Bloggy Moms

Tuesday, May 19, 2015

How My Husband and I are Defying the Divorce Rate Odds Among Parents of Special Needs Kids

Marriage is hard work, harder than I realized when I was single. I'm more likely to have a marriage that ends in divorce since I am a child of divorce. When my husband and I were engaged, we did everything in our power to ensure that we were ready for a lifelong commitment. The most important thing we did was to seek out premarital counseling. The three sessions that our church offered were not enough. We felt we needed more so we sought out a private MFT (Marriage and Family Therapist). That did the trick. Or so we thought. Along the way, life threw us a few curve balls: cancer (my husband's), mental illness (first my parents' then our daughter's), and job loss (mine). Any one of these things could have led to our marriage's demise. My husband and I chose to not let these things deter us. We pulled up our bootstraps and did the dirty work. Then our world came crashing in on us when our daughter's unique challenges really tested us. We were really at a loss as to what to do. Then at a school meeting for our daughter, the school psychologist suggested we seek out family counseling. Our daughter left that school shortly after that meeting but we took the advice we were given.
I asked one of the pastors at our church for a recommendation for an MFT who might help our family. We were referred to a wonderful lady who we saw for almost five years until she recently moved out of the area.
This counselor was not only concerned with the emotional health of our daughter, but the health of our marriage as well. It was important to her that we learn how to parent this child and care for ourselves also. 
Early on this special needs journey I read from parents who are nearing the end of their child's teen years. They said that the one thing they wished they had done was to spend more time on their marriage. It's kind of like a car. A good one needs a tune-up every so often. A car, or marriage, that's traveled a lot of miles needs more attention in order to keep it running well.
A huge part of this equation was my husband's willingness to even go to counseling. He was humble enough to admit that he needed counseling just as much as our daughter did.
We still have hurdles and obstacles, but we have learned a lot of techniques that help us jump over them with as much ease as possible. One of the techniques that our therapist taught us was to try to make sure we are on the same page as far as parenting goes.  For many years I was super strict and my husband was more lenient. We learned to meet in the middle. In the heat of the moment if we cannot agree on how things are to be done, one of us will call the other over to discuss how best to resolve something. It’s kind of like a time out for parents. We learned how important it is to take the time to discuss how our day was once our daughter is in bed. We have to remember that we are individuals too, not just parents. Finally, we had to learn to give each other breaks even if it is difficult. When our daughter was unstable, it’s been as simple as my husband staying home while I do a Starbucks run or drive around the block for 30 minutes.

I vowed to do my very best to stay married. Having a special needs child makes it difficult, but not impossible. I’m confident that the techniques my husband and I have learned and implemented will help us defy the high divorce rate in the special needs community.

My husband and I celebrating our 16th wedding anniversary last year.

*Another version of this also appeared on The Mighty.

Wednesday, May 13, 2015

An Epic Meeting

After the AACAP Legislative Conference, which you can read about beginning here, my daughter and I stayed an extra day in Washington, D.C. seeing some of its historic sites. That afternoon we left D.C. to head to Virginia for more sightseeing the next day. The evening that we arrived at our new hotel we met up with my blogger friend Julie from Ketchup with a Side of Autism.
Julie drove down from Maryland and greeted us in the lobby of our hotel in Virginia. We had planned on having dinner at a nearby restaurant. As we were leaving the hotel it started to drizzle. I debated about running upstairs to get my umbrella but at Julie's suggestion I decided against it. After all, the restaurant was just around the corner. How wet could I get?
Julie used her powers of persuasion to convince Princess to try this little Italian restaurant she'd seen. Princess's first and only choice had been McDonald's, but she agreed to try something new. When we got inside the restaurant, Princess was thrilled that they had gummy bears in their reception area. She put a few in a cup and followed us in. Princess happily played on her iPad while she ate her cheese pizza as Julie and I chatted. I could sense that Princess wasn't exactly keen on Julie that is until Julie offered to help her pick out a dessert.
After we'd had our fill of both food and talk, Julie asked us if we'd walk her back to her car which was within walking distance. Unbeknownst to both of us, that darn car moved itself or else the parking garage moved. We spent the next two hours getting soaked in the rain while looking for the blasted car. We asked several people who worked at the mall where Julie parked her car where the elusive garage was. We followed their directions explicitly, but we were only following a rabbit trail. I was pretty worn out from all of the walking we had done earlier in the day so I was a little slow. Julie, however, was on a mission. Princess was caught in the middle. She kept asking a panicked stricken but composed Julie to slow down and wait for her mother. I felt bad that I couldn't keep up and Julie felt bad she couldn't find her car. Julie is a passionate person, but she kept her cool in all of this because she knew that if she lost her shizzle that Princess could lose hers as well. Since Julie's daughter is Autistic, she knows that would not have been a good scene for anyone. Besides I'd left the Ativan back in the hotel room. If I'd had it, I'm not even sure who I would have given it to.
At one point, Julie suggested that Princess and I go back to the hotel since we knew where that was. I told her that I could never live with myself if we left her to fend for herself and something happened. I remembered the military phrase, "No one gets left behind." Unbeknownst to many people, Julie has gone to bat for me on more than one occasion. What kind of friend would I be if I left her when she needed me most?
Finally, Julie was struck with a lightning bolt of an idea. She pulled out her iPhone and entered the address on her parking stub into her maps app. Neither one of us had even thought of that idea. Once she had the address and Siri talking to her, we found the car in no time flat. We all piled in and she drove Princess and I back to our hotel.
As she drove, I shed a little tear because in some small way I had repaid a little of the kindness this friend has shown me time and time again. Or maybe it was just a raindrop from my non-waterproof windbreaker. We'll never know.
 I'm happy to report that Julie made it back home safely to her family. I made sure that she texted me when she got home.
Princess learned a valuable lesson in perseverance that epic night. I learned that I am blessed to have people like Julie in my life. What did Julie learn? The Mother of all Ketchups learned how to how Siri and I are her best friends.

Here's a picture of Julie and I before our epic adventure

Friday, May 8, 2015

Talking About Mental Health on Capitol Hill Part3

If you have not read part 1 of this series, you can find it here. Part 2 can be found here.

After we returned to our hotel, we had a little bit of time before our last meeting of the American Academy of Child and Adolescent's (AACAP) Legislative Conference. My daughter, who was still sleep deprived from the night before, decided to take a short nap while I relaxed and ponderered over the events of our amazing day. We didn't get to actually meet any of our elected officials, but we did get to go to three of their offices and speak with their assistants about the national workforce shortage among child and adolescent psychiatrists, the need for sweeping reform in mental health and to thank these members of Congress for their support of continued funding for the Children's Health Insurance Program (CHIP). Even though Princess didn't say much at most of these meetings, she was the face of mental health. The representatives probably couldn't believe that this sweet angelic child had ever faced the adversity that we spoke of. I wish I had had more time to tell them more of our amazing journey. I do have their email addresses so I can email them. Hmmm...
After a time of reflection and rest, we headed down to the grand ballroom for our debriefing meeting. Many of the psychiatrists, residents and fellows shared wonderful stories about their meetings. There were also family members like Princess and I who shared their stories as well. I shared how at one meeting an assistant asked why psychiatrists who serve the adult population cannot be retrained to serve children and adolescents. At that moment, I did not have a good answer for him. I think I was just dumbfounded. If I could turn back time, here's what I would have said: "I believe a great psychiatrist is like a great teacher. Some teachers are professors. They are very good at teaching at the college level. Still others are fabulous preschool or kindergarten teachers who teach children at the beginning of their academic careers. The remaining teachers fall somewhere in between these two ends of the spectrum. We would never ask a kindergarten teacher to teach college students. It is just not her forté. Conversely, we would never ask a college professor to teach kindergarteners. He (or she) would fail miserably because he (or she) is not gifted in this arena. The same is true for gifted child and adolescent psychiatrists. They know children and adolescents best. They know how to develop a rapport with them. I'm sure my daughter would not have wanted to see a doctor who she didn't feel was able to relate to her."
I don't fault this man. He may have never had experience with a child or teen with mental illness. That's OK. My daughter may have given him a little education. Her mother will follow up as well.
As the meeting and the conference drew to a close, I have to hope that my presence, my daughter's presence, along with the other doctors and family members attending AACAP Legislative Conference made a difference for the future of mental health in our nation.

Stay tuned here as I delve more into the key issues presented at this conference. I'll also keep you posted as I follow up with our legislators. Don't worry though, there's always a funny story lurking. After all, I am raising a drama queen.

Monday, May 4, 2015

Talking About Mental Health on Capitol Hill Part 2

On part 1 of this series the day ended where Princess did not fall asleep until 11:30. As you can imagine the next morning did not start out well. We were supposed to be in the hotel's ballroom at 7 a.m. for breakfast and our final training. I pushed the envelope and let Princess sleep until 6:45 a.m.
She was so tired that she kept putting her head down on the table during the training. She did surprise me though because she drank three glasses of orange juice. She never drinks OJ at home. But I digress.
After almost two hours, we were asked to join up with other conference attendees from our respective states to coordinate taxis and see who we would be attending meetings with. California had ten people representing it. We discovered that all ten of us would be speaking to Dianne Feinstein's and Barbara Boxer's assistants. Then we would splinter off for meetings with our local representatives. Princess and I were to speak in Ed Royce's office with a doctor from Davis, CA.
Once we met the doctor from Davis, Dr. J., I arranged with a mom I'd met the previous night to share a cab to Capitol Hill. The leaders of AACAP encouraged us to take cabs to get to our first destination and to allow plenty of time for traffic and security at the various buildings. It turned out that we had about 45 minutes before we left the hotel. I used this time to freshen up. Princess used it to catch a little bit more shut eye.
Finally, it was time for our taxi cab. Up until that moment, Princess had only ridden in a taxi twice before. Now she's a veteran since we took a cab a few more times before leaving D.C.
When we got to the building where our first two appointments were going to be held, we were prepared to go through security, but we were not prepared for the blast of the arctic wind upon exiting the car.  Somehow we made our way to Dianne Feinstein's office and met up with the rest of our group.
When we finally got called into the meeting room, her assistant had us go around the room to introduce ourselves. Princess proudly proclaimed, "My name is Princess. I have Bipolar Disorder, ADHD, and OCD and I like puppies and my friend Alex." Shortly after this she decided it was time to try slipping a short nap in. This was one of those moments that I decided was not worth making a battle. She was quiet and not disturbing anyone so I let her be.
At this meeting, one of the doctors introduced our key issues: 1) The workforce shortage in children's mental health. 2) The need for comprehensive mental health reform and 3) Continued funding for the Children's Health Insurance Program (CHIP).
In Senator Feinstein's office, I shared how our family had personally been affected by the workforce shortage. One of the first psychiatrists that my daughter had seen almost five years ago had a huge caseload. As a result of this, we waited over 45 minutes for a five minute visit. There was no way my child could be adequately served in that amount of time. Fortunately for us we were eventually able to find the right doctor. Many in the U.S. do not have that luxury. Did you know that there are only 8,300 child and adolescent psychiatrists? Our country needs approximately 30,000 to adequately meet the needs of the over 75 million children with mental health issues. The average wait time to see a child psychiatrist is 7.5 weeks. Can you imagine a child with any other life threatening illness having to wait that long to get the care he so desperately needs?
Our meeting time with Senator Boxer's assistant got moved up, but Senator's Feinstien's office was late in seeing us so before our first meeting was finished a few of our group members rushed off to our next appointment to let them know we were on our way. We wrapped things up in Senator Feinstein's office and walked over to our next appointment.
As introductions were once again said around the table, Princess added that she liked Barbies to hers. I almost died, but then I remembered that mental illness is just a part of her. My wise child already knows this and shared what else is a part of her. Thankfully at this meeting Princess just yawned but did not fall asleep. Embarrassing as that was I took it as a sign that she was perking up.
I myself felt even more comfortable and shared more of our story. These were the kind of meetings where you kind of have to jump in if you want to be heard.
I shared that the reason why we need mental health reform is to ensure that all mental health patients receive the same level of care regardless of whether they have private or government insurance. In our case, Princess was able to receive fabulous outpatient treatment after her first hospital stay because at the time we had private insurance. Less than a year later we had to put her on Medi-Cal, California's government run insurance for low-income families. During the few months she was on it,  she needed to be hospitalized again. Medi-Cal does not cover outpatient treatment so Princess was hospitalized three more times in two months. This actually costs the taxpayers more money not to mention the trauma it caused my family. If we had a system where care was coordinated, this would have never happened.
At the end of this second meeting, we parted ways with our new friends, but stayed with Dr. J. so we could find the next building for our third meeting. Dr. J. was fabulous with Princess. Every time she complained about being cold, her feet hurting or anything else; he just redirected her by asking her about books or movies she liked.
When we found Ed Royce's office, we still had about a half hour before it started so we found a cafeteria to eat our lunch at. I kept looking for some senators or representatives, kind of like looking for celebrities in Hollywood but without any luck.
We threw out our trash and wrapped up our uneaten food before heading back to Ed Royce's office. Princess wasn't very happy when we later had to throw out our drinks at the visitors' center.
When we had been to our representative's office before lunch, Princess noticed a cute dog in the lobby. Unfortunately for her the dog had gone for the day by the time we came back.
The great thing about our last meeting was that since there were only three of us, we all got a turn to give our input without feeling rushed. This was the meeting that Princess really shined at. She had perked up and there weren't as many adults present. She even took the time to share our Ronald Mc Donald House story.
We made sure to let the assistant know that we were appreciative that Ed Royce had supported extending funding for another two years to the Children's Health Insurance Program (CHIP). This program provides matching funds to help families obtain medical insurance, who might not otherwise be able to afford it. It serves over 8 million children. Parents still pay a portion of this insurance, but it is supplemented by this federal program.
Thankfully for Princess this was our last meeting of the day. Dr. J. invited us to go with him to speak to another representative he was scheduled to speak with later in the day. I felt that Princess had reached her limit for the day so I politely declined.
AACAP had scheduled one last event on Capitol Hill, a group photo on the steps of the Capitol Building, but it wasn't until an hour after our last meeting. We discovered that there was a newly opened visitors' center there. Apparently so did a school group of about 100 teenagers. Dr. J. came to the rescue and asked the guards if our little group of three could go in ahead of this large group. They agreed, but no one told the chaperones we were going in first. As you can imagine it was a little chaotic. In the rush, Princess' head got hit by the bar on the door. She was a little dazed but had no visible bruising. A guard ushered us into the nurse's office for an ice pack, but the nurse was not there. Since Princess appeared to be doing alright, I suggested we just go to the gift shop. That was one of the best decisions I made that day. Princess found a shirt she liked and some free postcards to take back to her classmates.
We made our purchase quickly and figured out how to get back to where we needed to be for the group photo pictured below.
It had been a pretty full day so Princess and I, taxi cab pros, hailed a cab to take us back to the hotel where we relaxed until the debriefing a little later in the afternoon.

Coming soon: Part 3- Where I talk about an epiphany I had and our adventure to local sites.

A portion of our group on the steps of the Capitol Building. 

Friday, May 1, 2015

Talking About Mental Health on Capitol Hill Part 1

On Wednesday, April 22, 2015 my daughter and I flew from Los Angeles, CA to Washington, D.C. to attend one of the most important events in her ten-year old life. We were slated to participate in the American Academy of Child and Adolescent Psychiatry's (AACAP)  annual legislative conference. We were joined by approximately 200 doctors, residents, fellows and other family members for the common cause of addressing mental health concerns on Capitol Hill. I am very qualified to speak on this topic because I have lived with someone who has a mental illness. First it was my parents and now my daughter.
After we found our hotel, we had almost a  day to adjust to being in a different time zone. AACAP prepared us very well for the task at hand. They sent us one-page briefs a few days in advance. They also hosted several training sessions at the host hotel. I, of course, read up on these briefs and even studied up a bit on the legislators my daughter and I were slated to visit that Friday. I wasn't exactly sure how to prepare my daughter other than to tell her that she was going to be speaking to Congress. She was so cute, in the days and weeks leading up to or visit and even while we were in D.C., she told anyone who would listen that she was going to speak to "Congress about mental health." She wants to be a lawyer some day so this was perfect for her.
 During our first training, one of the doctors at our table suggested that Princess and I go up to the front with him to the mock meeting to tell our story. Since we were in the hotel's spacious grand ballroom, we were given a clip on mic. Princess wanted one as well. I felt since she didn't know the topic very well, it wouldn't be prudent for her to be miked so I dismissed her. While we were on stage, Princess added her two cents about "Not wasting money like my mom always says." That sealed the deal. After that, Princess was a star. All of the doctors told her she was so brave and that they were so proud of her. I should have listened to her in the first place.
After that afternoon's training, we went back to the hotel room to rest before our big evening. We had been invited to dinner by the Depression and Bipolar Support Alliance as a way of thanking us and other parents who volunteer at A Balanced Mind Parent Network. There were a few things that stood out at this dinner. Even though it was loud, Princess had her blingy noise canceling headphones and her iPad so she tolerated the noise really well. Secondly all three children, ranging in age from 10-19 chose Mac N Cheese for their entrée selection. Some things never change. Lastly, on the way back to our hotel one of the moms lent Princess her heavy coat since this mom, me, didn't realize that 60 degrees in D.C. is not the same as 60 degrees in CA. Oops!
We were pretty done after our dinner and headed up to our room to catch some shut-eye only a certain little person couldn't fall asleep until 11:30 p.m. Even on a school night this is a bad idea. Stay tuned to see what happened the next morning....

Coming on Monday 5/4:
Part 2- Tells more about our trip and explains about the first issue we presented on.

Photo credit goes to my friend Dawn at Hardly Bored

The Sentence I Never Thought I'd Hear

The other day I was having a conversation with my daughter. It went something like this:
Princess: Mom I really hate to say this, but I think I love you more than dad.
Me: What make you think that?
Princess: Well I've been thinking. You know how I was always a Daddy's Girl? I think I am now a Mommy's Girl.
And then my heart melted. I assured her that she could love both her father and me equally, but she insisted that she loved me more. On that day, I did not argue with her. I just basked in the sun of this new found revelation of my daughter's.
For many moms hearing their child say those three little words, "I love you", eventually will still melt their hearts, but they do lose some of their novelty, specialness if you will. I think I will cherish them a bit longer than most. It's not because my daughter is nonverbal. It's because she was so unstable for many years. There were many times that this precious child screamed, "I HATE YOU." At the time, it hurt to hear that phrase even though I knew it wasn't how she really felt. She was angry and confused at the time. One day when she was upset with me over a homework battle, she etched the words, "I HATE MOM." onto our kitchen table. I shed a few tears over that one. We still have the table with those spiteful words embedded in it. My husband has not sanded them out yet. I'm not sure I ever want him to. They serve as a memorial of sorts. They remind me of how far my daughter has come.
With the right medication and therapy, my child is happy and thriving. Our home is a peaceful one now.
Gone are the days of aggression. Gone are the days when I had to lock myself in my bedroom in order to be safe from my own child. Gone are the days when my child was someone I did not enjoy being around. Gone are the words "I hate you mom!".
Those ugly, dark days have been replaced with cuddles. With random shouts of "I love you!" With my precious girl telling me that she loves me more than her dad.
Recently in the midst of so much joy and peace, I asked this reborn child of mine why she used to say that she hated me. She explained that she never really hated me, she hated the way she was feeling. She was confused and had to take it out on someone. Since her life was in such a turmoil and she did not have the words for what she was feeling, it was easier to lash out at me.
I'm thrilled that my daughter has learned how to express herself in a more positive manner. It warms the cockles of my heart to hear her say that one sentence I never thought I'd hear: I love you mom.
This was at a birthday celebration for me. The restaurant was too loud for Princess so she wore her noise canceling headphones. Obviously she still enjoyed being with her mommy.  
*Please note: A different version of this appeared on The Mighty as well.