Wednesday, May 28, 2008
Tuesday, May 27, 2008
Wednesday, May 21, 2008
Hand-over-hand, we pour in the water and replace the pot. Lately, he's even been trying to wipe up the spills & puddles we make! He watches patiently while I add the filter and grounds, then it's time for him to take over.
Even groggy (and, for the record, with no coffee in his system), by this time he's ready to pose for a picture with full-on jazz hands. What a ham.
Ahhh, simple pleasures...
(By the way, the droopy eyes are due to the camera's flash -- he's not THAT sleepy! The bus just came before I could re-take the photo.)
Saturday, May 17, 2008
Ok, so I could do without the clowns, but a PETTING ZOO? That's crazy! And right down Max's alley.
I was upset all over again, even though it was after the fact with no decisions left to be made! Apparently I wasn't quite as through with the guilt as I thought I was.
Thursday, May 15, 2008
I've been dreading it.
And Max? Well, I don't know. I assume they talk about it at school, but he's never tried to show me the handout and he has no other way to initiate communication about it at home. (I've avoided bringing it up because I've been on the fence about attending.)
Then again, maybe he doesn't even know about it. Or if he did, maybe he's forgotten. I feel safe in the assumption that it's not something he'll think about this weekend and feel full of sorrow for missing, at any rate.
He'd probably have a grand old time there. He loves jumping in a moonwalk. He enjoys music. He'd be excited by the entire dunk tank concept. He adores people and his school, and there would be many familiar faces there.
But there will also be tables of food. Lots of food and chips and drinks and cups. All within easy reach of his quick little hands. There will be hundreds of people and chairs and things to run into or behind or around. I can picture him clear as day in my mind, running up to random people with a big ol' grin and SMACKING into their midsections, as their plates jolt and drinks slop, and the men try to unobtrusively shield themselves, wishing they had worn a cup.
And I will be trying my best to keep up with him, and foresee potential problems, and steer him clear of danger or damage, while hissing through my teeth for backup but trying so hard to keep that smile plastered on my face and meet other families and kids.
But I know that this is what we need to do. This is why it IS so important to be there. I am not crazy about it, but I'm not there for me! He is a part of that school, and establishing a supportive family presence would be valuable.
Max is a well-known character in those halls, and I'm sure "his people" would laugh at my fears, and tell me not to waste another minute worrying! I mean, it's not like they've never met him before! They know how he can be....but, really -- he'll be fine!
But he does seem to pull out all the stops in situations like that, and many times a slightly different side of him does come out! The routine goes up in smoke, the stimulation is cranked up high, the temptations are everywhere (at eye level, no less!) It's hard. Really hard. For both of us. (Well, actually, for ALL us, but that's a different story.) His fun gets a slightly frantic edge to it, and he just can't reign it in.
And then? The AFTER-party effects. He comes home all wound up. He bounces off the walls, makes crazy noises, thinks everything's a game (Diaper? Catch me first! whee!). He stays up late. He's off schedule then the next day...yada yada yada...the gift that keeps on giving.
So that's the background.
Now then. You know how it is when you have something specific on your mind and then you start to see it everywhere? Well, in the last few weeks, while I've been fretting about this picnic, I've read several different things where parents of kids with disabilities are talking about the same basic topic.
First there was an email about a local restaurant sponsoring an Autism Awareness night, where families with autistic members were invited to come dine during set hours. The staff was going to be "prepared", the restaurant would be full of like families, and the environment would be welcoming. The flier acknowledged how hard it can be to simply go out to eat sometimes. (We didn't go, but I was really impressed by the idea.)
A few days later I was looking through a book, "The Elephant in the Playroom", which contains essays by parents of kids with special needs.* I flipped to the titles that seemed to reflect my own concerns, and the first two essays I read mentioned the difficulty of being in public situations with their kids.
The other day I woke up just feeling like I was through the Dread Phase, for some reason. There was no epiphany, no big pep talk. (I suppose it did help to read other parents' similar comments and remember it's not just me.) But for whatever reason, it was suddenly obvious -- Of course we'll go! The celebration IS a big deal; Max possibly being difficult is NOT a big deal. I had to stop and remind myself that each situation doesn't need to overwhelm me; it's just the accumulation that makes it feel that way. My priorities were all back in order.
Now, here's the ironic thing. I looked at the calendar and realized that we won't even be here! We'll be out of town! Apparently I was too busy with the hand-wringing and whatnot to notice that.
I do feel a little guilty that he won't be there now. But at least it's that wistful guilt that he's gonna miss out on something good, instead of the guilty guilt from playing hooky. Parenting is hard enough, but I find that there are all sorts of special rules and expectations and qualifications and consequences I add the equation when it comes to parenting Max. I mean, I wouldn't think twice about skipping my older kids' school picnic. No big deal! And the Mommy Guilt; it really has become the Jujyfruit blueplate special! I have got to start laying off the extra gooey layers of guilt with the order of overthinking cherries sprinkled on top; it's really starting to weigh me down.
But here's the positive thing that came out of all this: I feel good, like a passed some sort of test. I made the right decision, for the right reasons. The fact that we won't be there is almost irrelevant at this point. Now I can let it go. (until the next time, that is...)
So for now, have fun at the picnic, everyone! I'm gonna go enjoy my weekend, too!
*I will be coming back to this book in future posts. It had some excellent quotes, and some very chewy food for thought.
Let's see....tomato sauce. Cheesey something? Some grease... I'm gonna guess lasagna! But to make it more fun, I try to get Max to tell me what it was first. So I start to guess random school lunch items.
Me: Did you have....MILK?
Max: (nodding and grinning)
Me: Did you have....HOT DOGS?
Max: (nodding and getting excited)
Me: Did you have.....PANCAKES?
Max: (nodding more, still grinning, getting a twinkle in his eye...)
Me: Did you have....LASAGNA?
Max: (loving it, grinning huge, still nodding)
Once we get tired of the guessing part, I check the school lunch menu and then talk about what he actually ate. I ask him about each of those items individually, and he agrees and nods. We talk about those foods and high five. (then I get out the Spray-n-Wash)
So let's check, shall we? What was the actual menu for today?
Wednesday, May 14, 2008
There are just so many things I could say about Junior. And since life with him tends to get a bit blurry at times, I really want to use this blog as a way to record some events, situations, milestones, stories. There's a bit of that third child syndrome going on (you know, where the first child gets a photo of every single expression/outfit/event/month/new food and things are sterilized and the baby book is complete, but the third child gets a photo at birth and again on the first day of school, you pull hairs off the old jellybean he found on the ground and let him eat it, and there's more of a baby pamphlet?) but mainly I'm just too worn out to do much. (Why do I find time for that other blog? Well, after all these years of being a SAHM focused on the kids and staving off Brain Fog, I'm selfishly enjoying my new bloggy toy; it's stimulating & creative & makes me chuckle.) But I still don't want to forget those Junior moments.
The other motivation I have for doing this blog is that the internet has been a major lifesaver for me since Junior came into our lives. When I learned he had a diagnosis and a disability, I could literally find nothing in our local library but one small paragraph (hopelessly outdated and dismal) about microcephaly in a medical encyclopedia. But the internet was a veritable goldmine. I found great information online, but the vast majority of truly helpful information I got was from other parents! Parents who also happened to be online.
Through the internet I found support groups and made some really great friends (hi, Moles!) that I communicate with regularly. And one of the things I have really valued about those connections is catching glimpses into their daily lives. It's less about comparisons (profound/mild, easier/harder, worse/better) though, and more about that sense that we are all on this journey together. We are a village, and I have found it really does take one!
I am always curious about what other peoples' lives LOOK like, struggles & triumphs they have, how they live. This is true for me across the board (and one reason I love to read blogs & books), but it is particularly true of those lives affected by disability. What are the things I need to know or watch for? How do other people deal with sibling issues or behavior problems or insomnia? What does this term mean? Where do you find that resource? And, yes, even How do you get permanent marker off the wall?
And when I say I'm curious about how those other lives look, I mean that on a very literal level, too. I know Junior's head is small. I mean, it really is off-the-charts small. But what does that look like? What might he look like as a full-grown adult? (I wondered the same thing before he was born!) Statistically speaking, most of us don't run into others with similar diagnoses very often. And we don't want to be rude and stare or ask questions when we do. But it's new. It's different. I'm curious! At the risk of sounding superficial, I found (and continue to find) pictures to be an important part of my journey. Obviously, a photo, just like a label, provides little information about the person within....but I gather each of those photos and labels up like acorns, and add them to my stores. The individual relationships, stories, and experiences fill the larder much more substantively, but I continue to gather every stray bit I see.
Finally, one thing I was very concerned with in starting a blog was privacy. I want to feel at least somewhat anonymous, mainly to protect my kids. I don't want their teachers or friends' parents or the checkout guy making inferences about us based on my posts, and of course I don't want my kids to feel embarrassed or exploited or ashamed. I am certainly not looking for criticism, or debates about issues, or "Trolls", or just any more worries, period! I've even debated whether or not to post their real pictures; I don't want people to target my kids.
But here's the thing. I want to share specific bits and pieces about our experiences with Junior. I want to give back a bit of what others have given to me; I want to give a glimpse of our life & sprinkle around some acorns to those who are foraging. I want to post pictures of him. I want him to become more real -- more approachable (less scary?) -- to others, literally putting a face to an amazing little person. I even want to use his actual name. As he is learning to identify letters and sign and write, HIS letters are the most important. His name has been the key to many of his exciting "firsts" in school. I want to acknowledge and remember all these things.
So, here we are, teetering on the top of this bloggy precipice. I'm going to walk along it a bit, and then I plan to go on over.
I would like to tell you a little about my son. I would like to give you a little peek into our life.
It might not be anything like your life....but then again, it might be.
Please be gentle with us.
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