Oh But She Seems So Normal

When I hear the above statement, sometimes it angers me but other times it makes me happy because it means that Princess is so stable that others don't see anything wrong. Sometimes I want to shout and scream about all of the unspeakable things my family has had to endure. Society wants a cure for cancer. I want a cure for mental illness.
Lest anyone think that I am exaggerating about my daughter's problems, I'm going to give you a glimpse into a day into our life.
July 21, 2013 did not start out like any other day. It was like many other days that summer. From almost the minute Princess woke up, she was ornery and uncooperative. Her birthday party had been the day before. She was still upset that only one person came to her party. Early on my husband and I decided to stay home from church because we sensed that things would go south rather quickly.
Around 11:00 I had to call the county's crisis line to ask someone to come out to evaluate Princess as she was becoming hostile, angry and aggressive. Shortly before this she had been chasing after me and attacking me with her stick pony. Anyone who says to just pull it out of her hands has no idea how strong a child fueled with anger and  adrenaline can get. I once had a police officer tell me that we just needed to spank Princess and she'd be fine.
Anyway back to the story. The crisis counselor told me that she'd have someone call us back. They knew us well because we were having a lot of problems with Princess. They had just closed the file on our case because they couldn't fix it in three weeks. One of their specialists had made the statment that our house was chaotic and that we let Princess "rule the roost." Again merely a parenting issue.
Sorry I keep getting side tracked but this is important history to  understand what happened next.
The head psychiatrist who oversaw our whole county's mental health crisis line called me back to say that they would not be coming out to our house that day. I said, " What if I get a black eye or a broken arm?" He replied that they still would not come out.
 Unfortunately some medicine that I had given Princess to calm her down was very short acting so it wore off after only a couple of hours.
During this time I had been texting some friends and family asking for prayer. They were people who I knew we could count on. One of them asked if she and her husband could come over to see us to give us a breather and offer support. After some discussion, my husband and I decided to agree to letting them come over. 
About 30 minutes later Clarice and Richard came over. Clarice had brought a  birthday present for Princess. Princess and I  oohed and ahhed over it while the guys were outside taking a breather on our back patio. Princess became agitated because she wanted to show Clarice the new doll she had just gotten for her birthday but Clarice and I were talking so she had to wait. For the first time ever, she attacked someone other than my husband or I. Clarice was left with scratches on her arms.  Princess got distracted by the swing outside and asked to go play on it. I agreed and all three of us went outside. Princess was only on the swing a few minutes before she left our property and started running barefoot down the street. I was certain she was headed for her friends house a few blocks away. I tried calling the child's mother while Clarice went looking for our husbands.
Before I knew it the friend's mother was calling me as I was calling her. She called me very concerned because Princess was hiding under a bed  and had made some alarming statements.
My husband got in our car hoping to get her and put her in it because he knew she would not willingly walk back with him.  After Princess refused to get in our car,  I had no other choice but to call the police even if I didn't think they could help us.
Twenty minutes later the police had still not arrived and by this time Princess had run off again. We really were not sure where she went.
I called the police again and was told that they were busy with other calls. Finally they arrived after my second call. By this time Princess was now back on our street but was in different neighbor's house hiding under the bed in the master bedroom.
Our neighbor, Jim and his wife, Betty came outside to talk to us. About the time the police finally arrived, Princess was on the move again. She moved into the neighbor's tent trailer so that is where the police officer talked with her. When he came over to the front yard where we were all gathered, he said that Princess recognized there was a problem and agreed to go to the ER.
Princess wanted to ride with Clarice and I so the guys took our car and followed us. By this time we were starving and Princess had fallen asleep in the back seat so we grabbed some fast food and proceeded to the ER. Once we got to the ER, Princess was an angel. This is how many ER's see kids like mine. Then they are assessed and sent home again. What the doctors don't realize is that children are rapid cyclers so it would just be a matter of time before she would rage again.
After triage, we were sent to a holding room in the ER and sent our dear friends on their way. Previously when Princess had been in the ER it was party time with TV and ice cream. What kid wouldn't want to show their best side in that situation? This time I told Princess there would be no TV. This set her off. Before I knew it lots of ER staff were in the room trying to subdue my child. It was not a pretty sight. Well after that the staff were pretty much on our side. They told us that since they had witnessed a full bown rage for themselves that they would advocate for us with the crisis team assessor who would make the call whether or not to admit her to a behavioral hospital. I was still not convinced since we had been at the ER  four times in the last month and had been sent home all four times. This time when the evaluator came, she read the reports,  and saw my daughter had been subdued, she decided not to interview my daughter as had been their previous practice. She felt there was enough evidence to admit her. Now the difficult task was finding a bed for her. If they were unable to find her a bed, she'd have to stay in the ER for up to three days until one was found.  Even though we live in surburbia, there are only 13 beds available for kids my daughter's age. After many phone calls and hours later, we were told that a bed had been found almost an hour away in another county. By the time we got my daughter checked in it was 6 a.m. the next day. My husband and I were exhausted.
I wish I could tell you that after that hospital stay, they found the right medications to bring her to stability. What happened instead was that, she had three more hospital stays over the next two months. She would be in a hospital for a week to ten days, come home for a few days, become unsafe again and have to be admitted again. Thankfully, my daughter's psychiatrist is forward thinking and wanted  Princess to try the new wonder drug but this wasn't until October.
In mid October we began to see a beautiful child emerge. We knew she was there all along but the fog of mental illness was clouding her.
This summer Princess has had two major successful events. She had an awesome birthday party and a fantastic time at VBS (Think Sunday School Summer Camp for a week.) She's also doing pretty normal things like going to the beach and a baseball game.
We may not be going on any fabulous vacation any time soon but I'll take what we have over the trips to  behavioral hospitals anytime.
I know all to well that Princess' current medicine regimen could stop working at any given moment. I am also aware the teen years are coming. They bring additional challenges to kids with mental illness because their hormones get out of sorts which in turn affects the balance in brain chemistry. For today I choose to not look to far into the future. For today I choose to focus on all of the blessings that stability brings into our lives.
The next time someone says that my child is typical, I just may thank them for that compliment but in my heart, I know how hard all of us have worked to get Princess to that point.
*Please note: All of the names mentioned here are fictitious but the people and events are not.

VBS Fail!!

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     If you have been following this blog for any amount of time, you know that my daughter has had trouble at both home and school with aggression. Her school says that she doesn’t need a highly trained 1:1 aide. After today, I have more ammo that Princess needs a 1:1 aide or a therapeutic day school.

My friend recommended the VBS at a local church (not the church that we attend). She told me that if I told them about my daughter and requested a 1:1, then they would provide her one. Well I did this three weeks in advance of VBS. The director sent me an email saying that they might not be able to provide Princess with a 1:1. She said that myself or another family member might have to come be that 1:1 aide for the week. I am not too keen on this idea.Princess has never done well when I am a helper in one of her classrooms. I also think that can be hard for a child to have to have their parent there.

      Yesterday Princess did OK for the first day. She said she didn’t want to go anymore but we talked and processed on how to make things better. This morning she got up, got dressed and was ready on time. When I got to the church, she freaked out a little because the music was too loud. Then one of the counselors came over and gave her some headphones and her picture schedule of the day’s events. I was thrilled. It looked like the church got it. Wrong!

     A few hours later when I went to pick her up, I noticed that the counselor called someone on her walkie talkie.  I thought maybe it was just a coincidence that it was at the same time as I walked up. Wishful thinking! It was about Princess. The counselor told me that director wanted to talk to me. When I went over to where she was, she told me that Princess had been aggressive. I was officially told that they did not have the manpower to handle her and keep the other kids safe. I was told that Princess could not come back unless she had a family member come. Not gonna happen. I will just figure out something here at our house.

     What frustrates me most is that I expect this from sports leagues, dance teams, Girl Scouts, theater groups etc. but not from the church. The church IMO should be a place of acceptance for all. Heck even movie theaters are having special viewings for Autistic kids. I know that this church did some things to help but obviously not enough. I was told that her special buddy for the week was a teenager.

     The director told me that Princess was only listening to adults. She did not have an extra adult to help out with C. She also told me that she didn't want Princess to miss out on this opportunity but that myself or a family member would have to provide the extra support my daughter needs. She does not see that Princess will get teased if her mommy is there to help. I can work to get her more supports at home, school and at our church but I guess not everywhere. I am still so saddened by this. I wish I could just tell other moms and adults what it is like to have a kid like mine. And so I blog about this experience to educate others on what it is like to raise a high needs child.

One day Mental Illness will be more understood. One day....

BTW- This experience makes me even more grateful that our church has a really good disabilities ministry.

BTW2- I did ask the director to write a letter to whom it may concern telling what supports were in place and even with these supports Princess needed a more qualified aide to help her navigate VBS successfully. Hopefully I can show this letter to the school district in the Fall.

BTW3- My dh said “ Hey that’s kind of what the school said about Princess needing you to go on the field trip with her.”

This is a picture of Princess all ready to go to VBS this morning. (minus the flip flops)