Learning To Ride A Bike, Low Motor Skills

My son is 10 years old, he has EDS (elhers-danlos-syndrome) also under the category of HMS (hypermobility syndrome) he has had motor skills problems all of his life, he has worked hard and adapted well so that they do not affect him too much.

Riding a bike is something a lot of children have learnt by the age of 10, he has tried so many times and it has been clear that he REALLY wanted to ride a bike, we have had so many new bikes in an attempt to get him going but we never quite got there. He did give it his all, and always did so well, as with other things he struggled with we found that arms and legs working together along with balancing and watching where he was going was just too overwhelming for him, so each time, battered, bruised and feeling deflated, he gave up!

And every time he tried again I was very proud, I didn’t know if he would do it this time, but he was willing to give it his all, again, after so many attempts in the past

This month he learnt to ride a bike, he had a trip coming up, he did some good extracurricular work and as a reward he gets to go on a trip, they are looking at ways to travel that are good for the environment, this is right up his ally, being druids and we even have an electric car!

This trip involved riding a bike, and this time he was DETERMINED!

learn to ride bike

We took the peddles off his new bike and off he went learning to balance, once he got the hang of this he asked for one peddle to be put back on, this was the peddle that he felt was for his strongest leg, the one to get him going and give him momentum.

This seemed quite scary to start with, starting off at a bit of speed, but once it clicked that speed actually meant he was more likely to stay upright, it got easier for him.

So then the other peddle went on and although a bit shaky to start he was off managing to peddle and stay on for a few meters, I was so proud of him, he spent days outside on his bike, practising, then the day came that he rode peddled and turned around without falling off, very, very proud, he had only been trying for a few days!

The day after this, the day we consider he could actually ride a bike, he went off on a training day for his trip, and did a 10 mile+ bike ride, I am just so so so super proud, he went from just about riding a few meters to a 10mile bike ride over night!

riding a bike eds

The week after this we packed the bikes (and my wheelchair) into the leaf (car) and took him on a bike ride to see for ourselves what he could do, we only had one tantrum, on a big hill that even my husband couldn’t ride up! We had a good day out and I was confident he can ride his bike well.

bike ride EDS

Today our son is on his trip, he has spent the day riding a bike, about 2 weeks after he learnt to ride, he camped last night and will be camping again tonight, he is doing well, and is super pleased he could join in, and just be a normal active 10 year old 😀

It really is hard for children with EDS or children with any other low motor skill problem to ride a bike, and loosing confidence is understandable, one thing we did do was make sure he did have his meds for managing his condition!

Our son usually gets to choose (within reason) if he has his meds, if he isn’t expecting to do much activity he doesn’t always need any, but if he starts feeling that he does then he can change his mind and have some, and I can often tell if he needs them as I can see he is shifting his weight to compensate for pain that he hasn’t noticed yet. One thing with learning a new skill that is active is that pain meds really are our friends, it allows us to exercise without feeling as battered and beaten as we usually would, this is more so than most for people with EDS, my son gets loads of bruises when being active too, he is pickled with them at the moment! And although I don’t want him to become reliant on pain meds keeping on top of the pain when learning something new helps with this a lot!

Part Time Wheelchair Users

One thing a lot of part time users feel is that they can walk a little but not more than a meter or two, also for a lot of us it can be hard to keep our energy up making us exhausted fast!

I use a wheelchair part time it has gotten more and more over the years but we expected this, I now always use my wheelchair when out and for standing I use my smart crutches, there are occasions where I can walk, stand or dance (stand and move a little) for a while, this is very painful and I do suffer after, but I do make sure that these occasions are worth it!

This picture sums me up, a wheelchair user, but I have my crutches at the ready for getting up and moving about!

wheelchair and crutches

When we go on days out I use the chair, if I didn’t then I would get over exhausted, I would be in a lot of pain, and would most likely dislocate something, I do often dislocate joints even in the wheelchair, often subluxating my shoulder!

Here is the thing, I will get up out of my chair sometimes, I may really want to see something that I can’t see in the chair (Like my son riding his bike on a trail, for the first time!) I may have some pain that will only be solved by standing and moving, I have been into shops to try on clothes and wondered down the shop a little to look at items, this is often with hubby behind me pushing the wheelchair panicking in case I suddenly need the chair! But it is nice for those few minutes when I am absorbed in shopping and can wonder a very short distance down the shop (about a metre)

There is, especially in the beginning, that thought, that fear, that people will think that I am faking it, from the outside I may look like I am fine, that I can walk, I can dance, why do I need the chair!?

Thing is for now I can still move about a little use crutches to keep me upright, but my time is ticking, this won’t last long, I don’t know how long, so I am making the most of it while I can, even though it is painful!

I take my wheelchair on family days out, if I didn’t I would not make it for even 5 min! and we would never see anything because I am soooo slow! So I take my chair and use it!!

We recently went on a day trip to a country show and everyone walked all day, they had sore feet and were very tired, and I must say how wonderful my family (in-laws) are as they didn’t once say they could do with a push in the chair or that they would like to be where I am, this is because they understand that for me being pushed is painful and exhausting, at the end of the day, we went to the car and I had to move from the chair to the car, it was very painful, my legs really hurt and my neck and shoulders were painful, I needed help, and I cried with the pain, I was thinking that if this was so painful for me in the chair, and I was this exhausted everyone else must be absolutely shattered from walking all day, and they were!

Often strangers make comments about how they wish they had the wheelchair, and the luxury of it, I can see where they are coming from, but what they do not realise is that being in a wheelchair is exhausting and a pain in the bum!

For some of us we have days were we can have some well needed time out of the chair, maybe saved up some energy as much as we can and can get out and do something, like join in with a little dance, limited dance but still feel part of it, and we also have days were we dread even sitting in the thing, or going out in it, the thought just seems too much, knowing that it will be painful.

The alternative is that we stay at home, all the time, we never go out, we don’t see our friends, we do everything on line, from making friends, to shopping, for me it would mean I never get to pick up my children from school and we would never have family days out, and they wouldn’t get to grow into the fantastic human beings that they are.

Just before I got my wheelchair I went to town for the first time in ages, I needed something, so we set out , at the time I had a stick so we parked up, stick in hand and headed toward the shop, I didn’t even get half way and I had complained of pain, my shoulder hurt from using the stick and my back and hips were agony, the shop seemed so far away and I just knew I wouldn’t be able to concentrate on shopping, we had to turn back and come home, this was the moment I realised I needed more help to get about!

Since getting my chair, we have, been to 3 wishes faery fest 3 times, walked out on the moors many times been to zoos, safari parks, went on trains, been to London, I got to go to the kaffe fassett exhibition in bath!! Had a fantastic time,went to Lincoln for a film and exhibition I knitted for! been to the beach, been shopping, get to look at food when buying groceries, been able to go out with the children, been too school assemblies, Sports days! this list just goes on and on and on.

So if you do have a wheelchair, and are worried please do not worry, your life with it will be so much better than without it, people don’t always understand, but there are so many people out there who do! a wheelchair though simple is an amazing thing breathing life back into people!

Away With The Faeries 2016

We had another amazing weekend away with the faeries!

This was our 4th year and we know for sure we will be back again next year 😀

This year was lovely, I usually take loads of photos. This year I did take hundreds but I found I got caught up with having fun being a mer-fae and chatting to friends that I have made over the years

It Is lovely to have a meet up with everyone and meet new people who are coming for the time, after a year or so of going I found that I started seeing the same faces and recognising people, as the years have gone on some of those people have become good friends for us and the children. You do find yourself wondering were some of the people who have been over the years are if you dont see them.

We love seeing the stallholders and food vendors, who come year after year it is always lovely to see them and recognise each other, I am amazed that some of the regular entertainers recognise the children, not just mine others too, it makes it extra special for them, you can see their faces light up with happiness that they have been remembered!

Now we are home and washed some of the faerydust away, I find myself reflecting on it and really being happy that we have a place we can go and relax and just be who we want to be!

I am of course exhausted, I have my wheelchair with me, for me just attending is tiring, BUT I wouldn’t change that for anything, I danced a little and hurt a lot after, major leg, back and hip cramps now, and it may set me back a little…I would do it all again, and I will next year! (if i can) I selected who I would dance to carefully so I didn’t use up all my spoons! (energy) and this year I had the amazing help of my smart crutches! this was great it meant I could stand and have support and dance a little, not really moving me feet or jumping about but still feeling more free to dance with less pain! I really do recommend them.

I have a few photos to share, not as many of costumes as I would have liked as I was just soooo relaxed and happy and in the moment of being with friends and care free, I just didn’t feel the need to keep snapping away, I will share most of these soon, but for now I need a lot of rest and recovery before I share our memories Karen Kay has given us with 3 wishes faery festival!

here are a few just for now

time for tea

 

3 wishes faery fest fairy willow

3 Wishes faery fest bubbles

3 Wishes faery fest huge bubbles

3 Wishes faery fest stage

Making Furry Ears!

So today we are dressed as Mythical Creatures at 3 Wishes Faery Festival!

Last year I did make some cat ears for 3 wishes as part of a Cheshire cat outfit, for this years 3 wishes both pretzel boy and peregrine needed furry ears, one pair for a uni-kitty and pretzel boy is  wanting fox ears, so off with the yarn I went!

I started off with some shop bought ears

flowerears

pearl ears

Then I added furry yarn, for pretzel boy, it was really handy having the structure and holes. I just covered them untill I could no longer see the purls.

red fox ears furry yarn

For the uni-kitty ears I used furry yarn to cover the head band, and knitted a triangle which I attached to the ear flowers.

uni-kitty ears

uni-kitty ears a

kitty ears

then all that was left to do was attach the unicorn horn! Peregrine’s nest made this!

unicor unikitty head band

looking forward to seeing these with the rest of the outfit, will post pics after the festival…as we are fearying….or uni-kittying around right now 🙂

Fabric Painting A Faery Top

My two previous posts (1 & 2) were of fabric painted shell tops, these were made because I had the paints out for this project.

Not really sure what we wanted to paint on I just went with how I felt, sometimes this can be risky but I think the outcome was just about ok with this one.

As before I drew pictures on with a fabric pen (this washes off)

fabric paint butterfly and flowers

Then I coloured them in

fabric paint butterfly and flowers a

Not sure if you can tell in the picture (click to make it bigger) but I used some of the green ‘drawing / writing paint’ with the blue paint to make the colours of the butterfly’s fade blue-green a little.

I can’t wait to see this in action, I made it for peregrine’s nest who has made some other items to go with this (including HUGE wings!!)

Fabric Painting Mermaid Shells!

I posted the other day the fabric painted shell tops they were really simple and easy to do

this is how I did it

keep in mind when it drys these do NOT stretch!! I made a top for my self, I didn’t stretch it when painting so the shells came out smaller then I had intended and did not stretch!

I have used other paints in the past that do stretch, but I think these ones are better for colour and a much wider range too!

I made a shell template

fabric pen

Then drew around it with a fabric pen

mermaid shell

These are the paints I used

fabric paints

Then just paint away

fabric paint afro!

I had to take a picture at this point because i think it kinda looks like an Afro!

afro shell
SEE!

I just filled it in with the blue one, then with the other bottles (the taller ones) I added to it

The taller bottles are designed to draw & write straight on to things however because I wanted an all over glitter effect so I just painted in on over the blue 😀

mermaid shell fabric paint a

And for this one put some green with the writing one over the top edge!

For the other shell I think I used a little green on the shells too, you can mix them together you don’t just have to use it do draw, they mix really well with the ‘normal’ fabric paints 😀

Then with the glitter one I drew shell lines on, which worked quite well

mermaid shell b

I think I will add more detail to this one, maybe both but for now we are happy with them.

With my eds it isn’t the greatest and I did find it hard squeezing the bottles to draw, however I did find, with the glitter one, that if I went wrong I just removed that line with a paint brush and started again, as I had glitter all over anyway it worked out ok,

here are my shells, as you can see not quite in the right place and too small!

mermaid shells wonkey

I do think I will still wear this around the house – why not 😉

End shells

mermaid shell c

mermaid shell d

Mermaid shells!

just a quick post, I had the fabric paints out so i could make some bits for 3 wishes faery fest so i thought while i was at it i would make these plain white tops a little more interesting !

fabric paint mermaid shells

please excuse the hair she was dancing

mermaid shell fabric paint

she is very happy and i am quite pleased with how they turned out, I might add some detail to the single shell after the festival!

Festival preperation

here in the TBK house hold we will be spending the next week preparing for 3 wishes faery fest!!
we are very excited! and have received our tickets now!!
so lots of sewing, stitching and costume making to be finished!
and lots to keep us busy!
I have talked about how we have dressed in the past and that we use a combination of shop bought and home crafted items, this year is the usual mixture of both, I have shop bought dresses with hand sewn/ knitted items to compliment and then one extra special outfit!
can’t wait to show our faery makes after the event!

I feel like since half term started I haven’t stopped and I can now feel it is all catching up with me, so have taken a few days to rest so I am good for the weekend, I probably won’t blog much – if at all- till after the weekend. so if you are going it will be good to see you, if not have a great weekend, and maybe see you next year!?

Easy Garter Stitch Shawl

I have started a shawl for the summer, I knitted a black one for the WW1 film ‘Tell Them Of Us’

It was really snug and warm and I am told the film crew passed it around on very cold days to keep them warm!

It being summer I have gone with a looser knit but still very warm. Keeping the same pattern but the Larger needles giving a different look, and I will be using a different boarder.

It is all knitted in garter stitch so is a great and effective pattern for beginners, you knit a few rows in small needles then every few rows (you can pick how many you want to go with) you use a needle a good few sizes bigger, for this one I have gone for 2mm bigger but I think I would have liked to go a little larger!

I thought I would share a picture!

garter stitch shawl pattern

This knit is currently measuring about 46 inches and I still have a way to go! but it is very enjoyable and easy, iIhave found it a great knit to take out and about.

Give it a go, you can decide how wide you would like it I currently have about 90 stitches and it is quite wide, which is what I wanted, you can use any wool and by checking the gauge band you can work out how many stitches you would like to get your desired width, it will say Xst for 10cm (sometimes for 15)

Good Luck

Colourful May Knit – Pictures So Far!

I have been sharing my colourful knit I was working on during may, this is my own pattern though there are lots of similar ones out there.

I have nearly finished this it needs blocking then is ready to go, I love this because it is easy to get on and off, with my EDS I often struggle to get cardigans on, but this is easier with the low mobility I have.

I will defiantly be making more of these, I loved making it and while knitting I was thinking of the different colour combinations I would use, I would love to knit these for people as I enjoyed it so much!

I think i will call them ‘Festival Waistcoats’ or something similar.

This one will be for 3 wishes faery fest in a few weeks

Festival Waistcoat 1

Festival Waistcoat 2

for when it gets chilli

Festival Waistcoat 3

and the back, I realise now that maybe I should have moved the hair!?

Festival Waistcoat back

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