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Wednesday, May 30, 2007


Hosting the Disability Carnival was great fun and introduced me to many new great blogs. There are also some blogs that I consistently lurk at but have yet to put on my blog roll. Well today I am finally getting around to updating the blog roll and giving shout outs to the newbies.

Here are some blogs soon to be on my roll that you might like:

Reimer Reason. Jodi writes well and often about her son Kellen and many other pertinent issues to parents raising children with disabilities. Jodi is brilliant.

Chewing the Fat. David is a paramount story teller and just nails a lot of the issues around accessibility and many others consistently.

Chocolachillie. It's a great blog written and about a lovely mother and her family. I can't say much more about it because I am still a bit choked up by recent events. So go there with a gentle heart.

Dream Mom. She inspires me daily with her painterly prose. She is ahead of me on a path I feel destined to follow. I am grateful to her for lighting the way.

Disability Studies at Temple University. GREAT resource here. It really is a blog that keeps it's finger on one of the many pulses of the disability world.

Lovely and Amazing. Such a positive outlook on life and boundless love for a beautiful child should never be overlooked.

Planet of the Blind. Another great site dealing with the issues of disability rights from a very personal perspective of it's authors. Great writing as well.

Pathway at UCLA Extension. Ok - everyone give a big cheer and send all the positive thoughts you can, because I want this project to thrive and grow and set the bar high for a future norm of providing college education in an accessible, flexible environment for anyone with a disability who wants one. Give them your support at their newborn blog!

The Perorations of Lady Bracknell. She's smart. She's witty. She nails it every time and she writes as if she lives in the 1800's which is a period of time in the writing world I am particulary fond of - so double bonus!

That's it for today. My plan is to update the blogroll in this manner quarterly. Enjoy!

Tuesday, May 29, 2007

So Many Beautiful Things

I am happy to report that Ellie seems to be fully recovered from her last seizure. Mama and Dada are trying to catch up with her. We have oxygen in the house now just in case and a suction machine I don't yet know how to use - more phone calls. I have almost made it through the first list of calls though more have been added. It's never ending actually but such is life. We, of course, over this long weekend have been out and about. Among other places we took Ellie to the DeCordova Museum. I love this museum and sculpture park. It has decent wheelchair access and features contemporary art. Their annual exhibit is on now.

Ellie especially liked their pink pig. She also really enjoyed the sculptures inside the museum as well as the paintings. She, in fact, paid special attention to many, many of the paintings. I had to take her slowly through several. I write this with pride because it was one of those moments when I thought, she's definitely my daughter. We are easing back into life as normal - which means no sleep. Clifford is getting evicted from the bedroom as he is way, way too much fun at 3am. My garden is coming along and surprising me with tenacious growth despite somewhat poor soil. Ellie is blossoming too.

This picture is of Dave and Ellie playing "The Great Outdoors" game that emerged from the Signing Time Video. Dave brings Ellie on a fast ride around the house over imaginary forests, streams and mountains with song blasting. She loves this. It's a great work out for Dada. The last pic is of her at home, in the boppy (but only for 10 minutes - Mary Ann!) playing with some toys. Do ya think she has enough? Where would we be without V-tech?

Thursday, May 24, 2007

Disability Blog Carnival #15: Family and Disability

Welcome to the latest Disability Blog Carnival. The theme is Family and Disability. Thanks to the many people who all submitted wonderful, interesting posts to illuminate this topic. If I did not include your post attribute it to pure human error. The topics below emerged out of reading the submissions. Thanks to Kay for the GREAT Blog Carnival image to the left. (Image description: Image is black and white. In it a one legged man stands on crutches on a beach looking out at the San Francisco Bridge next to a small child who is holding onto one of his crutches as one might do to a parents hand.) Enjoy!

Topic: Loss of Anonymity
This topic of anonymity is a BIG one for parents, like myself, of special needs kids as well as disabled adults and their families. As a parent you may be able to pass your beautiful baby off as normal (sometimes depending upon how many tubes they are attached to or how badly they were injured at birth) to others and even to yourself. I remember thinking when I was holding little infant baby Ellie, to enjoy this time because it would be the most “normal” it would ever get (total care is the norm for a 4 month old). And of course it wasn’t normal, but it could pass a little for normal and I clung to that for a while because the near, middle and far future were filled with scary possibilities and so many unknowns. I went from there to the point where I had to embrace the reality of disability publicly. In my experience, embracing it sooner than later is probably better for many reasons – the main one being you will be a better advocate and supporter of your child’s journey in a body that is not considered able and in a family that is considered different. I wrote this post about it that should have been titled “Coming Out at the New England Horticultural Show” because it was at that point I really decided to embrace “The Chair” and all that comes with it.

Jodi Reimer at
Reimer Reason describes this topic very well in her post Anonymity. Here is a quote, “Having a child with Down Syndrome means that your family will never again me anonymous. You will always kind of stand out in a crowd. I don't think it is necessarily a good or bad thing, it just is”.

David Hingsburger over at
Chewing the Fat is a great storyteller and this tale of an every day hero called Victory is an excellent account of the day-to-day battles people with disabilities face.

Lisa writes so many great posts on my topic this month that if you really want to know something about disability and family – just read her blog! She wrote this great post here about Defensive Parenting that she used for BADD. It’s a great post and a great topic as well as phrase – defensive parenting. For this blog carnival I also want to highlight this post titled, My double life about her experience of being happy and having to defend that happiness to those ignorant about disability. Here is a quote,
"But then there is the other life I lead, the defensive one. The public one. As much as I try to let the real me just shine on and become a public example of what is going on in our lives, I find it very difficult."
Lisa’s posts are long and thoughtful. She has a rare gift as a writer of being able to convey multiple angles of an issue. So get a cup of tea and then settle in as it is well worth the read.

Topic: Don’t speak for me
Astrid discusses families, independent living and the necessity of allowing for nonverbal people to have a voice in Thoughts on Support Attitudes and Disabled People Having a Voice. Here is a quote from this excellent post:
“Children and even adults with no functional communication skills are therefore presumed not to be able to have a voice of their own, so their parents speak for them. While I don’t expect all adults to go onto the mailing lists, it is quite different for a parent or carer to claim to speak for the person they’re caring for but actually to speak for themselves, than to adjust their communication to meet the person’s abilities and try to understand their wishes and claim to speak for themselves while having tried to best understand the person’s wants. It may take more effort from the supporter, but it enables the person to be a real person rather than a duty list - and I still hope parents and carers can appreciate that person.”

Autism Diva wrote a great post titled All’s well that ends oddly enough. In it there are many videos of autistic children, Autism Diva’s thoughts about them and therapies they are subjected to as well as cautions and concerns she has about caring for an Autistic child. I have been reading her blog for a about a year now. As a result, my whole view of Autism changed from not understanding and curious to understanding much more to the point of questioning if it isn’t just another manifestation of normal. See what you think.

In the first part of her
post for BADD, Laura discusses facing her school’s ignorance about Asperger Syndrome when she was 12. Here is a quote,
"Harassment won't make a child with Asperger syndrome understand social situations any more than beating a child with dyslexia will make them learn to read. It's not like it will reverse the brain damage.”

Stephen Kuusisto over at Planet for the Blind writes a very eloquent
book review of Reasonable People: a Memoir of Autism & Adoption, by Ralph James Savarese,
The Other Press. Here is quote from Stephen’s review:
"The sub-title of the book is as important to culture as the title itself: “On the meaning of family and the politics of neurological difference”. This timely book is about the Horatian life, “Life” written with a capital “L”. Accordingly it is about family and the life of the mind; about poetry and the fierce resistance to stereotypes of people with autism."
Ralph James Savarese also recently wrote a column in the LA Times titled, “You’re adopting who? A couple's decision to take in an autistic child draws callous reactions.?” that you can find

Topic: What it’s like
This topic includes accounts about what it is actually like living in some part of the disability world. The accounts are all well written and thoughtful pieces that will help those on the outside look in.

Funky Mango's Musings gives us some not so random drivel in They Deserve Better about the sadly lacking state of England’s services for critically ill children. Here is a quote:
“Barbara Gelb of the
Association of Children’s Hospices said:
'Children and their families are suffering as palliative care services across England cut back and close down. Even the emergency money given to English children’s hospices only covers a fifth of their running costs and runs out in 2009. We need urgent action now, with substantial new money in the forthcoming Comprehensive Spending Review.'"

Badger gives us this piece titled: An itch ... that is always scratched, yet never eased on what it feels like to have Tourrette Syndrome. Beautifully written and descriptive – I will never see Tourrette’s the same way again after reading this:
“The feeling creeps up my spine, across my shoulders, I can feel it and I wonder what will happen next. I am never sure. Sometimes it's just a twitch, others a huge squawking outburst.”

Badger follows this with a frustrating, but all too common, tale of an encounter with a new specialist who's condescending and ignorant in this post titled
NHS Ignorance.

Eminism reports on "Ashley treatment" (growth attenuation, etc.) symposium @ University of Washington, May 16, 2007. The other day my blood ran cold when I saw in my site meter that a person found my blog via this search “Ashley treatment in Dublin”. Was that a parent looking to inflict this on their child? I will never know. I wish I had kept blogging about it and against it despite Trolls. To me it’s pretty clear – it’s wrong. Please don’t do this to your child. The ethical battle is still raging and Eminism gives an accounting of both sides of the argument, albeit from her perspective, from her notes taken at the conference.

Topic: Demystifying and Diversifying the Meaning of Perfection
Funky Mango gives us this post titled Too good to be able bodied about Oscar Pistorius. A double amputee Olympic caliber runner. It seems that he is faster than non amputee runners and there is a feeling that, that is unfair. What do you think?

Sam at
Useless Tree writes a Taoist commentary on a recent New York Times article on Down Syndrome and Prenatal Testing in Human Diversity. Here is a quote:
"Calling the parents "evangelists" strikes me as unfair. The larger issue, however, is well captured here. It seems to me that, as a society, we are more concerned with "preventing" disability (which, of course, is impossible. Even if some sorts of disabilities were eliminated completely through abortion, there are plenty of others that occur later in life...) than we are celebrating human diversity.”
Right on Sam! Great post.

Topic: Get a Clue! Tips for Family and Friends
Growing up with Disability writes a post that should be handed out as a primer for all temporarily able bodied souls on how to treat someone with disability (except maybe for wiping their face with the diaper) titled Reflections on self-love, self-worth, and Family.

Wheelchair Dancer writes about her frustrations with her family’s inability to accept her disability in Disability and Family IV.

Terry writes
One more thing I love about my son detailing his acceptance of disability in their family. I love the whole premise of Terry’s blog titled I see invisible people: News, views and reviews of the people and places overlooked by the world at large. Great stuff.

Emma, Wheelchair Princess, gives us these recollections from growing up in this post titled, Family Relationships. I have learned so many things from Emma that I keep in my mental, remember this for Ellie file that I am forever grateful. Here is a quote,
“And then there were the times when I would throw a fit because I wouldn’t be allowed to do something Ben or Sophie were and I was the oldest and it just wasn’t fair!! I think the worst was when I was 13 and had to have it explained to me that CP was forever.”

Dave Hingsburger over at
Chewing the Fat gives us Loud Prayers where he shares an email from a woman who has received some very unsupportive and in fact devastating comments from friends and family since her daughter disabled Cicely has been in a medical crisis. This post could also go under the prejudice topic. But I kept it here because if you have ever thought that a family or the world would be better off without your friend’s disabled kid, or my disabled kid – get a clue and say a prayer for Cicely!

Lost Clown over at Angry For a Reason describes her battle in getting her parents acceptance of her disability in this post titled They just won’t accept it.

Stephen Kuusisto from
Planet of the Blind writes about his family’s reaction to his blindness in Of Xanadu and Kubla Khan. Here is a quote,
"I have written two memoirs that are respectively and in part concerned with the subject of my family and the matter of disability. If you have read those books you know that my mother and father were deeply divided about my blindness when I was a boy. They knew the "facts" concerning my disability but they had little or no emotional language that might enable our family to talk about the daily realities that accompany visual impairment."

Catherine at
Charming BB writes about her own unfoldment in dealing with her family in Hello Goodbye. Here is a quote,
“I am about 9 months into BB's bone and endocrine disease so things appear more "normalized". It is finally like those times when you can't really remember when things weren't exactly like they are today (like when you move to a new place and after 2 weeks of time you can't remember what eating dinner at the old place was like). I can't really remember not loading up BB's wheels and coordinating his high-powered medical care.”
Her blog has loads of great information and even templates for parents facing the special education system. I am happy to have discovered her blog via this carnival.

Adventures in Daily Living defines the difference between encouragement versus support while discussing her newly disabled father in Musings on Encouragement v. Support . It’s an excellent distinction she is making.

In the second part of this post,
A Rest From Putting Out Fires, Retired Waif describes how eager family members are for her to get a parking placard--more eager than she is, as it turns out.

Cancer Diva gives us her insights into how her cancer has effected her relationships and state of mind in
Care for a bottle of WHINE with that? Yes, please.

Topic: Impact of Prejudice
Kristina Chew
, PhD and mother of a child with autism at
Autism Vox gives us Race, Class and Autism. It’s a great post with many links to other research on how race effects the speed of diagnosis and support for children with autism including the impact on their families.

Amanda, gives us this excellent analysis about communication and processing time but also about the ways people try to put her in the box that is similar to themselves versus seeing her for who she is in “Give. Me. Time”. I especially love this post because she describes perfectly the things that happen to Ellie when people are not sensitive to her communication differences. Though Ellie is not autistic, her brain got wired up differently. She has what an able bodied person would consider a HUGE delay in response time. For her it’s a motor planning issue as well as visual and auditory processing differences. Amanda goes into many of the things that people have done to her that shut down communication versus promoting it.

Jacqui gives us her thoughts on her son Moo’s disability in Prejudice. Here is a quote,
"Cause as much as you see the prejudice staring at you on the faces of others - sometimes that same prejudice is staring back at you as your reflection in the mirror."

Paula Apodaca over at
E. is for Epilepsy describes the prejudice she has experienced in “Autonomy, Agency, Me & E”. Here is a quote,
“Social disintegration often takes place once E. has been disclosed. But it also takes place when someone witnesses our seizure activity and is “creeped out” by it. Suddenly, an individual loses status within her family, her workplace, and her community. Where once her actions were admired, they become scrutinized; though her decisions were trusted, they are now suspected. She loses responsibility for important and unimportant things.”

Joel from
NT’s Are Weird gives us this post titled Respect and Dialog in the Autism World. Joel's countering some incorrect, harmful and disrespectful stereotypes about autistic adults.

Lady Bracknell gives us In which we name and shame where she discusses what happens when you find evidence in your sitemeter that someone on the city council is looking for loopholes in the law... Here is a quote,
“At 12.09 pm today, someone was directed to my blog as a result of having run the following search term through Google:"When is it ok to not employ a disabled person?"See? I told you you'd love it. Ah, but wait. I haven't finished yet. It gets better.”

Topic: A Day in the life: Parenting
Billie details a slice of her life as a mother of the beautiful Miss Eden and Miss Holland in What did you do all day.

Jacqui gives us this poignant post about the lack of access for her son Moo who has cerebral palsy in Screw Holland. I just want to buy my kid a bike.

Slow What Movement? Dad from, Kintropy In Action: parenting up hill – both ways, gives us a run down of the nightly routine and the few moments of precious Me-time. It is a well-written poignant slice of life.

Lauredhel writes
Another one to the social crime list: parenting while disabled at Hoyden About Town. Here is a quote,
"I poked around the web a little. It returned few pages, mostly from the UK, talking about childcare assessments for parents with disabilities. Almost all of the equipment links I followed led to equipment for parents with sensory disabilities, like baby monitors for Deaf parents. I did find this one off-the-shelf wheelchair baby carrier. Just one.

It seems most parents are left to either try to adapt themselves to clunky, inaccessible equipment, or to get someone to custom-make items like
this accessible cot. (How many adapted items meet written national safety standards, I wonder?)"

Rob Rummel writes often and well about his beautiful daughter Schuyler. In this post Secrets he gives some good advice for new parents as well as offering up his own approach to being a dad. I think, probably a pretty great dad.
Topic: Hope for Ellie's Future
Yes, exactly – Why Not College?!
College programs for young adults with developmental disabilities are starting up all over the US and Pathways at UCLA Extension is the blog of one such program, just starting this week. There are many great links and other posts on this blog to watch.

That's it for this Blog Carnival. You can find information about future carnivals here.

Wednesday, May 23, 2007

Freedom to go where she likes...

If you can't walk or run or crawl maybe this is the next best thing if you are four.

I want a Wizzy Buggy for Ellie, and Eden, and Moo and all the kids who want to get where they want when they want and currently can't!

Thanks to Billie for discovering this wonderful, hopefully new trend in buggy making. The big question is when will the cost become something reasonable versus $4,000 current value? The second question is, when will they be available in the US?

Monday, May 21, 2007


It’d almost be comical…

… if the stakes weren’t so high.

Is it just me or is there always something when you have a kid? Ellie woke up with a pressure sore on the bony part of her left ankle today. I know if
Jacqui were writing this post she would tag it under her label “Parenting Skills, or lack thereof” which helps other parents feel like they are doing good job. And so this post goes, where I chart our ineptitude. I’m upset, pissed off and freaked out about it. Yikes! A pressure sore. Ellie has never had one. What I know about them is that once you have one that particular area of epidermis is forever weakened and prone to getting them again. I have read of quadriplegics having amputations because of unchecked ones. If there is on thing a parent of a kid with CP gets bragging rights about it’s that their kid never had one. So much for that.

And all of this because I didn’t listen to my inner voice last night telling me to remind Dada to take off her AFO’s. The OLD AFO’s because I am playing phone tag with her AFO guy’s secretary to get her NEW AFOs on top of the bazillion other calls I must make. Here is a partial list of those calls I must make today:

to pharmacy for new seizure meds and reflux meds,
to eye clinic to set up appointment to get Ellie fitted for her glasses,
to audiologist to keep hearing aid process moving forward,
to the program that will get Ellie’s diapers paid for,
to pediatrician for a letter of necessity to get a shower chair
to medical equip guy to order said chair
to neuro doc to regroup after the seizure,
to new neuro doc to try to get an appointment,
to GI doc about potential med interaction that may have caused the seizure,
to pediatrician to insist on getting oxygen and suction kit in the house
to hippotherapy place to get Ellie started
to Ellie’s medical equipment supplier for her enteral supplies
to insurance to get another emergency seizure kit
and on and on and on and on

Imagine you have to call your credit card company and navigate their automated phone system and wait at least 30 to 40 minutes to get a person then add more waiting time for calls back and more calls for when the nurse has to then check with the doctor and then call you back…

So if you are ever wondering how a mom of a special needs kids spends there time – there you go – a very partial list.

Is it me, or is this insane to the point of comical. Or am I losing it because her seizure has put me over the edge. Maybe the random crying is a clue. Ok – yes this is a whine and a rant.

So other parents out there, of special needs kids and able bodied ones, am I crazy, or is there always something?

Update: By the way, Ellie told me it was not an aowie and it does not seem to hurt her and had come down a bit, 7 hours later. Secondly, we just came back from picking up her new AFO's and our man there told us that because the skin was not broken it would be alright and and potentially be without further issue. Let's hope he is right.

Saturday, May 19, 2007

Breakthrough Seizures Do Happen...

...and they suck.

Tiffany and I are sitting down to potentially the last lunch we will have together for a long time as she is moving away. I hear a guttural sound on the monitor and I know something is wrong. It was a tiny sound that sent me running up to Ellie's room where she is having her nap.

She has thrown up on the bed. She is all wet. Tiffany comes up to see Ellie. She is one of Ellie's best friends as well as mine. Tiffany is an RN.

I get Ellie out of her wet shirt. She is very floppy. Not holding her head up at all. I think it is because she is so tired from being up between 2 and 6 am last night. I get her into a clean shirt, remove the soiled pillow, replace it with a new one and put Ellie down on it. She is silent.

For one split second she recognizes Tiffany who is one of her favorite people. A flicker of recognition passes on her face and she smiles a small smile. Then she looks at me. Her eyes dart to the left. The smile freezes. I say, "Ellie, say hello to your Tiffy!" She is looking at me. It looks like that should hurt her eyes to be that far to the left eventhough I am sitting to her left.

I pick her up and put her on my left knee because then she will have to look Right to see me. Her eyes don't move. Tiffany says, "She's having a seizure, put her on her side." I do and then we get the emergency diastate and give her a dose. She vomits. She is still seizing, floppy, eyes twitching and still deviated to the left. Then her breathing is choked sounding. I call 911 yelling back to Tiffany, "You know CPR, Right?!"

Tiffany rubs Ellie's back, listens to her heartbeat, counts her pulse and times her seizure. It's great being friends with a nurse - especially at times like this. I am trying not to cry. The tears are there in my eyes, hot and stinging.

The ambulance crew and fire team come just as the seizure stops and Ellie puts her thumb in her mouth and wants to go to sleep. A good sign. Post ictal - the brain reoranizing after the storm.

There's and ambulance and fire truck on our tiny street. They give her oxygen though her color is good. They take down the details. They pack us onto the ambulance and rush us to children's. Kerry the EMT gets the IV in - no small feat on Ellie's tattered preemie veins. Ellie is still out of it and satting at 85. More oxygen and quick conversation about giving her more diastat. Then her sats rise. She wasn't dusky but very ice white with bright red cheeks. I didn't know that satting at 85 could look like that.

The driver uses the siren on and off because I tell him about her auditory defensiveness. The closer we get to the hospital the more Ellie is coming out of it. I am there with her. They let me sit by her. I am telling her she is a brave girl and that she will get to rest soon. We get to Children's Hospital, Tiffany is there, dada is there. They do a scan. Her ventricles are fine - no surgery today for anxious surgical interns. Her depakane level is 72. 3 points less than it was a month ago - still in the therapeutic range.

7 hours and after telling 10 people our whole bloody history to current status we are home on a new med regime and Ellie wants her videos, food and to play with her toys. Mama wants to have a good long cry.

Thursday, May 17, 2007

Twitter This! - NOT just an American Thang

For those of you who have not noticed I have a Twitter account and you can read the moment to moment details (in under 100 characters) of my incredibly titillating and exciting life by checking out the box at the right of your screen (well whenever I update it).

Today, I was astounded to see that Barak Obama has a Twitter account. So, of course, I added him as a "friend". Below is the reply I got back via Twitter (a company cofounded by college drop out turned blogger turned writer turned major business mogul Biz Stone):

Hi Kathryn,

Barack Obama (BarackObama) added you as a friend!
Check out Barack Obama's profile here:



How cool is that?

Monday, May 14, 2007

Family days

We have been really enjoying our Saturdays in this bug less low humidity Spring. Spring lasts for just over a nanosecond in New England before the high heat, high humidity hits to suffocate all enthusiasm in humans. It has just the opposite effect on the bugs who multiply their numbers exponentially just to torture us poor bipeds all the more. Needless to say, not much time for blogging as we are trying to get in our outside time as much as possible. These pics were of our adventure to Look Out Farm two weeks ago.

Ellie especially liked the pig and she had her first train ride (and the train even had a wheelchair lift that the conductor was very excited to use). She loved seeing all the animals and I loved it that they were very well kept and healthy and friendly. They all came over to see Ellie and you could see them curtain twitching between their fences to see what all the fuss was about. A regular animal farm indeed. As you can see the orchards are very beautiful this Spring.

Friday, May 11, 2007

Happy Mother's Day and Who knew?!

Mother's Day was originated by Julie Ward Howe as peace movement. I found her words below here.

"We, the women of one country,

Will be too tender of those of another country

To allow our sons to be trained to injure theirs."

--Julia Ward Howe, 1870 Mother's Peace Day Proclamation

The brief history of Mother's Day below is from this site:

In the United States, Mother's Day was originally suggested by poet and social activist Julia Ward Howe. In 1870, after witnessing the carnage of the American Civil War and the start of the Franco-Prussian War, she wrote the original Mother's Day Proclamation calling upon the women of the world to unite for peace. This "Mother's Day Proclamation" would plant the seed for what would eventually become a national holiday.

After writing the proclamation, Howe had it translated into many languages and spent the next two years of her life distributing it and speaking to women leaders all over the world. In her book Reminiscences, Howe wrote, "Why do not the mothers of mankind interfere in these matters to prevent the waste of that human life of which they alone bear and know the cost?" She devoted much of the next two years to this cause, and began holding annual "Mother's Day" gatherings in Boston, Massachusetts and elsewhere.

In 1907, thirty-seven years after the proclamation was written, women's rights activist Anna Jarvis began campaigning for the establishment of a nationally observed Mother¹s Day holiday. And in 1914, four years after Howe's death, President Woodrow Wilson declared Mother's Day as a national holiday.

I wanted to wish all the amazing mother's I have met on this different path, Happy Mother's Day. Thank you all for the insights, hugs, laughs, stories, and the work you all do in your own way to make the world a more enlightened place for our litte ones who will need the world to understand them a little better.

Thursday, May 10, 2007

Disability Blog Carnival: latest and submissions

The latest carnival is up at The Gimp Parade. Check it out! Thanks to Kay for organizing this thought provoking and enlightening carnival on "Firsts".
This image on the back of the train cracked Ellie up. I wonder if it would do the same for Kay. It is some sort of wheelchair with no back. Hmmmmm.

Next carnival is here on May 24. Submission form is here. Deadline for submissions is May 22.

Spring meltdown

Today it will get up to 86 degrees Fahrenheit. That’s hot when you combine it with high humidity. We had about one week of lovely Spring between frigid cold Winter and Summer’s cauldron. These extremes are certainly reflective of my mood as well. We are still dealing with our Registry of Motor Vehicles in order to ensure not getting heavily taxed on the vehicle we had to buy to accommodate Ellie’s wheelchair. I wrote about this here. Ok – that was 11 months ago and the saga continues.

On top of all of this, Ellie is not sleeping much, er, at all and I am exhausted. I stress over the not sleeping. I go to bed each night cringing at the thought of having to get up and be coherent at 3am until 5am or 6am or 7am. During that time I have to lift Ellie up. She will want to sit on my lap, which for some reason at that hour really presses on my kidneys and hurts. Then she will want to play because she is so glad to see me. That part is really cute though I tell her, “Ellie, it’s not play time! It’s sleepy time. See how dark it is.”

Then I will try to figure out why she woke up which is really hard because she is non verbal and has her own 4 year old night time agenda. So I start by asking her, “Ellie do you have an aowie?” If she does (this is my translation of her actions from doing this countless times) her answer will be to throw her arms out to the side, swing her head back and forth, smile and squeal! It’s a massive, “Yes, I do! You got it right Mama! Nice Job!” Then I will ask her, “Ellie, where is your aowie?”

Sometimes she will tell me the specific place by putting her hands on it and then placing my hand on it – she does this when it’s her feet/braces/ or casts that I can do nothing about. If it is her AFO’s I will remove them. If she has just had a new cast I will get her Motrin.

Sometimes she will put her hand on the side of her mouth – her sign for yes. When this is the response I say, “How about mama kiss it better?” To this she smiles and gives me a gigantic nuzzle and then holds her face very still so I can kiss her cheek. This is the cutest thing ever even at 4am.

Often, however, her response to the do you have an aowie question is to put her hand just above her forehead where that bad shunt is. She does that a lot and it freaks me out. I stay calm and I say, “Do you have an aowie in your head?” And she will either squeal and do her yes or nuzzle me. Either way I kiss her on her head and then worry about this for the next week. She may be in pain. God knows what it feels like to have shunts. We did read that going from lying to sitting could be quite painful in a head rush sort of way. I hope one day she can tell me

If she looks ok I go on to the next part of the discovery process. Next I may ask her if she is not getting sleepy if she is hungry. Before when we would bring her down stairs when she was hungry she would always say yes to this, just to go downstairs. But now, when she is up at night we don’t reward her by bringing her downstairs so she can play with her toys. Even though this means running up and down stairs for food and pain meds. I also check if she needs a diaper change.

If it is hunger or a new diaper that is needed, once she gets food or changed she settles in somewhat quickly and will snuggle in for a sleep. More often then not however, she just wants me or is in pain. She wants to be in my lap. Even if I won’t play with her or sing to her, she just wants me there. Eventually she gets tired of sitting and will want to lie down. She will snuggle in and clutch a handful of my pajama top and hang on to it for dear life. Then she will proceed to toss and turn. Sometimes I can sneak out of her room and she will actually sleep better. But some nights when she has some unknown pain she will sleep lightly and not want me to leave at all. I don’t blame her. She has bad reflux and can’t sit up on her own. I think it must be scary to be alone, in the dark, and having trouble clearing secretions – so of course I stay.

But gosh I am tired and it makes the rest of the things you have to do all day seem more difficult. I don’t usually write about how hard this has all been. But I have to say, if you know a parent of a kid with brain damage, assume they don’t sleep very well, and if you are in the position to help them, then do help them. Offer to watch their child for an hour or two so they can go take a nap!

Tuesday, May 08, 2007

Hey Doc! Here’s what I think

Should doctors care what parents think?

As a parent my answer is a profound, “Yes! Of course.”

As a parent who has been managing more than her fair share of doctors on her daughter’s behalf I know the reality is that some do, some don’t, some do at times and not at others.

The really good doctors come to learn that the parents know a lot more about their kid than they ever will. I have this information from two great doctors who have been intimately involved in my life because they saved Ellie’s many times. I saw how they set the standard for parent doctor interaction on their teams (as they were both in leadership positions) and how they walked their talk. I also saw how the doctors they mentored also learned to listen to us and discuss with us versus tolerating our half of the conversation like some. These mentees internalized the value of listening to the parent. The two lead doctors set the stage. In my profession this would be the leader influencing and shaping their organization’s culture.

There is another doctor that has been excellent in treating Ellie who also listens to what I have to say. I know he really is listening because he looks at me when I speak. He doesn’t interrupt. He asks thoughtful and relevant questions based on what I said. We discuss Ellie's care in depth each visit so that we are both clear on the go forward plan of action. In this way talking to him is like to a peer. I am sure you have felt it when someone does not do these things and you don’t feel heard. By listening in these ways he shows me that he values the information I give him about Ellie. He is smart to realize that he can treat her better with this data. He has even admitted that he was wrong and I was right when we disagreed but he let me try some things with her that actually worked great for her when he thought they would not. I am not sure what his background is but I know he spends a fair amount of time treating children in third world countries on his own dime for nothing. I have never seen him in the $5,000 dollar suit and I know that he is well loved by everyone I have ever mentioned him to. He has somehow managed not to lose his down to earth sense of reality in becoming a doctor. He manages to connect with his patients and in doing so has become great.

Sometimes the issue of doctors NOT listening is one of elitism.

It goes way beyond the pure act of not listening to the parent, as it is a prejudice that is formed well before you ever meet them. It’s about superiority of intelligence, socio economic position and power. In our society we give doctors the halo. They are treated like gods. They are authorized by society a high status that bestows upon them instant credibility, superior intelligence, honesty and trustworthiness, and right thinking.

They are trained to have the ego of a god so that they might be able to say cut into the human heart and repair it and other such amazing things. You would need a lot of ego for that. What is lacking is a balance between the necessary self-efficacy to perform as a doctor and having respect for those of us outside their circle of demigods, which happens to include the patients and parents of patients. In my profession I would call this last group the customer or end user as well as major stakeholder.

From reading
Danielle’s blog I realize that doctors often see the worst of human nature and that may jade them forever (not that Danielle is jaded, in fact she is just the opposite – inspired and engaged and I love her blog). I also realize that doctors have the same human frailties and personality quirks as anyone else. The difference is that they wield power, as given to them by society, in exchange for their ability to help their patients survive. I think some of them may at times forget that they really don’t have a halo.

There is or at least was a movement in the medical world to help doctors see the other side of the patient’s life. Some friends of ours actually hosted a doctor in this program in their home so the doctor could really understand how the care of their patient looked in the home - in life outside the hospital. This seemed revolutionary to me and when the renovations are done in our home I want to be such a host.

I hope this trend toward developing the doctor’s ability to see the whole person versus the “knee” or the “fundo” continues. However, because doctors are fallible and only human like the rest of us – there will be those who get it and those who don’t.

As a parent I can help a doctor listen to me better by being informed and knowledgeable about my child’s issues. I can also be on time and prepared for doctor’s visits. I don’t want to contribute to the wait of another parent or patient. To prepare I usually review what happened in my last visit. I discuss with Dave questions we both have and write them down so I don't forget. I also bring things that are needed depending on the issue. I am not always perfect in this, but I strive to be prepared in this way before each visit. It is much easier to do this if Dave comes along to help with Ellie. I usually take a note pad to take notes so when the doctor is rapid firing suggestions for treatment and things I should do at home or in therapy I can capture them. When Ellie was born we started keeping a book of days on her every day. We would track her progress, meds given, weight gain, development, everything we saw. We stopped last year but have started again because with this book we can look back and say, ok this irregular eye movement started on this date which also coincided with this new med, etc. You get the point.

When I am on my own with Ellie it is very difficult to take notes but I try to just the same. Taking notes also alerts the doctor to the fact that I am paying attention and engaged in Ellie’s care and treatment. The point is that there are two responsible parties – the doctor and parent.

Today I heard that some of the doc bloggers do not want parents to participate in pediatric grand rounds. I think they don’t get it.

Friday, May 04, 2007

Different Points of View

Phone rings

Me: Hello

Caller: It’s Neuro Nurse from Neuro Doc’s office. I have the results of Ellie’s Depakane level. It’s at 75 which Neuro Doc is satisfied with as long as she is not having any symptoms.

Me: She is not having seizures but she refuses to eat.

NN: When did she stop eating?

Me: (thinking: ok this is the 3rd time I have reiterated these same details) She stopped eating shortly after she started the Depakane last May.

NN: Depakane is given to people who have weight gain issues.

Me: Yes, I know. Initially for the first two weeks Ellie at a little more than usual but after that then she refused to eat full stop. Are there any other seizure meds we can try or is there something natural I can give her to increase her appetite? I think the Depakane is taking away her appetite.

NN: Doesn’t she have a g-tube?

Me: Yes, but she used to eat all her pureed foods. She would eat 1.5 cups in 10 to 15 minutes. She even used to make a little mmm, mmm sound as she ate. She liked her food.

NN: (long silent pause) Why was the g-tube placed?

Me: When she was in the NICU because they wanted to send her home. I regret that decision because it masked neurological pressure symptoms later on and greatly increased her reflux.

NN: If she is keeping the food down and is symptom free we wouldn’t want to change the medication.

Me: She is not symptom free. She’s stopped eating. It’s a quality of life issue. She CAN eat but won’t at this point and all of that coincided with her taking Depakane. Her dysphasia is so much better at this point. She had a swallow study and was cleared from thin liquids. We don’t always want her to have a g-tube because I know she can eat. I know she used to enjoy eating.

NN: Well, sometimes Depakane can affect the palate. I will run this by Neuro Doc.

Me: Thanks.

Thursday, May 03, 2007

Disability Blog Carnival Coming to Ryn Tales

I am happy to be able to report that May 24th, 2007 is the date of the Disability Blog Carnival that I will be hosting. In keeping with my life, the theme of the carnival is "Disability and Family". I have my particular set of experiences with entering into the world of disability with Ellie. Those experiences include my own unfoldment, Ellie's unfoldment and development, how it has all weighed on my marriage, the reactions to our life circumstances by my family and friends, and on and on. All relevant, all quite impactful. I am leaving it at that.

Please interpret the theme however you like. Everyone is welcome to participate and all submissions will be considered. To learn more about the blog carnival you can go here. The Temple University site that the link takes you to is an excellent resource.

Looking forward to hearing what you have to say!