People Need to Check Their Reality

Being a parent is not pretty.  Being a Special Needs parent is REALLY not pretty.  I always dreamed of being one of those super moms with the beautiful, immaculate home, perfectly dressed and groomed children, the perfect dog...You know, some real June Cleaver shit. 

A friend of mine recently had a post published on Mamapedia.  It was a harmless post about letting her son watch a show she THOUGHT would be okay, but turned out was NOT okay.  Let's face it people.  Shit happens.  We make mistakes.  We learn from them.  We move on.  However, some people out there in Lalaland have taken it upon themselves to bash her for admitting to having made this mistake.  THAT is not okay.  Not okay at all.  As far as I'm concerned, they are all a bunch of hypocrites.

So in support of my dear friend (one I actually have MET, not just a cyber buddy!), here is a list of some of the shit that goes on in MY house that makes me the Worst.Parent.Ever (probably).

• Katie was not potty trained until she was nearly 4 years old.
• At two, she called people, "fuckers" because that word is used quite a bit around my house.
• Teeth brushing is, often times, optional.
• On the weekends, SHOWERS are optional, as well as getting out of pajamas.
• There are days, I allow her to sit and play DSi.  All.Day.Long.
• I allow her to freely surf YouTube.
• There have been nights, I have been so tired, and I KNOW she won't let me sleep because she'll be in my room every 45 minutes, that I have used her left over cough syrup with codeine to drug her into submission.
• We taught her to navigate NetFlix and the Xbox so she can watch movies and play games in the mornings so we can sleep "just a little bit longer."
• I have her signed up for dance class just so I can get her to move and exercise some, because otherwise, she wouldn't and I don't have the energy or the give a shit to make her.
• I still dress my child.  Not because she can't, but rather because it's faster if I do it.
• I don't like to or know HOW to actually get down and play with my child.  As a result, she doesn't know how to play either.
• I couldn't tell you the last time we sat down to a meal, as a family, at an actual table, without the TV on, to enjoy each other's company.
• I make different meals for her than for my husband and I because it's just easier.
• I take her to McDonald's at LEAST once a week.
• We let her watch "Walking Dead" with us...and she likes it.
• I've allowed her to have ice cream for dinner.  (OK, it was actually frozen yogurt, so that's not AS bad amiright?  Please tell me I'm right.)
• I couldn't tell you the last time I actually cleaned my house.

All that being said, here's where I know I'm getting it right.  And as far as I'm concerned (and that's all that really matters) these are the most important things there are.

• We tell her we love her every day.
• We set boundaries and stick to them.
• We tell her she is beautiful, because she is.
• We don't hide things from her.  She has autism.  She knows it.  She understands what that means.  She is learning to accept that.
• We don't allow her to use her autism as an excuse.
• We give lots of hugs, snuggles, and kisses.
• We do things together as a family, even if it's just a trip to the grocery store.
• We read to her every night.

So yeah, my parenting may not be ideal, but I *think* I'm getting it right where it counts.  And?  Show me the perfect parent, and I'll show you a liar.  There IS no perfect parent.

What is a Friend? Hell if I Know.

In the back of my mind, and due to my husband being somewhat anti-social, I have always blamed attributed Katie's autism to my husband's side of the family.  It COULDN'T be from ME.  I'm fucking perfect! 

As I look at the issues my daughter is facing and will face as she grows older, I find myself trying to figure out how to explain things to her in a way she might possibly understand.  The friendship thing always seems to be on the forefront.  How do you explain to someone, let alone an 8 year old child, what a friend is and how to be one, let alone a GOOD one?

This has lead me to examine my OWN relationships with people.  Guess what I discovered.  I SUCK at relationships.  I have a hard time communicating my wants, needs, expectations.  I tend to allow people to walk on me.  I tend to bottle things up until I explode and lash out at people for no good reason.  They may not even be the object of my rage.  I am not the best listener.  When I feel someone is mad at me and is yelling (even when in all actuality, they aren't) I tend to completely shut down and cry.  Then I get mad at myself for crying and "appearing" weak.  Then I lash out again.

The best?  I have an amazing knack for putting my foot in my mouth.  I speak without thinking about the consequences of my words.  I say things to hurt people because I am hurting.  I say things, attempting to be funny, and, well, they just aren't.  Usually, they are inappropriate in some way shape or form.

As a result, I tend not to talk to people.  I don't go out with friends, because in all honesty, I don't really have many.  To have friends, would require I speak to people, and that would require I attempt to use some judgement as to not put my foot in my mouth and piss people off.  I find that to be completely exhausting.

My friend Lexi has blogged about the motherhood box of shame. in a few of her blog posts.  I can so relate to this bitch of a box.  I hate it (but I love Lexi so hard).  I feel like I need to spend a large amount of time in this box more often than not, but recently because I have discovered I cannot teach my daughter how to be a good friend, because I'm not sure how this whole friend thing works, which, in turn, makes me wonder who to blame attribute Katie's autism to.  Not that it matters really anyway.

Maybe I AM Making a Difference

I had a moment with my mother the other day.  One of those moments that absolutely knocks you over.  One that says, "She FINALLY gets it!"  You know, THAT moment.

Two weeks ago, I received a very vague note from Katie's teacher on a Friday that stated she had bitten herself on two different occasions and hit two children with her lunch box that week.  Every child in Katie's class receives a note home on Fridays, so that, in and of itself, was not that unusual.  What WAS unusual was that this was the first I'd heard about the hitting and the biting.  And I got it in note form.  There was no information regarding the circumstances of these events, just a note saying she had done it.  Apparently, the teacher didn't find this bit of information significant enough to call me about it when it happened.

I called the school, spoke with Katie's SPED teacher, and had a team meeting set up for the next Monday morning at 8:30.  I then sent a rather scathing e-mail to Katie's classroom teacher letting her know how lacking the communication had been between us and essentially that I was livid I had not been informed sooner about Katie's incident.

That weekend, I prepared myself for the upcoming meeting.  Katie has shown signs of self-injurious behavior before, but nothing like THIS.  Never anything that could cause real harm like biting herself.  However, because she does it so infrequently, I needed to arm myself with strategies to prevent it from happening again.  This meant lots of new acronyms for me to learn.  My vocabulary was now full of FBA, SIB, and BIP.  I had to know, going into this meeting, what I wanted to see happen.  I HAD to sound like I knew what the Hell I was talking about.  If I floundered, even a little, they'd eat me alive.

The meeting arrived, and I was nervous as Hell.  I refuse to allow myself to cry in front of these people.  Not when my daughter's well being is at stake.  I refuse to show any kind of weakness.

The meeting consisted of the classroom teacher, the SPED teacher, and the school principal (former counselor).  I started off the meeting saying how upset I was that I had to find out through Katie's weekly report that these incident's had occurred.  I told them I knew how difficult I was to get a hold of because I sleep during the day, but they could have called and left a message or even sent me an e-mail.  I told them Katie's behavior has TANKED this year and I didn't understand why and she was not capable of telling me.  I rattled off all my new acronyms and demanded that these things be addressed and that a new, albeit, temporary, behavior plan be put in place until some of the assessments I wanted done had been completed.  I had even designed a behavior plan I thought would work and I shared it with them.

I promise I'm getting to where my mom comes into play...

Then, Katie's classroom teacher took the lead and stated she had never gotten a message, like the one I sent her, from a parent before.  My first thought when she said this was, "Either you're a fucking liar, or you're the luckiest bitch on the planet."  I have honestly had issues with this woman down playing all of Katie's issues all year, but I've kept my mouth shut because it hadn't mattered...until now.  She then tried to blow off not contacting me about the biting by saying things were just so crazy with state assessments going on.

Then it happened.  The principal spoke up while we were discussing some of Katie's many issues and said it.  She actually said, "Well, ALL kids do that!  What she's doing is NORMAL."  That did it.  I was done with the conversation.  I completely shut down when that was said.  I turned my attention to Katie's SPED teacher, summarized everything with her and allowed the meeting to end.

Probably the WORST thing you can ever say to a parent of a child with special needs is that "All Kids do That."  In fact, my friend Jillsmo over at Yeah.  Good Times, has a whole series of guest posts on this subject alone.  I even got to be the second person to guest post for that series (plug, plug plug...).  But I digress.  Saying, "All kids do that..." is a horrible, hurtful thing to say.  Sure, all kids may have issues with their friends, but not all kids have issues with their friends simply because they do not understand social cues or personal space boundaries like kids on the spectrum.  What these people did was downplay my child's struggles, AGAIN.

Here's where my mom comes into this story...

I was relating this story to my mother, who, at one point, was GREAT at telling me how "normal" Katie's behavior was.  When I told her about how they had downplayed Katie by saying that "all kids do that." she looked horrified and said, "I used to tell you that because I didn't understand how different Katie actually is.  I get it now.  I will never tell you that again and I'm sorry I ever did."

And then I died.

I am Autism Aware...Now, More Than Ever

April is Autism Awareness month.  While I think it's great that there is a whole month dedicated to educating people about autism and the complexities it can bring, people need to understand that for a lot of us, this is something we deal with on a daily basis. 

Since Katie is an only child, I hadn't really noticed "the Autism" that much until recently.  I've mentioned that we started watching a little classmate of Katie's before and after school.  We have been doing this for just over a week, and the differences between the two have come out like a slap in the face.

Child A, is very outgoing.  By that I mean LOUD and rambunctious, and into everything, All.The.Time.  I'm not saying this as a bad thing.  It's not.  We're just not used to it at all.  Katie, is quite the opposite.  Mostly because for most of her life at least one of her parents has worked the night shift and sleeps during the day.  She's learned to be quiet out of necessity.  Also, Katie doesn't exactly "play" with her toys.  To her, her toys are more of a decoration.  Things meant to be set around and looked at rather than played with.  Child A, definitely plays with her toys, and therefore, plays with Katie's as well.  While Katie has been a relatively good sport about her toy displays being messed with, I can tell it is starting to get to her.  She spends a huge amount of time arranging her things just so, and Child A comes and "messes it up" in a matter of minutes.

Today, the strain of having her toys messed with, came to a head.  I could hear the girls playing in Katie's room and I heard Katie start to make her whining noise that means she is very upset about something.  I could hear Child A stating over and over again, "Katie, it's okay, don't get mad.  Katie...Katie...Katie!"  I'd had it.  Child A, while not being an only child, has a little sister who is only 2.  She is very used to getting her way and doing things the way she wants to.  Katie, being an only child, is also used to being able to do things the way SHE wants to.  Putting these two together has finally caused a problem.  The hubs and I went into the bedroom to try and solve the problem.  I had already, on several occasions talked to the girls about sharing and playing nice.  I'd talked to them about using their words to explain what they want or don't want.  I'd talked to them about taking turns and understanding that neither of them is the boss and neither of them will get their own way all the time.  I kind of lost it today.  My husband had intentions of simply separating the two for a bit.  I wasn't going to let it go at that.  I, while not exactly yelling, was not exactly quiet about the fact that I was highly annoyed.  I told Katie that the whining does not tell anyone what she needs and that she MUST use her words if she is not happy about something or nothing will ever get fixed.  I told Child A that while she is our guest, and we want her to enjoy her time with us, everything is NOT going to be done her way all the time and that she MUST give Katie the opportunity to do things the way she wants because, after all, they are her toys.  Bottom line?  Play nice or don't play.  I then went with the Hubs's suggestion and separated the two for about five minutes.  Then, after asking if they were ready to play nice, allowed them to play again.  While Child A was still trying to manipulate the course of the play, and Katie, still not effectively using her words, was at least using them in the form of echolalia, I could hear a change in their conversation.  There was more give and take between the two.  Perhaps a lesson was learned?  I'm not holding my breath, but you never know.

Yes, this is Autism Awareness month.  I have been made more aware that my child is Autistic and just how that impacts her social interactions with others.  I am thrilled to death she has a friend but what I really want to do is go and curl up in the corner and cry after finally seeing, first hand, what a struggle social interactions are for her.  Instead, to celebrate, I'm going to get a tattoo on Saturday.  I'll post pictures to prove it happened.  Promise.  In the mean time, since I'm at work and can't, please drink one for Autism Awareness, then drink another for me.  Maybe I'll get good and drunk by proxy.

Drama and More Drama

This last week, I was faced with the fact that my mom is not a superhero.  She had a massive heart attack and after hearing what the doctors had to say, I admit, I'm amazed, and grateful, she's still alive and with us.  her two main arteries in her heart were a horrible mess.  One, was 100% blocked while the other, known as the "widow maker", was 80% blocked.  She was scheduled to have a quintuple bypass.  Long story short, she had the bypass surgery.  They were only able to do four of the five bypasses as one artery was too calcified to reroute.  She was brought out of surgery, flipped off nurses, and we knew she would be okay.  She was sent home four days later.

My 86 year old grandmother (my mom's mother), who is going senile, lives at home with my parents.  Growing up, she was great to my brother and I.  We were her only grandchildren and she humored us probably a lot more than she should have.  She let us get away with murder.  She played with us, taught us piano, talked with us when we needed someone to talk to, and was all around wonderful.  I've heard my mother say, that when she was growing up, my grandmother was not the nicest person.  I always had a very hard time believing this because she was so great to me.  As I've grown up and my grandmother's mind has gone further and further away, her filter has dropped and I'm seeing what my mom has always talked about.  I'm also seeing that she is an insufferable attention whore.  If she's not the center of attention, she feigns some sort of confusion or episode to bring the attention back to her.  This past week, with my mom being sick, this has really reared its' ugly head in a really bad way.  She would say things like, "Is J out of surgery yet?" when we had just seen her and held her hand or, "Who's M?" when I mentioned my husband.  We've been together for 16 years.  I realize that not all of this is an act and that her memory loss must be incredibly frustrating, but her comments are too well placed to all be an act.

Anyway, I digress.  When my mom returned home from the hospital on Tuesday, she came into a house that smelled like urine.  After looking around a bit to find the source, she discovered that my grandmother, who knows exactly what to do with things, had failed to properly dispose of her undergarments as she should and had instead stuffed them into random trashcans all over the house.  Hence the urine smell.  My mom, already exhausted from coming home, confronted my grandmother about it and asked her to dispose of her things properly so the house didn't smell.  My grandmother became irate saying hateful things to my mom.  She told her to send her to a nursing home so that my mom would have to pay for it.  She told her to let her go back to her house and die.  Then, she punched my mom in the arm.

She.Punched.My.Mom.

So, my mom punched her back.

Then she told my grandmother that she would be calling my dad (He had left to go to the grocery store).  Then my grandmother starts apologizing all over the place.  When my dad got home, he laid into my grandmother and told her if she EVER did anything like that again, not only would the police be called, but she would go to a nursing home.  Do not pass Go.  Do not collect $200.00.  End of story.  My grandmother then starts claiming that she never hit my mom.  She DID however remember that my mom hit her...for no reason. 

Because people who have just had bypass surgery often engage in fist fights unprovoked.

All of this brought up some rather unpleasant thoughts for me.  Not only was my mom on the brink of death, the reality of who and what my grandmother is and sadly, is not, slapped me in the face.  Plus, I began thinking about the fact that my mom has told me on numerous occasions, that Katie and my grandmother often get into arguments when Katie goes to spend the weekend with them.  Katie is very rigid in her thoughts and schedule, and my grandmother is very stubborn as well.  What happens if she decides she needs to lash out like that at Katie?  What am I prepared to do if my grandmother hits my daughter?  What are my parents prepared to do?  I told my mom, that I would call the police and have her arrested, but am I really able to do that?  I don't know.  I really hope it doesn't come to that.

I swear, people, I can't make this shit up.

The Words, Sometimes, Just Won't Come Out Right.

Once upon a time, I wrote.  I wrote All.The.Time.  I was pretty darn good at it too.  I would write silly little stories, short children's stories, journal entries, term papers, whatever there was to write, I wrote it.  I even was the one to go to to get things proof read.  I actually made out pretty well in beer and pizza while I was in college on that gig.  The older I get, however, the less I write.  I don't know if it's just because life is so busy that I make excuses to not have time to write, or that all the words I had inside me are gone.  I really hope the latter is not the case.  Writing for me is therapeutic.  At least it used to be, when the words were there.

I think some of my writing issues started when somewhere along the way, someone was reading over a piece I had written.  A piece I was pretty proud of, actually.  The person stopped reading, looked at me, and said, essentially, "So is the kid in this story gay, or retarded, or what?"

I was crushed.  I had written this story shortly after we had gotten the autism diagnosis for Katie.  It was an attempt at a story about kids being different and that being okay.  Apparently, it was not a very good attempt.  I haven't really written since then.  Sure, I blog on occasion, but after reading the blogs that some of my friends have, mine is nothing in comparison.  Plus, I find that the times I want to blog are when the really shitty stuff is happening and I really don't want to be all Debbie Downer all the time.

At the beginning of the year, I told myself and all of you that 2013 was going to be the year of me.  I was going to start doing things to make ME happy.  I have decided that I am going to try and get my voice back in the form of my writing.  It's not a very loud voice, but it was loud enough to get a local library (along with the help of some very snarky friends of mine) to pull down a particularly offensive Facebook posting today.  So maybe, I still have that voice somewhere.  Hopefully, you will share this, encourage me, and help me find it.

Friendships

Third grade can kiss my ass.  This year has been horrible, behavior wise for Katie.  Her behavior has absolutely tanked at home and at school and this is WITH medication.  I can't imagine how bad things would be if we hadn't decided to medicate her.  Recently though, she's been having a rough time even wanting to go to school.  After much prying, begging, pleading, and cajoling, I finally got out of her that she doesn't want to go to school because there is a little girl being mean to her.

Hearing this, and knowing how hard social interactions are for her, I immediately went into Mama Bear mode.  I had to calm myself down a bit actually.  I asked Katie to explain what was going on.  In short, what I found out was that this little girl, let's call her B, is refusing to allow Katie, or anyone for that matter, to play with another little girl, we'll call her A.  Now Katie and A have been friends since Kindergarten.  A has always been a true champion for Katie, sticking up for her, and helping her out.  I adore this girl.  I don't know B from Adam.  I also know that I don't always get the full story from Katie in regards to situations at school.  Mostly because she doesn't understand that her actions impact others, so she leaves out the stuff that she does, and focuses soully on what the other person has done to her, even though it may be a reaction to something she has done.  Being aware of this, I called A's mother.  I was actually shocked and pleasantly surprised when A's mother actually confirmed Katie's story.  A's mother even went so far as to talk to A and call me back so A could tell me her version of things.  A told me that she WANTS to be friends with Katie and that Katie is a nice girl.  I almost wept.

A few days later, I received a phone call from A's mother.  She told me that B is now enrolled in the same daycare as A.  A's mom was really upset about this because she thinks that B is a bad influence and with the girls being in the same daycare, A would never be able to escape B.  She asked if I would be willing to watch A before and after school.  I agreed whole-heartedly.  What an amazing opportunity for Katie!  She will now have a playmate!  What a way for Katie to develop her social skills with someone who already accepts her and likes her for who she is.  I think this is going to be great.