RealMental

It’s that time of year again- time to get ready for a new school year. Princess is still in the special school, with small classes and lots of counseling support. Also lots of troubled kids, but in a way I feel as though being surrounded by everyone else’s issues may force her to cope with her own. She made a good friend last year, another girl who loves Harry Potter and Invader Zim and writing role plays on Gaia. Oh, and who is also fighting some mood disorders. There is something very comforting about arrangement a sleepover when you know the other parent totally understands the medication drill and all that. We are in the midst of changing the mood stabilizers, but so far we have not had any problem with the transition. I remain cautiously optimistic, and continue to take things slowly. There is something to be said for keeping her in the special school for the remainder of the year, and waiting until she starts ninth grade to transition back into the comprehensive school.

Hoss is working really hard at being in control, even dropping his afternoon ADHD dose on days when he is just hanging out. His meds have been steady for some time, his appointments are now spaced out more than before, and we are not dreading the return to school. The administration stacked the cards in our favor this year- the fifth grade had a vacancy, so Hoss’ fourth grade teacher rose to fill it. And, in a totally unexpected move (and by “unexpected” I mean “totally expected,” a la Professor Doofenschmirtz), Hoss was assigned to Mr. G’s class again this year. Hmmm, a teacher who my boy totally connects with and loves more than anything, and a special educator who gets his humor. What more can a mom ask for?

This, I think, is the year of Little Joe.  The quirks and routines are starting to become more noticable.   I forsee testing, and am going on record with a prediction of PDD/mild Aspergers with a touch of OCD. I hope that any issues can be dealt with by behavioral measures, since the possibility of Little Joe swallowing even the tiniest of pills or anything liquid that is not milk is…let’s just say it would be a challenge.

My goal for the school year? No hospital stays. It’s not so much to ask.

Six weeks ago, we were back at the start of another loop. Since then, we’ve gotten a new diagnosis (Pervasive Developmental Disorder- Not Otherwise Specified), changed schools (withdrew from the private school to enroll in our home middle school), another hospitalization (shorter duration this time) and acceptance into the county’s transitional program. The Bridges program is for students with special education/emotional disturbance needs and serves the goal of fully identifying the educational protocols and services needed to get students back into the least restrictive environment (hopefully their home school, but sometimes a regional school that is one of the comprehensive schools with some additional resources available- there aren’t enough resources for every school to have them, but it’s more inclusive/less restrictive than a specialized school).  We are continuing to use the intensive outpatient program that we’ve used off and on since July, even though I am starting to question its effectiveness, since there isn’t another program of its kind anywhere else in the state.

She wants to be in school. She really wants to be in the comprehensive school that is in our neighborhood. Kids with PDD tend to have some of the same behaviors and social difficulties that kids with Aspberger’s Symdrome have. The subtle difference lies in the fact that AS kids don’t seem to understand why the lack of social interaction is a problem, while PDD kids want more than anything to have friends and be like every other kid their age.

For years, I thought I wanted my daughter to be special. Now that she aches so hard to be typical, I find myself wishing she could put some of that specialness aside until she’s old enough to appreciate how wonderful being atypical might be.

We left home for the ER around 7:45 Tuesday evening. I packed a bag for Princess- a few changes of clothes (no drawstrings, hoods, scarves, belts or jewelry), a few books, some toiletries (not her hair pick, no bar soap). I brought my knitting and a magazine to read.

By now I know the answers the nurses and doctors need to hear. I rattled off the history of the previous visits and hospitalizations. I identified her current and previous medications, by name and dosage and treatment schedule. The terminology is almost second nature now- she is not in active crisis, but is unable to ensure that she is fully capable of maintaining her own safety at home. The bipolar tendencies were first diagnosed in September, and her brother’s mood disorder (the ever popular “NOS,” which in layman’s terms means “your kid’s brand of crazy doesn’t fit the current DSM definition”) was diagnosed about 20 months ago. There is no diagnosed history from parents or previous generations. Note that I don’t say there is no mental illness in the parents or previous generations; I firmly believe that there has to be something on both sides that we just don’t have on paper. I can’t accept that I ended up with two children with such significant mood disorders just by the luck of the draw.

The transport to the psychiatric hospital came at 7:30 on Wednesday. We were ready to leave. 24 hours of hospital food and sleeping on a the chair that pulls out to a cot took its toll. I survived the the 35 minute drive, as I followed the ambulance, without significant incident. The blowout I got during that same drive in September remained in the back of my mind.

We got her checked in without a snag. A couple of the nurses recognized her name when the paperwork was handed to them. They checked her bag, noting that everything was acceptable (I learn from experience). She hugged me goodbye and asked if I was coming to visit every day. I promised that we would try to visit, and would call if we could not be there in person. No one cried.

I feel numb and empty. The experts tell me what to do, I do those things, and yet we are not being able to help her. I have come to believe that she needs a specialized school situation, one which provided the cognitive behavioral therapy that she needs to combat the irrational thoughts before they become emotional actions. The medication is not enough. But the specialized school will require many, many hoops to be jumped through. I am in the process of the educational evaluation that has the potential to put her in this type of school without me needing to go bankrupt. But I am scared to admit to my husband or my parents or my friends or the current school that the special school is what I really want for Princess. They fear a stigma, or an inability to re-assimilate to the life we’d planned for her (e.g., attendance at the private school at which her dad is the band director). I fear that the adjustment to a new group of students and a new school will be more anxiety-provoking than returning to her current situation, although she reverts to the harmful behaviors when she is back at school for more than a few weeks.

The more I research and the more I learn, the less I really know about any of this.

(Cross posted on Band Back Together)

I am tired of holding on, and worried about how much longer I can keep doing what I am doing. Princess is still out of school, but in a holding pattern. The doctors do not feel as though she can return to school, and I agree. We do not know what the problem is, whether the overwhelming anxiety is school in general or that school in particular. So she is home, or at her grandparents, each day while we figure out what comes next.

The treatment coordinator at our practice began the process of looking for an partial hospitalization program after Princess’ appointment last Tuesday. On Thursday they told us that there was no space currently, but that a space might open this week. Yesterday I got a call that a space had opened up but that I needed to bring her in before her scheduled group therapy session (we’ve reverted to the 5:00-7:00 program every night until we can get her into a hospital program) because the hospital requires a referral evalation that is no more than 24 hours old,and the paperwork needed to be in hand by 4:00. So, the assessment from Friday’s session was no longer valid and last night’s assessment would have been too late to be processed. I left work at 1:00 so I could pick Princess and make one of the open spots. I called the hospital around 4:15 to verify what time I was supposed to bring Princess this morning, only to be told that they  had no idea what I was talking about and that no spaces were available. When I arrived at her group therapy appointment, our treatment coordinator told me that she submitted the paperwork as agreed only to be informed that the space promised a few hours earlier was no longer there. Best case scenario is an opening on Thursday or Friday, but it’s more likely to be some time next week. And so we wait some more, trying not to be overwhelmed by the concern that each day out of a therapeutic and educational routine means more difficulty adjusting back into the routine that one would expect for a 12 year old girl.

I was home with Princess on Wednesday, and she while trying to reason her out of her room in order to get her to tell me what was wrong (and so I could watch her carefully), the phone rang from the boys’ school. The principal informed me that Hoss had run away from the property and that the police had to be called. She expressed her intention of keeping Hoss in the school building under the care of his gang (principal, VP, counselor, school psychologist, special ed team members, whoever) until something close to normal pick up time. She wanted to let me focus on Princess without needing to also watch Hoss. A few minutes later, the school called again, saying that the police were requiring me to come. In the time it took me to dry my tears, get my shoes on, close up the house and get myself and my daughter into the car, the police officer called to exhort me to get to the school. I arrived and was judged harshly by an officer who was aghast that I was initially not going to come pick Hoss up, who said he was taking Hoss to the emergency room because he had expressed a desire to end his life. Despite the professional opinions of the psychologist, counselor and school principal who administered the suicide threat assessment (a group who understand that his “I hate my life. I wish someone would just kill me” is not actually a true suicidal ideation), the officer took my son to the hospital in a patrol car. I was not allowed to leave until the mobile crisis team dispatched by the county arrived to speak to me. After some begging on my part, the officer allowed the counselor to go to the ER until my husband could get there.  The social worker and psychiatrist at the ER released my son within a few hours, noting that he was not a threat to himself or to others.

I am playing phone tag with my prospective new doctor, in hopes of getting an appointment so I can tell her about the mounting crises that make up my daily life and so I can try to get some relief. I called her on Thursday, but missed her return call at lunchtime on Friday. I called Friday night and left my work number as well as my cell and home, and have not heard back, so I am calling again. The mobile crisis team last Wednesday (a pair of neo-hippies who meant well but had nothing to offer me that I didn’t already have in place) listened to my account of the things that are happening and the things I am going to try to mitigate the turmoil, and they told me that I am doing all the right things. But doing all the right things does not seem to be making anything get better. I shudder to think of what our lives would be right now if I were doing the wrong things.

The energy it takes to get through my day is increasing. The reserves I have are decreasing. Something has got to give very soon.

It is not a good thing to get a call from the boys’ school alerting me to an elopement incident, the first in well over a year.

It is not a good thing when a police officer calls to ask how quickly I can be at the school to address the expressions of self-harm that Hoss verbalized when being brought back.

It is not a good thing when the social worker at the pediatric ER recognizes our family on sight.

It is not a good thing when the mobile crisis team is called in.

There are good things. It was a good thing when the staff took Princess (who had to come with me, since she is not safe to be left alone) to a conference room and fed her lunch while I spoke with the principal and the police.

It was a good thing when the counselor agreed to accompany my son when the officer insisted upon taking him to the ER.

It was a good thing when the school psychologist and the principal spoke of my dedication to my children’s safety and mental health, in an effort to make the officer understand that Hoss was not actually a danger to himself.

It is a good thing when I alerted the school that Hoss had been released to come home, and their response to asking if he was allowed back tomorrow was, “Yes! We want him here and expect to see him first thing in the morning.”

It is a good thing that I had already scheduled a family therapy session for 6:00 this evening.

I desperately need more good things.

Princess is back in the ER right now. She ran away from the school building today, shades of her brother from a few years ago. The counselor saw her leave, followed her out, and managed to stop her at the curb, just before she decided to run into traffic. She says she wanted to just run and run and let herself get hit.

Today was not one of her days in group therapy, now that she has dropped down to three days per week. Last night she told the doctor she was mostly feeling better, fewer thoughts of hurting herself and more ability to keep the thoughts in perspective and talk herself down when the thoughts do come. Tonight the doctor insisted that she be evaluated by the ER doctors before being allowed to come to group tomorrow.

She says she feels safe calm and comfortable when she is in the hospital, but she does not want to be away from home and back in an inpatient program. She says she feels calm and comfortable when she is in group. She says she feels calm and comfortable when she speaks with her LCSW on weekends. She says she feels calm and comfortable at home. At school, she usually feels calm and comfortable at the beforecare program, and the aftercare program, and first period religion class, and second period math class and third period social studies and at lunch.  During these times she can handle feeling sad or anxious or confused when those feelings come.

She does not feel this at recess. Her friends with whom she eats lunch like to play ball, which she does not.  She feels that she does not have a place or an activity or a presence that feels calm and comfortable.  She cannot or will not articulate whether her afternoon classes make her feel tense and uncomfortable.

Inpatient programs and intensive group therapy and one-to-one counseling sessions are not helping her navigate her life as it stands right now. I want her to be safe, but I do not know what tools she needs to make this happen. I’ve spent too many hours or days or weeks being the one to figure out the next move and letting everyone else know what needs done, but those solutions are not working and I no longer have the tools to figure out the next move.

When we have weathered this crisis, I am going to speak to my own doctor. I am going to request that he write me a prescription for an SSRI, but not the one I used previously because it made me tired and nauseated and I think that there are others that can help me. I am the mother of two (or maybe three) special needs children, and the wife of a man who forgets that he is not the only person with a stressful job, and the person at our office who takes care of the administrative side of the governance functions as well as taking care of the people who needs to be coddled. I can no longer be all those things without some help.

Princess was released today. Her medication has been adjusted, thanks to a doctor who was willing to listen to my speculation about bipolar tendencies. We meet tomorrow with the practice that will take care of the transitional care when she returns to school next week (either a partial hospitalization program or an intensive outpatient, both of which will take place after school).

Tonight was back to school night at Princess’s school. It was not an easy night, since I didn’t know what to expect from other parents or from the teachers regarding Princess. Many of the parents seem not to know that anything has gone wrong. The only parents with whom I talked about her recent hospitalization were the parents of one of the girls who reported to the counselor that she was talking of stabbing herself. I thanked them, and their daughter, for starting the process to getting better. I tried to hold back the tears, but…well, that isn’t so much an option for me sometimes. I apologized for putting their twelve-year-old daughter in such a tough spot.

My tears brought some tears from this girl’s mom. She and her husband admonished me for apologizing, and said they are keeping Princess in their prayers. They wanted to pass along to their daughter our appreciation for having done the right thing. She told me that her sister had struggled with depression and talked of suicide, and that her husband lost a friend to suicide.

I still feel like a shell of myself. I’m sleeping more than typical yet not feeling rested. I eat because I know I must, not because I have a taste for it. Our priest, the school staff, Princess’s therapist, the executive assistant for my department are keeping a close eye on me, I think, not sure if I may shatter at any moment. But for Princess I am holding it together, I take deep breaths and I focus on how to move forward. One small step at a time.