wonder to Mount Edgcumbe

This week we had clan (family) come and we took them to some of our favourite places, and that wasn’t even the start of it! We have so many local woods, moorland and more that we could have ventured out to

As you may know already we go to 3 wishes faery fest every year and it is help very local to us, so when the faerys are not strolling amongst us we still pop over to faery land and have a wonder to Mount Edgcumbe

my two spent some of the day being mounting goats

goating

Running around

running

finding huge trees!

huge tree

hugging trees

tree hugging

 looking at the amazing flowers Mount Edgcumbe has to offer,

flowers

lovey day out strolling and walking,

walking in gardensa

we often take picnics here

busy start to summer

we have a super busy tribe for the last few weeks, as I have mentioned in previous posts about bike riding, Pretzel boy had an amazing trip away on a trip that was about sustainable transport, so he took the train, bike, sail boat, all sorts, this is great for him as he loves this topic, and it is why we have an electric car! Keeping our planet clean is important to us!
our son has now started sailing so once a week he is off on a sail boat,

sailing

we have been enjoying all the fun things that are near where we live, I have talked before about how you can enjoy summer from your doorstep, you really don’t have to go far from home to have fun in the sun, sure it is nice to get away, but one day it dawned on us that there are so many amazing places near us and we never take advantage of them, so we vowed to start, ever since then we have been out and explored them! Walking in woods and moorland and visiting beaches and gardens and realising how amazing our planet is! Mother nature is wonderful and seeing her seasons turn all around us is magical!

mount edgecome

beach

Eden project

National Marine Aquarium

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!

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