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)

Calming Sunday Morning Mayhem

One of the difficulties in parenting a high needs child is getting to church on a consistent basis. Princess used to have meltdowns on Sunday mornings or just would have a difficult time overall. I found out this year that her 2nd grade Sunday School teacher just let her crawl around under the table most of the hour. He let her do that rather than having to deal with a non compliant child. After Princess had a major meltdown at church in October, her teacher gave my  phone number to our Disabilities Ministry Director. This wonderful lady worked with me to come up with a plan for Sunday mornings.

We met with another young lady to talk about Princess and to brainstorm creative ways to make Sunday School a more successful place for Princess and her classmates. In the end we decided it was best to have a 1:1 aide (We call her a shadow.) The plan is pretty comprehensive. I will say it's  like having an IEP only better because they gave me everything I asked for and more. We came up with a chart with target behaviors so that Princess could earn stickers for making good choices.  We figured out where she could go to calm down if the morning was just too stimulating for her.  It was decided that I would pack a snack and some water Sunday mornings since Princess can get really hungry or really thirsty. The aide will take my daughter on breaks if she needs them. She even brings gum as an incentive for Princess to earn at the end of the hour if she needs it.

The aide could not attend our meeting so she and I talked at length over the phone before the first Sunday morning launch of our new plan. She was fully on board and wanted to do whatever it took to help Princess navigate the waters of Sunday mornings. I was asked to call her or the young lady in charge of placing the aides in the rooms if we were not going to make it on a given Sunday. I was told I could even call right up to the minute before class was to start. The aide has told me that it was no big deal if we didn't know until the last minute because she would just find another place to serve for that given morning.

I will say that the plan has had a few kinks to work out. Satan did not want us to succeed. (I personally think he is afraid of Princess. He's afraid because he knows that this is a child with a super big heart who loves God so very much.) Once we got the kinks worked out, the ship has sailed very smoothly.

Over time going to church on Sunday mornings has become the norm not the exception. I don't think we have missed a Sunday in about four months.  It's funny because Princess wasn't supposed to know about her aide. We were kind of doing it on the sly but she is so smart that she quickly figured it out. She's a quirky kid because she has this intense love/ hate relationship with her aide. There are many times when she wants nothing to do with the aide. She will even growl at her. Then there are other times when Princess wants to give her aide a hug.

The aide for her part just rolls with it. It is so nice because she really tries to tell me at least one positive thing that Princess did that morning. This past week she did two things that I thought were pretty amazing. She was the only one out of about 40 kids who knew the previous week's bible story. She was asked to come to the front of the class and tell it. According to the aide she even knew the little details. Pretty impressive for a child who appears not to be paying attention most of the time. She also volunteered to say a prayer near the end of the lesson before the students went back into their small groups. This just makes my heart sing.

Since Princess is going to Sunday School on a regular basis we are seeing other fruits as well. She donated a whole roll of quarters for their current missions project. This is money that she either earned or got from the Tooth Fairy. She is eager to learn bible verses. I will say candy is a great motivator for the verses. She has made another friend who has an aide like her. These are great accomplishments for her. My husband and I are so proud of her.

My proudest moment came this past Sunday on the way to church. The radio announcer was hawking a dating site. He said that choosing who you will marry is one of the most important decisions you will ever make. I turned off the radio and asked " What is the most important decision you will ever make?" My daughter replied "Following God." I almost cried tears of joy right there. She gets it. Between church and home, my daughter is making the connection that God is number one in her life.

One very cool way that I could see God's hand in all of this is who He chose to be Princess's aide. My husband was her son's basketball coach over 10 years ago. She feels like helping Princess is a way to pay it forward. Her weekday job is as an OT working with kiddos like my daughter so nothing that Princess does phases her. I feel so blessed.

My church is just another part of our village that is helping my husband and I to raise Princess.

Here's a link to my church, EV Free Fullerton. Here's more information about Disabilities Ministry at EV Free.

Getting Help From the School Part 2

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I previously detailed the start of our journey in getting help from the school on this post.Today's post is continues where I left off on this topic.

Typically Princess has a really difficult time adjusting to going back to school. Most kids want to relish the carefree days of summer just a little bit longer but for a child with a mood disorder this is magnified 100x.  The start of Princess’s 3rd grade year was no different. Even though she knew who her teacher was going to be and she knew most of the kids in her class, transitioning back to school was extremely difficult. One thing that added to this was that Princess wanted to wear her flip flops to school. She doesn’t like wearing closed in shoes. We of course had purchased shoes with her and made her wear them out of the shoe store but this did not change the fact that she did not want to wear them to school.  So when school started one of Princess’s delay tactics was to refuse to put on her shoes in the morning. One time my husband sat outside of the school for two hours trying to get Princess to put on her shoes.

 At Princess’s SIT meeting a the beginning of school I requested an aide to help Princess transition from the car to school in the mornings.  I even asked that she be able to wear her flip flops to school. We were told that the school “cannot mitigate” Princess's attending school. They declared they simply did not have the manpower to assist us in the mornings. This daily struggle continued until mid October.

Finally in mid October an event occurred that rocked our world but in the end it helped Princess get more assistance from the school. I’ll share more about this in a future post.

Fast forward to November. Princess’s annual IEP was scheduled. We had been told over and over again that Princess was fine and that we were overreacting. They had repeatedly told us that Princess didn’t really have any problems. With the help of our advocate I requested more testing for Princess. We felt she needed a Behavior Support Plan and a 1:1 aide.  Well lo and behold at this November's IEP meeting, where everyone and their brother was in attendance, we were told that Princess was having significant problems at school. They wanted to place her at another school with a smaller class size to work on Princess’s behaviors. At first I was in shock but I did have some sort of inkling that this was the direction that the school was heading. After a visit to the new school, my husband and I decided to go ahead and place Princess there.

At this school Princess is one of 13 students in her class.  In addition to the teacher, there are two aides in the classroom at all times. The students work in small groups in 15 minute intervals with 5 minute breaks in between.
Princess has several other supports in place, in addition to this smaller class. Princess has an OT (Occupational Therapist) who visits once a week to work on Princess's handwriting. Her teacher and I meet once a month to coordinate home and school discipline. Princess also receives counseling twice a month at school. We are obviously making progress getting Princess the help that she needs at school.

We still don’t have the 1:1 aide for Princess but I haven’t given up that fight yet. Like most moms I have the mentality of “I am woman, hear me roar.” 

One thing worth mentioning is that at one of Princess's IEP's at the new school, we were told that there would be a behaviorist waiting to assist us in getting Princess from the car to the school office twice a week. So I guess the school can " mitigate" for us when they want to. 

Below is a picture of Princess on her first day of school a few years back.