Sunday, January 24, 2010

Seven Minutes In The Life Of M

I was originally thinking of doing a very short entry that read as follows:

Thanks for calling. We're sorry we're not home right now...we've all gone stark-raving mad!

And then I was going to leave you with a short video of my boy making THE.SOUNDS he makes 99.7% of every single day lately that have us all loony, nervous-like wrecks.

But I'm not really good at sticking to my plans. And I'm certainly not very good at being concise and to the point. So when I began shooting my little video on my sweet new, Mino high definition Flip video camera, well, let's just say it turned into a seven-minute documentary that you may or may not feel the need to watch after reading all of this.

I questioned myself for a moment when considering putting this here for such public viewing, but because I know it has helped me numerous times to see videos of other children like M, (whose name I totally spill in the video-doh!), I thought it might be beneficial for some of you readers as well. Not only might you feel oddly reassured that someone else's child has similar mannerisms or sounds to your child, but my close friends and family who don't necessarily see this side of M--or who don't really see M in person at all--can get a little better vantage point of what life can be like around here.

That said, I do feel the need to let you know that M most definitely is more than the sounds, flapping arms, and pacing that you'll see in this 7-minute clip. There are moments of clarity and quiet where he surprises us with a few longed-for words or his amazing, dimply smile. But it seems like with the regression we've seen over the past almost-two-years, our boy offers less and less of what I know is lurking somewhere deep inside him still. He doesn't seem to find much pleasure in any activity other than the occasional book and, of course, movies. We did have a relatively sound-free couple of hours hunting sea glass and pretty rocks at the beach yesterday, but he actually freaked us out a little with his calmness. At one point he was so, so very calm that he just laid on his side in the sand--in a strange s-shape--looking nearly catatonic with his eyes open, but his body frozen. And no, I don't believe he was having any sort of seizure here, (because someone will inevitably ask), but the possibility that some sort of seizures may be occurring completely without our notice is starting to nip at my awareness.

*If any of you readers have discovered that your child is/was having seizures that you were unaware of, please, please let me know. I am very aware of what 'absent seizures' look like and know that M has never had one of these...but what if there are other types of seizures that have slowly damaged his brain over the last two years without any of us realizing it?

Well, before I start heading off on another tangent, here is the video from this evening...and the reason that the other half and I just might be a tiny bit more tense than usual lately...


Valerie Foley said...

Deb, it's lovely to see Miles, after all these years of hearing about him.

And while there's a lot different, there's a lot the same in our lives too.

I want magical powers to be able to get inside these guys heads, and unlock the doors. It's like watching someone go through one of those huge tree mazes, on the inside and the outside.

On much more trivial matters, man, your house is beautiful!

Thanks again, from across the Pacific.



Sunday said...

Oh my goodness he reminds me so much of my Noah! I am often considered making a video of him with all his funny sounds he makes...and he loves his chewy too!

Chloe's Mommy said...

Thank you for sharing this - it can certainly be hard to put the footage out there for fear of people's reactions.

My daughter is very similar, in that she is a perpetual motion machine. Her favorite way to stim is running back and forth from the front of the house to the back...preferably with a set of keys or other noise-making toy to flap in front of her face. It certainly can get nerve-wracking.

But I love knowing that there are other parents out there who understand.

fer said...

I appreciate your courage to post this--for friends of yours like me, who rarely see you and don't know Miles well, it is helpful to my understanding and empathy.

I love that sweet, inscrutable face. And I respect you so much.

Mama Deb said...

Thank you, everyone, for your comments. Truly appreciated...

Leah said...

I. Totally. Understand.

When ya gonna be in DFW? Let's go have a drink.


When you get a chance, email me personally.

Jenn said...

Oh that's my Devin except I think he's a bit louder.

I feel less lonely now as he's the only running back and forth vocal stimmer I know.