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Thursday, May 28, 2009


I think I am.

We had Ellie's Individual Education Plan (IEP) yesterday. I loved what was written. IEP's are very hard to get right in terms of balancing the laws of your state and the needs of the kid and having them make sense and be descriptive and succinct enough to be workable by many. This one was beautifully written with a genius that has written Ellie's IEP since she got to her current school. Each therapist as well contributes to this great foundation that was laid two years ago now. For that I am very grateful having witnessed a truly ridiculous and inappropriate, nonsensical that was produced by the public school. I know the difference from a good one that makes sense and is actually about Ellie versus one that is about everyone ideas about a kid with CP and brain damage who is NOT my Ellie. There is a big difference and her current IEP is brilliant in all aspects and especially in comparison. 

That said, I was also happy to make some specific additions. 

The additions I advocated for were made, sometimes right away, but many times only after I insisted several times like a broken record. That's fun feeling like you are being unreasonable when you know you are not but you are the only one willing to say what is unsaid by the group round the big conference table. Good times!

One addition I had to insist upon was the use of Intellikeys keyboard because we are using it at home. I feel I am still at odds with the school about Ellie using multiple modes to communicate.  Not once did the AT specialist use the word Intellikeys. I felt this was a sign of resistance and am not sure they will support the use of it by others. This really bothers me. This makes me think I need to check in and track it to make sure it is supported as much as the other modes this person prefers. I feel like my wishes for my daughter are not respected when I have to do this. I track conversations for a living and diagnose and intervene on group dynamics and leaders not towing the line for the team. I know what this looks like. It's a bummer to see it in this setting. In this case the person thinks they know best with a conviction that is unshakeable and unassuageable and isolated from dialog or external input.

Their argument is that Ellie's energy runs low at times and for those times she needs different ways to communicate. I get that, it's not a bad argument. My argument is that she has great use of her hands so let's optimize that and give her a chance to build up her stamina.  I have seen Ellie's eb and flow of energy. I get it, but I will not buy into limiting her because of it or using it as an excuse. Ellie LOVES to be busy doing different things. If she is mentally stimulated she will wake up for whatever it is. My argument is also around having the right physical set up for Ellie to succeed in. One of the therapists in the meeting noted that when Ellie had the right positioning her accuracy went from 30% to 70%. That is a big deal. They are tracking her accuracy so they should have the right set up right away. Everyone agrees on this in theory but it doesn't always happen. 

The jaded part comes in where I think I need to watch it closely. The part where I wanted things explicitly stated in the IEP. I hate being like that but after this year of struggle I feel like there is no safe place. Yes these people care about Ellie. But she is my responsibility for the rest of my life. That makes my concern far deeper and different from theirs. When they get defensive, I just feel suspicious. And that is jaded. Sigh. 

Maybe no parent can ever rest on their laurels (what are laurels anyway?). But sometimes it just seems like there a way too many plates spinning in the air for far too long. Way too many battles to fight and plans and 
strategies to implement and watch over. Ellie's worth it and then some. But still, I feel jaded and untrusting and that is not fun. I know I started out very trusting of life and with this feeling that people always do their best, because I do. 

Now I am jaded. 

What's next? Where do you come out on the other side? It's gotta be a place where wisdom resides - just not sure what it looks like yet, but looking forward to getting there...

Tuesday, May 26, 2009

Ellie's Second T-Ball game

There were no tears only excited happy dances and finger spelling the numbers of bases run.

Friday, May 15, 2009

Ellie's first T-Ball Game

Last Sunday we took Ellie to her first T-Ball game, which was on Mother's Day. And it was the best Mother's Day present ever!!

Thanks to M. S. and the others like her who make this possible.  Ellie's team is called the "Red Sox" go figure. The high schoolers you see wearing the "Buddy" shirts take the kids around. We got to varsity soft ballers who by the end of the hour had learned some sign language and showed Ellie how to throw the ball, bat off the T (hence T-ball - thank God right? was really worried about someone pitching the ball at Ellie and was very relieve that is NOT how it works), and running the bases. In some ways it was a difficult hour. Ellie was scared and everything was new. There were tears and protests. Dave and I were allowed to jet out onto the field to give her support and explain about the baseball diamond and count the bases. After 50 minutes and she hit the ball off the T she started to enjoy herself. She especially loved the fist tap with all the other players at the end.  After the game we all went to dinner and Ellie tried chocolate cake - that is what is on her lips in the last pic. 

I learned a lot that day. For one, Ellie did NOT like the hat. I wonder if she is a closet Yankees fan. Either way, I got her a pink Red Sox hat today and when I showed it to her she smiled. I also got her a pink and purple leather sparkly glove - which she seemed to like too. I also learned that there are ways to get out in the world if you look hard enough. Thanks to Holly for telling me about this. Isn't it always the other parents that you learn the most from? It has been that way for me since having Ellie. 

We are going to go every Sunday. I am so happy to get to have this experience. In some ways I often feel very isolated from life. Marie, the woman who runs it and conceived it and started it, has opened up the world for us in a way that is extraordinary. Thank God for people like her and everyone who helps her. We hope that Ellie will get more comfortable and that we can sit back and cheer her on with the other parents. Having never had that experience, I am looking forward to it!

Wednesday, May 06, 2009

Happy Mother's Day Everyone!

My beautiful friend Julie, also known as Queen of the Meadow, sent me this endearing, funny video with a heartfelt feminist twist to wish me a Happy Mother's Day.

Thanks Julie - coming from you that means a great deal because you are one of the best most ingenious, loving mom's I know! You made my day and you made me laugh which is always good for the soul.

Miss you!

I have to say I have been fortunate to have had chance to learn from some amazing moms. Thanks for all you have taught me and all the support you have given me Holly, April, Kate, Julie, Jacqui, Billie, Linda Scotson, and Sue and all the many mothers who chime in on  this blog. Thanks for keeping me honest and keeping it real.  Hope you all have a great Mother's day!

Friday, May 01, 2009

Crushing Worry

Some times being a mother just truly sucks. I feel so inadequate for the task today.  Ellie has been pale and tired since the Cranial Sacral weekend intensive. And in the afternoons her eyes are in a somewhat sunset position. Sunset position of the eyes can be a sign of pressure on the brain. Her head circumference has not changed, she is not vomiting and her eyes dilate fine...

Today if she is like that in the afternoon it's off to the doctor.

She has been perky in the mornings though not at her baseline. The CS people say she is working stuff out and that it's normal to be tired. Dave thinks it's neurotoxins that have leached out of her legs from the botox and into her brain. He swears this happens every time we do botox which she had two weeks ago but has not needed for one year...

I am really kind of done with all interventions at this point except I think The Scotson Technique which is so so so very gentle. Cranial Sacral as it turns out is NOT gentle. Botox is NOT gentle. I think all these things have caused Ellie's body some shock which is draining her further. 

We have not been doing the Advance therapy for over a year. It takes time each day and I have been working and we have been making strides on other fronts with Ellie. But I am going to start it up again. *I want to bring them here to Boston to show me the latest advances in that therapy which has helped, along with the nutritional stuff, Ellie the most out of anything I have tried. It is restorative versus aggressive. It seems to honor the child's body in a very gentle and congruent way. It is also the only thing that has not produced ANY bad side effects. Remember in earlier posts how I described all of children's medicine as choices between lesser evils? Well nothing has changed...

*If you are interested in coming to the sessions that we have with them email me. I am thinking that we will do it this summer. When I get a date I will post about it here.

I am overwhelmed and crushed under the weight of my choices for Ellie. Managing and safe guarding someone's precious and deserving and beautiful life is tough going. I feel that weight right now and can't help but feel I have been having missteps for a year. 

But here are some of my recent discoveries on the nutritional front that are a good evolution of my understanding of how Ellie's intake of nutrients can help her heal her brain - which is how I approach anything that goes into her body:

Coconut oil. This is a saturated oil - as it is solid at room temperature - it melts at 76 degrees. BUT recent studies have shown not all saturated fats are created equal. Coconut oil is a good fat: anti microbial, anti viral, antibiotic.  It has a lot of great stuff in it for the nervous system too. So I have replaced Ellie's daily dose of flax oil with pure, organic, UNHYDROGENATED, unheated coconut oil that I bought at Whole Foods.  She is doing great on it.  It is also very healing as a lotion for the skin and one of the purest things you can put on the skin. I have been using it as a night cream and it's awesome. Just make sure if you try it you get the organic unprocessed stuff that I highly doubt you will find at Walmart.

As it turns out almost all Flax Oil on the market has some degree of rancidity. Figures right? I had picked Flax because when Ellie was younger the fish oil seemed to make her reflux...  Ugh. Mama -0 / universal forces of darkness - 1

So now she is back on Fish Oil and it is going well - just 3cc's per day. You can buy fish oil that is "Pharmaceutical Grade" which means that all the mercury is processed out of it.

A big realization I am having is that a gentle approach is so critical to my little girl whose system is delicate. And when I say delicate I don't mean it's not strong. But think about it. Ellie has never eaten anything fried, processed sugar, caffeine other than in the NICU in the first two weeks of life. Her system is really sensitive and she is hypotonic inside and out at the moment. And she is small for her age - though I am proud to say she is now on the second line up from the bottom on the typical kid, NOT born three months early weighing 2.9 pounds, growth chart. When I lift her these days I have to go more slowly - her muscles have not caught up to her weight and neither have mine. Slow and easy and careful is how I am feeling these days. Having a kid with this much trauma and danger has had me on an adrenaline rush for years and I am depleted from that pace. I think the road now has to be a one about pacing. Which is a nice change. When someone is on the edge of death there is no time for slow and gentle - it's all fight and fight some more. We were there for a long time. Realizing we are not there now is a good thing as well as an adjustment. I always say to Ellie when I have to do something to her that she seems hesitant about - like brush the snarls out of her hair - "Gentle Mama" and make the sign for "touch gentle" and she relaxes. I need to remind myself to be gentle too on every front especially with my outlook on life and how to balance it all. I guess Spring is a time for transition and it takes an angry burst of energy to break through the frozen thresh hold to grow and evolve. That's where I feel I am at, at the point of changing once again. Change is hard.

In my next post I have to tell you about FPIES. Which are food sensitivities that show up somewhat like allergies and only a few doctors pay attention to.

Love and kind thoughts to all parents out there under the crushing weight of raising a child with multiple medical issues.  

Addendum: I picked her up as school today ready to go to the ER. But, though she is tired, and her eye lids slightly droopy, she did not infact have sunset eyes. Dave recalls clearly that every time after BOTOX that in roughly 10 days Ellie gets really tired like this. Maybe he is right that it is taxing on her and after that amount of time it leeches into her system. Great right. Dr. Webster always says the only risk of the botox is risk of no effect. I think he is wrong. None the less, taking her to the ER where they will put in an IV and subject her to radiation is something we will wait on. She was able to pay attention. She was signing the entire song "A You're Adorable" to me on the way home and in the absence of no other symptoms (though fatigue is one) I think I will keep a close eye on her and see. 

Feel like I am walking on the razors edge - again. Don't think I will EVER get used to it.