Don’t want to be B’s mom anymore

Discussion in 'Failure to Thrive' started by B’smom, Aug 26, 2018.

  1. B’smom

    B’smom Member

    Hi, my name is S, I am a mother to boys, my 10 year old B is diagnosed with multiple disabilities: Obsessive Compulsive Disorder (OCD), odd, Generalized Anxiety Disorder (GAD), adhd, violent outbursts towards other and himself.
    He’s currently away at residential treatment for 8 weeks. He comes home on weekends. Today I had several toys thrown at my head because he couldn’t find his toy. I truly tried to stay calm, but after over an hour of him swearing and screaming at me, kicking things, throwing things at me.... I broke.
    He’s gone back now and I’m breaking thinking that I’m a few more weeks he will be back full time. And I don’t want him back. I am a horrible and selfish human being. I think there’s something seriously wrong with me. I don’t have options, there are no supports available in our area. We are currently driving two hours one way to drop him off and then two hours back home. He’ll come back with strategies on how to help support him when residential is done. But he’ll always be B. The house is wonderful, absolutely wonderful when he’s gone. I don’t miss him when he’s gone. There’s not a single moment when I think “I wish B was here”. And I know that’s a horrible thing to say about my son and that eats me alive. I should want to be around him, I should want my baby with me. But I don’t. I want friends and I want a job and I want out of this house. But most of all I dont want to be abused by my son anymore. I don’t want my other children being abused and losing out because of B anymore. I told my husband tonight that I don’t know how I’m going to go back to having him full time. He tells me we’ll just have to enjoy the small happy times that we get... together. That he’s just a child, he needs our support. But we’re not doing this together.
    I’m the one dealing with it all. I’m the one having to leave work, I’m the one he verbally assaults on a daily basis. I can’t do this anymore. I do not want to live like this. I miss being happy, I miss being able to breathe. This guilt, this gut-wrenching guilt is eating my alive. I’m not a horrible person but these feelings.... they make me want to disappear. Make me feel so unworthy of being a mom. I have given up everything to help him. I feel like I have nothing left to give.
     
  2. Copabanana

    Copabanana Well-Known Member

    Look. S. The first thing that needs to happen is you need to lay off--yourself. Every mother. Every single one. Would feel exactly as do you, if they told the truth.

    Every. single. thing. you write. Any mother would feel. In your circumstances.

    By judging yourself so harshly, you make it that much harder for yourself. So stop. And breathe.

    All of this, has to stop:
    This is cruel to you. And it is unfair. No human being wants to be abused. Or oppressed. Especially by their child. This is a special kind of tyranny. It is bad enough. But to gang up on yourself makes it worse.

    All of this is really clear and it makes absolute sense:
    This is absolutely true, too. You are the one who is being sacrificed. That is not right.
    You are very, very strong. And you are a loving mother and a loving person--who is in an impossible and difficult situation.


    Others will be around later. It is a Sunday and always slow. People will show up tomorrow morning about 6 am PDT.

    I want to make a few suggestions. First, as I said, you have to get on your own side, and stop being your own enemy by invalidating what you feel and what you know to be true. The way I have organized the post may help. The first part is untrue, wrong things. The second part is true things, real things, valid things, and things every single loving mother would feel.

    There will be a time, probably soon, when it would be best to communicate to your husband and tell him you are in trouble and you need his help. But I would think about getting a counselor, or a pastor, somebody who is not involved. Because you need real support here. I might even consider showing him this post, at some point. But first you need to believe you deserve to have every single thing you voice here in this thread.

    Right now you feel like there is a gun to your head and you are walking the plank. Who could do this?

    You may choose to do it. You may decide to do it. But nobody could or should do it with a gun to their head, feeling they will be destroyed.

    There are things you can do, but a plan needs to be in place, for you...first.

    I would think about insisting he stay longer at the facility...that to support him...you need a support plan for you. Which includes respite...and help...

    Is the school district involved? Does he need an IEP? Are you certain about the diagnoses? I went to Children's Hospital Child Development center for comprehensive neuropsychiatric evaluation by a team. Your child may have a developmental disorder that has not been diagnosed. IIs the regional center involved? Can you go back to work and your husband stay home? Or both of you work part time? That is just for a start. There are many, many things that can be done.

    I went to a free legal service called Disability Rights. We got a free attorney, You may benefit from an attorney.

    I will take a stand here. Your son cannot come home until you feel you can do it. And you cannot do it all.

    I am glad you found us. You will find support here. There are a number of mothers who have gone through similar. They will be here, soon, to help you.

    But first, please stop being so unkind to yourself. Please. What you are feeling is normal in a horrible situation.
     
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  3. B’smom

    B’smom Member

    Copabana, thank you for the reply. I’ve felt, no I have been so alone for so long. I used to be the person that was never home. In high school, I didn’t just have one group of friends. I hung out with everyone, every crowd. I don’t have a single friend left. B’s behaviours got too much, for everyone. We stopped going out, stopped getting invites. Life kept going and we just stopped. We don’t even go out as a family anymore. Either B goes or the other children go.

    When we had B, things were great until he changed. He got a high fever for 3 days shortly after 12 months and then it was like my son was replaced with a changeling. He stopped everything. He stopped talking, stopped making eye contact, sat in a corner and hoarded toys. Screamed and cried all the time, nothing made him happy anymore. Sensory became a huge issue and he even stopped eating. I have an educational background in children and youth, I knew exactly what the regression most likely meant- autism.

    So we made an appointment and that doctor sent us to another agency. We waited years for an assessment (4 when he was diagnosed) and we were told he didn’t have autism. Which I was shocked, because I had worked with many children with that diagnosis, B was just like them. No we were told he had an intellectual dosability, ODD and Obsessive Compulsive Disorder (OCD). When we was 8, he was diagnosed with CAS- childhood apraxia of speech, depression and his IQ was reassessed. He did not have an intellectual delay anymore- it was normal (minus verbal comprehension- 1%).

    Since then, we’ve been passed from doctor to doctor, each one gives a new diagnosis, a new behaviour plan. But nothing really helps, or helps for long. His Obsessive Compulsive Disorder (OCD) becomes an issue and the reward becomes an obsession.

    The residential placement he’s at, is currently reassessing him, ruling out his current diagnosis and I’ve asked them to evaluate the possibility of him being on the spectrum. I still believe he’s on the spectrum.

    Their motto is “children do well if they can” by doctor Ross Greene. Everything is about collaborative problem solving (CPS). I know it works, I used it at work all the time (I’m currently working since B is gone). But being called a “selfish f****** b****” from clients vs your own child- affects me so much differently. It breaks me more and more each time.

    The school is decently great. I’m not a fan of the principal but they work hard for B. They also use CPS with him. He has an IEP and is identified on an IPRC. (I’m in Canada). I don’t think there’s much they can add. But I often get calls to pick him up because he’s become aggressive towards peers and teachers.

    As far as my husband goes- he’s a wonderful man, he really is. He’s kind and patient, if I needed to get away, he’d pay the hotel room. But that’s mostly where it ends. He unfortunately makes more than I would ever be able too and financially speaking, it wouldn’t make sense for him to give up his job vs me. This is why I ended up where I am. And according to him, because of my background in this.... it’s easier for me to go to appointments because I “understand”. But I doubt he’s ever read a report from the doctor. He can’t even tell you our children’s teachers names by June.
    We’ve spoken about how I feel, typically every six months I have to have a breakdown, tell him I need help and then threaten to leave. So he’ll put down his phone for about a month. He’ll play with the kids and help with the household chores... and then slowly he goes back to his phone and his world. And I’m left alone, trying to manage everything.
    The threat of leaving is empty though, B goes berserk if either of us leave, even for a day or two. My husband left for a week in July, for a vacation. B spent the entire week having meltdown after meltdown. Calling me every name in the book and told me he was going to burn the house down with everyone in it. I didn’t sleep the rest of the week. I was terrified. B’s younger brother is often his punching bag, I take showers while he’s using the washroom so I know everyone is safe. In January, B tried to kick him down a full flight of stairs.
    The agencies in our area turn us away, either because of his behaviours or lack of intellectual diagnosis. We’re stuck in limbo and no one wants/can help us.

    I can’t do this anymore, I don’t want to do this anymore. I’ve somehow managed to become my mother. Only instead of marrying an absuive alcoholic man, my son is the one abusing me. If this was a marriage, I’d have had a divorce. Sorry I’m rambling.
     
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    Last edited: Aug 27, 2018
  4. Copabanana

    Copabanana Well-Known Member

    The freight train just keeps on coming. Until we accept it is a freight train. And only then can we deal.

    You cannot be expected or expect yourself to handle alone a freight train. That is why you are in misery.

    There are other mothers here who have gone through this. And they have come out the other side. And their kids have too.

    First you need to stop accusing yourself. It is not your fault.

    Please keep posting. I care deeply. You are not alone.
     
    Last edited: Aug 27, 2018
  5. Copabanana

    Copabanana Well-Known Member

    Where are you?
     
  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Doctors are not always right. I have an autistic son and your son sounds autistic plus more violent (but some autistic kids are violent until they learn how to calm down). Autism often starts at a year old or so and many times doctors misdiagnose it. I think from what I have read on this board it is worse in Canada than the U.S. because of dislike of labeling young kids, even when they clearly have to get help and have disorders. My son started help before age one and at now 25 he is a great young man who is quirky but on his own, happy and self supporting. He hasnt had a meltdown since about age eight but he was getting proper interventions

    Since your husband has a good job, I suggest taking advantage of that and traveling to help your son. I recommend strongly taking him to an exceptional neuropsgchiatric clinic is the U.S. such as Mayo Clinic in Minnesota. Or similar we have many. You will get him an intensive evaluation. No results are guaranteed. There are no blood tests for autism or whatever else your son was diagnosed with (wrongly I feel) anything else. He needs to search for help somewhere that believes some kids are born or develop with problems that can be helped. Generally the earlier interventions start, the better the prognosis.

    Residential treatment diesnt help autism. Sensory help, Occupational Therapist (OT), physical therapy, social skills classes, and learning about the neurological differences in these kids by us help them. My son had all of this help.

    If you must stay in Canada for diagnosing you are probably stuck dealing without resources and the belief that he is too young to label. I am grateful every day for the help my son received. He would not be himself without all the early help.

    Good luck, love and light. Never ever be afraid to challenge doctors diagnoses, especially therapists. Psychiatry and some of neurologically are inexact sciences that can not be tested or proven by blood tests or x rays so they are guessing. They are not Gods, even if they think they are. Mom gut is powerful. You and your son should not have to live thos way and if you keep looking for good professionals, as I did, you will not have to. B. can do better. He just needs tje right help and maybe you must look around to get it but its worth it.
     
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    Last edited: Aug 27, 2018
  7. Copabanana

    Copabanana Well-Known Member

    S. My thinking is like swot's. This is what I thought, too, when you first posted. I do not believe we on the internet can diagnose, so I held back.

    I googled the symptoms you described. I wrote into the google search box, this:

    12 months.
    High fever.
    Unhappy.
    Stopped talking.
    Stopped eating.
    No eye contact.
    Screaming.
    Crying.
    Sensory.
    In corner.
    Hoarding toys.

    And what came up was Autism and Sensory Processing Disorder.

    I am wondering if your health system does not diagnose developmental disorders to save money. I mean, the services your child would require, and the help you would require, would be considerable. Multiply that by thousands and thousands of families. If this is the case, this is EVIL. To give children WRONG diagnoses to save money. To hurt children, and families and mothers this way. And I always liked Canada.

    But there must be a way. The problem about coming to the states for a neuro psychiatric assessment is cost. Your insurance would likely not pay. But what if we look for developmental neuropsychologists in Canada that specialize in Autism?

    There is a mother who posts here. LittleBoyLost and she is an RN. She is Canadian and has a young adult son who has drug problems. Her frustration to get her son drug treatment was gargantuan. When she finally got her son in the treatment program she decided she would take on the government!!! I am going to pm her and ask her if she has time to read your thread. She, like you, is very strong. And very smart. And very brave.

    You are very, very brave. You are a wonderful mother. Please, please keep posting.
     
    Last edited: Aug 27, 2018
  8. Copabanana

    Copabanana Well-Known Member

    I was able to find these possibilities for resources re autism in Canada. Not all, or even any, of these doctors are neuropsychologists. What they are, are experts in autism. They will know of developmental neuropsychologists. Maybe there will be one near you.

    autism Ontario

    ryan a. stevenson phd. The University of Western Ontario

    findapsychologist.org includes canadian provinces, and you can enter the specialty.

    Dr. Lonnie Zwaigenbaum Autism Research Centre, University of Alberta

    Dr. Steve Scherer The Centre for applied genomics at the hospital for sick children

    Oh. I get attached to people. I will always remember you, S. And I will pray you and your child get the help you need.
     
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    Last edited: Aug 27, 2018
  9. Copabanana

    Copabanana Well-Known Member

    This is infuriating.

    You would be surprised how many of us here, run into exactly what we have been running from our entire lives. Me too.
     
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  10. B’smom

    B’smom Member

    There’s a child much younger than B at my work that is diagnosed. I have seen children as young as 2-3 diagnosed in our area but they all have “typical” autism. I think it’s more giving that specific label a child, it’s hard to take it away vs a mental health diagnosis. Which is dumb. So they don’t like to give it out.

    With my background, I worked 1:1 with B and “forced” him to come out of his shell so to say. I didn’t let him stay in the corner, I encouraged him to play, I made him use words before he got what he wanted. My belief is that with autism, is that some people can be pulled out and live typical lives. Look at Temple Grandin. She’s absolutely amazing. My best friends brother has autism, he’s corky but lives a normal life. Engaged and has a job, a house etc. Most people would never know.

    Part of me hates myself for working with B before a diagnosis was given. The doctors didn’t see what I saw at one, two, three years old. They saw him at 4 after 3 years of 1:1 support both at home and at child care.

    We receive funding from the government with his diagnoses, but the agencies don’t want/can’t to help. So for example, there’s a child respite home in our area. But they tell me because his IQ is normal and his behaviours are severe, they won’t take him. I’ve called government agencies and they all tell me that the home is within their rights. So I have all this money and no one to help. And because the money (3500 a year which really isn’t a lot) comes from the government, I can only use it for certain services. So I can use it for speech therapy, I can’t use it for testing. I can use it for respite services, I can use it to have someone clean my house (). I’d rather clean my own house and save $160 an hour for speech therapy.


    Thank you both for replying and for the support. It feels nice not to feel alone anymore. To get that off my chest with people who have been or are in similar situations. I am in Ontario, so I will look up that doctor at western university.

    B is currently surrounded by psychiatrists and psychologists, Occupational Therapist (OT)’s and ST’s, etc. I’m hoping they’ll see what we see. Since most doctors have spent a total of 6 hours max and then diagnosis him. Where they’ll be spending weeks with him.
     
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  11. B’smom

    B’smom Member

    This is absolutely correct. I’ve had doctors tell me they’re hesitant to give out that diagnosis, especially now. They said it was like ADD/ADHD where doctors gave it out too much and now they don’t like to give it out.


    The issue with B and that diagnosis is that he’s “social”. In the sense that he will talk your ear off on a subject that he’s interested in. Doctors brush off the diagnosis because of this. But to have a reciprocal conversation like most people, he doesn’t do. He doesn’t really care about what your day is like or how you are doing. Or he will say things, very rude or inappropriate things (“you don’t look beautiful today mom”, “that drawing looks stupid” and then look at you and say “was that rude?” Yes honey, that was rude, don’t say that. But it’s like he’s not doing it to be malicious, he just says what he thinks. I don’t know maybe I am wrong. I’d just love an explanation as to why he regressed. Not a single diagnosis explains what happened to him.
     
  12. Copabanana

    Copabanana Well-Known Member

    I hope so too.
    Wow. Maybe he will be a scientist and professor. This sounds like academics I knew.
    Sounds like my significant other. Who says why not say the truth.
    In life do you ever think it is really ever only one thing?
     
  13. ahhjeez

    ahhjeez Member

    Hi,
    I just wanted to say that my heart goes out to you. I could feel the pain in your post. Your son sounds like he is very much on the spectrum. I am in no way a doctor so please take all this with a grain of salt. This is just my opinion. If I'm understanding what you wrote, he regressed at 12 month? Typically loss of skills or regression appears at 15-18 months, but I don't think that's written in stone. For my son, I noticed differences at 10 months and even a bit earlier. At the time I thought he had hearing issues because he would not look at me when I called his name or talked to him. He also wouldn't play with toys. Both my husband and son are on the spectrum. My husband presents as more typically autistic. More textbook. He has huge difficulties reading facial expressions and will often blurt out stuff that is best left unsaid even if its true. He's much more self-aware now since my son's diagnosis. and his own, and has done a ton of work in learning about his autism. Same with my son. If it is at all possible, I would try and get your son to a neuropsychologist who specializes in autism. We go to a place several towns over from us that is affiliated with a large hospital in a major city near me. They specifically treat autism from young children to adults. They have been invaluable. Please be easy on yourself. You sound like you are doing the very best you can in an incredibly difficult situation. I wish you peace.
     
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  14. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    My son was "too social" to to one bozo psychologist. Autistics can be talkative. But tjey have no social SKILLS. They dont understand give and take conversations. They do all the talking or none or go into a monologue. They stand too close. They make goofy sounds and interupt school classes. They are so sensitive that they melt down over nothing. Big bad meltdowns

    I still think the U.S. has more resources but thats your choice. I treated my son with autism interventions, just like you did, before he was diagnosed. I Knew. My mom gut and education knew. He was autistic.

    At 11 we finally rook him to Mayo and he got easily diagnosed and it was obvious. Every year from then on gets better and better. He was never as behaviorally severe as b. But he had quirks and some meltdowns. In his case, indications are he had it at birth. He is adopted and his birthmom had drugs in her system when he was born. He had crack in his system. He was never shy or quiet, but screamed and noise drove hom nuts and any changes were a meltdown. He got speech help and started talking fluently at 5. He loved to run around with other kids but he did not know how to or want to follow game rules. He had to be taught socializing normally and is okay at it now, although he enjoys his apartment's and quiet after work. He also has a normal IQ. Most with Autism Spectrum Disorders (ASD) do. Often though they have learning disabilities.

    I do wish you and B. tje best. Keep looking for proper help. It is there.
     
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    Last edited: Aug 28, 2018
  15. B’smom

    B’smom Member

    No, not at all, there’s so much more to it probably. I’m almost obsessed with it... Its mostly because no one has ever been able to explain the why. Why did my baby regressed so much. I’ve asked about the possibility of PANDAS but most doctors shrug it off saying “it’s controversial” We have an expert nearby but she’s closed her wait list because she’s so full and won’t take you unless you’re actually diagnosed with it. Which makes it impossible.

    And unfortunately travelling in Canada via plane is outrageous- almost triple the price in the states. While we’re lucky my husband makes good money, it’s not considered good outside our community. I don’t know if that makes sense. Toronto homes are in the millions, our homes, are a fraction of the price for the same size.
     
  16. B’smom

    B’smom Member



    Thank you for taking the time to reply. It means a lot to me not to know that I’m not alone. It was honestly a 180 that he did. We had pictures of him at 11 months getting a hair cut, he was smiling and so happy. The next time, it was a nightmare. Screamed, we held his arms and body so we could get it finished. At 10, it still feels/sounds like we’re abusing him while he’s getting his hair cut. We’ve tried everything, I want to say it’s definitely a sensory aspect. He also stopped responding to his name, we had his hearing tested because I thought maybe that was an issue. It came back normal.
     
  17. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    We did the hearing test too because he wasnt talking much, just echoing .If I said "Get yout coat, Sonic" he would say "Sonic." If I asked "Whats your name?" He said "Name." But he knew it. Just couldnt answer. He had a great rote memoey and could sight read and count by two. He understood numbers but the words were just sounds he remembered.

    He started speech, social skills, Occupational Therapist (OT) and PT and school for kids who needed extra help (were different) by age 2. Really helped. But we couldnt take him to the fire works until he was a preteen. He would cover his ears and scream. I had to cut off all his shirt tags or he would take off his shirt. He liked to suck the neck of his shirt. Often the shirt would be half drenched in spit. Sensory issues, a huge part of Autism Spectrum Disorders (ASD). To this day he likes his place quiet, the tsgs iff his shirts, wont touch certain foods.

    He just turned 25 and is no longer socially inappropeiate in front of others. He is happy and CALM and very loving. He will never be a social butterfly and has obsesive interests but all I care about is that he seems so content. He is my hero.

    Keep searching . Never give up. Question any diagnosis that feels wrong. Yes, its hard and a pain and I am sorry. Wishing you the best.
     
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    Last edited: Aug 31, 2018
  18. Littleboylost

    Littleboylost On the road unwanted to travel

    Hi B;

    I am Canadian And although our situations are very different they are also extremely similar. I do believe are socialized healthcare system is terribly broken. I also believe that diagnosis and are not given out because then that leads to socialize spending accessibility. Believe it or not I have a friend who is a neurosurgeon who knew his son was on the spectrum and it took him until his son was seven years old before he finally got a confirmed diagnosis.

    There are two areas that I honestly feel you need help with. The first is your family and your marriage situation what are you doing to counsel the family your husband and yourself. I’m not sure what region you live in and I understand that your husband does make the majority of the money in the household that is a household and he needs to contribute more than income. I have a situation with a colleague right now where she has three children the marriage has disintegrated and they’ve tried desperately to get help for their child who has severe ODD they didn’t get the help they were acquired of things escalated to the point where children’s aid stepped in. The next thing I am going to tell you may sound extremely harsh but it is a reality. The best way to get assistance for your child maybe to give him over or at minimum threaten to relinquish parental rights. This is essentially what my colleague did and then the sports fan place to offer assistance. I would like to say that things are all Rosie in the garden for her now but it is not. Sometimes we must look at the bigger picture and be analytical even though her heart strings are in the way, your other children you and your husband all deserve a good sensible quality of life. Your son is contributing negatively to this scenario. I am gravely concerned as he gets older and stronger that it is going to be much more harmful situation to you and your other children. Do try to seek help for yourselves therapy for yourselves and a more comprehensive program for your son is absolutely necessary. Sometimes we have to get ugly and push hard to get what we know our children need. That is neither easy, fair, or remotely in line with what we feel we need to do for our children as parents. This last comment comes to you from great experience. My son pill into drug addiction between the ages of 16 and 18 we tried desperately to seek help for him but were told because he was 16 he had rights and choices. Although it was very obvious to us that he was a harm to himself and others the system kept saying no. We ended up having her own child arrested after putting them out of the house the battles were horrible and ugly but this was a fight for his life. Now that he has spent six months in an inpatient residential rehab program he will be the first want to look at Yuen rolled his eyes and say how could I not have been a harm to myself and others I was a drug attic to mom. It’s a simple as that but our system is set to protect the general populace and prevent overspending. If our moronic prime minister was remotely Brighton have to understand if he had of decriminalized drugs and took that money and focus it into rehabilitation.; We would have money to deal with mental health and addiction issues in abundance. The other things that I am campaigning to change that our youth act needs to be adjusted to address addiction and mental health issues between the ages of 16 and 18 our children are at harm and they become a harm to themselves and others. As parents yes we recognize they are becoming independent and moving towards adults good but when knees train wrecks hit your home and your family it’s time to sharpen the pencils and change the act to protect her children and do what ever it is we can to help them. It’s no shock to me that the number one killer of young men in Canada between the ages of 30 and 39 is currently overdose. A majority of these individuals have mixed disorders mixed mental health and psycho social disorders that have not been drake diagnosed or treated appropriately. My heart goes out to you and your family keep up the fight because the fight is indeed for all of your lives.
     
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  19. ahhjeez

    ahhjeez Member

    We were tossed out of 3 hair salons because my son could not tolerate his hair being cut. He used to gag when I washed his hair. I eventually had to switch to dry shampoo which worked for a while. He's now almost 20 and still has an incredibly sensitive scalp, but can tolerate getting his hair cut.

    Please keep posting. This is a great place full of support and information. I wish you all the best.
     
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  20. Triedntrue

    Triedntrue Active Member

    My son is bipolar and 36 with alchohol and drug use involved. Also Obsessive Compulsive Disorder (OCD) and other diagnosis too numerous to mention. I do not know alot about autism or the canadian health system but i went through the tantrums, special schools, outbursts embarrasement and verbal abuse from young age. I just want to offer my prayers for you and your family. I have been there done that. It is hard but not your fault. It took this group to convince me of that.
     
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