Struggling to contain my frustration

Arrrrgghhhhh! For some reason, this week, my son has decided to ramp up the oppositional behaviours. He’s throwing pencils away (albeit a LOT less violently than he used to!) and closing his books and refusing to do his school work. 

Now, I’ve trained myself reasonably well to deal with that sort of behaviour. I take a deep breath and keep composed because let me tell you for some reason the throwing of the pencils really, really, REALLY annoys me! I feel like just screaming at him every time he does it! That and the eraser. Drives me NUTS!!!!!

The other really frustrating thing is that we’ve been working through a practice year 2 maths book because although he was moving on to slightly harder stuff, I just felt that he didn’t really quite get it yet. So, the book basically goes through addition and subtraction with numbers 1 through to 20. The basics of fractions and multiplication and counting up to 100. He can do all this stuff, as he proves each day when he does it. However, every single day when I open the book and set it in front of him, he just says, 

“I can’t do subtraction! Subtraction facts for number 12?! I can’t do that! I don’t have 12 fingers!” Then I’ll work on him a bit until he settles down. This involves him hiding under the table, throwing pencils (grrr), and shouting that he’s not doing it no matter what I do or say. Eventually he realises that I’m not going to give up and either I’ll set a timer which counts how much extra maths he’ll have to do in comparison to how much complaining he’s doing, or I’ll be giving him the silent treatment so he knows that I’m not interested in all the avoidance he’s displaying. He settles down, does the work (usually getting it all correct and completing two pages in less than 15 minutes), and it’s all good. 

Then the next day, he repeats the entire procedure again!!! Each day I can’t believe that he’s doing it again. The same refusal, the same complaint. Like I said, I’ve trained myself fairly well to deal with all this kindly and patiently, however, it’s really starting to wear on me two weeks down the track! This of course all requires a large amount of my time and energy and patience, and I’m finding it a bit hard to stay awake in the afternoons!

Add to this the new eating plan I am trying to implement to counteract the weight gain caused by his medication, and we are all a little tired and grumpy!

We eat pretty well, with almost everything being home made, including most snacks and treats, but I think we’ve just been eating a little too much. My son is hungry all the time with the medication and it causes him to crave sugar and carbs (really useful side effect for a medication you give to people with mental illness right?!). Anyway, I’m ramping up the low GI, proteins and dairy, as well as reducing his portion sizes considerably. He’s not fat yet, but the rate at which he’s putting weight on is going to be come a problem for him soon. He already notices that when he sits down, his belly has a little roll that sits above his pants, and he hates it, because it makes his pants dig into him. I bought bigger pants, but he hates it all the same. This is a kid who was used to having a six pack previously, so I guess I understand where he’s coming from. Extra exercise and a good diet I am hoping will work, if not, I’m going to try a medication break to see how much he still needs it. 

That’s the other thing I’m worried about. His Ritalin doesn’t seem to be working as well as it used to, and I suspect that he might need a higher dose now. There is also the possibility that his Risperdal dose needs increasing and that’s why we are starting to see his angry reactions back again. I hate that thought. I managed to accept the medications initially because the doses were so very low, and of course because they were really effective. If we have to increase the doses, I’m going to struggle with that. It will mean more meds around in his body, and possibly the side effects might increase too. That will mean more weight gain, or who knows what else?

Sigh, it’s an ongoing tale, that needs all the pieces to be working in unison all the time in order to get any ‘normalcy’. If anything drops the ball (parenting, meds, outside stresses), he kind of relapses. He doesn’t regress though so I guess I just have to keep at it and make sure we do it all for as long as we need to in order to give him a happy life. 

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29 Responses to Struggling to contain my frustration

  1. Gede Prama says:

    Well written. May peace be with you :)

  2. JudgeRoy says:

    I’m sorry thing have been so hard lately and that the medication isn’t being as effective. What I did was take weekends off taking my Ritalin and when I took the dose again the medication just stayed just as effective. My mum thought that was a bad idea though. I just don’t think the meds were right for me to begin with. You probably might not even be able to take a break if his symptoms are that severe.You probably couldn’t do such a thing with Risperdal.
    Does he do revision? When I went several or so weeks without learning a certain subject and had to do revision as they called it, if I got a good mark it would make me feel more confident that I could do the work and remember it. But I know, I shouldn’t really offer advice.
    I still have doubts about doing something as well, like taking photographs. People would think I’m crazy for saying that but I get a lot of nerves about having to take photos of bands and I’ve gone 3 months without taking any photos of them and I’ve just got no confidence in myself. I usually get a lot of praise from people about my photography.
    I’ve had a bad week too and I don’t think after all the stress from anxiety and restless sleep that I would want to do school work too. I even bought some chamomile tea to calm down. I haven’t drunk any yet. It’s there if I need it though.
    Good luck with the diet and exercise regime too.

  3. KL says:

    Thanks Shanti. If you have advice to offer, I’m always happy to hear it ;) I don’t discount anyone’s advice. He does a lot of revision. The work I get him to do is always very similar each day so that he understands what he’s doing. When we start something completely different, I sit down with him and prepare him that he hasn’t seen it before, and that it might make him feel anxious about not understanding it straight away. Then I go through and do the first bits for him until I can see that he ‘gets it’.
    I used to give him Ritalin breaks to be honest. New research has started coming through about how Ritalin and meds like it, actually help the ADHD to physically change. They think it’s to do with the fact that the brain is being supported by the medication so it has a chance to work on itself and this is especially true in a young brain which is changing and growing all the time. As his psychiatrist says, “you can take him off the meds if you want to, that’s your choice, but why would you want to when those meds are helping him and his brain to grow?” It’s not as simple as that, but I know what she means.
    I drink chamomile tea all the time and look how calm I am! Don’t wait till you need it, have it just coz you want to.
    I hope your week gets better. I would really love to tell you that you should go and take photos of bands and remember that you don’t have to show anyone if you are worried about them and have no confidence. At least you’ll be practising though!

  4. Andrea says:

    Hi Kathryn,

    I struggle with medication for my son too, seeing how he gets so sleepy an hour after i give him the meds and how his face and tummy has bloated up not just from eating more (which I try to control like you are) but I think also from water retension. There was once he suspected that I had hidden his meds in his yogurt. So to prove (or lie) to him that there is no meds in his yogurt, I ate half a spoonful in front of him – I was so sleepy half an hour after that attempt and to think that I only had half a spoonful of his half bowl of spiked yogurt!

    I guess we have to make the best decision we can for our child based on expert advice and our mother’s instincts.

    By the way, is he needing higher doses because he is growing bigger? At his age, he will be going through growth spurts?

    Take care
    Andrea

  5. KL says:

    Thanks Andrea. Yes, it’s awful seeing their faces all round and puffed up isn’t it. It’s something I really hate. Yes, he is getting bigger and this is going to be one of the reasons that he needs a larger dose. I guess I’m just hoping somewhere along the line that the medication will have supported all the other things enough that the behavioural things and psychology can take over from the medication one day. I need to be more patient I suppose, but it is hard.
    Your son didn’t want to take the medication? Is that why you had to hide it? We are very lucky with our son and medication. We explain everything to him about why he needs it and he takes it all by himself at the right time. He even reminds his Daddy to give it to him when I’m not there! We’ve never had to hide it or worry about him not taking it.

    • Andrea says:

      Hi Kathryn,

      My son had been good to take his medication from the measuring cup for almost 2 years. Last year something happened that drove his anxiety through the roof and mine with his. After that he refused his medication and I had to hide it in many ways which was very stressful for both of us. I hope Corey and you will never be in the same position. But if it ever happens (touch wood!), we can discuss the mistakes I made so that it does not happen to you.

      I had gone gung-ho 2 years ago to reduce his medication as he got better but had failed to see that his environment ie the school was shifting and his new teacher was causing him a lot of stress which he internalised and did not express until it was too late. I am now very cautious about reducing his medications.

      Recently I switched his milk/yogurt to lactose free and noticed it made a difference. It could well be a host of other reasons too. I am sure you have tried all the diet and will find one that best suits your family.

      Regards
      Andrea

  6. Samantha says:

    Hi Kathryn,
    I have been following your blog since watching the show kids on speed and I just want to tell you what an amazing job you are doing. You are truly an inspiration, and although your response would probably be along the lines of ‘this is what any mother would do’ , I admire how you are going about dealing with daily family life and am following your journey with great interest.
    Kindest regards,
    Sam

    • KL says:

      Thank you Sam. I needed some words like that tonight. This evening has been a bit of a struggle for all of us I think! Definitely time to review ‘stuff’! It’s always nice to be reminded that other people may have a more positive view of what’s going on because it’s hard when you are living the monotony of it day to day.

      Kat

  7. sarah says:

    Hi Kathryn,
    I’ve been following your blog since watching “kids on speed?”.
    What I’m going to write I hope and pray you take notice of. I do not mean to be an annoying commenter on your blog…I write as a person whose sister and countless other loved ones lives have (almost) been ruined by medications they were told were “helping” their “faulty brains”

    You have been lied to if your psychiatrist has told you the medication is helping your sons brain. The theory that medication for any mental illness fixes brain chemistry or “balances” chemicals has never been proven…each year a new study is released claiming that psychiatrists “think they have found something” but the evidence just isn’t there.

    Medication does alter brain chemistry but it does not fix it. The brain views the changes as unnatural and tries to compensate for them. e.g. if the medication blocks dopamine receptors, then the brain will form new receptors and start decreasing the amount of dopamine it produces.

    Medication over a short period of time at a low dose can have very beneficial effects….sometimes…but over the long term as the brain tries to adjust to what is going on…side effects become more pronounced and the benefits decrease more and more. Medications are then increased to try and help but it just starts the process again…the brain becomes hyper sensitive to the chemicals that are being altered…and the effects of this can actually be worse than the disorder that the medication is trying to treat!

    I applaud that you are working on your sons diet, but as beneficial as I’m sure it will be for him to have smaller portions of healthier food, it does not change the fact that risperdal affects the metabolism in ways that stacks on the kilos…no matter what food your eating :(

    Also, while I understand you wanting to give your son a “medication break” to see if he still needs it…the way you do this needs to be done very carefully and very few doctors explain how to do it. The body goes through withdrawal symptoms that can mimic the illness the medications are treating. It is not a sign that your son needs the medication it is a sign that the medication has been withdrawn too quickly and the brain is going hay wire trying to readjust itself back to being without the meds. Medication can not just be stopped cold turkey…especially risperdal…this can lead to psychosis if stopped too quickly!. Again very few psychiatrists will tell you this.

    I’m sure this must be a very frustrating comment to read as you are probably wondering what you are supposed to do if you have already tried everything and medication seems to be working?
    I am not going to pretend i know what will work for your family…but i do know that as terrible as mental illness is, medication over the long term makes things a lot worse.

    What my family and I had to realise was that my sister was not sick with a “broken brain” but she was reacting to the overall unwellness of our family. Deep family issues, problems with relationships, negative patterns, scapegoating all needed to be acknowledged and dealt with to see lasting and positive change….was it easy? NO!! Were its results instantaneous? NO!! was it painful? YES!! but worth it? YES!! And not as painful as knowing that my sister was being drugged up, sedated, and suffering horrible side affects because it was easier than dealing with unresolved issues.

    • KL says:

      Woah. Where do I begin? Firstly, thank you for being brave enough and caring enough to comment and tell me your own journey and story. I think I might actually do a whole blog post based on your comment and my response so everyone can have the chance to read it. For now, let me tell you that I have had this uncomfortable feeling in my stomach and head for a while now regarding the Risperdal medication. Thank you for pushing me to examine those ‘gut feelings’ and discuss them with my husband tonight. Like I said, I’ll do a post about all this hopefully soon.
      KL

      • sarah says:

        Hi again Kathryn,
        Thank you for your response. I’m so glad you weren’t offended or annoyed by my comment. It is not something people are usually open to hearing so it was such a relief to read your response. Your son seems like such a sweet and intelligent boy and the parenting work you have put in has gone so far! The way you parent Corey stood out in the program as being what really helped him progress! so it would be devastating if medication and its awful affects undid it all. It really angers me that clinicians lie so much to people about faulty brain theories when they have no proof. It really shouldn’t be legal!
        I want to stress again, that if stopping the medication is a route you and your husband decide to go down, then please do so with extreme care. And DO NOT listen to any doctor that tells you to stop it cold turkey or to reduce it by half before stopping. A lot of GP’s in particular recommend the halving then stopping method. When this is done (more often than not) the patient goes through withdrawal effects and they are labelled symptoms of the illness OR a symptoms of a new underlying disorder that also will need medicating.
        Some people take over a year to come off their medications safely. Switching to a liquid form of medication can work well as it is easier to decrease the dose gradually. It is also sometimes the case that medication needs to increase again slightly before coming down again if you notice withdrawal effects starting to emerge.
        It is best to get a doctor who will agree to monitor this process…the frustrating thing is that these clinicians are rare in Australia…but they are out there. And the better informed you are as parents the easier the process will be.
        Praying for the best outcome for your family as tough decisions are made.
        I will look forward to reading your blog post and the discussion it generates.
        Sarah

      • KL says:

        It takes a fair bit to offend or annoy me ;) I’ve had lots of practice controlling my responses thanks to our boy! Don’t worry I know about reducing and weaning off. Corey is only on the liquid form at 1.25mg/100ml so it’s actually not going to be too hard to reduce it and come off over the next few months.
        K

      • sarah says:

        Wonderful! All the best to you all,
        Sarah

    • Gary Evesson says:

      Using your own argument:

      I actually do take a medication that fixes my brain chemistry and it works great. Therefore all medications that fix brain chemistry must work. Therefore you must be a liar. QED.

      Please, at least try and make your arguments logical on *some* level.

      • sarah says:

        Hi Gary, Sorry to have upset you. I can understand that what i have written is not an easy thing to hear. If you are on medications that you feel are helping, and you are making a fully informed choice to take them, then I wish you all the best.
        I agree that medication affects brain chemistry. But the truth is that there is no evidence that they are fixing anything in the brain. They suppress and control symptoms and sometimes they dont even do that. They do alter chemicals in your brain. But there is no test doctors do (or any test they could do even if they wanted to) to see if anyone has a chemical imbalance that needs fixing in the first place. When they have measured chemical levels in peoples brains (which is very hard to do accurately) they have not found any imbalances that relate to any disorders.
        I have challenged several websites that spread the “chemical imbalance myth”. Each time I have, the websites have changed what they have written.
        It is a theory that was spread because it encouraged medication compliance and also was a tactic to try and reduce stigma (which incidentally didnt work).
        It is easier for some people to believe that their emotional problems are because of a faulty brain and not because of life issues that need addressing.
        If pressed or asked directly, doctors will admit this. I have talked to many psychiatrists and doctors that when asked directly have admitted that there is no evidence for it. If you do enough googling you will find the evidence soon enough for yourself.

        http://chriskresser.com/the-chemical-imbalance-myth

        http://www.theage.com.au/national/health/does-a-brain-chemical-imbalance-cause-depression-many-find-it-hard-to-swallow-20120616-20h25.html

        Again I do not mean to upset or offend anyone but just want to let people know the truth so they can make fully informed decisions for themselves.

        Sarah

      • sarah says:

        I am also not trying to say that medications don’t work and are harmful because of my sisters (and other loved ones) experience with them. I’m basing my argument on the fact that their is no evidence that they fix what doctors claim they will fix when they tell you to take them.
        The experience with my sister helps confirm this for me but it doesn’t prove it.

  8. Pingback: Decisions, decisions | Day in the life…

  9. sarahk750 says:

    Do you mind me asking why my other comment was moderated?

  10. Victoria, Canada says:

    As someone whose son takes the same meds that Kat’s son takes and who is similarly conflicted about giving them to him, I felt the need to respond to Sarah’s post and put my .02 cents in.

    Sarah, it seems like your intentions are well meaning but I have to point out that a parent with a child with certain neurological conditions that are severe enough to be critically interfering with his development (not to mention in some cases putting his own and other people’s safety at risk) has few options available that make the kind of difference that medications can make.

    I doubt that any of us are fooling ourselves into thinking that we are “fixing” our children – at least I don’t feel that way. The medications allow my son’s brain to slow down enough for us to be able to do other therapies with him such as OT, physical therapy, intensive tutoring etc

    My son is 7 and after trialing several medications for a couple of years and not finding much relief we decided to wean him off all meds and treat him with homeopathic, nutritional supplements, diet and even energy medicine ( a form of acupressure ). I also pulled him out of school and began homeschooling him. He was off meds for close to 9 months and it became very apparent that he was regressing physically and developmentally. He has Tourette Syndrome and ADHD and while he was off meds he was also developing symptoms of OCD, severe anxiety and extreme mood swings (manic/depressive). I came to realize that a lot of things that I thought were side effects of the meds he was on were actually part of his neurological disorder.

    Between his tics, severe hyperactivity, mood swings, compulsions and anxiety he got to the point where he did not want to leave the house at all, he became a physical and emotional threat to his 5 year old sister and academically he was falling further and further behind because his attention span and ability to focus were non-existent. He was miserable and was making everyone around him miserable. It was a sad state of affairs all around.

    The two articles you quoted are about depression and one of them very briefly mentions ADHD. As parents we have to be so careful not to take anything we read online as gospel. While it’s true that pharmaceutical companies have been known to overzealously market drugs in order to make money there are also many conspiracy theorists out there who firmly believe “the man” is out to get them. You also need to consider THEIR motives. Most also have a lot to gain from selling their on products, programs etc etc

    And here we are as parents trying to raise relatively functional children in the midst of this endless debate. It’s enough to drive anyone mad!

    Kat, if you feel that going off meds right now is the right thing to do go for it but also keep an open mind. I HATE medicating my child every day but every time I see him being able to function, focus enough to actually learn – even if still behind his peers academically, better control his impulses, being able to enjoy hobbies like Lego and playing with friends, all the things that he could just NOT do off medication I feel a little better. Is he “fixed”? Are things perfect? Absolutely NOT. Will he stay on these particular meds forever? If history is any indication, then probably not.

    It drives me crazy when I hear anyone say that “natural” remedies are best and we should never medicate our children. Until someone has walked in our shoes they really have NO IDEA… NO CLUE! These neurological conditions are VERY difficult to treat and there are NO easy answers. All we can do is respond to our children’s needs the very best that we can. Will we be proven wrong or completely incompetent as parents? Who the hell knows. All I know is I love my son and for the moment he is doing better on meds than off. If/when that changes we will need to adjust accordingly. I try not to get too far ahead of myself and take things day to day.

    • sarah says:

      Hi Victoria,
      Thanks for your comment and for sharing your story. I absolutely agree with you that you should not take what I write as gospel. I generally don’t think it is wise to take advice from people who comment on blogs, at least without some serious thought and after checking the facts for yourself. I could be anybody saying anything! But I do ask that you consider what is compelling me to write what I write. I am not personally gaining anything from this and have no reason to mess with the lives of families I don’t know who are struggling with their suffering children.
      I can empathise with how frustrating it must be for you as a parent when people, who have not experienced what you have been through, try and give you advice. It sounds like you have been working very hard and trying many different things to do what is best for your son and family. Mental illness is definitely not something that has any simple answers and not having “walked in your shoes” it would be wrong of me to pretend I know what is helpful. The truth is though that every situation is unique, and while there is definitely a case for the argument “do not judge until you have been there your self”, if you are only going to take advice from people who you feel have gone through what you have, then you are going to reject a lot of possibly useful information.
      When I first started to explore the gut feelings I had that medications caused more harm than good, I was very skeptical of alternative ideas. I still am very skeptical of homeopathy and while I have no doubts that a healthy diet and lifestyle are beneficial, I see the majority of homeopathy doing just as much damage, if not more, than psych meds. I agree completely that the people who promote these ideas need to have their credibility questioned just as much as those who promote medications. The more research I have done into this area however, the more that I have found that the arguments of those on the “anti-meds” side of the debate make a lot more sense to me and also tell more truth at no benefit (but rather incredible risk) to themselves than the “pro med side”. Even more shockingly (to me when i first noticed this) is that the arguments that anti-psychiatry people made years ago, are now no longer being refuted by psychiatrists, but instead are actually being confirmed and even published in medical journals for anybody with access to the internet and time, to see for themselves.
      Do medications slow the brain down? Absolutely! Does short term medication usage produce positive results for some patients that allow them to function in society in a “normal” way? Sometimes yes! But what about the long term? More and more evidence is mounting showing that in both adults and children they cause more harm than good. Medications may “work” for a little while but what I have experienced, observed and read about repeatedly is that they work for a certain time (if they work at all) and then things plateau, or worsen and then medication is increased and the cycle is repeated until the side effects outweigh any of the benefits and the symptoms that the medication was trying to eradicate start resurfacing again. By this time the medications have become so fundamental to the persons ability to function that the dependence on them is huge which makes coming off them insanely difficult. The disorder becomes chronic and sometimes can not be helped no matter how high the dose gets. Medication can only be increased by so much…and then what? Other medication? Shock therapy? Psychosurgery?
      What is it that you hate so much about giving these medications to your son? Think about these feelings and explore them fully. You decided to take him off the medications at one point for a reason…and from what you said it sounds like you have not ruled out the possibility of doing this in the future. Why? You say that your son has a debilitating neurological disorder. And that you realised the things that you thought were side-effects of the medications were actually symptoms of this. What lead you to this conclusion? This is a very difficult thing to determine, and simply the fact that your son had been medication free for nine months does rule withdrawal out. There are people that have come off these medications that are still experiencing withdrawals many years later…and these are just the experiences of what happens to adults. The withdrawal experience of children is extremely understudied and not fully known. There is also full acknowledgement now from those in the psych profession that these symptoms are actually the effects of withdrawal and not an underlying condition like first proposed. People who have had no psych history at all who have taken medications for back pain or nausea have been reported to have full blown psychotic episodes when withdrawing.

      I know that this is not a nice thing to hear and incredibly frustrating when it appears like meds are the only things working…but speaking from the perspective of someone who has seen the horrible (sometimes irreversible) affects of long term medication use on loved ones, and wished that the medication path had never been chosen, I feel compelled to warn people.

      What you choose to do is up to you and I certainly can’t force anybody to take my advice,
      but I do encourage you to do research for yourself and trust the feelings of doubt and skepticism you may have that meds might not be the best thing to be giving your son.

      Hoping all the best for your family and your journey.
      Sarah

      • sarah says:

        Sorry that is meant to be “does not rule withdrawal out”

        “This is a very difficult thing to determine, and simply the fact that your son had been medication free for nine months does rule withdrawal out.”

    • KL says:

      Hi Victoria, thank you for commenting. It’s definitely a topic which has stimulated much discussion and thought. I am so with you on your journey, your little man is only seven. It’s hard isn’t it. I often have to remind myself that there are families out there who’s kids have even more difficulties than my own, and while I’m certainly not ‘happy’ about that. I am thankful. I am definitely keeping an open mind to the medication. I guess the thing with me is that I was already researching and starting to think about taking him off before anyone commented on my blog. It never sat well with me, and while I’m not ruling it out completely I actually really feel deep down that we can help him through his difficulties in other ways.
      Sometimes I think of it like this though when I consider how against these meds some people are. ….. If my son had diabetes, no one would question for a second that we need to give him insulin. Yes, we would of course be expected to control his problems using a healthy balanced diet, but we would certainly not be judged for giving him the medication he needed. Yes, I am aware that every medication is very different and that there are different levels of research involved in all of them… but it’s something to think about.
      Again, thank you for reading, and I so hope that you and your boy find that balance that you need.

  11. Victoria, Canada says:

    Dearest Sarah, I really do appreciate your comments. And of course all the arguments you present all sound very valid… except… what is the alternative? I would love for you to show me scientifically validated, long terms studies on the use of any natural remedy or treatment that has significantly helped children such as ours. One of the hardest things about this debate is that there is SO MUCH contradicting information out there and you can’t take everything you read to heart until you consider its source.

    As it is with most things in society, it all comes down to money. Controlled scientific studies are expensive and they have to be paid for by somebody or some organization. Whoever’s got the money gets to decide what is studied, for how long and whether the results will be made public or not. Also, the results that are published may be interpreted and written up in a certain way based on the bias of whoever paid for the study in the first place. That’s what I mean by not taking anything you read anywhere as gospel. The ugly truth is that no one knows what the true effects of giving medication to a particular child will be in the long term. There’s very little scientific data available and what IS available is more than likely biased based on who paid for the study to be done. And to make things even more fun every child is different and reacts to medication differently. That’s why I hate giving medication to my son.

    Having said that, one thing you are failing to mention in your posts is the irreversible effects on these children’s (and I’m talking about children who are clearly struggling and who do not significantly benefit from “natural”, chemical free treatments) self-esteem and sense of self-worth when every day of their lives they are having to deal with a body and a mind that they can’t seem to control. They fail academically which gives them a very poor prospect for a career that will sustain them financially. They fail socially so they often become reclusive, loners who have an extremely hard time relating to other people – and in the most extreme cases leads to anti-social and sometimes psychopathic behavior. (If you want to consider the extremes, that’s one for you.) The loneliness, the frustration of having so many wasted talents and the unshakeable feeling that you don’t belong in this world because of your differences often leads to depression and sometimes suicide. These are the things that keep me up at night as a Mom.

    To answer your question, what lead me to believe that the symptoms my son was experiencing after having been weaned off meds were a part of his disorder and not side effects of the meds is because when I looked back I realized he had quite a few of the same symptoms before he ever went on medication. I always disregarded them as quirks and idiosyncracies but the more I learned about TS, ADHD and OCD I realized those symptoms and behaviors had always been there.

    Kathryn, I am so sorry Sarah and I have hijacked your blog comments but I do believe that this conversation is really useful. Sometimes I don’t know how I truly feel about something until I have to explain it to someone else and reading our debate may help you and other people who read this make up their own minds. I’ve often found that the topic of medication is a little bit like religion or politics. People tend to get very passionate and polarized about it. In the end we all have to make our own choices and live with the consequences of those choices. Which is why I try very hard not to judge anyone’s decisions – especially when it comes to parenting. In the end we all are doing the very best that we can. I always joke that I was a perfect a mother until I had children of my own.

    Wishing you all the best with your awesome little man. : )

    • KL says:

      Hi Victoria. It’s all good as long as you both continue to be respectful. :) I’m happy to provide a platform for your….discussion…

  12. sarahk750 says:

    Dear Victoria,
    Thank you again for your comment! I empathise and see as valid everything you have written and feel very humbled by your honesty about your struggles. You sound like a mother who cares very very deeply about her son!!
    I will do my best to respond to your points so please let me know if I miss things.
    First of all alternatives!
    Wouldn’t it be wonderful if I could give you accurate, reliable, long term studies on non drug alternative healing methods for helping your son!! The idea that there is something out there that tells you to try x + y with a little bit of z thrown in and bam perfectly functioning child! would be very helpful sometimes. One of the things I found incredibly frustrating when I first started really investigating the claims of the anti-med advocates, was that they told me heaps about what I shouldn’t be doing and what wasnt helpful but not a whole lot of stuff that I could do that would help! There are a myriad of alternative options out there that all have their followers claiming “this way is the best way! And all have their share of testimonies on how such and such has helped and now life is “the best its ever been thanks to X” . While I have personally found a program that I’m very passionate about getting adopted in Australia (open dialogue) and also have a strong Christian faith that I feel is the main and best thing for all and any of lifes problems, I am still very cautious of suggesting any solutions or alternatives or remedies to others because as you said, every child is different and responds to different things in different ways (hooray for uniqueness :/)
    I believe its very important for each family to decide on something that resonates deeply with what they know to be true themselves, and then go with that. Some people claim that this is medication, and as much as I dislike this, I can’t (and should not be able to) force my ideas on anyone else. Having said this however, what I have found more often than not is that medication doesn’t really resonate with what the families feel is the best thing to do, but rather is the desperate attempt to do SOMETHING when they feel there is no other option.
    When I mentioned irreversible side effects from medication, I recently met someone who has a type of medication induced dystonia that affects their speech. They are off medication now and have been for years and while there is still a chance they may recover it looks like, for now, it is there to stay. There are numerous cognitive deficits that can occur as a result of medication as well as diabetes from weight gain, that once you have can be managed, but not reversed. And most frighteningly other more serious side effects such as sudden heart failure and neuroleptic malignant syndrome.
    When I really think and analyse my own childhood (and I really encourage you and others reading this to do the same) I feel that I could quite easily have fit in and been diagnosed with a whole gamut of different diagnoses and been medicated for them. When I was a child I had anger outbursts that were full on melt downs if I was expected to go downstairs for breakfast and my socks weren’t staying up! I had unusual anxious behaviours and also probably had some things that could have been diagnosed as “tics” I had moments of extreme shyness that affected how I was with my peers and others and sometimes for rather long periods of time felt so incapacitated by these feelings I did not want to leave the house or do things with friends. Now I will not make the mistake of saying (as some people do) that this was just normal childhood behaviour that gets overpathologised and labeled too much. These were things that were not okay and not “normal” and having never taken medication who knows what would have happened and how my life would have been different if I had? But for me seeing what is happening with the next generation and seeing the effects of medication on those I love around me…I am so so so so grateful that I never did! I had an incredibly amazing patient mother who recognised that what I was expressing was the reaction to a lot of deeply unhealthy things that were going on in our family and really in society and the world I general. She validated my experiences constantly and did a lot of emotion coaching that was not so different to what Kathryn does with her son. She also, which I am so grateful for, did an incredible amount of her own self work to heal the issues that she personally had that I was reacting to as a child. She modeled to me an example of how to overcome and always conveyed the belief to me that she believed this was something I was capable of doing. She did not put a time limit on when I was expected to be able to do them and did not compare me to other children, but with beautiful patience and confidence in who I was as a person, repeatedly conveyed to me that she believed I could. It really scares me when I think about what may have happened if my mother had decided it was too hard and I was taking too long or was too disfunctional to keep going the way I was, labeled me with an illness and had given me medication! The affects on my sense of self would have been huge! . Life is so complex and full of different challenges and everyone is incredibly unique in when and how they handle it. We all at some point display behaviours and emotions that go outside of the range of what is considered normal behaviour, and part of living is discovering how to navigate through this and learn how to “be”. When we have successfully learnt this we have the confidence to do so again the next time a challenge arises. What I see with those who are medicated is that this is a lot harder. And while they may avoid some of the extremes that unmedicated people go through, they also miss out on the incredible life lessons learnt from them and self-confidence that comes along with having come through it and survived. We have to be so careful about the impressions we give children about who they are and what they are capable of doing. We also have to be incredibly aware that children are so real! They are like little health gauges that tell the family what they need to work on and resolve. When they act up or out of the ordinary, they are (from my experience anyway) sending a message loud and clear that something is very very wrong in the families way of relating that needs to be dealt with! We owe it to children to stop, listen and analyse family dynamics and ask why are they really doing these things? Are they ill with a broken brain? Or is it something else going on?
    I can’t begin to judge anybody elses family to say what needs to change for them, I also want to point out that I do not agree with the idea that it is only children with mental or behavioural problems that show there are problems with the family. I know just as many children with cancer, chronic respiratory illnesses, diabetes and a whole host of other more socially accept diseases who are reacting to unhealthy family dynamics and lifestyles but get far more understanding and empathy from the public than those with adhd children. All I know is that when family issues were acknowledged and dealt with in my family things began to change for the better and God honoured the work that we were doing and began to heal and bless us.
    I sincerely wish you all the best with your journey, and say with certainty that I do not judge you for any decisions you have made or will make in the future,
    Sarah

  13. Victoria, Canada says:

    Sarah, it’s been a really tough week so unfortunately my response will be brief and will not address all the things you beautifully expressed in your post so I apologize for that.

    In the end, I think it’s all a matter of degrees. I no doubt believe you that you had some struggles of your own as a child and that you were lucky enough to have a mother who supported you through those times without needing medical intervention. Consider yourself lucky. Suffice it to say that what we are dealing with with my son goes beyond having a few tics and meltdowns and our family life, while not perfect, is stable, loving and supportive as can be.

    For me the issue of medication will always come down to how badly does he need it (in other words, could he function relatively well without it) and do the benefits outweigh the present and potential side effects. And even when medication is used it is not the only intervention being used but only one of the many things we are doing (individually and as a family) to support him in his physical, emotional and cognitive development.

    Wishing you all the best.

    • sarah says:

      Hi Victoria,
      Sorry to hear you had a bad week. I imagine you would have a lot of those…what you are going through is not easy. I will be brief too. I did not mean to imply at all that your family was not a loving and supportive one. I’m very sorry if I did because it was not my intention. I had a very loving and supportive family, but like every family that exists we had our issues as well that needed to be dealt with. No family is perfect, as you have rightly said. I think so much damage has been done by the idea that there are the “perfect families” that are loving and stable caring with perfect children, and then their are the families with children who have emotional troubles and these are the ones that have uncaring and unloving and horrible families. It leads to either demonisation or idealisation. We have to realise that there are families that could be labeled as dysfunctional that can be very loving and caring, as well as families that are stable and loving but at the same time still have deep issues that need addressing. Sometimes these issues can be too painful to acknowledge because we get so afraid that their existence means that we are one of those “dysfunctional bad families”. It is a dangerous, judgmental way to think. It blocks the way to healing.
      You will get no judgement from me on the difficult decisions you make for your family,
      Sarah

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