It's Only August... But October is Coming

It figures that when I post good news, harder times are sure to follow. It has been a much harder week here for Mary. A little bit of background for you on the post title...

Typically the first few months of school are pretty good and then we hit October. I can only think of one October since Mary was diagnosed with Bipolar Disorder that has been stable and good (really I can only think of one October since she was a baby that was good). Usually around the middle of October, the cycling begins with depression. Now when Mary starts to cycle, it is pretty rapid. In fact her official diagnosis includes the words "mixed" meaning that her depressed thoughts and her manic thoughts co-exist and cycle so rapidly that it is hard to tell where one stops and the other begins. What we have noticed is that in the fall her cycling tends to be more toward the depressed side and the spring the cycling leans more towards manic. And really the only way we can tell that is her energy level. Her symptoms are pretty much the same for each thing, but one will usually be a little more dominant. One way we look at it is this: Mary is part of a huge pendulum that is swinging back and forth from one extreme to the other (depression to mania and back again). That pendulum also includes a freely spinning ball which turns on its own axis and spins sometimes every few minutes, sometimes every few hours, sometimes every few days, etc. That ball represents her moods within the huge arc of the pendulum. She can cycle from manic to depressed and back again in a matter of minutes sometimes, but overall the mood is moving towards one side of the pendulum. We usually have a couple of months in the "in-between" where the pendulum has swung back from one extreme and is gearing up to move towards the others. These are our more stable periods. Thankfully the use of mood stabilizing medications has made the huge arc slow way down so she has fewer days at either extreme and more days in the in-between phase. They have also helped regulate that spinning ball so that the mood shifts every day are less dramatic and more manageable.

So, what do I mean when I say October is coming? This week I have noticed more anxiety and depression creeping in. It is a little bit early for this to start, we are only at the end of the second week of school. I was really hoping for another month or six weeks of stability. Don't get me wrong, Mary is handling it well so far. We are not deep into the cycles. She is not raging or threatening suicide. But she is just very down and stressed. Every day this week she has asked me about the possibility of homeschooling her. She has NEVER wanted to be homeschooled before! She said she is getting homesick at school and she misses me. This morning when we pulled up to the school to drop her off, she started crying and just could not pull herself together enough to get out of the car. We dropped everyone else off and then she and I took a few minutes to go to Target and walk around. She was able to calm down enough to go to school with the idea that if she became too overwhelmed, she would call me and I would come get her. In the evenings this week, she has been extra cuddly and needing that reassurance. I love having her be snuggly and want time with us, but I wish it was not because she is feeling so sad.

So, what do we do?!?!? I think that she would really miss school if we pulled her out. I think she needs that social interaction and she especially needs the extra help and teaching skills from an unbiased outside source that the teachers provide. I think she would be bored after the first week and want to go back to school. And if we pull her out, I don't know what would happen to the IEP? Would we have to start back all over again to get her the accommodations that she needs? I am working 2 part time jobs that I really enjoy. I am going to school myself for the fall. If I homeschool her, when would we be able to fit that into the routine? Can we qualify for the homebound education from the school system? What would be best for her? These are all questions that are running through my head as I sit here and ponder what to do. And it isn't even October yet...

First Week of School

Last week was the first week of school for all the kids. Overall, it went very well. After Mary's meltdown at the open house, I called a meeting with all of her core teachers to make sure we were all on the same page. It went really well and I feel like everyone knows a little bit more of what they are dealing with. The only really negative incident happened on Thursday when one of her connections teachers called to tell me that she had made Mary cry in class. She explained that there were several kids in that class who are always goofing off and making everyone behind schedule, so she had really been pushing the whole class to get into class on time with all of their materials ready. On Thursday, she had "yelled" at the kids (Mary says this teacher yells a lot) once again about not being on time, and Mary just could not take it any more. She broke down and cried so hard that the teacher excused her from the room. On Friday Mary was just "off" in the morning and dragging her feet about getting ready. I asked her if she was okay and she said she just didn't want to go to that class anymore. I realized this morning why that particular incident probably upset Mary so much... she HATES being rushed. If the teacher is feeling rushed and is pushing that onto the kids, of course it will set Mary off. I am debating whether to have her pulled from that class and moved to a different connections class, but hate to do that after just one week and one uncomfortable incident. I told her to try it one more week and we will see how she feels about it. The thing is that I think this could potentially be one of her favorite classes. It is a home-ec type of class and she just loves to cook. But if she is constantly feeling rushed, she won't enjoy it at all and that just saddens me.

This morning was a little bit harder. She was sad and moving at a slow pace getting ready for school. She was even a little teary when I dropped her off. Thankfully she had one of her best friends there to encourage her. She told me when she got home that she was really depressed this morning and very tired. She seemed to be better this afternoon. I am hoping that a good night's sleep tonight will make tomorrow morning easier.

An update on the medication front... We did decide to put Mary back on the anti-anxiety medication. It became very obvious after being off of the medicine for a week that the anxiety was returning big time. She was having trouble making decisions, beginning to worry about little things, and very "on-edge" about everything. She was having separation anxiety and I could not even go to the store without her calling every few minutes asking when I was going to be home. The tears were coming much more frequently and she was also starting to feel the suicidal thinking creep back in. The final straw came when she went out on the lake with some friends of ours for the day. Later that evening, the dad (who also happens to be our family doctor) emailed me to tell me that Mary just did not seem right. He confirmed all the things that I had been seeing at home. She has been back on it now for just over 3 weeks and it has definitely eased the anxiety of starting middle school. I am really glad we caught it before it became a huge issue and that it had enough time to get back to therapeutic levels before school started.

So It Begins...

Open house was today for Mary's middle school. She has been soooo excited about starting middle school. All went really well at the school until we met the last teacher of the day. All of Mary's classes are co-taught classes which means that there is a resource teacher in the classroom with her to help her and any other kids who qualify for special education services. We have explained this probably a dozen times and she seemed fine with it. However when we met her last teacher, the resource teacher who is going to be in there with them was not in the room. She has her own classroom which she teaches in when she is not being a co-teacher and it happens to be a small "resource" room. We went to her classroom to meet her and Mary immediately began to get nervous. She realized that it was a resource room, not the regular education classrooms. One of her biggest frustrations in school this past year and her biggest fear for this coming year is that she will be pulled out from the regular classroom for testing, reading assignments, small group study times, etc. So, Mary started asking questions about what a co-teacher does, what does that mean for her during the day, and would that mean that she would be pulled out of class? Of course this teacher does not know Mary and has not been given access to her IEP yet, so she did not know that being pulled out is such an issue. She started to talk to Mary about how once a week there is a group of about 9 kids who will go with her to her room for reading time, then to computer lab and then back to her room for homework help. That was the match to the fuse! Mary got very upset and told her that she absolutely WOULD NOT go out with her, that she was in NO WAY going to be pulled from the classroom, etc. She refused to leave the room until the teacher could promise her that this would not happen, which of course the teacher could not promise. So, we left the school with Mary in tears and threatening to punch any teacher or administrator who tried to force her to be pulled out from classes and I was close to tears myself.

I am sure that this will all work out fine in the end. I realize that being in middle school we are going to have to advocate more for her and that there will be more red tape that has to be gone through. She is going from a small elementary school that serviced maybe 50 students who have an IEP to a middle school that probably services a couple of hundred students. And I know that these teachers here don't know her the way her elementary school teachers did, but they will get to know her as the year goes by. Oh but I long for her to have a smooth transition, for her to feel like a "normal" kid for once. There is a fine line between protecting her from the frustrations that I see lurking around the corners (lockers that won't open, crowded halls, difficult homework, etc., etc., etc.), and letting her experience middle school as any other kid would. I have to fight for her and let her know that we are on her team, but also step back and let the system do it's job. She wants to be treated like any other kid... as long as that doesn't involve doing something that makes her uncomfortable. And we are left walking that tightrope trying to find our balance.

Tonight I am praying for a smooth transition over the next couple of weeks. I am praying for Mary to be flexible, not rigid, for her to be willing to try new things. I am praying for her teachers and the administrators at the school to have compassionate and understanding hearts towards my child. And I am also praying for peace in the midst of what could become a storm of hurricane proportions if the transition is not smooth, that our family would be a light to those around us, and that we trust the ONE who is ultimately in control of all things.

A Change in Meds... A Change in Moods?

We have been slowly tapering off of the anti-anxiety medication that the hospital put Mary on. Our first problem was the fact that the pill in itself was very tiny. I was supposed to cut it in half and give her half a dose for 2 weeks to see how she reacted. I found it almost impossible to cut the pill in half, even with a pill cutter. One part would be 2/3 of the pill and the rest would just crush to powder. There was no way to accurately give her half a dose and with that particular medication I did not want to give her 2/3 of a pill one day, 1/3 the next, maybe half the next. I did not feel like that was a good way to taper down off consistently. And, at a little over a dollar a pill, throwing away several in my attempt to get an accurate half, it didn't take me too long to decide that this was NOT going to work. I took the pills back to the pharmacist to see if maybe they would have more success than I did. They did not even want to try to cut them, but said that there was a liquid version available if we could get a new prescription called in for it.

The liquid version was not pleasant tasting, but Mary managed to get through the two weeks at the half dose. I did start to see a few differences in her ability to cope with changes in routine, making decisions, and just overall sense of inner calm. She was still handling it well... verbalizing when things were bothering her instead of throwing things across the room... knowing when she needed to pull back from an activity and just have some quiet time. There were a few days when I thought that we were going to need to call the doctor just watching the sadness creep back into her eyes, but then she seemed to perk back up and level out again.

After the two weeks at a half dose, we tapered down even further to a half dose every other day for a week. That did not seem to bother her, so after that week, we discontinued that medication completely. The first few days were fine, but the past few days she has again been struggling with feeling stressed by little things. She said that it feels like there is a soda bottle in her head about to explode. Changes in routine bring her to tears.

At this point, I don't know if it is the medication change, or if we are starting to see the cycling come back again. I hate to even think this way, but when she was up at 6:00 AM yesterday, dressed and cooking everyone breakfast as a surprise, I caught myself wondering if I was seeing some mania creep back in??? And then I immediately started to feel guilty. She should be able to be excited, organized and helpful without me wondering, wondering, wondering. I would hate it if someone was always suspicious of my good intentions and my good moods! And yet, that is just what I do with her. Where is the balance between constantly monitoring her mood and letting her be a typical kid? I don't want her to pick up on that and blame every good or bad mood on being bipolar. I don't want her to put herself in a box. But later in the morning when an unexpected change in plans drove her quickly to anger and tears, I wonder again... this is a pretty typical manic reaction... not severely manic, but are we just building up to the major rage? So, I am left wondering, watching, and waiting. Praying my gut reaction is wrong.

The Story Behind the Song

You may have noticed that I have added a playlist to this blog. This song has been one of my favorites for a long time and in fact is the ringtone that I have set on my cell phone for whenever one of our doctors call me. A couple of weeks ago when we were driving in the car, Mary asked me to turn on the radio to the local Christian radio station. This song came on. She asked me to turn it up and after it was over she said that she really likes that song. I asked her why and she said, "it gives me hope that one day my bipolar will be under control." That just brought tears to my eyes because that is the exact reason it is one of my favorites too. Under all this mess of life and all that she deals with, my little girl is putting her trust in Jesus and finds hope that there WILL be a day where she has no more tears, no more pain, no more fears. Thank you Jesus for giving her (and me) that hope!

Summer Update

This summer is just flying by! I can't believe that we only have 3 weeks left before the kids are all back in school. It has been a good summer so far. Of course we have had a few bumps in the road, but overall things have gone smoothly.

Mary had a great week at 4-H camp! She really enjoyed being there and all the fun activities that they did. She did get a little homesick the last few days and was ready to come home when the week was over.

This past week we were able to join Mark in Fairmont, West Virginia at Dayspring Camp. It was a great week. We all worked hard and came home exhausted. But we were able to serve the teams that were ministering to people in Fairmont and the kids were also able to join the teams in town at some of the job sites. It was such a blessing to our family to participate in Mark's job in this way. On the way home we stopped at the world's longest continuous arch bridge. It made the trip home longer but we decided that we were going to enjoy the trip and not be so focused on the destination.

In between all of the travels we have been busy with swimming with sweet friends, going to the library every week for their programs, going to the free movies, and just having fun together. Mary continues to be stable, even with all of the changes in routine. Of course we have had a few rough days, but that is normal and to be expected in any child.

The First Full Week of Summer Break

As we got to the middle of last week, I realized that we had hit the "one month" mark since Mary's discharge from the hospital. I mentioned it to her and she looked at me a little strange. She asked me "Why would you celebrate something like that?". To me, looking back on the past month I am encouraged at the changes that we have seen. I am tentatively optimistic that maybe we have found the new cocktail of medications that will work well for Mary, at least for a time. I am thankful for the good days we have had together. So that is why I would celebrate.

The first full week of summer went better than I expected. I knew there would be some anxiety with the change of routine, the boredom, the dentist appointments and doctor appointments scheduled for the first part of the week. But, overall Mary handled it fairly well. There were some tense moments, especially when Noah pushes all the right buttons. But there were no major (or even minor) breakdowns. Praise the LORD!!!!!

Mary is very excited about going away to her first sleep-over camp. She has been asking to go to camp for years and it was never the right timing or the right cost. This year she found out about 4H camp through the school 4H program. She did all of her homework and wrote us a nice long letter about how much she wanted to go to camp. She included all the answers to questions she knew we would ask (what about medications, bugs, friends, handling the change in routine, frustrations, meltdowns, etc.). After several weeks of agonizing over the decision, and a couple of calls to the 4H coordinator to discuss Mary's unique situation and our fears, we did decide to let her go. The one thing we have told her all along though is that she has to be stable enough to handle it before she leaves or all deals are off and she is not going. We have also told her that she has to be able to hold it together when she gets home too, or this will be her first and last time going to camp for a long while. So far she is holding up her end of the bargain. And I realize that she can't totally control how she is when she comes back, there will be frustrations and meltdowns beyond her control, but if it continues as it has been, I think she will do fine.

As far as medications go, the new one that we started 3 weeks ago seems to be helping her a lot. So far we have not seen too many negative side effects. She has gained a few pounds, but her appetite is not voracious as it has been on other medications. I am hopeful that with plenty of exercise and activity this summer that gaining those few pounds will not become an issue. After she comes home from camp, we will start tapering off of some of the other medicines and see how she does. This will open the door for us to add in something else should the weight gain become more of a problem. The last thing we want to do is have her overmedicated or on some medicines that she really doesn't need. At the same time we don't want to switch things too much since what she is taking is working and helping ease the transitions. We don't want that anxiety to creep back in, especially right before starting middle school for the first time. It will be a balancing act as it always is.

Another big change this summer will be that fact that Mark is going to be out of town most of the summer. I am not stupid enough to post the dates he will be gone, and I even debated putting this out there for the world to see, but I covet your prayers during this time, both for us here at home, and for Mark as well. It will be challenging for all of us. I am so thankful that he is at least in the country so we will have daily contact with him. He is only a phone call or email away and if anything goes bump, he can be home in a matter of hours. I am so thankful for our church family here that are super supportive and always willing to lend a helping hand. It gives me a new appreciation for those who have loved ones serving in the military who are away for months or even years at a time. I know God will carry us through this time and He will use this in our lives to draw us closer to Him, and that is the ultimate goal of every situation He puts us in.