OCD Can Ruin a Lovely Day

There are days lately where I think that maybe it is time to close up this blog for awhile. After all Princess is doing so well. Then there is an incident like yesterday and I realize just how much mental illness is a part of our lives. I am grateful that the Bipolar side is being controlled with meds but right now, today, we are dealing with OCD.

OCD at its worst can take over a person's life. In our case it also takes over our family's life.

Yesterday the place I thought was the most likely to feed OCD did not. Instead a place I would have never guessed did. Let me explain. As you may know Princess and I went on a mini vacation. Yesterday I decided to take her to one of the beaches in LA. This one has a carnival feel to it. Princess was a bit nervous as there was sand which has been a problem for her tactile senses in the past. We also ate at a seafood restaurant which can be an assault to her sense of smell but thankfully it did not smell fishy. Yep over all we had a pretty great time at the beach.

When it was time to leave I decided to take the scenic route which ended up taking us a lot longer to get home that I would have liked. Princess did great in the car ride by keeping herself busy with her sticker book and rockin' out to the music on the radio.

When we got closer to home, I said that I was going to a drive thru at a fast food restaurant minutes from our house. She let me know that she had to use the RR. Before we got there I asked her if she thought she could wait until we got home and she said she did. Of course while we were in line, it became clear that she was in "emergency status." I told her to jump out, use the RR fast and get back in line. Silly me I thought this would be simple as the line was long. I ignored the voice in my head that warned me that OCD was lurking. As I moved up in the car line, I prayed that my daughter would be finished by the time that I got to the drive thru window. That was not the case. The cashier even let me pull up a little since there were no cars behind me. This establishment is not like many McD’s that has a parking spot where you can wait if your food is taking extra long.  At one point I got out of my car and walked to the window to ask the manager to keep an eye on my daughter. Eventually another car pulled up in the drive thru and my gig was up. I actually had to pull my car around the block, back through the alley and then park in the strip mall adjacent to the restaurant. Then I entered the restaurant where the real fun began (insert smirk here).

Once inside I noticed that there was a lady standing outside of the RR who politely but firmly informed me that she was next. I let her know that it was my daughter who was inside. She stepped aside and let me talk to my daughter through the door. I told Princess that she had to hurry up as others were now waiting but alas my words fell on deaf ears and it was another 15 minutes before she emerged. I ended up watching the men’s room while the lady who was waiting to use the women’s room went inside. I was so embarrassed. There was honestly a point where I wondered if we’d have to do something to break the door down.

When Princess finally emerged, we pretty much walked in silence to the car. On the way home, I let her know my displeasure and how her OCD impacted not only me but the restaurant patrons and employees as well.  I was pretty ticked.

After we arrived home, I went straight inside after telling Princess to gather a few of her things. Here’s where things got really dicey. About ten minutes later, I realized that Princess was still not inside. So I went to our van only to find her a sobbing mess in the back seat. I coaxed her out and let her know that it would be OK. (Insert mommy guilt trip here.) A few minutes later I went to check on her in our bathroom because she was supposed to be getting some tissues to dry her eyes. I asked her what was up. She told me that she could never forgive herself. Oh the burden she must feel. She gets what she is doing is wrong but she cannot stop OCD from bossing her. As I mentioned before we do use a combination of medicine and therapy to help tame the OCD beast. I think a phone call to the doctor is in order today. Stay tuned.

* As a side note: I was finally able to get Princess mind off of the ugliness by watching "Mrs. Doubtfire" with her while cuddling with  her on the couch. Maybe I'm not the worst mom in the world after all.

OCD as a Comorbid Disease in Those with Autism

In honor of Autism awareness month I am going to be posting comorbid diseases and how they present themselves in Princess. Please note that Princess's main dx is still BP but I am seeing that she has a lot on common with kids who have Autism as their main dx. This will be an occasional series.
OCD is the beast that we have to battle with on a pretty consistent basis. I even read that Carly Fleischmann, co-author of "Carly's Voice" and a voice for Autistic people everywhere, has OCD as well. The rituals of OCD can take over a person's life. They end up missing out on so much because the rituals are time consuming and paralyzing. 
We first noticed or rather acknowledged that Princess had OCD about two years ago. She went through this phase of using excessive band aids and having to change her undergarments seven times a day. At one point we were going through a box of band aids a day. She had a band aid on literally every finger. It wasn't enough that she had a band aid, there was an obsession with their use as well. First the band aid had to be put on just so. If not, she would take it off and start over. Then if she washed her hands and the band aid or band aids got wet, the whole process started over again. We tried limiting the number of band aids that Princess was allowed. We also stopped participating in the ritual of putting the band aids on. Another way that OCD manifested in Princess was with her shoes. It she had Velcro shoes, the straps had to be pulled as tight as they could go. They also had to be lined up perfectly, no crooked lines at all. If she wore shoes that had laces, the laces had to be pulled tight, double knotted and exactly the same length. The shoe obsession caused her to wear out shoes much faster than her peers. more importantly it caused our family to miss church. It also caused Princess to be extremely late to school on a number of occasions.
After awhile, the band aid fetish progressed into the hand washing obsession. Princess washed her hands frequently and for extended periods of time just to make sure that they were clean. I knew we had a big problem when we went through a gallon of soap in two days. Silly me. I thought if I stocked up on soap, then I wouldn't be running out to the store so much. Instead Princess took it as a sign that it was OK to use as much as she wanted.
Looking back now, there were early signs that Princess had OCD. One of them was that the top sheet on her bed had to be just so or she couldn't get comfortable. Another was her need to wear the same outfit every day for months on end,
OCD will always be a part of Princess's life but there are things that can be done to make it more manageable. One is to take Zoloft. This works in amazing ways to stop the obsessive thoughts. Another lifesaver is therapy. Since Princess's therapist is aware of this problem, she works with her to help her recognize the behaviors and stop them. Finally as parents, my husband and I have to choose not to be OCD's ally. We keep only a limited amount of band aids available at all times. If Princess runs out, she has to buy more with her own money. I do not adjust her bed sheets either.
In a way, OCD can be like any dx. It has it's ebbs and flows. Right now we are seeing it flare up a bit but it is still manageable.

Seeing Things From a Different Perspecitve

I am a little unnerved about something today. I have a choice to either let it eat away at me that people who should care about my child, don't or I can choose to focus on those who do. Guess what I am choosing to do?

Good thing I went to church this morning. During worship one of the songs had these words: Nothing compares to the riches of Your love. Your love is enough. Amen to that.

Instead of  posting a rant,  I am going to tell you about those that God has brought into our lives and what a difference they make.

First of all Princess has three amazing therapists. The one at school is there for her every day. They talk about things that bother her and how to be a better friend. This therapist, Miss A., also has group sessions with my daughter and her classmates. Additionally the school district pays for a therapist from an outside agency to come every other week to meet with Princess to help her build her friendship skills even more. He also meets with my husband and I twice a month as we learn how to parent this child. Since he sees Princess at school, he is a great liaison between school and home. Finally there is our beloved personal therapist. I cannot say enough about this wonderful lady who helped steer us in the right direction from the very beginning almost 4 years ago. One thing that is so good is that she does play therapy with Princess to draw things out of her. She tells Princess the things that she needs to hear but that she might not like to hear. There have been a few times where I thought for sure that Princess was going to say that she didn’t want to go back to see Miss R. after a particularly rough session. Princess understands that Miss R. cares about her so she always wants to go back to see her the following week.

Princess has two doctors who are amazing as well. Dr. R. has been her pediatrician since she was just a few days old. Before Princess had any dx at all. I was struggling with feeling like a loser mom, this doctor took me aside and told me "You are doing a great job!" I didn't even tell her that I was struggling but she could tell. When our therapist told us that we needed to get the dx of ADHD from our child's doctor, Dr. R. signed paperwork stating such. This little piece of paper was all that we needed to get Princess the 504 that she needed so that the school would stop suspending her. (That 504 is now an IEP which is better but is a story for another day.) The other doctor whose feet I would like to kiss is her pdoc. This woman has worked so hard to get my child stable. She tried many medications but it never felt like Princess was a guinnea pig because my husband and I were part of the decision making process. This doctor also kept us well informed. She is usually available via phone or email. That has been a lifesaver in our moments of crisis. Additionally she was the one who asked us to consider Amantadine, what we now refer to as the wonder drug. She is one of those individuals who never stops learning. She went to a conference where she learned about this new to us drug. Then she presented the idea of trying it to us. I am grateful that she is a lifelong learner.

The school that Princess goes to has been a godsend as well. The structure that they provide for Princess is fabulous. We can tell that the staff- van drivers, PE teacher, classroom teachers, aides etc.- really cares about my child and the other children who attend their school.

Our church gets how difficult it can be to be a part of a worshipping community when you have a child with a disability. They are supportive in ways that go beyond my comprehension.

Then there are our friends. They love on my daughter like nobody's business. They ask me how she is doing, how they can pray and basically love on us. It is reassuring to know that my best friend's daughter is also my child's BFF. This child is truly a gift from God. She knows how to love and support my child even on days when it is hard. My BFF reassured me recently by telling me that she wasn't going anywhere. They are in it for the long haul. I only have a few friends who I can count on but God brought the right ones to me.

Today is a day that I can choose to be negative or I can choose the positive. I choose to reflect on those whom God has brought into our lives rather than those who choose not to be supportive.

Adventures With KiKi

Saturday night Princess could not find her beloved KiKi. In fact we did not find it until yesterday. During the time that it was lost Princess told me that she felt that she was letting KiKi down because she promised her (Yes Kiki is a girl.) that she was going to take her to college.  I silently chuckled because it is both cute and funny.
In case you did not know or figure it out, Kiki is short for Blankie.When Princess was little and was learning to talk, she would say the same syllable of longer words twice. Slippers became slip slips and Blankie became KiKi. Somehow KiKi stuck.
 It is very interesting how KiKi came to be. When Princess was about 1 1/2 a friend of mine noticed that she liked to touch things. She suggested I get a yard of fleece blanket material from the fabric store, cut it into pieces and fringe the edges of each piece. The theory being that if Princess lost one piece or it needed to be washed, that I would have another piece ready to go. The problem with most theories is that real life plays out much differently. Princess become attached to KiKi and only wanted that one. When I tried to swap it out for another, she knew. She even called the other one Pretend KiKi. Suffice to say that KiKi is now like the Velveteen Rabbit only instead of fur that got rubbed off it was fleece pills that went missing. Instead of eyes that fell off, it was "arms" ie fringes that wore off. Oh how Princess has loved her KiKi!
 I will tell you that KiKi is no ordinary blankie. She comforts those in distress and heals wounds. When Princess was little, she firmly believed that if you rubbed Kiki on a sore your sore would feel better instantly. KiKi has her own persona. Her sole purpose in life is to comfort others especially Princess. If someone is crying, KiKi will wipe away the tears.
Princess takes her everywhere. As she has gotten older her father and I have had to come up with some rules regarding KiKi. She is no longer allowed at school because Princess will shove  her in her classmates' faces asking them to smell her. She has to stay in the car when we go into stores. Otherwise KiKi becomes a distraction to others.
Interestingly enough, when Princess is doing well, we don't see as much of KiKi. It is like she doesn't need it the more secure she is.
We have tried not to let Princess become too dependent on her. When KiKi is lost we no longer look for her as much. We encourage Princess to do that.
I am fully aware that most NT kids are not as dependent on their comfort item at age 9 but I do not feel it would be beneficial to push Princess to get rid of KiKi until she is ready to. I do believe that KiKi will one day be put away for safe keeping but she will never end up in the trash. She is like another family member.

Here's a picture of Princess's beloved KiKi.

In Reponse to Your Rant

I read a bog post the other day that really got me unnerved. It was about how moms of Special Needs kids are always bragging about our kids' achievements. It said that we don't take the time to listen to moms of NT (Neurotypical ie. normal) when they share or celebrate or "brag" about their kiddos' accomplishments. The blogger felt that the moms/ parents of Special Needs children get tunnel vision. When I was done reading it, I felt like I has just had a tongue lashing.
I'll admit, I am guilty as charged. I do have tunnel vision where my child is concerned. I am even guilty of celebrating every single little milestone. I'm sure my friends get tired of it. Fortunately for me. They don't tell me. They let me bask in the glory.
I may never stop marveling at my child's achievements. I may find it difficult to celebrate that Johnny scored the winning goal in soccer. Please bear with me.
Do you know why I celebrate every time Princess does something new? It is because I know what we went through to get here. I know that my daughter had a melt down every time we even mentioned the word "shower". I know there was a time that pencils and chairs would fly through the air during homework. I remember when play dates ended in tears. There were many times that I had to call a parent to pick up their child early from a play date because my child was having a rough day.
So you see the fact that my child is blossoming is a huge deal for me. I do savor every minute that my child has success. It is akin to a baby taking their first steps or saying their first words because we have never experienced these things before.
There's even more reason for me to celebrate than most parents of Special Needs kids. It is this, because my daughter has a mood disorder and has not yet entered puberty we have no idea how long this period of stability will last. You better believe I am going to relish every single milestone my child reaches.
You see for NT kids the obstacles that my child has had to overcome are just that normal.
If you'll humor me and celebrate my child with me, I promise I will try to celebrate your child with you. Please be patient with me though. Parenting a Special Needs child can be all consuming. Let's all try to understand each others perspective more.
I'd like to know your thoughts on this.
Please check out my FB page called- Raising a Drama Queen: Musings and Insights in Bipolar Land

Sometimes Mom Can't Fix Everything

Recently I wrote about my  mended relationship with Princess. You can read about it here, if you missed it. Today Princess learned that not all relationships can be mended. It was a tough and painful lesson.

For the last few months Princess has asked me to set up a play date with her really good friend. She does not attend school with this friend nor do they attend the same church. So she has not seen her on a regular  basis since they were both in the same class in second grade. This child really clicked with my daughter. I envisioned them being life long pals but alas that may not be  the case.

They are not in the same place they once were. Her friend moved away for a bit. Both Princess and her have left the school that they first met at. Then there's that little incident over the summer that has really kept them apart.

When Princess was really struggling last summer, there was an incident with this child, her family and my daughter that did not end well. It was one of those things you wish that you could have a do over for. Unfortunately it happened and there is still fall out from it to this day.

When Princess asked me to set up the play date with this friend, I did not expect it would be as hard as it was for her to move on. I have called, texted, stopped by,  and sent a private message on Facebook to the child's mother. I let her know that we are sorry for the unfortunate incident and that Princess is doing much better now. When I stopped by the house, the mom seemed like she was genuinely happy that I stopped by. She assured me that her daughter would be coming over for a play date soon. All of these contacts were made in the last two-three months.

I told Princess that the difficult part of her challenges are that she may lose friends over them. Not everyone is able to move on and forgive. It is what it is.

Today on the way to the todc (therapist) for Princess's weekly session, she again asked about a play date with this friend. I told her again that I had reached out to her friend's mom but that nothing had come of it.

Once we got to the todoc's office, I informed Princess that I was going to go in the session with her for a bit. Once in the room, I explained the situation to the tdoc. I told her that I needed her help in explaining to Princess that this friendship might be lost.

We talked with Princess about it for a bit. Then the waterworks started.  I think she used up about half of the tdoc's Kleenex. The tdoc said, "If your tears could talk, what would they say?" Princess replied, "I'm just afraid she won't want to be my friend any more." Then later on she said that she probably scared them and they might be afraid something like that would happen again.

I consoled my daughter through her grief. I felt helpless knowing there wasn't much I could do or say to make the situation better. This was one of those times that I just offered up a hug and a shoulder to cry on. I even told her that I was sorry that I could not make it all better. Oy those boo boos when she was a toddler were a piece of cake to fix compared to this.

Then the tdoc suggested that Princess write a letter of apology to this friend. She told her that she may never hear from her friend again but she was doing the right thing by apologizing. Once we got home from the appointment, Princess watched a short TV show to relax her. Now she is working on her letter without any reminders from me.

One thing I did express to Princess was that since the incident last Summer, she has changed so much. Her father and I are proud of her.

It is rough being a mom. I hope we don't have many more days like this but I know that when we do, we will tackle them with God's help and with our Village of support.

A Mended Relationship

 If you have been following my blog for awhile, you know that I recently resigned from teaching to tend to all of Princess's needs. Yesterday we were in the neighborhood near my former school. It kind of made me sentimental about my teaching career. Princess was in the car and asked me if I miss teaching. I told her that most days I do not. Then I asked her if she knew why I am not teaching any more. She said "So that you could help me." Wow! She gets it. I asked her if she liked that I was home more. She replied in the affirmative. Then she went on to sing my praises. When she was done, you would have thought I should have won the mother of the year award. I was in shock and awe.
For many years it was not like this at all. To say that I had a strained relationship with my daughter would be putting it mildly. I know that many parents of kids with mental illnesses will tell you that they have a tenuous relationship with their child as well. If I am honest, when I was working, it was easier to work all day than to be home with Princess. I could ignore all of the issues at home while I was teaching. My workplace became an oasis of sorts.
I also knew that my husband had a very special bond with our daughter. Princess told me many times that she loved him more than she loved me. I was happy that my daughter had such a special daddy but was sad that Princess's relationship with me wasn't even close.
For six weeks in late 2012 Princess and I spent a lot of time together while she received outpatient treatment in a neighboring county. It was too far to drive back and forth every day so we stayed at a hotel during the week nights and drove home on the weekends. We spent a lot of 1:1 time together during that time. I believe that was when our relationship really began to heal.
As time has gone on and I am able to be more available to my daughter we have both learned to appreciate each other more. I have learned many things about my daughter. I learned that it is important that she knows that I am there when she gets off of the school van every day. It is vital that I am there to assist with her homework.  It is paramount that I am able to have the time to email her teachers and staff members about concerns. It is significant that I have the flexibility to stay home with her if she is sick or did not get a good night's sleep.
Recently Princess had a bad case of the stomach flu. I was up from 12 a.m.- 6 a.m. with her. When I was teaching, I would have either been stressed about missing work the next day or woke my husband up to ask him to take a shift for a few hours. Since I am now home full time, I did not have those concerns.
I understand that not all parents of kids with Special Needs can stay home but for us it has proven to be highly effective. Another mom of a Special Needs kid put it this way "My child only has one childhood. Right now she needs me in it more."
There are many factors that play into why my relationship with my daughter has been mended but I believe the number one reason is just being able to be there more for her. For that I feel blessed and grateful that I listened to God when He told me to make Princess a priority.