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Archive for May, 2010

This week my prevailing emotion was anger. With May, rather than assistance, it is as if systems are put in place to make our lives more difficult.

I just fight and fight and fight those systems. I get what I need for May in the end, but I get it through conflict and begging. I get it after months, rather than days. I get it, but it comes at a cost double what other families pay. I don’t make one phone call; I email, write, AND call, and then I have to call two more times just to make sure it has all gone through. And, it never has.

This week is a perfect example. Weeks ago, Lambeth approved May’s application for one-on-one care for 15 hours a week at her nursery, Dulwich Day. They didn’t just approve it, they also directed the nursery on agencies that could supply the care.

Dulwich Day hired someone specifically for the role and then, when they emailed Lambeth to ask how they get reimbursed for the costs, this is the email they received back:

Unfortunately there is no budget now to pay for 1.1 support.

Sorry!

Regards

No notice. No warning. No contacting us, May’s family, at any point either, not even since to inform us.

I’m lucky May’s nursery is so supportive. The manager there is fighting this on our behalf. And, May’s key worker is also on the case. Everyone is stunned by how negligent it is to pull one-on-one care for a child with complex needs without any warning whatsoever.

And so, if you read the letter I sent to Tessa Jowell (last entry), the statement about Lambeth making our lives easier is officially obsolete.

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As promised, here is the letter I sent to my MP, Tessa Jowell. (For you Americans: an MP is like a senator except they serve a much smaller constituency.)  I shortened the letter as many of the details are already here on  the Nursery thread on this blog. Having said that, it is still very long, so if you make it through the whole thing, congratulations.

Dear Mrs Jowell,

My daughter, May, who just turned one-year old, is a special needs case. She was born with severe brain damage. She is developmentally delayed, but a happy baby making incredible progress.

Up until our search for a nursery, our experience of dealing with this very challenging situation has been made easier by Lambeth. Her team at the Mary Sheridan Centre are outstanding and Lambeth has quickly approved and acquired any equipment we need.

In regards to a nursery place, our case is much like any family in Lambeth who has a child with complex needs. Lambeth requires us to stay within the borough to receive specialist equipment and access to essential therapists. In addition to that, to ensure funding, they asked us to choose a nursery with an Ofsted good or outstanding rating.

[Because of this] out of hundreds, we were left with one nursery, the second most expensive in the area.

I cannot see how this is anything but discrimination.

But, our story gets worse, because though we put ourselves on waiting lists, even then very few were welcoming to our daughter. Specifically, I wish to highlight *** attached to the “Outstanding” primary school on your road.

We approached *** on the recommendation of Lambeth council who told us that children with special needs should be prioritised on waiting lists. In fact, ***’s own literature refers to this: “We operate a waiting list, from which places are allocated on a first come first serve basis. However, families with additional needs may be given priority.” They even go so far as to claim that their aim is: “to provide places for… families with additional needs.”

Despite a new building complete with handicap accessibility, in November 2009, *** told me they were uncertain they could accommodate May, who is only a baby. Before she would prioritise, or even admit May, the manager required a Statement of Special Needs to be prepared by Lambeth.

No other nursery made statementing a requirement for being accepted, let alone being prioritised. Regardless, requiring a statement is a ‘catch-22’. Lambeth do not statement children under-3. Several months later, the manager agreed that one of May’s team at the Mary Sheridan Centre could write a report vouching for her needs.

Two months later, and with no further word from ***, I phoned and was informed that May would not be priortised. I was told it would be “unfair on the other parents.” I’m not sure it is possible to get across in a letter how demoralising it is to learn, so early in May’s life, that an educational institution would tell us that prioritising us would be unfair to other parents. I never thought I’d be in a situation where someone would imply that May’s disability could ever put us at an advantage.

We deserve the same choice as other families. Lambeth do not subsidise the fees, only her equipment and support, and our one “choice” is unaffordable for us. And, that [*** turned us down because] both my husband and I work, seems to be the same reason 99% of parents place their child in nursery to begin with.

The manager now required yet another hurdle for prioritising, a referral letter from a medical professional. Though she discouraged us yet again; she wrote that even if we did manage this, May’s application may still be denied or trumped by a child with more severe needs than her. However, in earlier conversations she told me that there are no children with more severe needs on the list than May. I asked to see their policy regarding prioritising, but the manager told me there is none, save the nebulous statement that I quoted above.

I would appreciate your consideration of the following:

1. That funding and therapists may be allocated to a suitable nursery, located a reasonable distance from a family home, even if it is not within Lambeth;

2. That state nurseries in Lambeth, like *** attached to a primary school, are required to be transparent about their policies regarding priority and admissions of special needs children.

I do understand how popular *** is and I have no objection to there being no availability for my daughter by the time we needed one. However, I do object to a nursery, under the jurisdiction of the borough and one that advertises as its aim that they wish to provide places for families with special needs, being allowed to continue to discriminate against families like ours.

My family’s situation is a very difficult one. I certainly do not want to force anyone to work with my daughter. Her progress is too important to insist *** or any other nursery works with her if they don’t wish to.

But, something needs to be done, either to change the system in Lambeth so that families like mine are allowed to search beyond such restrictive criteria or to require nurseries to abide by the discrimination acts they work under. Unless nurseries are required to be transparent about how they choose their pupils, children like my daughter – a very sweet child with disabilities – will lose out.

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She is free! She is brave!

These are things we already knew about May, but now they are official. Today, May received her American citizenship.

True story, from today at the American Embassy, London:

Me: Hello, I’m applying for citizenship for my daughter.

Them: (frowning) May I see your paperwork? (Me passes over paperwork.) We Americans are not sure we want another bouncing baby in our country. May we see the baby?

Me: Of course. (Me raises baby.)

Them: (Them cheers.) She is adorable! Congratulations. (Stamps paperwork.)

If you doubt the veracity of the story above, refer to the photos below. They are all from our big day. And, May is seriously cute in all of them.

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It’s not as miserable as it sounds. I’m sitting in the dark. In the bathroom… with a giggling baby on my lap.

In the summer months, it is almost impossible to find a space dark enough to stimulate May’s eyes with lights. So, we’ve retreated to the bathroom, where no light shines.

Together we sit on the toilet (it is very glamorous in my household) and we play with all May’s toys that light up. Some play songs. Some are totally silent and just light up in pretty blues and pinks. Some have lovely buttons to press, and with a little guidance from Mama, May’s lights them up herself.

I also:

- use a solid color mat underneath a toy when May is playing in her chair

- tied black and white contrasting bed bumpers to the side of her cot

- attached tiny disco balls to the mobile over her bed (one of the only things I think she actually looks at besides her own hands – apparently children with CVI see movement better than still objects)

- turn on a lullaby, light show on her ceiling at night when she is settling down for sleep

- wrapped our Christmas lights around her bed instead of using a night-light

Will any of this work? Who knows. In fact, there is a chance that this is too much visual stimulation for May. Medical professionals have both advised me to flood her with stimulation and remove it altogether except for a single object on a black surface.

To settle the debate in my mind, I ordered a book recommended by a reader called Cortical Visual Impairment (CVI), written by Dr. Christine Roman-Lantzy. Dr. Roman-Lantzy has 30 years of experience working with CVI in children. She won The C. Warren Bledsoe Award, which honors outstanding literature of the field of visual impairment and blindness, for her book.

In previous research, I learned that many children with CVI recover (or in May’s case, gain) some of their sight. So, I hope that the work I do with her now – in the dark, in the bathroom – will help her.

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What is the difference between a doctor and a secretary?

That’s not a joke.

This week there was no difference. Both asked after my daughter. Both offered no new information whatsoever. In fact, as far as services go, the secretary at least provided me with the form I requested.

On Monday, we met with a neurological ophthalmologist. He dilated May’s eyes, determined them structurally sound and revealed that the nerves connecting them to her visual cortex were severely underdeveloped. Then, he told me that May’s sight was fine but that she has no ability to understand, identify or remember anything she sees. He spoke in the same tone as a customer service rep who has just been asked for the 1000th time how to power up a cable box.

“Is there anything we can do to help her?” I pleaded.

“Nothing that you wouldn’t do for a normal baby.” And, that was that. Nothing. I find it incredible that May has a multitude of therapists for her physical needs and zero for her cognitive. No one has any advice about how to help her in the most essential way she needs.

While I fought back tears with my virtually blind daughter cooing on my lap, the doctor continued briskly, “So, shall we make a follow-up appointment in 9-12 months?”

On Friday, my husband took May to the Genetics Clinic at the same hospital. Six-months ago they tested May’s blood to investigate whether there were any genetic abnormalities that led to her brain damage. As I already endured one traumatic appointment this week, my husband took off work to learn whether our combined DNA resulted in May’s injury – an implication that would not just reflect on May, but any possibility of future children for us.

Here is how the meeting went. The doctor forced my husband to tell the tale, yet again, of the trauma of the past year, from pregnancy onwards. (Isn’t this what medical notes are for?) Then, the doctor drew our family tree and when it came to my husband’s father, who passed away, he put a big cross through the box.

Doctors are not unfeeling, but they are detached. I would chalk it up to professionalism, except that they can be so unprofessional.

Doctors severely underestimate how much strength it takes to wake up in the morning and haul your baby across town for an appointment that will never provide you with any good news. Often at these appointments, like on Monday, I feel like the doctors think we are wasting their time.

But, what of ours? What of the nights I spent anxiously awake this week wondering if my DNA was the cause of my daughter’s injury? Or, the other nights, when I lost sleep wondering if this doctor was going to advise against us ever having another child?

At no point during the meeting did the doctor tell my husband the results of the genetic testing. He did, however, draw a lovely tree and symbolically kill off my husband’s father.

The next time I want something done, I’ll go back to the secretary.

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Forget making a mess. In honor of Mother’s Day (USA) May has better news to report. This week I’m… rolling!

Last night, May rolled to the side, over and over again. With any luck, she will continue…

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We struggle to find ways to encourage May to use her hands as they are one of her weakest area. The palms of your hand is very sensitive, but imagine how much more sensitive if they rarely touched anything. When I press her hands into or against things, often she recoils.

It is a vicious circle because the less May uses her hands, the more difficult she finds it – but the more difficult she finds it, the less she wishes to use them.

Her nursery and Small Steps are making real headway here though. And, here is the proof!

One child. Covered with chocolate.

Other messy play this week was on a more metaphorical level. My mess of emotions leading up to a meeting with The Boss was unnecessarily traumatic as he was very encouraging. May’s EEG showed less seizure activity and he noted May’s progress: better tone and new sounds. “Lovely vocalization,” he remarked cheerily, “She’s having a little baby conversation!”

And, finally, I got my hands dirty by starting my official complaints procedure against the nursery that refused to prioritize May. This week they responded to my letter with one of their own. It was very short and commented that they could assure me they “follow all the correct policies and procedures.”

Except, they don’t have any policies or procedures regarding prioritizing. Which is exactly the fallacy I noted in my complaint to Ofsted, the government body that investigates schools. On Monday, I send off a letter to my MP as well.

Messy play just got dirty.

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