Umizumi is playing on the telly, with Bot displaying the task on his belly while Geo and Milli threw around some shapes and patterns to solve the problem at hand. I leave Rhys and his sister to the entertainment, their big eyes pulling in the light from the digital display.
As I get on with my house chores, I pause and listen. That tranquil sound we hardly ever hear, but is the top of the Christmas list, emanates through the house – the sound of silence! I continue to tidy the kitchen, but that feeling of concern, over too much silence, suddenly engulfs me. I put down the dishcloth and go back into the lounge to check on the situation.
As I walk into the room, Rhys is not in my line of sight, but turning around towards my daughter, I see her sitting still on the couch. She looks up to me “I’m stuck Mummy” she says, and I smile at the scene in front of me.
Rhys, too exhausted to continue, has passed out, across his sister’s lap. A comfortable spot in his opinion, but a slight bit of inconvenience for his newly found mattress! “Dont worry Jessie” I say, and lift Rhys from her lap. “I was looking after him” she says, her big brown eyes looking up at her brother now passed out over my shoulder. “He wanted to sleep on me”
With her pure little heart watching out for her brother, she curls her legs back up under her body and turns back to her tv show, content that her duty is done.
We have to all look out for each other even if it is just giving your lap up for a sleepy head! Engagement and bonding comes in many different ways and sizes.
The chair is hard and uncomfortable, as I shift back and forward, crossing and uncrossing my legs in nervousness. There is a sickness in my stomach as I sit and listen to the comments being spoken to me from the other side of the table.
“A quiet environment will suit him better”
“He is not at the level expected for his age”
“We are not going to be able to meet his needs going into the future”
“We are not equipped to meet his requirements”
I sit silent, letting each word hit me, like small pellets being thrown at me, striking one by one. I don’t respond.
Every day that we had collected my son from school I had been met with positivity, and updates on how well he was settling in. His home book had details of tasks he has completed alongside paintings he had constructed. He had settled in.
I sat in shock at being thrown a curve ball, a switch from daily positive updates to an annual review where every update defined my son as not meeting the grade and in a school that could not accommodate him. There is nothing more hurtful than getting told that your child doesn’t belong and every comment cementing the fact that he is different.
An assessment had been done and the results were pushed across the table to us. I read the scale which defined the developmental age range, and then looked at the assessment for my son. It was separated into categories of social interaction, literacy, physical development, and mathematics. Every category placed him below his peers, which was not a surprise, but what struck me was that he had been assigned a developmental age of a year to eighteen months in many of the categories. Rhys was four years old.
The school couldn’t meet his needs!
I disagreed with the method of assessment, I believed that giving a minimal score for literacy, because he couldn’t read aloud was unacceptable, and that marking him down physically because he couldn’t jump when requested verbally, disadvantaged him due to the inability of him to understand perceptive language.
But I still sat silent.
I sat silent because I was using every ounce of strength to hold back the tears. I was not prepared for the bombshell they had just delivered with no positive comments of how amazing my son was and the progress he had made over the year. I had no response prepared, because I had been hit with something unexpected.
We left that day, and I cried. I ran through so many things in my head of what I should have said, about what I should have asked. But in the shock, I had just sat there and let the words hit me like rocks. The school was not right for my son, they couldn’t accommodate him, we should look at a different setting!
But although at the time I had started to construct a delayed list of words and comments I wanted to return, I am grateful for what they did. They forced us to make a decision that has changed the path for my son. His autism makes him different, it means things are approached differently, and they were right, that school was not the right fit.
We visited many schools and gathered feedback from different parents on their decisions and experience. I seeked professional guidance but received no help, just the response, “You know your son best” – but I didn’t! I knew nothing about what my son needed. I had no experience in the school system or the world of autism. It was a world I had experienced for less than a year. The truth, I believe, was that if the professionals did provide guidance a large percentage of children would be referred for specialist care, but the system just cannot accommodate it.
Within six months of that school meeting, Rhys moved to a new school. I fought every barrier and even found direct contacts within the education system to ensure he got the support he needed. Rhys joined a special needs base at the beginning of his second school year. They specialised in autism, with the additional advantage of still being within a mainstream school. He would have the professionals on site, moving at his pace and teaching him with methods suited to his development.
It was an emotional time where our expectations and future vision had been shattered. The pain of rejection towards your child is heart breaking and knocks you backwards, it hits a spot you don’t even knew exists. At the time I couldn’t make a decision with my heart, so did it with my head, detailing the factual reasons why a school move was the right thing to do.
Rhys changed schools eighteen months ago.
Last night my phone rang. Rhys’ teacher spoke on the other end of the line, she spoke positively about every aspect of Rhys and his development at school. His excitement when he arrives and all the end of year activities which are being planned. But the unexpected update was around his engagement. She spoke about how he interacts with the other children and the friendships he has formed. Coming from a school where he sat on the side-lines, trailing behind the level of his peers, and unintegrated in the classroom, to be told your child, with social challenges, has friends, is something I have no words to describe. He is part of a group, he is part of the class, he even has a best friend.
The right decision
The decision I made with my head over eighteen months ago was the right one, and I am grateful for that annual review that left me in tears. They did the right thing, because moving Rhys was the right thing to do for him, even if I found it difficult to accept at the time. And if it had not been the right decision, it was something we could have looked at again and changed.
Because a decision is for that moment with the information you have at that time. If over time those details change, you can always reassess and take a different path. But you will not know unless you take that leap and try.
Head to my Facebook page and share your thoughts. What education solution has met your child’s needs? What was your experience? Are you struggling to make a decision?
“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?
An Autism Blog creating awareness one story at a time
