Social Understanding and Hidden Disabilities

We’ve just come back from a lovely holiday abroad in Ibiza for the week.

I feel we’re very lucky to have finally cracked holidays and we make them work. I’ve written previous blogs about holidays with plenty of tips so feel free to take a peek back!

This time around, I did the normal – looking for a small boutique hotel or a villa. We’ve done the big hotels and unless its Florida where we literally just use the hotel to sleep, a big hotel is a no go! Way too busy, too much noise and way too many children for my boy’s ears. One big cause for a meltdown is another child crying, no matter how many times I have explained that a child can only communicate by crying, he still won’t have any of it and it’s still a noise that goes right through him. All I can do at the time is reassure him, distract and remain calm.

Staying in small boutique hotels ain’t the cheapest of accommodation, and even then it’s not guaranteed that things will be perfect. I remember last year staying in a very pricey little farmhouse in Ibiza, with my boy stampeding around the grounds because we wanted to put sun cream on his face. What appeared to others as just a spoilt boy running his parents ragged, really wasn’t. Our boy didn’t like any mention of the word cream. Ice cream, creamy pasta, anything that had the word cream in it was just a no !!!  How could we expect anyone else to understand this? We couldn’t and just had to let our boy finish his stampede. With the look of other guests staring at us with disgust, which appears to them that we have an uncontrollable child having a strop, it’s not a nice feeling. We save hard and work hard all year round like all the other guests to come somewhere quiet, peaceful and tranquil but at that moment in time I feel we are ruining it for others. I know if I go chasing after him it is only going to make the whole situation worse, so then we all set off in different directions like we are playing hide and seek. Maybe all the other guests just think that it’s one big family game now? Whilst they all sit back in their sun loungers and sip cocktails watching the strange British family pace around the hotel grounds like a scene from Benny Hill! I have my husband in one direction hiding behind a bush, I’m hiding behind a wall and his brother is at the door of our room. One of us catches the boy and he’s had time to storm and reflect whilst on his stampede around the building which allows us to put a bit of cream on him in the directed places that he agrees to. Jackpot …. this is only the start of the day.

This year we tried Air BnB, which was half the cost of the boutique hotels and we had the whole place to ourselves. I have to say it was the best decision, my boy could be whoever he wanted to be, without the added pressure of others glaring or ruining other peoples space and the extra pressure of us keeping the peace was gone.

I sense deep down whenever my child meets someone that there may be a barrier. I used to feel the need to explain and tell the waiter, the shop keeper, the taxi driver or whoever we came in contact with that my son has Aspergers. However, I also felt like it was unfair to explain to everyone, especially in front of him. How would I like to be labelled every time we came in contact with a different person that we didn’t know? I would just want to be introduced by my name, not the girl that had Aspergers, did everyone really need to know? We are good parents and well mannered, most parents would wish for their child to follow, but when faced with so many different social difficulties it’s hard. This for me is when my boys Aspergers stands out the most.

We had a wonderful day on holiday when we went out to sea on paddle boards. Inside me I wanted to tell the host that my child has a diagnosis, but figured maybe I don’t have to? We rocked up to the beach and my boy was offered a life vest, no one else was wearing a life vest, so immediately he began to feel targeted. I explained that it was my wish, mummy would have a good time and feel better knowing you’re safe. Of course, it’s something that mummy wants him to do and this is seen as a demand from mummy. He is starting to get angry and his face has changed from looking forward to an activity to frowning and pulling at the vest shouting that it’s too tight (it was a perfect fit). Dad pulls a fast one and tells boy that he can take it off when he is out at sea if it feels too uncomfortable, with this choice he is happy again. We work together well as parents when one is struggling the other can always win side and turn it round luckily. I’m not saying it works every time, sometimes we just look at each other with a huge sigh and shrug our shoulders, but this time one of us got it right.

We get out to sea and the guide shouts over to my boy “Smile I will take your picture!” For one this is a complete stranger, for two he is raising his voice at me have I done something wrong? And last of all, he is demanding that I smile! The photo is between a smile and I am not going to do as you say mode although I can tell he is happy paddling.

We got no more photos taken of the boy by the guides that day. I wonder if they thought he was being too grumpy, they didn’t understand or know. I am not slating the company because in the end it all worked out and one of the guides actually spent some time chatting with him and supporting him. My paddleboard was at this point going in a completely different direction and all I could hope for was that my boy was happy, I managed to swing my board his way and noticed him chatting and laughing! Phew relief.

The next challenge seems to be when eating out back home, We know where the safe places are to go, where the boy can just be a boy and doesn’t get bothered.  We’ve had a few occasions when little incidents happen, especially in the Italian cafes. The Italians seem bubbly, very friendly and love children. We’ve tried to explain to our boy how some people are friendly and like children, they only touch your back as a nice gesture, they’re just trying to be friendly but he still sees it as very black and white. They shouldn’t touch me I am sensitive to touch, I don’t like it. I am also sure that high levels of restraining by adults in the past holds a little trauma which I am hoping in time will pass. Another touch on the back in his eyes is a throwback to being led somewhere, this leaves him not in control and the feel of someone else controlling him.

On our last day before the flight home, we decided to try out a lovely restaurant in the harbour, a small place with about 8 tables in total. Perfect we thought not so noisy! On arrival we were greeted by a lovely sweet lady who flung her arms around my husband and kissed each cheek, my husband also has a rule for personal space so it came as a bit of a shock to him, although I’m quite the opposite. I will accept a hug and a kiss from anyone!! Haha, but I knew what was to come, my boy would either snarl or growl at her, he sneaked past below my legs and sat at the table quickly and buried his head into his Nintendo Switch. As we were sat at the table again the lady tried to make contact with my boy, it seems the more he tries to disappear the more they seem to try and make contact with him. I’m sat trying to make the conversation come towards me to take the pressure off him, but our boy is still snarling. As we leave the growl on my boys face has still not put the lady off and yet again she still tries to make contact and give us all a hug goodbye. My son darts past my legs and makes a run for the door, then sadly I see the sweet Italian lady pull a face to insinuate that my child is being rude or grumpy.  Immediately, I thought she thinks he is bad mannered, she hasn’t a clue that he is sensitive to touch and has difficulty in understanding social cues and it makes me sad to think that people may see him as just a spoilt or rude child. I must stop worrying about what others think. I honestly don’t think I would have understood either if I hadn’t raised a child with Asperger’s.

To raise a child with a hidden disability opens your eyes to a completely different world. Maybe I was pretty ignorant to it all before I had my child. My son teaches me each day how he sees the world and how he adapts to his world. His wonderful ways have taught me acceptance of others that are struggling. My boy didn’t need to be taught this, he was born with this gift. If he sees a child being angry or frustrated he doesn’t laugh. At nearly nine years old he knows they are struggling with something and this is why they behave that way. If I had left him in the mainstream environment where the children were whispering and sniggering behind his back he may not have learnt to accept those that are different and that being different is completely ok.

2019-06-08T21:12:36+00:00

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