How to Fight the System

They will tell you that it is your fault and your responsibility.

You conceived and gave birth to your children. You should not have brought them into the world if you could not take care of them.

If you adopted then it may not be your fault but it was still your choice.

You are responsible and no one else.

They leave you with these words while you go home and try to live in a world of crazy instability.



In graduate school we read a research article and said the household with schizophrenic children were more stressful and negative. It went on to imply that this is obviously why these children develop schizophrenia.

This was before my daughter's own scitzoaffective diagnosis. Yet I understood the fatal flaw in their logic. How can you live with crazy day after day and not loose your own mind?

This year I was called out for being a helicopter parent. Then I received an email from the same school administrator telling me that if I was more involved in my daughter's life then my daughter would not be having any problems.

This is my daughter with asperger's. Although asperger's doesn't exist anymore. So she is autistic. Except she cannot be autistic because she is verbal (when she wants to be) and has an IQ of 130 and doesn't belong in the class of other children with behavioral problems.

When I saw my daughter at school she was curled up in a fetal position completely mute. They told me nothing was wrong. When I left the school she screamed that she wanted to come with me. Then she was just putting on a show because I had been there and we were talking about her placement.

At therapy I tell my daughter's therapist, the one with scitzoaffective, that I am not sure how I am suppose to do this anymore. She is 14 and no one else will be alone with her anymore. I tell her therapist I can't do it anymore either but I have to. She tells me I am mom. Yes I am mom but I am also done. There is no solution. There is no help for people her age. I am told to just keep doing what I am doing. Then I go home and my daughter has another fit and I get another bruise.

My son just turned 16. The one with asperger's and ADHD. He had asperger's long before it was no longer real. He is quick to tell everyone that he is now old enough to have a drivers license. He will not get one. I told him he needed to ride a bike first. He won't learn to ride a bike because he is scared. Just the thought that he is old enough to drive is enough to make him an adult in his eyes.

He told me today that he was grown and he can do whatever he wants. He hasn't done his chores in three weeks. He wants to buy a fish tank that is over 25 gallons. He can't even keep his room from being a toxic waste site. I tell him no and he tells me that he is an adult. I tell him that is great at 16 he is old enough to get a job and start paying his own way. I tell him we can sit down and work out his expenses together. He screams at me for another two hours about how he is so big and should get his way. Sometimes he slams his fist into the wall. Sometimes he slams doors. Sometimes he kicks things. At least today it isn't me.

He is failing school. Yet his special education teachers tell me they know and have been working with his teachers. His teachers are using him to tutor other teachers. For months I have been working with him to turn in assignments. I'm working on it. I'm working on it. I'm working on it. And he is still failing out of high school. Yet he is grown and can do whatever he wants.

They want me to resign his IEP to give him a computer to help with his schoolwork. He desperately needs a computer because no one can read his handwriting. He desperately needs a computer because he can not keep track of any paper assignment. He desperately needs a computer so that he may not be failing school. Yet I had to take away his computer from home because he sneaks it into his bedroom and hacks off the parent control software so he can watch porn and people killing each other. He tells me that parental control software is not the solution because he is grown now and can do whatever he wants.

I won't sign the IEP because it says that my son is doing well in school. They tell me that it is from his last renewal and that they will change it when it is time to reevaluate him. I tell them that my daughter is stuck in a classroom with kids who have taught her about porn and cutting and a teacher who doesn't think hell is a cuss word because the district read the line "she seems to be adjusting to middle school well" which was written two weeks after she started middle school. They didn't change it and they denied my daughter a new placement. So I tell him that I will not sign the new IEP until it has been fixed. I am not sure I really want him to have the computer anyway.

I wonder what the researchers would do if they actually had a child with scitzoaffective. I wonder if they would think it was caused by their own parenting techniques after 14 years of the most unbelievable shit happening to them. What would they do when their three year old kept waking up being eaten by spiders. Or when they actually had to take their child off the ceiling, again, because she climbed up the tiny groves in the wall. Would they think it was the parent when they were kicked out of every grocery store because they couldn't enter one without their daughter loosing her mind? Forget finding a babysitter. They quit in under two hours never to be heard from again.

I wonder how long they would last. I have made it 16 years. Last year alone I attended more IEP meetings than my daughter's special education teacher.  I have gone back to school to understand my own children. I have changed jobs so I can get home earlier to be with them. I have been covered from head to toe in bite marks. The damage to our car is identified by not only child but the specific period of meltdowns. We have been kicked out of our home at the same time that my youngest was being restrained in an ER after trashing a YMCA building and assaulting a few police officers.

Tonight I will pray that they will all stay in bed - or at least not bother each other when they inevitably wake up during the night. I will loose myself in a book - someone else's world - and preserve some of my sanity.

Tomorrow I will wake up and we will do it all over again. I will call out the teacher for not giving me an IEP invitation on time and for thinking it is funny to joke about kids getting shot in a classroom. I will hope my 14 year old will not have a meltdown at my work because I no longer have after school care for her. My son will continue to tell me how grown up he is while he refuses to wake up, put on clean clothes, or remember to bring anything that he actually needs to school. All the while I will wonder how I possibly have the strength left to make it through yet another day.

The Autistic Brain During Social Interactions

The other day on Facebook I saw a picture of how people with autism think during a conversation. I think it does a very good job at describing all the thoughts that a person with autism has to contend with while having a conversation.

Am I making eye contact - close enough - do you think they can tell I am looking at their lips and not their eyes?

Wow they are standing way to close. I wish they would back up. Would the be offended if I took a step back?

Is the person mad at me? happy about something? Do I need to be worried, concerned, or neutral?

Remember. . . pay attention to the words.

Concepts like this are constantly going through my head while I engage in a conversation. When you have to consciously think about every thing that you body is suppose to do, even if you know all the 'correct' things to do - you are going to be so busy with one aspect that you forget another aspect.

There is so much information to process that I am usually still processing it after the conversation has happened. Many times I will finally realize that someone wanted me to say something different, or looked at me weird because I did not make eye contact only after the conversation had ended - some times I have this epiphany weeks later.

Yet that is just body language. What this picture does not do as great representing is train of though.

This weekend I had dinner at my families table. I was a bit tired, and am working off an allergic reaction that I got while we were on vacation. Surrounded by family I do not have to try as hard as if I am at work.

Due to recently thinking about Aspie conversations I processed what was coming out of my mouth a bit more. Of course I only realized that what I said had no connection to any prior conversation after it had come out of my mouth.

While my family member was talking I usually wonder quite a bit from their conversation. I get distracted by one aspect that they are saying, link it up to something else, which links up to something else, which links up to something else, and then I say something in 'response' to what they had said - except the link between the original conversation and my response is only in my head. For people who have been around me a lot, they get used to it. For my kids - well we do it to each other all the time. Sometimes my son and I have three or four conversations going at once. When something is important, as the adult, I have to make an effort to make sure we stop and focus on one conversation until we both understand it.

At other times it is not the linkage, but the actual physical environment, which prompts a response from me, which of course is not connected to the conversation. When my shirt rubbed against my hives I thought about them which prompted me to see if they felt better, when I was relieved they were still in their state of healing I told my family members. The fact that nothing said before had any connection to what came out of my mouth did not connect until later.

I think my brain works faster then other people. This is not a yeah I am smarter way. It is a I have to pay attention to everything, and I would not survive if I could not process all that information in enough time to actually respond to it. Which is why I cannot socialize while driving if the environment changes. My kids are always told that I cannot talk while I am driving in rain, or snow, or even on a very crowded freeway. However, if we are driving the same roads home that we do every day then I can handle responding to their lecture on My Little Pony, the Titanic, or all the horrible people at school.

Walking Without A Path

There are times that I think I am walking on a path that God has selected for me. Then I began to make decisions that may be slightly questionable. I justify them in my head. I have determined that this is where God wants to me end up, and I must do certain things to get there.

Eventually, I realize that I am not on a path at all. I am surrounded by nothing.

At times, as a special needs parent, this is enviable. We become lost in our kid's needs, our kid's behaviors, or the fight for our kids. We loose ourselves. Sometimes there seems like there is not any other choice. One day things have begun to calm and I realize I no longer know who I am. I was lost in the last cycle. Then I have to find myself again. I have to start back on my goals, where I am supposed to be.

At other times it is my desperate need to belong which pulls me off my path. Even at 36, a grown woman, I loose my way. I lack the basic ability to understand. I have to pull on my experience as I move forward. I have plenty of experience. However, it does not always help when moving forward. I wake up and found myself lost. I realize people I thought were friends, were just using me all along. I pull back and start again.

I wonder where I would be if I had not found God. For many years I rebelled at his existence. I, like many others, questioned how he could exist and leave me to such a life as I had lived. It took me many years to begin to understand. Now, I hold on to my faith when I make a wrong turn. I orient myself towards God light, then I began to walk in that direction.

Life is tough for everyone. It is tough living with Asperger's. Even as I relish the gifts it gives me, I also know the struggles I have. It is tough raising three children as a single parent. It is tougher that all three of those children have their own special needs. They have their own struggles that I have to navigate. It is up to me to fix it all.

I know I am not strong enough. No person can be. All I can do is pray to God for his strength to help me through. When I navigate by his light then I will never get lost again.