Saturday, March 27, 2010

Insane Asylum pt. Deau

At least two times a week I receive phone calls or e-mails from school just to break up the monotony in my otherwise peaceful day.  Someone is having some kind of melt down or problem.  Lately "K" is obsessing big time over a girl and not paying attention during class, therefore not completing much work.

"C" is angry at everyone, mostly the other annoying students, and is having some kind of issue. He doesn't want to sit in the cafeteria because of the smells.  He can't get along during P.E. because he feels that some student is picking on him.  He is angry at a teacher for "yelling" or being mad at him, or because they won't listen to his side of the story. By the time I pick him up from school, he's ready to explode.  He's spent the entire day avoiding land mines.  He's stepped on a least a couple of them and he's just freakin' exhausted from the whole process.

Neither of them understands why the world doesn't work the way that it should.  The way other people do things, the way they think, the rules are all stupid! "C" is just tired of it all.  He hates the fact that he can't get along with others.  He really wants to...if they would all just start understanding him.  At least he is aware of the differences.  "K" has no clue really.  He knows that he has Aspergers.  He's not angry about it like "C" is. He's not all that interested in being introspective, figuring things out and how to make them better.  His resolutions to his problems don't make any sense, and he doesn't want to listen to, or take to heart the advice of others, i.e. therapists, teachers, parents, friends or even peers.  It's so freakin' frustrating. 

Friday, March 26, 2010

Just an Average Day in the Insane Asylum I Call Home

Home is supposed to be a haven from the storms of life.  According to Oprah, "Your home is supposed to rise up to meet you when you walk through the door." I've tried to make that my reality by decorating with warm, comforting, welcoming colors.  No matter how I try to paint it -my home is the storm, not the haven. 

I confess, I often find myself hiding and trying in little ways to avoid my children, mostly one of them, but sometimes both of them.  My name is called like a gazillion times in any given day.  Mostly by my 14 year old toddler.  "Mom...Mom...Mom I need you. Mom can you come here?" Is there any any wonder why I try to hide or why my evenings are filled with glasses of wine?

School days begin at 6:35 when I wake up from my fantasy life, filled with travel, friends and the occasional handsome guy that I'm making out with.  "Damn -it was just a dream. Or sometimes -thank God it was just a dream. Alan would kill me if I really did that."  Luckily the only affairs I have are in my dreams.   It's funny that they often involve travel.  I'm always in California or somewhere wonderful, and I miss my flight to come home.  Is that because I really don't want to come home?  Hmm...

I get "C" up first since he has to leave for school the earliest.  He gets up with a struggle, but not a fight.  He does what he needs to do to get ready without many, if any prompts.  Now he's 11 -granted I pick out his clothes because he'd wear things that aren't close to matching and that goes against everything within me.  I make him a warm breakfast, because he may or may not eat lunch in the disgusting cafeteria, which smells like too many things.  Then there's the problem of sitting next to peers who eat the disgusting cafeteria food with their mouths open so you can see what they're eating.   It's tragic really.  We're pretty much out the door on our way to school on time, with little incidence. 

I wake the 14 year old toddler up at 7 a.m. giving him time to lay around because it takes him a while to get moving.  I have to hear, "But I'm still tired. I don't want to go to school," at least a dozen times before he leaves.  I've stopped making him breakfast or lunch, because -one, he doesn't appreciate it -two, he lets it get cold before he comes down to eat it and -three, because it's quicker and easier for him to eat cereal after he's wasted so much time procrastinating.  He got a good hot breakfast for the first 13 years of his life and I can count the thank-you's on one hand.

There are constant prompts.  There is consistent chasing and harassing the dog in order to avoid being ready on time. There is also many request for overextended hugs from me -not to express love or affection, but to slow down the process of getting ready, to control and annoy me if only for a few moments.  Daily I say, "You'll get your hug when you're ready and on your way out the door. Leave the dog alone. Have you brushed your teeth? Did you put on deodorant? Let' go! Let's go! The bus will be here in 5 minutes.  The bus has been waiting for 5 minutes. It's inconsiderate to make other people wait for you."

Daily he says, "I don't want to go to school. I hate school! I hate Mrs. F.! I hate Mr. C. or I hate some  obscure student." 

By the time they are both out of the house, I'm ready to shout, "hallelujah" and have a Bailey's and coffee...

And that's just the first hour and a half of my day.

to be continued... 

Tuesday, March 16, 2010

Am I In this Alone?

I have an awesome husband. He is an excellent provider and I know that he loves me and our children with all of his heart.  Just last week, he took a day off and spent it with me.  We went to lunch, followed by a leisurely walk, passed by Tiffany, where I coaxed him to going in to "just look" and I came out with a brand new necklace.  I indulged him afterward by going to a bloody movie, full of violence, which is totally not my cup of tea.  But that's what you do for the man you love.  A few months ago, he totally indulged me by allowing my mom to move in with us, which involves a whole other level of sacrifice.  So far, it's been more of a blessing than anything else.  

When it comes to raising our Asperger's children however, I often feel like I'm on my own --like I'm the only one who gets it.  My husband has this "old school", traditional mentality. But these are not traditional, atypical children.  He sees many of their ASD behaviors as a personal affront to him and/or the rest of the world.  Thus, he wants to discipline them as such, weather or not it works to change any behaviors and often despite the fact that it usually makes matters worse.  He's a guy -so when he sees my son being aggressive, not listening and driving me batty, he wants to step in even more aggressively than my son is behaving, in order to let him know exactly who is the alpha male in the house.  His aggression makes the sons aggression worse.  It certainly doesn't teach him anything. I understand the whole I will protect my family 'by any means neccessary' mentality.  However what the aspie teen and preteen needs is balance and calm when they are out of control.  Yelling or litterally putting them into a corner, will not get them to buy anything that your selling, much less to absorb it into their psyche.  Instead they begin to resent and loose respect for you.

That's all well and good as far as hubby is concerned.  The problem comes in when I want to leave them with dad so that I can have a reprieve, but they want nothing to do with him because, "he's mean".  And that's o.k., I leave them anyway, when I really need a break.  However, that makes my homecoming more stressful.  It can also mean dozens of phone calls while I'm away.  I am actively learning how to ignore these calls or turn the phone off. It's a work in progress...just like the rest of my life.

Granted --he works a full-time, very demanding job.  On top of that, he is a perfectionist, work-aholic.  He gives 150% to his job and he doesn't have a whole lot left over for anything else.  I am a full-time mother.  The kids are my job.  I spend my days, reading and researching Aspergers, taking them to therapists, dealing with teachers, school-psychologists and counselors -advocating for them to have their needs met in the educational setting, and trying to figure out the best way to parent them.  NO ONE else does that. Yet, many people want to have a say on how to discipline them.  That would include of course, their father, my mother who now lives with us, and any relative whom they spend time with.

Yesterday hubby had the day off and son had an appointment scheduled with his therapist. Did hubby get up in time to go to said appointment? NO! Why did I want him to attend, so that we could try to get somewhere on the same page when it comes to dealing with him --so that he could perhaps understand why he does some of the things he does to irritate and annoy us.  When I try to tell hubby anything with regards to what I've read or what professionals say, he thinks I'm just being an overprotective, coddling mother.  It couldn't be that I have any expert knowledge based on what I deal with everyday. "When they go out into the real world -nobody's gonna give a shit that they have Aspergers. I'm trying to prepare them for reality." That's a valid thought process.  But does it help us have peace in our house?

Now we have Nana living with us, who is seriously "old school" and bless her heart, she tries to "get it" but she sees some of their behaviors as just plain, rude, obnoxious and annoying.  They are just that on the surface, but their are underlying reasons why some things just are. She wants to protect her child who is being driven to the nut house and guess who's driving.

I love them with everything within me -and even I loose my patience at times.  I am human.  I just find it hard to listen to the advice of those who have not been educated to understand Aspergers. I guess that's another job for me -to try to educate them along with the rest of the world.

Full-time Job From 6 to 8 a.m.

 It started off as one of those typical, hurried, fighting to get him out the door and on the bus kind of mornings. This meant he walked out the door with out taking his medication.   I realized it almost immediately, but I was too exhausted to deal with it right away.  There have been days where he has gone without it and been fine.  This was not one of those days. I had my coffee, took a shower and got dressed and finally headed over to the school.

As was signing in at the school office, my cell phone rings.  Guess what? It's the school calling.  His teacher tells me that he is having a rough morning and needs to talk to me.  What a surprise. I go to the classroom to find out what's been going on.  My head starts to spin as I listen to the deplorable things my child has said to another student and the expletives he has used towards teachers and staff.  Yes...children with Aspergers have melt-downs in which they go into rage and say things they don't mean.  But the things that were said to his peer seemed just mean spirited -deplorable.  I was embarrassed to say the least.  How could a child of mine be so mean? I am doing everything I possibly can to love support and help him.  Therapists, doctors, counselors, grandparents, teachers, all telling him the same thing.  Yet his thinking is that we are all wrong.  It's the world according to him.  Nothing would to be penetrate line of deranged thinking.  Their was no remorse for how he was treating this other student.  In his mind, the other student was wrong for not being his friend and for being rude to him.  His definition of rudeness by the way, is not speaking to him in the same "friendly" way she speaks to others.

I understand the need for social acceptance is huge. He is reacting to what he feels is just another rejection from a friend.  What I don't understand the belief that you can change or control others. I don't understand because it doesn't make any sense. Irrational thinking has a tendency to do that. You can get them do behave the way you want them to behave, especially by being mean to them.  How could think that would possibly work?

I also have the frustration with the whole medication issue and finding the right combination.  The ambivalent emotion about him having to take anything at the same time knowing it is an absolute necessity.  Worry about the stigma of all of the above -yet knowing that I don't really have a choice.  This day was proof that he needs the medication. However, it did seem that since he started the latest one, he is more irritable and angry.  The most simple requests turn into a fight.  He is totally unreasonable.

When I call the doctor to tell her what I am noticing, she suggests taking him to the full dosage of the new med.  "We are not seeing the result of the full dosage." I'm not a doctor.  I'm a mom and to me this didn't make any sense.  I couldn't bring myself to take her advice.  In fact, I took him off the med all together.  I did increase the dosage on one of the other meds as directed by the doctor.

I also kept him home for a couple of days so that I could observe his reaction to these changes before throwing him back into the fire at school.  He was on a downward spiral and I could only see it getting worse.  He needed a break.

Over the next two days, his demeanor was measurably improved.  We went to see his therapist and for the first time in months and he was able to process through his feelings and actions and came to terms with his error in judgment. Something positive finally soaked through his mind and heart.  There was once again a glimmer of hope.