Well tomorrow my son will be one years old.
All of my life I have studied for my education much of the time in hospital.
I graduated as a Psychologist, I dated when I thought as a child no one would want to date me.
I married my lovely and talented graphic artist husband in 2009.
I got a job somehow working with a 2012 scheme, never thought I would get such a job as that!
Managed to purchase this 1960s home, but my most greatest achievement is my son!
Being an ill parent has come with huge challenges, both my husband and I have youth arthritis which attacks organs as well as joints. However there is not one challenge we have not over come from not being able to do popper clothes and either finding other garments like zip sleepsuits, locating Velcro fastening vests or finding a buggy that is not awful to unfold with very weak hands etc yes ok there are joints that need replacing but we have been great parents, smiling through it and singing, laughing and cuddling and loads of reading to our son.
Still can not find a great solution for a accessible car seat, really don't think one exists! If the release strap belt button isn't difficult, it will come with a carry bar which acts as a roll bar that has stupid buttons either side of the seat to fold bar out of the way to get child in and out! However for the first year of a child's life they are not aware enough to need social groups so we haven't been able to go out much but he is older now and will be trying the maxi axis soon to see if we can access this easier. The axis swivels to face the car door entrance which should make getting our chap in and out easier. I will let you know the realities.
Remap- an organisation that takes shop brought baby equipment and adapts it to be creaky parent, user friendly have been fantastic. Make this your first port of call parents to be.
Sleep zip suits available largely in winter at Sainsburys, Next and lots of other high street stores, are very worth while grabbing for easy day wear, for those with limited hand movement. Also leggings with feet and envelope opening neck tops are also so easy to put on. Trousers with thin elastic tops are good if you have poor grip, dungarees with easy button holes are also easy.
Above all it has been one of the happiest and greatest moments, a child is full of joy, is the most amazing gift anyone can have. Every day there are moments of joy. I am privileged to be a huge part of my sons life. I would go to the ends of the earth for him, I do need an ankle and two knee replacements next year because of the picking my son up and getting on the floor to play with him but I will do it over and over to join him in laughter and learning.
I would say, to any disabled person, you can be an excellent parent, nothing will be a huge problem, there are solutions to every difficulty. Have faith in yourself, you will spend lots of time with your child because you can't chase social groups for the first year, your child will learn to be gentle and patient and probably read War and Peace by the time they start school due to reading being an easy and fun activity to do with your child.
Happy new year to all parents and children.
Thursday, 29 December 2011
Saturday, 17 December 2011
I do not like Green Eggs and ham
.....I do not like them Sam I am !
Ahh good old Dr Suess seems to be getting us through the mornings, our son loves these books.
Our mornings are consisting of a 30 min battle to change son for the day, feed and then play time including reading which I have to admit I love. I enjoy a little cuddle with Christopher and reading a good book to him even if the ending of "Green Eggs and Ham" is now somewhat predictable!
It is getting very cold here in the UK, probably nothing like other places but still it is chilly. So as there is also mega recession going on, most citizens can not afford to have heating on 24 7 and we are of no exception, it makes me smile that just down the road from us live my 60 plus year old, healthy, parents in their big house with their "footballers wives" electronic gates and they enjoy a winter fuel allowance every winter which means they wonder around in Hawaiian shirts with heating and CO2 blasting out of their property! Mean while their arthritic son in law and daughter don't get any such thing and have to cope with heating being on for an hour in the morning and two hours in the evenings.
As a result of having to watch heating and electricity bills we have massively limited tv viewing which is no bad thing for our child any way, we also and more importantly, tried out popper cotton sleepsuits to go under Christopher's zip suits in an attempt to make sure he is as warm as is possible.
Don't bother! If your hands lack in dexterity these cotton popper all in one things are pointless and difficult no matter where you buy them from. The child ends up shivering whilst you are changing a nappy and then trying to do up the 8 poppers is not worth the struggle at all. Instead we have gone to various web sites and High street stores such as M&S and purchased "leggings with feet" in two sizes, 9-12 months and 12-18 months and got some long sleeve vests second hand from ebay as the poppers between the crotch area have been worked by someone else so they are very easy to do up and undo, an envelope long neck t shirt would probably work just as well if poppers are a complete no no. Then we put the zip fleece suit on him, he has a snowman one from Sainsbury's with a brilliant full length zip on it and a Thomas the Tank Engine one from E-bay,don't be tempted to buy zip suits with a zip that only goes half way down as getting a babies legs into these is difficult. I prefer zips that go from top to crotch area.
Apart from that our tree is up, house decorated for Christmas, smelling of Christmas thanks to various scented candles and we are all really excited. The only thing I want to find five mins to do today is to decorate the ginger bread house but that is very much dependent on little man giving me a moment!
Well back to it I go, I expect he is already running the dog over in his walker!
x
Ahh good old Dr Suess seems to be getting us through the mornings, our son loves these books.
Our mornings are consisting of a 30 min battle to change son for the day, feed and then play time including reading which I have to admit I love. I enjoy a little cuddle with Christopher and reading a good book to him even if the ending of "Green Eggs and Ham" is now somewhat predictable!
It is getting very cold here in the UK, probably nothing like other places but still it is chilly. So as there is also mega recession going on, most citizens can not afford to have heating on 24 7 and we are of no exception, it makes me smile that just down the road from us live my 60 plus year old, healthy, parents in their big house with their "footballers wives" electronic gates and they enjoy a winter fuel allowance every winter which means they wonder around in Hawaiian shirts with heating and CO2 blasting out of their property! Mean while their arthritic son in law and daughter don't get any such thing and have to cope with heating being on for an hour in the morning and two hours in the evenings.
As a result of having to watch heating and electricity bills we have massively limited tv viewing which is no bad thing for our child any way, we also and more importantly, tried out popper cotton sleepsuits to go under Christopher's zip suits in an attempt to make sure he is as warm as is possible.
Don't bother! If your hands lack in dexterity these cotton popper all in one things are pointless and difficult no matter where you buy them from. The child ends up shivering whilst you are changing a nappy and then trying to do up the 8 poppers is not worth the struggle at all. Instead we have gone to various web sites and High street stores such as M&S and purchased "leggings with feet" in two sizes, 9-12 months and 12-18 months and got some long sleeve vests second hand from ebay as the poppers between the crotch area have been worked by someone else so they are very easy to do up and undo, an envelope long neck t shirt would probably work just as well if poppers are a complete no no. Then we put the zip fleece suit on him, he has a snowman one from Sainsbury's with a brilliant full length zip on it and a Thomas the Tank Engine one from E-bay,don't be tempted to buy zip suits with a zip that only goes half way down as getting a babies legs into these is difficult. I prefer zips that go from top to crotch area.
Apart from that our tree is up, house decorated for Christmas, smelling of Christmas thanks to various scented candles and we are all really excited. The only thing I want to find five mins to do today is to decorate the ginger bread house but that is very much dependent on little man giving me a moment!
Well back to it I go, I expect he is already running the dog over in his walker!
x
Monday, 5 December 2011
Parents that hurt, with a busy 11 month old!
It has been a while since I have blogged. Part of having the immune form of arthritis as opposed to the older persons type is you never know what mischief is going to happen whilst you sleep at night. It can be any thing from attacking joints to choosing to muck about with my kidneys. At the moment both is happening to me, what is not yet on the waiting list to be removed,will be at some stage. No idea what to do about the kidney, time for Mr Cranberry juice to make his cameo appearance of the year along with anti biotics.
All that aside life has to go on, as any parent knows, you can not afford to be ill when you have children!
As Christopher, our 11 month old son, has grown up some things have become easier but other things become a nightmare. Be warned parents to be, never think it will be easier when your child can sit up, crawl, it isn't so enjoy the peace of a first born baby because by 5 months things get a little more crazy.
As ill parents, we know we are going to have to enforce a lot more rules on our child than perhaps well parents would need to. We are already having to use stern voices during nappy change time, we are happy nearly all the time so when we use stern sounds he knows we mean business and calms down a bit. If we didn't use this method we would have a child stronger and more flexible than us, rolling off the changing matt, kicking his legs into our joints and there would be general exhaustion in us so we then could not give him nice times as our limited energy would be spent on just the daily maintenance of a child.
Feeding time was getting difficult.We could not have him catapulting food around the room as is his want, as a Psychologist I know there is a need for children to learn about texture of food and play with it a bit but we want him to eat too, plus my assistant dog is getting huge because she is getting all his thrown food to hoover up! We struggled to pull the spoon off him, my hands have not grown any bigger than his hands and my husbands hands don't flex, so this is a major battle. We have to use our voices. We have to be tough and equally distracting. We try to make feeding fun by pretending the spoon is a car, we sing songs and if he still grabs the spoon we say "no" with a big glare on our faces. It makes him upset but he has started to get the message and leaves the spoon alone. Our other tactic is to have finger food on his tray such as bits of toast ,which he controls, and in between him stuffing the bread in his mouth we can sly in some of the good stuff. It seems to work at 11 months, he may cotton on to all these methods soon!
He adores reading time. He seems to be enjoying "Green Eggs and Ham" by Dr Seuss, this seems a bit of an older child book to me but I think babies enjoy rhythm.
He loves songs, he will watch any thing with music in it so he currently watches retro Christmas music videos.His father has recently purchased a Ukulele, so my husband plays and son listens and tries to clap along.
"Baby Einstein" DVDs are a godsend to any creaky parents, it keeps your little darling transfixed for a good half hour whilst you sit down and have a cup of tea and painkillers.
Finally it is the season to be jolly. Our tree will go up soon, we have Chris tingle Church service coming up which I love and I have hand made a lovely Christmas stocking advent calender so when he is older every sock will be filled with a different Christmas related gentle activity, right down to making those gaudy paper chains children love!
The best thing to combat pain is to ignore it, fill your mind with your child, how lucky to have a child and throw yourself into Christmassy feel, fun and online shopping! Tests have proven that you can fool your brain into thinking you are well or in less pain if you stop dwelling on the pain. So off I go to stick Christmas carols on and get wrapping some presents.
x
All that aside life has to go on, as any parent knows, you can not afford to be ill when you have children!
As Christopher, our 11 month old son, has grown up some things have become easier but other things become a nightmare. Be warned parents to be, never think it will be easier when your child can sit up, crawl, it isn't so enjoy the peace of a first born baby because by 5 months things get a little more crazy.
 |
| This is very like my son! From Hasslefreeclipart.com |
Feeding time was getting difficult.We could not have him catapulting food around the room as is his want, as a Psychologist I know there is a need for children to learn about texture of food and play with it a bit but we want him to eat too, plus my assistant dog is getting huge because she is getting all his thrown food to hoover up! We struggled to pull the spoon off him, my hands have not grown any bigger than his hands and my husbands hands don't flex, so this is a major battle. We have to use our voices. We have to be tough and equally distracting. We try to make feeding fun by pretending the spoon is a car, we sing songs and if he still grabs the spoon we say "no" with a big glare on our faces. It makes him upset but he has started to get the message and leaves the spoon alone. Our other tactic is to have finger food on his tray such as bits of toast ,which he controls, and in between him stuffing the bread in his mouth we can sly in some of the good stuff. It seems to work at 11 months, he may cotton on to all these methods soon!
He adores reading time. He seems to be enjoying "Green Eggs and Ham" by Dr Seuss, this seems a bit of an older child book to me but I think babies enjoy rhythm.
He loves songs, he will watch any thing with music in it so he currently watches retro Christmas music videos.His father has recently purchased a Ukulele, so my husband plays and son listens and tries to clap along.
"Baby Einstein" DVDs are a godsend to any creaky parents, it keeps your little darling transfixed for a good half hour whilst you sit down and have a cup of tea and painkillers.
 |
| My husband is an artist so hence why we like this particular dvd!The DVDs are available all over and I am sure competitively priced since thanks to some idiots who threatened court action as the dvds were not making their children smarter, come on people, get some common sense, its tv watching not doing a cryptic crossword! Makes for a blooming good half hour rest though for any parent. |
Finally it is the season to be jolly. Our tree will go up soon, we have Chris tingle Church service coming up which I love and I have hand made a lovely Christmas stocking advent calender so when he is older every sock will be filled with a different Christmas related gentle activity, right down to making those gaudy paper chains children love!
The best thing to combat pain is to ignore it, fill your mind with your child, how lucky to have a child and throw yourself into Christmassy feel, fun and online shopping! Tests have proven that you can fool your brain into thinking you are well or in less pain if you stop dwelling on the pain. So off I go to stick Christmas carols on and get wrapping some presents.
x
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