Archive for February, 2010

When May was assigned to her team, I saw our relationship as adversarial. Maybe that is only natural. Before she was born, I anticipated fudging my way through most of her first months, making mistakes and learning, just like other parents. But instead, I found my every move in hospital open for correction: “hold her this way” or “move her very slowly as not to scare her” or even “don’t cuddle her too much.” All bits of advice, especially the last, that I ignored. I anticipated fighting May’s corner but, in most cases, it is in situations I never would have expected to.

When May arrived home, instead of the occasional visit by health visitor, like a normal mother, May had a team of six investigating, advising and visiting us. They’ve been with us for over eight months now. There have been moments that I questioned their decisions and I’m sure I’ve been a serious pain in the ass, but overall it has been very positive.

I thought they would see May as disabled and I would see her potential and never the twain shall meet. But, in fact, they have been as enthusiastic about pushing May forward as I have been. In many cases, they brought up things – equipment, activities, etc – that I never knew existed, let alone requested.

Case in point, May’s SALT who had her last session with us yesterday. She is moving on to a new job at a children’s hospital. When she arrived, she said, “I have all kinds of presents!”

We both laughed. Her idea of a present is a special sippy cup for May.

A few weeks back, she gave me a vibrating toy for May. It is a long tube that you can wrap around her. May opened her hands around the tube in delight as it turned off and on.

“Now,” the SALT said, with a giggle, “if you want to take the toy home, you have to take the box with it.”

“Sure,” I said as she handed over the box.

“It’s really for adults,” she said, still laughing.

I accepted her “present”, but I hide the box well away from visitors, lest they think I am some kind of pervert.

More seriously, when May started throwing up during her feeds over the past couple of weeks, my husband and I were worried. We were worried about her weight going down and “so-called experts” thinking it was a critical issue. We were worried she wasn’t digesting enough of her medications. We were secretly worried there was serious problem related to her disability.

I avoid talking about food with medical staff because at the hospital, the staff was obsessed with it. Up until the day we left they told us cheerily “not to worry, a feeding tube is still a possibility. We can teach you!” They looked at her chart and not her ability to swallow and it drove me almost completely insane. May ate fine, but they were so wrapped up in her disability, they couldn’t see the wood for the trees.

But, when May started throwing up recently, for the first time I felt confident asking someone about it. I thought the SALT would give reasonable advise without panicking. It turns out that I was feeding May like an infant, in a very reclined position, and because her larynx had grown, the position was making her gag. Problem solved! Panic over!

These days, I have a totally different impression of May’s team than I did at the start. And, because of our close working relationship, they are reaping the same rewards as I, the same pleasure in witnessing the amazing progress May is making.

So, thank you SALT for all your hard work and presents! Good luck in your new job!

** Sorry if it is hard to see the photo, for some reason, my computer takes photos of everything backwards.

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Today, the Boss had two major exam results to report to me. An EEG and a VEP. Neither were all that pleasant.

May’s EEG still shows epileptic activity, which didn’t shock either of us since they have all shown that. What did shock us was when, as I described some of the twitching that concerned me, May actually demonstrated it to him for the first time.

Her arm shook and the small muscles around her eyes spasmed. “That’s it!” the Boss cried. “That’s a seizure!”

If he is right, May has been seizing every day, many many many times a day for as long as I can remember.

Next week, May will be admitted to the hospital to try a variation on the vitamin B6 she currently takes twice a day. The hope is that this new supplement, Pyridoxal-phosphate, will succeed in controlling her seizures where the other medications have failed. She will be admitted because there is a chance she will fall unconscious or stop breathing if her body, in need of B6 all this time and not metabolizing it, suddenly receives it.

The good news, as he explained it, is that she is not having major, catastrophic seizures. She isn’t losing consciousness or ceasing to breathe or losing entire control of her body. It is a momentary disturbance that is unpleasant and worrying, and isn’t helping my already half-brained baby to concentrate.

Next, her Visual Evoked Potential exam results. Again, it was pretty much what we expected. Her eyes are sending signals to her brain. The signals are being received as quickly as they should. But, the signals themselves are weak, meaning at some point along the way or when they arrive, the signals are not understood.

It is possible that in the future May’s sight will improve, but at the moment it is very weak. He agreed to refer her on to a pediatric ophthalmologist who, to be honest, will probably tell me the exact same thing – but hey – it’s worth a shot.

So, any good news Mama? Yes!

May’s head is growing – slower than a normal baby, but at a slightly increased rate for her.  He thought she was very alert and responsive. The tone in her legs was almost nonexistent. Her head and neck more controlled. Her eyes concentrating better (even with the test results).

And, her toes were adorable enough to blow raspberries on. That’s true. He is a sappy, baby loving doctor.

Another plus today was that the most expensive nursery in the world did not make me jump through hoops. They were so lovely, friendly, professional and concerned for May, that I may take out that second mortgage so that May can go there. I was totally won over.

Good thing too. The childminder tells me this weekend if she thinks she can provide proper provision for May. If she says no, there will be no decision. May will be attending the most expensive nursery in the world.

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I never thought I’d be one of those mothers that begs and pleads and prays their child gets into their school of choice. As a teacher, I know there is no such thing as school choice. But, then, I also think that most schools fit the bill.

But, I didn’t bet on having a brain-damaged daughter. In the world of the brain-damaged, there is no nursery of choice. Out of the hundreds in our area, five fit the council’s strict requirements. Of those, four have waiting lists up the wazoo.

Which leaves the most expensive one. Second mortgage expensive – and I don’t even have the first mortgage.

Fast forward to today and the result is me, embarrassing myself on multiple fronts. Like insulting nannies with ridiculously low offers at salaries. Or, even looking for a nanny at all. Or, brown-nosing childminders. Tonight, I emailed a childminder, who I met today and liked. She will read my email and think I feel she is the most maternal, philanthropic woman on Earth.

I want May to have it all. All her specialist equipment. Her therapists to be allowed to visit her at nursery. The childminders trained up by May’s team. But, mainly, I want people to be kind and want to work with May.

So, I jump through the hoops and hope for the best.

Tomorrow, along with a routine hospital appointment with The Boss – the kind of routine appointment that will tell us if she can see, if she is having seizures and if he thinks she is making progress developmentally – I will go to the nursery, with May’s physio, for a risk assessment. That’s like an entrance exam for the brain-damaged.

So, nothing stressful about tomorrow then. Just an average day in the life of my little May.

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Cadair Griffin

My husband and I went to university together to study for the same degree. Lived in the same halls of residence. Our assigned university passwords were exactly the same, only two numbers had swapped places.

Almost 10 years later, and we are both teachers of English in inner-city, London high schools.

We even both had a baby girl born with brain damage! (now, that’s just spooky)

Today, he published his own blog as well. Only, his is better written.

If you like Science Fiction of all kinds, especially the writing of HG Wells, Cadair Griffin is the hip, new hang out for invisible men and morlocks. Happy reading!

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Be patient. This is all leading somewhere (a phrase that should be the official motto of this blog)

Living in Britain means my life has changed immeasurably. While it is often hard to put a finger on the exact differences, the English language itself provides some clues. For example, Americans are often thought of as more artificial than the rest of the world, but it is the British that show their true saccharine nature through their deviations in English. In the land of the Oxford English Dictionary, they have created cutsie terms such as a bickie (for biscuit) to be dipped into their tea while watching the telly (television).

As a high school teacher of English, I devoted many years to learning and applying the “British” forms of English. But, in this blog, read on both sides of the Atlantic, I have steadfastly stuck to American English. I probably slip up, in fact, I’m sure I do – anyone would who has immersed themselves in another country for over ten years – but, I try my best to stay consistent.

And that, my friends, is why I have written “colored” instead of “coloured” in the subject heading of this entry.

Finally, the point, the real point, of this entry – May has a visual disability. She isn’t blind. She can differentiate between light and dark, fix on objects (like our eyes) and moves her head and eyes towards sounds, even behind her – which shows some spacial awareness.

But, she doesn’t follow objects with her eyes. She is never excited by visual toys, even those that flash so violently I have flashbacks to the terrible nightclubs of my youth.

The fact that her first visual therapist was dismissed two months ago we first met May’s new therapist yesterday, doesn’t help. Nor does it help that, due to technical difficulties, her visual brain scan had to be redone on Monday so we have yet to know the results or receive the referral to a specialist. Nor does the hefty pack the government gave me help, one which medical professionals of all kind keep pressing on me as being so helpful. It isn’t.

Because of all this, I have become May’s visual therapist – along with everything else – I buy black and white toys, string Christmas lights up in May’s room and use pens with colored lights in the tips to exercise May’s eyes.

Will it help? Who knows. Like with most neurological problems, I am not an expert, but I’m not satisfied to wait and see if May’s visual problems fix themselves.

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I feel like George Lucas with his Star Wars saga. Parts 1 – 3 are over, then later, I discover that I never actually finished filming Part 1, so I begin again and it is terrible. Really terrible.

Two days ago, the council phoned me to explain that May’s equipment and one-on-one care for nursery was approved. We hadn’t actually applied for one-on-one care for May, so this came as a surprise for me, but a welcome one.

“Wonderful!” I said, delirious in the idea that someone had done something extra for May that I didn’t even remember applying for.

“But, having approved this, I was wondering what you plan on doing for the rest of May’s care? Our limit on one-to-one care for any child is 15-hours and I see here that May will be attending for nine-hours a day.”

My delirium burst. “What do you mean?”

The woman explained that if they agreed May needed one-on-one care, than she needed it all the time. One-on-one care is expensive and the nursery would be liable if they didn’t provide it and something happened to May in its absence. Someone had to pay for one-on-one care for the rest of May’s time in nursery.

“With your child’s needs,” she said, “she just won’t react to danger in the same way as other children.”

“May is only nine-months old,” I said, “if there is a fire in the nursery, none of the babies are going to run out of the building.”

The woman from the council did not seem entirely convinced this was an appropriate analogy. She agreed to speak to the nursery and discuss the situation. Later, I received a phone message from the council. The nursery claimed they’d never heard of May.

I assumed that this was a mistake. I phoned. No one phoned back. I called again today and the manager spoke to me. “The thing is,” she said, “we only have May’s initial paperwork. We haven’t contacted you yet to say a place is available. We haven’t invited you in to put down a deposit.”

My heart sank.”But, you said that it wouldn’t be a problem. You told me. Don’t you remember us?”

“Yes, I remember you. But, you see, we have a waiting list. At the moment, no one is leaving and even then we need to work through the list.”

I stammered with incredulity. “You told me the waiting list wouldn’t be a problem for us. Why would you tell us that?”

“I am so sorry, but I have to adhere to our system.”

My frustration and anger rose. “Why did you make such a promise to me if you couldn’t keep it? You haven’t just made this awkward for me, you have made it horrendous. What nursery will have a place for May this close to me starting work?”

“I am sorry. We can keep her on our waiting list.”

“But, how will I find a place for her? No nursery wants her,” a sob cracked through my veneer. “My daughter is so sweet and no one wants to help her.”

What am I meant to think about this? My husband thinks they heard about the one-on-one care – which incidentally the council agrees is unnecessary until May is older – and decided not to take a chance on her. It is hard to know.

Regardless of their reasoning though, making a promise to the parent of a disabled child and then reneging on it with weeks to spare, is reprehensible.

Luckily, the only other nursery we found that would take May, the very first nursery we went to in fact, will most likely have her. I meet with them in a week and a half – following our visit to Wales over the half-term holiday – to see if May passes their risk assessment. The manager was confident that she would.

My relief was considerable. And, hopefully, unlike the Star Wars prequels, this nursery search will be a big success. And over.

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Kids these days. They turn 9 months old and they think they know everything!

At six-months, May was pretty amazing. Outstanding. Possibly a prodigy. But, now at nine-months! Incredible cognitive and physical feats abound!

May can now:

– kick for the hell of it

– suck on a sippy cup

– pretend my knee is a horse and she is the rider

– laugh hysterically when someone says, “Pee-Pee!”

– suck on her hand with a 50% hit rate

– eat just about anything (unless she hates it and spits it out)

– make bubbles with anything pureed

– squeal with delight at any silly sounds

– speak in tongues (“ah-goo! ah-gah! vvvvvvv-oo…”)

– push herself up on fully extended arms

– enjoy splashing in the pool

– chuckle when she hears the first notes of a favorite song

– grip a biscuit without dropping it as she thrusts it at her mouth

– master advanced calculus

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