Posts made in February, 2012

An open letter to doctors

Posted on Feb 24, 2012 | 13 comments

An open letter to doctors

If you are a doctor, I would really appreciate it if you read this. If you read nothing else of the post, take this away: before diagnosing a child, review her history, look her parents in the eye and don’t give them “scripted” answers. Some of you call it “professional distancing” but I call it heartache. The setting for this post is Moorfields Eye Hospital, but it could have been any hospital. I’ve had doctors dismiss May and her future at Detroit Children’s Hospital, King’s College Hospital, Guys and St Thomas’ and their children’s hospital, the Evelina. 100% of the hospitals May has attended to be exact. Not every doctor. But certainly one in every specialism. May had a brain scan yesterday to determine if what her eyes see, reaches the visual cortex of her brain. I expected it to be uneventful, which isn’t such a bad thing given May’s history with appointments of this kind. The prep and exam take about an hour. That’s a long time for a baby, so I asked the technician to hold May for a moment so I could situate Ieuan for the duration. He capitulated, so I added, “The thing is, May can’t sit on her own.” “We aren’t trained to hold children. Maybe she could sit in the sit and I could watch her so she doesn’t fall.” “She can’t sit,” I insisted. “Well, what do you think is the safest thing for her?” he asked. “For you, to hold her.” And I literally put May in his arms and let go. He sputtered, “How do I hold her?” He was already holding her. “Like that,” I said sharply. I placed Ieuan in the stroller to play and, then, I added, “You know, you are going to have to learn to deal with situations like this. May isn’t the only child you will meet who needs assistance.” I wasn’t expecting the results to be good, but when I saw the doctor who was delivering them, I knew it was bad. Not because of the results, but because the doctor was under 40 and she was too rushed to meet my eyes. Doctors like her whip through examinations, make broad – generally negative – assessments based on the briefest of investigations and aren’t bothered to read through the notes. Her opening gambit was to refer to an earlier examination that day with another dismissive, young doctor. She said, “So, May can’t follow light.” To which I answered, “She can, but not consistently.” Five minutes later, “So, my colleague made a note that May can’t follow light.” Me: “She can, but-” …you get the picture. Then, she started to make an appointment for a scan for May. “But, she had a scan,” I said, “this morning. You are meant to report on the results.” “Oh!” she said, without apologizing, finally skimming her notes. “Let me see. Yes, she did. Well, it was inconclusive. But, we aren’t expecting much from May. We can book another scan, but I can’t say that it will tell us much more. There is nothing we can do for her.” And, just like that, she sledgehammered my heart. I held back tears, while she spun around to make a phone call, completely unfazed. This was normal. She used words like “nothing” like she’d said them a million times before. With all the arrogance of the truly stupid. Spinning back around to face me, she announced that she would go get the Professor for the final part of the clinic. “Wait,” I said. “Before you get him. I need to...

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What is happening to the NHS?

Posted on Feb 22, 2012 | 1 comment

What is happening to the NHS?

The Coalition government is at it again. They are pulling the rug out from under the Disability Living Allowance. Ripping the Mobility element from many needy people. Making disabled families who are also very poor, poorer. If that wasn’t enough to make a person want to charge Downing Street and literally disable David Cameron, now they are pressing through their National Health Service reforms. Pressing ahead despite most of the NHS begging them not to. Despite most of the professional bodies associated with the NHS criticizing it. Despite patient groups and people like me, on the frontlines of this battle – and I could go on with war rhetoric. It is an apocalyptic change to the NHS. If you are anything like me, the reforms sound absurd and complicated and not thrashed out in the least. I can’t work out much details at all, while at the same time, all I hear from the government are words like change, reform and competition. What of the details? How do they plan on achieving these, and is it change for good or just for its own sake? So, let’s put it in terms we’ll understand. How will the reforms affect May? Recap on May’s needs: Equipment – lycra suiting, bath seat, supportive seating for eating and play, standing frame Hospital visits – neurology, vision, seizures Community help – physio, OT, visual therapy, Social Services OT It is clear that May is EXPENSIVE. She costs serious money. And, no doubt the government would like to cut down on the tens of thousands of pounds they spend on her yearly. (Her lycra supergirl suit for example – £500/3x a year). The government wants to remove the Primary Care Trusts that manage the money and make decisions for an area. In their place, they want GPs to manage their own money and contract out as they see fit. This is all about improving the system so it meets local demands. What this means is that GPs will not manage their own money. They will contract that out to private firms. Of course they will! They are GPs not managers. They want to help patients – as they should. So, part of the money will already go to private companies who will profit off the NHS in exchange for managing the funds of GPs. By focusing on local concerns – let’s say a certain area has more cases of lung cancer, for example – individual, complex cases like May could pay the price. Like I said, May is expensive. No one is going to profit off her. They are going to lose money big time. Will this mean that GPs encourage us to find a new practice? Or, that they simply say it is too difficult to source May’s next lycra suit? I’m already having these kind of conversations and it is only going to get worse. The Royal College of General Practitioners said it was “concerned that some of the types of choice outlined in the government’s proposals run a risk of destabilising the NHS and causing long-term harm to patient outcomes, particularly in cases of children with disabilities, those with multiple comorbidities and the frail and elderly.”(wikipedia) Like most policies spun to appear better for patients, the government is short-sighted. They are so desperate to save money now – and make money for private companies AKA “opening up competition” – they forget that they are creating a deficit for themselves later. When May, and children like her, can’t eat independently, sit independently or any number of other basic skills, that will be lifetime...

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This week I’m… singing scales.

Posted on Feb 18, 2012 | 2 comments

This week I’m… singing scales.

My biggest fans. And yes, my voice merits this level of adoration. Just call me Julie Andrews. I’m no one trick pony. I’m a triple threat; I can sing, dance AND act. Okay. I can hum a tune, drunk dance AND act nasty – but only if you park in a disabled spot and you aren’t disabled. grrrrrr. Thank goodness for children. They think you are God’s gift to entertainment. My baby, Ieuan, adores me in much the same way as the Beatles experienced on their first tour of America. And, May can spend hours, literally, singing with me. See! She thinks I can sing! Our concerts consist of “ahhhhh” hitting the same note over and over again. Sometimes, our collaborations vary with me patting her mouth or flicking her lips with my finger making “ahhhhh” into a pseudo Indian war-cry. She loves it! Plus, we are almost always cuddling while we do this. We both love that! Tonight, I thought I’d go for some extreme singing and pull out that old Julie Andrew’s classic Do-Re-Mi. When that got no response, I cut out the middle man and just did scales. In one of those miraculous moments that mothers like me wait months for, music therapy paid off tonight. I set to moving up the scales. May remained on the lower end of the octave. When I reached the top, she stopped. She listened as I screeched through the higher notes. Then, she laughed herself silly. Now, you might say that she had a revelation about her tone-deaf mama. However, as I sang my way up and down the scales once more, she started singing with me, still on her lower note. As I peaked shakily at the top, she changed her note and squeaked along with me. I stopped. She laughed herself silly again. I did it again. She did it again. May is listening and trying to match my sounds. She is a gorgeous little diva in the tradition of Mariah Carey. Better than Mariah, because May is testing out a new form of communication – call and response – and Mariah just likes the classic combo of squeaking out high notes while wearing a boob tube. Sometimes May just astounds...

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Recognition for hardship or marketing ploy?

Posted on Feb 16, 2012 | 5 comments

Recognition for hardship or marketing ploy?

Mama Lewis and the Amazing Adventures of the Half-Brained Baby has been nominated, again, for the Circle of Moms Top 25 Moms with Inspirational Families award. Um. Thanks. It’s kind of like being nominated for “Who has the saddest life?” Cancer. Autism. Genetic abnormalities. The nominees form a long list of children born without and their parents who have suffered. Last year I was flattered, but that was before I realized what it was all about and, by that point, I’d already encouraged people to vote and I didn’t see a way out. Plus, I wanted to believe that it was for all the right reasons. Surely, rewarding the mothers who have sacrificed so much is a noble cause, right? The more cynical side of me knows that this competition has absolutely nothing to do with awarding inspirational families. The email was sent by the Circle of Moms marketing team. How many companies email you and get you to advertise for them, for free, directly to your readers for a month? I encouraged all my readers to go to their site every day to vote (you can vote more than once). Last year’s list included 84 blogs. Let’s say each of those bloggers wrote a post, as I did, encouraging their readers to vote. And, let’s say that on average – and this is a sum I’m pulling out of thin air – those posts got 300 hits (which is actually a pretty low number). That’s 25,200 readers. Except, the number of hits the Circle of Moms people are generating to their site is much higher than that. Because besides the Inspirational Families competition, currently, they are also running a Top 25 Fashion and Beauty Moms and a Top 25 Postpartum Depression Blogs. I’m not joking about that last one either. I don’t want the reason I’m inspirational to be because May was born disabled. Is that an achievement? Most definitely, I would change it if I could. I feel cowardly about it all the time. And I don’t want an award that pits May against kids with Downs Syndrome. How do you judge who is more “inspirational” between myself and a mother raising her kids alone after their dad died of cancer?  If I accept the nomination, we are in competition. Yes, I’ve made sacrifices and, yes, perhaps my life is more challenging than some other parents. But, maybe it is also happier. Who wins that competition? Tonight, I emailed the people running the competition and asked to be withdrawn. In the future, if my blog is nominated for an award, I hope it’s because of my writing. What do you think? Am I too cynical? Or, do you wish you’d had the opportunity to vote for my “inspirational” family? Finally, my own little inspiration – my kids with my sister just last week. Sob! I miss Aunt Carrie! [satellite auto=”undefined”...

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How does special needs potty training work?

Posted on Feb 9, 2012 | 13 comments

How does special needs potty training work?

I admit it. My mom worked some kind of voodoo magic over my daughter. Because, it’s not just my mom anymore. I am now 3 for 3 with my daughter on the potty. Now, I only tried once today and twice yesterday, but each time, within 30 seconds, there it was. Pee-pee in the potty. I admit it – and, I’m just the kind of wilful daughter who refuses to believe that her mother might be right. I’m not saying that May is potty trained, or even close. But, the evidence has forced me to confront the possibility that it might, in one form or another, be possible. May seems pleased with the whole thing. Here’s what we are doing: 1. Putting her on at “major moments” of the day, like morning and evening clothes changes. 2. Supporting her entirely. We do everything except release the pee. 3. We don’t stay on long. If it hasn’t happened after a couple of minutes, it’s over. 4. We sing our pee-pee song. (very funny says May) 5. When successful, May gets lots of cuddles and exclamations of pride and delighted shock. But, I just don’t get it. How is it that a severely brain-damaged child can pee within 30 seconds of being sat on the toilet? It is very rare that May pees without her diaper on. I think it happened once in the past year. And, despite our success, I still don’t think she understands what a toilet is for. I just don’t see that level of cognition elsewhere. My theory is that something about the position releases her bladder. Does anyone know? Also, I could use some potty training advice! Photo: Flickr...

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