Since then, my obsessive little mind has looped this over and over in my head and forced me to apply it to many scenarios relevant to our situation.

For example, not looking at a child the same age as mine who happens to be neurologically typical and playing the ‘This is how it would have been’ game.

This is not conducive to positive thoughts and as soon as my mind starts to do the whole ‘Wow, that child is saying words’ ‘Wow that child is toilet trained’ and so on I tell myself ‘NO’.

I also try not to start thinking of silly cliches some professionals throw out there like ‘inchstones not milestones’ and so on.

But sometimes it is really hard not to compare.

It can be damaging, it is not productive, it changes nothing.

Lately all I seem to be able to do is compare Amy’s childhood to mine.

From a young age I remember loving picking blackberries with my grandma, watching films and cuddling up with my mum and dad, eating tasty meals around the table and making deals on how much more I had to eat before I could have a dessert.

It does upset me thinking I can’t just ‘set her free’ on a park to run round and explore.

In a lot of ways I have tried to become more like my younger, more fun self to help show her to be inquisitive and explore.

But it’s about finding a way to make her childhood memorable, and in a good way.

Not peppered with frustration, tantrums, therapies, physical pain and so on.

I want her to know how important her happiness is to us.

It is literally my reason for being, my calling in life now.

We have spent a lot of time lately visiting soft play centres. We have entered a phase in Amy’s development whereby we cannot stay in any one place for a very long time at all.

I voiced this as a concern at today’s neurology appointment and was assured that this is due to short attention span and various other things.

It would seem there is no way to medicate these irritable tantrums that occur after the toy she so previously loved, has after 10 seconds…become absolutely unbearable and must vanish from sight instantly.

We did however get a prescription for some other medications which we will help with movement issues and thus hopefully end the self perpetuating problem of anger turning into uncontrolled movements and this causing further distress.

Anyway, I digress.

The reason for the soft play centre visits (and also countless garden centre or supermarket visits) is that they are a really big place, there is a lot to see and lots of different areas to go to before we have to leave and calm down in the car.

The first time I went I got there a lot earlier than my friend who had got held up in traffic.

Eager to not go in the sensory room until my friend arrived, I cautiously paced around the venue trying to familiarise myself with things Amy might entertain.

I found an area that said “toddlers 0-3” and I thought “ah yes, 2 years 9 months. Perfect age range for us. Yep let’s go and see.”

I disconnected her pump feed, unfastened her from her wheelchair.

She instantly extends and slides out of the seat. I anticipate this and catch her.

She is stiff like a plank of wood. I jiggle her gently and sing to calm her down.

Constant music is needed or she gets dystonic and sad.

I sang the right song… she loosened up and could now take in her surroundings.

I entered toddlerland with difficulty, opening the gate, unable to see if there were any children at my feet, my child casually squeezing at my eyeball… the usual.

My heart started to race as I started to realise that literally NOTHING in this room was suitable for her.

Feeling a bit alone and overwhelmed I felt myself get all hot. “Don’t cry” I kept telling myself.

How silly I am at times.

The other parents started to look at me as if to say “Why is she just stood there holding her child? Why doesn’t she do something?”

I could feel them all trying to predict my next move. Overwhelmed I made for the gate and left toddlerland.

Feeling deflated I made my way for the table and chairs. Carrying Amy and dragging the wheelchair behind me I made a hasty retreat.

I would sit and hold her and sing to her until my friend arrives and then we can all hide in the sensory room and feel normal again.

Sitting at the table did not go down well with Amy who had by this point clearly seen the other children going on slides and running round.

I decided to hell with it, I will go to the sensory room.

Just as I went to stand up a member of staff approached me. “We actually have a sensory room over there… she might like it?”

It was then that I realised we had stood out like sore thumbs.

The staff member had seen me pacing around confused and panicked trying to find a place to fit in and for Amy to be happy in.

I was both grateful and mortified in equal measure.

It was very kind of her to notice that our trip to this place wasn’t going to be like it was for most other people there. She had figured this out and looked for a way to make this a pleasant experience.

The rest of the day went well. Amy loved the lights. (Only with toys playing music and with me bouncing her around etc… a sensory room is a treat but not without noise for her!)

We have since re-visited several times, even just to pass an hour or so.

We went to a bigger one recently and it was incredible. She had an amazing time.

Admittedly it is a struggle…I turn into the militant special needs mum who wants her child to access what everyone else does.

I get her on slides, in high up ball pits – the lot.

This time next year that may not be an option, so I have to do it all now so I know I have done my best. I just hope she has the cognition to understand mummy WANTS to do these things, but sometimes can’t.

It isn’t anyone’s fault. She’s just a big heavy girl and constant in her demands!

It is completely worth it for that smile of hers. Anyone who meets her is totally entranced by her amazing smile.

I sincerely hope that one day places like this set aside more consideration for children like ours.

Why not have slides with a hoisting system so they can be lifted to the top? I know there are some places out there but they are either too expensive or too far away.

I recently found out a local park has a wheelchair roundabout and I can’t wait to visit and see what she thinks.