Such a struggle-need ideas...

Discussion in 'General Parenting' started by oceans, Jan 29, 2007.

  1. oceans

    oceans New Member

    I have not been around for awhile. Nothing has changed. We keep trying medications and none of them work. We finally talked the psychiatrist into adding Lamictal. Antidepressants have done nothing at all, and sometimes made the situation worse.

    We went in for an interview at TEACCH to see if we could get an evaluation for high functioning autism. They said they will most likely invite us back, but the waiting list is about 8 months long.

    We got difficult child into a therapeutic school that his psychiatrist is involved in and he can moniter him there. It is small with a ratio of 1:6. They staff therapists and have therapy sessions. They have behavioral supports.

    We went there today for the interview, and he is to start tomorrow.

    All these appointments have been an awful struggle just to get him to even go. Now he is saying that he is not going to this school. There is not other choice really. He is not attending to the school he has been in and has been failing everything.

    Does anyone have advice on how to get him to go. He is 15 and weighs almost 200 lbs. We cannot pick him up. He also says that he will not go back to TEACCH again, and if they invite us for an evaluation we need to go. We need to find out what is really wrong and going on......

    I keep hoping that there will be some medications that will help enough so that it would not be such a struggle. I am soooooo tired!

    I need ideas on how to get him to go to the therapeutic to participate in the things he needs to do in order to get better....
  2. Marguerite

    Marguerite Active Member

    The depression can make it REALLY hard to get them to do anything. They withdraw, shut down and it becomes a vicious circle, almost like Japan's hikikomori cases. I'll keep my thinking cap on for you, but somehow you have to get him outside and exercising. Can you get him to go out for a walk with you, late at night when there's nobody else around? Outside and even mild exercise can make a huge difference.

    Also, he depends on you for things still. You do have some leverage. I wouldn't mention it right now, see if you can get him out of the house for half an hour a day, minimum, but we also set requirements on our older kids - participate and get a life, or we won't feed, clothe and house you. Even volunteer work is better than nothing. Computer games won't work if household power is shut off. Volunteering at an old folks' home is good - if he can play chess or scrabble with some of the inmates it raises their quality of life and should make him feel a bit more worthwhile too.

    We had difficult child 1 volunteering at a zoo. He spent 1 day a week for 18 months shovelling manure in all weathers, and not only did the exercise do him good, he enjoyed the work because it was different (different kinds of manure, anyway!).

    Depression can stand alone or be a big part of High-Functioning Autism (HFA). It can be crippling. Letting them stay indoors can lead to increasing and eventually extreme isolation. You need to break the cycle.

    If he's refusing to go to school, how does he propose to get an education? Are there alternatives he's prepared to try? We have alternatives here, they're often a much better choice for kids like this. It's also the same route as adult education/mature age students, so they're in with other classmates who they're more likely to relate to.

  3. smallworld

    smallworld Moderator

    Oceans, the therapeutic school sounds like it's a step in the right direction. Does it provide transportation? Does it send out a staff member to your house if difficult child decides not to go? If not, can your husband get difficult child to go? I hate to admit this, but my difficult child 1 responds much more to the authority of my husband than he does to me. Our psychiatrist says that is fairly common to boys this age. If that doesn't work, you could take away all privileges, such as TV, computer, etc. One day when husband was away on a business trip, difficult child 1 decided he wasn't going to school, and I couldn't make him. I told him if he stayed home, he couldn't have any screen time; he could just stay home and read books. By 2 pm that wore really thin, and he decided to go to school the next day. He hasn't skipped school since. I'm not sure I'd worry that much about the TEACCH appointment at this point since it may be months away. With new medications and a therapeutic environment, he may buy into the need for the evaluation by then.

    What dose Lamictal is your difficult child on? Has it made any difference at all? We saw slight improvement early on, and both difficult children' moods have improved as they've reached higher levels. But Lamictal on its own has not lifted their depression entirely, and we've been adding in small doses of ADs. difficult child 2 has been on Lexapro (7.5 mg) since December and doing well without being activated. difficult child 1 will start Lexapro next weekend.

    You have a lot on your plate. Hope things improve soon.
  4. everywoman

    everywoman Active Member

    "Does anyone have advice on how to get him to go."

    Honestly, with mine, I had to get him to buy into whatever it was. He had to have a personal reason for wanting to go---a reward, a goal, something to get him invested. At one point it was a girl he liked and he got to see. Other times it was if he went for X # of weeks I'd buy him a pair of shoes. That made it easier--but even then there were struggles, which is why he is 1 1/2 credits short of a diploma today!
  5. Marguerite

    Marguerite Active Member

    We also have a rule - "School work during school hours". So if the kid stayed home, even if he said he was sick, unless he was actually asleep in bed he had to do something that passed for schoolwork. Even educational computer software was acceptable. The end result - difficult child 3 began to do a lot better at home that he had been at school. Hmm... and I felt what he was doing at home was only stopgap. So we arranged for difficult child 3 to be permanently at home. He still does school work during school hours, but is at last doing well. However, we also have to schedule time out of the house and exercising.

  6. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Oceans...I dont suppose you can get a community support person to come help you get him to school can you? Does he get medicaid? Can you call mental health and ask if he would qualify for this service?

    Just a thought.
  7. OTE

    OTE Active Member

    Glad he got into the school. And TEACCH will come through eventually. By most stds 8 mo isn't a long waiting list in the Pervasive Developmental Disorder (PDD) evaluation world.

    As the others said, there's really just carrots and sticks. I know you're using those just to get him out of bed some days, but it's all you've got. His computer is his only passion so use it. If you have to, lock all the other rooms and take everything, sheets, pillows, etc off his bed... as long as the heat is on it's not abuse or neglect. Being uncomfortable may be the only way to motivate him right now. I know he whines, moans and drives you insane if you do such a thing, but lock yourselves in your rooms and let him whine to himself. Put in earplugs to walk around the house if you have to. But don't let him get the better of you and don't cave in. This is a battle you need to win.

    Remember that it takes 2 to argue. If one doesn't engage there's no argument. I can retreat and he can pound on my door but I won't answer. If he damages my door pounding then he gets a consequence for property damage. And I tell him the consequence before I close my door.
  8. oceans

    oceans New Member

    Thank you for the help.
    Marguerite - The problem is that I can't seem to get him out of bed, much less out of the house on most days. He sometimes sleeps 16-20 hrs/day, and I can't seem to get him woken up and out of bed. Once in a great while he will come out to the store with me, but I can't seem to get him to exercise or to do much. I guess I will need to use the computer for leverage....that he needs to do things first before he gets on. Sometimes he can really wait things out though.

    Smallworld- The school does provide transportation. There is a small bus that comes right to our house and drops him off at the end of the day. They do not send someone out if he will not go. He has not started Lamictal yet. The psychiatrist would not try it until he was on an AD again. He had stopped taking his Wellbutrin. It was not working and he said it made him feel funny, so he had been off medications for about a week. He just started taking an AD again and we just increased the dose this evening. He does not want to add the Lamictal until he is near the end of the bottle. He has just been on it for 11 days and has enough for a month. He has not tried Lexapro yet. That is another one the psychiatrist mentioned, but right now he is back on Zoloft. Zoloft never did him any good alone, but he did not have bad reactions to it like the other AD's he had tried.

    Janet- He is not on Medicaid, so I don't think we can get those kind of resources. He sure could use those kind though!!!

    OTE- thank you for the input. I hear what you are saying. It sometimes gets to the point of being overwhelming, but it is good that we have gotten this far. If we can get him to go to the school, I think there is a chance it will help to change things around!

    So- I guess it is having to use the computer as a tool in a wise way, and continue to work on one step at a time. The most important is to get him to go to the school, and next we will be up against all the other problems that come with school, but there will be much more support at this school.

    Perhaps once we start the Lamictal things will improve.....

    Sometimes this feels like it is a forever battle and I get sooooo tired of it all!!
  9. OTE

    OTE Active Member

    I don't blame you at all for being frustrated. He puts you there every moment of every day. But remember that he can't put you in a place that you won't go.... any more than you can get him out of bed if he doesn't want to. If you refuse to play his game then it's over for him. He will have to get out of bed to make food for himself. He will have to get out of bed to do his own laundry, get money to pay for his own internet connection and so forth. Right now you're stuck between how much is enabling him vs supporting him. And that's always tough to figure out for any of us. Of course, maybe not so much for me because I gave up years ago. Mine gets nothing from me period. I subscribe to Fran's philosophy.. "do to get".
  10. BTDT

    BTDT New Member

    Dear Oceans,

    I am so with OTE. Sounds to me as if you're at least dealing with ODD. If not also depression. (However, a child with ADHD that cannot concentrate in school, especially a bright one, will get depressed for sure, if he's not getting prescribed medication for ADHD.)

    Now let's see, which would I rather do, go to school and fail, or stay home, sleep all day, and stay on the computer all night? Hmmmmm. You do the math.

    This is what I recommend... The computer disappears mysteriously....And put a deadbolt lock on the door to your room, or perhaps even the house.

    Say this in short sentences. No expression on your face or in your voice whatsoever. No hand gestures. Standing up straight, preferably do this when he's sitting down, not laying down.

    And explain patiently that you... had to take the computer to the principal's office for safekeeping (and take it there - or take it to the computer shop, but not in your house). You didn't want to, but he really left you no choice. Because it's against the law to keep him outta school and you don't want to get in trouble with the law. So you just have to prove to the principal that you're not letting him stay home all day and night on the computer.

    And that is why, being the benevolent person that you are, you will make this deal, and it's great as all get out for him because...

    When you see him attend ten straight days of school, 100% attendance and compliance, you personally will get in your car and drive all the way across town to ask the principal to return the computer. Period.

    And, as an extra bonus, in addition to the attendance/compliance - if he wants the computer back two times sooner - for every day that you also hear no complaining/begging for the computer AND you see a squeaky clean boy freshly scrubbed with soap, you will mark one day off "no computer time". See how that works. You get a full five days no matter what. For every time he demands the computer, of course that adds one day. Sorry, but you have no choice.

    Either way, whatever he decide to do, it's totally up to him, you're just telling him what you had to do, just so he understands. So he can choose.

    HA! That oughtta fry his pies. And I don't know the law where you live, but I may also say that you're so afraid of getting a ticket for his truancy, that the officers have left you no choice but to call the truant officers the next time he doesn't get on that bus.Still his choice (but you've heard some strange things happening down at that backwoods jail -tee-heehee)

    Thing is, of course, if he chooses to miss school, the computer will just land right back in the principal's office but this time of course it will have to be for 20 days because obviously ten days wasn't long enough.

    If you don't have the guts to do this, dear Oceans, please prepare for buckets more tears. And please wave goodbye to him getting better on his own. Those rivers of tears are what it feels like when you know it's getting worse. And there are oceans more ahead.

    I'm sorry to give you this realistic news. You don't have to be stronger, dear Aqua, just play smarter. Always think of his payoff. The naive, "sorry I didn't have any choice approach" is best for a 15 year old with muscles... Until you can learn how to turn the tables here.

    Next question is this. Is he being medicated for ADHD? And if not, how exactly do you expect him to learn in school? Please hear my humble opinion. If he has ADHD, he can't. He can't. He just plain can't.

    Rivuletly yours...I'm truly sorry for your suffering. Not being flippant, only brutally realistic, but you don't know me from Adam, and that really doesn't matter, cause all that really matters is that you know in your heart that you've had enough, and this is probably the thing to do, if only you could conjure up a bit more gumption (and you can my friend, you have it in you).

    So print this out and practice it in front of a mirror until you have every word, every comeback downpat. And get that computer outta there, even if you must stage a friend as a repairman that must fix the electricity in his room - get it outta there.

    And these little fingers are now typed down to the bone for one reason only, (not to prove anything to anyone, or to convert anyone from what's working for them so terrifically,) But because you asked so sweetly and sincerely amidst all those hurting tears. And I remember how it feels to be humiliated and verbally tortured by a child you always dreamed for gone terribly bad.

    And because this is a promise: I've...

    been there done that exactly...

    and it worked better than you can possibly imagine. You can do this, Sweetie.
  11. pepperidge

    pepperidge New Member

    been there done that certainly has one strategy.

    I guess my question is if this child is severely depressed and anxious, would the kind of strategy that been there done that is advocating make it worse and possibly make the child suicidal? I ask, because when my son was first starting to rage (he was very depressed), we tried the tough love approach out of ignorance and got an even more totally depressed child.

    I don't know the right answer, but it is something to think about.
  12. smallworld

    smallworld Moderator

    And I would also add that in many kids with mood disorders, ADHD is the least of their problems, if they even have it at all (anxiety, for example, can be cause for inattention). Furthermore, ADHD medications (stimulants as well as Strattera) can affect mood negatively and worsen the problem rather than make it better.
  13. Marguerite

    Marguerite Active Member

    It's a tough one. But I do feel that at least a certain focus on "do to get" may be a start.

    Look up hikikomori. It's peculiarly Japanese but sounds a lot like this. Maybe different reasons, maybe not. But what happens in Japan - the parents, especially the mothers, inadvertently enable them. It's connected to culture and other things, added to lack of community support and understanding. Extreme lack of understanding. And whenever I'm fretting about how much time my son spends isolating himself from the world - it reminds me that things could be far worse. and I then remind HIM of that also.

    I'm not saying your son is hikikomori, only that checking it out could be sufficiently lateral to give you some ideas.

    It's a fascinating topic. It was only after I began to read up about it that I recalled, we actually met a Japanese youth who was rapidly heading in that direction. His parents had sent him on a two week exchange to Australia, to 'snap him out of it'. It failed. I was told that when he got back to Japan he went into his bedroom and stayed there. For years.

    'Tis a puzzlement.

    At least with your son, it's much more socially acceptable to get treatment, in the US. Especially treatment for depression. But I do think you're right, to be planning to curtain computer access as well as revisit medication and assessment.

  14. BTDT

    BTDT New Member

    I just realized that I mixed up the squeaky clean part of this response with another post. Sorry about that.

    Do you really think this is tough love?

    And on drugs... that would be tragic indeed if someone could not take ADHD medications if they had ADHD. I never even thought about that conflict. That's horrible.

    And so many kids with ADHD have several other things. What an awful ordeal.
  15. pepperidge

    pepperidge New Member

    been there done that -- not sure I understood your last post very well (the squeaky clean part?) how about sharing your experiences in an intro post so we can appreciate where you're coming from better. If I missed it, I'm sorry!

    Oceans--ADs didn't do anything for my child's school refusual. Lamictal has helped a lot however.
  16. BTDT

    BTDT New Member

    On hikikomori...

    Sounds exactly like bipolar to me. At least half of all the bipolar men I've known, and those that were my friends' fathers and stepfathers. They stayed in their rooms most of their time. Held court in there. Of course there was a woman on hand to facilitate this. And of course she had plenty of alcohol on hand, cause these men were also bad alcoholics.

    I seriously doubt that something as exotic as bipolar wouldn't also be given an exotic name by the Japanese. And that's a good name for it, huh? Although perhaps all these folks have agoraphobia.

    Don't claim to know much about either, only that I've have friends with both.

    I wonder how ofter the two are co-morbid. Feel really sorry for families struggling with that.

    been there done that
  17. Marguerite

    Marguerite Active Member

    I feel we need to be careful to not oversimplify anything. Just as we don't diagnose on this site (because even if we were fully qualified health professionals - and some of us are) it is simply inappropriate to do this under these circumstances. We are about supporting one another and informing ourselves and each other in an atmosphere of mutual support.

    I could generalise by claiming that I can always spot an Aspie or autistic kid from across the room (or schoolyard) but not only would this be wrong, but there is no way to scientifically test this. I might claim, "That kid over there is a classic Aspie!" and yet that child may not have a diagnosis. And my response to that could be, "Well, he should be assessed, because I KNOW he's got Asperger's." This logic is unanswerable because it is circular and cannot be substantiated.

    Who knows? I could be close to the mark - but it's not relevant. All I can discuss is what I know and even that I have to temper with, "according to my opinion," or if I've been doing more research, "according to [xxx reference]." That's why I often explain things in terms of what worked for us, if the problem being dealt with sound sufficiently similar for our situation to be POSSIBLY relevant.

    There are many problems that bring us to this board. Some of them are unique to our own children; some of them are remarkably common on this site. By sharing ideas, thoughts, suggestions we are increasing our global knowledge and resources on a topic. Sometimes the suggestions are wide of the mark; sometimes they're not.

    People often post links to articles and research papers. We discuss them. sometimes we agree, sometimes we don't. But we do listen and we do discuss - it's how we all continue to learn.

    But one thing is for sure - because every child is unique, chances are their problems are similarly complex and unique. If the answers were so simple and easy, the problem would have been identified and resolved long ago. Many of us on this site have long ago learned that the answers are generally more complex than we've been told to date; rely a lot more on our own spirit as Warrior Parents to get out there and keep working on our kids; and that our kids are works in progress.

    Whether a condition is incurable or not; whether A always follows B and only B - not relevant and generally not accurate, because such generalisations have long ago been ruled out as unlikely.

    I tend to avoid discussing bipolar except in the most general terms, because I know my limitations on the subject. I can speak about autism because we live with it. However, I know that there is so much more for me to learn. What I AM learning is that my previous knowledge, and perhaps a lot of my current knowledge, is always suspect. The books are still being written. In many cases, we are contributing to the world-wide pool of knowledge.

    The news is improving, however. Conditions once labelled as permanent, unchangeable and incurable are now proving the lie to THESE generalisations. A lot of medical conditions are being redefined; parameters are changing and as a result, diagnoses are often revised.

    Nothing is certain.

    However, what we see, what we live with and what we want to change - these are what our daily lives are made of. For each of us it can be a solitary struggle, but our collective support is what helps us make great strides indeed.

    Or, to summarise - there is more than one way to skin a cat.

  18. oceans

    oceans New Member

    I think it is a fine balance about computer limitations. Sometimes it works well. Other times he says that he does not care and goes to sleep for 20 hrs. He can not care for a good week and sleep most of the week away. Eventually he will want the computer back, but it might not be quick enough to obtain immediate results. I think this will take lots of time to get some results. I know there needs to be consistency, and that can be the difficult part.

    been there done that- he has already tried many stimulants. They did not help him. They actually made things worse in the long run, so we are avoiding those at this time.
  19. Allan-Matlem

    Allan-Matlem Active Member

    Sorry about the situation. You know your kid so you should have a good idea how he would react to using computer time as leverage. It is possible you could get into an ugly power struggle and nobody wins. The only consequence I would go for - write him an empathetic letter that you are prepared to do everything to help have a constructive life that offers him a future , get all the help he needs as long as he is willing to cooperate , if not you need to let some else try , give up your guardian rights for his and your future , maybe a young adult , therapist could talk to him . He seems depressed etc , but he needs to want to get out of the deep hole he is in. The right medication would help , but he needs to admit to the problem and ask for help.
    Not easy Sending prayers and positive thoughts in your direction
  20. oceans

    oceans New Member

    Well- He did not go today. He woke up, showered, and dressed. He then sat on the couch and said he was not going to go. We both spoke with him and stayed late and could not get him to go. I needed to leave for work. husband stayed and tried to get him to go and he would not budge.

    We had an appointment with the therapist tonight, and he said there was not option about going. The choice we were to give him was that he could go on his own, or with one or both of us, of we call the Program Director and she comes over as well. She also called us and said that if he refused tomorrow that to call her and she would come over.

    The bus called and it starts tomorrow.

    If none of that gets him there, we have no options but to take away more of his things.

    It will be interesting to see what happens in the morning. We have decided that we will be late for work and make this happen.

    therapist says that if we miss this opening in the therapeutic school, that we are in deep trouble on what to do next and we know that!!!