I am inviting these parents here ...

Discussion in 'General Parenting' started by TerryJ2, Dec 22, 2008.

  1. TerryJ2

    TerryJ2 Well-Known Member

    I hope it's okay. This is a very interesting article. (See below)

    The Richmond Times Dispatch and the Daily Press have been running articles in the past yr on mental illness and state institutions, and the lack of funding. (I posted another one a while back but I think I put in on the Watercooler because it was quite different.) This is one of many, but it really hit home because it's a kid so much like my own, and he's not an adult who's been in and out of prison or who has other special needs, as the newspapers have highlighted in other articles.

    Of course, I can't guarantee the parents will join us. You know how we all invite people and you can lead a horse to water ...

    Just from what I've read, I think this kid may have Asperger's. (He may also have bipolar.) I'd love to get those parents online here so we can find out more about their 14-yr-old son's sleep/wake patterns and his early development.

    They're clearly not worried about their identities!;)

    What a sad, desperate story.
  2. eekysign

    eekysign New Member

    It occurs to me that for those of you in the RVA area, it might be good to know that the University of Richmond Law School has a Children's Law Clinic that deals with disabilities, educational issues, etc, for free. They are usually absolutely swamped with cases, so the chance of getting their help is slim, but if you're having REAL documented issues with your school district, they might be able to help. Always worth a try, if you feel you have a decent argument, and some good written/etc proof for the law students to work with.

    For those of you not in that area, many schools across the country have similar programs. Something to check, if you're absolutely at the end of your rope with your school district.
  3. TerryJ2

    TerryJ2 Well-Known Member

    Eeky, you're back! Hi!

    Thanks for the info. :)
  4. klmno

    klmno Active Member

    Well, I read page 1 and will finish this later. Except for the feces part and the early onset part, this could be my son. It sure sounds like my life! Thanks for posting this- I'm glad to hear it was in our newspaper.

    PS- If they come to dinner- would you mind asking them HOW they got their "plenty of state and local help"?? I'd almost bet- they went thru their local mental health probably has a much more resonable process than ours in this county. But, if you hear of any methods to get it, please let me know!!

    Thanks! And I don't know about asberger's, but from what I read on page one, except for the feces part (not sure about that one)- that fits the bill for bipolar froma ll the profs I've talked to.
  5. Marguerite

    Marguerite Active Member

    Terry, you're doing what I would do.

    A strong suggestion - use your gut, but I would hold off mentioning this site to them for a while because it will "out" you if you do so. Sometimes it can turn nasty. I have been very reluctant to share you guys with people who know our family personally, for fear of innocent gossip "outing" me to any of my stalkers.

    I know that seems selfish, but it's self-preservation born of past unfortunate experience. I know you guys could backtrack me from here - I don't care about that. I just don't want people who know my real ID to track me TO here. I know some of them would happily print everything I'm writing and show it to people who resent my activism.

    I agree, Asperger's needs to be considered. I would be concerned about a BiPolar (BP) diagnosis made at age 4. I'm getting the vibe that a lot of doctors make that diagnosis because the child is obviously depressed when they see him, but at other times the parents report the child is happy. This is normal, folks! Except that a Pervasive Developmental Disorder (PDD) kid who feels different, confused, often ostracised and upset thet the world isn't doing what HE wants it to, is going to also at times feeel very unhappy about this and yes, be very depressed.

    There are many kinds of depression, but two main types - endogenous (depression from inside you, no outside cause you can connect it to) and reactive depression, where you're depressed because the dog died, or your favourite toy got broken. There can be an element of endogenous depression with Pervasive Developmental Disorder (PDD), but mostly any depression is clearly reactive. Too many doctors either ignore this, or can't distinguish between them and happily leap onto a handy label that fits the moment.

    oooh, it makes me so mad!

    I certainly would encourage keeping an open mind about ANY diagnosis handed down at the age of 4. I include myself in this - I've questioned the diagnosis of my kids, numerous times over the years.

    Something else that really bugs me - the number of people who announce in hushed, horrified tones, "My child threatened to kill me!" as if this is a huge concern in every case.
    Don't get me wrong, I'm not belittling those cases where the kid clearly is having trouble with reality, with endogenous feelings of aggression and voices telling him to hurt his family. But that is VERY different to an enraged, extremely frustrated child screaming at his parents, "I wish you were dead!" or "I'm going to kill you!" Even when they scream out HoW they intend to kill you, if the kid is raging, especially if they're raging because you've just disciplined them in ways the kid feels is very unfair, it should not be seen as a genuine threat. Not automatically.

    How many of us grew up with angry parents occasionally saying something like that to us? How man of us, as kids, said to our mates something like, "I'd better hide this rip in my trousers when I get home; Mum will kill me if she finds out I wore my good trousers while rock climbing."

    people say things in anger and they shouldn't necessarily be seen as a dire threat. They DO deserve a mention (as indicative of the degree of rage the person felt) but to use it as part of a diagnosis, really upsets me. By that yardstick, most members of the human race would get a diagnosis of BiPolar (BP). And another thing that bugs me, is doctors with revolving door diagnoses. In other words, everyone who goes through the door comes out the roundabout with the same diagnosis. Like an assembly line, the receptionist somewhere along the line taking your money and putting it in the doctor's account. A money machine for the doctor, instead of a considered, careful diagnosis.

    Some kids undoubtedly deserve their BiPolar (BP) diagnosis. However, I always recommend challenging it repeatedly. Challenge anything else also. because a diagnosis that can stand up to repeated challenges (as difficult child 3's has done) is a diagnosis that seems fairly stable (unlike the child, quite often).

    Eeky, thanks for that info. No help for me, of course, but there will be a lot of people who will use that info to stop wasting their time trying to get their foot in the wrong door.

    It's also useful to note that this service exists - we DO have something similar in Australia, there are a number of groups that will work for free to help various people in need. We also have a Children's Legal Service (attached to one of our universities) who will go to bat for any child with a problem with bureaucracy. I used them for easy child when she was being hassled and victimised by local transport staff. Sometimes us parents tend to only think in terms of services for health or disability. Sometimes the services are available outside this area, but still applicable within it.

    Thanks for the reminder of that.

  6. klmno

    klmno Active Member

    Terry & Marg (& others)- I don't want to hi-jack the thread- but I think this raises a question of mine. When I was going through the phone interview with the psychologist to see if difficult child qualified for a bipolar research study, she asked me some questions that made me think she was checking to see if he was possible on the Autism Spectrum Disorders (ASD)/Pervasive Developmental Disorder (PDD) spectrum or if he had potential for developing a personality disorder. I'll relay some of these questions and I'm wondering- do you think if the answer is "yes" to some of these questions, would that mean possible aspergers?

    1) Did difficult child have major irratibility as a young child
    2) Did difficult child reach developmental milestones on time?
    3) Did difficult child have sensivities to any food, clothing, sounds, or smells?
    4) Between ages 4 and 5yo, did difficult child show empathy?
    5) Did difficult child participate in pretend play between ages 4 and 5yo?
    6) Did difficult child interact like he had made friends and play with other children his age between ages 4 and 5yo?
    7) Has difficult child ever hurt an animal (I'm assuming this would indicate other types of problems)
    8) What age was difficult child when I first noticed that something seemed out of the normal realm? (That is probably a standard question to narrow down a lot)

    My answers for difficult child were "no" for questions 1, 3, & 7, and "yes" for 2, 4, 5, & 6. He was just shy of 11yo before there was any indication of a problem- and that started as depression.
  7. Marguerite

    Marguerite Active Member

    It's so hard to distinguish sometimes.

    Looking at those questions,

    1) Irritability - well, not necessarily irritable, but Pervasive Developmental Disorder (PDD) kids often throw tantrums because they can't make their wants known well and also because what they want can be highly specific and they get very frustrated when they don't get it just right.

    2) developmental milestones such as walking, crawling etc - yes, normal. Talking, smiling, laughing - can be on time or can be delayed.

    3) Sensory Integration Disorder CAN be a common finding in Pervasive Developmental Disorder (PDD). Not always, though.

    4) Empathy - it depends on how you define it, how it is observed. Very subjective. Pervasive Developmental Disorder (PDD) kids often don't show their feelings in ways we recognise, so here is where this can get confusing. They also find empathy difficult. The world revolves around the child, for much longer than is usual. All kids are egocentric to begin with. Pervasive Developmental Disorder (PDD) kids remain egocentric for much longer.

    5) Pretend play - tends to be delayed or absent in Pervasive Developmental Disorder (PDD), especially when preschoolers.

    6) This sounds like they're asking if his play with other kids seems normal, the same as other kids his age. Pervasive Developmental Disorder (PDD) kids don't socialise normally or play with other kids in quite the same way, although as pre-schoolers this is often less obvious. The older difficult child 3 got, the more obvious were his social differences. But as he's now nearing mid-teens, he's learning how to behave more like other people and is playing in more typical fashion.

    7) Hurting animals - the lack of empathy sometimes means a Pervasive Developmental Disorder (PDD) kid will hurt a creature because he doesn't realise it has feelings. But deliberately hurting another living creature - less likely with Pervasive Developmental Disorder (PDD). It can still happen, though. They would have to feel very angry and that is definitely possible.

    8) When did you first notice he was different - a useful question. Most parents of a Pervasive Developmental Disorder (PDD) child notice changes well before school age. With difficult child 3 I first began to worry when he was about 18 months old, maybe a bit older. But when I look back, I can see signs of him being different when he was only a week old.

    It all does vary from one child to another. Asperger's kids show less differences at an early age, because the language delay is really a big issue and Aspies generally don't have language delay.

    With a list of questions like that as the only measure separating BiPolar (BP) from Asperger's. I would not have much confidence in the accuracy of the diagnosis.

  8. klmno

    klmno Active Member

    Thanks, Marg! I was just interested in learning a little more- the psychiatric who was asking these questions wasn't evaluation'ing difficult child to give a diagnosis, this was a telephone interview used as one step in the process of determining if he qualifies for a BiPolar (BP) study. She also asked if any prof had ever said that he might be on the Pervasive Developmental Disorder (PDD) spectrum, so that also made me think the questions had something to do with that. Maybe they are researching those diagnosis's, too.

    Sorry- Terry- for the hi-jack...
  9. TerryJ2

    TerryJ2 Well-Known Member

    Klmno, I think they were trying to narrow things down. As you indicated your answers, it doesn't appear there's a lot of Pervasive Developmental Disorder (PDD) there, in my humble opinion. But she could have been doing more than one study and searching for candidates. Who knows?

    Marg, it didn't occur to me that this couple might come barging into my life. I am definitely a Pollyanna!

    If my kids recorded everything I said as a threat, it would be laughable. Or embarrassing, depending.
    "You're grounded for the rest of your life!"

    I haven't heard anything back in reg to my email ... that's bad and good.
  10. klmno

    klmno Active Member

    Terry- again- I can't speak for families where aspergers is involved (I don't think) but with Bipolar (assuming my son's diagnosis is correct- or at least we are sure major depression is an issue)- there are times when nothing is stable or predictable or can be planned. I really wouldn't take it personal that you have received no response from them. They could be people you are better off not knowing, they could be people who aren't interested in networking supports, but they might also be in the midst of a psychiatric hospital stay, or a family crisis, or be trying despartely to keep a kid safe who can't go 5 mins without supervision. Their description in the paper (what they are living with now- not the early childhood years and not the feces part) sounds som much like my homelife with difficult child, I can't begin to describe to you that there are times- long periods of times, when everything is normal. But there are times that the parent is lucky if they can have a cup of coffee and go to the bathroom. I used to have to plan a strategy to get a shower.
  11. 30 and searching

    30 and searching New Member

    I just read this story , and I feel for this family. It is sad that they are not getting all the help they need for their boy. It also makes me angry that a group home setting is not considered to be needed in this situation.

    I am jaded, though. I tried to get my oldest help, I went to court and fought the county, because he needed more help than what was being provided. I lost. That is a story for another day.... I hopefully will post about that experience when I feel more comfortable. Maybe I am just depressed, and highly emotional right now, but this definatly struck a chord with- me. I also feel that it is indeed more expensive for out- of- home care, and that is why it gets denied a lot. Just my thoughts.