This week I’m… heading outside for May’s Big Day Out!

May and I celebrated BabyCenter’s Big Day Out by getting out in the sunshine and not prepping for the baby – due next week – at all.

Yep. I haven’t prepped at all. But really, what do you need besides some diapers, a couple of onesies and some just-in-case-breastfeeding-doesn’t-work formula? Right? Surely babies can shop for themselves. (Suggestions from readers very welcome.)

Besides, who wants to prep for anything when London is in the midst of a heat wave. Perfect for toddlers and mamas who like to sunbathe.

Besides enjoying some glorious weather, going outside is excellent stimulation for May. The sun warms her skin. The wind plays with her hair. The birds sing to her. The grass tickles her.

It is always easier to stay at home with a disabled child. Everything is there! But, if May is any proof, going out provides all kinds of wonderful stimuli for her to enjoy. None of which I can offer her in my flat.

On May’s Big Day Out, she practised pushing herself up on her arms in the grass. She’s much better at this, mainly down to her supergirl lycra suit, of which she was fitted for her third today. All her measurements have gone up! Wonderful news for the little girl who spent an entire year at about the same weight and suddenly, in the last few months, had quite a growth spurt.

1-2-3 and...

...up we go!

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More from the So-Called Experts Crew

Maybe I should have a new tag reserved only for social workers, I’m starting to feel like “so-called experts” doesn’t cover in the slightest the underlying prejudice and superiority towards the families they are involved with.

As a family about to get more involved with social services – I’m going to instruct my key worker help me apply to them for respite care – I wish I had a better impression of social workers.

I’ll illustrate my own personal prejudice with a continuation of a previous story:

Remember this visit? The one a couple of months ago when social workers came to my flat, completely ignored my husband and proceeded to tell me how I needed to clean more?

Those same social workers asked for another appointment a few weeks ago. They wanted the engineer to adjust totally unadjustable, fixed parts of the chair. So, you know, a worthwhile appointment for everyone.

I showed up. The engineer showed up. Where were they?

The next day I received a voicemail message. It was one of the social workers. She was outside my old address – even though I’d given her the new address at that first meeting. She said the engineer hadn’t given her enough time to reschedule the appointment and so she missed me. She showed up a day late, at the wrong address and was wondering why I wasn’t there to let her in.

Two days ago, she called me again. “I was calling about the last appointment? The engineer did not inform me in time about the it. I was wondering when a good time would be to come and see about the chair.”

“Actually, you’re wrong,” I said, bluntly.

“Wha-” her voice turning an unattractive nasal quality.

“You did show up to the appointment. But, you showed up a day late at the wrong address.”

“No, no I didn’t.”

“Yes, yes you did. I have you on a voicemail, calling me from my old address on a day when you didn’t have an appointment and just assumed I would let you into my house. The engineer showed up at the right house, on the right day. You messed up.”

“No, no. That wasn’t me.”

I love that. Irresponsible. Shirking the blame on to someone else. And, a liar to boot. I continued, “Well, either you or one of your colleagues did. I’ve known that engineer for over a year now. He has never missed an appointment. In fact, it is not unusual for him to chase me up about them, so I find it very hard to believe that he was the irresponsible one in this case. Especially, as he showed up.”

She was unapologetic. But, why should she apologize? Isn’t she perfectly within her rights to show up unannounced at someone’s house and expect they will let her in without an appointment, and when they don’t, blame someone else?

I’m trying to figure out what the best way is to complain about this – and any suggestions for people in the know in regards to social services are welcome to contribute ideas.

The engineer is one of those gruff, repairmen types. It is always clear that he and the social workers rub each other the wrong way. That only makes me like him more. Because, unlike them, he treats May and I with respect. He is always making little cooing noises at May, is never late and has conversations with me about the chair, instead of imposing his will.

Good luck to the social workers if they try to blame this on him. I don’t like their attitude of entitled superiority – perhaps they see the families they work for as a lower class or uneducated or socially inept. I am none of these things. According to their job description, they are work for us, not the other way around. I will back him all the way.

I read an even worse story this week: Maggie’s parents over at Maggie and Alice have chair despair. What is the difficulty with just doing your job professionally? Show up to your appointments. Order essential equipment. It really is that simple.

Read more from me about my pregnancy on BabyCenter or via Twitter @MamaLewis1.

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Most despicable article of the year?

Dreaming of how next to scam the British public

How would you describe the British Motability scheme for disabled people and their families?

1. A means by which the most severely disabled people in the country can be transported without relying on the government to cart them everywhere they need to go. These people, who are unable to complete a journey  without the assistance of friends or family, are given the choice of an allowance towards transportation for the year or exchanging that money for a leased car for three years. If they want a nicer car, they pay additional money for it.

OR

2. From an article in today’s The Sunday Times: “A scheme costing taxpayers £1.4 billion a year to provide the severely disabled with a new car every three years… abused to provide tax-free motoring for friends and family… Almost 200,000 (cars) are used by the disabled’s friends or relatives.” Followed by a quote from a conveniently unnamed government source, “These cars are incredible deals but they are often not being used for the benefit of the disabled person.”*

I like quotes that use vague words like “often”. Even better when they aren’t accompanied by the source making such an astute point. But, hey! Who needs journalistic integrity when you can use vague quotes from unnamed sources to disparage the most vulnerable people in society?

I have a few other problems with the article ‘State hands out BMWs to ‘disabled’ in £500m scandal’ – not the least of which is that I can’t remember the last time the State knocked on my door and gave me a BMW. Is that happening? Hello?

I should get one. I’m one of the scumbags described in this article. I’m the non-disabled family member who will benefit from the Motability scheme next year when May turns three-years old.

Are they angry because it costs the tax-payer? Because, I wonder how much it would cost to cart around every disabled person in the country on several journeys every day, lifting them in and out of the vehicle and securing them safely, understanding each and every one of their very specific needs. That wouldn’t cost anything.

Or, are they angry because the government doesn’t have the legal right to insist that disabled people only use the money on cheap cars? Are they angry because there people who have paid the extra money necessary to purchase a BMW on the scheme?

If the government set up a scheme whereby they helped disabled people fund their transport, but then only allowed them to use that money if they bought a Ford, they would be setting up a monopoly. I think the other car companies would quickly find fault with a scheme that poured money into their competitor’s pockets.

But, here is the leap in logic that really makes me sick. The article implies that we are benefiting from our daughter’s brain-damage. May will probably never walk, let alone drive a car. In all likelihood, she won’t be capable of ordering a taxi. That would mean dialling a phone number, speaking and relaying directions.

But, what am I thinking? A BMW totally makes up for that.

Despite how insulting the article is, we have a greater concern: Is The Sunday Times pushing its own agenda – despicable in its own right – or, is this propaganda directly from the government before they initiate ending the scheme altogether?

*I would link to the article, but The Sunday Times uses a subscription service. You’ll have to pay for it if you want to read it in full.

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May’s Daddy Rocks!

I’m borrowing heavily today, some might call it stealing, from Ellen Seidman’s Love That Max blog. Her post Why dads of kids with special needs rock is a winner!  I give it a virtual headbang and two-divided-fingers thrust in the air – last seen by me circa 1989!

Too often, the fathers of special needs kids are not acknowledged for their role. We’ve definitely experienced many meetings, almost all of them actually (true – I’m afraid to say), where every question is addressed to me and I have to turn to my husband and include him myself. Sometimes, he is ignored completely even in his own home.

That’s why I loved her post which includes contributions from lots of special needs fathers where they explain their “awesomeness” as she puts it.

So I put it to my husband. His response? “I sing well to her in the bath. To an audience of one. That’s it, I think.”

WRONG. That’s not it.

Who was the one I saw singing to her in the hospital? The moment that made me realize that we would be okay?

You Gareth.

Who was the one who sat through all those heart-wrenching meetings with me? Who kidnapped me from the hospital to take me for ice cream in the park?

Who spends a Saturday afternoon in daddy/toddler bliss, snuggled on the sofa together? Who shares his ice cream and doesn’t care a bit when it comes back up all over his new shirt?

There are so many moments, I will bore people senseless if I continue.

But, if that isn’t enough – if you need further evidence that May’s daddy is the most awesome of all the awesome dads out there, watch this. In this video, taken this morning, May is doubled over with laughter, not losing her balance while bouncing – in case you couldn’t tell.

(Apologies to all Canadians – it will be clear why in a moment…)

What makes your child’s father AWESOME? Sappy sentimental mush welcome!

Read more from me about Father’s Day and my pregnancy on BabyCenter or via Twitter @MamaLewis1!

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SOB! May has moved into a big girl bed

Sob. Sniffle.

That’s not May crying. That’s her mama.

My little monkey May is officially not a baby. She has shrugged off the confines of her crib and is now stretched luxuriously across a massive, big girl bed.

It was always going to happen. We’ve been waiting for this moment.

Um, actually – when I say waiting, I mean, waiting for IKEA to delivery our new sofa so we could move the futon into May’s room and May into it. The sofa arrived. The futon moved. May moved into it.

Here is why we moved May out of her crib. It wasn’t that she was too big for it. It was because in the middle of the night, she would turn herself sidewise and get wedged in. Every night, sometimes two or three times a night, haul ourselves out of bed to move her back and usually, fingers crossed, she falls back asleep. But, one out of every ten times or so, she doesn’t. And, when that happens, we turn into sleep-deprived zombie parents.

It was Nana’s masterplan, really. The last time we stayed in Wales, she moved May from her crib, into a double bed. May slept like a little angel. That Nana is one smart lady.

We immediately made plans to purchase a sofa and move May into the futon. A futon is actually a pretty good choice if you think about it. When open, it rests very low to the ground and it is certainly wide enough that she will never get wedged anywhere.

Couple that with a genius moment from Mama, when I attached May’s cherished mobile to a chair to hang over her like normal, and what you have is a recipe for sleep.

Sob. She is just such a big girl…

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We visit May’s future (school)

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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This week I’m… learning to be more independent.

FREEDOM!

May is learning to be more independent. How is she doing this? Because I am forcing her to.

Ah, yes. That old favorite of parents everywhere. The final countdown has begun to the arrival of Baby Two AKA Peanut. One month left. When Peanut arrives, little May will have to entertain herself more.

Is she interested in achieving this new found freedom? Not really. But, then, she wasn’t all that interested in sleeping between the hours of 2 and 4 a.m. and we forced her to do that too.

Independence for May, even on a small scale, is a big issue for us. May needs a lot of stimulation and assistance. For that reason, we will still be sending her to nursery (even when I’m on maternity leave, but for May’s sake, it makes sense). But, what of the days when May is home and the baby needs our attention? Or, I’m too exhausted to open my eyes let alone bouncybouncybouncy?

For all these reasons, I’ve been giving May more time on her own. I’ve bought new toys for her to play with. I sit her in her Bumbo or her special chair more, rather than in my arms. I leave her alone in her crib with her mobile playing or one of the other sing-song distractions hanging off it.

Miraculously, it is working! Like while I was typing the above, May was playing in her crib and I when I went in to check on her, I found this:

She’s asleep, by the way, not unconscious (worried grandmothers take a breath!). She goes to bed – naps or at night – awake, without endless cuddles as was the case. Another move towards independence!

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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Will these terrifying stories end with May the victim?

Several sickening stories hit the news today. Everyone of them had me thinking, “What if that was May?” My greatest fears for May all happen in twenty years. If not twenty years, than when my husband and I are long gone.

While May is under our care, she will not be harassed or murdered or abused or denied benefits that are rightfully hers.* Never. It will never happen.

But, without us there?

Let’s remember that the adults who suffered these abuses started off as adorable babies like May. One day, she may depend entirely on others for her care; people who are not her family. We can only hope that their decency and sense of morality will be as high as ours when faced with a beautiful young lady who can not defend herself.

It doesn’t have to be this way. Care home employees could be paid decent wages. Requirements to achieve the posts could be more challenging and therefore the positions more respectable and desirable. I don’t want the people working with May to be unqualified, unable to find work anywhere else. Working with people with learning disabilities is challenging – and also very rewarding – let that be reflected in the caliber of its applicants and their salaries.

There are people who could stop these abuses before they happen. The man who owned the care home that abused its residents. The overseeing body that ignored the complaints from a families and ex-staff. The police. The government.

But, you know what I imagine will happen? The staff who featured in the film, abusing residents, will go to jail for a few years. Inspections will be announced, but uncover nothing. A veneer of purpose will descend over the government – for 48 hours.

Everyone involved, outside of those jailed – the people that oversaw them, the inspectors, the government officials and politicians – will shake their heads in horror. But they will sleep well at night. Their jobs will be safe.

Revolting.

*Every one of these stories appeared today. That’s right. In one news day. And, there were more I could have picked from. Honestly, I feel sick.

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