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.

Spring meltdown

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

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

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

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

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

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

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

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

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

Hey Doc! Here’s what I think

Should doctors care what parents think?

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

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

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

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

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

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

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

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

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

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

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

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

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

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?