wish I didn't have to be here

Discussion in 'General Parenting' started by boo, Jun 10, 2010.

  1. boo

    boo Guest

    I've been lurking on this site, reading posts. I, just like all of you, didn't ask for this and never imagined life would be this way.

    My son, B, got his braces off today. Two years of panic attacks every time he had to have them adjusted. The last month spent preparing for today. Transitioning him for the change. Preparing for the panic. He was freaked all morning, convinced that they would be pulling out nerves connected to the back bands on his teeth, 3 calls to psychiatrist and 3 ativan later I get him to the office. My easy child, E, went with him to the back for support. He did great, I could hear them laughing while I was in the waiting room. 45 minutes he comes out, I managed to get a forced smile. Nurse said he did great, could eat in 20 minutes, good to go, no restrictions, bring on the corn on the cob. I got him to the car and he immediately starts in with "I hate this retainer thing, I can't talk, I can't say "s", it feels weird.... blah blah blah. From one bad thing to another. I feel like I have the only 15 year old that is not happy his braces came off. Then I come to this site and read your posts, I am humbled.

    It's just a journey with so many bumps, I try to be like a river winding around the rocks with ease, easier said than done. It's like trying to fill a bucket with holes.

    Oh, he also told me this morning that I raised P, my little one with ODD, to hit, to be the way he is, it's all my fault.

    Is it possible to be autistic/asberger's without the lack of eye contact, socialization issues? It doesn't really matter what box he fits into, the box keeps changing.

    I could go on and on, but that is my story for the day.;)
  2. boo

    boo Guest

    My post didn't have my signature, hope it works this time....
  3. susiestar

    susiestar Roll With It

    Hi and Welcome!! You have certainly found the right group! I am sorry you needed to find us though, I wouldn't wish this on anyone.

    It is quite possible to have good eye contact and good social skills and still have autistic traits or an autistic spectrum disorder. My difficult child has very good eye contact and always has.

    The braces removal sounds awful. I am glad your easy child was willing and able to help him through it. Some kids do NOT do well with any kind of change or transition. Has your son ever been evaluated for sensory integration disorder? It would be done by an Occupational Therapist (OT). Is he a picky eater, highly sensitive to textures, seeks out or retreats from certain types of sensory input? these are signs that he may have problems with how his brain handles input from his senses. Normally kids are diagnosis'd and treated when they are much younger. The private Occupational Therapist (OT) we saw told me that it would not hurt my other kids to use the various therapies on them but she didn't know if it would help. We found it did help quite a bit.

    Your son is diagnosed with a lot of things. ODD is a garbage can diagnosis. It describes a set of behaviors but gives zero information on how to treat it. Telling you that your kid does the opposite of anything you want done because he wants to defy you is fine. It would be a heck of a lot more useful if there was some direction given to help treat it though. Many of us have found that when we have the right diagnosis and the right medications and treatments the ODD behavior goes away or is at least significantly improved.

    Your difficult child 1's diagnosis'd are largely anxiety related or contribute significantly to anxiety. Many aspies also have ADHD and Obsessive Compulsive Disorder (OCD) diagnosis's. In reality those behaviors are a symptom of the aspergers or Autism Spectrum Disorders (ASD) (autistic spectrum disorder). If you can find ways to help the aspie understand the social skills and develop ways to handle the various things that cause the anxiety then you see a big improvement overall.

    Bipolar tends to run in families, as I am sure you know. Have you read "the Bipolar Child" by Papalous? It is the "bible" for those of us with bipolar children. Sometimes you must treat problems in a certain order. If the right medications are given in the wrong order it can keep them from working. Many medications cause cycling in bipolar children. Stimulants are one of them. Your son is on no medicines to stabilize his moods. When bipolar is suspected it is usually best to tackle that first, at least in regards to medicine. If you add a first line mood stabilizer and give it time to be fully effective you can then add other medications to treat problems like adhd. For some of the kids with bipolar, if you treat the bipolar some of the other things go away. Some moods of bipolar kids can look like adhd. For these kids if you stabilize their moods the adhd is no longer an issue.

    The bipolar Child has the in depth reasons for all of this and it has the recommended medication protocol for kids with bipolar. You might want to take this to your son's psychiatrist and ask if this is something you should try.

    Well, that is probably enough of a book for now. Welcome to our little corner of the internet. Check out the FAQ/Board help area for tons of helpful info.
  4. crazymama30

    crazymama30 Active Member

    Hi and welcome. No one really wants to need to find this site, but once we are here most of us find it a great comfort. Anxiety is a bear, and goes hand in hand with BiPolar (BP).

    The bipolar child is a great book, I have a copy and should probably re read it.

    Another book that pertains more to adults (my husband is BiPolar (BP)) is "why am I still depressed?" by Jim Phelps. It is not about depression, but about BiPolar (BP) II and the bipolar spectrum. I found it to be very informative. http://psycheducation.org/notes.htm that is a link to the website that goes with the book, and you can get to the author's regular website from there.

    Hugs and a warm welcome. I am glad you found us, but sorry you needed to.
  5. Marguerite

    Marguerite Active Member


    The problems with transitions, the sensory stuff, the anxiety issues, the way he talks to you as if he is an equal (that also is poor social skills, he has learned all his social skills by imitating you and how you talk to him) - it all fits.

    The brighter ones can sometimes slide by until mid-teens, then at some point they hit the brick wall academically, socially or both. Welcome, sorry you need us but glad we're here for you.

  6. boo

    boo Guest

    Currently my son, B, is not in school. We had to pull him out in November or 2008 because he would not stay in the classroom. He was just getting up and leaving and the school was afraid he was going to leave the building. We "forced" a tutor on him. Explained that since he was not in school, he as a minimum had to have the turor come. He was miserable to the tutor. Refused to do any work. He started high school but kept leaving classes so we pulled him out again. He does have an IEP, not that it is of much help. He is signed up to do on-line school but he is not doing it. He also says that high school credits are stupid and that they are purposely set to keep him from graduating. Funny thing is that he has no credits and they are still allowing him to be a sophomore next year, makes me furious. He sits in his room all day watching movies, tv shows on the internet. Most days he doesn't want to leave the house. He will go to the recreation center where I work out. He socializes with all the adults there. It is like he is a different kid. I don't understand. This comment you made about copying behaviors resonates with me. He has never been evaluated for Asperger's, sorry I spelled it wrong before. He sees a psychiatrist who also does therapy. He is a good doctor, I don't think we could do better but all he does is comfort B and help him accept his limitations. His doctor says B is in denial and not accepting he has an illness and until he does there is not much we can do but support him. I feel like I am going to be taking care of a "man-child" for the rest of my life. I keep waiting for B to step up.

    I'm venting, sorry. These are some things he does, he won't use a glass more than once, he takes his socks off the second he comes into the house, I find socks and underwear in the garbage all the time. He throws silverware away. He won't use a spoon or fork if it has a spot. He knows all the Tyler Perry movies by heart and can quote Madea at any given moment. He will never do what I say, always the exact opposite. He is extremely intelligent but has no common sense whatsoever. He is convinced he has a brain anyeurism (sp?) and is going to die at any moment. He was talking about suicide, we took him to the hospital for a visit and he sat there and laughed and said "this is just like an episode of House!"

    My little guy, P, is constantly yelling and calling me stupid and an idiot. He won't poop on the potty. He will pee but not sit and poop. He still goes in a diaper. I have to give him Miralax every day so he can't withhold it. He did that when he was younger. I don't know why he won't poop on the potty, something he is afraid off. He will be in first grade next year and at school all day, don't know what he will do. Is this a common trait? He is perfectly enjoyable and loving as long as things go "his" way. He gets up at exactly the same time every day. He is showing no signs of any concern at school. He hates "tags". He will only eat pasta, crackers, cheese, sometimes chicken. If something has a weird texture or spot on it, he gets upset. We tried him on risperdal and had some good results but his eating got soooo out of control, we are trying abilify now and I think the aggresion has actually gotten worse. Not sure what is next.

    If any of you "experts" have advice I'd appreciate it. I am working the hardest at changing the way I react to things, staying calm in the middle of the rages. I know it is trial and error, I write everything down. I'm trying to get a copy of Explosive Kids from the library. There is a website called "Thinkkids.org" that has good advice. Thanks for giving me a voice. I am often stuck here at home and not able to get out. I can't talk on the phone to friends because, B, hears everything and it all comes back at me. Oh, how I could go on, I'm sure you all know....
  7. Marguerite

    Marguerite Active Member

    Again, this fits. I think a big reason for this is, older people are more consistent socially in their behaviours and reactions. I stopped worrying about it when I realised my kids were actually OK with adults; after all, the majority of their lives, they will be needing to interact as adults (with adults, mostly) and not as children. When they need to interact with children later in life, they will be interacting as adults, not as equals.

    You're saying he won't do schoolwork at the moment, and from my own experience, trying to force the issue in anything with kids like this, is setting you up for failure. It is better to not try, than to try and fail.

    You say he gets on OK with adults, so here's an idea for you to get him to do something constructive - get him to record people (especially older people) and then transcribe their words into a text file. There is a market for this sort of thing; besides, as our older folk die off with things left unsaid, we are losing an irreplaceable resource. If he gets on with older people then this could be a really productive way for him to use his time, as well as a good way for him to hone his social skills. Especially skills at listening. There are so many ways in which he could do this, and improve how he does it.

    The first stage in a project like this - find someone with a story to tell. And since everyone has a story to tell, this shouldn't be too difficult. A good person to start with could be a veteran.
    Next step - ask their permission formally to record them talking about their experiences. You may need to set up some parameters, perhaps with an organisation that would very much value these memoirs. Perhaps a veteran's association, or a local historic group, or even the person's family. You (or someone in the organisation) could help here by giving him a list of questions he could ask, and perhaps rehearsing it with him to help him know when to shut up and listen, and when to ask the next question.
    After this, a skill he needs to learn (and this can come as he transcribes the memoirs - some more questions may occur to him, some bits of information that the person may have left out) is to recognise when to ask a spontaneous question, such as "Can you tell me more about what was happening here?"
    This is an important skill in conversation, too. He will learn how to listen well enough to be able to identify valuable information.

    About your younger son - the tendency for both boys to have Asperger's is worth considering. Certainly in our family, we say it doesn't just run, it gallops. What you describe with your younger son sounds a lot like difficult child 1 at that age. The pooping problems - boy, does this sound familiar! We would find with difficult child 1 that he would go a week between pooping (when he was 2 years old) and his grandfather had to literally bully the ?&:* out of him when we visited each week.
    With difficult child 3, we used bribes and even then it was a huge deal. He wouldn't use a toilet away from home for ANYTHING. As for pooping, I often was called to the school to clean him up. The sensory issues you describe can also flow on to general excretion issues; they don't always recognise the body signals, or they can be hypersensitive to them.

    One funny incident I remember from when difficult child 3 was about 8 years old: early morning, we heard him get out of bed and head to the toilet. He hit the door hard as he went in there, we heard the usual early morning impression of Niagara Falls, then we heard an exasperated kid say, "Every morning there's wee!"
    As if he felt that it was something he was going to one day grow out of.

    Looking at your family - I would strongly recommend you get them all evaluated by a neuropsychologist. Different specialists work in different ways. A good counsellor or therapist is invaluable, but can't themselves diagnose. You often need other experts along the way who have assessed your child, to also have their reports considered. For example with us. difficult child 3 was seen by a Speech Pathologist when he was younger, who formally diagnosed language delay. Her report then was part of the whole submission to a neuropsychologist who was then able to say, "Given the other information provided by other specialists, I can now say with certainty that this child has autism."
    So your family - both boys have enough related issues for me to think that assessment for Asperger's would be worth trying. And your daughter also needs to be considered too. Her depression could be related to the other health problems she has, but it is also very much a facet of Pervasive Developmental Disorder (PDD) in its various forms. Pervasive Developmental Disorder (PDD) also presents a bit differently in girls.

    Another thing I want to pick you up on - B doesn't like to consider himself to have an illness. Frankly, I support him in this. For him, he feels perfectly well. The idea of mental illness is something that teens especially, teen males especially, don't like to accept. On top of this, Pervasive Developmental Disorder (PDD) kids see themselves as normal and the rest of the world as flawed. In our family, we don't view Pervasive Developmental Disorder (PDD) as a disability (although we do use that word sometimes). We refer to it as different; the brain of someone with Pervasive Developmental Disorder (PDD) learns in a different way, and we need to take this into account when we are teaching them or working with them. At the same time, because this world is unfair and it's a case of majority rule, the kids need to do their best to adapt to working with things as they are. For example, left-handers need to learn how to live in a right-handed world. I am a left-hander, but most scissors have to be used in the right hand because otherwise the blades pull apart slightly instead of push together.

    If you asked difficult child 1 about autism and Asperger's, he would tell you that he has Asperger's and it means he needs to write things down in lists so he can keep track of what he needs to do, but it also gives hime a lot of special skills he values in himself.
    difficult child 3 doesn't need to write down lists, but he has other needs as well as skills. difficult child 3 and difficult child 1 are both highly distractible; but tey also have considerable gift for fine detail and an ability to focus at a deep level on minutiae, for a lot longer than most people. Their talents are valued. difficult child 1 worked for a furniture company who quickly realised his attention to detail and extreme sensory sensitivity was a godsend, they put him in the sanding booth checking quality control. difficult child 1 could run his fingers over a piece of sanded furniture and rapidly find the flaws still needing to be worked on.

    So don't focus on this as an illness or a disability; instead, this is simply a matter of functioning a different way.

    The world is a complex, confusing place and the interface between it and our Pervasive Developmental Disorder (PDD) kids is sometimes scary. In some aspects, they take longer to mature and to learn. In other ways, they are bright and they also can skip stages of developmentand surprise you. It is out job as parents, to help our kids find where they need more support and to ease them through this stage. We also have to fiind where their skills lie, to support them in their abilities and make them feel good about what they can do.

    Anxiety can be crippling. It also can have many causes. But while you're looking for a cause and also looking for a way to help them deal with life, it is also important to help them cope with each small crisis, to keep that crisis small and not let it get out of hand.

    These kids are different. Therefore when we try to force them into the same pigeonhole as others, we're likely to have problems. If we simply let them be who they are and accept them as they are (as long as it's not too disruptive) then we are showing them that we love them unconditionally. We're also reducing their stress and anxiety, because it is hard work to fit in. The less work they have to do, the faster they will adapt where they really must.

    For example - both my boys have various stims, or tics, or habits (depending on what you call them). They seem to need these as a coping strategy, but some of them have been disruptive around other people (such as noises). We've also had our problems with toilet training; with other social issues; with raging at times; with sensory problems. If we try to fix it all at the same time, we set them up for failure because it feels like we're constantly picking on them. But if we just work on one or two things and let the rest wait (for now) then they have a better chance of making the change.

    I hope you can find the book in the library. But in the meantime, go to the Early Childhood forum and look at the stickies there.