Are you saying his hearing has improved?

After two hours in the hospital waiting room Zack and I finally get to meet the elusive ENT (Ear Nose Throat) consultant as well as our usual Audiologist consultant, to discuss Zack's middle ear problem.


ENT man discussed the use of grommets and suggested that it may be worth waiting until Zack was a little older to see if the glue ear went away of it's own accord. He also suggested that we increase Zack's hearing aids by 30% to see if they make a difference.


Sometimes in appointments you don't feel like you have time to think, to digest what is being said, a lot takes place and you need time to reflect. Some discussion went on between the two doctors about testing Zack's hearing again with and without his hearing aids. Suggestions of sedation was also mentioned. Then the lady that makes Zack's ear moulds for his hearing aids comes in and another suggestion is made of getting Zack's moulds redone (the plastic bit that goes in the ear for the hearing aid).


We follow ear mould lady into another room and she disappears for a minute. I have a think. Wait a minute......this isn't right. The lady comes back and I say to her that I don't understand why we are increasing the hearing aid volume when there is no difference in Zack's hearing with or without the hearing aids. His hearing is good, it's not that he can't hear, he can hear. She looks at me and says so are you saying his hearing has improved? Yes I say. Well that's not what they got in there. Hang on I say, they think I am saying his hearing has got worse and even with his hearing aids in it isn't improved? Noooooooo I say, that's completely wrong, he can hear, he hears me creeping into his room, he hears his little music box, he listens to me on the phone. What is wrong with these people I have been telling them this all along. So there is not point in increasing his hearing aids. Oh for the love of God.


The lady disappears again. Comes back. Yep, definitely not what they thought you were saying (I love how I get blamed for this). Oh and the audiologist has gone but but ear mould lady will get hold of her this afternoon.


That afternoon I get a phone call it's ear mould woman again. Well they all thought you were saying that his hearing had got worse. No I said for the umpteenth time, it's improved. So she suggested I can either try and get his hearing re-tested or come back to the joint clinic. I did say I didn't see what the point of that would be as the doctor was more or less suggesting no grommets as A) a G.A can be quite dangerous for a small child and has risks associated with it and B) They only last about 6 months. 


We then discussed if I might be able to get Zack to sleep at a required time in the day so they could test his hearing. I'll try I said but I can't be sure if he would go to sleep. The lady on the phone asked me how long it might take for me to get him to go to sleep. How the hell should I know. In the end I just said send me an appointment for this hearing test and we'll try to get him to sleep on the day at your required time. Losing the will to live.


To be honest, I was so fed up with the whole thing I just thought they can all push off. I know he can hear me and to prove a point I shook his little rattle really quietly out of view and he smiled. Every time. 


I think some doctors need to start listening to parents and respecting what they say rather than thinking that just because a child has severe brain damage they will never improve. They will always improve, might not be in great leaps and bounds but there will always be progress. Plus don't under-estimate Zack he has a lot to prove and is extremely stubborn. 

Grinning like a Cheshire Cat

This weekend Zack has spent a large proportion of his time grinning like a Cheshire Cat. I don't know what he finds so amusing. It might be the fact that he is feeling better and getting over his cold, it might be that he is enjoying his new diet of blended food (he had a dairylea sandwich today) or may be it's because he gets to stay up late to watch X-Factor.


Whatever the reason it's brilliant. You don't even have to do anything to entertain him, we just look at him and he gives you the biggest gummy grin ever. He did this constantly from 3pm today until 9pm, then he had to go to bed. Hope he is as happy tomorrow. The big gummy grinning bear.

Only downside is that they fall out

Zack went for a hearing test this week. I explained to the audiologist consultant that I no longer use his hearing aids because I cannot notice any difference. So we had the old hearing test, which compiled of a lady shaking a ball at Zack and him smiling, the doctor calling Zack's name and the strange old science fiction noise. He did respond to all this, it may not have been turning of his head but he definitely heard the noises.


The doctor then checked his glue ear and it was still there and very flat (he does have a cold at the moment). We decided to meet with the Ear Nose and Throat doctor to discuss having grommets put in Zack's ears. This would drain the fluid and hopefully improve his hearing. Only downside is that they fall out and the glue ear can come back. 


I mentioned that we were thinking of getting Zack's PEG changed to a Mic-Key button and would like everything done at once, save having to give him several General Anesthetics. They could effectively do his grommets, peg to a mic-key and a brainstem hearing test all during this one operation. Appointment with ENT man is next week, we will see what happens.

From now on we go our own way

So the blended diet is going well. We have had avocado, yoghurt, weetabix, bananna, Dairylea triangles and pureed baby food. What is more....no puking. 


A lovely lady I emailed on a forum I frequent very kindly lent me a book about homemade blended formulae and it is brilliant. Packed with information, full of good reasons for real food and makes complete sense to me. There is an article in the book about the psychological impact of feeding your child medical based milk products and how naturally we want to nurture our children with real food. Very often you feel your instincts as a parent are suffocated as you rely on doctors and health professionals to tell you what to give your child. No more I say, from now on we go our own way, I have to trust what I think is right for Zack so you can all get lost with your calorie rich, made-up, sugar heavy milk, the Pants wants his avocado.


The book can be found on this website which is also great for help with feeding children who have difficulty eating orally, lots of good articles on here. 


New Vis





Zack and I have found a new hangout. Well more to the point I have discovered a Starbucks five minutes from Marks and Spencer Gemini. Yep, Burtonwood Services. One happened to be on her way to Gemini when I saw the pretty green sign for Starbucks (for me that's like leaving advertising for a crack addict). Off we went to the other side of the motorway and a medium Coffee Frappacino, bliss.  Also, Zack thought he was on his holidays again as we were sat in a motorway service station, it was win win all round.


The Starbucks lady who brought my drink over asked if I wanted a high chair for Zack. I explained briefly that no it was okay he can't sit very well in them as he has special needs. An elderly lady across from me may have heard the conversation or she may have just noticed that Zack isn't like other 18 month babies but after she finished her coffee she came over to our table. She said "I just wanted to say that I think you're doing a wonderful job and I just hope that you get all the support you need when he is older." I thanked her and told her that we do get lots of support now but that was nice of her to comment.  I would much prefer someone to come and talk to us than just stare, we do get a few starers now and then. A brief stare is fine but long staring, well that's just rude.  Anyway, it was a nice compliment off a lovely stranger. 


Ooh we also saw a coach pull in with blacked out windows. Hmmmmm who could this be, a band, footballers, nope a load of blokes in grey and yellow tracksuits, no idea who they were but I did wonder if we would see any celebrities if we sat here all day drinking coffee frappacinos. Any excuse to fuel my addiction.

We are in on the secret

Some lovely lady on a forum I go on posted a link to this article and I just wanted to pop it in my blog because it is exactly how I feel about Zack. I am so sick and tired of reading depressing articles about children with disabilities and what this lady says about society judging people on the merits of their achievements is so true. I think she is right, we are in on the secret and the secret makes you very, very happy indeed. Will most definitely be purchasing the book.

Profoundly disabled: 'We wouldn't have her any other way'

Rebecca Elliott has become used to the pitying looks her profoundly disabled daughter attracts. But to her parents – and her little brother – Clemmie is perfect

Tuesday, 7 September 2010

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DAVID SANDISON

Rebecca Elliott, above centre, with her profoundly disabled daughter Clemmie, right. She has been inspired to write a children's book about disabled children - her son, Toby, above left, provides the book's narrative voice

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I'm lying next to my little girl, looking into her wide eyes while she smiles that random serene smile, and holds my hand tighter than tight. She is utterly happy; she wants for nothing; she doesn't complain; she's not selfish or jealous or needy: she's just content and perfect and loved. Time like this with Clemmie should be available on the NHS – it is the most glorious therapy.

My five-year-old daughter Clementine is profoundly mentally and physically disabled. Life with Clemmie is, however, not the classic tear-jerking tale of trauma and tragedy through which, as her parents, we plough on because that is our lot. I absolutely love being the parent of a disabled child. Since having Clemmie I've been let in on a little-known secret: profoundly disabled people are awesome.

Believe me I could rant with the best of them about the hardships involved in bringing up a child with a disability – the discrimination, lack of social care, funding, respite and support; and it's incredibly important that these issues are brought to the fore. But these are not negative things about Clemmie – they are negative things about the way our society deals with her. Clemmie herself is not a negative. As with any child, there are ups and downs, good days and not-so-good days, and she has acquired an assortment of health issues. But she is also great company – a pure joy to be around – and very positively touches the hearts of anyone who spends time with her.

Children can see it. They are free from prejudice and have a natural curiosity and acceptance of all things different. This morning, out walking with Clemmie, other children smiled at us, said to their friends, "Did you see that girl?" One girl asked to hold her hand. In contrast, any adults we pass for the most part try desperately not to look our way, stare with frowning faces when they think we cannot see, and, if our eyes happen to meet, give the old teeth-sucking smile – the one that says "I'm so sorry". I appreciate their compassion, but what happens to us that turns our eager childhood acceptance of difference and disability into awkward pity and unease?

In this cynical, meritocratic world we have become fixated with milestone-reaching, SATs testing and parental one-upmanship. We are also taught that success and achievement are the things that gives us our worth, that possessions and measurable accomplishments bring us happiness. Unsurprisingly, if severely disabled children are mentioned at all in mainstream media it is invariably in the context of that bitter-sweet tale of parents coping and ploughing on despite it all. If disabled children ever appear in children's books it is usually in a "conquering all odds" way: "Yes he may be disabled and that's sad but look – little Jimmy's joining in anyway! He's normal after all!" It's the idea that a person's worth depends on their ability to perform in at least one sphere of their lives. Hence television programmes such as Autistic Superstars, featuring enormously talented children with autism displaying their skills. The audience can cope with this, even see it as uplifting, because the children have a saving grace, as it were; they can contribute, they can achieve.

Profoundly disabled people, on the other hand, we don't really know what to make of. There is no achievement, no normality – it's just all too hideously depressing to contemplate. We don't even know how to comfort the poor parents. There's always the classic "Well, you just don't know how much she's aware of – just look at Stephen Hawking!" line – to which I respond, "Stephen Hawking has profound physical disabilities but not mental disabilities. My daughter, on the other hand, was born with catastrophic brain damage with most of her cerebral hemispheres destroyed and replaced with fluid-filled cysts. It's unlikely that she understands much at all." This admittedly unrelenting reply, although said with a smile, often leaves the poor person floundering around desperately trying to think of some other kind of message of hope for our unfortunate family.

Not everyone is so nervous around disability, of course. On that same walk with Clemmie one woman asked what condition my daughter had, stroked her hair and told her she was gorgeous. The woman told me she used to work with disabled children. Ahh, now it's clear – she knows what the others don't; she's in on the secret. She knows that the profoundly disabled can change your life and whole world view not through achievement, not by doing, but just by being.

My husband Matthew and I were just as unaware of this secret five years ago when, after a perfect pregnancy, Clementine was born via an emergency Caesarian at the end of a hellishly long and unfruitful labour, and her limp and silent body was whisked away to the special care baby unit. The following fortnight was a blur; waiting for her to wake up, thinking we were going to lose her, being shipped around from hospital to hospital. Eventually, we brought her home, a bit shell-shocked but overwhelmingly happy that our beautiful little girl had made what seemed to be a miraculous recovery. It soon became clear, however, that she was not developing at all as she should, and at five months old she had an MRI brain scan. The neurologist told us that Clemmie had profound brain damage, and that in fact he had only ever seen one other case this severe in 25 years.

A shocking and heartbreaking discovery, of course, but, after we found out the full extent of Clemmie's disabilities it was easier to come to terms with, and rather than making us love her any less, if anything we loved her more. We started to enjoy Clemmie for who she is, rather than mourn the loss of who she might have been, and I can honestly say we wouldn't have her any other way. She is perfect. She's our fabulous, funny, curly-haired little girl who does nothing and is perfect just because of her uniqueness.

It is this celebration of difference, of life being better because of the existence of children with disabilities, of my little girl being perfect because of her disabilities – not in spite of them – that we so rarely hear about. Scope's marvellous In The Picture campaign was set up to encourage children's picture- book writers and illustrators to include more disabled characters in their work. While this has admirably set the ball rolling in the right direction, it seems that severely mentally and physically disabled children are still almost entirely unrepresented. Part of the reason may be that it is seen as a difficult area to wander into for an author or illustrator who has no first-hand experiences of such disability – there is a fear of offending and a trepidation about entering unknown territory.

I have been an author/illustrator of children's books for eight years and, having no such fear of offending, set about writing a picture book starring my profoundly disabled little girl. It also features my son Toby, aged two. The way Toby interacts with his big sister is naturally so joyful, so heart-warming, so interesting and so hilarious that the book just wrote itself. It starts "My big sister Clemmie is my best friend – she can't walk, talk, move around much, cook macaroni, pilot a plane, juggle or do algebra. I don't know why she doesn't do these things. Just Because." After that, Toby gives us his reasons why he believes Clemmie is the best sister ever; she's not mean like other sisters can be, she's a lot like a princess as they don't have to do a lot either, just sit and look pretty, she has enormous hair and she has an excellent wheelchair on which they recently travelled to the moon (although they did not visit Jupiter as well, just because).

First and foremost I just wanted to write a great picture book – the kind of book that inspires children to demand "Read it again" at the end – not make some grand political statement. By writing an entirely positive picture book which will perhaps have some effect on opening up the secret, wonderful world of the profoundly disabled to a bigger audience, I also wanted to nurture that unprejudiced acceptance present in all children.

I also didn't write the book to preach some moral message but I think it does subtly convey the idea that our worth is not in doing – in achieving, acquiring and winning, but rather in being. Clemmie proves to me that you don't have to do anything, to achieve anything, indeed to walk, or talk or dance or sing in order to be utterly perfect, enchanting and loved.

Just Because by Rebecca Elliott (Lion Hudson, £5.99). To order this book at the special price of £5.69 (free p&p), go to Independentbooksdirect.co.uk or call 0870 0798897

How to respond to a disabled child

* Don't be scared to look – it's human nature to glance, but don't stand and stare if you feel uncomfortable or shocked.

* Don't be afraid to ask questions. Try to act as you would with any another child. Rather than looking away, pointing, or ignoring a child with disabilities, engage them even if you don't know how they will respond.

* Don't presume the adult with the child is a carer – it's more likely to be the parent.

* Don't feel embarrassed if your child asks questions. In general, children don't understand disabilities. They don't have preconceived ideas about what is considered "normal", and they're unlikely to offend.

* Offer help and open doors. It's really helpful and not patronising to hold a door open for somebody pushing a wheelchair.

Surely his stomach wants to digest some avocado and banana

One was looking back at some past blogs and noticed I had nine comments on one post. Ooooh nine comments. So I took a look. Spam. Spam, spam and more spam. Before I managed to moderate my comments, that is say yay or nay before they are published I seem to have acquired a bunch of them. Comments such as ooh nice blog can I interest you in some luggage, or perhaps you might like to visit the casino and if you have time why not try some of the old favourite, Viagra. Needless to say spam comments have now been deleted, but feel free to comment I always like some feedback.


It's a quiet week for Zack and I, good though as I don't have to dash round to appointments, so we is chillin'.


Zack is on a new food, a high energy one with extra calories. He is still puking. Although I have decided to give him some 'real' food down his tube. Blenderised that is. I think those professional health people frown upon it, I think to hell with them surely his stomach wants to digest some avocado and banana. He had some of this green puree this morning and well what do you know, no puking. So slowly I will add in some real food here and there. Trouble is I have been so used to giving Zack this milk what real food can I give to an 18 month old, do they just eat anything and everything? 


Sainsburys is coming in a bit, they'll have lots of food, maybe it will help my dilema as I put away the chocolate brownies and peanut butter.

Zack's first holiday

The Pants has been on his jollies to Weymouth, it was brilliant. Car journey down not too bad, he did a bit of moaning here and there but all in all Dan was very well behaved. Zack on the other hand was quite good. He had a bit of a moan in his seat but it was bearable to say the least. 


We stopped at a caravan park, one of those Haven Holiday places. I have to say I was most impressed but mainly I was extremely excited to be reliving my youth and staying in accommodation that is so close to your neighbour you can here their conversations. Zack thought being on holiday was the best thing. He got to go swimming every morning, then we would go out for a stroll into Weymouth, or Lyme Regis, have a spot of lunch, come back to the caravan, have a nap and then out again for the evening. No going to bed at 7.30pm nope much later than that and straight to sleep in his travel cot. 


Zack had his first bucket and spade complete with paper flags, went on the beach for the first time and watched his Daddy try copious amounts of real ale. I just got to eat a lot, oh and have very nice ice-creams.


Here's some pictures.

Yes Zack, we is on our holidays

I love my daddy

Ready for our day out

Errrm are you sure I can drink this?

First time on the beach