A bit of praise…

Two incredible things happened this week that reaffirmed my faith in medical professionals.

May had a major meeting on Tuesday. I phoned May’s physio in advance to talk me down from my heights of anxiety. I didn’t sob or bite my fingernails to the quick. It was more like I was channelling Woody Allen.

There was a lot of pleading and jokes at my expense, created by me. I begged her not to let me hear a phrase such as, “May has the mind of a 2-month old, in the body of a six-month old!” Hooray!

May’s physio is reassuringly self-assured. She also indulges my manic nature, somehow managing the feat of laughing with me as opposed to at me. She chuckled and said, “Don’t worry, Stacie. That’s not going to happen. It’s not that kind of meeting.”

And, she was right! Instead, the neurologist on May’s team asked my husband and I what our concerns were and how we felt May was doing. And, no one was negative at all. Everyone was pleased with May’s progress. The neurologist, a sprightly Irish woman, said, “Oh, she is turning into a little lady!” Which obviously delighted me, as all references to how adorable my daughter is do.

She also went so far as to email the Boss and relay our concerns about May’s seizures and medications, and in an amazing feat of medical chumminess, he responded to her that evening!

As if those achievements weren’t enough, today the Developmental Vision Clinic at Great Ormond Street phoned me. There’d been a cancellation, and would May like an appointment 10 days from now?

Yes, yes, yes!

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Father’s Day

Apologies in advance to all the other fathers out there.

You lose.

My husband is the best.

Here’s what he taught me this year:

– I can’t do it all. Possibly the most obvious statement of all time. I can’t say I’m a complete convert.

– But, if I am capable of more than I imagined, it is because he is by my side.

– In the worst situations, there are moments of comedy genius. (May thinks he is a professional comedian.)

Incidentally, when I told him I was writing the sappiest post ever and it was about him, he gave me the finger.

I love him!

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This week I’m… giggling!

Giggle! Heehee! Hahaha!

All week it’s been Giggle Central here.

I don’t spend all my time stalking government officials in the hopes of them changing policy for the better. My word. That would be crap-ola.

No, here, we try to spend the majority of our time enjoying ourselves. Play and laughter help enormously when trying to get May to do any uncomfortable or difficult activity. Here’s some ways I use it:

– in the bath I play “splashy splashy” with her arms, lifting them over her head before the big splash down

– tickles under the arm which she loves

– silly sounds to distract from difficult stretches (Besides the ring of our telephone, other classic winners: hissing like a snake & choo choo.)

Recently, May is loving her special (Dr Evil) chair. Nothing is more fun than sitting in the chair, eating pureed squash while kicking her legs and knocking the spoon with her hand as it comes towards her face. Hilarious!

It doesn’t get better than that.

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Some progress…

Progress with my fights, as opposed to May’s progress – although I will need to update the blog with that as well. She is incredible. Her latest thing is to react with hysterical giggles every time the phone rings. It is so much fun that we keep calling our own line to make her laugh.

May’s referral to the Visual Development Clinic at Great Ormond Street is going through! I don’t believe in miracles, but do hope they will be able to shed some light on what May can and can’t see, so I can help her better with her vision.

Also, Tessa Jowell, MP, emailed me that she has contacted the Executive Director at the Lambeth Children’s & Young People’s Service regarding the restrictions placed on parents of children with complex needs choosing a nursery in Lambeth. We await her response.

In the meantime, I bombarded Mrs Jowell and Cllr Peter Robbins again today with what I believe is an even more pressing issue. See my email below:

Dear Mrs Jowell / Cllr Robbins,

I appreciate the support you are giving my family in regards to nursery places in Lambeth. It is an issue that does not only affect my family, but many others across the borough.

Perhaps even more urgently though is an email that was sent from ***,  Childcare Adviser for Community Children’s Services in Lambeth to every nursery in the borough. In it, she says that they will not take any additional referrals to help children with physical, mental or learning disabilities whilst they are in childcare. This includes children with autism.

They claim that because of the new government, they are unable to fund anything more than the 90 children already on their books.

This is shocking lack of foresight. If children do not receive the support they need when they are young to help them gain their independence, they will become a far greater burden on the country later. In some severe cases, includes children who require specialist equipment so they can attend nursery at all. Without it, their parents will not be able to return to work until that child is five-years old.

My daughter is already on their books, so she will not be affected, but many other children and their families that you serve will.

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Who is next?

The official investigation into May’s case is over. They claim May’s one-on-one support was never approved, but they will reassess her needs. I assume that they will approve it at that time. If they don’t resolve this swiftly and in our favor, I’ve already told them we will sue for the funds.

Like in every other situation regarding this, from when they cut her funding to writing the report, we, her parents, were not consulted at all. No reference to any of our conversations, nor the nursery’s, nor May’s team, were included in the final report.

I would call the report a selective truth at best.  The manager assured me they kept very accurate records on every conversation, email or letter sent, but, in fact, that doesn’t make a bit of difference if they are not included in the report.

In May’s initial application, one-on-one support was not requested, which is the only truth they have a slippery hold of. Was it never approved or was it, as we believe, that they discussed May’s condition and approved it because according to their expert opinion May did need it. And, now that the coffers are bare, May’s funding has disappeared.

This was back in February. Being new to having a brain-damaged child, I assumed the experts knew what they were talking about when they said May required it. Thankfully, besides their emails and conversations regarding it, I also have this blog as an official record of their failings.

It gets worse though.

If you live in Lambeth, like we do, and have a child with complex needs like May and are not on the books to receive funding – get ready. Just over a week ago, an email went around to all the nurseries in the borough saying that no new children would be helped financially with equipment and one-on-one support. This includes all under-5s with serious physical and mental disabilities, learning disabilities and autism.

In the end, May should get her funding, but what of all the other children?

It is an especially emotive issue for me now. A year ago, I brought May home from the hospital. After the initial elation passed, I felt terrified. How was I meant to help my disabled daughter gain independence and enjoy her life?

I can’t imagine how terrified I would have been, if on top of everything else, I didn’t have external support. If I knew that if I returned to work – and incidentally, my landlord might have something to say about that – no nursery would take my daughter because they would not have the means to support her.

The new political climate is not going to benefit families like mine. In a recession, there is an easy excuse as to why the most vulnerable children in the country will receive nothing.

Families like mine are only a few people dotted here and there across the country. We are not large, charitable organizations – nor do we have the backing of huge political or corporate entities. We are the few and we are easy to brush aside.

But, without that support, children like May will not learn the skills that will save them from being an enormous financial burden to the country for the rest of their lives.

Lambeth will save a few pounds now. But, don’t be fooled. It will cost.

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This week: what I want to say and what I can say…

… are two different things.

There is an official inquiry into my daughter’s case. The decision will be taken in the next two weeks. In the meantime, I learned some other, very uncomfortable, things about funding issues that could affect a lot more children than May, but until my daughter’s case is over, I’m keeping mum.

Does that make me a coward or a good mother? A couple of weeks will pass and then I will return to fight another day. Because, if anything is a sure thing in this world, it is that I will have to fight.

I don’t like to fight. I don’t find it satisfying on any level. What I want is for people to do their job the right way, the first time, without me having to ask twice (or three or four times). But, they don’t, so there we go.

Here’s some other things I’m waiting for this week:

1. A referral by the Boss to the Developmental Vision Clinic at Great Ormond Street Hospital. A lead that came from the reader who recommended Cortical Visual Impairment. From this, I emailed the author Professor Roman, who gave me the name of a professor in Scotland, who told me about the clinic. It only took me a year! I still felt pretty triumphant.

2. A response from Tessa Jowell, MP to my letter about the restrictions placed on families when they seek a nursery for their disabled child. I wrote her three weeks ago and emailed the letter again over the weekend. But, I’m in Wales, visiting my husband’s family, so maybe there is a letter waiting at home for me now?

3. A response from Ofsted. I made a formal complaint a month ago against the nursery that refused to prioritize May. They have no record of the original letter. I had to email them a second one yesterday.

I spend less time fighting the system, and more time fighting bad filing systems.

Finally, to cheer us all up, here is a photo of my daughter playing. Cortical Visual Impairment advises parents to stimulate their child’s vision with what they can see, as they will naturally build on that and grow to see new things. This is in total contrast to other therapies, like physio, that challenge her to do what she can not.

May can see reflective shiny things, so I hung tiny disco balls from the mobile above her bed and, now, lay her down on these wonderful, silver sheets that make her squirm with delight.

Also, a photo of May eating. She is holding a spoon. It’s part of her therapy. She hasn’t graduated to using the spoon yet, but as you can see, she doesn’t seem to care.

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