An Unconventional Friendship

I saw this posted Facebook today: "Don't look for someone who will solve all of your problems. Look for someone who won't let you face them alone." It made me stop and think about my best friend. By all accounts we should not be friends. We have broken all of the rules of who I think a friend should be but still we are the best of friends. I doubt you'll find a better pair of friends anywhere.
In 2009 we had one thing in common- our daughters were both in Kindergarten. Only hers was in my class. Yep my best friend's daughter was in my Kindergarten class.
 I knew that Josie was a single mom and that she was a student as well. She wanted a better life for her child. Somehow in the midst of her busyness she found time to volunteer in my classroom. She helped with mundane tasks and parties alike. We chatted here and there but nothing much until one day, almost a year later, she asked me if I wanted to go see the band "Earth, Wind and Fire" with her. I agreed and we have been friends ever since.
Josie is so different than me in many ways. She's a single mom. She's a grandmother to her older daughter's children. She works two, sometimes three jobs to make ends meet. She has made some choices that she regrets but even more that she can be proud of. One of the best choices that she made was to leave an abusive husband.
Here's the thing though- Josie s like family to me. She loves on my family and I like no one else. She never judges how I parent my child. Instead she's come alongside me and said, "How can I help?" Or "Oh your child needs a sensory break? Here she can hang out in my bedroom to chill out." She's one who I can call or text to pray for my family when Princess is having a rough day. She calls me just to say. "How's your day going? I'm thinking about you." She and her daughter, Princess J, pray for my family every single day on the way to school.  Josie is teaching her daughter how to be a friend with a child on the Autism Spectrum and one with a mood disorder as well.
One of the things I love best about Josie is that she loves to cook for Princess and I. That often means that she's cooking a completely separate meal for my kid with food anxiety and sensitivities but she doesn't care. It gives her great pleasure to see Princess happy.
All of this is done while juggling her grandson on her hip, a cell phone at her ear and at least 4-5 other family and friends in her house at once. She is a master of it all.
It was very tricky when I had to go out on stress leave and subsequently resign from my teaching position. Initially I thought I'd lose my friend but we did a few things that really helped us through this. First we agreed not to discuss school politics. Secondly when I knew I'd be resigning, she said to me," We met at XYZ school but our friendship blossomed at my kitchen table." I cried big alligator tears when she said that.
Yep I have the most unconventional friendship ever but I wouldn't trade it for the world. This is one friend who came into my life and stayed. When things got ugly in my world, she didn't look the other way. Josie looked for ways to help and continues to do so. For this I am grateful.
My hope and prayer is that all parents of Special Needs kids can find a friend like I've found in Josie.  They make our lives so much less lonely.

My Bestie and me at her kitchen table enjoying ice cream together.

Taking Care of me: Sometimes It's the Little Things

Sometimes I am asked how do I do what I do without losing it. Here's my response to that: 
Overall I'm doing pretty good. Last week was extra stressful because of Princess' IEP on Monday, Halloween stuff  the transportation issue with Princess' school that was finally resolved as of Monday and an important planning meeting that was held in LA.   The thing that has really helped me is to make sure I take time for myself so that my tank is not empty. If I give and give, then eventually I have nothing left to give to my daughter. I also pray a lot (somedays the whole day has to be bathed in prayer.) Another thing I do just for me is to order myself an Oprah Chai Tea Latté about once a week.
However, the biggest gift that I gave myself was the gift of counseling. When Princess was unstable, I was dealing with PTSD (due to work problems) and my husband was trying to figure out his next career move; I saw our family therapist once a week. Eventually I started seeing her every other week. CurrentIy I only go every other week with my husband.
 Our family therapist really helped me put things in perspective.
 Here's an example of how I put into practice what she taught me: The other day was super crazy. When I found out that Princess' seat mate unbuckled her seat belt and his own while the van was in motion, I dropped everything. I called and emailed the school right away. Then my husband just happened to come home from work early. I gave him two tasks to help me out while I took Princess to get her nails done at her request. She wanted her nails to match her Elsa dress. Just as Princess and I were finishing up my cell phone rang. It was her school case manager telling me that Princess was not going to be riding on that van route any more. Then a few minutes later the director of our church's disabilities ministry called to tell me that they'd resolved a sticky situation that Princess gotten herself into. When I finished both calls, I paid our bill at the nail salon and left. Thankfully (or was it strategically on my part?) there was a drive thru Starbucks in the parking lot. I utilized their services before driving home. I had an important meeting to go to in LA which was over an hour away. After making sure my husband and Princess had everything figured out for pumpkin carving, I left. I played positive music the whole 75 minute car ride to a place I had never been to before. When I arrived at my destination, there was literally no parking. I would have had to park a couple of blocks away in an unfamiliar and sketchy neighborhood. I circled around the street and came back around. This time the facilitator was standing outside the building where the meeting was to be held. She asked me if I was there for this particular meeting and showed me where to park. It was in a dinky parking lot. I have a van so I had to park it crooked. I worried how the heck I'd get it out after the meeting. Then I realized I didn't need to worry about that until after the meeting. Once inside the building I held my head high and walked in to a roomful of strangers but I determined that these could be new friends and acted as such. At the end of the meeting I asked around until I found someone who could move my car. Guess what? I found a bus driver! Once my car was moved, I went on my merry way playing positive music the whole way home. 


Before counseling any one of those things could have caused me to have a panic attack. We are in the battle zone with and for our kids. We get battle weary. Sometimes dealing with normal life becomes overwhelming. I have found that finding a really good counselor to talk to on a regular basis helps me think through things better.

 And Oprah Chai... Always OCL.

The Person I am Most Thankful For

In this month of giving thanks, many people espouse that they are thankful for their health or their family or even a sunshiny day. While all of those things are pretty wonderful and worthy, I have one particular person that I'm most thankful for. You might think it is my husband or even my best friend but you'd be mistaken. Don't get me wrong both of these individuals have been my lifeline on many many occasions but this person I am referring to, gave me my daughter. Nope I did not adopt my daughter. She's my flesh and blood. My daughter's psychiatrist who I am referring to. She is my hero.
My daughter has a mental illness along with an alphabet soup of other disorders. In the Summer of  2013 my child's mood swings and rages were out of control. They started because a medication that had been partially working for her, caused her to gain weight at an alarming rate. At the same time that we discontinued this medication, a change in insurances led to a different medication not being approved. So now my daughter was off of two drugs that she desperately needed. The months from June-September were a living hell in my house. My daughter could not control her emotions and did not know what she was experiencing so she did what we would all do in that situation, she lashed out. After several trips to the ER where we were turned away because a gatekeeper didn't take us seriously, my daughter was finally admitted to her first of four hospital stays over an eight week period. The behavior hospitals would get her stable enough for the insurance's liking then we'd be home a few days only to return again and again. We could not find the one medication that would bring peace and stability to our daughter's world even though we had finally been able to secure one medication from the pharmaceutical company for her ADHD problems.
After eight weeks of being bounced around, we placed my daughter in a school that would meet her needs during the day but non school hours and days were still pretty rocky until my daughter's doctor AKA, Dr. Wonderful, attended a seminar about a new medication. Shortly after this we had our monthly appointment with Dr. Wonderful. She'd tried everything that she knew and tried to work with the hospitals but unfortunately had come up empty handed each time. In October of  2013, I was informed about this new promising medicine that had helped many Alzheimer patients and was now being used in children with severe behavior issues. As you can imagine, I was pretty hesitant to try one more drug. Over past three years we'd tried many things with only limited success. Since we had a very good working relationship with Dr. Wonderful, my husband and I decided to try it.
We started out very slowly. Within the first few weeks we began to notice that my daughter was not  edgy as much. The executive functioning that she'd always struggled with improved dramatically. So we titrated up a bit more. Little by little we saw more and more improvements. Eventually we no longer saw the severe mood swings. No longer was my child wearing only one outfit due to her severe sensory processing issues and anxieties. Overall she became the happiest I'd ever seen her. We had a new normal in our lives.
When I say Dr. Wonderful gave me my daughter, I mean she gave me the daughter that I never knew I could have. Her mental health impaired her so much that our family was unable to really enjoy the beautiful child that she is. Sure my daughter still has struggles but they are not as disabling as they once were.
For this Thanksgiving I'm saying an extra prayer of gratitude for a doctor who was unwilling to give up on my child. Who believed there was stability out there for my daughter.

This right here is what I would say to other parents in my shoes. Never give up!

Trick-or-Treating in a Strange Neighborhood

Back in 2012 when Princess was in a day treatment  center 100 miles from home, we were stuck with a unique problem: How to handle Halloween?
Traditionally we'd always gone to Princess' grandma's house. She likes to make spaghetti, garlic bread and salad. I once asked her why she always made spaghetti for Halloween. She told me that it was just the easiest thing to make for her kids and grandkids to come and go as they pleased on this special night.  After we trick-or-treated in her neighborhood, she'd load us up with popcorn balls, caramel apples and giant chocolate chip cookies she called monster cookies. Yep I hit the jackpot when I married my husband.
Up until Princess was eight years old this was the only Halloween she had ever known. Even though our family wanted to stick with tradition, Princess was not ready to go that far away from her behavior hospital so we were forced to figure something else out. My husband and I decided to take Princess out to dinner at her favorite restaurant, Soup Plantation, a soup and salad buffet. I had previously looked up where some local malls were and what time they had special activities for that evening.  I had everything planned out to a T. Or so I thought.
When October 31st arrived, we ran into one snafu after another. First unbeknownst to me, the behavior hospital had a parade. Then they let the kids trick-or-treat a little. Princess was upset with me because she didn't have her Pocahontas costume. Her dad was bringing it down later. At the time, he was living at our house during the weekdays and coming down during the weekends. He was coaching and was needed closer to home. I held down the fort at a hotel we'd found. It worked for us for six weeks but boy was I happy when it was time to come home. But I digress.
After Princess' program ended for the day, my husband and I picked her up. Then we went to find a Soup Plantation. Thank God for Yelp. We just put in the name of the restaurant and Boom! we were give several different options. That was a little snafuish as well since we didn't know our way around town but we eventually found one that worked for us.
Princess ate her fill then got dressed in her costume. I have no shame. I let her get dressed in the restaurant restroom. We were not near our hotel room so it would not have been convenient to go there. Once everything was in it's place, we were ready to roll. Except the shopping centers that had festivities were not close by. We arrived at one mall just as they were shutting things down. This wasn't even late but I wasn't in charge so I had no say in the matter. Finally my husband just started driving around aimlessly. We had no idea what to do or where to go. I'm not sure who suggested it but we decided to look for a safe neighborhood, park the car and go door to door with Princess. I mean no one would know right? It worked like magic especially since I have the politest and most outgoing child on the planet. We'd walk up, she'd ring the doorbell, a friendly person would open the door, Princess would say the obligatory, "Trick-or-treat",  & candy would be deposited in her  grocery bag that we'd picked up somewhere along the way. The icing on the cake was that these random people would get a compliment from my child in addition to her thank you. It was a win-win situation for everyone. When we'd gone to most houses in a neighborhood, we'd get in the car and drive to another one. We really made some darn good lemonade that night. It was surreal but it worked. Princess was satisfied as were we.
So as you open your door to costumed children who you don't recognize, keep in mind they may be out of their comfort zone. They may be in your neighborhood for reasons you'd never guess.
Treat all of your doorbell ringers with kindness and love. They may need it more than you'll ever know.

This is a picture of my Jedi Warrior Princess when she was seven.

Debunking the Myth of Horrible Behavioral Health Hospitals

Back when Princess was first diagnosed with a mental illness, I knew we'd have a few visits to  behavioral health hospitals. Never in a million years did I dream that she'd have her first stay in one when she was just barely eight years old.
Like most parents of kiddos like mine we expect the teen years to bring on even more instability than the average teen. Many teens with mental illnesses have to live for a time outside of the home at a residential treatment center. I was prepared for that.
Placing my child in a hospital behind locked doors before her tenth birthday, I was not prepared for. If your child has never been to one, I am here to tell you that it will be alright.
Let me back up a bit. At the start of Princess second grade year she had a really difficult time adjusting to the start of school. She, like many children on the Spectrum or with mental illness, does not like transitions at all. On her first day back to school she got aggressive with several of the younger children in her multi-age class. Since this was not her home school, the principal revoked her transfer since she was deemed a behavior problem. She advised us to keep Princess at home for awhile until she settled down at bit. She also recommended we look int hospitalization. At the time both her therapist and her doctor were strongly opposed to both ideas. Looking back I wish that we had sought hospitalization then instead of waiting for another year until things became unbearable.
Both of the professionals that we trusted, and still trust to this day, had of heard terrible experiences at these places. Since Princess was only seven when hospitalization was first mentioned, they both felt we should wait a bit longer. For their part they were readily available on many many occasions.I never felt that I had to wait until my next appointment to talk to one of them to figure out what to do during a rage. There was even one time that Princess' therapist talked to her over the phone to calm her down.
Finally though in October of 2012, it was time. I won't say I was fortunate to have been home instead of teaching but God definitely knew that I'd be needed at home during this time so I'd gone out on stress leave just two weeks prior to my daughter's admittance in a hospital 100 miles away. You can read more about my reasons for going out on a stress leave here.
We ended up at the ER of a local hospital with a mental health unit upon the advice of some friendly community helpers. The doctor on call quickly determined that indeed my daughter needed to be hospitalized. On top of her severe mood swings, her OCD issues were making her life miserable. It was around ten o'clock in the morning when we arrived but it wasn't until 5 a.m. the next morning when Princess was completely admitted.
What most people are unaware of is that there is a severe shortage of beds for the mentally ill. Some parents have to wait up to three days for a bed that never materializes. Even though the hospital we went to had a mental health unit, they did not take children as young as my daughter. I was told that the county that I live in has only 13 beds for kids like mine. That is mind boggling considering that I live in a sprawling metropolis. Imagine if this were a stroke victim or someone with a serious medical crisis that needed immediate attention.
When I grew weary of waiting for the hospital to find a bed, I casually strolled over to the nurse's station and asked for an update. I was told they hadn't been able to locate a bed in our county. I advocated for my child and let the nurse know we'd be willing to travel out of county. Finally a few hours later, we were informed that a bed had been located but it was 100 miles away. My husband and I talked it over with our therapist and Princess' personal doctor. While neither one of them had heard of the facility, they looked into it more on their own. The therapist even called down there to see if children were kept separated from the teens. (See why I love this woman?) She was told that they were but we later found out they were on the same floor but had separate programs and only passed each other in the hallway. We even asked God for guidance on this difficult decision. We  really felt God's peace on this one.
I am not sure it took so long why but after many more hours of discussions and paperwork shuffling between both facilities and our insurance, we were told that Princess had been approved and that an ambulance was on its way to transport her.
I was allowed to ride in the back with her on her first of many ambulance rides. We arrived at our destination in the dead of night. Princess was checked over and admitted properly.  Princess was too tired and dazed to realize that she wasn't coming home with us. I looked at my watch as we left the building. It read 5:00 a.m. My husband and I just gave each other zombified looks in bewilderment. Then we looked up and saw a gift from God. It was a hotel directly across the street. The amazing thing about this is that it is located in an industrial park. I didn't even want to think about how much it cost, I just wanted a place to rest my weary head for a few hours.
Sure enough I was up shortly after the crack of dawn since we'd been told we could see our baby girl in the morning before heading home. Once nice thing about the hotel we stayed at was that it served a fairly decent breakfast that was included with the room rate. While I was chomping at the bit, my husband slept a few more hours. On my way out of the dining hall, I grabbed him a muffin from the breakfast bar while he made himself a cup of coffee in the room.
At the hospital we were excited to see Princess but she was not thrilled to see us. In her mind, we were the jailers locking her up in prison. She desperately wanted to come home with us. I remained brave and left after only the briefest of visits.  The hardest part was watching her through the closed doors as she cried out to my husband and me. It was one of the best decisions I ever made though because this hospital gave her the help she needed in a loving but structured environment.
My husband and I gathered our things from the hotel room and drove home in silence and tears. We were shell shocked to say the least.
Princess was discharged about a week later but was placed on partial/outpatient hospitalization. Again there were no places near our home, so we chose to keep her where she was. We determined that I would book a room at a nearby hotel because even though we loved the hotel across the street we could not afford an extended stay there.  My husband took the train home as he was coaching at a private school that needed him.
With a partial program the patient is in a facility for the majority of the day but then spends the evenings at home. In our case it was a hotel.
I was pretty sure Princess wasn't ready even for the partial placement and was proven right on a Saturday after her first week in it. On this particular weekend we stayed near the facility instead of driving home as this was the advice of our beloved therapist.
Princess became upset with me at a local park so I told her that we'd be going back to the hotel. She got in the car but opened the car door as I was driving off. I quickly closed the door and locked it while driving back to the hospital where Princess spent another week inpatient.
She then spent another three weeks at partial at this same facility after her second discharge. She was at the behavioral health hospital a total of six weeks.
Friends from  our adult fellowship at church were extremely generous and gave us money to offset some of our hotel and gas expenses.
What I learned from all of this was that we were taken care of. Princess was taken care of by kind souls who showed her a lot of compassion. We survived.
As I close I wanted to share two poems with you. The first, Welcome to Holland, has been around awhile and is widely quoted by Special Needs parents. The second, Welcome to Beirut, is written from a mom of an Autistic child but I can relate to much of it. The good times are even sweeter after being in a war zone

The Kindness of Strangers

I have a neat story to share. Tonight after Princess' therapy session, we grabbed a bite to eat at a soup and salad buffet type restaurant by us. One of my daughter's favorite parts is getting the baked goods there. When we got to that section of the restaurant, Princess noticed there were no cinnamon apple muffins that she'd seen advertised by the cashier so she politely asked the baker about them. After the baker apologized that they hadn't been taken off of the menu from the previous week, Princess graciously forgave him for not having them. A little while later, I went up to get more food. The baker approached me and asked me if my daughter was still there. I said indeed she was and that we'd be there for awhile longer. It turns out that after we'd left his station, he found some of the mix and made some apple cinnamon muffins for my daughter which were still in the oven. He planned on bringing them over to us when they were done but I was not to spoil the surprise. As you can imagine, I had a hard time keeping my promise but I'm happy to report that I did. Princess was so excited when she saw the muffins. I told her that he'd made her day. She even went back for more later. I let Princess know that since she'd acted so mature and displayed good manners, this young man went out of his way to make her happy.
When we were done with our meal, we asked for the manager to come over. She arrived with a big smile on her face because she already knew what we were going to tell her. Apparently our muffin man had asked her permission to perform his good deed. As she was leaving our table, she asked Princess if she'd like some muffins to take home. Those muffins are pictured here.
One thing that made the kindness shown to us even nicer, was that Princess had had a rough day at school again. This was the perfect ending to what started out as a yucky day.

 P.S. I have emailed the corporation about this story. I'll let you know if they respond.

 

The funny thing about these muffins is that they are GF. Shh! Don't tell Princess. 

The Artful Doddger Would Be Proud

In the movie, "Oliver", The Artful Dodger shows young Oliver Twist how to earn his keep. One of my favorite songs from the movie has the line, "You've got to pick a pocket or two." I'm happy to report that Princess won't need these lessons. She's already picked her first pocket err... purse- Mine. All for the sake of gum.
I'll admit her love of gum is my fault. At the age of three I introduced her to the fine art of gum chewing. She has never looked back. She adores her gum just as much as I do if not more. I often buy her her own gum to keep in her purse or in the car near her. If we're out and about, I'll gladly share a stick with her. All she has to do is ask but I guess she forgot that.
Let me back up a bit. On Saturday I took Princess to one of the California missions nearby. Although her school is great at teaching her replacement behaviors they're not so great at teaching subjects like Social Studies. So in an effort to fill the gaps, I've been taking her to museums and exhibits lately. We were going to take the train there but ended up driving down instead. We had a lovely time at the mission. Princess was even brave enough to pan for gold and make an adobe brick both of which she would not have done a year ago. Putting her hands in muddy water and then getting mud all over her fingers was too much for her SPD issues.

 Princess is taught the fine art of panning for gold by a staff member

Later in the day my husband took the train down and met us at the mission. Then we all drove home together.  We really had an enjoyable time.
Sunday morning on the way to church, I looked in my purse to get a stick of gum. Lo and behold I couldn't find any. I figured since I was toting a purse that I don't usually use, I'd just forgotten to transfer the gum over. After church, my husband and I picked up Princess from her Sunday School class. Her sweet aide writes her an encouraging note each week. As I was putting the note away in Princess' purse, I noticed this pack of gum.

 This gum is really quite delicious.

My little darling had helped herself to the whole pack of my gum. The thing is I don't even know when she swiped it from me.
On the way home I asked her about it without getting too confrontational. She admitted to taking it from my purse "Because I wanted it." I explained to her that we don't take things that don't belong to us because that is considered stealing. Some might be tempted by shiny object. My child was tempted by gum.
I think I may have to put a lock on my purse now since I have a sly one living at my house. I can't wait for the teenage years. I bet they're going to be so much fun. (Sarcasm intended)
Do you know where your gum is?