Another day out at the New England Horticultural Show

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

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

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

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

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

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

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

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

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

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

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

Is a disabled life worth living?

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

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

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

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

I also support parent’s choice.

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

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

Do I think the disabled life is worth living?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A day out

Warm New England days in March are something to jump on. If you blink you could miss it and be found in August under a dirty mound of melting snow.

Ellie is truly on the mend - thank god. This was her first day out for fun in a long time. We took her to a maple sugar fest and then, of course, to Pete's. She was happy to be there and hang with us, lap hopping between mama and dada playing songs on her phone for us to sing.
We then went to the toy store and she picked out this little guy. We haven't named him yet but "Norbert" pops into my head every time I see him, must be some Harry Potter remnant. I will keep you posted. (Notice the shiny new hardwood/hard won floor beneath him.)

She has been all smiles and giggles. It's great to see her getting stronger. For all of you moms of former preemies and moms of children with weight gain issues - you know what that is like. Two steps forward, 1 kilo back. I am glad we are on the road back just the same.

If I do say so myself, she is a cutie and dada is not so bad either. Thanks to everyone for all the good wishes and kind thoughts when she was doing poorly.

Navy blue icey wet wool scarf

That is what this week has felt like. Cold, incredibly uncomfortable, claustrophobic and scary. A small voice in my head asking, "Why isn't she getting better?" Fear.

Yesterday I took Ellie to the doctors versus the ER because I was hoping to find something that would keep her out of the hospital. Her recent stay left her with 3 bad needle stick bruises, more radiation, and completely worn out. Can't we find a way to keep her home and help her get well. Come on people. She is not getting better. How many days can a little one survive on Pedialyte?

As we bundled up and schleped down to Boston I wondered about the days when the doctors came to you and missed that without ever having experienced it.

As it turns out she had developed an ear infection on top of all else. Her persistent cough had not yet gone down into her lungs so was still just a cold versus pneumonia. She lost 2.5 pounds or one kilo in one week. That really sucks when you only weight 24.5 pounds (11 kilos) to begin with.

Doc gave us two options: go to the ER to do IV drip and antibiotics that way or give Ellie a high dose shot of antibiotics in her thigh. Typical crappy pediatric choices. Knowing they would stick her more in the ER, I chose home and a shot in the leg.

The shot turned out to be two shots because Ellie is too small to handle the whole dose in one leg. Great. The nurse was very efficient in a nurse cratchet kind of way. Clinical. She didn't even look at Ellie or say, ok here we go. Nope. Came in and bam.

Ellie cried and cried and then promptly went to sleep. Checking out. I don't blame her. She even slept in the car seat which she never does. Does she hate me for holding her through it?

She came home and slept some more and more and more. Up for one small meal and more sleep. I kept her hydrated by giving her rice milk through her g-tube in small amounts while she was sleeping.

This morning, however, after hours and hours of sleep, she woke up and smiled. Her adorable, cheeky, all knowing smile. I asked her if she had an aowie and she gave me a dubious look and reached for her toy. She had moved way beyond aowies and what was I doing still talking about it. It was time to catch up on lost play hours.

While she is still tired and sleeping on and off, she is definitely on the mend for real this time. I never thought I would be a mom who relied on antibiotics, but this time I am really thankful for them. I am glad there is no more aowie.

Pictoral Update / Bits and Bobs

Ellie rediscovering the swing at New School with a smile.



















Mama/Auntie Rie and Sweet Cousin Emily visiting Boston














Ellie wanting a snuggle with Auntie Rie and helping to look after Cousin Emily













Ellie on the mend today. ;-)

Stomach Bug Blues/ Bold Boston Bug!

It happened. Ellie started school and the Darwinian-like immune development process has begun. The stomach bug that is affecting most of Boston has landed on our shores. We spent Friday and Saturday in the hospital to keep Ellie hydrated because she could keep nothing down. On Saturday morning Dave and I both woke up with it in force. The hospital rushed us out because Ellie was better and they had us “under precaution”. Luckily Dave recovered much more quickly than me and was able to take care of Ellie who is still sick and keeping down only thin liquids. Sigh.

Don’t come to our house. You will get the bug. The visitors who had been gracing us with their amiable presence took the bug back to Dublin and Los Angles. I send my apologies to both fair cities.

To integrate or not to integrate

There is a current trend towards integration of special needs children into the mainstream. If you had told me this a year ago, I would have said, hurray! That’s great. But after having lived through a very bad integration experience with my very bright, very disabled child I would not have the same response. Integrating a child with multiple disabilities into an environment that is under equipped and understaffed to handle them is NOT a good thing. Here is our integration story and how we changed from wanting her integrated to seeing the benefit of her being in an all special needs school.

Early Intervention (EI) ends at age three. At that point the school system is responsible. For the uninitiated, early intervention includes services such as physical therapy, occupational therapy, and speech therapy, which are delivered in the home. The philosophy is that the child is so sick and or so vulnerable to viruses and infection that it’s safer for them to be home. It’s a hard thing when early intervention ends.

For me it meant that Ellie’s services would end and if I wanted to continue them for her I would have to get them elsewhere and since we are not independently wealthy outside my home. When Ellie was three she was signing several signs and understood many signs, she was making progress with her physical therapy. She had built relationships with some of her therapists and we had a therapy area set up for her with a big mirror hung low by her abc mat on the floor and all her props. These included a sensory bin with beans and objects, shape sorters, big knob puzzles, lycra stretchy fabric that we used to swing her in for vestibular development. It was great. It was hands on. We were there to make sure the therapists were doing a good job and we could be an extra set of hands, learn, and translate Ellie speak to them.

Towards Ellie’s third birthday Ellie’s EI coordinator started to prepare us for the transition to school. She told us that the school would want to put Ellie in a special needs classroom that was 45 minutes away. My knew jerk response was to this was, “Over my dead body!” 45 minutes away? You must be joking me. There is no way I would let Ellie’s precious early days be spent in a car that much of the time and so far away from us and the hospital.

At this point in time, Dave and I had read in a few places that it’s better to integrate disabled children with typical kids because the typical kids help bring them along. There are studies that show that kids in the special needs environment have a lot of down time where they are not being stimulated. Even if there is a high ratio of teachers to children there is still more down time than in an integrated classroom where the other kids are yapping away all day and providing endless stimulation for your special needs child.

We found this a persuasive argument on top of the fact that my EI person was clearly in bed with the school people and got my back up about it from the start. Come on people, my daughter has CP and can’t keep herself sitting up on her own. It makes no sense to subject her to an hour and a half of drive time each day. AND she is only 3! I was so not on the same page with any of that. And will never be as far as the drive time goes. So we went into the whole process with this bias against non-integrated programs.

The next phase was having the school come in an evaluate Ellie. Charles Fox at Special Education Law blog has a lot of info on this whole process if you are going through it. And if you are going through it, hang in there!

The school psychologist came to our house and did not impress us. Ellie clearly did not impress her either. She came in with this huge bias against Ellie, that much was clear. Her evaluation of Ellie was very poor in that she did not accept an eye gaze as an answer. She held objects so far away Ellie could not reach them to pick them. Ellie has cerebral palsy in her arms and hands too so when she reaches to pick something she will first get her hand on the thing and then finger walk her hand to the thing she wants. She is not accurate upon first touch in this manner. The school psychologist would pull the board Ellie was picking from away and say well she certainly doesn’t know that.

She then informed me that the fact that Ellie knew her entire alphabet and colors and shapes was of no consequence because Ellie should be doing more imaginary play. I then demonstrated how Ellie did do imaginary play with my help. Ellie is a quadriplegic. So OF COURSE I help her with the imaginary play. I act as her arms and she directs what her dolls (Maisy, Tigger, Raggedy Ann) do. After a quick demo that left Ellie giggling and engaged the school psychologist’s response was, “Hmph. Her life is just like one big video game.” I was too shocked to respond.

There was another younger therapist there helping with the eval and at times they were both talking at Ellie at the same time asking her to do different things. It was incredible. It sucked. It was ridiculous and gave them no information about Ellie other than making it painfully clear that Ellie did not hold up well to this sort of bombardment. Ellie got upset and overwhelmed as did I. At the very end the school psychologist stood up. Hefted her bag of tricks over her shoulder and said, “Well, I can see, Ellie is a lot of work.” To which I replied, “Aren’t all children if you are doing things right?” I was furious. I started to worry about integrating Ellie into an environment that listened to this school psychologist as a source of expertise.

Before this wonderful experience, Dave and I got our first clue that the school down the road might not be the best place for Ellie. The summer before she turned three we set up a meeting with the head of our local preschool. We wanted to give her a heads up that Ellie was coming, she had special needs, tell them we were excited about her starting and wanted to help with the whole process. We thought we were being courteous and helpful. I entered this meeting with an open heart and got a very chilly reception. From the start it was clear that we were taking up this person’s valuable summer time hours. At the very end of it the head of the preschool said, “It may be that our teachers are not equipped to teach Ellie.” We should have heard that more loudly. I don’t think I believed it. She wasn’t being super direct. She said it may be, not it is. My denial had some food there.

I had to drop some papers off after that. I went to the school myself. I walked the halls of the new building and was wistful. I wanted my little girl to be there running around with the other kids, blond curls flying. That little girl of course does not exist, but I miss her sometimes. I also, felt sure they would not integrate her and Ellie would not get to be in this shiny new building. Looking back I think my gut level sadness in that moment was more due to some sort of premonition that Ellie would suffer there. I was also clearly having one of those moments of grief over everything that happened in general. Facing yet another difference in our situation. Hoping there would be a way to make it all more normal, like everyone else. I wanted her in that school 5 minutes down the road. All of this did nothing for my clarity of thought in piecing all the clues together that this may be horrible for Ellie. And not knowing any other alternative other than the school 45 minutes away…

Even our communication enhancement expert I wrote about here and whom I respect and trust because he truly cares about these kids said he was not for across the board integration. I didn’t listen. I didn’t want to hear that. I was afraid. If she is not in the shiny school 5 minutes down the road, she will be far away in a special needs classroom that will be dirty and the kids will be scary and she will be left sitting there to rot all day. That is what I thought.

At least down the street Ellie was safe- right?
Way wrong.

At the end of our IEP discussions, the school integrated Ellie. They said they would give her copious amounts of therapy, assistive technology and integrate her into the life of the school. They did not deliver on even half of all of this. Their idea of assistive technology was a bean bag. Yes, let’s put the kid with no balance, and no strength in a bean bag. Oh and if she doesn’t like it because she is not supported properly and is not feeling safe we will make her sit in it more each day as punishment for her resistance. Therapies were cancelled more than they were given due to “meetings”. The classroom swirled around her, berated her, and no one understood her. Ellie suffered there. When she was suffering the teachers and her one on one aid decided she was being a bad girl and that she would just have to become more tolerant. She would have to adjust to them not them to her. When she did not want to touch things they forced her to hand over hand. Her Individual Education Plan (IEP) was written very poorly and was a clear indicator that the professionals at the school were in over their heads.

Ellie’s integration experience was horrible. She regressed from it. She got more aversive to new things. She became wary of new people. She hurt and was hurt. I was responsible and pulled her out after 4 months of it. We tried. I was there helping even though they didn’t want me there. Then I let them have her for a month because they said I was in the way. I came back after that and found that they were forcing her to do things. She came home with bruises. The OT did not know the basic cerebral palsy terms. She let Ellie’s head drop on a hard board when she was positioning her. That was it. It was NOT safe. It was NOT the right place.

We left in defeat and sadness. I didn’t know what would be out there for Ellie after that. I set up physical therapy for Ellie through our insurance. I had quit my job to be home with her and she got to heal from her encounter with school. She grew and got stronger and stopped waking up screaming at night and became happier. We gained ground again.

At this point I was more open to Ellie being in a special needs classroom. I truly believe that most of the professional educators at the school had good intentions. But now seeing a special needs environment I realized that they had neither the time or the equipment or the experience to meet Ellie's needs. The head of the preschool during our summer meeting had told us that they had only 2 kids with cerebral palsy over the last 5 years. The school psychologist told me she had only evaluated a couple of children with multiple disabilities in 20 years time.

I checked out three other schools at the point. One was private and one outside the collaborative and one in the collaborative. A collaborative is a conglomeration of school districts who pool resources to address special education. It’s cheaper to do this then send a child outside.

The private one was the best but a 40 minute drive. There was another closer special needs classroom one town over that was great and the teacher was good and the person who ran the program was excellent. But they were full. I even went to visit the school’s recommended special needs classroom (within the collaborative). I brought Ellie and it took us 50 minutes to get to it in the middle of nowhere. There the lead teacher stressed how it was a nice break for the parents and how they were really good at repositioning the kids throughout the day. She pulled out a dusty dirty antiquated switch as proof that they had their stuff together. I did my best to check it out. But it was actually very dusty and dirty and had very little equipment. However there was a ton of staff there when we were. It was obvious they were giving us the full court press. I didn’t trust them.

Luckily for us the summer after our bad encounter with the school a new director of special education was hired and she was enlightened and educated with multiple degrees centered on teaching children with disabilities. It was clear she had compassion for our situation. She was capable of doing the right thing. She actually listened to me. That changed everything. What a breath of fresh air.

In the mean time our dear friend Kelly suggested the school Ellie currently goes to. I never would have thought of it because I did not think Ellie would qualify. It’s a famous school. It’s a well-funded school. It’s a wildly successful school for kids with multiple disabilities. Children go to it from all around the world and it is a 17 minute drive away. When I mentioned it to new SPED Director she was open to it and got on it immediately.

Ellie is now there as reported. She is not integrated. She is the highest functioning kid cognitively in her class. There are four kids in her class and one teacher and two aids. Everyone we have met there is amazing. They all sign to Ellie and project joy at seeing her. There is an open door policy, as they have nothing to hide but excellence. They are finding ways to get other kids closer to Ellie cognitively to interact with her. Today Ellie was actually happier when she got to the school than she was in the car with both mama and dada. That is a FIIIIRRRRSST. Wow.

If you had asked me 2 years ago if I could picture Ellie in a non integrated classroom in a non integrated school, I would have said no way. I wouldn’t have been able to conceive of it. I regret that I was not open to it. The signs were there. People like our communication expert were trying to give me a clue. There were many messages from the universe telling me that the school down the street was not the right place for Ellie. I was blinded by my own fears of the special needs community and wanting Ellie to achieve the best outcome. In my fear of what the special needs community would be like – I stayed far away from it, to Ellie’s detriment. I think also, if we had never tried to integrate her we would have been wondering if we had done wrong by her not to. In truth, at 3, she was not ready to be away from us and outside of the home. At three she had just completed her first 6 months of no hospitalizations. She had a lot of catch up to do in terms of play, being home and relatively healthy, and getting spoiled by her mama who had been working until then.

I guess I had to know.

I am glad I learned and overcame my fears and biases. Ellie is not just in any special ed class. She is in a great special ed school. I am glad I looked and fought and in the end did not have to fight as hard as I thought due to the new town Special Ed Director. Being involved with this new community and seeing the love and care they give to all the children makes me well up every time. Today I almost cried three times in seeing Ellie laugh, be respected, and seeing the enjoyment on her teachers and therapists faces in interacting with her. Before we found this school I thought there was no where for Ellie and that made me sad. Seeing that we found a GREAT place for her makes me cry with relief even as I write this. What can I say, I cry at weddings too.

Seeing the staff meet Ellie where she is at and seeing them respect her completely I am so glad that we are there. I am glad we found the right place even if we took a wrong turn along the way. I wish I could have spared Ellie her stint in the integrated classroom. But I also can’t go back.

For other parents facing all of this, here is some unasked for advice. Keep an open mind about integration and non-integration. The key is finding the right environment for your child. It may not be the public school. It may also not be the special needs class an hour away that is within the collaborative. But keep looking. Ellie’s time out of school was good for her. It was good for me as well. We made tons of progress. So much so that I truly feel she is ready to be in school. She is ready for more than I can give her.

Stick to your guns about the really important things. And hear the little cues from life all around you telling you if something isn’t right.

Three Times A Charm

Ellie completed her first week/third day at New School. Today there was no crying or even power naps (though a power nap attempt was made right at the end of her day there around quarter to noon).

She replaced these with lots of attentive gazes and smiles and laughs. She had her new PT today who tried her successfully in a bolster sitter. It makes Ellie work her trunk will sitting. Ellie did amazing. She was introduced to many other new things today and I am happy to say that she took them all in with quiet attention.

She did get tired out. It's still all new, it's still a bit over stimulating. But she was happy. She was happy when she woke up from her nap and happy when I lay her down to sleep.

Second Day at New School Report

I am thrilled to report that Ellie did NOT cry for the first hour or at all for that matter today at her new school. Which is great for both of us. I am telling you, Ellie's cry is so pitiful and cute and the lip comes out and quivers. Her crying could melt the coldest of hearts.

Today she bonded with one of the classroom teacher's aids who is awesome. She also had her first Occupational and Speech therapy sessions. Both therapists were EXCELLENT. I am exuberant because it has been a long, long time since Ellie had either of these therapies.

Today instead of crying Ellie did a lot of laughing. Her laugh has a profound effect on everyone who hears it in the opposite way her crying does. You can't help but laugh. It was balm to my heart that this is a place where she can go and laugh and play and be proud of herself.

It's so wonderful that good things are happening for her there. It's a good problem to have that I actually feel that I could get in the way there versus needing to be there to protect her.

Ellie's first day at her new school!

Oh my. We are getting ready. The pigtails are out in full force. Mama is anxious. Will it be as good as I think? Will this be the thing that changes Ellie's life for the better? What if it fails to meet my expectations or is bad? My gut says it will be good.

Wish us luck!

Will post pictures later today.

Dénouement

Ellie is in her nap after a busy day at school. I can’t say she loved it as much as I did. But I can say it is a great place and that I think she will love it eventually when she get’s used to it. That said, she cried the first hour so I don’t know how long it is going to take for our Lady Muck to love it. I think she was crying mainly due to her auditory defensiveness and because it was all new, new people, new place, new kids. But the school and staff are fantastic. She had her own space. Everyone she met signed to her and waited for her response. I can go on and on about how great they are but I only have a minute. Suffice to say it’s worth the effort.

After her first hour of crying and a 10-minute power nap she cautiously peeked out from my lap to see what the other kids (all three of them) were doing in circle time. She smiled at some of the many staff that came down to see their newest pupil. As her teacher said, she was the Mayor of the school that day and will be for a while. By the end of the day I think she actually had a little fun.

The pics are of her telling Mama, “Let’s go!” and of her showing New Teacher how to spell the word "opposites" and show her pictures of her family.

Breakthroughs do happen

Last Friday Ellie and I went for one of her regular visits to the communication enhancement clinic. We have been going for a while and though we have tried everything we were advised to we have had minimal success. The reasons are many and varied. And the expert there had very little success in engaging Ellie. Her sensory integration issues, especially auditory defensiveness, made the use of “his” toys very difficult. Ellie was having none of it as her Irish Auntie Rie would say.

But still we kept going and trying every six months when we could get the appointment. I took pictures of all her toys, printed them out, cut around them, put Velcro on the back, organized them in a three ring binder which proved very cumbersome to use with Ellie on my lap and it was too hard for her to turn the pages herself. She did love the book and taking the pics off the pages and crumpling them in her hands. This was great fine motor work but not so good on the expressive communication front. She does request that book. She is looking for a way to tell us what she needs.

Then we tried the picture symbols that were mainly black and white. We had less success with them. She was less interested in them and they are kind of limiting in that they don’t allow for many shades of gray present in human wants, likes, dislikes and needs. So after creating hundreds of them and laminating them and putting them into a smaller notebook via Velcro, etc, etc that just did not work either.

This is why we resorted to spelling stuff on the Doodle pro. I also use my hands to help her make choices as described here. I also know what an “ah” means compared to an “uh”. But that does not help her with other people.

The visit to the communication enhancement clinic before this last one our expert was having minimal success and getting a little frustrated. I am sure he thought I was totally deluded when I told him all the stuff Ellie could do. In desperation after all his attempts I pulled out her plexiglass letter board we have used for spelling. Tiffany made this for Ellie and it is the precursor to a light board where the person only has to look at the letter to input it in to a computer that will talk for them. Ellie is really good at this. So I showed them how she would visually find the letters I would say to her favorite words. Our expert, who I gotta say is great, tenacious and loves the kids he helps, was impressed. It was the beginning of the breakthrough.

Last Friday we woke up late and I almost did not go to the appointment. I had been a long week after a hospitalization and stressing out about the floors not being done in the wake of our visitors. But I am so glad I took her.

When we arrived in his office there were letters everywhere. Ellie was immediately engaged. He had made two, one large and one small, *Nyloop boards with laminated letters all over them. Ellie was reaching for them. And this time he did not use “his” toys but Ellie’s. He even quickly printed pics off this post and used them with red and yellow backgrounds which Ellie was immediately into – way more than the white background ones. He figured out how I could make a book that Ellie could use and I could use with her. I will take a pic when I have completed it. It was all very exciting. Ellie was reaching when he asked her to make a choice and was delighted when he took her hand, gently and hand under hand to help her pick yes! He made a big deal of her picking YES.

If I hadn’t been holding I would have loved to take a picture of Ellie’s face when she would pick YES and he would go nuts. She was so proud of herself! This was the first time he had seen her in full on, happy, enthusiastic want to learn, learn and learn some more Ellie mode. He had only seen her in scrunch, get that foreign object (you gotta be kidding me if you think I will play with that) as far away from me as possible mode. I think the delight went both ways. Ellie is like the brightest ray of sun when she laughs and smiles.

He then astounded me by mentioning that he had been given a small grant from a mother of a woman who had died of cancer. Before her death, this young woman, Mary Kay had become a disability activist. In her own declining state of health she began to understand and fight against the incredible issue of lack of access for the disabled. I find this so inspiring that she started fighting for others in her last days on earth.

Mary Kay’s mom after her death then purchased some assistive technology that was to be given to someone who would be really helped by it. One of these things was Mayer-Johnson's Boardmaker @ Home. Which is not cheap. Our expert gave it to us. It is going to accelerate our ability to make her communication book with the right colors for the background. It will allow us to create a library of pictures and easily put them in different formats. It has a built in library of picture symbols as well.

It just goes to show, if you stick with something long enough, the answers will come. I will post her new book as soon as I make it by next week.
*Incidentally adhesive backed loose Nyloop fabric is difficult to find but so useful if you have a kid with cp. I got a big roll of navy, adhesive backed Nyloop from Bellows Products, LLC. You can find them here or call them toll free at 866-389-5616. They are in Providence RI and will ship. Very reasonably priced as well.

Ellie's Guest Book

I saw my first blogger guestbook here . I love these guys. Look at their picture. They are unbelievably strong and positive and their girls are inspiring. Billie's posts are so thoughtful and her writing is great. That's my shout out give credit where credit is due opener because I am stealing their great idea.

I like the idea of a guest book. A place where chronic lurkers can come and say hello once and frequent commenters can impart words of wisdom on any topic. I appreciate all the great wisdom, advice, and encouragement I have received from so many of you via comments and email. Thanks for all the links and information too.

I will share this blog and this guestbook with Ellie one day - well most of it. So think of this as a place to say hello, that you stopped by, and anything else that may have inspired you in doing so.

Thanks for being here and reading a tale or two.

Ellie, me and Dave at the Dublin Zoo

A Slice of our life before 9am: Ten Beautiful Things

1. I wake up before Ellie. It’s 6:20am. The house is quiet and filling up with early morning sun. I feel good. She slept through the night. I peek in at her. Her arms are out wide. Her breathing is steady and the deepest I have seen it in awhile. She looks content. I think I can actually hear her growing. There are no dark circles under her eyes. It was a good night for her too.

2. I tip toe downstairs and measure out her meds; Protonix, Cisipride, and Zantac to battle her reflux and Depakane to keep the seizures at bay. I drink water. Every day I get a bit dehydrated because she keeps me hopping. I forget to look after myself. This morning I drink two 10-ounce glasses worth. My body thanks me. I am bargaining with myself in doing this because I know that for every cup of coffee I drink I need to replace it’s diuretic effects with two cups of water. I am multi tasking – quench the dehydration of the night and get a jump on the two cups of coffee I will drink later.

3. The coffee pot sputters and gurgles and spreads its aroma across the room over the unfinished floor that is soaking up the morning rays. I take this time to contemplate and take some deep breaths to get ready for the day. I am again grateful that she slept through the night. My contemplation is distracted by two things: the fact that I know I only have one or two moments more until she is awake and needs my complete attention and thoughts of Dave. He is out of town. Working hard in the middle of some industrial wasteland, a long way from Boston and sunny LA. He had to leave just as Ellie got home from the hospital. The first night he was gone she woke up at 11pm. Nothing would console her for 2+ hours because she wanted to snuggle up with Dada. Mama just would not do. A tribute to how great a dad Dave is. That makes me smile. There are so many people in Ellie’s life that she is far away from and when she sees their picture she let’s me know she wants them. She puts her thumb on them and says “Uh!” and looks around like the person is hiding. Very cute. Heartbreaking.

4. She is awake. I can hear her tiny voice on the monitor. She is babbling away mostly vowels and very few consonants. But I know she is asking for me. I go in. “Hello! Oh, it’s so good to see you.” She smiles, eyes half open, kicks her feet and waves her arms in dystonic reverie. I pick her up. Bring her down stairs. We land on the couch. She immediately starts looking for toys to play with. I tell her good morning. Ask for a good morning hug. She obliges by burrowing her face into my shoulder. I sign thank you. She scrunches. Not getting toys fast enough. She puts her right arm over her eye. Her whole body scrunches inward. I ask her, “Are you grumpy?” She looks at me. I hold out two hands. Wave the first hand as I say, “Is Ellie happy?”. Then I wave the second hand in front of her and ask, “or grumpy?”. Ellie picks grumpy. I say, “That’s ok. Sometimes people get grumpy in the morning. How about you sit in your Bumbo chair?” More scrunching. I know she wants to play from her favorite platform, mama’s lap. She is too heavy to carry back and forth to the kitchen so I need to put her in her Bumbo. There she can be upright, clear her fluids and stuffy nose as well as play. I put her in the Bumbo anyway. As soon as I do I ask her, “Do you want to play Globe with me?” At this she squeals, LOUD, "EEEEEEEEEEEEEEE!". She has this maniacal look in her eyes. Her eyebrows arch in perfect triangles. The squealing continues only to be interrupted by dystonic arms flung out to each side. She throws her head side to side. This is then followed by Ellie pushing up with her feet, which makes her bounce a little up and down in her seat. She can’t move and vocalize much at the same time. After this she stops moving and squeals some more. It’s very cute.

This is what Ellie does when she is excited and happy. It’s a tremendous way to say YES!

5. I become Ellie’s hands and arms so that we can do some imaginary play Ellie style. Her Pooh toy has to dance on top Globe about 500 times. She grabs a cloth napkin nearby and tries to put it over Pooh. This indicates she wants me to cover up Pooh so she can find whom that is dancing a top Globe. We do this many times to many squeals of delight and dystonic arms and head. Then she reaches for her Doodlepro saying “uh”. I get it. Place it in front of her. She reaches, grabs the pen and moves it toward my hand. I ask her, “Do you want to spell things on Globe?” Smile and another “uh” while leaning forward. I ask her, “Ellie, where is this?” I have written AFRICA on the Doodlepro. Before I am even done writing it she is turning the globe around to find Africa. She puts her whole hand on it and looks at me with an expectant smile. I praise her for finding Africa. She then wants to spell Africa Ellie style. We do this for each continent and the poles and the equator. She has found a new part of globe and puts her thumb on the north south east west compass. She looks at me and says “ah” with her right eye brow raised. That’s her facial reaction when she discovers something new. It’s so cute. I tell her about the compass. Then she puts her hand on Doodlepro. She wants me to spell the word compass. I do and she is delighted. She then puts her thumb on each letter of the word. I read each letter she touches. I go at her pace. “C. OOOO. MMMM. P. A. S. S!”

This is how Ellie learns.

6. In between all of this I have given her Protonix, then 20 minutes later Cisipride. Now it’s time to change her diaper, get dressed and get her AFO’s on. She tolerates all of this because I have propped her up on a Boppy. Big Teddy bear is holding up Doodlepro for her. Raggedy Ann is keeping her company. She is examining Raggedy’s red hair and pulls the pen from the Doodlepro. I know she wants me to write. I do. I write Red Hair. Ellie is delighted. We talk about Raggedy’s hair, face, clothes. We look to find where it says "I love you" in a heart over her “heart”. It is new that Ellie is more interested in these non-musical, non-mechanical toys. She takes Raggedy in by both hands, one on each side of her head and starts to babble to her. This is new too, using both hands so well to hold a toy up. It’s major progress. I am happy to see her doing imaginary play all on her own. I ask her, “Is Raggedy your friend (I sign friend as I say it), your girl friend (signing as I go)?” Big cheeky grin and then back to babbling at her girl friend. Getting dressed can take 20 minutes. Ellie looks happy. She has stopped playing and is looking at me contented. I ask her as described before with my hands, “Are you happy or grumpy?” This time she picks happy and smiles. I say, “Oh that’s great, me too. Are you hungry?” Big dystonic reaction. I ask her, “Want to eat some cereal?” Her reply, “Ah” reaching for my hand wanting me to pick her up.

7. I do and hold her close to lift 24.5 pounds of her. She does not help or hold on. She fearlessly wiggles to turn round in my arms to face forward to see where she is headed. I tell her we are going to the table to her big chair (kid kart express). That she can play while mama makes her cereal. I strap her in her chair and put a blue non-slip mat in front of her on the table and ask her which toy she wants by giving her a choice of two. She picks her Sing and Discover Piano. She sits facing me as I make her food.


8. I prepare her breakfast, organic multigrain instant baby cereal in organic rice milk, and my own, Pete’s Arabian Mocha Java coffee and toast. She plays this little rif that comes if you press the elephant button a couple of times. She knows I like it because I always sing it back and tell her it’s jazz. I echo it back to her now to her delight. She plays it again. I sing it back. Then she plays another song that I sing with the toy from across the room. This is her way of communicating with me. I wonder if she has a future as a DJ.

9. I bring the food over. The struggle begins to get her to eat by mouth. I try to gently do her mouth exercises. I say, "Warm up Ellie's mouth!" Even with the sound effects and trying to make it fun she is having none of it. I ask her if she wants to do them on mama. She grabs my face for a moment and then tries to sit up on the table. She loves the “wood” table. Wood and table are new things she has learned and is far more interested in them than eating. She is hungry but just won’t focus on the food. She is practicing all manner of avoidance. It’s hard. It’s frustrating and sad because last May she was eating most of her food by mouth. Now she refuses all food. I think I must take her to some sort of feeding clinic. I give up after 20 minutes and give her the bolus through her g-tube and her Depakane with it. We read and I eat my toast and ask her if she wants some. Nope. Sigh.

10. Out the window I see a glorious sunny February day warm enough to go for a walk.

Even bigger picture

Before I knew about the field of organizational psychology I quit being an artist and started off to find a career I could feel good about making money at. On this search I got a job at a group home for juvenile delinquent boys ages 13-19 called Our House. It was an amazing place started by a former flower child and innovative peace loving thinker who devised a method of holding the boys accountable for their actions that did not involve any physical take downs or restraints. The doors were not even locked ever. It was a great experience. I started a GED program and taught art and Art and Math classes as well as set up a computer room for their use and to learn basic computer programs. They were usually with us for 4 –6 months and during that time you would see them get to become kids again.

The sad part was that they would be sent home to the same drug addicted parents or rough neighborhood and most of the time you would hear that they were back in lock up or worse. I realized it would burn me out to be working at this level for the long term and decided that I wanted to work with whole systems to change them for the better.

The focus on the big picture of our society’s mistreatment of the disabled seem to be missing from the conversation that starts with the question, “Should we resuscitate preemies and who should decide?” and travels through to asking, “What happened to them after age 2?” But is has not yet landed on my question which is,

“What if society actually supported and accepted its disabled as a valued and important part?”

This is a discussion of isms.

Disability is an ism. The fact is that society does not tolerate isms well, especially those in the minority. It balks at those that do not meet up to aesthetic standards of beauty and usefulness. Of course these aesthetics are shallow and ruled by ignorance and an assortment of negative drives. A critical cause behind outcomes like the case of Ashley Treatment occur because society is in general not supportive of people with disabilities in just the same way that corporate America is discriminatory against women and people of color. Now of course there are tons of people who are supportive of the disabled - but on the whole society is not. I know this because when people or organizations are really committed to something and supportive of it they act on it and put money into it. Like I said, many NICUs are the star earners/cash cows for hospitals so the bias is to keep em running and keep expanding our knowledge of neonatology – which is a great thing. But it could also explain whey there is so little hoopla and understanding of the outcomes of former preemies who are at home and needing support and not bringing in huge sums for healthcare providers for critical treatments. I have found that I have to fight insurance for the chronic conditions that Ellie has. Cerebral Palsy for instance is a chronic condition and requires lots of equipment, which I have to jump through a lot of hoops to get.

I have also found that funding for early intervention programs and care attendant hours for children with special needs whose parents are in great need of some help is very limited and getting ever more so as congress cuts back each year. Why is special education in mainstream public schools such a problem (for a great blog on this check out Charles Fox)? Most school districts don’t want to pay for special needs education and nickel and dime and under deliver the child and parents ad nauseam.

It seems that the amount of support diminishes as the disabled person ages. There also seems to be a hierarchy of special needs that get funded. Blindness gets the most money and then deafness. I think brain damage and cerebral palsy are at the bottom. So the more disabled you are the less help you will get over the course of your lifetime.

There needs to be discussion about changing the system that has a dropping continuum of support based on the assumption that people with cp can only be helped up until age 3 or 4 or in child hood. The assumption also holds that the disabled have nothing to contribute and that they are a drain on the system. God this bothers me and couldn’t be less true. I have read so many blogs by disabled people who are absolutely brilliant but can’t get a job to literally save their lives. It’s so ass backwards.

It is the ignorance and discrimination towards the disabled that sets the back drop for the discussion about preemies and their outcomes whether it’s acknowledged openly or not. I think it is why the preemie myths prevail because we don’t want to deal with our ignorance on the whole of disability. I read on one blog of a disabled person that disability was most simply a matter of equal access to all parts of society. If there were equal access there would not be disability or racism or chauvinism or any number of isms.

Also it is important to realize that people with disabilities have a lot to offer the world and are often not given the chance.

It’s the mindset that needs to change.

When you have a child who then turns out to be disabled, your mind set is forced to change. And of course you love them. So there you are, loving this person who is different from most of your friends kids. But you think they are great and they are and they teach you so much and you change at the deepest level. This is the context I am coming from when I discuss Ellie and how great my life is because of her. Because of her I have learned a new language and with it gained an entirely new perspective I could not have understood any other way. I am so much better even for the wear and tear.

The scary part is that the backdrop for Ellie’s life is a world where the disabled are discriminated against - a lot. And that is terrifying to me. I want people to read our blog and be able to understand that disability has many faces and many gifts. This is not trying to make lemonade out of lemons – it’s just the truth.

Home

Home at last

Here are some pics of her from the Hospital. I think her head cloth makes her look the girl with the pearl earring, sans earring.

The good news is, it wasn’t seizure activity. The bad news is, that it is probably an issue with her eye muscles which we will be exploring with her ophthalmologist. More fun. Glad we are catching it early and so, so, so glad it’s not seizures or a shunt malfunction – both much worse things.

We came home and Ellie took a two-hour nap on Dada on the beloved couch and then we popped her in the also beloved B.A.T.H. Bath. She was delighted and a happy girl having Mama’s and Dada’s full and lavish attention. Her eye is still a little wonky at times but just knowing it’s not her brain seizing or getting injured due to hydrocephalus makes it a lot easier to handle. I worry for her vision – she is so visual. Will keep you posted.

Hope versus Facts from the Hospital

I began this post after thinking more about the current discussion and am finishing it at the hospital while Ellie naps. Her head is wrapped in gauze, underneath which are an array of metal pieces glued to her scalp. She just completed a night long EEG. She was having some neurological symptoms and her pediatrician sent us to the ER. The EEG was to try to catch these symptoms to determine if they were seizures or not. Not much luck but we are still waiting to hear the results of the EEG reading. The good news is her shunt is working fine – thank god.

In light of the discussion about hope and facts, here’s a story. Our roommates in the hospital are a father and his former 28.2 weeker who had a grade 4 IVH leading to hydrocephalus and in the course of events she contracted a devastating meningitis during a hospital stay. She is in surgery as I write this for a shunt revision. Her father is here and hands on and great with her. We were swapping stories. He lives out of state and said that when she was born his daughter’s pedi there released her from the hospital and his care saying she was not worth treating. So he and his wife and family drove to Boston and went to the ER here and that is how they got her cared for. I try not to swear on my blog – but WTF?! Their local doctor said it was against his ethics to treat their daughter. There is a law nicknamed the born alive law that makes this illegal - I think. I read that on the comments of a recent post in the preemie experiment. I will add the link in soon. It’s never simple is it?

Someone who recently found Ryn Tales did so through a search entitled hope and preemies. Yikes. It led me to a post from a mother of a 25 weeker who is two now and, per mother’s report, totally caught up. She said that hope sustained her through that experience. I believe her. Hope sustained me too after the shock wore off.

That post got me thinking about the amount of hope available to parents during a traumatic, unexpectedly early birth of a child followed by a prolonged NICU experience. In all honesty I want to clarify some things that may not be apparent from some of my comments on other blogs and from this blog. Though I meant every word in those comments and in my posts here I have not taken the time to detail our whole experience so that people reading our story would know the context of it all. I don’t know that at the moment I care to document here what happened in sequence. I have to tell that story so often to new doctors we encounter who take clinical notes while I tell the tale of how my baby’s universe was torn asunder and she fell into an abyss that she is still struggling to get out of. It’s painful. Retelling requires a certain amount of reliving, which is best to keep at a minimum. I am actually not that strong of a person. I don’t think I could do it all again.

That said, I don’t want to take away the hope of parents who might have found this blog from some NICU parent room while they are frantically searching to make sense of things and get up to speed on this new world they have entered. So here is some clarification for those of you who might have stumbled into my little universe.

I want to make it clear that the doctors in the NICU Ellie was born in were either neutral or doom and gloom – especially in the early days. They did not want us to have false hope. And for that I am glad. Having spent 133 days in the NICU I can also tell you there are phases to that experience ranging from shock and adrenaline to denial to acceptance and more shock and adrenaline thrown in for good measure every time something scary happens like a surgery or NEC or many of the other horrors preemies face in their NICU course.

During our NICU experience I, being at the very end of my Ph.D. program in organizational psychology, which included a good measure of social statistics, noticed a startling lack of statistical facts regarding outcomes of preemies. Dave and I went in search of them on our own but what I found was very disappointing in terms of statistical power. We read some in the neuro texts we bought, but being a psychologist trained in social statistics I was so UNIMPRESSED by the lack of power there. It seems a lot of neurology regarding preemies with brain bleeds is based on only several instances (sample sizes as low as 4). That was also 4 years ago. Hopefully the latest additions of the texts contain better info.

In the NICU we also participated in a study on cerebral spinal fluid to detect PVL by the same neuro doc who re-injured Ellie’s brain. We participated in the study because we felt if we didn’t they would hold it against us and not treat Ellie as well as possible. That is how desperate you get in the NICU and how close your child it to death. When the study results came back the doctors – this was two months in – urged us to sign a DNR. This would have meant that we let Ellie drown in her own secretions. We were horrified. I also believe that the neurosurgeon there wrote Ellie off and on some unconscious level gave her sub par care in the form of not checking ALL her ventricle to see if the shunt was working – which it wasn’t. Then to fix it he did an experimental surgery that only served to injure her brain more so that now her eyes and vision were affected. When he gave me the results of the study I read the statistics and could easily argue that they were very weak.

My point in bringing this up is I wish we had heard more substantial facts in the NICU. We heard a lot of speculation to the negative from the doctors though the really good docs did admit to not knowing. The “I don’t know” comments actually gave me the most hope and I so totally to this day appreciate their honesty. I thought, hey if they don’t know, I will just have to hope for the best. Which I did and still do as that is also my job as Ellie’s mother. If I don’t believe in her and set the bar high, who will? This is not to say I don’t realistically deal with her where she is at and love her for who she is. But at the end of the day I believe in her and have hope for her.

Lastly here are some different types of Hope:

Gut level knowing hope: This is great when it comes though is prone to second guessing by the mind. It’s your inner intuition letting you know to have hope and that you will be able deal with the outcome. Please do not confuse this with that profoundly different cliché that states “you are never given more than you can handle” which I think is total bullshit. If that were the case you wouldn’t hear those horror stories of mother’s killing their children.

Hope from denial: it’s not realistic but keeps you from cracking up during times of great stress. When it comes from within it’s a survival mechanism important to maintaining your psyche. But like all the phases of grief you need to pass through it. I have noticed the grief cycle has many little cycles along the way especially in a life with a child with multiple disabilities. It’s not like you face denial once and have done with it. No, I have faced it over and over with every new understanding of Ellie’s issues. For Ellie’s sake I have to make myself move through the, “No she does not have seizures. No, she’s not a seizure kid.” To fuck sake, she’s got seizures let’s figure out how to deal with them the best way possible. Sorry for the swearing, but it was a long night. It’s never static just like cerebral palsy is not static. (It’s not degenerative but it does change it’s presentation especially when a child grows. Nothing static about that.)

So to the doctors who told us, “well at least it won’t get worse” that is totally not true. Sometimes it does get worse and there are new difficult things to deal with all the time.

False hope: This is the worst especially if doctors do it. It’s a major error and only sets you up to deal with the pain of reality at a later date and make mistakes in the present.

Write you off hope: This sucks too. It’s when someone tells you something positive to avoid telling you something negative or to avoid dealing with you at all. When Ellie was born I can’t tell you the number of people, some I thought were friends, who told me, “oh, I know a preemie and they are fine. She’ll be just fine.” And then you never hear from them again, because you see they are immersed in the preemie myth and don’t need to worry about you anymore.

Realistic hope in light of the facts: This is the best and what I tried to create for myself during the NICU course and now in my day to day. I then temper the difficult facts I learn with a wait and see attitude to keep my sanity. I want to be aware of the all the things Ellie is facing so I can help her. “Watch the baby!” Is what my favorite NICU doc told us. Thanks for that one D. I still am, and she is beautiful.

We had a ton of very competent help in the NICU. The majority of the doctors were excellent, there were many amazing nurses and therapists who became part of our little family and we met some of the most courageous and admirable parents who have now become life long friends. I felt too that sometimes the doctors come to adore some families and babies and want good things to happen to them. This is the human condition. I’d take a doc like that any day over the docs who wanted us to sign the DNR.

I don’t think it is for the doctors or the state to say who should be saved or not. I think it is the parent’s choice. The problem comes in when parents don’t have adequate information to make informed choices. This murkey ethical pool is further convoluted by prevailing preemie myths which also add great pressure and difficulty on parents who need make life and death choices for their child especially if the choice is to let the baby pass away.

Deepest Fears, knowing too much, positive thoughts

I have been blog hopping lately to some new places in the blogosphere. It’s all Jacqui’s fault for making me think about this and having such interesting friends/links.

The journalist reporting on the story of the 21 weeker is either misinformed, receiving bad information or not understanding the information s/he is receiving to imply that the child will come away from the whole thing unscathed.

I have been reading more preemie stories here and here, here and here. I am inspired by the mom’s in each of these blogs as well as by Jacqui. It’s good to see how other parents are confronting the issues we face. I learn a lot from each of them and take courage in their tenacity and humor in the face of the unknown.

I have also been reading neonatologist’s blogs here, here, and here. I am glad to be aware of them. But after a few days of taking in all this new information in this new vista of the blogosphere I have discovered I am quite full. Full as in you have just spent a couple of hours in la Louvre and need to lie down. Too. Much. Information. Must. Shut. Down. Now. System. Overload.

Here is my question to my vast readership of 10: Is it bad to know too much? Is it good to follow these debates and be so informed, especially since I can’t change the past and am committed to the path we are on? Is it? I would love to hear your opinion on that.


But – gaaaawwwwddd. Reading these discussions scares the crap out of me. And for the record, I think doctors and the press could do a heck of a lot better job at painting a true and detailed picture of sequalea of hypoxic-ischemic encephalopathy and of prematurity. But once you are where we are, four years plus in, is it really good to know so much?

I am blogging about this however because there are some major problems when it comes to prematurity.

#1 is the myth that preemies mostly do ok and actually have gifts like being extra musical, extra smart, extra wise. We heard all of that crap in the NICU. I have never found any study to bear any of these out. I have mostly seen many preemies with mild to severe issues especially cerebral palsy. Other supporting myths for the greatness of the preemie experience are examples of famous preemies like Albert Einstein. I have no idea if that is true but if it is he is a very rare case and he most likely had
Asperger’s Syndrome.

#2 Because of #1. preemies and parents who do not have good outcomes are certainly not spotlighted as much in the media or even thought of as important voices in hospital systems and their parent support groups as are the parents of preemies who did great in their NICU course and then go on to "catch up". Why are we so unrealistic about preemies? Maybe it’s human nature to want to focus on the positive examples and ignore, deny, shunt away a reality that is not so positive. Maybe insurance would not just give NICU's the green light when it comes to their tiny patients of the statistics were better known?

#3 Because of #2 many parents of preemies don’t get the support they need from their communities. When Ellie was born I can’t count the number of people reassured me all would be well because they knew of an adult preemie who turned out just fine. They did not mean this is in a "so what is your problem way?" but it did give me a lot of unrealistic expectations followed by guilt over the fact that things were clearly not just fine. Also, the head job #2 does on the parents can be debilitating in terms of them facing up to the reality of their child's issues and even feeling like they can ask for and do deserve help.

There it is. How does sadness and fear of the future and the current fatigue (the GSTTN have been kicking my ass this week) help me get through the day? Not at all.

Enter positive thinking 101 survival technique. An acquaintance of mine just posted an entry on another blog we both contribute to about his happy life and mental discipline of replacing any and all negative thoughts with positive ones, for example something he is grateful for. This in theory and in practice is an awesome thing to do. I’ve known him for a long time and he always exudes this sense of self that is both uplifting and rock solid. Discipline is the only ways to achieve that as this world is designed to separate the individual from such things.

Here is my grateful and positive thought that I am going to use to remind myself in the face of my deepest fears regarding our life and Ellie’s future:

I love these two lovely and amazing people that love me back every day unconditionally. That’s alotta love going on. It’s pretty cool and something I never had before on a daily basis. On top of that they are both really cute and funny and sweet and even think I am great. Life before them, though it looked pretty successful from the outside (education, job, career, health) was in actuality pretty lonely on the inside.

And this is not a rationalization. For the few friends of mine that read Ryn Tales and know my background and travails growing up it will make the most sense.

I hope this post offers some resources to understand the true outcomes of prematurity. I also hope that anyone reading this will understand, that having a preemie who then becomes a child with multiple disabilities is not the end of the world. It is entering into a new one with new challenges and many things to learn. That is the, please don't feel sorry for us part. And though I would not wish the experience on anyone, you could do it too if you had to. Finding that you have that kind of inner strength is pretty incredible.