Flexibility: You Can only Bend so Far

Flexibility has become my watchword in the last two years. When you’re life is chaotic and unpredictable, there’s no other way to be really. We have to roll with things (like the fact Boo still can’t roll, for example). We have to adapt when things go wrong and equipment breaks, or when things get ordered and then funding gets pulled at the last minute. (Yes: this just happened. Again.)

And because I am attempting to keep my job and home through all this, I have to work flexibly. It’s the only way our lives can work. I work at home in the day as much as possible and work at home 5 nights a week to make up for time spent in appointments or doing therapy with Boo. I am very lucky that my employer lets me do this. Very lucky, indeed.

But being flexible also means bending to other people’s wills more than you would like. Because I can be flexible people expect me to be, which means not living up to other people’s expectations is a constant problem. My diary is always supposed to give way to someone else’s even when doing that will make our lives much harder. Being flexible doesn’t mean my days are any longer than anyone else’s.

But the biggest problem with all this flexibility is the blurring of the lines between my roles as mum, carer and employee to the extent that in my head I am all things at once all the time. Even when it’s not convenient in the least.

Like yesterday. For the first time in 6 months, I had no appointments for Boo on a Monday. He had a nursery day and I was going to get loads done. Loads, I tell you. And I did, for the first hour of the working day, anyway.

Then the post arrived. It contained a paediatrician’s appointment notification (which we can’t make, because it clashes with another Boo appointment). Then there was the letter confirming the LA’s decision to proceed to assess Boo for a statement of educational needs. This was great news, but, as I explained yesterday, the timing has presented all sorts of logistical complications, which necessitated two phone calls and 6 emails, not to mention facing up to the lengthy document we (by which I mean I) need to write. Then Boo’s trike quotation came through (yay!) and I phoned up lots of charities, all of whom said they couldn’t fund us for various and totally understandable reasons.

What I should have done was put the post aside and not opened it until I scoffed down lunch. But I couldn’t. The LA logo on the envelope would have taunted me until I did. And in my experience, the sooner you rearrange medical appointments you can’t make the better. This one is already 3 months overdue because the clinic is so oversubscribed.

After all the post-post admin I set down to work. And all I could do was cry. Cry about what a mess our life can be. About how stupid I was to manage to let statementing coincide with the school hols. How much I want Boo to have a trike and how I wished my savings pot was bigger. How much I wish we didn’t have so many appointments. How rubbish a Mum I was for thinking that.

I gave myself a talking to and tried to get my head back into the day job, knowing that every minute lost would be added to my working evening and I was so tired already. And then the phone rang. It was the OT ringing to tell me something I already knew and to confirm that she had forgotten to do something she had said she would do a month ago. Enough!

Flexibility is the only way I can live my life. And let me say again, I know I am lucky I can live like this. But when your home is not just where you live, but your son’s therapy suite (my feet are resting on his physio roll as I type this) and your office, it does present certain problems.

I wish I could get my head straight. I wish I could be flexible enough that I could bend without periodically breaking.

Making a Statement: Part II

On Saturday a letter arrived in the post with our LA logo on it. We weren’t expecting anything from Social Services or Early Years, so it had to be the decision of the panel which met last week to consider whether to proceed to statutory assessment for a statement of special educational needs for Boo.

I opened the letter with a good deal of trepidation. As I said in my last post, several people who work for our LA in different roles said categorically that they could not see the LA considering him for a statement on the basis of his age, and that we should expect to be turned down.

But the LA didn’t turn him down. They only bloody agreed to assess him. Can you hear the corks popping?

But why did they agree, I wonder? I’d like to think it was because his need is so obvious and the LA’s duty of care is so clear. I suppose the vain part of me would like to think that, in part, it was because I really did my homework. I phoned Contact a Family’s statementing helpline. I talked to various parents I know who have been down this route already in different LAs. I read Tania Tirraora’s incredibly helpful book Special Education Needs: Getting Started with Statements. I collated 11 recent reports from healthcare professionals and politely badgered those we hadn’t got one from until we did and sent copies of 12 months of IEPs.

Maybe it was these things. Maybe, the cynic in me thinks, it was that I mentioned that I would go to Tribunal if he was turned down. Maybe it was that I mentioned my involvement in the Parliamentary Inquiry into Disabled Childcare. I don’t know.

And I won’t ever know of course.

And I don’t know what will happen next.

I am really pleased we have got to this point without contentious conversations with the LA or legal proceedings having to start. But I have to admit that the timing  of all this (and it’s my fault) is shockingly bad.

There are very clear, statutory deadlines for each part of the statementing process, just as there will be for its replacement EHCP, which comes in in September. We received the LA’s decision two days ago. Before the end of August, the assessment process needs to be completed. At that point they will decide whether to issue a statement or not.

And we are going away for 2 weeks of this 6-week period. Boo’s special school, which he attends one morning a week, finishes for the summer holidays on Wednesday and won’t return until after the deadline has passed. His physio is away for 3 weeks, one of his consultants (the one who has to coordinate all the medical reports) is away right now, so can’t coordinate anything, and his SALT therapist only works term time.

I think we might be screwed. I feel I have let Boo down.

I phoned Boo’s case worker this morning to talk about these difficulties. Obviously, the LA can only go on the basis of evidence collated, so we will just have to hope as many people as possible respond by completing appendix B in the time frame permitted, and that where they can’t do that, that the reports we have already collated and submitted give the necessary info. I emailed everyone who might be contacted yesterday evening to warn them, in any case.

So there is a moral in this tale. Timing is everything with these things. Even with EHCP, which promises to be a much quicker process, deadlines will still apply. Trying to coordinate all stages of this lengthy process to avoid Christmas, Easter and especially the school summer hols is not easy, but it’s clearly advisable if possible.

So please cross your fingers that we can get over the calendar hurdle to the next stage, which will be the LA agreeing, we hope, to issue a statement and not (please, not) a note in lieu which sets out the kinds of provision he might need but binds no one to provide it. Oh and let’s hope I don’t have to cut short or return in the middle our holiday to Cornwall this summer for an Ed Psych assessment. Boy, do we all need a holiday.

I promise to keep you posted. And would love to hear about your experiences of statementing, assessment and how the holidays may have had an impact on experiences of these processes.

A Note to NICU me

mrboosmum:

This is a post I really need to re-read once in a while. If only I could have told myself these things in those difficult days.

Originally posted on Premmeditations :

Boo is teething. It’s awful. He is dribbling through about a vest an hour and waking himself up many times in the night choking on the copious amounts of saliva he’s producing. He’s biting everything in sight (including me), has a fever (I know lots of people say that’s not a teething sign and it never was with Sissyboo, but he has had a temperature of 39 degrees every time one of his 9 teeth has come through so far) and he won’t eat (most unlike him). One tooth popped through this morning; the gum above it looks fit to burst. So hopefully we’re now on the home straight for this bout.

 
It’s made for a pretty difficult couple of days, especially today as I had the kids on my own while The Grumposaur was away. As I sit here hoping Boo’s settling down for the night, I feel…

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Making a Statement

Tomorrow is a big day. Tomorrow a panel convenes in part to decide whether or not to proceed to Statutory Assessment for Boo. This is the day when they decide whether they will consider him for a statement of special educational needs.

You would think it would be simple, wouldn’t you? Our son has quadriplegic cerebral plasy and is on maintenance medication for epilepsy. He has global developmental delay. He cannot sit unaided for more than a minute or two in a very particular position he can’t get himself into. He cannot roll or crawl. He has some words, but very few. He is bright and keen to learn but his access to the EYFS curriculum is compromised because he has severe physical disabilities. This is a curriculum to which he is supposed to have access thanks to the funding for disabled children of two years plus to go to nursery (although we are not in receipt of it yet and it won’t fund the full 15 hours in the private nursery we found to take him.)

So again, you’d think it would be very straightforward, wouldn’t you? He has acute, demonstrable need in three of the four areas outlined in the SEN Code of Practice. Surely that means he’s a shoe-in for a statement.

And maybe it will be straightforward. Maybe.

But so far, four people who work for our LA (two in Early Years, one as a Portage teacher and one as an Ed Psych, the Ed Psych who would assess him if they proceeded to assessment, it turns out) have said they can’t see the LA agreeing to assess a child as young as Boo. We have been told it is not how our LA ‘likes to do things’. We need to wait another year. At least.

But we have exercised our right to request an assessment anyway fully expecting the LA to exercise their right to refuse us. For a long time, I persuaded myself to wait until the new EHCP system comes in in September.

But at a seminar on SEN reform, solicitors advised me not to wait. Boo’s needs were acute. IEPs were not addressing his needs and enabling him to access the curriculum along with his peers. And the statementing system was a known entity and still very much in place. Why wouldn’t we apply?

And then Boo’s 1:1 (about which I recently gave evidence at the Houses of Parliament) started to seem ever more insecure. The 15 hours of 1-2-1 support he has just managed to receive isn’t guaranteed (in fact it is about to run out again) and personnel changes and managerial inflexibility meant he lost his fabulous 1-2-1 support worker, was given to someone who didn’t want to work with him and didn’t know what to do with him. Because we have no statement we can’t enforce the provision his therapists expect him to receive at nursery and which the LA thinks it’s paying for in the form of discretionary funding.

It’s simple. Boo needs the security and accountability a statement can provide. And maybe we will get one.

But we have received a catalogue of misinformation from LA staff all designed to put us off applying. We have been told that we can’t apply for a statement at his age. We have been told our LA won’t issue any more statements because of EHCP coming in. I could go on with the worthless tit bits sent our way. (Thank God for the Special Needs Jungle website, which has been my sanity saver with its clear advice and trusted information since we embarked on this process.)

I don’t think our experience is unique. Applying for a statement or EHCP is a process mired in difficulty and obscurity. The proposed EHCP system is supposed to streamline things and make them more transparent. I hope it will, but we won’t know for a while.

So for now, I have decided to share our statementing/EHCP journey with you all on the blog so you can follow us through the process. Our experience is not indicative or representative. It’s just one family’s experience. But I hope sharing it may help others as they embark on their own.

In a week or so when we expect to hear about the decision of tomorrow’s panel, I’ll update you. You’ll either hear how assessment is progressing or how we are gearing up for Tribunal.

A Day In the Night Garden

ITNG

 

Sissyboo at the same age Boo is now had quite an extensive viewing repertoire. She was a big fan of the usual suspects: Show Me, Show Me, Peppa Pig, Thomas and His Friends, Ben and Holly. She had also started to like films. Her favourite was, and still is, The Wizard of Oz. I don’t want to give the impression she watched the gogglebox all day, but Sissyboo, despite my best efforts, dropped her afternoon nap at 19 months even though she needed ‘quiet time’ (as I did) to regroup. And that was how we spent some quite time. Watching a Show Me, Show Me and colouring or watching a film.

Boo, as in all things, is different. He doesn’t believe in quiet time. He’s either on the go like the Duracell bunny or completely conked out. He still very much needs his nap. And until a few months ago he looked at the TV as if it were the most pointless invention ever.

Now, this is no bad problem to have, of course. But it had me a bit worried. Sissyboo likes TV and film because she likes narrative. She loves good stories well told. And she has always had a fantastic attention span. She can read for ages or colour or make things for hours, just as she will watch all three hours plus of a Harry Potter film without a peep.

So did Boo’s lack of interest in the TV mean he couldn’t concentrate in the same way. Or were his vision problems more complex than we thought? I decided not to worry about it. There’s too much important stuff to worry about.

And then one day I had a panic. I hadn’t done my therapy homework. I had said to Boo’s Speech and Language therapist that I would try to learn some Makaton. I was sceptical about it (Boo can barely use his hands, so signing for him seems unlikely and my sense of his understanding was that he didn’t need gestures to comprehend what we were saying to him). But I do my homework ,so I made the promise and then realised I had done nothing about it.

Then bingo! Justin would teach me, I thought in a eureka moment. I put on Something Special  in the background while doing some stretches with Boo. And guess what? I learned the Makaton for lemur (which I’m sure I will need one day). And he was transfixed. He loved it. Still does. And we all love seeing a programme where kids like Boo are the norm rather than utterly invisible.

Shortly afterwards he added another programme to his list of viewing pleasures. It had been one of Sissyboo’s once upon a time, too: In the Night Garden. The words Iggle Piggle and Upsy Daisy bring instant smiles to his face and determined looks at the TV, as if he could turn it on and start an episode playing by sheer force of will.

And so, buoyed by his new found love of Derek Jacobi’s voice, I decided to take a plunge. He’d only just started watching short TV programmes, but I figured he was ready. I booked tickets to see In the Night Garden Live! at the Richmond snow dome. A performance coincided with an inset day for Sissyboo. The three of us would journey to the Night Garden together. And what an adventure it would be.

Sissyboo has loved the theatre from the age of 2. One of my favourite stories is of her telling me and her dad emphatically not to clap at the end of the first show she ever saw, The Gruffalo, because that would mean it would end and she wanted it to go on forever. This time, she was the grown up, telling her little brother how to behave in the theatre.

Except of course, behaviour was the least of our concerns. As the parent of a disabled child, logistics were one of my top worries. You can book premium tickets with wheelchair access online, but nerves got the better of me when I tried to do this, so I phoned the ticket line to make sure that they would have a wheelchair space for Boo (who would need to sit in his adapted buggy throughout) and two for his sister and me next to him. They did and the booking went very smoothly. We also booed to meet Iggle Piggle himself afterwards, where I hoped the sight of a 6 foot blue cuddly thing with a coxcomb would seem less scary than it sounded.

We got to the snow dome in good time and when they saw Boo’s buggy we were ushered into the premium seating queue where an usher said she would take us to our seats in a few minutes. I wish I could show you a picture of Boo’s face as he travelled round the edge of the snow dome to the sounds of the Pinky Ponk and the Pontipines and the reassuring snippets from Derek Jacobi. He looked happy, if a little confused. We got him positioned and Sissyboo sat next to him. He was right at the front, off to the side and had a great view as you can see from my photo (yep: I’m no David Bailey).

Everyone else piled in as Derek Jacobi gently told Upsy Daisy and Makka Pakka to get a move on as the show was about to start. Boo was still happy. But still confused. Why were we sitting inside a bouncy castle that didn’t bounce?

And then the Ninky Nonk came out and all became clear. I would tell you what happened in the show (as a seasoned In the Night Garden viewer I can tell you it probably involved losing things, finding things, cuddles, funny noises and lots of falling over). But I can’t tell you exactly. All I could watch was Boo’s face.

From the beginning to end he squealed ‘yeah’ and ‘more’. He loved it. He just loved it, watching in wrapt attention as all his Night Garden friends came to sing, dance and squeak for him.

And then we met Iggle Piggle. I don’t know how, but Iggle Piggle managed to get on his knees to be on a level with Boo and Boo stroked him and smiled the biggest smile you have ever seen. They had a cuddle and a photo with his big sister which I am looking at right now.

Going to a first show with a child is always special. But going to a show with a child like Boo is extra special in so many ways. This is not the sort of event we can just phone up to get tickets and go. It takes enormous planning. Is there appropriate seating? Are there adequate changing facilities and parking? I’m so pleased that In the Night Garden Live took all those headaches away from me. All we had to do was make a call to book tickets, tip up and enjoy a truly inclusive event.

And we did. We really, really did.

 

Taming the Green-Eyed Monster

mrboosmum:

I’ve been trying to keep her at bay, but the Green-Eyed Monster, the subject of today’s #ThrowBackThursday post never quite goes away.

Originally posted on Premmeditations :

Image

Ok, you probably won’t like me much when you’ve read this post. I’m not desperately fond of myself at the moment, either. But the deal I made with myself was that this blog would be me warts and all. Otherwise, what’s the point?

So here goes. Me in all my most resplendent unattractiveness. I have been wallowing in self-pity for much of the day. Boo seems to have plateaued developmentally. His low trunk tone is stopping him getting much further and no matter what or how much I do, I can’t seem to fix this. I am desperate for him to sit. For the hope that him sitting would bring me. The hope that some gross motor milestones might actually be his for the taking. But I’m also a bit desperate for my back, too, if I’m honest. It’s not coping fabulously at the moment.

I hoped when I told…

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Seeing is Believing

Sometimes people say the daftest things. Sometimes it makes me mad. Like when people ask me what’s wrong with Boo or was he born like that (‘like that’?!), or make fun of disabled people in front of me. (All three of these things were said to me in the space of a three minute conversation just this weekend and it took every fibre of my being not to get cross.)

As time passes, though, I’ve learned to be a bit more discriminating. I’ve learned not to let everything get to me. I’ve learned not to rise to every opportunity to fight Boo’s corner. There are too many battles to fight and my energies are best spent helping him where he needs it most. And I know that some people aren’t malicious; they are just ill-informed.

But it still hurts. That they see something in Boo or in our lives that we just don’t recognise.

The soundtrack of inane or inappropriate comments when we’re out and about is sometimes deafening. Sometimes it’s hard to hear anything else. And then at other times, just when you least expect it, someone says something so unexpectedly and wonderfully incisive that you realise your lives aren’t invisible to other people. That they can see what we can.

Yesterday morning I had to make a regular trip to the chemist to pick up Boo’s seizure meds and his inhalers (a legacy of contracting RSV in hospital 18 months ago whilst hospitalised for his epilepsy). It’s a small, local chemist, with two pharmacists who share the working week between them and a shop assistant.

They have seen us from the early days, post-NICU discharge when he was on domperidone, ranitidine and dalavit (the premmie cocktail of choice). As his dosages reduced they congratulated us and then they sympathised through awkward facial expressions when they increased again and were accompanied by high-dose steroids. They knew something was very wrong with Boo. When he was put on Epilim along with the steroids, they knew it was worse still and I had to tell them he had infantile spasms. They looked frightened for us.

From then on, I tried to make my visits to the chemist’s as in and out as possible. It wasn’t that they said anything that made me feel uncomfortable. It was just that they looked at Boo and me with an expression of profound pity. Compassionate pity. Kind pity. But pity, nonetheless.

Pity… You know, in many ways I find that harder to deal with pity than even the most stupid or offensive comments.

But yesterday when I went in I was too distracted by the excitable banter between Sissyboo and her little brother to notice the pharmacist’s facial expressions. Boo was squealing and yelling ‘more’ to encourage his sister’s mad antics and crazy conversation.

The pharmacist asked if Sissyboo was Boo’s sister. It had never occurred to me that I had never taken her with me to get his meds before, but I guess I hadn’t. I explained she was. And he just looked at them for about 30 seconds before saying to me: ‘That is a very special bond they have. You know what, they will both feel happy and loved all their lives with a bond like that between them.’

It’s something we think about a lot: What will happen to Boo when we die? It’s not that we’re morbid. You just think about this stuff when you have kids, don’t you, and I reckon you think about it about 100 times a day more when one or more of your children has additional needs. Sissyboo shouldn’t have to look after Boo if he needs that level of care when he’s grown up and we can’t, but it makes us both feel a whole lot better knowing how much they adore each other. That hopefully, he can rely on her. Things can change a lot, of course, in the span of childhood. Their relationship will change. We know that. But we just can’t see it souring. They are each other’s best friends and advocates. It is a bond like I have never seen between two siblings before, even with my own sister, with whom I am very close.

And for a few moments yesterday, what we see was clearly visible to someone else. Someone who looked at Boo and didn’t see a disabled child, but a much-loved and extremely loving happy child and sibling.

And it felt good.