Tag Archive: frustrations with Aspergers


Bang Head Here

That stone wall would be the South Carolina Public School System District One. Today we went for our first IEP meeting with Monkey Boy’s school. And yes FINALLY Monkey Boy has an official diagnosis of Asperger’s Syndrome/Autism Spectrum Disorder!!! (Insert cheer!)

Now first let me just say that the district people themselves have been very helpful. They gave him one of the most comprehensive evaluations I’ve ever seen, sending 3 people out independently to observe him in his classroom setting without telling him who they were and why they were there. They met with me, my wife, they recorded everything we said as evidenced in the summaries they provided us.

The DISTRICT people were very sympathetic and helpful. The autism specialist and the district psychologist were WONDERFUL….the SCHOOL staff…especially the principal, let’s just say I had to put my hand on my wife several times to make sure she didn’t attack them. Several times people at that table almost got an award winning book thrown at their heads!! (Let me say that the Occupational Therapist and the Resource Teacher were very sympathetic and really seemed interested in helping Monkey Boy, it was the two higher up representatives which were completely dead set against us).

The gist of it is that Monkey Boy is struggling in areas of organization, completing tasks, and the largest battle…he can’t seem to bring his daily agenda and homework sheets home on a regular basis, and when he does and we sign the damn things, he loses them or leaves them home or we the parents forgot to sign something and they (the school/his two teachers) take away his recess and ice cream privledges as punishment.

Instead he has to sit inside and complete missing homework, even if he did it, brought it in and the only thing missing is our signature! This has happened often enough that they have destroyed his desire to go to school. The kid comes comes home, flings his book bag across the room and screams in frustration EVERY DAY!!! Which of course prompts my wife to email/call me at work about it, which completely destroys any hope of me getting anything done.

Today, we went armed with a 7 page document of possible accommodations to discuss with them. They however wanted to only implement the things they wanted to implement. They adamantly refused to even consider removing the taking away of recess as a punishment. Saying, “Well we have to teach every child the same and we don’t want him using his disability as a  crutch, and contribute to creating uselessness/helplessness in him. He has to be accountable the same as every other child.”

Which of course beggars the question “WHY THE F*** WERE WE THERE FOR IN THE FIRST PLACE ANYWAY? Isn’t the whole purpose of the IEP that measures be put into place because he CAN’T function like everyone else? They insisted that his organizational skills can be improved on, without addressing WHY he has organizational challenges…basically they don’t want to acknowledge that his disability is DISABLING….and the source of his disorganization!

They all want to say that we understand he has Asperger’s…but don’t want to acknowledge that his difficulties are stemming from it.  Most likely because then they’ll have to actually do something about it. They did put some things in action which give me hope for some measure of success, but they barely touched the tip of the iceberg. Needless to say that  my wife will begin the research for an advocate tomorrow.

They don’t know the fight they just started. I only hope we can survive long enough to win it. We are also looking at  putting Monkey Boy into a school which actually has an autism/Asperger’s class in it. We are reluctant to pull him out in the middle of the school year, but we may end up having to.

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This is an ongoing frustration for me being an NT dad & husband. I’m kind of old school in a lot of ways. Dealing with my kids is definitely something that I keep jumping back to my old ways of thinking, (before I found out my wife and kids were Aspie’s.) With.

It frustrates me having to explain everything I say to them. I’ve never liked having to explain my reasoning and motives for every little thing. Especially to kids. I mean I’m the dad right? Shouldn’t “Because I said so” be sufficient reason for a 9 year old?

And shouldn’t  “because I want to”, or “because that’s the way I’ve always done it” or “just because” be enough reason for why I do things? I’m a grown man after all…(my teenaged six pack of a stomach giving way to a man sized 3 liter of a stomach is proof enough of that right?)

But these are things I daily have to remind myself of. My kids and my wife want to and need to understand reasons and motives. They can’t just grin and go with it, because without understanding, they feel lost and sometimes adrift. And though we all feel that way sometimes, my wife and kids really are effected very differently when they feel like that.
This may seem strange to other NT’s and sometimes it may feel like Aspie’s are control freaks…but it’s not really true.  Sometimes it’s just that since their reasoning isn’t the same as ours, they feel extremely disconnected from us because they can’t understand why we’re doing what we’re doing and why.

This causes feelings of panic, anxiety, loneliness and isolation. And confusion! My kid can’t understand WHY he gets  recess taken away when he forgets to have us sign a paper. “But I did my homework assignments !” But getting that paper signed was an assignment too…”But it’s not LISTED as an assignment!” (Even my wife has problems with that one).

So every day I have to take a deep breath, even grit my teeth when necessary…and remember…it’s not insolence…it’s not defiance…it’s just them being them. ..the way they are…and though I would spare them the difficulties they are going to have of I could..I wouldn’t change them for anything.

This JUST now happened!!!

We let Aspie Teen sleep in since I was home today. My wife usually gets him up the same time she get’s up to bring Monkey Boy and Tantrum Tot to school/daycare, which by that time I’m already at work. I wake him up and tell him to come down and take his Adderall first thing, since we don’t like him taking it too late In the day.

He comes downstairs, walks into the dining room/office where she is typing away and says “Why is Dad home?” She flips out, complaining about his coming in the room and yelling first thing in the morning. He didn’t yell really , what really happened is that he interrupted her and she can’t take interruptions so she lashes out angrily when interrupted. However, even though this has happened to him a million and one times already, he still can’t process that she doesn’t like being disturbed/interrupted and she can’t control her reactions when she is interrupted.

THEN he asks if he can drink his Monster Energy Drink with his Adderall. Wife flips out, “I told you before…NO…you can’t take those two together, it’s not good for you, your heart gets palpatations NO…he goes in the kitchen in his sullen way and takes his medicine. She goes into our room to start getting ready for her doctor’s appointment and he goes and sits on the sofa and puts his finger in his mouth looking all the world like a dopey kid who’s just been given a sedative. (He DID just wake up after all). I told him take your finger out of your mouth before I take a picture and post it online! He responds by saying I’m biting on my finger to wake me up. (HOW that makes ANY sense is beyond me.)

Wife comes flying out of the bedroom (our master bedroom is on the ground floor), “Don’t give me that…I’m not going to let you sleep in when Daddy’s home anymore! You never act like this when I wake you up first thing in the morning when he’s at work”…to which he replies “I wish you would, it’s easier for me to get up earlier than when I sleep in. ”

Now my wife heard a “tone” in that….which apparently to her was disrespectful. In her head, she’s doing a nice thing letting him sleep in. And when she points it out to him, he answers with indifference to her niceness making him seem ungrateful. (which happens with him quite a bit). However, HE can’t control his tones any more than SHE can accurately interpret tonal values and inflections due to their Aspie-ness.

So she says to me, “Tell him why I’m upset…to which I reply “I don’t know why you’re upset…why are you?” I then have to play mediator and point out the following: (now I’m admitting here that I was very sarcastic and WAY over exaggerated the delivery of the following), “YOU are upset because you think he’s being ungrateful to you being nice. HE can’t help the fact that he doesn’t understand what is you mean, any more than HE can tell that his tone makes him come across ungrateful anymore than YOU can accurately detect his tone because HE’s an Aspie and YOU’RE an Aspie and neither of you can help what you’re doing! Now neither one of you talk to me for a half an hour!!

By the end of the tirade, we were all laughing which helped diffuse the frustrations which were rapidly mounting! All this Aspie-ness is going to be the end of me one day I swear!

The kid who knows who Stanley Kubrick is: Dreaming Big.

I was reading blogs, trying to find other blogs on Autism etc. to follow when I came across this. This post challenged me…and I’m afraid to say…shamed me.

A few weeks ago, Aspie Teen came to me begging to look into some websites and programs he could download so he could create anime based music videos. Unfortunately, he started asking when Aspie Baby was in full havoc wreaking mode,  Aspie Mom was in full  I’ve had enough mode, Aspie Monkey Boy was in full swing from the chandelier mode and I was in full Dear God I’m going to hurt someone mode…so I told him I’d do it later. Now Aspie Teen is the type that later means ask every 5 minutes until you do it. (A trait I’m positive he inherits from his mother).

I completely shut him down. I looked at the system requirements, and what would be involved. Unfortunately at this time my wife’s computer was the only one who could handle it and no way is Aspie Teen using moms computer to do this, as all Aspie Teen seems to need is four seconds with a pc until 4000 viruses are downloaded. One of his prevelant special interests is anime. Which isn’t so much of a problem once you’ve limited what sites he can go to watch them and strictly lay down ground rules for what is appropriate since there are some sick perverted anime’s out there! Luckily Aspie Teen is very trustworthy and obedient if not exasperating.

I told him that we couldn’t do it, that we couldn’t risk the damage to mom’s pc which is where she does her school work, blogging and writing from. I explained the system requirements and that source videos for him to use would open up her pc to risk of infection by viruses and hackers. His answer was simple. Buy him his own pc to work from. One big enough and with strong enough firewalls enabled to allow him to proceed unhindered. Great…my kid thinks I’m made out of money.

This was the absolute wrong answer he could have given at that time. Money in our house is always tight. This was shortly after Christmas too which meant I was REALLY behind the ball at the moment. His answer was a good solution, just not a practical one. Unfortunately, he could not understand the money issue, nor was I in a very patient mode to explain it. Nor do I like explaining this issue to my kids. For me, not having the money to meet my family’s needs is a personal failure. As such, I don’t like having to talk about it, let alone explain it.  Now we do ok…we are no where near as poor as I was growing up. The rest of my brothers and sisters think I’m rich (which I asssure you is not the case), because I own a home and two cars. My kids have toys and tech…food in the house (which could be a blog all by itself). But rich we are not.

At any rate, he persisted to the point where I shut him down cold. Enough. Dad said no. Sorry but that’s it. (paraphrased). I saw the light in his eye dim, his head hang low and his shoulders slump as he walked away. Never to mention it again. I failed. Big time. Was my reasoning sound…yes…was my my stance justified…completely…was I the best communicator and messenger in this instance. Big Fat No. I destroyed his enthusiasm and probably his faith in me to meet his needs. I felt about 2 inches tall and wished someone could step on me and end my guilt and misery.

So when I read this blog, I was shamed. Inspired to do better, but shamed. I applaud this mom’s ability to encourage her son. I hope to one day be able to do as good as she did. So I encourage all you NT’s out there with kids/wifes etc. on the spectrum. Hold your tongue. Take a deep breath. Hug them….and then calmly give your answer. Get outside your comfort zone and forget you ever heard the phrase “because I said so”. Be firm…but remember the possible damage you can do with a word. Good luck.

My Aspie Diner

I originally wrote this post about a week ago, however it was on my kindle fire, while laying in bed half dead. I thought that it had saved as a draft but sadly it didn’t.

My house at dinner time resembles a diner at the dinner rush. My wife and I will eat one dish, Aspie Monkey Boy is in his pizza mode which he’s been on for almost a year now, which means he will only eat pizza like items such as frozen pizza, pepperoni hot pockets, spaghetti with red sauce etc.

Aspie Teen will eat most of what we eat, but frequently will make special requests, or when told what we’re having will request a different item as well. Which quite honestly drives me insane to the point where I want to throw down the pans and walk out of the kitchen, because usually he announces he won’t eat what I’m cooking until I’m halfway through preparing it.

Aspie Baby, who my wife lovingly refers to as Tantrum Tot, is in a hunger strike mode where he won’t eat anything for days other than his milk bottle and Flintstone one a days chewable vitamins, and then all of a sudden will devour and consume the strangest things I’ve ever seen a two year old eat. i.e last might he inhaled fries pork ribs (WTH?) And then if its one of the rare times we actually sit at the
table together to eat, he will climb out of his chair, and sit directly on the table in front of her.

Keep in mind that usually (not always, usually) I’m coming home after working and heading to the kitchen to start dinner because my wife is exhausted from her day of either driving her mother around, and/or watching Aspie Baby and Aspie Teen, while trying to write her book, and home school Aspie Teen.

So I come home and try to do as much as possible to help alleviate her stress which oft times doesn’t reduce too much stress from her because I’ll end up yelling or scolding the kids for being to loud while mommy is trying to relax, or for being the messy monsters that they are expecting me to come home and clean up after them.

So when I go to the kitchen to cook, I feel like there should be one of those spinning wheels with the orders the waitresses clip on it so I can read the special orders I’ll have to make just to get through dinner.

In the immortal words of Flo from Mel’s Diner on the old sitcom Alice, (yes I know I’m dating myself here), sometimes I want to tell the little darlings to”kiss my grits”.

Do they do this intentionally? Probably not…they get stuck in routines. Routines help them cope, even if they don’t realize it, with the constant changing stimuli going on in the world around them.

Its their way of finding/permanence in an ever fluctuating environment.

While it creates more work for their mother and I, its usually much much easier than the contest of wills it would take to get them to eat one meal and take the old fashioned “You will eat what’s put in front of  you or you won’t get up until it’s gone” line. Believe me I know.

I guess the biggest thing I’ve learned in dealing with my Aspie family is that tradition is usually going to be tossed out the window. This is hard for me, being the old school Puerto Rican that I am. But the main thing to remember is that I’m not doing it for me, I’m helping them.

With all that I have to correct them on, and teach them, is dinner really the battle I want to choose to make my stand on?

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