Unfortunately it was one of those scenarios where he was in the wrong place at the wrong time. He didn’t do anything, except stand upright in his normal way and sparkle and shine his decorations. It was just bad luck that one second he was upright and the next he was face planting the carpet.
The Gruffalo was to blame. Eight repetitions of The Gruffalo to be exact! Probably seven times too many!
I know my error as soon as my words of “Last Go” and “All finished” had been ignored. The over stimulation of an electronic flashing screen had resulted in an immediate drop to the floor and a scream a deducible too high.
I clasped my hands over my ears in the same way my son does when it is too much to handle.
It was too much to handle!
I watched my son scream the words “Gruffalo, Gruffalo, Gruffalo” over and over again, knowing we had passed the line, and it was just a matter of waiting it out.
He started running back and forth towards an irrelevant destination. Frantic that the bright-image-presenting box was now a blank screen and his head remained full of want.
I sat there supporting his situation. Cuddles available for when he was ready to accept them, and friendly comforting words constantly coming from my mouth.
It happened so quickly.
I turned for a second and out of the corner of my eye I saw it evolve one frame at a time. The tree fell forward in slow motion, its tinsel in tact while the star and baubles clung on for dear life. Once it was over I looked to my son. Rhys stood with the evidence of two baubles in his hand. He had been caught in the act of destruction.
But a fallen tree does not bring back the Gruffalo, and in my head, I knew we just had to push past and let the meltdown subside. So I sat on the carpet repeating “Rhys, it is going to be ok” and offering cuddles, which just got constantly rejected.
It took an hour. But we both got through it. A lesson learnt. A new plan to be formulated going forward.
I made the wrong choice today. Day one of isolation was always going to be a steep learning curve, and trying to work full time, while occupying a six year old was always going to have its compromises. However six hours straight of the Gruffalo is not the solution.
I know that now.
Only nine days to go.
At least this time (unlike March) I have an end date in mind.
Suggestions and options for telly-free entertainment gladly accepted.
We stand in a large room, the Christmas tunes are ringing out of a speaker in the corner. Rhys was happy to enter the building, and seems calm, but still clutches his ears with his hands, slightly anxious.
Santa visits are never on the agenda for our little boy. The lights and loud jingles, followed by a stranger in a bright suit, are not a recipe of joy for my little boy – a perfect sensory overload disaster! Previous attempts have seen complete abandonment, with tears and screaming due to it all being too much. Other children waiting excitedly in line, while I hold back the tears and dodge kicks and slaps from my son who is terrified of the complexity of the experience. An experience that every other child looks forward to, is something we have left off the past Christmas to-do lists.
But for some reason, here we are. Waiting our turn to see the big fat man. We are giving it another go.
If Rhys doesn’t want to, that is ok. We have learnt over the years to try new things and have realistic expectations of them not coming to fruition.
“Come on through, please” says the kind blonde haired lady, and I follow my husband as I hold Rhys’ hand.
The room is quiet and calm, with lights flickering in the corners. A massive fireplace is in the centre of the wall and the jolly, cookie loving chap is waiting for us in his chair.
“Ho, ho, ho. Hello Rhys” he says, as we notice some chairs placed socially distanced, two meters away from Santa.
As two of my children take their seats, smiling at the guy who is going to make all their dreams come true, my little Rhys shuttle runs back and forward across the room.
“Hello, Rhys” says Santa, from his seat by the fire. Rhys stops and looks up through the bushy man’s beard. “Head, shoulders, knees and toes” he shouts, immediately commencing with the song by touching his head with his two hands.
Santa stands up, and Rhys grabs both his hands, lifting them upwards towards Santa’s head, prompting him to join in with the song. The sight is comical, Santa singing and copying the actions of my son, a sight so special to a family who does not do Santa. As the song comes to an end, Rhys then starts to spring around the little room, jumping forward with both feet in a sort of bunny hop.
“Ho ho, I can jump too!” says Santa, and as I stand on the side, I watch a full grown man with his belly full of jelly, mimic my little boy. My other two children join in, and it doesn’t take long before all six of us are bouncing around the room in a scenario no one has ever seen presented on any Christmas card!
Today demonstrated to me that it is people who make the difference. Rhys didn’t need Santa or fancy lights or presents. He just wanted someone to join him in his jumping and songs.
And today that person was Santa 🎅
Thank you to Caerphilly Miners Centre for the Community for hosting the big jolly chap. You have not only made one little boy’s Christmas, but you have made a mum’s Christmas magical too. Because there are no words to describe seeing my son interact with Santa in his very own way, but even better to have Santa so naturally interact back.
🎅🎅🎅🎅🎅🎅🎅🎅🎅🎅🎅
…and Santa, there will be a beer and mince pie waiting for you in a couple of weeks time.
Twelve little picture cards are placed sequentially down the wall. Each one in the green coloured section showing that they are still to happen.
I remember the process we went through to get to the full list of the day’s events. Initially I had placed them all on the wall and somehow expected Rhys to acknowledge the process – I was obviously delusional, or maybe just had a lot still to learn!
Three years ago we had mastered the first-then strategy. The use of two pictures to move Rhys between activities, communicating a clear sequence and managing the transition. Pictures became the basis of everything. I used them to communicate with him, reducing anxiety and avoiding meltdowns.
I would place little pictures onto a green card showing where we were going and what would happen next. Crouching down to Rhys’ eye level in carparks, shopping centres and play areas with my sequence of pictures got a number of stares from the passers by, but I didn’t see the on looking eyes, I saw my son and the need to do everything to communicate with him and avoid a meltdown due to confusion and frustration.
The miniature schedule worked extremely well, and I continued to use it in a portable fashion.
After a few months, I changed to a red and green card adding a few extra activities to the sequence. Hand-over-hand I helped Rhys move each activity card from the green section to the red section to signify its completion.
It didn’t take long for Rhys to master this second step.
Once comfortable, I implemented the final stage. I took the schedule card we had been using for a number of weeks and stuck it to the hallway wall. The perfect central location to communicate our plan. As the activities were completed, I would take Rhys to the wall for him to move the card to the red section.
He soon knew where to see his plan. Now consisting of over twelve activities per day.
As I finished making the dinner this evening, I spotted a mop of blonde hair walk up to the communication wall. The little hand reached for the dinner card and moved it across to the red, “All finished” he said. But he wasn’t finished, he kept going. Bath, pyjamas, brush teeth were moved across too, and then the hand tapped the last card, “Bedtime!” it said, and two little legs walked down the hallway and up the stairs.
Schedules can help communicate the events of the day, but they can do so much more, like communicating when your little one is done.
👕🍳🚗🛁🛏
Click here to get a step by step guide to schedules.
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.
An Autism Blog creating awareness one story at a time
