Bloggy Moms

Tuesday, July 28, 2015

Why I Blog About My Daughter's Mental Illness

A few days ago I read this article about oversharing. The author shares her view points about how oversharing can have a negative impact on children as they reach adulthood. It has taken me a few days to process her statements.  Maybe I am guilty of oversharing. One day my daughter may read what I have written about her and be mortified. I hope she knows that my intentions were never to embarrass her or bring her shame. I hope that she knows that I am not nor will I ever be an egomaniac. I hope that she can appreciate my motives.
 Initially I started blogging in 2010 as a way to share some of the funny quirky things my daughter did. I named my blog "Raising a Drama Queen", because that was an adequate description of how I felt. During my daughter's turbulent years this fit her perfectly. Now that she has been stable for almost two years, it doesn't fit as much but it is still a fun moniker. One that she can laugh at as well.
Blogging was and is a way for me to tell our story. There are not a lot of blogs out there about children with bipolar disorder.  The media have never portrayed Bipolar disorder portrayed in a good light. I want to change that. I want to educate others about our struggles with getting my daughter the care that she needs.
I was in an online support group for many years before I felt that I could give back. Over time I found myself able to encourage others. I thought that my starting a blog and eventually a Facebook page that I could encourage even more people. This past April my daughter and I had the opportunity to take our story to Capitol Hill. We both shared about her challenges and triumphs.
I have told her on many occasions that she can be an inspiration to others. Her story can give others hope that they are not alone.
In the past year I have become bolder about sharing more of the details of what my daughter has overcome. Some may criticize and say that I tell too much. This is the very reason why I keep my daughter's identity private. It is a shame though, that mental illness still has so much stigma surrounding it that people like me have to be afraid that our children will be teased for something that they have no control over.
There will come a day where my daughter will read what I have written about her. She may hate me. I pray that she knows what my intentions were. I hope that she knows that what I have shared could quite possibly have led to a change in laws or a change in policy. I hope that she knows how deeply I love her and want the best for her and other children like her. I hope that we have been and will continue to be part of the solution to ending the shame of having a mental illness.

Monday, July 20, 2015

Mary Poppins and My Special Needs Daughter

As I sat in the darkened theater enjoying a performance of "Mary Poppins", a familiar figure summoned me to come with her. At first I thought my daughter had been injured coming down off the stage or even back stage. That wasn't the case. As I was ushered back to the cast dressing room,  I was informed that there'd been an altercation between my child and several other performers. Thankfully no one was really harmed, but my child was crying and upset.
This incident came as no surprise to be since moments before I'd noticed that when my daughter was singing onstage, she did not seem her usual chipper self. Something was off. I was later told that another child took Princess's seat after she had returned from one of her on stage numbers. Cast members had been informed that all chairs were open. No seats were assigned or given. Upon finding out that her seat had been taken, she asked for the child to move. When they didn't, she took matters into her own hands and began to hit them.
To get to this moment in time, I need to rewind to the beginning- to the auditions. No even farther back- to five years ago. Yes five years ago my daughter performed on this same stage in another production. Our neighbors shared with us that a local neighboring church was putting on a play for children ages 6-12. The best part is that all children would be able to perform in it free of charge. Everyone who auditioned was guaranteed a role. Many, my daughter included, were cast in the ensemble. It sounded like a win-win situation. It was for the most part except that this was the same summer that we found out that Princess, my daughter, was diagnosed with possible Bipolar Disorder. Somehow she muddled through the performances in spite of her challenges.

In the years since that summer, my husband and I never felt that Princess was ready to perform onstage again. She had many turbulent summers. Since that time Princess has done a lot of growing and maturing. She's the most stable that she has ever been. This April after discussing it with my husband and my daughter, we decided to sign her up for the church's rendition of the classic, "Mary Poppins". It turned out to be a blessing and a disaster.
 Our home church has a wonderful disabilities ministry which provides my daughter with a fabulous 1:1 aide during activities at OUR church. The little church putting on "Mary Poppins" does not have this type of ministry. I did ask if Princess could be assigned a buddy. I sent several emails to the church liaisons explaining my daughters unique needs. I was assured that everything would be OK.  I checked in weekly to make sure things we progressing. I was that parent. Week after week I was told that things were alright. My daughter was learning her parts and getting along with the other students.

The picture that my daughter painted for me was very different from what I was being shown. I never know if my daughter is exaggerating when she tells me "Kids are being mean to me." Or "No one listens to me." I was even informed that director had a back ground in special ed so I should not be concerned.
I almost feel as if I was the one to blame. This program had over 200 children in it.  The cast that my daughter was part of the ensemble for was comprised of around 80 children. Most of them do not have any special needs. The church made no claims in any of their flyers or announcements. Is it this church's responsibility to provide extra support? Was I pushing too hard? I'm not sure where I went wrong. I asked my daughter weekly if she still wanted to be in the play. Even last night through a tear stained face, she assured me she still wanted to perform. At one point she even begged me to let her stay. My child was willing to give up going out to dinner with our extended family if I would just let her stay and perform. So I gave in. I stayed backstage in the dressing room where I could give my daughter the 1:1 support that she needed.
She got a lot of stares from other performers wondering why her mother was with her. Why was this strange lady coloring beside that mean girl? The one who moments before had tried to harm them. I did tell a curious child that I was coloring because it was a fun thing to do with my daughter. What I didn't tell this child was that I know that coloring can be a very calming activity. My child needed calm in the midst of that chaotic room so I created it.

The calm that I created, allowed my child to finish out the rest of her performance. She was even able to have a successful dinner out afterwards. The blessing of being in this play was that my daughter proved that she could  live out the actors' mantra "The show must go on."  The curse was that she still needed the 1:1 support that she receives elsewhere, but did not get it during this activity.
I'm not sure what I'll do next summer since more than likely my child will want to perform with this group again. For today I'll try to focus on the positives not dwell on the negatives. Just like Mary Poppins.

Thursday, July 16, 2015

Free In Home Crisis Intervention? No Thank you

 Today I talk a lot about the little things on my Facebook page. I recently posted about Princess liking Michael Jackson and my husband entering vegetables in the county fair. Some may wonder why I post about the mundane. Frankly I'm happy that most of my life right now is pretty calm.
Two years ago was a very dark time for my family. Princess was the most unstable she'd ever been in her life. Like many families whose children are on MediCal (our state funded insurance), we did not want to put Princess on this insurance. Unfortunately we had to. Shortly after Princess was approved for MediCal, we had to take her to the emergency room at a local hospital due to her aggressive behavior. Even though the staff psychiatrist agreed that she needed hospitalization, MediCal had their own standards that had to be met. We waited for hours until a crisis team member from county mental health could arrive to assess my child. During that time Princess had calmed down considerably. The evaluator told us that she did not "meet the criteria" for hospitalization. We were told that instead the county would provide in home support services for our family.
At  first this sounded wonderful. We were already seeing a private counselor weekly for parenting solutions. Additionally, Princess was seeing this same therapist for weekly sessions. She also was seeing a psychiatrist on a monthly basis who I could get a hold of at a moment's notice. All of this was not enough. So the welcome addition of free services seemed like a good idea.
We were assigned what appeared to be two very knowledgeable and competent crisis counselors. One worked primarily with Princess and the other worked mostly with my husband and I. Mr. Ed, Princess's counselor, came to her summer school to work with her. He asked her what she liked to do. She told him that she liked to play the game called Sorry. She also told him about her interests. He went out and bought the game so they could play it during their sessions. He also brought her some toys to bring home. He was like Santa Claus to her. The lady counselor, Miss Joy, brought me a list of resources that I could try. Many of which were really of no help to me. I needed someone to come into the home and help me with my daughter.
We did talk and strategize how best to meet Princess's needs. On one particular day Miss Joy came up with a brilliant plan to antagonize Princess to see if she would become aggressive with her. Sure enough that is what happened. Her hope was that if she saw first hand what a trigger was for Princess, that might get her the help she needed. This tactic backfired on Miss Joy. Her supervisor informed her that she was no longer allowed at our residence since my child had "attacked" her. Nice!
Mr. Ed paid us a visit during this time. He also asked if he could contact our private therapist so that the two of them could strategize together.  My husband and I were later told that he told our therapist that "Their home is in chaos. Princess rules the roost there." In other words Princess's behaviors were a direct result of our poor parenting skills. I was in shock when I learned of this. The very person who was supposed to help us actually turned on us.
About a week later, we were told that the county was closing out Princess's file since their services were only for short term interventions. They were not in it for the long haul. I was appalled to learn that they only work in these situations for three to six weeks. I hate to tell them but real life isn't that way. Behavioral health problems are ongoing.
While all of this nonsense was playing out, Princess made two more trips to the ER. On the first of these two trips, she was sent back to us. For the second one, we were finally told that Princess "met the criteria" for hospitalization.
The timeline from the first time we visited the ER to the time when she was finally able to be admitted to a behavioral health hospital was just over a month.  A month that she could have been getting the services that she needed.
Princess was hospitalized a total of four times the summer of 2013. I'm thankful that she's been stable for almost two years now.
I happy for the mundane days now. Happy that I am able to share about music likes and vegetables. I am also happy that Princess no longer needs the free services of the crisis team. May she never require them again.
I'm so glad that many of our days are now filled with rainbows and unicorns.

Monday, July 13, 2015

5 Ways to Ease A Travel Wary Special Needs Family's Soul

Recently my daughter and I took a trip to visit a childhood friend of mine and her family. After reconnecting with my friend via Facebook, I was eager to take Princess up the coast of California to experience sights that she'd never seen before. Princess has Bipolar Disorder and is on the edge of the Autism Spectrum so traveling with her, and life in general, is tricky at best. The lengths at which my friend went to ensure that my daughter and I had a memorable experience, were mind boggling. Keep in mind that up until March of this year my friend and I had not seen each other in over 20 years.

Without further ado I present to you 5 ways to ease a travel wary special needs family's soul:
1) If their child is a picky eater, ask ahead of time what foods their child likes. Then stock your refrigerator and pantry with those foods.
Our host family is vegetarian. I'm not going to lie. It was challenging for my child to adapt to this way of eating, but this family went the extra mile to help my daughter enjoy meal times.

Princess sampling homemade Mac N Cheese Pizza.

2) Create places in your house where the child can have down time.
Our hostess created an art nook complete with all of the necessary art supplies where Princess could express herself artistically. She also brought out some of her daughters' toys that they had out grown. My daughter was in heaven using her imagination.

Our host family's cat, Velcro, as painted by Princess.

A family eating supper as depicted by Princess using our host family's doll house accessories.

3) Speaking of down time, be sure to allow for plenty of it. Many special needs kids require lots of it. When they are on vacation, they may need more than the average child.

Princess enjoying some downtime with Deja, the foster cat.

4) Plan activities that are tailored around the special needs child's interests. My friend took us to see the giant redwoods, to the Monterey Bay Aquarium, and the beach. All things that my daughter adored.

Look at me! I didn't think I could climb on this giant redwood but I did.

 Princess enjoying one of the many tanks at the aquarium.

Princess hard at work building her first ever sandcastle.

5.) There's always time to make new friends.
The daughter of our host family is best friends with a teenager with younger siblings. Our hostess arranged a play date for all of these children at a local park. Princess was in heaven.

Princess and two of her new friends.

Above all have fun and enjoy the experience!

Princess is on the steps of our host family's abode. If you look carefully, you can see Velcro aka the photobombing cat.

I will close by adding that this is the first road trip that Princess and I have ever taken. May it be the first of many. Special thanks to friends who treat us like family.

* You can also be found us on Facebook at Raising a Drama Queen: Musings and Insights in Bipolar Land.