“Shall we get some food?” asked my husband as we walked out of a successful bowling family outing. We were all on a bit of a high from a family activity that had gone to plan. I looked up to see what he was referring to and saw a burger restaurant was in front of us, it was a takeaway, sit-down-if-you-want type of establishment. I assumed we would grab some food to eat on the go, as we have not sat down as a family in a restaurant for many years, longer than I can remember.
Rhys doesn’t do sitting down, waiting for food and social norms like eating out, are not part of his agenda. He will shuttle run up and down between the tables, and if the opportunity presents itself, he will run out an open door. There was once a situation where he didn’t want to sit at the table with us and decided to sit down at a table with an old couple who were on a quiet meal out. They didn’t seem to mind, but probably wondered what was wrong with us!
We find eating out stressful, and have therefore discounted it from family activities, resorting to a quick take away, picnic or lunch at home.
Until now. We decided to give it another try!
We took a chance, and as the food got ordered, I ushered our family into a booth. We all sat across the table from each other, Rhys included, and I thought to a picture I had seen earlier on my Facebook feed. I thought of families who regularly go out for food together, they snap a shot of them all around the table, conversing and enjoying a meal.
Here we were sitting, just like that family in the photo I had seen earlier.
Happy
We were however naturally contingency planning, knowing that our food could just be packed up and taken with us if something went wrong.
As we dished out the food, Rhys wouldn’t touch his hotdog, and pushed away the chips, but he sat there with us. He was happy to sit calmly and watch us eat, and look around at the sights of the restaurant. We all took our time eating our burgers and shared a strawberry milkshake, passing it around letting the paper straw get soggier with every sip (not the best decision!).
The environment was calm and stress free. A feeling of achievement washed over us. Our whole family out having a meal together, without one of us jumping up every two seconds to retrieve Rhys or calm him down.
As we sat, we took a photo. A photo that means more to our family than any other family’s weekly breakfast meal out. The first photo of us having a meal out together. The first photo ever.
Our first restaurant meal together!
We sat as a family eating a meal. The first meal together in a restaurant in forever.
There are no more words to describe the feeling of achievement and success. We are all moving forward in this scary world, and goals are limitless. Who knows what we will achieve next!
What are your experiences of eating out? Head to Facebook and let me know your story.
“Red” he replies, and I help him hand-over-hand to lift the red bowling ball from the rack. We lift it together onto the guide, and after a joint chant of “Ready, steady, go” Rhys pushes the ball forward. It makes a perfect direct line forward to the central pin securing a strike.
Rhys’ calves demonstrate their power as he springs up and down in excitement. The movement of the ball as it speeds down the lane provides the best entertainment for a little boy. Rhys takes his second go, which is just as exciting as the first, leaving a few pins standing this time around.
“Rhys, its Jessie’s turn” I state and hold his hand we stand on the side as he watches his sister choose her coloured sphere. I look around at the lights that overpower the room, alongside the noise as the balls hit the lane and pins. It is a nightmare experience for a boy who struggles with sensory processing, but that is where this parenting game is complex.
The momentum of balls and thrill of the smash, trump any of the loud noise and bright lights. Rhys is in his element, this activity is everything he has dreamed of. We continue to take our turns, Rhys choosing different colours, vocalising the one he wants as he eagerly lifts it into his grasp. After his two throws, he waits at the side watching his siblings take their turns.
We took a chance a few months ago, and tried bowling. On the surface we took a risk on something that made no sense on paper. The noise, the lights, the multi-sensory input. But Rhys loved it, and it has turned into a family adventure that has guaranteed success. The thing is that we would never have known if we had not given it a go. The opportunities it has presented for development are amazing – from colour association, to turn taking, mathematics and sensory processing.
Always try what you believe to be the impossible. Try it with the expectation that you may not even get through the main doors, and you may be surprised. Our kids amaze us, and throw us curve balls all the time. The rules are constantly being rewritten and we will only work it all out by pushing the boundaries.
Rhys’ hell turned out to be his ecstasy. A place we can go as a family and have fun, just like everyone else.
Head to my Facebook page to tell me what activities you do as a family. What works for you? Is it something you would never have tried naturally?
I sit down with my phone and Google the forest area we plan to visit. There are some lovely photos of the area, but I am looking for a specific one. It doesn’t need to be pretty or taken in the perfect light for submission for an annual photo award, but it does need to show the venue and its distinct characteristics.
I find the perfect picture of the entrance, the lettering depicting the venue very clearly. The path proceeds ahead with trees on each side inviting the walker to go ahead. I save the image and then continue to search for a few more images. There are some wooden sculptures along the walk that the children can search for and sit on if desired. Saving the images to my phone, I feel planned and ready for our forest adventure.
Sequence of Events
“Rhys, shoes then car, forest and sculptures” I say, pointing to each picture in turn on my phone as I state its relevance. I use minimal words avoiding complex sentences with unnecessary descriptive language. Rhys looks at each of the images. He is comfortable with the shoes and car, he has seen those on many occasions, but the forest is new. He looks at the picture, its archway entrance surrounded by nature. I put his shoes on and then run through the pictures with him once again. We tick shoes off the sequence, as I say, “Shoes finished, next car”
Grabbing the backpack containing some snacks and spare clothes, I hold Rhys’ hand as my husband takes charge of the other two. “What sculptures are there? Will there be a fox?” shouts my eldest in excitement. “I want to see the fox too. I want to see it too!” shouts the little one as her father tries to close the door behind him.
“Come on then, let’s go see them”
I buckle Rhys into his seat as his siblings join him, pulling out my phone once again, I show him the picture of the destination, ensuring he is clear about what order of activities are going to happen. As we pull off and drive away from our house, I turn to my husband, “I forgot to grab that bottle of water!” “We will be ok.” he responds, because turning back to the house is not what we have communicated. It will confuse Rhys, because in his head we have car then forest – home does not feature in the sequence. So we drive forward, agreeing to steal some of the kids squash if we become too parched.
It is not far to drive, a key consideration for our trip out. As we cruise down the country lanes, there is not a car in sight, until we round a corner and realise our timing is flawed. Cars are parked on the verges of the small country road, everyone having the same idea as ourselves.
“The carpark must be full” I comment, as my husband drives passed all the parked cars and pulls into the forest venue. Families with small children and their family dog are running up the lane excited for their day out. The parents walk casually chatting, having decided on a quick impromptu day in the dry weather, happy to have found a place for their car only a hundred meters away.
We drive up the little road to the carpark and let out a sigh of relief. A disabled spot sits vacant directly opposite the archway entrance of the picture I had placed in the sequence. Every other parking space is taken, with cars being creative by parking in extra spaces.
We pull into the disabled spot, and I climb out. Opening the back door, I once again show Rhys my phone. “Car finished, now forest” I say. The picture of the archway on my phone corresponding with the real life archway in front of me. “Forest” says Rhys acknowledging the day out.
Rhys climbs out the car, jumping in excitement. Our other two children join in excited to see the sculptures. I feel a knot deep in my stomach, the feeling I always get from the hope that a plan will execute successfully. Today it looks like it has.
As I stand holding Rhys’ hand, the archway entrance in front of me, my husband fiddles in the car. He places the blue disabled badge on the windscreen, dipicting our time of arrival, alongside a photo of our son.
I look at the families walking up the path from their cars which have been parked all the way down the lane. They look at me, with my physically able son and family. The normal springs of excitement and smiles on their faces. A lady tuts loud enough for me to hear, followed by a man behind her saying (in an audible tone), “Where’s their disability?”
The disability is invisible. We look like we don’t need to park in the disabled zone. Everything has gone perfectly, Rhys is totally able of walking, we have over an hours walk ahead of us which he will manage with no issue!
So why do we take up a disabled spot?
Nature’s Medicine
The sequence of pictures I showed Rhys and communicated multiple times was key to our success. If we had parked a few hundred metres down the road, like other families, the visual representation of the forest entrance would not have been there. The pictures would not have corresponded to the reality presented. The day would have ended either in Rhys refusing to get out the car (we weren’t there in his opinion) or a meltdown due to the confusion.
I could have carried him to the entrance (kicking and screaming in meltdown) but even if I could show him a delayed visual of the entrance, the meltdown would be in full swing with nothing but the option of time to let it pass (it could be hours). He would then have been physically unable to walk, his brain shutting down mentally with his body dropping to the floor.
I have experienced this. I have lived through the importance of planning and sequence. I have seen the look on my other children’s faces, when their brother has been unable to cope, and I have had to watch their excitement fade as we get back in the car and go home. Leaving a good day out for a meltdown wait out.
So when you see a family, who looks just like yours pull into a disabled spot, don’t tut or comment or gossip about it. Look for the blue badge. If it is there, that family has been through assessment and awarded it for a reason. Think of how lucky you are to be able to just jump in your car and go on a day out. Think of how you can surprise your children with an unknown venue or just freely take life as it comes.
Hidden disabilities are disabilities too!
We can’t. But that is ok, because with the right systems and support in place we can be just like every other family. We just have a different way of doing it!
Head to my Facebook page to let me know your thoughts. What is your view on hidden disabilities and the use of disabled spots. How can we help share its importance?
Tomorrow when you drop your child off at school, dressed in their something spotty for BBC Children in Need, there may be a child in line, in their school uniform. Naturally we think about the parents. How they have forgotten or sadly, in some cases, just do not care.
I hold my hand up as being one of those parents. Hopefully not the one who doesn’t care, but the one who has forgotten. I will even give myself credit for getting my children suited and booted, to find out it is actually an inset day, and just a month ago I sent my daughter to nursery dressed head to toe in a Halloween outfit – one week early for the celebrations.
And the forgetfulness does not just stop with me…
Last week, my eldest said to his father, as they were leaving for school, “I haven’t had any breakfast!” to which my husband responded, “I haven’t forgotten, we are going to eat and walk!” then grabbed a hot cross bun and some crackers while trying to hide his feeling of embaressment.
I’ll be honest, I haven’t even made a dent in my confessions. From the quantity of emails with instructions of cub badge completion, to spelling tests and odd sock days, I frankly don’t know how we manage to pull it off. As parents we must be assumed to have nothing else to do but coordinate kids activities and school requirements.
I would like to personally thank Amazon Prime for its two hour delivery service, as it is a large contributer to our family sucessfully meeting the needs of school email criteria!
Also on top of all this, I have a job and a life too. Not that I am any more organised in those!
But the point is that sometimes it looks like I have messed up, but actually I have also done some things in a certain way on purpose. I sent my son to school in his uniform on dress down day. It was not because I had forgotten, I knew perfectly well it was happening, but I ignored it! Also I didn’t do it because I was lazy or didn’t care for my son’s needs. I actually did it because I was in tune with my son’s needs.
Rhys is autistic, which means many things, but fundamentally means he likes structure. We also have to communicate in different ways to the standard family down the road, because verbal language is difficult for him.
School uniform means school, so wearing his trousers and polo shirt means that he knows it is a school day and not a weekend. It triggers the mental note of what is going to happen that day. It avoids confusion, a meltdown and any anxiety that is introduced through even a small change (such as different clothes).
But here is the point.
Rhys doesn’t care being in school in his uniform, while his peers are all dressed differently. But I think one day he will care. Also children ask questions, so when he stood out in his uniform, I felt he stood out even more than usual. A situation I wanted to tackle and find a way around. Which I did, and have done so for the past year.
So to all those parents in the same situation, dreading tomorrow’s dress down for Children in Need, give this a try.
Tomorrow, I will dress Rhys in his dress down clothes – his new spotty t-shirt! Then I will put his school t-shirt over the top of his clothes – I have his brother in on the act, who will do the same. This forms a visual representation of the day for Rhys, that it is a school day, and the mental association of a school day routine.
After breakfast, as we get our coats on, I will take Rhys’ school t-shirt off (so will his brother) in a quick t-shirt / coat switch over technique, and we will then leave the house. The mornings activities and structure will follow in the normality of a school day.
Tricking the System!
This method has worked wonders for us, and the best part is that Rhys will be just like all the other children arriving at school, in his dress down!
Let me know if you try it tomorrow. Let me know if it works.
“Rhys, hand” I ask as we walk out the house, my hand held out for him to take hold of. He continues to walk forward ignoring my outstretched grasp. I grab the sleeve of his coat as he darts past me. His hands are hidden in the sleeves and I try to pull one out, but he resists and contracts his fingers into a fist.
Our routine is planned and executed in the same way each day. We leave on the hour giving ourselves sufficient time to walk around the corner and down the road to pick up my eldest from school. The two roads are busy with cars and buses on the school commute and I have held Rhys’ hand every day, on route, to ensure his safety.
“Rhys, hand” I request firmly but he will only let me cling to his coat sleeve, refusing the restriction. I pause and think for a minute.
I am one of those over cautious parents. As I look up and see a pair of four year olds running freely ahead of their parents, my stress levels starts to rise. I consider the risks on those kids, the sence of danger and the consequences that could result. Those parents aren’t worried. But their situation is different to mine. Those parents don’t have the sprinkle of autism involved like in our scenario.
But we do have some things.
Over the years we have worked on the word “Stop” which Rhys responds to. I have also worked on routine and we have walked this route to school tens of times. The same pavement trodden and the same noises, sounds and smells experienced. The scenario has been tried and tested and therefore there is an opportunity to push the boundaries and check our progress.
“Let’s go, Rhys” I say and start to walk forward. He walks next to me, but seeing his new sense of freedom he suddenly bolts forward and runs at full speed down the pavement. “Rhys, stop!” I shout. It takes a few seconds to process, but he stops and waits for me.
Running ahead !
We continue in the same vain all the way down the busy road. Rhys watches the massive bus wheels and runs ahead, but always stopping on my command. Not once do I hold his hand, and although I am on constant alert and a high sense of unease, he is following my command and walking independently.
We have moved from a situation of not being able to leave the house to a situation of walking unrestrained! That is massive for us! That makes us feel more part of this world that everyone else lives in! The world further away from the stresses we once experienced.
The feeling of walking casually on a school run while my son runs ahead is a place I never imagined. But here we are, totally rocking it.
If you are not there yet, don’t give up. Things take time. They take years. Just take one step at a time. And you will get there!
An Autism Blog creating awareness one story at a time
