What Does Stability Look Like?

For a little over a year my daughter has been experiencing the longest period of stability in her 10 year old life.  Her father and I couldn't be happier.
A question I hear over and over is, "Is stability possible?" Some people believe "Stable is a place where horses live." When Princess was so unstable due to her mood disorder, I knew that stability was possible but it sure seemed a long way off. I also believed that stable was more than just a place where horses live.
Before stability came to live at our home, things were pretty chaotic. Even though we tried really hard to set limits and keep a structured environment, the littlest thing could trigger a meltdown of epic proportions. Sometimes we knew what the triggers were but other times we walked on eggshells. It was not very fun to live at my house.
Then Dr. Wonderful prescribed Amantadine. About the same time, Princess started at a Therapeutic Day School. Those two things combined have helped my daughter achieve the level of stability she has today. There is still the occasional day where Princess will have a meltdown but those days are less frequent. Additionally the duration and frequency of the rages have diminished.
When I ask my child to pick up her clothes, she does so. When I ask her to help with dishes or laundry, I may have to ask a second time but she will complete the tasks. When it is time for homework, Princess gets right to work with very little assistance from me. When it is time to stop a preferred activity, my daughter stops. If my daughter makes a poor choice that requires a consequence, she accepts the consequence. Recently Princess got upset about something my knight was telling her. She didn't like what she was hearing but she willingly took a cool out in her room until she was calm enough to rejoin the family. On that same day she recognized what she was doing and said, "That was an outburst. I'm sorry." Tonight as she and I were running errands for Christmas, Princess asked me if we could go home. She's learning to listen to her body. She knows how important it is for her to rest when she gets tired or overstimulated. That's a big step towards maturity.  Finally Princess has shown no aggression towards my husband or I in a very long time.
Before stability all of the above was not possible. Homework and chores were not expectations because they required too much effort on Princess' part. No matter what sticker charts or behavior modifications we used, battles ensued at the mere mention of homework or chores. We believe that just going to school and performing simple tasks really took their toll on Princess.
There are a few things I learned a long the path to stability. One was that stability is not achieved over night. We spent three years looking for it. Princess went through many many medication trials. She's had a number of hospitalizations. Another thing I learned is just as a child with Autism or Downs Syndrome has that condition but they learn to function in society with it, so does Princess still have her alphabet soup of diagnoses. Lastly we see that all of the things that were making her act out have calmed down quite a bit.  However, I do find them lurking in the shadows. We are ever mindful of them.
I have no idea how long this period of stability will last but for now I am enjoying it. My knight and I are living in the present. When and if Princess becomes unstable again, we have hope that it will end because we've seen stability and we know how wonderful it is.

*Please note: This is my family's experience. Yours may be different.
Additionally, do not stop or start any medication without the advice of a licensed doctor.

A Very Special Gift

It was December of 1997. I was celebrating Christmas for the first time with my fiancé's family. When it came time for me to open my gifts, I received three themed gifts. The first was figure skater ornament. The second was a novel about an olympic ice skater. After I opened the second present, my fiancé reached under his mom's sofa and produced an envelope that contained two tickets to see a professional ice skating show. I was utterly speechless. I'd never received something like this ever. I'd come from very meager beginnings. I knew who I'd be taking to the performance, the gift giver.

A week prior to this particular Christmas, I  had received another very special gift, my engagement ring. At the age of 32 I was considered by many to be an Old Maid. I'd even had a parent of one of my students ask me if I was gay since I was still single. My response to her was that I had not found anyone that I had wanted to spend the rest of my life yet. Being a chid of divorce and seeing how hard it was on my mom and feeling it for myself, I wanted to make sure that when I married it was forever.

I did marry this generous gift giver eight months later. Over the years my husband has proven his love for me over and over again. We have dealt with cancer twice (his), the death of my parents a year a part,  mental illness (our daughter's), and job loss (mine). Many men would have walked away from even one of those things but my husband has stayed by my side so we can do this thing called life together.

Parenting a Special Needs child alone is enough of a challenge as it is. I feel so blessed to have a man of such strong character walking by my side. He is willing to do whatever our child needs- therapy, medication, counseling, research, etc.- to ensure she live the best life possible for her.

Truly the second best gift I've ever received. The first one was the gift of God's son Jesus.

Eighteen Christmases later I still have the figure skater ornament. My husband and I hang it on our tree every year. The book and the performance are cherished memories.  I wear my engagement ring proudly although it is now paired with my wedding ring. These rings represent love- no less today than 17 years ago.

The best gift of all those many years ago was the gift of my husband- Someone who truly knew how to show me unconditional love. A man of character who could weather any storm life threw our way.

My Husband and I celebrating our 16th Wedding  Anniversary

More Than Just a Gift Basket: What Our Church Really Gave My Family

Last night was our church's disabilities ministry's annual Christmas program. There were so many in attendance, our church may have to have two performances next year. At the close of the event, the director of disabilities invited everyone to a cookie and hot chocolate reception in honor of the performers. She also informed us that each participant would be receiving a gift basket as a way of saying thanks.
I was in shock and awe over receiving such a lovely gift. It was filled to the brim with many goodies. My favorite though was a framed picture of my daughter.
More importantly are the many gifts our church has given my family already. We are so blessed that our church has a heart for children and adults of differing abilities. It is truly remarkable and rare. I know of many Special Needs families who are unable to worship together at their church of choice.
When my daughter was so unstable and unable to function in a regular Sunday School classroom, the director of disabilities found her a place to assist with severely disabled young adults. We told our daughter that she was "helping" others. She helped out for about six months until we found the right mix of therapies and medications that allowed her to become stable enough to reenter regular Sunday School with her 4th grade peers.  Even then we knew she needed 1:1 support so a college student was provided to become her buddy. This volunteer buddy also helped give Princess extra support this past summer during Vacation Bible Study (VBS). A true gift since she'd been unsuccessful in VBS for the past few years. Her buddy continues to assist her weekly in her 5th grade Sunday School class this year. Princess sees this young lady as the big sister she never had. They have very special bond. As a result of working with my daughter, her "Big Sister" wants to pursue a career of helping other children with disabilities like my daughter.
Another fabulous gift the director of disabilities gave our family was the gift of friendship through moms of Special Needs kids. The director realizes the need for these moms to connect. Many of them do not have anyone who can relate to them and understand what they go through on a daily basis. She hosts several get togethers a year for these moms.
At one such gathering I met a wonderful lady who has become very dear to my family. She helped us advocate for more services for our daughter. At her prompting and guidance, I decided to become an educational advocate myself.
While attending a  luncheon for moms of Special Needs children I met a mom who has a daughter with challenges similar to my child. It turns out that she is an elementary school teacher so we found an additional interest in common since I am a former educator. This friend has a very special place in my heart. There's nothing like having someone who has walked in your shoes to talk to, to cry on and to laugh with.
As I perused the gift basket tonight, I said a silent prayer of thanks for a church with such a vibrant disabilities ministry. My family and I are so blessed by many individuals who add so much to our lives.

Our Basket of Goodies

Telling My Special Needs Child The Real Deal About Santa

My husband and I come from very different backgrounds. I was a city girl. He was a country boy. I was raised by my single mom who depended on Welfare to help her meet our needs. He was raised without want by two very loving parents.
Our parents even approached the whole Santa thing differently. One of the things my dad told me  before he walked out of our lives when I was around six or seven, was that there was no such thing as Santa and to stop believing in him.  My husband's mom still hangs stockings and fills them for every family member, young or old, claiming they are from Santa. I was lucky to get socks and underwear for Christmas. My husband always got whatever was on his wish list- a tradition that is still carried on to this day.
When Princess was born. my husband and I had a very frank discussion about what role Santa would play in our daughter's life. Since I felt like I missed out on the magic, I was all in. My husband wanted our daughter to experience the wonder and awe of Santa like he did.  Based on our experiences, we agreed that we would encourage Princess to believe in Santa.
We were experts at crafting this marvelous secret. My husband would make our daughter's favorite Snickerdoodle cookies for Santa. I would buy the perfect gifts and stocking stuffers. We found the perfect Santa with a real beard to visit. There were many Christmas Eves that my husband stayed up until the wee hours putting together the latest and greatest must have toy for Princess.
As she got older, we got got more creative in keeping the magic alive. When Princess awoke one Christmas morning, there was soot outside the fireplace where Santa had walked. Last year my daughter even received a lovely letter on North Pole stationery from Santa telling her that he couldn't bring her a real live puppy but instead found her a large overstuffed one.
We were in deep.
This year we decided to tell her the real deal. Our fear was that another child would tell her. That, in our opinion, was worse than if we told her ourselves.
So on a Sunday afternoon recently we sat her down and presented her with this letter.- Thanks Pintrest for the idea.

"2014

Princess,

 We know that you have asked us before if Santa is real. We know that you really want to know the answer.  After seeing how much you are growing up, we know that it is time to tell you.

The answer is YES Santa does exist- just not the way you have always believed.  I am not Santa, neither is your dad. There is no one single Santa either. Santa is bigger than any one person and his work has gone on longer than any of us have lived. Santa is lots and lots of people who keep the spirit alive. He doesn’t live in the North Pole but lives in our hearts. Santa is the magic, love, and spirit of giving to others.

 Dad and I are the ones who read your letters, picked your presents with love, and placed them under the tree. Dad and I did this just as our parents did this for us. One day you will do the same for your children.

We know that God can be hard to understand sometimes, but we hope you’ll always remember that He sent us His son, Jesus to die for us. That little baby in a manger grew up to be a man who died on the cross for our sins. That is the greatest gift of all.

Just as God sent the most perfect gift He could think of Dad and I tried to pick the perfect gifts for you each year.

Here’s something really awesome: Dad and I spent about a month getting ready for Christmas but God is spending lots more time getting heaven ready for us.

We do ask that you help us keep Santa alive for kids like Ricky, Justin and any other kids who still believe. A child has to be ready to believe this kind of secret. A child’s parents should be the ones to tell them just like we told you.  Just as you found joy in believing in Santa we can assure you that you will have that same feeling in watching others believe in that magic.

We love you very much Princess. We hope you have enjoyed all of your Christmases and your presents.

Love,

Mom and Dad"

We asked her if she wanted one of us to read it or if she wanted to read it. She said she'd read it. She made it about halfway through before her lip started quivering. By the end she was in tears. When she finished reading it, she went over to my husband and really started sobbing. I did not have rose colored glasses on thinking that Princess would be totally fine with the concept of her mom and dad being Santa but I did not expect her to be as upset as she was.

After she cried with her father for a few minutes, she came over to me and cried on my shoulder for a bit. She looked straight at both of us and called us liars. She was shocked, appalled and disappointed that we, of all people, had lied to her.

I tried explaining to her that we did it out of love for her but she would not listen and instead ran off to her room to bawl her head off. I was worried that this was the trigger that would be the end of over a year of stability for her. This would send her back to the behavior hospital. She was that upset. We had not seen this type of reaction to anything for a very long time.

After about 30 minutes, she emerged. She went to our family room and played quietly with her dolls. I sat in there with her for most of the day just in case she needed me. My husband and I put our plans for the day on hold so that we could be available to talk if she wanted us to.

Eventually Princess came around. I don't think she's at the point where she fully "forgives" us or even understands why we did what we did but she has come to terms with the fact that Santa exists in our hearts. She grasps that parents play Santa for their children.

Since Princess was so upset and her heart was "shattered" (her words), we decided to have a family session with her counselor the next day at her regularly scheduled appointment. Seeing our family therapist really helped all of us process this more.

The true test as to whether or not Princess was moving on, came yesterday when we went to see Santa. Princess passed with flying colors. She sat on Santa's lap, told him what she wanted for Christmas but didn't say a word to him about knowing he wasn't real. As Princess and her BFF skipped off after leaving Santa, I heard both of them whispering and giggling because they know a secret that the little kids waiting in line did not.

Princess and I are making plans to play Santa for another child who still believes. It may be one whose dad is incarcerated or one who doesn't have much. Whatever the case, I know that Princess will want to help another child believe in the magic and wonder of Santa just as she did for ten glorious years.

What I've learned in all of this is that I must remember that because my child feels everything so deeply, I need to be prepared to offer her extra guidance and support. I cannot assume that because it is or was not not a big deal for me that it won't be for her. The other piece to this is to continue to utilize the services of professionals who can help my husband and I navigate these rough waters with our daughter.

This is Princess visiting Santa last year

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!