Monday, December 10, 2012

Welcome to the circus!

Last Friday there was a circus. Well. Sort of. The Autistic support and life skills classrooms at the school have been working with the physical education teacher on different skills. You know, rope swinging, balance beams, hurtles, the like. They even prepared a couple of songs and dances!

One problem.

My kiddo goes to gym with his regular education class (he is the only one who does). He kept saying that he couldn't do the circus because he was too embarrassed. I kept telling him he would be ok but to no avail. As chance would have it I subbed at his school that morning. At some point in my morning I looked up to see one of his aides at the door. She said he was adamant that he was not going to do the circus and to find them before I left.

Oh boy.

So before I left (and about 2 hours to circus time) I went by his AS room and found him there on the computer. I asked him why he couldn't do the circus and he kept insisting that he would be embarrassed. I knew there had to be more to it because this kiddo is active and agile and he could do everything that they were going to demonstrate for us.

I thought for a moment. Then it hit me. They started rehearsing for the circus around the time of his surgery in November. He goes to class with his regular education classroom, not his AS room. AHA! So I asked him, "Is it because you didn't get to practice enough?"


Bingo! So we made a deal. I was going to come anyway "just in case" he changed his mind. When I got there I would sit right up front and he and his TSS would join me. He could skip the parade in and the little song and dance number (he's not a big dance-y kid anyway). But when it came time for the skills he would join his classmates.

This went somewhat successfully as he walked with clown feet, did a bean bag toss, swung on a rope, climbed some rope obstacle, and walked the balance beam. He skipped juggling, plate spinning, hurtle jumping, and scooters. Then he parked it right back beside me for the rest of the presentation.  And took pictures with my phone. Oh, the number of pictures he took!

As for the rest of the kiddos, they proudly completed their tasks while stimming, running lose, and screaming their little hearts out. I would say it was a day for all of us parents (and grandparents) to be extremely proud!

Sunday, September 30, 2012

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?

Monday, September 3, 2012

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!

Friday, August 24, 2012

Love this kid!

Have I mentioned lately how much I love this kid?

No really. He totally rocks. I know, we are all supposed to think that of our children but really, he's the best.

Sure I get frustrated. Sure I want to throw things, yell, scream, hole up, etc. But really, at the end of the day, he is truly my heart.

I've been counting down the days until school starts (2 days!) like all parents do. How many days it is until we can get that 6 hour break, 5 days a week. When I reflect back on this summer, the first summer ever like this one, I have to say.... I just may miss him.

This is my first summer where I didn't work. For 9 years I have worked 40 hours a week (and in recent years had summer courses for my Master's) and had so little time to spare. This summer he was away for one day a week. He went to the local YMCA every Monday and had one heck of a time at Camp Sherwin with his TSS in tow.

We spent 99% of our time attached at the hip. There were times when I was quite certain that what was left of my sanity would just fly right out the window. He would sneak into my bed in the middle of the night. Curl up with me in the morning. Interrupt my showers. Follow me around the house. Accompany me on every errand. Even go out to dinner with me and my girl friends.

He saw more of his mommy's daily life in one summer than he has the previous 9 years combined.

His BSC asked me yesterday if I had seen any of the behavior we saw at the end of the school year. He was clingy, would cry easily, and was constantly fearing that I didn't love him for some reason.

You know... I haven't. She said this summer must have been great for us, it allowed us to reconnect and he got to see how much he is loved.

Well damn. She's right.

I think back to all the lazy mornings. Announcements of being out of some food item or another (seemingly every day). Paper creations everywhere. Legos.... (Nuff said!) Pleas to stay up (not like either of us had anyplace to be!). Road trips. Explosions from the microwave. Strange noises I'd hear as I lay in bed quickly followed by "It's ok mom! Everything is all right, I promise! It was nothing!" I can't help but chuckle.

Last night I told him he had to start sleeping in his own bed. I barely had it out when he asked why. I told him he needed to get ready for school to start. I could see it in his face. As excited as he is for 4th grade....

He isn't ready for summer to end either.

Sunday, August 12, 2012

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.

Wednesday, August 8, 2012

The time had come...

Several years ago I had taken my son to the Children's Hospital in Pittsburgh to get a second opinion/evaluation on his diagnosis.  It was a long tedious visit as my mother and I sat through many evaluations, filled out forms, and moved from waiting room to waiting room inbetween.  At the time I was offered medication for him to help combat some of his hyperactivity and because "many Autistics simply benefited from it." I ran.  The psychologist told me that if I ever wanted to consider the medication to let her know and bring him back.

The hell that was going to happen, right?

So here I sit, 4 years later.  He can't focus.  He's bouncing off the walls.  He has major impulse control issues.  He knows something is wrong and wants to be 'fixed'.  It's affecting his every day interactions and his ability to work at school.  Sigh.  The time had come.

So last May I called his pediatrician's office.  They sent me the forms I was already so familiar with.  I filled them out.  So did my mom, my fiance and his AS teachers at the school.  The end result was confirmation of what the psychologist told me 4 years prior, he has ADHD.

Last night I went and picked up the medication.  Let's just say 'mixed feelings' doesn't even begin to describe how I feel.  Four years ago I ran with the argument that he's 5, he's a boy, he need to run and play and be a normal kid.  Watching him over the last year has been extremely difficult.  I can no longer use that argument.  I can handle all the items that got broken.  The bumps, the bruises.  What I can't handle are the meltdowns and requests to be fixed.  The endless energy that sends him literally bouncing from one wall to the next.  Him crying over there being something wrong with him and needing a new brain.

He has been kept up to speed on what the doctor's visits were about and what the medication is for.  He has been anxious to start it.  He is aware that it is supposed to help calm him down and allow him to focus better.  When we got home last night and counted the pudding he wanted to take it right then.  (He can't, he has to take it in the morning before breakfast. Since he can't swallow pills we have capsules that I have to open up and put in something he'll eat.)  I then sat down to look at the information sheets.  Within the first couple words were "sudden death."  I near fainted...  Not what a mom wants to see, you know?  But I sat there and kept repeating that it only happens in people with heart problems and he had a normal EKG.  Something I am still repeating to myself today...

Needless to say this morning the first thing he thought of was the pudding.

It's been a couple hours since he has taken it and he is just fine.  I feel a little better.  But I can't help watching his every move.

Tuesday, August 7, 2012

It's ok, I'll sleep when I'm dead...

Sleep seems to be a thing of the past in this house.  My son has woken up in the middle of the night for the last couple of weeks and seems to have lost the ability to get himself back to sleep.  What ensues is lots of running up and down the hallway, lights turning on and off, and lots of being startled awake by a face sitting way to close to mine, watching me....

We have the rule that he cannot leave his room before 6:30 am.  This has actually stuck much to my relief.  He used to get up at 3am and go downstairs and play on the computer.  Since I locked the computer down and it won't let him access it before 6am that has died.  (Microsoft provides this service/software free and is FANTASTIC!)  But of course that means when he wakes, we are in close proximity to a wound up child who quickly gets bored.  The result?  No one sleeps.

The weird thing is you'd never know he was up so early.  He's always so bright eyed and grinny while the rest of us drag through the day taking naps by midafternoon.  I've never understood how that whole thing works.  If he falls asleep and wakes up, he's fine all day.  However, if he doesn't fall asleep before midnight because he has trouble falling asleep, he's one cranky terror all day.  He could get the same amount of sleep or less sleep in the first scenario, and it would still work like this.

I'll admit, there are nights that I am so worn out from several of these nights in a row that I don't even wake up for him.  He may sneak in with me or he may stay in his room.  The blessing is, he doesn't go downstairs.  It may be the ONLY rule in the house he doesn't break.  I'd swear it's the only one he actually knows how to apply to himself.  What does he do during those long dark hours?  Who knows.  Mostly read.  I always find books scattered across the floor.  He also has his dvd player up there although I'm not sure he actually plays it.  He really does his best to stay quiet so his mommy can sleep.

However, it seems that the more often this occurs, the more likely it is that he will sit on the bed and chat.  I don't know what he's talking about most of the time and I admit I mostly just grunt and make noise to acknowledge what he's saying without knowing what it is he is saying.  Trust me, it isn't easy to process Alexese when you are barely awake and your brain is not running up to speed.

After all, it is 3 am.

I do give him melatonin.  This has been a BLESSING.  He gets a pretty decent sized dose but it's my only defense to get him to sleep.  It's a well known fact that Autistics lack melatonin.  There is even a new study out there that suggests mothers of Autistics actually have reduced levels themselves and there could be a genetic link (hmm....).  I believe it.  Thousands of parents with ASD kiddos have discovered this lovely little white pill to help their children sleep.  And it really makes the difference between good days and bad days and really really bad days.  I honestly don't know where I'd be without it. However....... While it helps them get to sleep (usually within a half hour) it does NOT help keep them asleep.  That's where our trouble is.

I keep telling myself that someday he'll sleep. Someday. It's like when you have a baby and they wake every 4 hours. Someday, they sleep through the night and it is the best night of your life.


Sunday, July 15, 2012

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.

Saturday, July 7, 2012

A Rare Glimpse: My Thoughts on Autism and God...

I recently heard the argument “why would our God want to give a child a disability like this?” in reference to the many who say things like “God doesn’t give us more than we can handle” and “God needed to place another child with Autism on this planet so he chose me” and an apparent favorite “it is a gift from God.”  I have to say, I kind of agree.

Before anyone fries me for that let me continue.  Everyone is welcome on my page regardless of your religion and I have no intentions of taking any kind of religious platform.  This is merely my thoughts on my views and the argument that was presented.

To also make this clear: I LOVE my son.  He is my whole world.  My rock, my angel, my beating heart.  I would not trade him for anything.  He is and always will be the best thing to have ever happened to me.  He really is God’s greatest gift to me.

That said...

It has been my mantra for a while what everyone else has been convincing themselves of.  I guess it makes us feel a little better to sit back and tell ourselves that this mysterious God wouldn’t give us more than we can handle.  I have to say, those moments definitely exist where we REALLY need something to help us get through the ugly.  It can make things a little easier to deal with.

But when you think about it, why on earth would God give people disabilities??  Especially some that are on the extreme end?  The argument was made by a dad who has a child with severe Autism.  You can read about it HERE. Severe as in nonverbal, headbanging, low functioning, mentality of an 18 month old, and the child is 9. He and I do come from different worlds of Autism.  Still, he makes a valid point. He was raised Catholic, but is no longer a practicing one.  He makes the argument regardless of one’s religion saying he doesn’t see how a god could possibly want to give someone this life of total disability.  Now he does view his son as a gift, as we all definitely do.  My son truly IS a gift to me, the BEST.  But Autism as a gift?  I agree, let’s give it back.

I do not wish to have a “gift” that is so “fantastic” that it separates my son from other kids.  I suppose it wouldn’t be so bad if he was completely oblivious to it, but he’s notHe knows he’s different.  He knows he isn’t like other kids his age.  He honestly thinks there is something wrong with him and is always, ALWAYS, asking to be “fixed”.  He tells me all the time that he needs a new brain...  Would God want to make a child that miserable?  Where he asks all the time to be “fixed” and since there is no fix for him reverts to how he needs to just die?

I envy  Autism Daddy, because his son is truly completely and totally oblivious to anything around him.  He doesn’t know he has severe Autism and is different from his peers.  He and his wife never have to sit and hear their child ask to be fixed, or get notes written or hear their son say their two choices are to run away or die because he knows he’s a hassle and is different and can’t control himself.  Hell, I envy the fact that there are TWO of them at home being able to deal with their everyday reality.

I see people having conversations with children younger than mine and I envy them that.  In fact, it HURTS.  I still can’t have a conversation with my child. He’s 9 years old.  Sure, he’s verbal, very much so.  But he can’t carry on a conversation. Hell, 80% of the time you can’t even figure out what the heck he’s saying!  We both often get so frustrated we end up crying and upset and completely give up.  He can’t communicate well enough.

For those who want to sit on your little high horse and go “well why doesn’t he learn” or “why don’t you teach him?” Let me ask you something:  does your 1 year old child ask for a cup simply because you will them to?  Does your 6 month old walk simply because you tell him he needs to figure it out?  No.  No they don’t.  Life doesn’t work that way.  Years of speech therapy, behavioral therapy, and just plain therapy have not been effective in some areas (and we are ALWAYS trying new approaches).

My other peeve are the people who tell me, “I don’t know how you do it. I could never do it.”  Please.  I’m no saint.  I’m just a mom.  Doing what anyone would do for their child.  I do what I can the best that I can.  I’ve endured years of BSCs, TSSs, and therapists invading my home in addition to psychologists and neurologists with no end in sight.  I’m not perfect.  I yell at him for things when I know he can’t help what he’s doing.  I curse.  I cry.  Getting him ready in the morning or even just for a trip to the store is a nightmare...

I’m sure there are times when I could engage him more, do more.  But so many days I am just so exhausted that I just want to sit.  So he goes, left to his own means.  He may spend a little too much time on the computer.  He may be left to completely destroy my room/his room/the living room while I zone out staring off into space, just looking for even just 10 minutes of peace.  My day is so full of “Mom! Babble...” “Mom! Babble...” “Mom! Babble....” that even 2 minutes of silence is absolute heaven.

And yes, I look forward to bedtime every night.  The only time of day when I can actually get anything done and be somewhat productive.  People joke about their pets or their toddlers interrupting them while in the bathroom on the rare occasion it actually happens.  Guess what.  That is my reality.  That is my every day.  I can not go to the bathroom or shower without seeing the bright bubbly face of my son through the door or shower curtain (he hasn’t figured out modesty yet).

Let’s not forget that when he is at school/daycare my anxious wait or nervous checks at caller ID when the phone rings, just waiting for that phone call or written behavior report of what he did “wrong” that day.  His reactions and responses just don’t fit in the typical world.  It’s heartbreaking.  He doesn’t know how to respond.  He just reacts.  Often, it does get him into trouble.  The worst part is, he tries so hard...  So hard... To be good.  To control himself.  At least his peers are understanding and forgiving...

To make it better, we are venturing into the world of adolescence.  Yep, puberty.  So we are not only getting into the smell to go with the refusal of bathing, but the sassy back talks and lip that would rival a 16 year old girl.  At least once a day he threatens me.  At least.  He is also getting increasingly violent.  Choking, hitting, biting, sucker punching....  Hormones are a wonderful thing.  Let’s throw Autism, ADHD and all its fun and impulsivity, and the beginnings of puberty in one bucket and shake it up.

That’s a gift from God?

In the end all I’m left to do is cuddle with him every night (and randomly throughout the day), talk with him, and tell him how much I love him and how proud I am of him, always reminding him that it’s the behavior I don’t like not him. (With lots of hugs and kisses.)

Then take a deep breath in preparation for tomorrow.

Tuesday, July 3, 2012

Holy crap, I got it!

             So I came across the possibility that I may be able to get a handicapped parking permit for my son on one of the blogs I follow: Autism Daddy - Handicap Permit.  I was skeptical at first but I got all the required signatures and sent it off.  I got the placard in the mail yesterday!  There are two boxes that apply to some in the Autism community:
1.       "cannot walk without the use of, or assistance from, a brace, cane, crutch, another person,  prosthetic device, wheelchair or other assistive device."
2.       "is severely limited in his or her ability to walk due to an arthritic, neurological or orthopedic condition."
                Well if anyone has ever watched me cross a parking lot with my son then you’ve noticed the white knuckled death grip I have on his arm.  Due to his tendency to dart off and run away as well as his total disregard to the concept of safety, parking lots are a huge issue.  I will say, if given the choice between walking ½ a mile to the store or taking a handicap spot with him, I much prefer the handicap spot.  Now I wouldn’t use it all the time.  Usually where we go there tends to be decent parking spots available.  But it’s nice to have for those instances where it really will make a difference.
                He definitely qualifies as unable to walk without the assistance of another person because he does need to be held on to for his own safety.  Also, Autism is a neurological disorder.  He fits the criteria and I am so thankful that such a thing is possible.  He is far too impulsive and years of therapy on safety just aren’t breaking the surface still.  He runs into parking lots, opens the door while the car is still moving, unbuckles himself on the highway...  And that’s just road stuff!
                In Pennsylvania the placard is temporary and is only good for 6 months.  After that 6 months is up another one can be issued.  For whatever reason you can’t simply renew it like the permanent ones.  I guess they fail to recognize Autism as a permanent disability....
                I would encourage those in a similar situation to explore this option, even if your child has a different disability than ASD that wouldn’t necessarily stand out as needing this extra help, such as Down Syndrome.  I’m also told we can get to the front of the line in amusement parks by asking about a special wristband when you pay for admittance.  We will have to check that one out too.  Let me know if you have any success!

Friday, June 22, 2012

Things I learned from theater that my son knows naturally:

The first 5, as I'm sure this list will grow.

1. You really can be yourself. We all have our unique and mysterious creative selves.  Usually we keep a lot of who we are hidden from the outside world.  We are so afraid of what society will think that we forget who we really are deep down and therefore do not express ourselves as we should.  Theater provides this outlet for so many of us, in whatever we choose to present it. Autism simply does not have this barrier.  They are who they are without thinking about how they may be perceived.

2. It’s ok if we aren’t perfect. In the real world of life we strive for perfection. After all, if we do not perform our jobs correctly how can we be expected to keep our job? We have to pay our bills on time and get the account numbers correct on the first shot.  We have to follow and obey rules and laws to a T or we will suffer the consequences of those actions.  In theater, there is always room for error. We know that no one is perfect and a line will be missed or rewritten.  We know cues can be late.  We cough, sneeze and stutter when it isn’t in our line description. And really, that is ok, it happens.  Autistics strive to simply do their best.  They try and that is what really counts.  Many are people pleasers, as my son is, and will strive to make sure he can make you happy.  They aren’t putting on an act, they just simply are being what they are, as we should be.

3. Life is about having fun.  In the theater it is fun for everyone.  The cast enjoys their art and love to perform for the people.  The people love to come out and see the variety of shows there are to see.  It is a night full of fun for everyone involved. No pressure or expectations really, just enjoying the moment.  My son is very in the moment and as a result forced me to be.  He just wants to have fun and enjoy his life as it is happening now.  He isn’t concerned about what he can do tomorrow, it isn’t here yet.  He just wants to play, have fun, and hang out with mommy.  Living for the moment, in total truth.

4. Just because we think it is so, doesn’t mean it is.  Impressions don’t mean anything in this business.  We can think that a show will go a certain way or will be about a certain thing (when going to see one) or that a line will get a laugh.  I’ve been in front of audiences who have laughed at the dumbest things that aren’t even remotely funny and those that have been stoic at the times when it really was a hilarious joke or moment.  This will pretty much define any moment when living with someone with Autism.  Just when you think you’ve got it or you finally understand some weird quirk, you discover that you never really were close.

5. Expect the unexpected.  Your opposite drops a line, you get a laugh where one doesn’t belong, someone doesn’t turn off their cell phone, crying babies.... All things that can happen in live theater.  Some are more annoying than others.... But they can happen.  When you walk out on stage you never really know what to expect on any given night.  The same applies to Autism.  I experienced this with potty training. I never thought my son would be potty trained at night.  We walked down the diaper aisle one day, he saw the diapers next to his pull ups, we went home and he decided that night that he was going to wear his underwear and that was that.  I let it go figuring he’d know if he was ready and we’ve never had an accident.  More recently, we were driving through the neighborhood and my shy, semi-verbal, non-social child rolled down the window and started talking to some young girls as I stopped at a stop sign.  You just never know what to expect.

That’s all my tired brain can think of at the moment.  This list will surely be revised as time goes on. :)

Wednesday, June 20, 2012


As I write this I sit sweltering in this lovely summer heat in my room. The temperature in here is a cool 88°F. I was about to go to sleep when I pictured my son laying in his bed, fully clothed, sweating. I moved his fan closer to his face and set it to be still so it would be consistent, not swivel. It made me think of his weird heat related quirks over the years.

As a toddler he would simply run around with a spray bottle and spray himself, and his frogs, in the face to keep cool. He would be in various stages of dress, be it a diaper or a onesie or even dressed completely. This seemed to work out well for him. He slept in a onesie or t-shirt in those days.
Once I graduated college and moved into my townhouse, well, I had ac. So for that year things were pretty smooth sailing and he slept in regular pjs. It was at this time he really began associating different articles of clothing for different occasions... This will come into play later.

When I bought my house things pretty much stayed the same. I did not run the ac unit much as it was pretty ineffective regardless of what I tried with it. Instead we got one of those little 18"x6' pools for him to splash around in. His nightly pj routine remained the same for about a year or two until....
One fateful night he spent the night with grandma and grandpa and noticed grandpa sleeping in his boxers or shorts or something (it's not like I see it). Oh what a great idea! Pjs were out, boxers were in. This may not seem like that big of a deal until you take one minor thing into consideration: on a hot night, if all you have on are boxers and you want to cool off more...? Sigh. So is born the nudist.

Thankfully that did not last horribly long as he got tired of me pinching at his butt cheeks. However, sleeping in his boxers would go to live on through the winter months (electric blankets are wonderful....) and continue through the next year. Any attempts to persuade him otherwise turned into an epic battle so mighty you would think I wanted to ban chicken nuggets for a year. So I chose my battle and let it go. Last year he decided he should wear pjs again once it got cold (thank goodness, who likes to be woken up at 3am by the feel of little ice cold feet in their side?) but I felt for sure the boxers would win out at bedtime as they have in years prior. Especially since he was so adamant that boxers were the only thing that 'men' slept in.


Here we are. My 9 year old sleeping fully dressed. Stubbornly refusing to sleep in his boxers. I can't even get him to at least take off his shirt. Or sleep in just shorts, no boxers. And no, trying to sneak his shirt off won't work either. Have you ever tried to pull clothing off a 70lbs, 46in tall, light sleeping monkey?

Funny thing is, he'll wake up in the morning, strip to his boxers, put on his robe, and go downstairs. After all, you can't wear clothes under your robe, and robes are for mornings.

Sunday, June 17, 2012

What Makes a Dad, "Dad"?

Warning! This is a hot issue for me.

What makes a dad a dad? My own father hasn't been much of one throughout my life. Really he hasn't been one at all. Instead, the man I call 'dad' is really my stepdad (confusing many). Why? Because he was what a dad should be, caring, loving, supportive, and often just simply there. So far my son is lacking even that although we have many supportive male figures in his life, including my dad, my step brother, three brother in laws, and now, my fiance.  I guess they are close enough. But it raises the question, is Father's Day for single moms too?

I think so. After all, I am everything. I do it all. For most of the last 9 years I've had no one to turn to and have take over for me. And I have never been able to say 'go talk to your father'. He doesn't exist. He never wanted to really and my son's diagnosis put the plug on that one. I can't say my son has missed much. It would seem there isn't anything worth missing after that particular spectacle (for another day). So in the end, I have always been the comforter, disciplinarian, coach, cook, chauffeur, medic, etc, etc, etc. That is of course, in addition to working full time and going to school.  It's like I have 3 full time jobs.

Then of course I have to deal with the confusion of a child who has realized recently that he doesn't have a dad. Heck, he's a bit confused on what a dad is! He hadn't noticed it until another child from school mentioned something really cool he was doing over the weekend with just his dad. My mother and I had a heck of a time convincing him that he was well loved and cared for and also had plenty of men in his life who loved him just the same.  It is quite a challenge when you struggle over and over again to soothe him when he's crying over how he isn't loved because he doesn't have a daddy who loves him. He seems to follow it now, but every so often asks.  It breaks my heart.

I know the day will come when he realizes that the man I'm married to (soon!!) isn't really his dad. Then he will surely ask me about his real dad with whom I've had no contact with since that awful fateful day 7 years ago. I have no idea how to answer him. "Sorry son, but your father wanted nothing to do with you to begin with and since you're Autistic that was the nail in the coffin for him." ??? Yipes... There just is no easy answer to that. 

This is why I am so amazed by women who just can't handle their one child in a two parent household.  I know of a few.  They work part time (if at all), send their child(ren) to daycare, then call their husband to come home from work early because the hour they have the (typical) kids alone is just too much for them.  Really????  Thank you for reminding me of just who shouldn't reproduce!

A friend of mine marveled at that not too long ago.  He said he sees women like that and just can't help but shake his head because it doesn't make sense.  Then he looks at people like me who (as he put it) would have loved to at some point had someone that they could have had around to help, even just for a little while.  Someone they could turn to and say 'just take him/her for 5 minutes so I can breathe' at any given point.

He's right. I would have loved that on the nights when I was up literally all night with a wailing toddler who couldn't understand me any better than I could understand him when I had class at 8 am and 3 papers to write.  I would have loved that when he was literally bouncing off the furniture from couch to table to chair to bookshelf to desk for hours on end while I tried to get him down before he seriously injured himself.  I would have loved that when rescuing yet another cat from yet another trap he had set up for them.  I would have loved that when returning from a trip outside of the house to the grocery store or park or wherever where I was constantly holding him tightly and on edge because of his tendency to elope.  I would have loved that when we were at a relative or friend's house and I spent all my time chasing or looking for him so I could sit down for 5 minutes and get a chance to say 'hello' to our host.  I would have loved that to have a night out with the girls.  I would have loved that just so I could take a shower, ALONE!

Those married women take so much for granted. Now don't get me wrong, I wouldn't change anything from the last 10 years. All I am saying is that if this woman, who had a child at a young age who was later diagnosed with a disability can handle everything life has tossed out at her (and it has never been easy!) without the support of a husband/father without batting an eye, then what is your excuse/problem?

I guess that's why they only get one day while single moms like me get two.

**Note: I know plenty of moms/stepmoms/dads who do step up to the plate. I am NOT referring to them here. This is in reference to those who are too lazy to lift a finger and realize that when you create life, you create a life-long commitment to that life. Instead, they prefer to let everyone else do it for them. In the cases of those women, what is likely very overworked husbands!

Tuesday, June 12, 2012

Some history....

Hello again.  I figured I'd try and expand upon the history of how our story started.  It will be easier to understand what I am talking about if you know where I am coming from.  Makes sense, no?  It does to me, so let's get started!

My son is currently 9 years old.  He was an accident, but by golly a great one!  Our journey began when he was only 2.  I had returned home after graduating college with my undergrad degree.  I had taken him back with me and raised him while attending classes two hours from everyone I knew back home.  I graduated shortly after his second birthday.  His father plays no role in his life (his response was that my son was "retarded", I hung up the phone and haven't spoken to him in person since.  He can talk to my lawyer.)

I enrolled him in the daycare program at the local YMCA.  It wasn't long before some issues started to crop up.  He was ok for about a month or two then behavior reports started cropping up.  He kept eloping from the room and they'd find him in the hallway (pretty stupid when he has to pass through another room to get to a hallway!), he'd have tantrums, and at one point was emptying out his diaper.  They told me if it continued then they would have to kick him out.  I pretty much said "over my dead body" and told them it must be an issue with their staff.  We had NO issues at the daycare center we were at previously and so no concerning behavior.  I even had previously complained about finding dry bowel movements in his diaper when I picked him up. Yes. DRY.  We continued to have this fight for another week or two until I got angry enough that I wrote a letter to the director of the YMCA's in my county.  Apparently he wasn't so amused.  Anyway, an investigation was conducted and people got fired for improper care of the children and the behavior write ups were destroyed.  I wasn't the only one complaining, I was just the loudest.  A couple months after that he was moved into a new room.  The lady in this room was much older and had been at the Y for decades.  After a couple of weeks she approached me and said she thought he might be slightly Autistic.  We discussed it and I allowed the Y to have our home school district evaluate him.  By this time he was 3 years old.

So the school came in and did their tests and whatever else it is that they do with the young'uns.  They weren't able to place him as Autistic or Asperger's.  He was obviously high functioning but his social skills were non-existent.  They decided on a watch and see approach and gave the diagnosis of PDD-NOS.  They also started him with the Early Intervention program with the IU.  (This move was instrumental in getting the verbal child I have today!)  By the time he was 4 they had officially diagnosed him as Autistic.  Over the next year I went from a child who would make noise to a child who finally said "mom", "I love you", and I started having conversations with (he was only using 2-3 word sentences).

The next couple of years were rather busy and intensive.  We started receiving Wraparound services through the Achievement Center complete with many hours of TSS involvement.  We started with just the TSS at the daycare center and eventually the school and later moved to having the TSS work with him at home.  Unless you've been through this process you can't imagine what it is like.  We had to work on things that we take for granted.  How to bathe, wash our hands, make a sandwich.  We also had to work on how to ask for something, how sentences go together, sequencing, how to be polite, act appropriately.... Oh the list just goes on!  I'll tell you what, you name it, and we had to teach him it!  My entire life was devoted to teaching him these skills. Literally.  There was no going out to dinner, hanging out with friends, or relaxing on the couch.  It CONSUMES your life.  The only thing we have been completely unable to get him to comprehend is safety.  He can tell you something is a bad idea (like jumping off a pile of couch cushions) but when it comes to application.... Forget it.  Eventually... I can't give up yet!

Today he is very verbal and can communicate very well.  Gone are the days of sign language and mass confusion.  He is a lot more social although not always appropriate.  He used to be entirely placed in Autistic support but has now moved to being mostly mainstreamed for his content areas and specials.  It's amazing to look at him and see how far we've come in such a short time.  I can't stress how important it is to get help for these kids early on.  Had I sat there in denial for even a second I doubt we could have gotten this far.  I didn't grieve or try to find blame.  I just hit the ground running and asked where to go from here.  I was thrilled to know what I was up against.

My biggest pet peeve from people is pity.  That usually comes from those who are ignorant about what ASD even is, but unfortunately not always.  I don't resent my life or my child.  I enjoy every second of it and he truly is the greatest blessing in my life.  Frankly, your pity doesn't make my life any easier.  Yeah sure, maybe my life is hard.  But let's remember that I only have him so I don't know anything else.  And even if I had another child, would that truly be a fair comparison?  What two children are alike?  We live an incredibly enriched life that has no shortage of love or happiness or support.  He is also quite a little comedian so my life is also never dull!!  Anyone who meets him can't help falling in love.  Not that I blame them.  He totally rocks!

Until next time.

Some Reasons Why Autistics Rock!

 I came across this Top 10 list and it got me rather excited.  All of this stuff is SO true!  I have a few comments I would like to make and I will make them below and give you the chance to read through this without my Autism mom opinion.
Top 10 Terrific Traits of Autistic People

If you're sick of hearing about all the "deficits" challenging people on the autism spectrum, join the club. But for every down side to autism, there seems to be a positive -- an unusual trait that rarely appears among the "typical" community, but shines out among autistic folk. These pluses are well worth celebrating.

1. Autistic People Rarely Lie

We all claim to value the truth, but almost all of us tell little white lies. All, that is, except people on the autism spectrum. To them, truth is truth -- and a good word from a person on the spectrum is the real deal.

2. People on the Autism Spectrum Live in the Moment

How often do typical people fail to notice what's in front of their eyes because they're distracted by social cues or random chitchat? People on the autism spectrum truly attend to the sensory input that surrounds them. Many have achieved the ideal of mindfulness.

3. People with Autism Rarely Judge Others

Who's fatter? Richer? Smarter? For people on the autism spectrum, these distinctions hold much less importance than for typical folks. In fact, people on the spectrum often see through such surface appearances to discover the real person.

4. Autistic People are Passionate

Of course, not all autistic people are alike. But many are truly passionate about the things, ideas and people in their lives. How many "typical" people can say the same?

5. People with Autism Are Not Tied to Social Expectations

If you've ever bought a car, played a game or joined a club to fit in, you know how hard it is to be true to yourself. But for people with autism, social expectations can be honestly irrelevant. What matters is true liking, interest and passion -- not keeping up with the Joneses.

6. People with Autism Have Terrific Memories

How often do typical people forget directions, or fail to take note of colors, names, and other details? People on the autism spectrum are often much more tuned in to details. They may have a much better memory than their typical peers for all kind of critical details.

7. Autistic People Are Less Materialistic

Of course, this is not universally true -- but in general, people with autism are far less concerned with outward appearance than their typical peers. As a result, they worry less about brand names, hairstyles and other expensive but unimportant externals than most people do.

8. Autistic People Play Fewer Head Games

Who was that woman, and why were you looking at her? I know I TOLD you I didn't mind if you went out, but why did you believe me? Most autistic people don't play games like these -- and they assume that you won't either. It's a refreshing and wonderful change from the Peyton Place emotional roller coaster that mars too many typical relationships!

9. Autistic People Have Fewer Hidden Agendas

Most of the time, if a person on the autism spectrum tells you what he wants -- he is telling you what he wants. No need to beat around the bush, second guess, and hope you're reading between the lines!

10. People with Autism Open New Doors for Neurotypicals

For some of us neurotypicals, having an autistic person in our lives has had a profound positive impact on our perceptions, beliefs and expectations. For me, at least, being the mom of a son on the autism spectrum has released me from a lifetime of "should" -- and offered me a new world of "is."

- Lisa Jo Rudy
Are you ready for my thoughts??? :)

1. Autistic People Rarely Lie

I'm wasn't sure they were really capable of lying for a long time.  We often tell little white lies and big flapping whoppers at times.  Autistics don't.  They will tell you like it is and move on.  It's like their blood is running with a truth serum.  The truth really is the truth and they tell it like it is. Unless it's part of a story.  Which my son LOVES to make up. :)  But even then, he can straight up tell you the truth when you ask him for it.

2. People on the Autism Spectrum Live in the Moment

Before having my son I never had time to notice the apple trees blooming at my mom's house.  I just went about my life not noticing the little things that can make it so grand.  I remember many years ago a dad of a little girl who had Down Syndrome made a comment to me that she stops to smell every flower, feel every rock, and watch every bird fly by and how he never really appreciated life until he had her.  I didn't understand it at 18.  But now, more than 10 years later I fully understand exactly what he's talking about.  There is no worry about tomorrow or even 10 minutes from now.  It's all about being in your own presence and enjoying life as it is, right now, and not missing anything.

3. People with Autism Rarely Judge Others

This is very true.  While my son does have a thing for the girls who are a bit more on the cute side, he doesn't ignore anyone based on how they look, the color of their skin, their disability (or lack thereof), or even how fat/thing/big/little they are.  Not even their age matters.  To quote the Whos, to my son "A person's a person no matter how small" (or big or purple or tall etc.....)

4. Autistic People are Passionate

My son is passionate about everything.  He is loyal to a fault and loves the people in his life more than I've seen married couples show love for each other.  He is passionate about his activities and interests and even the story he just made up in his head.  It's really quite incredible.

5. People with Autism Are Not Tied to Social Expectations

My son is who he is.  He doesn't care what anyone else thinks.  He does what he wants and keeps to whatever interests him regardless of what the "crowd" says.  He is what we all should be, true to himself and his beliefs and feelings.  In this respect Autistics are really a role model for what we should be.  They set such a great example!

6. People with Autism Have Terrific Memories

This one annoys me... But in a good way.  He can remember every twist and turn of any route we take somewhere... The FIRST time we go!  And yes, I hear it when I don't go the "right" way someplace...  He can describe something he saw months ago for only a few minutes with so much detail you would think he was literally just looking at it.  My son doesn't even study for tests (especially not spelling tests) because he can see the word/concept/whatever just once, maybe twice, and it's there, forever plastered in his mind.  He knows the rules and any variations that may occur based on where he is. It's really quite incredible.

7. Autistic People Are Less Materialistic

My son couldn't care less about brand name vs generic, what his hair looks like, what clothes he wears (aside from the feel of them), what toys someone has vs what he has, etc.  Sure he has things he wants, but it's because he sees a use for it himself not because someone else has one.  If he wants something he can give me a good basis of why he thinks he should have it and I guarantee it isn't what typical children say (But so-and-so has one!!!).  He did ask me for a cell phone once, but his reasoning was so that he could call me because he misses me during the day and so that if he gets lost he can call me so I can come get him.  Good reasons (but no he doesn't have one!).

8. Autistic People Play Fewer Head Games

Autistics don't understand generalizations, jokes, sarcasm, or anything analytical in general.  They are usually straight up logical.  The idea of playing head games is just not something they could comprehend.  They don't understand it themselves and don't see why anyone would want to do something so confusing. Refreshing indeed!

9. Autistic People Have Fewer Hidden Agendas

For this one the author couldn't have said it better.  They say straight up what they want.  They don't see the purpose or use of beating around the bush.  Just ask already!

10. People with Autism Open New Doors for Neurotypicals

He has definitely impacted my life in a positive way.  I have stopped to notice things in the moment and tend to take things a little more slowly.  It's hard to explain how much the typical person can miss without even realizing they are doing so.  My son has to stop at everything to investigate it.  A 10 minute trip with him could easily take an hour, even if it's just to the grocery store!  I have definitely shifted to a more "in the moment" approach to life and just try to enjoy life one day at a time, one moment at a time.  There is just so much here to see, touch, experience and enjoy that I would hate to miss any of it.  Any glimpse I can get into his world is worth more to me than anything I could be given in life.

After all, he is the greatest gift I could have been given.

Until next time.

Sunday, June 10, 2012

Saran Wrap? Monkey? Same thing...

Lately my son has been super clingy. I don't mean constantly being around or talking to me or just plain being underfoot. I mean clingy.... As in he crawls into bed with us in the morning and wraps himself around me like he's an octopus. He has to always be touching me. Today in church he kept grabbing at and moving my arm to situate it exactly how he wanted to be hugged. He will also literally hang off my neck like a monkey and sit nose to nose with me, often rubbing his cheek on mine. We are talking constant, continuous contact.  Like if he isn't touching me, I may just vanish into thin air.

It drives me nuts. Anyone who wants to believe the stereotype of how Autistics don't know how to be or can't be affectionate need to spend only 5 minutes peeking into my world with my son to have that completely blown out of the water for them. I have met many on the spectrum. I have yet to see one who does not show any affection in some way. They show it, but the average person may not see it. It could be they show it in a non-traditional way. Those who are non- or semi-verbal often do.

As much as I love his ability to show me how much he loves me and his desire to tell me how much (often), I can't wait for this phase to pass.  I'm ok with the couple times a day hugs and "I love yous" but this stuff is extreme right now!  Just imagine walking around or trying to move but you can't because someone is constantly holding one of your hands/arms back and won't let go or is hugging you and won't get off of you and you can't move much.  That's what it's like.  I may as well have my hands tied behind my back.

The older he gets the harder it gets.  He just doesn't fit in my lap anymore.  When he was small it was fairly easy to just pick him up and continue with whatever it is I needed to do.  At this point he's a 4 1/2 foot, 70lbs child.  The option just isn't there anymore.  Then again, while I may not be able to move or do anything, it sure is nice to have him try and curl up in my lap!  It wards off the day when he becomes "too cool for mom" right? Right?  :)

Autistics aren't affectionate or loving.... Pah!

Top Ten Things a Guy Should Know Before Dating an Autism Mom

I stumbled across this one day and wanted to flash it across a couple of email addresses I know.  Mostly one in particular as I'm pretty sure he didn't quite get it.  My reality is very different than what many expect.  Mostly because they are ill informed and don't realize the amount of time and effort that goes into each day.
  1. Be patient… My children and I are worth it.
  2. Be understanding… I may have to cancel at the last minute.
  3. Be thoughtful… If I did cancel, offer to come over for movie night and bring take out that is kid approved.
  4. Sometimes I have a short fuse… Remember what I deal with everyday.
  5. My children come first…. Deal with it.
  6. Somethings in my normal everyday life might be more than you can handle… if that’s the case say so from the beginning.
  7. Being a mom is a full-time job. Being the mom of a kid with special needs is like having two full-time jobs. Being a single mom is like having three.
  8. Never say ‘I love you’ unless you mean it. We don’t have time for games.
  9. Be kind… That shouldn’t need an explanation.
  10. My house is always a mess.. It’s my reality.
These were submitted to the Facebook page: Single Mothers who have Children with Autism by Jennifer Hodgdon..
What other readers added:
  • Complete exhaustion will sometimes happen.
  • Must always be alert and be able to run fast after child, love a headbutt as much as a hug from child, tolerate high-pitched screams, don’t make promises you don’t intend to keep and always realize that kids WILL always come first.
  • Take time to educate yourself about Autism.
  • We are not an easy package deal, but so worth it!  Also, you might just learn about the truly important things in life that others take for granted. ♥

Saturday, June 9, 2012

One of many like this that I will share....

These are rather funny, mostly because they are so true!

You know you have a child with autism when...

1. You get kicked out of church in the middle of mass because of random words being yelled by your child.
2. You find elation in achievements other parents take for granted.
3. When every TV and computer is playing "Thomas the train" all day...EVERYDAY!!!!
4. When hearing the words "Mommy I Love you," after 5 long years makes you sob like a baby.
5. You gain an incredible amount of patience - more than you ever thought was possible.
6. When your child draws a smiley face (that you weren't aware they could even do) on your wall IN MARKER and your friends can't understand why you’re not mad but instead celebrating the same way you did when they took their first steps.
7. You separate your laundry into lights, darks and purples because purple is her favorite color.
8. You're singing Christmas songs in June.
9. When you have grey hair way too soon!!!
10. You have a neat 'mess' (arranged toys, etc.) all over the floor that you have to step over!
11. They talk about themselves in the 3rd person and can say the same sentence 5 different times (that is totally unrelated to the situation) and you know the 5 different meanings even though the sentence is the same. Make sense? Lol!!!
12. When your child is out in the yard with his underwear on and you are thankful he at least has something on!
13. Your child tells you his brain is different because 'God" told him in his heart.
14. They can quote whole movies but can't tell you when they are sick.
15. When the holes in your walls were caused by your child's head during meltdowns.
16. When Billy Mays has been dead for a few years now and he can tell you all the ordering info, including phone numbers for the awesome auger, mighty putty, oxy clean and every product the man ever sold.
17. She relates people's houses with the snacks that they initially gave her and now she expects it when we visit or a meltdown will happen.
18. When your child has a Jekyll and Hyde personality and can switch in an instant!
19. You make the same breakfast every day.
20. When you know the rest of your life is going to be rougher than expected, but still wouldn’t change the child for the world (unless it would make THEIR life easier) cause the simple things bring you more joy than most parents will ever understand...
21. When your 8 yr. old can explain to you how to use a trajectory angle to make the ball go right where you want it to but he can't tie his shoes.
22. Your daughter at 16 yrs old is trying to teach her baby dolls to write hand over hand when even she can't write her own name.
23. You are standing in a puddle with your child to keep it company before it dries up and "dies."
24. When you thank the lord every day that you no longer have to change diapers.
25. When you tell your son you love him and he can't tell you back through voice but all you have to do is look into his big beautiful eyes and see the love shining through them♥
26. When you are in the grocery store and he is having an episode and some old bat looks at her husband and says "If people can't control their children better than that they shouldn't even have them" loud enough to be heard over his tantrum, and you walk up to her slide your shoes off, bend down pick them up, and them to her and say "When you have walked a mile in them get back with me!" and turn around and leave barefoot with a cart full of groceries still sitting in the isle.
27. When your friends and family want a 24 hr. notice even for a 5 minute visit to their home so they can put away ANYTHING that can be broken.
28. When you turn your back for 5 seconds to load the dishwasher and find your 3 year old with poo all over him, your computer, the desk, floor, etc.!
29. When you are the only parent not sitting down and visiting on the playground. You are chasing your child around not taking your eyes off of them for one second.
30. When you experience separation anxiety whenever their away from you because you know how much they need you.
31. When your ex-in-laws won't take both of your kids over the weekend because the autistic one is "just too hard". Wimps.
32. When feel the need to celebrate big because he just added a new item to his very short and selective “only food he will eat” list.
33. When to get a yes or no answer to a yes or no question, you have to end every yes or no question with "yes or no".
34. When using an expression like, "we'll just play it by ear", becomes a 30 minute exercise explaining what that really means, where the saying came from, and a realization of how silly some of the everyday expression we use really do sound.
35. When you think he is speaking gibberish at age three only to realize it is actually Klingon he is quoting from the first three minutes of a star trek movie of which that is the only three minutes he ever watches.
36. When you know more about Pokémon than you can remember from American history class in school.
37. When they refuse to eat the toast, as u cut it wrong or it’s on the wrong color plate.
38. When your son says school is boring, they don't even teach u how to kill dinosaurs!! And you smile and say I wish I lived in your world just for a little while and tears come to your eyes when the reply is come on in mum!!
39. When the child has better knowledge than you about what happen Wednesday 15 November 2006 at 10.25 am.
40. When you find every shoe in the house lined up from biggest to smallest.
41. When people look at you and wonder why you're so excited that your 4.5 year old just said a three word sentence!
42. When you relate to all of these LOL!!!

This list was compiled from responses given on the FaceBook page of Single Mothers who have Children with Autism.


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So I'm finally here....

Everyone keeps telling me how I should write my story.  I guess mostly because I have such a great story and so much great advice to give.  I also see it like it is and am not afraid to say it.  Tell me it can't be done, then watch me prove you wrong!  I tend to get very upset by the ignorance surrounding this disability and that has fueled some to prod me into writing.  So, here I am.

To me, my child is typical.  To everyone else, he has Autism.  It's a label they place.  He's just a child.  Really.  He is high functioning and mildly Autistic.  We are currently in a stage of regression where some of his adapted learned behaviors have been forgotten and we need to reteach.  Anyone with a child on the spectrum knows how common this is and what a challenge it can be.  My son for the most part throws a lot of the common misconceptions/stereotypes about Autistics out the window.  For example, he is incredibly loving and affectionate!  Just because you saw Rainman does NOT mean you know Autistics.  You saw one person on the SPECTRUM.  Trust me, every child or adult on the spectrum is in a different place.  Kind of like snowflakes really, no two are exactly the same.

Like previously stated, he is high functioning.  What does that mean? Well, he can communicate, take care of himself, and is mainstreamed most of the time at school.  (By the way, he's currently 9).  Like all Autistics he has those little things that he excels in, for him it's the computer.  He was doing things on the computer when he was 4 that I didn't know you could do!  He loves video games as much as the next kid and is very active.  In his case he shows high potential for being able to overcome his Autism symptoms and live on his own as an adult.  There is no cure, but we can help them learn to function in today's crazy society...

He was diagnosed PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified) when he was 3.  The psychologist then spent the next year trying to determine if he was Autistic or Asperger's due to his high functioning ability but his low social skills.  After that year passed they placed him into the Autism category due to low social functioning.  I was doing backflips.  I finally had a place to start!  I knew what I was up against!  (The whole grieving and denial thing is for wimps!)

I have come to appreciate many things that so many parents take for granted.  My son was semi-verbal until he was 4 1/2.  What that means is that he would make noise, read words, and recite movies, but he couldn't actually talk.  There were no conversations.  There were no calls for "mom".  There were no "I love yous".  They didn't exist.  Every milestone in life gets celebrated like a high school graduation.  You are just so happy to have finally achieved the goal!  And yes, I do remember every location, situation, feeling, air temperature, etc of every one of those milestones.  The first time I heard "mom".  Our first conversation. And the first "I love you".

Sure, he's a lot of work (aren't all kids?) but I wouldn't change him for anything.  He keeps me on my toes.  He's my little comedian and life cannot possibly be dull with him around!  I take joy in every day we spend here.  Sure it isn't easy, but God decided he needed to place another Autistic child on this planet, and I think He sure hit it on the nail when He gave him to me.

Until next time.