Bloggy Moms

Monday, December 30, 2013

A Day of Firsts

Wow today Princess made some amazing achievements! For most NT (Neuro-typical) kids these might be no big deal but for my sensory challenged, focus challenged drama queen they are huge.
The day started out innocently enough. We were invited to a birthday party in the morning, had plans to go visit the doctor for a flu shot (Only I didn't tell Princess about this until I absolutely had to.) and were going to end the afternoon with a visit to the tdoc (therapist).
On the way to the party, the thought occurred to me that I could possibly leave Princess at the party for an hour. I had an errand to run at the pharmacy. (In case you're wondering, they do know us by name.- I'll write more about this godsend in a future post.) During a break between songs on the radio, I asked Princess what she thought about being left at the party for about an hour. She responded affirmatively. We talked about what to do if she had any problems. She knows the hostess very well and had been to several of her child's parties before. A few minutes after arriving at the party, I politely excused myself but not before making sure that someone had my cell phone number in case an emergency arose. Upon my return an hour later, I found Princess smiling and happily engaged in a friendly game of Capture the Flag. It was brought to my attention that my daughter had a mild injury while I was gone but chose to keep playing even though there were no band aids. Yippee! Score one point for attending a party without mommy or daddy there the whole time. Maybe next time, I can leave her the whole time.
Near the end of the party, I told Princess that she was going to get a flu shot today. I told her that if she did a good job that I would take her to get ice cream. In the past we have had major meltdowns over blood draws and injections. I can recall at least twice where I had to physically hold her with the assistance of 3-4 medical professionals. Today Princess asked me not to discuss the shot with her as it made her nervous. When we got to the doctor's office, my daughter did well until it was time for the actual shot. Then she covered her arms and hid her head. With a little coaxing from me she finally gave the nurse access to her arm. I encouraged her to look at me,  not the needle. That (and a lot of prayer on both our parts) seemed to do the trick. For the first time ever she did not cry while getting vaccinated. Yippee again! Score another point for bravery at the doctor's office.
After a visit to the local ice cream shop, we went to the tdoc's for her weekly visit. We finally headed home for what I thought was going to be a relaxing evening. Princess has other plans. I had reminded her that she needed to pick up all of the clothes on the floor of her bedroom before starting any new activity. Typically she will just stuff the clothes in either the hamper or back in the drawer. Not today. Today she decided to go through her clothes. A purging of sorts if you will. At the end she had more room for her new clothes from Christmas. She also folded up her clothes neatly before gently placing them in the drawers. What's pretty incredible here is that I usually sort through her clothes when she is not home because she has difficulty parting with things. We can end up witnessing a meltdown or she and I can have an argument. Either way it is not a pretty thing. The fact that Princess was willing to go through her things on her own is a huge step for her. Yippee times three for this feat!
As I reflect upon today, I am reminded that a lot of people helped make today's successes happen. I am grateful for our village whether they be doctors, therapists, friends or family. We are blessed that so many individuals are uphold our little girl in prayer as well. These accomplishments might be short lived (and that is OK). For today I am proud and grateful.

Just a side note: If my memory serves me correct, this is the first  children's party that Princess has been able to attend much less been invited to for a variety of reasons. You can read more about my thoughts on birthday parties here

Tuesday, December 17, 2013

Homework Happiness

Yep you read that right! Homework happiness. Today for the first time EVER Princess completed her homework packet in one day. Well all but the Spelling pretest but that is because I insisted that she do that on Thursday. (I know I'm a big ole meanie.)

In the past homework was one of the biggest battles that we had with Princess. Tables were scratched, chairs were thrown, pencils were snapped. Everything that you can imagine happening, happened. We had lots of things happen during homework that one would not imagine as well. None of it was good.

It finally got to the point where I would ask Princess if she wanted to do homework. If she said no, I wrote " Refused to do homework." on her homework sheet for the day. This was not a battle that I was willing to fight on a daily basis. I knew that I would lose. Every. Single. Time.

Even though we asked for the school to stop assigning homework to Princess. They told us that she needed it. It would help her practice the things that she learned in class. They did agree to modify the amount of work but Princess still refused to complete her homework almost daily.

On the rare day that Princess was in the mood to do her homework, she lacked focus and was distracted by everything including the lint in the air. What would normally take 5 minutes to complete, took Princess at least 30 minutes.

Now that everything is going so well for Princess and she is in a period of incredible stability, she almost begs to do homework daily. She has become the "self-starter" that she never was. I can actually be doing something in another part of the house while she completes her homework.

We are still taking this stability thing a day at a time but I am savoring every moment of every minute of every hour. I do hope it continues for a very long time.

I am trying not to worry when the stability will end. Right now I am trying to be "in the moment." To celebrate every victory no matter how big or small. For today it was homework happiness.

By the way, I wanted you to know that I have a Facebook page for this blog. Here is the link: Raising a Drama Queen on Facebook. I'm posting little nuggets there that I don't always post here. I am also finding it is a good way for me to get feedback from others. Check it out, then  "Like" it and share it on your Facebook wall. Thanks for your support.

Monday, December 9, 2013

Musings From My Little Philosopher

 "Stable is a place where horses live." I have seen this quote on a tagline of another mom of a special needs kiddo. Every time I read it, it makes me sad. I am sad because it means that this parent has given up hope that their child can ever be stable. I refuse to do that. I have seen times where my child is stable so I know it is possible.
I have to admit that we had a pretty yucky summer and early fall. There were times when it was pretty awful but I never gave up hope that one day my child would be stable. I somehow knew that with the right puzzle pieces (meds, school, therapy etc.) stability was possible.
Right now we are seeing more stability in Princess than we have ever seen. It really is a lovely thing. I don't know how long it will last so I am enjoying every moment, every hour, every day that Princess has it.
I asked her on Saturday why she thinks she is doing so well. Her response blew me away. For a 9 year old to understand this is remarkable. Here's what she said. "I think it is everyone being so positive with me. I have a lot of help. The pills I am taking help me. Dr. Godsend, my feelings doctor and Mr. Color are all there to help me." Dr. Godsend (not her real name) is her psychiatrist. The feelings doctor, as you probably guessed by now, is her therapist. Mr. Color is a counselor at school. Yep she got it right all of those things are part of the puzzle.
Then today I got this little nugget. Princess and I were in the car on the way home from her appointment. I don't even remember what we were talking about but all of a sudden she said, "I know why I was put here (on this planet.)" I asked her why. This is what she said, "I was put here to cheer people up, to pray for those who are sick and hurting. When I grow up, I want to be rich so that I can give to others who have no toys or food or homes. I want to make good choices from now on. I am so proud of myself." I almost had to stop the car because I was crying tears of joy. Then she said,
"Thank you for helping me so much." Wow! I do not make this stuff up. Incredible!
Like I said before we don't know how long this stability will last but we are definitely grateful for it.
This is what stability looks like. I don't care if my child is famous, gets all A's or is the star athlete. To me if she is stable and she has God's heart, that is what is most important.
I am here to say that stable is not just a place where horses live. I've seen it in my child and it is pretty amazing. 

Monday, December 2, 2013

Tough Choices

I have a confession to make. I am not perfect. I am sometimes selfish. Yes even when it comes to my own daughter's needs. You see sometimes things are going so well that I don't want to risk the possibility of things going south.
Today I had to make a tough choice. Some might say I had to put my big girl panties on.
For a few weeks now I have been putting off this decision. Sort of procrastinating if you will. I had decided that we had had enough changes that our family and Princess in particular would do well without this possible change.
Like all procrastinators my hesitancy came out of fear. I was afraid of what I would hear. Afraid of what the doctor would say. On the other hand if I put it off for much longer, I risked putting my daughter's well being in danger.
What I had noticed, after it was brought to my attention, was that my daughter's hands were shaking. I feared that it meant that the new medication that had brought so much stability to her, and in turn our family, was causing this.
After Princess went to school today and saying a little prayer, I called the doctor to get her input on this. This particular doctor has her messages go to voice mail but she is really good about returning calls in a timely manner. True to her character she called me back in about one hour. I explained the problem to her. She told me that it probably wasn't the new medication but another that Princess has been on for several years. With this particular drug we recently found the perfect dose. At a lower dose Princess's moods seem to not be as stable.
The doctor told me that we would need to decrease the dosage of this tried and true drug. So beginning tonight we did just that.
The doctor is hopeful that with the newer medication, we should not see any changes with the decrease in the other drug  other than the gradual lessening of the side affect. This mom, however, is worried. We'll know in the next day or two what our next steps need to be.
In the meantime I know that I made the right choice by telling the doctor because I was told that the longer we allowed the tremors to continue, the harder they would be to reverse them.
Even though we don't know what the near future holds, I can be confident in knowing that I made the right choice for my daughter by doing what needed to be done. Procrastination did not win here.
Have you ever let your fears win?