Paralympic games, disabled people rejoice,our time to shine!

"Let the games begin!".

 

I am so proud to be a disabled person in the UK as of this evening! London and Bath University have excelled themselves for creating physically disabled friendly ,utopia ,athletic villages.London transport departments have tried their best with city transport provision for the wheelchair bound fellows amongst us getting to and from the stadium.If you want to go anywhere else in the UK good luck because the rest of our transport sucks!

 

For the last two years ,in the UK, a disabled person,whether with mental illness or physical difficulties, have felt like a Jew in Nazi Germany. The rise of poorly researched anti disabled journalism has made many genuinely disabled people feel victimised,classed as Scroungers, not crippled enough to warrant help, too crippled to be shown in public, all cheating the tax payer whether they work or not, if you are disabled then you should be a vegetable in a wheelchair, dribbling and unable to speak, stuck in a special institution. If you smile, put on make up, look pretty,can articulate , persevere through life with as few crutches or aids as possible then you do not match the stereotyped view of a genuine disabled person and therefore some simple public fellows feel you are faking it. The Sun, and the god awful BBC Saints and Scroungers programme to name but a few examples of horrendous journalism,have given rise to this new culture of hatred towards anyone who is "different". However the tide is turning,mainly due to the Paralympics, whilst an international audience watch the UK, the UK has had to pull itself together, journalists anxious to not miss a trick for profits are suddenly holding disabled people up as heroes, or as the BBC like to patronisingly call us "the disabled saints"!

 

My pride overflows for all of our UK athletes, able bodied or not, the work they put into being the best is just outstanding and puts joe blogs who moans about his work, in the NHS, bank etc to total shame! These guys get up at 4am and train till 7am ,go about their day, then get back to training from 6pm and do not stop till 9pm! Add a physical disability to that, pain requiring huge morphine doses just to train that day, a struggle to time manage it all especially as some daily living tasks, that take a well person five minuets to do ,takes a physically disabled person twice that amount if not four times. Our Para athletes are indeed an inspiration to all, not just to other disabled people. However are they heros?

 

No, there is no disabled person who is a hero, anyone who wakes up tomorrow having had a stroke, shooting pains in every limb, collapses to the floor as they can not feel their legs, these are things that happen suddenly to healthy people, over night, no warning, many illnesses and disabilities just arrive at your door! My husband knows of a once very healthy friend, massively sporty, adventurous, who didn't realise he carried a silent bacteria around his spinal fluid, one day this man bent over to pick something up and bang, collapsed, is now paralysed thanks to this bug just hitting in his spinal cord! These newly effected people have a choice to make, accept they will never be pain free or able to walk unaided or normally ever again, quit life,never see or do anything or effect anyone's life for the better ever again. The alternative is to choose to live as full a life as possible, find a different way of doing something,adapt to your painful body, persevere through some of the pain and try your hardest.

Every one on this planet already does their best but as a disabled person you need to be dedicated to trying, you can not afford to have days of quitting or basically you end up in a very deep spiral of depression and end up giving up.

Day in,day out, the athletes that live with creaky,damaged,bendy or numb bodies live with determination to get on every day and not just in the public arena of the 2012 games. Ahhhh I feel the pride in me now.

 

There are always able bodied and disabled people who moan, feel entitled to more and more, feel that they have no need to try for themselves and yet expect every one else to give their all to them.Well all I can say is I hope the games will help them realise there is another way.

The Para games will be redefining the public opinion of a disabled person so lets join our athletes and support this! Disabled parents, we are like the Para athletes in so many ways, heck just by having a baby redefines family opinion let alone public opinion of me, me who has been on chemo, me who had had operations every year of my life since I was eight years old, me who walks funnily and slowly, gets stared at by adults and kids. I know there are thousands of others out there like me, I am not novel nor am I a person to put on a pedestal, I made my choice, I pursue it, I get on with it and I am a Paramummy!

DisABLEd Positive Parent Icon by Mark Jephcott

 

 



Paramummies weight lift- lugging a baby around with useless arms or using our whole bodies to lift our child requires dedication, practice, early morning training and late night training. Buggy lifting, washing lifting.

 

Para mummies constantly move no matter what the injury- we all probably cover miles in our house through out a day whether in a wheelchair or on foot, or crawling just to keep check on the little one!

Did I mention my assistant dog who is a mega weight lifter as she helps me on and off the floor! Go go Para dog aka "Canine Partners" dog

 

Para mummies race against time- changing a nappy takes us three times as long as an able bodied person due to limb restriction, having to use our mouths to undo and do up nappies etc so the pressure is on when the child is an impatient toddler and believe you me toddlers are tough trainers! You feel like you have won gold if you manage to change a nappy in under ten mins, child looks almost shocked at your great time!

 

Para mummies keep motivated- no time to get down, mope about pain, mope about what others can do and we can't, we just have to persevere with our weird but effective ways of parenting.

 

Para mummies are gymnasts! That's right, you try standing on one muscle wasted leg,bad leg out behind you, leaning on one arm that is deformed, whilst changing a nappy with one hand, that is Yoga baby!

 

Para mummies are strong- we are human, we have days where we feel we could have been better parents, that we could have handled food being thrown around a room with more dignity, we would love to go to able bodied parent and child groups and sit on a floor with everyone, then we feel sorry for our little ones for not having the healthiest mummy who can not take a toddler out regularly. We feel emotional, disappointed in ourselves but IT LASTS FOR HALF AN HOUR NOT A WHOLE DAY! We find what we are good at, reading to our child,painting with our child and we think actually we give great quality time,may not be action packed, may not be quickly done but we are doing our best and keep doing it!

 

So here is to the lovely public, the differently able athletes on stage tonight and over the next few weeks and to all other disabled people who are great Psychologists, lawyers, geneticists, artists,engineers,parents,teachers etc all who do their best, strive to be the best at what they do and genuinely are a positive thing in the great UK.

A brilliant piece drawn my my husband who has severe arthritis in his hands but he keeps on drawing, now that is passion for his art for you! By Mark Jephcott

To all disabled parents lets remember we are "Para parents",lets not feel ashamed of who we are but take inspiration to keep going from the 2012 Paralympic games and our fabulous para athletes :) x

 

 

 

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My proudest moment as a mother.

My son aged nineteen months, almost twenty, walked his first four steps unaided yesterday! This has to be my proudest moment not only as a mummy but also as an individual.

 

Surely my most proud moment was when my son was born you would have thought?!?

 

As a child growing up with juvenile arthritis you learn lots about medics, hospitals, treatment. You grow up quickly ,making important choices from the age of five about how much medication I felt would be necessary for the day, evaluating the day ahead, predicting what teachers and pupils would ask of me and how much medication that would require without making me sleepy etc. You learn nurses and doctors can make mistakes eg.when the drug trolley came round, I was given the girls tablets who was in the bed opposite me, I had to argue with the nurse as a nine year old on my own for ten minuets! The Sister of the ward confirmed the nurses error! God knows if the girl opposite me had taken my drugs or not,I am not sure her parents had taught her to make choices for herself ! Another occasion was where the registrar miss wrote a prescription for me, instead of 4 mg of methotrexate a day he put me on 40mg and as methotrexate (a chemo drug) was new and under trial the consultant almost passed out at what had happened, fortunately for her and me I had been hiding methotrexate in my PJ case for three months as the two doses I took made me vomit a lot and I had had enough!

 

Now you will understand when I say that when I was pregnant, scans were not emotional, they were for studying measurements of my son on screen after I had checked I had seen a healthy heart beat. I wasn't looking at my child but checking the scan was done well and my questions answered.One doctor said I could take Tramadol and they would sort the withdrawal effects in my son when he was born, I thought why on earth would I take Tramadol for my selfish pain relief that ultimately could make life tricky for my son in his first few days on earth! Pregnancy was rubbish for me in terms of excitement and romanticism,it was an amalgamation of people who were not sure what to do with me,what to say to two disabled parents, if I would miscarry, how to help my family etc.

 

Birth was sensible. The doctors realised my s shape spine could not take an epidural and my deformed pelvis could not deal with natural birth so I had a general anaesthetic and a c section. I went to sleep,woke up and there was my baby! I cried with joy seeing him but there ends my experience of pregnancy and birth!

 

Even with our son safely with my husband and I, the anxiety of our child's health was still foremost in my mind. Had any of my drugs effected him? Would immunisation do what it did to me ,to him? If I gave him the MMR would that trigger his immune system to attack like it did in me? I had my son, loved him but I had to be in medical mode for the good of my child.

 

So although little man says a hundred words and can count to ten etc my worry of him not walking was getting intense. I was concerned there was something medically up.

 

So over the last two weeks, with the odd hour from mum every now and them, we would all make Christopher stand up! We turned it into a fun game of stand up ,clap hands ,shout yeay! Christopher enjoyed this and every day for two weeks we have played it and over the last few days I have heard him in his room going yeay and found him standing up. Yesterday at 5.45pm our little man picked those tiny feet up and stumbled four steps across the room! At last I could relax, knowing he is ok, he is better than ok, he is great! He is kind, thoughtful, calm, sensitive, happy and finally I can (in almost certainty) say he is a healthy little boy too.

 

Yes this was my proudest moment as a mummy.I am determined he will have a childhood and adulthood full of happiness, love, friends and opportunity, he has, touch wood, nothing to stop him achieve any thing he wants in life :)

 

Little bit wobbly but my son is standing quite a lot on his own with no support and even took a few steps yesterday!

X

 

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You snooze,you lose!

This is our sons motto at the moment, this is not making for an easy day for two parents with auto immune illnesses in full blown flare. When we flare we literally feel like someone feels with severe flu, perpetually tired, hot then cold, aching every where, there are places aching I have no appreciation of existing until flare ups happen.Our joints go into pause mode, they actually forget to work and in my case my kidneys decide to slow down as well and I get a blusher mark just below my eyes so I look like I have overdone blusher!

August is Stills Awareness month (also known as Juvenile systemic arthritis and nooooo it is nothing like old person arthritis pls watch clip).

 

Still life goes on, as any parent will say "you can not afford to be ill",it is one of those jobs where you can not tell the boss, aka a 19 month old son, that one is too sick to come into work! It is tough, you have a child and there is no option but to get up every day and get at it,if it takes you ten minuets to just undo nappy straps to put a nappy on your child then that is how it has to be. A baby does not have the cognitive ability to have sympathy for your plight and as a toddler they don't see the dark circles and pained faces, to them you are fun time mummy and daddy whatever the day, whatever the time and whatever the situation.

 

So today Daddy is on entertainment mode, playing his Ukelele, am going to start calling him Gabriella the frog from Bagpuss, he has been on the Uke all day playing songs from Pink Floyd to The laughing Policeman. Meanwhile the not very at tentative audience invests in some good old fashioned wrecking the joint with toys, looking under the sofa and pushing car keys right under it (the keys will stay there until we can get our steroids high enough to touch our flare ups in order to shift the sofa), posting things in the dogs mouth who spends the day running backwards and forwards with items from son to me, even if am on the loo, my dog opens the door bold as you like and dumps given items on to my lap, I feel I need to suggest to her she stops entertaining this game! The digi box for the TV has had various buttons pressed on it and there are a pile of bricks in Daddy's walking shoe! Hehehehe ahhh the madness, as someone posted on Facebook recently "Having a toddler is a bit like putting a blender on and forgetting the lid"!

The above clip is a childhood loved programme in the UK called "Bagpuss".

 

Not every day is about difference and disability or being inventive with caring for a child etc. Most days are just about getting on with the day, laughing with our son, sometimes laughing at him as he pours yogurt over himself, that's right we are teaching him to feed on his own now too to add to the mayhem ,but then again, on days like these our son can at least hold the spoon which our hands seem to be unwilling to entertain on flare days!

 

Some days are spent trying to co ordinate grocery delivery and perpetual frustration at there never being enough bread or milk in the house! On occasion my annoyance at the over flowing amount of baby vests we have collected, half of which we can not work due to stiff poppers, half that should have been binned as you can almost see through them,makes itself known to the household! Most days are about building blocks, playing playdoh, reading to son, teaching him to read, playing games. On top of aspiring to be über great parents like every other parent in the world, we also try to make time for us as a couple, that is if we don't fall asleep with one another on the sofa at the end of the day which is often the case. Still at least we know we work together for the good of our child and one another,we are strong together as a couple,we have to be as we both have an awful lot to go through both in the present and future and our son needs to learn through us that it is all ok, that he has nothing to worry about. Mark and I share the same values and core constructs both as parents and as individuals. We all do our best for one another,even our son tries by bringing hefty books to me on our bed whilst my leg has to be held up most of the day.We still have something to give to friends who are about to arrive any second.

 

Mr No snooze is gearing up for maximum audience participation to the trashing the room project!

 

Life as a parent, wouldn't change it for the world! :D

 

 

 

 

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Yet more useful baby products on high street for disabled parents!

Wow, what has happened to the baby market suddenly, it has drastically gone from being rubbish for parents with physical difficulties to suddenly an explosion of amazing accessible products to help you independently care for baby! With the rise of grandparents now acting as day care for their children's children, it is about time if not for us creaky parents but for the creaky grandparents too!



Below are yet more excellent gizmos available in our shops , online and in store and it is up to individulas to decide what out of the fantastic amount of helpful gadgets might be relevant to their needs. Click on the images and you will be taken to the relevant web site.

Cots from Jojo Maman Bebe:

Cocoonababy

Look for first few months a cot with no ridiculous sides for those with poor reach etc! You will need to think where you put it,, if I was using one I would have placed it on our sons bed with a bed gaurd on bed that I could sit on bed and bottom shuffle to this nest and get baby up for feed, read on bed, cuddle etc. That is only my opinion and not recommended by Jojo Maman, but needs must as a disabled parent.

A brilliant and almost total requirement cot for disabled parents who don't want to get anyone in to adapt a normal cot or can't afford an all singing specialist disabled parent cot, Easy access to baby from your bed, no real reach issues and I could only breast feed on our bed so this is just an ideal set up from Jojo Mamam but also available in other good baby stores online and on high street.

Both items are expensive but this is a genuine disabled parent physical need and hence is why many of us have DLA. If you are going to be a parent, get saving for a cot now because the likelyhood will be the cheapest cot in the high street just will not be accessible to you.

Teaching your baby to walk as a physically disabled parent:

Wow, of course showed my mum this who spent the best part of an afternoon busting her back to try and help our son get walking, meanwhile I was at a Dr appointment reading a parent magazine with this gadget:

Walking wings harness from Jojo Mamam

For those with painful hands would recommend putting forearms through straps as spreads weight more evenly, we can't afford to all be running to have wrist replacements or surgery once little ones walk!

Casemere toddler walking harness. A cheaper option to the above but you do still have to bend which may totally defeat the point of a gadget to help you assist your child in walking. From Amazon uk.

Potty training a toddler when lifting and bending is tricky for the parent.

Potty training is a challenge for every parent and child. Patience and kindness and perseverance is the key but it is no doubt going to be an arduous task for my husband and I who have every bone in our body working against us. Still we will meet the challenge just as every other parent has to. Here are some pots that look up to the job of meeting a few of the parents physical needs as well as the child's.

Über cool design, potty that is sat on top of a stool so when little one gets older can throw out the potty and use the lightweight stool to help them get up to the big toilet. Also makes the potty high enough for ease of lifting toddler on and off without dislocating a hip joint or slipping a disc in spine. From Jojo Mamam bebe.

I may not even bother with the potty bit and go straight to toilet is my son is not scared. This seat clips easily over toilet seat. Making the whole toilet experience feel more safe and secure for child. From Amazon uk

Bathing baby, yet more ideas:

I know looks mad but because is inflatable it means the sides are more squashy which makes it easier to push down on and access baby a little more ease, certainly if parent has poor reach is definitely worth a try. From Bambino direct.

Guether Aqualino bath and changing combo unit. A good low height for those parents in wheelchairs or shorter stature. From Amazon uk.

From Asda direct, deluxe baby bath seat supports baby in adult bath leaving your hands free to wash baby. An item for those who can bend down and reach in adult bath.

Summer infant mini bathtub. Can be used as a bath as really babies of an age where they eat, sleep and poo are not doing enough to warrant a full submersion! This allows you to take a jug of warm water, pour on baby and water will sit at base of this product. If you put this product on top of slatted bath board as shown in previous posts you have baby at good height, make sure all baby products very close by, we can get a full size baby bath and our sons products all on the bath board. This product will hold baby whilst you use both hands to wash. From Amazon uk.

For me bathing baby is absolutely a must do with two people. The reality of the situation is I am just not able bodied enough to do on my own safely. Either my partner, a grandparent or friend has to be with me. Never leave baby unattended. It is often easier to have a towel and changing mat in the bathroom so you do not need to carry slippy baby too far. Get a sturdy camping table (Go outdoors is a good camping shop), put industrial strength strips of Velcro all over table and Velcro on underside of changing mat to ensure changing mat stays on table whilst lowering your child onto it. Have a snug towel over the mat to simply wrap your child up in and dry!

Camping table with adjustable legs, folds flat when not needed. Made by Hi Gear and sold at "Go Outdoors" online uk site.

Another Hi Gear table sold by Go Outdoors online store. Looks more sturdy but legs non adjustable but good height me who stands at four foot ten.

IF YOU HAVE POOR GRIP DO NOT USE MOUISTURISERS OR MOUSTURISING BABY WASH ON BABY OR YOURSELF BEFORE AND AFTER BATHING BABY, THIS IS SIMPLY DANGEROUS! I nearly found this out when trying to lower my child slathered in sun cream from the sofa to the lounge floor, fortunately not a big fall or a hard fall but made me realise that I needed Banana Boat powder lotion sun cream (feels like talc on skin once dried which it does in seconds).

Banana Boat powder dry sun cream from many retailers, I get mine from my worshiped altar of Amazon uk!

Teaching a child to ride a bike.

Gosh where has Jojo Mamam been all my parenting life, no am not endorsing every item they sell but I initially disregarded them as another baby and toddler manufacturer of clothes and thought no doubt every thing would be over priced and rubbish, I was so wrong, great clothes, great gadgets and reasonable prices:

Balance Buddy Bike Handle" from Jojo Mamam. Saves you bending, will totally allow my very arthritic husband to help teach our son to ride a bike!

Useful Baby clubs for discounts on above items and more!

KidStart- www.kidstart.co.uk

How it works:



Basically you go to individual online stores such as Jojo Mamam through KidStart site and will get an automatic discount at check out. There are over 450 stores on the KidStart site.



You also will be issued a card which you can use in high street stores to get a discount.



This site is a definite must for any parent but given that many disabled parents have to purchase more gadgets for looking after their babies it makes sense to try and get discounts if possible.

Tescos Mother and baby club. http://www.tesco.com/babyclub/

Tescos have mother and baby store events and will send you a booklet of all offers at the time along with lots of vouchers for money off baby goods. There is an event on from the 29th of Aug 2012 in Tescos and I have just received a load of great vouchers for it. From Nivea Q10 firming cream for us mums to reduced price premium nappies and vouchers of baby wash goods, snacks etc. Join now to get best value out of the scheme.

ASDA baby club.http://your.asda.com/baby-club/

Works in the same way as Tescos, they will throw a mother and baby event every so often where you can pick up cheaper nappies, vouchers off for baby goods, reduced prices of baby clothes and baby gadgets. The supermarkets are usualy in huge competition with one another so more often than not the baby events will be scheduled around similar dates, Asdas summer event is scheduled for the 27th of Aug 2012.

NCT nearly new sales. http://www.nct.org.uk/

The NCT - National Childbirth Trust, is a UK ran charity with an amazing amount of information but of course almost nothing for disabled parents on the site. However they are incredibly keen to help so check out events through the site in your area, contact them, use their help and ask their help, they are bright people chomping at the bit to do what they can.



NCT have nearly new baby clothes and equipment sales in your area, check when the next sale is and where and take a visit. You will find clothes for baby with poppers that have been worked by someone else hence loosening poppers and making them a breeze to do. Latest baby equipment brought by other parents is often sold off here so save some money and check these sales out before paying top prices. Get your midwife to help you get in touch with your local NCT leader at your first appointment and certainly before baby arrives.







I have to say if I was having a baby now never would I have felt there was a better time! The manufacturers for baby gadgets has finally twigged that pointless love hearts and smiley faces in bright colours is all very nice but any parent, fit or otherwise, just wants practicality,functional objects at the lowest prices!



Chin chin lovely parents,parents to be and curious readers x

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A spikey guide to disabled parenting.

Thanks to my husband Mark Jephcott who drew DisABLEd Positive Parent logo

I stand four foot 10 high! I am fragile looking, I have scars on both ankles, two scars on each knee, three scars on my right hip thigh, two on the other thigh, one on my right hand, one on my right elbow, one on my right shoulder! I am a patchwork quilt of excellent surgical needlework and master crafted plastic joints or patched up joints. All because I have had Juvenile arthritis / Stills disease since I was 15 months old.

My silly hand.

My legs.

I have spent large amounts of my time in hospital on chemo type drugs, on steroids since baby hood to date and had quirky medical treatments at times including a mermaid splint to try correct my valgus knees which is literally a plaster binding legs together in a mermaid tail! I have spent a year being home schooled as had to stay in traction flat on my back whilst I waited for ...I don't know what to happen, before they could replace my hip aged 11. I loved mainstream school, friends made me feel normal and still do today, school and learning took my mind off my pain. I loved the whole theme of school, dressing in a uniform that every one else had to wear so I didn't stand out, my mum put Velcro on my shirt buttons but no one could tell. We all had to look the same and I love and enjoy trying to do that today. I wear maxi dresses to cover my deformed joints and spine, I love make up and sometimes even a spot of fake tan. I despise NHS aids and try not to use sticks if possible, my Occupational therapists and Physio therapists despair because I should use sticks but I tend to drive every where, if I can not find a disabled parking spot near the shop then I don't go shopping that day, yes I am that vain ,that if I can not waddle to a shop without sticks then I would rather not be seen! A ridiculous thought my logical side of my mind screams at me but my parents worked hard at me being as normal and looking as normal as possible, shouting at me to exercise every hour on the hour so to be any different is tricky. I should wear splints but being a mum,adorning splints with scratchy Velcro or plastic are ridiculous and more disabling when trying to care for a baby or really when trying to do any thing in life, they even get in the way when trying to get your knickers up and down to go to the loo!

If I wore all of these every day like am supposed to, I would be rendered completely useless! Here is just a few that sit in my drug drawer!

 

Finally I am a disabled parent and I love it, it is better than the day I got my degree, better than the day I experienced walking after years of being wheelchair bound aged 16, as good as the day I got married to my husband who also has youth arthritis but his is called Psoriatic arthritis.

 

Our son is healthy, touch wood, he is not walking yet but can say nearly every word I present him with, he can count up to ten and he understands concepts such as let's put this car in a box.

 

We have struggled with the following parenting tasks:

Bathing baby - lifting baby in and out bath to his room when wet and slippy.

Playing with baby on floor.

Dressing baby as most baby clothing manufactures use dreaded poppers eg baby vests.

Putting baby in first car seat.

Taking baby out off first car seat

Throwing first car seat in skip, that nearly dislocated my husbands shoulders!

Buying new first stage car seat

Struggling to put baby this car seat

Struggling to do roll bar on first car seat

Struggling with fastening harness on first car seat

Deciding first car seat so difficult that not going out too often is for the best!

Getting Maxi Cosi Axis and finally able to go out with baby but struggling with new ness of seat for example belt straps are not easy to pull when seat is new.

Getting buggy light enough to lift

Getting buggy easy enough to fold.

Getting bottles we could hold easily in our hands.

Using a steriliser for the microwave.

Time management when a task that takes a well person one minuet takes us ten!

Us getting time to eat.

Us having energy to stay up in evening to eat.

Getting time to walk the dog

Getting time to drink a hot beverage

Tiredness

Pain

Having surgery and juggling parenting.

 

All the problems above, with the exception of the first stage car seat, have solutions that are simple, cheap or free and on the high street or the click of a mouse button! There are Facebook groups with other disabled parents who are itching to help and support. I will be posting about helpful websites, blogs and groups in the near future.

 

This is why I started this blog, to help give solutions to other creaky, bendy or wobbly parents questions and to let "parents to be" know that it's great news you are expecting your first baby! You can do it without the need of an entourage of carers and collection of NHS aids that will cost you a fortune!

 

I have had an ankle replacement recently.I had to leave my son and husband as my surgery is specialist due to tiny non developed joints and limbs but through our determination to manage I got out of hospital within three days! I am struggling at home, the husband is very busy but we keep smiling and we adore our son who has fun with sticker books on Mummy and Daddy's bed rather than on the floor!

This blog is written for all parents, a place to share experiences and ideas whether physically disabled or not and to help a future generation of parents with disabilities.

If I didnt adopt being open to suggestions then my able bodied friend who might not have been listened to when she told me about the cotton baby grows with a zip aka Zippysuits! I didn't find out about these, she did. If it hadnt been for a friend with EDS I would not have gotten to know this group of great parents with fabulous ideas. It goes to show with a little less moaning behind closed doors, getting our trials and tribulations out there to all, we can all start to help one another learn. Hopefully together in this journey a "Spikey guide to disabled parenting" can be created :)

Having a child is the best thing to happen to any one but having a child when you have a disability is such a miracle and such happiness that all the difficulties seem unimportant and you just get on with parenthood and struggle in your own way like every other parent on this planet.

Me with son, and my "Canine Partner" Yasmin.

 

 

 

 

 

 

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Baby Boys clothing autumn winter 2012

I have a son and whilst the boys section in any shop is often found lurking in the smallest dark corner of a shop compared to rows upon rows of baby girls clothing, there are some lovely easy to dress clothes for boys. In many respects, for some reason, manufacturers have made a lot more accessible clothes for boys where as girls clothes are too busy being busy and have a lot of sneaky poppers hiding amongst the lace!



So it will be a shorter blog than the girls post as there are fewer clothes for boys, I'll start with my chosen staple necessity :

Zip suits:

In winter shops are flooded with fleece zip suits. A zip goes right from top to bottom, be cautious about zips that stop midway, they are quite awkward to get a child in and out of with painful hands.

Zip onesie with zip going top to bottom from Next online available now.

Shops retailing fleece suits are.

Next- Online and usually in store bring out some zip fleece Baby grows in daywear acceptable schemes.

H&M - Do some great zip suits that look good as Daywear, be warned about the half way zip though.

Sainsbury's- Usually have a Cars,Peppa Pig and Thomas suit in their children's nightwear section.

TKMax- A must visit shop for new disabled parents, huge range of zip fleece onesies and easy zip sleep bags.

Very.co.uk - Have lovely zip Fleece walker suits.Pink stars for girls and blue for boys.

Mothercare- Occasionally brings out a sensible fleece onesie but more often than not they are silly and have hoods on with bee anteni etc. They bring them out more for fancy dress! My son lived in a snowman zip suit a lot during Christmas just because it was easy to put on!

Son modelling his Regatta "Fluffy puddle suit" as daywear in winter, from Regatta.

Go Outdoors, camping shops- Regatta do great fleece onesies for daytime use, they have no feet in them though which was useful in very cold days.

Fleece onesie from Regatta at Go Outdoors, in store or online at www.gooutdoors.co.uk

For warmer months- Cotton zip suits:

These are like finding gold dust! They are only available at www.zippysuit.com. I am going to get onto Mothercare about stocking them because it's high time the world of Baby wear got on with making easy clothes like this!

Zippy Suit which comes with matching bandanas. Also available in turquoise stripe. www.zippysuit.com

Trousers:

If you have sore fingers, weak fingers, easily dislocating fingers then go for thin elastic, heaving thick bands of elastic bedded within denim or cord can be painful. I tend to look for jersey material leggings and trousers.

Three pair set from Ladybird at www.very.co.uk, easy to pull on,thin elastic,jersey material.

Part of Mix and Match lovely range from Mothercare online and in store.

Tops-

I look for popper free if possible but if there is one pesky popper at the neck we undo it using teeth or both of us tugging at it and then leave it undone! Envelope neck openings are great, nice wide opening to easily chuck over baby and literally it is as easy as throwing over baby's head! Wool cardigans are good because button holes have good give in them so undoing and doing buttons is a dream, the same applies to jersey materials.

Part of Mix and Match lovely range from Mothercare online and in store.

Amazon baby envelope neck t shirt, great easy dressing item, no poppers and go under any thing!

Easy dress jumper, button holes have give so can undo and open head opening. www.mothercare.com

Recommended buy! Fleece zip through top, easy dressing, easy for baby to lie down in as no hood! From www.mothercare.com

To go with above Mothercare trousers this envelope opening neck top below is great.

Recommended buy! Fleece zip through top, easy dressing, easy for baby to lie down in as no hood! From www.mothercare.com

Sets:

Some of the easiest dressing sets, I look for easy buttons on jersey or wool materials as button holes have give making buttons easier to do and undo. Envelope opening tops,as few sets with popper vests as possible.

Part of Mix and Match lovely range from Mothercare online and in store.

Great buy! www.next.co.uk easy button holes, feet enclosed so no picking up peeled socks from a floor! Found in newborn boys section at Next online.

Great buy! www.next.co.uk easy button holes, feet enclosed so no picking up peeled socks from a floor! Found in newborn boys section at Next online.

So great I am buying this set! Envelope opening t shirt, easy material for undoing buttons from Marks and Spencer's online.

Marks and Spencer's set, RECOMMENDED by me as the tops have no poppers, envelope opening necks so easy to chuck over child's head, elastic jersey bottoms.

Marks and Spencer's set, RECOMMENDED by me as the tops have no poppers, envelope opening necks so easy to chuck over child's head, elastic jersey bottoms.

Cardigans and coats.

Zips and large toggles are the easiest for my husband with poor fine motor movement in hands. When you are quite disabled you are unlikely to be going for long countryside treks in the ice and snow so these tops do not have thermal insides and do not have hoods.

Good outdoor winter layer, zip and toggles make quick easy dressing. www.next.co.uk boys baby wear collection.

Ironically we are disabled people who can't afford heating on all day, if old and a millionaire in UK you still pick up a help with heating cheque from DWP, if chronically ill good luck to you! So our son wears these tops in winter to keep snug, would like to point out we do have heating but have it on in bursts unlike my wealthy pensioner parents who can wander around in their t shirts in winter and book theatre tickets with help with heating cash!!! From www.next.co.uk

Recommended. Easy zip dressing, snug and padded, not a slippy material making it safer for weaker arms to keep hold of baby when lifting into buggy etc. From www.next.co.uk

Vests and under garment clothes:

Mothercare do Velcro vests in their premature clothing range but they go up to new born size :

Ironically we are disabled people who can't afford heating on all day, if old and a millionaire in UK you still pick up a help with heating cheque from DWP, if chronically ill good luck to you! So our son wears these tops in winter to keep snug, would like to point out we do have heating but have it on in bursts unlike my wealthy pensioner parents who can wander around in their t shirts in winter and book theatre tickets with help with heating cash!!! From www.next.co.uk

Velcro vests!! A rarity in the UK to find! Go do them in newborn and smaller sizes. www.mothercare.com

Once past newborn vests and if was cold we used envelope neck long sleeve t shirts.

Envelope neck tops for going under garments in winter. www.mothercare.com

To be honest I want to be just a normal mummy sometimes, especially on special occassions where Sense and practicality go out the window where clothes are concerned! However when our son is in a zip suit we have great comments of how lovely he looks in nice traditional baby wear. There is choice out there in any aspect of parenting for any disability so just enjoy and try for yourself x

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Fell in the bath,slipped on child's tea set!

Quick interlude post to describe the general nuts that is the life of a physically disabled parent! Normal posts will resume later.

 

Our son needed a bath, Husband was on his last legs, so I came into bathroom to assist with little one in his baby bath. We have a set up of a bath board with slats, that sits across our big deep main bath and a baby bath is put on top of the bath board. Husband holds onto baby and bath as his arms are normal length and grown normally, I do the finer motor controls of washing our child as my fingers have a little more dexterity.

Bath slat board from OT across our bath which has thick ledges around it, husband sits on ledge and holds bath and baby in position.

Bath in position for washing our child.

 

After the usual covering mummy and daddy in water and giggling, we had a sparkling clean little man. I can not lift a wet baby out of the bath ever so that is Daddy's job. I then empty the baby bath by twisting bath on board so plug on baby bath is hanging over board and water can drain freely from it into our big bath. I remove toys and let them dry on a corner of the slat bath board. Now all this usually runs smoothly but not today, oh no silly me, not today!!!

Bath twisted round so baby bath plug over bath board, then plug pulled so water drains into bath without having to lift heavy baby bath of water about etc. Usually works very well!

 

I am currently standing on one leg which has wasted muscles and replaced joints, some of which are old and on waiting list for updating next year, using both arms with broken shoulders, absent shoulder blades and one left elbow in dire need of replacing ,supporting almost my entire body weight via gutter crutches, meanwhile my current replaced ankle is suspended in a dead weight moon boot thing, I twisted baby bath, massively wobbling as I did,thinking I can do this! I stupidly removed one crutch and stood there, whole weight on one crutch and one leg, tried to tip rest of water from baby bath which was only an inch and hardly weighty, but like a game of Jenga it was too much for my body and I tipped up head first in adult bath along with the baby bath,snaked my right eye on the baby bath rim!!!! There I remained calm, legs in air, husband in other room said "are you ok?" where I said "bit of a situation here". Like the giant turnip my husband came to drag me out of the bath! Naked child was sat on the floor wondering what the heck mummy was up to and laughing!

 

Bath time seems to always lead to life mischief times!

Fantastic children's book but the culprit for the next round of bath time mayhem!

 

On a separate occasion, recently, my husband held the bath, this time I thought for some unknown reason, I could quickly grab a few things for our son when he got out the bath so as to avoid him being cold. I went to grab a baby vest from his drawer hobbled back to his bed which took five minuets to do. Lay vest and his towel out on his bed which took two minuets, then thought this room is a total tip and tried to tidy up a few books in a very short time which took ten minuets. I forgot how awful the smallest tasks are when you have no means of walking or getting about a room you are currently in ,let alone trying to get to other rooms in the house. There I was hobbling with one book, "Bored Claude" as it happens, an average sized rectangle book with maximum of twelve pages so hardly heavy. However the way I have to hold anything whilst trying to move my gutter crutches, I have to find a corner of the crutches to support either corner of the book so the book was almost a screen in front of my face! Of course the inevitable happened, I put a crutch on a plastic tea set plate on the floor!!! Bang crutch went under me, I reacted instantly ,to save me falling and braking something, by putting weight on new ankle in cast! One very sore ankle and being told that I now have another six weeks non weight bearing! So so so stupid of me! I kicked myself inside, rang up Adult Social Services to try get some carers as a gut reaction of anger that my husband and I are not given any help and seen as life's determined coping happy people! Fortunately for me I was met with usual red tape of separate numbers to call etc and by then husband talked sense into me and said I just had to accept for a while I couldn't do the usual things with my son, it wouldn't last, he knows that and I know it and having the blue rinse brigade carers coming in, taking away our independence on when we want and how we want to do things is no option! Do we really want our child around people who boil a whole bag of fresh pasta thinking that anything in a bag must be a "boil in the bag" item! Yeah we have had others tell us of such stories!

Messy room, book worm can get all his books down now and they do just that, all come down!

 

 

 

Stupid "Bored Claude" a cracking children's book but was looking untidy and got in my way! Stupid plastic duck that I was trying to shake water out off at the same time as emptying baby bath, stupid plastic tea set plate. That day things were put in the toy box, that day my assistant dog was set to work tidying. That day my dog came in to the lounge and rolled on her back,summing up the general exhaustion of the day.

 

 

 

However through all this we never let our son see the struggles, every situation is dealt with in calm tones, fortunately husband and I can still laugh together at the end of another crazy day and we try to make sure the little man goes to bed with a smile on his face. Not always easy when your body is screaming ago y and eyes need sticks to prop them up but I still say being a parent, no matter what our situation, is the happiest thing to happen to me in my life x

 

 

 

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