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!

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

Field Trip Drama and Aha Moment

About three weeks ago I was told by Princess's teacher that Princess could not go on the upcoming field trip unless I went. This was because she has recently had some non compliant issues with the aides. The classroom teacher was not planning on going on this field trip so she felt that Princess might have trouble listening and following directions which is why I was requested to go. I know now that this is discrimination based on the 504 Rehabilitation Act but since I had already promised my daughter that I would go, I went ahead and went. 
I was told by Princess's teacher that I should drive my car down in case Princess had an issue and we needed to leave.
While on the field trip, I observed a few things that I thought were interesting. I am more convinced than ever that Princess would benefit from a highly trained 1:1 aide.
When we got to the place, one of the teachers had all of the kids line up to use the restroom. She asked me to go in with my daughter as perhaps she had been informed that I was there to help with her. Princess had no issues in the restroom. However, about 5 minutes after getting back in line with the other students, she whispered to me that she felt a little tinkle. I went in the restroom again with her. She told me that she needed a new pair of underwear. I did not have a clean pair with me.  I even went to the car to see if there was a pair in her back pack. Upon hearing there was no underwear Princess became increasingly agitated. She even told me that she wanted to go home because she wasn't having any fun on the field trip.  I told her that she had two choices: 1) to ignore the sensation or 2) let it get the best of her and then she would miss out on the field trip. I am happy to report that she let the feeling pass and was able to stay and fully participate.
Later there was a touch tank with sea creatures in it.  Princess told me that she wanted to touch the sea star (AKA star fish) but could only do it if there was a wipee or hand sanitizer available for afterwards. I asked around and one of the teachers found a wipee for us. I told Princess that I had one so that if she wanted to try touching the creatures she could. Well she did eventually try touching the sea star. She totally flipped out and started crying very loudly. I was able to comfort her and calm her down. Within a short amount of time, Princess rejoined her group.
I did notice that Princess did a little bit of pushing and shoving that had to be nipped in the bud.  She wanted to see what was in the touch tank but did not ask a boy to move over so that she could see. She also wandered off (not very far) at least once but I was able to bring her back to the group.
The rest of the field trip went without incident.
I am not sure how even Princess's teacher could have dealt with those things if she had been trying to attend to the needs of the other students.
IMHO, I feel that a properly trained aide could attend to Princess's needs. What would the teacher have done if she had a full blown melt down over the restroom or the touch tank issues?
When Princess was not having her issues, I hung back and did not hover. I tried to let her experience the field trip as fully as she was able.
Some may say that Princess acted the way that she did because I was there. Remember though she was already having trouble at school which is why her teacher told me that I had to go. Her teacher told me that Princess has had trouble on other field trips but that she tries to keep her by her side at all times. Difficult I am sure.
I noticed that Princess did not have any friends so to speak. She has been going to this school since December so I would have thought she would have had one or two little friends.  I digress. That is a topic for another day.

So here's my Aha! Moment:

As you may know I taught for over 23 years.  On occasion we would tell parents that if their child misbehaved, they could not go on a particular field trip. At a previous school I taught at, the sixth grade parents were told that their child might not be able to attend the yearly week long outdoor science camp if they had poor behavior. This was told to parents over a number of years until one principal told the teachers they could not make that statement or rule. At the time I often felt bad for the teacher and the other students who worked so hard to earn the field trip. In my naive opinion I thought that the other kids should not have to suffer and have their field trip potentially ruined because of another child's actions.
Now that I am the parent of one of "those" children, I think differently. If we look at field trips and overnight camps as part of the curriculum, then all children should be afforded the opportunity to go. If a child needs extra support, then a highly trained aide needs to be provided so that the child can access the curriculum.
In his book "The Explosive Child" Ross Greene says "Kids will do well if they can." This means that children don't mean to act up. They don't inherently want to misbehave. He believes that challenging children lack the skill set to make the right choices in many situations. I know this to be true for Princess. She has told me that she doesn't like being mean or annoying but in the moment she doesn't know what else to do. That is why it is crucial for her to have someone who can run interference or set her up for success ahead of time. I believe by not allowing students who chronically misbehave whether it is due to emotional health or other factors beyond the child's control, to not fully participate in the curriculum ( field trips, recesses etc.), we are denying them a Free and Appropriate Education. If my daughter needs an aide for this to be accomplished, then get her one. To me this is not really different than a child needing an aide for toileting purposes. This is also akin to a child needing a wheelchair or a wheelchair ramp to be able to fully participate in the school day. 'Nough said!
End of rant.

Dining Out Drama

I remember when C was two and we went on a family vacation to Legoland. On the last day of our trip we decided to go to Ruby's for breakfast. C got so agitated by the noise and activity that she literally could not keep quiet. She threw what we then thought was a typical two year old tantrum. My husband and I spent our meal taking turns with C outside.

Then there was the time when Princess was 5 and we went out to eat with my MIL. Princess decided to crawl under the table numerous times but the best part was when she dunked her grandmother's roll in her coffee. Ever the gracious lady, my MIL, made the best of it but I was so embarrassed.

Over the years we learned that it was too stressful to take Princess out to eat at any sit down restaurant with wait service. We were relegated to fast food establishments or Princess's favorite, Soup Plantation, a serve yourself buffet style restaurant. 

This brings us to my husband's recent birthday dinner. My husband chose The Cheesecake Factory to dine at. I knew we would have to wait for a bit to be seated. I came fully prepared. I packed a back pack full of sticker books and an iPad to keep my daughter occupied while we waited. Since Princess gets really hungry and thirsty at a moment's notice, I even packed juice and a snack. Lucky for us we were seated in twenty minutes. Princess wanted to sit next to the birthday boy and so I obliged her. He helped her to choose what she wanted to eat. Shortly afterwards the lovely waitress took our order. Of course Princess wanted to chat it up with the lady. I tried to explain to her that the waitress had other tables to wait on but ever the gracious host, the waitress obliged Princess and talked with her a bit.

When our appetizers came, Princess took her turn and even waited for them to cool down. During this time my husband and I were trying to have a conversation. Typically Princess doesn't like it when she is not the center of attention and tries to thwart our efforts to carry on adult conversations. Not this time, our daughter kept herself entertained while we talked.

Pretty soon our meal came. Princess is a pretty picky eater so I didn't have high hopes but my husband and I told her that if she didn't eat a good meal she wouldn't get some cheesecake. Well she surprised us and ate a decent meal.

When we were done eating, we decided that the birthday boy should get his own slice of cheesecake while Princess and I shared one. In the past Princess hasn't done well with any form of sharing (toys, food etc.), but lately she has been doing much better in this area. I was still holding my breath when the cheesecake came because things can turn on a dime in our little world. Well someone else must have taken my daughter because she actually shared her cheesecake with me while her dad ate his own slice. She never even complained once about having to share with me.

What surprised me even more about this whole dining out experience, was that Princess acted like any other neurotypical  8 year old child would. She did not go under the table. She did not lie down when she was done eating. She ate her food nicely and was polite the whole time. We did not have to leave because of an embarrassing meltdown.

In the past this has not been the case at all. This goes to show that persistence pays off.
I think one of the keys for us has been that we are trying to sit as a family at the dining room table at least three times a week. This is where we practice our table manners instead of doing this in the restaurant.

Yea for mom, dad and Princess!

Here's the birthday boy with his number one fan!!