About our Daughter
I am mother to four wonderful daughters, ages 13, 15, 17 and 19, and wife to the greatest husband on earth. God has given us a special child to raise one who was diagnosed with early-onset bipolar disorder at the age of seven, though she showed signs of it from the age of fifteen months. She also has ADHD, Sensory Integration Disorder (sensory seeking), Dyslexia, and Non-Verbal Learning Disorder-NOS, all typical comorbidities for a bipolar child. She is in the very challenging teen years, and she is attempting a big public high school for the first time. In spite of the trials, she enjoys lacrosse, running, and reading and writing her own books. I will share with you the many joys and sorrows we have faced and will face in the future with the hope that you may find better understanding about this mental illness caused by both chemical and structural abnormalities in the brain. I desire that you will be encouraged by this blog if you are also dealing with a bipolar child. Thank you for reading and sharing in our journey.
How Did You Know She Was Bipolar So Young?
I wrote a long explanation of how we came to this bipolar diagnosis in a child so young under my post of March 19th of 2009. If your child or a child you know bears similarities, please seek out a good psychiatrist and don't wait for "things to get better." Often they will simply get worse, and the longer a child is unmedicated, the more damage their brain can accrue. Early diagnoses and treatment are key to providing these children with a chance at a successful life later as a teen and an adult.
Friday, August 28, 2009
Caroline had her first social skills therapy group meeting last night. There are three or four boys in the group, and Caroline. She seems fine with that. All of the boys have Aspergers Disorder. She has two male cousins with Aspergers so this is not new to her. She is definitely the highest functioning in the group as far as being outgoing and chatty. The boys were pretty quiet, apparently, and to be expected really. Two of them seem pretty brilliant, one of the common characteristics of many with this disorder. I think Caroline will be helpful in drawing them out in conversation. She is mainly there to work on socially appropriate ways of relating. Making friends isn't an issue for her, it is the keeping of friends. School starts on Tuesday and we are all hoping for a great start.
Posted by Megan at 8:05 PM
Now that Caroline is back, I am back to playing chauffeur to her many doctor/therapy appointments. I forgot how much I time I spent in the car with her prior to her RTC stay. Her back problem from the fall and spring has reappeared and after seeing the pediatrician yesterday, he said she needed to go to a chiropractor and a massage therapist to work out all of the knots in her back. Today she had an hour long massage ($75!) and the massage therapist said her back was the tightest one she had worked on in a long time, and that one of her vertebrae was sticking out weirdly. I could see what she meant. She wanted her to see a chiropractor ASAP and come back for more massage. Caroline really can't start running with this spasm thing going on, so we do have to pursue a solution.
My husband is mad that the pediatrician didn't give us a referral to the pain management group she was at before for physical therapy, because our insurance doesn't cover massage therapy or chiropractic. I got mad because I was just following directions. I think we are both stressed out at the end of a long week.
The family was supposed to go up to the annual Crab Feast tomorrow put on at Bill's aunt's house, which is about a two hour drive away. Caroline can't sit in the car that long because of her back, and that means I am staying here, which is probably best since the laundry is out of control again and the frig needs a major cleaning. I need "catch-up" time. My other kids will be mad at me for not going, but with school starting so soon, I feel like I need time to myself to prepare for the hard work to come.
Caroline has been much better without the dexedrine. She has been using her coping skills and has been very helpful and sweet. I think those first couple of days that made me so anxious were just a combination of the ADHD med and the shock of coming home. She has shown the person we saw at Meridell for the most part. She just came in and used an "I feel" statement about how she is feeling Bill and I griping at each other over several things this evening. No meltdown, just a simple explanation of why she was feeling what she was feeling. So refreshing.
Posted by Megan at 6:56 PM
Wednesday, August 26, 2009
The anxiety that I struggled with constantly before Caroline went to the RTC has come back. I find myself tense and snappy. She is better, but will always be bipolar, and there are things about bipolar kids that are so draining. Like the constant struggle with boredom. I know from email by other MOBPKS (moms of bipolar kids) that their kids also lack self-direction and are always complaining about being bored. They crave structure and a "plan" and if they don't feel they have enough, they feel very anxious and lost, which can lead to meltdowns. Last night she had her first real "meltdown" over this very issue.
She had gone the entire day without a "mission" and it drove her crazy. I had a busy day yesterday and was also seriously sleep deprived (I am definitely not sleeping as well as I did all summer) and so had no energy to go anywhere and do anything. I resorted to an old way of deflecting the situation by distracting her from her downward spiral with "let's go out to eat" which was not in the budget. I did it out of desperation because I felt paralyzed myself. I realized today I need to have a plan of action written down and posted somewhere so if my brain is foggy I can remember what I can do to help her that doesn't involve taking her out of the house and spending money, which really put a drag on our finances. At least this time I took the other ones with us so that they wouldn't feel like they were being left behind because of Caroline all over again. Today I planned a trip to the beach and Caroline was quite happy to spend hours boogey-boarding in the surf.
As for a daily plan, we are buying her a white board so that she can write down her daily schedule in her room every night and not be bugging me constantly about "what's next." My younger two entertain themselves far better than she does. School starts in less than a week! Yay!
Posted by Megan at 7:18 PM
Tuesday, August 25, 2009
My husband and I decided after the first two days that Caroline was home, to hold off on the dexedrine because she seemed very "up" to the point that we were concerned that maybe the ADHD med was too much. We always worry about stimulants inducing mania, and after all she has been through these last four months, we don't want to take a chance of destabilizing her. We may try reintroducing it in a smaller dosage next week to see if she was just excited about being home, or ramping up. So complicated!
Posted by Megan at 8:32 AM
As would be expected, Caroline is experiencing a letdown of sorts about being out of the routine she was in for almost four months, and back in the noisy realm of our home. She's been kind of down and grumpy, which hasn't alarmed me but definitely is a contrast from how she was during our visits with her in Texas. Gone is the spunkiness. She kind of mopes around, looking lost. I am also aware that she is back to trying to eat whatever whenever, which isn't good. I told her yesterday we were starting a strict meal/snack schedule that we would all be following. She was fine with that since she craves structure anyhow. I would hate to see her gain back the twenty pounds she lost, now that cross country season is upon us. She says she is out of shape, which I guess she means stamina and conditioning, because she looks fabulous. She hasn't run for four months so she will have some work to do.
I got mad at her yesterday when we were in Wal-Mart school supply shopping. She got agitated as soon as we entered the store. I need to remember that Wal-Mart is overstimulating, noisy, crowded, and too big for her. Target would have been a better choice, or even Walgreens. She becomes quickly frustrated by the confusion (and the messiness of the store shelves since there has been a stampede there apparently.) She kept snapping at me, showing no patience at all. I called her on it rather angrily myself. I don't think it is back to things as they were before, but I do think that she's going through a lot internally.
Posted by Megan at 8:10 AM
Sunday, August 23, 2009
We are almost at the end of Caroline's second day home, and so far she has remained calm for the most part and is showing a lot of maturity. The noise of our family has bothered her, and she will have some adjusting to do to her little sister's frequent squabbles. But really I feel so relaxed around her, so un-stressed, a huge contrast to how I felt four months ago. We will just have to see how she continues to adjust to being home.
Posted by Megan at 7:30 PM
Friday, August 21, 2009
Much to our surprise, the psychiatrist at Meridell was able to add in an ADHD med to Caroline's mix without negative side effects. When we tried to do this previously at home, she always became very agitated or manic. So when he said early on during her stay at the RTC, that he was going to try adding a stimulant after she was completely stabilized, we had our doubts. Dr. Stone said that they had found that if they could get all of the other meds just right, they were often successful in treating the comorbid ADHD so many bipolar kids have. I didn't think it would be tolerated, but so far Caroline is doing great with the stimulant and not having the agitation or signs of mania she had shown in the past. This is great news since she has always had a focusing issue. Hooray!
Posted by Megan at 9:10 AM
Tonight is the night and I must say I have so much to do. I want to get the house all in order so that she can come home to an organized place. We have a final meeting with Brandi to sum up her stay there and talk about her at-home treatment plan. Our lives are going to change again shortly. The break is over but hopefully this will be a new chapter for all of us.
Posted by Megan at 9:02 AM
Tuesday, August 18, 2009
In three days, Caroline will return home. I am truly looking forward to hugging her and making her feel at home again. Her little sisters are quite excited about this, the older one not so much, but we'll work through it. Caroline sounds so amazingly normal whenever we talk to her: no baby talk, no whining, so blame shifting, just a normal, happy teenager. We are just wondering if she can keep up the good work. The social skills group she starts through Southeastern Skill Builders should help a lot with this. See the link on the sidebar if you are interested in finding a group like this for your child. I wish we would have found this earlier.
My husband is still painting her room. He is a real perfectionist so he takes a bit longer than a contractor probably would, but the end result will be nice.
Off-topic: my youngest is pretty severely ADHD and we have been experimenting with her meds a little. Result: when she takes her stimulant in the morning, she is sweet and pleasant all day, very few explosions or meltdowns. When she doesn't take it, we have meltdowns all day. So the lesson is: she really needs her Focalin everyday even if it is not during the school year. Nice to finally figure it out. I had resisted giving this to her but it was to our detriment, not just her own. Sometimes we just need to medicate our kids if we want them to succeed in school, relationships, their futures. Not every kids needs medication, but there is no shame if they do.
Posted by Megan at 8:02 PM
Wednesday, August 12, 2009
Today my husband and I met with the Principal of the private school that Caroline attended for three days in April of this year. She was not in a good place then, and basically freaked out to the point that we knew she needed to go to a residential treatment center. Now that she is coming home after four months, we have to find a school for her, having ruled out the public middle schools in our area. We weren't sure if they would really take her back, even though it sounded like they would. I had to hear it in person. So, I am very glad to report that he was more than glad to have Caroline back. He was not fazed at all by the bad start last spring. So she will start on September 1st with her classmates, in a combined class of 7th and 8th graders, a total of thirteen students in the class including her. Perfect size, and hopefully it will be a perfect fit. We shall see. I just wish we could get back the $800 we put down last spring for one month of school and fees. Three days of classes is not a great ratio of education to cost.
Posted by Megan at 2:19 PM
Tuesday, August 11, 2009
We just told Caroline that she will be discharged from the RTC in ten days. She was ecstatic of course. Brandi told us she was grinning from ear to ear. We also broke the news to her about her gerbils no longer being with us thanks to her dogs. She handled that better than expected, even with the revelation that her older sister was at fault for leaving the cage on the floor. She said all was forgiven, no hard feelings. Whew! I guess that she is so glad about coming home soon that the gerbils were not such a big deal. Now we have a lot to do before she comes home, including meeting with the private school she was at for a week last spring to see if they are still amenable to her coming back. Hopefully this will work out. We find out tomorrow.
Posted by Megan at 10:43 AM
Saturday, August 8, 2009
Tonight during Caroline's phone call, she was quite down because she is very tired of being there and sick of having no idea when she is coming home. I could tell she really needed some hope that she wouldn't be there forever, so I told her it would be soon, that we have an actual date. She brightened up at that thought right away. We will tell her exactly when on Tuesday. I know she will go crazy.
Posted by Megan at 9:58 PM
Friday, August 7, 2009
My husband and I sat down with our oldest daughter last night to discuss the timeline of our impending move, including talking about the real possibility that she may have to switch schools mid-year. She is not thrilled with that idea at all. All spring, she kept telling me how she couldn't wait to move out to another school district, that she was so tired of her school where the majority of kids didn't care about their education, were lazy, and enmeshed in a culture of purposeful underachievement. She said she wanted to go to a high school where there were more kids to whom she could relate. But over the summer her opinion changed, because after she got her fall schedule, she became quite excited about her classes, especially two that are not offered in the district we are moving to. And she wants to remain involved in Young Life where she is now one of the only student leaders at her school after a bunch of seniors graduated.
We completely feel for her. Moving half-way through your junior year, and to a school that doesn't offer what you want must be really stressful and disappointing at the outset. I wish it didn't have to be this way. But the needs of our family as a whole outweigh the consideration of her desire to stay where she is. We want her to understand that this is not all about Caroline. She wants to blame Caroline for any of her problems. Caroline's needs are only one factor. We have about four other major factors leading us to move. I think it is hard for her to understand the big picture.
In addition, we talked about Caroline coming home in two weeks. This news got the biggest reaction. She became very upset at the thought of having her at home again. She began to cry and become very angry, relating how she feels that Caroline's absence has really improved our family life and her own life, and that she doesn't want her to come home ever. She brought up how her birthday last year was ruined by one of Caroline's meltdowns, and she can't forget that. We tried to help her understand that Caroline has changed, but she won't believe that she will ever be different. She thinks that as soon as she comes home, it will be just like it has been the last six years.
I feel her pain. I can understand why she is fearful and angry. But she doesn't seem to see Caroline's great suffering as equal and greater than her own. Unfortunately, she can't be talked into a change of opinion right now. She will just have to see how Caroline has grown for herself. We have asked her to be kind to her, because she is her sister, but also because Caroline really wants to have a relationship with her. Elizabeth needs a lot of affirmation of her own pain, as well as to be challenged to put away bitterness.
I agree that the break from her has been healing and necessary. But now we need to bring her back into the fold and resume our family life with her in it. She has a place here and always will. Someday Elizabeth may hopefully understand why we made the decisions we did.
Posted by Megan at 8:26 PM
Thursday, August 6, 2009
We talked this morning with Brandi, Caroline's psychologist at Meridell Achievement Center. She said that she felt it was time to schedule a departure date for her, that she had really accomplished her treatment goals there. We suspected that she was going to tell us that, so it came as no surprise. However, instead of coming home at the end of August, say the last weekend, she is likely coming home in two weeks, on the 21st! The reason is that the school she will most likely be attending starts up September 1st, not September 8th, as I had thought. We feel she needs to have at least a week at home to adjust to being here again before starting up school. The school at Meridell starts back up in full swing August 20th, so we figured that my husband would fly out on the 20th and have a final meeting with Brandi, and fly back with Caroline on the 21st.
I was expecting about three or four more weeks before she came back, or more, so now we have to hustle and finish painting her room! And the other kids will need time to process this new information and prepare for her homecoming too.
I am sure when Caroline finds out on Tuesday about her impending departure, she will be over the moon.
Posted by Megan at 1:23 PM
Wednesday, August 5, 2009
We have been in the process of trying to move into a better school district so that we no longer have to pay three private school tuitions, which is more than we can handle. We had hoped that we would have moved by now, but we experienced some setbacks and delays due to some circumstances beyond our control. So now the beginning of school is staring us in the face, and I was in a panic, but we have decided that to try to move out of our house and into another by September the 8th is not realistic. We weighed the rent option but we keep coming back to selling and buying because of some financial considerations and job issues.
Actually, this is probably better that Caroline won't be having to adjust right away to not only being in school again, and being a part of our family again, but also a new house and neighborhood. One thing at a time. If we are here for the fall, I will homeschool my two youngest until we move. My oldest will stay at the public high school she was, and we will just see what buyers come our way. My husband has been working hard for two weeks on little repairs, painting, and on sprucing up our landscaping, so at least we've made a good start. I am glad that we can do this in a less-stressed out manner. Also, the housing prices may come back up this fall which would be helpful.
So Caroline will get to come home to her too-small bedroom, but only for a short period of time we hope. She'll probably just be glad to be home.
Posted by Megan at 6:30 PM
Tuesday, August 4, 2009
In our phone conference today, Caroline brought up that she was quite anxious about knowing when she might be coming home. Her psychologist there said that this was something we probably needed to start talking about (with Bill and I), and we set up a phone conference later this week. She said that she would be asking Dr. Stone, the psychiatrist there, what other med adjustments he might want to make, if any, and to call us for a consult. It does sound like Caroline is nearing the end of her stay at the RTC. After this weekend, I am actually looking forward to having her home again. She was really changed.
She also asked us if there was anything else that we thought Caroline should work on before coming home. We both replied perfectionism. We see this as the biggest danger for her right now. And having a realistic understanding of how her sisters are going to need time to see that she has changed. They don't know how she has grown. A lot of adjustments are in store for us.
I just added up the cost of the trips we've made out to Meridell since May. They pay for one adult airline ticket once a month, and give us a discount at the Holiday Inn in Cedar Park, but even so we have spent over $800 on the hotels and car rentals alone. The meals and activities and shopping for her probably added several hundred more. Expensive trips but worth it. I am so grateful that our health insurance covers all of her RTC stay. We won't end up paying a dime, which is fantastic considering I am sure the bill is in the tens of thousands. I feel for the parents of bipolar kids whose health insurance doesn't cover RTC stays because they then have to find funding through their states and it is often a nightmare of bureaucracy and delays.
Posted by Megan at 7:23 PM
Monday, August 3, 2009
I just got back yesterday afternoon from Meridell for our once a month visit with Caroline. I have to say that the visit was fantastic. She has noticeably changed. Gone are the inevitable meltdowns and explosions at the littlest things. I was never tense around her or wondering what would happen next. She was pleasant to be with, calm, self-controlled, and just plain happy. I was a little taken aback by how slender she is. I haven't seen her cheeks so drawn since she was doing gymnastics six hours a week at the age of seven. She has dropped from a size nine to a size one in three months. I brought up her rapid loss of weight with the nurse because if she continues to lose pounds at the rate she has been, she will soon be underweight, which concerns us. She didn't seem to be acting like she was anorexic at all, no food aversions, or counting of calories, so that was reassuring. I guess the new meds combined with the strict meal/snack schedule has helped her shed the weight she gained while on Seroquel. She is still on a much lower dose of this.
The only little hard part of our visit was when we were shopping for running shoes and ended up in Plato's Closet, an upscale consignment store for teens. The heavy-metal music and the confusion of the way the store was set up, and a wicked thunderstorm all combined to put her on edge. She doesn't do well with a lot of noise and confusion. She began to get grumpy about everything, and wanted to leave the store, which was fine with me. When we walked out, I couldn't remember where I had parked, so we were searching in the poring rain. Caroline became frustrated with me, but then quickly corrected herself and became very upset that she had become upset with me. She said she had promised herself she wouldn't get mad at me this weekend and felt like she had ruined her whole off-campus pass because she had failed at this promise.
I was sad that she was so perfectionistic about this, having an unrealistic idea that it was bad to become frustrated with someone. She has been taught to work on her "thinking errors," to catch them quickly and correct them, but she is confusing "thinking errors" with normal human emotions that we can't help feeling. Our emotions aren't wrong to feel, I told her, it's what we do with them. She couldn't seem to shake her self-blame and continued to sink in a downward spiral to despair over this. We really like her psychologist at Meridell, but we aren't sure if Hannah is getting the message about being balanced enough. Caroline said they only let them vent and cry for ten minutes or so, and then they have to pull themselves together and talk about how they are viewing things wrongly. Maybe she needs more time to just cry and get it all out.
Anyhow, I realized I had to put her in the car and take her for a little drive so she could get it all out, because she was stuck in the emotional vortex and we needed to talk about giving yourself grace. So we drove out past lots of cattle and cactus, while she sobbed about how hard it is to always have to be working so hard on your "thinking errors." I affirmed her and told her she had to let go of this perfectionism about relationships, that it didn't bother me in the least that she got frustrated with me, or that she was in a bad mood for a little while, because that is NORMAL, and to expect herself to always get it right is too great of a burden. God has GRACE for us, and we give grace to each other in our weaknesses. She cried for about an hour, and then she said she felt better, and after that she rest of the weekend went without a hitch.
One thing we are working on with Caroline (and all of our kids for that matter) is accepting boundaries when it comes to their "I wants." I have had a pretty unhelpful way of dealing with the tremendous stress in my life by shopping. Not big spending sprees, loading up on flat-screens, or designer hand-bags, but little shopping sprees, at discount stores, mind you, but more often than is wise. We are trying to really bring our kids on board helping them to understand that they have to help with our saving and spending goals by agreeing to accept the boundaries we give them when they "need or want" new whatever.
Especially with Caroline I have struggled with the "no" word. In the past, when she would have the downward-spiral "my life sucks," or when she had a new obsession that she just HAD to tackle NOW with all of the necessary supplies/equipment, I would cave into her just to keep the peace in our home. Anyone who doesn't have a bipolar kid may not understand how hard it is when you have a tornado in the house who can't find rest until their need for a mission fulfilled is satisfied may think I am just super-indulgent. The stress of caring for a child like this wears you down to the point that you develop unhealthy coping methods without meaning to, without even seeing it.
We talked about this pattern with Brandi, Caroline's RTC psychologist before we went off-campus, about the need for Caroline to be okay with "Sorry, I can't buy that for you now." She actually did great with that. When I told her I thought something was too expensive, or she already had enough shorts, or whatever, she was fine with it. I found myself wanting to spoil her though while we were shopping. I wanted to buy her stuff probably out of feeling bad about all she has gone through, so I still overspent my budget. But I told her that we wouldn't be able to do this at home, that things would be a lot tighter. She said she understood and that she would be okay. I am just glad this is out on the table now with her.
Well, the dishes are calling, so I will end with a quote from an amazing book I am reading by Tim Keller, The Prodigal God, examining the parable of the prodigal sons (yes, sons)
The first thing we need is God's initiating love. Notice how the father comes out to each son and expresses love to him, in order to bring him in. He does not wait for his younger son on the porch of his home, impatiently tapping his foot, murmuring, "Here comes that son of mine. After all he's done, there had better be some real groveling." There's not a hint of such an attitude. No, he runs and kisses him before his son can confess. It's not the repentance that causes the father's love, but rather the reverse. The father's lavish affection make the son's expression of remorse far easier" (pp 73-74).
Posted by Megan at 9:43 AM