randomly chaotic and frequently mundane

In honor of that, I’d like to post about about my son.

He was diagnosed on Feb 15, 2007.  He was almost 5 years old at the time.  What lead us to have him evaluated?  I actually get that question a lot.  He hadn’t started to speak yet, for starters.  He also lacked social skills — though he hadn’t had much social interaction with his peers prior to starting pre-school that year.  He didn’t make eye contact and wasn’t affectionate and he had a hard time focusing on a single task (more so than your average 4 yr old, that is).

What was it like?  Well, it was difficult.  I’ll admit, I cried.  In that moment, I realized all the things that my son might never experience as a result.  He may never fall in love.  May never attend college.  Might never have a career that he loves… there are so many “might nevers.”  It hurt me to know that my son might not experience those things.  But the next morning, I woke up with a renewed resolve — the might nots are still there, but what can and will happen is that I will do everything in my power to make sure that my son has the opportunity for those things to happen.  In essence, I woke with a new attitude and determination.  Now my son is on the Ritalin patch, which helps him to focus on things in school and at home.  He interacts with other children more frequently than just school.  He’s encouraged and praised when he uses new words correctly.  His progress has been tremendous the past couple of years and he’s going into a class next year that relies less on “one on one” lessons and more on group lessons.

Yes, there are still tantrums from time to time.  And even rarer than that, there are still meltdowns.  They’re terrible and heart breaking and occasionally frightening.  But that’s part of who my son is, but don’t get me wrong… if and when it goes away, I won’t miss it.  It’s still a part of life and we deal with it.  ‘Nuff said.

Do you ever wonder about the things you’re missing out on by not having a normal child?  What’s normal?  My son is normal to me.  He’s the only child I’ve ever had, his diagnosis didn’t change anything.  He was the same kid the day before we got the piece of paper that said “Diagnosis: Autism” as he was the day after we got that piece of paper.  And just what am I missing out on?  I have a loving son who is affectionate, loves to laugh and play outside.  Loves a lot of the movies I grew up watching, likes playing with the dog… a child for whom blowing bubbles or a bowl of mac and cheese will cure any sour mood or boo-boo.  Sound a lot like some “normal” kids you know?  I’m not missing out on anything, I’m just experiencing it in a different way than you.

On May 22, my family and I (including my son) will be participating in the Autism walk in our community. Please feel free to click the link and contribute to our team. Your support would be greatly appreciated.

Click Here to Donate

So I was thinking the other day… so often, I get asked by people, perfect strangers what’s wrong with my son, or what’s wrong with me that I have him on a “leash” when we go out in public.  Well here’s the thing, YES, I do use one of those kid harnesses with a leash attached when I take my son out.  My son has Autism and he doesn’t usually like to hold my hand, and when he does, it’s never for a very long period of time.  It keeps him close to me, even if he gets distracted by something else.  It prevents him from running out into traffic.  It’s a safety measure.  If you don’t like it, screw you.  I’m not going to apologize for doing whatever it takes to keep my kid safe.

But I digress.  People ask me these questions.  I tell them my son has Autism.  99% of the time, the response is “I’m so sorry…” Excuse me?  Why are you sorry?  He’s my son, Autism doesn’t change that.  I wouldn’t trade anything in the world for the joy of having that little boy.  In fact, I think I’m blessed, because I appreciate the little things so much more because of it.

Spontaneous I love yous for example, you know, the ones that come without hearing it first.  The ones where a child will simply say it, completely out of the blue.  My son will, with prompting, often repeat the phrase “I love you” to someone who has said it to him.  But very rarely does he say it spontaneously.  Other kids do it all the time.  I think I got 4 or 5 spontaneous I love yous from my niece today alone.  Don’t get me wrong, it’s special when she tells me she loves me and it’s dear to me.  But it’s nothing compared to my son saying it.  He’s given very few people a spontaneous I love you, and I’ve noticed that when he does he has perfect enunciation, he looks the person in the eye and he is very focused.  It’s as if, for just a moment, the sensory jumble/overload that he endures every day clears and he’s saying “this is me, the real me who’s hiding inside here and I have to tell you this now because I don’t know how long it will last… I love you.”  That is a moment that brings people to tears.  I’m the most frequent recipient, I’ve heard it 4 times since he was born.

There are things that I may be missing.  People have asked me about missing out on things because my son isn’t “normal” but I don’t think I’m missing out on anything.  My son is different, so the things I experience may be different.  I’ve seen my son spend an hour fascinated with a lady bug crawling on his kiddie pool and then on his arm.  Looking close, breathing on it, touching it’s back… When he was done watching the lady bug, he picked it up and put it on a dandelion.  I’ve seen my son successfully turn our front yard into a dandelion garden in the span of one summer.  The salad was excellent.  My son finds fascination in things I never noticed before, or that I took for granted before.  But when I play alongside him, I find myself having fun that I wish I’d discovered as a child, too.

My son’s not broken.  There’s no reason to be sorry for me.  My son is different, and yes he can be quite challenging.  But he’s extremely special and perfect in every single way, as far as I’m concerned.

Halloween was nice.  I bought Gage a Superman costume, and he wanted absolutely nothing to do with it.  So I took him to Walmart and showed him the costumes.  He took a fireman costume off the wall and said “may I have red?”  So he was a fireman for Halloween.  He had a blast trick or treating.  And this was the first time ever that he picked out his own Halloween costume.  I was so excited.

Thanksgiving, was the same as usual.  He avoided all of the usual dinner items and ate mac and cheese.  But he did play with his cousins a little, which was nice.

Christmas was an interesting time this year.  We went to pick out the tree with mom, and Gage walked right up to one tree and said “Christmas tree.”  Well after searching through all the other trees it turned out that the tree Gage picked was indeed the one we were going home with.  Even better, it was the most perfect tree we’ve ever had.  The right size, the perfect shape, no holes except for the kind that you hang large ornaments in anyway… it was PERFECT.  After we set it up, we had to give it a couple of days to fall,  before we decorated it.  Gage wasn’t having that, apparently.  He got out a basket of jingle bells mom uses for decoration and hung them all over the tree (where he could reach, anyway).  We had to distract him so that we could get the bells off to put the lights and stuff on.  Then he helped put the ornaments on the tree.  It was the first time he’s ever helped decorate the tree.  It was really special.  He had a blast Christmas eve and day, got lots of presents.  He got something really special from his grandparents… a train and a donkey kong game that belonged to his daddy when he was a kid.  It was awesome.  The train especially.  When he unwrapped that, he grabbed the box and ran like he thought we were going to take it away.  It was so cute.

I got a book called the Kid Friendly ADHD & Autism cookbook.  It has a lot of GFCF recipes in it as well as tips on slipping more veggeis and proteins into your kids food.  Some I’ll never try (like putting pureed meat into muffins — sorry, that’s just wrong), but some ideas are pretty interesting.  Actually, I’ve tried one already.  I put pureed cauliflower in his mac and cheese last night and tonight.  I’ve been reducing the amount of gluten in his diet a bit lately, and it’s made a bit of a difference in his behavior.  So I’m going to try going a little further.  Tonights mac and cheese was actually gluten free.  He’s going to start getting only gluten free mac and cheese and spaghetti.  Bread I think I’ll keep as is for now.  But I might start making gluten free muffins for his breakfast, something I can slip some grated veggies into.  He’s also started eating eggs.  A 1 egg omelet with a slice of bacon folded in.  Of course, currently he’ll only eat it if it’s been cooked using bacon drippings.  I’m working on gradually phasing that out. 

He’s doing great in school and being more social.  He’s always trying to play with his youngest cousin.  He likes to run around holding her hand and laughing.  He likes to spin around with her and they have a good time when they’re getting along.  It’s so cute.

So, anyone who reads this knows that I have a child with Autism.  It’s not the easiest thing to work with in the world, but it could be worse.  I see parents with “normal” children who have a harder time getting their children to listen to them than I have with Gage.  I do tend to visit websites, messageboards, etc where parents of Autistic children can chat, exchange stories, etc.  Someone posted something a week or so ago that I found kind of disturbing.  She posted the date that her son was diagnosed, and said that was the day that Autism took her child away from her. 

What?  Did the doctor confiscate the child because of Autism?  I think back to the day that Gage was diagnosed, and it was an emotional day.  That day I accepted the fact that my son might never fall in love or get married.  That he may have to live with me for the rest of my life, or live in a group home.  But I never felt like he was taken away from me.  I think of it more as having been introduced to him for the first time.  There were a lot of “that’s why” moments that day as I thought about various behaviors or milestones he missed or hit later than the average child.

Of course, the progress he’s been making the past 2 school years and having a co-worker who is engaged to someone with Autism does give me plenty to look forward to and hope for as far as Gage’s future.

This past saturday, we did the Autism Speaks walk in the area.  It was fun, and we enjoyed it.  Our team (which consisted of myself, Gage, mom and Sisser) raised $320.  Gage got a t-shirt, so did mom and Sisser.  It was more important to me that Gage get one than I get one.  He wore his t-shirt to school today.  Gage actually walked about half of it, too.  Which made me very proud.  He handled the crowd pretty well as well.  I’d like to repeat that experience next year and in years to come.  Perhaps with a larger group next time.

They had information booths set up.  One that interested me the most was the Toys R Us booth.  They had a list of toys that are considered outstanding for kids with Autism.  On the top 10 list was 1 toy he already has (Kid K’Nex), 1 that I’ve been considering getting him (Candyland Castle) and a digital camera, which I know he loves… I just didn’t know was actually helpful to him in anyway.  Apparently trains (which he also loves) are also very good for certain skill development.  Good stuff to know.

They had guys from the 501st Legion at the walk.  It was exceptionally cool.  I got a picture with Boba Fett.  I know, I’m such a dork.  Gage was inspecting a storm trooper, I think he was trying to figure out how to dismantle the armor.  It cracked me up.

was hands down the best day of my life.  on that day, i gave birth to a beautiful and perfect baby boy.  he weighed 6 lbs and was 18 inches long.  now he weighs closer to 50 lbs and stands a little over 3 1/2 feet tall.  he’s still beautiful and he’s still perfect… and i love him more today than i did yesterday.  i couldn’t imagine my life without him, and i have a hard time remembering my life before him.

today was Gage’s 7th birthday.  my beautiful baby boy is getting so big.  i remember when he would sleep curled up in a space about 8 inches square on my chest/shoulder area.  now he’s getting close to my height.  on the very rare occasion that he curls up on me, he covers most of my torso with his head on my shoulder.  he’s such a wonderful little boy.  the light of my life and everyone who meets him just adores and falls in love with him. 

today he got a new Wii game (Endless Ocean) and a little star wars ship.  at his birthday party, he’ll get another star wars ship along with some figures, a ball, a sprinkler to play in during the summer and a few other little toys that i might pick up.  who knows what he’ll get from others, except that grammy and pop-pop are giving him a bike (w/ helmet and pads, of course).

Happy birthday, Baby Angel.

Gage, that is.  He’s doing really great in school, and at home.  I’ve noticed that he’s more affectionate.  He often turns to Kalina and holds out his arms and says “Kawina… gimme hug!”  It’s absolutely adorable.  I’ve just got to get him off of this “I’m home from school now, lets go to the grocery store or McDonalds or somewhere else” kick.  It’s one thing to have him do that occasionally.  But he does it everyday.  If we don’t get in the car and go somewhere, there’s a little meltdown.  Sometimes a big meltdown.  But I’m trying to limit those occasions that we do actually get in the car and go to days that we actually NEED to.  Can’t have him thinking that just because he put on his shoes and jacket and asked for the car that he’s going to go get french fries or something.

So Gage is addicted to Wii bowling.  Can’t say I’m upset by this.  It’s fun, he has a good time doing it and he’s getting exercise while he does it.  It does get a little tiresome having to play so much.  Everyday for at least an hour.  He won’t let me set it up so he’s playing and I’m just a spectator.  Mommy has to play.  I have to admit that I’m impressed with how well he does at it though.  He bowled a 189 recently.  That’s mighty impressive.  His usual score is around 120, which is still pretty good.  He’d do better if he really focused on what he was doing instead of just “throwing” the ball down the lane.  When he focuses he does really well.  I’ve seen him pick up some pretty impressive spares in the game.  Now he’s trying to figure out baseball.  He’s got the pitching down pretty good.  It’s the batting that’s messing with him.  Truth be told, it messes with me, too.  The timing is a little weird.  Or maybe it’s just me.  But it seems a little off from what it should be.  I’ve tried showing him, but he doesn’t want help.  He wants to do it on his own.  After he masters baseball, I think we’ll tackle tennis.  Followed by golf (which I must admit that I’ve played and it IS mildly amusing).  I’m not sure I want to get him into the boxing game though.  I was contemplating what other Wii games he might enjoy playing.  I should rent some or something and see how he likes them.

so Gage’s teacher writes in a notebook every day or so about how Gage is doing in school.  What activities and stuff he’s enthusiastic about, or not enthusiastic about, how his behavior was, etc.  Today’s note included mention of Gage quoting a movie.  The quote is “Where’s the baby?  You lost it?”  She followed that with a comment that she assumes its from a movie or tv show, unless I’ve misplaced a baby.  That cracked me up.  it IS from a movie.  Ice Age.  Manny says “Where’s the baby?” and Diego answers with “You lost it?”

His behavior has been really good since he’s been on the patch.  Aggression at school has been to a minimum.  Even at home, once the patch comes off, he’s been much less aggressive.  There are triggers, of course.  And Kalina not only knows what they are… she USES them.  But mostly, not aggressive.  That’s a great thing.  Also, he’s able to sit still and focus on an activity or assignment in school until it’s completed.  Even at home.  He gets these hidden pictures books from Highlights that have a few pages where you put stickers on the hidden images you’ve found.  He LOVES those pages.  When he gets his magazines, he sits and does those pages until they’re done.  They come in a 2 pack every other month.  I’m thinking of saving one of the magazines he got today, and taking it with us when I take him out to a restaurant or something.  To see if it’s enough distraction to get him to wait patiently and quietly for his food.  Of course that means I’ll probably be taking him to friendlys or something this weekend.  He’ll like that.

For some reason, he’s not too fond of pants.  When he gets home from school… the pants come off right after the shoes and socks come off.  It’s like “I’m home now!  Pants are not required!”  At least he doesn’t take his pants off in public.  Although he does occasionally take his shoes off in public. 

Gage lost his first tooth tonight.  I’m probably more excited than I should be.  What’s the going rate for the tooth fairy these days?  Anyone got change for a 20?  It was so cute though, cause he was trying to put it back in.  When I asked for it, he handed it right over and opened wide so I could put it back in for him.  Sorry little… it just doesn’t work that way.  The new tooth is already cutting through though, so he’ll probably forget about the first one in a day or so.  Of course, who knows when the second one is coming out…

Gage is doing really good.  Making all kinds of progress and the patch is helping a lot.  He’s not as aggressive as he was, not nearly.  He now knows his address and he’s working on his phone number and his birthday.  He’s writing better and hold onto your socks… READING.

We sit and read books all the time.  He sounds out the words, even the hard ones and when I correct his pronounciation, he repeats the word as I said it.  The first time he did it, I cried my eyes out.  I was so happy and proud.  Even now, I want to cry when he brings me a book and says “greed” (that’s how he says read).

Gage is doing so good.  He’s counting.  That’s one of the things they work on at school  They get a sheet with a bunch of items in rows and have to count how many there are and write down the number.  He has some trouble writing a few numbers still, but it’s still pretty good.   He’s also doing the Edmark Reading program, and he’s been reading and writing some words, which is all kinds of awesome!  His behavior is so good.  He doesn’t freak out or get aggressive like he used to.  When I take him out on the weekends or the occasional week night, he’s well behaved for the most part.  A few minor issues here and there… like the average 6-year-old, but nothing so bad that the going out is stressful.  Now if I could only get him to not pick up stuff he wants and insist that we must have it.

Still some good knock-down, drag-out fights with Kalina… but she DOES instigate most of that, and he’s just retaliating or trying to establish his personal space or something.  No big deal, just a matter of keeping them seperate when they’re in that frame of mind.  Much of the time they get along great… there are days that they want nothing more than to hang out with together in Grammy’s room and watch Toy Story or something.  Then there are days that they want nothing to do with each other.  If only they could give us a schedule of when those days will be…  LOL

gage is doing great in school so far.  the first 2 weeks have gone really well.  he’s right back into the swing of it all and doing good.  he’s talking more, i’m trying to get him to talk on the phone so he can talk to daddy every now and then.  so far no dice.  he runs from it when it’s on speaker and while he’ll listen for a minute to the regular handset, he puts it down and walk away without a word usually.  his two friends from last year are in his class again this year, which is nice.  they apparently hang out together during sensory room time and other activities.  their mom’s and i are going to try to do some play dates this year with the three of them, which should be fun.

we’re contemplating ritalin.  respiridal and ritalin were recommended to help with focus and aggression.  the issue was that he won’t take medicine.  whenever he’s sick, i have to slip tylenol, cough medicine, etc into his drink and hope he drinks it all.  he won’t swallow pills, won’t take liquids… but apparently, ritalin is available in a patch.  i’m thinking it’s worth a try.  the focus especially will help him learn more, might even help him to communicate even better.

I haven’t had the chance to do a picture of the week in awhile… so I thought I’d post one and try my damndest to get back into the swing of things.  I took this today, it was Gage’s first time ever to the ocean.  My god he loved it, didn’t want to turn from the view.  I knew he would, to be honest.  He loves water and he loves to play in the sand.  If I let him, he would have made a beeline for the water and splashed his way to hypothermia.  Well, maybe not hypothermia… I don’t think the water was quite THAT cold, but cold nonetheless.  I could have stayed down there on the sand all day myself, to be perfectly honest.  The day included going to a little aquarium and Gage winning a stuffed fish at a fishing boardwalk game.  Maybe I’ll be able to take him to the shore when it’s a little warmer, when he can actually go in the water for a bit.

Gage put himself in the bath.  He plugged the tub and started the water.  Then he got undressed and got in all by himself.  Now there’s a kid who loves to have his nightly bath!  When he gets home from school, he doesn’t touch the bus tire anymore.  He just runs up on the neighbors porch and sits on one of the chairs.  It’s cute.  They’re ok with it, which is good.  I think they think it’s funny, actually.

I keep a little sculpey out for him to play with.  He makes things out of it.  I know he makes fish and castles.  I don’t knwo what the rest of the stuff he makes is.  I’m trying to figure it out.  I’m hoping that eventually he’ll leave the little figures as they are when he walks away and I can bake them.  So far, when he leaves the sculpey he smashes it up into a ball or something again.  It’s a shame.  I want to bake some of these and make them permanant!  I’ll get them eventually.  Maybe I should try some of that crayola modeling clay… it doesn’t require baking.