In Loving Memory

Hello to all readers of Caroline's blog. This is her husband Mark writing.
It is with deepest sadness that I must say that my beautiful wife Caroline passed away on Christmas day 2013. She was only 36 years of age.

Myself and Christopher (who turned 3 years old at the end of December) now have to continue through life on our own, which at the moment seems like an impossible task.
Anyone who met Caroline could not help but fall for her warm, sunny, bubbly nature. She gave her time selflessly to numerous charities and was known internationally for this blog.
Caroline was an absolutely wonderful mother. She loved Christopher more than anything else in the world and would have done anything for him. Any time that she had, she would spend with him reading, playing, doing crafts and cooking with him. She was even teaching him French!
Caroline was the most beautiful, amazing wife that a man could ever wish for. Her never-ending support and patience for everything that I did often surpassed my own.
The love and friendship that we shared is something that I will cherish for the rest of my life.

I wrote a poem for Caroline, which I read at her funeral. I had so many things that I wanted to say about this wonderful person that I had the privilege of being married to, I thought it was best summed up in a poem.

 

For Caroline

 

My life was most times empty
And often dark as night
Until the day you stole my heart
And filled my world with light.

 

Your happiness infected me
Your grace taught me to share
Your presence filled my life with love
And joy beyond compare.

 

Anyone whose life you touched
Loved you from the start
Your sunshine personality
Your warm and caring heart.

 

You brought so much to those you met
Your strength, your light, your hope
Your courage in what life dealt you
Inspired us all to cope.

 

You gave your time so selflessly
To anyone in need
You made their pain more bearable
And paid your own no heed.

 

Your life has been a testament
To how we all should live
To see the good in all around
To smile, to strive, to give.

 

You gave more than you’ll ever know
Especially to me
Your life lives on in our wonderful child
And all that he will be.

 

If I could give my life for yours
For you to be here still
I would, for you deserve to live
More than I ever will.

 

It breaks my heart to say farewell
To you, my darling wife
I love you, and I always will
My one true love, my life.

1977 - 2013

Smart trikes- get your engineering hats on ladies!

We have spent hours perusing good,solid,easy to push smart trikes for toddlers. Our son has sat in at least six models and then started forming a protest by refusing to exit the push around red mini in the store! After much deliberation we went with the "Smart trike GB" available at Toys R Us in UK stores but there is a close runner up available online so keep reading.

 

One mother warned me that the more a trike has the more it goes wrong,steering is difficult and heavy for both parent and a child independently riding. Therefore we did not want activity centres attached to handle bars or any other unnecessary entertainment that bulked the product up after all going for a walk in a trike should be the only required fun!

 

Our son is quite tall so we needed something he has a chance of actually still using when he reaches aged three and the seat on this GB trike is quite far back so there is room for leg growth for when he can actually independently cycle the trike, at the moment we just push it using the handle.

 

We discarded the stupid,flimsy sun shade on the trike, the same shade type inflicts most models and are pointless, any suggestion of wind and the thing will break or flop right into your child's face! By two I feel a child no longer needs the side white bars encasing the seat as there is a simple strap that goes across the bike saddle and having the white rails seems a bit over dramatic when a child reaches two but if you were using this for a one and a half year old then probably they are great.

 

This is how the bike arrives! Time to get reading the instructions and men you do need to read the instructions as there are places where if you have not done something right then the whole bike needs to be taken apart again.

It only took my arthritic husband forty minuets, he has pincer hands and weak grip and push etc so if he can do this in forty minuets then it would be fairly easy to assemble for those without dexterity issues.

The strap across the saddle is so easy to operate no adaptation had to be done for me to be able to do and undo the buckle. It is one of those pinch both sides of a black plastic buckle and it will release and open.

Steers beautifully, very light weight, handle for the parent to use which is adjustable for a tall person and a short ,child like ,height ,lady like me.

 

The downside of this trike is the ridiculous position of the peddles, there are foot plates that flap out for a child to rest feet on when being pushed by the adult but they are too far back on the trike and my son ended up trailing his feet around so we had to add the black bars to the front of the trike, see picture, which can be removed when he starts peddling but also do not restrict the bikes movement in any way. However this is great if you have an engineer type husband around, if you do not then your child will have to do what I got my son to do before his ride was pimped, put both feet up on the front wheel protector, the blue bit over the wheel. This worked but it is so much easier with the adaptation in terms of keeping our sons feet safe and comfy. If you need this adaptation done to a smart trike because the trike is lighter and easier to push a child around in as opposed to a buggy, then contact REMAP, an organisation of volunteer old boy engineers who are amazing at pimping anything to suit anyone be it disabled parent or disabled child. They do not charge for the adaptations but obviously you need to have brought an item that fits most of your needs and your child's and these guys can tinker with the item to make it perfect rather than just manageable.

 

The runner up model is the "Smart Trike Cookie" again available from Toys R Us online and in store. It is also retailing at £49 as opposed to the GB trike which is £79. For me this was my first choice trike, it was very light, very receptive to my poor steering skills, my son and I went around the isles of the store happily and even up the dreaded arts and crafts area where plastic dinosaurs are just itching to be crashed into by a toddler. I liked the simplicity of this, I liked that the saddle was a little higher so easier for me to put my son on, not by much but still a tad easier. However we didn't go for it because the wheels are a bit smaller and cheaper than the GB model and stability was a major must when we set out to buy one of these, boys do go a bit manic eventually on these things and sturdiness was important for when this time comes.

 

I would say though that if you are looking for a buggy substitute that you can push easily, load your child into easily if you have poor reach and dexterity then this is the model for you but when your child grows you may have to think about buying a proper trike or a more sturdy and expensive smart trike. I also would like to point out I feel that the foot rests are in a better location than the GB model and perhaps therefore less of a palaver in terms of someone coming out to adapt a model for you.

 

Remember less is more, do not feel tempted by the £90 items, that was great advice from another mother. Having tried these more expensive trikes they are quite a bit heavier and so much more of a fuss to try and get a child into the saddle when dexterity and reach are major issues. Go for the cheaper models, don't think the trikes are going to last years but see them as a needed mobility aid expense to enable you to get your son or daughter out a bit, even into the back garden or street! The parenting handle acts as one of the few stick aids I can use because I can post my arms through the handle and rest and push at the same time. Enjoy one of these trikes,they are rapidly becoming one of my top ten essential must have items for a disabled parent and their toddler. I have done the must have items for baby care and will soon be compiling the toddler list.

 

X

 

 

 

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DO NOT BIN UMBILICAL CORDS,SAVE LIVES INSTEAD!

 

There is one simple choice to make as soon to be parents, disabled or not! Do you cut your babies umbilical cord ,rich in stem cells and throw it in the bin or ask for it to be preserved and donated to potentially save many lives where you live?


 

I am writing to ask if there is just one person reading this blog who is expecting or who knows someone who is, to get them to tell their gynaecologist that they would like to donate their new born's umbilical cord blood to the NHS cord bank. The doctors will sort it out from there and you need do no more except for pushing your wish at appointments! There is no paying for donation involved unless you are asking a bank to store stem cells for your specific purposes! There will be similar schemes running all over the world, google it,facebook it, or leave it up to the doctor to do but let them know your intentions in good time and not at the time of birth as the cord needs to be frozen immediately and rushed to the cord bank. It really is such a simple statement to make at your next anti natal visit and it could save potentially hundreds of lives!

I have taken the facts on donation from

http://www.nhsbt.nhs.uk/cordblood/

Cord blood fundamentally has the potential to help treat children and adults suffering with:

Lukeamia and other cancer malignancies such as lymphoma

Sickle cell disease and other diseases of blood cells.

Immunodeficiancies- where the auto immune system is faulty such as it is in childhood systemic Juvenile arthritis, JIA which ,as I keep saying, is nothing like old persons arthritis which is wear and tear of a few joints over many years of use, JIA is where the auto immune system turns on itself and eats the owners joints and sometimes organs in a matter of days.

Metabolic disorders- Where the body can not get rid of waste products.

 

There is a lot research going on in the use of stem cells, some scientists believe there is real potential to grow new bone matter and make natural bone joints so as long as the stem cell product matches the recipients then the need for plastic hips at my young age of eleven years old, could be a thing of the past.

 

Few scientists are interested in is cloning sheep and humans! I would doubt that there is a massively funded market for anyone planning on researching cloning of humans ! I therefore struggle to understand the religious argument against stem cell research.This is not a case of man playing God, this is simply medical science helping to save lives and enhance modern society productivity as many diseases could potentially be eradicated with stem cell transplanting. As a child with JIA I have had to undergo trial drugs that involve extensive, painful, tests to see if the medication worked. I was a human guinea pig because I was so very ill and my parents, out of sheer desperation, had to try something but they also had to watch me go through the pain of the trial. Those drugs are now used today as a first port of call in treating young children with JIA, many children and adults now live normal lives, they play football,can run around and have grown normally. I was and still am treated with steroids along side the modern medications but it is too late for me, I have not grown properly, I have short limbs and the effectiveness of steroids over the seventies and eighties has not had much effect on protecting my joints from permenant degeneration. I am thrilled that others have been helped through me and my friends going through trials but what we went through was invasive in order to get treatment updated for the modern generation.Stem cell/umbilical cord donation could transform lives without anyone needing to go through pain in the future. Where is donating something that has to be cut off the baby anyway, ungodly, the bin gets given more stem cells than humans in our hospitals!

 

I want to share with you the story of little Charlie Harris-Beard, a ten month old who was diagnosed with acute myeloid leukaemia.I want to thank Charlie's parents for allowing me to use his story, it is a very emotional story,please take a few minuets to think about this and if I can make any difference please get the message out to others,friends,family expecting babies. Go on the links at the bottom of this blog post, find out more about making a change.Charilie was just ten months old when he got diagnosed with acute Myeloid Leukameia. As a baby he was given four rounds of chemotherapy which did not work and left him incredibly sick. Charlie was given three months left to live,doctors suggested his only way of survival was through a bone marrow transplant which is effectively a stem cell transplant. Can you imagine the terror in his parents as they wondered whether or not their child would find a match in time? Lets face facts, few adults volunteer to go through the pain of bone marrow donation and it takes special, saintly people who do,yet no one need go through that pain if every mother in the UK donated their new borns umbilical cord, rich in stem cell blood! Fortunately Charlie's parents had the good sense to do all they could and they appealed for donations through their Facebook page- Cords4Life:Charlie's Legacy ,which was set up to raise awareness of cord donation and not only help Charlie but thousands like him.Charlie's parents found a match!! This little chap went from a gravely ill child, sick, weak, unable to walk ,yet upon receiving the transplant ,he took his first ever steps at Birmingham Childrens hospital! Things started to look up, Charlie had energy and was enjoying life up until he sadly relapsed a few months later. Back at the old chemotherapy, there seemed to be a glimmer of hope,he seemed well enough to undergo another stem cell transplant but unfortunately he got very sick and too ill to undergo it. His parents were told that Charlie had weeks left and there was no more that could be done for him in the UK, a story so often heard by so many of us who have severe illness. His parents ,still fighting for Charlie who was fighting for his life, went to seek international help and knowledge, they found out about a trial but before he could have the treatment their baby had to go through painful and invasive tests to see if he could be a candidate. He was able to be administered the treatment but the drug failed. Never quitting, his parents and Charlie returned home and continued to look in every corner of the world to find help, they found another experimental treatment. Meanwhile their Facebook page soared through many readers hearts all of whom had read about Charlie's plight and all were desperate to know how and where they could donate their baby's umbilical cord. Sadly Charlie got Pneumonia and became too ill to start the new medication, his parents kept on fighting and sent out a petition to the UK government to ask that awareness and availability of umbilical cord donation be improved. The same day the petition was approved, 8th of Feb 2012, Charlie sadly passed away.

 

I know his parents would want to get Charlie's legacy out there, to make others aware of umbilical cord donation, to give countless children in the UK today, who are waiting for a bone marrow donation and a match, a chance at life. The only way medics can be sure matches are found in time is by having countless donations available. This is not just about saving ill children, if we want to get down to nitty gritty politics or someone is feeling all a bit Tory and wondering how much cord donation costs the tax payer, well lets imagine a world where disabilities and illness is irradiated! All those suffering become treated with powerful stem cell replacements and able to be employed in any job, no restrictions, no permanently deformed joints or failing organs ,no "limited capacity to work groups" nonsense etc. A world where illness and disability no longer exists and there is no need to fight for equality,a world where tax payers money no longer has to support those not able to work.

 

Charlie's story is particularly close to me not just because I have been an ill child and am a physically disabled woman but because I am a mother. I never thought I could be a parent after having had chemo meds all my life and not grown properly,most of me bionic etc. I am proud to say I am a mother to a healthy two year old who I never take his health for granted. At any moment our children can get seriously ill.I got JIA aged 15 months through chicken pox that sparked my immune system to turn against me, the same happened to Max Cliffords (News of the World editor) daughter, children absolutely healthy can suddenly turn eight and get leukaemia like Garry Liniker's daughter, athletic people in their twenties can drop down with heart failure. Scientists are working on making new organic matter hearts using stem cells,they are building new joints with stem cells so severe physical limitation may be a thing of the past but above all stem cell transplants are giving the dying a chance at living. There are hundreds of thousands of reasons why umbilical cord donation must happen now!

 

Ask yourself, can you so certain that severe illness will not hit your family to not be bothered by this issue? Illness happens to millionaires children and the average Joes parents. What if one day your son needs a bone marrow transplant and sadly there just are not enough donations available to get the right match in time?

For more information about the issues covered in this blog post or to find out more about donation please go to the following links.

Web sites:

http://www.charlieharrisbeard.com/

http://www.nhsbt.nhs.uk/cordblood/

Facebook Pages:

Cords4Life:Charlie's Legacy

Raising awareness of umbilical cord donations.

Anthony Nolan (blood cancer charity).

 

 



Many thanks x

 

 

 

 

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Survival Guide to the Waiting Room!

We both have severe arthritis, I since I was a baby and my husband since his early twenties. We are both requiring extensive surgery and our forms of arthritis are auto immune faulty programming rather than age degeneration. Our immune systems wake up, feel a bit bored and go and munch on a knee sometimes a heart,kidney or spleen. Age related arthritis is a slower process of healthy over use of joints, perhaps through pounding in the gym during your youth has caused wear and tear over several years in a knee or ankle. Age arthritis is predictable, you pretty much know which joint will hurt,for how long and its intensity, auto immune arthritis like to surprise you sometimes daily sometimes hourly but as a parent, whatever your disability or illness throws you have to stick it aside, down some morphine and get on with the duty of giving your child a good childhood and future.

 

Auto immune arthritis is a hefty beast to tame. In actual fact it rarely is tamed but we and our medical teams do our best to make it take annual leave. We can have mini flares in the morning or afternoon where one feels like we have done an extensive pub crawl, headaches, flu and our bodies become as stiff as a stick of rock! I actually have to be manoeuvred, like a lump of steel, out of bed by my husband in the morning as I do not bend in the middle, meanwhile my husband also does not bend in the middle but has long arms to haul me with,occasionally my assistant dog is called on to help, I feel like the enormous turnip! It is amusing game of statues getting dressed for the day in our bedroom at 6am! My best party game was always musical statues, I always won it as a child, I can understand now why!

 

We both have a nuclear war drawer of medication of stashed away meds for a rainy day! We have at least sixteen boxes of Tramadol between us, eight boxes of two different kinds of oral steroids, Prednisolone and Deflazacourt, umpteen packets of codeine phosphate and its accompanying friend Ducolax! Somewhere also lurks Trimethroprin as my arthritis has attacked my kidneys since I was aged six, Omeprazole for the anti inflammatory ,Indomethacin, that occasionally eats my stomach lining. Amoxocillin is there too because my husband and I both take anti tnf and as soon as our son gets a sniffle my husband gets a full blown hospitalising chest infection. We also all have surgical masks to wear all day when someone in our household is ill! Three bottles of Calpol, a box of teething granules,several hand,neck,ankle and knee splints that I should wear but don't because they are impractical with a child who wants to paint, needs a nappy changed or wants to squash blue play doh into the interesting looking plastic pattern of a gauntlet.If there is ever a nuclear war we have the best Pharmacist right at home!

My drug drawer!

 

On a serious note we stock up all these medications because frankly going out regularly to a chemist to get yet another prescription is a huge military exercise for my family. I am the only driver in the household as my husbands bones in his feet have collapsed which sends his right leg numb. I can only walk a couple of steps so my husband has to come along to push me in my wheelchair as there are rarely blue badge spaces available these days.I have not grown properly due to steroid treatment since 15 months old and am fairy like so I can not drive an electric wheelchair as the size of car that would be required for me to take such a beast and my helper dog and my son,would be huge and I know I would struggle.This means my son also has to come along which means balancing him on my lap and my poor husband with his awful shoulders pushing us both! My husband is looking like Popeye these days. Having lots of medication in means far less of this hassle,planning ahead for busy festive times means even less hassle, no one with arthritis should be venturing out in ice and snow.

 

Hospital appointments are a saga! Having grown up with hospital visits and long stays as an in patient I am the Survival guide to the waiting room.We keep a bag packed with toddler and adult items for such trips, many of my appointments are miles away at out of county specialist centres so if a bag is packed in the evening it is one less thing to do in the general caous of getting every one ready to go out. The bag contains:

3 Nappies

3 nappy bags

1 small packet of travel wipes as we have to keep the bag as light as possible for us.

1 charged Kindle Fire HD with "Not Now Bernard" book (sons favourite) on it along with some Nick Sharatt favourite stories. Some toddler games- "Duck Duck Moose" make some fantastic toddler apps for apple and android. To entertain mummy and daddy we have Chicken Ninja (only on android) and Temple Run app on apple and android, don't knock it till you have tried it people! I can not stress enough how important these gadgets are to a disabled parent that has regular hospital appointments in his or her life or indeed for a disabled child. To have an entertainment system that sits in a small changing bag is a godsend! When I was a child my mother had to lug in a small suitcase of books and toys to look at whilst we waited to see doctors, occupational therapists, leg brace guy, some bloke who tried to get mum to accept I needed a wheelchair where she politely told him his advice was potentially damaging to children with juvenile arthritis and we marched rather quickly out again at a rate my legs were struggling to keep up but it was exercise!

1 Pepper Pig colouring kit from The Range, a perfect pocket sized colouring book with small crayons.

1 blank note pad for free drawing for my son

1 small blanket to lay out on the car back seat to make an easy height changing table for me and husband to change son in.

1 sippy cup, a basics one from Sainsburys as I can rip the lid of using my mouth, tommie tippie is great when they are learning to use a sippy cup but good luck trying to get the lid unscrewed of those, I just couldn't with my child size, poor grip and dexterity hands. So I preferred to use the basics cup and just sit with my son and teach him how to use it, explaining that shaking it around was not a sensible idea. Heck if the 1970s had these basic cups and managed why can't we!?!

1 fruit shoot, yes we know sugary drinks are naughty but they are accessible. You can pull the lid off the bottle with teeth, pull the sports cap up with teeth and placing the bottle on lap,better still a table or chair arm,and zippy cup underneath bottle cap you can push with elbow on the bottle and juice will flow into the cup, I know you could take the whole top off but my hands can not do this. Another alternative is to fill up a basics zippy cup with water or juice at home and carry it in your cup holder in your car.

3 Humzingers- soft sticks of awesomeness, all made of pure fruit so we are not giving him rubbish but the wrappers are tricky to open with poor dexterity so don't forget some scissors in the bag too.

1 packet of tuc cheese biscuits

2 packets of Organics carrot stick crisps.

1 banana

It is a hospital visit, we don't try and stick with healthy eating on these rubbish days, if my son won't eat lettuce sandwiches at home he will kick up a fuss in a waiting room full of people.

1 Bumble bee back pack and harness system so my son can walk if needed but be kept safe! Only used in a waiting room in moments of desperation.

That list all sounds similar to The Hungary Catterpillar- effectively toddlers are like this! They need a lot of everything. Don't over load the bag because if you have to lug it around or hold on the back of a buggy or wheelchair and orchestrate a child safely around the premises you need to have every last bit of your physical capacity available.

Do not take toys, other patients are in pain and do not need a child zooming around their feet.If like me you can not bend down to pick a child up from the floor then don't have things that encourage them to be on the floor.

Hospitals are new for little children to explore, it is vital we get seated quickly with entertainment and snacks quickly offered, if I was two I am sure I would find a nurse buzzer exciting and an old ladies tapestry bag fascinating.

Today is another hospital visit to see my rheumatologist. Since having Christopher some of my joints need a lot of attention and I seem to be in a flare. However with a child all these things pale into insignificance, just a daily chore that one has to adapt to and work around, we have no choice. Parents with disabilities have to go out shopping as soon as milk or nappies run low, it doesn't matter how ill we feel! If the blue badge spaces are taken up, we just have to go and face the consequences on our joints later. If we wake up feeling awful it doesn't matter, there is a small person needing you and who didn't ask to be born so should never have to suffer just because you are, however ill we are, whatever is going on we have to get up, do painting with them which takes ten minuets to set up and an hour to clean up,read countless books,sing many songs with loads of actions to the lyrics.

 

I want normality for my family, myself but most of all my child. I need help, I accept that, I am seeking direct payments to become an employer and choose the care I need but this will be a slow process in terms of being awarded them in this financially strapped climate.

 

Disabled parents, where there is a will there is always a way. So many of us never thought we would ever be well enough, able enough to have a baby, yet here we are! Hospital appointments become a breeze but always have a bag packed the night before because if you are anything like us it takes us an hour to dress ourselves, husband helps me but it takes him a good forty minuets to get himself ready to help. It then takes another thirty minuets to get your child changed and dressed and the NHS have a habit of making hospital appointments for severely disabled people at 8am in the morning for out of county appointments, ahhhh British infrastructure, there to give us a challenge which we all rise to regularly!

 

On a last note, we brought a deal from Groupon for three Mess around sessions for our little man.I will let parents know how it went but it promises every thing I want, my little chap having physical play and a messy happy time with compost,water,sand and goo, above all he will be with others his age and there will be no setting up and more to the point cleaning up these activities at home,happy days! Take a look at Mess around site for more information:

www.mess-around.co.uk/

 

www.mess-around.co.uk/

Keep strong, keep being brilliant, keep laughing with your little ones x

 

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All parents have it tough in 2013!

How much time should one spend with your child?

This is a question we have been asking for months now and the following article sparked us into thinking again:

http://www.bbc.co.uk/news/education-21895704


We don't want to be helicopter parents because I know independent play is vital to a child's development. Equally leaving him for too long is wrong,modern society puts way too much pressure on modern parents! My mother used to give us an hour in the morning and two in the afternoon, the rest of the time we played on our own, this was just how life ran, no Cebeebies,Nickelodeon ,just toys to entertain us.

I then started to consider what a modern parent was in the UK in 2013.Womens roles have vastly changed since the fifties and sixties. Women now are all things to all people, we are expected to be bread winners, primary care givers, the maker of lunch boxes,the entertainer, the school and play co ordinator, the educator to our child,the dutiful wife, the caring wife who nods ones head in sympathy to various household members and friends woes whilst juggling shopping lists and diaries of appointments. Men ,meanwhile ,do not know what their role is anymore,women have taken it all on and expected to do so by our bra burning predecessors! Men feel de-masculinated, modern women expect men to do things that frankly they struggle with and which they would not have been expected to do when a woman stayed at home. Men entertaining a toddler is not always the easiest combination,men doing grocery shopping come back with an arm full of beef jerky and cakes rather than milk and nappies. Modern weekends appear to comprise of household arguments ,world over,all available to view on Facebook!Status updates of "feeling exasperated" from both men and women.



What happened to it being ok for mothers to stay at home !?! The sixties generation happened, a movement of women thinking the grass would be greener if they could be out the home and working,sit coms like "Butterflies" showing a bored and frustrated housewife (see the show below) reflecting the new mood.The same generation of women who had no idea what pressures their actions and protests were about to invite onto their daughters and sons. The same generation who had time to teach their children to read prior to school and who scoff at their working daughters not able to teach their Pre school child to read, a generation who didn't have to be skint paying out money on nursery care because few children went to nursery.

Unfortunately or fortunately depending on how sucked in by the Tory machine you are, I am rather ill and need a lot of surgery.I am at home with my son and not a day goes by where I do not feel grateful on one hand to have the luxury of time with him yet I also feel hated by other envious,healthy,working women. Although I am not sure any of them would want to have to say goodbye to their child whilst they left for specialist major surgery,located hours away from home and potentially not seeing their child for a month each time.Serious illness, childhood disability has meant this is a lot of my life, I make the most of it when I am home! I make the most of it when I can work, I was always first in the office and being thrown out last, I loved work, the buzz of helping others into employment, listening and supporting the "difficult to reach groups" of disengaged youngsters into training and a positive career. I try hard to not begrudge any one in any situation,work,life,education and parenthood has taught me this lesson.



How much time is too much time with a toddler? It goes on parents instinct. I do not need to read articles written by those who write to condone actions of not being around their child much, who make it easier for two working parents to swallow the tough pill that their child going into nursery every day is a good thing and having to ask their child to get on whilst washing, ironing and shopping is caught up with at weekends is ok too. Modern women and men have no choice but to both work full working hours,this is really sad and I society has failed modern parents and their children. With housing costs sky high no one can afford to not work, dear reader it is a horrendous struggle when one is not working, no one should feel bad but equally don't turn grief of personal situation into envy towards parents who can not work unless you have actual knowledge of their difficulties. I often wonder if workers feel that if they didn't have to be employed they could live it up? Perhaps they think they could go to the spa,the gym, engage in retail therapy,learn a new hobby. they could have hundreds of activities planned a day for their child, they would feel looked after and be looking after, life would he sweet. This view is misguided, in todays society you are likely to not be working if you are redundant,very ill or very disabled. If ill and disabled you have to leave your child for months whilst having major surgery, you have to drag your child and husband to hospital appointments every week, you have a far smaller amount of money than those who are on basic minimal wage and hence the nice side of life does not exist. Money is used to keep a roof over your head,pay bills and eat, which is fair, we are not working and money should be tighter but there are no trips to the spa!



I have felt so angry during spells of working,having jammed in umpteen morphine liquid cups to get through a busy day, sat in meetings feeling flu like then coming home going straight to bed,switching on the news to find people claiming Disability benefits who are dancing on tables, playing golf or rugby! These people are rare in the UK though, thank god. Most people with disability are genuine and we can not go anywhere because one is so physically disabled and one needs a lot of help to get out. Therefore it is up to me as a parent to provide a whole day of entertainment at home for my son,day in,day out, with the only reprieve coming from a friend, family member or hospital appointment to get us out. This is the reality experienced by many physically disabled parents in 2013 which is why a healthy parent will rarely see a disabled parent out shopping, you will hardly think about disabled parents and their children as a group because you won't come across us at baby and parent groups either. Disabled children have become the new buzz word to inclusion, if a child in a chair wants to rock climb there is a resource for that but able bodied children to disabled parents are a forgotten group.



Then there are those with disabilities that are not obvious. Disabilities such as cancer, mental health difficulties which actually I think are the worst kind of disability. People in the UK still have some understanding of a struggle that physical disability must be especially for a parent but for mentally ill people, they feel even more isolated,hated and misunderstood. They have no useful visual aid, no wonky body, no sticks, no assistant dog just a terribly sad time going on for them, perhaps in the form of clinical depression, Post Natal depression, perhaps OCD etc. I can not imagine how it must feel in this political climate to have a mental illness, at least I can think "meh you berks" but people who already feel frightened and judged are now actually being judged by a hostile UK. Their children will be as left out as those children with physically disabled parents. Who wants to go ,feeling absolutely rotten about themselves, to a group where normality is expected?



Modern world of parenthood, in the UK ,is a tough world. There is no group who has it easier, well unless you are Mrs Glaxo Kline Smith, maybe she does quite well,equally maybe she is sick of Mr Smith coming home and moaning about the new NICE drug laws when she has had a dispiriting day of her washing machine giving up mid cycle,their child has drawn on the walls with crayons again, who knows! We all have our own struggles however they look to the observer. I still put single parents on a pedestal, I do not know how you guys do it and as for a disabled single parent.....wow.... they are the X Men of parenthood! Rather than hitting out at one another maybe we can listen and learn and take what inspires us from different parents and apply it to our lives. All parents are doing their best in these hard times and although parenting is exhausting and often intense it is also the best thing in life, the happiest and the luckiest thing to happen to us :) x



I shall go now and play bathing toys, a task I can do easily sat at the table with a plastic ice cream tub of water, bubbles , lots of toys and one happy child. Followed by playing bubbles in our dining room whilst my assistant dog and he run around popping the bubbles, all can be done sat in a wheelchair or chair and all entails laughter and fun especially watching the dogs face as she eats the bubbles! Then I shall read to my son, my husband will come and cook a meal for us and then we will all eat, child will sleep and it will all start again in the afternoon and the next day,the day after that,day after that with hospital appointments making up our time out of the house. My little boy has played on his own for a good hour. Time to be with him now, cuddle him, laugh with him and chat over life, Mr Tumble, 64 Zoo Lane and Peter and Janes "Pat the dog".

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2 year old update.

It has been a while, I must try to be more regular in my blog posts but frankly with a to year old and two parents with physical disabilities time rarely a friend.

 

My son is now two! Lets level here, yes he walks on his own so no more lugging him about the house. However he is still too small to independently climb stairs, he can not climb into his child seat yet and he is of course heavier now and almost my height worryingly! I must invest in platform shoes!

 

Yes he understands the word "no"now so I can control his actions with my voice but in order for toddlers to listen they need not feel got at all the time. I always let small details go, if he sticks his hand in my face cream this is not worth telling him off about, if he comes in with mud everywhere or sticks sticker book stickers on the walls this is a nightmare to clear up, especially in pain but not worth telling him off for. When he is about to start annoying our dog when she is eating then I tell him off, although my dog is a gentle lab she is a dog and it is in their instinct to be possessive over food. If my son is climbing on the sofa he gets told off, he will fall and I can't move quick enough to stop it or pick him up from the floor when he is hurt.

Some aspects have got a lot easier and so much more fun. He can count to eleven, never stops talking, knows his letters and some words. He is perceptive, he brings me things that I drop, he knows I hurt and is so gentle. He is learning French at the moment and his speed at taking in words of objects in two languages is so amazing!

 

Some aspects are harder but no harder than a well parent has it, you can not leave a child for more than a minuet, they are always up to something. The hard part of disability is the energy every small activity takes from going to the loo, dressing and when you have another little person dependent on you to change him, entertain him etc that is draining. Hence the toy shops and libraries get hit more! I am currently on the hunt for an easy to push and steer trike with a handle. It is between these two models, these are available in the UK, just as usual Americans are more ahead at actually road testing these things. Why oh why do we not have a Top Gear type show for baby equipment in the UK!

 

 

 

We also brought little man a sand pit table. These are great as parents are needed to show child how to play with sand initially, the table we have is one for sand and water. My lovely parents, god bless them, brought me a ground level plastic turtle pit, so kind of them but they forget I am not longer that child that could be lifted down onto the ground, I am a full blown woman! I can not sit down on the floor to play in a ground pit. There are some stunning sand tables but be warned, a two year old has the attention span of an ant! Do not go paying out £70 for a stunning sand table if the reality is your child will only ever play with it for a few weeks. I have plans for my sons table to be my potting table when he gets bored of it! However we only spent £25 on it so it doesn't matter if he doesn't give it a load of time.

Retails in Toys R Us for £25

Available at www.wickentoys.co.uk retails on there for £75

 

 

We are struggling for entertainment ideas, our son still enjoys reading, enjoys letter learning time but he won't tolerate endless books all day like he used to so we have to get more creative and except use or little bit of energy entirely on him and the dog in the day, not worrying about anything else. We do various art activities at the table:

 

1.Painting using a kitchen pan sponge and kids paints and a large roll of paper from IKEA spread on the table so no need to worry about table! We also have a plastic table cloth so our son can do his worse and it doesn't matter!

 

2. Mr Maker kits- fantastic things- every thing you need in a mini kit and a make that can be done in a minuet! Great for a two year old attention, with a mother and father with awful hands the make takes ten minuets but we all get there together! Here are some fabulous kits available from John Lewis,Amazon and Hobbycraft.

The alien saucer is a little difficult to do up with poor dexterity!

 

 

We are venturing into the world of direct payments, a sad day for me! I hate needing help from others but I have to start accepting I need help to get out with my son, if I am in charge and effectively an employer I would at least feel I have dignity and choice. I am looking into Play schools as frankly the process of applying for direct payments is slow in the UK! You go through an extensive care needs assessment and then it is put to the finance board etc. Probably by the time they are awarded I will have placed my son in Playschool and he will be getting out enough! Still all avenues need exploring for my sons sakes. A tip for future parents to be, if you think you will need help getting your child out and about then for gods sakes get applying for direct payments now! They take months to approve because understandably the system is in chaos, too many chancers taking money from those of us who really need it, thank god for this new government we have in power sorting the wood from the chaff!

 

Finally since 2009 I have been needing adaptations on my home, when I was working I was climbing upstairs on my hands and knees because no stair lift had been put in, husband with awful shoulders was having to lift me into the bath as we had no walk in shower, as for getting out we have no ramp and I still need lifting out the house! The ramp has been designed at last, its just a case of some random bods discussing monies to instal it! Yes it has taken 4 years to adapt my house! Not great really especially as this has impacted on my child's life. I have to say there are hundreds of difficulties for healthy parents of disabled children but there are services and clubs, help and inclusion available. To the healthy child of two disabled parents there is no help, little inclusion chances and they are left out. Hence I am fighting for change! When I put my mind to changing social policy it usually happens.

 

Sorry it has been a while, we really have a lot of surgery on our plate,strong medication, trying to juggle happy normality for our son, we don't want him knowing about our illnesses much, he doesn't need to live our difficulties. He is well, I want him to make everything of his health, he has endless chances, choice and I will do everything to make sure he accesses it!

 

Will be back soon x

 

 

 

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The things I do for treats.

Written for the Pets Win Praises competition with MoneySupermarket.com

Please check out this link

http://www.moneysupermarket.com/c/pet-insurance/pets-win-praises/

 

I am a yellow Labrador assistant dog and have PHd level training from a charity called Canine Partners. I have taken my mistresses blog over for a day to tell you the things I do for treats!

I was trained as a pup at Canine Partners, a charity that trains dogs like to a very high level to help and care for a disabled person, the world class trainers,puppy parents and a whole army of humans goes into making a dog like me pass with a PHd in caring! I had a lovely puppy mistress and master where they would show me as a young pup the human world and told me how to go about being an outstanding doggy.I would be rewarded every time I sat, went to my toilet and only in my toilet area to do my business, behaved well in town and my puppy parents taught me all about small humans in a pack and I loved them! I would get biscuit treats for small tasks as a pup. Eventually my education went on as I grew, I was being taught to unload and load the washing machine, open doors and pick up all kinds of objects from floors and supermarket shelves. Every time I completed each task I would get what Canine Partners call "a jackpot" of treats, as a dog I call it funny humans throwing me tasty bites everywhere, its such fun! I was no longer a pup, I packed my doggy suitcase, sadly said goodbye to my puppy family and told them I would make them proud.

 

I lived at Canine Partners, I loved the trainers but I am a busy dog and when we finished play and training I had to go settle down, I was not amused, all the treats in the world didn't stop me moaning! Eventually CP invited this tiny adult human along to trial us dogs with her and I knew I had found the right human for me, she looked a positive and busy human,her eyes smiled. My human mistress has been ill all her life, she was 15 months old when she got Juvenile arthritis which is nothing like old human arthritis, this is a disease that involves the immune system attacking everything in the body from bones to organs. It can be lethal and works over night eating a knee joint. Mistress tried to live in her own kennel independently but her mum and dad had to come over every day to help,she couldn't pick the mail up from the floor so urgent appointments were going unanswered,she couldn't get up from the floor if she fell over, needed help dressing etc etc. That is where I came in! We trained with Canine Partners together,mistress was taught how to treat me with higher levels of treat if I do something complex and normal treats for smaller tasks which to Mr Average dog would be a huge event! Before I came along mistress was having to call her parents if she dropped her car keys when she was out, even if she was an hour away she had to call because no one would help her get the keys, she lost confidence in going out because of this and if it wasnt for her funny human external pack friends she wouldn't have seen many humans. Now I go out with her and she no longer has to worry and neither do her parents and my tummy doesn't worry because I get lots of treats out and about!

 

I have been with my mistress for 7 years. I have been there at parties,there to clear up after parties.I have been there when she fell in love with master who also has youth arthritis, I was there when he proposed with a sparkly ring that I checked out to make sure it was an adequate purchase by sniffing it! I have been into work with her and met interesting humans all who wanted to stroke me which is a naughty person! I was there at mistress and masters wedding with a purple organza bow around me, I felt smart and enjoyed the treats down the aisle! I was there when they went away one night, unexpectedly, I wondered what the deal was, I worried! My mistress was looking like a fun beach ball and then she went away and had a small human pup with her! I sniffed him to ensure he was part of the pack and he met my high standards of pack membership, he did, he is my best friend! I wag my tail at his puppy antics, I find him so much fun that he now says my commands and I help him open doors which has got us both into trouble, we both sit on the naughty step then! Although he means a lot more work for my pack I wouldn't change him for the world.

Here I am checking out the new pack member and instructing him on my high standards of membership!

 

My work varies, sometimes every thing goes as smooth as a labs coat and other times it doesn't.

 

One of my main jobs that gives me high job satisfaction and lots of Kibble treats is helping mistress get on the floor to play with the small human. Mistress has been unable to get on the floor since she was 4 years old but now I sit right up against her, she puts her arm around my neck and I lower her to the floor slowly. If I jar her one of her joints is likely to break or dislocate so this is a job only for the smartest dogs! I get lots of cuddles and treats, she is thrilled to be able to play on the floor with her son. I am so proud I can help her and small human.

 

Mistress being helped on the floor by me.

 

My next job is smelling small pup boys smelly nappy and going of to get the change bag and bring back to mistress. My nose goes wild and I am glad the frenzy nose calms down once the smell is removed! This is an easy job for me so here I get a base of my tail scratch which I love, food treats are used for complex tasks after all I have to watch my waist line!

 

When mistress is on the floor she can not move so I have to get every thing for her and boy pup. If the phone rings I go and get that and bring it to her, if she has left the remote control on the sofa and needs it I go fetch that for her. I bring books for pup boy for mistress to read, I go off to the shelf and bring back my favourite books which are "Green Eggs and Ham" and "Some dogs do" ! I do get treats for these things but to me they are simple tasks like brushing teeth is to healthy humans so I get huge cuddles and a mini log bone treat.

Here I am getting the remote.

 

 

Small humans nap time comes and we collapse in a heap! I have a walk and then we all zonk out! Mistress has a drink and collapses on the sofa, I feel when she is in pain, I try to help and lick her bad bones but there is not much I can do but be there when she is crying and fed up of having a body that doesn't work well, she tells me she wants the best life for small human pup, I tell her I am here to ensure that happens. She gives me a treat for being with her , I give her a paw and a lick and a cuddle ,we fall asleep.

 

In the afternoon it is more of the same, I will load up the washing machine and get treats. I will get mistress back on the floor to be with her son. They will get every toy out which I put away in the drawers at the end of the day, small pup boy watches me and I am slowly training him now to tidy up after himself, not sure what treat small humans like so just give him a lick.

 

I love treats, gosh I am a lab, paws up any lab that doesnt love a bit of cheese or crunchy kibble!?? I love my bond with my pack more, I am proud of mistress and master, of my friend the small human and of me. Life is great for my pack, we make it great together no matter how hard things get for mistress and master who are both currently on chemo and strong pain killers. To my puppy parents, I told you I would make you proud and change someone's life for the better, mistress has been through a lot and I have been there lending a paw and am excited about the future fun we will all have. I am off for my evening walk now, cats are great news for me because I do get a treat if I ignore one which I always do because a treat is far more entertaining than a boring old cat. It has been nice talking to you all and Merry Christmas x

 

My lovely pack having fun!

 

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