Sonic back in the mental health system...Obsessive Compulsive Disorder (OCD) or something.

Marguerite

Active Member
I'm wondering if you need a multi-pronged approach. Why is he obsessing about food? What is it about food he is obsessing about? I know with Autism Spectrum Disorders (ASD) there are not always reasons, but I have found it generally comes from somewhere, even if it is trivial in origin. I have often described one particular stimulant of difficult child 1's, which originated when he tried to mimic an emu call. He was older and able to articulate the source.

My boys are both thin, the only time difficult child 1 was at all overweight was when he was on risperdal. When he was out of medications for months, he got 'the munchies' a lot and both he and his wife would do things like buy a large box of donuts and scoff the lot in one sitting. He can get away with it, she can't.

Could there be an anxiety component that he will be hungry and there won't be anything for him to eat? Teen males especially seem to get this sort of panic over food, my BFF's son did this in his teens. He'd come home from school and would be irritable, aggressive and just plain difficult, until she was able to poke food at him. He would be frantic for food, as if starving. I saw it myself, it was scary. Then I saw a lesser degree of it in other friends with teen males.

difficult child 3 forgets to eat. It's late afternoon now and I am certain he has not had lunch. He's 18, I won't get his lunch for him if he can fix it himself. I know he hasn't even looked in the fridge because there is a large serve of lasagne there and given half a chance, he would scarf it down. I have other leftovers in the fridge which I know difficult child 3 loves. When he finally surfaces and realises he is hungry, he will eat a lot in a short time.

I learned years ago to keep a fridge loaded with healthy food in quantity. Home-cooked, generally. Often the kids would get home from school, graze on what they could scavenge from the fridge, and then be too full to eat their dinner. So I stocked the fridge with the sort of food they would get for dinner. If the kids ate two sausages, some carrot sticks and celery with Vegemite at 4 pm then in a way, they had their dinner early. If they had room at 7 pm for lamb casserole or roast chicken, not a problem. If they didn't - again, not a problem. Over time they learned to not eat too fast or too much for a snack so they would be able to enjoy their dinner also. But I stopped stocking chips, biscuits, lemonade etc when it vanished fast. At first I would buy a week's supply for each child, each in their own favourite flavour. A treat. Then the snack food would vanish fast, and I know it was one kid responsible, not all of them. But all the kids' snacks were getting wolfed down and it just wasn't fair. So no more snacks. They could snack on fruit and vegetables. Or boiled eggs. Or cold cooked sausages.

Having protein food available seemed to work best for us when the kids were in their teens. Of course, the kids also ate their way through a lot of pot noodles. So I made pasta, which tasted a lot better and was high in protein (I use whole egg and plain flour). Protein will satisfy for longer. Carbs and fat in combination will also stick to your ribs, but it's not a healthy diet plus you end up craving more.

I've seen a Prader-Willi kid of our acquaintance when he wanted food. This kid was very well controlled for a PWS, but it finally got too difficult for his family because he needed to be watched every minute of every day. His mother told us of one memorable time they went to a buffet restaurant and she tried to help him exert some controls. I've been with them at a buffet and he was okay that time, but it can be unpredictable and difficult in the extreme.

Sonic is also, from what you've said, MWM, an intelligent kid. Yes, he's obsessed with food, but not to the extent of someone with PWS. The difference is extreme, as I am sure you know. We've talked about this before. My easy child was obsessed with food and would steal food constantly in her teens, has had a weight problem since before puberty. We're wondering if it could be hormonal. She was very difficult, but there is no way she could come close to a diagnosis of PWS. In easy child's case, we think the problem may date back to infancy and possibly even in utero - placental insufficiency meant she was born malnourished and underweight. We've met others who had a similar medical history, and they also have had problems with weight and food obsession in childhood and teens. Do you know if Sonic had any such problems at birth? If he did, it could help explain to Sonic, why he is like this where food is concerned and perhaps make it easier for him to resist the nagging "eat it" voice.

Good luck with this one. Teen males can eat you out of house and home. When we had easy child 2/difficult child 2's first boyfriend staying over so much (for weeks at a time sometimes) he ate a huge amount. Nearly 7' tall, still growing (back then) and constantly hungry. It took a lot of fuel to keep that furnace stoked! I had to stop him using a mixing bowl for his breakfast cereal...

Marg
 

Giulia

New Member
G, I am sorry I was tough on you. I consider myself extremely well informed on issues regarding Autism Spectrum Disorders (ASD). I have studied it for as long as I have had my son and have gone to seminars and joined parenting groups. I have taken my son to every possible professional for his various issues and am still doing it. And, yes, I love my son dearly.

I know you go to every professional you can to get an answer. I know you learn as much as possible about Autism Spectrum Disorders (ASD). I know you do your best.
Here, on this board, we all know that.

We are confident you do your best.
Again, we try to help you as much as we can. And yes, sometimes, a professional misses a crucial detail to help you.
 

BusynMember

Well-Known Member
G, I am 58 years old. I have had mental health issues all my life and have helped Sonic. I have seen the entire mental health system change several times. There is nothing you can tell me that I don't already know from first hand experience.


Marg, thanks a lot :) We have tried to find out why he is so obsessive about food and the only answer we get from him is, "I don't know" or "I'm hungry." He will not eat meat, veggies or most fruits. He doesn't like their textures. There are many sweets and nasaty carbs he won't eat either because of this. Example: He won't eat chips with ridges. He will literally throw up. I am relieved to be having an appointment and a new point of view later.

I have an update on Sonic in another post :) I can't trust him anymore and that hurts me, but he asked me to keep him safe so I will, even if he doesn't like it.
 

Giulia

New Member
G, I am 58 years old. I have had mental health issues all my life and have helped Sonic. I have seen the entire mental health system change several times. There is nothing you can tell me that I don't already know from first hand experience.

I didn't think only about the mental health system. I was saying in general.
As you have all this experience, and some that I don't have, you can recognize and better than I may recognize that body and mind work together.

I am not dumb enough to deny you the experience you have.
However, to have seen the problem of obsolete answers first hand, I think about such a problem. Because it can lead to solutions. Simple as that.
 

whatamess

New Member
Giulia, you are persistent, but with good intentions I can tell. I feel and I suspect others on this board feel similarly, that there are very few textbook educated professionals who can even come close to understanding our situations. Give diagnoses, prescribe medicine, order tests...yes... truly "get" the day-in and day-out of our lives...not so much. We come here to be with people who have the same experiences as parents and caregivers to difficult child children. Before I had my children I studied psychology in school and was fascinated by diagnosis's and case studies, so I can understand your drive to understand and offer help, but that might be best accomplished, more respectfully accomplished by your being a passive reader instead of a detective. If you find you have a valuable insight after reading (without asking clarifying questions), then I think you should share that. Just know that you are attempting to cross over a line on this caregiver's support site to give advice from a perspective that is not given the same weight as parents who are actually living the experience with their difficult child's.
 

Giulia

New Member
A passive reader ? It seems that you don't know me at all.
And no, it's not a question of being caregiver or not, but I know that if I didn't play the detective for myself, seeking answers to get the care I need and maybe more, you would not talk to me right now because I would had been in the beyond world (or as you say, in the heaven).

So since here, you feel threatened and in concurrence, I can live without you. I can live without someone feeling threatened because their world is not as perfectly organized as they want it to be.
I apply what I say : I pick up my battles, and think that it does not worth to fight for such peculiar things. There are other more pressing issues (like preparing my going back to university for doing something I love or the law I am fighting to make change) that it does not worth a fight for people who feel threatened because someone else tries to give a help, it does not worth giving up my health for such ridiculous fights.
So now, I unsubscribe myself, and you can continue to wish for a perfectly organized world where everyone at their own place and everyone is conform to the normalcy policy. Fortunately for the world, there are people who, despite the "abnormalcy", continue to hope and work for a better world to leave for the future generations (like my GP and my mom. The only ones who stayed even when everyone left the boat because "there is no hope for that pretending to suffer"). They continue to hope for the better even when everything fells apart, that the person cannot be helped. Yes, they persist to try and help even when no hope seems to be left, they even play the detective even when against any "well meaning order" prevent them to do so.
Excuse me to admire them, and admire their wish to never give up even the person who seems not to deserve help and not to be someone we can help. Excuse me to admire these persons who, even when the person is not someone who "deserves" to be helped and "pretends to suffer", tries again and again to help her no matter how hopeless it may seem.
Excuse me to wish to be like them and not thinking that "she made the choice to suffer, so she deserves to be without help".
My father suffers from substance abuse, and yes, he needs help no matter what, and yes, I will continue to persist to try and help him even when it seems hopeless. Because hopeless is a word which does not exist in my vocabulary, no matter what it can be thought.

In the mean time, I will continue to do what I have to do, so I leave the board by unsubscribing and take all my time to help my father no matter what people may think about, may judge or whatever they want.
I don't want to become like you and wishing a perfectly organized world where everyone is at their own perfect place. So yes, I ask the unsubscription from there, no matter what.
 

whatamess

New Member
Guilia, I am speaking for myself to say that I do not feel threatened by your offers of assistance. I don't think you should leave the board. Maybe I am confused as to your reasons for being here. Are you seeking help for yourself and/or your father? If so, it hasn't seemed as such. In reading your posts it is obvious that you really want to help others. That is a very wonderful quality, but as with any group, it is appropriate to understand the people you are interacting with and perhaps the unwritten 'rules' for those interactions. I feel an unwritten rule is, unless you are a caregiver to a difficult child child, then your opinion on how to help the situation will not hold as much merit.
 

Giulia

New Member
I help my father and in this help with my father, it involves helping others.
One does not go without the other, it contains "and" but not "or".

Well, I persist to think that it is better leaving for me.
Because some feel threatened with the way I give assistance. I don't think it worthes fighting over there. I just hope that they may understand one day that it is for them and not against them. I can only hope the best for them.

I just know that if I didn't play the detective and if I didn't have someone who helped me play the detective with my own issues, I wouldn't be able to speak with you because I would had been in the heaven (if it is an understandable way to say). Caregiver or not caregiver, it didn't mind in those days, because this is what saved my life. The rest are only unworthy details who don't worth arguing about, because otherwise, we miss the essential : someone played the detective and I could save my life. That all what matters.

So since I don't believe it worthes time and energy to engage in fights over such peculiar things, leaving the board is the wisest option I have. Yes, I acknowledge that other options exist, but the wisest option is leaving the board. For me. And for some who feel clearly threatened by the way I give assistance.
It is my choice. Not someone else's choice. It is a choice I do before it becomes even worse than it is now. It does not worth to fight over and leave a bitterer place than it is now. I don't want to leave after having exhausted all my energy into fights such that at the end, no one knows why the fights begun. So better choosing to leave proactively than reactively, and this is a choice I can do.
It is not "someone told me to do so", but a choice I made because it is the wisest and safest option I get between my hands.
I don't have the choice about the need of medical care. But I have the choice not to stay on a forum board.
 

Malika

Well-Known Member
Lol, Giula, your post sounds like a Shakespearean soliloquy or Sydney Carton going off to be executed in Paris at the end of "Tale of Two Cities" ("It is a far, far better thing I do now than I have ever done...) :) Come on now, don't be so serious - stay and give and take on the board. It's easy for misunderstandings to occur - you meant no harm, you wanted to help, but your tone was not quite right. That's okay!
 

buddy

New Member
G, sorry you are thinking of leaving. Maybe think of it this way.... if we were a group in real life, a support group, billed as support for parents raising difficult child kids, would you go in person and join? I would probably not do that, just like I would not join a group for patients who are going through heart disease. I have lots of experience with that in my family but I am not a patient (for now) so would not offer ideas etc...even if they were truly helpful.

I recently called a domestic violence line to see if there was a group I could go to because my son is so aggressive. They described that most of their people are s eeking safe shelter and though we had many things in common, the focus of their work is not really related to what I was experiencing and I was welcomed to come, but they were concerned I would not feel much support.


It is maybe a difference between looking for help alone versus support and true moments of "I can TOTALLY relate". Even within this site, many of us (thank heaven because I appreciate it so much) will read other forums, especially since we have formed relationships with people who are parenting from the perspective of multiple forums..... (substance abuse, general, parent emeritus,etc.) and we may comment, but those comments are typically couched in terms like....I am not living this exact experience so I am just here to say I am thinking of you....or if we do offer thoughts, we clearly explain (unless the poster already knows where our heart is coming from due to knowing eachother for a while) at the start of things that we have not actually lived it from that perspective.....

So, in this group we typically both need and offer parenting support. While there have been times we have been able to try to support you, it has been from a different perspective from the focus of this group. And this happens not only with you but for us at times and with a few others who join in here. Many of us are like you, just willing to offer help. So, while you are welcome (in my humble opinion) it is just that you need to realize it is not a personal attack to say that you simply do not have the life experience that is what this forum is designed for. You have related experience and that is valuable....but you are not a parent or raising difficult child's and that is what the group is for. There are billions of people who could offer great help to us, but many of us can find lots of that in real life....but what we rarely find is someone in our shoes.

It is helpful to hear what a difficult child thinks but you can imagine that from our perspective you might not understand the big picture, and this is not said to hurt you, but the view from a perspective where you have HUGE responsibility for another human being....as a parent (many of us also have what you have...care for our parents or relatives too--but it is different)for choices, outcomes, etc....is quite different from offering help and ideas even with expert knowledge. I am a professional in one area sometimes talked about on this board. Many other parents here are as well. I put that job and ideas from that experience (which is since the80's ) FAR below my parenting experience. The comfort from having a fellow parent lend ideas and support has literally saved my emotional sanity this past year.

So, it is not a personal thing, it is just a matter of different life experience G. You seem to be a kind person. I stayed out of this until now, but I have grown to care for you....and I worry that you need a group for people who are experiencing and living a life following growing up as a difficult child. For people like you who have a lot to offer and still need to w ork through several challenges from your own perspective. There are many here who can also relate to that! Maybe you can start a site like that if there is not one. We have kids in our lives who may appreciate that! And I hope you dont feel like you are not wanted, it is just a matter of perspective.
 

BusynMember

Well-Known Member
Well, I have her on ignore now. But I find she is young, overly arrogant and not very helpful. She can stay, but obviously she is offending some people. I just tend to be one of those who are more outspoken than others. But since there is an ignore function, I don't have to read the responses. I feel like enough is going on in my life (I can not speak for anyone else) that I don't need to argue with a difficult child who can not get her life together. I would be more impressed if the difficult child were out living on her own because that is what we all want for our kids by that age.

Whether or not it is easy or hard for a grown difficult child to ask for assistance or live alone...they have no choice in the end and in my opinion that are old enough to learn on the run, if necessary. If there are mental health issues, there is community support that can make one more independent than living at home...there is assisted living and group homes. At least the difficult child is semi-independent and forced to learn skills. There is welfare, food stamps, and housing assistance for those who are unable to work as well as Disability. It is best to teach your grown child to be able to survive for the days when nobody is there for him/her.

There is a Downs Syndrome boy who is about thirty and lives around here. His mother is quite old and looks haggard and takes him everywhere with her. There are resources for people with Downs Syndrome. Many live in apartments with help or in group homes. The parents can still be very active in their children's lives for as long as they are healthy (and alive). But the transition when the parent is no longer around is gentler if they learn to trust others as well. I think about this young man at times. He has no siblings and I don't think he has a father either. He is higher functioning and could learn skills, and I wish his mother would allow him to do so.

In Special Olympics, where my son participates, most of those young adults are in assisted living and have jobs and are maybe 85% independent with 15% caregivers. Sonic is the only one who still lives at home because he is still so young. The age range is 18-whatever. It is heartening to watch these brave young people who are very close knit and having a blast.

There is help, at least in the US, for every sort of disabled person. It isn't easy to get or freely given out and THAT is where the parents come in...as advocates to get these services for our adult children. in my opinion our job is to be the warrior mom, not the constant caregiver. A lot of times kids step up to the plate when they have to and act quite the young child around Mom and Dad. Even my grown kids like me to baby them when I am around and I do!

At any rate, G, you point seems to be that some young adults still need their parents. I strongly disagree that this is a viable solution since all of us die before our kids. We need to help our kids seek as much independence as we can, for their sakes as well as ours.

I can not see your posts anymore so you can answer, but understand, I am not going to read it. I am just venting and hopefully this will be the last time I will feel like I have to vent. I wish you luck.
 

whatamess

New Member
Guilia, please understand that you have not been asked to leave the site. From what I know, you have not not been a part of any "fight". I also do not think members feel threatened by your presence. As Buddy said, this exchange is not about you personally. I can see from your last few posts that you feel you were saved by people who cared enough to help you. That is wonderful to hear! I sense that you want to repay that in a way by reaching out to others who are struggling so much. Your heart is in the right place, undoubtedly! And if there were a person who posted and got no response, I can see where if a caring individual stepped in and posted support, those words could make a big difference. As an example, this post by MWM was responded to by many people who know her and her situation and who have first hand experience to offer. Your requests for additional information about her situation seemed like you might have knowledge that others more experienced do not. It is probably judgemental to guess that your life experience would not offer additional insights. Who knows, you may, have experience that others do not and that is a good reason to stay. I think this is too hard to explain without inadvertently hurting your feelings. I think Buddy had a wonderful idea to create a message board for people who are in a situation similar to what you have experienced.
 

BusynMember

Well-Known Member
No, there is no reason for her or anyone to leave the site. There is ignore. I just want to make it clear that I'm not reading her responses because they upset me. So there is no point in her answering me. I don't want to be the reason anybody leaves. Ever.
 

Giulia

New Member
I didn't say that I was asked to leave.
It was a choice I made and still make in conscious, and without someone asked to leave me. A choice I made because I think it is the wisest for me, for you, for us.
It is something I prefer in the state of mind I am currently, and what I perceive from here.

Maybe I will come back later. But now, I feel exhausted by these misunderstandings, and I see them like fights.
I really need a break.

At the moment, living on my own is not a realistic solution. We are working on this path with mom and my family, we are doing our best every day, and I still learn new skills I need to live in this world and live on my own.
The person with Down Syndrome whom MWM talks about is the person with DS whom MWM talks about, I am what I am, and I don't compete to be "the most impressing difficult child of the world". There are many other places for such a competition, this board is not a place for it.
We have our uniqueness.
To be clear as MWM was telling, my aim is living on my own. But unfortunately, it does not take the same pace as others. And in Jewish families, at least in sepharades families, a child may leave his family at 30 or beyond.
And in France at least, housing crisis is such that children leave from their families much later than in the US.
And some may never be able to live outside the family, for a reason or another. Who are we to judge them ? The only person who can judge is a higher power (the way you understand it).



MWM, as I said, do whatever you want. You have your own experience of life, you have your own values, and we don't have the same values. No matter what effort we can do for one another, we don't understand each other, and I don't see the point of fighting over there.
And yes, no matter what you say to the other persons here, you are my main reason for my wish to leave. I am not here to "impress someone by my choices of living with someone or on my own", there are other places for "impressing someone with choosing by living on my own or not". I repeat, you are my main reason for my wish to leave.
I wish you the best for the future, for your children, for your family, for yourself.
 
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SuZir

Well-Known Member
Giulia, I have been short with you here before, but neither I hope you to leave. Of course your personal experience could maybe be more relevant and helpful on some ADHD forum for adults with ADHD or even parents with ADHD kids (maybe French, because there seems to be lot of local problems with diagnosing and medicating ADHD.) I know few that kind of support forums in my country and in those more spesific forums one who have been through all bureaucratic hassle with the matter could be very helpful.

But I do hope you understand that here, or anywhere else, people may not feel comfortable giving you their personal, exact information for various (very good) reasons and you should not try to be too persistent in wanting that information. And to trust others when they say, that they have enough information about certain thing. People may not want to go on to the detail in public board, but that doesn't mean they haven't researched that specific information. And if you are not an expert of the matter who is giving out the absolute brand new information, it may not go well to harass people for details and claim they do not know what they are talking about.
 

Giulia

New Member
Such misunderstandings are a good reason for my wish to leave. Even if some don't hope me for a decision.

I am sorry if my way of saying make seem like "claiming they don't know anything". It is not my intention and it was not.
And such misunderstandings exhaust me more than the legal fights, or any other fights with doctors, legal professionals....

For ADHD boards in France, I didn't find one where I feel comfortable in.
 

Malika

Well-Known Member
I guess it depends what you want. I have also found, on occasion, that a few people here have seemed unsupportive, even unpleasant in their remarks to me. But... what I derive from coming here is (for the moment!) more valuable to me in helping me navigate the tricky waters of difficult child-seas and so... I carry on regardless. In any group of people, there are bound to be tensions and misunderstandings. Can't be avoided, I daresay. Important thing is to keep one's eye on what is the "shared aim" of the group, I feel.
Oh - and I should add that the VAST majority of people here are incredibly kind and supportive in their approach :)
 
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T

TeDo

Guest
G, it is sometimes nice to hear the point of view of a difficult child about certain situations. We parents cannot get into our kids' heads completely. That part is nice to have here.

However, a parent speaks as a parent. Someone who is legally responsible for their child. Those of us here have 100% of our energy invested in our children. We don't leave a stone unturned. We are Warrior Moms and most of us have fought battles you cannot comprehend. We all take what works and leave the rest. That is a "motto" of sorts here. The other important unwritten rule is to trust that the parents have done all they can. If they say they've done it, they've done it and there is no further need to discuss that. We offer suggestions, personal experience, and support to each other. We have to know when to stop as well.

I wish you well and good luck in finding a place to belong.
 
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