coming out of lurkdom

Discussion in 'General Parenting' started by barneysmom, Jun 28, 2009.

  1. barneysmom

    barneysmom Member

    Hi, I'm coming out of long-standing lurkdom. I have always read here vigilantly and now I would like to participate. I posted here several years ago before I went into lurkdom. I think I have learned the most here than at any message board.

    My older difficult child (15) is a handful. I homeschooled him for four years (extremely disruptive in school) and then he was able to return to a small school for ADHD and Learning Disability (LD) kids. In ninth grade he got A's and B's until his typical February/March mood swing hit, and he never recovered. It's been a downhill spiral since then, ending up with a stay in the psychiatric hospital for the first week in June, followed by a week in partial hospital.

    He's still irritable and oppositional. Some days I think I can handle it, and other days I think I must despair. His moods have wreaked havoc with our family -- hubby and I have gone to counseling to help hold ourselves together. We are in family counseling too. We also have a 12 year old boy, who has gone from easy child, to difficult child, and now easy child again. medications and maturity helped him. Waiting to see what happens with difficult child.

    His diagnosis? His therapist is sure he's bipolar and thinks he's also Reactive Attachment Disorder (RAD) with borderline tendencies. In the psychiatric hospital he got an AS diagnosis -- that makes sense to me from what I have observed, along with the bipolar. So he is what he is.

    I know the medications are a weird combo but the psychiatrist in the psychiatric hospital is good, and he explained them all to us.

    Jo, 54
    husband 59
    difficult child 15 (?????) Depakote, Seroquel XR, Cymbalta, Vyvanse, Trazodone, Melatonin, thyroid
    easy child 12, ADHD, Concerta
     
  2. TerryJ2

    TerryJ2 Well-Known Member

    Hi Barneysmom, so sorry to have to welcome you back. :( What trials you've been through!
    It sounds like your son is both Aspie and bipolar. How old was he when he was adopted? Do you know anything about his bparents?

    I'm glad you and your husband are going to counseling. It's not a total fix but it helps.
    I don't know that much about Wellbutrin, but I've got some experience with-Effexor, and it helps take the edge off, a major miracle when dealing with-a kid like that. Sigh.

    I'm sorry your other child went through a rough patch, but living with-a difficult child can have a huge influence on siblings. I've got my fingers crossed for him.

    What behavior strategies do you have in place? What works and what doesn't?

    Sorry for so many questions.

    Definitely, you have a home here, whether you lurk or not.

    Hugs.
     
  3. TerryJ2

    TerryJ2 Well-Known Member

    Oh, speaking of behavior strategies, we've learned that aside from our son's humungous gluten allergy, he's GOT to have enough sleep every night, or he is a total monster the next day. We are putting a stop to all sleepovers.
    Total routine is essential for both bipolar and Asperger's.
    Best of luck!
     
  4. susiestar

    susiestar Roll With It

    Welcome! I am so glad you came out to say Hi and join us!

    It sounds like your older difficult child is having a rough time, and sharing it liberally with the rest of the family. I know you have spoken with the doctor about the medicines, but it does seem like a pretty interesting mix.

    Have you read The Bipolar Child? Looked into possible sensory issues? Had difficult child tested by a neuropsychologist and/or a multidisciplinary evaluation? Sensory issues are usually treated in young children, but after I learned brushing therapy for my youngest I applied it to my older kids with wonderful results. It must be taught by an Occupational Therapist (OT) as you can cause some problems if you don't do it properly, but it involves NO additional medication and can make some really drastic differences.

    Has difficult child ever been through a medication wash? It would give you a chance to see what is "him" or the "disease/disorder" and what is side effects from the medications, or medication interactions.

    I am fascinated by the liberal use of stimulant and antidepressant medications. He is on a stimulant and TWO antidepressants, WOW! Has he ever gone just on the mood stabilizer and antipsychotic? Or just the mood stabilizer? Keep in mind it can take a couple of MONTHS to clear the medications out of his system AFTER he is titrated down. Then you have to titrate up to a therapeautic dose and after you are at that dose it take 6 to 8 weeks to get the full effect of the medications.

    Sadly there are very few docs who want to take the time to do this properly. Many docs don't even believe in SSRI/SNRI withdrawal! (let me tell you, it is VERY VERY real and is scary to go through).

    Those are just ideas to think about. If the medications are working together and he is getting better, then stick with them.

    Above ALL the ONLY rule you must NEVER EVER EVER break is this one:

    Trust your Mommy Instincts. If you have that gut feeling, or absolute knowledge that something is good or bad for your child then follow that feeling. Many of us here, esp me, have made truly huge mistakes when we ignored our instincts. I beleive those instincts are there for the survival of the species. We are hard-wired with them for a reason.

    I hope you stick around. I look forward to getting to know you.

    And of course, take whatever I babble about that you can use and ignore the rest. Never hard feelings, I promise!
     
  5. Fran

    Fran Former Site Owner

    Welcome. 15yr olds are difficult even in easy child world. If you trust your doctor, then you are ahead. difficult child's are tough and having an arsenal of tools to help you to help them is important. A good team is important. I can't fix difficult child by myself and rely on the professionals to fill in the blanks spots of my abilities.

    difficult child's wear families out. I love my difficult child but the wear and tear is awful in those growing up years. You are wise to get counseling. Try to make a life that is not difficult child based. Everyone in the family, including you deserves to have moments of peace. Hang in there and glad you joined our group.
     
  6. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Barneysmom,
    Just wanted to add in my welcome back. I do remember you! Glad you decided to come back out of lurkdom!
     
  7. totoro

    totoro Mom? What's a GFG?

    Just wanted to add a big welcome!
    Once stabile or borderline stabile we are finding our daughter K very receptive to therapies she would not respond to prior to this. We are also looking into much more advanced therapies!
    Which is exciting.
    I hope you can find stability soon and keep coming back for support and if you have questions for medications or therapies please ask. Lots here have done it all! :)
     
  8. barneysmom

    barneysmom Member

    Hi Terri,

    "Total routine is essential for both bipolar and Asperger's"

    This is what I am struggling with now. There's not much going on at our house. difficult child did say he did very well with the structure at the psychiatric hospital. Today I sketched out a routine with his input and he seemed completely disinterested in it. On top of that, routine is one of my personal challenges and I am working on that for myself.

    I am just getting to know my son as an Asperger's teen. My husband of 29 years has AS (we figured this out two years ago), and it has been a huge challenge for him to parent difficult child, but he has made some big accommodations (as we have done for him, knowing his neurology).

    Any suggestions on routine? Last night I started writing out my own routine or I will sink.

    difficult child and easy child were 6 1/2 mos. and 8 1/2 mos, respectively when adopted from Guatemala. We don't have any info about the birthparents.

    Jo (trying to add sig line -- I'll figure it out soon)
     
    Last edited: Jun 29, 2009
  9. TerryJ2

    TerryJ2 Well-Known Member

    Hi Jo,
    Oh, I hear you! As an artist and writer whose energy high hits between 4 p.m. and midnight, I've had to make huge accommodations for my family. I've always gotten up around 7 or 8 a.m., but with-o kids, you can get up and start working immediately doing stuff around the house.
    With kids, everything gets put on hold because their needs come first.
    Also, my husband is a workaholic (getting better, though) and I didn't have help from him for a long time.
    One thing I do, is decide b4 I go to bed whether or not to shower at night or in the a.m. That little routine can change my whole schedule.
    I also figure out whether there is enough cereal and juice for the a.m, and if not, what I may have to cook for breakfast.
    I also go through my difficult child's backpack when he gets home from school. I'm horrid at remembering that sort of thing and he takes full advantage of it!
    We have a calendar on the kitchen door that is a wipe-off type and we make sure that everyone's schedules are on it.

    In regard to mapping out a schedule, as an Aspie, your son will not be interested in helping you do much of anything, even if it is in his own best interest. He is interested only in what he's interested in. Period. In my son's case, it's video games/PS2, and sports.
    What does your son like to do?
    It sounds manipulative, but you have to use whatever he's interested in as a tool to get him to do other things. Some day, when he's middle aged, he'll "get it" but not right now. He's still learning.

    What sort of thyroid medications is he on? Is he low or high?

    It's interesting that he has attachment issues ... I wonder how much of that is Aspie and how much is really attachment. Statistically, if kids are adopted under 6 mo's of age, they do pretty well.
    I view my son's attitude and emotions sort of like a cat. He comes to me when HE feels like it. It doesn't occur to him to apologize if he's hurt me (although he is learning, for ex., when he laughed at me when I smacked my head on a cupboard door, and I roared at him that he was insensitive, so the next time I got hurt, he asked if I was okay, more because he didn't want to get yelled at. But as I said, he's learning), or to hug me because I need it. He does things because he's in the mood. So in regard to attachment, if he doesn't say he loves you, I wouldn't worry about it. I would pay more attention to whether he hangs on you in a strange situation, because you are his protector, for example.

    Do you talk about it in therapy? Has he asked about his bmom?

    My son did very well with-the routine at the psychiatric hospital, too, but you know, that's not "real life," LOL! One thing he hates is when I call across the room to him, especially if it's a command for a chore, even in a nice voice. He flips out like a maniac. When I write down the same exact thing and hand it to him, he's fine.
    It's taken me yrs to learn these things!

    Also, one thing my son does is call everyone a liar, incl. his best friend. If I say I'm going to do XYZ, and change one little thing, he calls me a liar. I have to be very careful to explain to him that I am not making any promises, just that I am making plans and hope that they don't fall through. I also used expressions like, "It's not carved in stone, so don't hold me to it," which, unbeknownst to me, meant nothing to him ... just when I thought I was making progress. I catch myself every day.

    It's a lot of work.

    Amazing that your husband is Aspie. Wow. Quite a revelation.
     
  10. Hound dog

    Hound dog Nana's are Beautiful

    Hi Jo and Welcome out of lurkdom :)

    Routine is essential. My Pervasive Developmental Disorder (PDD) son got up at the same time each day, ate meals at the same time, bathed at the same time, of course school was at the same time, and bedtime was at the same time. Chores were spaced in there too.

    The thing with routine is......even if something happens and you can't do it on time, it is still very helpfult to do it in order. Or at least it was for my kids. Cuz I found the routine helped his sibs as much as it did him. Routine is soothing in a world that can be very abbrasive and confusing for someone with autism.

    Glad you came out and let us get to know you. :D

    Sounds to me like you've got warrior Mom down pretty darn well.

    Hugs
     
  11. barneysmom

    barneysmom Member

    Thank you all for your welcomes and wisdom. I feel so relieved after hearing from all of you.

    Daisy, thanks for your thoughts about routine. We can at least get a makeshift routine into place.

    Fran, thanks for your advice about making a life that is not difficult child-based. I was thinking about this and realized that I have been obsessing about difficult child lately (and feeling really enraged). I know this is a bad sign for a parent. I have a lot of good coping skills but sometimes it's easier to just slip into the obsessing mode.

    Sharon, I remember you too. Good to talk to you again.

    Susie, I have the BiPolar (BP) Child. I'm going to have to haul it out and read it. Right after I bought it, our therapist (at the time) told us that difficult child was most certainly not BiPolar (BP). Said he wasn't AS either -- I asked.

    Regarding the medications -- it's almost embarrassing to post them in the sig line! However my mommy gut does trust this doctor. He left him on the medications he was on, and added Cymbalta and Seroquel while in psychiatric hospital. He expounded on his theory about Cymbalta balancing the norepi and the Seroquel boosting the Cymbalta. My husband's eyes were glazed over.

    totoro, I would like to hear about the therapies you are looking into for your K. Like all of you, I'm an avid researcher of anything that will help my son.

    Hugs to you guys

    Hope my sig shows up.
     
  12. barneysmom

    barneysmom Member

    Terry, I've been giving the AS vs. attachment issus a lot of thought. I'm glad you brought that up. I learned a ton about AS when I realized that was what was going on with my husband. I realize that the AS teen will be a whole different animal.

    Anyway, when I think of my son as AS, so much of my anger and anxiety towards him eases (I know that's not the point of it all, but making some kind of sense of it is a relief). It's just something I'm more familiar with. It's interesting when he had his mood swing last Feb. and his behavior changed, he said "I can't be that person anymore -- I wish I could. I only like myself when I'm that person." Meaning the well-behaved, likable, personable, smart, funny kid that all the teachers loved. He said "I'm not really that kid."

    It was like he had deliberately put that persona together, but could only keep up with it so long before he collapsed, because neurologically that's not who he is.

    He had been pretty verbally abusive and depressed, sometimes manic with the tool obsession, since Feb, culminating in psychiatric hospital early June.

    by the way his thyroid was low (TSH was elevated, indicated thyroid gland not producing enough hormone). psychiatrist said he sees this often in these kids. You guys here probably know that already, I didn't though, could account for alot of the mood stuff.

    He's so dramatic and manipulative sometimes though -- I'm not sure that's in the AS kid makeup. Is it? He's extra good at splitting me and husband, too.

    Thanks Terry and hugs, it's good to talk to other moms of kids with AS. It's a relief.
     
  13. totoro

    totoro Mom? What's a GFG?

    The BiPolar (BP) side thrives on schedule as well. My daughter needs almost a strict schedule, or she feels out of control. (She is not on the spectrum) Because of her NonVerbal Learning Disorder (NVLD) and her sensory issues as well as her BiPolar (BP) all of it combined, no schedule causes her to destabilize.

    She needs to know what is going to happen next, this is very common for the mentally ill, or else it will trigger anxiety and obsessive like reactions.
    Right now because we are getting ready to travel which is not our usual schedule, this is triggering worsening or my daughter's hallucinations and cycling.

    Schedules, structure, routine, guidelines etc. are important for most kids with issues.

    My husband hates it!!! LOL
    I love it because I have BiPolar (BP) as well... although it is hard when you are having an episode.
    The structure also means diet. I don't know if that was mentioned?
    For us it is sleep, diet, exercise first and then all of the other stuff.
    Rules, routine...
    the only thing we are really lax on right now is homework. not worth it.
     
  14. barneysmom

    barneysmom Member

    Hi totoro,

    "No structure causes her to destabilize"

    I think this is what's happening to my son. He's getting depressed again.

    Do you have any suggestions about how to put structure into the summer days for a 15 yr old boy? I seem to be clueless. I wrote out a brief schedule for difficult child today. It addresses basic hygiene, picking up after meals, a few scheduled tasks, and bedtime.

    In a week we're going to send him to a computer animation camp -- I didn't think he'd be able to make it because he's so irritable, but I see this structure is what he needs.

    He doesn't have any friends except those from his very small school. His interests are modeling on the computer, which he doesn't get to do unless he participates in family activities (like chores -- cutting lawn). He is not physical -- sensory-wise he is understimulated, under-reactive or reacts with extreme irritation. Gets no exercise at all (refuses to cut grass).

    Regarding diet -- his choices are poor. I'm stocking up the fridge with healthy food and removing the carbs he longs to graze on.

    He does get enough sleep.

    Thanks totoro
     
  15. TerryJ2

    TerryJ2 Well-Known Member

    Jo, interesting about seeing the thyroid issue crop up so often ... do you mean in bipolar kids or Aspies? Or both?
    We've had my son's checked, but we still keep an eye on it, just in case.

    I gave away all of our wheat products to friends and coworkers.
    Our easy child just bought a bunch of cheese and wheat stuff to eat while difficult child is at camp. She's going to have to get rid of it all on Thur eve. She has a lock on her bedroom door but never remembers to lock it, so I don't know if I can allow her to store things in there.

    Sigh.
     
  16. susiestar

    susiestar Roll With It

    hi Jo! Your sig worked great.

    I HATE it when people say "It just CANNOT be" whatever diagnosis. I find it closes them to potential avenues of help. In my case, reading the BiPolar (BP) child gave me a lot of insight and helped me decide the docs were wrong when they considered BiPolar (BP) for Wiz.

    My mom spent some time in London the year we were first getting Wiz diagnosed. She knew I had a rough time finding books on Aspergers (it was over 10 years ago and not much was published here in the US that I could find) but she just happened to land in a hotel that had a large conference for teachers going on. She found an entire table of books on aspergers in the lobby. Some of it was aimed solely on teachers, some not. One of the books had a 3 page summary of traits.

    When mom got home and we looked through that summary together my father had every single one of the listed traits!!! Wiz didn't have that many, LOL. Part of what we did to help Wiz was to look at how my dad was raised. He was considered odd, but never ever left out because all his playmates and most of his classmates were cousins or family friends (large Catholic families do have their benefits, LOL). All the relatives lived with-in a mile of each other.

    As long as you trust the doctor then do what seems to work. I just wanted to let you know that some of the ADULTS here say that until they were off of all antidepressant medications and stimulants they couldn't possibly be stable. One member was on lexapro for years and finally ended up on mood stabilizers and was truly ASTONISHED at the difference. I knew her before and after the change and it was incredible. Where she seemed to be doing well on the lexapro, she is just AMAZING now.

    I am glad that you have a husband with Aspergers because it will let you see that a real future is possible. I was blessed because I could see my dad and that he functioned in the adult world very well. It made me feel that there really WAS help for my son.

    Later, when Wiz got violent again he went to live with my parents. My dad took over a lot of his care, including working out all that anger. Gpa was ten times as stubborn as my very stubborn difficult child, so it was a good fit.

    Look for what works for your husband. Then try to adapt it for your son. As for routines, I HATE them. My mom lives by a timer. Drives me crazy. It did work pretty well for Wiz at times. I did a lot of "we will go to do X at Y time IF you have gotten A and B done by Z time". I also used community programs that happened at certain times to help me with scheduling.

    Many hugs.
     
  17. totoro

    totoro Mom? What's a GFG?

    I don't know about a 15 yo boy and I am kind of thankful! LOL
    But one thing I think applies to most of our kids or at least applies to K is that if something truly helps her. Meaning keeps her stable, or keeps her happy.
    Then I never use this as a punishment. I will let her do this thing whenever she wants, like her computer time or swimming... for example.
    For us though K is not a manipulative child, so when she is screaming that she will not brush her teeth or will not stop doing something, it is usually because she is overstimmed or has not eaten or needs to change her activity or something is going on in her head and she is unable to verbalize to us what chaos or feeling is going on in there.
    I think whether were talking BiPolar (BP) or Autism Spectrum this can happen. The overwhelming feelings can cause them to lose it.
    So if she has something that can help her keep it together, I am more than willing to let her have her this.

    For us though she is only "entertained" for short periods of time. LOL so I am more than happy if she can find something!

    I think it depends on his maturity level? K is very immature. So I have to go step by step and then give her reminders.
    She gets distracted by more than 2 step directions, so I have to watch it.
    Like Terry said I also have to watch my words, she has a very high IQ so she over thinks everything I say and takes it literally.
    I have to walk her through the schedule even though she anticipates it and her internal clock tells her what to expect. But she needs me to still direct her on almost everything. Even the teeth most times.

    We do a lot of museums and mellow hikes. Swimming has been our saving grace, it is non-competitive and safe for K. She is in adaptive PE at school, but swimming for her is calming and fun.
    I take her and explore nature a lot, snakes, bugs etc... we bring the binoculars and camera.
    I have to find the joy in the things that she finds joy in, so that she will have a connection with someone. Yesterday we spent 2 hours off and on playing legos.
    Luckily I honestly do enjoy them. :)
    Also she is not high functioning enough to be away from us for very long yet.

    I wish I knew more about a 15 yo boy... how long is the camp? Is he excited about it?
    I think if this is something that he can handle, that it could be a tremendous boost to self esteem and his overall person. What a cool thing to get to do!
    I really hope he can handle it and that he has a great experience.
    Is the camp aware of his issues?
    It really sounds like you are doing a great job!
     
  18. barneysmom

    barneysmom Member

    Terry, regarding that thyroid question, I spent a fair amount of time reading about it, and thyroid is mentioned on AS websites and and also in relation to general psychiatric issues. I found the sheet the psychiatrist used to explain the medications, and I think he said the thyroid gland secrets more hormone in times of stress, and consequently depletes itself, which results in an increase in TSH. The same is true with cortisol, which also unfortunately rises as a stress response.

    I can sense the cortisol rise in myself after years of chronic stress-- it depletes the adrenals. I think my adrenals are shot (I take supps though -- when I remember).

    Anyhow the thyroid thing is complicated and there are lots of sites which say get a free T4 which we'll be following up with the pediatrician.
     
  19. TerryJ2

    TerryJ2 Well-Known Member

    Interesting. Thank you!
     
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