Dear Dr. Archer,
I can't pour my situation into an email just to have you tell me you feel my pain like hundreds of other professionals I've reached out to around the world regarding my psychotic 12 year old daughter. She's currently in her third residential placement and three hospitalizations in crisis in the past two years.
Although she has been suffering with symptoms of schizophrenia since she was a toddler, I've battled the best of the best since she was 2 because they were ignoring the symptoms we were dealing with and kept throwing her on the spectrum. After six years of living in hell I demanded her brain be examined, which took her to the Amen Clinic in California for full brain scans. I feared she caused her own frontal lobe damage, due to her history of self injurious behaviors and head banging.
She was sent for an emergency brain MRI where it was discovered she has Colpocephaly and Partial Agenisis of the Corpus Collosum. Great. Now what? Nothing! Things have gotten worse since her diagnosis, and they use her brain damage to justify her psychotic behavior. This is unacceptable. This child has been in the care of neuropsychiatrists, psychiatrists, psychologists, therapists and nutritionists since she was 2 years old.
She's done every therapy known to mankind -- one on one, group, family, in home, out of home and on home. Equine and art therapy, the list goes on and on. She was started on medication when she was 2, and has been on everything, including cocktails, except Lithium.
She can teach behavior modification and she has already had three "casual" attempts on other children's lives in the past two years. I can wallpaper my 4,000 sq. foot home with her assessments, tests and reports from over the past ten years. The professionals are still scratching their heads. She can't participate in any studies due to her brain damage.
This child, despite her broken brain as she puts it, is an amazing kid. She's a stunning, talented singer and artist, and that throws people off. She's known as a snake charmer, engaging and sweet, and when she sings she melts hearts. She manipulates wherever she goes. The point is you can't teach an irrational mind to behave. No one is teaching her how to navigate through her world.
I do my best and can somewhat neutralize her psychotic breaks, but now she's 5 feet and outweighs me by 15 pounds, and she knows it. She attempted to kill me two months ago in a rage that was set off by her iPhone not working properly. I grabbed her hands and told her to THINK about WHO would care for her if she took me out. Her response was "good point" and went into a typical meltdown of guilt.
We are at a point where we're letting nature take it's course, and as crazy as that sounds it's the truth. We have excellent insurance that is getting tired of paying for her disability and wants to take her out of her program. I know that will be negligent because she WILL kill someone or herself and then I'll have to sue them.
I don't need the money. I need someone to study this child and advise me on what to do. I care because this child is capable of doing great things in this world. I would pay any amount of money for a consult. You seem to know more about this than many professionals we've been dealing with.
I've retained a lawyer for my daughter for her protection and the protection of others, but now what? There's no "ifs" where she's concerned, but "when." I'll keep mapping miracles for her, but things are only going to get worse. Thank you for your time.
Unfortunately there is no treatment for colpocephaly, although some children benefit from special education training. It all depends on the severity. As far as the partial agenisis of the corpus collosum – which is missing white matter in the brain that connects the left and right hemispheres – this can severely limit brain function integration.
I'm sure you've had very competent specialists work with your daughter, both in person and over the Internet. Unfortunately, Lauren, there's not much I can add.
I don't pretend to know all the answers because I don't. But what I do know is that some people are given obstacles in life that are seemingly insurmountable. Sometimes we get to a point where we feel like giving up because it seems hopeless.
You, Lauren, are stronger than you think. Do not give up on your daughter, because you are the constant strength in her life. Corita Kent said "Flowers grow out of darker moments." Whether she has one more episode or one hundred, your daughter is very, very lucky to have you as her mother.
Keep her in whatever therapy you find beneficial, hospitalize her when needed and if you must, for her protection, place her on long term care, but DO NOT GIVE UP! Always keep up to date on the new treatments and support and be grateful for each and every day and realize some will be better than others. Also, make sure to take time out for you on a regular basis.
You also have the ability to help others, to network with other parents who are going through the same thing. Go to the National Organization for Disorders of the Corpus Callosum. Become involved and work to make a difference in terms of research funding and supporting others. Just being with those who are experiencing similar circumstances will give you added strength.
I'm sure this is devestating for you, Lauren and I wish I had some concrete answers or better words of inspiration. We have one life, and for whatever reason, you were entrusted with the responsibility for your daughter, with all her troubles and gifts. When the chips are down, she depends on you. Never give up, Lauren, for her sake or yours.
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