All posts by AMe

school

I felt abandoned, no one would tell me the right school for my autistic child?

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I remember sitting around a table, a range of individuals at each space holding different professions and reasons for being there. The school headmistress, the deputy head, the speech and language therapist, my son’s class teacher, his 1-2-1 and then me and my husband, his parents, all waiting to discuss my son.

We were in a school meeting about my son, waiting to discuss his development and his future targets.

Rhys was in a mainstream school, with full support via an amazing teaching assistant who helped him move forward in engagement, and speech. The arrangement was meeting my needs, and my expectations for my son of attending the school across the road, and progressing through with the additional support he needed for his education.

Everyday when I picked him up he would come out to me, his home book in his bag detailing his achievements for the day. The statements in the book were all I had to go by, my son couldn’t talk or answer the standard question of, “How was your day?” I knew nothing of his activities except for the few sentences in black and white, and a brief conversation at the school entrance.

And now I sat in a meeting. A formal arrangement to talk about my little boy. My little boy who had only just turned four, a few months earlier.

And then the words came.

“We don’t think this is the right place for Rhys”

It hit us hard. It was like someone had taken all our plans and expectations for my son, and within the few seconds in which those words being delivered, they had smashed our view of his future into a thousand pieces, leaving us with nothing.

As the words were said, I had no response. I couldn’t talk. Others may have immediately retaliated, argued “What do you mean, what are you talking about?” or asked questions of what the right setting was.

But I just sat there trying to process the words. Like a machine in slow motion, dissecting each word and working out what it meant through a state of shock.

As the rest of the meeting progressed, I sat numb. All the words which were said just brushed over me, not absorbing into my mind. I had no response to the statements, because I felt empty, like everything I had every planned, and decided and envisioned, had been wiped out in one single swipe!

It was like taking the bullet which had been fired, and not reacting, just feeling the burn.

I walked out of that meeting in a haze, as if I wasn’t present in the situation, because I had nothing to grasp hold of, I was left to rebuild something from nothing.

Time to Find Answers

After I had cried for hours, I phoned the autism outreach programme who were responsible for my son’s support, and asked them the question I had managed to form in my mind, “What school is right for my son?”

If his current school was not the right setting, I wanted to know what the right setting was, and that was a question I had for the professionals, the ones who knew about Autism and the methods to bring the best out in my child. These people had been supporting my son and had constructed reports, assessments on him and even knew him as a person, having worked with him directly.

As I stood with the phone to my ear, I heard the words which did not answer my question, just a political sidetrack of the guidance I needed, “You know your child best, and the education he needs” came the response.

If I had thought my plans had been shattered before, those words just fired a second bullet. I had asked the professionals for help, but just had the challenge passed back to me. Passed back to a person, who had only really started to understand what autism was, less than twelve months ago. And now I was expected to know the answer to a question on his education, a decision that fundamentally was key to his future!

The truth was not only that I had no knowledge or idea of what education was right for my son, but more importantly, I didn’t know my son, and I didn’t know how to address his challenges or difficulties.

People spent years studying psychology, speech therapy, occupational therapy and researching the best methods of engaging and teaching those with autism. But no one would tell me the best for my child, or what would be best for him?

I accepted that the decision would always be on our shoulders, but a decision can not be made without information, and that information was not forth coming.

So I researched

So I researched, and we visited different schools and settings. We gathered all the information we could find.

But I still struggled to make a decision.

It takes a long time to change expectations, they do not change over night. So I did the only thing I could. I made a decision on the facts, taking all the emotion out of it. Because there was a lot of emotion, a lot of disappointment and feeling of failure.

We decided on moving our boy. After finding a different mainstream school which had a base unit specific for autistic children, we felt it gave the best of both worlds.

I then had to Fight

But unlike the normal process of moving schools I then found out I had to fight. We had been told his current setting was not suitable, we had found an alternative, and then we had to fight for it.

The process firstly involved a request into the local education authority for a school move, with explanations of why, and all the supporting evidence.

The case then went to panel.

It went to a group of people who would sit around a table, and view the facts. The black and white words which described our case, without any attendance by ourselves or my son to discuss the need.

But that was not the end.

Once approved at the first panel, it went to a second panel for assessment. All while weeks passed with no communication on the process or what education my son would be provided. After a second panel approval, then I had to have my fingers crossed that there was even space in the school. But thank goodness there was.

We were lucky. Many families are not.

Rhys started at his new school in the September, a whole eight months after the process began. I was still getting to grips with the change, and I still didn’t know if we had made the right decision.

But it had been made.

As the weeks passed and normality of the new school run settled into becoming the norm, I started to see changes in my son. I started to see his happiness and excitement at running off to school, and the independence and being part of a group that the new school provided.

The decision I had made with my head, soon settled as the right decision within my heart.

But this was not the end.

Unlike all the other families who only worry about getting a place in school for their child in reception and then again in high school, we go through the process every year. Annually we sit down with the school, and assess my son’s progress and educational needs. We sit in a formal meeting and a decision is made if he is still in the right setting.

At any point we may be reassessing again. We may be looking to move him. The fight for education, the fight for a vital need that should not be a fight!

Education is a right, something that everyone else takes for granted is made difficult for our children.

Why does my son have to changes his world to adapt to a system that is flawed? Why can’t the system change to accommodate? Why can’t the system be inclusive, and adoptive of all abilities?

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Throw Back

We will wait for the light, but until then, I will sit in the dark with you!

The house stank of bleach. A two hour marathon of scrubbing and cleaning. No clutter remained, each piece of rubbish discarded, with papers filed and books returned to their shelves.

But it still wasn’t right.

It was like one of those makeover shows. Looking around my house I could still only see the before shot, the one through the grey filter, no sparkles or brightness surrounded me. I felt defeated, the need to find some control in my life when everything was falling apart, but my world still looked physically dull and uninviting.

A cry came from the other room and with a deep breath, I pushed my feelings down into my stomach, I wiped the tears from my face, smiled a fake smile and walked through to my three year old son who had awoken from a nap on the couch. His cry was the only sound he could make, the only method of asking for attention. There were no words or babbles, unlike my friends children of the same age.

He was non-verbal with a diagnosis of Autism Spectrum Disorder. A diagnosis we had received a few months earlier.

But it was not the diagnosis that had changed my current mental state, it was the lead up to it. It was the constant changes in our lives. The change from the lives we thought we would have, to a life that was spiralling out of control. A new path that we didn’t have the map to. A new set of rules we didn’t know how to follow.

Every day I woke with a fresh positive perspective, with a view that each new day would be better, but it never materialised. Each day grew darker, with feelings and emotions bottled up. The need to not lose strengh or show weakness in a world of comparison at the school gates.

I felt so alone.

No one understood.

My friends led different lives, where their biggest worries were of lost jumpers and water bottles, or what day was PE. Had their child got the right pencil case or whose playdate was next?

My worries were greater. The same things which were routine to everyone else were impossible to me.

I worried about how to leave the house without my son having a meltdown. I worried about whether he would ever speak, whether he would ever understand me, whether he would be able to live an independent life.

I couldnt walk into a shop, an activity centre or a church hall, because they were unfamiliar to my son. I couldn’t bend down to his level and explain, or talk him through it – words were meaningless. They were useless to a boy who didn’t know their meaning. We were foreigners from different worlds.

So as I sat next to him, I cried. The feelings I pushed down had run out of space to hide. My body ached with pain from the overload of emotion, where my world was an entrapment that closed in on me.

The cries of excited children ran past my window, calling after their friends, and it made me feel worse. My son silent next to me, oblivious to what I was feeling.

I felt like I had fallen from a place of control and shattered into a million pieces. But somehow I had held it all together whenever in public. No one who understood, and I had not allowed them in to understand.

As I cried alone in my front room, the front door opened. My husband stood in the doorway and without words approached me and took me in his arms. He didn’t tell me it would be alright. He didn’t tell me we would get through it. All those words had been said before and were being said without even saying them.

But he said he was there with me. We were in it together, and he would sit in the dark with me. And we would make it.

And we have.

We have come out that grey. The world took a while to get its glimmer back. It took time for us to work out that path and find the way.

Parenting the special needs way is hard. I know that because I do it, and will continue to do it.

It starts out dark, but it does get brighter, and as longs as you are willing to invite others in, they will sit in the dark with you.

You don’t need to sit in that dark alone.
There are many of us here to do that with you.

⚫⚫⚫⚫⚫⚫⚫⚫

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Throw Back

Milestones Worth Celebrating!

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I remember standing in a gymnastic hall. All the equipment surrounded me, the parallel bars, beam, trampolines and other strange equipment that I don’t know the name of.

Others were energetically lunging themselves into the foam pit, or doing fancy somersaults on the trampoline.

Kids ran around us joining in with the toddlers open floor session. Some joined in with the songs and their corresponding actions that were being enacted on the open floor. Others were energetically lunging themselves into the foam pit, or doing fancy somersaults on the trampoline.

As parents followed their children around the different pieces of apparatus, I could overhear a parent next to me. Her little girl was about two, and carefully tackling the well thought out obstacle course that had been setup by one of the instructors. Her mother held her hand as she walked over the soft mat up to the low ground-level beam. “Come on darling” she said “you can do it”.

The little girl was nervous but reluctantly put her first foot forward, the only stability she had was from her arms which she spanned out on either side of herself to distribute her weight. As she took each step, she came closer and closer to the other end of the beam. Her mother slowly walked next to her, judging if she was going to make it, ready to grab her hand if the wobble became a potential slip or fall.

The mother watched her daughter’s every step, but she only watched with one eye, because her other eye was on the rest of the room. She checked to see if anyone else was witnessing this achievement in the making. Her daughter was in her element, she was reaching a milestone worthy of an applause.

As the little girl took her last step and accomplished the great feat, her mother lifted her in the air, and slightly louder than required said “Well done, you are amazing” then swung her around and looked for the next opportunity for success.

I turned away from this celebratory event and stared down at Rhys. He sat on the floor oblivious to all the people, children and noise around him. I followed his line of slight across the wide open space and up the wall about ten meters away from him. Half way up was a white clock, the numbers one to twelve around the edge.

Out of all the activities, entertainment, and gymnastic equipment, he had chosen the item that had the least relevance to the situation, but an item that meant more to him than any of the things that surrounded him.

I had no hope of getting Rhys to walk a beam like that little girl. I had no ability to even get him to engage with the room. The clock on the wall was his only interest, not the ability to display his achievements of somersaults or dismounts off a low beam.

Since this situation about five years ago, I have overheard many milestones being celebrated by parents. They are being celebrated in parks, play centres and all across social media. A video of a child’s first words, or a little boy initiating a pee all by himself behind a tree because he knew he needed to go!

Rhys is accomplishing so many things, but often I feel that I don’t have enough words to describe the mountain we have climbed to achieve them. It is so hard to explain the feeling when Rhys runs down an unknown path for the first time, or he says “drawing”, taking a pen in his hand with no reluctance, or he understands a simple command like “pass me that book!”

… to others it just doesn’t seem to be as bigger deal to them as it is to you.

It is a feeling of wanting to shout it from the roof tops. It is not like the mother in gymnastics who secretly invites you to share in the accomplishment. In contrast, you want to fly a banner through the sky and publish it in a newspaper. But to others it just doesn’t seem to be as bigger deal to them as it is to you. Their children did all these things as part of their ongoing development. They are not milestones they recorded or celebrated. They just happened!

But that doesn’t matter because they are not their child’s achievements. They are Rhys’ achievements. They are the result of hard work, and I have realised that I don’t need the acceptance from others to confirm that they are worthy of a bottle of champagne, because I know what we have gone through to achieve them. He may have taken a bit longer or a lot longer to get there. But it is not a race, we all do it in our own time.

There is no need to look to others for acceptance that something is worthy of celebrating. We all know that feeling inside when something remarkable happens, and when I look at Rhys, I know deep down he is celebrating with me too.

🕝🕑🕧🕣🕞🕜🕟🕢🕥🕙🕦🕚🕠

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Autism Life

The Life of a Special Needs Parent

Special needs parents lead different lives.

We spend a life of searching. Sifting through websites, articles, picking up rogue posts off social media, or a snippet of information from a conversation. Information which will change things for our children going forward.

In the begining we quickly realised that there was no special parenting guide or resource base where everything was waiting for us. You had to find it, and they hide it so well, scattering it in a multitude of places!

We lead a life of fighting

We lead a life of fighting. Fighting the authorities for the best support and education for our children, and then fighting to keep that support. We fight for a referral, and then have to wait months, sometimes years to get the services we deserve, to only get pushed aside with a written report ready to file away with the others.

Our children are discharged from speech and language specialists when they are still unable to communicate or speak a single word, leading to new fight to keep what you were promised.

The documentation is endless. Multiple write-ups of our child’s development, always in a negative tone, visually showing in black and white, all the things our children cannot do, rather than the difficulties that have overcome or the amazing barriers they have smashed down.

We hold legal documents which define the education to be delivered to our children, and then fight the schools to deliver it. Education that is published as free for all, but really it is just for those where it is easy to cater for.

We lead lives of staring and comments. A life where we stand out because our children are louder than others, or attract attention to themselves by shuttle runs up and down supermarket isles or getting super excited at a moving piece of equipment, their hands flapping in a overload of euphoria.

We communicate differently, in ways we have had to research, try, fail and then finally succeed with. Stooping down to our child’s level and holding up pictures or round coloured traffic light cards, to help them understand what is next or about to end.

Stares come from those parents who can just shout for their kids to follow, confused at why we don’t just tell our children through voice commands about what to do. They hold their heads up high thinking they are better parents that us – but we know different, we know how far we have come.

We have to contend with angry parents whose children have been pushed, hit or kicked by our child. We try to articulate that the reason wasn’t out of violence, but rather a form of non-verbal communication, or frustration or sensory overload. We continuously voice our apologies for something out of our control. But those parents don’t listen, they just want justice for their hard, a hard that is so much different to ours. So we start to avoid those places, we steer clear of those people.

We know all about sensory overload, an area which meant nothing to us before. We learn how to help our children manage it, how to notice the signs and places to avoid. It becomes a central reason for the way our children act and how we coordinate everything we do.

Our children can’t go to all the places.

Because our children can’t go to all the places. Some places are too over-whelming. It could be a birthday party, or a catch-up at a play centre, or an unknown location you don’t have a picture for. We decline these places because we know the potential outcome. We know it may not be pretty.

We are however parents who make our own rulebooks. We create new goals for our children, milestones you will never find in professional checklists or folders. We punch the air in jubilation when our children manage to zip up their coats after years of hard work, through the use of strategies and techniques we have mastered along the way.

We high five our partners, keeping our celebrations within our tribe.

We high five our partners when we watch as our child follows a verbal instruction, because we have had years of them not understanding, just sitting blank faced at our request.

We keep our celebrations with our tribe, the parents who know the same struggles. Because there are no words to explain the feeling when your child finally says their first word, years after the rule book said they should. Other parents are past that stage, that phase was years ago, when their children were also celebrating their first step or ball throw. They have moved onto newer and bigger things.

We feel the loneliness, the separation from other families. We talk about our hard to those who understand, because only by living through it, do you know how hard it actually is.

But our children are still here. They may not be meeting the expectations of society, but they are exceeding all of ours!

Special needs parents are taking each day at a time. They are fighting for their kids. They are advocating for their children’s conditions and pushing for inclusion in a world which cuts them off.

And while we do that our children will continue to grow and develop in their own way…

Because..

…the world doesn’t define what our children are to become, our children define the world they want it to be.

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Guest Post

I Sobbed For So Many Reasons…

Guest Post by Sarah Halliday

“Hi Mummy”

“Hi Mummy” he said, looking straight at me, as he walked through the bathroom door to find me in the bath.

I stared back at my 6 year old minimally verbal son, mouth wide open, in utter disbelief.

And then I sobbed……

I sobbed because…well…let’s face it, it’s been a pretty difficult year.

I sobbed because it was the first time my son had said this to me.

I sobbed because of the years of therapy we had gone through to get to this point. The amount of hours spent holding out bubbles and waiting for the ready, steady….. GO!

I sobbed because for other families this is an everyday occurrence, but for us it is so rare.

I sobbed because of the countless courses and workshops and appointments I had attended on how to engage and play with my child in an attempt to initiate speech and encourage engagement.

I sobbed due to the many stories I had heard, and clung to, about when other children had started talking when they were 5/6/7 and at each birthday we were still waiting.

I sobbed because sometimes it’s all too overwhelming. The forms, the meetings, the new therapies, the sleepless nights, the forms……

I sobbed because I’m so tired.

I sobbed because sometimes it feels like there’s a glass wall between us, separating us from my world to yours, and some days I just want to smash it down into a million little pieces.

I sobbed because I saw a glimpse into our potential future, where we could talk and engage with each other.

I sobbed because…..it was such a happy moment for me…. full of hope and promise for our future together.

About the Author: Sarah is a mother to a very happy, lively 6 year old boy. Charlie was diagnosed with autism when he was 3 years old and they are still learning everyday. He now has a little sister who absolutely adores her older brother….he’s not so sure … 🙂

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