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Parents of Mentally Ill Children Have a Long and Difficult Journey

I’ve long been a fan of the Rudyard Kipling poem, “If.”

If you can keep your head when all about you
are losing theirs and blaming it on you…

I can relate to this verse. I’m sure all parents of mentally ill children can. Often the greatest challenge we face is not going stark raving mad ourselves.
Being the parent of a bipolar child is painfully tough. There's coming to terms with your child's mental illness, the expenses, and facing the stigma. More on my parenting blog.If you can trust yourself when all men doubt you…
If you can wait and not be tired by waiting…
Or being hated, don’t give way to hating…

Being the parent of a bipolar child has not made me popular. My child has been passed over for parties and had his own invitations declined. Other parents who only know my child by the stories they hear from their own kids are quick to label him as a bad seed. And if he’s a bad seed, surely he must come from bad parents.

If you can dream—and not make dreams your master;
If you can think—and not make thoughts your aim,
If you can meet with Triumph and Disaster
And treat those two impostors just the same…

We all have high hopes for our kids. When your child is diagnosed with a mental illness, it’s hard to come to terms with the impact of the diagnosis on those hopes. Should you continue to worry about paying for college, or just focus on getting him through high school?

If you can …watch the things you gave your life to, broken,
And stoop and build’em up with worn-out tools…

Undoubtedly, the hardest part of parenting any child is the hurt we suffer when they suffer. Our children tend to suffer more, and there are few (if any) rewards to soothe their suffering.

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings,
And never breathe a word about your loss…

I try not to think of all the prescriptions I’ve filled in the past five years. Particularly the ones I refill—at full market price—only to have the psychiatrist a day later agree they are not working and here, try this instead, and no, it’s not available as a generic. And it may not work either. But let’s hope for the best.

If neither foes nor loving friends can hurt you…

People fear what they don’t understand. Many people don’t understand mental illness. Some of them are closer than you think—friends and family members you never expected to do or say hurtful things.

Kipling’s words paint a disheartening portrait of the world—not unlike the world we face daily as parents. But at the end, he offers this as inspiration—if you can survive all this adversity,

Yours is the Earth and everything that’s in it

helpingWhich perfectly describes those moments when we are proud of our kids…when we feel like we’re doing right by them…when we haven’t lost our temper or cried in front of them…you know, the good days.

I wish all of us more of those.

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171 Responses to Parents of Mentally Ill Children Have a Long and Difficult Journey

  1. Shirley says:

    Hi I tell myself daily that my family is not the only one, but I still feel like we are all alone. Tonight with tears in my eyes, I hate feeling self pity. Three years ago, my 16 year old daughter was diagnosed with autism, schizophrenia, paranoia, odd just to name a few. It’s so hard. People just don’t get this is real. I have other children. The oldest two are angry and the youngest who is 8 is afraid. She has been in the hospital at least 6 times this year. The longest time being almost a month. She is very violent towards me and others. You name it. She has done it. Florida sucks when it comes down to mental illness. I love her so much. My children wants their sister. We don’t have a relationship with her and don’t know how. Now she goes into the hospital, they don’t even keep her 72 hours. All I hear now is the medication can only do so much. She needs long term treatment. But where do I turn to with low income. NOWHERE! Even though some days are harder than others, I continue to keep the faith. Believe In Gods word and remember Matthew 15:21-26

  2. amber says:

    Wow Shirley… I lived in Fla so I feel ur pain. My son has aspergers n anxiety disorder as well as panic attacks. It too had been a very very long road.. My son turned 18 and has 2 mistermeaners.. and still a junior in high school.. he got a domestic violence n for breaking our van door.. he hit his step father in the head… he spent 18 program hrs in jail Kansas has an 18 hr hold time on all DV cases as well as he could not come home for 72 hours.. he truely is a mess right now.. he is so so worried and I hope the courts see that yes he has done wrong and hope he stays out of jail it his 1 st ever time getting into trouble at this point he has no money n we r trying to get him on social securiety they want him to do a yr long diversion

  3. Anne says:

    To all three of you my heart goes out to you. It is soothing to know I am not alone. I am so sorry for your suffering. The most painful kind of suffering is watching your child struggle while feeling unable to prevent it or stop it. It is isolating to have a child with mental illness because as a culture we don’t have a common language or recognized treatment paths for each brand of illness.

    Right now my 15 year old is upstairs lying in bed. She suffered bullying, cyberbullying, sexual harassment, and physical abuse at the hands of other students for 5 years in a row. She developed social anxiety and depression. We have almost lost her to a suicide attempt.

    We have done all the right things. We even moved twice so she could have a fresh start at great cost to the family and her siblings.

    I have had to quit multiple jobs and my husband took a medical necessity leave to help. But he doesn’t understand her behavior either and gets mad at her. He tells me it is manipulation and choice. I have to intercede between the two of them and this causes great strain.

    If I think too far ahead I become paralyzed. I have to try to take care of myself and my other children and husband while functioning according to what is best for my mentally ill daughter one day at a time.

    Sometimes I watch reality tv and eat whole bags of chips or a tub of ice cream. Sometimes I drink too much wine and listen to jazz and read vapid magazines. Sometimes I rail at God and ask him to take me or give me cancer instead of continued suffering for my daughter. Sometimes I am driving and see myself driving the car off an embankment. I remember my mother died at 65 and think death would be such a nice BREAK.

    Don’t worry, I’m okay. Really okay. I am the glue in the family and I will keep being the glue.

    I have to accept I am not responsible for my daughter’s mental illness, and there is only so much I can do.

    I have asked her principal to hold her place in school and asked for work to be sent home. She won’t do it. But my husband is freaking out.

    We are waiting to hear today if she is eligible for a one to two month intensive treatment center program. But there is a three month wait list. Obviously there are a lot of kids with similar problems. I don’t know if she can hang on that long.

    What happens to her sophomore year? Will she repeat? Will she struggle like this her whole life? I am still enraged with I think of the kids who hurt her and suffer no consequences. I want them to feel what they caused.

    I do know she inherited the propensity for mental illness. It’s on both sides of the family. She was a worrier from the time she was little. Couldn’t handle the drop off preschool with mommy education lunches upstairs. She would’ve been down the stairs from me. She couldn’t handle it and I paid extra and worked more at the co-op so she could stay. The other mothers hated me. Then in kinder she used to run out the door and down into the parking lot to find me.

    My other daughter was also bullied and took years to put herself back together. She is doing very well, despite being moved after starting her senior year. My oldest son was born atoxic. Suffered brain damage at birth, underwent two heart surgeries, had myocardial infarction, seizures, a crippling learning disability, and ocular migraines that made him pass out. His learning disability looks like low level aspergers.

    My husband and I want to hit people with healthy kids who complain about their kid not getting enough play time on the soccer field.

    Sorry to rant, just hitting a low point and never had the guts to throw my family stuff out there like this. I just didn’t want to feel so alone this morning.

    Thanks for “listening.” I’m going to go for a walk and will pray for you guys.

    Anne

  4. Shelley says:

    I just found this post and have to say I’m glad I found it. My daughter is 21 this year and had many many issues since she was 16. Maybe 15. It’s a very long story, but has been filled with pain, anger, insanity, hopelessness,a vicious cycle.

    Trust me Anne I understand your frustration. I am still not sure what will happen with us. I live in Texas and they are treated as an adult at 17 here. She is an only child and I have never been married. We had a wonderful life now it is something so different. I never ever ends. There is no help here unless your loaded. She wants help, she does not want help. It has truly taken it’s toll on me.
    Anyway, I heard you Anne. Nobody in our lives wants to listen or help, and I don’y wanna talk about it anymore. People want the “quick fix” So I truly understand just getting the anxiety off your chest. This never ends. I feel medication (and trust me I was always against meds.) is our only help. She won’t go. She says yes then she changes her mind.

  5. Kat says:

    My daughter is 9 yrs old and i just had to put her in a treatment program yesterday because now her disability has rolled over into the school. As her mom , i feel i have failed her. Between her father my ex sexually assaulting her and a person who was suppose to be my friend abusing her as well(she has legal guardienship while i was trying to divorce him and keep my other two children safe) I am now facing losing a good man and losing my family and friends becasue they cant handle this. I have been fighting for her since she was 3 yrs old. Delaware doesnt care all they want to do is put her in counseling over and over which after 6 months to a yr they write her off. i dont know how much more I can take before I lose it. Sad part is thier father and the woman who abused her got off with a slap on the wrist. I sometimes wonder if my 9 yr old has the thoughts going in her head, why mommy? why didnt you protect me? I am mentally tired. Tired of people blaming me, tired of no one listening, tired that i keep getting abandon, just tired of it all.My 11 yr old and 15 yr old look at me and ask why, they love her but its taking a toll on them because they see me this way and they cant help.

  6. Anne says:

    Dear Shelley,
    Thank you for responding. It helps me feel a little less alone to know there are parents like you all over the country feeling stuck like me. I once wrote a grant for an organization that helps parents of kids with disabilities. I am a classroom teacher and mental illness is classified as a disability. It is called Parents Helping Parents. They connect parents with advocates whose job it is to help you find the right help for your kid. The service is free. The advocate works with the school or other agency to help you get what you need. If your daughter did not graduate from high school yet, then she still has a right to a free education and the state is legally obliged to provide it for her; whatever that looks like. It’s worth a call. Parents Helping Parents. Maybe google it and see if there is a national branch or a branch in your state. It could take all the work out of whatever steps you may have to take. I wish you well. I wish you peace. Keep telling yourself you are doing the best you can.

    Tell me what happens!

    Anne

  7. Natasha says:

    I am so relieved to know that we are not suffering alone. It is with tears in my eyes &
    A heavy heart that I have stumbled upon your stories of suffering and it is somewhat comforting to know that there are others out there going through this tremendously stressful experience, despite being resourceful people. Our 18 year old was diagnosed it’s borderline personality disorder and has disconnected from the family and opted to live in a refuge, after the mental health system failed him. We feel like failures and it is such an overwhelming feeling of shame and disappointment that comes
    With trying to explain mental illness to other people. Thank you all for sharing your stories, as it is really comforting to know that we are not alone. It feels like it most of the time!

  8. Misty sutton says:

    Our 16 year daughter was diagnosed manic depressive know as bipolar a month ago after ending up in a mental hospital for 17 days Life has been a real struggle. She is defiant,rebellious, violent and down right cruel. Everyday our life’s our sabotaged and we have 2 other children the oldest 17 & a senior (we can’t even enjoy her senior year) another daughter who just turned 8 who is scared in her home. Life is a real struggle beyond the words I could type. It’s heartbreaking to read all these comments of struggles other families face but it let’s me know we are not alone. I wish we could afford a treatment facility for her I don’t think she is making it in our home. She hates me & her dad. She won’t understand the importance of her medicine and refuses to take it till we get a friend or family member to come encourage her to take it.
    We do have a crisis therapy helping us but it’s not what all she needs. We are trying to stay stress-free but it’s a struggle when you are dealing with a teenager who isaid beyond defiant screaming I hate you & she screams she doesn’t want to live with us. She blames everything on us and accepts no responsibility for her own choices and actions. It is always someone else’s fault or our fault. I have looked up residential treatment but of course we can’t afford any of them and are insurance doesn’t cover them.
    Thanks for sharing your stories it does inspire me to keep trying to stay positive and stress free

  9. Cheryl says:

    I have come across this site as I am looking up any way to try and cope with what I am going through. My 18 year old has been diagnosed with drug induced psychosis this last spring and the first time in the hospital no one would let me know where he was because he did not want them to talk to us and because he is 18 I had to wait until he said it was ok for the doctors to talk to us. What they dont understand is yes he is 18 but mentally he is not. We have had 3 hospital stays the last one after he cut his arm after getting mad at me for asking him if he took his medicine. This time he wanted me to stay with him at the hospital and it killed me to have to leave him there but I know after 180 stitches he needed to be there. He came home and it seemed things were going better but we started to notice some behaviors again and like some of you above his step dad thinks a lot of it is him manipulating me. He walked out MOnday night and we finally heard from him today and he told us to leave him alone he doesnt need medicine he is dependent (I think he meant independent) and that he has money 900 from a job that he just quit so I dont think he realizes that will not last long and that if we try to contact him he will hurt us and to leave him alone. I have never felt so hopeless I have another son that has a chronic medical condition severe hemophilia with an inhibitor and sometimes that feels crazy it is the most expensive medical condition in the us and his medicine costs 1.8 million a year which how does anyone even think that is ok to charge that much he gets 2 teaspoons injected every other day but with out and the inhibitor this medicine is needed to save his life. With all that this mental disorder with my son is harder to deal with I do not know what is going on in his head I just want to help him but how he wont take his medicine he thinks hes ok but hes not I feel so helpless and I dont know what I will do if he does hurt himself or someone and I didnt do something but I cant even find him
    thanks for posting your struggles it does make you feel you are not alone I cant sleep its 4 am I have to get up in 2 hours with a seven yr old and try to function at work when I have no idea where my other son is and out of my 4 boys he was my sweetest most caring sensitive one that its hard for anyone that knows him to understand what is going on

  10. Halfgone says:

    Hi Anne,

    I have been reading your post over and over and feel like I am living your nightmare.
    How are you doing and coping?
    I am finding it more difficult to do anything anymore and feel I am having or had a nervous breakdown of all the stress and anxiety from trying to cope daily with my son’s mental illness for so long. He is 19.my husband and I are not doing well and have spent hundreds of thousands of dollars trying to help him. Nothing has so far.
    It is so depressing to live like this. My poor beautiful family is not what I ever thought it would be. I need to get help for myself first.

  11. Darrell says:

    I’m writing this at about 12 midnight because I can’t sleep, because my son won’t go to sleep. He has taken atleast five showers since we told him it is bed time.Our son was recently diagnosed as bipolar, like two months ago. He spent a month in the hospital, partly because he refused to take oral medications, after he had a complete psychotic break. When he finally came home they had put him on lithium, and Invega sustenna. He had very bad side effects from the Invega for the first five days after his release. We finally took him back to the hospital and they prescrived cogentan for the side effects. He came home and for about ten days everything was getting back to normal. Then he began to become withdrawn and uninterested in the things that he was getting enjoyment in just a day or two before. His psychiatrist set the date for his followup shot of Invega, but we started seeing some signs that he was reverting to his old ways several days before it was due. He received his shot on Monday and we were hoping that he would respond to it and start feeling better. Instead he has gotten progressively worse, to the point that we went to the ER hoping that the doctor would give him something to help. We were sent home without any assistance because they thought he should be hospitalized again. He just needs something to get him back into sync, not a full fledged stay in the mental ward, again. did I say he was in there for a month? Monday we can call his doctor and beg him to prescribe something for our son that will bring him back to reality. I just pray that he hasn’t lost more of what was left of his mind. He came home the first time very child like and seemed to have lost several years of maturity. I don’t know what to think other than to say that I am very affraid for my son.

  12. Ramona says:

    I wish a professional would login and help us all out. Reading all your stories helps, but we need solutions.

  13. marie says:

    To all of you please hang in there .Its now 2 years since my 20year old son had a psychosis and hospitalized .We all went through hell like all of you his behavior destroyed our wonderful family unit I had a breakdown and a year later my husband had a breakdown. No one knows what this hell is like but reading all these comment has let me know we are not abnormal .I now see his illness was what destroyed us not him .He is doing OK at the minute but I trust nothing and no one we have gone into a shell and have lost family and friends .They don’t get it and the trauma we all went through has changed us forever .I wish I could meet with you all and share cry and know that you all get it .love and respect to you all I wish you some sunshine on those days that are unbearable …the days when it it hurts to breath

  14. Jennifer says:

    I wish I’d known about sites such as this five years ago when things began to get drastically worse for my daughter, then 9 years old. Hallucinations, tantrums, violent and destructive outbursts, extreme self-hatred, self-harm. After her second hospitalization, she was put on lithium which made a big difference in the more psychotic behavior. However, the violence and self-hatred remained. After two years of putting up with daily tantrums, crises and violence (which led my younger sons to lock themselves in their room because they felt unsafe), I finally was convinced my child needed more treatment, even if it meant sending her into a residential facility. My husband and her Paychiatrist resisted and refused to listen as I begged and pleaded with them to get her more help. She got worse: couldn’t attend school for fear of having outbursts there, self-hatred making her ask me to run her over, inability to participate in activities that once brought her joy. Finally her father relented and we sent her with transporters to an all-girl treatment/boarding school in another state. It was such a hard decision to make, I felt so guilty and worthless as a parent, but I also knew if was unable to give her the help she needed by myself and I was ultimately trying to save her life. Almost a year and a half later, her life has changed so much for the better. She has grown and learned how to handle her emotions better. The rest of the family has gotten a reprieve from the years of abuse and fear. We are healing and she is growing. I know the future isn’t guaranteed and she will always have challenges associated with her mental illness. But for now there is hope. Try not to lose hope. Be kind to yourself. Take care of yourself so you can be there to help your child. Get support. Talk about it. And don’t give up.

  15. Juliana says:

    My son who is 14 has had severe ocd for at least two years. It’s so bad that I can’t even begin to list what it entails. My husband is like a lot of the husbands I’ve read about who think he can change his mind, but I keep saying he is sick he can’t make himself do things. I want to tell people about an autoimmune disorder that affects the brain which causes a lot of psych disorders. It’s called Pandas/Pans. I strongly urge you to look this up and see if your child fits any of the criteria, this could so be the answer you have been searching for. As I read some of these posts, I wonder if any of you have gone the route of supplements. My son has this, and I know the supplements are helping him. This is the hardest thing my sweet family has ever gone through and I just don’t know how much more heartache I can take. But I have learned to take it one day at a time and pray for what I need for the day. That’s all I can do. My God will provide. Prayers go out to all you parents.

  16. Connie says:

    You’re not alone, and there is state help for ill child and adult. Call disability rights, they can direct you and have advicates, lawyers, alsi state wide special needs parents advocates called SPAN just google for info. Also child and adukt can get case mgr. Through division of disabilities, and other resources, google also non profit foundations as well. You are not alone navigating through the system, they dont have funds to advertise so some little reseach to find, there are housing options in every state for pdd, mentally ill children and adults, if under 18 yrs talk to a lawyer or SPAN, about guardianship, so you can still make decisions for ill youth when adult to prevent homelessness. Ok hope helps, remember God is always there for all of us. .. God bless

  17. Paula says:

    I’ve been sitting here all morning thinking I am alone. Thank God I found this site. I too live in Florida. My adopted 11 yrs old son seems to be getting worse. Nothing seems to work. Because of his insurance we are down to every other week for counseling. I fear for his future.

  18. Juliana says:

    Paula,
    What is going on exactly with your son ? What are his symptoms ?

  19. Juliana says:

    Paula,
    What exactly is going on with your son? What symptoms is he having ?

  20. Brends says:

    I have spent another evening crying and being mad at the world. Found out my son will be going to Ohio’s state mental hospital for the third time.this time for a year. He broke into a church, than called the police on himself and told them a man held him at gunpoint and made him do it. He is 23 and has schizo effective disorder. I had delusions myself this time of being super mom and getting him the help he needs. I grieve for my son, I grieve for that adorable baby he once was, for that class clown he once was,for that handsome teen who never lacked friends or girls chasing him. I grieve for who he could of been had this horrible desesase had not gripped his being.I called NAMI today and decided to get into a support group instead of turning to drugs to ease the pain as I have done in the past. But I know a drug addict mother will surely never help him. We have to accept life as it is and not how we think it should be.I know what feeling hopeless and helpless feels like.I know how unfair it seems. I will continue to visit him and show my love and support. I will continue to be his advocate. There is only so much we can do. But if we all started writing our senater, govner,Congress men about the mental health system maybe they would start hearing our crys.20% of the prison population has mental illness. My son was in prison for a year, and he came out five times worse than he was before he went in. Good luck to you all, and remember prayer works!

  21. Mable says:

    I just came across these post. It is so hard some days to just deal. My daughter is 8 and was diagnosed when she was 3 with sever bi polar, ocd,panic disorder, adhd and started having ptsd after her older brother was kills. She has her good days and her bad. I guess I feel lucky that I have a very strong circle of people that work with my daughter. Dont get me wrong it was a up hill battle and I have fought for everything she has. She dies play and art therapy, horseback riding therapy, has the best physiatrist and a great pediatrician who all help and answer questions for me. I maimed streamed my daughter in school and I had to fight to get her IEP done right so she wont slip though the system. Just breath…things get better…I always tell my daughter she is special and even though she has rough patches it makes me really appreciate the good days even of they only once in awhile. I too diagnosed when I was a child with most of what my child has. As parents we just have to stay strong and never settle until they help you and your child.

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