Wednesday, February 23, 2005

Since I've been gone...

It's not often one gets a chance to miss oneself. I've been pretty busy. California is being washed away and we had the ignoble opportunity to have a Tornado warning. Thankfully, the month of storms is about over and we're preparing to have another month start in a few days.

Dad is visiting this week, must remember to take pictures of him and Gio. They're having a blast together--Dad comes with a multi-purpose stick that he generally uses for a Cane, but learns to live without because Gio owns it during all visits. It'll be another week or so before I can really get back to this Blog.

Generally, I've overstressed myself again and there has been a mass inflood of palpitations and well, pain. Quite a lot of it. They're daily now and pain clouds my chest most of the day. I've lost weight thanks to light exercise and a better diet. But that could be part of the problem too. We just got insurance yesterday, so I'm checking it out soon. Dad is worried I've been having small heart attacks--which really isn't too likely. I think my co-worker is worried too, though. Don't worry, I'll let you know.

Gio is doing great. He has homework now and it's so cute to see him learning his Last name. He's taken to coloring now and draws everything he's interested in. Unfortunately, he's reduced most of his conversation skills to replays of Dora The Explorer... Ah well, can't win them all!

Back soon!

Sunday, February 06, 2005

Coming Back Up To Date: Feb 6, 2005

Yup, I quickly fell off the wagon.

So, here we are, Sunday night and watching Stuart Little. He's gone through a few weeks of not eating anything but Pizza, but he's recovering. We've regained muffins, pb&j and the occasional burger. He's currently on the other side of the couch wearing a motorcycle helmet--a sea of toys between us--while his Daddy sleeps on the floor. I'm supposed to be working and I'll get to that. I'm a little worn out from the day.

I knew I was going to eat cake. So, I tacked a few extra miles on my morning stationery cycling.

Ten miles a day is, easily said, not what God intended for me. Neither was six loads of laundry, but I did that too.

At least the cake was good.

Next is doing my work, then I was considering the value of sleeping. I'm also fairly haunted by my new book idea and of course, incredibly naseous at the prospect that my last project landed sometime on Friday, signed for by someone named Tony. Whereever you are, buddy, I hope you're having something good to eat!

My husband and I are on a quest to rediscovering our bone structure...well, okay, fitting into our pants. We're on the cushy side of squishy. He's a bit more squishy than me, but that's just our dynamic. Believe me, if he were less squishy, he'd be way hotter than me. Not sure how I'd feel about that, lol.

Gio is making giant strides again, though, having drawn his first landscape picture. He's drawn spaceships and really made my day a few weeks ago by drawing a bowling ball (with a happy face, no less!) But this is really the first original representation he's ever made. I'm calling it a good week. :)

Nov 17, 2004

It’s an actual quiet moment in the house. Gio is playing video games--Atari classics, no less--in his room and hubby is in our room reading on politics and the war. This is by no means common. My husband hates reading. He was supposed to be in there doing some design work, but I’m not chiding him too much. On the one hand, he’s procrastinating and we both know it. On the other, he’s learning about something important. Who am I to judge him?

I’m starting to look forward to this journal. I try to think about things that I should put into it. Gio’s more effective use of sentences--not to mention his sudden lack of interest in them. Should I talk about the frightening state of my finances? I wonder how many people out there with special needs children can actually afford them. For every meal my son eats, I make probably three. Or buy them. He’s food specific. Or highly intelligent in that he knows my limitations in the kitchen and won’t settle for anything dangerous. Of course, occasionally, I think, he’s not specific, he’s spoiled. Then I try to make him eat what we have.

I’d say 9 out of 10 times, I give in before he does.

The truth is my son is 100% capable of starving to death before he eats what he doesn’t like. I know people think I exaggerate, but until they have seen their kid go three days on water and the occasional few bites of rice, they don’t have a say. There are days when I beg him to eat. I’d make everything in the house if he’d only eat. The doctor once told me that if the kid doesn’t want to eat, I shouldn’t make him. He’ll come when he’s hungry.

I found out last year that my son also has what’s called apraxia by speech, which affects the mouth muscles. As well as dispraxia of the tongue. Which is rather like having a door that opens into another door and the one won’t allow the other to be open at the same time. He lacked control of his lips, as well as control of his tongue, in different ways. To complicate matters, it seems that the apraxia was caused by the fact that he has an atypical facial muscle arrangement. He didn’t know how to control the facial muscles because while most children learn by mimicking, when he mimicked, different things happened and he didn’t know the difference. Worse, the muscles in his jaw and cheeks were very weak, so chewing was primarily a problem.

His tests proved that Gio had chewing strength of maybe two minutes, which was why he’d stop eating after a few bites and run away from the table. I tried often to make him eat more, which would make him lock down more. The oral therapist explained most people chew for about thirty mintues. Since he maxxed out at two minutes, it made it difficult for him to eat. Leaving me to realize that all the times I’d gotten frustrated and took his food away, I’d left him hungry. My child was running around starving because I’d been so impatient. So horrible of a mother, I didn’t even realize. I think it took me days to stop thinking that.

Well, to stop thinking it all the time.

I have issues with guilt, as you’ve no doubt noticed. My son is both the most incredible part of my life and the most difficult. He tries so hard to communicate, and I feel worse for having moments of jealousy because other parents have two and three year olds who talk all day long. Who jabber and make their parents crazy. Who can tell their mothers if something hurts, if he’s hungry or tired or happy. What I wouldn’t give to hear my son say he’s happy.

But he hasn’t.

It took him until he was four years old to call me Mommy. He was five when he first said “I love you.” He was repeating after me, which occasionally takes the glow off if I’m being painfully honest, but then he wraps his skinny little arms around my neck and breathes in my ear and I can feel his smile on my cheek and I know he loves me anyway.

They used to tell me my son would always be in a world of his own. That I’d often feel left out, that there would be times when he doesn’t even know I’m there. But I don’t think that’s true. I think that all the heartache is worth it because honestly, I am his world. And he’s mine. So, I live with the mad repetition of cartoons and his favorite catch phrases, with the demands of money I don’t have and things I can’t fix because he lets me in his world everyday. I shudder to think what it would be like if he didn’t.

He came home this week with letter sheets, letters he had to make without benefit of dotted lines. He likes to write in the air or on the carpet. He likes to write, if I don’t push him. I wonder if writing will someday be the bridge between him and eveyrone else. I hope so. I want him to be able to reach out to the world around him. I want him to reach out to me.

Nov. 7, 2004

I started thinking about what I should do for this project and I guess that the best thing to do is take it day by day. It’s a journal, so I don’t have to have the deepest of thoughts as long as I take note of how every day has passed.

Gio had a good day today, despite this weekend having been pretty hard. He’s six and I had it foolishly in my head that the bad days that he’s been having would be mostly outgrown by now. It used to be the bad days were that everything made him cry. The sound of his own voice seemed to grate his nerves, which would make him cry, or yell. He’d get really huggy and needy and clingy. Made it so hard to function. You crave restroom time, if only to be alone for a second...which makes you feel guilty. When they’re babies, it can be a bit easier to get away and get a breath. When they’re older and have a stronger sense of your patterns, escape is impossible.

But God, don’t you want it?

Then, of course, you start thinking, “If I was a real mom, a GOOD mom, I wouldn’t need to hide in the bathroom so I can breathe without the sound of anything ringing in my ears, or pulling on my shirt--or trying to get under it--or anyone tangling in my feet.”

But, you allow yourself, most moms don’t have a child with special needs. Then you start wondering if maybe you spoil your child. Or are you just spoiling yourself?

By then, of course, the child has found you and time is up before you find any answers.

I figure if my son would leave me in there for a good two years, I might just get one, but he had this addiction to occasional meals and my husband claims he’d die without them.

Thus far in his life, Gio can speak and he’s currently developing more sentences. Things like “I monkey,” when he’s jumping on the bed. “I want____” usually indicating food. “Where you going?” was one of his first unique sentences. He gets lazy though, with his consonants. We frequently remind him it’s “wah-TTT--ur” instead of “wahwer”. We regularly worry about pushing him too hard and not pushing him enough. But sadly, that comes second to feeding him.

He started today with three PB&Js, only drinks water with occasional soda and then rounded off with a slice of pizza for lunch, with a buttery biscuit from Popeyes and another PB&J. He loves them hot--food is not edible unless it near burns his tongue--and thanks to Wallace & Gromit, he’s discovered sandwhiches on toast, tested and immediately adored just today.

He used to eat crackers, but that stopped around age two. Again, W&G have served us well, except he’d really like to eat nothing but crackers. I have to go and buy another pack of his preferred hamburger patties, we made do with fresh meatballs that he was willing to eat tonight. I’m praying to come up with a new way to get his vitamins into him--nothing productive thus far, sad to report. Why can’t they make chocolate vitamins that don’t taste like they can be mistaken for dog droppings?

He requires a bath daily in order to go to sleep and stay there, but thankfully, he required less crawling all over me and impeding my breathing, but a good amount of happy hugging went down. :)

What Is Autism?

There’s medical answers to this question, though they vary from source to source.

But the one you need to know as a parent is this: Autism is the wall that separates your child from you.

The wall is different for everyone. Sometimes it’s their inability to hear you. To respond to you. To communicate with you. Worse, it’s a wall that you watched go up, brick by brick, unable to stop the mortar from drying, unable to stop the bricks from rising higher and higher until your child is all but gone.

Your baby was probably born completely normal. Healthy and fine. Sure, there were a few twinges of difference, maybe they had some quirks about how they ate, made certain rejections of nipples or bottles. For myself, I breast fed and my son had one position--I lay on my side and he lay next to me. Nothing else would work and he outright refused formula. If he did take it, it never stayed in his stomach long enough. I decided my son was set in his ways. I had no idea.

Maybe something happened, something unusual, like the baby making sounds incredibly early. Or physical milestones didn’t happen when they should. Or the baby does things slightly out of order.

My son used to make sounds, at three months he made a sound that sounded remarkably like Mama. He got the nickname “Bubba” because until he was six months, that’s pretty much the sound he made all day long. Around nine months he got to enjoying the sound of “dadah”. Then he was silent. It was a silence he’d maintain until he was nearly four years old.

He held himself up minutes after he was born. By two weeks he could lift his head and pick himself up slightly to look around. I was, of course, unspeakably proud. He could stand with a fingertip hold at three months and we took plenty of pictures of this veritable miracle. But I never saw him roll over. He just didn’t seem capable. One day, he had done it and only would do it if no one was looking. I thought this was just a quirk. He waited more months to army man crawl. He had no interest in crawling at all. He tried walking for a few hours at 9 months. Then he decided it wasn’t for him and didn’t bother with it until he was 15 months old. That was the beginning. There was a long road ahead.


Originally uploaded by Deelicious1.
My favorite picture of me and my son, Gio. It's worth sharing. ;)

New Year, New Attempts


I've never done one of these before, but I have seen a number of them from my friends and I was also encouraged to keep a diary of my views on what my life with my special needs son is like.

My baby, Moo--as we call him--is a pretty big adventure. He's six (and a half) and while not medically diagnosed, is recognized as "Educationally Autistic". He's a functional autistic and he's come so far in the three years that we've known about it. Keeping a diary on him is like keeping one on myself. Plus, maybe family can check in with us from time to time this way and see his growth. It would be a nice thing.

Also, I'm a writer. It's how I stay sane. I channel almost all my creative energy into writing. If what I have to say might make it clearer or easier for someone else to cope with writing, marriage, autism or just give them a laugh, I'm all for it.

Did you ever know why misery loves company? So it doesn't have to laugh alone. :)

Smooches and wish me luck!