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

there’s a dog in the house again.  She’s a puggle named Petunia and absolutely adorable.  She’s also sweet as hell.

Gage is doing really good in school.  Next year he’ll be in the more advanced Autism class, which is excellent news.  I’m so very excited and proud and all of that.  We’ve signed up for the Autism walk again this year.  We want to make it an annual thing.  Starting the fund raising so we’re not scrambling at the last minute to try to get donations.

Work is work.  One of our more unpleasant customers was in today — skunk lady.  She attempted to make amends for some of the nastiness she’s unleashed.  Alas, she was attempting to make amends to the wrong person.  Which was both disturbing and amusing at the same time.  Maybe she’s sincere.  I’m not sure I buy it.

Searching for a new car.  New used car, that is.  Found a couple of options that look like they’ll be reliable, budget friendly and kind of “fit” as far as me getting behind the wheel without needing 25 pillows to be able to see over the dashboard.  Shortness has it’s challenges, you know.

Read New Moon and Eclipse this weekend.  Good books.  Can’t wait to see the movies.  Now I just need to get a copy of Breaking Dawn and complete the series.  I dunno about that whole “Team Edward/Team Jacob” thing.  Frankly, I think Bella should stick with Edward and send me a Jacob.  I’d definitely like a Jacob in my life.  Or maybe an Edward.  Both at the same time could be interesting, too.  LOL

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.

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

So, Gage has been on the patch for about a month now.  Doing really well.  For the past 2 weeks he’s kept the patch on all day when he goes to school.  When he’s home, that’s another story.  He keeps taking it off when he’s home all day (weekends and holidays).  Not entirely sure why, except that when he gets home from school I take the patch off of him.  Maybe he thinks that it’s only a school thing.  Funny thing is, the day that this run of keeping it on started, I told him that if he kept the patch on all day I’d take him to McDonalds for some french fries.  He kept it on and we got in the car and went up to get his fries.  Since then, when he gets home from school he’s hellbent on getting in the car.  I’m guessing that he wants to go get his french fries for wearing the patch all day.  It’s so cute though, cause he takes my hand and starts going toward the front door saying “car please” and “I want car.”

His behavior has been so amazing.  He’s not aggressive like he was.  Some days he gets a little bit aggressive, but most days he’s not at all.  No pushing or hitting at school or at home.  Even when Kalina (his 3 yr old cousin) gets a little aggressive toward him, he just walks away or looks at her like “what’s your problem?”  The past two nights, the two of them have sat at the kitchen counter playing games on my computer.  They alternate… one plays and the other watches.  Usually it’s Gage playing, he’s better with the computer and clicking the mouse buttons and all that.  But when he’s playing, Kalina watches and sometimes “directs” by pointing to the games/activities she wants him to do.  It’s terribly cute.

Gage’s focus has improved noticeably, once he’s used to the medicine in his body, I’m hoping he’ll be less aggressive.  I’m also working on getting him to keep his patch on longer.  He keeps taking it off before it’s time.  It’s supposed to be on until just after he gets off the bus — I time it that way.  He’s taking it off an hour or two early.  It’s not a huge deal, it’s one of those things that can be taken off earlier if necessary.

i’ve seen a couple of people post on autism related boards i’m on about people saying to them (snidely) upon learning that their child is autistic things like “since jenny mccarthy announced that her kid is autistic everyone has an autistic kid now.” like it’s a new fashion trend.

oh yes, that’s exactly right.  instead of a tiny dog in a purse, i’d rather have a child on a leash (because he doesn’t always want to hold your hand, and ikes to run in front of cars).

i requested the 5-yr-old who still wears pullups, not because he occasionally has accidents, but because he has no interest in the potty.

it’s always been my dream to be kicked in the face when i put my childs shoes on him, and to have to spend 10 minutes chasing him around the house just to get pants on him.

spending an hour trying to figure out why he’s crying, because he can’t talk and tell me what’s wrong is my idea of a great time.

and speaking of good times, i love not being able to have an evening out very often (it’s been almost a year)  because he doesn’t handle mommy leaving very well.

i love having to pick up the dozen things that he threw across the room in a fit of frustration, only to have him throw them again as soon as they’re picked up.  did i mention that if i don’t pick them up, he tries to force me to?

it’s absolutely fashionable to have your hair pulled, your face scratched and the rest of you kicked, slapped and punched because something is wrong… and you have no idea what it is, so you can’t fix it.

having an autistic child isn’t easy.  and it’s definitely not what i’d call the “in thing.”  i don’t know that any parent would ask for an autistic child.  but we love our children just as much as you love your “normal” children.  we want what’s best for our children, just like you want what’s best for your children.  and while some of the tricks we’ve learned to keep our children behaved and help them learn might seem odd to you, it’s what works.  and we have to go with what works.

gage, that is.

i’ve been wondering about it for awhile.  drug therapy with autistic kids has been shown to help with focus which enables them to learn better.  we had a meeting recently with someone working on the special ed program for the elementary school… she’s affiiated w/ jfk and works with autistic kids, so she had some good insight.

one of hte kids she’s worked with who was put on the drug she recommended we look into apparently told her it “takes the edge off” and made the analogy that before it was like there was a volcano in his head that was about to explode, and the meds helped that go away, so he could focus on things like communication.

i’m not saying i want my son to spend the rest of his life on meds, but that IS a possible reality.

yeah, there are all these other non-drug therapies, but most of them need basic verbal communication in order to be effective. i’m pretty sure gage understands some verbal communication.  he just can’t express himself verbally.

and i’m starting to wonder if he has some reading skills already.   it was discussed at the meeting, actually… and i know sometimes he’ll pull out his dr seuss’s abc’s book and point to the words on the cover and say “dr. seuss’s a b c” but i wasn’t sure that he hadn’t just memorized it when someone else read it to him.

the other day he started alice in wonderland in his dvd player… he’s figured out how to arrow up and down on the menus and press enter to make a selection.  i watched him go to the bonus features page, then he arrowed down several, stopped and arrowed back up one to a sing along song.  then when it went back to the menu he did the same thing and selected a game.

so i’ve been doing some reading off and on today about this preservative in vaccinations called ‘thimerosal.’ i guess there’s some speculation and theorization that it causes autism, or that it causes mercury poisoning (which, i guess presents like autism in small children?).

why am i reading up on it? well, someone on an autism/asperger’s board i’m on apparently had her child (who had been diagnosed w/ autism) tested for mercury poisoning and apparently he has it.

it’s interesting.

i keep thinking about 1 of gage’s vaccinations in the first 2 years. i don’t remember what it was called, but it was supposed to be a combination of 3 shots (i don’t remember what 3). so one stick instead of 3. sounded good to us… the next visit they told us that there was something up with the vaccination they gave him and they would have to re-administer 2 of them, because they weren’t effective or something. a couple of years later while bitching about doctors with an acquaintance, i mentioned that particular incident. she said something about those “combined” shots being known to cause autism.

i don’t know about KNOWN… since everything i’ve found says that there’s no evidence to prove the theory of mercury poisoning (and i can’t find anything linking “combined” vaccines with autism), but i can’t help but wonder if perhaps we should have gage checked for mercury poisoning.

but then… what if he does have mercury poisoning? then what? chelation therapy?  what after that?  i mean… i’m not stupid or naive enough to believe that if he DOES have mercury poisoning that the therapy would give me a perfectly “normal” child in the end.  it just doesn’t make sense that it would work that way.  if we’re talking about damage done because of mercury being in his system, logic would dictate that removing the mercury wouldn’t magically reverse the effect.

i have much more reading/research to do on all of this… i just gotta figure out where to begin.

after waking up from a nap with a fever yesterday, and all the puking as a result of coughing too hard… gage gets to stay home from school yet again.  as much as i love him, and i love spending the time with him, that means this week has been a complete bust as far as productivity.  additionally it means he missed the field trip to the elementary school, and he’s missed his meeting with the girl from jfk who is working with the autism program he’ll be in when he starts kindergarden.  i guess he’ll get to meet her next week when we go in for our meeting.  and i’m sure some arrangement for a trip to the elementary school will probably be made.  if i remember the “proceedure” right, he’s supposed to take a couple of trips before the school year lets out.

more and more people are jumping on the autism cause, and i can’t say i’m complaining. i’m hoping that the more awareness there is, the more people will be understanding when my son decides to throw his plate in a restaurant out of frustration.

this blogger posted about the band five for fighting adding their 49 cents to the pot — actually it’s 49 cents donated to autism speaks everytime this video is viewed.  go, watch it.  and pass it on.

and while we’re discussing gage (in a roundabout, off-kilter kind of way), he’s doing good today.  not as warm as he was yesterday.  hasn’t thrown up.  we spent some time outside in the sun and fresh air, which i think did him some good.

i’ve been doing more reading on autism, treatment techniques, ways of introducing new foods into the diet.  i used to put some of whatever we were having on his plate along with whatever it was that he was having for dinner.  i stopped because he never touched the food… but i’m thinking i shouldn’t have stopped.  i’ll probaby start doing that again.  there was that one time that he ate some lamb that we put on his plate.  i’ll never forget that.  it was so surprising.

so i’ve been thinking about this food issue gage has… see there’s very little he eats. not uncommon in autistic children, actually.

the primary “culprit” i guess seems to be texture. there are of course other things that it could be but texture seems to be the big one, the main cause in most cases for picky eaters. i wonder if that’s the case with gage…maybe i should make a log of the foods he eats at home over the course of a week and compare the textures.

there’s also a taste thing. apparently many autistic children will only eat foods from 1 of the 4 groupings that tastebuds focus on. not sure that’s the case. he seems to love sweet and salty and sometimes sour… not sure about the bitter.

this is an interesting technique for introducing new foods:

Desensitization is a behavioral technique that can work well with introducing new foods. Its gradual introduction can help the child to become desensitized to the smell, look and texture of an unfamiliar food. First, try a food that has the best chance of suiting your child’s preferences. It may just sit on a plate near theirs for several nights. The next few dinners, it may be placed on their plate but with no expectation made of the child to eat it. Next, the family may try the new food and show their enjoyment. With gradual introduction with no negative effects may allow the child to eventually try the new food.

i was thinking about something like that earlier… he’s on a spaghetti (angel hair) kick lately.  he wants it everyday… with a little parmesan cheese.  this afternoon i was cooking the pasta for him and i thought “i should add some lima beans or something to this and see what he’d do.”  although i do think it’s important for him to see us enjoying whatever it is we’re introducing him to… and i’m not sure how i’d feel about spaghetti with limas and parmesan…