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Archive for the ‘Hot Air’ Category

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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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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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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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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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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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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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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