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

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.

Migraines, trantrums, and "wth?"

When you suffer from migraines frequently like I do (the kind that never actually go away, leave you literally on the floor, eyes squeezed shut, completely down for the count and incapable of even making a squeak) you end up with a lot of time to think. Since you can't do anything else but lay there and you don't really want to dwell on the fact that your head will probably explode at any second, you try to occupy yourself. 

Today as I laid on the couch with two of my kitty pride purring away all cuddled up with me, while my totally awesome and thankfully pretty independent child kept as quiet as he was physically able, very mindful of Mommy's ailment, I had that opportunity. These are the kind of moments you have as a single mom where you have those "what if" and "holy crap" moments. While I have learned to function despite the pain, nausea, sensitivity, etc, that goes with migraines, enough to know that if something major happened I'd still be able to work our way through it, I still freak out a little over not being able to respond.

This thought path led me to think about how hard it is to be single mom with an Autistic child. I have pretty much spent the last (almost) 10 years raising this kiddo alone. I've been getting these knock down, drag, out, ha-ha you can't do sh*t today cause of me type migraines for over 15 years. Never did I think I would ever have to figure out how to manage the two. All I can say is, "Thank god my mom lives so close!!!!" Over the years it has become a less frightening thing for me as my son gains independence and knows what do to do if something happens. Granted he'd most likely call Grandma before 911, but I'll take it!

This then led me to think about how hard it is in the dating world to find someone who can honestly handle kiddos like mine.  Thankfully, I found such a guy in my fiance, M. He is actually a little upset that he is out of town right now and unable to be here during this current episode. All I can think is, "How lucky am I?" while I sit and smile to myself. In the past with guys I've dated, they've just avoided me like the plague. This guy wants to be here, knowing all he can do is curl up with me on the couch, make sure I'm ok, and take care of my son.

Holy golden jackpot, Batman!

This then led me to think backwards through our relationship and how M has been with my son. There was a very defining moment for me, early in our relationship, where I knew we'd be ok with M. We had been together for maybe just over a month.  I had to go to rehearsal and M said he'd watch the kiddo and everything would be ok. This stopped me dead, for two reasons really. One: I never leave him with anyone who doesn't know this kid inside and out, and two: I was sure that the relationship would be heading out the door in the days following... After all, at this point I was used to people running from our situation. After he assured me many times over and told me to get the hell out already, I went to rehearsal, frequently checked in, got reports that all was well. When I got home both were all smiles and they were watching Over the Hedge. I sent the kiddo to bed and everything seemed fine.

Then that defining moment happened.

When I came back downstairs I sat on the couch. M looked at me and said he had something to show me.  While I was gone the kiddo had misplaced a toy. At the time he was still very much of the mindset that if it wasn't where he thought it was then it was gone forever, stolen, missing, he'd never see it again. Well, apparently he lost something. M had recorded the ensuing tantrum partly so I could see what happened, but I think, mostly because he was actually quite amused by it. Why was he amused? Well... M is an extremely laid back kind of guy, very sharp contrast to me for sure. Not much ruffles him at all. My son can be overly dramatic and somewhat theatrical.  Picture a scenario like this:

A is laying on a stability ball, crying, screaming, yelling, just losing his mind, incapable of listening to reason.

A: It's gone! I'll never find it! Mom will be mad cause I lost it! (screaming continues)
M: Well, if you can stop crying long enough and tell me what it looks like then we can find it.
A: It's gone! I'll never see it again!
M: It's not gone, we can find it. Why don't you tell me what it looks like?
A: (screaming and sobbing) It's gone!!! I'll never get it back!!!! (more sobbing)
M: A, we can find it. I promise. If you can tell me what it looks like I can help you find it.

This goes on for about 5 minutes or so when...

A suddenly stops.... Looks at M.... And asks hopefully, "We can find it?? Really?"
M: (chuckling at how it suddenly and finally sunk in) Yes buddy, we can find it. What does it look like?
A: Let's look for it! Maybe we can find it!
M: (more chuckling)

The wayward toy was found within 5 minutes.

Throughout the exchange you could hear M give a little chuckle during the times when A got overly dramatic (which I will admit, those moments really are funny). What got me the most, was how calm M was the ENTIRE time and how he instinctively and simply talked A through the crisis. M just kept on talking to him, trying to talk him down and realize that the world was not ending.

That's exactly what I do with him. Well, bugger. And it just came to him naturally.

I never hesitated over the idea of leaving those two alone together from that day on. The two of them are like partners in crime hiding evidence of ice cream cones and comrades in arms when ganging up on Mommy. And let's face it, sometimes he's better at handling times of crisis than I am!

I snuggled down further into the couch pillows and kitty fur. Yeah, we'll be just fine. Are we lucky or what?

The First Week has Come and Gone....

Whew! The first week of school has come and gone and we survived. Both of us. We had a few homework battles but that is to be expected, right? It seems the Star Chart and earning the Mario plush toys has been a huge motivator for him and works wonderfully as a behavior modification plan. It has become one of my greatest ideas! Even his BSC is impressed. She even mentioned it in a meeting with her coworkers and supervisors! Whoo hoo!

Anyway, back off the side road... I've added a couple of things to his "required" items that are school related that I like quite a bit. Not only is homework one (being our biggest battle and I was forewarned he'd have math homework every night) but reading me a book is also one. On nights he doesn't have homework like Fridays and weekends? Well, he can read me another book. That makes two books and he can get his homework star! It's a great way for him to work on his reading fluency. (Can you tell I'm a teacher?)

This has actually worked out well. My fiance and I just love listening to him read. He'll do all the little voices of the characters and uses inflection! It's pretty impressive really. Not to mention how he does love to read. We have more books in this house then I have shelves to put them on! Every time the book fair comes to school this kid gets to go with a surprising amount of money and get several books. The teachers looked at me funny at first, but now they know! He'll spend every last dollar! He even helps the school aides set up the book swap and they'll let him choose a couple books in trade. He keeps bringing out books to read that I've never seen before!

What makes this chart even better right now? Since he has his own chores to do, like feed the cats and empty/fill the dishwasher and my favorite -clean up his toys, it leaves me a little more time to work on my classes for my Masters (Special Education for anyone who isn't aware). So far my house has remained relatively clean and therefore, my sanity is remaining somewhat intact. I HATE clutter. It messes with my mind. I also hate stepping on toys. Especially Legos. What makes those things hurt so much?

Anyways.... His ADHD meds haven't done a whole lot yet so his doctor doubled them. Hopefully we can see some change and we never get to "hell week." That week should be coming up soon. You know, the week where the novelty of new teachers and new classmates wears off and all hell breaks loose? I'm hoping that this year, it never happens.  Guess we'll see.

Another great thing? Sleep. Yep, I said it. He's SLEEPING! Since the melatonin dose was so high and not being effective his doc put him on a sleep aid and by golly.... It works! He's asleep within half an hour and out cold.... ALL NIGHT! Holy cow! No more 4 am eyeballs peeking over the edge of the mattress! HOORAY!!!!!!!!!!!!!  I've gotten comments about how much more rested he seems at school and how he's in a much better mood walking to his class in the morning than he was last year or any other year. Yes!  Since I drop him off in the morning before school starts now he is able to wake up on his own and start his own day before we go. This is a huge plus since it's his natural clock at work here! Dropping him off and picking him up at the end of the day also gives me the face to face time with his AS teacher and aides. They actually told me last week that since they see me every afternoon they weren't going to write in the communication log because it takes too much time and they'd just talk to me when I picked him up. Ok! We still write notes obviously if need be and can contact each other by cell phone.

So far 4th grade is shaping up to be a pretty good year for him. Here's to hoping it continues!

A Pastor's Response...

A couple weeks ago I posted a response to Autism Daddy's blog on the religious view that parents take on "God won't give us more than we can handle".  He even takes the time to pull apart what people are using to found it on from the Bible.  You can read his opinion here and yes, he also has a son with Autism who is not as able as my own.  I LOVE his response!!

You can read my original post here.

Autism Daddy's post here.

Assault on the Home Front...

In the last week I have alluded on my Facebook page to a rather nasty event that happened in our lives.  I wanted to take a moment to address that now that I have calmed down a bit from it.  I will no doubt get worked up as I write this but in that case I still have carpet on 2/3 of my living room floor that I can rip up and a couch to take a sledgehammer to.

Where we live is not far from the beaches of Presque Isle.  During the summer on Wednesdays there is a beach concert for the general public.  It's a great event and we go as often as we can and meet up with some friends.  Last week it turned rather tragic for us.

The gist of it is: My son was playing on the edge of the water, minding his own business, doing his thing. He started to pick up stones and drop them literally right in front of him to watch them splash. Suddenly some stranger - some older female - decided to grab his arm, start yanking on it and yell at him. After she let him go he came running to me very upset with marks on his arm. So I approached her and asked why she was grabbing my child. She started on me about how I'm a bad parent and needed to watch my child. I said that he wasn't doing anything wrong, there was no one around him, and asked again why did she grab him and how could she think that was ok? She started on me again about how I'm a bad parent and needed to watch my son. I told her I was in fact watching him and you can't just grab people's kids. Her friends then started on me about how I'm a bad parent and should watch my kid. They started yapping about him tossing stones. I said he wasn't throwing them at anyone and that he's Autistic, so what's her excuse for her behavior? Her only retort (broken record) was that I needed to watch my kid and I'm a bad parent.  I told her very simply to do not ever touch him for any reason.  She then said (and I thank her for this admission in front of hundreds of witnesses) "I never would have grabbed him had you been watching your kid!"  I said very firmly, "never touch my child or any else's child." And walked away to find a lifeguard, leaving her in hysterics behind me.

Not surprisingly when the Park Rangers showed up she bolted. Nothing says "guilty" like.... Her friends stuck around though and several witnesses spoke up for me and confirmed what happened. This sad excuse for a human being ran cowering home.  She obviously knew she did something she should never have done.  They'll get her and she will forever be known as the woman who assaulted a 9 year old (disabled) child, unprovoked.

Had anyone done that to her child no doubt she would have been up in arms herself.  I'm still amazed that she could even have seen anything with her back to the water, her own child and consequently mine as well.  Apparently she just felt the need to be a monster.  Well, her genius qualifies as simple assault, a misdemeanor in the first degree (he's under age 12).  Not so brilliant on her part after all is it?

There is a report that is being written up by the Park Rangers.  You simply cannot do what she did.  You find a parent, you use big girl words, you say "honey I don't think you should be doing that."  You NEVER grab a child and certainly not with violence.  

There has been a lot of outrage over what happened.  My friends, family, and others we know are all astounded that this could even happen.  Even the lifeguards seemed to initially think she was trying to kidnap him.  The rangers appeared to be baffled as well.  Who would think it's acceptable or appropriate?  And this has definitely affected him.  My finance and I keep finding him under the bed in the middle of the night.  He wakes up crying.  He's been extremely clingy to the point where I can't leave the room without him panicking.  Over the weekend we even saw some pretty serious self-injurious behavior.  We've also seen a lot of baby-type behavior from curling up in my lap to using a baby voice to call for me and tell me he loves me.  Some major regression in terms of his behavior has also happened as a result.  It's like my 9 year old high functioning child has regressed to a 2 year old.


The bonus here is that since he is Autistic I was told he would not be made to testify.  The ranger informed me that they would not take the risk to stress him out any more.  It scares me that she has a child (children?) of her own.  If she's willing to assault a perfect stranger's child, what does she do to her own child at home?


My son has been very appreciative of the support he has received so far.  He was extremely confused for days because he knew he did nothing wrong and couldn't figure out why she would do that.  The rangers and lifeguards also told him he did nothing wrong.  He doesn't understand still what happened but has started to realize that he was not at fault and she was just an awful person.


I will post updates as they happen.