Monthly Archives: July 2014

Upsee fun

It’s been 10 months since Boo got his standing frame. We were told that by the age of 2 he needed to be in it for up to 2 hours a day to promote bone density and good hip placement. He now attends a hip placement clinic, and although his hip alignment isn’t perfect, it’s very good considering the nature of his cerebral palsy. They don’t want to see him again for a year. Phew.

Now, ssshhh, some of Boo’s therapists might be listening. We don’t often manage two hours of daily standing frame time. Two hours of restrained standing is hardly an inviting prospect, even to a largely immobile 2-year-old, but we manage about 45 minute to 1.5 hours daily.

And we’re lucky. Boo loves seeing the world upright. In fact, he has from the start, as this post (featuring a much smaller, but still smiley Boo shows). The trick has been to find things to entertain when he is braced into the frame. Boo’s Leckey stander fortunately has a bowl under the table (the top of which is just velcroed on – oh how we rely on velcro in this SEN life) and we try to fill it with lots of interesting things. Shaving foam is good (but better at nursery, as far as I’m concerned) as is water or, perennial favourite: dried pasta.

Witness our dining room 3 hours ago…

 

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Walkers are potentially much more fun, though. Movement and standing? 2 for the price of 1! But Boo’s walker is an ancient one from the hospital that doesn’t work properly. We are being loaned it until a new one can be bought (just got panel approval, but it has taken ages, and for the past few months, we have had to grapple with a broken gait trainer and wheels that won’t stay locked. In other words, it’s useless.

And then something fabulous arrived in our lives. The Upsee!

You’ll know all about the Upsee. Even people who know diddly squat about disability couldn’t help being totally captivated by the amazing pictures in the papers or Youtube videos of kids who can’t walk unaided, stand or even sit without support walking on the beach or down the aisle.

We tried an Upsee at Kidz South a little over a month ago and both of us loved it. Just loved it. Initial set up takes a while (you have to get it right) but gosh, it’s worth it and never as much trouble again.

Boo loved it from the minute he got in it. He was upright and he could move without holding on to anything or having to contend with wonky wheels and NHS austerity. We stood and we walked. After a minute or so, I could even feel Boo lifting his right leg himself to initiate stepping. I was not going to be wholly in charge of this thing. That was clear.

And that’s what it’s all about, isn’t it? As Boo gets older, I am becoming painfully aware of how easily life can become something that happens to him rather than being initiated by him. He has appointments (lots of them) at set times. We can’t control the number or timing of them. He has to endure endless hours of therapies where the goal is to do what someone tells you.

Just because a child has disabilities doesn’t mean that stop being a kid. And they should be expected to act like one. Have their own agenda. Do their own thing.

OK, Boo can only go where I go to in the Upsee, but he is in front, taking the lead, literally and metaphorically. I can’t tell you what that means to me. Or Boo. I wish I could show you how much he loves it, but I’d have to break my self-imposed picture/video ban to do so. So I had to get creative.

This is Boo (sporting his new hair cut) playing his first ever game of football with his sister in our garden. He had never even stood in our garden before. What a moment!

 

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The only thing that held Boo back that day was my incompetence in kicking. His CP, all his physical challenges were secondary.

OK, Boo, I’m following your lead. I can’t wait to see where the Upsee takes us next.

 

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Party blues

I was very nervous about yesterday. Very. But everyone told me it would be OK.

It wasn’t. It really wasn’t.

No one is to blame but me. I messed up. And it has me in a tailspin. I haven’t felt so sad in a long while.

The occasion for all this sadness? A party. A kid’s birthday party.

You see a few weeks ago, Boo got his first ever invite to a birthday party that wasn’t a celebration for family or a close family friend. He recently moved into the nursery room at his daycare (that could occasion about 20 separate blog posts, but I won’t go into details now). Some of those kids are turning 3 now and are about to go into preschool. Boo, of course, was 2 in April, or really 2 last month. He won’t move into preschool for at least another 9 months.

When I got the party invitation in his nursery bag, I felt so happy. He had made friends. A child wanted him to go to their party. They had included him. It was another milestone in his life. It would be fun.

And then I got real. Hang on. This is a nursery invite. This is an invite from parents who, like me, work. All of us pick up and drop off at different times. Boo is dropped off after many other kids are and picked up before lots so we can do his therapies and spend time with him. I realised that the parents probably invited every child in the room. They might not know what Boo looked like and least of all that he has cerebral palsy. They might not know they were inviting a child to their son’s party who could only sit for short periods in one position, who couldn’t walk and who was speech delayed.

Did that matter, I wondered? Boo had been to parties before. We had always just adapted things. Like at the party of one of Sissyboo’s friend’s siblings, who also turned 3 recently. Boo danced, played musical bumps with me helping, played pass the parcel, with some assistance and decorated his party bag with the help of his big sister and some other big girls who wanted to help him. He had a great time.

I looked hard at the invite. Maybe I shouldn’t take him. Maybe I should make an excuse to avoid any awkwardness.

Wait, hang on. Was I actively excluding my child? Crikey, if I exclude Boo from activities what hope does the rest of life hold? No, he’d been invited and the little boy whose party it was told me one morning at drop off how pleased he was his friend Boo could come.

And it was at a sports centre. I knew there was a soft play there. Sissyboo had been to parties there. It was a nice soft play, much nicer during parties than in the general free for all. Not so busy, better for Boo. This could be fun. I could get to meet the other parents in the new room. Tell them about Boo, if they wanted to know. (I know people talk about him. I know they think silly things, rumours I could good-humouredly dispel.)

But I should probably tell the Mum he has CP, right, when I texted (the modern way to do parties) to say he could come? I mentioned my worries to nursery. They said not to be silly. Everyone knew Boo had CP.

And when I thought about telling her some more I started to worry that if I did so, she might think I was asking her to do something about it. I know it’s your son’s party but have you thought enough about mine? Have you ensured your party is fully accessible? Of course, I didn’t think that or want her to think I thought that.

I didn’t want to give her anything else to worry about or make her feel she needed to do anything to accommodate Boo. Parties are stressful enough, I know. I asked some friends. They said not to say. Nursery said the other parents knew anyway (the standing frame and Bee chair that have been in the nursery room for the past 2 months are a pretty big clue a non-typical child has moved in). And Boo loves soft play. We’d join in as we could and not make a fuss.

And so we went.

When we got there, I was directed to a room in the opposite direction from the soft play. I started to worry. Crikey what sort of party was this going to be? I pushed Boo through the door in his adapted buggy as others ran past him and breathed sigh of relief when I saw a bouncy castle and small inflatable soft play area. Boo would love this. Great.

And then we approached the Mum. She couldn’t conceal the look of surprise and confusion when she saw me push Boo in. She clearly had no idea he had CP. Her eyes showed clearly that  she wondered what was wrong with him. Trust me, I’ve seen that look before. Quite often. I decided not to say anything and just get on with the party.

Lots of kids called Boo’s name and waved at him and talked to him, in between running between the two inflatables. I bounced him up and down and he was having fun.

For the first 5 minutes. And then the two 16-year-old party hosts called all the kids over and asked them to sit on a crash mat. Um no. Not for us. OK, what’s coming I thought? Boo looked at me wondering what was going on.

And then we learned we were at a sports party. There were going to be running races, obstacle courses, relays etc for 90 minutes. Children would have to jump onto vaults, walk on up-turned benches, balance on beams, jump and run. Everything Boo can’t do. The children were told to march to the door and go outside (great I hadn’t bought sun cream or a hat either – neither had any parents, it turned out). Oh crap, I thought, what do I do?

I had to explain to the Mum. I went over and her look of concern was now grave. She had obviously asked another parent why that child was bouncing on the bouncy castle on his back next to his mum and not running around with the rest of the kids. Evidently, she had been told the reason.

I said that I was sorry, I thought she knew and I had misunderstood the nature of the party. I’d wrongly assumed it was a soft play party. I said with my best inane smile and stiff upper lip (yes: I know that’s a contradiction in terms) that Boo wouldn’t be able to join in the activities, but no matter. Sadly, the bouncy castle and indoor inflatables had been turned off so we couldn’t use those. I said he would go and watch his friends for a bit but we might leave early.

She said she wished I’d told her. She felt awful that I hadn’t. If only I’d told her, she added.

And so I felt awful. Not only did I have to confront (again) the extent of what my lovely, amazing little boy can’t do, but I had to feel bad for ruining a kid’s party by taking a child who couldn’t participate.

But if I had told her, how could that have changed things? I can’t imagine she would have said he’s no longer invited don’t bring him. It would have created stress and hassle for her. This was a totally inaccessible, unadaptable party. I can’t see what accommodations could have been made.

The 16-year-old girls running it looked at Boo like he was an alien from another planet when they dared to make eye contact with him at all. They wouldn’t have known how to involve him and if I had tried to drag him round the obstacle course, and my back had held up, then the party would have turned out to be all about Boo. That wouldn’t have been right.

The mum begged me not to take Boo home from the party early as it would make her feel bad. I fought back the tears.

Honestly, I say this without a shred of self pity. I am the least important person in my life. My feelings are always at the bottom of my list. But yesterday something inside me was screaming that I wanted to look after my feelings for once. Not hers. I wanted to go. It was all so awful. To confront his difference so painfully.

But I did what I always did and made some woman I don’t know feel alright by sitting on the floor next to Boo in his buggy in horrible humidity while he watched his friends do things he will likely never be able to do. All I wanted to do was come home,

I tried to make small talk with other parents. We never got past a sentence. Some made cringingly obvious excuses. It was awful.

I have never felt like such a pariah before. They didn’t know what to do with us. But what hurt more was that with one exception, a lovely Mum who has invited Boo to her son’s party at a farm next month, none of them even said hi to Boo. The kids love him. That was clear. The parents don’t know what to do with him. That was clearer still.

That 90 minutes felt like many hours. Boo was OK. If he had been distressed or upset I would have brought him home in a heartbeat. But I can’t honestly say he had fun.

When I collected Boo’s party bag we were thanked for coming, but the look of discomfort on the Mum’s face was palpable. I think we messed up her big day. Just by showing up. That hurts. Let me tell you. It really, physically hurts in the pit of my stomach.

Please don’t get me wrong. I mean what I say. I feel that I messed up. No one else. I will think twice about accepting party invites for Boo again and will try to talk to parents beforehand in a way that doesn’t make it feel like I am asking for special consideration for Boo. I don’t want to spoil other people’s big days, but as Boo gets older and more aware I want to protect him from such experiences. I don’t want him to feel sad or unwelcome or a pain.

It was so hard. In the cold light of day, I can see that this was a party that was tough on lots of children. It was too hot to be running around outside without hats and suncream (we had been told it was an indoor party). Some kids (as Sissyboo would have been at that age) were very shy and didn’t join in with this mini-Olympics at all. Others were a bit too tottery on their feet and one hurt himself. (It turned out the party organisers thought  the birthday boy and most of his friends were 4!) Boo wasn’t the only one who found joining in hard.

But he couldn’t join in at all. That’s an important difference.

This is the first time I have ever hit the inaccessibility wall. I have never been in a place or situation where we couldn’t adapt things so that Boo got lots out of the experience. This is the first time I have seen absolute exclusion in operation. And it frightened me. Really frightened me.

Is this what being in mainstream school would be like for him? Is this what his life will be like?

No: I am not having it. I am NOT. Boo was not born to sit and watch other people do things. He is a bright, sociable, funny and talented human being. He is born to do things, great things even. I know it. I just know it.

Sad as I am today, and I think I have wept more typing this post than any I have every written for this blog, I will never forget that. Never.

 

 

Cutting it Fine

Milestones very easily become millstones, if you’re not careful, in this odd little life of ours. I spend a lot of my time hoping that Boo will reach as many physical and cognitive milestones as possible. And I spend the rest of it trying to persuade myself it doesn’t matter if he doesn’t get there. Boo just does things in his own way. Each inchstone (and there have been a bundle of those lately, which I hope to write about in the coming weeks) is hard won and much appreciated by all of us.

But of course gross and fine motor and cognitive milestones are only part of growing up. There are loads of other firsts in our kids’ lives that matter. Hugely. And many of them, I have come to realise, we have total control over. Like the first time we took Boo to the beach, or he ate ice cream. All happy, lovely milestones that you don’t need to do several hundred hours of physio to make happen.

But one of these firsts I have been putting off I have deferring for ages. You see, I just didn’t want to get Boo’s hair cut. If you read this blog regularly and catch the odd glimpses of him I put on here, you’ll know he’s a blondie. A gorgeous, wavy blondie, with little curls at the base of his neck.

 

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For months now, various people have been asking me when we are going to get his hair cut. Every time I felt sad. And I didn’t know why. I think people thought I wanted to keep my baby looking like a baby for as long as possible. Maybe I did, but maybe not. I think it was that he just looked so lovely as he was.

It was also, I think, that it felt a bit like lopping off Samson’s locks. It’s not exactly that I thought he would lose his Boo superhero strength with a trim, but that hair on my boy’s head was hard won, let me tell you.

I waited so long for my little, beautiful bald 29-weeker to lose the fine hair that covered his body as it should have continued to do in the womb for many weeks and grow some on his head. I wasn’t ready quite ready to see it go.

 

But, of course, the weather has been so hot lately. And boy does Boo feel the heat. Ex-premmies often struggle with regulating their body temperature. Kids and adults with cerebral palsy often do, too. Kids who have to wear dynamic orthotics (basically a lycra wetsuit which Boo wears all day under his clothes) feel it even more. I couldn’t do anything about his prematurity, the CP or the suit, but I could get his hair cut.

I have to admit, I was nervous. Boo has some sensory issues. It’s not a diagnosed problem, but like many kids with CP, he reacts with various primitive reflexes to unfamiliar sensory experiences. He usually accommodates himself to them quite well quite quickly, but although I brush his hair regularly, I had never approached him with a pair of scissors before. How would he feel about that? Would it be a nightmare? For him? For the haridresser? For me?

At Sissyboo’s last cut (we take her to a lovely, local kids hairdresser) I talked through my anxieties. The hairdresser, who first met Boo when he weighed about 5.5 lbs, shortly after leaving the NICU tried to put my fears at rest. They had lots of experience with children who couldn’t sit independently (he would sit on my lap) scared children or children with sensory issues and physical disabilities, she explained. They would cope.

So, with some nerves, after a terribly long and hot car journey, we went into the salon. Boo was so hot and bothered, they found him an ice lolly to cool him down as he watched his sister showing her little brother how not to be scared.

And you know what? He wasn’t. There was a bit of wriggling, eye scrunching and some sensory discomfort at times, but mostly he was fine. As the locks were lopped, I felt a bit sad, but they made such a fuss of him. Sissyboo took pictures with my phone and they took one with a digital camera to put on the wall. They also kept some hair, popped it in an envelope and gave him a certificate with his name and date on.

When we came home, Sissyboo decorated the envelope, as I looked at my little boy looking a little less little and lot more like a rapidly growing boy.

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It was a first I put off and I can see why. But in the event, it was another reminder of how far he’s come. The little boy I could barely dare imagine in those days in the NICU.

 

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School’s Out and My Little Girl’s All Grown Up

FOr #ThrowbackThursday (or #FlashbackFriday as I’m a day late, a post about Sissyboo finishing Reception. This week she finished Year 1. I didn’t think when I wrote this post that it would be possible for me to be any prouder of her than I was then. But I was wrong. This year she has done so well in the reading and writing and sped ahead with her maths, which she was struggling with last year. She has done this while rehearsing hard and performing in her first dance show, learning the violin and getting her 700m swimming badge. And she has done all this while juggling her life with and responsibilities for Boo. We all do that, of course, but she is 6. She shouldn’t have to do many of the things she does. But she does. And she does them with care and grace. No wonder her fabulous end of year report began with a sentence about how she was a ‘caring, compassionate and extremely emotionally mature’ child who always wanted to look after everyone else in the class. I’m proud of you Sissyboo. So proud.

Premmeditations

Surrey schools finish for the summer holidays today and when the bell goes at 13:30, Sissyboo will finish her reception year. I cannot believe how quickly the time has gone. It seems only five minutes ago that I was sewing on a gazillion name labels (repeat after me: iron on next time; iron on, OK?), getting school uniform and hoping she wouldn’t grow out of her Clark’s shoes too quickly.

Then came the bewildering two settling in weeks of alternate mornings and afternoons depending on which half of the alphabet your child’s surname fell into, the colour of your birthstone and whether or not there was a ‘r’ in the month. I swear it was designed to be as awkward as possible to test parents’ organisational skills. These would be much needed throughout the year as we were instructed to make innovational outfits for space week, come up with fundraising…

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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

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.

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

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.

Premmeditations

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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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