I’m actually called Sarah. I have a first name and a surname, but I don’t seem to use them any more; many people I come in to contact don’t use them either.

I can remember so clearly the first time this happened. Heidi was a couple of days old, in NICU, and Steve and I were trying to catch a little bit of sleep in the parents’ room.

My mobile rang, I answered it.

“Is that Heidi’s Mum?”

Who? I actually thought they had got the wrong number.

Maybe it was just the tiredness, or the blur from having a baby in special care, but I didn’t relate to this new title at all.

I was kind of in shock from this call for quite a while; going over it, wondering if I should have felt immediately that of course I was a mum, Heidi’s mum, and then feeling incredibly guilty that I didn’t.*

Over the following days and weeks, more people said it, “Heidi’s Mum”, or sometimes just, “Mum”, – doctors, nurses, health visitors…this way of addressing me felt so alien, and to begin with I used to reply, “Yes, Sarah”, in the hope that they would use my name.

They didn’t, and so, “Heidi’s Mum”, I became.

Now, I fully understand that the professionals must see so many parents and carers, and it’s probably impossible to get to know and remember all their names. I get that.

Maybe though it would be nice just to be asked what you’re called, or even be told, “So sorry, I’ve forgotten your name, but don’t want to just say mum!”.

I wouldn’t be offended if they forgot my name, or got it wrong, and to be honest I would probably answer to pretty much anything!

I am now completely guilty of using, “Heidi’s mum”, as my go-to phrase if I need to introduce myself, or explain who I am.

Everyone knows Heidi (even people we don’t know seem to know her, I’m guessing from the blogs), and I now feel a sense of security from being her mum.

She’s the biggest part of my life.

Yes, I can remember what things were like before Heidi, when I wasn’t a mum, but I don’t want to think of life without her.

It may sound strange, but I think I am more confident as, “Heidi’s Mum”, than I am as just, “Sarah”.

I will stand my ground for things I believe in, and not worry so much about upsetting people (ok, I still do worry, but much less than I used to!) if I am fighting for something Heidi needs.

I am her biggest advocate, her voice, her therapist, her playpal, her friend, her mum. Heidi’s mum, and I’m more than happy with that.

*Just to note, it was my mum (Sarah’s Mum!) who reassured me that feeling like this once you’ve had a baby is completely normal. If you’re feeling like that right now, please talk to someone.

Those bloomin’ hormones, tiredness, and worry can do so much to our heads, but there is help out there so please grab it if needed.

As a special needs parent, I have experienced the goodness of strangers in ways that have helped strengthen my faith in humanity.

You never truly know what a person is struggling with or what is going on in their life.

No matter how small a gesture may be, it can go a long way and affect a person’s day in very big ways.

Once after my daughter’s physical therapy session, we pulled into a fast food restaurant for a treat.  My twelve year old son was with us and he was eager to enjoy his favorite ice cream and chicken nuggets.

As we got out of the car, I popped the trunk to get my daughter’s wheelchair out; he opened her car door and then immediately came to my aid.

As I lugged the bulky, heavy seat and frame out of the car, he helped me put the chair together.  After I lifted her out of the car seat and placed her in her chair, he helped me get her safely buckled in.

As he always does, he ran ahead of me and opened the door to the restaurant and held it open for me to get her inside.

After I ordered our snacks I heard a voice beside me say, “This is on me.”

I was surprised and confused when the lady in line beside me looked at me with a bright smile on her face.

As this complete stranger explained to how she had watched my son being so helpful to me and to his little sister in the parking lot, tears ran down her cheeks, and then mine.

She went on to tell my son that she was super proud of him for being such a great big brother, and he thanked her with a very polite handshake.

I asked her if I could repay her for her kindness and she told me that I already had.  She would only accept our hugs, smiles and handshakes.

She proceeded to tell me that she had received blessings in her life from others, and it was her pleasure to do something for us.

Since that day, her kindness has remained with me.

There have been moments since where it’s made my heart happy to pay for another person’s toll at the toll booth or purchase the coffee of a stranger behind me in line at Starbucks.

Even offering a kind word or a smile can make such an impact.

It may not be much, but can you imagine what our world would be like if we ALL extended some courtesy to strangers, from time to time?

I am grateful to the lady we met in the restaurant that day, for acknowledging my son’s manners and helpfulness, for acknowledging our struggle, and for showing us how sharing a bit of good will can transform someone’s day, for the better.

Recently I was speaking to another practitioner about a young person with a disability, explaining an incident that had happened to the young person and what I felt would help them in the future.

The reply I received was:

Well they’ve got to learn to live in the real world!

Have you ever talked about your child to another person or practitioner and taken that risk to describe their needs as you know them to be only to be met with ‘yes but that’s not the ‘real world’ is it!

Or – You can’t expect people to understand/accommodate/make allowances for that!

Ooh I’m not sure…the other children/adults won’t like it!

It won’t be fair on the others!

These are all things I have heard from other practitioners when working with children with disabilities and I’m sure many of you have heard them too.

Hearing something like that can feel like a real blow when we take a risk and ask for what our child needs.

Of course there have been times when someone does ‘get it’ and they go that extra mile to help. What a difference that makes!

But the reality is often very different!

So why does it have to be so difficult? –

Much of it is down to lack of understanding or an unconscious or subconscious prejudice or assumption – People with disabilities don’t want or won’t enjoy the same opportunities as their non-disabled peers and therefore they won’t be considered in the same way.

Yes we have made progress but there is still a long long way to go! (Thankfully, we have the Equality act in the UK – although not even this is adhered to adequately, sadly.)

Which of course is complete nonsense!

So what can we do? We keep on keeping on, that’s what!

We take the stance that this isn’t about us, it’s about them and what they need to do differently – and I am not just talking about the really big stuff here such as accessibility and equality but the small things that also make a difference.

Being honest about expectations. Trying to reach a compromise to enable a child with a disability to access a school trip rather than making them feel like a risk assessment.

If you don’t feel you can meet a disabled child’s needs at a birthday party then ask the parents what you need to do to make the party accessible, the smaller stuff is as important as the big stuff.

Think what you can do rather than what you can’t do.

By listening to each other and offering unconditional acceptance and positive regard for what you are being told is a much more effective way forward.

Too often people can tell you why they don’t have to do something rather than looking at what they can do to make a difference.

To say OK what can we do to help this situation, what will make a difference here has the potential to make such a difference to people’s lives.

To understand that whilst it might not be your experience of the ‘real world’ – it is theirs. And that their experience is as valid as yours.

Life is often about perspectives and how we look at it, so try looking at it from another angle!

The other night, I was watching telly.

I can’t remember what the programme was, but part of it, or it may even have been an advert, showed a group of teenagers (all very slim and attractive) having a whale of a time at a beach party in sun.

In my head I presumed that none of them had a care in the world, that they were the happiest they could be, and that life for them was a breeze.

It was at that point that I had the thought. I wanted to go clubbing in Ibiza!

Now, just to put this in to context – never, ever in my life have I wanted to go clubbing. It’s just not me.

It’s certainly not me now that I am fast approaching my 40th year, a special needs mum and most definitely not a member of the “slim and attractive” category!

I’ve enjoyed nights out with friends (pre-baby), but these were at at cheesy local pubs or bars, and if I’m brutally honest with you, I felt much more at home when these nights out turned to nights in and friends (armed with wine or prosecco of course) would come round to the house.

So why, you may ask, did I all of a sudden want to up sticks and be a raver?

I think it’s because the girls on the telly looked so carefree, a stark reminder to the responsibilities that I now have, not only as a mum, but as a mum to a little one with complex needs.

As a special needs family, we can’t be spontaneous (this isn’t necessarily a problem for me – I’ve always been twitchy if there isn’t a plan!).

We can’t just decide to pack a bag, hop on a plane, and head to the beach. We can’t take out regular travel insurance (the list of medical needs to declare is pretty lengthy).

We can’t hire a typical family car in a foreign resort (has to be wheelchair accessible).

We can’t be away for too long in case we run out of meds. We can’t venture away without knowing where the nearest hospital is, just in case.

You get the idea?

We are very fortunate though in that we can go away in this country, and have a caravan that can be loaded up with suction catheters, feed bags, trachi supplies, sats monitor and so on.

I know this in itself wouldn’t be possible for some special needs families, so I am very grateful that its do-able for us at the mo.

The lead-up to a holiday (and by holiday, I mean weekend break within about an hour’s drive from home) for us involves lists, lists and more lists.

I need to feel reassured that we have planned for every eventuality – hot weather (slightly optimistic for the UK!), cold weather, being unwell, several changes of clothes in case of spillages – although inevitably I usually manage to forget something.

As long as it’s something I can buy in a supermarket it’s not too bad – if only Tesco’s started doing a range of SN supplies hey?!

There are of course advantages of holidaying in this country; no need to remember passports, or try and get by in a different language; no queuing to get through security at the airport or squeezing your knees into a cramped seat on an aeroplane; no immunisations or jetlag (although for many SN parents that may not make a difference, sleep is so rare anyway!).

The biggest plus is there are so many beautiful places to visit, with more and more being adapted to meet the needs of everyone.

The Changing Places campaign is doing a great job in promoting the need for accessible facilities and thankfully lots of attractions seem to be realising how important these are for people.

Let’s hope this grows even further.

Having had a bit of time to reflect, I can safely say that, for the time being at least, I’ll put my Ibiza idea on hold.

You never know though…one day…just maybe…!