I particularly enjoy the challenge of getting stuck in to an alteration/extension project, because even just a few small changes can make a massive difference to the way a home works for a family – maybe releasing a bit more space through jiggling about with the space planning, adding better storage to make rooms feel less cluttered or perhaps extending to add an extra room.

It’s widely acknowledged that there is a housing crisis in the UK at the moment, with shortages particularly in the south east.

This compounds the ‘hidden housing crisis’ – the shortage of accessible homes (highlighted by Leonard Cheshire in their #hometruths campaign https://www.leonardcheshire.org/campaign-us/our-campaigns/home-truths#.VU0b2Ry1vvY )

I think part of the problem here is that accessible design is usually seen as specific to wheelchair users.

House design is either ‘wheelchair friendly’ or not. However I passionately believe that inclusive design (whether that’s objects, homes, public buildings or spaces) is for everybody!

If you are young and fit it’s easy to be oblivious to how our environment and buildings can make life difficult for some people, but if you get injured and have to use crutches or a wheelchair, or even try to push a pram or wheel a suitcase around, the environment can suddenly appear very inhospitable, even impossible.

A fundamental element of inclusive design is to consider future uses and varying needs, and design for flexibility which would make future alterations as unobtrusive and cost effective as possible.

One of my missions in life is to try and get inclusion ‘mainstreamed’! I’d love to see inclusive design become every day.

I want to see fantastic examples of accessible homes featured on TV makeover shows and in the homestyle and refurbishment magazines so that disabled people and their families are presented with inspirational examples, and so that ‘non disabled’ people see inclusive design as the sensible design approach for life-long design.

Design that is flexible and adaptable for whatever life throws at you, for varying needs from the very young to the very old and everything in between.

Good inclusive design should allow everyone to be able to participate fully with family life as naturally as possible!

I have lovely warm (well actually quite often rainy and cold!) childhood memories of family days out at National Trust/ National Trust for Scotland properties.

I grew up in Scotland, so our favourites were Culzean Castle in Ayrshire and Brodick Castle on Arran.

We rarely actually ever went into the ‘big hoose’, it was all about spending time exploring the grounds….and my Granny was a champion ‘hider’ for all of us little ones to ‘seek’ out (she was usually to be found amongst the rhododendrons)!

When we moved to East Anglia, when Twinkle was a baby, visiting our local NT properties seemed like such a natural thing to do for a happy family day out.

Twinkle loves the outdoors.

She is very sensory and just loves the outdoor experience in all weathers! The sights, the sounds and smells!

She enjoys the contrast between the woodland areas (with the wind in the leaves and the shadows of branches against the sky) and the ordered formal gardens with their colourful flowers and scents.

Access within the most of the actual houses is not generally ideal (or even always possible at all) as of course they are old buildings restored for historical representation and are often very awkward, often impossible, to adapt (our ancestors were not generally known for their inclusive  design!).

However for us the houses don’t really matter, as neither of the children are in the least bit interested!

The main thing is that the grounds have good access and then of course the café! (cake is usually a key feature of our day out!).

We have several estates close to home so we took out a membership and have certainly got our money’s worth out of it!

I have even started planning our holiday journeys around stops at various NT sites!

We quite often have long car trips from East Anglia to central Scotland (the NT and NTS have reciprocal arrangements so membership are valid in both) and rather than stop off at a soulless service station, we now try to stop at one or two NT sites on the way – where we can eat at a nice café, use clean loos and let the kids have some fresh air and a play.

My only criticism is that (so far!?) we have not come across a Changing Place toilet at any of the properties we’ve been to…..if the NT could have a wee look at sorting that out then it would take some beating as a perfect day out (starting with Anglesey Abbey please!)!

We had always planned on having two children and as life is never simple (we had struggled with recurrent miscarriages pre-Twinkle and time was also running away from us as I was hurtling towards the big four oh!), so there was no time for worrying (well maybe a little bit of worrying)!

Twinkle’s underlying condition would appear to be a random quirk in genetics (as yet undiagnosed) so her geneticist felt it was unlikely to have been inherited and we were more easily able to put the genetics issues out of our minds, however we were apprehensive about how our new family would ‘work’.

Would it be fair on Twinkle?

Would it be fair on a new little one?

Could we give them both enough time and attention?

We decided to wait until after Twinkle had had her heart patch surgery, so 9 days after her 3rd birthday her little brother (Noodle) arrived!

Aside from the surgery, I think the age gap worked well as it gave us that bit longer with Twinkle as an only child.

Gave us time to get our heads around being a family with additional needs, make sure we had the right support in place for Twinkle, concentrate on her appointments and therapies and get her settled a few afternoons a week in a lovely local nursery.

Twinkle is very accepting of people, developmentally she’s not reached the possessive about mummy stage, so we knew the little dude wouldn’t cause jealousy and, right enough, for the first few months she didn’t really register him except if he was squawking too loudly or distracting mummy from sorting her out some food (she LOVEs eating!).

As the Noodle has grown, he has ramped up our pace of life into the fast lane!

Twinkle’s development has always meandered sedately along, always forwards but at her own pace giving us time to get used to new things, however the little dude (now 16 months) seems to have hurtled full pelt the whole way!!!

Life is very different now and it’s refreshing for us all having a funny, happy, cheeky, adventurous and communicative little person in the house.

A little bittersweet when he began to reach and pass some of the developmental milestones that Twinkle has struggled to get to.

Lovely too of course that he is not having to struggle in the same way and, of course it’s hard to pinpoint directly as there are so many factors stimulating development, I really think having Noodle around has made a huge difference for Twinkle’s development too – he interacts with her constantly, at the same level as her, moves around in a similar way, plays with her or parallel to her – no matter how hard you try as a grown up to encourage play/movement/communication, there’s nothing that can match another little person learning the same things!

Noodle is still so young that we’ve not had to address the issue of his sister being different.

Being the second child it’s all he’s ever known, so it’s just the way things are.

My nieces and nephews are beginning to be more curious about Twinkle’s abilities so I know that it’s only a matter of time before we get to that stage with him too.

I guess I’ll just have to play it by ear but I’m starting to gather any hints and tips people are able to pass on.

He’s a little bookworm so I think stories will be a great help – any recommendations would also be most welcome!

I do hope we can nurture an accepting little person.

We are trying to be as inclusive a family as possible from the beginning. Doing things together as much as we can, including Twinkle in activities that we do as a family and including the wee dude in Twinkle’s activities and therapies.

Twinkle being that little bit older and attending nursery part of the week, gives me some valuable one on one time with Noodle too, where we can connect with other little people of his age and get as wide an experience as possible for him.

Twinkle will be starting school in September, so I hope I can continue to strike a good balance of one on one time with me, socialisation and time spent with his sister.

When he is older I think it will be very important to maintain contact with support groups like SWAN UK and SIBS (www.sibs.org.uk), allowing us to meet up with other families and, more importantly, for Noodle to meet other siblings in other families a bit like ours!

The National Portage Association is “named after the town of Portage in Wisconsin, USA. It was developed there as a way of supporting parents in helping their children in their own homes” http://www.portage.org.uk/.

t is a charity that works closely with the county council community services and provide educational play therapy for children with additional needs.

They work with profiles and developmental checklists which feed into the journals used by early support services and educational settings, helping to identify additional needs, strengths and targets for future learning.

Our Home Visitor has been fantastic!

Of all the people we have met through early support services she is the one who has got to know Twinkle the best, partly because she has had such regular contact, but mostly because play therapy is fun!

She gets to see more of Twinkle’s developing personality than anyone else and bring out the giggles in her.

Another dimension has been that she is a parent of a child with additional needs herself and therefore has been in our shoes.

Of course this isn’t a pre-requisite for providing caring therapy to a child, but it really does make such a difference emotionally for me as a parent knowing that I am speaking to someone who really does understand a lot of the journey our family is taking.

Our Home Visitor has been a regular visitor and friendly face to the whole family.

Someone to answer questions about the often confusing early support, health and education system and the person who sorted out the gaps in support for Twinkle for us – the involvement of Visual Impairment team (much needed as Twinkle has cortical VI) and a referral for Music Therapy (which Twinkle loves and really brings her to life!).

The portage service in our area help to run weekly groups for children with additional needs at various children’s centres around the city. They have also been running an annual portage party!

We went to the party last year and it was great to meet lots of other families similar to ours and to be in an environment where we were all ‘normal’!

We met some lovely people who we have since kept in touch with (in real life and also found we were in the same online support forums – small ‘additional needs’ world!).

However, now that Twinkle has gone up to 15 hours at nursery we have come to the end of our entitlement to portage visits and we had to have a very emotional (for all of us!) sign off visit a few weeks ago.

My little baby is growing up and growing out of early support services ready to start school!

And we will really miss our regular visits from our lovely friend……I really hope we will manage to keep in touch!

We started out as a ‘normal’ new family and had all the ‘normal’ new baby stuff, including a high street baby carrier.

We lived in London at the time, so I quite quickly decided that ‘baby wearing’ was not only nice and snuggly for me and the baby, but so much more convenient for me than the pram for public transport around the city and for walking the dogs on the common.

One of Twinkle’s first ‘symptoms’ was developing reflux when she was still very small, so the baby carrier also became a useful tool, for holding her upright to help her digestion, and not just a means of getting around.

Despite being slim, she soon got too heavy for the carrier we had (it had no waist support), so I started baby carrier spotting and when I began googling them I found a whole new world I didn’t know existed!

From fully framed backpacks, through soft structured carriers, ring slings to more traditional wrapping with fabric!

So many options and lots of pretty colours and fabrics….wraps and carriers seem to be the new shoes and handbags in some households I think!

I have always been a bit daunted by tying a wrap (although I did, in the end, use a stretchy wrap for baby no 2), but I think by the time I was looking for a new carrier for Twinkle, wrapping wouldn’t have been right for her anyway.

I think wrapping (particularly for back carries) requires a degree of compliance and balance, even cooperation, from the little one which Twinkle couldn’t do (at 9 months, she wasn’t sitting unaided, and her hypotonia and hypermobility were beginning to become more apparent).

So after much googling and watching youtube tutorials, I was guided to investing in an SSC (soft structured carrier) – there are lots of fab brands out there, but I went for a Beco at the time.

I later learned of ‘sling meets’ and ‘sling libraries’ where I could have tried some out and got some experienced advice, however thankfully my online research held out and my SSC has been fab and I’m still using it for Twinkle’s little bro!

As Twinkle was growing out of this 2nd carrier, I thought that was probably it for our babywearing days, even although developmentally she could really have done with continuing.

I decided to do a bit of research into it anyway and was very pleasantly surprised to find that the ‘babywearing community’ is pretty open to carrying larger children of any ability.

Even when they can walk, all kids get tired and often want to be carried, so why not have a carrier or wrap to make it easier, rather than perching them on your hip or balancing them up on your shoulders.

I found there was a wealth of options to allow us to keep on carrying, and after some really helpful advice from some online SN forums, I went for both a ring sling (really useful for quick trips in and out of the car) and a pre-school SSC (a bigger version of what we already had), which is just perfect in size for our tall girl!

Twinkle is now 4 and still not walking (although she is beginning to take steps in her Firefly Upsee and her gait trainer!) and we now also have her 1-year-old little brother to factor into getting out and about!

Generally, Twinkle travels around in her SN buggy and I have little bro on my back in the smaller SSC.

However being able to continue the wearing experience for Twinkle has been just lovely, for various reasons:

 – It gives us some additional freedom as a family, to go on walks with the dogs, or into the city, that would be more tricky with the buggy;

– It gives Twinkle a different experience to that of being in the buggy, higher up for a different perspective on her environment, and allows her to experience things in the same way as her brother (that’s particularly nice for us at the moment as they are at a very similar development stage);

– Carrying is inevitable until/if we get to such a stage that we need to install a hoist/get a WAV, so having a carrier helps us with ‘manual handling’, spreading her weight and allowing me to maintain better posture;

– And last (but definitely not least!), it’s comforting to be carried, and lovely for mum and dad continue having those snuggly hugs as long as possible!

It’s all new to us and we are learning as we go along but my understanding is that Twinkle is a ‘sensory seeker’…..she loves sensory experiences!

However she doesn’t always understand how to use her senses to access things.

For example, her SPD results in cortical visual impairment, meaning that although her eyes can see she doesn’t always use them, doesn’t always process the information that her eyes are giving her and will sometimes revert to using her sense of hearing or touch instead – unless it’s something really worth using her eyes for!

Unfortunately finding purpose designed sensory facilities seems to be a tricky one (disappointing, as sensor play is inclusive for all abilities, especially toddlers and younger pre-schoolers, but it seems to be a rare beast and generally limited to the realm of special needs), so we have had to find our own everyday fun!

This can be as simple as just going outside!

Twinkle LOVES being outside, just outside, anywhere and in any weather! I suppose the natural light, temperatures, smells, sights and sounds are just so different to being indoors, and so open.

She loves looking up at the trees and seeing the contrast with the sky and hearing the wind in the branches, feeling the wind and sun, and even rain, on her face.

It just lights her up!

So our favourite free, local entertainment is to take a walk to our (huge!) local garden centre.

This provides us with year round entertainment. In the summer, there are all the flowers and plants, sights, colours and scents and in the winter they put on a huge Christmas display with lights and jingly music galore!

There is also a pet corner and aquarium shop.

The rabbits and guinea pigs Twinkle can take or leave, but the fish are THE thing!

She loves them!

Partly the bright colours and movement, but I think really it’s the bubbles and the reflections of the light on the water in the big fish tank that grabs her attention.

I have toyed with getting a fish tank for home, but maintenance and cleaning it puts me off….plus why have our own when we can come to the garden centre, see the fish and then treat ourselves in the centre’s café with a huge piece of cake!?