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!