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Today, we took May along to Livity School, the special needs school that serves my area. I asked to visit. But, like many things in May’s life, even though I asked, I had no desire to go whatsoever. If my husband couldn’t have gone with me, I would have stayed at home. In bed. And, pretended it wasn’t happening.

But, he did show up to pick us up. He had to wait while I fumbled around, dragging out the time so that we were late. “What’s wrong?” my husband said, as I swapped shoes for the fourth time.

“I just want to look okay,” I said, swallowing back tears. I was reminded of the times when May was an infant and when people would come to visit, I would dress nice, wear makeup and put May in something cute. We couldn’t do much, I’d think, but we could at least look like we were trying. And, that’s how I felt today.

It’s not such a bad idea actually, to suit up before a challenge. Fire fighters do it. Doctors do. Ballerinas. And, May and I.

I need not have worried. I’d already heard reports from various members of May’s team, praising the atmosphere of the school and dedication of the staff. Some of May’s team even do days at the school, working with the kids. It is comforting to know that May’s team will continue to work with her, even when she is there.

Here’s what I didn’t expect. It was a school. A good school.

Maybe that sounds ridiculous. But, I expected I would walk in and see children of varying disabilities, some far worse than May and looking uncomfortable, being stimulated and developed but in therapeutic ways, not in educational ways.

I hate to say that my aspirations for May are so low. But, I was surprised to be told that the children in the reception class (that’s the youngest kids, aged 3 – 5) were learning their numbers. I want May to learn to sit. It never occurred to me that someone would teach her to recognize numbers.

There were other nice surprises at the school. The hydrotherapy pool is an actual pool. A big, children’s pool – and we saw a severely disabled girl in absolute bliss being swam around it by two members of staff. They had a garden where the children grew vegetables, and a soft play room and a sensory room that contains all this amazing equipment I know May will respond to.

So, for us, it was a very positive introduction. My husband said he’d feel very comfortable sending May there. I would too. And, May liked it as well. When we arrived the reception class were in the assembly room listening to music and she was craning her head around to hear. I think she is ready to join in, even if I’m not quite there yet.

It’s the final countdown to Baby Two’s arrival! Follow the last month of Mama Lewis’ pregnancy on BabyCenter, or via Twitter!

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About a year and a half ago, we started the long and completely demoralizing road to finding May a nursery. We contacted over 50 childminders and nurseries and all, bar one, turned her away. Some placed us on waiting lists. We never heard back from any of those nurseries. In fact, we soon found out that at least one of those nurseries didn’t even have a waiting list.

However, today, I received a phone call from a nursery that put us on their list. We liked this nursery. They seemed unfazed by May’s needs and the nursery had a huge outside play area with lots of happy children running around it. We couldn’t ask for more really. If only they hadn’t had a waiting list…

At the time, we believed they intended to give May a place when one opened. But, after a year, not only had we forgotten about them, but if pressed we would have said they’d gladly forgot about us as well.

Turns out that wasn’t the case. Today, I received a phone call saying they could offer May a couple of days a week. Were we interested?

I was so taken aback by the offer that I asked for some time to consider it. I don’t need to consider it – May has a nursery place now and we wouldn’t remove her this far in.

Oh, but, how tempting! May made it in! I wanted to say “yes” just to fully complete the cycle of acceptance.

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Every child in Britain with special needs, minor to major, needs a Statement of Special Needs to receive funding, equipment and therapies in school. In recent weeks, everyone involved with May contributed a statement and these will be presented at a panel (of people who never meet May) who determine to what extent, if at all, she needs any of the above. Statements start at three. May is two.

Regardless of this fact of life, May’s team encouraged us to apply for Statementing and already we have been told that we will probably get it. Why? Because May is already in a school setting – nursery – and, more importantly, her needs are so great and so obvious there is no disputing them.

At times like this, I don’t know whether to feel grateful or cry.

We still have months to go before we find out the result, so there is a chance that the prophets of certainty are wrong.

In the meantime, we are already going to check out a nearby special needs school that starts taking children at three. And, here again, I was told that they may admit May early. Boo/Yeah!

When I visit the school with my husband in a couple of weeks, it will be hard. He wants to come, but, for my own sanity, I wouldn’t step through the doors without him. As I meet the teachers and stroll through the classrooms, I will not be thinking, “Wow! What amazing facilities for May!” I will be thinking, “Wow. My daughter is so severely brain-damaged that we are forced to send her here.”

It doesn’t matter how spectacular a place it is or how welcoming or how much progress I can see her making there – it will be hard. I spend 95% life avoiding situations where I am forced to confront the enormity of May’s problems. I’m not in denial – I deal with May as she presents herself to me on that day. The “work” I do with her, I probably view in the same way as most parents see exploratory play: fun, enriching and stimulating. Not hard therapy or a medical necessity.

The great thing about sending May to a special needs school is that everyone is trained to deal with her specific problems. Therapists will visit her at school every week instead of once or twice a month. If they want to try May on new equipment it will be there. Also the facilities are amazing; they have a sensory room, a soft play room and a hydrotherapy pool. That’s the bit that sold me. May loves swimming.

Again, it strikes me that no matter how much I do with her at home, I could never provide that kind of environment. I don’t have the expertise, the equipment or the years of experience.

Which begs the question: if these things are so important for the physical and cognitive development of a brain-damaged child, why are they not available when she is a one-year old? There is very little known about brain-damage in babies, but what is known is that the earlier therapies start the more likely are the benefits.

I suppose now what I hope is that the Statement comes back quickly, the school takes her on in September and I manage to accept another reality check where May’s future is made official.

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Earlier this week, Riven Vincent announced on Mumsnet, an online forum for mothers, that she made the devastating decision to give up her daughter into the care of social services. Social Services would not provide her with more than six hours a week respite, and she desperately needed more.

On The Guardian’s Comment is Free page, I wrote about her plight, one very familiar to me.

In Britain, we are dependent on the goodwill of the State. My local council of Lambeth has to make savings of nearly £80 million over the next three financial years.

Many people wrote into the site lambasting the Conservative-led coalition government or Lambeth or parents like me, for complaining at all.

I wish I had the space in those 600 words to explain the complexities of May’s funding issues. Lambeth has both restored May’s funding, while, with the other hand, they will remove it again in just a couple of months time. Our fight to secure our daughter the services she requires has forced us to contact our MP Tessa Jowell, government officials in Lambeth, along with the media.

We were lucky. Other families in Lambeth, especially those new to the system, may receive no help at all. One of May’s doctors told me last week that she has administrators telling her that “children are not disabled enough” to deserve the money and resources available.

It doesn’t have to be this way. Many people will pass the buck, but in the end, like I said in the article, if May and children like her are not helped now, they will be far more dependent on the State in the future.

You can read about all the highs and lows on this blog if you follow the nursery thread.

Finally – I can’t let it rest that some people reading my post will think May is miserable, while in reality sometimes I find it difficult to feed her – not because she is disabled – but because she is laughing so hard, I can’t get her to shut her mouth.

Here is just one smile in a million, taken only a week back (Thanks Nana!). I can assure you there have been a million since too.

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After all my bluster, which isn’t too surprising considering the history of such things in our lives, it turns out the review was just a formality. The funding has passed and May will have it until it ends in March, as originally told.

Also, contrary to what I initially heard, the nursery was informed of this December review date, so I can’t blame that on Lambeth. May’s team was told the funding would end in March, which is still true; with March on their minds, I think everyone assumed there wasn’t a review in between.

Unfortunately, in this whole situation, we, May’s parents, are kept as outsiders. We never saw the paperwork that said the end date was in December until this week; nor, were we at, or could we influence the outcome of the review. When you have a disabled child, you relinquish some of your parental responsibilities to other people.

I can’t say what I would prefer: to be more involved in the administrative mess that May is so dependent on, or less.

In this case, we can all breathe a sigh of relief. The funding is there. Another unnecessary emotional trauma is over.

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I can not convey the deep and long intake of  breath, the frustration that twists my stomach into knots, the agonizing fear every time something like this happens – fear that my daughter’s safety will be compromised by the negligence of one administrator. An administrator who has no contact with my daughter; who has no concern or understanding or interest in her well-being; who is just doing a job and not doing it very well and probably isn’t all that concerned about that.

The same woman who so disastrously handled my daughter’s case previously, contacted May’s nursery on Thursday to inform them that May’s one-on-one funding will be expiring this Tuesday.

Tuesday they will hold a review about the expiry. Perhaps that sounds like a ray of hope to some readers. What will you think after the following?

Until Thursday, we were all told it would be ending in March. Until Thursday, we didn’t know that the original date for the review was actually two weeks ago but had been rescheduled due to the snow conditions. Until Thursday, the nursery wasn’t informed of the paperwork about May’s care that needed to be filled out since September; four months of paperwork to be in their hands by Tuesday.

I will only say this. May is never the problem. Her condition is never the problem.

Administrators are the problem.

Updates to follow…

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Lambeth responded this week to my complaints about nursery places and support, which I made via Tessa Jowell, MP, and Cllr Peter Robbins. The letter is two sides and single-spaced, so I have abridged it quite liberally as follows:

Allocation of funding for childcare:

You are right that initially this was only allocated… where a good or outstanding Ofsted rating had been awarded… Increasingly the government is enabling local authorities to use their own judgments about settings… although this will provide a higher number of settings for parents to choose from it will still limit the choice as we need to ensure that these vulnerable children are in a setting where they receive the highest quality care… I do appreciate that because you live at the edge of the borough this limits your choice further but unfortunately we are not in a position to fund places in other boroughs at present.

In regards to May’s one-on-one support:

I am aware that some issues arose about May’s needs for one to one support and equipment at the nursery she attends… the keyworker for May is meeting with you next week to develop a family service plan for May related to this needs assessment.” She continued along these lines for several more sentences, but said nothing about Lambeth originally giving it their approval or how, abruptly, the funds disappeared.

Finally, in regards to the nursery that refused to prioritise May:

It would appear from our discussions with the Children’s Centre Manager that there has been a misunderstanding… She was seeking more information about May’s needs and did not mean to imply that a Statement of Special Education Needs was required for May to be placed on the waiting list. At the time of applying there were a number of children on the waiting list and [she] understood that May’s needs were being met through her current provision. [They] will continue to consider May for a place as a priority if her situation changes.

Outside of numerous general apologises and vague assurances that issues are being followed up, there is nothing to suggest that they are taking any action to any of the above.

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