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…



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!



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.






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.



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.


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.




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.


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.


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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