Exceptional children deserve exceptional parents.
Instead, my kids got me. I am the clueless and totally winging-it mother figure to Jack* (8), a high-functioning resident of the autism spectrum, and Charlie* (6), who has developmental delays due to an ongoing battle with cancer. (She is doing fine right now. Although not in remission, she is off treatment and doctors continue to monitor the size and activity levels of her tumors. Keep your fingers crossed.)
Together with their pretty amazing dad, Terry** — an actual Scotsman from Scotland — we live in North Carolina.
This blog is not meant to serve as a how-to for parents, unless you are interested in psychologically scarring your kids for life or getting a criminal record. In that case, take notes.
*not their real names. Their real names are Byron and Margot.
**real name: Guillermo
Your father sent this to me and several other people in Philly. I am an editor at the Chestnut Hill Local, and I am blown away by your stories. I would love to print some of them in the Local, starting with “He’s no Rain Man.” Could I have your permission to do so?
Hi, Len. That would be great. I’ve sent you an e-mail under the heading “Unexceptional Parenting.” Thanks!
I read the article in the CH Local and had to immediately go to your blog to read all your articles. Absolutely wonderful! I laughed at your hilarious sense of humor and cried at all the moving, sweetly loving parts (which you still managed to make funny) of raising your two beautiful children. Amazing, wonderful blog.
Thanks very much. Great comment from Rene.
As I said, you might have a book here.
Thanks so much, Rene! It means a lot to me!
Hi, Amanda. My first reaction when I read your YMCA article was anger. My daughter is a trainer at YMCAs in our Wyndmoor, Willow Grove, Abington & Roxborough area. I asked her and she said there are no portraits of Jesus at the Ys where she works and the only thing close to what you describe is a prayer box where, if someone wants to, they can write out a prayer for someone (or something) and put it in the box.
But, then I read your short bio at the end of the article that made things a lot more clear. My daughter has two sons with autism. The older one, “John” who’s10, is high functioning although he definitely has some issues – one of which is anger (due to frustration, I think). The other one, “Matt” who’s 8, is at the very bottom of the spectrum. He needs constant monitoring and frankly doesn’t know what planet he’s on. He’s in a special class in public school and receives care several days a week from a therapist and is progressing somewhat. He was non-verbal but can now speak, to a degree – and, can recognize things, minimally ask for what he wants (like cereal, etc.) but, he’ll never develop much more than that. In fact, at some point as he gets older, the likelihood is that he will need to be placed in a special facility to receive the care he needs.
Meanwhile, my daughter has three other young children – all “normal” (and, I use that word in quotes, because there is no such thing as normal in my book – only average. So, the challenges of life caring for the 8-year old impact everybody.
I think a good resource (if you haven’t already used it) is Autism Speaks – not just for advice, but for support. The 8-year old is scared of everything – particularly change. The other day, my husband had to go to our daughter’s house to let the boys in after school because my daughter was working. the boys normally get off the bus and go up the sidewalk and into the house. But, because he saw someone different waiting for him (and he knows his grandfather very well – hugs him, holds onto him normally) – Matt would not come into the house. He just stayed in the front yard until my daughter got home.
I understand a lot of what you’re going through – of course, not everything because it’s my daughter who faces these daily challenges – not me. And she needs to parent on a very broad spectrum – oldest girl is 14. Next oldest girl is 12 (one in puberty with raging hormones and the other about to be) and youngest son is 5. So, it’s definitely a juggling act in their house.
I really think that the NC YMCA is trying to do the right thing with their little messages – trying to instill kindness, fairness and other admirable traits in the kids who go there. And it sure is important to keep a positive attitude and keep trying when you have a goal. In fact, I call myself an “alphabet planner” – if Plan A doesn’t work … there’s an infinite number of other options.
One other thing stuck out in your article – that’s the part about buying something before someone else buys the last one. My grandmother used to tell me that often she’d see something in a store window that she really wanted – but, she was poor in those days and couldn’t afford it right then. She’d say, “If I’m meant to have it – it’ll be there when I go back next week.” Good message, I thought.
Anyway, email me if you like. It sounds like you get a little overwhelmed. The blog is good but it may not be helping as much as a conversation or maybe some expert support from those who are more expert – like Autism Speaks.
FYI – I also write for the Local – visit the website and search on my pen name – J. L. Sloss – to see my articles.
Hi, Judy! Thanks for the feedback. It sounds like you and your daughter are dealing with a lot and I appreciate you reaching out to me. As far as our local YMCA goes, the whole article is really just meant to be a joke. I have absolutely no problem with the “Thought for the Day” concept, I was really just poking a little fun at it. My kids live for those little pieces of paper (even the younger one, who can’t read), and anything that makes my kids happy makes me happy too!
Thanks very much. Great letter from Judy.