randomly chaotic and frequently mundane

I understand that there are many well meaning people out t here, and I do appreciate that very much. However…

I’m a mom with a special needs child. My son has Autism. When I go places with my son, particularly new places, I go knowing that we might not be there for very long. He reacts differently to different places. Even places he’s been to before — depending on the stimuli present.

Every now and then, an occasion arises in which I’m with my son in an environment that he doesn’t find particularly favorable. Usually, I try to calm him down and see if I can change his mind or figure out what’s causing his negative reaction. Sometimes it works and sometimes it doesn’t. And sometimes, well meaning people approach the short lady struggling with a child who is obviously in distress and attempts to help out.

I understand that these people mean well and they only want to help. I know that when my customers are having trouble getting their children to stop crying or yelling, it sometimes helps to have a “stranger” say something along the lines of “hey, what’s all that noise about, silly?” It distracts them. Sometimes it quiets them. Sometimes it doesn’t. When you’re talking about a child with Autism… I’m sorry to say that it’s usually not a good idea to try and “step in” and lend a hand. Not if the child doesn’t know you.

PLEASE people. If you see a mom struggling (or dad)… and you want to help… speak to the parents before you lean in close to the child and start talking to them. That’s a good way to get slapped, punched or kicked. I refuse to apologize or discipline my child in that situation. You stepped into his personal space when he was obviously in an environment that was uncomfortable to him. What did you expect to happen? If you stick your hand in a shark tank and get bit, do you blame the shark?

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.

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