Tag Archives: nursery

It Takes Two

It’s been a bit intense here for the past week or so, so I’m thrilled that Small Steps Amazing Achievements has come along to knock some sense into me and remind me how good things can be.

One of the loveliest things about Boo is how friendly and sociable he is. These things get commented on frequently, especially by healthcare professionals. They read about Boo’s catalogue of medical problems before meeting him and assume certain things about him: that he won’t be able to engage with the world around him; that he won’t be sociable; that he won’t vocalise or have words; that he will be angry and frustrated. None of these things is true. He smiled from 2 weeks of age (corrected), has always had good eye contact and loves people, who he interacts with though noises, facial expressions and mimicry.

I don’t take any of this for granted. We are incredibly lucky that he does all of these things, that his brain damage doesn’t seem to have affected his sociability.

But for all his love of being around lots of people, Boo necessarily spends a lot of time one-to-one with a solitary grown-up. It’s how he learns. In order to maximise his physical potential, he has a least 1 1/2 hours a day with one adult doing physio, or attempting to self-feed, or practising fine motor skills (a real challenge for him). This is one of the many reasons that when we were deciding on childcare for Boo when I went back to work we came to the conclusion that we wanted him to go to nursery. He needed and deserved to be around kids his age, we thought. He gets precious little of this normality in his life.

But of course, the minute you put Boo with other kids his age or (in fact, as things are in his nursery) younger kids, his difference sticks out like a sore thumb. He can’t crawl with them or chase them if they run off with his toy. He even has to have his own box of toys, mostly plastic, easy to hold, flashy noisy toys that he gets good sensory feedback from, in a nursery where all other toys are, as a matter of policy, natural (wood, metal and cloth). The other kids covet his contraband toys. They love the gaudy, flashy, lighty toys they can’t have. And they are mesmerized by his glasses too. They long to play catch with them…

Some days, on not so good days, I worry that putting Boo in a group with lots of healthy, neurotypical kids, just teaches him he’s not like them. But then I started to notice some small changes that make me feel we made the right decision.

Boo has started to play with the other kids.

It started when I went to pick him up one day and Boo was tapping on a saucepan with a xylophone stick. Aww, I thought. The awws turned to ahas, however, when I noticed he wasn’t just doing this on his own and randomly. He was copying a little boy (the youngest sibling of one of Sissyboo’s friends) who was beating the living daylights out of a wok on the other side of the room. N smashed his wok. Boo responded by tapping his saucepan. They were both giggling as each took their turn. If I didn’t know better I would say they were developing their own brand of baby morse code, like prisoners of war in solitary confinement. ‘Let’s escape the nursery… Let’s persuade Hermoine to be sick so the girls run to help her and we’ll shimmy out the window.’

And then the other day The Grumposaur went to collect Boo and he saw him passing a toy to another boy who passed it back again and so on. Letting go of things is very hard for Boo. Getting them is such an achievement, and then his brisk reflexes kick in and releasing his grip is hard. We have been working on it, periodically (along with the 1001 other things we are supposed to work on every day) and he is getting better. But to do this passing game with another child is a huge step forwards.

You see the basis of most interpersonal relationships for Boo is like this. Someone puts him in a particular position and expects his to do something. Grab something, move in a particular way, make a particular sound. And then he does it or tries to do it and then he gets inane smiling from accompanying adult, lots of praise and a round of applause. Seriously, he looks for applause after he does most things. (Life is going to be such a disappointment for Boo…) And of course kids don’t clap and aren’t easily impressed. They snatch, they cry or pull faces most of the times. These are far less enticing and rewarding interactions for Boo. But he loves other kids, just as he loves grown-ups. He wants to interact with them too, even if they aren’t going to give him a standing ovation for playing with a pop-up toy.

It’s not like he’s taken up chess or anything, but these small glimpses into a world of play with other kids his own age are priceless. And I hope there are many more to come.

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Good News Friday #15 and The Play Agenda

What a week! Sissyboo finished her first year at school on Wednesday and the summer hols are upon us, which means, as I explained last week, that this is the first of six weeks that I’ll be combining Good News Friday with some thoughts on The Play Agenda run by the lovely Leoarna at Not Different But Interesting. To learn more about this fab new linky, click here.

But first, an update on Boo. Well he hasn’t been doing all that well in the heat. Everything is a great effort for him add unusually high temperatures to the cruelty of his day-to-day challenges and things are harder. They’re harder still when you’re teething (9 and 10 through, 11 and 12 following). And to cap it all his development has slowed right down. If I could think of an adjective that means slower than glacial, I’d use that, but I can’t and you’ll get my drift (no pun intended).

This would be hard enough to take were it not for the fact that Boo lost his 2 hours of nursery one-to-one on the days he’s there in early July. This two hours bought dedicated support to do one physio session to complement what I go at home each day, time for feeding him and settling him to sleep. It was working quite well, but he needed more time and we found out there was another pot of money for children with acute medical needs we could apply for that would buy just that if we were successfully awarded it. But instead of applying to the old fund to tide him over until the deadline for applications to the other grant scheme, the nursery, well, didn’t. So he went without. I found out just a couple of days before this happened and was devastated.

I have been utterly miserable for weeks and my working mum guilt (acute at the best of times despite my determination to work if I can to support us financially and preserve my precarious sanity) has reached unhealthy new heights. I worked shorter days than ever to do as much therapy with him as I could and have worked until gone midnight nearly 7 days a week to make up the time. Not good. I am on my knees.

Anyway, the meeting to decide Boo’s fate was on Monday. So drum roll…

After spending most of Tuesday in tears, as Twitter friends will know, waiting on the decision, I was told he has 3 hours one-to-one until November when we will reapply to the same fund in light of his physical needs then. It is such a huge relief. As always, we’ll take it one step at a time. Our lovely physio is going in on Monday to nursery with me to update his programme for them and we will see how it goes. If nursery  doesn’t work for Boo longer term or I feel his development is suffering, I will pull him out. But if we can get him into mainstream education, surrounded by neurotypical kids of the same age, it’s got to be good for him.

 

Mr Boo's first piece of nursery artwork

For now, though, I’m just thinking about the next few weeks. And Monday’s decision is not just good news, it’s fabulous news! And to top it off The Grumposaur and I got to celebrate in style by using the meal for two with wine I won at a local pub-cum-Thai restaurant in the school raffle. It was lovely, despite both being knackered by 21.30, to spend time together on our second night out in 17 nearly months.

Now on to The Play Agenda. I started the summer hols in style by taking a day off work on Thursday when Boo was in nursery to take Sissyboo to Legoland as a special Mummy and daughter best big sister, end of school year great. I really didn’t know how it was going to go. I’d never been before and the talk of the crowds, queues and expense made me nervous. And then the M3 and M4 had accidents on them. It looked like it was going to be a disaster. It wasn’t.

We had the Best. Day. Ever. We paid using Tesco vouchers, which got us in considerably cheaper than paying on the day or even online in advance and which also enabled us to head straight past the queues when we arrived. I’d taken a towel for the wet rides (we got soaked on the first Viking ride at the start of the day – whose dumb idea was it to wear canvas shoes?) and a swimming costume for Sissyboo for the heaving but cooling splash park in the newish Duplo World. I could have been really organised and taken a picnic but as there was just us and no one to hold bags as we were thrown about on the rides I thought I’d treat us to a meal at one of the all you can eat restaurants, which was very good.

The queues were moderate (between 10 and 30 mins). Some rides had longer lines but we just didn’t go on them. And fortunately Sissyboo really likes Lego (oddly, I think some kids there didn’t), so we spent a lot of time looking at the exhibits (the Star Wars one fascinated both of us), making things and watching stunt and puppet shows and a 4-D Lego short film, which, apart from he super scary dragon rollercoaster that Sissyboo laughed hysterically throughout, put the biggest smile on her face.

We were gone from 8.15 until 7.15, despite only having gone on about half the rides, and came back completely exhausted and happy. I firmly believe that you don’t need to spend a fortune to entertain your kids but this was a one-off. It was my way of saying thank you to Sissyboo for bearing  with so much this year and looking after her brother so well. It’s a day neither of us will forget in a hurry. And I have lots of photos to prove it.

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Today the Boos and I had a much more low-key day. We went to the library and got Boo his first library card. Big day! Sissyboo, meanwhile, joined the summer reading Creepy House challenge. She has to read and rate 6 library books of her choice over the holidays and gets various little prizes (stickers, keyrings and a medal as she progresses). She is so excited about starting the first book tonight.

Then I finally found the one remaining paddling pool in Surrey after ours punctured irreparably  last week and the Boos splashed about and played in the sandpit in the garden for hours. Our garden is tiny and we live very near a huge park, which is fabulous, if ridiculously busy, in this weather. One of my goals for the summer is to make sure we use our garden more. It’s small but it’s hardly as though the Boos are forming a football team. And Boo loved doing his physio outside. A change of scene makes such a difference when you are trying to work on two-handed holding in sitting for the 8th month in a row. Boo looked like he was on day release from prison. I felt similarly.

It’s been an exhausting week. It started off pretty rough but has got better and better. I’m fit to drop and glad the weekend is around the corner. This will include Boo’s hydro, Sissyboo’s long overdue haircut, some holiday preparation, work (boo hiss, I’m still so behind) and me cheering on some amazing Bliss fundraisers in the London Triathlon on Sunday.

I hope your week has been fun. Please do share any good news you’ve had in the comments box below. The Boos and I love to hear from you.