Tuesday, November 5, 2013

Big Steps

As many of you know I have returned to work for now. We have to do what we have to in order to make ends meet right?

Well with this we've had major changes.....

Last Friday I had off so we did our test pilot and put the kiddo on the bus for the very first time ever. If you follow my page at all you'll know it was a blazing success!! For those of you who don't, despite all the anxiety on everyone's part, we prepped and planned very well. He came off the bus grinning ear to eat and saying that it was fun!

The bus he rides on is a special designation bus. It only has special needs kiddos from his school. That's it. No mixed population. So we thankfully get to avoid all the bs that goes with bullies. Since he lives on the other side of town and the school he attends isn't his home school (the same is true for the others on the bus) we also lose any weird stigma. These kids simply live elsewhere.

So I get off work at 4 now. I think this bus thing could work since his official drop off time is 4:14 pm. Even if he beats me home it won't be by more than 5 minutes. So begins our next round of prep. Getting him in the door without panicking if I'm not here.

Before you get all sweaty and upset with me, know that he can definitely handle it. He manages just fine when I'm sleeping till noon on lazy Saturdays. He is actually really excited over the prospect of being here by himself and proving some responsibility. He can manage the door locks and playing a game or watching TV till I get home. Even if he has the munchies he can also get himself a snack. He wants to prove he can stay home alone while I go to the store. The jury might stay out on that one for a long while but we'll see.

It's all good.

So I've been working with him on unlocking the door and what he needs to do when he gets home. His BSC has made some cards at my request to walk him through what to do if he beats me home. He's getting a key. His teachers, BSC, and Grandma are all on board and ready to test this out this week (Grandma will be meeting him here at home this first week, helping to walk him through what to do, while I time myself home).

Sunday night, plan in place, start date in T+2 days and it hit me.

I have no house phone.

What if he needs to call? What if he can't get in? What if he just needs a mommy eta time check?

Fudge.

Insert two frantic days of 'now what?!?!' here.

I've never had a house phone so I don't even know if these lines are any good. But I investigate anyway. $10 phone services exist right?

Wrong...

Upon closer inspection they aren't really $10 and some even interfere with home security systems. Well that doesn't help. I'd need a real, traditional phone line put in.

Mobile phone? I do have access to a new phone from a friend. Perfect.

And.... Holy crap are the plans expensive. Even the prepaid!! I can't add him to my line very easily because I have the ancient nonexistent plan from Verizon that gives me unlimited data that I will never give up. (Over my dead body!) I am still unclear on if it could be added to the iPad, also Verizon... Still investigating.

All this stuff takes too much time!! I need something ASAP!!

So I start looking at apps. Google voice (which I currently use for voice mail), Talkaphone, Skype...

None will work because they won't let me call myself. Ugh!!!! I went to bed very frustrated last night. So I sent out a call for help.

I got a lot of suggestions. I got some offers of free phones. Nothing that would really quite work. And some I just couldn't implement fast enough. (Phone offers are on standby....)

Then a dear friend (you may know him from Blogging Lily) clued my blonde self in to a brilliant idea.

Use a separate Skype account.

GENIUS!!!

Who doesn't have several email addresses sitting around collecting dust? I sure do!

So I set one up for him (I already had one). I gave it a password the kiddo would remember. I logged it in on my laptop. Shazam!!!! It worked! We did a test call to the account I already have and the kiddo nearly came out of his skin with excitement!

Hmm... Will it go on the iPad? .... I look... Holy crap on toast it will!! So I set it up there. Once again the kiddo's skin peeled off in his excitement.

Wait! The phone! My old phone travels to school with him and he gets it for rewards to make videos or whatever. It basically runs like the iPad so it's usable. Internet over Wi-Fi.... I log it on... It works!!! I think he might have passed out.... ;)

I think we are covered for now.

He's growing up so fast on me.... Please pray for my sanity this week. :D

Tuesday, October 22, 2013

Through the Looking Glass....

I sat there in the office, looking at my doctor, who was just looking at me.

Moments ago he had told me that yes, I do appear to have it, but since I already know and am very self aware, why am I asking him to confirm it?

I didn't have an answer. Why was I seeking the answer from him? I knew the answer, sure. But hearing it is validation right? Or so I thought. It was the other words that hit me: you are self aware, you already know, you seem to have adjusted and coped just fine with it. Oh, and I should seek counseling as it is something that helps everyone.

I wanted to laugh hysterically. Coped well? Adjusted? Managed just fine? Did this guy even know me? I felt a little insulted by his assumptions. Oh, if he only knew....

Yes. I knew it already. I didn't expect to hear it, that wasn't the main reason I was there, but deep down I knew. I didn't really need him to tell me that I was on the spectrum, that I was likely an Aspie.

I knew.

To me there is a genetic component. My son got it from me. Well that explains that then.

Adjusted well?

I guess if you can call a Bachelor's degree, teaching certification and being 2 classes away from a Master's degree "adjusted."

More like "damn lucky to have somehow navigated so blindly through the universe that never understood me or feeling like I ever fit in."

But sure. I adjusted well. (/snark)

I've actually sat on this for about 6 months now. Six months this has been swirling in my brain. I had no idea how to write this. How to put it into words. Until now, I haven't told anyone.

Not my mom. Not my sisters. Not my best friend. Not even Strike. No one.

I was talking to my dear friend over at Mutha Lovin Autism not too long ago about this. She had written an amazing post that really struck a chord with me. You can read it here. She told me that only I can make the decision on where to go with this information. I honestly still don't know. But right now I feel that it needs to be out there. I've sat on it long enough.

Will it bring more understanding? Probably not. Will people look at me differently. Probably. But I have always held to the belief that I will be true to who I am and embrace it.

Over the last 6 months I have thought about many things. Growing up, school, my degrees, relationships... I've had so many struggles that I think would have been less had I known then what I know now. I was fighting against who I was not understanding myself, my emotions, my thoughts. I'm a pretty intense person. On every level... O.o

One relationship stands out when I think back. It was just a few years ago. He was a really great guy, said and did the right things, and things were great. Until they weren't. How much of that was him and how much was me is debatable and not relevant. (It was really about 50/50 anyway.) What is relevant is my own over-reactions to rather simple and insignificant things. I perseverated needlessly on so many things. It became harmful. My own reactions being so strong and sudden and him not possibly able to know where it was coming from, was a huge issue. I still struggle with this today. But not just in general, specific to this relationship. Had I been more self aware at the time to my own thoughts and emotions, I think things would have gone very differently. He will never see this post, as I'm sure he has no idea I write or even have this blog, but to him, I apologize. I was pretty intense, wasn't I? ")

Does it matter? In the long run no. We are both very happy with our current situations, I'm sure. I know I am. What does matter is the ability to have self awareness.

Where am I going with this? Over the last 3 years I've developed this self-awareness. This has helped me tremendously and has trickled down to the kiddo. How? Knowing my own struggle helps me understand and help him through his.

I heard not too long ago that I am a different person that I was a couple years ago. I have made a point of changing how I was in an attempt to make my relationships healthier and stronger. I like this new me. I feel stronger. I feel better. I finally feel like "me." I am conscious of where my limits are and managing myself. I didn't have a name for it, it was just something I knew I had to deal with and work on. It's something I work with the kiddo daily on. He needs to know his and how to work with them. What I haven't figured out yet is my temper and level of intensity... Someday I hope to get there. It's work in progress and I am improving.

Knowing what I do now, so much makes sense. I even sat down to compile a list of things (a running list because I keep thinking of new things) that make sense now when you look at how Asperger's is described (you can find this list in the link above, all apply which threw me through a loop, but I'm just highlighting some here):

Things like head banging in the car. I needed to move, so I'd move. There was something strangely comforting about constantly banging on the back of the seat. (My sisters didn't appreciate it much though...) I craved the motion. I still do. I can rock or swing for hours. I was a very stimmy child, often flapping my hands and being told very sarcastically that I wouldn't make it off the ground by an uncle of mine... :/

I crave pressure. I am one who will sleep with the comforter when it's 100 degrees in the room. I need to feel the weight. I also have to have my feet covered at all times.

I was staring at objects from an early age, just watching them move, trying to figure out how they moved. A few years ago I remember doing this with a Hoberman sphere that my son has. I lost hours to that thing one afternoon.

I had a thing I can only describe as a "scissors feeling when in car." I would cry over this one. Whenever I touched something I felt as though there was some sort of invisible string still tying me to that object that I had to "cut" to release. Then I'd have to cut what I just cut. Then cut again. And again... You get the idea. Eventually I would just cry in frustration.

I am one of the most inflexible people I know. I'm very rigid in how I think and respond. I have a really hard time adjusting to changes in plans, especially when they are last minute. I can easily lash out. Zero to 60 in 2.3 I always say... Once the change is in my head, I'm ok. I can adjust myself after the initial panic, talk myself down, and be ok. I just have to get there first...

I also have to do things in a very specific way. I thrive on routine. Things have to happen at certain times and in certain ways or it throws me off. This morning I accidentally shaved my right leg first... Seems like a small thing but it really messed with me for a while after that.

I have a love of cats. That is likely where my son gets it from. Growing up my world revolved around them. I was convinced for years that I would be a wildlife photographer and go to Africa to photograph them. They are and have been an intense, deep, interest for me. I am very attuned to my kitties.

I have major sensory issues. The biggest one being the feel of my clothing when I'm tired. They just get suddenly uncomfortable. When this happens I get irritable. I even have to take off my watch. I also hate being wet. It is nails on a chalkboard for me.

I have a major need for music at times. It works wonders to regulate my thoughts and emotions. It helps calm me and make sense of chaos around me. If the kiddo is particularly vocally stimmy I will have to pop in my headphones in order to be in the same room. (Which hurts to say.) Many of you already know of the headphones and music we bought for him for the same reason.

I often live in my own world. I like it there. I feel safe there. Going with that, I prefer to be alone. I'm content to sit by myself undisturbed for long periods of time.

My whole life I have struggled greatly with who I am and where I fit in. I've never really felt I belonged in a sense. I didn't feel like I really had an identity unless I had a label: band member, cheerleader, admin, and eventually mom and teacher. I live by those labels. Without them I am lost.

I often have to rely on my friends in social situations for cues on how to respond to something. I often respond wrong and don't know it or understand why (a big issue in relationships, like the one I already mentioned). The issue here is that I am often seen as cold and unfeeling which is really not accurate at all. I easily offend and alienate people as a result.

As strange as it may sound, I keep certain objects near me at all times. It changes as times goes on but it's pretty consistent. As a result, I carry a large purse... I have a hard time letting go, objects or people.

My closest friends have always been male. I say it's because there is less drama (which is true) but men are often so black and white. This makes them so easy to understand. They also don't really seem to care so much about those minor social things that women pick others apart for.

I've always been very motherly, taking care of people and making sure everything is ok. This usually isn't an issue on a larger scale and it works nicely to counteract those who think I'm cold and unfeeling.

I'm very blunt and have no filter. This is not good in many social situations but over the years I have developed my skill for tact and diplomacy which has helped ease the sting on this one.

Growing up I found it easier to be friends with people older than me and had many adult friends. To this day I have friends who are older than me (as I age this gap closes). I've been told I have an old soul. I can only guess this is where that comes from.

I found it interesting than an intense interest in reading was on the list. I'm an avid reader and am never happier than when I have a book in my hands. My son shares this love of books and we currently have far more books than we have shelves to put them on! He recently came home and told me that the book fair was coming to school and on what day so I wasn't allowed to forget! :)

Appearing shy was also on the list and this one made me smile. Growing up I was often assumed shy because I am also hearing impaired. I would avoid large crowds and when I couldn't, I would be the quiet one in the corner. I would (and still do) avoid going to parties and large gatherings for this very reason. However, around trusted friends I would be completely out of that shell and show my more outgoing side.

I remember a little quirk I had growing up. I would circles around the house for hours. Perfectly content to circle, lost in my own world and thoughts. About 3 years ago now, my son was spotted doing the same and I had received a frantic phone call from my mother who was convinced the kiddo was upset and I needed to come pick him up. He was perfectly content, and I knew he was, but there was no convincing her. (She does not remember this but there was so much going at that time that it probably didn't stand out to her.)

The ability to hide how things really are? Got it. I am very well mannered in a sense and never reveal how I'm really feeling or what is really going on in my life. I find it very difficult to let anyone in.

I've always been very conscious of appearances. Always. Everything has to be "just right" or it won't work. I will change my clothes 6 times before leaving the house if something is not quite right. Going with that, I have to have certain things like my watch or a necklace. I cannot leave the house without my necklace... (I've also worn the same necklace for the last 4 years...)

I think it's obvious that I'm a writer. I used to write poetry. It all surrounded my feelings. Some of it has been published. I feel free when I write. I get lost in the worlds I make. I also draw. I love art. It's something the kiddo and I definitely share. I am also an actress. My first degree (BA) is in theater.

I guess that lets the cat out of the bag so to speak. To go back to the original question, why seek the answer from him? Validation in a world that has time and time again invalidated everything I have ever felt. Confirmation of what I know. The beginning of something to help make sense of my world.

For the last several years I have seen my son in me. It has been both eye-opening and comforting in many ways. I no longer wish to "see how he sees" because I realize now that I already do. As Mutha Lovin Autism said best: He is me. I am him.

Editor's Note: Before publishing this post I did send it to my family and Strike for them to read. I don't want to spring anything on anyone. As I expected, there were no surprises. I have also embraced my happy stimmy self which I'm sure is driving Strike nuts, but he needs to know what he's in for right? ;) I feel free. I feel happy. I feel better than I have in years.

Friday, September 6, 2013

When We Fall...

When a baby learns to talk... She babbles. She makes noise. She keeps babbling. She learns to talk.

When a toddler learns to walk... He falls. He gets up. He falls. He gets up. He learns to walk.

When a child learns to run... She trips. She falls. She gets up. She tries again. She learns to run.

When a child learns to ride a bike... He gets on. He falls. He gets on. He falls. He gets back on. He falls. He learns to ride.

You struggle. You learn. You experience heartbreak. You suffer disappointments. You get up. You dust yourself off. You continue on.

You sit in the office. You hear the words. "He has what we call Autism." You react.

You fall. You get up. You continue on.

You struggle teaching him to speak. To dress. To eat. To just call you "mom."

You fall. You get up. You continue on.

You sit helplessly as you watch your son rage against himself. He wants a new brain. He doesn't understand why it "doesn't work" the way people expect it to. Why can't he be like his friends at school? Why can't he understand what others do? He wants to die.

You fall. You get up. You continue on.

You find yourself holding him. He's raging. He's angry. He doesn't see you. He doesn't see his mom. You are there. But he doesn't see you. He sees anger. Upset. He surprises you with an amazingly powerful right hook to the cheek.

You fall. You cry. Your world shatters again.

What do you do?

What you do next defines you. It makes you. It breaks you.

What do you do?

Do you get up and try again?

Do you decide you've had enough and give in?

What would you do?

I see his frustration. I can see it in his eyes as he rages within trying to get a thought out.

I see him struggle to tell me an idea.

I see him fight to tell me how he feels.

I hear him rage verbally about his brain. He screams that he needs a new one. He doesn't understand why it "doesn't work" like he thinks it should. He beats his head with his fists, leaving scratches and bruises, trying to get it to "work."

I watch him struggle with who he is and the body he is in.

There is nothing I can do to make it better. Nothing I can do to help him make sense of it.

All I can do is hug him, tell him how much I love him, tell him he's perfect as he is, and duck.

I never knew just how much I would struggle as a mom. I cry more than I like to admit. I scream. I yell. I throw things. I totally lose my mind. I have nights where all I want is a drink so I can relax. I am constantly stressed. Constantly on my toes. Constantly in high gear.

I get hugged, kissed, scratched, hit, punched, snuggled, yelled at, smiled at, and gifted. All in one day. Sometimes all in the same hour.

And when I cry, I cry hard. Sometimes it's a single tear sliding silently down my cheek unnoticed, all the upset contained in that single drop. Sometimes it's the ugly cry locked in the bathroom.

When I crack, I crack hard.

But I do the only thing I know how to do.

Get up.

Dust myself off.

And continue on.

My baby is relying on me. He's the most precious gift I have.

Tomorrow is a new day.

We adjust. We adapt. We overcome.

**Editor's note: Whenever I do break down and lost my cool it is rarely in the kiddo's presence. I will leave the room. I will take him to Grandma's. I will do what I need to do to get a break and regroup. We all need a plan. What is yours?**

Sunday, September 1, 2013

Another School Year on the Books

So another school year has begun. I'm sort of over the whole 5th grade thing. Sort of. I'm working on it, I promise! It's just hard to believe that he's reaching middle school (it starts at 6th grade in our district).

Thus far it has gone off without a hitch. I kind of feel like it's the calm before the storm, but we shall see.

Last Monday I took the kiddo to go see his classroom. Due to some major shifting in the district his AS teacher got moved to a new classroom. In order to keep things flowing and have very few surprises on the first day we decided that he should definitely see the room before school started on Tuesday.

We get to the school and we stop to look at the class listings posted on the door. We knew who his gen ed teacher was going to be but I wanted to see who was in his room. I'm reading down through the list of names for him and I pause...

"Hey buddy, you are never going to believe who is in your homeroom!"
"Who?!"

I read her name, that sweet girl that is his 'girlfriend' that he made that Valentine for last year. He let out a yelp and grinned so big I thought his face would crack. He even started jumping around. He was so thrilled! I keep reading through the names and one of his friends, P, from the AS room is also in his class.

Perfect.

We walk on in and start looking for his new AS room. We find it with little effort and Mrs. L is waiting for him. They also have two new, young, male aides this year... (They looked like babies to me but in all fairness they are probably 22ish). Having these two young men in there should definitely be an asset to Mrs. L and her other lady aide, neither of whom are getting any younger. They are probably thrilled to have these young guys available to chase the kiddos.

But I'm getting off topic.

We head on down to the 5th grade pod to find his homeroom. He stops by the LS class and talks to his teacher there and starts talking his ear off about Minecraft. "Hey A, did you read this summer?" Silence. Haha! Like he read this summer.... :D  We then walk over to the other corner of the pod to his new homeroom.

His new teacher this year is one of those annoying bubbly types. The kind that you just want to smack at times... This is actually a good thing for him. He needs that bubbliness to keep him going. He finds his seat, his friend P is next to him and.... Yep. His cute little gf is sitting kitty corner to him.

If I thought he couldn't possibly get more excited, I was totally wrong....

Naturally I kept teasing him about whether or not he was going to pay attention in class or if he'd be too busy staring at her. Haha! ("Mom, you are NOT funny!")

The next morning I walked in with the kiddo, sat with him through breakfast as I always do the first day, and walked with him to his room. This year he gets to go straight to his homeroom to check in. (He used to check in at AS, leave his stuff, and then travel to homeroom for morning stuff.) We arrive at the room, he kisses and hugs me, and travels on in. His gf sees him, her face lights up, and she waves at him.

Ok, I have to pause here. I've seen this girl on and off for 5 years. She was in his 1st grade class. She is deadpan. I have NEVER seen her smile. In fact, Mrs. L and I had just been talking the day before about how no one ever sees her smile. Ever.

She SMILED for my kiddo, folks. She SMILED. MY KID has that affect on her.

Holy crap on toast.......

I need a minute to absorb this....

Ok. Moving on.

I get a note home that the kiddo had a great first day and remained excited all day long. Well of course! From what the aide told me at the end of the day he got to hang out with his gf and his friend P ALL DAY. Naturally he's excited! She also noted that she thinks someone is ready for 5th grade. Well, I'm glad someone is..... ;)

He had homework. Of course. Cause some things are just too good to be true. We had our usual homework battle. Let's face it though, who is ready for homework, and reading comprehension at that, on the first day of school? Not even I am ready for that. But we made it through.

This excitement stayed with him throughout the week when on Friday morning he told me, "Mom, I don't know if I can do this 5th grade thing." To which I told him of course he can! He has thus far, it will be great! In my usual whaddayatalkinabout kind of mom way. He kind of looked at me funny, kissed my cheek, and went on in to breakfast.

So a couple of other things happened this week that are pretty awesome too:

1. He's made me breakfast every single morning. A S'mores poptart, toasted, that he would put on a plate and leave next to my laptop with a little note.
2. He wore a Sonic shirt on Wednesday because his gf told him Tuesday that she likes Sonic. So he HAD to wear his for her. (This is HUGE!!!!) Reports are she loved it.
3. He took a bath every single time I asked him to, all on his own. I realize this shouldn't be big news, but if you've followed me for a while you'd know the hell I'd go through and the battle it was getting him into the tub.
4. He has woken up and gotten himself dressed every single day. I honestly wonder how long this will last and how long it will be before he's sleeping in and I'm dressing him as he sleeps.... But I'll take it while I can get it!
5. His Minecraft playing is down. Like so far down he's only playing maybe an hour a day. As in, in the car on the way to/from school. Honestly, I'm not even sure he played it yesterday or today as of yet. I can definitely live with this... (Although he does still really want the computer version, which he will likely get soon, but on my laptop where I can limit it better than I can on the desktop.)
6. I got him to take an unannounced, unscheduled, impromptu walk on the beach. Successfully.

Let's hope for a repeat next week! Hey, a girl can dream, right? :)



Wednesday, August 21, 2013

He's Growing Up....

My baby is growing up.

Sounds like a pretty obvious statement I know. He is starting 5th grade next week. He is 10 years old.

Over the summer we've been home every day together. Just doing what we do. I've had a first row seat to every thought, feeling, attitude, idea, and quirk to come his way.

I can see the changes.

Mental.

Emotional.

Physical.

It is quite easy to brush aside the mental and emotional changes. They are, after all, not very concrete. Just slips of whispers on the wind gliding by...

The physical changes are a bit harder. He's changing. His body is changing. He's going from my sweet little boy to a young  man.

Ten is a little too young, you think? Not so.

With every wrangled bath, every swipe of deodorant, every dark new hair, each independent new thought, every new inch he grows, I know.

It kind of makes me want to turn back the clock. Try to make up for all those times when I just "didn't have the time" to do so much with him when he was little. I want to embrace the little boy just a little more before I face the man he is becoming.

But I can't turn back time. I can't even slow time. I'm left to only live here in the present moment with him. Snuggling as long as he'll let me. Accepting his many kisses on the cheek. And loving the thoughtful polite little man he is turning out to be.

My mommy heart is breaking. But at the same time, it is bursting with the joy of seeing the amazing person he is turning out to be.

I am, beyond a doubt, one happy and proud mama.

Tuesday, July 16, 2013

He's a Kid!

It's not often I get angry at people. In fact I'm pretty easy going. I also don't often personally encounter people who are just plain ignorant or unable to understand. I don't often encounter people who view my child as being "less" somehow in comparison to NT children.

Often as parents of Autistics (even Autistics themselves!) we encounter some level of ignorance towards our children. It's usually something that, all irritation aside, we can brush off and move on.

It must be something in the air but I've seen so much of it that I have literally stopped dead in my tracks.

I've seen facebook postings and blog entries about people feeling uncomfortable around our kiddos in some way or another. On one level, I can understand that if you aren't sure of how to respond or interact.

Where I draw the line is people who question our judgement. And even I've been questioned recently.

Judgement on what? ANYTHING. I know my son. I know what he can handle. I know his life story. I know myself. I know what I am capable of. I know how to handle things. It's a skill that we learn to hone. Survival depends on it.

If I am comfortable with something, if I say "I've got this," then guess what? I've GOT this. We won't just talk out of our big toe and bluff. We don't have the time or the inclination. It isn't worth the effort.

It's an insane little poetic irony, really. For example, one could trust my judgement on everything. Literally everything. Business, personal, whatever. But suddenly, when my son comes in the picture, my judgement isn't worth trusting?

A wee bit hypocritical no?

I have to say, I'm not too happy with this. How could any of us be? What is it about being Autistic that makes people pause? What is it that makes people suddenly think they aren't as capable as NT children (or adults)? What is it that makes them seem like alien creatures that are not capable of at least basic functioning?

Guess what folks?

He plays the same games your kids do (and is extremely good at it): Minecraft, Mario Brothers, Sonic, Pac Man, Angry Birds, Bad Piggies (which he beat in less than a week).

He loves to play on the playground and go to the beach.

He loves to swim. (I know, I just burst your "but Autistics don't swim!" bubble. You'll live.)

He loves being on the water (he spent the first couple years of his life on a sailboat and still goes out on boats that family has, even canoes).

He loves to watch movies and TV shows. Granted he probably watches a little more Animal Planet and National Geographic Wild than your average kiddo (his aunt was a zookeeper for years), but he loves Fairly Odd Parents, Penguins of Madagascar, Fraggle Rock, the Madagascar movies, the Ice Age movies, Muppets, America's Funniest Videos, Wipeout... The list goes on!

He loves to read! Good lord can this kid read too.... I have more books in this house than I have shelves to put them on.

He loves to draw and create. He's written 5 chapter books to date and he has more in his head to write. He's constantly drawing and molding with clay. He is extremely detailed in everything he creates. He draws every single day.

He does chores, like, real responsible chores. He empties the dishwasher and feeds the cats. He cleans up his toys. Heck, he can even feed himself breakfast and lunch. He just started learning to cook on the stove!

He's in the same class as your kid. Yep, included right on in, successfully! They help him, they play with him, they include him!

He's always thinking. Always crafting. Always developing. Give him a challenge, he'll meet it. I guarantee you.

Well, golly gee... He is... Well... A kid!

They all are!

Do we have to take special considerations? Sure. We have to be mindful of the environment. Who isn't? We have to pay attention to schedules and routines. Who doesn't like predictability? We have headphones for when noises become too much. Makes sense. We are trying out a weighted blanket, mostly to ground him so he can sleep. Honestly, I'd use the thing too! Yes, we recently added a swing into my living room. It gives him the sensory input he needs to be calm and focus. Who doesn't like to  swing or sit in a rocking chair?

Yes, we have to be more hyper-vigilant. We are forced to be more aware. It tends to make us look like helicopter parents. But that doesn't make my son less of a kid.

So explain to me again how my kid is so... "different"? How is he "less"? If kids can include him, why can't you?

And because everyone loves pictures:









Thursday, June 13, 2013

Blessed

We've been so blessed by the people in our lives. Often these people go unsung. You've heard me rave about how awesome my mom is, or my sister, and more recently, M - my fiance.

So in light of Father's Day coming up I wanted to stop and appreciate the men in my life, of which there are three stand-outs so to speak. As in, they are the most important. They are listed in chronological order of appearance. ;)

As you all know, Sparky's (the kiddo, it's easier to call him by something, so a nickname it is!), well, his dad is not around (his choice really). After his outburst when Sparky was 2 about him being "retarded" I quickly washed my hands of that mess. Growing up without my father I knew such a person was overrated anyway. My dad was no winning soul. In fact, I'm pretty sure I am better for not having to deal with him.

Oh no! You cry... How could he (or you) survive without a father or some type of father figure?

Well, for starters, I ended up gaining this pretty stand up guy for my stepdad.

Not anyone could come into a house with a woman and her three growing daughters. Talk about nerves of steel.... My sisters and I, well, we were something of a handful (I'm a middle child, go with that where you will). We'll argue who was worst (the youngest I say!) but all in all, we were quite the trio. He came into this mess, with two kids of his own (b/g, both younger than us), persisted like crazy to get my mom to marry him, and did a pretty decent job of being around. You can imagine that with 5 pretty active kids that there would be a lot to keep up with. He managed to. I get lost keeping up with my one and only Sparky, I can't imagine 5! We all turned out pretty good, if I do say so myself. Sparky and I lived with my parents while I finished college with my first degree until Sparky was 3. Then we moved out. Today my dad (as I often refer to him) is the proud grandpa of 3 grandkids (Sparky is first, then Z, then Ladybug) that he spoils as best he can. While my little sister has been out of high school for nearly a decade, Grandpa's youngest (g) just graduated. His 'nest' is now empty. More time to spoil the grandkids!

Then there is this other guy, a little known guy, a guy who was (and still is) an important figure in Sparky's life. You may recall references to a random guy, R. We'll call him by a nickname, Ears (long story). I have known him for nearly 20 years (man, that makes me feel old!). He's been my best friend for ages. When Sparky was 2, he came home from Iraq (he was there for about 2 years as a Marine). He visited me at college and (as I say) I haven't been able to get rid of him since! We were together for 5 years. During that time he was such a blessing and pillar of support as I finished my (first) degree and went through getting Sparky's Autism diagnosis.  That was a rough period for sure, just trying to get answers and help. Ears stood with us through it all. As Sparky grew and went to school he started noticing his classmates had this guy in their life. This guy who was with mom and did certain things with and for their kids. Something clicked in his head, he put 2 and 2 together and determined that Ears was his dad. To this day he calls him dad intermittently.  If he sees something that refers to "dad" he thinks of Ears. We have never told him otherwise and really, it doesn't matter. Ears is dad to this kid. To this day Ears and I remain close (and yes M knows and is totally ok with this). I still rely on him for support. There's a lot of history and mutual respect there. I'm sure I'd have lost my mind long ago if it wasn't for him. Even at 2am. Sparky even emails him on occasion and loves having that avenue open to him. Ears considered Sparky his own and I know he does to this day. He would do anything for that kiddo...

Now there's M. I'm going to call him Strike. (He was an Army Ranger before getting hit by lightning. True story.) A dad himself of two absolutely adorable kiddos (4/g and 7/b). Kids he lives for. Being a dad is just in his blood. People always comment on how great he is with them and how he has so much patience. I hear that a lot, "He has such amazing patience!" Yeah. I get it. I have very little. I know. He has a lot. Thanks for reminding me... :) There was a time when I actually was very resistant to him.  I know how hard my son is. I've lost relationships over it. But man, Strike PERSISTED.  He wouldn't leave me be. He kept calling and texting and working his butt on in. I eventually gave in... ;)  He is really good with Sparky though. There are days when I'm just about at the end of my rope but he is no where near it. There are days I can't figure out just what it is Sparky is trying to tell me and he gets it right off the bat. (I'm a little jealous of this... :) ) I saw it right away when I met him. Right away. When Sparky had his first meltdown when Strike was watching him and Strike didn't bat an eye. I knew. When Sparky screams his way through each and every haircut that he gets and Strike doesn't bat an eye. I know. When Sparky is up at 3am, in my bed, talking and wiggling around, and Strike doesn't even peep (aside from the occasional answer to Sparky). I know. When Sparky is absolutely losing his mind over whatever and breaking eardrums. I know. When Sparky tells him how he can't marry me and he needs to go away, and Strike tells him too bad cause he's here to take care of him and his mom. I know. Every other guy (except Ears) has run from it. This kid is a LOT of work. He's a lot of frustration. He is a lot to deal with. He isn't easy. Strike just shrugs it off and keeps going. He knows. He understands. He's resilient. He's patient. Damn I'm blessed!

Without these three guys I'd probably be lost. I am very lucky to have them. I'm even luckier that they want to be around. So while I have mixed emotions about Father's Day (you can read about it here), all in all, I'd say we are truly blessed.


Sparky and Grandpa:





Sparky and Ears:




Sparky and Strike:





Yep. Blessed. :)

Monday, June 10, 2013

Just A Day in the Life...

We had a pretty epic day last Saturday. It was just one of those days where the kiddo was himself in the truest form he could be. I'm still laughing about it.

Saturday mornings he plays baseball on his adapted team. This team is actually managed by a couple of friends of mine who have this amazing daughter with Down. She is seriously some awesome stuff, but I digress..... The league was actually thoughtful enough this year to schedule in games with other teams so the kids could actually play a true game (still no score/everybody bats/fields/ect). The kiddo has a real competitive streak in him. He knows how to play and wants everyone to be just as good. The team is a mix of kids from age 5 to 14. We have Autistic, Down Syndrome, MR, a couple I'm not 100% sure on, and even one awesome kiddo in wheelchair. There are about 18 total this year and all but 5 are new. As you know, the kiddo is Autistic and very capable and aware and has been playing for 5 years.

The game started, our kids were up at bat. My kiddo went first. He hit the ball on first pitch then proceeded to run all the bases, escaping the other team (all girls, about 11-12 yrs old), and screaming, "Take that you losers!" as he streaked on by.

Yep. He's my kid alright. :)

He came over, plopped down in his chair next to me and proceeded to chatter on about his hit, yelling at the girls, etc. He's so funny....

Then it was time for the to field. This is where things went a little.... Off? Wrong? Something?

He goes out and does what he usually does. Runs after the ball, takes it from his teammates and runs after whoever is running the bases. Sometimes they humor him (these girls did) sometimes they give him a run for his money (but my kiddo is pretty speedy). He will then hit them with the ball and tell them they are out. It's hilarious!

Not quite what happened for this game... It started off well. But as usual at some point his lesser abled teammates who are new to the game and don't really know how to play, started ticking him off. When a girl made it to base he'd get mad and throw the ball...

After the 2nd or 3rd ball bounce I called him over, told him to not throw the ball anymore, he walked away still rattling off something.... Next batter hit.... Makes it to base.... And his mitt goes flying and bounces off the dirt.

Sigh.... I should have been more specific.

I call him over, tell him to quit throwing things period or I'd pull him from the game (it actually isn't that unusual for me to toss his 80+ pound 4'7 frame over my should and take him off, keep in mind he's 3/4 my size....).

Next batter hits... He runs to get the ball... Hits the outfield and.... slips in the mud and falls. Now he's screaming even louder. He's frustrated and now he's dirty. He HATES being dirty. He starts yelling, "I QUIT, I QUIT!!!"

Then I hear.....

"I FUCKING QUIT!!!"

His one coach and I about split in half. It got reeeeeeeaaaaal quiet. She was standing right next to me and we just kind of looked at each other, hands over our mouths going, "Oh shit......."

Well, he's already walking towards me so I pull him off, sit him down, take the iPad, and tell him he can't say that. I get him somewhat calmed down while the game resumes.

I looked at the coach's dad, who was sitting next to us, and say how I have no idea where he got that word.... Coach's dad looks at me and goes, "Well, at least he used it appropriately."

HAHAHAHAHA!!! I know, right? My kid knows what's up!

Ok, ok. Still not appropriate.... It's hard to yell at him when it's so funny, though. You know?

The kiddo never went back out to field but he did bat again. They only play two innings so the game only lasts about an hour.

On the way home he picked up the iPad and went to use it. I told him he couldn't have it.  This is the conversation that ensued:

K: Oh no.... I think I'm grounded off the iPad.
M: Yeah, yeah you are buddy.
K: Do I need to hit my head on the wall? (He's SIB.)
M: I wouldn't recommend it, you might get a headache.
K: But I apologized.
M: I know, and it's good that you did.
K: So why no iPad?
M: Because that wasn't good. Maybe after lunch.
K: After lunch?! (pause) I think I'm hungry for lunch now. Can I have it early? My stomach really needs some lunch now...

Always remorseful after the fact. Gotta love it!

The rest of the ride home was full of apologies, how he was really upset and couldn't help himself (I know, he really couldn't), and how was he ever going to survive without his iPad. I'm happy to report that he survived. He got it back after dinner before heading off to Grandma's for the night.

A day in the life of the kiddo. Never a dull moment!! ;)

Thursday, May 30, 2013

The Day I Lost Him

With all the influx of news of wandering and the abuse the Lynch family is receiving over their precious baby, I can't help but get upset.

Don't judge unless you know. Don't judge unless you've been there. Quit telling Neil Armstrong what it's like to be on the moon.

Ok. Maybe you don't know Mr. Armstrong but it is essentially what is happening.

These kiddos make professional escape artists look like amateurs.

My son wanders. He has along history of elopement from the time he was 2 and could walk off. He knows no fear. He loves water and we happen to live next to a rather giant body of it up here in the northeast corner of the country. So close, in fact, I could throw a rock into one of the Great Lakes. He knows how to swim. He attended the local YMCA for 8 years. His Autistic Support class at school also goes swimming once a week during the year. It's not fool proof, but it's a step in the right direction.

Two years ago, I lost him. Heck, all 5 of us in the house lost him and 3 of them were fireman. We were out in my sister's neck of the woods at her friend's house while sis's husband and the friend's hubby looked at my SUV. My sister, her friend FFK (who was pregnant at the time), me and our collective troop of kiddos hung out in the house. A and I had never been there before, but knew the people who lived there (FFK and her hubby FFM) We were there for a couple of hours without incident.

We were huddled around the kitchen island (the kitchen was an open space with the dining room and living room) while the kids all played in the living room just a couple of feet away. A has always had a love/hate relationship with my nephew Z. It goes way back to when Z was little (he is 2 years younger than A) and how he has ADHD and always wanted to play (he was a bit too intense for A) and A very much wanted to be left be. Naturally.

Some type of altercation happened between A and Z and both got yelled at by me. One was put on one couch, the other was put on another couch, and time out ensued. A was seething. At this point I don't recall what happened or why he was mad. But the kiddo was very upset (part of the reason for the time out, to help him calm down).

Then it happened. No warning. No sound. It just happened. I blinked and he disappeared. My sister said something to me, I turned to answer, when I turned back just a few seconds later, he was missing. I figured he went to the bathroom or went to another room to get away from Z. A quick bathroom check... No. So we check the room downstairs... No. Garage... No. Well, crap... We go outside.

He's nowhere to be seen. We had been calling his name but he is not answering (he was capable).

5 minutes....

We check the pool. We check the house again, around furniture, closets, under the couch (seriously, you'd be surprised where they'll squeeze into), the bedrooms. Nothing. I go back outside while FFK continues to search the house. My sister joins me shortly after. (FFM and BIL- also a FF- are out in my car test driving it). We walk around the house and check the neighbor's yards, calling his name. Nothing.

10  minutes....

Panic sets in. Where is my son? Why won't he answer? How far could he have traveled? I can see across the fields surrounding the house and I see nothing. The forests (we were in the countryside) are beyond the fields on each side. A major roadway is off to the north. Could he have made it to the woods that quickly? Could someone have picked him up off the road that soon? I start walking. I'm screaming his name...

15 minutes....

Still nothing. FFK is still searching the house. Since she's pregnant she got left to mind the house and kids and watch to see if he comes back. She keeps searching the house. My sister is traveling in the opposite direction of me. She spots her husband on the roadway but can't reach him, he's too far and cell service is bad in the area. Should I call the police? Will they think I'm a bad mother? Where is my son? Why did he run away from me? Could he have made it to the woods? What if he get's hurt? What if we can't find him? He'll never survive the night alone...

20 minutes...

I'm in a full panic. I get a text message out to M. He can't get to me but asks me to keep him posted. Grandma has been called (I don't remember by who). She's out of town so she can't help. I'm still screaming my son's name. Walking across the field towards a baseball field. Is he hiding in the dugout? Why won't he answer? Where is he? Why? Why? Why?

25 minutes...

M asks for an update. Still nothing. I'm still walking. Screaming. Now I'm crying. Should I call the police? Search and rescue? What if they say I'm a bad mother? What if they take him away from me? I'm with the very firemen who would search for him... If BIL wants to bring in reinforcements, ok. I love my son! I am a good mother! Why did he run off on me?

30 minutes...

I'm crying. I'm hoarse. I can barely get his name across my lips. I'm still walking. Still searching. Sobbing. Where can he be? Is he in the woods? Why won't he answer? Did someone take him? He'll never survive the night.... My mind is racing with grotesque images and every worst case scenario... Wolves.... Bears... Creeks.... Strangers....

35 minutes...

M messages me again. Do I need him? He's still delayed. Sis gets BIL. BIL and FFM start driving around the roadways looking for him, they hadn't seen him yet. FFK says he's still not around the house. Another friend joins the search and goes another direction. I can barely yell his name. Grief has taken over. Am I a bad mother? No! Stop thinking that!

40 minutes...

I can barely move. I can't see through my tears. I'm still walking... I'm on the verge of becoming a useless heap in someone's field. Where is my son? Why can't we find him? BIL doesn't see him on the roads. They keep looking. He'll never survive the night... Will they take my son away? Why did he do this? Why did he run? Where is he? Why can't I find him?

45 minutes...

I'm in the field. I can't move. I can't see. I could have been crawling at that point for all I know. Panic and grief have completely taken over... I'm lost. I feel hopeless. I feel like he's gone...

Suddenly I hear my name. The friend who joined the search is running towards me with the house phone. He's yelling. Running full speed to me.

They found him.

Words cannot describe how I felt. Where did they find him? Is he ok? Why did he do it?

I flew back to the house... I was completely overcome with a mix of relief, joy, and (I admit) anger.

Sheer luck brought him back to me. Yes, I said it, LUCK. FFK found him when she caught him sneaking back into the house.

I hugged him. I hugged the stuffing out of that kid. I'm pretty sure I hugged him so tight his eyes were threatening to pop out of his head. I cried some more. I asked him why he didn't answer me, why he didn't respond when he heard his name. I was angry. I was upset. I was hurt. He sat there, mute, unanswering. He didn't know why. Or at least (as I understand now) he had no way to tell me. He knew what he did. You could see it in his eyes. He kept saying he was sorry. He cried.

He was within 2 steps of me for the next 2 hours until we left. He had to remain within eyesight of me. Two.Steps.Away at most. This did mean he spent a considerable portion of his afternoon sitting on the garage floor.

Two years later, I know. I understand. He was mad. He was upset. He wanted to get away from being upset. So he walked off. He was taking a break in his mind. Escaping.

You think it won't happen to you, but then it does. We no longer have time outs. We now have time ins. If you don't know what that is, it's the exact opposite of a time out. Instead of him going to a corner or couch, he sits right next to me. Literally. Until I say he can go, he's stuck hip to hip with me. Time outs are too dangerous now.

To this day he still wanders but nothing like that day. I am lucky in that. Grateful even. He is now afraid of losing me (not sure why but I'm not going to argue the result). He now keeps me within eyesight. 

Locks have been installed (see previous post here) and continuous measures have been taken. I am constantly adjusting as he ages and gets bigger, more independent in ability and thinking. I honestly don't know what I will do when he's bigger than me and older. What will I do when I can no longer force him to hold my hand? I can't harness him. He won't fit into a stroller. I dread those days to come.

The fear remains. It's ever constant. I am hyper-vigilant. I have to be. I became the helicopter parent I never thought I'd have to be. The fear never leaves me. The store. School. Grandma's house. M's house. Aunt's house. It.Never.Leaves.

I will do what I need to in order to keep my precious baby safe.

Rest in peace Mikaela Lynch, Owen Black, Andrew Howell, and Freddie Williams. Angels taken from us far too soon.

Big Red Safety Box
Project Lifesaver
Autism Wandering and Elopement Initiative

Sunday, May 26, 2013

The Wandering Blockade

I'm not even going to sugar coat it. I rarely do anyway. So...

Over half of all Autistic children wander. HALF.

It's a sobering statistic that over 90% of those children who lose their lives, drown.

It's kind of frightening really. Terrifying.

I have nightmares about it, especially this time of year.

My son is one who wanders.

When he was 5, I got him a medic alert bracelet with "Autism" engraved on the front. (It has since worn off but I'm afraid to take it off to get it re-engraved.) On the other side is his name, my name and relation, my cell phone number, and the instruction that he may not understand verbal commands. It is fitted with a special clasp that I can't even get off without the use of two pairs of pliers.



It is a reality that so many of us face. Our day to day lives are spent being the ultimate helicopter parent because, well, we HAVE to be. We don't have a choice. We can't take our eyes off of our child for fear (FEAR) that they will wander off and be lost. It isn't a parenting thing. It's an Autistic thing.

We spend hours installing and reinstalling locks and alarms on the windows and doors so that our child cannot escape and so that in case some window or door is opened, we are immediately alerted to such an event so we can rush to the scene and make our assessment.

My son knows no fear. He doesn't really think anything bad can happen. He is the epitome of childhood innocence.

I have often joked that if the house ever catches on fire, God help us because we won't be able to get out. The problem is, I'm not actually joking.

Front door (the door itself remains bolted):


Side (and main door we use, also remains bolted):


Back (sliding door, this is actually the second alarm I've had installed here, it is usually locked when I don't have it open for the summer breeze but it doesn't work well):



A note that can be found on all three doors to my house (he is an excellent reader):



Kitchen (which leads to the side door and basement), note all the screw holes. I can't tell you how many of these locks have been broken in the 6 years we've lived in this house. (He has since learned to climb on something to open the lock...)


The 1x1 board that prevents the sliding back door from opening:



 The lock in the track that prevents the sliding door from opening when engaged:


 My fenced in yard:





The gate to my fenced in yard, which used to have a bungee wrapped around it. He was able to undo it when he was 6. Now I rely on a 6 foot pole driven into the ground...


My front door blockade, complete with a note in the window warning people to not use this door:


And for good measure: the attic. Yes we actually have a door to our attic. It even has stairs on the other side to up into the attic. It also has plywood boards that make up the floor over the insulation and has and endless supply of rusty nails protruding a good 2 inches holding the roof down (he's only ever opened it once)....



I used to use door knob covers. He can defeat them. Could when he was 4. FOUR. No regular child safety anything works with him. The door alarms will beep and tell me which door is being opened and they are part of my fancy house alarm system. The house alarm is on any time I am asleep. ANY. (Let's face it, I have to sleep sometime, even if he doesn't, and I'm a single mom so...)

The only way we have to beat the drowning statistic is the 8 years he spent at the YMCA learning to swim. This kid can swim better than most people I know, including me. We live a stone's throw from one of the Great Lakes and who knows how many swimming pools. It was a must and my #1 investment so far. Is it foolproof? No. But it's the best I can do here.

Up until recently I drove a small sports car with only 2 doors and crammed him into the back seat so he couldn't get out. My current car is an SUV that has child locks built into the door.

I can't leave anything to chance.  If I do, it will surely mean potential disaster.

To date, (knock on wood) the only time I have ever lost him to wandering was somewhere other than home. The longest he's ever been lost is 45 minutes. Forty-five harrowing, panic-filled minutes of absolute dread. It was someplace we had never been. The only reason, ONLY reason, we found him after 45 minutes, is because by sheer LUCK he snuck back in the house where we were staying. LUCK that HE decided to wander back. (This is a post for another day though.)

He still wanders off at grandma's house, the store, the beach, school, camp, wherever. He gets curious, distracted, bored, or scared and just goes. Completely oblivious to the panic and fear he's left behind in those search for him.

He is always an arms length away. If we are in a crowded place or parking lot, you can bet I have a white knuckled grip on him.

It is a necessity. It is life. It is what is required to keep my precious boy safe.

Big Red Safety Box
Project Lifesaver
Autism Wandering and Elopement Initiative

Tuesday, April 30, 2013

Completely Helpless...

Last night I had dress rehearsal for my show. I was hoping for the best but ended up with one of those situations that I dread being caught in...

Since I couldn't take the kiddo with me and M was up he stayed home with him. We started new data so I talked him through what to do and and wished him luck with homework. I was out the door by 6:20pm. I didn't really anticipate anything major happening. As you know, M and A are two peas in a pod and have a lot of fun together. I figured the kiddo would protest his homework a bit as he always does with me but still do it. I knew M would be able to easily deal with any behaviors and fuss he put forth so I wasn't worried. The kiddo hates homework...

It all started with a text message at 7:06 from M:



We hadn't started yet as we were still waiting for the newspaper to show up to take pictures so I got the message pretty quick:


That didn't go over well.... I am stunned by the reaction...


Did you hear the crack? Pretty sure my heart just split in two... Of course there was no way for me to get to him either so I was left fretting and trying to figure out what to do from where I was. I kept telling myself M had everything in hand and tried to keep from entering freak-out mode...

What felt like an eternity later:


Crap... I have no idea where to go from here. It doesn't appear he's calming down at all and I'm still stuck. I'm afraid to let him off the homework hook (and in a sense giving him negative (avoidance) reinforcement to do this again tomorrow) but I don't want to drive him too far. The decision ultimately falls to me so...


That's right. Mommy gave up the fight. I knew we needed to get the kiddo calmed down asap. Everything is lost once things start flying. I then asked if anything was broken, since I'm an idiot and have antiques out... But in my defense, things rarely get broken and the cat broke the last antique that bit the dust...


Did you hear that? Yep. My heart cracked again.... Him hiding is usually indicative of worse behaviors to come (or a complete surrender, it's 50/50 but I wasn't home...) so I had to ask if there was any SIBs.... Then naturally freaked out in the process....



Then because I can be a jerk sometimes he added:





*corrected to him not home (Autocorrect got him, haha!)

During this time and the following hour I kept running to the dressing room between scenes to check my phone for the latest updates on what is going on. I felt like a crazy woman rushing around, concerned and distracted by what my son is going through and trying to focus on my lines. It was very difficult to do. As you can imagine, it is quite the distraction.

Around 8:13 pm I received this email:



You can see the picture of the homework page he wanted help with and his request for my help. Since the theater is in an old school and is also a nuclear fallout shelter (comforting, no?) I have no idea what time he actually sent it. Signal is really bad in that building....

After A had calmed down, order was restored and he settled to have a snack and snuggle in on the couch. When I came home M told me that the kiddo was so worn out that he fell asleep on the couch early (bedtime is 9) and he carried him up. I went up to check on him and he was sleeping away.

This morning when the kiddo woke up he came and snuggled in. There was no hint of the upset from last night. My only clue that something was ever amiss was that he was slightly clingy and actually snuggled in this morning. Usually he sits on the bed somewhere and asks for the iPad. There were lots of hugs too. He was quite happy when I dropped him off at school this morning.

We are a little baffled by what made him go over the edge like this. Unfortunately there is no way to really know. The only thing we can suspect is that he's been a little more anxious lately. Hopefully tonight will go a little more easily.

I can hope right? :)

Sunday, April 21, 2013

My Guest Post - The Toughest I've Ever Written

I was asked to write a piece as a guest post on the fantastic blog Find My Eyes. It was a very tough piece to write but one we feel needed to be written. For those of you not on FaceBook I felt I needed to link it here so that you could also view it. I was honored to write this piece for him and am grateful for the opportunity to bring this voice out.

He has been doing a fantastic thing this month where he has 30 days of guest blogs from fans, family, and fellow bloggers. It is a wonderful project that has brought out many great voices. I recommend that you go read some of these posts (as well as his other fabulous stuff!) and see what great things have been written in honor of our Autistic kiddos. (You can find his blog at the link above.)

Without further ado, I present his Find My Eyes FaceBook teaser and the link:
Today's post in the continuing Autism Awareness Month project comes from a blogger, Autism Mom Diaries. She bravely tackles one of the most stigmatizing aspects of raising our children... aggression.

What happens when he gets bigger than me?

Thank you for taking the time to answer this question. Go check out her page and give her a "like", it's very entertaining and informative. Tell her Find My Eyes sent you.

Ladies and Gentlemen, I proudly present my friend, Autism Mom Diaries...

http://phatjaye.blogspot.com/2013/04/autism-awareness-month-421-autism-mom.html



Thursday, April 11, 2013

Theatre Baby!

Yesterday I got to confuse the bejeebies out of of the family based team. I told them and our BSC rather casually that he would be going to rehearsal with me that night. My BSC didn't flinch. The FB team did. They both stared at me like deer caught in headlights.

Skeptically, "How does that go?"


Me: Just fine.

"You mean he sits quietly?"

"Wait, he doesn't come looking for you when he needs something?"

"He just sits and does his own thing?"

"How does he know to do that?"

"He just knows when he can talk to you and when he can't (when onstage)?"

"You have never had an issue with him disrupting anything?"

Best.Day.Ever.

No my kid isn't the out of control monster you seem to think he is. Nor am I this totally ineffective mother who can't do jack to teach her child appropriate mannerisms.

My response to their questioning was so simple, "He literally grew up in theater. He just knows."

Those of you who know my story know that I have  B.A. in Theater. I had my son during this time and took him back to college with me. There are many stories of the kiddo doing some thing or other in the theater spaces, backstage, shops, etc. I would set him down and he'd disappear as one of his adopted 150 aunts and uncles would whisk him away to play.

His greatest moment was when I was doing the Costume Design for Candide and he slipped away, toddled up on stage (in the middle of rehearsal), interrupted everyone, and started pointing his chubby little finger and gave his own stage directions. The director (my mentor) nearly fell out of his chair laughing.

He grew up in theater.

He knows when the lights are down, you are quiet.

He knows when the curtains 'fall', you clap.

He knows when Mommy is on stage, she is unavailable.

He also somehow intuitively knows when we take breaks, even if we are still on stage, and will come on up to ask his question then.

He knows to never leave the space. If he needs to, he will find an adult he knows and ask for help.

He is loved in my theater circles.

He even got to be the voice of the little boy when I did Death of a Salesman a couple years ago.

He'll get the autographs of all the ladies on the program.

He lives for it. He knows it. He loves it.

I recall another time when we were rehearsing and on a break when he did a little Charlie Chapman dance routine, complete with hat and cane.

And another time when he gave directions to a lovely friend of mine on some dance moves. She went along with him laughing all the while (I think there may be video evidence of this one...).

During shows, if he has to come with me, he sits quietly off-stage in the back corner, watches a movie and draws. If he needs to leave the green room for any reason, he knows which adult to ask for help (don't ask me how me hows stage appearance order, but he does) and they are more than happy to help.

Autistic or not, when you grow up with something, something with definite rules and boundaries, they become second nature to you. You just know. You just do.

So tonight when we go to rehearsal again, I know just where he will be. Sitting 3 rows back, left side (down stage right), 2nd seat in, playing on his iPad and munching on Cheetos.

He is my theater baby. :)

 Playing in the wood shop....


In the green room with Mommy...


In the dressing room while Mommy directed the Wardrobe crew. (He loved Brandon's spot the most!)


This mannequin in the Costume Shop brought him great joy.


Thursday, April 4, 2013

We adjust. We adapt. We overcome.

Often when we talk about our lives with Autism we keep it sunny. We try to show the lighter side. We are hesitant to share the dark moments, the negativity, the trials, the tribulations, the tears.

We are afraid.

We feel hopeless.

We don't want the "stigma."

The reality is, we face some pretty hard stuff with our kiddos.

We deal with self-injurious behaviors. We deal with aggression. We deal with meltdowns. We get hit, punched, bruised, and cry. Sometimes it's a rare occurrence. Sometimes, it can be daily.

It isn't often that anyone speaks about it. Often, when someone does they are criticized and called horrible parents. Those that judge are those who have no idea. They have no experience. They have no understanding. Or, if they have kiddos on the spectrum, they are in a deep state of denial that they cannot possibly admit that they sometimes feel like failures. That they too, do these things and feel what they feel. No one wants to admit that it can happen to them.

We try to know all the answers. We pretend. We fight. We put up a strong front.

I don't care who you are. Mom. Dad. Grandma. Grandpa. Aunt. Uncle. Sibling. Friend. You do it too.

This is the voice that is lost. This is what we are missing. This is the part of our journey through the adventure of life that can help others not feel like an island.

Don't get me wrong here, though. Are things often fantastic? Yes. Do we love our children unconditionally? Yes. Do we accept them and love them as they are for all their quirks and hardships? You betcha. Would we change them? In my case, absolutely not.

But surely the world cannot expect that our children do not misbehave. That they do not have meltdowns (not the same as tantrums!). That they do not have off moments.

That would be as lacking as the assumption that they are not loving, fun, enjoyable, creative, little human beings with a ton of love and happiness to share.

My son loves to be happy. He strives to please. He's very creative. He's even working on the 4th book in his little chapter book series. He is the most loving child I know. He wants to snuggle, play, dote on the cats, and create. He is a great inventor after all. :)

But even we have our off moments. Our not so sunny days. It would be wrong to deny us that admission. It would be wrong to judge us differently or more harshly as a result of it. We aren't any different. We just have different trials.

We adjust. We adapt. We overcome.

Friday, March 29, 2013

Bad Moment vs. Bad Day

Lately we have been working on coping skills at home. We are trying to make A more aware and use coping skills when his behavior slides so that he can recognize when he's having trouble and take steps to deal with it, be it a break, snuggle, whatever. When he has an overall good day, he earns a Squinkie. This has led to great discussions on behaviors and him (hooray!) asking for help when he feels like he may come apart. He is very aware and insightful and this has helped quite a bit. He wants to work on his behaviors.

Yesterday the kiddo was having a few rough moments. Every time he'd fall apart he would enter this woe of having a bad day. We had a conversation several times (on repeat) and it would usually end up similar to:

A: I'm having such a bad day! (Crying)
M: No, you aren't having a bad day, just a bad moment.
A: No! I'm having a bad day! I can't do it!
M: Did you have a bad day at Petsmart?
A: No.
M: Did you have a bad day at WalMart?
A: No...
M: Did you have a bad day a few minutes ago?
A: No...
M: See? You aren't having a bad day, you are having a bad moment.
A: Mom?
M: Yes buddy?
A: I'm having a bad moment!!

This morning so far he has spent in total tears for one thing or another. He was playing Bad Piggies on the iPad in my room while I slept. He kept screaming and yelling at it and I kept telling him to stop and take a break. A break, of course, that he refused. Perseveration is hard to break... After about 2 hours he decided to go downstairs and build some more Mario levels on my laptop (we have a special program that allows him to create away with every Mario Nintendo feature you can hope for).

It wasn't long before I heard him scream. Apparently Lakitu isn't cooperating. I manage to get him back up to my room and the floodgates have opened. He's gone from angry to all out frustration and upset.

He is not having a good morning...

He curls up into a little ball on my bed and I sit here and hug him. He snuggles in more and starts talking, telling me everything that has him so upset. (Such a blessing!) I say, "I know buddy, you are having a rough day."

He pauses for a moment and says, "I'm having a bad moment!"

He's now happily laying here playing Bubble Pig. I stand corrected. :)

Sunday, February 24, 2013

Maybe, Just Maybe...

I am currently reading Loud Hands Autistic People, Speaking. If you haven't picked up a copy, do it. You will be thankful you did.

As I sit reading this anthology I can't help but cry. I cry on just about every page. But I'm not crying in a bad way. I'm crying in a good way.

The more I read the more I think that maybe, just maybe I am doing things right for my son.

Maybe, just maybe, I am not screwing him up...

When I send away or cancel TSS's and therapists because I know he doesn't have the ability (or spoons) to do anything more that day.

When I let him roam freely around the house lost in his own world chattering for hours on end without interrupting him, unless absolutely necessary.

When I allow him to hole up in a corner on the other end of the house for hours without batting an eye.

When I take him for a car ride at 10 pm because he can't sleep and wants to feel the vibrations and peace of the car.

When so-called professionals criticize me for not being strict enough, enforcing enough, drawing some boundary or another, and I let it roll off because they don't know him like I do.

When I let him crawl into my bed at 2 am because he needs the sensory warmth and pressure of my arms hugging him.

When I'm criticized (again) for not "structuring" his weekend into perfect schedules, instead preferring to let the days go as they may (which he needs after a structured week).

When I break things down into more manageable pieces so he doesn't get overwhelmed.

When I allow him to perseverate, stim, flap, whatever, away without so much as batting an eye.

When I allow him to feel the fabrics of any prospective clothes to make sure he can tolerate how they feel.

When I feed into his Super Mario "obsession."(Which I get criticized for too.)

When I continually ignore the latest Autism "must try" trend. (If it isn't broken why fix it? And y'all know my view on "broken.")

When I let him pick dinner nearly every night instead of having it be a reward (yeah, a reward? pshaw!!) even if it ends up being the same thing 5 nights in a row.

When I remain flexible and open to the fact that I might be wrong.

When I stop and listen. Truly listen. To him. To other Autistics.

When I adjust my day, my schedule, based on the spoons he has left so I don't stress him.

When he is unable to speak and I give him a pencil and piece of paper to write or draw instead.

When I make him promises, no matter how crazy they seem to others, and keep them.

When I let him, be him.

Isn't that what loving and cherishing your child is all about? Embracing every bit of them, adjusting your reality and your perceptions, to give them an emotionally positive, validating environment in which to grow and bloom?

I am told I spoil him, I'm not strict enough, I'm too flexible, I cater to him, I enable him, etc.

I disagree. I love, support, and embrace him. I'm sensitive to his needs, and for good reason.

I have one heck of an amazing young man in my house. I am proud to be his mommy. And I know he's thankful to have me. Heck, he told me he was the luckiest boy ever to have a mom like me. :)

Thursday, January 31, 2013

Sometimes the most well intentioned things, aren't.

Sometimes we do things with the best intention in mind. We do what we feel is right for the time and situation. We study. We research. We ask. We think we have it all figured out.

Then we realize we don't.

If you've been following my page for the last couple of months you may see where this is going. The kiddo was diagnosed ADHD last summer. I had held of on doing it officially but decided that it was time so we could do something about it as it was affecting him at school. You can read about it here. The problem with Autism/ADHD is that it is EXTREMELY difficult to know what is the Autism and what is the ADHD. Extremely. Like, to the point of impossible and it's really just a guessing game.

Naturally, the doctor wanted to start him on a stimulant. This seemed to work at first but every couple of weeks it would seem to wear off and they'd up the dose. Eventually we got to a point where it couldn't continue. By the end of November his tic was so bad he couldn't speak, he was getting headaches, he was drawing incessantly (and crying over how he couldn't stop himself), and he stopped sleeping entirely for 2 weeks until he was pulled from that medicine. (It took that long because the doctor was consistently out of the office and the nurses were afraid to pull him off of it due to the nature of the drug. Ugh....)

They switched him to a non-stimulant. I won't go into detail but let's just say things got a lot worse and reached crisis levels. Every day wasn't all bad, just a lot of not so good stuff. My son was gone. He was saying and doing things that no parent ever wants to experience. His main complaint was that he didn't feel like himself. He was depressed. He was angry. He was irritable and uncooperative. The agency he gets services from was becoming increasingly concerned. We got in to a psychiatrist to take over management of his medications. We got approved for family based services.

Our first appointment with the psychiatrist was earlier this month. My first words? I HATE his medication, it made him WORSE. The recommended medication change was as I expected: Risperdal. It is very commonly subscribed to Autistics. But I had a very important question for the guy. The question is this: how do we know that his behaviors aren't a result of him being a high anxiety child? What if he's unfocused because he's busy worrying about his plush toys or if mommy will be home tonight? What if he's just appearing hyper because he is nervous and antsy over what may be happening later? What if his tantrums and meltdowns are solely because he is so worried about something that when he's prompted to do something it causes an abrupt stop in his thought train that he just can't cope and we don't know that is what is happening?

I wanted to STOP the GUESSING GAME!!!


He seriously just sat there and looked at me for a minute. Then he agreed with me. Then he suggested a much more conservative approach. We are trying a low dose anti-anxiety medication. 

It has been a little over 3 weeks since we quit his last ADHD medication. It has been 3 weeks since he started the anti-anxiety medication. While the new medication has not been around long enough to do anything significant yet it has been plenty long enough for the other stuff to get out of his system.

The results are amazing.

To put it simply, I have my kid back.

He's running. He's jumping. He's giggling. He's grinning. He's cracking jokes. He's the goofball we all know and have been missing all these months.

When asked how he feels.... He is saying HE IS HAPPY!


My intuition has been that we were missing the mark. It seems my intuition was right.