Archive for October, 2010

It was a year ago, yesterday, that I posted my first birthday progress report. Even then, I knew May was capable of more than originally thought. At the time, I was desperate to focus on what May could do, as opposed to what she couldn’t. I’m proud of myself. I forced myself to celebrate her accomplishments.

So, in keeping with previous birthday updates, I bring you the 18-month progress report! DRUM ROLL!

May when you were born, here is what the doctors definitely knew you would be able to do:

– pee

– breathe

At a year and a half, you can:

– entertain yourself with sounds you make

– bat toys placed in front of you

– press yourself up when lying on your tummy

– attempt to feed yourself and sometimes succeed (and other times just smother your hair in peanut butter which is also fine, though probably not as satisfying)

– blow raspberries

– stand up from a sitting position holding Mama’s index fingers

– kneel against the arm of the sofa and not fall over, without any support

– grow three new teeth

– bite your Mama and Daddy with those teeth

– hold the phone when your Grandma Bar calls for a chat

Caption Contest! Can you guess what May is saying? Click on a photo to enter.


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Joining the long list of things I never thought May would appreciate because of her brain damage, but in fact does: watching a performance and the jokes of silly children’s entertainment.

We “normal” folk appreciate the benefits from entertainment every day. May doesn’t watch television. She doesn’t have a tantrum if her favorite song isn’t played. Sure I have big hopes too – but sometimes it is the small things that “normal” children do, that I want most for May.

The Oily Cart Show made that one small hope a reality this week. I have never seen May so delighted and fascinated before. Their ‘Drum’ show absolutely mesmerised her.

The morning of the show was a bad morning. May’s startle reflex – a baby reflex where they throw out their arms and legs in fear – was in full force. It returned this week after months of hibernation. I couldn’t put her down. Every time I did, she would startle and start to cry. I wondered whether I should take her at all.

Once at the show, it disappeared. Instantaneously.

The show was so musically wonderous, so stimulating, so much fun – that May forgot all her troubles and got happy.

A couple of times during the show, I even thought she got the joke. Like when they used the shadow of a feather on the back of a big drum to simulate a tickle attack on one of the actors. Suddenly, feathers magically appeared and before May knew it, it was under her chin. Hysterical!

The Oily Cart Show gets the Half-Brained Baby ‘GENIUS’ seal of approval.

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Parents interested in the show should read Tim Webb’s comment below detailing all their performances for children – whether special needs or not.

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Lots of heat this week. Our ears are burning from the chatter on the New York Times’ Motherlode blog, where May made her first appearance. My blog about not wanting to be seen as a “hero” was read far more favorably than I expected. In fact, being the NYT, the debate was more pedantic (or philosophical) than anything else.

In what circumstance is “hero’ the appropriate term? How does one define “hero”?

No one seemed bothered by my reluctance to accept it as a term that defines me. I expected to offend far more people. I guess you never know how a piece will be received.

Feel the burn!

May is really feeling the burn this week with a new regime of stretches and positions as directed by her new OT. She has May doing press-ups. I place May, stomach down, over one of my legs and stretch out her arm to the floor, fingers out. I also position her kneeling, using her arms.

The amazing thing is that, after only a couple of weeks, it is already improving her arms. All week May has used her arms to prop herself up. At Small Steps, she barely cried and during my stretching sessions at home she also seemed more comfortable. Not even crocodile tears!

Come on May! Feel the burn!

Another reason for the sudden improvement may also be down to the changes in her seizure medication. She is almost completely weaned off Phenobarbital now. May always had tons of energy, so we didn’t expect to see a boost as it dropped.

But, lately, May is like a baby on speed. An espresso baby. A few weeks ago we noticed changes in her naps – as in, she stopped taking them. Then, the late night parties began. Two hours, in the early hours of the morning. Sometimes she is teething. Fair enough. But, on other nights, she just wants to bounce. Bounce!

So, who is feeling the burn in their arms at 4 AM? Mama and Daddy. Bounce. Bounce. Burn.

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Faithful readers of this blog will remember that May is a budding art critic. For my birthday, today, she offered to take me to the new exhibition in the Tate Modern’s turbine hall.

The Tate Modern rests in a disused power station on the South Bank of the River Thames. The turbine hall is a concrete shell, several stories high. For this year’s exhibit, the artist filled the floor of the hall with millions of crafted, porcelain sunflower seeds. Attendees are encouraged to stroll and sit and disturb the seeds in any way they choose. The point of these exhibits, or the point to plebs like myself, is to involve yourself with the spectacle.

Unfortunately, unlike May, I am not an art connoisseur, nor it seems do I have even the most basic knowledge of seeds or porcelain, since I allowed May to choose what I thought was one sunflower seed, but was actually a piece of conceptual art, to bring home to Daddy. (Apologies to the artist. My husband called me a thief.)

Having established that I can’t even tell the difference between a real and a crafted sunflower seed, it is with great relief that we now turn to May to pass judgment.

May, but is it art?

The exhibit was a slow burner for May. At first, the exhibit left her cold.

Literally. May’s bare feet on all those cold seeds did not thrill her, to say the least.

But, May soon enjoyed the possibilities afforded by a million seeds, all her at disposal. She lay on them. She kicked them. She leaned on them and buried her toes in them.

So, if by “art” you mean, did it move her and make her consider the world in new and fascinating ways, May says, “Yes!”

However, as a point of comparison, May was equally amused by the hand blowers in the toilets.

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Ellen Seidman, an editor at Redbook, wrote a beautiful essay in this month’s magazine about her son and their Halloween tradition. I was stunned to learn that someone took the time to write in chastising her for adjusting Halloween so he could enjoy it, terror-free.

Worse, after it was reported on the Motherlode blog at the New York Times, more people wrote in. Apparently, the anonymity of the web, makes it okay to be a total twat.

Here are just a few of the comments from the site:

I’m sorry but going trick-or-treating when not wearing a costume is just not cool. A major part (if not THE major part) of Halloween is planning and wearing a costume. If you want to do quiet activities at home, feel free. – Desiree, New York

If they came to my door I’d give them candy but I’d be a little annoyed, even if I knew the family and her son’s problems. I’d certainly say “Where’s your costume?” in a friendly way. Costumes are part of what the holiday is about. If he really can’t participate, they should do something else.  – E, from Cyberspace

I think it’s really cheap and lazy for a parent to be so unmotivated as to accept their kid saying, “For Halloween, I just want to be myself.” and get away with being so uncreative as to exempt themselves from dressing up as the major part of the tradition. Then to say, “It’s what my child wanted” as a defense really stinks. – WackyDad, from Virginia

Most of these parents – and they were all parents – ended their vitriol with a whimsical, “My daughter will be the cutest bumblebee on the block this Halloween!” thus proving the ability to dress up a child in adorable costumes is all the expertise one needs to judge the parenting skills of someone else.

Seidman’s writing on her blog ‘Love that Max’ is so full of love and admiration for her son, I am baffled how anyone, especially a mother, could read it and criticize her.

If you, like me, have a child born with severe brain injury – the questions you have will be endless and the answers not in the least forthcoming. Seidman’s post ‘Word to new moms, in honor of Max’s birthday‘ should be required reading for us all. It went a little way to bridge that gap.

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Okay. A slight exaggeration. Not exactly eating with a spoon, more like holding a spoon that already has food in it that May manages to shove in her mouth.

Of course, readers of this blog have been inundated with photos and videos of May attempting to stuff food into her mouth via her fist. “Adorable!” says Mama.

As May progesses further, her hands open up, bat toys, and force my spoon away during meals (anything with hamburger mince receives a severe karate chop in the opposite direction of May’s mouth). For months, we have followed our SALT’s advice and gave May a spoon to hold in her right hand while eating.

This was a communication tool for May to understand food was on its way. Unfortunately, that was all it remained. But, May grips her spoon better these days and less likely to drop it whenever a tasty morsel passes her lips.

Today, I tried out placing a bit of food on the spoon itself. It was the first successful spoon feed we had. May did not turn her wrist in, as she was prone to. She kept her forearm steady and raised it to her mouth, rather than pull away when it hit its target. With a little help from Mama’s steadying hand, she managed to feed herself half her bowl! A great accomplishment!

See for yourself below complete with a couple of very proud exclamations on her part.

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