Beating the buggy.

My son is nearly nine months, really needing to go and stretch his social wings. He is a very smiley, chatty chap but I feel he is perhaps getting very clingy to us and as of yet has not really hung out with children of his age. Being social is really important to me,it is a core construct and I don't really get people who are not social and feel sorrow for those children who are scared in school because they were not given social opportunities. I don't know, maybe I am putting a lot of pressure on myself but for my own piece of mind I have to try and attempt to getting him out and about and limbering up his social muscles. Before I go public my son and I are practicing trying to get him into buggy and then into car seat with both our dignities intact.

I shall also be required to do serious weight training. He is almost as large as my upper body now! Not only that but I have to lug buggies about, not something I am good at what with dodgy arms and dodgy every thing body wise! I nearly threw our first buggy, my husband and I were standing in our close trying to see if I could manage to unfold it on my own and fold it back etc. I could do neither and I hate feeling blooming crippled! Stupid buggy. I slung it aside and counted to ten and said "right its time for that simpleton red buggy to come out!". It is fantastic,where has it been all my life!!!!! It has sat in my sons room,lurking behind his cot and I almost forgot about its existence. My mother brought me two buggies, she said I would have to cope with the first and accept I would need help which really wasn't ideal but the second one, with its lack of singing and dancing go faster stripes, just a simple flick out stroller with a nice easy bar to pop down with my foot and kick back up. What a joy!

Advice with buggies:

Go to the Baby Show ran by Emmas Diary, get there early and try as many out as possible looking at all points listed below.

Or hit your local retailer and be prepared to spend an hour at least!

Here are questions to ask yourself- wish someone had told me these when I was pregnant:

1. Weight of buggy minus a child weight- can you lift it when folded, can you push it around with nothing in it. Wheels that twist are useful as you don't need to haul a buggy 90 degrees each time you go around a corner.

2. Now imagine a big old baby in there! Is it still manageable?

3. Don't be fooled into thinking someone else like a hubby,family or friends will want to come out every where with you to unfold and fold buggy, they won't so can you unfold buggy on your own? Are there buttons or levers on it that are hard to do with your feet, hands etc?

4. Now can you fold the buggy because imagine you have just struggled to get heavy baby out and into difficult car seat, do you have the muscle power left to press more buttons, fiddle about with levers to fold the buggy up and lift it into your car?

5. Harness- can you manage to do it up and undo it, imagine a wiggling baby, pull the harness out as though going around a baby or if in Babies R Us stick a big teddy in buggy and try the harness. I would always say get a harness with a big red button which releases the straps, this is a godsend if like me,you have poor dexterity and week pincer grip.

6. Check break mechanism on buggy is manageable for you.

7. Consider a second hand buggy but you do need to be prepared to go and check it. Go on Freecycle and see what is available in your area. If you explain to the Freecycle client that you need to check the buggy first they would definitely understand. A second hand buggy will have a loosened harness mechanism which will mean less hand power also the folding and unfolding mechanisms will be more worn and hence easier to do! However always check the buggy is in good condition!

8. "The more its got the more there is to go wrong"! In terms of for someone with physical difficulties never has an expression been more true. Seriously!!! I have not yet blogged about the awful car seats available and you will need every ounce of energy for getting baby in and out of that, if you take nothing more from this particular blog then do not get a buggy that has more than 2 levers to un-fold and fold up.You do not want to struggle with any more buttons or levers than 3, as I say I nearly threw our first buggy down our close. 

I rarely let life beat me, I rarely get down and always know there are ways around barriers but there are some high street baby items which have nearly beaten me. I would never and have never got mobility aids if I can avoid it, fortuantely when one has a baby and is creaky,one has to accept you will not be able to delight in plastic mobility aids to help with parenting, you will have to think high street baby equipment and try and make some thing from there work for you!

Mobility aids have yet to catch up with the notion that people with physical problems do actually rock and roll and have children. However we do and boy do I love being a parent. The joy I get every morning when I go into his room and say good morning, the pleasure I get from having him sit with his head resting on me whilst we cuddle and read one of his many books, to the funny face he pulls when eating ice cream. I am so privileged in my life. I never forget that. I have no doubt that I am like any other parent on these feelings :o)

Changing a baby with limited arm movement/strength/pain

Changing.

You will need:

• 1 changing matt or towel 
• 1 bed or cot with good access to mattress area.
• A folded open nappy
• One packet of baby wipes with a zillion removed if it is a poo nappy or one removed if not.
• 1 open carrier bag positioned with large open surface area.
• 1 toy for keeping child still if baby wipe packet not good enough entertainment. 

Placing matt on bed/cot place child on top of matt (lifting your baby will be discussed in my next blog). We only use matt if it is a smelly nappy otherwise we don't  as the matt is more slippery but remember to be quick and a pro if not using a matt, if its a first timer nappy change then put a towel down. Have every thing in the list above, near by before you begin so it is grabbable with hand or your mouth.

Place toy in baby's hand almost immediately before any thing else happens to keep him still and not grabbing all of your needed items!


What to do:

Forearm used to lift child's bottom.

                                                         

• Open nappy on your baby and clean what you can at the front,stick wipe in open bag.

• A smelly nappy will need you to repeat the below technique a few times to ensure he is clean.

• If it's a smelly one, use your free hand to remove the dirty nappy and stick it in the carrier bag. Don't worry about your changing matt getting dirty they are wiped down by anti bac wipes. You will need to use your free hand to  grab a baby wipe to clean matt enough to put your child's clean nappy and clean bottom down.

• Take your childs feet and bring them together whilst bringing your other arm underneath his legs so his ankles are sat almost in the bend of your elbow.

• Lift the child's bottom with  forearm and with your free hand grab nappy and place it under his bottom making sure the fold that lies across the middle of the new nappy goes up to the middle of his botty, it will seem too far up there is a point to this.

• When you land your child on top of the nappy, tug with both hands/mouth to get the nappy exactly where it needs to be to fold around him.If you don't position the nappy up high to start with the task is more difficult because you will have to lift baby up and down to pull the nappy up around his waist. Pulling down is easier than pulling up. 

• Do tags up.Put all away and pop trousers etc back on. Yeay done for another hour! 

What to do if you can't use arm to lift:

Rolling your child to change nappy.His nappy isn't smelly thankfully! 

                                            

• You will need to use a towel instead of a matt even with a smelly nappy. The matt has edges and you are going to need to roll your child instead so edges are irritating!

• Place child on towel, on bed his feet facing you. Have toys to the side of your child that you will be lying them on.An older baby will happily support his weight on his side and play.

• If using your upper arms to roll you need to position both arms at one side of baby,one just under armpit and other arm at his hip level.If using your head you will need to position your head at the waist level on your child's side. 

• Make sure the clean nappy and items needed are on the opposite side to the one your child will be lying on. 

• We support our child on his side with our head or one elbow lodged into the bed right by his side to keep him there! With our other hand we grab our near by items. We clean him up etc.

• Move the clean nappy right up to the side he is lying on even though the tag will bend up that's ok because when he is rolled back the tag is easily popped out or exposed. Position the nappy up too high rather than too low, the crease of the new nappy really needs to be as high up as your childs mid bottom area. 

• He is rolled back, nappy is tugged down and tags retrieved and done up. 

Phew take a rest, you both deserve to!

Lets talk fashion.

Cute easy baby fashion!

                                                         

What's hot on baby wear that is both gorgeous on him or her and yet is easy for you to put on and what will be being placed in the proverbial bin!

I have spent far too many hours than I care to mention checking all baby clothing shops and sites and doing such research. I have stretched waist bands. checked out button sizes and button holes, looked for things with feet built in, zips and warmth and cuteness because after all, like any mummy, I want my child to look nice.

What's HOT:

Pajamas with long sleeves and envelope necks.

I purchased some very cute pajamas from Tesco clothing and they come as a two pack.Note the easy envelope neck opening means if dressing with poor dexterity or using mouth the top is easier than non envelope necks to get over a child's head. They are on sale now so get them quickly!

               

Don't forget George at Asda available online and in store Pink girly PJs also available in blue for £3

2. Zipped Sleepsuits as daywear.

These suits are seriously a godsend, easy to stick on,no fiddly fastenings, look cute and are warm! If you find them easy to manage get a load in as they go from shops come January! Here is a sample of what is available:

Next stars sleepsuit for boys and Next spotty sleepsuit for girls. No image available for this on blog see links.



Teddy zip suit for the warmer spring days or as PJs perhaps. Not for cold days though!

Girls sleepsuit from George

Boys sleepsuit at George

3.Outfits with feet. 

Avoiding the nightmare of socks! 

Next do a lovely fleece dungaree set with buttons on the dungaree part, unfortunately there are two poppers on the t-shirt but we ignore doing those up or maybe do one if our hands are working that day. 

Next-Monster

Vertbaudet do a lovely boys outfit that although expensive is a good smart outfit for the festive season.

Cute Vertbaudet baby boy outfit

La-redoute all in one,easy big button fastenings.

Next do an adorable "white elephant dungaree set" with easy, good sized button fastening with feet sewn in-pls follow link Next elephant set

4.Leggings with feet.

An excellent substitute for girls as tights can be difficult to grip and sustain the grip in order to get baby into.Good for both boy and girl as are a substitute for trousers and avoiding the battle with socks.

Legging with feet a substitute for tights

You can buy many colours of leggings with feet from all over but Ellos offer a fair range, please follow link All different colour leggings with feet

5. Dresses with no fiddly fastenings,not a popper in sight! 

Mothercare pull over head dress

Easy wool pull over head dress-House of Fraiser

6.Zip Jumpers/Cardigans/fleece tops. 

No worry about pulling a top over a babies head. Simply lay the top on a bed, open top up, place baby in middle or roll baby onto top, put baby in and zip up. 

Vertbaudet zip cardy

7. Button neck jumpers.

Vertbaudet boys sweater

You seriously do not want to struggle trying to get the largest part of your baby through a small head opening, it is physically difficult if you have weak muscles or poor grip and scary for baby! 

What's NOT:

1.Poppers.

 Difficult for poor dexterity users. Hard to press together, hard to rip open. If you get vests then get supermarkets own as for some reason the poppers are easier and struggle with just doing the popper in the middle.Or get someone with a sewing machine to exchange poppers for velcro, alternatively depending on how big your baby is Mothercare do some velcro long and short sleeve vests in their prem baby clothes range. 

2. Small head opening t-shirts or jumpers. 

Horrid for the baby whilst you battle getting their head through, baby gets scared, you feel bad and worn out, disaster. Look for envelope neck openings or big button fastening jumpers/t-shirts. 

3. Thick elastic on tights, leggings,PJs or trousers. 

Thick bands of elastic can either be awful if you have weak grip or really useful if you don't have the flexibility in your hand to make a grip. My husband will prefer thick elastic as his fingers do not flex. I prefer a thin band of elastic as my fingers do flex but my grip is weak so pulling thick elastic over my childs bottom is difficult. 

4. Zips that jam on sleepsuits,jumpers.

Check zips before you buy because if they are difficult you may as well not have purchased something that potentially can make life very easy.

5. Tiny buttons on denim material.

Nightmare,heavy denim does not have a lot of give so only too often the button hole is too small for the button and you can be there for a long time just fiddling about with trying to push the button through the hole, no good if you have a wiggling baby getting more and more annoyed with you.  

Always try things in the shops before buying unless you know you can manage zips and buttons on your own clothes. I think that is the general rule with buying clothes for your child, if you can manage certain fastenings on your own clothes there should be no reason why you can not manage on your baby's clothes.

Happy shopping all x

                             

                                                         

The art of juggling

                                                                                   

Well I went to London to see about updating these knees, you know a bit like updating a laptop or a computer, you feel your technology is getting a bit slow, you don't know if you really want to take the next jump but you can't keep waiting for an age for something to work and get into gear! That's what it is like as a mummy with any physical illness and in my case plastic knees that have served me well for 18 years.

Off I went yesterday,with a Mr Chatterbox ambulance driver, for my 7 hour round trip to see the specialist surgeons for JIA. These surgeons are specifically excellent at sorting out tiny, almost baby sized joints and because I was treated solely on steroids since 15 months old my joints have not grown to full adult size.

I got up at 5.30am, fed my son,cuddled him,read to him, practically tried to live a whole day in one hour with him as I wouldn't get to say goodnight to him that day. I got him dressed for the day because Daddy tends to dress him in a daddy way, I'll say no more on that but mummies know what I mean!

I text ed my sister to ask if she could help my husband in the afternoon and take Christopher off his hands for a break which she did, my sister takes my son out for his Physical Education, she is a bit of a health addict,so he went for a jog around some fields which gave mark a break from lugging him around which has a big impact on his pain levels. I am so grateful to have a sister.

All the time I was texting the ambulance driver who couldn't stop talking was offering running commentary to my phone use. Finally we got to UCLH to see Mr Witt the fantastic plastic surgeon.

UCLH has self service checkouts like you get in Supermarkets, it won't be far off before they have patients wearing bar codes at that place so we can just swipe ourselves in and swipe ourselves out. However the system was drastically going wrong and I got into a department of irate patients which helped my Mr Chatterbox headache no end! Fortunately I am known in the department as I have been going there for 30 years so even though self service was not logging patients in, they could see I had turned up.

I went to see the surgeon who was a registrar, my heart immediately sunk, if I am to travel 7 hours then I expect to see the main star of the show at least! However he was actually quite good, Mr Witt obviously selects his people carefully. He had interpersonal skills and actually listened,registrars often are so keen to make it they forget to listen! I explained how my knees were crunching bla bla bla.I explained that I was so worried about having to leave my son right now because love aside, practically I fear for my husbands joints and the strain they are under when having to spend potentially weeks without me and having to carry Christopher, get Christopher dressed, bath Christopher, all things that cause us both an awful lot of pain and that is sharing the load!

The x-rays showed my knees were stone age knees and needed updating as they were worn and unstable. The little guy went and got the big gun in so I got to see Mr Witt, they are such nice chaps they said "call us if they are getting worse, we'll keep an eye on them and see you in 12 months" I was so happy! It had weighed on me all week the worry of what would I do about Mark and Christopher if I was made to go in next month for surgery.

So I am home, with my family and thankfully not got to worry about leaving them unless something drastic happens to my knees. If they can last just another year, maybe no wii fit for a while, I won't even attempt to do a stair for the next 12 months, I can make them last long enough for my son to be walking and able to understand basic commands so hopefully it will be lighter work for my husband. My son is so amaizing to me, I want to be with him, I dread leaving him, it will be heartbreaking when I have to go for a few weeks away from them both. When the time comes I will do it with a smile, I will do it knowing that I am doing it so I and the family have a better quality of life together.

Thank you for reading x

I got on that thing called floor today!

                                                                 

I know that some things in animals are innate like a duckling taking to water but I thought I would take matters of child development into my own hands,head for the dreaded floor and teach crawling!

So I slid off the bed in my sons room onto the floor. My husband popped Christopher onto the floor. I then stated to slither around like a badly co-ordinated snake in my smart work dress! 

I had at least struggled onto the floor so I was going to make the most of it. I rolled my son onto his tummy and rolled onto mine and we both just lay there like stranded slugs really, all be it petite slugs! I had a toy car on the floor so I pushed the car ,with my nose, towards my son. We laughed, we both collapsed with exhaustion at one point, heads in the carpet but both he and I put our heads up,looked at each other and a great big semi toothless grin came over his face,I felt I had gotten a grip of one of my fears and was being the best mummy I could be. Rather than worry about what I can't physically do and what Christopher may be missing out on development wise because of my lack of being able to move like well parents, I would at least have a darn good attempt at it! 

So we stayed on that floor for a good hour! Ok neither of us will be winning crawling races but at least ,in my mind, I feel I have done what any other parent would do. I actually think few parents would do what I did, I expect they would be sensible and pop their baby on the floor and not actually get on their tummies and demonstrate crawling but heck, I laugh in the face of dignity haha. As I say if it takes you ten mins to slide off a bed onto the floor and another ten to try and get back up and your husband five mins to bend enough to pop baby onto floor, you really have to bring home your point! 

So tomorrow my assistant dog, who is after all trained to help me up from the floor, I, baby and husband will all be going for lesson two in crawling.

We may have odd ways of doing things, we may go about doing things in a slower way than "able bodied" parents but we are teaching our child that "where there is a will there is a way",not to give up or give in and let others sort it out for you and that a bit of patience reaps a lovely reward, heck I waited for years for my husband and child to come my way,I have definitely been given the best reward any one could ask for!

Lovely parents, whoever you are reading this, hopefully someone is reading my waffle,keep smiling and keep being the fabulous person you are x

P.S if you think I'm taking a picture of my son and I demonstrating a crawling session then you are seriously mistaken my friends haha.

My concerns as a disabled parent.

                                                                  
Ok this is a therapy session for me so I apologize now to any one reading wanting a helpful blog. Maybe it will help others as it shows my human side and equally shows what a disabled parent worries about.

I have a wonderful little boy, a child I never dared dream I would have had in my life. When my husband annoys me I never fail to think how grateful I am to him being in my life and giving me kindness, friendship and normality. I never thought I would be acceptable to marry let alone mate with haha! I had had previous boyfriends that frankly prayed on my feelings of low self worth and worked on me feeling worse usually because they had huge social difficulties and insecurities themselves. So I dumped them! At least my parents had worked on me having belief in myself in order for me to do that.

I had a fantastic childhood, been brought up with a good education,two parents who always put their children's needs before their own. However despite having friends,I have spent a lot of lonely times growing up. I was wheelchair bound at times and so couldn't go out to clubs or pubs as a teenager, I didn't start dating till I was in my 20s. I couldn't even go into a park to play with children or splash around a pool easily when I was very young. As a result I made "strange" friends, friends who were not very good socially,lack empathy or thought, didn't want to go out much or have any ideas that extended from home life. I used to find these friends dull in all honesty as I didn't have the physical body to do so many things but I had the mind set.  I don't want my husbands and my physical illness ending up in our child not getting access to a normal and happy peer group. I stopped Bounce and Rhyme because frankly my son was too young to get anything out of it and I ran from it because of one ill educated woman being rude to me and I am angry at myself for being so weak. I know I have to try again and put up with the odd looks from other parents etc. Our son deserves every thing and by isolating him from his peer group it will no doubt set him in bad stead for being a fun and happy child at Primary School. I don't want that for him.I want him to make friends that know how to have fun, have a good imagination and there for him. I dread going into these parent and child groups but I have to try for my son.

Then there is my treatment, because I had arthritis at such a young age I have a very slight frame and tiny joints. I therefore have to go on a 6 hour round journey to London to see specialist surgeons and if I need surgery I have to be so far from my family. I have to weigh up the pros and cons of going to London now. I can't just say my parents took me all the way from Scotland because it was the center of excellence for Juvenile Arthritis. I have to consider that that is what they did for me as they wanted to do the best by their child but what is best for mine? On the one hand my son will have a mummy who has the latest technological advancement in replaced joints, my plastic knees have lasted since I was 16 years old and am now 34! Maybe two weeks in a London hospital with out seeing my husband or child is worth it if it gives me a better quality of life and therefore I'd be a more well mother and wife? If I go else where will there be a surgeon willing to take my specialist case on locally? Will he or she be as good as the London chap? I am off on my 6 hr journey on the 23rd of Sept, fortunately I have grown up with this surgeon so he and I have a good relationship, I'll check his address book out for mates who might tackle me and my strange body!

One of my best friends and my chosen victim to help out on Wednesday, mwahhh hahahahaaaa.

Then there are concerns about our son and how big he is getting. He is very healthy and tall for his age, he is not yet nine months and already in 9-12 month clothes and rapidly growing into if not out of these soon! He loves his food so he is no lightweight! We can not get on the floor to play with Christopher. Therefore every thing is done on the bed. He can sit up on his own but he really is showing no signs of crawling yet, he learnt last week to roll over on his own. Somehow his physical development seems to be slow. I was walking at 10 months old, there is no way Christopher will be. I fear this is because my husband and I can not sling him on the floor and pick him up, we can't bounce him on his feet in our hands so we struggle to put him into his door bouncer to mimic this. The door bouncer works but boy are they all a bit hard work! I am not an over anxious mother but I don't want our disabilities holding our child back. So I am going to have to call in the troops in the form of my sister and parents. We have good friends but none of them have children and I think feel a bit scared of our son so they can't help but I might have to force ably enlist one of them to do floor work this Wednesday, he could do with some daddy practice for his future any way!

See he is huuuuge hahaha. 

Finally its car seat trial time again, OH GOD! I need to find time to get along to Mothercare to start testing them out once more. The Maxi cosi pebble is good for now, still a bit rubbish to get him out of and blooming heavy. I think I may look into an axis seat as these turn 90 degrees to face the car door, sounds good just need to motivate myself to try errrgggghhhhh!

Ok moan over every one. Thanks for reading I promise the next blog will be up beat and trying to help :o) x

Holidays and Children

                                                                         

I am not complaining but......

No honestly I have nothing to complain about. However my husband and I have been married for 2 years and in that time we have gone virtually no where in order to pay for the up keep of our lovely home which I am very proud of but it means the IKEA kitchen purchase always ended up taking pride of place financially over having a life. If it wasn't the kitchen it was our back fence as our current one was falling apart and if it wasn't that it was saving for our sons arrival so we could get him whatever equipment helped us to care for him or just normal parents stuff of decorating his room so it looked child pleasing rather than old lady utopia!

So we went for it and went to Woolacombe for, hold on to your seats, a whole 4 nights....ooooooo! I had been with Eurocamp before and stayed in their caravan holiday homes and found them excellent, good comfy beds, a shower that I could manage and a nice lounge and accessible kitchen area. Even getting into the accommodation was easy enough as you could select a home with decking outside which meant more gradual steps up to the caravan. However the place in Woolacombe was some what different. We were beside another couple with a baby and they looked as exhausted at the end of their holiday as we were so I am not blaming my difficulties purely on being an arthritic. 

It took us a whole morning to pack the car up because my husband struggled with cases, bumbo seat, more cases, nappies,nappy bags, baby food, baby sterilizer,bottles, changing mat etc etc. We had already spent a whole evening packing every thing prior to putting it in the car, we needed a holiday from just the energy expended with this activity! Eventually we loaded our son into his car seat after he had pooed and needed a change, then having realised he had chucked his milk down his vest and was soaked, another change. We both took high amounts of pain killer in order to be able to drive the distance. My husbands foot always goes numb, then cramps and then hurts like hell so until we get to a service station he is virtually crying! My knees are due to be revised on the 23rd of sept and really are crunching and creaking and then just slip out of socket causing pain. The only way we can cope is by dosing ourselves up, still one thing was for sure, we were all happy in that car,even our son had calpol for his teething! We were all singing along to music on the radio etc. We stopped about 3 times mostly because of needing to feed, clean and feed Christopher (son) again! If you have a child, get a car with a good back seat space because baby changing stations in service stations are gross and not accessable for any one with limited arm and hand movement. 

We got to Woolacombe at 4pm, I took one look at the big steps into the caravan and laughed! My husband had to push me up them like he was pushing a hippo! I tried to bend my rubbish knees onto each step and then he pushed me with his back on mine up each step as since my old knees are giving up life I have no muscles around the joints to push on to do stairs. Eventually he got the old girl in! We both said in unison "ok if we go out we sure had better make it worth it". Christopher then followed in a much more gracious manner in his car seat followed by his luggage and then my husbands and my one bag of stuff! 

The space was fantastic in the caravan once in, a good sized kitchen with microwave and all mod cons, good sized bedroom for his cot and a decent double bed for my husband and I plus two toilets, one shower room and another child's bedroom. The accommodation was very good if it hadn't been such a struggle for me. We stayed on a quiet old person and young family park, there were noisier parks available with more entertainment on them but we didn't want noise!

We have a travel cot which really requires its own blog. For now we will say these cots are not accessible for any one with poor reach, poor muscular strength in upper body or bad backs. Choose your travel cot wisely! Christopher is very comfy in his and sleeps well in it but my poor husband could hardly move at the end of the holiday as he had to do all the picking him up out of this cot.

We did however have some lovely times and the struggle felt 100% worth it. We took Christopher to see the sea for the first time, we live no where near a coast so this was different for him. The closer we walked to the shore line the more he giggled at the crashing waves. We looked for shells in the rock pool which he tried to eat! If we had found a crab he would have stuck that in his mouth too!

We strolled slowly around Woolacombe,old people over taking us!  We had a lovely meal at a place called "The Red barn". Christopher sat in a high chair there that I am now on a hunt for. It was a simple seat with a simple across strap to harness the child in with a bar across the seat, if I find a source I shall let you know. The chair was a great height for me that even I could get him over the bar and into the chair. I have to admit I have just gagged at this memory as we ordered an all day breakfast one day and he had my hash brown and was sat there sucking it in his hand whilst the fat oozed out of it ewwww. It was tasty and well cooked but I won't be eating hash browns for a long time!

Painting at "Waves cafe" in Woolacombe.

Being creative is clearly exhausting!

We painted a plate at a pottery cafe. This was a gentle easy activity, the cafe was accessible, we all sat at a table with paints and brushes on it, ordered a hot chocolate and took a plate and created works of art. Christopher tried to paint one but he also tried to eat the brush so we ended up doing his foot prints. Then my husband and I created ours. They will be adorning the wall of our new IKEA kitchen!


We came back from the holiday asking ourselves would we do it again with a child of 8 months. The answer is no, we all had a lovely time but any parent will tell you their child doesn't get that much out of going away.You could go out to a park for the day and he or she would enjoy themselves as much. The amount of stuff to pack is phenomenal and you still don't have every thing to make life easy. If you add physical disabilities to all the hassle of taking a child away,leaving your accessible home you find it ten times more tricky. I couldn't help get Christopher out of his travel cot, I needed help in and out of the caravan, I couldn't have a shower to loosen my stiff joints in the morning as there was a huge shower step which I couldn't do safely.

If I was to pass one important bit of information on to any parent but especially those with physical difficulties, it would be don't go on holiday until your child can walk,needs less stuff and understands being patient because things take a lot longer to do when you don't have your set up that you have at home.

Our next holiday will be Euro Disney and when he is 3/4! Until then we will strictly be going on accessible days out which I shall be reviewing soon.

Cheers. x

COTS-a blog I have been putting off for an age!

                                                    

I have been dancing around the great big elephant in the room ,that is the subject of cots, for long enough! This is a difficult blog to write because cots are just hard work and every parent whether able bodied or not will have a wealth of different views on what makes a great cot! However it has to be dealt with because no one gave me any idea and I spent many painful hours on knackered pregnant lady knees and I had no idea what I would need to consider.

We purchased the cheapest cot available in Mothercare as we knew it was likely that it would need adapting by my father. We felt if something went drastically wrong we had only spent £50 and could afford another. We purchased the Ashton cot -NOT TO BE CONFUSED WITH THE ASHTON COT BED! Cot beds are a whole different set of issues and frankly I would avoid them like the plague if you have short arms,bad back or can't bend because the base of cot beds do not alter enough. Go into Mothercare and try every cot, the "Ashton cot" has now been replaced by the "East Coast Nursery Barton cot" at Mothercare online but there are many in store models that have the base height raise to the same depth as the one in the picture below:

"East Coast Nursery Barton Cot" from www.mothercare.com

This cot and the Ashton has an easy operated drop down side, do able with one hand, little muscle power etc. The base came up really high as you can see in the above picture,so I found it easy to access a baby at the start of its life.

My son was tiny at 5lbs and 5oz and didn't like the feel of great big spaces and the first night he screamed and screamed in his cot until I placed him in his carry cot which sat in the cot!

I use a stair lift to get downstairs and I placed his carry cot on the lift seat, did the lifts safety strap around the cot and my husband who can sort of manage stairs walked alongside the lift as I drove it down remotely. I would lie his carry cot on the sofa downstairs during the day and he was happy. I would never leave him un-attended on the sofa.The carry straps made lifting him about easy because there were nice big straps to stick over my forearm as I find holding  things by hands tricky and painful. I got a carry cot cheaply from e-bay and chose a soft one as these are lighter to carry.Make sure you get one that has proper straps clearly attached to the carry cot, anything that describes itself as folding into a handbag holdal does not have proper carrying straps despite it may look like it has a carrying handle. Look for something like the Maclaren Techno XLR or Britax Soft Carry Cot,I am a very over cautious mother, I know but at least you know I am not suggesting mad dare devil things to do with a child!

Maclaren Techno XLR carry cot available only online at www.mothercare.com. 

Christopher got too big for his carry cot, he still wasn't sitting at 4 months but my husband and I knew we would have to do something quickly about dropping the cot base. So my husband constructed four huge cot leg blocks which he put on each leg and nailed each leg to it to make sure it was sturdy. This raised the cot right up so when the base was dropped it still meant it was at waist height. However it also meant the top of the cot side was at my eye level, fortunately my arms could just about reach to still do the side.

Eventually we saw an Occupational Therapist as we could hardly keep raising the block height on the cot,I would end up needing a ladder to get the cot side down! The OT got in touch with an organisation called REMAP who do bespoke adaptations for free,sometimes they will come up with a specific piece of equipment they design and make for an individual. The organisation is comprised of engineers be it electrical,civil engineers,retired health professionals such as Occupational Therapists etc and they all do it voluntarily. This organisation has a fantastic group of people who give their time to make a real impact on a disabled person being independent,they helped me in my lab when I was studying for my Biology A-level, I never dreamt I would see them back helping me with my child!

 A link to REMAP is provided at the end of the blog. The engineer and my husband spoke at some length, I did some demonstrations of my tragic arms and muscle strength, the man from REMAP took the cot away ,worked his magic and now the cot stands on long legs but the side stays put and drops down further when the base is at its lowest point. Now my son is safe even if he chooses to have a party in his cot!

In summary, get a cheap cot but one that is manageable at the moment for you, don't get a cot that hasn't got a good adjustable base already or a cot side difficult to drop down,people can't work miracles in seconds. Get in touch with your local council- Adult Social Services department and ask to self refer to an OT preferably whilst you are pregnant because referral can take a while. If that fails then get in touch with Remap directly,they are helpful people and will do what they can. Get a carry cot that is sturdy, not one that is described as being able to be folded away.
I would stay clear of swinging cribs which are dangerous if you struggle with picking a child up,the last thing you need is the darn bed moving too!

Take a look at "Baby bed blocks" available in Mothercare or at www.mothercare.com .Consider these if you have a bad back, poor reach, painful upper limb joints etc:

Baby bed blocks, fab idea from Mothercare.com see link below.

http://www.mothercare.com/dp/B000VAOXL6?ref=sr_11_1


A friend of mine with equally poor muscles and very limited arm use suggested to me that a "co-sleeper" cot that goes right up to your bedside is useful because you can slide your baby over using your mouth and onto your lap.You can even feed the baby if breastfeeding by rolling baby on to its side facing your breast, wiggle yourself up to babies mouth and hey presto, one baby having a fantastic meal  I can only suggest, I always recommend you having a look at any baby item in a shop first and it is up to you to ensure the item suits your specific needs and your child's needs.

NScessity BabyBay co-sleeping cot from www.amazon.co.uk

Bedside cot co-sleeper,height adjustable from www.amazon.co.uk

http://www.remap.org.uk/






If you want or need to spend £2000 on a cot that is adjustable by the press of a button or that has gate doors these are available and you can look at them at: http://www.livingmadeeasy.org.uk/children/cots-accessible-for-disabled-parents-2834-p/

However the purpose of this blog is to review normal high street,affordable baby equipment that is useful to the disabled parent. I can only ever have one child because of my joints and illness etc and to fork out £2000 is not sensible when I can manage a cheaper alternative, however if you need such a cot I would urge you to contact your Adult Social Services Department ASAP, they will know of charities that can help you fund one of these if they can not help find the funds for you.

Good night, sleep tight, mind the bed bugs don't bite :o) x

Socks On update

                                                                   

Well the turquoise "socks on" arrived on our doorstep yesterday.

My son has been giving them a real test drive and here are my thoughts.

I brought aged 6-12 moths as he is 8 months. They arrive on little feet card cut outs. it is very obvious how they go on. They look like tiny bits of Lycra fabric with a hole in the middle for the heel, they are available in every colour of the rainbow and then some!

I peeled them off the cardboard and approached my sons feet. I had had the usual day of finding socks lying around his cot every time I went to get him after a nap. I put his socks on him again for the 8th time that day and then slipped the "Socks On" over each sock. I must admit I found them fiddly, you do need a bit of grip to be able to manipulate them over a child's foot. If you have no dexterity then these will not work for you. I tried putting them on with my mouth but they are so tiny you would struggle.

As a mother who can use her fingers and hands to some extent, although my grip, hand movement and strength is quite restricted, I did manage to get these "Socks On", on! I got my husband to also attempt putting them on as he has only a pincer grip in his hands, he has no ability to make a fist and struggles with fiddly buttons, however he has more strength in his hands than I do. He managed to get them on too.

They look lovely, almost a fashion trend. I must admit having worn hand splints and various bandages etc on me as a child I was a little concerned they might look a bit "special" but not at all! They are super lovely.

Finally ladies and gents, the socks stayed on, I have won the battle with my son! My son sat in his Bumbo and pulled and pulled at the sock and got no where. We went out to my sisters house and he went for a walk, no socks were left lying around the roads for once. The socks stayed on all day.

 This has been an excellent product and I shall be buying more colours,they are very cheap wherever you buy them from, the most I have seen them retail for is £5 and you can usually pick up a pair for around £3. They are well worth the fiddle of getting them on if going out. I don't worry about socks if we are not going out, in the winter he'll be in zip fleece sleepsuits with feet already in built but for going out and about in smart wear,"Socks On" get a definite five stars for parents who struggle to pick flying clothing garments off the floor! If you suffer from a bad back please think about saving yourself a lot of pain and effort and get some!

For information on this product visit http://www.sockons.co.uk/index.html
Available from many retailers such as www.kiddicare.com or www.amazon.co.uk


That's all folks for now x

Good morning creaky people

Hope you all slept well, my husband sounds like an old motor car, chugging away, bad chest. One of the joys on being on one of our medications called ANTI tnf or Enbrell is bad chest infections. So he is off to the doctors to stack his body up with steroids and anti biotics. I meanwhile have pill popped for the day, feel super happy and ready to get on!

I have just finished wrestling with my son in order to get him dressed,he is into autumn clothing now which means even more mucking about as there are more layers required. He and I are both off out later for his cousins birthday party which reminds me that I must finish wrapping presents and get Christopher to draw a scribble on some card for a Birthday card. I need to walk my assistant dog otherwise she goes on strike and almost looks at me as if to say "you can forget me picking up his toys for you!". Then I need to discuss having a wall built at the front of our house with a builder who is popping over and complain to IKEA that the kitchen installers left two arthritics with kitchen doors that have been fitted so badly  that we have to try and slam the doors shut, not great for rubbish hands. Life of a busy parent, often disabled parents can't afford to be disabled, just as any parent can't afford to be ill,you just deal with it, get on with it, no matter how mad "it" and life is. I like it that way, better than sitting still feeling fed up or bitter with life, bring life on I say!

Hope these "Socks On" things work because our cheeky little one keeps sliding them off and dispersing them every where! This is fine if we are in the house but not so hot out and about because either my assistant dog is constantly having to pick them up before we even get in a shop or my rather ill husband attempts to and I think he would keel over today if he had any sock picking up activity . I will let you know, they may be the answer to our prayers!
 www.amazon.co.uk

Right my mother is over now, best go discuss plan of action with this front garden and wall, she is helping us buy astro turf for the front garden as we both struggle with lawn mowers, in fact truth be told we can't use one and an electric sheep will just get stolen at the front of the house despite us living in a nice area. I feel a bit sacrilegious putting in my "English Country Garden" Astro Turf! Mind you,if they made great big Lego flowers for outside of houses I would be buying these cos that would look fantastic and just a laugh, there's a thought for you Lego!

High chairs and huge scares!

Oh now this is fun and games. I have to shout out a huge thank you to my local  Mothercare in Gloucester UK www.mothercare.com My husband and I dismantled their lovely shop display and the shop assistants were very happy we did so.

High chairs is a difficult subject to know how to help other disabled parents because there are a wealth of chairs available and all with different mechanisms and all with different heights etc. I have two suggestions and then will go into my personal experiences.

Suggestion number one get on down to the Baby show http://www.thebabyshow.co.uk/ I have blogged about how fantastic this event is in previous posts, I can not recommend it highly enough for disabled and able bodied parents to go and try out every thing baby related!

Second suggestion is get on down to shops, always go to shops first, the internet is a fantastic tool to search for cheaper deals on your chose chair but always try out in real life prior to ordering anything. Trust me we have made huge expensive mistakes on boldly buying something that we haven't looked at or tested out either via the internet or through Argos. Argos is also a fantastic place to get a good deal but only if you know what it is you are getting. www.argos.co.uk

Ok here we go. It took me a good three months to understand all I needed to understand about high chairs. There are chairs that pro port to have a tray that simply folds over your babies head. Either my child is a giant of these trays are made for the offspring of Tinkerbell ! I sat my son in such a chair and the tray just couldn't get past an ant let alone his huuuuuge head! We just didn't understand it because we had read reviews that trays that simply fold up and over were good for disabled parents as clearly the idea is that there are no awkward catches to release the tray, an easy movement and you can get right up to the seat and hence right up to your child. We just couldn't find a chair like this, we went to John lewis, Babies R Us,Mothercare and nowhere seemed to do such a thing. In fact if anyone can suggest to me where such a chair is please let me know and the blog, your help would be so appreciated.

Other high chairs we tested included a "Chicco Happy Sack" model. Out of all the conventional high chairs with plastic white chairs and a gaudy design this one was actually the easiest to use. The tray catch was fairly easy, I still did struggle a bit and worried that my hungry hippo might not be too overwhelmed with mummy taking an age about the feeding process. However I could at least manage the catch. The tray slides off but the difficulty is then there is a bar going across the seat, this bar is static and I just do not have the muscular strength to lift my son up and over this. Really we had to quit on it. If you have the physical arm strength to do so but not great hand movement this might be worth consideration.

Chicco Happy Sack chair from www.mothercare.com

I absolutely loved the "Convertable highchair" in its wood and actually the concept of something for a baby that lasts more than a few months appealed to me, with this chair he could transform it into a separate chair and table when he got older. All worked well, a really good height for a 4ft 11 person as it comes up to waist height when stood up. My difficulty was the harness which my husband could have adapted with various climbing and abseiling hooks from Go Outdoors http://www.gooutdoors.co.uk/ however just as I was about to seal the deal I noticed a lime green travel high chair.

 I love lime green, loved the price, loved the fact the high chair could sit on one of 1960s swivel dinning chairs and hence I could move my son around easily on the chair to a position easy for me to feed him. Most of all I LOVED the easy tray that you rip off and click on, no fiddly catch to push and pull, the harness was a three point harness and hence far easier to manage than a five point harness. Please note many other disabled parents have said that a three point harness is easier and this information is available on the Disabled Parents Network.

Travel Booster seat with steri touch £26.99  http://www.mothercare.com/Travel-Booster-Seat-SteriTouch-Green/dp/B002EJ001Y

Whilst trying the entire stock of high chairs that Mothercare Gloucester had, we decided to sit our son in a Bumbo, I have already raved about these seats, what a fantastic design, sit the child in and he is held snuggly, no fastenings to muck about with. If I am honest this is just a good a high chair, you can by trays for the bumbo and with no fastenings as a disabled parents you can be entirely independent with this seat. There is nothing difficult about it, my only suggestions is to put it on a sofa but supervise every second! Never leave the bumbo up high if you are wondering out of the room. The manufacturer says never to put the Bumbo on a high surface but being a disabled parent you do have to use your noodle and be adaptive and aware of any risks. Bumbo seats are available at Amazon, Ebay and Mothercare, the trays are also available from these sites.

Bumbo baby sitter and play tray from www.amazon.co.uk

When we feel lazy and can not be asked with any harness antics etc we feed our son in the Bumbo but we are trying to get him to sit at the table with us as a family and so we are now motivating ourselves to actually pop him in his lime green travel high chair and he enjoys it. 

Good luck hunting for a chair. I know I ranted about DLA previously but disabled people have DLA for the purchase of equipment a well person would not need to buy due to being "able bodied". DLA is not for living it up in a way an "able bodied" person can't. My poor sister and brother are both graduates, intelligent people and they really struggle to afford things, I'm quite sure my sister would love the most gadgety high chair for her child but she goes with the basic model because she can manage that chair and its what she can afford.

 If buying a high chair creaky peeps, use your money wisely to get what ever chair suits your physical needs. Some chairs are ridiculously expensive but this is what DLA is for especially if it is the only chair your hands can do. If it is a couple of hundred then start saving now, even if you are at the pregnant stage, you will need to save, you absolutely must have a bigger pot of money ready for equipment you will need. My son has basic clothes, he isn't interested in what he is wearing so I make savings on his clothes, he has three jumpers (one smart) for winter, four sleep suits as day wear, three pairs of rather chavvy ,never be seen dead in public, jersey tracksuit bottoms but they are easy to put on him when my husband and I are not well. Two pairs of cord trousers for smart and supermarket vests,long and short sleeve, long for winter nights in his sleep bag, and one supermarket winter coat. That's it and that does! 

Happy shopping people, although I sound like a lecturer I am trying to make this an information service rather than a chit chat. However please enjoy parenthood because they are not babies for long, the fact some of us have managed to get pregnant with all our highly toxic medications etc is a miracle, enjoy it, you and your child deserve the happiest of lives together ! 

Dedicated to parents with an ill child.

I thought  I would blog about my teen and young adult life, I am sat beside by baby  boy and I can not imagine the pain and worry that must exist in parents of any ill child. However I can offer how my parents delt with having a physically ill child and three exceptionally healthy other children.

When I was a young child, at primary school, I was very popular. I think because I was happily doing what other girls in my class could do, playing with Sindy dolls, looking at my array of wind up pencil sharpeners walk around the class room. My parents always promoted normality, even if I was very ill, I always went to school! They would hold big birthday parties for all of us, mine were planned to the Nth degree as to what games we could all play, a great game for arthritic children is Musical Statues, something arthritic children are very apt at is freezing on the spot! My parents always encouraged all of us to invite friends over for tea because they always felt those children that never had others over for tea were always the ones left out when it came to invites for them. I was forever going over to other friends homes for tea and they to our house.

I was only ever around other arthritic children when I spent time in hospital, I must admit I found many of the children were a bit wrapped in cotton wool and constantly crying, neither of which I was. I did meet one of my dearest friends on ward. She now works for the UN as a multi ligual interpretor. I am so proud of her, her parents are exceptionally proud but boy I bet they were anxious every time she decided to take herself of to a Third world African country to volunteer during her holidays! She even had to go to British Embassys to get her medication!

She and I were a rather naughty combination on the ward, I point the finger of blame at her hehe. She would wake me at night when our parents had gone back to their rooms. I had learnt to undo all my leg splints and hand splints as I had had arthritis for a lot more years than she did. So she would ask me to come over and help her get her leg splints off, I did so thinking she was a bigger girl and must know what she was doing (I think we are only a year apart!). I then crept back to my bed and put my splints back on badly. The nurses cottoned on to what we were up to by the various piles of splints either removed deliberately or because they had fallen off! We ended up with good behaviour charts! Outrageous! I had never stepped out of line with my parents, school and never had behaviour charts! She was the only friend I had who understood, who we could joke about moving slowly with one another etc. She still is  the only one friend I know who really understands apart from my husband. My parents have a parental view of me, they don't want me to push myself too much, even now with my son they ask "Why do you want to be doing more than being a mother?", they mean well, they are scared I will pull myself into hospital again but I have a brain and I have a desire to help others, I can't just sit playing and reading with my son all day without anything else, my mother couldn't just sit around and I learnt well from her.

In my early teens I found life difficult. I was huge because of steroid treatment, I must have been a size 16, couldn't walk, callipers all over my legs. I felt I looked different, I felt embarrassed of myself and I longed for new knees so I could get rid of the callipers and start walking and not being dependant on anyone to get around and even onto the toilet. I continued mainstream education at all times. When in hospital,all the other children I spent time with on the ward, got fluffy toys and pretty presents, I got Lets revise Biology, Maths and English guides!  Around this time my brothers and sister were my real friends. I would spend hours playing with them and I still am so glad I was one of four.The only aspect of my siblings that I find hard to deal with today, is they were shielded a lot from my illness. I don't think they really understood some aspects of being a bit wonky. My mother has to make me dresses because I am 4ft 11 and have a very curved spine, I can't find dresses or tops that do not show that off. She makes dresses that hang from the shoulders and have an empire line which hides my curve and so I look like a normal, petite woman. My sister goes bonkers when I get dresses made for me, she wants some made for her, I can see things from her point of view completely and it is almost cruel on her that she doesn't understand why these things are done for me and not her.I think my parents were right to not bombard my siblings with tales of difference,illness that might have scared them. Both my mother and father tried hard to set up a normal family life where we all just got on and didn't dwell on hospital visits,my parents never spoke of my visits in front of my brothers and sister. The poor people had to drive hours and hours to get the specialist treatment for me, they did a seven hour round trip in a day and still took every one to the park the next day! I can see that when normality is so important when someone is ill in the family, I would never do any thing different to my mother and father, I think parents of an ill child have some super human inner strength, they go to the ends of the earth for every member of their child, drive miles and miles, watch their ill child go through painful treatment and still manage to laugh and love every one.

 I ended up doing my A-levels a year early. This was not great as a child, a great thing for parents to feel proud off, awful as the baby of the group and add on top of that my size, my wheelchair ..oh god! I would listen to my fellow students reg ail their clubbing antics on a Monday morning, where you could buy great make up and I felt different. I still had friends but they were always the slightly odd ones. I guess these students befriended me because they felt socially different etc and actually I found them hard work at times as I pride myself on being good socially. Finally I got replaced knees. That day was like the day when you pass your driving test,graduate or get engaged. I was so happy. I underwent an 8 hour operation as they did both knees to save me hassle or more time of school, I think it would have been a 6 hour op but the surgeons decided they needed a good lunch break,can't blame them though! The rehabilitation was hard, I hadn't walked for years and I spent days between parallel bars and Physios motivating me like a parent does when their child is taking their first steps. I spent months in hospital trying to get muscles back, eventually I took some steps on walking sticks, I felt very proud. My father, a very kindly man, was the only one who shouted at me to try and walk without the sticks. I threw them away angry at my father, you know what I walked, still think he was rude though! I walked, walked and walked, I was so excited. My life was changing! I shed all my weight and went to a size 8. I met friends who went out! I could talk about make up they had in "Boots" because for the first time in my life I could take myself of around there. I booked tickets to see "Wet Wet Wet" and we got into the disabled area at the front of the stadium and I stood most of the time and danced.I learnt to drive and gosh did that open doors to me. Around 17 I went into remission, Juvenile arthritis does that, it can disappear as quickly as it came and no one really knows why.

I will leave it at that for now,I don't want to make blogs too lengthy. I will be adding more about growing up with arthritis- The Uni years etc later. I am starting to hear "The Wonder Years" music playing, what a fab series that was about growing up.

 I can not imagine what my parents went through, the inner strength they have stuns me. I can not even pretend to understand what they felt, or how any other parent with an ill child feels, I can not imagine how horrendous it must be for those with terminally ill children.

All those parents who spend years taking their child in and out of hospital and still hold it together for their other children and still manage to laugh and love and try to have "normal days", I just want to say on behalf of all of us "ill children" we do appreciate it, even as a very young child you are aware of how your parents are feeling.I was more worried for my mother when I was 7 and having my first operation than I was about me. I remember I kept checking to see if she looked worried,fortunately my mother is a tough lady and we just got on and smiled, played board games together and passed the time away happily, I appreciate that inside she maybe wasn't feeling so tough but she didn't portray that to me and actually that made me feel safe and strong too. To all parents and all children, young adults or even older adults like me in their 30s keep smiling, keep being strong and good times do come, they honestly do.