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.

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!

May 1 is Blogging Against Disablism Day: my two sense

I first learned about this from David. At Diary of a Goldfish here you can see the origins and the impressive list of bloggers participating. I highly recommend checking them out.

What exactly is Disablism? Quite simply, it’s discrimination against anyone with a disability. In the US it is referred to as Ableism, which sounds very euphemistic and in doing so down playing the harm that comes from this type of discrimination.

I have learned a great deal about disability discrimination from reading about Lisa’s, David’s, Emma’s and Kay’s, Autism Diva, and Amanda’s experiences. There are also many parents blogging about the discrimination their disabled children experience, notably Jacqui and Rob. *Addition made on May 1: Check out Lady Bracknell's entry for BADD - it's great. I am thankful for everyone sharing their experiences through their blogs and enlightening me. Until you have experience with something you can’t truly understand it. This is the nature of ignorance. Ignorance is defined as:

1. The state or fact of being ignorant; lack of knowledge, learning, information, etc.


2. The condition of being uneducated, unaware, or uniformed.

It is derived from the Latin: ignorantia which means to ignore.

Before all this happened with Elle I was very ignorant about disability issues and abuses. By living through this experience as well as reading these blogs I am less ignorant. I have written already about isms, especially disablism here.

There are many more posts about disability rights that you can find here. In fact, my second post ever was written about a subtle form of disablism I discovered in my struggles to wrestle a handicap placard out of the Registry of Motor vehicles.

For the most part I have been lucky enough to live as an able bodied person. I say lucky because I was born with severely clubbed feet and have had to deal with the repercussions of that all my life. I am lucky I wasn’t born a century earlier because I would not have walked. As such I spent a few weeks in a wheelchair and then had to relearn how to walk after one of the operations and had physical therapy for years after. I was 13 at the time of that major operation on both legs and feet, and though it was very painful, I was up on my feet again within a month or so. So I can’t really say that I understand Ellie not being able to walk. I do understand not always being to control my own feet and having to think about taking each step. Heel toe, heel toe, heel toe is the silent mantra that I think more loudly when I am tired. All that said it only held me back from not getting to take ballet lessons because my mother said I could never do well at that because of my feet. Lost dreams are hard.

When I had Ellie I became the mother of this beautiful person I loved more than life itself who also had multiple disabilities some of them are still showing up these days. And that is hard. But as such, I wanted to learn as much about the landscape that Ellie would be facing as possible so I could protect her. I still have a lot to learn but my mind is open. Opening the mind can be difficult at times as I detail here about my fears of having Ellie in an all special needs school.

To be totally honest my experience with people with disabilities before Ellie was very limited. The first one I remember was a girl in my gymnastic classes at the YMCA when I was 7. She was cross eyed, drooled, was overweight and used to steal people’s pocket money out of the lockers, or so it was said. She couldn’t speak well but would vocalize what sounded like grunts and groans and sometimes words I understood. In truth, I was a little repelled by her. She was a little older than me. I don’t remember ever speaking to her. But I remember her. I remembered her when Ellie was born and worried that Ellie would be like her.

Today looking back I see this girl differently. I know now that she had some hypotonia (the drooling is often a result of low tone in the facial muscles like when you go to the dentist and can’t feel your face so you might drool a bit – that’s a lack of muscle control), vision issues, and speech impairment. She had probably sustained some sort of brain injury just like Ellie. The fact that she was at the Y doing gymnastics, I see now, was a fantastic thing. She was out there in the world doing something she liked. I look back and feel bad that I was a little intimidated by her and a little afraid. I wonder if she really did steal from the lockers or did something go missing and she was blamed because she was the different one. The “out group member” is the psychological term I learned for this years later in my Ph.D. program. Out-group members are typically made into scapegoats when there is a need to blame someone by those in control = the in-group. I look back at her now and realize how great she was doing to be able to do any gymnastics at all and to be navigating the entire situation on her own. Maybe she had some good parents who wanted her to have a life where she too got to participate.

I wish that my parents could have told me what her differences were about? Not that they would know. But if I could have understood her struggles and triumphs more I think that would have helped me not be afraid of her. But no one ever said anything about her other than the stuff about the stealing. Missed opportunity. Maybe some tried to ignore her disabilities and act like she was not different. David talks about the effects of that here.

The other experience I had with disability after this was with my grandfather. In his old age he went blind. My grandfather looked like a much more handsome, silver haired, taller version of Ronald Reagan. He always had a smile and a great belly laugh. He taught me to waltz and the fox trot. He was an excellent, hands on, fun grandpa. When he lost is vision (after my grandma died) he lived with us for a few years until he moved to a nursing home. I was twelve. I did not think of him as disabled or blind. He was my grandpa who had gone blind but that was somehow different from him being a blind person to me at that time. I had no comprehension then of what he must have been dealing with – the loss his sight, his independence, the loss of his wife, the loss of his life. I knew he was unhappy, but I could not empathize like I can now. I felt bad he was suffering but could in no way relate.

I think of him when I hear David and Lisa sometimes refer to the able bodied as temporarily able bodied.

One of the main reasons I write this blog is to help other parents raising children like Ellie. I receive emails and comments showing me that it is also helping able-bodied people understand life with disability and it’s many faces. Before all of this happened with Ellie, my perspective was totally different. The values I had, what made me happy, and even what I could see. Seeing disability might just be a first step in starting to understand it. When I say seeing it I mean that sometimes you just don’t see it. An example of this is when I was pregnant with Ellie. I was in Los Angeles and could have sworn to never seeing another pregnant person there ever. But when I became pregnant, other pregnant women were everywhere. Funny how that works.

Ellie-Accessible: another venture out

Hello faithful readers. I am back. Was busy dealing with life and some actual work on my so called career. My book will be out in a few months and I was busy working on it to get it to the publisher (I’m actually not joking about that) and of course when it is done, I will let everyone and their brother know (also not joking- so get ready!).

This post is dedicated to the woman who will not be named (W3NBN) at Ellie’s old school (who has since left) who double talked me, acted like she didn’t understand me and then did her utmost best to ignore everything I told her about handicap accessible playgrounds. She thought it was just fine that there was nothing that Ellie could do at the playground at the old school which had no swings and no sandbox (the two things that Ellie might have been able to enjoy).

Clarification of terms for W3NBN
By handicap accessible, I mean easy (versus hard like over woodchips or other obstacles) wheelchair access to the ENTIRE THING! I also mean swings that comfortably support someone with gross motor issues. Throwing in some sensory integration classics like the incredibly complicated, hard to get, never before heard of Sandbox is also a very good idea.

Of course in my head I call all handicap accessible things Ellie-accessible.

In California, my friend Kate, yes that is the same guardian angel who donated a substantial amount of breast milk to Ellie who was her daughter’s NICU neighbor, told me about this charity that went around making playgrounds accessible to the disabled. All you had to do was call them up and tell them about a playground that needed to be converted. As a result there were a lot of Ellie-accessible playgrounds round Southern California. I don’t know of any such charity here.

Note to self: start such a charity once you have a couple of good solid nights of sleep.

Some things Ellie-accessible would not include are the dreaded, wheel jamming/dragging, bumpy, brain scrambling, migraine inducing wood chips. And I beg to differ, W3NBN, no amount of packing them down each year will make them any better at accommodating a wheelchair and it’s Hypotonic user who already has enough trouble holding her head up.

No – instead of the woodchips this recycled tire material is so much better. It’s flat, flat, flat and spongy. If a kid fell on it, it would do far less damage than even woodchips and certainly asphalt. It is soft and spongy and a wheelchair glides over it with ease. It seemed thin enough to handle the natural contours of the park as well. This stuff is on every part of this lovely and completely Ellie-accessible playground at, guess where, no other than New School. The wonder and following gratitude never cease for New School.

Pièce de Résistance

Yes, this was one of our latest outings, low key though it was. We took Ellie one Saturday morning to her school to check out the playgrounds. We heard they were Ellie-accessible and they were. What a wonderful thing. There were these tumbleform swings (like the one Ellie is in) that cushion and support Ellie so she feels safe, unjostled and can just enjoy the swing without having to try and keep herself upright and from bashing into metal chains at each side like on the baby swings. The smiles tell it all.

You can wheel right up it and around the whole thing. The slides seem a bit bigger than the ones at our neighborhood play ground and are padded on the sides. Dave had no trouble taking Ellie down them. So, if you are out there and in a position to make a difference from some kid who would like to climb the tower like all the other kids, here’s what it might look like.

Last but not least, I just have to say, don’t all little girls need a dada who will carry them around the playground, up and down slides, on seesaws, and everywhere they direct him to go? Ellie is so lucky!

Botox V. Spasticity: Round 2

I have the Botox Blues.

I have held off writing about this for a bit for a few reasons but the main one being that it’s painful for me to relive in the retelling how I am making Ellie's life uncomfortable. Cerebral Palsy is never so in your face as when you are fighting off the negative, debilitating effects of spasticity (increased tone). Spasticity, in all of it’s glory, is the brain’s inability to stop from constantly firing neurons at Ellie's ankles muscles and telling them to flex (though it could be worse some kids are spastic or have high tone all over). I describe it in depth in this post. Ellie's brain is constantly sending signals to her ankle muscles to flex and in doing so deforming the bones of her feet and legs as she grows. Hence the Botox treatments – a stopgap measure short of a painful surgery to get her on those twisted varus feet. The Botox acts like a block in the muscles to make them unresponsive to the neurons telling them to flex. In fact they call getting this treatment a “block”. Fun business all round, no?!

Three weeks ago we got Ellie her second round of Botox. I described the procedure and all the major players in round 1 here. I can’t stress enough the pain management aspect. Those needles are not small and must go deep into the muscles to deliver up to 2 cc’s of the Botox. I can’t tell you how hard it is to watch Ellie go through this. She feels the pain even with the Versed and the Emmla cream but doesn't care and doesn't remember 30 seconds afterward. The Versed, as advertised, leaves her smiling minutes after the procedure. This is followed by three sets of serial casts to stretch her feet into more neutral positions so that we can get her standing. I describe the casting here, here and here. Again my thanks to this man, Dr. Harry C. Webster, who is at New England Medical and is well worth seeing if any of my readers have children in need of a great orthopedic (technically he is a physiatrist). We waited six months to see him (it was well worth it) and then he expedited Ellie to the top of his list because she has the potential to walk. His goal is to get her walking and even running. He cares about the whole child and is dedicated to going many more extra miles than most people will ever go for the children he treats. I am thankful for his enthusiasm and positive thinking and for seeing and aiding Ellie's potential.


Ten days after the Botox she got her fist set of casts. This time she picked blue much to the cast technician’s surprise. He kept asking me what color she wanted and I kept telling him to let her pick and asked if he had swatches or packages that were color-coded. He did have color-coded packages and this is how Ellie picked blue. Sheesh! I took her by myself so there are no pictures to share. This week she got her second set of casts and next week she will get the third. Her knees hurt her after the casting today. She has trouble sleeping in them so we are very tired.

The good news is that after the casts came off her feet were less turned in and her skin was much better than it was the last time. The big push will be to get her standing so that gravity can help her hip development (her hips are slightly efaced and I don't want that to get worse) and help her build up the muscles in her legs to be able to support herself while standing. All this standing is going to have to be balanced with tummy time though because I am watchful of her spine twisting. New School let us borrow an AWESOME tummy time wedge. It has Velcro straps that help keep her in position and from rolling off. Ellie actually likes this wedge as long as I keep her entertained – fair enough! The reason I am so concerned with tummy time is because I believe that logic that goes like this: if someone can’t hold himself or herself up on their own in sitting or standing, if you force them to be in those positions, their spine will twist in the process. Have you seen pictures of people with CP who lean over to one side - well it's because they are being managed to sit at all costs - at the cost of a straight spine and at the cost of their crushed organs that get compressed in the bent over position. So it's a fine balance that I am watching like a hawk. If Ellie is too weak to stand and her spine starts to bend, more tummy time and less standing. That is the way it is. I have to patience and go at her pace - period. The trade off of a twisted spine is not worth it. I truly believe that she will get to the point where she is strong enough to maintain a seated position and even stand and walk. When that is depends upon her. She has come such a long way from her early days when she couldn't even roll over or hold up her head at all. The Scotson Technique has helped her the most in building up her strength by restoring her circulatory system via creating a stronger diaphram. It's slow going, all this healing of Ellie's brain, but very worth my time and patience. Don't ya think?! Look at that face! ;-) (The pic is of me and Ellie blogging last week before bed.)

I swear navigating the bodily pitfalls and trenches of cerebral palsy for my sweet Ellie is like walking a razor's edge. Luckily walking on razors was well covered in my "How You Too Can Walk On Hot Coals" class so I have decent technique. Just call me Maharishi Yogi Mama.

Trolls, Moles and Other Freaks

It’s been awhile since I have put my organizational psychologist hat and made some observations of this blogosphere I found in my petri dish. But it’s definitely time. I have learned so much over the past several months. Also, just for those of you wondering what the heck and organizational psychologist does, here are some things we don’t do, at least not professionally:

Organize closets
Organize files (this is never more true than at my house right now)
Care about the container store (professionally that is)

Organizational psychologists do:

Care about helping people have a better day at work – at least this one does
Look at groups and teams and environments as interconnected systems
Understand, to varying degrees, group dynamics and human psychology especially related to group behavior

Just wanted to get that off my chest. So no, I can’t organize your closet, but if you excel at that, please come to my house, we could really use your help.

Here are my latest observations of the blogosphere:

Trolls. When I was a little girl I read every fairytale book our local library offered. Does anyone remember the green, red, pink, blue fairly tale books? This is where I first learned about the concept of Trolls. They usually lurked under bridges and harassed unsuspecting travelers with fear and threat of pain and worse. They were usually pretty scary but always had one huge weakness – they are stupid as rocks. So if you encountered one, if you kept your head about you, you could usually outsmart them and escape their smelly ugly presence.

Imagine my surprise to find out, in my 30’s, that trolls really do exist, at least in the blogosphere. You can read all about them here and see a comparative visual of under bridge troll to a cyber troll here. I even had a troll visit Ryn Tales, which is why I had to turn comment moderation on. You can thank the delay in seeing your comments posted to Ryan Wells, my favorite troll supposedly from Herndon VA. Ryan was kind enough to go trolling around David’s site and generally try to take a swipe at anyone who came within his myopic vision. Like I said trolls are dumb. Just the same they can be a nusience. So if you have one at your site, manage it because it can get out of hand. The presense of one managed to close down one of my favorite sites. Sigh. Seems that in the blogosphere human nature is in charicature mode and people don’t hesitate to do things under the cover of anyonymity that they would hesitate to do face to face. Did I mention trolls are really the epitemoy of cyber bullys and on top of being dumb they are cowards as well?

Moles. There are even moles in the blogosphere. I hope not as many as in my garden. The moles in my garden eat all the bulbs or at least nibble on them causing no flowers to grow. Moles in the blogosphere do something similar. They comment as if they were someone else so that they can stir the pot and get everyone upset. Isn’t that unbelievable?! But sadly it’s true. Some people have way, way too much time on their hands.

Also, to all the trolls and moles out there, here’s something you might be cognizant of, oh um, I mean something you should try to understand: Site Meter. There is no such thing as complete anonymity unless you can find a Tesla-like way to post without using a computer or cell phone. And if you can manage to do that you are probably not a troll or mole, due to your superior IQ.

Web Rings. There are groups of bloggers with natural affinities that find each other through linking. It’s akin to finding your people in life, people who have similar values, interests, and life circumstances. You find them, and they stick with you until these things change.

In the blogosphere I have found such affinities by exploring the links of bloggers I love. And guess what, they are linked to other bloggers of equal interest to me. These affinities are called weak ties are actually really strong ties in that they connect you to clusters of people, information and opportunities that you could not connect to otherwise. It’s the whole six degrees of separation thing. By linking and following links you connect to people that you would not readily run into in your day to day.

The power of weak ties allows small groups of people to effect large scale change. I am hoping that the weak ties provided by Ryn Tales and the other sites I connect to will effect the social change of easing societies’ collective fear of disability. By showing pictures of Ellie and telling her story l hope people several degrees separated from my reality will stumble across Ryn Tales on the linked skipping stones and maybe realize the important gifts that come with diversity.

A very cool webring has turned into a Yahoo Group especially for mom’s of children with CP thanks to Billie. You can find it here.

Disability Blog Carnival #12

The latest, From Where I'm Sitting, is up and it's great and you can check it out here. I don't remember how I stumbled onto the first one I ever read, but I did awhile back and submitted my post about getting Ellie a handicap placard. Since then I have been in two more, without submitting, which is such a compliment. Tokah's carnival being one of them. Thanks Tokah! You can read the first ever Disability Blog Carnival here.

I love these because they broaden my understanding of the issues. I want to understand these issues so I can help Ellie now and in the future and so I can amend my appalling ignorance of disability issues.

I will be hosting a Disability Blog Carnival here in May or June with the theme of "Family Life". Further information on that and the exact date will be forth coming.

It’s just Cerebral Palsy

It could be way, way worse. And here is how, but don’t expect a list of other disabilities.

What could be worse than having a disability like, say...... Cerebral Palsy?

Here are some things:

Being mean-spirited and spiteful

Being angry at your life and fate for most of your life and missing out on all the beauty.

To lack compassion and empathy for others

To be ruled by fear

To hate

To indulge in rage especially against another

Being a parent, who holds back their love from their child.

Constantly focusing on what’s lacking and not appreciating what is working

To be ignorant (and I don’t mean IQ).

To never be of service to another human being or animal that needs it, especially if you have been asked for help.

Ok – so there is a start to a list of things that would be way worse than having a disability or parenting a child with disability. It is a list of things I have seen in people and myself sometimes chronically and sometimes infrequently. Ellie has CP but does none of the things on this list.

Who is better off?

What do you care about for your child’s preschool?

Ellie’s teacher at New School asked me for some feedback about what I value in a preschool. She is collecting information on this to report back to the team and preschool administration. I love this for two reasons.

One, as a parent, it shows they care what I think and more importantly what I value.
Two, as an organizational psychologist, I know from experience, the fact that they are asking at all is a mark of excellence. In my field it’s called Kaizen or continuous improvement. A big part of creating any high performing organization is getting feedback from your constituents then measuring your organization against it and making changes. And you don’t just ask once, you keep asking, you keep looking for ways to always improve. I am very glad that Ellie is in such an organization. The great qualities of her school are apparent every time I go there. The happy faces and contentment of the staff create such an environment of well being one can’t help but thrive there.

The general information that Ellie’s teacher is looking for is what matters to parents most in a preschool placement. The specific questions I responded to are below.

1. What did you look for when you saw the physical layout of the classroom?

Cleanliness (old school was dusty – not a good thing for someone who spends so much time on the floor
Comfort – would there be comfortable place for Ellie to lay down and stretch out?
Accessibility – was there room for her wheelchair?
Safety – the less sharp edges the better, the less clutter the better, child safe
Brightness and natural light are really important for physical and emotional health
Overall aesthetics. Did it look like a nice, fun, lovely place to be. Why would I want my beautiful daughter, little ray of sunshine she is, to spend so much of her time in a place that did not look beautiful, colorful, fun, and happy?
Enough space. I didn’t want Ellie crammed in a small space.

Note: All these things are equally important and are not listed in order of importance. If any one of them had been off that would have been a red flag.

2. What did you look for when talking to staff or when observing staff interaction with your child?

Competence and demonstration of understanding in regards to cerebral palsy and multiple disabilities. Handling someone with hypotonia is a bit tricky. Communicating with someone with sensory integration, hearing and visual issues is difficult. I wanted to be sure that they knew how to do this. If they couldn’t Ellie would be stranded in a place where no one understood her and no one could communicate with her. This is what happened at her last school and there was no way I was going to put her in that situation again, alone, in a sea of activity that she had no control over. The staff at New School excel at communicating, bonding, and building relationships with Ellie. As I write this I am getting a bit choked up thinking about it. It was such a relief because before I met them all I wasn’t sure there would be a place for Ellie at all.

Enjoyment, joy, interest in the teachers’ and aids’ affect when it came to interacting with Ellie. I wanted to see the passion in them for working with children with disability. Happily for us, and especially Ellie, it is there in spades.

Respect and positive benefit of the doubt. I wanted Ellie to be respected for the full fledged human being she is. I also wanted them to believe us about all the things Ellie can do and give her the positive benefit of a doubt if Ellie did not demonstrate all that upon first blush. I wanted them to have positive assumptions about her current level of functioning and her future potential. The motto of the school is all we see is possibility. Which epitomizes their approach and attitude and culture. Check!

3. What did you want to know about the preschool curriculum?

I wanted to know that it was flexible. I wanted to know that they would allow Ellie to develop the things she can and not solely focus on the things she could not do. I wanted them to take an appreciative approach. The old school called any skills Ellie had “splinter skills” which they are. But they wrote them off and always looked at what she could not do. From my perspective that is the wrong approach. I rejoice in any and everything Ellie can do. We will manage the things she can’t do but use the things she loves and can do as the motivators and self esteem builders to bring her along. Anyone who focuses on all the things they are bad at all the time will never succeed in much because they are not valuing their strengths. It’s a common approach not to value our strengths in society as if we are all supposed to be good at everything. Luckily Ellie’s teacher and staff take a flexible approach and will work with Ellie where she is at. They also do not expect all the kids to keep pace with each other. This flexibility was really important to me so that Ellie could work at her own pace.

I wanted her to get socialization opportunities with appropriate peers. I wanted her to be in a class with other kids who are as sweet and gentle as she is. Her classmates fit the bill in all of these ways. They challenge her too, sometimes by pulling her pigtails and taking her toys. These are great ways for her to learn to share and deal with other people in the world. They give her hugs and kisses too. It’s a basic love fest most days. Soooo cute too – did I mention the cuteness factor is quite high?!

Work on her expressive communication in that Ellie would be comfortable enough to stretch and grow and brave expressing herself.

Develop important life skills like eating and potty training and dealing with every day situations like eating at a table and navigating social norms.

4. What were your top 5 concerns about your child going to preschool?

That’s an easy one - Ellie’s happiness. They asked Dave and I this the day we went to visit. I said I had one main concern - that Ellie be happy to come to school. That she not get exhausted and sad and shut down like she did at her old school. She’s only 4 and school should be fun. This was my main, number one, uber concern.

Other concerns were that her time be well spent because these early years are precious to us in terms of her brain healing from its injury.

5. Lastly, please share with us a positive experience you and your child had while in preschool:

OK - read my blog!
All experiences thus far, with New School, have been positive.

What do you think? In an ideal world what would you like for your child in preschool?

Lions and Rabbits and Turtles, oh my!

We did it! We braved a major tourist spot and made it out alive. We went to the New England Aquarium last weekend. The place was a mob scene and we worried that Ellie would be overwhelmed and shut down by the frenetic activity and noise of the crowds. I am happy to report that she did GREAT!

Ellie had been watching Signing Time Zoo Train . Her favorite part is the chapter about the aquarium and the song In the Water. So like any good concertgoers we played this video and that song, signing it to her, all the way there.

When we got there it was a zoo - no awkward pun intended. There were tons of people in line. Kids running around everywhere and a general happy din. Ellie and I waited for Dave to get the tickets. She insisted on my lap and we did her favorite signs, lobster and the crab that tickles her, about a million times. It was loud and Ellie was keeping a low profile and would not look away from me. When Dave finally got in, he carried her through the lobby, which was a major accomplishment considering it's cramped and awkward layout. After getting assaulted by random grockle traps in the guise of pushy photographers and navigating crossing lines of comers and goers we managed to muscle our way close enough to the big 5 story tank to see in.

It took a little time and some special encouragement for Ellie to work up the courage to look in the tank. She first explored the cement of the window casing and snuggled in Dada’s shirt but would not look in no matter how much we pointed and said and signed, "Ellie! Look at the fish!". Then a GIANT sea turtle came up to the window we were holed up in and put his face right up against the glass facing Ellie. We of course got very excited by this and Ellie finally looked up and smiled and then laughed and got excited too. There he was, this giant turtle facing Ellie, nudging at the glass right in front of her for a few minutes. It was amazing. She was delighted. I wondered if he could see her or if the glass was a mirror on the other side. Either way, he wanted to get her attention and maybe, like Lion did, had some message for her. I think turtle is definitely another one of Ellie’s special animal guides/symbols.

Like I said before, sometimes you just have to open yourself up to the mystery of it all. Because after her encounter with turtle she looked at everything. Rode in her kid kart without issue. She got to touch a starfish and see sea anemone, harbor seals, penguins and many other amazing animals. After an hour or two of this I think I was more exhausted by the crowds than she was. It was a great time and we will go again.

I was so proud of her. It seems she has really turned another corner. A year ago this experience would have sent her spiraling into a major shut down. But last Saturday, with help from turtle, all she did was enjoy it, explore it, and share her discoveries with mama and dada. I am so proud of my warrior princess!

Any thoughts on the symbolism of turtle anyone?

Tip: We got free discount passes from our local library. This required reserving them a week in advance and saved us a fortune.

Special Note for Uncle Rupert: Notice the fringe?! I finally cut Ellie's hair for the first time a week ago - just a little. It was getting in her eyes and no amount of elastics for the pigtails would keep it out of her face. So I very carefully cut a fringe. ;-)

Going slow to go fast

Did I mention that I LOVE Ellie's new school and every person in it? Ellie continues to thrive there. She had a breakthrough this week in that she, instead of freaking out/checking out, when confronted with a craft/paint situation she participated! She actually touched the paint. That made me so happy. She had become so averse to touching anything after being forced to touch things, hand over hand at her old school that her range of activities got very, very narrow. At New School, no one touched her hands at all but they played with her. The teacher had her own egg and Ellie had an egg. Kristin, New Teacher, made picture symbol cards and put Ellie in control. Her first try when Ellie showed signs of stress the activity was stopped in a gentle way. The pics here are of the second time two days' later. OK - so on the second day, Ellie broke through her aversion and actually touched the paint! MAJOR PROGRESS! Going slow to go fast really works!

The other pics are of Ellie swimming. Now that she is going to New School 5 mornings per week, every Monday she gets to go swimming in their big therapy pool. How cool is that?! Two of her classmates were in the pool and Ellie laughed when she saw them. Here you see her with Mike, her gym teacher. He is the most respectful guy and was being extremely careful and cautious with Ellie because he knew if she had a bad experience her first swim it would take months to come back from that. I am so amazed and in awe of all the staff there and how they respect each child totally. As you can see, Ellie really enjoyed her first swim.

Quest, animal spirit guides, the mystery of it all

When I was younger I was always looking for answers about my life. I was trying to figure out who I was, my mission here for this lifetime, the why of it all. It was fun and led me to all kinds of interesting discoveries in mysticism, history, psychology, and more. My mother used to say to me, “You are going to live your whole life before you are 10!” And then it would be 12, 14, and so on. I think she was half proud and half annoyed because all my different interests must of presented some degree of hassle on her part to help me explore them.

Now that I am Ellie’s mother, I have this same perspective about her experience of the mystery of her life. I think everyone can immerse himself or herself in a bit of mystery now and again and be better for it. I think all of us are wonderful sparks of god here to do something good if we would only let ourselves. Ellie is certainly doing tons of good each day by being this amazing beacon of love for me and her dada and everyone she meets. Everyone who meets her literally falls in love with her. That is just that and it’s a wonderful thing.

My gentle readers will remember that I am on The Quest to get my family more engaged in life as we have been in hibernation for the last four years. Also, Dave and I have always had the perspective that we must bring life to Ellie because she can’t go to it like other children who can walk to whatever catches their interest. Ellie spent so much time in her first couple of years here in hospitals and very sick from her brain injury that she missed out on a lot of experiences. So this weekend on Saturday we took Ellie to the local zoo. It was her first trip ever to the zoo and we had been preparing all this cold winter via Signing Time Zoo Train. It’s a great video that goes over all the zoo animals complete with excellent tunes. It’s been Ellie’s current favorite for months. She knows all the animals and their signs, which was really handy for her first trip to the zoo.

Though it was a little on the chilly side (the green poncho came in handy) and the ground was a little bumpy in places for her chair we had a great time. She recognized zebra, gorilla, crocodile, and many more. She was delighted to look around and would get very excited when she spotted any animals, birds, or reptiles she recognized. There were some problems with rails and bars being at eye level so Dave took her up in his arms to get a better look, which is Ellie’s preferred mode of travel.

A funny thing happened when we got to the lion’s lair. We took Ellie up to the enclosure to view him. He was amazing. Dark burnt umber/black mane and burnt sienna brown coat. Just amazing and paying no heed to anyone as he soaked up the warm sun like any good cat. Ellie was delighted and just staring at him for several minutes. When she had her fill we turned around and began making our way down the curving path around his area. As we were about 100 feet on our way, Ellie in full on vocalizations because she had a lot to discuss with us about lion, all of the sudden we hear the most tremendous ROARRRRR! I have never heard a lion roar in person before. It sounded like he had an amplifier in his throat. It was the most resonant, deep, loud, amazing sound that stopped us in our tracks. When we turned to look at him, he was standing up looking directly at Ellie. The mama bear in me said a silent word of thanks for the 30-foot deep and wide chasm between lion and us. He then, continuing to look right at Ellie, ROARED his amazing deep, echoing, amplified roar in five short bursts. He was all business like. ROAR, ROAR, ROAR, ROAR, ROAR. And then he just stood there looking towards her and not moving. She was looking straight back at him staring intently. It was so strange that others there were looking at us wondering what we did to catch his attention.

Even lion is taken with my warrior princess. Needless to say it was a very cool experience. After several long moments he turned away and we went to the café to give Ellie her elevensees (her meal schedule is somewhat hobbit-like in nature in that it’s constant eating). We sat down and got snacks for ourselves and I fed Ellie through her g-tube. As I was doing this, she was on my lap, she asked for her magnadoodle. I pulled it out and she put her thumb on it, looked at me and said “uh!”. I looked at her and after a second realized what she wanted. So I asked her, “Do you want to spell the animals you saw at the zoo?” At this she threw out her arms and squealed. That is her emphatic “Yes!”. So I wrote down L.I.O.N. And then she put her thumb on each letter and as she did so I said the letter. At the end she wanted to do it again. She was very serious with minimal celebration in between. It was clear she wanted to spell all the animals she saw and remember them. She did this with each animal, spelling their name twice and then she would erase her magnadoodle and say “uh!” looking at me to go on to the next one. I was so proud of her. She was internalizing her day at the zoo. It was another great day out. I think Ellie really enjoyed the zoo and we will go back when it is a little warmer. Did we discover another one of Ellie’s animal spirit guides? So far we have leaping rabbit, lion, and Irish Guy. I think it is going to be a good year after all despite the fact that it has been a rough start with all the hospitalizations.

Next week the aquarium.

Faith in the changing nature of life

"Life is no straight and easy corridor along which we travel free and unhampered,
but a maze of passages,
through which we must seek our way,
lost and confused,
now and again checked in a blind alley.

But always, if we have faith,
a door will open for us,
not perhaps one that we ourselves would ever have thought of,
but one that will ultimately prove good for us."

A. J. Cronin

Hey, I made someone think!

David over at Growing Up With Disability nominated me for the Thinking Blogger Award. Thanks David, I am honored to be included in such an incredible group of bloggers. The rules are that I now have to nominate 5 other bloggers that make me think. This is going to be difficult because I would have nominated David and Gimp Parade, and Autism Diva, and others but have found that they have already been nominated which according to the rules makes them off limits. If you haven’t visited these amazing blogs you are missing out.

Luckily not all my favorites have been scooped up.
My nominations are:

A Letter To My Children. Lisa’s blog was the second one I ever read. She is such a clear thinker, solid writer and has the gift of being able to articulate all sides of an issue. Lisa I am sure you would make a great chess player for this reason. Lisa’s unique and sometimes harrowing story of her own battles in life and experiences raising her two beautiful twin boys is well worth reading about. Always interesting and always informative with a great sense of humor, a letter to my children is one of my absolute favorites.

Terrible Palsy. Jacqui thoughtfully and succinctly writes about her experiences raising Moo who has cerebral palsy. Jacqui has this uncanny ability to perfectly articulate my thoughts about many issues that we deal with in common except she does so much better than I ever could. I have learned so much from her example of how she mothers Moo and her other children. She is someone I truly admire. Her blog is an invaluable to me as well as humorous, poignant, and always thought provoking.

Special Education Law Blog. This blog has helped me to understand the lay of the land when it comes to dealing with the dynamics of special education. Charles Fox, a special education lawyer, a great writer and really cares about helping other parents of disabled kids fight the good fight to get their children equal access to high quality education. He is living it and passing on what he learns as he goes. His wife, Lori Miller Fox contributes many wonderfully funny posts as well. It’s a must read.

The Life and Times of Emma: Wheelchair Princess. I have learned a great deal from Emma’s wonderful posts as well has her many thoughtful and insightful comments on my blog and other blogs we both frequent. She offers a perspective that is near and dear to my heart and she has quickly and succinctly put into focus many sides of the issues I could not see. She has made me aware of things that allow me to be a better mother to Ellie. For that, I can’t ever thank her enough. I wish I had even half of her moxy and guts in my early twenties.

Fusion View. Yang-May Ooi is a writer, published author, lawyer and all round interesting person. Her blog is eclectic and always presents something new. She posts about writing and getting published, her travels and her technological discoveries related to blogging. I truly enjoy reading her blog as it gets me out of my own head and life and makes me remember to be creative.

To the bloggers I nominated, tag, you’re it. You now get to nominate 5 blogs that make you think. The rules for this meme are here. It was hard to only nominate 5 blogs. All the blogs listed on Ryn Tales make me think and I am grateful they are there. Check em out!

Another day out at the New England Horticultural Show

When you have a child who can’t walk, has the odd seizure, eats through a g-tube, takes meds every couple of hours, has auditory defensiveness, and is susceptible to colds that could land them in the hospital, you tend to stay in a bit more than if you had a child that had none of that. At least that has been my response to it. Especially when she was really little and hooked up to the feeding pump and constantly vomiting. Not a good recipe for nice outings.

But before you know it life changes and I am behind in my adaptation to it. This warm season I am on a quest to go out. I want all of us to be out in life more. I want to think more broadly in pursuit of all life has to offer – like I used to before any of this happened. I will need to bring Ellie’s wheelchair/Kid Kart Express to do this. I have been slow to use it outside our home or school. There are a number of reasons for this. One, it’s damn heavy. Two, we only recently purchased a car that it would fit in. Three, in the winter it’s cold. There is no protective back like a stroller. Ellie is literally open to all the elements though Ellie’s lovely teacher, Kristen let us borrow a fleece poncho that goes over the child and wheelchair alike. One of the bus drivers for the other kids in her class made a few to keep the kids warm in their wheelchairs. Does that just make you tear up or what? Small kindnesses always make me leak tears as well as the fact that I envy anyone handy with the sewing machine.

The last reason I have not brought her out in her chair much is that there is nothing that will immediately denote disability like special seating/wheelchairs. Sometimes I feel like I fake it a bit. I pass Ellie off as a nondisabled child. Usually only people who work in the disability community really get that she has issues. And they are great. They ask thoughtful respectful questions, help us with doors, and offer resources as well as communicate with Ellie well. I have no problem with all of that. I think most people looking at her in passing may or may not intuitively sense she is different but her cuteness usually wins them over and they ask, “How old, two?” Ah no, four. “Oh” puzzled expression runs across their face and back to oooing and aaaing the pigtails. Jacqui you are sooo not alone there. ;-) I mean let’s face it; the child has an amazing head of hair inherited from both sides.

Trying to “pass” has not been such a conscious thing. I have only realized it recently when relatives ask me why we don’t bring her out in her chair. Not bringing her out in her chair saves on questions and stares though people wonder why we use the handicap spaces to park. When Ellie is in her stroller people come up and oooooh and ahhh at her beauty and I get treated like any other mom. I worried if she were in her wheelchair if it would change this. Would people still oooo and aaa and tell her she was adorable or would they hold back? Also, some of my anonymity, which I find comforting and safe, disappears when we appear different. And for the H.H.’s out there – do not mistake these sentiments for shame but more avoidance of people’s ignorance.

There is a practical reason as well to start using her chair. Access. I have been frowned at and almost denied access to certain places because they don’t accept strollers. The Isabella Stewart Gardner Museum in Boston did that. They admitted us and then as we were walking around with Ellie in her stroller a guard stopped us and said you can’t use that stroller. (Would have been good of them to tell us this before taking our money.) We said, ah she can’t walk, she has cerebral palsy and is too heavy to carry. The young security guy said back to us, well we still can’t allow the stroller. I don’t think it dawned on him what I was saying. I think people just think I am lazy bringing Ellie round everywhere always in her stroller. Dave was disgusted and said, let’s leave. I said, no way. Then I upped the ante really quickly and said, so you are denying access to this museum to the disabled? My daughter is handicapped and should be able to see this museum like everyone else. I want to see your manager now. The poor guy turned a bit pale and radioed his manager straight away. There were a bunch of innocent museumgoers witnessing this whole thing. Dave was like, ah honey, it’s ok, let’s go; translation: my attempts to fade into the woodwork and fall through the floor have failed. The boss man came and after I explained the situation he back peddled furiously and said, of course it was ok to bring that stroller, his guard mistook it for another kind of stroller that is too big to fit into many of the narrow rooms.

It was then I decided that to museums and places it is not bumpy or boggy, like most indoor spaces, I would bring Ellie out in her chair. It wasn’t entirely fair to put the museum guards in a position to look like idiots. Not that we intended that at all. But the frowning disapproval of Ellie’s stroller happens whenever I bring her to the library and the bookstore and other small spaces like restaurants. The truth is, unless we are going on a trail or beach or somewhere where the road is bumpy like our street and the surrounding streets of our neighborhood, Ellie is more comfortable in her chair. It gives her loads of support and is sized perfectly for her. This is the most important reason of all to use it. So far we have taken Ellie out in it to a restaurant once. Dave and I actually got to eat sans squirmy four-year old in arms. We actually tasted our food versus rushing to finish so we could trade off holding Ellie and the other could eat a lukewarm meal.

This weekend last we took Ellie and her chair to the New England Horticultural Show. We were there for at least 3 hours and we had forgotten Ellie’s toy phone that we usually attach to her harness so we were very happily surprised when instead of whining the whole time and being bored to tears, Ellie loved it. And I mean LOVE. We wheeled her around the entire place checking out amazing indoor fairy tale landscapes. She learned about grasses, smelled flowers, looked through glades and laughed and giggled, and charmed all around her.

I did notice that no one came up to admire her pigtails, but that’s ok. She had a great time with us and I don’t think she noticed. There was also an artisan component to the show and as we were wheeling through it Ellie started laughing and squealing in delight. I took her in the direction she was looking and discovered a bunch of these unique whimsical bird houses that as it turned out double as homes for house ghosts according to Norwegian tradition. And whom doesn’t need a good house ghost? Especially since they are reported to protect old houses from faulty wiring and other potential problems and danger, quite perfect for our beloved ramshackle abode. As I brought her closer to the source of hilarity I asked her which one she liked best. It turned out to be this one. We have taken to calling it, via our dear friend Linda’s lead, “Irish guy”. It had to be the Irish one. Ellie was so impressed with him we knew he must be ours. Of course we took him home. Every time she sees him she cracks up and launches on a long babble which I am sure he understands perfectly. All of this makes him worth every penny. It was the last day of the show, which is a good day for purchases as all the vendors dreading having to schlep all their wares home drop their prices by 30 or more percent.

We also checked out a booth of imported bronze garden sculptures when this beautiful woman who was running it came up to Ellie and squatted to get lower and began to have a chat. She asked if Ellie liked rabbits. Dave translated and said, “Ellie, do you like the bunny’s who go squeak, squeak?” (Because that is what they do in one of her beloved books.) Ellie laughed and the woman produced this bronze leaping rabbit sculpture just for Ellie. She insisted on it being a gift. She spent a little more time connecting with Ellie. It’s odd being the guardian of another soul in this life. I have to step back sometimes and let that beloved soul connect with old friends who outwardly are strangers even if it means accepting gifts from them that on the surface feel a little like pity. The woman was so intent on connecting with her I put my discomfort aside and thanked her for the gift. It was also one of those rare moments when you sense that something special has happened that you don’t understand. I still don’t understand it but mysterious strangers giving gifts like a bronze leaping rabbit sculpture is a cool experience to have. Ellie seemed totally down with it, so who am I to judge? Ellie has this amazing presence and people with open hearts always respond to it. Maybe this woman was repaying that gift?

Anyone know what leaping rabbit means? It was an Asian store. In Native American Indian Medicine Rabbit symbolizes fear. Does a leaping one mean overcoming that fear? Are you thinking poor Dave at this point? You see how my mind wanders? It’s the philosophy background, I can’t help but wonder at the symbols in life as they appear. Any thoughts on that would be appreciated. I asked Ellie but she just laughed at me.

We all had a great time. I couldn’t believe what a great show attendee she was and I can’t help but attribute it to proper support, the added height her chair gives her, and me conquering my fears of people’s reactions to our differences.

Is a disabled life worth living?

There is a discussion going on in several preemie centric blogs about whether the preemies should be resuscitated or not. The question has been raised regarding whether or not there should be limits (legal limits) or a cut off in other words. Should it be routine medical protocol to NOT resuscitate babies born below 21, 22, or 23 weeks? In all of these discussions ultimately the question of outcomes comes up. There is an argument that if parents were more informed of the high probability their preemie was going to sustain major injury and become permanently disabled that they would make the decision not to resuscitate. Over at Neonatal doc here there is the most balanced discussion I have heard between the different camps.

As a parent of a disabled, former 27 weeker preemie I can tell you that no matter how informed I could have been I still would have fought for Ellie’s life. One mother in the comments on this post captured my thoughts on this perfectly. She said that she thought parents fought for their preemie child’s life not because they were thinking they wouldn’t be disabled but because they were fighting for their child period.

An ER doc brought up the point as well that I have not thought about previously that in attempts to let preemies die (she actually said kill them) the preemies don’t always die and are further injured. That was a startling revelation.

Injured – that is another important point to bring up in this discussion. Preemies are people who are injured at birth. As people who are injured they are treated and current laws protect and entitle them to this treatment.

I also support parent’s choice.

In my experience with Ellie, she was so severely injured at birth that even with the vent and all that her amazing Los Angeles NICU had to offer the docs were still not sure she would make it through her first night, day, week, etc.

Now, four plus years later, we are parenting that same child who has multiple disabilities. If you ask me what her quality of life is I would say good. Yes she is in pain sometimes. But she is so loved. She is curious about the world. She has tons and tons of moments of each day where she is obviously (as observed by her smiles, laughs, giggles, and nuzzles) happy and having fun. I think if you could ask her, and as yet we can’t, she might look at you in confusion. She knows no other life. Ellie, I would hazard to guess, is sleeves rolled up, deep into the business of living life.

Do I think the disabled life is worth living?

I think that life is a sacred gift (and I DO NOT mean that in a Pro-life way as I am absolutely Pro Choice). I mean it in a true biological and spiritual sense. If we are only biological creatures, here by a string of random causes, then life is a sacred and fleeting thing that ends when we end. Ashes to ashes, dust to dust. If we are a soul who inhabits this body and will go on to other life times and other bodies life is sacred. It is a gift from god to unfold and learn to be more loving and compassionate.

When I first read Kay’s header on Gimp Parade I was astounded. It opened up my mind. I have worried quite extensively about Ellie’s quality of life and the wisdom of having fought so hard for each of the 133 days we were in the NICU and every day thereafter for her to survive. I worry about what will happen to her when I die. Then I read Kay’s header and started reading her blog and the blogs of other disabled folks and across the board I found a zest for life.

Here is the quote from Susan Wendell Kay has in her header on her blog you can find here:

The Gimp Parade
Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, 'normal,' and sane....If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place. -- Susan Wendell, author of The Rejected Body: Feminist Philosophical Reflections on Disability

Would I have made different decision to save Ellie’s life in the NICU had I known she would sustain multiple disabilities? No. I asked Dave the same question and he gave me the same answer.

To do it over I would fight for her again just as hard. She has endured a great deal of suffering but who am I to say that it has not been worth it to her? If the soul theory it true, which is what I believe, then there is something very valuable that she has to learn from reincarnating into her situation this lifetime. The value to my own growth and development has been very clear to me since we left the NICU. Ellie and I were also very bonded before she was born. I even had a very clear premonition that she was going to have some sort of disability when we were one month pregnant. We were already knew each other when she was born. How could I not fight for her? I am so thankful she is here, even on the days when my back is killing me and I am exhausted. My life is more filled with love and I have become a better person from going through this experience.

That is our specific situation and my specific relationship with Ellie. As is obvious, there are as many differences in family situations as there are families.

I think that having a cut off is ethically a slippery slope. I can see both sides. I know that 21-weeker is facing many future and current medical hurdles. I also know that I would have been horrified if some doctor had said to me, “Well the cut off is 28 weeks and your baby is 2 days shy of that so by law we have to let her die.”

I think there is major UNDER reporting of the true outcomes of prematurity. Had I known the real statistics when Ellie was born it would only have better prepared me for our life together versus each disability being a new issue.

I think the inner growth and expanded capacity for joy that parents get from the experience of having things go differently than planned is missing from a lot of these discussions.

Do all parents feel the way I do about having a child with disability? I don’t think so. In our NICU we were in the minority of parents who were there every day. Some came intermittently others not at all. Would knowing the statistical outcomes of prematurity lead some parents to make different choices? It might.

Having accurate information out there regarding the risks and outcomes of prematurity is important to properly educate society. There were so many people who just wrote us off because they know a preemie down the street who is just fine. The miracle baby myth only dampens the willingness of society to support parents and caregivers of the disabled.

Parents of preemies need a lot of support. I would have loved it if, just once, when we had first moved to Boston, instead of frowns and stares from the crusty New Englanders at my baby, any one of them would have said, “Oh a feeding pump. She must have been born early. What a dear she is. How are you doing?” But all they could see is the pump and Ellie's misshapen head. We were frowned at and given dirty at the play ground because we were messing up people’s days with our presence and our 24/7 feeding pump.

This lack of support in terms of services and access to society is a BIG issue for the disabled and those who care for them. It is getting some play on the perifery of these discussions of resuscitations and in cases like Ashley Treatment and the 21-weeker recently sent home. I am glad the issue of cut offs has been raised in that sense. I do think it is a little off the mark in terms of what we really need to be talking about. There needs to be better representation of what it means to have a baby prematurely and the sequelae. The question needs to be answered regarding how can we help disabled children and adults become true members of society by providing access and promoting understanding of disability so that it is not looked on with fear as many disabled people are as mentioned in Jacqui’s latest post here.

I truly believe that a society without differences, without disability, is unrealistic. The real issue is society’s unwillingness to commit to embracing all of it’s members with respect, dignity and the intrinsic understanding that everyone has something to contribute, teach, give and learn to the betterment of humanity.

The abuse that many disabled people suffer is a perverse and primitive response to fear and ignorance fueled by this lack of understanding, inclusion and tolerance (as witnessed by the lack of access) of differences in our society.