Monday 20 December 2010

We have splashed out on the rolls royce of blenders

Zack's new diet of blended food is going extremely well, he is putting on weight and growing. We are now completely off the formula milk he was given and his vomiting/refulx has much improved. 


With all these positive signs we have splashed out on the rolls royce of blenders, the Vitamix. Yes it is very expensive and ordinarily I wouldn't even contemplate paying so much money for a household item. However, having read the reviews of people who have bought one I thought it was well worth the investment given that Zack is now on a total blended diet. 


And oh my it is amazing. Here is a link to a video if you are that interested in it. 


Vitamix Video



Normally I would have blended Zack's food up then sieved it to ensure no lumps but not with the Vitamix, a.k.a. Boris. The other day we did a jacket potato complete with skin and it blended it up in less than 10 seconds to a smooth consistency. Wow. 


Now Zack can have anything with no worry of lumps blocking his tube. So glad we got Boris.




Zack went to his second Christmas party. His third one was cancelled due to the snow but is to be rearranged. 


Party number two was at his vision play-group. The Pants took his daddy along. Well he kept looking at him, a little confused as to why he was there, but showed him what he got up to at his play-group. This included making a christmas card, winning the pass the parcel, meeting Father Christmas again and getting another present. The lucky boy.


Talking of being a lucky boy I noticed that most of the presents under the tree are for his lordship. I mean how did that happen, I was only going to get him a few and now he has a lot. Still he's been a good boy and deserves to be spoilt now and again. 


We are all looking forward to Christmas and Zack his being his charming self for his daddy. Who came home having finished work last week and was astounded at how happy and good Zack was being in his chair. He enquired as to whether he was like this for me every day. Pretty much I said. See for yourselves.


Tuesday 14 December 2010

Something I stole

Here is something I have stolen or rather with their permission borrowed to share. This was written by a lovely lady who has a gorgeous little boy with disabilities. I think it explains perfectly how easily we take for granted the ordinary things in life and how for some a smile is one of the most complex things to perfect.




A CP Smile.
                                                                                                                                                                                                                                       The complexities that go in to a simple movement are unfathomable!
Something as simple as a smile, to you or I is no great undertaking.
To a child with a damaged brain, it is as complicated as reaching distant galaxies.
You have to be able to look, and you have to be able to see....and the two don’t always come together.
Then you have to register what you have seen, and send a message to the part of your brain that can then respond.
That message is like a Chinese whisper, and often gets lost in translation.
If, and this is a huge if. If that message gets back, you then need the control, desire and ability to reciprocate.
But the muscles have a mind of their own, and like a petulant child, refuse to co-operate.
Of course you must also understand the intention of the smile, or how do you know it is something you might wish to reciprocate.
And then it happens....you smile....and the journey is forgotten....only the destination is worth remembering.
Only for some, the journey is long, seemingly impossible. There are twists and turns and unexpected diversions.
Some of the bridges are down, and the only way through is to rebuild from the ground up.
So when you finally reach your destination, and you have got there with more than your share of scrapes and near misses....you will understand the celebrations at your arrival, for it has been long awaited and the stuff of dreams for many a year.

Sunday 5 December 2010

Yes SANTAAAAAAAAAAA complete with presents.

Tis the season for lots of parties, troll-la-la-la-lahhhhh la la laa laaaaah laaaaaaaaaaaaaah!!


Zack went to the first of three Xmas parties today. Yep, three. He's not even two years old and his social calendar can be likened to an A-list celebrity, well more like Z list but it's good to have a goal.


This one was at a rather nice hotel in Warrington and was organised by Families United. What can I say. It was brilliant. Lovely venue, gorgeous food for both adults and children. Children's entertainer and Santa.


Yes SANTAAAAAAAAAAA complete with presents. Oh and lets not forget the Mayor and Mrs Mayor. 


Zack had his new party outfit on and was looking very dapper. He started off the afternoon with a power nap whilst getting a PEG feed. Who needs to be awake to eat. After the twenty minute power nap, he woke up and looked in shock. I think he forgot that he was out and not at home. But it's okay, just change my bum and I will be ready to party.


He sang, or rather shook his musical instrument to some Christmas Carols. He met Santa and the Mayor and got a present, he even gave Santa a festive grin. He watched a puppet show, got bored with puppet show and decided to check out the other children. 


Finally he was kidnapped by another parent who wanted to meet him and have a cuddle. But what a brilliant afternoon. Oh well one down, two to go. Here's some pictures.


The Pants meets the Santa

He goes in for the present

OOOOOh what have we got dad?

Ho!Ho!Ho!

What's going on?

Oh hi dad, I got me some raffle tickets














Sunday 21 November 2010

He's just beaming

Zack has yet again managed to have a busier social life than myself. 


Wednesday morning meant an early get up for a spot of light Hydrotherapy. The sessions have been introduced by the wonderful ladies in the vision team (you know the ones that also run the play group for children with visual impairments.) Honestly they go beyond what they are meant to be doing and if it wasn't for them, we wouldn't have these much valued groups.


The hydrotherapy session was taking place at a special needs school in Warrington. They have a small pool there which children can use to get some extra therapy in very warm water. By the way it isn't just the water that's warm the whole blinking place is set to tropical heat weather. 


Zack and I arrived all bundled up having faced the windy, rainy weather outside to get changed in a changing room that was so hot I thought I was going to explode. One of the teachers took him to the pool and at first they laid him on a floaty mat. I knew he wouldn't like that as Zack likes to be upright in the water so he feels safe and secure. Sure enough grabby hands appeared, I suggested we put him in his swimming seat ring. Just a normal baby swim seat but Zack loves it. Once he was sat in his throne he could have quite happily floated around the pool for hours. Unfortunately a child can only stay in for twenty minutes due to the heat so having enjoyed his relaxing water therapy out we got, dressed and thrust once more into the great british autumn weather.  For once I was glad of the cold, Zack and I looked like beacons in that school.


This week Zack got fitted for some Piedro boots. These are to boots made to help support his ankles and feet when in his standing frame. Amazingly they also arrived this week so having been measured, fitted and tried on we are now the proud owner of some funky little shoes. Picture below.










On a secondary note to our visit for the shoe fitting. We had to go to the hospital for these appointments and normally it is an absolute bugger to find a parking spot. Well hold on, Zack now has his own special blue badge, therefore, when his chauffeur is driving (that's me), we can park in a disabled parking spot. Hallelujah. First appointment we parked right outside the door, second appointment, again, right outside the door. Wow, this badge thingy makes life really simple.




And to finish the week off on Saturday we took Zack to the Elisabeth Svendsen Trust It's a charity that specialises in providing donkey riding therapy for children with disabilities. They have a few centres across the UK and one in Manchester, which is where we found ourselves on Saturday morning. 


Dan took Zack in to the arena to meet his new friend, whose name I can't quite remember. Zack was the smallest child, youngest child and had the smallest donkey. At first his little legs couldn't fit over the saddle so he rode bare back, check out cowboy Zack.  The staff also gave him a supportive vest to wear to steady his posture, Zack that is not the Donkey, I mean it's not like the Pants is a hefty weight. 


I have never seen a child look so bewildered, he knew something was going on but he couldn't figure it out. Part way through the little session they took the vest off and he seemed to relax more. He had to ride his donkey around the arena and collect different colour rings then place the rings on a pole.


Then they ran a little with the donkeys. Zack loved this, his face lit up and even the teacher who was with him was saying, look at him, he's just beaming. He did nearly end up on the donkeys neck though but she didn't seem to mind. After it had all finished the lady leading the donkey said it was an excellent first ride, he had done brilliantly. 


What a fantastic charity, you can see how much all the children that take part gain from it and to think it's only down the road from us, we shall definitely go back again. But Zack nor his daddy will not be having a donkey of their own. No way, no donkeys in my back garden. They don't half make a noise.









Thursday 11 November 2010

Hey look at me

Took Zack to two play groups this week, the lucky boy. 


First one was the monthly group run by the vision specialist team. It was good, they had a bonfire theme but Zack was more interested in a little girl a year younger than him. She is very sweet but gets upset a bit as babies do, well he was fascinated by her crying. Wasn't interested in the fact he had a furry hat placed on his head or was shown a branch to represent the bonfire, nope, he was all about the ladies.


That same lady came along to play group number two run by one of the mummies from play group one (are you all keeping up).  Zack had the best day ever at this play group two, he loved it, he was smizing at everyone (smizing = smiling with his mouth and eyes, see Americas Next Top Model for reference). He even rolled over from his back to his sides, the little show off. 


At one point I put a little plastic frame over him that had toys dangling down. Toys, I don't need toys. Watch this, and he grabbed hold of the side and tried to pull himself up, all the while looking at his new little girl pal. If he could speak I'm sure he would say, hey look at me, look at meeee, look what I can do (in a Stewie Griffen voice, in my head that's what Zack sounds like). 


He was even a good boy in his car seat. What a delight.


Feeding is continuing to go well and I have now stopped giving him that horrid Infatrini Energy and no sick. Nope no sicky. It's fantastic. We still get a teeny bit here and there but over all it's a great improvement. We are now on three meals a day, two drinks of whole milk and a pump feed of just water at night. Amazing. He is even going to bed at around 8pm and sleeping through until 6.30am. Although I can't help but think that as I type this next week I will be saying oh God, what's with the waking in the night, or oh no the sickness is back. But for now, the Pants is just brilliant and amazing. 

Wednesday 10 November 2010

The ipad

Perhaps the Pants might get one of these when he is older.....seems like they are a good tool for communication.

http://www.nytimes.com/2010/10/31/nyregion/31owen.html?_r=1

Friday 5 November 2010

Strip just from the bottom half

What a hectic week. 


We went to collect Zack's new wheels, a Tom Cross Stroller from Wheelchair Services. It took a while for them to set it up as they had to make sure all the seating was set right for his measurements. 


The buggy is a special needs buggy aimed at supporting Zack in a better position and I have to admit once he was in it, he was extremely happy, sat upright, looking around at the world. He even smiled at us all. 


I on the other hand found it slightly upsetting. The buggy is bigger than I imagined and it was a bit of a shock to see him with a little chest strap on in this small chair surrounded by a big frame. When he is in it you know he is a child with a disability. It's hard to explain but seeing him in this type of chair makes it even more concrete that he does have additional needs. And I know he does and have accepted that he does but when it's as vivid and real as another piece of equipment in can be difficult to adjust to it.


Having said that I am now getting used to the chair. Here's a picture of him in it. See quite happy. Oh the last one was just before he decided to be a bit sick. 






We are going to test drive it this weekend. We need to purchase a hood and a rain cover for it before we can do winter adventures. 




We also went to see the Orthopaedic doctor at Alder Hey. He was really nice and had a good look at Zack to see how tight his tone was in his body. He said the likelihood is that if a child isn't sitting by two then it's unlikely they will walk. To be honest I have heard statements like this before and I take it with a pinch of salt. He's right Zack might not walk, then again, he might. He did say that he thinks he will probably be able to get around the house quite adequately but for his independence he will probably need a wheelchair. And if he can manage a power chair then we have to make sure his hands and thumbs don't get tight. Ha. Zack in a power chair I can see it now, he'd be zooming down the street up to no good. 


The doctor sent us for a hip x-ray. Dan took Zack in to the room. He came out ten minutes later, I asked if it all went okay. "Yep, fine" he replied, "The woman told me to put on a lead apron and strip just from the bottom half. I asked her if she meant me, she said no, just Zack." Dan continued to tell me that they just got his position right on the table and he decided to pee all over it, (Zack did, not Dan) the nurse said it happens all the time. Bet she loves her job. 


After the X-ray we went back to see the doctor. One out of two children with Cerebral Palsy usual have a problem with their hips and sockets because they aren't moving like a normal child should, so there bodies aren't being allowed to develop naturally. What you get are hip bones that aren't ground in properly to the socket. Zack's right hip is slightly on the edge so in order to stop it getting worse and dislocating they will consider doing botox injections so that the muscle has chance to move better and in effect move the hip socket into the correct position. 


The doctor showed us an x-ray of a six year old child who has similar conditions to Zack but has not been seen with regards to his hips. His was almost out of the socket and so he will need reconstructive surgery. I suppose by picking up on this now we could attempt to correct it. He also said that his standing frame and physio is good for him and to continue doing it. Oh and the other good thing was he hasn't got a curve in his back, he just slumps over a bit because of his lack of good head control. All babies start off curved and then pull up as they get stronger in the neck and back, Zack's curve may improve. It has so far and I think it will continue to do so. 


When we had finished the appointment we stopped in reception so I could put Zack's coat on. I looked down to see that his shoes where on the wrong feet. Yep, Dan had taken Zack in to get an X-ray and managed to get his shoes on incorrectly. I pointed it out. "Hmmm" Dan replied, "I thought they were hard to get on his feet." Poor child, what hope does he have of walking if his dad can't even get his shoe on the right way.


I am hoping that after this busy week we will calm down. In fact I said to Dan the other week I am not putting in any more appointments until after Christmas. Here's to the wind down.

Wednesday 3 November 2010

Jealous me. Not much.

Right the thing is I put in all the hard graft with Zack. I do all his therapy, his physio, play games with him, take him to playgroups, take him for walks, show him things, read to him etc etc. I don't mind doing all of this, in fact I love it and I am very lucky to not have to go to work so that I can spend my time helping him. 


But, why, when his dad is out working hard to look after the pennies does he get rewarded with the good stuff. Yep. The other evening Zack decided that now would be a good time to show how he can roll from his back to his side. 


I have been trying to get him to roll from his back to side for ages. I didn't believe that he could do it. So Dan showed me or rather showed off at how he got Zack to roll. And the little bugger did it again, both sides. It's was brilliant and a huge step forward.


Oh and before that Zack was on his mat and Dan was chatting to him and Zack was giving him lots of smiles when he did an agoooo noise back. Right. Now you decide you'd like to chat with your daddy as well. Hmph.


Jealous me. Not much.


(Very proud of Zack though. The sod hasn't done any rolling for me since the other night may be he's saving sitting, walking and bloody talking for his favourite person, Daddy!)

Sunday 31 October 2010

Halloween II

I don't think Zack quite appreciated his choice of Halloween outfit this year. I think it's fabulous.


He went to the Halloween party at F.un club and had a lovely time. Here's some pictures before the party.


Why mummy, why?





Daddy, please don't take me out the house like this




Spider squats



Spider box




I hate you. And you have got your manky tea-towels in the shot, silly woman




Thursday 28 October 2010

I wonder if she' ll give me a sticker next time.

Have been continuing with the torture routine and Zack is now getting used to it which means less screaming and carrying on.  He is doing well but I still can't help but think that when I am doing his stretches he is deliberately not allowing me to move part of his arm or leg just to show he's the boss. 


Managed to get back to doing his Advance therapy which has been hindered due to his reflux. In fact have managed to do quite a bit thanks to having some home appointments rather than outside visits. 


We had the physio round this week and she has put in the recommendation for Zack to have some Piedro boots fitted to give him some more stability in his legs. She mentioned that he might be better having leg splints to keep his feet and legs in-line as they are turning out slightly. I am not so sure about them, not because it's more "extra" special needs equipment but I not sure I like the thought of his legs being held in a position all day by splints. However having spoken to other people whose children have splints it seems that they are a good thing and some wearers aren't bothered by them at all and actually stand better in them. For now I think we are going to try the boots and see how we get on.


Zack's new car seat has arrived. The Mini Carro. I sat him in it in the house as a trial run and he was very happy. I took him out in it in the car and he HATES it. Oh my lord I thought he was going to explode or have a heart attack. Still, he was a little better on the ride home and as usual I will persevere as it has to get better. His mood improved when I started singing to him, but how many renditions of the Wheels on the bloody Bus do I need to go through to stop him having a fit of rage in his expensive car seat. 


In defence of this seat I have to say it is much better than our other one, more supportive and comfortable for his highness.  Maybe he just hates cars. I think it's the one time I wish he could talk and tell me what the problem is, I am not giving up though, he will get better. Fingers crossed. Either that or I'll just have to use public transport. Oh the thought of it.


We had gone to the dentist in the new car seat. Dentist likes to see the children early so they get used to them (early in their lives that is, not early in the day). She was very gentle and had a little look in his mouth and feel of his gums. His teeth, all three and a bit of them, are fine. She told me to brush them twice a day and that she can feel the other bottom four coming through. And that was it, see her again in six months.  Don't know about getting him used to it but I think by the time we finish visiting I'll have gotten over my fear of dentists. I wonder if she' ll give me a sticker next time. They had a nice selection.

Sunday 24 October 2010

It looks like a torture video







We took Zack to Brainwave this week for some extra help with physio. The place itself is only down the road  so it made a change not having to drive hundreds of miles for some therapy. 


Errrm where are we again?

Oh God there is no escape.





Brainwave offers a tailored programme of physiotherapy and we went for a two day assessment. They put together a short programme of exercises for us to do at home with Zack and assessed where he was in terms of his development.


It was really good to have a physio and occupational therapist for two full days just with Zack. I say two full days, but young man decided that he would take two naps throughout the day. 


It became clear that Zack is completely unaware that the things at the end of his arms are his hands and that he can use these to his advantage. His head control was good but he has a lot of stiffness in his hips and is stiffer in his right side than his left. The exercises we have combine stretching with play. At first I was a little unsure as to why we were doing similar exercises that I do with our NHS physio but by the end of the second day everything was much clearer and I now understand why we are doing what we are doing and to what affect this may have on Zack. 


Now the boy on the other hand was not at all happy being put through his paces. The first half of the DVD shows him screaming and crying his way through the stretches, it looks like a torture video. He was crying because his body hadn't been put into these stretches before and they were uncomfortable. The second half of the DVD he was much happier although at one point we had to stop filming as he decided he wanted to have a sleep. 


Before we left we were given all the equipment we needed to complete the therapy which included a new gym ball that smells like cat litter and a foam wedge for his tummy time, which by the way he is very good at. 


The overall idea is that the therapy will help Zack to decrease his stiffness in his legs, begin to roll and move around on the floor and to play with his hands open. We go back in six months for an assessment and tweaks to the programme to take into account any changes.  


We've tried the programme twice at home, he still cries through the stretches but I've learnt to ignore them, after all it's for his benefit.


Next weekend is Halloween and boy have we got a great costume this year, but you'll all have to wait for the pictures. What a cruel parent I am.

Tuesday 5 October 2010

He was fine, didn't even cry

Short update.


Zack has been to Rainbow Legacy House. It's in Chorley and they do Conductive Education sessions as well as run a fantastic nursery that caters for disabled and non-disabled children. 


The Pants went for an assessment there and whilst he moaned a bit at first by the end of the session he was smiling away. The conductor said that she thinks he would benefit from the sessions, unfortunately there isn't any space at the moment. So we wait.


We also took a look at the nursery which did look good so may be thinking of sending him there for a couple of days so that he can have his conductive education sessions in the morning and afternoons in the nursery. But I don't think this would be until next year and even then very part-time. 


Physiotherapy


He had a good physio session on Monday. Was quite smiley throughout and did a lot of work. The physio then checked him out in his standing frame and adjusted the height. (Must be his new diet making him grow). She also made the frame more upright so that he is having to work harder. Zack didn't mind at all and the physio was impressed at how good he is in his frame. She mentioned that he is holding his neck better which is a good thing. He gets a gold star for that day.


Finally, today his daddy took him for his MMR jab and booster. I am still a wimp when it comes to needles. I was expecting him to come back upset and moaning but no apparently he was fine, didn't even cry. Dan said he smiled after the first injection. That's my boy, tough little cookie. (Am surprised though, as sometimes he can be a right drama queen).

Monday 4 October 2010

Goodnight Ozzy

We need to say goodbye to someone. One of our cats, Ozzy was hit and killed by a car on our road last week. This is the second cat we have lost on the road. It's not a busy road, a quiet road but every so often you get some idiots speeding down without a thought for animals or people walking their dogs. 


Ozzy was a wonderful cat, a real character, I love all our cats (we now have only two) but Ozzy was special, had him since he was six weeks old and I miss him dearly. He will always be in our hearts. 


Since Zack was born he took, shall we say an active interest in the new addition to our family. The active interest usually meant sleeping in every possible Zack related item, prams, strollers, his cot, on top of him. I always said his full name was Ozzy Noooooooo! 


Anyway I don't want to dwell, I just want to say goodbye, you went too soon and you will always be in my heart. 


Farewell to an amazing cat.


Friday 24 September 2010

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. 

Sunday 19 September 2010

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.

Friday 17 September 2010

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.

Thursday 9 September 2010

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
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
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.

I want to alleviate the fear of death

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