Introducing us

Discussion in 'General Parenting' started by zaftigmama, Dec 28, 2011.

  1. zaftigmama

    zaftigmama New Member

    Hello all. So glad to find this forum.
    I am married, mom to twin six-year-old boys; we live in the Hudson Valley. Right now we're homeschooling and it's driving me :rollingpin:

    The boys were born at 27 weeks and spent three months in the NICU. Twin A ("Bug") had a brain bleed when he was born (known as an interventricular hemorrhage), the most severe kind,a grade IV. He's been in early intervention, CPSE, etc--he has Aspergers-type autism and mild CP. He just had surgery for esotropia (eyes). He has pronounced sensory needs, is a spitter, food stealer, etc. He's also hyperlexic. He's been reading since he was about 2.5, and he's extremely bright, has a photographic memory, etc.

    Twin B ("Brownie") was a fussy infant, colicky, etc, but was a pretty mild-mannered toddler. Right around three all hell broke loose. He suffered from extreme constipation/encopresis (stool holding). A lot of his behavior at the time was just normal "three" stuff, I guess--but it's not like all that much has changed. When he was four, he was diagnosis'd ADHD. When we returned to the developmental pediatrician, she changed his diagnosis to "anxious and oppositional behaviors"--useless.

    He is intolerant of any and all limits. We do go through "lulls"--but the most benign requests/discussions can trigger bizarre, violent reactions. We were discussing presents for his grandparents--he didn't want to get them anything--and I was explaining how it would be fun to look for things, etc and the next thing I know his DS is richocheting off my dashboard. So no more DS in the car. :sigh:

    If we try to give him a "countdown" or warning or whatever you call it: say, ten minutes until it's time to get off the computer--the minute we mention it he slams the computer shut, runs away screaming, etc. Things were a little better for a while, but now we're back to the old ways, so I guess the computer will be off-limits again for a while

    He has an IEP, but the school administration tried to retain him for Kindergarten, which we objected to for a number of reasons. Right now both boys are homeschooled while we consult with a lawyer about next year.

    Homeschooling is awful. Very few families/programs are tolerant of their needs. Brownie does weird things like run away the minute an adult speaks to him, or if the mildest correction is made it's "you think I'm stupid, you hate me" etc. We've also heard plenty of "I hate you" etc. Sigh. Again.
  2. TeDo

    TeDo Guest

    You have come to the right place Zaftigmama. I am really sorry things are such that you had to find us. I can relate. difficult child 1 was almost kicked out of kindergarten and sent beack to preschool. Last spring, the school did everything they could to kick difficult child 1 out of the school district. We are now doing an online school from home. It has worked great for both my kids (difficult child 2 CHOSE to switch because he wasn't being accelerated & challenged enough). The nice thing for difficult child 1 is that we can take as many sensory breaks as he needs whenever he needs them. As long as we cover the subjects and put in 30 hours a week, all is good with the world. difficult child 1 can be explosive and angry at the drop of a hat, especially regarding school work. Our Occupational Therapist (OT) found issues beyond just sensory. difficult child 1's brain doesn't process black letters on white paper very well. His brain doesn't tell him when the pencil is on the paper so he writes way too hard causing his hand to hurt when he writes. These are the two biggest hurdles that really affected his school work. Too bad the school Occupational Therapist (OT) didn't see ANY issues at all. A THOROUGH reading evaluation revealed that difficult child 1 struggles greatly with comprehension, inferring, and summarizing. We are starting a thorough language processing evaluation now.

    Now for questions. Does Brownie take any medications? Have you seen a neuropsychologist or Child Psychiatrist? If not, that is where I would start to get to the REAL bottom of the problem(s). Are there any mental health issues on either side of the family (diagnosed or just suspected)? How was his overall development? Did he meet milestones on time? Have you had an outside Occupational Therapist (OT) or Speech evaluation?

    Sorry for bombarding you but the more information we have the better we are able to help appropriately. Again, welcome.
  3. exhausted

    exhausted Active Member

    Hello and welcome. You have your hands full but have come to the right place. I have no advice except to say that I raised a very active and grumpy ADHD boy. He is now 24 and doing so well. He has a great job, which he loves, and a band that plays all over. There is hope.
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi and welcome to the board.

    I would have him re-evaluated and I'd take him to a neuropsychologist. in my opinion and experience I feel they are the best diagnosticians. I think more is going on than ADHD and ODD is not a useful diagnosis. Many of us here just think it is a diagnosis given when the doctor is saying "I don't know." How were his developmental milestones, such as eye contact, speech, imaginary play and motor skills? Does he take toys apart rather than playing with them (except for videogames) Can he transition from one activity to another without raging? Does he ever copy what he watches on TV or what you say? Any strange quirks?

    Are there any psychiatric problems or substance abuse on either side of his genetic family tree? Any mood disorders, thought disorders, violence or suicide attempts? Any "funny" aunts or uncles? Is anyone diagnosed with autism or Aspergers?

    I agree that holding Brownie back a year won't help. in my opinion he has something going on and holding him back is not going to change that. He needs extra help and interventions and he may need medication, but that depends on what is wrong with him. You will probably also have to alter your parenting technique. Normal parenting normally does not work well with our kids and just causes us to live in chaos. I recommend buying "The Explosive Child" by Ross Greene. But I'd still take her to a neuropsychologist.

    I'm glad you found us and please keep us updated. We will try to help.
    Last edited: Dec 28, 2011
  5. Bunny

    Bunny Guest

    Hello, and welcome to the board. You will find alot of support and comfort here.
  6. Malika

    Malika Well-Known Member

    Hello zaftig (by the way, I looked this up out of curiosity and found that it is Yiddish for "deliciously plump" as you perhaps know :))
    Well, yes, I can relate... These kind of explosions happen daily in my house also. You must read a book called "The Explosive Child" by Ross Greene if you have not already done so. It is very difficult to retrain oneself to realise that the child's lack of impulse control and constantly aggressive responses are not wilful but largely beyond the child's will but doing so seems key to forging a new kind of relationship and behaviour management. I would second the suggestion to have a more detailed evaluation if that is possible for you.
    When you say the school administration tried to "retain" him, what does that mean? What are you hoping will happen next year?
    Hugs. It ain't easy...
  7. buddy

    buddy New Member

    HI there, as you can are among friends! I am gonna throw something out there. I too have a brain injured child. He is also diagnosed with Autism Spectrum Disorders (ASD) like your son. Always a question of if the brain injury causes the Autism Spectrum Disorders (ASD) symptoms....BUT there is a family history of Autism in his bio family. The Autism Spectrum Disorders (ASD) may have nothing to do with the brain injury. Maybe you are like many of us and of the world....just lucky enough to have kids with Autism. Autism is such a huge spectrum and maybe your Brownie has enough traits to at least be Pervasive Developmental Disorder (PDD)-not otherwise specified. His explosions with transitions and not getting the social aspects of present giving etc. could be many things but given you have a son with a diagnosis of Autism Spectrum Disorders (ASD)/Asperger's type of issue... he may too. Sometimes this is not a clear when they are little. If it is milder you may just see the behaviors and attention issues. One thing that will not hurt at all would be to use the Autism Spectrum Disorders (ASD) techniques you use for Bug with both boys. Instead of using verbal count downs, maybe try visual timers from the beginning of an activity. Before even doing that, write out a story explaining how the rules will be. (called a social story, when we have computer time we will use a timer . the timer will show how much time your turn is. etc....use pictures, mayer johnson ones that are often used for PECS can be a good choice) I always expect the first, maybe even the first few times of rule to be ugly. But once the rule is consistent it is almost too hard to change because my son is so good with routine. Well worth the effort. (no matter his diagnosis, could help both of them)

    I agree with the others, Read The Explosive Child and go for a full neuropsychologist for BOTH boys. I think someone who can get the full picture of your family would really be alble to support you in your challenges with the school. I too have a lawyer now. Many of us here know the warrior mom dance.

    They are so young, I think it is wonderful you are attacking this now. Keep every single thing you do in a file and keep a notebook/journal of all calls and discussions and emails etc. You will be shocked how this may help even if it is needed when they are in HIGH SCHOOL! Eventually you may apply for SSI for one or both and having this will be very helpful. Write all names and dates of evaluations and medications and docs etc.

    Hang in there! Very glad you found us..... HUGS, Buddy
  8. zaftigmama

    zaftigmama New Member

    Ha ha, funny you should ask--I was diagnosis'd BiPolar (BP) type II just about a year ago; before that I thought it was just depression, but a medication change (Abliify) triggered a manic episode. Right now I'm holding steady depending on what my menstrual cycle is up to and hoping that the winter passes quickly. I take Lamictal, Lexapro, Lithium, and Adderall.

    The boys have had evaluations from developmental peds but not a neuropsychologist evaluation. I do have The Explosive Child and find it very useful.

    What I want--I want Bug to go back to his old school, a school specifically for autism, and enroll in the Asperger program there. The school wants him back.
    I want Brownie to go to an excellent school with animal therapy. He really connects with animals, and I think this could be the key for him.
  9. buddy

    buddy New Member

    Sounds like a lovely plan. do they have an school with animal therapy? Our district contracts with a program that has it, not one for my son but a specialized program and I have heard they do that so it is probably out there somewhere. So, they already have IEP's? Sound like lucky boys to have you for a mom.
  10. zaftigmama

    zaftigmama New Member

    Awww, thanks. :redface:

    I hope hope hope all goes according to plan. We finally submitted all evaluations, reports, IEPs, progress notes etc to the lawyer and now we're just waiting to hear back.

    They do both have IEPs. While they were in school, Bug was in a 6:1:2 (autism specific) and Brownie was in a 15:1:2 general Special Education which really had 17 kids in it. Of course, there were students in there (including nonverbal kids) who needed 1:1 and the district wouldn't provide them--so the class aides become de facto 1:1 aides, and the rest of the class suffers. Anyway, Brownie needs to be in a smaller setting, ideally an 8:1:1--we saw AMAZING progress over the summer when the classes are smaller. During the school year, that size is not offered for his functioning level...even the behavioral class is bigger than that, and there's no way I'd want him in there--while I was visiting, the teacher disclosed another student's diagnosis. :ohmygod: So that's out.

    Bug's class just wasn't appropriate. I can say more if anyone's interested. :tongue:
  11. zaftigmama

    zaftigmama New Member

    I have bipolar disorder. On my mother's side of the family there's Obsessive Compulsive Disorder (OCD), depression, schizophrenia, lots of good stuff. Alcoholism and depression on my dad's side. My husband's side of the family is a question mark.

    His brother, Bug, has Aspergers--his diagnosis hasn't been changed from Pervasive Developmental Disorder (PDD)-not otherwise specified, but he's most definitely of that type--narrow interests, poor social skills, highly intelligent/verbal, etc. While Brownie has some of the traits of autism (rigidity, explosiveness) he doesn't have enough to qualify for any of the spectrum diagnoses. He's also just not that way, I don't know--he's very sensitive and perceptive.

    Brownie's developmental milestones were largely on track, adjusted for gestational age. Speech was slightly delayed--but he was a big babbler. He had prosody--it sounded like he was talking. When he started talking, he spoke in complete phrases/sentences.

    More about Brownie--he has separation anxiety, which he didn't really have when it was age-appropriate. He has a very limited diet. It's getting better, but he has food issues still. He worries about getting "fat."
  12. TeDo

    TeDo Guest

    You say Brownie has "food issues still and worries about getting fat". That sounds like an obsession similar to my difficult child 1. As for the "sensitive and perceptive" meaning he isn't on the spectrum, my difficult child 2 is very mature, responsible, academically gifted, sociable (prefers adults), is very sensitive and perceptive of other's feelings. He has been diagnosed with Pervasive Developmental Disorder (PDD)-not otherwise specified because he DOES have literal interpretations of words & phrases, stuck on SOME routines, immature responses to stress and imperfection, concrete black-and-white thinker, and obsessive. His development was completely on track so there were NO real indicators when he was younger. I agree with MWM. It sounds like you might need a thorough assessment by a neuropsychologist.

    Handling things the wrong way because of an incorrect diagnosis can actually cause more harm than good. Many medications for other diagnosis's can actually cause problems for the person if they don't really have that diagnosis. I get nervous so don't take one person's word for it. I have gotten 2nd & 3rd opinions just to be sure.
  13. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    All spectrum kids are different. I don't know if he is on the spectrum or not, but it's the family and he has a lot of traits. they wouldn't diagnose my son until he was 11. Definitely see a least you will get a thorough rundown on his abilities/deficits and can get him appropriate help...

    Good luck!
  14. susiestar

    susiestar Roll With It

    First off, ((((((((((hugs))))))))))

    I know it is hard to homeschool a child who doesn't "fit in" with other kids. Homeschooled kids are more tolerant, usually, but not always. We often found the groups who demanded you be of their brand of religion were less tolerant than public schools. I have homeschooled various kids at various times for various reasons. I tend to evaluate things every semester to see what will work for the child right now. This makes me the "weirdo" in our homeschooling groups, lol.

    Your sons may not be ready to be with other kids right now. I know that makes it hard for you, but they are still young enough that unschooling may be vastly more effective than any set curriculum. If you have not heard of or researched unschooling, don't write it off right away. It is counter-intuitive, but it CAN be the best and sometimes ONLY way to meet a child's needs. It won't happen in any school and likely isn't right for your son with Aspergers, thought I doubt it woudl harm him.

    Unschooling, when done with little electronics esp tv/video, allows kids to eplore their world and learn in a pace and manner that suits them. Tv/videos can interfere with this, esp if tehre are a lot of commercials because it brings things in that tehy just are not ready for. If there are videos that calm them, by ALL means don't get rid of them. just follow your instincts and use them judiciously. Video games can help or hurt, again you have to follow your instincts and judgement and NOT the outside world's.

    This next may sound very strange, but it might help. Do you know anyone iwth a deep, soothing voice? Ask them to record stories onto cd/audiotape for you. Let the boys listen to these when they want. My dad has an incredibly soothing voice and years ago he recorded Uncle Wiggily stories for my kids. He taught jr high and never had a gifted kid in his almsot 4 decades because the other teachers all fought over them. He had the special needs, etc.. kids no one wanted. He gave one of them a copy of a tape he made for my son and it was amazing. This girl had Intermittent Explosive Disorder (IED) (Intermittent explosive disorder) and could trash a classroom in under a minute with NO notice seh was going to explode. WIth use of tapes liek that, she was able to learn to calm herself. She was in jr high, but no one had ever even tried it with her before then. My dad just refused to let a child behave liek that in his classroom so he foudn a way to stop it and now? he just learned that she got an associate's degree and is working with animals and supporting herself and her baby daughter. Talk about a HUGE change that NO ONE expected.

    I found that the deep soothing voice (Dad's is so soothing that we couldn't listen on the car stereo because it put husband and I to sleep! - others have had it happen too) in stories that were so totally designed ffor kids and so totally NOT violent, were amazing tools to help reach my son.

    Today's videos are so violent, we used to have tto remove the dang Disney videos because they triggered violence in our oldest, and it made me SICK and made life a lot harder for all of us. The odler stories, like uncle wiggily, etc.... were a lot more helpful. If you can find someone to record audio stories in a calming voice for your son, it might reach him in an unexpected way and help him learn to self soothe. It takes time, but.....

    I know unschooling will seem odd and maybe strange/bizarre, but I know kids in college with top honors and full scholarships who were unschooled through high school - it puts the child in control and takes out a lot of the artificial demands that are part of traditional education. It isn't right for everyone or every agge, but it can be an effective tool for some.
  15. zaftigmama

    zaftigmama New Member

    Believe me, I know if you've met one child with autism, you've only met one child with autism. I know his rigidity points to autism, I know that for medication a proper diagnosis is important--I had my first true manic episode after taking Abilify. As far as autism goes for Brownie, that may be what emerges eventually. Right now he doesn't fit the criteria (so say the last two evaluations we had). I tend to think it's something else as well, but who knows. I don't really care as long as he gets the help he needs and doesn't fall through the cracks.

    At any rate, they'll both get complete neuropsychologist evaluations.
  16. TeDo

    TeDo Guest

    That would be a great start. I just got the "verbal" results from the one we had for difficult child 1. He saw all the things I have been seeing and added in a severe level of anxiety in "non-home or friend's" settings that I didn't see. His recommedations made a lot of sense and once we get the full written report, I plan to seriously consider public school again IF we can get our (so far VERY uncooperative) school district to listen to the recommendations of the neuropsychologist.

    I agree that the "label" doesn't matter, it's the interventions that do. MY only problem in the past is that the inaccurate disagnoses have led to counterproductive interventions, meaning they made things soooo much worse. That is why I pulled them out of the public school here. I wanted things to get better and they were making things worse.

    I hope things work out for you and if you can find a GOOD neuropsychologist, they will.
  17. shellyd67

    shellyd67 Active Member

    Just dropping in to say Hi and Welcome !
  18. Gr8Gramma

    Gr8Gramma New Member

    Hi to all. I am a great grandmother raising two granddaughters 10, and 13. The oldest is attending a partial hospitalization program in the hope of getting an accurate diagnosis. Since I have not found a support group in my area, I am thankful I found this forum.
    I do have a question and hopefully someone has an answer. One of the forms, regarding school behaviors, asks if she displays denudiative behaviors, nowhere can I find a definition for this term. I'm starting to think this is a trick question to see if I automaticaly answer yes. Thanks for any help you can offer.
  19. buddy

    buddy New Member

    Hi and welcome gr8grandma! You might want to start a new thread to get more answers to this question!

    I wonder if it is a typo. Even long published assessments (and books and directions etc...) can have dumb typos. Just call the therapist who gave you the form and ask what the term means. There are no rules about explaining what things mean in standardized tests unless it is a vocabulary test! (I know, I give them lots)

    The only guess I would have is if it means like picking skin off or picking hair off or doing things that erode the skin or make her covered skin bare. A similar term denuded can mean in medical terms to lose epithelial skin layers.

  20. Gr8Gramma

    Gr8Gramma New Member

    Thanks, Buddy. I am going to repost this on a new thread. The definition you gave was as close as I got also, but the one I found pertained to geography i.e. removing layers of earth.