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.

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 not.  He 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.

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!

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. :)

Quirks

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.


Nope.


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.

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!

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.