Happy Father's Day Dave!

Dave, from the very start, has been a hands-on Dad. When I became pregnant with Ellie I did a bad thing. I took the stick test and then told Dave it was negative when it was actually positive. I did this because we were not married. Though we were in love, I wanted to know how he truly felt about it. I, in no way wanted to rope him in or anything like that. I had made up my mind from an early age that I only wanted a father for my future children who would be involved and just as in love with them as I knew I would be. So I did this bad thing and told him it was negative. The sudden drop of his face, the downcast of his eyes the hope that washed away in that moment was enough to tell me he had been just as excited about this as I was. And he was. Of course I told him right away it was positive. We took another test the next morning to be sure which incidentally was the morning we left for our dear friend’s wedding in Spain. Our journey into parenthood was off to an exciting start.

I couldn’t have picked a better father for my child or a better partner to be a parent with. To say Dave has been involved and is hands on is a huge understatement. He went to every prenatal visit with me. He was just as excited about every phase and stage of the pregnancy as I was. He looked after me like I was made of glass during that time. He solved problems and dealt with all of my hormonal swings. He found where the maternity clothes were. He found us a great doctor. At the time we became pregnant I was revising my dissertation and had started this rather big job at a big company and was a little overwhelmed. I was thrilled and connecting and talking with Ellie in my belly as well as being a little overwhelmed. Dave was there for me and Ellie. He moved into my little studio apartment and it was great. When we got a bigger place just before Ellie was born we were disappointed not to be able to hear the other person speaking because the place was so big. Two bedrooms after all is quite a switch from a one room studio. So we had to work harder to maintain our on going dialog. I miss that little apartment overlooking the marina with the boats that twinkled at night.

The stress of Ellie’s traumatic beginning did not put distance between us. Instead it brought us closer. Dave has a great deal of grace under pressure and is the most loving father and hardworking man for his family I have ever met. I am sure there are some who think I don’t deserve him – at times myself included.

Dave was right there beside me in the NICU – 100 percent present. We are a great team. There is nothing we cannot solve when we work together. And we have had our fair share of obstacles and trauma to deal with.

I think Ellie is the luckiest little girl I know. I always feel very proud that she has such a great father. She loves her Dada too. Loves! The scenario that has always epitomized my ideal parenting situation is that if children hurt themselves they would run to either parent. It wouldn’t matter which parent because they were just as close to both. I have lived to realize this dream. Ellie is equally close to each of us. However, as her biology dictates, she looks to us for different things.

To Dave she looks for praise and courage. She will do something great like show me a new word she can read and I will give her a lot of praise and she will smile, but then she will look to see what Dada thinks. She is clearly much more satisfied when Dada tells her she is beautiful. She will also try anything new for Dave. She is very brave when he is near. Most nights she wants both of us there when she goes to sleep but the last toss and turn ends her up snuggling into Dada. Seeing how much love they have for each other is a mother’s dream. We are the Three Musketeers. We are an unbeatable team. We each have our own special role.

To say that Dave is a great father, a hands-on involved father is an understatement. From the point we found out Ellie was on her way to us, he has given and continues to give his whole heart to her and to me: unabashedly, unashamedly, unconditionally with creativity and passion.

Happy Father’s Day Dave!

Picture Descriptions: From the top

1. A rare photo of Dave with a rare beard that I am sure he only grew because I asked him to when I was pregnant. I still love it on him. In this pic he is holding the collostrum from my first attempts to pump for Ellie.

2. Dave doing kangeroo care with Ellie in the NICU in November 2002

3. Giving Ellie her very first bath in the NICU, December 2002

4. Cradling Ellie after her resevoir surgery - January 2002

5. Taking notes on all sitting by the isolet in the NICU. We filled 4 sketchbooks altogether with notes on everything from tracking her day to day stats from rounds to observations to research questions for the doctors as well as a few sketches of her.

6. More kankeroo time November 2002. This was pretty amazing because Ellie opened her eyes and lifted her hand to touch Dave's chest. An incredibly touching moment for out baby who was not even supposed to be in the world until February of 2003.

7. Ellie in the growers and feeders row in her crib. Dave making faces with her in the mirror - as usual making the therapy seem like play for her.

8. Hanging out on the futon in December 2003 after we had moved to Boston. Dave stayed home with Ellie for a year and during that time got her to start signing and vocalizing.

9. First time finger painting in summer 2004

10. Ellie was the flower girl at our wedding on August 22, 2005 at Castle Durrow Ireland. Dave cleans up good, no?!

11. Dave and Ellie on Halloween 2006

12. Dave holding Ellie so she can see over the bars on her first trip to the zoo, May 2007

Knee Surgery Update: warning, this post was written under the influence

I am home, on Percocet with a funky self-filling ice pack on my heavily bandaged right knee. The surgery went well though when they got a look in my knee they found two miniscule tears on each side as well as damaged cartilage and a good bit of bone against bone. So they repaired the tears as well as performing a microfracture surgery to repair damaged cartilage. The microfractures they make with an AWL encourage the body to heal the newly broken bones and grow new cartilage. Lovely to know an awl came in handy for me poor knee (yikes!)

I was a little freaked out before the surgery because the last two I had one of which was the emergency c-section when Ellie was born were traumatic. But Doctor Micheli is a superstar who works on the knees of tons of famous athletes. He also operated on me when I was 13 to lengthen both Achilles tendons to correct my bilateral Equinovarus stuff. I have to say his bedside manner has improved. I was waiting, and quietly freaking out just a little, trying not to cry feeling a bit like Paris Hilton crying on her way back to the slammer somewhere between total fear and humiliation for showing it. But he came up and held my hand and said with a warm smile, “You ready! It’s going to be fine.” I did feel a little better. I can see he has worked on his bedside manner. When he operated on me when I was 13 at Children’s hospital Boston just before I went under he told me very seriously, “This is the most painful operation I perform. I just want you to know.” Er, Danielle and all other med students out there, for the record, I really could have lived without that comment. Though looking back I realize he was just trying to prepare me.

I obliged by proving him correct as I woke up screaming and proceeded to need a Morphine drip for an entire week. I was in the hospital for about a month after that or so. After that first week though, when the pain was not so excruciating I made friends with a couple of the six other kids in the ward and got good at using a wheel chair and then crutches. I remember having to learn to walk again and that being painful. I also remember meeting Donny and Marie Osmond. For those of you not familiar with them, they are the Mormon equivalent to Sonny and Cher. And I had grown up watching the Donny and Marie show. They were nice and signed my casts. I thought Marie was much prettier in person. As I write this I wonder if I will regret blogging while on Percocet. The next year at age 14 I took up bicycle racing and won the CT state road race and time trial as well as the local time trial series and even some criterion races. The operation the previous summer was a success and has carried me many miles until recently.

This time around I was once again in the steady hands of one of the best surgeons ever. So I know he did what he had too. However, the upshot of all that lovely MICROFRACTURING, I just want to say that over and over. Do you know they use a little ice pick type tool to do that – the Awl – yes I mentioned that earlier! Yikes. Anyway, MICROFRACTURE, microfracture, sorry it’s the Percocet. The upshot is that my expected recovery path of only needing crutches for 3 days and being able to bear weight, which come on, let’s face it, is a euphemism for carry my quadriplegic 28 pound daughter everywhere in two weeks has drastically changed. Now I can’t put more than 20 percent of my weight on that knee for 6 weeks. Meaning I will be on crutches unable to lift Ellie for 6 WEEKS! six weeks, weeks, weeks, weeeeeeeekkkkksssss. Did you hear the echo?

See what putting this off for seven years got me. Dave has been a super trooper running around like a "blue arsed fly" as he would say but hasn't said yet getting everything organized. I can only account for his positivity in the face of a long six weeks ahead to the fact the he is really cheered up by the various renditions of "I got you babe" I keep singing to him as he works his butt off.

Knee Surgery

Thanks to everyone for all their comments on Medical Ju-Jitsu as well as Ellie's floor scooter.

I am going in for a knee surgery today. Fun, fun. I should be home tonight and posting again by Monday. Maybe even posting more as I won't be able to get out in my garden much for a week or so. I have been putting this surgery off since 2000 when I injured my knee. First it was graduate school, then it was defending the dissertation, then I had this big job, then I was pregnant and then Ellie was born. There's never a good time is there?

Wish me luck.

Ellie Movin On Up

The video is of Ellie at "New School" in a floor sitter that was built at her amazing school out of tri-wall and attached to a motorized scooter. This was then operated by the switch you can see in her lap. Ellie had to continuously press the switch to make it go forward. This video is of the second attempt. It goes very slowly so not much sense of movement. But she did get the whole concept of press the switch and make it go. Go Ellie!

Eye Candy

Image descriptions: First two pictures are of Ellie holding Dada's hand as we visit the farmer's market last Saturday. Last two pictures are of the painting I am working on currently. The first painting I have attempted since leaving Western Massachusettes in 1995 and my life as an artist there for the brightlights and high ambitions of Los Angeles and graduate school. I think I might call the piece "The Changeling" and it is part of a suite I have in my head and just need to paint. These are some details of it. You can see the drawing and the beginnings of the underpainting. It's an oil painting on a 30" by 40" canvas. This is how I have been keeping my sanity and what I do when I am not playing Medical Ju-Jitsu.

Medical Ju-Jitsu!

Tap Dancing

Fire Walking

Western Cowboy dancing as bullets are fired at his feet

Tightrope Walking

Trapeze Swinging

Plate Spinning

Mind Boggling

Wrestling

What do all these things have in common? Just the mere fact that they describe the labyrinth we are in right now trying to figure out what is best to do for Ellie. I haven’t posted much because I am trying to get information from doctors and as such slave to my unending phone list that continues to shrink and grow like some big fat freakish cyber worm that thrives despite chunks being eaten out of it by little persistent mothers.

Here is the thing, Ellie has reflux. She has seizures. She has massive hypotonia with an overlay of spasticity in her ankles. She has a vision loss that has increased from 20/60 to 20/260 in two years. She has a mild hearing loss. She has strabismus in her eyes that has gotten much more out of control over the last six months. Over the last 3 months she has gained two pounds and 1.5 or more inches to weigh in at 28 pounds and measure at 38 and half inches tall.

She is in a growth explosion.

She is changing cognitively as well as you might have noticed from all our days out where instead of cowering in her stroller she is happily taking in her world in the sponge like way little kids do.

She is a joy – just don’t want you to forget that. My anxiety is high because I want to preserve her life. I want her to live a long time healthily and happily. I don't want any big disease monsters to swallow her up or rip her out of my arms.

But because of reflux and seizures and constipation (the first and last have everything to do with being Hypotonic which includes all the sphincters in her body) she is on a ton of meds. Cisipride, Zantac, Protonix, Myralax, Depakote. She has been on the first three for four years and on the Myralax for 2 and on the Depakote for sadly 1 year. That’s a lot for a little girl's liver to take. We recently got the vision report that told us that she had this HUGE vision loss. Though in going over it with her neurologist yesterday we decided that it wasn’t totally conclusive and have to get her a couple more tests to really know for sure (did you hear that?! My cyberphonelist worm just burped loudly!). That said the whole wandering eye thing is something that is noticeably obviously new and different.

Because of this we started to really research all the meds she is on and look for evidence of drug interactions. Or at least Dave did. He did because I freaked out about the vision loss and was in a panic over it and told him my gut was telling me it had something to do with the Cisipride. So Dave, with his awesome amazing brain that is 2 parts Sherlock Holms, one part Copernicus, and millions of parts amazing computer scientist internet savvy guy found this site that tells you about all the meds in depth including rare side effects.

Guess what we found? A rare side effect of Cisipride is seizures and vision change or loss. A rare side effect of the Depakote (that we are using to treat Ellie’s seizures) is vision loss. So here we are treating Ellie’s reflux with diet and meds. Happily giving her a medication that could be the cause of her seizures though it’s really hard to know and then in turn medicating her for seizures with a med that can negatively effect her vision.

Someone, anyone, please shoot me now.

I am not quick enough for all of this medical Ju-jitsu.

All along we have been adamant about NOT treating her reflux surgically (meaning getting her a fundoplication which I have written about before) because we were sure she would stop eating because it makes it hard to swallow at least according to many adults who have written about it on the Internet. Most of them also reported losing 10% or more body weight, which would be a horrible thing for my Skinny-Minnie girl. Though these days the ribs are not as noticeable (her cheeks have always been quite full despite low weight). How many 3 year olds do you know that weighed in at 22 pounds? Now at 4.5 years old she is whopping 28 pounder.

Ironically and sadly, last May, she stopped eating completely by mouth despite our best efforts.

Most nights she wakes up multiple times for hours at a time due to reflux. I think on the nights she doesn't wake up it's not because she is not refluxing but because she is so exhausted. The Gods of Sleep through the Night are actually the Gods of GERD. F&CK%R$!

What to do?

Here are some options:

1. Continue to treat the reflux with medications that are only minimally effective and will certainly one day in the not too distant future ruin her liver which would be fatal on top of having all kinds of other side effects including seizures and vision loss.

2. Take her off the Cisipride, Zantac, and Myralax and take our chances. Go see the “Witch Doctors” including acupuncturists, herbalists, naturopaths, homeopaths, and on and on to try to find alternative solutions for reflux or diet change even though she is already on a low acid diet that I have written about extensively. I still believe in this diet as she is gaining weight on it, has the most beautiful skin and hair I have ever seen and it has been vetted by a nutritionist who is open minded to not personally supporting Enfamil. She also is much less gassy and vomits less on it. But it's not perfect.

Also, no insult to said Witch Doctors. I have had quite a huge healing of my own tattered first two vertebrae because of Network Chiropractic – which I am huge believer in because it delivered me from years of chronic neck pain. But the problem is, no two WD’s say the same thing about Ellie. In my gut I know to explore with caution and I will. But it all takes time. If we take her off the reflux meds the big, her esophagus is going to disintegrate clock, starts ticking - LOUDLY like in Poe’s Tell Tale Heart (please somebody know that reference!).

3. Realize that her reflux will be here until stem cells can heal her brain which is probably several years away and get her the fundoplication surgery and get her off the meds. A good friend and uber nurse told me that she has seen more than one child stop eating when they develop cognitively enough to realize that when they eat they get painful acid in their throat and mouth – this could certainly be what happened with Ellie last May. And that when they get the fundo and no longer experience that pain, start eating and get rid of their G-tubes. All that said, I still know implicitly we did the right thing not getting Ellie the fundo with her G-tube when she was one month old corrected and under 4 pounds.

G-tubes and fundos are NOT necessitated as some doctors might lead their patients to believe. Also, for the doctor I heard tell this to a mother in the bed next to our, G-tubes are NOT like wearing a wrist watch. I think he needs to get one and see if that analogy still fits. Some Residents are such idiots!

Rant, rant.

But if you follow this link to the description to this surgery you will realize quite quickly why I am not a fan. It just seems so barbaric and awful and God I hate the choices before me for my warrior princess pigtail sporting cutie pie. It’s just not fair.

So there are our options. Sucks doesn’t it?!

Blog-o-rama

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!

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?

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

here.

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
David at 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.

In 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.

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?

Discombobulated

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.

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.

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: http://twitter.com/BarackObama


Best,

Twitter




How cool is that?

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.

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.

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.