Monthly Archives: September 2013

The Chaos of SEN Childcare

I am Mrboosmum and I am a working parent. I feel like I have to write that in the style of a group therapy confession. Not that I feel I need to talk that way to other parents of kids with special educational needs. To be honest, most conversations I have with mums who have kids with disabilities or additional needs go like this:

Them: So you work then?

Me [on the defensive, thinking they will judge me]: Yes, but my employer is understanding and I am fortunate enough to work flexibly to minimise the effects on Boo. I take him to all his appointments.

Them: Oh, I’m not judging you. You have to do what’s right for your family. I’d give anything to be able to work some of the time.

or

Them: Oh I’m not judging you. I tried to but couldn’t make it work with childcare.

No: the folks I do have to defend myself before as a working parent are Early Years providers. Because as the regional Special Needs Co-ordinator for my area (someone whose son has some developmental delays of his own) put it to me a few months ago, ‘The trouble is, the LEA doesn’t recognise that children have any educational needs at all until they’re 3. That’s why provision is so patchy and why you’re gonna have a real battle on your hands.’

You see, I’m not supposed to work now I’ve had Boo.

But I do.

I do, partly because I have to. We would lose our home and probably have to move out of area if I didn’t work. (Not big deals perhaps, but to be frank, I can barely contemplate changing our brand of margarine given all the change we, and especially my daughter, have had to live through in the last 18 months.)

I also work because I have a career that is unusual in that there is no going back. If you leave, you’re out. It’s a career that you embark on young (ideally) and stay in until you die. This is scarcely an exaggeration. I would be giving up an awful lot (years of debt, education and training) if I walked out of my job now.

And I want to work. It makes my life harder, in many ways, but my own mental health (fragile at times since having Boo) benefits greatly from having something else to absorb my attention. I like my job. A lot. Moreover, I’m fortunate enough that my profession is quite flexible. A good part of it is rigidly timetabled and structured, but much can be done remotely and flexibly. I work almost every night when the kids have gone to bed and at weekends too. It’s not everyone’s cup of tea. And it isn’t easy. But it feels right for us.

Battling to get appropriate childcare for Boo so that I can work has been challenging. My plan was always to send him to the private nursery his sister went to from the age of 6 months. It served her well and the nursery supported us all so well when Boo was born so unexpectedly, so early last year.

He is there now, but getting the support that he needs (and that the nursery staff need to support him in meeting those needs) hasn’t been entirely straightforward. Initially, we put in for an inclusion grant from the local council for him. Lots of meetings and letters later, we were lucky enough to get enough money to pay for a support worker at the nursery to come in so one of the regular members of staff could spend 2 hours each day he’s there 1-1 with him. This is essential given that Boo can’t move unaided, can’t feed himself or get at things without help. They were trained up in his daily physio and incorporated that into that 2 hours.

But 2 hours wasn’t quite enough and we had to apply every 8 weeks for the funding, which from everyone’s point of view was a major hassle. As if CP and epilepsy are like having a broken leg. (In 8 weeks it might have disappeared, don’t you know. We wish. We wish…)

Then we learned of a fund for children with acute medical needs. Boo fitted the bill for that. More forms, meetings and letters. And eventually he got that and was awarded 3 hours of 1-1 a day. But because this scheme and the other we’d tapped into had different deadlines, and because applications to both schemes couldn’t be held simultaneously, he lost his 1-1 for 3 weeks.

In those 3 weeks, I nearly lost my mind, keeping him in nursery as little as possible, working through the night to keep him with me, looked after, with his physio done. (Never mind that we have to pay for his nursery place for 51 weeks of the year (despite taking holidays), and that we pay a day rate that runs from 7-7 even though the longest he is ever in there is 08:30 to 16:30 and many days he has to be taken out for hours for appointments. A lot of money is made out of Boo at the nursery that isn’t being spent on him.)

Anyway, we were extremely grateful to have gotten the money. But even with the acute medical needs fund we have to reapply every 16 weeks. Because obviously, he’ll start doing an Argentine Tango in November. We have no security. No reassurance long-term. I know we’re OK for the next two months. After that? Who knows.

But I am not complaining. Really. I love the nursery; Boo is looked after well and we work together with the staff as a team. It helps that we have a longstanding relationship with them. And I know things could be worse. So much worse. Like a friend of mine who has been quoted a 2-year wait to get any 1-1 for her son at nursery. Let me just type that again in case you missed it. She has been told  (she is in Hackney) that she will have to wait two years, two years away from a career that would no doubt be closed off to her forever if she left, despite the fact that she is bloody good indeed at it.

Parents of kids with additional needs often need to work. They need to keep a roof over their family’s head. They need to pay the bills. And they need money to buy the many, many, many bits of equipment our kids need to function to their potential. Equipment that gets at least two zeros put on the end of what you think it might cost because it’s for kids with additional needs and the model is that it will be paid for by your PCT or LEA. It rarely is in my experience. We have had no specialist equipment given to us for Boo so far (he is nearly 18 months old). We haven’t even seen an OT yet despite him being classed as an urgent (i.e. at risk of scoliosis and ruining his parents’ backs) case, and we have been on other waiting list for therapies/equipment for 8 months now.

Oh and then there are those parents who not only need to work, but actually want to. For whom work is a vocation, a lifeline, or let’s be honest here: a form of respite.

From September 2014, the new pre-school LEA nursery funding in the UK is being extended to children in receipt of DLA. This will make nursery a little cheaper for parents of children with special educational needs. But won’t help at all with getting the 1-1 our kids need and, dare I say it, deserve. This won’t cover the additional costs nurseries incur when they needs to employ extra staff to work 1-1 with our children.

This troubles me. Greatly. The inconsistencies trouble me. The lip service paid to inclusion bothers me. So along with the fabulous Mama Lewis and Tough Little Cookies, I am trying to draw a picture of the inclusiveness or otherwise of pre-school education when it comes to children with additional needs. Many of you have already and kindly responded to tweets I’ve written on the subject, but we’re keen to get as broad and as accurate a picture as possible. So if this post speaks to your situation, I’d be grateful if you would leave a comment below or drop me an email.

Thank you.

Advertisements

Decluttering: Hard on the Heart but Good for the Soul

I read a lovely post the other week by the fabulous Learner Mother. It was about September and her new year urges to get her life sorted and ultra organised. I recognised these feelings. It’s partly a symptom of working in Higher Ed. I always operate according to two years at any one time: the calendar year and the academic year. And for me the academic year has always felt more New Yearsy (that is absolutely a word, before you go running to the dictionary…) than New Year itself. It’s something to do with the weather being better and not feeling weighted down by all those mince pies, I think. In September I want to plan, file, spring clean, declutter and otherwise sort my life out.

This year is no exception. But I admit, I’ve hit a brick wall.

Decluttering. It’s not something I usually have a problem with. I don’t think of myself as being a hoarder (we don’t have the space at home for me to be for a start) or a procrastinator, but I have become expert at both recently.

You see, I kept everything after Sissyboo was born for the second child I hoped we’d have one day. When the 20-week scan revealed most of her clothes wouldn’t be suitable for number 2, I piled them up (keeping only a few things with sentimental value) and sold them at a nearly new sale. (Over a year later I finally got round to spending the money I made then on a family ticket to the Harry Potter Experience next month.)

But I kept all her toys. Not being a fan of the insidious way toys can be gendered I even kept what we fondly know as the Princess mobile, a mini-tractor type thing she was bought by a relative at 12 months, covered in Disney princess stickers and bright pink for him to play on. And then there was all the equipment. The car seats, the baths, the travel system and buggy and so on.

We’ve put lots of it to good use. And I love seeing Boo play with his sister’s rattles and books and shape sorters. But it has been frankly heartbreaking to see how much he can’t use and may never be able to use.

The Bumbo never provided him with enough support. After weeks of trying him in it for a few minutes a day I knew his low trunk tone was not something he was going to quickly grow out of. The infant reclining plastic bath seat started to produce what I now understand to be some sensory issues (he startled every time we put him in it) and now he’s too big to fit in it anyway, but can’t use the upright swivel bath seat Sissyboo moved onto next because it relies on kids being able to sit independently.

Same goes for her cute highchair, the buggy that hopefully soon will be replaced by an adapted buggy with wheelchair services. Oh and the car seats, that don’t support him adequately, and which we have now replaced at great cost with a fabulous Scandinavian contraption that I defy Houdini to find a way out of. I don’t think he’s destined to scoot off with Snow White on the Princess mobile any time soon either.

But I still have all this stuff. And it is useless to us and to Boo. I need to get rid of it. But I haven’t been able to yet, despite it taking up so much room in our house. It’s partly because life is manically busy most of the time, but I know there’s a deeper reason.

You see, I know that in getting rid of all this stuff I am saying goodbye forever to the childhood I had imagined for my son. The conventional upbringing, the normalcy I wanted for him. And it breaks my heart. For him. For us.

But something happened over the past week. I don’t know whether it’s September and my New Yearsy (I told you, it IS a word) feelings, a shift in mental gear or what, but I have started to take pictures of all this equipment to sell on Ebay.

Because I realised that this stuff is just that: stuff. Yes, I have happy memories of Sissyboo using it, but keeping it for Boo is only causing unhappiness by reminding me what he can’t do. I write so often on this blog about how all I want is for people to accept Boo for the beautiful person he is, and in keeping hold of all this stuff I realise am being hypocritical. I need to accept that we need to support Boo (literally and figuratively) as best we can and clinging on to things that might make him seem normal if only he could use them is failing to do that.

Now I’ve come to that realisation, I feel happier. And I think I’ll feel happier still when the stuff is out of the house. He doesn’t need it. We don’t need it.

So out with the old and in with the new. I’m not saying goodbye to one kind of life (actually, we said our farewells a very long time ago now), I’m saying hello and welcome to the life we have. And it is a good one. A really good one.

Good News Friday #21

Where did that week go? September is back and time has sped up. Again. It’s quite alarming. But it’s been a really good week and not as difficult to see the wood for the trees as it sometimes is. So here’s the woody good news from Boo Land this week.

 
1) Back to school. Now don’t get me wrong. I miss having Sissyboo around. I have enjoyed the summer holidays, despite having to work through much of it. But she was ready to go back. She wanted to go back. Despite being a parent who has never imposed a particular routine (except around meal times and bed time) on my kids, they both want and need them. Sissyboo was ready for bells telling her the time and certain activities at certain times of the day. She was really excited about being a big girl in year 1 (where did the time go?). 
 
Me? Well I didn’t bother to think if I was emotionally ready for the new year because I was too bloomin busy reading the 1000 emails from school about which days were PE days, when show and tell was, how to select an appropriate toy for this term’s learning project, learning targets … Oh and the labels. The bloody labels that I carefully unpicked from last year’s uniform and sewed into this. I got there eventually and we were ready. But I did get slightly misty eyed on Wednesday when I dropped her off. Her? Not so much as a backwards glance. That must be good news. She’s happy.
 
2) Boo has been assessed for the various bits he needs to fit his Breezi chair and even just with all the tightening and finessing the lovely rep, Les, did, Boo is able to sit well in it, even feeding himself sweetcorn rings. Once the chest straps in there’ll be be no stopping him! 
 
3) Conductive Education is a goer. We feel so lucky to have been offered a place for Boo at a Conductive Education centre of excellence for 3 hours a week. We visited the centre on Thursday and were really impressed by the friendliness and commitment of all the people we met and the facility itself, which is fabulous. While we talked to the head of early years, a teacher played with Boo doing the kind of learning through play activities we will be working on in the sessions. He had a ball and giggled incessantly for an hour and a half! We start in a couple of weeks. And I’m very excited!
 
4) And finally, and I know I’ve blogged about it already but I don’t very often get to do milestone boasts, so do forgive me, Boo can now roll from front to back. It’s so thrilling to see him do it, although he is now more frustrated than ever that he can’t roll back to front. Some day, Boo, some day!
 
Right: now your turn. I hope you have some good news this week, too. Do let us know via the comments box below. We LOVE to hear from you!

 

Catching up with the Play Agenda

play-agenda

So Sissyboo went back to school yesterday and into Year 1. (Year 1? How did that happen?) Is it wrong of me to say I had mixed feelings about it? I miss her, but she was ready to go back and the juggling of working, childcare and so forth was getting tougher as the days went on. Still, I admit to a barely audible sniff when she walked into class yesterday with her new teacher with a spring in her step and not so much as a backwards glance at her frantically waving Mum. Where did the time go?

Well, not on writing Play Agenda posts for the lovely Leoarna at Not Different But Interesting, that’s for sure! I had great intentions of writing weekly updates on the activities we did but after about the first couple of weeks failed miserably. On holiday in Devon, we played so much there wasn’t time to blog about it, and I wasn’t always feeling playful, to be honest, as tensions rode high in Booland.

Trying to blog about everything we did would take too long, which has to be a good thing, right? There are some trips I’d definitely like to tell you about, like our day at Forde Abbey.

IMG_3607[1]

Or the Pecorama. Or the Fleet Air Arm Museum (where there was a Doctor Who spectacular on).

Or the lovely Bank Holiday we spent just last week at Hever Castle, to which I’d won a family ticket at Sissyboo’s school summer raffle. But mostly, I’d like to write about the days when we didn’t do that much or pay that much. When we just sat on pebbly beaches or mooched about Lyme Regis or lucked out on free entry to a museum, or crabbing or fossil hunting. I will. Eventually.

IMG_3677[1]

For now, I thought I’d take stock. It’s the time of year to take stock don’t you think? And see how near (or far) I got to my aims for the holidays.

Well, we certainly made the first part of goal number 1: To have one big day out (to a splash park, country house etc.) each week. We’ve been to gardens, on steam trains, to museums, all sorts, and usually had a fabulous time (taking the packed and sweaty steam train for 90 minutes each way to Minehead to see a Red Arrow display that didn’t happen was not one of those). The second part of goal one – ‘engaging both kids (5 1/2 year old and 1 year old with additional needs)’ – was much harder to achieve. Beaches and Boo, we found are not always happy bedfellows, whereas Sissyboo stripped all her clothes of and ran to the merest sight of a drop of water. Gardens, we found, were best.

IMG_3781[1]

Boo loves being outdoors and the colours, scents, sights and sensations of places like Forde Abbey or Hever really held both of their interest.

 

image

Well…most of the time.

Trying to do something with Sissyboo each week was not as easy as it sounds, but I did it. On holiday we even managed an hour long horse-riding lesson together, which was fabulous. She was a natural. Me? Well, I enjoyed, it but no 2020 entry into the dressage for me. Most weeks, we just tried to shoehorn in some craft or baking with Boo getting cross in the background. I am so glad our Homestart visits have started again. Our lovely volunteer enables me to spend 2 hours a week with Sissyboo. We’ve both really missed this.

3, 4 and 5 were doddles. Boo’s therapy was harder to fit in on holiday, admittedly, but I am good at turning most things into a therapy opportunity, even meetings with friends (so important to me) and playing in the garden.

Goal 6 is a complete failure. The Oliver Twist Victorian puppet show I have been doing with Sissyboo on and off for 7 months still languishes on the top of the bookcase. But we will finish it soon. But we did lots of other crafts (goal 8), admittedly not as many with Boo as I’d have liked. Oh and the bike riding momentum was lost and the maths practice, well, I just couldn’t make her do it when I could see she didn’t want to. She’s 5. She’s bright. She’ll get into it when she has to. I have a feeling that’s now…

I certainly kept the blogging going over the summer and people still seem to be reading it (thank you!) and I took lots of photos. I hope you like the ones on here.

Most importantly, though, I achieved the main goal of the summer for me, which was not to sweat it. I am so good at setting myself impossible challenges. But I knew that I couldn’t use this holiday to compensate for those previously where Sissyboo has had to visit me and Boo in hospital or see things no 5-year old should see: her brother in a plastic box with a tube down his throat. Her brother nearly dying (both at Easter last year). Her brother having seizures (Christmas). I was much better at going with the flow this time around and it felt good.

So it’s been a busy summer of work and play, and a good one. I’m really grateful to Leoarna for giving me a reason to really think about our play agenda and the particular challenges it throws up for our family. I haven’t resolved them, but I am starting to see ways round them. And we’re all happier as a result, I think.

IMG_3613[1]

 

 

 

Rollin’, Rollin’ Rollin’

I’m going to give the credit to Jane. It must be down to Jane. Small Steps Amazing Achievements is a lovely linky.

If you haven’t visited it or participated in it yet, you have missed a treat. It’s a place to go and celebrate the amazing things our kids do. These things can be big (first words or steps) or more modest, those small things that make up the big pictures that are our children. It’s not a SEN linky, although Jane’s beautiful boy Ethan has additional needs. But you can see why it especially appeals to parents like me, though, I’m sure. Size is definitely relative in SSAA. The little things can mean a great deal (the first rule of Premmie Club). And I get a real kick sharing these each Wednesday.

But sometimes Boo doesn’t get with the programme of Jane’s schedule. Sometimes I scrape around to find progress where, if I’m honest, I can’t see any. (There always is, as this linky makes me see, but sometimes it gets obscured in the fog of familiarity and frustration.)

This week is one of those weeks. No: it was one of those weeks. I got to Tuesday lunchtime and thought, hmm, no SSAA post for me this week. I was totally exhausted as Boo’s sleep problems get even worse (I would blog about it, if I could keep my eyes open for ten minutes) and couldn’t see any light at the end of the tunnel we’d entered. Next week. I’ll write something for the linky next week, I thought.

And then I went to pick up Boo from a morning at nursery. One of the girls in the room (his former keyworker until he changed rooms recently) said: ‘I’m sorry, I’m going to make you cry’. Oh God, his one-to-one has gone, I thought. His Cushi Tush is broken. They can’t do his physio any more…

‘He rolled today. From this front to his back. Deliberately. He wouldn’t stop. He found it hilarious!’

I didn’t cry. I couldn’t believe it. Then his current keyworker ran in and said ‘Has she told you? We couldn’t believe it. I called everyone from Toddler Room 1 too. We were all watching him. It was amazing!’

I saw her beaming smile and I believed it. Tears welled up and Boo’s carers cried too.

At 17 months (actual not corrected) a baby rolling from tummy to back (not even a 360 degree roll) shouldn’t be news. But it is and the girls at nursery got it. It means so much to me that they got it. I want to shout it from the rooftops. My son can roll. 180 degrees only. But still. He can half roll.

After 12 months of daily practice in physio at home – 12 months, people – Boo has finally enough control over his head and the spasticity in his arms and legs to move from his front to back. And he was suitably pleased with himself to put it mildly. He wants to roll. He is determined to move himself. And now he and we can see a glimpse of hope that he might. I have not stopped smiling all afternoon and Sissyboo has declared this ‘the best day of her life’. (I’ve told you she’s a smasher!)

Thanks,  Jane. He must have known about the linky and been worried about what Mummy could write. Either that or 12 months of physio is working.

Keep the ball rolling, Boo. We’re behind you all the way!

a4641-smallsteps

So Tired, Tired of Waiting

Image

Waiting. It’s become a favourite preoccupation of mine since having Boo.

We spend so much of our lives waiting. It started in the NICU. When Boo was born we had to wait and see if he could breathe independently. He did, but then he got meningitis. Then we had to wait to see if he’d survive. He did. But then there were the brain bleeds and the damage. No one could predict how they would affect him. We’d just have to wait and time would tell, the consultants told us.

And we are still playing that waiting game. Waiting to see if he’ll roll, sit, walk, talk, have learning difficulties, be able to go to mainstream school. And part of that game involves going to lots of appointments and sitting in waiting rooms. Sometimes for hours. How can a clinic be running 2 hours late when your appointment is 15 minutes after it starts? It also involves being on massive waiting lists, hoping we can access the folks we really need to see (OT, wheelchair services) before other problems set in because we’ve had to wait too long for the equipment that would help him.

And there’s also the big wait hanging over us. The wait for the postman every day, hoping he’s going to bring the letter telling us the results of the diagnostic tests Boo had over 2 months ago. The results we hope will confirm he has CP, as we expect, rather than some horrid genetic or chromosomal disorder or something life-threatening. Please, please let them come soon. Please let it be what we expect.

I’m not great at waiting. It’s not that I’m impatient, exactly. Well I mean I am and I’m not. I get very frustrated with myself when I don’t get things done or can’t get my head around something. But I’m also determined/bloody-minded enough to keep going until I’ve got a grasp of things. When I was young, I had to take a year out of school for health reasons. My appointed home tutor couldn’t speak German, the language I needed to start that year. So when I went back to school, still unwell, I had to learn 2 years of German in one, with no support from the school (or my parents, who don’t have any other languages) to pass my GCSE. I did and it was so hard I decided to continue on to A-level. Why waste all that work, I thought.

My approach to my GCSE colours my approach to our life now and the waiting game we have to play. Like I’ve said before, I’m not going to take each day as it comes; we’ll wrestle as much as we can with our situation to make out of it the best for Boo. We don’t just wait for milestones to be met ( or not). We do physio every day. I’ve sought advice on seating and carseats and sorted that myself because in my mind and his physio’s Boo can’t wait any longer for OT intervention.

I push against the tide at every opportunity. It’s hard work, to put it mildly. And sometimes I feel like I can’t push back any more. I start to crack. I sob. Then I give myself a pep talk and start all over again.

But for all my kicking back, for all the frustration and exhaustion, I do recognise a certain beauty of life in slow motion. Not the waiting for appointments or battle for intervention (I love the NHS but the waste and inequities in the system – a post for another day – make me weep, regularly). No: I mean the watching and waiting for Boo.

The other day I was talking to one of my students about Boo and she (a mother of four, grandmother of two and a PhD completing marvel) said ‘I don’t know how you cope. You are amazing.’ (I am not, by the way. I am not.) I acknowledged things were hard, but almost surprised myself by telling her how beautiful they were too. ‘But you must be so worried waiting to see what will happen,’ she said. Well, of course, I am. But it is also fascinating and amazing watching Boo grow.

‘It’s like those nature documentaries,’ I said to her. ‘You know, the ones where a flower is filmed growing from a barely perceptible seedling into a tall, fragile and proud orchid in about 30 seconds against the backdrop of a rapidly changing sky. Sissyboo, though I didn’t realise it at the time, was like the sped-up orchid, moving quickly and without hitch from skill to skill. Boo? Well he’s more like the orchid in real time. And while I want to speed the film up sometimes and see the orchid in full bloom, to know its particular shape and shading, his progress is no less beautiful. If anything it is more stunning to observe the slow unfolding of his becoming the boy and young man he will be.’

I’ll never be good at waiting, Boo. But I am patient enough to be tenacious, to help you all I can. But don’t think as I try to help push you on (‘Come on, where’s that trunk control, straighten up… Just 5 minutes more physio, Boo) that I don’t appreciate your progress.

I can’t wait to find out who’ll you’ll be. But I adore you just as you are, too.