CP Info

What should I ask the hospital regarding May’s surgery?

Posted on Jan 13, 2013 | 16 comments

What should I ask the hospital regarding May’s surgery?

Tomorrow, I have a hospital preparation appointment to establish that May is well enough to go on the waiting list for hip surgery. At the meeting, I can ask questions and – since I was blindsided at the last meeting – I now have about 1,000 questions I want to ask, ranging from How will May survive the surgery? all the way to How will I survive a week living the hospital without Wi-Fi? I’m not sure what is relevant to ask at this point. I imagine there are probably people reading this though who have had hip surgery themselves, or a child who has had major surgery, or perhaps are a doctor – any number of people read this blog who might have a good idea of the kind of questions I should be asking at this point. May is a little girl; she is only 3 1/3. Her cognitive abilities are very low. Her physical abilities are very low. How will surgery change that? I don’t know. For good – one hopes. But, perhaps for bad as well and I want to do everything I can to avoid that. What should I ask tomorrow regarding May’s surgery? *** UPDATE *** Thank you very much to everyone who gave me ideas to take in with me today. I felt far more informed. It was like a revision session with an exemplary study partner! If I received an answer that relates to your comment I will endeavor to put something below as a...

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3 Half-Brained Genius Awards

Posted on Dec 28, 2012 | 0 comments

3 Half-Brained Genius Awards

The prestigious Half-Brained Genius Awards are coveted across the globe. (TRUE!) They are not given to the major moments that we read about on the news. (Also TRUE.) These are small moments of genius that I read about on blogs I follow, that make me think a parent is awesome. Or, AWESOME-O! As we call it in my family. So here are three big AWESOME-Os! to some pretty spectacular parents of special needs kiddies: 1. Kara and Ali are parents to two little wonders, Sebastian (who has CP) and baby Tallula. Kara wrote a post about their recent visit to London, where they mastered the public transportation system here. They deserve an AWESOME-O just for forcing London bus drivers to comply and press a button to release the ramp to let them on-board with their wheelchair. (Stories like that make me livid.) Instead, Kara and Ali receive the award for their noise cancelling headphones that Seb wore on the Tube. What a great idea this is! May can listen to music instead of noisy commuters! 2. Jenny Wade wrote a post about carrying on with family traditions during the holidays, especially important when you have a child with special needs. In the post, she describes stringing Christmas lights on her son’s specialized bed. Including May, on any level she can participate, is what we aim for. After we moved last year, I forgot to restring the lights to May’s bed. What an oversight! Bizarrely, I just said to my husband the other day that my kids need a new nightlight for their room. Instead, I will string those lights back up, inspired by this post. Why should May only have Christmas lights only once a year? 3. Francesca Cook wrote a guest post, here on Mama Lewis, that was one of my favorite of the year: Someone called my daughter with CP a “Spaz”. Personally, I think the best writing comes from raw, honest emotion and Francesca spells out what this experience was like for her. A must read. Do you know someone who’d like to write a guest post on Mama Lewis, or who deserves a Half-Brained Genius Award? Email me at contact@stacielewis.com! Photo credit: Jenny...

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Bet you didn’t know this either.

Posted on Mar 27, 2012 | 4 comments

Something slipped my mind this week. Or, maybe I should say it never registered at all. Sunday was National Cerebral Palsy Awareness Day. Yeah, I didn’t know either. I only mention it because it coincided with a couple of pretty horrific news stories. Not exactly cause for celebration. In the first, LaKay Roberts’ mother is told by her elementary school that LaKay is forbidden to use her walker any more. You read that right. Forbidden. The mother videotaped the conversation – and it is edited, and there is definitely some animosity there between her and Special Education Director – but watch it yourself below and see what you think. I have always maintained – and said on occasion to people working with May –  that it doesn’t matter what they think of me, their job is to take care of May. In the second, Carolyn Jones discovers the beloved second child she is carrying may not live to term and, if it does, will suffer for as long as it does live. Terrible terrible news. She is already traumatized, but the State of Texas goes one further. After already enduring her sonograms, she has to have yet another – during which the fetus is described to her in-depth – and wait an agonizing 24 hours after it before she is allowed an abortion. (Read my BabyCenter post on her story.) What is the point of a day of celebration, when people affected continue to be treated so barbarically? There has to be an entire shift in public attitude to stop these kind of things happening. Having said that – and even though I have fought my fair share of battles – I am often surprised by the generosity of spirit that happens all the time, every day. Rather than focus on all this GRRRRRR, if a celebration is due, let it be about the every day people who help in simple ways. Here are some people we know who treat May – and everyone else they meet – with the greatest respect they can – normality: My nephew Connor’s school, Child’s Elementary in Ypsilanti, Michigan, where children with severe disabilities are integrated right alongside the others in the class. Or, Palmerston Primary School, in South Wales, that does the same thing. Both prove it can happen – and does – all over the world. Before I found our local, independently owned pharmacy, Sefgrove Chemists, I spent hours each week traveling to different pharmacies. One would stock a certain medication – and be the only one to do so – then we’d get back in the car to travel to another that stocked the other one we needed – only to arrive and find they had ordered the wrong thing. That NEVER happens now. Sefgrove even find mistakes the doctors make. Today, I happened upon a parent from May’s school there. She is not a local, but it didn’t surprise me in the least that she would travel there. The cafe near my house, O’Girasol, is always packed. It is the kind of place everyone goes to: elderly, babies, disabled – and those of us whose only disability is an inability to stop stuffing our faces with food. At O’Girasol no one cares when the disabled kid in the back screams with delight when his food arrives. No surprise the locals voted it their favorite business this year.   Want to become your local hero? Read my post: 5 very simple ways you can help the...

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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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So, David Cameron, your cuts won’t hurt disabled children?

Posted on Sep 14, 2011 | 6 comments

Well, what of their families then? Cuts to local councils make our lives ever more challenging. Here is a simple story to help illustrate this. One, I think, even Tory ministers can understand. Several months ago, we applied for a disabled parking spot to be placed outside our flat. Our road is one of the few ones near the shops that isn’t permit parking only. It crowds very quickly with cars. May is 2 1/2 now. She is heavy and can’t support her own weight. Most days, I have to park far down the road and carry her across the street and into our house. Along the way, I have to fiddle in my bag for the keys, open the door and climb a couple of flights of stairs, all while holding her. We received a letter about a month after we applied saying that due to financial constraints, they wouldn’t be able to investigate our request until September and put in the space before December. That was bad enough. Today I opened a new letter. It’s worse: Unfortunately due to the delays caused by the financial diffculties the Council has recently faced the estimated timeframe for the installation of your Disabled Parking Place has had to be adjusted… we are due to begin work on this batch in December 2011… it takes a minimum of 3 months to introduce a Disabled Parking Place and we estimate that the eariliest date the installation of the Diasbled Parking Place you have applied for shall be March 2012. Almost a year before someone paints some lines on the road outside our house? And, that’s the “earliest” that Lambeth imagine this issue will be resolved. May will be three years old then, and heavy. She is completely disabled. She can’t even throw an arm over my shoulders. How long before it is completely unfeasible for a small woman such as myself to carry her down the road? Do we have to be completely housebound before someone in Lambeth or the government see this is an irresponsible way to manage disabled...

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