Managing
Timothy has had rages since he was two years old. I remember the first time I realized he was raging out of frustration or anxiety – he was a tiny little thing, with a head full of brown curls. He didn’t have very much language yet; maybe a word here or there, and he was frustrated. His teeth were bared, and he was stomping around. He fled up to his room and slammed the door. When I went in, he pulled the twin size mattress off his bed and threw it at me. I was amazed at the sheer force he was able to get behind it. I think that’s why it sticks out in my mind.
For such a little thing at birth, he sure made up for it in growth spurts. He was 5 pounds, 5 ounces and 21 inches long at birth. At 15, he’s just shy of 6 feet, 250. As he grew, so did his rages, and our ability to keep him from hurting himself, us, or others lessened. We were trained in how to administer a therapeutic hold, something we had to do infrequently, but used at times when he was so violent he was in danger of knocking himself out or seriously injuring one of us. But it became impossible for us to do that by the time he was 12. Tim’s pattern has always been to rage and flee. First punch dad so hard that he hits the hardwood floor with his elbow, causing permanent damage, then run down the street in stocking feet, in three inches of snow, at night; or beat on his sister’s locked bedroom door until his bruised fist has gone through it, then run into the yard, swearing at the top of his lungs, taking the medication I was trying to get into him with him to fling around the garden.
One evening, after we had admitted Tim to the hospital for the ninth time, we realized we couldn’t live like this. We weren’t helping Tim. Our daughter was showing signs of PTSD. I was on antidepressants. Tom was drinking more than he should. We’d isolated ourselves in our home. We were slowly crumbling under the weight of Tim’s disease and our inability to ever escape it. Tim had never spent one moment – with the exception of 5 hours a day at school – without either Tom, I or both of us glued to him since he was 8 years old. The two times we’d tried to leave the kids home with our oldest baby sitting just to go to run errands on a Saturday afternoon ended up with phone calls about rages that weren’t fair to our teenager to have to try and mitigate. We’d missed band recitals, invitation to picnics and birthday parties, skipped Girl Scouts and ballet because we couldn’t guarantee we could be there for our other two children. I can’t even remember our oldest’s teen years (he’ll be 20 this fall) - they were so consumed by keeping Tim safe and trying to get him stable.
Even after we decided on residential, it took us about 18 months to get it to come to pass. Some was securing funding, some was Tim having a few weeks of stability and my using that as an excuse to put it off. He was hospitalized three more times before he went to residential. We found a wonderful facility about 90 minutes away that Tim is doing well at and we like very much. He’s been there for seven months and is doing well. They keep his mind and body occupied with endless activities, teach him academics and job skills, he plays on the basketball team, and he’s made a few friends. We talk to him on the phone four or five times a week, visit him twice a month and he’s come home for visits twice now, with the third coming up over Spring break.
Even now, with some time between me and the decision, I still second guess myself. Sending my child away is, in some ways, admitting that the disease beat me. I’m a hard-ass chick (ask anyone), and that is a hard pill for me to swallow. And while I don’t miss the broken doors, the late night calls to 911, the endless regimen of pills and doctors and tip-toeing around the mood-of-the-day, I do miss Tim’s endless Uno games, his random fits of giggles, his annoying back seat driving, and how affectionate he can be. I can’t walk upstairs in my home without staring longingly at his bedroom door. My rational side knows – this is healthier for him, healthier for me, healthier for my other two children, and it’s not forever. Eventually, Tim will come home to stay. But in the mean time, we’re all beginning to live our lives again. Tom and I went away for a long weekend for the first time since 2001. We go out to dinner and make spontaneous plans. We’ve started seeing our friends again and we’ve made it to our daughter’s choir performances. This break is about healing, for everyone. I try and keep the rational side top of mind. We spent so long letting mental illness manage our lives. Now, with the help of distance between chaos and now, and the help of an excellent facility and staff, we’re all learning how to manage it instead.
-- Chrisa
Wow, Chrisa, you have described my life with my own Tim very well. Fortunately for us, we found some measure of stability after a move to PA where there were better supports available for us at home and in the community, with a partial hospital program for school, a medication change, and wrap-around services. Now almost 17, my son has been stable and functioning independently in almost all settings for the past 2 1/2 years, with only a few blips on the bipolar radar that were induced by stress. To this day, however, his siblings and I still deal with the PTSD side effects of the chaos that unchecked bipolar disorder wreaked on our family.
--Cindy, widowed mom of three wonderful kids who happen to have multiple disabilities.
Cindy: so glad your Tim is doing well! So far residential has been what we all needed. Tim is learning better coping skills and getting far more accurate med changes (incremental now), he's weathered March, which has always been tumultuous for us, and he's feeling more in touch with the issues that come with schizoaffective disorder and handling the ups and downs better. I can't wait to see him Friday - he comes home for a 5 day visit!
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Chrisa, 42, Chicago Suburbs, Internet eCommerce Professional
Mom to Tim, 15, Developmental Disability / Schizoaffective Disorder, Clozaril, in RTC
Also mom to Di, 14, RAD; Alex, 19, college freshman
Married to Tom, 42, SAHD and high school pole vault coach
Chrisa, your story brought tears to my eyes. My story is the same up to the part about the residential treatment. Pdoc hasn't suggested it yet but it may not be far away. Michael has so may abandonment issues because of his past CPS history before the adoption. I think it would kill him and me to put him in residential but then of course he may kill me anyway. Better me than him, I suppose.
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Synthia Stokes
Mom to Michael, Age 8, EOBP, ADHD
Intuniv, Geodon, Strattera, Tripliptal, Desmopressin
Mom to Maddie, Age 10, ADHD, RAD
Intuniv, Strattera
Oh Synthia....sorry you are struggling. We brought Tim home from the hospital the day after he was born, so he doesn't have the RAD issues that our daughter does. She's definitely RAD, not BP.
I hate to hear you sounding so defeated. For us, residential has been a good thing. Tim actively expresses his desire to be more independent from us, even when he is very homesick. For us, it was residential or ECT - seriously, that's what we were discussing with the doctor. There was no way I could even consider ECT before we tried residential. So far, so good, but we have a ways to go.
Hang in there....
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Chrisa, 42, Chicago Suburbs, Internet eCommerce Professional
Mom to Tim, 15, Developmental Disability / Schizoaffective Disorder, Clozaril, in RTC
Also mom to Di, 14, RAD; Alex, 19, college freshman
Married to Tom, 42, SAHD and high school pole vault coach
I am new to the site and yours is the first blog I came across. Wow. It's hard to believe that other people out there live like us. My daughter is on her second residential stay. She seems better than ever and I really hope it sticks. I am glad to hear your son is doing better! It's good to have the light to shine into the darkness sometimes!
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Katie
Mother of Marissa....my special girl.
This is my first attempt at blogging. I am a mother of 4. Two boys and two girls. My oldest is 18 years and my youngest is 15 months. It is my second oldest that has been diagnosed with Bipolar. He is 10 years old and we have had years of riding the medical roller coaster. Through the years we have heard several suggested diagnoses from different doctors ranging from pediatricians to neurologists to psychiatrists. We have been told Oppositional defiant Disorder, Asperger Syndrome, ADHD, generalized mood disorder, Sensory Integration Dysfunction and on and on. About a year ago we finally got the diagnoses that he is Bipolar.
My son N has had behavioral problems since the young age of 2. We started seeing doctors when he was 4. N would have the most violent tantrums that left my husband and me speechless and scared. He had unusual strength for his age. He would tear apart his room in rage. Through the years we had to learn how to safely hold him down to keep him from harming others.
N is about to turn 11 in a couple of weeks and he is a strong boy.This past year has been eye opening for us. We have realized just how serious his disorder is. He has the aggression form of Bipolar where is stays almost in a constant state of agitation. He acts out violently and verbally. From the time his was 5 he has said the most horrible things that you can imagine. The kind of things that you know there could be no possible way he made that up himself.
Monday our lives were changed by an incident that happened out of anger. In the past he has said ugly things but would never act it out. This time was different. He got angry with being told to do his homework and then being reminded that he has dish week. You think that that is no big deal...right? Well, he started screaming at me telling me he wasn't going to do it and I called my husband to tell him that he was having issues. I turned around and he had pulled out a steak knife and started walking towards me telling me to get off the phone. He then turned the knife in to his chest as to hurt himself. I acted as calm as I could and told him to stop it and told him that behavior wasn't going to work. He then put the knife away.
His psychiatrist has recommended hospitalization. This is a battle in itself. Insurance and finances pose a problem. Has anyone got any suggestions to get around the battle? Aslo, the doctor has changed his medication from Trileptal to Lithium. Does anyone have a child on lithium? I am so worried about putting him on this drug. I do know that he needs something that works though. He also takes seroquel at bedtime to help him sleep. Before seroquel he would stay up all night.
Anyway, thanks for letting me share with you.
Katie - so glad you found us! We are a small but fierce group, banded together in this strange way. Welcome!
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Chrisa, 42, Chicago Suburbs, Internet eCommerce Professional
Mom to Tim, 15, Developmental Disability / Schizoaffective Disorder, Clozaril, in RTC
Also mom to Di, 14, RAD; Alex, 19, college freshman
Married to Tom, 42, SAHD and high school pole vault coach
Hope - all I can offer in the way of advice or support is to ask, does your insurance offer mental health benefits? If it does, the Mental Health Parity Act of 2009 requires all insurance companies to have mental health benefits they offer be equal to the physical health benefits. Is your insurance company denying hospitalization? Do they know he's threatening his life and others? I just told another mom, my kid was always admitted when he showed up in an ambulance or police car. Hard to say he doesn't need it when he shows up that way.
Find out exactly why your insurance company is saying no and talk to your pdoc - maybe a direct admit is difficult with the insurance company, but coming in through emergency may be the answer. It's a stupid game, but eventually, you learn to play it, even if the rules don't make sense.
Best, Chrisa
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Chrisa, 42, Chicago Suburbs, Internet eCommerce Professional
Mom to Tim, 15, Developmental Disability / Schizoaffective Disorder, Clozaril, in RTC
Also mom to Di, 14, RAD; Alex, 19, college freshman
Married to Tom, 42, SAHD and high school pole vault coach
Wow . . . this is my first blogging experience, but I have posted in the forum and the support group. Reading what you all have written leaves me teary-eyed and heavy hearted. I'm so sorry our chidren have to endure all of this, both our "typical" and "not-so-typical" children. I often wonder why, as I'm sure many of you do too, do we all have to endure this. I don't have an answer, but I know that God has given my children to me for a reason. I laughed when one of you talked about Uno games, uncontrollable giggling, and endearing love. That's my son, too. I try to hold onto those moments to get me through the tough times.
Thanks for sharing your stories. It truly helps to know we are not alone in this.
Be well,
Nichole
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Nichole: 39, mom
TJ: 8, mood disorder-nos, anxiety, ADHD; currently not on meds; moving toward a gluten-free/dairy-free diet with no food coloring and trying some vitamin supplements.
Public school setting, MA
AM: 7, healthy, no mental health issues, but I worry about how my son's behaviors affects her overall well-being.
Husband, T, not always on same page, but tries to be as supportive as he's able to be. Sees a lot of himself in our son.
Thanks so much for sharing your story about Tim and your family. This disease did not beat you. You could not beat it and why should you have to? Hard-A or not, at some point you needed more help than you could give. You know what I mean.
It thrills me to know you are having dates and trips with your husband. It thrills me to know you can enjoy your other kids. I'm sure they are happy to have you with them. It thrills me knowing you can enjoy friends - yay!
It sounds like Tim is in a great place, learning to be independant, having his own fun and learning to manage his disease. Visits home are also a learning experience although they may be rough sometimes.
Most of all, you sound happy and relaxed. I am glad you are enjoying life.
P.S. This is the first time I have checked out this blog ;)
Bestest,
Kathy
Co-Mod CABF Very Young w/Kathleen, Celia, Amy, Will
Co-Mod CABF Very Young 2 w/Amy, Janice, Will
Co-Mod CABF Support 2 w/Vicki, Jim, Donna
Co-mod CABF Adoption w/Chrisa
Cody 5, DX: BP Disorder NOS, SPD
Current Meds: Lamictal 150 mg, Seroquel XR 600 mg, Lithobid 600 mg, Klonopin (prn), Klonopin (time release)
*Tried Clonodine (paradoxical reaction), Risperdal (deep itch when hot & gets tic), Zyprexa tabs (allergy) Abilify (akathisia - a state of motor restlessness, sometimes produced by neuroleptic medication, that ranges from a feeling of inner distress to an inability to sit still.), Lithium Carbonate 450 mg. Intuniv (caused mania/hallucinations, insomnia, weight gain, irritation, aggression)
dandkcraig@hotmail.com , Arkansas
Bio: http://www.bpkids.org/user/29357
I am quite literally going out of my mind. My daughter has been diagnosed with BP disorder, before that it was ADHD and maybe Asperger's. I didn't want to believe the BP disorder, but I can't think of any rational reason for her to act the way she does. So far she's had 2 inpatient hospital visits (for 2 weeks each) and many trips to ER and emergency therapy. I've been trying to keep her outpatient and in regular school for years. But it's been hard.
What I don't understand is her irrational behavior. The outrageous rage moods that start with her hating me and end with her hurting herself (or threatening). The mean things she says to me, I cannot even repeat to any company. Sometimes she is okay, other times she is tolerable, and then there are times where she is off her rocker (for lack of a better term).
I am tired, beyond tired. I feel like I am primordially exhausted. My cells are tired. She does go to her father's 4 days a week which has literally saved my sanity. He is no treat either, but I am long past caring, it just is that bad. But even with her going away for part of the week, when she is home, she is beyond difficult.
I feel like my life is spinning out of control. I enjoy nothing anymore and I feel like I have nothing to look forward to, ever. I worry about what is going to happen to her - she is supposed to start high school in the fall (if she doesn't get kicked out of the 8th grade this spring, which is a realistic possibility). I am paying for an expensive all girls high school for her to try to get her on track (boys are like crack cocaine to her). I am spending money that I do not have, just trying to get things "stable". At one point I had case management and they recommended RTC. But, my fear is that she will then be with kids that are badder and do worse things.
I feel like I have no options, that this madness will continue until I die. My health is on the absolute fringes - I just feel like a wreck. Moving (as in walking and functioning) is very difficult, because I need to save my energy for what greets me at home. And the weird thing is that it can be good, or it can be okay. Then one little thing and we are off to the races.
Interestingly enough, things are actually better than they have been in a long time. But, I just had another "episode" on Wed after 2 months of relative calm and that sent me off the deep end like none other.
Yes, we do therapy, she does individual and then we do family together. She sees a psychiatrist monthly. I talk to her psychiatrist every single Friday. I feel like i have done EVERYTHING I can and yet, I don't think it is going to be enough.
At this point, I would GLADLY turn her over to RTC and I feel horrendously guilty about that. I feel trapped actually, because I love her so much and yet she is destroying my life. I hate to write that and put it out there on the internet, but it is true.
Rose's Mom:
The guilt sucks. Flat out. No other way to put it.
What it came down to for us is - and reading how you feel hits so close to home - is it was him or the rest of us. It was Sophie's Choice, in a way. Tim's illness was impacting all of our health. We could either keep him at home and keep struggling through every day, or we could find an RTC for him and start the healing process for the rest of us. Our marriage was hanging on by a thread. Our daughter was a recluse. Our oldest son literally moved out for months at a time. We didn't have a family. We had a ward where amateurs were drafted into dealing with the chaos that came with Tim's instability.
At some point, you reach the point where you realize that you alone can't make the difference. If your child can't be stabilized by a doctor, therapist, medication, and accomodations at home, after years of trying, without change, something has to change.
It's not selfish to try and preserve YOUR mental and physical health. Let's face it - without you, who does your child have?
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Chrisa, 42, Chicago Suburbs, Internet eCommerce Professional
Mom to Tim, 15, Developmental Disability / Schizoaffective Disorder, Clozaril, in RTC
Also mom to Di, 14, RAD; Alex, 19, college freshman
Married to Tom, 42, SAHD and high school pole vault coach
How do you go about getting residential treatment paid for? Where can you find these places? We live in New England and need help with a nine year girl. We have been on so many different medications that I can not count. We have been to many psychologist and psychatrists I can not count. I believe we have found a good Psychatrist but is soooo far away. Ducky
We're lucky that, here in Illinois, there is a state grant program for seriously mentally I'll kids to help cover the cost of residential. But check with your insurance company. Talk to your school district. If your child can't be educated with the options your school district has, they may see residential as an option. It does happen.
Best,
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Chrisa, 43, Chicago Suburbs, Internet eCommerce Professional
Mom to Tim, 16, Developmental Disability / Schizoaffective Disorder, Clozaril, in RTC
Also mom to Di, 15, RAD; Alex, 19, college sophomore
Married to Tom, 42, SAHD and high school pole vault coach