can be out of their depths with this and that that was absolutely okay, that there are professionals out there who can lend assistance alongside the child’s medical care team. I’ll go into detail on techniques offered another time as I try and sort out how to integrate them into the little bear’s life.

One cannot live on PB&J, chips, graham crackers, milk, yogurt and chocolate alone.

I feel bound up just typing that. 

This is what I’ve been keeping busy with anyway. J had an OT evaluation at the public school this past Wednesday. Poor OT, she’s a brilliantly nice lady – so nice J held her hand without prompting as we left – but he could not focus worth a damn. He stimmed on any and everything. It was insane. I am nervous about the whole IEP process but hopefully it turns out to be less of a demon than that which I am fearing. We’ll see.

To those of you who stop by to read… Hello and thank you for being there. 🙂

2 Comments

  1. So excited to read your post after taking some time to understand my new website. J’s first game! So exciting! We took my daughter when she was 4 months old….somehow I don’t think she’ll remember it. 😉

    So great that you are open to educating yourself continuously about autism. Your son is a lucky guy!

    • Congratulations on your new online home! I peeked over there… It’s looking great.

      I am very curious how he will react to the ballpark during an actual game that he is staying there through. He’s been spoiled with places to “hide” every other visit or just been there when the team is away and there’s no event, so this will be a learning experience for us both. It’ll also be nice to just be a fan, my butt in a grandstand seat!

      Education is my only coping mechanism. That and dying my hair ridiculous shades of red for my skintone 😉

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