New here - How do you cope?

Discussion in 'General Parenting' started by sosotired, Mar 30, 2009.

  1. sosotired

    sosotired New Member

    Hi I'm new here and thought I'd ask how others cope when dealing with difficult child's issues?

    difficult child is having a myriad of behavior issues that run the gamut from simply being annoying to inappropriate behavior to complete meltdowns. I spend the majority of my time fighting the school who tend to immediately go into CYA mode when he has any issues (he has a 504 but no IEP).

    I seem to spend the majority of my time "waiting for the other shoe to drop". I never know when I'm going to get a phone call or note home from the school or parents of a neighbor child or God only knows what.

    Do you do everything you can to get your difficult child help (psychiatrist, counseling, medications, etc.) yet simply accept that there will always be issues (with the teacher, with the school, with the police) and resign yourself to deal with what comes?
  2. Jungleland

    Jungleland Welcome to my jungle!

    Hi, welcome!

    Yes, I pretty much am resigned to the fact that our difficult child will have issues her entire life that we will need to help her through.

    The only thing we can do is get her the most appropriate supports possible, help her learn the important life skills and pray each and every day.

    Visit often, there are many of us on here that have walked your walk.

    Hugs of welcome,
  3. Welcome sosotired,

    I'm sorry you had to find us, but I know this will be a good place for you to visit. My son is an Aspie too, and I remember well the many challenges we faced when he was 10.

    I don't know how long ago your son was given his diagnosis, but I can tell you that the passing of time has helped me in acceptance of our situation. I have found the book "The Explosive Child" to be very helpful for our family, even at this late date.
    It has helped me to decide what really matters, when to push, and just how hard. Oh, how I wish that I had read it years ago! I highly recommend it.

    I have also worked hard to educate friends, family, the school , and especially our difficult child's teachers, about AS. It has made a huge difference for us and for difficult child. The bottom line is that our difficult child just doesn't collect a lot of friends and admirers.... LOL He just doesn't care about that sort of thing - while some of us in our family do... That's the piece that I've been letting go (for me) and trying to help difficult child understand how that attitude affects his life. He's starting to "get it", but he's a lot older than your difficult child.

    Hang in there, I do believe that this gets better with time.Our difficult child is maturing, but he is way behind the pack...

    I'm sure others will chime in here....


  4. klmno

    klmno Active Member

    Hello and Welecome! Frankly, the fact that you realize what's going on with school and that you are trying/have tried several things tells me that you have a pretty good grip on things already. How do we cope? I'm not sure I do. LOL! But having support from this board helps a lot. I think we all go thru periods where things are maintained and we're handling things pretty well for a while, then there are other times when it's almost sittting around waiting for everything to just fall apart because we don't know what else to do.

    You'll find a lot of wisom and cyber-friendship here. Feel free to post and give us more detail if you'd like. My son is currently in juvy - I doubt if you can say anything that we haven't heard before.
  5. busywend

    busywend Well-Known Member Staff Member


    Yes, you sort of resign yourself to doing what it takes to make your difficult children life better. Whether that means parenting differently, not going on vacations, not get the child that gets student of the month at school...etc.

    You realize that other things become more important. You appreciate a meltdown free day when other parents are appreciating a good book report. It is not fun, but when you realize that your child needs you to be that support, you accept it faster.

    And you be sure to take care of yourself. Pamper you. Take time for yourself and your own needs, or you get lost.
  6. timer lady

    timer lady Queen of Hearts

    Welcome sosotired. It's true what the others have said ~ you become conditioned to the "chaos" , if you will, of life with a difficult child.

    I had an in home nurse in here today & she asked me the very same question. And I had to respond that stress really was a way of life. It's how I manage the stress that's important. Some days I take it minute my minute or hour by hour. I do my best to find time to do something therapeutic for myself ~ even if it's at 3 in the morning because that's the only time I can find.

    Find that place of calm for yourself & you'll be many steps ahead of the battle. My calm is painting watercolors & attempting to play piano again. I can most times forget the world about me when I'm in the midst of one of those two past times.

    Welcome again ~ as a warrior mum
    :warrior:you'll find a way to survive.:shopping: Shopping is always fun
  7. Kjs

    Kjs Guest

    I fought school tooth and nail in middle school. I bet they all ran when my car pulled in. Due to difficult child's reputation, anything and everything that ever happened at school was difficult child's fault. Punish first....while they investigate. i spent days and days at school fighting for him. Having them investigate FIRST, then punish. Making sure the person that initiated the incident will recieve the same consequence as my son for reacting. Making sure his IEP had specific information. difficult child would get blamed, punished, in school suspension...and I would NOT know. After difficult child started complaining that he was getting in trouble and he didn't do it I asked to see the referral. NONE of them had his statement - which is usually different from the teachers. He had been accused of so many things. Even stealing from a teachers purse. LOL, they called me at home to tell me this. He was HOME sick that day.
    I had the vice principal threaten to call the police and have me removed. Because I was waiting to speak to the principal over an incident I KNOW he didn't do.
    Yes I will fight school every step of the way. If the students are held accountable for their actions the school better be held accountable for theirs!!!
    I did get principal and Special Education person to really take an interest and things changed. Specific IEP information to keep difficult child from exploding. Proactive things.

    One day at a time. And yes, I will do what ever I have to do to keep difficult child safe. To help him survive. He doesn't want to feel this way. He doesn't want to be angry, frustrated, afraid. He cannot control that. How can you punish someone for something they cannot control. So yes. psychiatrist, therapist, medication. People in place if he needs to call someone anytime.
    Lol. I can say this all right now because it has been a better day than the previous. One day at a time.
  8. earthprowler

    earthprowler New Member

    my difficult child also had the reputation at school and don't think the other kids didn't take full advantage of it. the school would take the word over another kid without having seen what supposedly happened and punish difficult child. suspensions, referralls (15 this year alone, one because he passed gas). as far as the IEP, as long as the school follows what they put down to do it's good, ours wasn't as good as the paper it was typed on. difficult child almost 9 now had an IEP, BIP, and FBA (all jokes with this school)along with an advocate and has in the last month been transferred to a different school so he can be in a smaller class so he can have more one on one. i totally understand the days of sitting at work and cringing when the phone rings because you hope it's not the school or a police officer on the other end. calling the psychiatrist to intervine for you, scouring the internet for help to try and get him under control somehow. i know the feeling of sitting and crying over the frustration, the battles with the husband because you're both at your wits end. been there on the stealing end, but it was christmas gifts from under our own tree given to the neighbors. get your IEP to begin with and make sure they stick with it, when what ever plan they come up with stops working, make them come up with something else. it's a constant battle but if the schools aren't going to take the initiative to learn about these issues our kids have we have to make them.

    an excellent place for any information would be wrightslaw. they have everything for you to start learning more.
    Last edited: Mar 31, 2009
  9. lizanne2

    lizanne2 New Member

    Welcome, and I echo lots of what has been said here. And it is true, you can truly aks pretty much anything here. Rest assured someone here has seen it from their child, treacher, school, police, coach, sunday school teacher, mother in law, mom.......

    It is true. difficult child will always need 'extra' guidance. I will say however the difference between 10 and 15 fo rmy difficult child is marked. It has been hard and constant work and has borught ME to the edge. His counsellor has now admitted improvement and I can now breath. So, there will be better and worse days.....but I have found the better are outnumbering the good (at least for a while ;))

    Come back often. And welcome.
  10. artana

    artana New Member

    Hello. I have a Pervasive Developmental Disorder (PDD) child. One thing I don't understand, why doesn't your son have an IEP? It sounds like he needs support at school, maybe help with social skills training, etc. I would also want him fully evaluated, because some Aspies have incredibly high IQs. If you have one of those, it doesn't matter how often you address the behavior you will not see a lot of results because the behavior is based off of boredom. The school needs to give him appropriate challenge levels as well as addressing the behavioral needs.

    As to your question, I am just starting the rollercoaster and my stomach still clenches every time I get a phone call.:( I hope that you find the support you need here on this board.
  11. Marguerite

    Marguerite Active Member

    Welcome to the site, here we have a wealth of experience that you can take advantage of. Feel free to dump on us when you need to, to pick our brains etc. Also feel free to share your experience - you will be surprised at how much you already know. One thing I have really got from this site is a sense of empowerment and confidence in my own decisions and choices, concerning our kids.

    A couple of things to share with you now -

    1) Read the book. It will help. Really. You can change your approach to discipline, to parenting, and instead of clashing you can turn it around. It's an attitude shift, a different way of looking at him and his issues. It can seem counterintuitive but it works so often where 'normal' methods seem to be making things worse. However, all who are dealing with this boy need to be working as a team. Those not on board will be the ones to suffer. We found that ourselves. I read the book and began to implement it immediately. husband of couse could not implement the book as quickly, because only one of us could read it at a time. Also, he was unable to "get into" the book (not his fault) so I boosted my own understanding of the book by explaining it to him and writing out a summary. This has helped husband, plus we workshop it when we need to. However, the lag between me using the book and husband taking it up, meant that difficult child 3 for some time has seen husband as the ogre, as the problem. He is now beginning to see his dad in the right way, but when he rages or they clash, old habits kick in. It's not always easy, especially for sons and fathers. husband tries really hard to not "snap back" to old disciplinarian techniques (which don't work here, and can make things worse) but especially when he's tired or stressed, it's so difficult to concentrate on this. However, it IS worth the effort and does pay off.

    2) Keep a diary. You may think that you will never forget the important stuff, but you do. A lot of the important stuff is the positive stuff, the fun stuff, the interesting stuff - that is often the first stuff we forget, and it should be the last. It's also VERY useful to have a "Communication Book" travelling in the schoolbag going to and from school, as communication between you and the teacher. it should never be the child's responsibility in any way to ensure the book is transported or delivered (it's too important, and to try to use it to "teach him to be responsible" is a HUGE mistake). If you both make short but frequent notes in the book it's amazing how much it can help. The immediacy especially is valuable. it also reduces stress to both teacher and parent, which has to make things better for everybody, including the child. It also allows the teacher to get away at the end of the day and of course we as parents must recognise that having our Aspie kids in the classroom all day is no bed of roses - the after-school classroom steps consult can be avoided if you use the book, and this gives a grateful teacher an earlier escape. Win-win. it's also in writing, which is also very vlauable years later, when you want to see how much progress has been made as well as to check up after the fact on old cases.

    3) Recognise that he WON'T be able to do the same things as his peers at the same age. He will get there eventually, but will take a lot longer to reach some milestones. For example, my difficult child 1 couldn't use the telephone for years, even to ring his best friend to invite him to his birthday party. I had to make the call then hand over the phone. Even at 18, he couldn't make a phone call. A problem, when he was a correspondence student who needed to telephone his teachers to ask for help. I had to stay with him and keep asking, "How is it going? Do you need me to call a teacher for you?"
    However, over time he slowly got the confidence to do this and now can use the phone with moderate ease.
    Toilet training took longer (with both our boys) as did a number of other skills. However, the gifted component found in a lot of Aspies was in stark contrast - difficult child 3 was reading VERY young, including reading sheet music and playing the piano as a pre-schooler. A non-verbal pianist in nappies...

    4) There are going to be long-term social problems, but Aspies CAN learn to find ways to reduce the problems, as long as they are taught in ways they can take on board. They WILL NOT learn social skills purely by being around other kids. This may seem obvious, but we found that a lot of educators simply couldn't understand this and have caused us a lot of grief.

    Something that has been important for us - we have taught our kids that yes, they have a disability, but they needn't have a handicap. It is up to them, to make the best they can of the brain they have been given. They may have difficulties in some areas, but the same brain wiring that is responsible for those difficulties has also brought unexpected gifts. difficult child 1 can't mentally multi-task, he has short-term memory problems. However, he has learnt to compensate by using his long-term memory, so it has deveoped to a prodigious level and he has an amazing wealth of information in his head. He can also narrow doen his concentration to such an intense, fine point that he can shut out all distractions and concentrate to an unbelievably intense level. His sensory integration issues also mean that he is very aware of imperfections in a surface, so in his recent job he was put in charge of sanding furniture because he ensured a perfect finish. He was proud of his workmanship and enjoyed his work in a way a lot of other people might find difficult to understand. He would come home from a hard day's work with a deep sense of satisfaction.

    There are a lot of misconceptions about autism and Asperger's. I recently was talking to a relative who has a 70 year old brother with Asperger's. He commented how his brother "of course" isn't capable of loving his family. I immediately corrected him - I had just met the brother and his intense need to please people, to be loved by them, was obvious to me but only because of my own experience. I pointed out to the relative that in my experience they ARE capable of loving, very much so, but it doesn't always show in ways we recognise. My boys feel emotions very intensely, but it doens't always show on their faces and so other people don't always recognise it. With the 70 year old cousin, in the days when he was a child it WAS believed that people with autism had no feelings, no emotions and couldn't be reached except very peripherally. His parents were told he was retarded and as a result they would have treated him as such, never expected him to be able to do much.

    Even as recently as when difficult child 3 was a toddler, there were research papers being written which stated that autistic people with savant skills weren't really skilled, it was just a freakish semblance of intelligence, in the same way that when a parrot talks we think it amazing and an indication of intelligence in the bird, but in reality the bird is only functioning as a tape recorder and not really using language. I happened to make contyact with a researcher at that time who was working on a new and at the time controversial idea - that you could use the high skills to help the child make progress in the low skill areas.

    Ideas are changing all the time. I have had strong ideas which were at odds with the scientific thinking at the time, but which have been since shown to be right. I have felt vindicated in my parental instincts and this encourages me to express my ideas, to have faith in myself as a parent and to see myself as an expert at least with regard to my own children. Of course I will still listen to professionals, but if their views clash with my own, I will not automatically dump my own ideas, I will discuss it all and weight it all up, keeping an open mind and gonig forward carefully, ready to change direction should things prove to be not what is expected.

    We are at the coalface of parenting our kids, at a time when scientific/medical thinking is changing dramatically, with regard to autism and Asperger's. At such times, we need one another very much, for support, for confidence, for help.


  12. sosotired

    sosotired New Member

    Jungleland, klmno, earthprowler, lizanne2, Thanks for the support. This site has helped tremendously just knowing others are going through the same things.

    1 day at a time, Thanks for the book recommendation. I've heard of the book before and thought I had it at home. I have "The Difficult Child" and "No more meltdowns" which was recommended by his psychiatrist. I'm ordering "The Explosive Child" now!

    Busywend, I can SOOO relate to appreciating a "meltdown free day". I am sick of friends and family saying "there's nothing wrong with him, you're an overreactive mother" then when he acts out, it's due to my poor parenting. I was trying to relate to my mother that he has no understanding of social status, i.e. he thinks he's on the same level as adults and those with authority. She asked when I missed the boat on teaching him respect.

    Timer lady, Thanks for the advice. I wish I had some way to find time for myself. Dad walked out of the picture a few years back, I have no family nearby and few friends considering difficult child's behavior issues. Even running to the grocery store alone is a welcome break however invariably I get a phone call from easy child or difficult child.

    Kjs, this is what I'm dealing with in elementary. I'm constantly on the defense as he's branded the "troublemaker". I can only imagine the vindication in telling the school he was home sick!!

    artana, I have been told ADHD doesn't qualify him for an IEP. The only testing he's been provided by the school is speech and they didn't test any areas I would have expected. I have no idea whether a 504 is ok or not or if I should fight for an IEP. I am loathe to take the school on because I have been blindsided and threateded so many times and don't know the game. This school district is notorious for playing hardball. I struck up a conversation with a few other moms while waiting for difficult child at the psychiatrists office and all of them knew the district and knew it was a constant fight to get anything done. Being a single mom with no support I'm barely keeping my head above water now. Not an acceptable answer but an honest one.

    Marg, Thank you for the words of wisdom. I assume the book you refer to in your post is "The explosive child" mentioned earlier. It's on it's way from Amazon now! I just started the diary this week since we added the new medication to the mix and will keep it updated faithfully. I totally get he's behind his peers however the friends issue is so difficult for him. As soon as he makes a friend, he acts out (either inapporpriate or immature) and they dump him. He sees the other kids his age riding their bikes, going over to each others houses and I can't let him. He has friends to our house so I can supervise but they are very few and far between and almost invariably want nothing to do with him eventually. I have also been working with him on accepting his "disability". I have taken his glasses from him and asked if he could see a sign. He says no. I gave his glasses back and asked if he could see now. He said yes. I asked him if it would be fair if I didn't get the glasses for him. He said of course not, he needs them to see. I explained this is the same with his medication and that although his eyes were different from mine, since I don't wear glasses, they weren't "bad" or "defective", they're just different then mine, just as his brain is wired a little different.
  13. klmno

    klmno Active Member

    My son had the same difficulties in elementary school. Our school district (sd) has the same reputation but I found that letting them intimidate me only kept them intimidating me more and accommodating my son less, keeping the label on him. Things actually started turning around when my son went to middle school and I let the sd know that I had conteacted a Special Education attny.

    I think he's going to need mmore testing to get him on an IEP and the sd is probably not going to do it on their own. Preferably, you could get complete neuropsychological testing done provately, which would be more thorough. But, if you can't afford this, you can asked the school to pay for an Independent evaluation (IEE). Yoou might want to ask about that on the Special Education Forum. Doing it privately is the best though- you would need to check with your insurance company and see if they pay for any of it.
  14. artana

    artana New Member


    They do not do IEPs for ADHD (as I have found out), but they should absolutely do them for Aspegers. I was going by the information you have in your sig about your son. Many of the behaviors you are discussing sound very Aspie to me. These are what I was focusing on. Good luck!
  15. sosotired

    sosotired New Member

    Artana, Thanks for the additional info. The Aspie diagnosis was just within the last two months, provided info to the school via a note from his pediatrician but the psychologist and psychiatrist provided input and agree. I have not approached the school since the diagnosis. He has one year left at this school and the teacher I hope they will consider him for next year is tough but understands the issues and will work with him. His teacher this year has been a Godsend but I think he's on her last nerve. I figure if things don't improve by middle school then I'll put my armor on and go after the IEP. I feel like I'm sticking my head in the sand but not sure I'd survive the fight right now.

    klmno, just checked into insurance in March since the Aspie diagnosis happened in Feb and yep, nueropsych exam is covered at 90% with pre-cert. Psychologist gave me a recommendation of someone who does a very thorough exam nearby. Do I just contact them out of the blue and ask if they'll do this for my son or should he be seeing them regularly?
  16. klmno

    klmno Active Member

    You don't need to see the psychologist regularly. Just contact him/her and make an appointment to discuss testing. That is great that your insurance covers that much- testing can be around $1500-$2000, I think. My son's was done 3 years ago and my insurance covered a smaller portion.

    Anyway, don't worry about the adhd or diagnosis effecting it- kids with adhd can be on an iep- it depends on how the "disability" is effecting the ability to learn or if resulting behavior is effecting the ability for others to learn- or something like that. It isn't that a diagnosis automatically qualifies or disqualifies a kid.

    I'd recommend calling the psychiatric right away- sometimes it can take a few months to get the kid in for the actual tests. Asks what tests they do and how many hours of testing you can expect. It should be at least 4-6 hours or they aren't doing much. If they say they will start with a few then determine what more is needed, that's ok, in my humble opinion. Then, it will probably take a few weeks or so to get the results- ask to make sure that you will get a written report that includes test results and recommended accommodations. He/she should also have an appointment with you to go over the report and any questions you have. As soon as you have this stuff, request, in writing, that the sd have a meeting to evaluate your child for an IEP. People on the Special Education forum can help with that.

    It is preferable to do this before entering middle school if possible.
  17. Marguerite

    Marguerite Active Member

    With friends, we've found that our Aspie kids tended to either have friends who were Aspie, friends who were much younger, friends who were exceptionally bright or a comination of the lot.

    As difficult child 3 got older we found he was increasingly ostracised by kids his own age. He did have kids who he called his friends, but they had increasingly less "meeting point" and when these kids wanted a conversation, they had to go elsewhere for it. They increasingly treated difficult child 3 as a slightly nuisance little brother. The bullies in the class, on the other hand, were just downright horrible and would take full advantage of the teachers being a little afraid of difficult child 3 as well as simply not wanting to take the trouble to understand; if a group of boys all said that difficult child 3 had caused the problem, the teacher would beleive the group of boys even though that same group had a repuation of being a gang and of bullying other kids. We even had a case where difficult child 3 had a witness who backed him up, but later got intimidated. difficult child 3 was told that he must have been mistaken about what happened because kids with autism sometimes misunderstand. I was so angry, because we knew that he was getting bullied but the teacher was taking the soft option. The parents of the bullies were never called about any problems, because the school was afraid of the parents. Much easier to reinvent the truth.

    As far as friends now - difficult child 3 is 15, but his friends who seek him out and come knocking at the door to play (now - this didn't happen for years) are all about 10 years old. We found similar things with difficult child 1 - he was a loner for years while kids ostracised him, then it was younger kids or other Aspie kids who sought him out. His best friend is another Aspie. difficult child 3's current best friend is also high-functioning autistic (not as autistic as difficult child 3) plus ADHD, and 10 years old.
    At school - difficult child 3 is acorrespondence studnet but does have occasional days at school (we're going in tomorrow and the next day for study days). He has a couple of friends there, two classmates who are boyfriend/girlfriend, and the boy used to be very aggressive and was a bit of a bully. Then the boy's mother explained to him that difficult child 3 was NOT behaving oddly to get attention or cause trouble, but really couldn't help being a bit different. After that, this boy will activedly seek out difficult child 3 to greet him and hi-five him each study day, will look aftger him like a little brother. The girl has also learned about difficult child 3 through her boyfriend. Last study day (last week) difficult child 3 & this girl were partnered in a computer class and both worked well together. I'm a little concerned that the girl slipped difficult child 3 a note saying, "I think I have acrush on you," because
    1) difficult child 3 is NOT ready for a girlfriend, he couldn't sustain such a relationship yet; and

    2) she is very much the girlfriend of difficult child 3's friend, it could cause trouble again between the two.

    I suspect she was trying to say how much she valued his help in class. And he IS cute! Just a bit thick when it comes to relationships...

    difficult child 3 grinned, blushed and wasn't sure how to take it. He hasn't talked to me about it, I think I need to talk to him on the way in to school tomorrow, about expectations and also about not poaching your friend's girlfriend.

    The ADHD/Asperger's combo is not uncommon. It just adds to the problems.

    You should be able to get an IEP for your difficult child, it should help a lot. A strong recommendation to include in the IEP, is use of the communication book (I described that previously). Keep the book as informal as you can and try to not react if the teacher has a bad day and vents - it's still best to know if the teacher is finding him frustrating, than for the teacher to hold back in any way on the communication. Sometimes I would write, "He didn't sleep well last night, he could be a bit more tired or inattentive in class today," or the teacher might write, "he did well this morning but after recess he just couldn't settle back to work, I think the construction work two blocks away was distracting him, he said he could feel the vibration of the pile driver, through the floor."
    I did get a teacher at times writing, "I could have cheerfully throttled him today and laughed through the entire process." As long as the teacher also explained why, even that was OK too because I sure know how that feels!

    Mind you, difficult child 3's current placement - the teachers are just perfect. If I could set one up on a pedestal and say, "This is how a teacher should be," then it would send a message around the world that it IS possible, that teachers can be kind, helpful, supportive, tranquil, stimulating, loving and most of all - produce wonderful educational outcomes.

    We also had a lousy school district. They insisted that difficult child 3 HAD to stay in full-time mainstream placement even though it was increasingly obvious that he had all the prerequisites for correspondence - school phobia, school avoidance, and eventually physical illness. It was the physical illlness that finally allowed us to bypass the school district and get the correspondence enrolment happening, because it was the only reason that didn't mean the application had to pass via the district, who had right of veto of the application.
    When difficult child 3 was transferring to high school correspondence the application again had to go past the district, and because his anxiety had now reduced to the point where he was no longer vomiting every day at the mention of school, the district tried to veto the application. I had to get REALLY heavy and threaten them with legal action under the Anti-Discrimination Act (denying difficult child 3 the access to education in a form he could utilise). It wasn't until I began a media campaign to have a Special Education class for high-functioning autistics and Aspies in our district, that they backed down and allowed hie enrolment to go through. They firmly beleived that autistic kids need to be in mainstream in order to learn social skills, but this flies in the face of understanding about autism - these kids DO NOT merely pick up social skills by being around other kids. If they did, then what would be the difference? No, autism has as one of its hallmarks, inappropriate social interaction/difficulty in relating to other people, and this is BECAUSE they don't merely "pick up" these skills. They need to be taught, as you teach a child to knit or to ride a horse.

    If you have a difficult school district, then try to make contact with a support network in your geographic area, so you get to know ahead of time who you will be having trouble with. Other important advice I give you in dealing with a difficult district - take GOOD notes of your interactions/communications. Keep minutes of all phone calls. If you can, try to remember exactly what the other person said and put it in quote marks if you are sure of exactly what they said (or what you said).
    For example, I had a meeting with a prospective school principal, plus the district Special Education rep, plus me. I took my laptop in with me so I took accurte minutes and would actually transcribe what these people said, where I could. When I look back at my notes of that meting I actually have some of it in dialogue form (like a play script) with the intials of the speaker (faster to type, and I put a 'key' in at the beginning, with my list of who was present). These notes mean that if I choose to, I can directly quote any of the speakers from that meeting. Where I didn't quote directly, but only got the gist of what they said, I use a different code, I put it in square brackets (you don't need to use a shift key to use these).

    Here is a sample from my notes (XX was the school principal) -

    " XX: Different teachers have different learning styles so there could be confusion and problems with perceived inconsistency.
    Marg: difficult child 3 will treat adults and children with same approach. If he perceives a teacher as inappropriate he will talk to them as he would talk to another child [we are working on showing him respect to teach respect, plus constantly explaining and modelling that behaviour varies depending on status of person]."

    This is an interesting exercise for me - in trying to find some good examples for you, I have been going through my old notes and feel my hackles rising as I re-hash past problems. We really did have a raw deal with our district, even to the point where the school was told I had to be made to leave, even though I was not causing a scene and was there at the school's invitation. It was surrounding a talk to be given to difficult child 3's class, on what is autism. Sixth Sense program - really good, if it's done right. Trouble is, I found out (and wasn't meant to find out) that in our districtm, it is NOT done right because they carefully don't mention the word "autism" which totally removes any relevance for the class. I strongly suspect that if I had insisted on staying at the school the police would have been called and it would have then played into the district's hands. I chose to leave and to later challenge that request and made a HUGE fuss.

    What helped on that occasion and surrounding related events over the previous few months and subsequent year - I took good notes. My phone began ringing hot that afternoon and I took the calls at my computer, so as each official on the other end spoke, saying things like "work with me on this," and "you have to accept, you were there without invitation," I was able to take them down verbatim in quote marks. And because I had the class teacher having previously written in the communication book, "We look forward to having you in the class with us on Thursday 5 March at 10 am", I was able to claim I had WRITTEN invitation to be present. I also had my own full recollection of my own statement to the principal (which the darling man backed up, even though it meant incurring the wrath of his district office) that I had said the talk to the class could not go ahead without my permission and presence.

    I hope you never need to use your notes, but if you do, it is such a major confidence booster to have it there to call on.

    One last point - this happened about 6 months after I had joined this group. Without this group I might not have had the courage and confidence to stand up to these institutional bullies. It was knowing that our rights were being badly infringed that gavwe me the courage to stand my ground and politely deny that I had been trespassing, or that I had behaved shamefully. I knew I had done nothing wrong whatsoever, but was now fighting a cover-up and a whitewash. The school principal who suddenly found himself in hot water merely for attesting to the truth of a conversation between him and me, was at first shocked and then amazed, and then angry. He had at first been inclined to believe that I was perhaps paranoid. Then he saw first hand what was being thrown at me, and then began receiving these calls himself, urging him to reconsider his story.

    This sort of thing, when it happens Occupational Therapist (OT) most parents, has them cowed and running for cover. IF it is someone telling you that your child has lied to you about an incident when you KNOW you questioned your child carefully so as to not prejudice the answer (and autistic kids are not good at lying, they eventually learn to not try) then you either back down for lack of any direction to go, or you drop the whole thing. We so often are isolated as parents, the more we have to chase around after a problem child, the less time we have to compare notes with other parents of difficulot kids and as a result, when we are told something by someone in authority, we tend to accept it. After all, they are the experts.

    But if you suspect you have a difficult teacher or district, make quiet independent enquiries. Do not allow yourself to be bullied because you have a right to ask questions and as a parent you are NOT bound by official protocol. If you choose to bypass the class teacher or the principal, they may get angry about it but there can be no disciplinary proceedings as there would be if a staff member did this.

    I do get that you are currently running a red queen's race (Alice in Wonderland - "Through the Looking Glass") because as a single parent you have a really full schedule. Don't feel bad about this - you are doing a huge task, it is no wonder if you sometimes feel overwhelmed. You have a right to sometimes feel like you've been run over by a bus. You're not alone.

    So stick around, dump on us, read the book when it arrives and take notes to the best of your ability. As and when you get reports, scan them onto your computer so when you see someone who wants a copy, you don't risk losing your originals.

    Your son is 10. he has a long way to go.

    I like your analogy with the specs. We used computer software as an analogy - the text file that comes off the printer can look exactly the same, whether it was written on a easy child or on a Mac. But the operating instructions to make the software do the job, has to be very different for a easy child than for a Mac.
    Some people have mac brains, some have easy child brains. Neither is better than the other, just different. But if you try to use the wrong operating instructions, you will get nowhere.


    I am now putting it all down into a book. I'm thoroughly enjoying the process, it is very cathartic. I'll undoubtedly change names of the guilty (again, enjoying choosing obvious fake names - again, cathartic) but once again, having thorough notes is really helping me with this.

    You might never need to use any of it. In which case - all that will happen is maybe your typing speed will improve.
  18. SRL

    SRL Active Member

    One of the things that has helped me cope is to accept that I can't accomplish all things that I'd hoped but that others may be able to. For instance, in order to survive around here chores have always been basket C. Normal picking up of clothes, taking dishes to the sink, etc. came later than it would have and extra family jobs just don't happen at all. I used to really fret over it knowing there's a gap but then have come to realize that my child is coming through on the school front in organization, upkeep, etc. Peer pressure and other adults have been able to make this happen out in the real world, even though I haven't been able to at home. It's not how I'd like it, but I have mostly peace with it.
  19. Nomad

    Nomad Guest

    Hi...welcome. I think it is healthy to look for support. It is a weird thing though. Like with all difficult things, one needs to get additional information and support, but one also needs to make the choice to accept the difficulty and move forward. You can't live in the reaction phase coninuously. For me, coping is largely about a variety of things. What I mentioned about information and support, combined with good self care and pushing myself to move foward in enjoy life as best as I am able. This is how I cope...and at times...mroe than cope. Wishing you well. No doubt wont be easy. But with effort and support, you can put changes into place that will not exactly make you "resign" to things. You can do what you can to help your child, detach when needed, hope for the best, improve upon yourself and develop an attitude of strength. In time, peace and joy will return.
  20. fosterparent

    fosterparent New Member

    Having an IEP is not always helpful. I had no difficulty getting the IEP for my oldest twin, but all of her teachers seem inept!! I hate for the phone to ring. "Come and get her or she'll be suspended again." "She's talking negatively, could you talk her down, so I don't have to send her to the office." I say to the teacher, do you have ANY policies in place to deal with this. I should not have to discipline her from home or work. Is this the only ADHD child with learning disabilities you have every taught???? When they don't know what to do with them they suspend them. Well, I requested a meeting, cc'd my attorney and had a meeting two days later. Believe it or not no calls in the last two weeks, until today. Stand firm and say what you mean and mean exactly what you say. She's 12 and had been blamed for everything from hitting a patrol member (mind you the teacher was not interested in the fact that the patrol boy at hit her on her rear, did not want to hear it) so when she retaliated, she was sent to the office for touching another student. She is suspect in everything that happens if she is in the vacinity and I'm getting really tired of it. Vent, Vent, Vent, Vent. Thanks. I'm offering no real advice, today is just one of the bad ones. You are definitely not alone.