Where Do You Find The Energy?

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Where do you find the energy to go on?

My beautiful, intelligent, charming daughter is autistic. I don't know the precise nature of it yet as she is still being assessed. The specialist has confirmed that she is definately autistic but they are having trouble pinpointing her exact place on the autistic spectrum. The problem being that she is extremely clever and is an expert at appearing normal.

And that has been at the heart of the problem for a long, long time.

I am a single parent and have raised my daughter alone. I knew she was different right from the day she was born. The way she was didn't become a problem though until she was about 3. I have been trying to get help and support for both of us ever since. She is now 16 and only 4 months ago did I finally hear the words from a specialist in autism/Aspergers in girls 'you were right'. At which point I burst into tears in front of him.

You see, I'm exhausted. 16 years of not knowing what the problem was. 16 years of dealing with it alone. 16 years of being told that there was nothing wrong other than my abilities as a parent. Years and years of having to deal with her being punished by teachers for things she cannot help. Years of being told that it was her fault that she was being bullied at school.

I thought things would be easier now that we knew. But they're not. Every single day there is a problem at school that leads to meltdowns and screaming when she gets home. I'm so tired with it. I'm so tired with having to tell them over and over again. I'm sure that now they just switch off when I start. But they just don't get it. They know that she is autistic but they cannot see it and therefore act as if it doesn't exist. The teachers get angry and exasperated with her because of how she is. BUT SHE CAN'T HELP IT! I think, they think she is just being delibrately difficult.

For example, she gets in trouble for not doing her homework. But she doesn't understand what she is supposed to be doing. They get really cross because they think this is nonsense as all the other kids know what is expected and non of them are as clever or articulate as she is. But I have sat down with her night after night to try and help her with it and it is very obvious to me that she really doesn't get what the teacher wants. To her the instructions are unclear. Sometimes I can figure out what they want from what she tells me and I can then translate that in to her language. Then off she goes and produces excellent work. But sometimes she is so confused about it, that I can't get enough information out of her to help her.

So how do you keep going, when all your efforts amount to nothing?

Welcome MotherKnowsBest,

This is all very new for you and you are still processing it all. This is an excellent site to learn about ASD's and you can use that knowledge to advocate for your daughter. My son has had an IEP since kindergarten, but as late as 5th grade the school didn't understand that a meltdown that occurred did so because they didn't protect him against bullies and the self injury that occurred was due to the incorrect way they were trying to handle his meltdown. I had a meeting at the school and brought a list of recommendations on handling meltdowns from the doctor's office. I would learn as much as you can, in your daughter's case particularly about the cognitive difficulties your daughter has and educate her school. You are doing them a favor. I lent the principal a book about meltdowns-she kept it, misunderstanding me but I was glad to let her keep it if it helps them understand what is going on and why. The people here would be glad to answer any specific questions you have. Again, welcome.

Welcome to WrongPlanet!

Your abilities as a mother have been proved, and now the face of your challenge is changing in the sense that your continued success in the overall sense is dependent upon your daughter's participation and cooperation.

I would not worry too greatly about your daughter's academic performance since she will likely care about that herself. What I would do is to try to help her learn to see trouble approaching and how to thwart it ... and that is where she is going to have to become willing to accept help and direction from the folks who have finally seen though her mask and have diagnosed her.

Continue serving as your daughter's advocate even (or especially) when teachers do not understand. When there are questions about homework assignments, write those questions down and present them to the teachers or a counselor or whoever else at the school, then put your own "Mom approved" mark at the top of the work your daughter turns in even if you know it is not exactly what a teacher might have been expecting. In other words, challenge the teachers to help you understand how they think and what they want so you can translate and interpret such things for your daughter. Your daughter might accept your help along that line or she might reject it, but either way she will discover more of her own need to be self-aware and to learn how to deal with the kinds of challenges she will be facing for the remainder of her life.

I am so sorry to hear that you have had such a rough road of it. You'll go on because you have to, you love your daughter and if you don't fight for her, no one will. Mama bears protect their cubs And you are a very strong mamma bear, it just may not feel that way at the moment. And that is OK, too. Give yourself a break. Allow yourself to feel frustrated. Cry. Pound out a few pillows. Scream. If there is any way at all, arrange a weekend of "me" time.

And then go back to the fight.

For the homework issue, I suggest putting it in the IEP that all homework instructions must be written out, step by step, by the teacher. This will give you something to review with your daughter, and work through together. Most ASD kids seem to be behind a few years in their abilities to handle school responsibilities. Which means that a 16 year old will need the level of back up normally given to a middle schooler, or maybe even a 4th grader, depending on the level of impairment, when it comes to responsibility and organizational expectations. When you look at it that way, it becomes easier to see what has to be done, and you realize it isn't a life sentence but a timing gap. Some skills may never fully develop, but that isn't where you are at yet. Right now, its the timing gap, and I've found that treating it as such helps us all stay on track and "get through it." As we figure out which skills will never fully develop (for my son, its writing), we get busy on work-a-rounds. And so on. How much of that you are already doing, I don't know.

ANYWAY, we are here for you. The easiest way for us to help you will be if you post specific concerns as you identify them. You've made a huge step. You got a name for what is going on. It wasn't an instant solution, but it has set you on the better path. I hope you can believe in it.

Well everything said above is right on the mark but that mostly what you get here real pratical ways of dealing with things. So all thats left for me to say is welcome

Hello MotherKnowsBest,

If your daughter is only 16, try to get helps from wherever you can.

For instance, could you find a student in your neighborhood to help her with her homework, once or twice a week?
A student young enough to remember what she's expected to do even she didn't write it down correctly while at school.

When she's screaming and everything, do you have to stay with her or is she more at ease to do it all by herself?

And also, does she have other ways to decompress when she gets home?

Current biggest issue is the school bus. She is missing it regularly now. Why? Because she won't have it that she needs to be at the stop in plenty of time. If the bus comes at 7.30 and it takes 2 minutes to get there, there is no reason to leave the house until 7.28. In her mind at least. I have done everything I can think of, short of physically throwing her out of the house, to try and get her to leave earlier but she just won't have it.

So at 7.28 she leaves for school. At 7.31 the front door slams and she is raging, ordering me to drive her to school. Going absolutely crazy when I refuse. She can walk to a different stop and catch another bus but she won't do the 10 minute walk to get there.

It's a full screaming meltdown pretty much every morning. She eventually storms off to catch the other bus and promptly forgets about the whole thing. And I'm left feeling miserable for the rest of the day.

oh MotherKnowsBest, I SO get how you are feeling - especially your last post -- where your daughter goes off to the 2nd bus stop and forgets about the whole blowup, but you're left feeling awful for the rest of the day. That's so frustrating! And I'm sure that practically everybody here has been through THE EXACT SAME SITUATION.

Instructions for assignments has turned out to be our problem as well (my son is in 8th grade). It's turned out to be even more of a problem lately because my son's meds are all messed up because he's growing so fast. FOR THE FIRST TIME, my son's english teacher wrote out a VERY DETAILED explanation of an assignment yesterday. It was like magic. It made the whole project so much easier -- he was able to do the whole thing practically on his own, which is monumental. I have to admit, I'm mystified by this need to have instructions spelled out, but it very obviously is a need that could be put into an IEP.

Good luck. I know how hard this is for you.

Does your school have a way to email the child's teachers (many schools now have a "blackboard" online that contains syllabi and class materials)? Do any of your child's teachers maintain web sights or post assignments online? Would it be possible for you to ask the teachers to email you instructions about the assignments?

There's a blog called "It's Not All Mary Poppins" that has some very sound thoughts and advice on dealing with tantrums. The woman who writes the blog might also have some good book recommendations on that issue.

I do. Repeatedly. It's reached the point where even I'm sick of hearing myself raise the issue with them again. Things improve for a few days and then revert back to normal. The problem is that no matter how many times I explain the problem to them, they just don't get it. They understand what I am saying: but they just don't see it. In the same way the medical professionals couldn't see it for nearly 16 years.

Perhaps I am expecting too much. Perhaps I need to adopt a 'sod it' attitude. I did this with PE and it has saved my sanity. PE lessons were her worst nightmare and led to the worst kind of behaviour, including self harm. I tried and tried to get them to do things in a way she could cope with but they were pretty rubbish. In the end I just said enough was enough and told her not to go to those lessons anymore and sod the consequences. The school completely freaked (and still are) but I don't care. They had their chance and they blew it. Daughter is extremely happy with this outcome. (See Mother really does Know Best )

Thanks I shall have a read.

A bunch of different thougths.

1) Bridery. Every morning that she leaves the house by 7:25 she earns a reward.

2) Just drive her, every day, so there the fight is gone. Although, that could be replaced by one on the time you need to leave for driving ...
3) Find out if there is some reason she objects so strongly to having to stand waiting for the bus. Is there an issue there that can be solved or worked on?




I've never heard that expression, but I like the concept. Still, you have to be very careful about when you apply it, to be sure that both you and your daughter are truly prepared to deal with whatever falls out. You are definitely a mama bear, aren't you? Love it

"I do. Repeatedly. It's reached the point where even I'm sick of hearing myself raise the issue with them again. Things improve for a few days and then revert back to normal. The problem is that no matter how many times I explain the problem to them, they just don't get it. They understand what I am saying: but they just don't see it. In the same way the medical professionals couldn't see it for nearly 16 years."

You are not asking too much. It is the teacher's job to make the assignment understandable to all styles and levels of learning present in the class. If the school is not reasonable with filling this request then you may be within your rights (depending on district policy) to sue them for services. It think it's called filing for something. See if the school or the board of education has a parent advocate, that is a parent who voluteers at the school to explain district policy and fight for parent rights.

"Perhaps I am expecting too much. Perhaps I need to adopt a 'sod it' attitude. I did this with PE and it has saved my sanity. PE lessons were her worst nightmare and led to the worst kind of behaviour, including self harm. I tried and tried to get them to do things in a way she could cope with but they were pretty rubbish. In the end I just said enough was enough and told her not to go to those lessons anymore and sod the consequences."

I did the same thing when I was in high school, except I made if official by finding a sympathetic social worker who let me sit in her office and wrote an excuse not to the gym teacher. If the PE was causing her to self harm, doesn't the school have some sort of counselor she could see in lieu of gym?

Sorry about the quotes, I'm not very internet savvy yet.