2021 Check In/ Be In

 Hi Everyone,

We are still here and all vaccinated with Moderna. Because of Ellie our whole household and her carers were all able to get vaccinated. Dave and I are classified as "in home unpaid essential healthcare workers". Ain't that the truth! ;-)

I'm still worried about variants but not so freaked out about being within 3 feet of people while masked at the grocery store and not so freaked out when people walk by Ellie really close (we are obviously still masking while in public).  It is incredibly to read the news and see how many people are not really distancing in stores and to see the spring break events that might be super spreaders. Everyone is really fatigued by it all. Now that it's spring and the weather is a little warmer I do feel a life of energy. There's still not much to do, it's still very repetitive, but I'm trying to pull out of that fatigue.  Ellie's feeling it too. She's quick to cry and was just sick with some mystery virus - 102 fevers for 4 days with advil. She was tested and it wasn't covid but still hard. She's been tired. We worry about her iron levels and her diet.  I just found this great book: Dropping Acid by two doctors who researched reflux and the pepsin issues.  I have reflux too as it turns out - the lump in my throat that has been a constant for years and the hoarseness of my voice. My voice was so tired at the turn of the year my vocal cords would seize up. Not good as my job is teaching, coaching, consulting and all over zoom. Turns out the combo of 'silent' reflux, too much singing to Ellie in the months we  had no help, and all the zoom meetings contributed to vocal cord fatigue.  So I need to change my own diet AND I really needed to change Ellie's too.  Turns out the number one reflux food is chocolate and I had been giving her chocolate (avocado) based pudding every day. No wonder I have not been able to get her off the reflux meds! ughhhhhh.  The good news is avocado is a great food for refluxers. 

What I love about this book is that it's about controlling reflux with diet.  Have been revamping all her recipes and need to expand her diet anyway. It's an ongoing dance. 

This spring some of her favorites are:

Ellie's favorite hairdo - the big bun!

Obla di Obla da (especially the Gabriella Bee version)

Footloose by Kenny Loggins. We tried to watch the remake but it starts with a car crash - do not recommend. She liked the 1980's version better anyway - go 1980's - it's way less violent.

Ellie says that after the pandemic she wants to have a family reunion and go to Africa - specifically - Egypt! I'm so there...some day.  She also wants to go to her local coffee house again and do iPad club there. She misses the bustle of the place. 

She's still into dance parties and jam sessions. 

We are nearly done with all the Harry Potter books. 

She was doing virtual school for so long one of her favorite things to do was go visit her school at the weekend and look in the windows. She definitely struggles with the constraints of school (e.g., the schedule) but she certainly loves it just the same. 

Ellie at her school.

We started bullet journalling including 1 for Ellie for us to track her diet and care daily and she has a journal where she can recorde favorite questions, put photos in there of selfies with carers, and record her monthly top hits. A carer gave her this to track her hair styles too and Ellie really likes it. It's a way to give her choices too. We got her a little instant photo printer that she can use with her iphone. Oh - yes we got her an iPhone so she can keep in touch with her friends and family.  She likes doing selfies. 

That's the latest.  It's a hard time globally for everyone. Waayy harder for some than others. Everyone is under so much pressure. There's tension between those with privilege and those without and COVID deaths report that better than anything else. I am hopeful that coming out of this there will be social and environmental innovations that make the world a better place. 

Hope matters. Everyone is in their shadow - so compassion matters too.  

If there is anyone reading this - I am wishing you and your loved ones grace. Wish that for me too. I need all the help I can get. ;-)

2020 Post, COVID-19 Edition

Hi Everyone,

Checking in. We are ok - COVID-free so far. We are pretty much trying to shelter in place as it'd be bad if Ellie got the virus. She eats by mouth but a teaspoon at a time. A 1/2 cup of puree can take her 30-40 minutes to eat pending her appetite. When she is sick that time period can triple making it hard to keep her energy levels up. Her drinking is about a tablespoon per "drink". For Ellie drinking means we pour a small bit of water into her mouth and she then carefully works to swallow it.  She has low lung capacity from having had borderline chronic lung disease as a preemie and no capacity to do aerobic exercise. I don't know, due to her low muscle tone/hypotonic Cerebral Palsy, if she'd be able to cough it out if it went in her lungs. It could get into her brain or heart per the sequelae that has been reported.

Ellie in her stander.

So best not play a deadly game of dice with her. We are playing it safe, keeping her home, keeping ourselves very distant from others.  This thing is so contagious if it entered our home we'd be hard pressed to keep it from her as she is total care. We are blessed that we can shelter at home in terms of still keeping our jobs (so far) and having found ways to get food delivered.

Ellie's transition to "home school" was hard on her. We found about about 3 weeks in that she thought she was the only one who had been sent home. She started talking about "old school". She was really weepy breaking out into tears at random. Grief visits us all this way, a friend who stops by unexpectedly at the oddest moments. I think she thought she was being punished.

Once we found out we started reaching out to teachers and students to show they were at home too. That helped.

Her other upset was to realize that being home was not equated with the famous "no school" and that home school was an actual thing. That was quite a disappointment in her young life indeed.

Her teacher was also very slow for the most part to go virtual. They were uncomfortable with tech but also had already had trouble connecting with Ellie.  She is a bit adrift of connection and the poor handling of zoom  webinars means she is talked over, the pace is too fast and she is left behind with sensory overload. It's disappointing and an organizational psychologist I get what a huge sea change this is for the teachers. So patience is king here as we all pivot and shift and deal with the struggle to manage everyday things that were once easy that are now hard.

AND I get it that this comes from a hugely privileged place. My "problems" are good problems to have versus real problems including poverty and skin color discrimination and flat out danger because I am white. Life, is and has been for hundreds of years, exponentially harder for brown and black skinned fellow homosapiens here.  I am reading Ibram Kendi's How to Be an Anti-Racist and just finished D'Angelo's White Fragility. If I want there to be more tolerance in the world for difference I need to start with myself and unravelling my own racist indoctrination. I have been working on that for years but am riding the wave of momentum to take more direct action, as a leader in my organization, to accelerate the dismantling of systemic racism where I have influence. What's that saying, never doubt how small acts can help change the world..etc.

The world is reordering itself. Some battles will have to be fought again - like equal access for those with disability to attend school. A new class of people has formed - those vulnerable (and those caring for them in their homes) to the virus versus those that are not. It's a difficult time right now for billions of people. Things are unstable in the US in a way that is unprecedented in my own life time.

For the record - the US did not vote Trump into office. Hillary Clinton won the majority vote. But due to our antiquated electoral system, Trump was able to steal the election just like George Bush Jr. was able to steal it from the environmentalist, Al Gore. Can you imagine how much better the environment would be if Gore had won (he also won the popular vote)? I hope all of this wakes up all the people who don't vote, who don't participate in the active process of being a democracy...which we barely still are.  Could be that we are not and I am just in denial. It is a horrifying thing to understand how deeply flawed our democracy is.

Anyway, I am thinking about all the parents of special needs and typical kids, fellow bloggers and blog readers I have met in writing this blog over the years and feeling protective and worried for us all.

Ellie's Healing Powers

It's been roughly over a 2 months since we were in the ER on New Year's Eve wondering what the future would bring...wondering if she would still be here...still be whole...still be her sparkling, musical, snarky, happy, sweetie, intelligent self.  (scroll down for this back story)

When the ventricles held their own they tested her for other things and found she was anemic.  The symptoms of anemia are very similar to symptoms of pressure on the brain: fatigue, out of sorts, pain, etc.

We treated the anemia and she is back to baseline and along the way they took several more scans...and still no change in her ventricles.

The doctor's proffered up some scary options...over my dead body types of options...no you may not drill into her skull to insert a pressure gage to sit on her brain "just to be sure there is no pressure"...look to the child for crying out loud and the child was only minimally symptomatic.

There was that whispered hope though that maybe, possibly, her body had figured it out...we'd have to wait and see which felt like playing Russian Roulette with her life. As every parent of a child with any chronic medical issues knows, it's alway navigating toward the lesser evil when it comes to medical interventions. Wait and hope she doesn't get more brain damage or do someting that could give her more brain damage... shitty choices indeed.

We waited and scanned.

Our last visit to the neurosurgeon - who has taken a team approach and discussed Ellie with her pediatrician - I like her because of that - said that she had studied all Ellie's scans and that she suspects Ellie's shunt hasn't been working for a long time. The only clear scan of it is really years ago.

That and the fact that there has been no change.

The plan is this: scan her again in three months. If that is ok, then scan again in 6 months. And if that is clear go to yearly. She suspects Ellie is shunt independent.

This means that our child who left the NICU deaf now has perfect hearing.
Our child whose vision was so very minimal is now at 20/200.
Our child who had ventricles that could not drain the brain's cerebral spinal fluid because they were filled with scar tissue from the bleed, can now do that on her own without extra plumbing...

The messages I have been giving Ellie are that her body has amazing healing powers. That she is so very strong. All of the doctor's visits and the conversations have of course scared her as much as us.
The message is, your body is an amazing healing machine!

She gets a little smile when I say that too her...she's pretty patient with me...

Designing Your Life With Intent

I found this so spot on and inspiring. 

A person is a person no matter how small...

There have been some disturbing events recently that I have discovered via my Twitter account. The first involves "dwarf throwing". I am disgusted by this in general. It's amazing that there has been, to date, no prosecution. Even in the writing of this article about it you see the violent offender called a "prankster". Really? Someone who throws another HUMAN BEING (who is not bothering them in the slightest I might add) down on hard ground resulting in them being paralyzed is a "prankster"???? What is unbelievable about this and so disturbing are many things including the obvious a) that this takes place at all, but also b) the reporting of it is almost conspiratorial with the violent psychopathic act itself by naming the perpetrator as a "prankster". Just plain wrong on so many levels.

Secondly, this case made me very sad for Amelia, her family, for all people with physical differences in general, and our society. I hope Ellie doesn't need any organ transplants because apparently people with developmental delays are not worthy to be on the list, not worthy of doctors time to operate (even with a family donor) and just plain not worth saving. Shame on Children's Hospital of Philadelphia (CHOP)! Things like this fuel my fear for Ellie's future when I am no longer breathing or for that matter even when I am. I hope this mother finds some medical help for her daughter elsewhere. Grrrrrr!

If you are interested in chiming in, in a proactive way, sign the change.org petition. They are looking to get 100,000 signatures and were at 21,000 plus at the time of this post.

Picture Description: Ellie playing with new found Fijit friends. Santa was very good to her this year!

Why the word Disabled does not refer to Ellie

It Doesn't Take a Saint

I was having lunch with a colleague of mine. We started talking about our kids. I mentioned that Ellie was doing really well in school and that we were really happy about it because she has come so far. They agreed and nodded and then said, "You're a saint."

I said, "No, NO! Definitely not. Ellie's a great kid, probably a lot easier to deal with than a lot of kids."

But ya know, I wish I had said something more to the point like, 

"Do you really think you have to be a saint to love your own child if they happen to be disabled?"

And then, in an ideal world, I would have quietly waited for their answer. I am sorry I didn't have it together to say that instead of babbling like I did.

Because isn't that what that comment means? You're a saint because only a saint could love someone who is imperfect or drools or is just basically in that other category most people don't like to think about. Like you have to be Mother Theresa or something (no offense to Mother T.) but jeez!

I remember one of the other mom bloggers writing about that. But this is the first time it was ever said to me. It just seemed so out of context. One minute we were talking about our kids, the next I was defending my child's loveableness.

So for the record - it doesn't take a saint to love Ellie. Not even close.

I go where true love goes, I go where true love goes..

Those words are from Yusef Islam (a.k.a. Cat Stevens) and they helped me to frame an experience I had today that has taken me from love to surprise to annoyance and anger all the way back to love.

Dave and Ellie and I went to a very special occasion of some good friends of ours today. We went there because we love these people and wanted to celebrate with them the joy they were holding up in gratitude. It was lovely to witness their happiness.

As we were sitting there after the event and everyone was eating. Ellie was sitting on Dave's lap and we were reading to her and contemplating hitting the food table when my friend came up to get a picture of Ellie. As my friend was trying to get Ellie to look up and smile a woman came and sat down very close next to Dave and snapped her fingers in front of Ellie's face and even stroked Ellie's cheek and spoke to her loudly and harshly telling her to look at the camera. Dave instinctively turned his body and Ellie away from her. That was when I was surprised because when weird things like this happen I am sometimes slow to process.

My friend took the picture and moved on at which point this woman started talking. She asked, "What's wrong with her?" Pointing at Ellie. At this point I was reminded of children who very openly ask about Ellie in their innocent accepting way. I was happy to be there for my friend and my heart was open so I decided to give this woman the benefit of the doubt. So I told her that nothing was wrong with Ellie but she did have Cerebral Palsy. She asked what exactly that meant. So I explained that CP is somewhat of a garbage bad diagnosis and manifests differently in people that have it. She persisted and her voice was getting louder. She said she was a psychiatric nurse but she didn't remember her medical training around CP. At this point I had Ellie come and sit on my lap from Dave's and a bit farther away from this insistent person. I started to read to Ellie and talk to her to basically distract her so she wouldn't pay attention to anything this woman was saying. Ellie understands allot for her age even as compared to a typical 5 and a half year old. She was open mouth gaping at this woman as if to say what is up with you? Do I know you? Why are you talking so loudly? This is when I got annoyed.

This woman is what I would call a low self monitor. Someone who doesn't take cues from her social situations very well. She was insistent upon delving into our personal lives. She asked us if Ellie was happy. We said yes. She was so puzzled by this. Then she actually said, "But are you happy, really, how can you be?" Dave and I said together, "Yes we are happy, we love Ellie!".

To which the woman replied, "I often wonder how parents of handicapped children can be happy. I myself could not have kids but we adopted one from Guatemala and one from Costa Rica. It's awful about the down syndrome kids isn't it?" The whole time Dave is saying less and less. Then she launches into a rant about how people abort down syndrome babies and how wrong that is and how all the research she has read show that women regret it and on and on. This is when I felt anger. Anger that she was saying that in front of Ellie. Anger that she was talking about this to us at all. Anger at all the crap she was implying. Anger that she was hard lining it about woman's reproductive rights and thinking that she could possibly understand how all women would feel regarding abortion. Angry that she was letting Ellie in on the fact that some people. and I hazard to say a majority, don't feel like a disabled life is worth living.

What do you do in this situation? Do I tell her off? No. Do I get up and walk away and make a scene and ruin my friends special day? No way! So instead I nudge Dave and ask him to get us a sandwich. The talk of food was enough to distract her and she went to get some herself. I was relieved that she had gone though I still felt very bad at this whole thing. The joy I had felt earlier for my friend had seeped away and I just wanted to get out of Dodge. And then I felt bad that I let someone's ignorance and bad social skills influence my state of consciousness in a such a negative way on my friend's special day.

It has been this combination of emotions that I have been battling with for the rest of the day. It's really not worth it right? And I have to say these feelings flared slightly around lunch time but then I decided to let them go. Because I love Dave and Ellie and we are happy and other than that brief encounter were having a really nice day. That said, the whole experience was sitting uneasily in my chest like a restless thing that was padding blunt feet one level above my awareness with the consistency of some far away jack hammer.

It was not a day I wanted such distractions. Later in the afternoon when Ellie was getting her avocado she was watching the Signing Time, "Time to eat" video. She had her little Weemote and put on one of the songs she doesn't usually put on. It was one describing breakfast lunch and dinner. She did this and when I came over with her food and she put her hand on my arm and looked at me and then to the video. And I knew what she was asking. And I said, you are having a SNACK! That is between lunch and dinner. Snack! And she was delighted.

A few moments later when I came back from getting her some more food at the counter she had switched to the part about setting the table and as I came closer I saw her practicing the sign for cup. She would bring her hands together as Rachel on the video would demonstrate the sign for cup. Ellie would do her cup then she would switch the video back to cup and try again. She did this four times. Cup, practice, cup, practice, cup, practice. There she was practicing not caring if anyone was looking. Just totally absorbed in learning something she wanted to learn.

Looking back on that I feel lucky. Lucky enough to get to see Dave and Ellie, these two extraordinary people, in private moments you are only a part of in a family. Like Ellie practicing how to sign cup when she thought no one was watching .

Ellie went to bed around 9:30 tonight after falling asleep on my lap. At this point I started searching You Tube for something to watch. I found JK Rowling's commencement speech to Harvard which was good. But that wasn't what I was looking for. There was some bit of wisdom out there that would settle this restlessness or at least comfort me. So I typed in Cat Stevens as I have been a long time fan. That is when I came across the song titled "Heaven/where true love goes". I realize that Yusef was singing about god but this song made me think of Ellie.

"Follow true love, follow true love." I do and that is the simple explanation that we gave this morning. We love her and that is enough, that is allot. I don't need a reason for that or to justify it to onlookers. I don't need pity because I have so much love. And just like that, upon hearing that song, I felt my heart open and my mind was put at ease.

May 1st is Blogging Against Disablism Day 2008!

If you haven't been over to see the hub of Blogging Against Disablism Day at Diary of a Goldfish - get on over there. Goldfish has done a fantastic job writing about this as well as rounding up many excellent posts on the subject.

Below are the links to some of the many posts I have written about Disablism and it's damaging effects:

It's Just Cerebral Palsy
The Goal to Be Normal
From the Outside Looking In
Protesting the Brutal Murder of Brent Martin
My Two Sense
Even Bigger Picture

I have thought about my own isms quite a bit over the course of my life. There are many out there. Disablism is a central theme in my world today because it is something Ellie does and will face. So when you think about Disablism, think about Ellie. And if you have questions about it or ignorance, just remember anything you do to learn about it or fight it, you are doing to help Ellie and all future and current generations be more accepted in the world.

Experience is Worth a 1,000 Words

Yesterday Dave had to bring Ellie to her new neurologist. My last visit with him was fairly useless. I could tell he had written me off before he even met me because he was really dismissive and didn't answer my questions and only met with us for about 7 minutes. And he had no answers. I left feeling very frustrated.

So move forward one year to yesterday. I had to work so Dave had to take Ellie in, which I thought was really good considering my failure at the previous visit. We discussed what we wanted to talk to him about - mainly that we are worried that the useless shunt that Dr. Death installed is taking away Ellie's vision. Also we want to understand what her third and fourth ventricles are doing (since Dr. Death's big mistake where he allowed Ellie to leave the NICU and go home with active hydrocephalus with third and fourth ventricles blowing up like balloons pretty much taking out her cerebellum. Yep more brain damage on top of an anoxic brain injury at birth. That is a pain this mother will take to her grave). Anywhoo, we wanted to get an overview, discuss an MRI and also what Ellie's unusual ability to read and read a lot meant in terms of brain development. Ellie has like a 200-250 word READING vocabulary (she understands many more words that that at an age appropriate level for a 5 year old - maybe more but hard to tell). But in terms of words if you say them she could pick out of a line up and/or also spell out on a letter board - that is pretty good isn't it?

In the morning Dave and I were rushing around getting ready (you have no idea all the things we have to do each morning to get Ellie and ourselves out the door- it's post worthy). Dave gets Ellie in the car and comes running back in the house and grabs Globee (affectionately - Vtech's Sing and Learn Globe) and Ellie's Magnadoodle and dashes out.

That evening at dinner he told me how it went. He said the meeting got off to a slow start. After the weighing and measuring and reflex testing the doctor asked about Ellie's development. Dave mentioned that she could read and the doctor looked skeptical. So Dave handed him the magnadoodle and said write down anything you see on this Globe but don't say it - just ask Ellie where the thing you wrote down is.

The doctor wrote down "North America" Before he was even done writing, Ellie, who though she often looks like she is deep in to playing with her toys is always listening to it all, immediately spun the globe to North America and put her thumb on it and laughed. He did it again with a couple of other places and Ellie enjoyed showing off her skills.

The doctor was really impressed and said that Ellie being able to recognize so many words is unusual for a 5 year old.

He then seemed more engaged and interested in "the case" which is Ellie's life.

He took a deeper look at the last CT scan we have of Ellie from her last emergency seizure scare last year and showed it to Dave. Ellie's third and fourth ventricles are teeny tiny! Ok - they would only have gone down if there were brain growth to be pushing on them even with a shunt there has to be brain growth dynamically make what were once huge water fulled ventricles that small. Balm to mama's heart for sure! He also paid more attention and addressed the issues Dave brought up after that (some of the very same issues he sidestepped when I brought them up one year ago which of course made me think he is a big chauvinist to pay attention to them only when a man presents them - but that's the gender chip on my shoulder - I really think it was because of what he saw Ellie do with Globee).

I was so impressed by Dave's willingness to just go in there and share his joy with Ellie and in what Ellie is capable of. It's a contagious thing - Dave's enthusiasm for his daughter.

And, as far as visiting doctors, that is so how it's done. If we have to prove Ellie does the things we say she can - Fine! And thanks to her experiences at her new school she doesn't turn into a lump in public anymore and enjoys showing off a bit.

I don't know when doctor's decided that parents are constantly unreliable witnesses to their children's behavior -but I have been experiencing that more and more - the proverbial eye roll when you tell them what Ellie can do. Which really pisses me off because I am not one of those parents who want to see their kid through rose colored glasses. No way - in our case that would be dangerous, literally medically dangerous if I were to gloss everything up all the time. No. I am really fine seeing Ellie just the way she is and keeping my level of hope for her at a steady sane pace, hoping for the world for her but seeing her, really seeing her for who and where she is and taking joy in that. Because she is perfect just the way she is and wonderful in that perfection.

So, fine, next time I will just have to show them what she can do rather than tell them (and take Dave with me)!

Bullying has been on my mind lately

I think the universe is telling me to do a post about bullying.

A week ago my sign language teacher signed the Peter, Paul and Mary song, "Don't Laugh At Me" in class. It's about bullying. Also, Peter, Paul and Mary have initiated this campaign across the country to directly address the behavior they sing about. Cool beans, eh?!

Then David writes this AWESOME post about how he taught a group he was speaking to what a bully is. David, that is way good karma! Just a wonderful thing he did not only for his audience but for readers of his blog. Major catharsis.

So here is my experience with a couple of bullies. As it turns out I have first hand experience being bullied. I grew up with a bully in the form of an older sibling. She hit and intimidated me every chance she got starting when she was close to puberty. There was also a bully in our elementary school her name was Terry M. She would intimidate kids on the playground, take their lunch and their place to sit. She shoved and mocked and spread rumors and in general created a negative experience for whomever she was targeting at the time. She had a couple of tougher bigger girls she was friends with making a little terrible threesome. She was scary.

I actually only learned what a bully was when I finally stood up to my sister. She was beating the crap out of me and my parents said, "Take it outside." I refused always to hit her back because I was a pacifist. Not that I knew the word for it. But all I knew is that I didn't want to be someone like her who hit and was mean. I wanted to be the opposite of her. So when she hit me I didn't hit her back. But this time was a little different. She had me pinned down on the grass and was punching me in the chest. It hurt. It was hard to breath. And all of the sudden I had this moment of clarity. A calmness settled over me and it said, "You're going to have to hit her." I sighed inwardly, because I really didn't want to. On the other hand she was hurting me and it was getting even harder to breath. So I balled up my fist and aimed right at her face and connected with her lip and nose somehow all in one punch. She looked really surprised as the blood welled up on her lip and nose. I thought, "OK here it comes, she's going to go whale on me now!"

To my GREAT surprise, she did not go bizerk. Instead she started to cry and yelled, "Mom, Kathy hit me!" In that moment I learned what a bully was.

My parents punished me for that. I was grounded for one week. But I didn't care. I had this huge realization as if a weight had been lifted and my sister never engaged me the same way again. There were still the punches in the arm if I was ever stupid enough to walk to close to her. But she was wary and we never got into a fist fight again and I was grateful.

There is no good outcome for the bully either. Bullying me and others was the way she expressed her pain and fear. And there were fewer friends and happy moments for her, I think, than I experienced. It's not a good way to be for others or for yourself, being a bully.

Terry M., our elementary school bully, fared no better. By the time high school rolled around and she was no longer the biggest kid and I think one of her posse moved away. People were no longer scared of her. Her elevates status and dwindled. In the bigger pond of high school she was a much smaller fish. She couldn't bully anymore. In fact she was quite unpopular. In my town, people didn't move around much so most of the kids you started kindergarten with you also graduated high school with. And people remembered her unkind deeds. I would often see her in the halls alone. She was not in the college prep classes. I heard she ended up working at her parents mini golf for awhile. I don't think the bullying did her any favors in the long run.

If the world is ever going to be a better, safer place, especially for people with disabilities, it is critical for parents to not only talk to their kids about bullying but also not to allow it in the home. I think often bullying behavior is learned from a bullying parent or it can be learned from older kids if the parent is absent. It speaks of anger and rage and causes so much damage, especially these days when kids aren't duking it out with fists but guns. It is a much tougher job to be a parent who intervenes and is close to their kids hearts and minds than one who ignores the subtle hints of trouble. It takes constant effort and work. But in the long run and even in the immediate moment, it's worth it.

Have you ever been bullied?

The Road Not Taken

"Two roads diverged in a wood, and I--

I took the one less traveled by,

And that has made all the difference."

~Robert Frost "The Road Not Taken"

Am I in denial or enjoying the gift of experience?

I have been thinking a lot lately about the movement to build awareness to the serious medical sequelae due to premature births. This movement seems to be led by other parents of preemies as well as medical professionals. The sequelae, or following complications, are serious, sometimes deadly and more often then not effecting the child life long.

I was speaking to one Ellie’s doctors about how few physiatrists are out there and I said I thought there were going to be even more kids that need them because they are saving the preemies these days. And he said that actually the rate of disability has stayed the same and was not increasing as medicine was catching up with itself. What he meant by that is, for awhile doctors could save the preemies but would inadvertently, unknowingly, do things in that saving of them that would injure them for life that now they don’t do. Like how in the NICU they would give the babies oxygen to keep them from desaturating but then keep them on the oxygen while their blood oxygen level stayed at 100% for hours. The result of this was that the premature infant’s retinal vascular structure would grow like crazy hurting their vision to the point of blindness. Look at many of the preemies on the blogs and loads of them have thick coke bottle glasses for this very reason. This condition is called Retinopathy of Prematurity (ROP). There isn’t as much ROP anymore, even just 5 years later. Ellie does not have glasses because of ROP. Her vision is compromised by her hypotonia, which makes it difficult to keep her eye muscles still. We were lucky though because she didn’t have to be on Oxygen that much because she did not, have chronic lung disease that many of the preemies do.

But the doctor saying that the preemies were coming through it better was heartening to me. I wonder if medical science will keep pushing the envelope so that one day the viability age will decrease even more. I am not advocating for this one way or the other just wondering. I know that that viability rate moved from 27 weeks to 23 or 24 in the past. Ultimately I am still of the stance that it is the parents’ decision and that the doctors are responsible for a) giving them that choice and b) understanding themselves and then communicating the current data. Communicating trends would also be good because medical data with it’s limited populations from which they draw conclusions such that the numbers should definitely be put into context so that parents understand what is really known and what is a guess. And in the premature baby world there are still guesses, especially about outcomes.

If the doctor that I had this conversation with is right then it seems that as medical science catches up with its experiments in saving the preemies the success rate is increasing. And that’s good. I am now five years away from the NICU experience. We met with Ellies pediatrician today for her five year check up and he was happy to get to see Ellie when she was not ill. He said it was obvious to him that Dave and I were doing a good job. That was great to hear from a doctor I really respect and knows what he is talking about because he runs the NICU at Brigham and Women's hospital in his spare time so he really knows where Ellie started. When he first took Ellie on, he was grave and straight faced and serious. I think he is pleased with her progress. I can't believe it has been five years. This visit, this accounting for where she is now, this weighing in and measuring, got me thinking about what success looks like. That is a quote from an old boss of mine in Organizational Effectiveness. He always used to ask the teams he was leading, “What does success look like?” Because teams always say they want to be successful. So it’s good to know it when you see it, right?

So what does success look like when it comes to saving a premature baby?

Well success most obviously might be the totally healthy child with no other obvious sign of the rough start than the oblong preemie face, which let's be honest is adorable. But could success also be the child that only has mild cp and can ambulate but is otherwise within the usual developmental ranges? Sure they will need assistive technology, possibly a wheelchair eventually or a cane or AFO’s. But is that tragedy?

Could success also be the child who is left quadriplegic, but not twisted and bent in his chair, and instead an example of what can happen when parents cope with this different and often difficult path extremely well with hope and constant vigilance over their child’s life? So that he then goes on to contribute thoughts and words to the world that enlighten us all? He can do this because his parents never treated him like he was disabled.

What about my Ellie? Is she a success simply because she is here and in one piece after her atrocious start? Is that enough? Is it correct to suggest that everything she is accomplishing is a success story or is it better stated that she is just like any other kid doing well at some things and not so well at others? Or am I denial to suggest that she is doing well at all? What if I admit she is different from other kids? What if I freely admit that I worry for her future? How do these worries really make me different from any other parent?

Was it something unique in my past that prepared me so well that today my main awareness is that I have this loving, funny, sweet, opinionated, beautiful little girl who lights up my world and warms my heart and soul every moment she breaths? Or am I just a sad sac in denial and if I had any sense would just focus on illustrating all that is wrong as a warning and help to other parents that they may avoid my horrible life? Hmmmm. Now that’s a tough one.

The Goal to Be Normal

On the surface this goal generally means things like these:

to walk
to talk
to be entirely self sufficient - including feeding oneself, toiletting oneself, and in adulthood taking care of oneself - though that last one has all sorts of variations
to do the same things most of the other people you see on the street do like:
to go to the same school as your neighbor's kids
to progress through school at the proper year
to be able to run, crawl, spin, turn and all other wonder of gross motor skills
to be able to write and draw and manipulate things with the fingers - fine motor skills
And psychologically:
to love and be loved
to not be a sociopath and harm others

Under the surface the goal to be normal means these things:

to be worthy and valued by society (ever hear that phrase to be a contibuting member of society?)
to be loveable
to be understandable
to be happy
to be valued (kind of an add on to the society one)
to be worth medical care, educational investment, and society's tolerance in letting you safetly exist
All in all to be considered a member of the social group with a voice to be heard

So what is this thing called normal? Why do we try so hard to define it so very narrowly?

I met with a group of parents this weekend who all have a kid in Ellie's class. All with special needs. All outside these narrow confines of normal. All great parents who have stood by their kids and had to fight and fight and fight and fight some more in battles as varied as a box of Bertie Bott's Every Flavor Beans. So many battles.

I have also been thinking about the goals for Ellie, especially getting her to walk. I am a bit perplexed by it. On the one hand wanting to give her every opportunity so that if she can she can be upright like everyone else...

On the other hand I don't want the goal to be for her to walk if it twists her spine up and crushes her organs in the process. That is not a dream either. I have met a few parents and their scoliosis ridden children who have paid this high and painful price to achieve something close to normal. Parents proud and thrilled that their kid walks. Stories of hours in the stander. Having to leave the room because they couldn't stand the screams from their kid as their spine shrunk onto itself because of muscles to weak to keep them up and they twisted into a shape that made them veritcle and more transportable. Yes - there are parents out there like that.

It horrifies me.

But this weekend, the thing I found most wonderful about our little gathering was that each of us appreciate our own and each other's kids for who they were right then and there. Not for what they will become. Because they all have neorolgical issues and we all agreed that the doctors can't predict outcomes - especially neurologists. I was in a situation where the parents all knew their kids really well. The bonds were tangible. There was no crying or fighting and lots and lots of play and fun. I was in a situation where wipping out the g-tube to feed your kid or give them meds was done with out blinking an eye. I was in a situation where none of the kids was verbal but all were communicating quite well and every adult understand what they wanted - a toy, a hug, enteratinment.

It was nice. It was our normal.

It's sad and just plain wrong when the under the surface goals of being normal seem to have to relate to surface qualities of looking like everyone else and doing what everyone else does. It was a given with these parents that we love our kids and respect them. It is a given that we are all fiercely protective. Sadly we all had stories of cruel comments and unkindnesses directed at our beauitiful children - Ellie and Xavier being the oldest at the ripe old age of 5. Can you imagine being mean to or making a snide comment about a child? A toddler? Someone under the age of 5? It's unbelievable.

So, that is my question. What is the goal of normal? Why is being normal so valued? I am not sure Walking is it.

David, very, very graciously answered my question about high tone here. Thanks David. I realize it's the least favorite thing you like to blog about. I am very grateful. You have had me thinking every day since you posted about it. You have reinforced my belief in tummy time.
I am always impressed when I see pics of you sitting so straight or lying prone propped up on elbos reading as you have a bite to eat. I can only hope that Ellie will be so strong some day. I am in the shade of your parents who protected you so well and helped you be you based on you and nothing else. It's threading a needle to do that so well, to understand when to intervene or not intervene. I am constantly threading that needle. Some days I feel I have drawn blood and missed the mark, other days I feel like I have gotten Ellie through to safety. It's hard.

Violence against people with disabilities is alive and well. It's violence against people who can't defend themselves. I wonder if, as we integrate more children with CP into our public schools if more incidents like this will happen? I hope we can do a better job as a society to educate ourselves and our children about differences. About not fearing differences but respecting them and celebrating them for all the learning and wonder they bring to make the world such an fascinating place if you have the eyes to see.

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.

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.

Things you can't say to my face

True story:

A mother is travelling to the hospital in an ambulance with her daughter, a cardiac patient, who also has CP and uses assistive technology to communicate. Her daughter has a fever of 102 and possibly pneumonia. The EMT, who is unable to get the IV in, suggests using a new method to access the girl’s system internally (despite another easily accessible point – the girl’s g-tube). The mother asks what it is. The EMT pulls out a drill like those you see from a hardware store and tells the mother it will help her easily access the girl’s bone marrow so that she can give the girl any needed medications. Mom, flatly refuses. The EMT in trying to convince mom says,

“We’ve tried this on lots of real people.”

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

hmmmmmm........

Ashley Treatment Goes Abroad

Emma does a great job at summing up the horribleness of this. NPR also reported on this yesterday. Emma posts the UK article here. I totally agree with Emma's thoughts on this only to add that this is also a feminist issue. I feel strongly about this being the mother of a nonverbal girl with Cerebral Palsy. I had period pains too when I was young - really really bad ones. And you know what, I got a hot water bottle and Tylenol but was allowed to keep my uterus. I haven't heard of any growth attenuation "interventions" being performed on the boys (which would be equally awful). If this were not a feminist issue I think you would be hearing about that too as men are on average larger than women in terms of weight as an issue for the seemingly allmighty care-giver / management paradigm.

Part of me was also very saddened to see that doctors in the UK sanctioned this. I always think of the UK as being so far ahead in social issues. Maybe it's because they are a much older country than the US. Or maybe it's because when we go there we see people protesting in the streets not to irradiate their food and for more organics. People seem so conscious there. I am now disabused of this abberration. What were those doctors thinking? I hate the precedent this is setting. Is there no safe place for the nonverbal PERSON with Cerebral Palsy?

When did a person who can't speak for themselves suddenly become a nonperson whose organs are up for grabs? Didn't Hitler round up a good many disabled people and let his mad scientists perform experiments and eugenics / sterilization on them? How is this any different? Did no one read Dr. Zeus? " A person is a person, no matter how small" or no matter how different for crying out loud! Why isn't this a given people?!

It's an incredibly awful, misguided, misdirected answer to huge problem of lack of support, medical equipment, etc. for people with gross motor issues and their carers.

It's just so wrong. There has to be a better answer than this. What kind of world is this creating?

Slam me if you will. But have a think about how you would feel if you were trapped in a body and had someone make this decision for you.

Channel 5 is Asking the wrong questions about Educational Funding

Overview added for Disability Blog Carnival:

Often the media in it's mad amoral quest for ratings and sensationalism gets the story all wrong. Below is my experience with Channel 5 who are asking questions about educational funding for disabilities. Had they done their research versus just skipping stones they could have easily gone to our government's educational budget site and found that Disability funding which includes education for kids like Ellie is in a totally separate universe than education funding. They also would have found out that Ellie's town that sends her to an all special needs school gets reimbursed about 90% of the cost and then some. So it is even possible that they are spending less to send Ellie to school than the typical kids to the typical school down the road that we tried so hard to make work for Ellie.

Crappy reporting like this that is ill researched and biased to begin with only does more harm than good. So there you have your average Joe watching Channel 5's report and thinking those damn handicappers, what do they really need school for anyway and to think my kid has to wear the same football uniform two years in a row because all the money is taken up by special needs.....gRRRRRR . Channel 5 - get some scruples! And if you are going to be asking questions about all of this - ask the right ones.

Here is the original post:

Today the Channel 5 news team, who are doing a piece on special education and the main streaming trend, interviewed me.

I did the interview because Ellie’s school asked me and if there is one place I want to give back to it’s her school. I thought their story was going to be about discussing the need for special education and the issues around mainstreaming kids like Ellie. What it turned out to be about was money. I don’t know why this surprised me, because, you know, money is what makes the world go round, etc. But it did put me off a bit because I thought the reporter and the producer were not asking the right questions.

Instead of asking: (For the record - I am paraphrasing these questions and in some cases the implied question and the underlying issue).

Do you think we should be spending so much money on special education when teachers are getting fired and sports programs are being cut?

I think we need to be asking:

Why is it that so much of the Federal budget goes to war versus supporting our schools and the future of our country through properly educating our children?

Instead of asking:

How do you feel about the fact that money is being taken away from “our best and our brightest” to fund special education?

I think we need to be asking:

How do you feel about the fact that the state and federal governments have been continuously cutting back on school funding for the last 20 years? And how do you feel about the fact that you don't even rudimentally understand how the budget works and that funding for special needs is not coming out of the federal or state educational budget! So sending Ellie to school is not taking any oney away from educational spending at the town or state level.

Instead of asking:

Are the disabled really worth educating?

We should be asking:

Why as a country do we allow for such poor, misguided, biased journalism? We should also be asking why, as a country, are we choosing to elect officials and allow for public policy that allows for the continuation of a broken public education system? Why are we, as a people, not calling for serious education reform?

I hate zero sum questions. Discussing whether we can take money from special education and use it for the football team instead is the wrong conversation to be having. Asking me whether I think Ellie is less worthy of an education than “our best and our brightest” is DEFINITELY the WRONG question to be asking.

This type of poverty of consciousness is the symptom of a particular type of fatigue that is prevalent in our society today. It’s the, well we can’t change anything at the higher levels of government, especially with Bush in office - fatigue. So let’s just assume there is a limited amount of pie and bicker over it - fatigue. It’s the our government isn’t listening at the higher levels and our domestic spending is incredibly screwed up - fatigue. It's the, there's not enough money to educate our best and our brightest so let's blow the lid off the seedy underbelly of special education - fatigue. (please tell me - what seedy underbelly?)

It’s all just so NOT what we need to be discussing. We need to be asking ourselves why do we elect officials and allow for legislation that has put our country’s educational system into a state of disrepair and poverty?

For the record, I think all children, able bodied, disabled, rich, poor, all ethnicitys, etc. – ALL - have the right to a free, high quality public education. I also understand that when I say, “free” as a taxpayer that means I am the one who will be paying my share. And I am fine with that. I was fine with that for the 20 years I worked that I paid into the system and had no children just like I am fine paying social security tax even though I am sure I will never receive any benefit from it personally. I am happy knowing that someone’s grandma is able to get health care because of my contributions. That is my social responsibility as a member of my society and I am happy for it. I don’t live in a vacuum after all.

Social responsibility that is followed by social action is what needs to be discussed when it comes to asking funding questions for our schools.

Lastly, the reporter did not realize it, but Ellie is one of the best and brightest. Too bad she couldn't see that.

The piece is coming out in October. I will let you know.

Ashely Treatment Revisited

Jacqui has captured the thoughts of a person on this who is, in the rarest possible way, in the know. Check out her post here.