Holidays Headaches

I have discovered that holidays aren't as much fun as a parent as it was when I was a kid. I know, duh, right? But really I think as a parent of kids with special needs, holidays pose a whole lot more problems than just the difference of having to cook and clean, etc.

Although my girls love having time off of school and love the excitement of a major holiday like for instance, Thanksgiving, which we just celebrated today, they don't really enjoy having major breaks in their normal routines, or having to visit other people's houses and to eat strange food and to deal with lots of commotion.

When the girls were little I was less concerned about breaking their routine. I'm not sure why that is. Perhaps because I hadn't connected their behaviors to their environment yet or something. At any rate, now, as I am seeing more and more improvement in their behavior due to the structures and routines, I am more anxious on days where the routine is completely thrown out the window.

Tonight I was at least able to maintain the bedtime routine and the girls were relatively calm because of it. There was no crying and fighting or anything like that. I guess that really is worth all the effort and the little sacrifices I have to make in order to maintain it.

Zones and schedules

It looks like all the work I put in to making the picture schedule and setting up chore "zones" for the girls is paying off. My token system is up and running again with the girls eager to earn points for jobs and good behavior. My house continues to look neater as every day I help the girls take care of their individual zone for the week. It is far from perfect but so, so much better than the chaos that reigned supreme the last six months since we moved.
What I love most about it is that I am not going nuts trying to be supermom. There is such a nice balance right now that I was even able to do a hobby of mine today! I better knock on wood or I fear this won't last :)

"Bright not broken"

I am reading the book "Bright Not Broken" by Diane Kennedy and Rebecca Banks with collaboration from Temple Grandin. I was drawn to this book because of what I'm dealing with Brittany. I feel that this book describes perfectly the dilemma we have with her.

In their book, the authors refer to children that are gifted and have a diagnosis for things like ADHD and Aspergers as twice-exceptional or 2e children. I feel that describes Brittany exactly. She is always amazing me with the caliber of things that she writes or draws or knows about. Yet she is constantly frustrating me with things like refusing to take showers, constantly getting distracted in the morning so that she misses the bus, bullying her sisters just because they annoy her and don't follow the rules like they should, and throws temper tantrums and slams doors.

I am curious to see how these authors propose that one deal with the paradox of either giftedness masking a disability or a disability masking giftedness so that I might be able to help find the balance for Brittany. Right now, at school, I am dealing with the first problem where the school doesn't feel an IEP is necessary due to the fact that Brittany's grade don't look too bad.
I have parent teacher conference tomorrow. Wish me luck. I hope it won't be as bad as I fear it will be.

The many medicine fights

I know there is a lot of debate about medicine and its use and overuse in some cases, etc, etc.  I have to say that, personally, I have had mostly positive experiences with medication since I began to take them for depression back in 2002 and have definitely had great success with the medication that has been prescribed to me since being diagnosed with fibromyalgia last year.  That being said, I do not view taking medicine lightly and have always, for myself, weighed the benefit against the risks.  In doing so, I feel that I have found come to a good point for myself at present.

I have found that my philosophy doesn't change in regards to medication and my children however as I have come to realize, finding the right fit and weighing the benefits and risks are much more complicated. 

Katherine has been my biggest challenge lately.  She is in a constant state of worry and anxiety.  On top of that she suffers from allergies.  I thought the allergies were a simple fix.  We were told to give her Zyrtec and do a regiment of washing her nose out.  She hated getting her nose washed out and it caused her to panic having water rush up her nose, so I just resigned to just giving her the Zyrtec syrup which she actually liked.  Unfortunately, it wasn't too long after beginning this medication, that she started coming into our room in the middle of the nights with nightmares.  Apparently, Zyrtec has a tendency to cause nightmares in small kids.  We tried to switch to Claritin but she doesn't like it and refuses to take it. 

For her anxiety, the neurologist has started us on a trial and error experiment to see which medicine will help Katherine.  The first was a patch that was supposed to stay on for seven days.  Well, Katherine ended up tearing it off (without me knowing), after the third or fourth day. But not before the teacher, who was not aware that she was on medication noted that Katherine was not her usual congenial self at school.  As soon as the patch was removed, she was back to "normal."  Fail.

So we tried the next thing.  A 1mg tablet of Intuniv that I crushed into some Nutella so she could take it.  That night she didn't just have a nightmare, she had a night terror, where she was screaming out in her sleep and wouldn't wake up for me.  And the following day around noon, I get a call from the school saying that Katherine couldn't stay awake in school and that she probably just needed to go home.  Fail. Again.

Next, the doctor had me try halving the dose and trying that over the weekend.  It happened to be Janet's birthday the next day and my husband had noticed that Katherine seemed so out of it during the party.  sigh.  fail.

I don't know what it is about this particular medication that the doctor likes but she is now wanting us to try an even smaller dosage in syrup form.  At this point, I am very hesitant about the whole thing since I haven't seen a positive response yet and only negative. 

The doctor that prescribed the Risperdal to Mary and Brittany had a philosophy that, with children, any side effect to medication is unacceptable.  I tend to agree.  At least when I'm taking this or that medicine, I am able to discern the differences in my body.  It is a much more difficult task when it comes to my girls.

With Mary, we were lucky.  Risperdal has worked wonders.  It has freed her from the fits that plague her and have allowed her to progress in her academic and social skills by leaps and bounds.  The only problem I have is when she refuses to take it.  The fits return causing more defiance and a deterioration of all that she had gained.  Luckily for us, there is an almost immediate rebound as soon as she starts taking it again.

I know that this is only one part of the puzzle.  I was never very good at science in school but I feel like I'm doing one of the most important experiments of my life with so much riding on the outcome that I really can't afford to get a bad grade on this one.  Heaven help me.

Advocating vs Overprotecting

Today, Brittany missed the bus, again. This has become such a frequent occurrence that, this time, I recieved a phone call from the guidance counselor at the middle school. She explained to me that three tardies equal on absence and students are only allowed five absences per semester. Anymore than that and technically, they should "fail" their classes. Brittany has 13 tardies and 5 absences already.
I tried to explain that I had foreseen this and had sought an IEP or 504 in order to prevent the level of stress and anxiety that is, I believe, the root of her slothfullness in the morning. I went on to give examples of stressors that I'm seeing like long term papers and projects that she just can't seem to get done. Or misunderstanding instructions or just making careless errors on math problems when she does know how to do the operation.
During the course of the conversation however I was asked if I always "come to her rescue." This has given me great pause because I don't view myself as shielding any of my children from the natural consequences of their choices. Granted it is easier with things like wearing a jacket in cold weather.
I view this as more complicated. We are not dealing with a normally functioning twelve year old girl. Heck! Twelve year old girls are messed up to begin with! You add Brittany's inability to tolerate change and injustice plus her lack of ability to put herself in other people's shoes and I'd say we'd be lucky to get anything productive out of her the next few years!
But the question remains. Do I let her continue to crash and burn and feel the full weight of the system bearing down on her or do I try to get modifications to the system put in place so that it lessens the stress on her and on those things beyond her control so that she'll have a better shot at actually succeeding? I am going to have to sleep on it.

Getting worn down

I made some progress with Mary making a picture schedule for her where she can take each task off and put it in a "done" box when she accomplished it. It took all day Saturday and a lot of lamenating pouches and velcro but I'm glad it is up and running.
I was once told that you could either spend your time setting up a good positive system before or spend it nagging and punishing and yelling afterwards. Both require about the same amount of energy. Ive done both and have seen the value and peace that prevails when I chose to do the former.
However, I'm really worn down from my struggles and it is so hard to put in energy at all. That would probably be my Fibromyalgia flaring up. It always does at inconvenient times.
I have to focus on the little victories. Mary used her schedule two days in a row. At least we are on the right track for that.