Weeeeeee!

Do you think she has fun at school?

Both pictures are of Ellie and L in a toboggan made by the adaptive equipment studio at Ellie's school. To call it the adaptive equipment studio however is like calling Willie Wonka's chocolate factory the candy store. Molly who runs the studio is very much like Willie Wonka in that she is a creative genius who is also an OT and I think she has a fine artist background too. Either way she and her band of expert craftspeople make all sorts of things so that the kids can experience things they wouldn't be able to otherwise. The seats of the toboggan are made of tri-wall cardboard and painted by volunteers. Amazing stuff!

High Tone

Ok - I have to ask my readers who have personal experience with this some questions that I feel might be totally invading your personal space about spasticity.

Apologies in advance.

But I am asking so I can help Ellie with hers. I need to understand. I worry about her experiencing pain. Because you see, increasingly her legs are getting tight. They are suddenly scissoring like mad and I feel it creeping up her legs to her waist. What to do?

So here are my questions:

What does high tone feel like? The real question is - does it hurt?
Followed by, what things have you found ease it, help it, relieve it in anyway? I understand where it comes from but I wonder if epson salt baths, arnica, or anything else that soothes tense muscles will help.

And for anyone who has had experience with AFOs, braces and the like, do your feet and legs with the high tone feel better in them or out of them?

Ok - there, I have asked. Any thoughts on this will be entirely welcome.

Prouder than proud

The first picture is of Ellie working hard on her standing and building up the strength in her legs ever since recovering from her October 30 PERC lengthening and posterior tibial recession. Here you can see her at her school in her knee immobilizers standing. Her awesome PT, Maryann, even let go for a few seconds and Ellie was able to balance upright, standing, on her own.
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Go Ellie!
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The second and third pictures are of Ellie in her Pony Gait Trainer. She goes in it everyday and more and more needs no coaxing to take steps on her own. Our floor is like the high seas so we always start her up at the top of the 5% grade so that her first steps pack a big wallop. She is really enjoying it.


I still need to order this and that should help her even more with staying upright. It's exciting to see how much she really loves to "walk". In the last picture you can see her making her way to the TV. she loves to see all around the TV and will ask us what various parts are. A gadget girl all the way.

I hope we are doing the right thing encouraging her. It's always a double edged sword. The surgery we did helped especially with the pointing downward of her toes and on the left side. But her right foot still toes in quite a bit. The good news is it seems like her feet are adjusting to her AFO's allowing her to wear them for longer stretches of time before we need to check her feet and let the redness die down. It makes me sad sometimes though that she wears those all day, a diaper all day, and bivalves on her legs and feet at night. Even so we are seeing her pulling her feet inward less and that has got to be some new wiring in the brain - which is good.

30th Disability Blog Carnival: What professionals need to know.

I got the idea for this carnival in thinking about the sensitivity and understanding or lack of both by medical professionals regarding what a patient’s life is really like. In my experience therapists, doctors, teachers, school psychologists who have shown true empathy, a willingness to listen, and respect for me and for Ellie have, sadly, been in the minority. I wish more professionals would try to educate themselves about the people they are trying to help.

So that is where I started. But as you will see there are many more places this sentiment extends, including fashionista sensibilities about wheelchair design. I have learned so much from the multifaceted diversity of thought in this carnival. Thanks to all contributors for making this carnival so insightful and well rounded!!! Enjoy!
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The next blog carnival is on 14th Feb with submissions due the Monday before. The topic/theme is "Superman". Please e-mail submissions to emma@wheelchairprincess.com or use the disability blog carnival submission form.
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Tokah kicks off this carnival with the post, People Are People First that is such a huge underlying theme in many of the posts that follow. Tokah you are so right. GREAT post.

Emma follows with this very explicit and wonderful post about carers who come to her home. It’s a great post because she goes into detail about what works and what doesn’t. Thanks Emma for this post. I wish every person who has ever come to our home and everyone who goes into anyone’s home as a carer or therapist could read it.

Cheryl gives us, What I’m Teaching Professionals. This is another great blog that relates to Emma’s experience so well. Here is an excerpt:

“My second thought? I would not want any of you working with my (fictitious) disabled child. In fact it scared me half to death to think that people being trained in the human services are left to go out into the real world with no real knowledge of disability whatsoever.”

Wheelchair Dancer gives us What Every Body Worker/PT Needs to Know. I agree with one of her commenter that this should be made into a poster or hand out and distributed widely.

Jodi Reimer discusses the power of a professionals words and attitudes in One Parent’s Perspective. This is another must read for professionals. Here is an excerpt:

“Because of your position and our vulnerability your words, and more importantly, your attitude, have the ability to ruin my day...or even change the course of my child's life.”

Ruth over at Wheelie Catholic takes us into a restaurant and offers up a very thoughtful detailed list of advice for waiters and waitresses in Dear Waiter/Waitress. I was stunned by her experience in the restaurant and if she had published the name of it, I would definitely boycott the place for life.

David, over at Growing Up With A Disability offers up two posts that fit this topic nicely. The first is an interview he did with Brian about Control. The second post is one I have remembered quite clearly since the first time I read it back in April. He quite clearly, much like Emma outlines the Top 10 Tips for Service Providers. It’s another excellent blog post on this topic.

Josh Winheld writes about his experience in dealing with a customer service representative at social security in Adding Insult to Injury. This is a great post that may make your blood boil on Josh’s behalf.

Tina Cohen, K.C.’s mom over at Autism Schmatism! writes something we can all learn from in, I Have Heard It All. Here is an excerpt:

“The old man said this, "where's his wheelchair!" Then "the mouth" I sometimes call him said, "you dummy, disabled doesn't always mean your legs!" I squeezed Big Brothers hand to let him know to shut it.”

Media Dis&Dat blog in Man Without Legs Photographs Staring Around the World reports on the adventures of Kevin Connolly and his experience with photographing over 32,000 people staring at him because of his differences. I also recommend the 20/20 interview of him found here. Connolly’s photos wordlessly mirror people’s attitudes in some ways, much better than words could convey.

Steve over at Planet of the Blind gives us Who’s Who? This post takes the perspectives and twists them on their ear for our benefit. Great post Steve! He also writes, Make It Strong Please. Here is a quote: “Blindness isn’t a calamity unless the "professionals" make it so.”

Ettina at Abnormaldiversity gives us this very insightful post about Counselors for Neuroatypical People. Here is an excerpt:

“There are two kinds of problematic counselours when it comes to me being autistic - those that think they know autism and those that don't know anything about autism. The first group is by far the worst.”

The next post is one of the best and most complete essays I have read on the topic of access. I will be book marking this and reiterating it in the future I have no doubt. NTs Are Weird discusses Who Benefits from Accommodation? “Something planners need to know: accessibility makes places better for everyone, not "just" for disabled people”

Lilwatchergirl clarifies the balance of power and so much more regarding her PT’s in What I Will Not Do OR to those who are there to make me 'better'

"Because I have choices and autonomy and a mind of my own"
--a great, fierce list of basic rules

Diary of a Goldfish writing for the BBC’s Ouch! Gives us The Deadly Sins of Wheelchair-pushers. Anyone in a position to push a manual chair should know and avoid these “deadly sins”.

Liz Henry gives us My Evil Mastermind Futuristic Wheelchair Golf Cart Thing. Just go read it! Great post Liz!

Elizabeth McClung over at Screw Bronze! has submitted this excellent post, “Fight? Or Resist?” about the language used around “fighting” a disease or disability. GREAT, great post. Here is an excerpt:
“…Lupus, CFS, MS, Parkinson’s, ALS, Huntington’s, CBD, Rett Syndrome, Lymes, Leigh’s Disease, MND’s, Friedreich's Ataxia, and those host of other diseases of which the idea “to fight” seems humiliatingly ludicrous…”

Jacqui at her new community blog, Equal Not Special, which I highly recommend you visit gives us her top 10 list of what professionals should know. Here is my favorite off this list:
“4. Just because you say that Moo won’t do things, doesn’t mean that he won’t. Doctors/health professionals can be wrong.”

Nick in “Where Have I Been?” shares his adventures in the virtual world of Second Life. He calls it “the next frontiere for disability culture!” All I can say is Wow and Who Knew? Made me want to go there right now and check it all out, except that I have to get this blog carnival out! Nick gives some great resources there from his experiences. So interesting! Thanks Nick.

Report From a Resident Alien gives us this thoughtful post titled, “Sometimes I Wish I Weren’t Autistic” about accepting her Autism. Here is a quote: “Autism's caused me trouble; but it's part of my life, part of my personality. Why not be proud of who I am? Why not, at the very least, accept it and work my life around it, rather than banging my head against it?”

Lastly, This Is How I Swim rounds out the carnival very directly with this post titled, What Professionals Should Know. Here is an excerpt:

“So if I could, I would tell all educational professionals that we have a responsibility to educate everyone who walks in our doors. In fact, that really needs to be said to pre-professionals and then repeated every year until retirement. The problem is that I could say that with words, but the institution of special ed, by it's very existence, tells them that I'm wrong. Bit of a sticky wicket. So what all professionals should know is that is that…”

..And check out this last, LATE entry over at Deaf Mom's blog. It's worth the read!!!

Bonded

Ellie is sleeping at the moment. She probably will be for another couple of hours until she wakes up hungry. Since she got off her antibiotics our hiatus of undisturbed nights has ended. I think too she is growing again which means she wakes up with a hearty appetite she could have only gotten from her father.

I just gave her one of her nightly meds. Very gently and quietly I worked as not to disturb her. All the same, despite my best, practiced-in-the-art-of-not-waking-baby mommy efforts, she knew I was there. She instinctively moved toward me - in her sleep.

It's like that when she sleeps. She knows I am there. I hope I am a good presence. I hope a kind one. It's weird though. At night when I have to give her meds I feel the connection. It's like a rope connecting us. It's tangible. I can feel her presence at the door of the room. It was like that when we would go to the NICU. Dave and I would comment on it. If we left for short periods of time to go get food, we could feel it at the security desk - her presence. Sometimes it was peaceful and often it was not when she was struggling in the early days fighting to stay here in this world. The bond between us is real and alive like a nerve ending exposed. It's sensitive to air and movement and thought. Like I said it's a weird bond and something that deeply connects Ellie to me and to Dave.

In this sense I experience her as hyper-conscious. It's like part of her is awake even when she is sleeping. It's like she has mama radar and can sense me when I am a room's width away. Very hard to explain. Are all little children like this or did she inherit my light sleeping tendencies? Because I remember being like that as a child - asleep but supremely aware of my room and the goings on in the house. In my case I experienced allot of fear. I hope that is not the case for Ellie.

Did this happen because we practiced the attachment parenting method? Does this bond account for the fact that I know what she wants most of the time though the ongoing conversation she and I have is never spoken using words?

What's undeniable is that her need for my love is real. At night when I have given her some food or just held her to settle her back to sleep, she will roll my way and reach her hand up to my neck or face and keep it there until she falls deep asleep. If I try to move away she will wake. I guess that is what it means to bond with and trust one's parent. Ellie is one kid who knows that her parents will be there. We have always been there from the first moment of her conception. And we are still there now, connected by invisible bonds that are stronger than steel and more sensitive than a neuron. Some days I mourn what happened to us all. But when I feel that bond I know that there is something much greater happening than what my mind thought was supposed to be. That bond is the main thing that makes the world around me real.

In Memory of Brent Martin and others

Wear a black arm band this week to mourn and protest the brutal murder of Brent Martin.

Thanks to Emma for making this ribbon.

Travelling, more experiences to consider

Emma has posted her experiences with the world transit system and it is worth the read. It links to the discussion I started here about Dave and Ellie and my most recent trip to Ireland.

Travelling should not have to be such a humiliating, dehumanizing experience just because a person has special needs or doesn't walk. It's amazing in Emma's story the assumptions people made about her. Emma, super smart web designer and writer and creative person, being treated as if she's not all in there just because she uses a wheelchair. That just kills me. I have heard David write about this too. How if he is with someone else while in his wheelchair people he has to deal with won't address him but the able bodied person instead.

I really think that anyone working in any role that deals with the public should be required to take diversity training and that training should include getting up to snuff on disability rights and disability diversity.

Everyone Must Do Tummy Time

From left to right: Diplodocus Ellie, Froggie, Warrior Princess Ellie, Maisy, and Tigger. You can see Ellie using her "weemote". That is actually what it is called.

Black Arm Bands for Brent Martin

David, over at Chewing the Fat, has alerted his readers to this hideous case of violence against a man with an intellectual disability. You can read the detailed story of what happened here. Needless to say, this greatly saddens me. Ellie has an intellectual disability as well as physical ones. I know the world is not a safe place. But being silent about violence like this is as good as condoning it. I for one will be wearing a black arm band next week.

Acts of violence against the disabled are not ok. I protest. I am angry about this. I want to alert as many people as I can.

Disability Blog Carnival is UP: Disability in the Media

The carnival is up here and it ROCKS! The theme is Disability in the Media. Great theme. Really jam packed awesome carnival with many thought provoking posts. Thanks to Connie Kuusisto for organizing this. Excellent Carnival Connie!!!!

The next blog carnival will be here at Ryn Tales on January 24th. The Theme is "what professionals should know about disability". Submission deadline is January 20th.

Mobility and Traveling with a Quadriplegic Child

This post has been a long time in coming and concerns all the things in its title. If you have been reading this blog for long you will know that Ellie is a bit of a world traveler. And when I write that I can hear us saying to her in the Aussie accent of her favorite toy – globee. “Ellie, YOU ARE A WAAAAAOOOORRRRRLLLLLDDD TTTTRRAAAAVVVVVVLLLLLLLLLLLAAAAAAAAAAAAAa!” Much to her delight. And in truth as a second generation American it took me until I was 21 to get to fly in a plane and nonetheless to Europe, on my own, from money I had saved up from many part time jobs. Ellie has been to Madrid, England, Ireland, California (she was born there) and many other places. Hardly a world traveler in a foreign news correspondent sense but she’s only just turned 5 - give her some time.

The truth is, this was the hardest trip ever. And we have used our Peg Perego stroller for the last time. It just won’t be viable by the time this summer when we go to England for her therapy at Advance. Her Kid Kart Express is too heavy and bulky and falls apart if you jostle it – so it’s not an option. I can’t imagine checking it on the plane and having it come back all in one piece. Also it would never fit in any European style car along with our cases.

We have also heard that if you bring a person on board in their wheelchair they are expected to stay in it the entire trip. God I hope that is not true as Ellie would need to stretch out after a short time sitting. If anyone in a wheelchair is reading this and has flow – please, I beg you, tell me how it works. Do you wheel on, get into your seat and then someone takes your chair? Do they leave it on the plane near you or do they check it below? What if you can’t ambulate, how do you go to the bathroom? Simple questions and I am so not joking because I need some perspective on how to transition from traveling with little baby Ellie to little long legged girl Ellie who will rapidly turn into teenage Ellie and so on if we are blessed.

One solution for to and fro airports is to get a portable stroller set up for someone with CP. Ellie’s classmate Lizzy has one and her mom brought her to Ellie’s party in it. It folds up to about the same size as the Peg Perego and is only ever so slightly heavier but offers a great deal more support. This is the stroller I am going to ask insurance for. We need it. As soon as I get the name of it I will post a picture of it in this post as well as the link to it.

Ellie’s Kid Kart Express, though it provides great support barely fits in our car and is HEAVY. I have to drop it about a foot each time getting it in and out of the car because it’s an issue of be gentle with the stroller or kill my back and my back wins every time – self preservation. This dropping it 12 inches each time takes it’s toll on it rather swiftly and I am forever tightening bolts and readjusting it.

Also traveling in the narrow confines of a plane are tough. Ellie wants to be on our lap and when the person puts their seat back there is no room, in fact it’s dangerous if they do it quick. We narrowly missed her getting clocked with a flying seat back. She will sit for a little bit in her own seat which we line with many pillows and both of us lean over to support her. And she is getting to be a much better sitter. It’s just that if the plane ever did lurch forward or experience any real jostling turbulence, Ellie would suffer like a rag doll being thrown this way and that. So we hover by her and hold her and basically are on egg shells the entire trip.

And you can’t let that guard down for one second. I did so as I was pushing her in her stroller out of the airport bathroom. As we were going by the stalls, a bathroom door stall flew open fast and I thought it hit her. She began to really cry hard. I have never felt like a worse mother. I thought it hit her in the head but there was no mark so I think it actually hit the side of the stroller. Just the same I was in tears before I realized it had probably not hit her but scared her. I felt all the breath leave me when this happened and got this sharp pain in my chest. Ellie getting hit in the head by anything even a feather is so not allowed in my realm of experience. Hasn’t she had enough head trauma for f$%&sake!

So I picked her up and carried her out of there. She was hysterically sobbing and I was trying to push the stupid Peg Perego at the same time with tears rolling down my own face and both of us were trembling. That really sucked as far as experiences go. I did think it was partly my fault however. Instant karma coming back to torment me in repayment of the fact that I gave a woman a dirty look who was using the handicap stall before us who was clearly not disabled.

Changing her in public toilets is a bit difficult as well. We usually just do it in disabled stall in the stroller itself by putting a pad down underneath her. But this obviously is not a long-term solution. Getting her walking or ambulating and potty trained are long-term solutions. We are working on the walking and its time to potty train her too. Again, I have no idea where to begin or what equipment to get. Any pointers on this will also be much appreciated. I do know she understands going potty so at least we have that to work with as a starting point. God, Ellie is going to kill me when she is older for writing any of this.

I realize that we are still caring for her in many ways as if she were a baby. It would not occur to me to sit her on the toilet since she does not do this at home. What is the transition? I probably should have potty trained her already but just and a lazy sloth of a mother. I really have no idea if we are doing any of this right. Where there are lots of rules for kids who can sit and walk and talk there are none for one that doesn’t do any of these things.

It just seems like going into the world transport system is dangerous for someone who can’t readily jump out of the way of all that surging humanity. Does this mean we just road trip it everywhere? Can’t drive to England though and I don’t fancy being on a boat with limited meds and food for her for any amount of time.

Dave and I love to travel. And Ellie did enjoy looking out the airplane window (this is the first time she has ever done that one – and very exciting for us to see). And I know she loves seeing her relatives and visiting beautiful places of the world and getting to be with Dave and me 24/7.

I really need to know with all these limitations and concerns, how do I keep the world from closing in on us?

The politics of gender

The politics of gender are a huge force in this election. The force that is putting Hillary most in the spotlight or petri dish of scrutiny. And that is a sad thing.

Here is an article that sums up a great deal of what is going on very well.

http://www.huffingtonpost.com/erica-jong/tears-fears_b_80679.html


Back to the normal programming tomorrow. This year I have vowed to get educated on all the candidates and of course, blogging is going to be a part of my endless need to talk to myself in public. Bear with me.

We're not going on a bear hunt again...

Dontcha love this book?! The link to it is in the lines below or you can go here and see the man himself recite it on you tube - definitely worth the viewing. Ellie loves this book. Thanks to Lena for getting it for her - hours of fun, and I do mean hours!

The last line of the book in particular (also the header of this post) describes perfectly how I feel right now. In the book the family optimistically and enthusiastically goes out on a bear hunt and it starts off well enough:

"We're going on a bear hunt,
we're gonna catch a big one!
What a beautiful day.
We're not scared!"


Then they encounter progressively tougher travails until finally they meet the bear who then chases them all the way back, through all the same travails, until they get to their house narrowly escaping his claws and everyone burrows under the covers together for like a year.

Yep, that's me, blogging to you from under a huge pink comforter with Dave and Ellie each doing their thing. We're just not leaving the bed for awhile. It was that kind of trip.

We are all in one piece though all of us sick as dogs. No bears or lions or tigers either, mostly. Will fill you in on the details in the near, near future as I need to pick the brains of you moms and dads and persons with bodies like Ellie's who have survived a little longer on this path than me. It is clear to me that we are at a turning point with Ellie and disability and access. Sigh. No one likes change, right? But for the moment, it's all about burrowing under the covers, tending our wounds, regaining our health, and our courage to brave another day.

We are surely not going on a bear hunt again!