In which May contemplates art and religion

In this, the next segment of our continuing series ‘Yes May, but is it art?’, we consider a new exhibition that passed before the newly bespectacled eyes of little May this week.

It was not May’s first time at Salisbury Cathedral. She and I enjoyed the cathedral’s tea and scones while I was pregnant and unable to complete the Cathedral tour on a visit only four months ago. I was gutted. (A lie. That scone was love on a plate.)

This weekend, however, May was determined to see more at Salisbury Cathedral and was treated to the Conflux exhibition of Sean Henry sculptures. The exhibition’s life-like sculptures of people juxtaposed ordinary people with the saints adorning the cathedral.

I reached this woman's elbow.

May is a big fan of exhibits that challenge the viewers to consider the value of things. In this exhibition the question was: Should average people be considered equals to the saints they are placed amongst?

The sculptures had a surreal quality that May found easy to ignore, even if her mother found it slightly disconcerting. May can easily brush aside anything she feels is not significant enough to draw her attention. From afar the sculptures looked real, but up close it was a frozen reality and just that bit too large – large enough to make her Mama feel like she was in a scene from Alice in Wonderland. (My husband said I should be used to this since I am already so short, it is a feature of my every day.)

But, who cares what I think?

May, is it art?

On approaching the magnificent cathedral through the square:

Snoring. Bit of wheezing.

After a bottle of milk in the catherdral cafe:

Perking up. Ready to critique some art!

In baby changing room toilets listening to the hand dryer:

It’s art! It’s art! (May loves hand dryers.)

Outside by the sculpture of a woman walking:

Interesting. Possibly art. May listens carefully to see if she makes any funny noises.

Standing inside the open sculpture of the same man lying in bed and standing by a table:

It might be art, but it certainly isn’t interesting. You know what’s interesting, Mama? Dinner. Dinner is interesting.

At that point we retired to the pub where May and her daddy were both reacquainted with their bottles. I waited until then to ask the most pressing of questions: May, does art have a place in religion? Should places like Salisbury Cathedral celebrate modern art?

Slurp. Slurp. Big smile. Straight into bouncing!

Salisbury Cathedral, be proud. May approves.

Side story: My friends, who live in Salisbury and hosted us for the weekend – thank you Anthony and Donna! – saw a dog contemplating this exhibition the previous weekend. The dog could not figure out why the man in the bed looked so much like a man, but neither smelled nor moved like one. So if anyone fancies creeping out their dog, this exhibition is for you.

Want to read more from Stacie? Check out her posts on BabyCenter’s Momformation!

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This week I’m… adding glasses to May’s cuteness arsenal (Photos!)

Last night, in anticipation of the arrival of May’s glasses today, I asked to my husband, “Do you think the glasses will make a difference?”

“No,” he said, bluntly.

I made a kind of hmmm sound. The kind of sound wives make to husbands when a “no” isn’t quite a sufficiently long enough response.

He looked up at me, since I was still looking at him, thought better of it, and continued. “Noooo, but I hope.”

Like him, I can’t expect much more than that.

I picked up the glasses today, less than two weeks after doctors discovered she has an astigmatism. Just as you are, I saw her in them for the first time today. I hope hope hope this makes a difference. So, what do I think of them so far?

Hmmm. Very cute.

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May needs glasses! Woohoo!

I shouldn’t get too excited. The Prof even told me not to get too excited. (Side Note: You know they are medical big wigs when… everyone calls them The Prof or The Boss.)

I took May into Morefields Eye Hospital this week to get her eyes checked. The doctor in charge of the Developmental Vision Clinic at Great Ormond Street recommended attending the clinic. She said they would be sympathetic to May’s developmental problems and not shrug off my attempts to improve her vision with a flippant “there is no point” comment like we’ve received in the past.

The Prof didn’t shrug me off. He was honest. That’s different.

May has an astigmatism. That’s a fairly common eye problem. This means May finds it difficult to see fine details, and things look blurry.

Wouldn’t it be amazing if that was, even partially, the trouble with her vision and glasses could correct it?

I know. I sound too excited. The Prof said it was unlikely that it would make a difference to May due to her brain injury, but in a child suffering solely from the astigmatism, it definitely would. The correction needed is significant. He thought it wouldn’t hurt to give it a try.

So, following the appointment, I chose an adorable pair of spectacles for my May. Said spectacles will make their world debut on this blog in about a week’s time!

Want to read more from Stacie? Check out her posts on BabyCenter’s Momformation!

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Why do so few people care about May’s visual development?

If I can't see it, I'll eat it!

I will remind everyone reading this that I’m not a doctor since I’m about to explain how vision develops in a baby. (Feel free to correct me.)

There are two aspects of vision: mechanical and cognitive. Mechanical is how the eye moves, focuses on things, etc. Cognitive is how the brain reads, identifies and remembers what you see.

The two are very different and yet they work in conjunction with one another. So, when May went to her first eye appointment (lots of fun, you can read here), the mechanics of her eye were fine, but the nerves that grow at the back of the eye and link the eye to the brain were not developing.

Why not? Because the brain received information from May’s eyes, but the parts that could read that information were, shall we say, unavailable. Children are not born with 20/20 vision. The develop their vision for the first five years of life, so if May’s brain can’t read what she sees, her vision as a whole is effected.

To go a step further, even though the mechanics of May’s eyes worked initially, in order to progress they needed her brain to be registering what they were seeing.

Does that make sense?

I condensed over a year of my own research into four short paragraphs so feel free to be confused. For further reading, I would suggest Cortical Visual Impairment by Christine Roman-Lantzy.

Indulge me for a moment.

This was the single most challenging issue to find any information about. It took me over a year just to find it. I asked every doctor I saw. Every single one, even the ones I respect the most, told me there was nothing I could do. Worse, they had no information to pass on to me. That is how little is known about visual development in babies, let alone brain damaged ones. Furthermore, later I discovered that some of the doctors knew about the Great Ormond Street Hospital Developmental Vision Clinic and didn’t suggest it to me. Once I found it, on my own, they were reluctant to refer me to it.

Why is this?

In every physical way, May has therapy. In every cognitive way, May has none.

Why is this?

I must not be the only parent who is desperate for information to help their brain damaged child develop cognitively. I don’t need to say how important vision is to development.

You can click on the Visual Development link in my right side bar to read about some of the things I’ve been doing with May to improve her vision. And, it is improving – just slowly.

Next month, May goes to the famous Moorfields Eye Hospital to have her vision evaluated (mechanically and cognitively) on the suggestion of the head of the Developmental Vision Clinic at Great Ormond Street Hospital. It would have happened earlier except I had a little issue getting there during the past month. That little issue being a new little baby.

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Update on May’s vision

A year ago, I took May to see a ophthamologist at the hospital to check the mechanics of her eyes. We’d already established that May’s vision was weak, but in what way? To what extent? And, what could we do to help?

I struggled to get anyone to help her. I’ve found the medical community is very helpful with May’s physical problems, but anything cognitive or that goes beyond the physicality, they say will just happen as it happens. In these cases, they often say there is nothing to be done.

That kind of attitude is beyond frustrating – it is unprofessional. What they really mean is that there is very little known about brain-damage in babies. That is a very different thing than that there is nothing to be done.

But, they should try! Their guess is better than my total lack of knowledge. I spent many days despairing that no one would help May during the most formative and first year of her life.

May’s appointment with that ophthalmologist was one of the worst I experienced. He acted as if I’d interrupted some genuinely important business, and then basically told me that May was blind and that there was nothing we could do about it.

This week, when I took May in to the Developmental Vision Clinic at Great Ormond Street Hospital (a clinic that took me a year to find), they wanted to refer her back for a follow-up. They saw that I wore glasses and felt we should recheck May’s eyes now that she is older.

I may have physically winced at this suggestion. I hate saying to anyone that I don’t want to do something that might help May. In the end, I swallowed my pride and told them I found the initial appointment traumatic.

Thankfully, they were very understanding. Instead, they are referring her on to Moorfields Eye Hospital where the head of the Developmental Vision Clinic said she will see May personally, along with an ophthalmologist to check the mechanics her eyes.

Their assessment of May lasted over an hour. During this time, May charmed them with her amazing skills in giggling and bouncing.

Their assessment of May was positive. I say, positive, but I suppose what I really should say is realistic. May had made progress, though we agreed that it was slow. Still, they all said that, considering the extent of her injury, it was significant that progress was being made at all.

Unfortunately, they didn’t really have anything new to advise me to do with her. I’m to continue to touch her hand to objects I want her to see, show her familiar objects and say clearly what they are, and look out for what stimulates her visually and present those objects to her in new ways.

Like always, I wish I walked in and they handed me a solution to all May’s visual woes. However, I’ll settle for a thoughtful dialogue and thorough assessment. It is always more welcome than a painful brush off.

You can now follow Mama Lewis on BabyCenter, where I will be writing about my pregnancy, or Twitter!

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This week I’m… sitting in the dark. In the bathroom.

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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Dealing with doctors

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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And May said, “Let there be light…”

There is so much a baby can not tell her parents or doctors. Can she hear? Taste? Can she recognize her mother’s smell or her father’s beard chaffing her face?

In the hospital, we were certain May could see. She seemed to scan the room with interest and focus on objects. In later months, closer observations revealed that May did have a visual impairment. Besides the stiffness running down her shoulders through her hands, her inability to see became one of the most significant of her disabilities.

May seemed to fix, but could not follow. She didn’t, still doesn’t, recognize my face when I peer over her bed in the morning. She reacted to lights switched on or off, but not objects.

To a casual observer, she appeared curious about her surroundings, her eyes searching rooms and sticking to points of interest. But, we knew better.

For months, I’ve been waiting for a referral to a paediatric opthamologist. I’m still waiting. It was approved, but no appointment letter arrived. That, and a lack of relevant information by so-called experts, namely the government, has meant I’m basically on my own.

Being the expert, when your serious lack of knowledge means your child may not gain the capacity for sight, is a lot of pressure. For months, I sat in dark rooms or the back of the car with May during long journeys, with glowing plastic worms, hand mirrors, sticks with balls that light up on the end, anything really that would attract my daughter’s very weak vision.

Then, yesterday in a sensory room, I saw May see. I watched her reflection in a mirror while she sat in someone else’s lap. She gazed up, transfixed, on a tube filled with water and flowing with colored lights and bubbles. I watched her eyes as they tracked the bubbles up the tube. I watched when the color changed and she thrilled at the next one.

The tube makes no sound so I know it was the colour, the lights and the tiny bubbles she was watching. Her therapists witnessed the event with the same awe I did; though they didn’t cry, like I did.

My daughter May can see.

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This week I’m… using colored lights.

Be patient. This is all leading somewhere (a phrase that should be the official motto of this blog)

Living in Britain means my life has changed immeasurably. While it is often hard to put a finger on the exact differences, the English language itself provides some clues. For example, Americans are often thought of as more artificial than the rest of the world, but it is the British that show their true saccharine nature through their deviations in English. In the land of the Oxford English Dictionary, they have created cutsie terms such as a bickie (for biscuit) to be dipped into their tea while watching the telly (television).

As a high school teacher of English, I devoted many years to learning and applying the “British” forms of English. But, in this blog, read on both sides of the Atlantic, I have steadfastly stuck to American English. I probably slip up, in fact, I’m sure I do – anyone would who has immersed themselves in another country for over ten years – but, I try my best to stay consistent.

And that, my friends, is why I have written “colored” instead of “coloured” in the subject heading of this entry.

Finally, the point, the real point, of this entry – May has a visual disability. She isn’t blind. She can differentiate between light and dark, fix on objects (like our eyes) and moves her head and eyes towards sounds, even behind her – which shows some spacial awareness.

But, she doesn’t follow objects with her eyes. She is never excited by visual toys, even those that flash so violently I have flashbacks to the terrible nightclubs of my youth.

The fact that her first visual therapist was dismissed two months ago we first met May’s new therapist yesterday, doesn’t help. Nor does it help that, due to technical difficulties, her visual brain scan had to be redone on Monday so we have yet to know the results or receive the referral to a specialist. Nor does the hefty pack the government gave me help, one which medical professionals of all kind keep pressing on me as being so helpful. It isn’t.

Because of all this, I have become May’s visual therapist – along with everything else – I buy black and white toys, string Christmas lights up in May’s room and use pens with colored lights in the tips to exercise May’s eyes.

Will it help? Who knows. Like with most neurological problems, I am not an expert, but I’m not satisfied to wait and see if May’s visual problems fix themselves.

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This week I’m… reading to May.

I try to read a book to May every day. A baby book, of course. Don’t get too excited – I’m not starting her on War and Peace.

The books are wonderful because they have the bright colors she needs exposure to for her sight, they sound wonderful to listen to, feel wonderful to touch – with all kinds of materials padding them out – and, best of all, she listens to them while cuddling with me. Always a treat for both of us.

What other “therapy” offers her all that?

Here’s a few she loves:

Jungle Chatter – I can’t find it on-line, but here is something similar. I put May’s hand on the soft, animal faces in the hopes she thinks she is pressing down when they make their animal sounds. She loves the monkey sound! Who knew monkey cries were so funny!

Big Rex and Friends – a favorite chosen specifically for May by her cousin and dino-fan Connor. Very bright, with lots of different materials May enjoys touching and the cover makes a cool, crinkly sound.

By the way, whenever possible, I try to recommend books off The Book Depository. As good as Amazon and FREE delivery.

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