Archive for May, 2011

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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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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May has conquered the Everest of the baby seat world THE BUMBO.

For those unfamiliar with The Bumbo Seat, it is one that babies can sit upright in as soon as they can support their own neck. The seat is made of a kind of firm foam that cushions and supports. The seat secures the baby’s legs, hips and lower back, leaving the upper back, arms and head free.

What the Bumbo manufacturers didn’t realize was that their design was actually a vehicle for kicking your legs and bouncing forwards and backwards (the point of the seat is that it won’t topple).

It took a long time for May to feel comfortable using the Bumbo. Archie’s grandma, Jill, our friends from Small Steps, encouraged me to drag it out from the depths of our closet and put May in it for just a few minutes once a day. At first, a few minutes was even difficult. But, over the course of a couple of months, and with the strength in posture her Supergirl Suit brings, May learned to love it.

Here’s the other thing I love about it… this is one more step towards independence. There is very little May can do on her own, and this is one.

Our resident Supremo Cute-o demonstrates below.

It can be hard to find toys for special needs kiddies. If you are interested, I posted about other toys May loves on BabyCenter this week. 

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I’ve let my May down. There… I’ve said it.

In some ways I’ve let motherhood as an institution down. That’s right. I’m not afraid to call a spade a spade (I think I’m the spade in this analogy). What mother would wait over two weeks before posting birthday photos of her daughter. What mother would wait to share the glory of her adorable daughter on this, the most important day of the year, of her life?

Phew! Now that I’ve gotten all that out of the way… BRING ON THE PHOTOS! I dare you to even imply that May is not the cutest two-year old in the world. (If you do, I ask that you bravely include your address and prepare your home for my arrival, suitcases jammed with albums of May.)

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

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