Posts made in March, 2012

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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Mama Lewis v The So-Called Social Services

Posted on Mar 20, 2012 | 5 comments

Two weeks ago, I had an uncomfortable conversation with a Social Services Occupational Therapist (SSOT). It disturbed me enough to request he not meet me at in my home, which he was meant to review for his records, but at May’s school where her community OT and physio could join us. I’m grateful to them for their support and professionalism, as well as, their familiarity with May, both her needs and preferences. Their confidence meant I could relax and focus on the chair. After all, lost in all the wranglings from our last conversation was whether the chair we were viewing that day was appropriate for her. Also, I felt buoyed, after a visit from our normal social worker, who told me she would speak to the head of his department and to contact her with any further issues. “Don’t you let them bully you,” she said. Before an examination of the chair, I asked the SSOT whether he’d read May’s notes. “Oh, yes,” he said, “of course. As I had done before we spoke on the phone last week.” May’s OT and physio were in the room when I asked, so you make what you will of that lie. As we all discussed the chair we were about to see, the SSOT piped up. “I am considering the Squiggles chair* for May,” he said. Let me repeat something I said earlier: I am grateful for the OT and physio. Imagine they hadn’t been there. I would have been arguing against this chair – one I’d seen the school try out with May every day, because that was the only chair available from storage. I’ve seen her cry in it. Struggle in it. Not eat in eat. Moan and complain in it. But, it wasn’t just me that immediately dismissed his choice as “uncomfortable,” “inappropriate” and “not supportive.” Even so, he wasn’t put off. “I’m considering the chair long-term though. The Squiggles chair could last her four or five years.” This is another example of a so-called expert making a medical decision based on budgetary requirements. It is completely irresponsible. You don’t purchase a complex, therapeutic chair because it lasts the longest. You purchase it because long-term it is the one most likely to help May sit independently, position her hips safely and allow her better postural support. If we are really talking long-term gain – what is more important or cost effective than that? But, here’s the crazy thing, the chair we chose – the Mygo – could possibly last twice as long as the one he wanted. So, he hadn’t even done his research there – in the one part of it he thought was essential. By the end of the visit, he’d decided he’d seen enough. He is recommending the chair. In this, another major trial in exchange for a small victory. *This chair is not inappropriate for all children; it just doesn’t work for May. The Squiggles mat was an essential piece of equipment when May was a...

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From the archives… speaking baby talk (VIDEO)

Posted on Mar 16, 2012 | 2 comments

Two nights ago, I received an email from a parent who feels pretty desperate. It was like time traveling back into my thoughts two years ago. I can’t get her out of my mind – how lonely and sad she is. I was like that once too, and though I am not today, I still fall into that miserable cage of “what-ifs” sometimes. So, let’s look back (and forward) to happier times. This post from the Mama Lewis archives is in keeping with our music post this week – from back when May had just started anticipating sounds. Here she is our baby Ieuan’s age, eight months old, and like him very quick to giggle. —- December 28, 2009 This week I’m… speaking baby talk (plus video update) This week we are communicating to May via echoes. She loves a big moan with my husband. She lies on his chest and moans, and he moans in return, and this can last for a half-hour at a time. Never is it is clearer that they are related. I’ve been trying it as well, with some good results. I’m imitating all different sounds she is making. She gives me a little, delighted smile after she hears the same noise she just made. At the advice of the SALT, we are feeding her textured food (rather than all pureed) and placing it in the back of her mouth. This encourages her to chew and also gets her tongue moving in new ways. By improving the dexterity of her mouth, we can help her shape new sounds. It is all related. In previous weeks, I discussed May’s growing ability to anticipate actions and now you can see our little ladybug (NOT ladybird British readers) in action. The video, filmed last night, demonstrates how adept she’s become at anticipating actions. Watch how she laughs at my husband’s pre-tickle gasp. Not to dwell on the negative, but you can also see how limited her arm movement is, though her head movements, expressions and lovely smile are very evident. Also, listen out for one of those new sounds, right at the end. A sort of high-pitched squeal she makes when she is ridiculously happy. And even though, as you can hear, she has a cold, she is still the happiest ladybug I have ever...

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How to NOT get hired to work for May

Posted on Mar 15, 2012 | 7 comments

How to NOT get hired to work for May

I’ve advertised for a care assistant for May. I have one person, who May loves, a part-timer from her nursery. But, now that our respite money is finally in our account, only five months after the government was meant to deposit it – and three months after we hired the part-timer – we need another. You may think five months is a long time to pay up, but that is nothing! Lambeth Council contacted me this week by email instructing me that our disabled parking spot, which we applied for shortly after May’s birthday last April, will be delayed again, until June. That’s over a year! They helpfully included a diagram of our street and where the disabled parking spot will go… someday. I emailed Mr. Smith – that’s his real name – over a week ago to ask the status of the parking space. He waited to reply until literally a few minutes before he left for on annual leave until – conveniently – June. Which I thought showed remarkable cowardice. Keeping to the theme of people I would never hire, I give you the following respondents to my classified ad for May’s assistant. These are both real responses, though I removed the names and cut the second one short. Candidate 1: im sure of doing d job and also make d baby happy please Candidate 2: Hello, My name is C—, I’m a 24 year old, I’ve got a Bachelor and a Master degree in international relations, diplomacy, and arts. I am very communicative, trustworthy and open minded. I speak fluently English, Romanian and Russian, understand French and Spanish. I am also a professional dancer… Best regards, C—- I think I’ll keep the ad up for a few more days. When hiring someone to work with May, what traits do you think I should look...

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Six months ago May started music therapy. Has it worked?

Posted on Mar 12, 2012 | 12 comments

Six months ago May started music therapy. Has it worked?

When May began music therapy sessions run by Nordoff-Robbins, six months ago, my plans were ambitious. I am one driven mama and May is my toddler in a tiara (minus the tiara). My goal? May would have fun, or we would stop. (Don’t you wish all corporate meetings opened with that as Item 1 on the agenda?) May loves music. If all she did was enjoy herself, it would have been a success to me. However, it doesn’t take a genius to know that things that bring us pleasure are great motivators. Back then, I made a wish list of outcomes I hoped music therapy would result in, that included: reaching moving towards an object repeating sounds making new sounds participating in call and response (basic communication) looking towards objects Here is a video of May, today, at her session. You be the judge. Has she improved in any of the above areas? (Watch this video from a session in November 2011 as a...

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