Wednesday, 27 May 2015

How to have an Autism Friendly Birthday Party...

This month was DS's birthday!
I love the time of year of his birthday  - May is such a beautiful month and brings the promise of Spring.
My own birthday is exactly 3 weeks after Christmas and if I'm honest, I've never particularly enjoyed it.
The weather is cold, bitter and often frosty or icy. For many birthdays, I've been full of cold and everyone is skint after Christmas and New Year.
I remember many a birthday walking home from school with a scarf wrapped around my face and it going dark. It's become something of a running joke between me and my Mum of me asking 'why on earth did you choose to have a baby in January'? She gives me a different humorous reply everytime I ask her! :)

So with all this in mind, I was determined that when I come to have a baby of my own that he/she would be born during a nice time of the year.

So DS was born during May. I had aimed for May/June so was very happy with that.
It means that his birthday is usually a sunny day and warm enough to play outside with at least one of his presents being an outside or garden toy :)

This year I decided to try something different. I decided to host a birthday party at home but not just any party. This was going to be an autism/DS friendly party.

So I got to work with booking a huge garden bouncy castle, I ordered several food platters, balloons and bought the cake.........and didn't invite any children.

That's right.

No children.

It was a child-free birthday party.

Reason: Well DS is noise sensitive and struggles to tolerate crowds. Children of course produce noise. Screaming, shouting, laughter, squeals etc. All stuff that must feel like nails on a chalkboard to him :(

Another thing is that the only children that DS knows are his classmates and in DS's mind, they belong to school only and certainly not in his home.
You see to him, people have their place. There are clear lines to where people belong.
For example, Mum belongs at home, teacher and children belong to school.
He does not expect to go into school one day and for me to teach him just as much as he doesn't expect to come home to his teacher having tea in our house or the children running around his garden!
So classmates are a no too.

Instead the guest list consist of just a few of his favourite adult family members and he loved every minute of it.

The only child that did attend was my partner's son C who is a similar age to DS.

C has pretty much grown up with DS and has been around him for a good number of years now. He has a good understanding of him, knows when to interact with him and knows when he is best just getting out of his way! DS enjoys seeing him and seemed pleased when C arrived with his Dad :)

The day was sunny and went tremendously well! :)

A few days before the party, I bought the birthday cake but as I was unloading the shopping from the car (with the cake) DS spotted it and wanted it there and then.
I gave it to him and he did this........who said that you have to eat your birthday cake to enjoy it eh? :) :)

He peeled off the icing and then squished the sponge through his fingers like play-doh.
The sensory enjoyment he was getting out of it was lovely to watch and I let him play with it to his little heart's delight :)

So for the party, I bought another cake and expected him to do the same thing (which would of been absolutely fine) but he didn't.

So this party wasn't your usual children's birthday party but that doesn't matter.
What does matter was that it was enjoyable to DS and he was the key focus here.

We are not a 'normal' family and to be honest, I wouldn't want us to be.
DS had an awesome time at his party and a fab sensory experience squishing and squashing his birthday cake. It was his cake so he was free to do with it as he wished :)

Would I do it again? Definitely! All our parties are going to be like this now obviously depending on DS's needs.

But also, myself and the family thoroughly enjoyed it too. I was relaxed and happy as I knew that my Superstar boy was.

My tips for organising an Autism Friendly party are:

*First off, shake your head of any thoughts of a conventional birthday party or what a child's birthday party 'should look like'. Model your party to whatever your child will enjoy even if it means that it looks nothing like a party! It doesn't matter but your child enjoying the day and experiencing their birthday day being fab is!

*Shape the day to the needs of the child (as much as possible) including food, guests etc..

*Create a room or corner for the child to go and have a break or chill out if needed. Make sure siblings know that is a no go area even if it's just for today.

*Only invite family members that the child has a good relationship with. I have no family members that unintentionally tease or wind DS up. If I did then I simply wouldn't of invited them.

*Accept offers of help. I didn't faff with making sandwiches and popping mini sausage rolls in the oven. I ordered several party platters so I could relax and spend time talking to DS about who was coming and what would be happening. If you decide not to do this option then accept offers of help from family and friends to get things ready.

*Relax. Our children are like emotional sponges. They soak up any emotion we are experiencing or feeling. So if Mum is stressed and anxious then it's likely Junior is going to pick up on it and get stressed and anxious. Stay cool, calm and collected then so will our little birthday boy/girl :)

*After the party, make sure the rest of the day and evening is very low key and stimuli.
Your child is likely to have taken on a lot during the party and may be grateful of having a low noise and stimulation rest of the day. After DS's party we kept the TV and radio off and made sure we kept our voices lowish.

*Lastly, enjoy! Enjoy the day celebrating and playing with your child. As DS is my only child, I mentally mark the day of having been a Mum for X amount of years. It's a lovely feeling.

Hope this gives you some ideas or food for thought when planning and organising your own little Superstar's birthday parties :)

Saturday, 9 May 2015

A&E Play Day - Yes really!!

A while ago, DS gradually became unwell.
He went off his food and became 'just not himself'
Thinking he may of been coming down with a virus or something, I kept a close eye on him and checked we had plenty of Calpol in the medicine cupboard in case it was needed in the next coming days.

The day after, DS was distressed. He was crying and looked angry.
Watching him closely at how he was behaving, I came to the conclusion that he was in pain.

I quickly called 111 for advice and possibly a ambulance as by now he was screaming with pain :(
I was immediately transferred to a nurse who asked me to place my fingers on a certain part of DS tummy which I did. He then screamed even more and crunched over in agony!

I remember screaming down the phone what had happened and how much more pain he was in.
The nurse told me to get him to hospital straightaway as he was showing signs of appendicitis.

Within 1 minute DS was bundled in the car with my Mum in the back with him and I raced the 40 minutes drive to the hospital, no doubt breaking every speed limit along the way! (oops!)

Mum texted Daddy on the way who said that he would be waiting for us when we got there.

Arriving in the hospital, I rushed up to the desk to check him in whilst Daddy cuddled DS and reassured him. We were then shown to a private room and waited sometime to come and examine a very distressed DS.

To cut a long story short, 4 hours later we were still in that room and no-one had been to look at DS.
I was probably seen as a 'lunatic Mother' as I was forever marching up to the desk and asking/demanding/raising my voice at why he hasn't been seen. The answers I kept getting were 'he is next' (he was next for 3 hours but never got seen) and 'we're really busy'

Now I generally admire the hardwork that NHS workers do but I have to say on this occasion, my son was let down by the staff at this hospital.

In the end, we ended up walking out as it was now more the waiting in a small room that was causing DS to be so upset and distressed (I communicated this to them) and we left at 11.30pm with a sleepy DS.

To say I was livid at how ill we had been treated in there would be the understatement of the year!
I think I breathed out fire on the journey back home.
I put DS to bed and then sat at the kitchen table with a cup of tea furious at how they had massively failed DS and how I wasn't going to let this go!

The next day DS still wasn't right so we took him to a Children's hospital which was about a hours drive away. They were fantastic and he was examined within a hour of us arriving :) He was actually examined in a sensory room there which I thought was great!
The Doctor was marvellous, listened to me and as I knew him best told me to tell her if he found anything uncomfortable as she examined him.
I'm really big on giving feedback, so I gave glowing feedback on this visit.
Thankfully serious stuff was ruled out for DS which was a mega relief for us.

Now that I knew DS was okay, I turned my attention to the previous hospital.
I put in a major complaint and requested a meeting.
The thought that another autistic child could possibly go through what my son had gone through filled me with dread and I knew that I couldn't just leave that to happen without even having attempted to do something about it!

The meeting day came. I met with the head of A&E and the head of the PALS.
The meeting went much better than anticpated as both persons were lovely, warm and concerned and yes it was admitted that yes my son had been failed that night.
So I asked how could they assure that something like this wouldn't happen again and I was quite satisfied with the answer.
Another point I raised was that I was concerned that my son would have a negative association with the hospital whereas before this he was fine at coming in.
It was suggested that DS came into the department for a 'fun visit' and a walk around the whole department (where possible of course). I thought this was excellent idea and agreed to it.

I was also asked if I would help the staff make the department autism friendly which I'm only too happy to do :)

Taking DS in again was easy, he seemed to be okay walking through the same doors we did that night when he was in agony which I was really pleased about.

We we're met by the lovely heads of departments and we walked through the bays, DS tried out some of the beds and pressed lots of buttons on machines! :) He loved it!

He was even given his favourite chocolate by a doctor and taken to a bay with lots of toys and a bubble tube!

The only place we couldn't visit was resus because someone was in there.
We met lots of the staff and I asked lots of questions as well as educating them about DS and some common things about children with autism which they seemed to take on board :)

Eventually, it was time to go so we said our goodbye and lots of thank you from me and off we went with a happy boy who I'm confident to say has no reservations about visiting hospitals in the future :)