I had friends I could ask advice on all aspects of parenting, nappy rash, bottles and sleeping etc.

I had a whole social web where if I had a question I knew where to turn.

Even with my son who has autism quite a few people either have a child with ASD or a family member with ASD. So again, I had so many places to turn to discuss my son.

I had health visitors and groups to support me in my journey and I could pass on my advice when needed as well.

Then I was pregnant with my 4th baby.

To start with the same social circles worked. Discussing scans, discussing what pushchair and highchair we were getting.

Then my baby girl was born and within a couple of months, I noticed people started to stop asking about my baby’s development, they stopped saying what their babies were up to, they stopped discussing what toys and groups they were attending.

I started to realise people in baby groups would give me the sympathetic look when their child was rolling or started to sit, while my baby girl just laid there.

It was so isolating. I did still have a couple of people, do not get me wrong, but my whole spider web of help, support and friendship had gone.

I know that people just didn’t know what to say, they didn’t want to upset me or make it seem like they were bragging but I just felt so alone.

I had lost my little circle of closeness, as people thought I had too much on to help them.

They felt like they couldn’t ask me about the fact their baby still hasn’t sat up at 6 months as my baby hadn’t even rolled.

I then started to feel lost, as the appointments got on top of me, when adaptations and different therapies were being discussed.

I didn’t know where to turn, I have an amazing health visitor but she isn’t a ‘friend’ as such.

I didn’t have anyone to go ‘fancy a trip to the coffee house, I need your advice on whether we should start hydrotherapy’.

I just felt like I was treading water and barely keeping my head above the water.

Then I started to google online forums, online help and communities and I suddenly found parents on the same journey, either at the same point in the journey or years down the line.

I found parents who are undiagnosed like us, where we can inbox and discuss how worried we are, or our little achievements.

I found parents with a known condition who just needed a rant at the world as they had encountered strangers who had commented harshly on their children.

I found forums where you could discuss different therapies and different equipment.

I haven’t met anyone face to face but knowing they are there at the end of the internet feels amazing.

I am starting to find my way, I am starting to get my advice web back.

I am finding new people and learning new stories and it is amazing experience that the parents of disability just join forces, are so friendly and are so welcoming.

I am starting to feel less isolated and more like I can take on the world again.

I am so thankful for the internet and for the communities out there, they really are a lifesaver.

Sadly, it was a blog about my son and the fear I have for when he gets older and his disability is not longer viewed as “cute”.

When life seems to take on a new path, and activities and inclusion is harder to find for him.

I have always been his advocate, and will continue to do so for the rest of my life.

I will always fight for him and everything we believe he deserves.

We are pretty blessed to have people in our corner who also believe the same and will fight for us.

For instance, we travel to Dallas, Texas every year because a great association holds a Walk N Roll’ for children and families with spina bifida.

We walk to raise awareness and come together as one for support and love. My family and I never fail to make the trip out, because locally it is not something we have had presented to us.

Because of this, I got to thinking. . I have always felt that I could and would want to do more for my community and families just like mine who feel there could be more for us.

Inclusion. With any help I can find, I am now working to hold a walk for awareness of all kinds.

For my community. My family.

I want people with even the rarest diagnosis or condition to feel that they have something out there for them as well.

I want to show the community that we are humans too.

My son isn’t just some cutie pie in a wheelchair, he is funny, shy, persistent and even sassy at times.

I want to offer the people of our community a chance to meet all families of any diagnosis/condition and hear our stories.

Bring awareness to them so we can come closer to one another.

We can see one another at the store and greet each other because we closed that gap.

The walk will allow families and members of the community to complete the walk together or allow someone to be able to walk it for members who may not be able to.

I have this vision. I have always had the passion.

Now with the help of my own home, I hope we can get this into action for our people and our community!

The children have so much energy and it’s the time of year when you can open the patio doors and watch as they run in and out the house, filling the atmosphere with laughter.

It is the time of year where the darkness has started to lift in emotions as well.

You don’t feel like so much is on your shoulders when the sun is out.

It is amazing what the sun can do.

It is the time of year when you can plan on going outside and going on nature walks and getting the bug spot book out.

It’s the time of year when I can get the picnic basket out and we can all sit and eat together even if it is on our lawn.

It is the time of year when the ice cream van comes down the road and the excited children dripping of pool water run with you to the ice cream van and ponder over which ice cream will be the best option.

It is just the time of year where being a parent really explodes into fun and laughter.

It however is also the time of year of no routine.

it is the time of year when my son is getting prepared to go up to a different class and he is started to get anxious.

It is the time of year when my other son is going to be starting school and my autistic son cannot quite understand why his little brother is going to be, not only in his school, but is going to be in his old classroom with his old teacher.

It is the time of year where my son is so anxious he is up all night, where because the sun is up, he must be up. Which means he is getting about 2 hours of sleep per night.

It is the time of year where the parks and beach, in fact everywhere, is busy, it’s noisy and it’s not comfortable for my son to walk around.

It is the time of year where I am researching as many alternative therapies I can to keep my son calm during these exciting school holidays.

I am researching aroma therapy, different breathing techniques and different sensory touch therapies which will keep my boy calm while out and about.

It is the time of year that fills me with such joy and yet at the same time with such dread.

Saying all that, I will always love this time of year as the sun gives me that energy boost I need to look after 2 children with disabilities.

It is the time of year to make memories and memories we shall make.

We begin planning our next trip almost as soon as we arrive home.

It helps overcome the deep depression I’m at risk of sinking in to on our arrival back to the UK.

You see, I love America.

In another life, I would live there.

But I don’t and probably never will because of William’s disability and his needs.

That makes me sad but I try to focus on the positives of living in the UK with a child with special needs.

America may be the land of freedom and opportunity. A country the rest of the world looks up to for its advances in technology, medicine and science.

However, on reflection as a special needs family we have lot to be thankful for here in the UK.

For a start getting out and about is made so much easier by simple things like doors, curbs and pavements.

Yes, you read it right – Doors, Pavements & Curbs!

Simple things I’d taken for granted until we began visiting the States on a regular basis.

The majority of stores here in the UK have automatic doors making manoeuvring a wheelchair so much easier. In Florida, most stores have air conditioning but it’s rare to find one with an automatic door.

Added to this the fact that very few people would think to hold open the door for anyone following behind, a lot of the time I find myself struggling to hold open a door and push a bulky, heavy wheelchair in to the stores.

Pavements (sidewalks in the US) are commonplace in the UK.

We’d be surprised if there wasn’t one but in the US they are very uncommon.

Almost everyone drives everywhere. Which is fine but sometimes with a wheelchair in tow it’s easier to walk to the next set of shops or mall rather than load up the car again.

Don’t get me started on crossing the road, you literally take your life in your hands trying to negotiate the drain gully, the raised curbs, the cars allowed to turn on red and still make it across a 6 lane highway in what feels like 10 seconds.

I’ve never been so thankful for our long leisurely pedestrian crossings and dropped curbs here in the UK.

I’ve read blogs written by American parents for a number of years about their disabled child being stared at when out and about in their local communities.

I must admit I never fully understood what these parents were writing about until we experienced it ourselves.

Of course, children in the UK stare some adults do too but only for a short period of time. In America, the staring was on another level.

Children and adults alike would stop right in front of William’s chair and stare, properly stare, open mouthed like they’d never seen ‘anything’ like it before.

I found it very uncomfortable and it makes me thankful for our more accepting local communities here in the UK, where a little boy in a wheelchair out with his family doesn’t cause quite such a commotion.

It feels strange for me to be thankful for the toilet provision in my home country.

I’m usually better known for complaining about the lack of accessible toilets that include bench and hoist equipment but in comparison to the US we are leaps and bounds ahead.

A common reason not to install Changing Places or Space to Change toilets in the UK is the lack of space in existing buildings. This is not an excuse in the US when everywhere is massive!

Come on the United States – it’s time to catch up.

An obvious benefit to living in the UK is of course the NHS – free at point of use for those who need it.

Yes, we complain about waiting lists, appointment times, equipment choice, therapy access but in comparison to the American system we are extremely fortunate.

And finally, many of our most popular family and visitor attractions have adopted carer or disability discounts.

They acknowledge the fact that a person with a disability can’t always access all that the venue has to offer or that the person may need one or two carers to accompany them on a visit.

Discounted entry prices or one carer goes free offers reflect this.

In our experience, this is not the case in the US, we recently paid £200 for William’s child pass to Universal Studios despite the fact he wasn’t able to access a single ride in his wheelchair.

So as I sit here pining for long sunny days, lounging by the pool and the Cheesecake Factory I do realise that there are benefits to being British.

In a world when your child comes first, single parents are often reminded that they should never be focusing on themselves in any capacity – including finding love again in their lives.

Even under the best of circumstances trying to merge two lives that already come with a host of experiences or what some people refer to as “baggage” can be trying and complicated.

Parenting a child with special needs is very demanding, emotionally challenging and exhausting.

Doing it alone simply increases the demands on singular parenting.

Pursuing personal happiness is not a selfish move, but rather a personal investment in replenishing your reserves and remembering your self-worth.

Susan Lake, is a mother to a child with special needs named Reiley.

She has been divorced for over two years legally, having split from her husband one year prior.

She has gone on a bunch of ‘meet and greets’ and what usually happens is she is asked more about her daughter’s condition, and then men start to squirm in their seats, or they don’t, and then she never hears from them again.

Susan says this happens “9 times out of 10.”

Susan only had one occasion where the guy didn’t have any issues with her child’s special needs, but after three dates there was not a love connection.

Susan had several dates with another gentleman, who met her daughter after thirty days of dating but it ended shortly thereafter.

Because of the care giving involved for her daughter, she is limited to places where she can meet single men in person, as such her primary way of meeting men has been from several online dating websites.

Susan expressed that she, “gets frustrated with men who can’t accept my life as it is, as a mom of a special needs child”.

Susan recognizes she has some greater challenges with dating but still wants to find someone to share her life with.

Reiley’s diagnosis looks scary on paper.

Susan says it is a lot for someone to take in when you’re explaining to someone who is not a part of the special needs world, that your kid has multiple things going on.

Reiley has two different medical devices implanted in her to help keep her thriving.

She gets sick so easily that she is home basically 24/7.

But she is also just a normal little girl who likes to play, have friends, loves music and she loves people.

Susan knows it is hard for men she is dating to get past the scary parts.

Susan also feels that many men in her age group wish to be, “empty nesters”, and don’t want to assume the care and responsibility of a child with special needs.

I asked Susan what her greatest advice would be to a single parent who has a child with special needs who wants to date.

Her advice: to be completely honest.

I’ve had friends not be completely up front, and it only caused heartache in the end for them.

If they can’t accept you, your complete package, they aren’t what you need in your life.

Eventually they say, someone will accept it all and love you and your child(ren).”

Although Susan has had challenges with dating men who are willing to accept her situation and her daughter’s medical conditions, she continues to remain hopeful that the right man is out there and continues to be open to all of her options.

If you are a special needs parent, who is dating, tell us your experiences!

I have never been divorced, nor married, but I can certainly concur that moving house is up there for me on most stressful thing ever.

Like many special needs families we have been on a long waiting list for adapted housing for quite some time.

We owned our house but it wasn’t adaptable, at all.

You could not move for equipment and tube feeding supplies.

We were awash in a sea of Amy’s essentials.

It was really, really hard.

Coming up and down the stairs with her was both dangerous and terrifying in equal measure.

Imagine my surprise to get a call from our local housing team to say that they had a bungalow ready for us to view?

It’s extraordinary how this came about.

The house is owned by a charity who up until now have only helped elderly and elderly disabled people.

They bought this house and approached housing asking who may be in need.

They asked if they were open to the idea of helping a family with a child with a disability.

They had never considered this before.

Like many people in a position to help – there isn’t enough awareness of the difficulties families like ours can face.

They accepted us!

We met a few times, did various bits of paperwork and pretty much overnight were lumbered with the prospect of moving house.

Something I expected to happen either in years and years time, or when my back finally gives in and we physically couldn’t continue.

I was astonished.

If this all works out well it will hopefully mean that the charity can help more families like ours.

So obviously I am doing all with in my remit to make this arrangement highly successful.

It has been a dream come true but also a deeply difficult time. We have to sell our old house in order to rent this one.

Our old house had become neglected. I mean, why spend loads of money maintaining a house that isn’t for you?

For at least a year now I had mentally checked out of our old house.

I would leave at every chance I had to escape the sad reality of the situation.

So the last few months has had us painting and doing tip runs etc. every time Amy is in school or respite.

It has been the most arduous, upsetting, physically and mentally draining time.

I know how grateful I am that we have this perfect new house but at the same time… working, buying a house, settling is sort of the done thing.

It has felt like a huge backwards step having to sell and then rent.

I am still now wrapping my head around it.

The amount of work that has gone into this move is staggering.

I remembered last time we moved saying, “We are NEVER doing this again.” I really mean it this time!!

If I did have another child that may present a problem, but that is a whole separate blog entry in itself.

The trust/charity have been incredible.

They aren’t just “landlords”, they care and want this place to work for us.

They are re-doing the drive way to improve safety and wheelchair accessibility, everywhere is decorated immaculately.

There is space for equipment.

We even now have a hoist!

Everything is so much easier.

We never could have afforded to buy a house like this.

I so badly empathise with people in our situation and I hope hard everyday that one of our close friends become number 1 on that housing list and are offered something that could transform their lives.

The house does not fix Cerebral Palsy, it doesn’t fix gastroparesis, it doesn’t fix the need for constant physiotherapy and everything else, but it makes all of it so much easier to manage.

I am still in a state of high stress, I will be until our old house is sold.

We have valuations booked in this week and all work on the house is finished.

The whole place has had a fresh coat of paint, a new carpet on the stairs, and my mum and dad were kind enough to pay for someone to come and overhaul the absolute jungle that was our garden.

Initially when we moved it felt like a huge novelty that wherever I am in the house… Amy can be with me.

It has quite literally brought us together as a family!

The house is all on one level and with ease we can move Amy room to room in her stander, seat, or even shower seat.

The house has a big concrete ramp that leads up to double patio doors so we can glide in with Amy’s beast of a wheelchair.

Her room is huge. Before she was in a little box room which ONLY fitted her hospital style bed.

All of her furniture lived in our room.

The more I look back at how we lived the more I wonder how long we could have carried on that way. I sincerely hope if you are reading this that you aren’t in that situation.

I also feel an element of guilt knowing that there are people out there without homes but I guess it is all relative, our struggles are our struggles and one cannot diminish another.

I just wish so much that everyone has warmth, shelter, a full tummy, love, but also space to breathe.

It’s hard enough sometimes living in a world where not everywhere is accessible.

But to live in your own home and it not be safe or accessible is a whole different ball game, and it isn’t fair.

I am now seeing every reason we bought that house in the first place.

We moved in there when I was pregnant.

In theory it was to be the best possible first home for a new family.

For an able bodied child it was perfect.

For storing standing frames, wheelchairs, physio benches and so on, it was a nightmare.

It quickly became a small nightmarish equipment warehouse.

Spending all that time in an empty shell of a home knowing how great it will be for the new people makes me both sad and happy.

I am so excited for the time when the house is sold, we have finished sorting this new house, all address changes and annoying paperwork and admin are done… and I can sit in our gorgeous new garden with a brew and say, “We made it”.

I want to have a family BBQ to thank everyone who has helped us during this turbulent time, I want to celebrate all the good stuff and think less about the bad.

I can’t wait to be better acquainted with our local village, and our local countryside walks.

There is so much to look forward to in life in this new chapter.