Night Terrors and Heroes
“Will there be a time when I will ever stop worrying about my daughter?”
“Will my son ever be able to support himself? Will he find someone to love him? Will he ever be independent?”
“Will I ever be able to let go? If my daughter has children will I need to prepare to take care of them?”
These are the emails that I get from parents across the country, many of them written in the late hours of the night. If tears could leave their mark on emails I am sure I would see many stains. These night terrors that often last into the day are familiar to moms and dads of children with serious health issues; serious enough to land them in hospitals and treatment centers and serious enough to kill them.
Adding to the worry for a child with a chronic and severe health condition, often our sons and daughters do not know how sick they are or that they need help. Fear percolates beyond control when thinking about an adult child who is unstable and destroying relationships, perhaps with children of their own. I am not always successful, but I am constantly working on letting go.
I urge you, do your best to Let the Fear Go. It does no good. I know without a doubt that all my midnight to 3:00 a.m. worrying (is “fearing” a word?) does nothing. It changes nothing. I must breathe and I must sit with it and I must make room to take care of myself.
Here are some things that you can do that make a difference:
- Teach your child to manage their own health needs when they are young. It will serve them well in their future.
- Help your child build a support network that does not include you. It is a safety net for him or her and for you.
- Be honest with your child. Honesty is the best policy. It builds the best relationships.
- When fear overwhelms you, do something for yourself. Nurture yourself as you would like to nurture your child. You know how. You can take care of your child. Do this for yourself.
- Keep your eyes on those heroes out there who are living well with a serious mental illness. There are many young adults who are role models to younger children and adolescents trying to figure out what to do with a diagnosis that will be a part of them forever.
Here are a few of my "mental health heroes":
My daughter Linea is currently in Geneva, Switzerland, interning at the World Health Organization (WHO) in the mental health department. She found a counselor there she sees once a week. Prior to leaving for Europe, she worked with her treatment team (all FOUR of them) to get 4 months worth of medications, put a plan together should she need their assistance and to assure she had good contact information. She continues to be honest with us about her health.
I sleep well at night. I am in the final edits of our book and reading once again the chapters written when we almost lost our daughter. It brings back all the fear and pain but it also convinces me of how far we have come. She now has a diagnosis, a treatment plan, excellent doctors and therapists. We are beyond that initial guessing game that felt like a game played in the dark deep within in a house of horror. We have turned on the light. We know what we are facing.
Calen Pick, son of Jessie Close and nephew of Glenn Close, is another hero. At one point in his late teens it seemed impossible that he would ever be well enough to live by himself or have a life of happiness. I attended his wedding last summer, along with his loving family and many friends. He married a beautiful woman who loves and supports him, and he does the same for her. He is an accomplished artist and manages a large shop, a home and many animals. He speaks on national stages throughout the country, working to eliminate the stigma of mental illness. He is also the manager of his schizophrenia. As with any chronic illness, it takes a lot of time and effort to stay stable, but he is doing it.
Brandon Staglin is another of the many heroes out there who is living a large and healthy life while making a difference in the world of mental health. He works with the International Mental Health Research Organization (IMHRO), travels internationally, is married, has friends, a social life and is just really great guy. He also takes care of his health care needs and overcame a severe onset of schizophrenia (which he blogs about on IMHRO) when beginning his college career. He, like Calen and Linea, is a role model, not only for children and young adults, but for parents who are able to see a bright future for the many, many people who have mental illnesses and for their own son or daughter.
I know that these are terrible and terrifying illnesses and we parents would do anything to take this pain away from our kids but we can’t. I can only stay steady by working on it day by day, reveling in the quiet times and finding space to take care of myself. I would love to know how you manage the night terrors?
I don't handle it well, I'm afraid, but I've had to learn to let go a little bit since Tim has been in RTC. Lately, though, even the RTC has been leaning on me to help interpret Tim's behaviors and letting Tim contact me when he needs support, even during the day.
We're working with the RTC to try and put Tim on a schedule - call us on Mondays, Wednesdays, and Saturdays (not twice a day, as he had been), and schedule visits once or twice a month, reinforce his coping skills and recognizing his own symptoms, so that he can become an independent adult. This is a goal he wanted to achieve when he went to RTC, so we need to make sure to set him up for success by working together to come up with boundaries and rules and letting him achieve them.
But it's a struggle. I still want to pull him close and make everything ok if I can. I've even jumped in the car when his therapist has called and said he's struggling and won't talk to anyone there, driving 2 hours one way to sit with him for an hour until he can calm down and discuss his symptoms. I don't see that ever going away, at least, not from where I'm sitting today.
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Chrisa, 44, Chicago Suburbs, eCommerce professional, Anxiety (Ativan)
Co-Mod of Adoption Group with Kathy
Moderator of Psychotic Symptoms Group
Mom to Tim, adopted at birth, 17, Schizoaffective Disorder, Bipolar Type with Catatonia
Meds: Clozaril 600mg, Buspar 10mg
In Long-Term RTC since June 2009
Also Mom to Alex, bio, 21, living in Germany for a year-long internship
Also Mom to Dianna, 16, adopted at age 4 from FC, HS Sophomore, RAD, drug exposed, severely premature
Married 21 years to Tom, 44, HS Pole Vault Coach and stay-at-home-dad
Hi my name is Kathy, I am new to this site that was given to me by my daughter's therapist. I have a 14 yr old daughter that has been on medication since age of 6. I've been struggling with her behavior since she can walk and haven't stopped since. I can't remember all the medication my child has used because they've been so many, but now at 14 she's been on abilify 10 mg 2x' s a day and trileptel 600 mg 2x's a day. My daughter Kay is a very loving warm hearted young teen but when she has her moments which are so many times in a day watch out. Kay becomes very aggressive and physical with other kids, her sister and myself. Her diag are as follow, adhd, odd and Bipolar w/depression. Kay is very smart and is a great artist when she wants to be. She is very talented but gives up too easy and then shuts down. Has suicidal thoughts and begins to cut her wrist and legs. She recently got into a fight a school with another teen girl and it took 4 teachers to take her off the girl. It so happened the girls father was a police office and wanted to press charges of assault. The school then turned around and put my daughter on detention for 11 days and when she returned to school they wanted me to discharge her. I didn't know what to do so I had her committed to a Residential facility here in Florida. This was the hardest thing that I ever had to do as a Mother. I am a single mother of 2 girls and my oldest Dee has never ever caused any problems, you can say she is the perfect child. she has a 4 yr degree and has recently moved away from home. My baby Kay is the one that has been very difficult and has had so many issues through her 14 years of life. I pray every day that the doctors and professionals help me and find the right medications for her so that she can live a happy and productive life. I have so many many worries and afraid of what she may be capable of doing in one of her episodes that she often has in a day. I put her in the residential facility so that they can help me with her there, she has only been in 3 wks now and they tell me she is difficult and very defiant. She refuses to participate in her therapy and blames everyone else for her being there but herself. I don't want to see my daughter in prison for hurting or attacking another child so I believe this is the best thing that I could have done for her so that she can get the proper help that she needs. My fear is that when she does get to come back home things will be good for a little while and then she will go back to being verbally abusive and physically abusive all over again. Will this ever end.............
Hi Kathy,
I just want to say that I have a 12 year old who sounds remarkably similar to your daughter (except that my daughter has only been diagnosed with ODD and bipolar disorder, no ADHD). She is also very talented and artistic, and smart...when she wants to be. I can say that I have struggled with my daughter from the very earliest ages, and she has not tried to harm herself, but has been physically aggressive toward others, including me, her father, and her siblings over the years. My daughter is currently in a short term treatment facility, but I am trying to get her longer term therapy, although the cost is prohibiting this for now. Hang in there and know that you are doing your best as a parent for your kid. The doctors in the RTC will see her behavior and can adjust her medication much more quickly than could be done outpatient. I have the same fear that you have wondering if it will ever end, because my daughter will be discharged soon, and I don't want to go back through the same stuff all over again. I just want her to be well....
Kathy, thanking you for your comment. I was a little taken by the fact that the school suspended your daughter and then did not do a manifestation determination to decide if her behavior was caused or linked to her disabiity (bipolar, ADHD). You can find information about this here:http://nichcy.org/schoolage/placement/disc-details/manifestation Does your daughter have an IEP? It seems she is not receiving "FAPE" (Free and Appropriate Public Education) which specifies that if the district can't provide services to a child with a disability then they may need to provide this somewhere other than in the school. There are many people here at The Balanced Mind who could help you work through this if you haven't already. If you want more information send an email to the Family Helpline on this site. Here is the direct link: http://www.thebalancedmind.org/learn/frt-form
I wish you and your daughter the best and know that you have support and others who have experienced similar things at The Balanced Mind. Take care, Cinda
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Cinda Johnson