Frustration.

Just in case I was fooling myself into thinking that life was just happily rolling along...enter in ...
frus·tra·tion /frʌˈstreɪʃən/ Pronunciation Key - Show Spelled Pronunciation[fruh-strey-shuhn] –noun
1.
act of frustrating; state of being frustrated: the frustration of the president's efforts.
2.
an instance of being frustrated: to experience a series of frustrations before completing a project.
3.
something that frustrates, as an unresolved problem.
4.
a feeling of dissatisfaction, often accompanied by anxiety or depression, resulting from unfulfilled needs or unresolved problems.


Because it always seems to help to type some of my feelings out, and because I promised to keep this an honest account of our lives to look back on......I will share that the last two weeks have been loaded with frustrations for me. K. started off in Sept. doing awesome in school. Suddenly for some reason the month of October, she has fallen to pieces. With all of the wonderful improvements we are noticing in her and her behavior and sensitivities, it does not seem to be translating into success in school. She had an extremely anxious and panicky week last week. Patience I know. But I am the one that the teachers and counselors call. I am the one that argues with K. The last two weeks have been particularly bad. Incomplete assignments, disorganized notebooks.....she would have all B's if she just did what was expected of her. DO you know how frustrating that is? Then, add to it that C's teacher sees fit, while I encourage interaction from the teacher to tell me when things are going on, to call me and, well , basically whine, if he does meet every single one of her expectations every day. Organization is the bane of my exsistence. Add to it, that since I am TRYING to find more time for myself, J. is "helping" with homework more often. Well every time he helps, C's teacher is on the phone with me the following day telling me what is missing or wasn't done. He is working slowly again, but not as bad as it was when he was unmedicated. (which was increased last week and will not be increased again) I am trying so hard not to get frustrated, and not to get angry, but if I hear "I'm sorry I forgot", or "I am sorry we got mixed up","I saw it in his book but didn't think about it" one more time I may just scream. I am trying to find time to walk and take care of myself. But it seems I can not even rely on the other adult person in my house to help me. Everyone is so quick to tell me to just let the chips fall where they may, but when it comes to the kids and their success in school...I can't let that happen. Besides, I, me, only me, am the one that gets the call...has to explain that my husband was responsible the night before, and basically I am the one that the responsibility ultimately lies. I want to come up with reward systems for expected behavior. The teacher seemed less than thrilled. ARGH. And of course, there will probably be no follow through when I am not here at home.

I know that my problems are small compared to the ills of the world and other more severe problems that families face, but they are our issues that I deal with every day. So to us are as big as any others. No less frustrating. Some day hopefully, I will look back and read all of this, and smile at my concern, and say, "see it all worked out didn't it?" - that is my prayer. One reason I try so hard to make sure we make fun family days is that our daily routine is usually so fraught with tension and arguements about school, homework, constant redirection, and stress etc, that it feels like there is no fun on our days. Tonight is a fun night. K having friends from school over to have pizza and trick or treat. This is the first time ever, anyone but her two neighborhood friends, have been calling, or showing interest in hanging out with her. BIG step for us and for her. So what started out as two friends, has turned into 10. I am sure I will post pictures and tell the story tomorrow. Life is good. No matter what we deal with here, I know we are blessed with each other. Somtimes however, it is hard to remember.

I promised

I promised glowing pictures....here they are....C's spider










K's pirate ship - this was pretty cool.











And for my father in law and husband - YAY SOX! I tried to stay up and watch the game the other night - but baseball makes me sleepy. :::teeheee::::

Pumpkin Carving

Can I first just say - how totally wonderful are those pumpkin carving kits with the little saws?! Where were these when we were kids hacking away at our pupkins with kitchen knives, while I am sure our mothers prayed we didn't cut our fingers off? Plus it is so awesome to let the kid's do for themselves. Such a sense of accomplishment!

Last night we finally carved this year's pumpkins. It has been way too warm to even think about it, lest even that these things would rot to nothing in a day or two in the warm air. Finally chilled off enough to get them, and it IS the weekend before Halloween. Our dearest friends in the world have never had their girls carve out pumpkins, always painted them. The oldest is 11, so there is no way I was letting this year go by without letting these girls carve pumpkins. They had such a blast! Their youngest went at it with gusto!! Not afraid of the squishies or anything!
It has been a very stressful week here, and it was so nice just to have a nice dinner, and classic family time with such great friends. Finished off with a nice glass of wine, and a soak in the hot tub, and all is well again!



As K and C are getting older, their pumpkins are getting bigger! Our rule is you have to be able to carry it to get it. Made carving K's a bit challenging when it had three inches of flesh!
As you can see by the intense concentration on J's face and the tongue out, it required a lot of focus and muscle!


I am really so glad that this is one tradition that they seem to be taking longer to out grow. We look forward to it every year.

And even though I searched and searched the internet for pumpkin/fall/autumn related inspirational quotes ( did you know you can search for produce quotes on line!? yes sir-ree! I still marvel at the things I find in a google search) But alas, no wonderful awe inspiring wording to be found - so I leave you with a joke!

Q: What do you get when you divide the diameter of a jack-o-lantern by it's circumference?

A: Pumpkin "Pi"

PS I hate the lighting in my kitchen and really really need to learn how to play with some of the settings on my camera. I will post "glowing" photos of the pumpkins tomorrow.

One of the most beautiful

We went to the most beautiful wedding over the weekend. It was a second wedding. Outside in Lenape Park in Perkasie. The weather was just gorgeous. 70 deg in October, breezy and nice. These two are genuinely in love, faithful christians who have endured trials and trials to get to this point in their lives. The wedding was a perfect display of their love for each other and their faith in God. Now they will combine their families, to include 8 children!

It was so nice to sit and reminisce about our wedding, as well as marvel over how far we have come. Neither of us anticipated any of the things that have happened over the last 16 years. If nothing else it has all taught us to appreciate the here and now, enjoy what we have and be grateful for it. I think this is the first family shot in a long time that I just love. I had a hard time figuring out what to wear, consider the time of year vs the temperature and my weight. Frustrating.
LOVE these two.
This was a terrific old bridge at the wedding site. So cool. I actually also love this picture.
My guys. They melt my heart.
and need I say more?

Progress!

What on earth is that you say?

Well that would be the results of a QEEG - or Quantitative EEG - essentially you are getting a look into the electrical activity of K's brain. This was her repeat and compared to her intital test in Jan. I could launch into extensive descriptions of frequency and wave types, beta's and thetas etc.....all of which I am finding more and more fascinating, esp when the therapist shares some case studies with me. The problem solving scientist in me loves it!

Anyway I digress.....esstentially all you need to look at is the color. The one on the top......top two rows are Jan, bottom is August. Basically each little "circle" is a "map" of K's brain at a different frequency, and all of the EEG points. In short - red/orange is not good, green is good, and the shades in between are graduated....notice how much more green is on the bottom!?!?! YES! That is progress! The next picture is a different "view" - I laid the pages left to right. Left is Jan, right is August. See all the GREEN on the right!?!? The second row on the right is the most impressive. She basically was red all over, ALL OVER people, and now has a nice rim of green!! she noticed the butterfly shape right away.

Experimental therapy my @ss.

We were quite pleased and just does reinforce the behavior and social changes we have seen. Don't get me wrong, she does have a way to go but it is working. We quickly learned in January that many of her problems were way beyond typical ADD. We are noticing a decrease in her sensory problems, decrease in her anxiety(directly related to all of the "red" she had in her brain) - she is so much more socially accepted, her friends are calling, she is just so much more comfortable in her skin for lack of a better way to put it. School is coming along. She was actually complaining last night that she doesn't day dream anymore! Can you say more focused!?! The biggest issue right now is getting to be more confident with herself, and not to give up so easily. She has gotten into so many bad habits of not trying - if you tried for years and got no where wouldn't you give up too? Focus is still short but at least there, and she requires a lot less redirection. So we are well on our way!

I feel so blessed that we started this therapy. It has been costly. It has been time consuming. It has been stressful at times when K didn't want to do it. It was a HUGE leap of faith. But honestly if you told me standing on my head in a corner for the rest of my life would help her, I would have done it. When her meds didn't seem to be working even though we went higher and higher and she got thinner and thinner - there was just this nagging "voice" in my head last Dec that kept telling me to research, look farther, find another way. I did a websearch and just prayed I would see the answer. I researched and read, and researched and read. Neurobiofeedback just kept coming up, over and over. There it was. Our answer. Than to find a provider 30 min away(extremely rare where we live!) , and then finding out when we arrive he is one of the leading researchers/educators on the therapy and a Christain based therapy office to boot - divine intervention! My prayer now is somehow somewhat my nephew is able to get the same opportunity. I know it will work for him too.

Biofeedback

I am planning on a long update post on K's therapy next week after we get the results of her retest. ( I had a small peek the other day and the results were good. )But in the meantime, a friend shared this with me...and I wanted to "log" it here....this is the therapy we are pursuing with K. Guess you could say we are on the cutting edge,eh? The difference any of the literature fails to mention is this - studies 20 years out on patient's that have done the biofeedback show that the changes the biofeedback causes are permanent. Meaning - cure. Little if any regression. No pill will ever do that. Nor can any of these articles tell you that there is a large number of kids like K. who did not and never will benefit from the medication, and the only thing that told us that was the EEG......so I thank God every day he has set me on that path when he did. I can honestly tell you it has the best thing to happen to all of us in a long time. K is happier and healthier than she has ever been. She has a ways to go yet, but will well on her way.
~*~*~*
Hot Research

Researchers from Washington State Toxicology Laboratory reviewed the literature on Electroencephalogram (EEG) biofeedback, also known as neurofeedback, to assess its promise as an alternative treatment for patients with attention deficit/hyperactivity disorder (AD/HD). (EEG biofeedback therapy rewards scalp EEG frequencies that are associated with relaxed attention, and suppresses frequencies associated with under- or over-arousal.) This review reports that in large-scale clinical trials, the efficacy of EEG biofeedback for AD/HD is comparable to that of stimulant medications. Many different EEG biofeedback protocols for AD/HD are available. In particular, single-channel protocols developed by Lubar and inter-hemispheric protocols developed by the Othmers are widely practiced and supported by large-scale clinical studies.
Citation:Friel PN. EEG biofeedback in the treatment of attention deficit hyperactivity disorder. Alternative Medicine Review. 2007 Jun; 12 (2): pages 146-51. Pat.Friel@wsp.wa.gov


This is exactly the kind of research that we need to get the insurance companies and the doctors to FINALLY realize that this is a viable and payable treatment option for these kids. "Supported by large-scale clinical studies" and Blue Cross has the nerve to tell us they won't pay since they still consider the treatment "experimental". But they'll pay for her prescription for the 15 years!

Quick Hi

Just a quick hi! for family who has been coming here every day looking for new pictures! And the only one I have is this one...edit*which BLogger has decided not to post* ARGH....

Anywhooo...this will be short. I am still not typing well. Had a mole removed from the back of myhand about a month ago, and it came back "suspicious" so - the plastic surgeon had to go back in and literally take another hunk of my hand ....about 1 1/4 long and 1/2 or more wide, and probably about that deep. I felt scrapping and really did not want to know....then he pulled all that together into a nice little incision...can you say tight! Swollen. SORE! I poopoo'd the pain med prescription when they handed it to me. She said, you will want to have just in case. Well, yup. There I was sending J. out Sat to get it. Thankfully only needed it Sat and Sat night...I did not think it would hurt that much! But it was a constant throbbing, with sharp pain every time i tried to use it or move my wrist. Yesterday I could get my fingers together, just not exert any pressure on them, today I am actually squeezing a tiny bit. So progress is made! I tried to take a picture, but the steristrips are flesh colored and it didn't show up. I still can't twist it too much or make a fist, or pull up jeans and button them, so elastic it is!

Ok - it is telling me to stop, so I will. Pray that this sample come back clean, or they will need to take more. I don't have any more flesh on my hand!