Musings of a Marfan Mom

January 18, 2012
by marfmom
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Close Shave

While we’re settling into our new home, I’m featuring a few guest bloggers. Today is Jeff, who writes about living with his 13 year old son Alex, who has autism.

All of a sudden my son Alex has a line along his upper lip. At first, like every parent of a boy pushing 12, I assumed it was dirt. Then I assumed it was shadow. Then I realized that Alex is getting older and older and older, and another milestone was gone.

He has a pencil line, like Matt Dillion’s in Something About Mary, a line that curls around the corners of Alex’s lips. I feel like I’ll just turn around and Alex will soon look like Burt Reynolds in all those pin-ups from when I was about Alex’s age. I’ll have to remember to get Alex gold medals and necklaces to hang in his chest hair.

He has hair in other places, too, but I decided long ago to confine most of my writing to the stuff above his waist. Alex is also getting taller: He’s up to the back of my wife Jill’s neck now, and has once again pulled half a head ahead of his typically developing little brother Ned. Alex is also getting stronger: When he doesn’t happen to want to go somewhere – and being autistic he often doesn’t want to go somewhere we want him to go – he plants a stiff arm on the doorjam and is mighty hard to budge, even for me. Jill’s ability to handle him is slipping faster than mine, which I don’t like to think about for kind of the same reason I don’t like to write about the hair below his waist.

So, we’re off to shaving. I shave, of course. Nobody taught me to shave, as my dad died when I was 12 and one Christmas mum simply gave me a blocky Remington that missed about everything under my jaw. Sometimes today I use a blade – triple-blade razors and pricey shaving gel have changed my life – and Jill shaves her legs with my razor when I’m not looking. We will not use triple-blades on Alex.

Jill’s first thought, however, is that we should also shave his eyebrows – or eyebrow, as he as one, and it stands out as what we think is an unnecessary badge of his condition. My electric Norelco has a pop-out blade that should be just the right width for brow work, but I hope the exercise doesn’t go like the shaving of Mike’s mustache on “All in the Family.” He showed up in one episode bare-lipped, and said that he’d started trimming one side, then took a little off the other side to even it out, then took a little more off the first side to even it out, then took a little more off the second side to even that out, then suddenly he had no hair. Alex needs two eyebrows. Not one, you see, but two. Funny how I never imagined I’d have to think about stuff like this for my son.

Alex watches me shave; he never used to, but now he sometimes appears in the mirror behind me when we hears the whir. “Alex, want to shave?” I hold the razor to his upper lip. The vibration reduces him to the giggles of a tickled child.

Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, the Lostandtired blog, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

January 16, 2012
by marfmom
1 Comment

Quick Update

Getting a house ready sure is a lot of work! Painting and cleaning has taken longer than Mark & I had thought, but we’re having fun with it because holy cow we actually own a house! Our stuff is arriving early this morning (surprise!) so it’s going to be an even busier next few days as we scramble to finish painting the Menininho’s room (we’re hiring someone to do Baby J’s room & the basement) and unpack everything.

I do want to give a little shout-out to the company Simply Thick too. Do you remember the video of M washing his hands in it? In a matter of minutes, he’d gone through half of Baby J’s new bottle. J needs that thickener to drink any fluids (other than nursing) due to his penetration/aspiration. Well, within 24 hours of posting the video I was shocked to receive an email from a representative from the Simply Thick company. They’d seen the video, liked it, and wanted to replace the product that M had used smeared all over everything. There weren’t any strings attached. Today we came back to my inlaws’ to a large package from the company. It contained some bottles to carry around beverages that we’d pre-mixed and 3 containers of Simply Thick. I couldn’t believe it! And while like I said, they didn’t ask me to mention them on the blog, write a review, etc., I am so impressed with their customer service that I want to publicly acknowledge it. Thank you!

Tomorrow I’ll post some pictures of the work we’ve been doing on the house, on Thursday we’ll have a guest post, and Friday is the usual Friday Favorites linkup. Hope you all are having a great week! 🙂