Sophie’s Choice: Custody Relinquishment for Childhood Mental Health Treatment
by Susan Resko, The Balanced Mind Foundation Executive Director
Perhaps you have seen The Balanced Mind Foundation mom, Lori Gertz in the Chicago Tribune and Good Morning America. She has bravely shared her tragic story about her need to relinquish guardianship of her seven-year-old daughter, Ellie, in order for Ellie to receive the 24/7 treatment she requires and, at the same time, keep her family safe.
As so many The Balanced Mind Foundation families know, some children with severe mental health needs are too ill to live in a traditional family setting. Residential treatment costs more than most American families earn in a year, and there is a severe shortage of treatment facilities that accept very young children. We know painfully well how a child’s psychiatric illness can tear apart the fabric of even the most loving families.
The Balanced Mind Foundation recently surveyed its members to learn if parents who were faced with this dilemma were willing to be interviewed on national TV. Thirty-four parents responded affirmatively. I’m sure many more of you have faced this “choice” and (understandably) don’t want to bear the scrutiny of a national lens. The Balanced Mind Foundation parents surely get it.
Many of my friends and acquaintances with neurotypical children saw my quote in the Chicago Tribune and commented how unfathomable it is that families are faced with this “choice.” It occurred to me that their reaction is not unlike the one so many Americans had when viewing the 1982 film, Sophie’s Choice. In this film, Meryl Streep played an Auschwitz prisoner who was forced to choose which of her children would live and which would die.
Obviously, custody relinquishment does not involve the death of a child. However, it most certainly involves a horribly barbaric parental choice that causes “death” to a family. (Undoubtedly, a part of the parent must die with this choice.) Why does our civilized society allow such a shameful situation to occur? I think there are several reasons.
- Disbelief. Society still can’t wrap its brain around the fact that children can and do suffer from mental illness despite the overwhelming evidence to the contrary. Most people still believe that children’s psyches develop perfectly unless they are damaged by environmental factors such as bad parenting or severe poverty.
- Stigma, stigma, stigma! Mental illness is one of the last bastions of ignorance and stigma. Bad behavior is a sign of bad parenting, right? “What’s going on at home?” is often one of the first questions parents hear when seeking help for their child. Parental training is called for, and treatment for the child is often delayed for years.
- A broken mental healthcare system. If a child needed chemotherapy for a brain tumor, there would be a national outcry if parents were forced to give up custody. Society demonizes and stigmatizes mental illness to the point where we make its treatment practically inaccessible.
So what can we do? The Balanced Mind Foundation is a group almost 30,000 strong. We can help put an end to this abhorrent “Sophie’s Choice” dilemma faced by many parents.
- Post a comment here to show your support for Lori Gertz and her family.
- Share this blog and the media stories with your friends and legislators to educate them about the lack of services for children with mental health problems.
- Donate to The Balanced Mind Foundation so we may continue to advocate for the rights of children with mood disorders and their families.
Now is the time for The Balanced Mind Foundation parents to band together through online activism to reduce stigma and save our families and our children.
Thank you, Susan, for the well-written and thoughtful blog. I sometimes forget that those of us "in the field" and "in the swamp" may have a different reality than the general public. The children and families I have worked with and continue to consult with as well as experiencing bipolar in all its frightening glory up close and personal with my daughter has shifted my reality more than a little. Severe mental illness certainly exists in very, very young and precious children and many in the general public do not know this, have not witnessed it and/or have no contextual framework from which to understand it. It is a reality that the needs are far and beyond what is available to the majority of families. And, as complex as these issues are, simply put, many families feel the need to hide their anguish and pain away because of the judgment of their friends and neighbors. It is difficult to not only find services and support but to find the strength to do so when each day is a battle to keep a chld safe from the illness that batters not only them but affects the entire family. We are only as good as a nation as we are good to our most vulnerable citizens...our Sophie's. We will continue the fight but it is a difficult one and can be discouraging. I hope that many readers share this with those who are unaware that this is a huge issue. Take good care, Cinda
Cinda Johnson
Cinda,
You are so right about not being able to see beyond "the swamp!" I hope that those of us with loved ones with neurlogical illnesses will share our stories so we can end the stigma and secure needed services for our children.
--
Susan Resko
Executive Director
This would be a horrible choice for any parents to have to make. There is still so much work to be done to education the public about childhood mental illness. there are still therapists and doctors who do not get it -- that it is not the parents' fault.
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Debra
Mom to 18 yr. old son with bipolar disorder, currently not taking meds.
Debra,
I could not agree more. Its hard enough for parents to fight this illness. Why are so many then put in a situation where they have to tear apart the family just to receive treatment? Thanks for your comments.
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Susan Resko
Executive Director
I can certainly relate to Lori and her desperation to get her young child help. My son's symptoms are severe and persistent, and he was the victim of a lot of mistreatment by adults form preschool on. Nobody wanted to accept that he had an actual legitimate disorder. They villafied him convinced that he was a discipline case, and scorned me. It was virtually impossible to find a child psychiatrist, and when my son needed hospitalization at 8, I had to sit locked in an ER room with him for 8 1/2 hours while they looked for a facility that would take him. When they finally found one it was 2 1/2 hours away and the care was terrible. Everything is geared towards the treatment of adolescents and those with very early onset are apparently supposed to wait until they commit suicide or become a teenager before they may receive adequate treatment. The strain of trying to keep your child stable, while helping them reach typical milestones, develop socially, arguing with doctors and the school is too much for a superhuman let alone ONE mom. My ex-husband has nothing to do with our son and won't help in any way. Recently I suffered a stroke due to years of nonstop stress, and caregiver fatigue. I had to ponder this same question...would I be able to recover enough to take care of him, or would I have to relinquish custody? Thankfully, I am on the road to recovery slowly but surely. Some days I get really ill, and on these days that fear of having to give my child up overwhelms me. My heart breaks just thinking about what these parents must have felt, and what anguish they must have gone through. It's hard enough letting go when your bipolar child turns 18, but 7?! How horrible that we live in a society that treats a medical disorder as if it were a mere character flaw, and how horrible that this country values improving the quality of life of children in other countries more than our children.
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Rachel, mother to Jaden; 9, diagnosed at 6, Asberger's, Bipolar, Developmental Disabilities, on Tegretol and Tiffany; 20, diagnosed at 7, Bipolar no current meds
My husband and I have 3 children. Our adopted oldest child is 18 and has bipolar disorder. We also experienced some of the challenges that the Gertz family experienced. For the past 6 years, we have watched our oldest struggle with this illness. We also had to deal with his violence against his younger siblings and us. We needed to protect our youngest two from his physical and verbal abuse but we also needed to protect him from himself. It felt like we have had to "choose" between children. We have been to several psychiatrists, psychologists, therapists, mental health crisis workers, hospitals and others seeking help and support. We have spent countless thousands in this quest. We even moved to a location where we knew we would have better school support. Even with all of this, our family life was miserable. We were told by all the professionals that we were doing everything we could but we were still living in crisis daily. Finally, when he turned 18 and had another "meltdown" we gave him an ultimatim to obey basic rules or move out. We gave him a month to choose and he chose to move out. We love him so much and miss the person we know is underneath the illness but our family life is now so peaceful. We have had to deal with the feelings of guilt and loss but one joy in this is watching our two youngest start to heal. They have a ways to go but the fear is starting to recede. I feel for the Gertzs' and wish that there were a way to find residential treatment without bankrupting families or forcing them to relinquish custody.
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Love My Family!
The stigma of mental health is something I have to deal with in my family. My daughter is 8 yrs old dx as Mood Disorder, ADHD,ODD,SPD. She has been hospitalized twice in a partial program and twice as a inpt since Sept 2009. As heartbreaking as all that was she was fortunate to get the help and we also had to once wait in the E.D. overnight for a bed and it was also 2 1/2 hrs away. My heartbreak alone watching all this is also watching my older child(16 yrs old son) isolate due to her behavior towards him but not only is most of my time spent with dealing with her issues with counseling / fighting the school for help ( she was denied a IEP and 504)I also am being sued for custody of her by her father because he does not want her medical records to have any of these dx's and believes its me making it up and we are going to trial !!( my son has a different father) He states her behavior is normal 7-8 yr old behavior and wants her off medication and I make it sound worse then it is because she doesnt act this way with him(that he will admit) so it must be me !! My worst fear is he will win because of finances, I have almost run out money and that was only on pre trial stuff and still have 7months till trial and he has a smart lawyer and I may have to go solo !! All this because he feels our daughter wil be labeled her whole life as having a mental illness, so guess its better to hide it then to receive help in his eyes and society. Its a shame.
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Tracy
Living with a child with BP, ADHD, OCD, Seperation Aniexty, Seasonal issues is overwhleming. I feel that I have been in a war for years! A war that is never ending and will never end. This battles is done with insurance companies, therapist, doctors, schools, family friend and with children!. Everyday all day and night this illness impacts our family. My husband and I live in seperate states so our daughter can get state insurance (his droppped her due to her "at risk nature"), our friends think we spoil her too much the school thinks it is bad parenting ..you get my drift! Last year we had to hospitalize her for 10 days and contemplated residential treatment for her safety and the safety of eveyone but at soon as they told us we would have to sign over guardianship we back away from this...it was bad enough making the decision to live seperate from my husband but to lose my daughter becuase she has an illness was just too much for me! I feel for and can relate to Lori's story. Something needs to happen to help our children!
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Mendy S in Indiana
Susan,
Thank you for bringing this plight to national attention.
I also wanted to comment that it's a sad moment in our society when those of us who live in states that do not force relinquishment must "threaten" (ie. provide two or more professional written opinions) to make a residential placement before the mental health system will pay for the needed supports to keep the child at home and in the community. Like you said, if it were any other medically necessary treatment that the child was being denied, the media would be all over the injustice of it. But, "no", they are not and our children often have to become very ill, indeed, before they can access the necessary services and supports. In addition, community-based supports are very much less expensive than residential treatment, so these regulations make no sense at all!
I also worry about the long term implications for a child who is receiving inadequate treatment because of how our system is structured and because of the stigma attached to these disorders. I keep thinking about all the research into the Kindling Theory and feel a strong sense of urgency to make sure ALL children with mental illness are properly IDENTIFIED and TREATED as early as possible to maximize outcomes and minimize long term costs/impact. We tend to be a very short-sighted society, especially in regards to expenditures, outcomes, and mental health care.
Sincerely,
Cindy Wolf, BS. in Health Planning & Administration, MS Ed. in Special Education,
Widowed mom of three wonderful kids who happen to have multiple disabilities
http://sites.google.com/site/wolfpack3rus
Your family are in my thoughts & prayers. I, myself, am having to have my son put in Treatment Foster Care. I know it is what has to be done, but it doesn't make it any easier. Best wishes for you & your family.
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Sonya MacLeod :)
Our son is in desperate need of being in a RTC as he is unable to function well at home but our private insurance says they don't pay for long term care that we have to go through community services to get him the help he needs. Our state agencies say that because my husband and I are both employed and we have private insurance that our son doesn't qualify for any services so if we can't afford to pay for RTC on our own then they say our options are to allow him to get a criminal record and then he will get help from the state or to give up our parental rights and turn him over to the state. No paretn should be put in the position of having to make these types of choices. Our son's illness is severe due to choices his birth mother made not him and not us so why is there no help for children like him. I refuse to grasp that there are no other options, my heart breaks for Lori and her family and the awful choice she was forced to make. I see the reaction when I have to tell my coworkers that my son is once again in the hospital, when other employees have family members who are in the hospital we send flowers, cards, etc but when my son is in the hospital people just don't get that it is jsut as painful for our family as having a child with a terminal illness because I feel just as helpless as a mother in that situation feels. This article at least let me know that yes others are dealing with the same issues and I wish that we could make the american public understand.
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Sharon-Mom to Lukas Age 15-Schizoeffective Disorder with Bi Polar, currently on Lamictal 400mgs, Thorazine 100 mgs, Inderal 40mgs. Vistaril for agitation when necessary.
Anna-Age 14-ADHD with mood disorder currently on Seroquel 300 mgs and Tenex 1mg.
We have had to place our daughter in the foster care (DCF) system to get her the help she needs due to behaviors we could no longer deal with (rages, violence toward us and our other children, threats). RTC was suggetsed to us strongly, over and over, but we could not afford it despite 2 incomes and good health insurance (it's not covered), so this was our only alternative. Still, she never went to RTC. She has been in 2 different foster homes and lives an hour and a half away from us. Because we did this we also endured a DCF investigation for child neglect. No family should be made to suffer in order to get their child the help they need and deserve.
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Midwifemom
DD16 ADHD, BPD, Anxiety
on Trileptal 450mg bid, AderallXR 20mg daily, Depakote (titrating up)
DD13 Anxiety
on Lexapro 10mg daily
DD5 (blissfull and amazing)
DH of 18 years (supportive and perplexed)
I am facing this choice now... My son is 10 and he is a BIG BOY. About 5 feet 5 inches and 170lbs. He is my world and I honestly dont know what I would do without him and yet I find myself having to make the decision of whether to put him in residential treatment or not. I never imagined when I looked my beautiful baby in the eyes 10 years ago that I would have to call the police on him to keep him from hurting me or my family. But I have had to do that twice now. So you are left with the choice, and left feeling like a failure, and guilty like if you were a better parent your child would be ok.... But I know that I am being the best mom I can be as Lori Gertz was the best mom she could be. I respect your courage and strength. Thank you for telling your story and making me feel less alone in this world.
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ANDREA
After my then 15 yr old daughter broke my nose and was put on court supervision she then within a week broke her 18 yr old sisters foot and broke 3 out of 4 kitchen chairs. The states attorney came to me and said that I needed to file what they call a no fault of my own with DCFS and make them guardian of Shelly so that we could get her into an RTC. The case worker that was assigned to the case was young and had never dealt with mental illness before in a child. She kept trying to tell me, the states attorney and the judge that my daughter didn't need a RTC that I was a bad mother. Well that changed after my daughter attacked the case worker and within 24 hrs they found a RTC for her. She has been there now for 6 months and I have seen great improvement in her. But her therapist and pdoc all say the same she will be in the RTC for at least another 8-12 months. It saddens me that she cant be home but I want her to be safe and happy.
mom -depression caused by thyroid disorder
older sister 19
Shelly 16 bp extra rapid cycles odd add
lamtical and resperidone melatonin
I was so happy to read this article. I now know that I am not the only one. We had to relinquish our rights. It was an up hill battle. They did exactly what you say, blame the parents. We were even threatened with abandonment charges. All I want is help for my dd. I am starting the healing process in all of this chaos. Thank you for bringing this to national attention.
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Ami R
DD 14... bipolar
While I didn't have to relinquish my rights, people still think that sending my daughters to residential treatment was a choice. It was not a choice. It was the only thing we could do to keep them, and our youngest daughter, safe. I wish more than anything in the world that they did not have to be thousands of miles away from us, but the system being what it is, this is the only option. There is very little "choice" about it. I didn't hear about this story until today. I commend the Gertz family for speaking up - I know it must have been, and will continue to be, a heartbreaking journey for all of them.
Jennifer
Brenna, 15, BP/Schizo-affect - Saphris, RTC
Ailish, 14, BP/OCD/GAD - Lithium, Trazadone, Abilify, RTC
Kieran, 11, healthy