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.

Best. Playdate. Ever!

I know we are celebrating Independence Day in America but I'm celebrating the Best. Playdate. Ever.
Yesterday's playdate exceeded any expectaions I ever had for these sort of things. Here's how it all went down.
A few months ago I met the acquaintance of a local mom online. She and I met a few weeks ago for conversation and some Starbucks. (In case you're wondering, I am currently obsessed with Iced Oprah Chais.) At this visit I met one of her six adorable children. She and I seemed to hit it off well so we agreed upon a playdate to be determined at another time. I was so impressed by this mom, Kim (not her real name nor will any of the other names I'll be using in this post). She seemed so easy going and not at all like a mom of 6 children. I told her all about Princess and her quirks and needs but she did not seem taken aback. She was quite the opposite. She was curious and eager about meeting my little gem.
A couple of weeks later, I contacted her about setting up said playdate. She was so gracious and asked me to choose a place that Princess would feel comfortable at. She even asked me if I would prefer if she only bring her three girls and have her oldest boy watch her other sons at home. I loved her idea of not overwhelming Princess with too many kids at once, so I agreed with it. I chose Chuckee Cheese's for this meet up since it is contained and air conditioned.
On the way there I front-loaded Princess with my expectations. I asked her what she was going to do if she got frustrated. She said she would take a "Cool out" or remove herself from the situation. I also encouraged her to play with all of the girls not just the youngest as I know she likes playing with the younger set since they are mostly followers. We talked about how good behavior would look and sound. She brought up that there would be no negativity from her either. She and I discussed this as well. We role played what lip smacking and eye rolling looked like. Then I explained that there would be consequences for those actions. I felt that she completely understood what was needed to have a successful playdate.
When we arrived this cute blonde child asked me if we were here for a playdate. It turns out that she had asked her mom to show her a picture of Princess and I so she could be on the look out for us. I was impressed from the beginning. Then Faith, the social butterfly, escorted us to meet her mom and her other two sisters. I had already met the youngest, Hailey, at Starbucks and she was just a precious as I remembered. The oldest of the sisters was Ingrid, but they called her Ginnie for short. All three girls were just as charming as could be.
I gave Princess some tokens while Kim and I figured out what we'd order. The girls skipped off once Princess had her tokens so she could join them in the game area.
Again Kim and I chatted freely about many things while the kids played nicely. They checked in from time to time then came and ate when the pizza was ready.
Princess is an odd bird because she usually likes to sit on one side of a booth all by herself since she needs a lot of personal space. Not yesterday. She squeezed herself in on the same bench where two of the girls were already sitting.  When I noticed Princess pushing Hailey, I encouraged her to go to the other bench where Faith was sitting. Princess decided to make the best of it and stayed where she was.
Princess shared pizza and tokens like it was no big deal. I was so proud of her.
After all of the pizza was eaten and the tokens were used up, the girls played in the indoor playground. During this time, Princess got injured on her shin. She walked up to me to show me and informed me that she needed ice and a band aid. Like any mother of a drama queen would, I pointed to the counter and told her to ask for those items from the cashier. My daughter is not shy at all so she hobbled over there to inquire about these items. Surprisingly she only used the ice a few minutes then declared she was cured before returning to play with her new friends.
When it was time to leave, there was no kicking or screaming by any of the children or their mothers. As we were going to our cars, the social butterfly declared that she wanted another playdate with Princess next week.
In the past playdates lasted no longer than two hours and usually resulted in me leaving with a crying, raging or screaming child. Normally when Princess gets the tiniest scrape it is like the world is about to end. We typically don't have a playdate with more than one child at a time because it overwhelms my daughter.
Later last night while we were swimming in our pool, I asked Princess to rate the playdate on a scale of 1-10. She gave it an 11.
There were many factors that contributed to yesterday's success. One of them was her new medication that I cannot say enough good things about. Another one is her school has been giving her so many social skills. Her private therapist works with her as well on many issues. I believe that front loading Princess before we even arrived was an important piece. My new friend's willingness and attitude helped immeasurably. She probably has no idea what a big deal yesterday was for my daughter. My child walked away from that experience with her self confidence boosted 1000%.
For all of you moms out there who have children without Special Needs who teach your child to be accepting of others with Special Needs, I just want to say thanks for spreading acceptance in your own little way.
As an end note: I cannot wait to meet Kim's three sons who are, I am sure just as wonderful, as their mom and sisters.

A Reason for Hope

I have wanted to share all of our good news but wasn't sure how to go about it but finally am taking the plunge. Please know this is my experience. All children are different and respond to psych meds differently but since my daughter has done so amazingly well on this new medication. I felt compelled to share about it with you.
I've blogged in the past a little about out journey so far. You can read more about it here .
In December of 2012 we started our first of many new normals but Princess was stable. Unfortunately the medication that made her stable also made her crave food especially carbs. She ballooned up to over 100 lbs by May of 2013. Her pdoc weaned her off of that med with the hopes of starting a new med soon. Well becasue of an insurance snafu we did not get to start my daughter on a new medication  So last summer Princess was in and out of medical facilities over the course of two months trying to get her meds just right. She would get discharged and be home a few days then would end up having to go right back because she would become so unsafe.  Some  parents with children like mine have coined the term "Street and Treat." That was very true for us. For a while I felt like I was living in the movie "Groundhog Day."  My husband and I were seriously considering a Residential Treatment Center because things had gotten so bad.
In September we were finally able to get Princess in a therapeutic day school that the public school agreed to pay for but she  was still very sick.
In October when we were at our wit's end, our pdoc suggested we try this new med she had heard about at a conference that she recently attended. She said that it had been used to control behaviors in kids like mine. It had been used for a long time in Parkinson's patients but just recently in kids. With nothing to lose I agreed to try it. I was scared to death that this was not going to work and we would eventually end up having to place my child  in an RTC in a few months. Well lo and behold it was the wonder drug.
I cannot begin to tell you what a difference this drug, Amantadine, has made in my daughter's life! She is like a different child. She can attend and focus. She her acts of aggression are considerably less frequent and shorter. Her executive functioning has improved dramatically. Her SPD issues are almost non existent. The change in my child is so dramatic that I cannot believe it is the same child. It is like her behaviors were getting in the way of us being able to see who she truly is inside.
Even when she was stable in 2012, she was nothing like what we are seeing now. Her teachers are noticing as well. I can honestly say that I am enjoying spending time with my child. I no longer dread when the next rage is coming.
Two additional benefits are that we have decreased her other meds significantly and she has lost all of the weight she put on. We were able to go off of one med and are dereasing another. It is the pdoc's hope that eventually Princess will only need to be on one or two meds in addition to Amantadine.
I'll end this by saying that if any of what I am saying sounds intriguing to you, I encourage you to ask your child's doctor  about considering Amantadine for your child. I'm posting some links to some studies/ research about Amantadine if you are interested. Here's one. Here's another. The second link has the information about 1/2 to 2/3's of the way down the page. The facility is a highly respected residential treatment center in Texas.
We had almost lost all hope. We are beginning to dream again.
Never give up!