Searching for a nursery – Part I

Last week, Mom and I visited the first of several nurseries on the short-list for May. The long-list was over a hundred of nurseries all within Lambeth and driving distance from us. We have to stay in Lambeth so the council will fund anything May needs – from extra equipment to a one-on-one teacher for her.

Lambeth requested we choose a nursery rated “outstanding” by the government. Out of the hundred-plus near us, a whopping two were rated “outstanding”. Of these, one has a 200+ waiting list and one has a 70+ one. Each have space for 12 babies.

But, Lambeth told us that, due to May’s special needs, she may be able to jump to the front, or near the front.

Which brings me to the story relayed to me around the Thanksgiving table two nights ago. My friend went looking at primary schools (elementary for the Americans) for her son with a friend who had a child with Down’s Syndrome. She waited outside the Headteacher’s office of an “outstanding” primary, while her friend sat with her daughter inside explaining her child’s needs.

“She is non-verbal,” the mother said, “but she can understand everything being said to her.”

The Headteacher shook his head and pressed his lips into a frown. “I don’t think we will be able to accommodate her. We don’t really like to admit children like her with such needs.”

The school, he continued, found it too difficult to offer the time, attention and care that a child like her would require. He didn’t, however, find it difficult to point this out in front of her daughter, who, while not capable of speech, understood every word he said and started to cry.

Thankfully, my mother and I already visited one “good” rated nursery last week that welcomed May with open arms and had experience of working with other children with cerebral palsy. We are waiting to hear if Lambeth will accept that nursery.

This week I will also check out the “outstanding” nurseries to see for myself if their outstanding care stretches as far as children like May, or if they can only be outstanding if they escape working with challenging children.

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Photo of painted crib!

It’s not all doom and gloom in our household.

Isn’t this wonderful? My mom is awesome.

And, I love the motto. Love. Bounce. Laugh. Words May lives by!

May's friends

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Thanksgiving and beyond…

This week, with my mother in town, has been brilliant. She bought May a beautiful crib (cot – for the British folk) and while I type this, is painting a cartoon elephant, monkey and horse on it in bright, primary colors. All match a mobile she bought May earlier in the year, which remains one of the few toys May is genuinely interested in.

Having Mom visit makes me feel less alone and and less totally responsible for every single one of May’s needs. That is a huge relief for me. Not too surprising then that today I’m feeling slightly bereft already at the thought of dropping her at the airport tomorrow.

Everyone says that there is support “out there” – that nebulous “out there” meaning therapists and the like. They are there, but they have other patients, other appointments, other concerns – even their own lives to deal with! Can you believe that?

As reasonable as all that may be – and sometimes it feels reasonable and sometimes not – it still means a week here, two or three weeks there, that go by without May being seen or my questions being answered. Which has all left me feeling the weight of May’s difficulties falling on my shoulders.

So, here’s what I worry about:

Visually, May seems to track slightly better, but the marked difference in how well she hears compared to sees, is very worrying. Also, May is pulling her left arm up towards her chest. She can still stretch it out, but the action itself, coupled with her pretty limited attempts to reach, worry me. Finally, May loves to bounce, but is landing wrong – on her toes and curving her foot so her ankle drops outwards.

Which of these can I fix? Which of these do I need to just accept and not try to fix?

The worst for me: worrying that any of the above will result in less stimulation in general for May and, subsequently, less cognitive ability later on.

That’s one mighty weight.

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Happy Turkey Day!

Nothing makes me feel better, especially this year, than being with my family. Nothing makes me feel more like the world is open to May, rather than closed; that she will be included, loved and adored as much as I include, love and adore her, as when we are with my family.

I’m taking advantage of my year-long maternity leave to share May with my family. We are thrilled this week because my mother is in town, currently asleep on the sofa. Besides the exhausting gift of non-stop bouncing, May also gave her grandma her cold.

Mom came in for Thanksgiving. Tomorrow, we are cooking up a feast for a few friends. For any American readers, the reason we are cooking our feast on Friday instead of Thursday is because we are in Britain. For some reason, it is not a British holiday.

In honor of Thanksgiving, I would like to give thanks:

To my family… for being a constant support (and I include my husband’s side in this).

To May… for being such a joy and insisting I enjoy life with her.

To The Boss… for investigating every angle to ensure May has best care and for having the occasional dig at me for being American (joking with patients/mothers very rare in my experience with medical professionals).

To his PA… whose relentless nature has meant that people deliver results and appointments are made (and because she puts up with endless phone calls from yours truly).

To all of May’s therapists and assistants… who give us their time, as well as, quality, professional information, advice and amazing equipment that in the States would cost us a bomb.

To my friends… people always say the worst situations show who are your friends and who aren’t. Turns out, all my friends are true ones.

And, of course, to my man Gareth. The best. The absolute best man in the world.

Happy Turkey Day everyone!

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Small Steps School for Parents (update – Part II)

From my previous post about the Small Steps School for Parents, I received several comments about my reaction to May not being given a place, that made me feel I should clarify that post.

Firstly, I love Small Steps School. The fact that May isn’t starting there right now is only devastating to me because I know how rare and wonderful a place it is.

Secondly, in my post I explained how discouraged I was that May wasn’t offered a place. The email they sent was vague about what the next step for May would be. Their next step included offering us another session late in January, but for me that felt like a long time away. (That isn’t to say I feel they should offer an alternative. I know there are only so many hours in a day, days in a week…)

Being a parent to a severely brain-damaged child can be a very lonely place. Not knowing when or if May would receive a permanent place, coupled with the loss in more immediate terms of what I know is such a wonderful atmosphere to immerse both myself and May in, was very hard for me.

I think it is okay for me to be disappointed. I’m disappointed, not angry. It is possible to be disappointed about an outcome and still respect the people who deliver it.

Which brings me on to my third point… I spoke to Small Steps today. They made it very clear that May will have a place at the school in the near future. They do not turn away children, as some readers feel I implied. I always knew, as I stated in the original post that there would be reasons, good ones, behind their decision about when to start May. The original email made me feel that May’s future at Small Steps was nebulous, but now I am certain it isn’t. I appreciate Small Steps clarifying this.

Finally, I apologize if my post came across as disparaging towards a group of professionals that I know work very hard, offering an incredible service with limited resources.

The real shame of this situation is that it highlights how few schools there are like Small Steps in relation to how many families are desperate to be a part of them.

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Parents I hate

Two days ago, I sat in a lovely cafe with a friend. We chatted over a shared plate of chips and salads. The meal was difficult enough for me since she had her baby the same week I did, and as the months tick by I see more obviously the developmental differences between the two girls. She is such a nice person and all she said were wonderful, encouraging things about my May; that, plus a plate of chips, made for a wonderful afternoon.

Then, the inevitable. The worst part about eating in lovely cafe in the middle of the day. The other mothers.

A Frenchwoman with her gorgeous blue-eyed child approached us. Her girl was about one-year old and tottered about the cafe holding on to her mother’s fingers. The girl was drawn to May’s buggy, where May lay sleeping. She peered over the edge of the buggy, pointed at May and squealed with delight.

“Sorry,” the woman said.

“It’s not a problem,” I said. I moved the buggy a bit so that her girl could see May better.

Then, the questions began. How old? What is your baby like? What does she do? In my head, I thanked May for being asleep so I didn’t have to watch this woman calculate silently what May should be doing now, but can’t.

“One-year? And, your baby is toddling all over the place,” my friend said with a complimentary smile to the Frenchwoman.

The woman rolled her eyes with the weariness only the mother of an over-achieving baby can muster. “Oh, it is terrible,” she said, “I never get a moment’s rest. She is always up and always walking. She never leaves me alone. It is awful. I’m always exhausted. I hate it.”

And, I hate parents like this. How can you take for granted the wondrous things your child does?

If May is able to walk and wants to do it all day long, it would be the greatest gift she could give me. If she is able, may I always be exhausted and always love it.

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This week I’m… (swimming update)

Tonight in the bath, as soon as May lay back in her bath seat she let out a tentative kick of the water. She paused with a look of total (baby) concentration and then let out a thrilled chuckle; paused again, another kick, more chuckling.

I love these moments where I can almost see May connect up separate ideas. Pool… water… kicking. Bath… also water… kicking!

 

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Small Steps School for Parents (update)

Small Steps contacted me to say that they don’t have a place for May. They didn’t explain why or if a place might open up. They did invite us to another one-off session late in January. Does this mean we are still being considered?  They did say “please rest assured that we are thinking of her.”

I’m not sure what “thinking” means. Is this a vague British-ism meaning “still considering her for a place”, or a vague British-ism for “we thought she was a very sweet child”?

I’m now in the strange situation that they may actually read my blog and see this, as they saw my original posting about them. So, if I can just add, I hope they don’t mind me quoting that tiny bit of a larger and very friendly email.

I could have asked them all the above personally rather than write it here. But, this post isn’t a plea for them to respond. Besides, they must have thought either 1) May wasn’t needy enough, 2) other children were more needy, or 3) there were not spaces available in the level class May requires.

Until I received the email, I don’t think I realized how much I’d pinned my hopes on a place. Sometimes May’s care, regardless of the professionalism of the experts, seems so haphazard. I see someone one week and then not again for three or four weeks. I do everything they ask, but do I do it effectively, long enough, frequently enough, in the correct alignment?

I never know. I can’t know. How can I keep track of everything? It is a lot of pressure to feel that I am by far the greatest influence over whether my daughter maximizes her potential.

Once a week, to surround myself with other mothers like myself, in that kind of instructive setting, would have done me as much good as May.

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A waste of good trees

May received her first sight therapy session last week. Her eyes move in a coordinated fashion, she reacts to light and seems to focus, but there are all kinds of other skills involved in sight and May does not seem to have them all. My husband and I are concerned that she can not follow with her eyes. Maybe she has no depth perception. Or, maybe she is not identifying what she sees. We really do not know what the issue is.

The session was evaluative. May basically played with some toys that lit up. At the end of the session, I asked the therapist for some activities for May. She was kind enough to personally deliver materials to us later in the week.

This comprised a massive, activities journal and recommendations for sight-impaired children produced by the government called ‘Early Support: Helping every child succeed.’ When I say massive, I’m going to estimate the first volume to be about 100 pages, double-sided.

That may sound incredibly supportive to the average person, but for a parent traversing the exercises of several therapists’ advice every week, 100 double-sided pages is not nearly specific enough to support my daughter.

If I manage, between physio, OT, play therapy, swimming, brain scans and prescription hunting to read through this volume, here are some recommended suggestions to improve May’s sight:

“Talk to your baby while cuddling them… your voice and physical contact is reassuring.”

“Do things which get your baby to smile or chuckle.”

“Let your baby finger familiar objects that they come into contact with.”

I have spoken to May’s sight therapist today and asked her to please prepare some activities for next week  that are more specific to May’s needs. She is a very pleasant woman and did not seem surprised at my response to the materials. She said that these were government guidelines and that “most parents found them frustrating.”

I am trying to give her the benefit of the doubt, but I already feel my frustration brewing into something more like anger. What does she, or the government, think of parents such as myself if we are given materials that recommend we cuddle our babies? I am also concerned about her assessment of May’s sight, since the activities cover a multitude of skills she already, very obviously has, such as smiling.

It’s just not good enough.

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This week I’m… swimming.

This story is a bit naughty. Last week, we had a lovely swim in the pool at my gym. I had never swam with May before and decided on a whim to try it out. But, I didn’t have any swimmer diapers.

Being the inventive genius I am, I wrapped her diaper in a plastic bag (legs inserted through holes I created) and then wrapped another diaper over that and another plastic bag. May looked like she had elephantiasis of the tush.

I thought, “There is no way they are going to let her in the pool like this.”

On the way in, an attendant ran up behind us. “Here it comes,” I thought, putting on my most innocent of expressions.

“Miss! Miss!” she cried, “Please, let me help you carry your car seat into the pool.”

This took me so by surprise I had to glance down before I remembered the car seat gripped in my hand. Car seats don’t fit in gym lockers. “Oh! Thank you!” I said.

She took the car seat and placed it next to the pool.

A second later, another attendant. “Miss! Miss!”

“Yes?” I said, turning around with anticipation.

“You left your blanket behind in the locker room.”

I smiled, “Thank you so much.”

This was followed by a dip in the pool with May: beaming smiles, lots of kicking and splashing and even some yummy, chlorinated water drunk.

She LOVED it.

Removing her from the pool was not so easy. She weighed about a half-a-ton. You may know what this genius inventor did not: diapers are absorbent. They had collected about half the water in the pool.

I’m taking her again tomorrow, this time with swimmers. The water supports her body and gives her a wonderful freedom of movement. And, she LOVES it.

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