Hello? David Cameron?

Here’s a question. How is it that a father of a severely disabled child – a father who sees therapists traipse in and out of his house, who changes his son’s diaper even after he is a toddler, who knows his son will never achieve the same basic level of functioning life skills as other children – how can that father allow the country he is in charge of to cast aside children like his own son?

But, that is exactly what David Cameron, the Prime Minister of Britain has done. By not ring-fencing community funds for the disabled, he has allowed councils to shave off the funding for the most vulnerable children in society.

What kind of financial sense does it make to remove the people and equipment who will allow children like May to learn the skills to become independent?

No, David Cameron – you are right – much better to allow them to grow completely dependent on the State for the rest of their lives. That will be real cheap.

Jess Moxham, a parent familiar to the comment section on Mama Lewis, wrote a superb piece in The Guardian this week on this very issue. Her son, Sam, attends Small Steps School like May did.

Small Steps are still desperately looking for a new space to house the school as Wandsworth council are evicting them – and all the children who benefit from the service – in December. There is no other charity supporting families like our in the whole of London. I know a family that drives two-hours there and back to give their son the benefit of the team’s expertise.

Congratulations David Cameron. All hail the Big Society.

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Conversations I have against my will

A bit of grrrrrr today. Grrrrrr.

Our car was sideswiped while parked about a week ago.

Today, the repair company is picking up our car and dropping off a courtesy car as arranged by our insurance company. I asked them if it would be comparable to the car we own. “Do you own a VW Polo?” he said, “Because that’s what it is.”

No, I don’t. When you have a child as severely disabled as May, a two-door hatchback doesn’t cut it. We could use the entire back end of the car, passenger seats and all to just fit the double stroller we have to use.

I called the insurance company and asked for a bigger car. I even offered to pay the difference. “I’m sorry,” the customer services lady said to me, “but we can only arrange a car as in keeping with the policy.”

So, I explained my daughter’s disabilities. “I’m sorry,” she said, “but it would be unfair on our other policy holders.”

“But, it isn’t fair on us,” I insisted. “Our situation is not equal. We are not receiving a mode of transportation that is equal to getting us places like the rest of your customers.”

This went back and forth for a while. I asked to speak to a manager – who she said was unavailable. “I’ll hold.”

“He won’t be able to speak with you. He will call you back within 24 hours.”

“That’s not good enough for me,” I said. “We need a car today. I’ll hold.”

“You will be holding all day. He is busy.”

“Let me put this in perspective. My daughter can’t walk or talk. Your boss is busy.”

There was a low moan and she asked me to wait. Five minutes later she returned, “My manager is too busy to speak to you, but he has approved a bigger car.”

“Thank you,” I said sweetly.

I don’t enjoy these conversations. I don’t want to speak to managers or throw my daughter’s disabilities in someone’s face. But the fact is, our lives are harder than most people’s.

I have these conversations with airlines that refuse to chill my daughter’s medication because it will take up room in their refrigerator. Or, nurseries that herald their special needs policies, but won’t prioritize May because it would be “unfair on other parents.” Or, people who park in handicap spaces and when I ask why say, “My wife is in the shop and she is pregnant.”

Pregnancy isn’t a disability.

I struggle to dress May in the morning. Fine. I accept that. It takes longer. We sing some songs as we go along. But, I should not struggle to access the basics that any other family, or policyholder, would be able to use.

Finally, enough grrrrrr. Here are a couple cute photos of my son. He turned three months old yesterday and he is no trouble at all. My insurance company could learn a lot from him.

Don’t forget to VOTE for May and Mama! We are nominated for Best Special Needs Blog at Parents Magazine!

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This week I’m… going private. (Goodbye NHS. Hello massive bills.)

We’ve gone private. I never thought we’d ever do that. Honestly. Because I believe in the NHS. Despite May being born in the care of the NHS and feeling that the birth went wrong, I still believe that she is seen by some of the best medical professionals in the world.

Unfortunately, physiotherapy is not one of those areas. Originally, I was satisfied with the physio. Yes, I had my issues. But, I voiced them, and I felt they were seen to. Then came the crushing realization that May deserves better.

I don’t use the word “crushing” lightly. That’s how it feels. May deserves something, anything more than a physiotherapist who is reluctant to touch her.

Which leads me to the embarrassing, humiliating and, again, crushing experience of meeting May’s new private physio. That I felt these things is not her fault. It was the combination of seeing how beneficial she would be for May and having to justify the physiotherapy May has received so far.

These were the completely LAME answers I had to give. (SIDE NOTE: When will I become a good liar? Much less embarrassing.)

Her: How often does she have physio? Once, twice a week?

Me: Er, once a month? Maybe?

Her: And, what happens during these sessions? What does she do with May?

Me: Um, she’s kind of hands off.

Her: “Hands off?”

It was a statement rather than a question. A statement of total disbelief and disgust mixed with horror.

Hindsight is a brutal thing. I would give anything to go back and give May the physio she really needed over the past year. What a crucial year it was and now is lost.

Here’s what really gets me. Both May’s previous physios explained to me that physiotherapy was something they would instruct me to do with May. In other words, they would assess her needs and I would deliver it. When they explained this, there would always be this moment at the end of the conversation where they would say something like, “You do understand that right? Because some parents think it is our job to do the physio, or to come every week. And we just can’t do that. That is where you come in.”

And, I would nod.

But, now I see they were pushing that concept on me. Because it isn’t black and white – as in, the only options are 1) they do all the physio – unreasonable, or 2) they instruct and I do it – reasonable. There is a third option, where the physiotherapist works with us once a week, notes May’s progression, stretches her and does activities with her and THEN I try my best, in my untrained but motivated mama way, to replicate a small part of what she has done throughout the rest of the week.

That is what works. The only reason it wouldn’t be the case is either 1) laziness, 2) lack of resources or 3) lack of imagination.

As evidence that there are other things, new, simple things (that is the horrifying bit – how simple these things are) that we can do with May to help her progress:

Want to read more from Stacie? Check out her posts on BabyCenter’s Momformation!

VOTE for May and Mama! We are nominated for Best Special Needs Blog at Parents Magazine!

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Was this a scam to lure in special needs families?

A few months ago, I entered a giveaway to receive a free iPad for May. It was the second giveaway the blog, called Marissa’s Bunny, ran. In the first, Mike, the writer of the blog, organized a raffle where for every $1,000 raised, a special needs family would receive a iPad. Tickets cost $2.

In the first giveaway, 20 families were promised laptops. It doesn’t appear than any received them. Perhaps some did but, if so, the vitriol unleashed over the internet would imply few did.

Why then open a second giveaway? There is much about this story that perplexes me. Since my initial application, months ago, I have not heard anything back other than his own postings on the blog. (I did email him for this post, to hear his take on the status of the contest, but he did not respond.)

Once it was clear that receipt of the iPads was no longer a given, he wrote an elaborate story on the blog involving emailed threats, the police and his family’s safety. Without revealing any specifics, he conveyed vague threats of violence to towards himself and his children as the reason he was forced to stop. Given the tone of the writing, I hope it was all in his imagination.

This lack of details about the closure of the giveaway, combined with the disappointment of parents already bludgeoned daily by disappointments, sent the special needs blogosphere into a tizzy.

People have a tendency to trust and admire the parents of disabled children. There is no justification for it. I’ve never understood this. Not many of you readers know me in real life. I could be complete loser in real life, or worse, a man. (That is a joke!) Or even, an American! (Actually, that part is true.)

As the father of a daughter with special needs, readers took Mike on faith and donated A LOT of money to help raise money for his daughter’s surgery. I’ve read of figures topping $25,000, though how much exactly, I am unsure of.

On the other hand, it is not unheard of for companies and charities to offer special needs children free products. Only a couple of weeks ago, my speech and language therapist told me about a British charity that is giving away iPads to children. But, I’ve never heard of something like this.

What a curiosity! Have you heard of the Marissa’s Bunny giveaway/raffle?

VOTE for May and Mama! We are nominated for Best Special Needs Blog at Parents Magazine!

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

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 parking?

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What should you say to the parents of a baby in special care?

Yesterday, I wrote a post ‘What NOT to say to the parents of special care babies‘ on BabyCenter.

This got me thinking… what is the right thing to say?

A week before we took May home from the hospital, my husband and I attended a wedding. At the wedding, pretty much everyone, even the people we didn’t know well, knew that we had a baby in the hospital.

One friend of a friend approached me. He was a parent himself.
He took my hand. “Congratulations and commiserations,” he said to me.

Other people at the wedding were offended on my behalf, but I thought it was honest and touched genuinely on how I felt. I was so grateful that a person didn’t pretend everything was okay. He managed to do so, while at the same time recognizing the love we had for our daughter.

So, instead of being offended, I thanked him and we spoke for a while. Our mutual adoration for our children (and the newly married couple) was our only link, but his decency lasted with me.

I don’t know that everyone would agree that it was the right thing to say, but it worked for me.

What do you think people should say to the parents of a special care baby?

Want to read more from Stacie? Check out her posts on BabyCenter’s Momformation!

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Insensitive. Irresponsible. Midwife grrrrr.

Yesterday, I attended a cesarean clinic at my hospital’s birth center. During the clinic, a midwife prepared me in the same way as for a normal operation: pre-op instructions, blood samples, necessary prescriptions…

I thought it would be reassuring. The midwife would explain the before, during and after op, and I would ask all my serious and silly questions. When I saw my consultant on Thursday, he said not to worry, whatever I wanted, she would write it down and it would be done on the day. No problem.

Except, for the midwife, there was a problem. Several. There was a problem with the timing of the meeting; she kept looking at her watch. There was a problem with all my requests; like getting skin to skin contact since they need to wipe and warm the baby first. But, most importantly, there was a big issue with my requests about post-birth care of my baby.

“Because of my previous birth history, I wondered when the baby would be checked out by a pediatrician?” I asked.

“Oh, usually they examine the babies 24-hours after the birth. But, it’s not a problem, one of the midwives will do an initial check.”

My insides twisted up inside of me when I heard that. “Is there any way we could get someone in sooner,” I asked.

“I doubt it. The doctors really don’t like coming down earlier than they need to if the baby presents okay.”

She already asked a detailed round of questions regarding May’s birth, so she knew the circumstances. Yet, while we spoke, she jotted down notes in my file – mundane things like, “swab provided” – while simultaneously speaking from script. There was nothing ordinary about May’s birth, but she gave me the brush off in the manner people do when they think they’ve heard it all before.

Therefore, when she said, “The doctors don’t really like coming down…” I fell into a kind of emotional coma. Inside, I screamed, “They can’t come down one flight of stairs and check on a baby that might die? What? What?”

But, on the outside, I exhibited no signs of life. Instead, I calmly said, “Issues with my daughter weren’t discovered for 12-hours. I don’t want that to happen again.”

Very casually, like we were discussing food on the ward, she asked, “And, what kind of signs were those?”

I collapsed inside as I delivered a list of a series of symptoms that anyone, medically trained or not, would know could kill a newborn: “She wasn’t breathing. She had major seizures. She wouldn’t feed. She didn’t cry.”

She is unfazed. “Well, if that happened, I can assure you a doctor would come down immediately. And, there will always be midwives on hand to check her.”

“No offense, but there were midwives on hand to check May as well, and when I thought she wasn’t breathing, my midwife didn’t even pick her up to check her vitals. I’d really feel more comfortable if a pediatrician could check the baby over as soon as possible.”

The midwife looked at her watch again and said, “I would like to say I could guarantee that, but I can’t. So, why don’t you ask the team on the day and they will see what they can do. And, if that is all…”

I was encouraged to leave. And, I’m ashamed to say, I did. I left. I found myself smiling at her and walking, of my own accord, out of the office, down the hall, into the elevator and out the hospital doors.

For the next three hours, I didn’t do anything. I didn’t listen to any music on the drive home. I didn’t eat any lunch when I got there. I sat at my kitchen table and I stared into space and thought, “No one is going to watch out for my baby. My baby is going to stop breathing and I will be too tired and drugged out to realize.”

Finally, my husband phoned to see how it all went. As soon as I heard his voice, I sobbed. I told him what happened. He was furious. “What is wrong with these people? Don’t they know that May almost died?”

“I tried to explain,” I said, feebly.

He calmed his voice. “I know you did, honey. Who did you talk to? I’m calling the hospital. I’m calling them right now.”

Ten minutes later he phoned me back. “Don’t worry. I spoke to one of the obstetricians. He is putting in the request now, a pediatrician will examine the baby. There was no question. He didn’t argue with me. He was in total agreement.”

He gave me the number of the doctor, who I called. By the time I got a hold of him, the request had already been made and filed. “Don’t worry,” he said. “You are completely right to worry. There will be no problem having a pediatrician look at your baby. It is totally justifiable.”

I felt so much better. But, so much better is still not the carefree mother-to-be I was when I entered the hospital yesterday. The midwife – that insensitive and irresponsible woman – reminded me all too clearly that the care you get greatly depends on who you get on the day. Fingers crossed it isn’t her.

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More from the So-Called Experts Crew

Maybe I should have a new tag reserved only for social workers, I’m starting to feel like “so-called experts” doesn’t cover in the slightest the underlying prejudice and superiority towards the families they are involved with.

As a family about to get more involved with social services – I’m going to instruct my key worker help me apply to them for respite care – I wish I had a better impression of social workers.

I’ll illustrate my own personal prejudice with a continuation of a previous story:

Remember this visit? The one a couple of months ago when social workers came to my flat, completely ignored my husband and proceeded to tell me how I needed to clean more?

Those same social workers asked for another appointment a few weeks ago. They wanted the engineer to adjust totally unadjustable, fixed parts of the chair. So, you know, a worthwhile appointment for everyone.

I showed up. The engineer showed up. Where were they?

The next day I received a voicemail message. It was one of the social workers. She was outside my old address – even though I’d given her the new address at that first meeting. She said the engineer hadn’t given her enough time to reschedule the appointment and so she missed me. She showed up a day late, at the wrong address and was wondering why I wasn’t there to let her in.

Two days ago, she called me again. “I was calling about the last appointment? The engineer did not inform me in time about the it. I was wondering when a good time would be to come and see about the chair.”

“Actually, you’re wrong,” I said, bluntly.

“Wha-” her voice turning an unattractive nasal quality.

“You did show up to the appointment. But, you showed up a day late at the wrong address.”

“No, no I didn’t.”

“Yes, yes you did. I have you on a voicemail, calling me from my old address on a day when you didn’t have an appointment and just assumed I would let you into my house. The engineer showed up at the right house, on the right day. You messed up.”

“No, no. That wasn’t me.”

I love that. Irresponsible. Shirking the blame on to someone else. And, a liar to boot. I continued, “Well, either you or one of your colleagues did. I’ve known that engineer for over a year now. He has never missed an appointment. In fact, it is not unusual for him to chase me up about them, so I find it very hard to believe that he was the irresponsible one in this case. Especially, as he showed up.”

She was unapologetic. But, why should she apologize? Isn’t she perfectly within her rights to show up unannounced at someone’s house and expect they will let her in without an appointment, and when they don’t, blame someone else?

I’m trying to figure out what the best way is to complain about this – and any suggestions for people in the know in regards to social services are welcome to contribute ideas.

The engineer is one of those gruff, repairmen types. It is always clear that he and the social workers rub each other the wrong way. That only makes me like him more. Because, unlike them, he treats May and I with respect. He is always making little cooing noises at May, is never late and has conversations with me about the chair, instead of imposing his will.

Good luck to the social workers if they try to blame this on him. I don’t like their attitude of entitled superiority – perhaps they see the families they work for as a lower class or uneducated or socially inept. I am none of these things. According to their job description, they are work for us, not the other way around. I will back him all the way.

I read an even worse story this week: Maggie’s parents over at Maggie and Alice have chair despair. What is the difficulty with just doing your job professionally? Show up to your appointments. Order essential equipment. It really is that simple.

Read more from me about my pregnancy on BabyCenter or via Twitter @MamaLewis1.

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Most despicable article of the year?

Dreaming of how next to scam the British public

How would you describe the British Motability scheme for disabled people and their families?

1. A means by which the most severely disabled people in the country can be transported without relying on the government to cart them everywhere they need to go. These people, who are unable to complete a journey  without the assistance of friends or family, are given the choice of an allowance towards transportation for the year or exchanging that money for a leased car for three years. If they want a nicer car, they pay additional money for it.

OR

2. From an article in today’s The Sunday Times: “A scheme costing taxpayers £1.4 billion a year to provide the severely disabled with a new car every three years… abused to provide tax-free motoring for friends and family… Almost 200,000 (cars) are used by the disabled’s friends or relatives.” Followed by a quote from a conveniently unnamed government source, “These cars are incredible deals but they are often not being used for the benefit of the disabled person.”*

I like quotes that use vague words like “often”. Even better when they aren’t accompanied by the source making such an astute point. But, hey! Who needs journalistic integrity when you can use vague quotes from unnamed sources to disparage the most vulnerable people in society?

I have a few other problems with the article ‘State hands out BMWs to ‘disabled’ in £500m scandal’ – not the least of which is that I can’t remember the last time the State knocked on my door and gave me a BMW. Is that happening? Hello?

I should get one. I’m one of the scumbags described in this article. I’m the non-disabled family member who will benefit from the Motability scheme next year when May turns three-years old.

Are they angry because it costs the tax-payer? Because, I wonder how much it would cost to cart around every disabled person in the country on several journeys every day, lifting them in and out of the vehicle and securing them safely, understanding each and every one of their very specific needs. That wouldn’t cost anything.

Or, are they angry because the government doesn’t have the legal right to insist that disabled people only use the money on cheap cars? Are they angry because there people who have paid the extra money necessary to purchase a BMW on the scheme?

If the government set up a scheme whereby they helped disabled people fund their transport, but then only allowed them to use that money if they bought a Ford, they would be setting up a monopoly. I think the other car companies would quickly find fault with a scheme that poured money into their competitor’s pockets.

But, here is the leap in logic that really makes me sick. The article implies that we are benefiting from our daughter’s brain-damage. May will probably never walk, let alone drive a car. In all likelihood, she won’t be capable of ordering a taxi. That would mean dialling a phone number, speaking and relaying directions.

But, what am I thinking? A BMW totally makes up for that.

Despite how insulting the article is, we have a greater concern: Is The Sunday Times pushing its own agenda – despicable in its own right – or, is this propaganda directly from the government before they initiate ending the scheme altogether?

*I would link to the article, but The Sunday Times uses a subscription service. You’ll have to pay for it if you want to read it in full.

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Will these terrifying stories end with May the victim?

Several sickening stories hit the news today. Everyone of them had me thinking, “What if that was May?” My greatest fears for May all happen in twenty years. If not twenty years, than when my husband and I are long gone.

While May is under our care, she will not be harassed or murdered or abused or denied benefits that are rightfully hers.* Never. It will never happen.

But, without us there?

Let’s remember that the adults who suffered these abuses started off as adorable babies like May. One day, she may depend entirely on others for her care; people who are not her family. We can only hope that their decency and sense of morality will be as high as ours when faced with a beautiful young lady who can not defend herself.

It doesn’t have to be this way. Care home employees could be paid decent wages. Requirements to achieve the posts could be more challenging and therefore the positions more respectable and desirable. I don’t want the people working with May to be unqualified, unable to find work anywhere else. Working with people with learning disabilities is challenging – and also very rewarding – let that be reflected in the caliber of its applicants and their salaries.

There are people who could stop these abuses before they happen. The man who owned the care home that abused its residents. The overseeing body that ignored the complaints from a families and ex-staff. The police. The government.

But, you know what I imagine will happen? The staff who featured in the film, abusing residents, will go to jail for a few years. Inspections will be announced, but uncover nothing. A veneer of purpose will descend over the government – for 48 hours.

Everyone involved, outside of those jailed – the people that oversaw them, the inspectors, the government officials and politicians – will shake their heads in horror. But they will sleep well at night. Their jobs will be safe.

Revolting.

*Every one of these stories appeared today. That’s right. In one news day. And, there were more I could have picked from. Honestly, I feel sick.

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