What Being Discharged From Services Feels Like For A Special Needs Parent


I’m standing at a cliff edge crying out for help for my child. My voice echoes back to me in the chill and darkness of the valley ahead. I feel alone, cold, worried. Has anyone been here before? Can anyone help?


A tap on my shoulder from a speech therapist. A slither of hope in an otherwise wilderness. ‘Tell me about your child.’ So I do; readily, enthusiastically, because, after all, it’s my specialist subject. She huma and haws. Will she leave me back at that cliff edge again or bring me into safety. She offered me little really: Some visuals posted out to me to help me with my non verbal child. No working with the child. No courses available at present.


Discharged.


Like a knife wound to an already injured animal. Powerless to fight, alone, frightened. The word echoes on in the valley. Left alone again.


A pull on my clothing. Dare I turn around? Is it possible someone else may be there? Could this be the help I need so urgently, so desperately for my child? ‘Tell me about your child’. With tears running down my face, my heart beating fast, the fear evident with every word I utter: The paediatrician listens, refers on, moves on, one retires and we never see her again. It’s a fight for another appointment. Months past, years past until I realise what had happened:


Discharged.


Like they are washing their hands of my child. Nothing more they can do apparently. Hope disappeared. Back at the cliff point once again.


A whisper of my name. Hospital clinics this time: Neurology, medical paediatricians, ENT, eye clinics…in the end we’re just a number. In, out, maybe back again another time, maybe not. They might do further tests or they may send us to ‘no-man’s land’ also known in medical terms as ‘watch and wait.’ It’s another name for ‘do nothing and hope for the best.’ Some doctors we see more than once but not many. So much repeating our story, so many different faces. One day they all seem to come to an end and you age out, or they realise they have seen you too often, they start to recognise your face so it’s that time:


Discharged.


Like taking the trash out for the binmen because you have no more use for it. Like taking your old clothes to charity hoping someone else will one day see them and think they are of value. Either way you are no longer wanted. Off you go, but don’t hurry back.


Back at the cliff edge calling out for help again. Your own voice echoes back like it’s haunting you. Your child has aged, you are still pushing them in a wheelchair, progress was slow, your disabled child morphed slowly through the system to a disabled adult. Every time you passed go you collected another diagnosis.


Did anyone really help? Oh people referred on, people send out forms and ticked boxes but it never took long to be alone again. Services started, services ended. Funding run out, appointment drew further apart or never came at all and some professionals vanished like magic.


Reasons given range from lack of progress, no longer meeting criteria, too complex, not best use of time, or simply lack of resources. Rarely is it actually due to no loner needing the service.


Discharged.


Like a slap on the face, a stab to the heart, a sinking alone feeling that your child really doesn’t matter.


I stand at the cliff edge crying out for help for my child. My voice echoes back to me in the stillness and darkness. Oh there once were a few tugs, a few dull whispers, a few taps on my shoulders…but they are all long gone now.


I scream out: ‘Where is everyone? Please help me! Why did we get discharged?’


The echo comes back to me in the valley..’discharged


So we go it alone. Again.

Having A Child Who Is Forever Vulnerable

Vulnerable: to be weak, without protection, easily hurt physically or emotionally, easily influenced, prone to attack, naive, easily taken advantage of.

 

I used to think of vulnerable in terms of a small child unable to defend themselves, an elderly person living alone unable to fight off an intruder or a homeless young person who could easily be taken advantage of by others.

That was until I had a disabled child of my own.

My son was born vulnerable. Smaller than average due to being a twin, a little premature and struggling to regulate his own temperature.

He remained vulnerable as a toddler still crawling when all the other children were walking and in danger of being tripped over or having his hands trampled on.

He started nursery vulnerable, relying at three to be carried still, needing adults to guide him, feed him, change him and dress him.

He started school still vulnerable unable to speak, not understanding the world yet and still needing adults to do everything for him.

This year he finishes primary school and he’s STILL vulnerable. Still non verbal, now with significant learning disabilities, diagnosed autistic, complex medical needs, visually impaired, epileptic and still requiring adults to dress him, brush his hair, wash him and see to his bodily needs among many other things.

We can all have periods in our lives when we are vulnerable, perhaps driving in an unfamiliar town, starting a new job, living alone, walking in the dark or feeling unwell. Having periods of vulnerability keeps us humble and human but it’s uncomfortable, frightening and damaging to our self esteem. Most people go out of their way to avoid being vulnerable because the feeling of helplessness is disempowering.

Now imagine how it feels to have a child who will be forever vulnerable.

He will forever be prone to danger.

Forever be weak.

Forever without protection.

Forever easily hurt physically and emotionally.

Forever easily influenced.

Forever prone to attack.

Forever naive.

Forever easily taken advantage of.

That’s terrifying.

When people see special needs parents like myself and say things like ‘she’s very over protective’ or ‘still holding his hand at 11? I’d never do that!’ or ‘you need to give him more independence’ I wonder if they understand vulnerability? Can they see the fear in my eyes, hear the fast beating of my heart and notice the never ending worries swirling around in my head?

I can’t take my eye off the ball.

I can’t stop being concerned.

I can’t ‘back off’

I can’t die.

My child can’t go out to play, be alone, be sent to the shops for me, go out on a bike, see his friends (he hasn’t got any anyway), or even walk to school. He requires adult supervision all the time and always will.

He can’t speak, he can’t read, he can’t write, he can’t ask for help and he can’t get himself food. He’ll never live independently or work or marry because he will be forever vulnerable.

He was born vulnerable, he has grown up vulnerable and he will die vulnerable. My job as his parent is to protect, advocate, nurture, guide, teach and put in place everything needed to ensure he remains safe throughout his life.

The world is a scary place when you are alone, in the dark, unwell, somewhere new and always reliant on others for everything. Now imagine you had a child who was forever like that.

That’s what it’s like having a child who is forever vulnerable.

Living in Fear as a Special Needs Parent

The following piece has been submitted anonymously for obvious reasons. No parent should have to live like this but sadly this is the reality for so many parents of children in the U.K. with additional support needs. It is vital stories like this are heard.

Why I live in fear.

Fear is the emotion I identify with the most. Some days it is all I feel.

I have two boys, let’s call them Harry and James. They both have additional needs. Harry is autistic and is not in school, he has been excluded several times and now refuses to go. James is undiagnosed but probably also autistic, he goes to school but has severe anxiety and is very unhappy there. 

Harry has an EHCP, but it is totally inadequate. To get it changed I have to take the local authority to court.

I am afraid we won’t win, and that the fight to get the right help will be too much for me.

Meanwhile he is not in school (because his needs have not been met for so long) and his absences are being marked down as unauthorised.

I am afraid that I will be prosecuted.

I have asked for help from every conceivable agency. We have been turned down for a social care assessment because Harry is not ‘disabled’ enough.

I am afraid that we will be left until we reach crisis point and then suddenly we’ll end up under Child Protection, despite the fact we’re allegedly coping well enough right now.

Sometimes I’m afraid of Harry, because his behaviour can be very violent and challenging.

I do everything I can at home, but I cannot control the school situation which is causing so much anxiety and driving his behaviour. I am too afraid to tell anyone how bad it is, because I’m scared he’ll be taken away.

I am afraid of the effect this is having on James. My happy little boy has become serious and quiet and cries often.

I live on my own with my children and, because Harry is not in school, I am with one or both of them 24 hours a day without respite. Their needs are very different and there is only one of me. I can only ever meet the needs of one of them at the expense of the other.

I am afraid they are being robbed of the happy childhood they deserve. 

I am afraid Harry will end up in the criminal justice system.

He is vulnerable to influence and bullying.

I am afraid that people will not be able to look past his extensive vocabulary and see his problems with social interaction and receptive language and jump to all the wrong conclusions. 

I am afraid that my children will not have the happy future that they deserve, because rather than access to early intervention services we will be pushed beyond breaking point and irreversible damage will be done.

I am afraid that people won’t see my children for who they really are: Sweet, loving and kind little boys that still call me mummy and enjoy watching Paw Patrol, despite their age.

I am afraid for my future.

I gave up a well paid job to be a carer. I have no pension, I don’t own my own home and I have no savings. At least one of my children will probably still be living with me well past the age you would normally expect. 

I am afraid of growing old alone, as the opportunity to meet someone feels like an impossibility right now, and it feels like I have been alone forever.

I am afraid what will happen to my boys if something happens to me, because no one could love or protect them, and no one understands the nuances of their behaviours and care needs, like I do. They would be so frightened, alone and confused if I wasn’t here anymore. 

Some days all I feel is fear. 

Why I no longer grieve for my autistic son

Four and a half years ago I wrote a blog titled ‘grieving for a child I haven’t lost’. It has been read over 100 thousand times since I wrote it and appeared in a number of books and on some popular websites. It’s been one of the most commented pieces I have written and evoked very strong feelings from people, both good and bad.

Time has passed and feelings change. Some advised me to delete that blog. But why would I be ashamed of how I truly felt at the time? You can’t eradicate history and it’s not healthy to pretend something wasn’t real when it was. I stand by every word I wrote back then and I know by being so brutally honest it has helped thousands of others feel less alone and more understood. Four and a half years ago my son was non verbal, smearing, screaming for hours, unable to read or write and needed 24 hour care. He was still in nappies at 6 and a half, having seizures, his behaviour was ‘challenging’ and every single day felt never ending.

He’s now 11. He’s still not toilet trained, still smears, now officially diagnosed epileptic, still has challenging behaviour and still non verbal. He still screams, he still can’t read or write or dress himself but something fundamental HAS changed: I no longer grieve for him.

I refuse to debate wether ‘grief’ is the right word to use for what I went through. I am the one that went through it and I know the intensity and depth of my feelings and the struggles both my son experienced, and in turn I felt as his mum and full time carer. The day I sat on that park bench and poured my heart onto paper was a day of truly understanding the reality of the pain, heartbreak and despair I felt. No-one has any right to undermine that unless they were living my life. My feelings and thoughts are not up for debate and never will be.

But things have changed now. A few days ago I took my son a trip to his favourite place. He now has a means of communication and I have learnt to listen. While he still can’t communicate verbally, after a lot of frustration and heartbreak, he found his own way of sharing his world through unconventional means. For him this is a unique combination of you tube, google street map, photos and using items of reference. He shows ingenuity and creativity daily as he tries to convey what he wants to wear, eat, and do. I have had, in turn, to be wiling to put my prejudices aside, be patient, and be willing to listen with more than just my ears.

Many misunderstood my grief as not loving my son. The opposite was in fact true. It was my intense love for him that made me grieve what I was missing as a parent and also the reality of what he will miss throughout his life.

But back to our trip and why I no longer grieve for my autistic son.:

He woke up on Saturday and made his way downstairs to ‘his’ chair. He pressed his iPads on (yes he has two!) and scrolled through his history of videos in YouTube until he found the one he wanted. He then used the other to go on google street map which is set to begin at his own home. Within minutes he had taken himself to the local train station on one iPad whilst watching local trains on the other.

I know my son and I know where he likes to go. Together we have a deep understanding now that has helped us both feel happier. He learnt that communication was worthwhile and I learnt the importance of allowing him to decide and control more about his life.

So I took him on a train to his favourite shopping centre to see lifts. On the train I watched as he flapped happily and looked out the window, holding his favourite teddy up so he could see too. He held my hand to get off the train and he took me to all his favourite lifts. We had lunch together in the food court and he dragged me by the hand and pointed to what he wanted. Then when he’d had enough we came home.

I’ve accepted that this is what makes him happy. He’s accepted that I actually have a use and by communicating other ways instead of screaming (which was his communication) he can achieve more.

I struggled but he struggled more.

Love helped us through. We both needed time.

In the four and a half years of us both needing time and changing I noticed something very important: attitudes to autistics are changing. We are much more accepting of difference now and the need to accommodate. Unfortunately though that acceptance still doesn’t seem to apply to parents as they journey through all the emotions involved in caring for, and living with their autistic children.

I am no longer grieving for my autistic son because I have come to accept and acknowledge that his life will always be different, as will mine, and that is OK. But it’s important that that is seen not as a ‘changing sides’ or ‘finally being positive’ but more about a natural journey of learning, patience and love. I haven’t suddenly become ‘accepting’ it was a process of coming to terms with the fact that my entire life will mean caring for my child and his entire life will involve others caring for him.

My son didn’t scream once on Saturday nor did he self harm or even show challenging behaviour. He was happy and so was I.

It’s still difficult at times, for both of us. But instead of sitting on that bench crying we now walk hand in hand past it as he flaps and laughs and drags me back to the car. He’d rather have fun at a lift or be eating lunch than walk around a park with his mum. That’s not something I grieve about now. It’s something I smile about instead.

Why It Appears I Let My Autistic Son Get His Own Way

As usual my son is the first to wake up. It feels like I have only just got to sleep. I probably have. As he makes his way downstairs he switches every light on he passes, takes a handful of teddies with him and finally settles down on his chair with his two iPads before screaming for the TV to go on. His presence defines the household. His demands can seem relentless and his screaming earth shattering.

To almost anyone who reads about him, comes into my home or works with him, the impression is the same: I let my autistic son get his own way.

What people see is just the tip of the iceberg and the reason I am writing this post is to show that what can seem on the surface one way isn’t always the case.

My son is ten, he has severe autism. He has no spoken language. He has epilepsy. He has a progressive genetic condition. Most importantly for this post he also has something known as violent and challenging behaviour.

Violent and challenging behaviour in children with additional needs like my son is much more common than people realise. The reason is simple: people don’t talk about it. There is a shame that comes with it, as well as judgement, embarrassment and fear.

My son used to injure me. He would kick, punch, pull my hair, bite, destroy things, scream, harm himself and throw anything he could get his hands on. He was frustrated, angry and violent, both to others and himself. I couldn’t ‘have words with him’ as his understanding was (and still is) that of a one year old. He had no concept of being grounded since he never left the house without me or went anywhere and taking things off him proved counterproductive as he made absolutely no connection to the removed item and his behaviour.

I needed to understand him better not punish him. I needed to realise what was driving his behaviours, even when he couldn’t tell me.

His behaviour was similar in school and home so this wasn’t simply a parenting issue or an education issue, this was a behaviour issue that needed addressed consistently and with a lot of patience.

So what changed?

Well firstly I realised my son wasn’t being controlling. He was anxious.

He wasn’t being hurtful or selfish when he injured other people or property, he was dealing with emotions he had no idea how to cope with.

He was confused, upset, had unmet sensory needs, frustrated at an inability to communicate and be understood and he showed this in the only way he knew how.

Behaviour is one of the biggest and most effective ways we all communicate.

He needed things to change and that change started with me. I put in place a very low arousal home life. To the outsider it may look just like my son gets his own way but realistically we are actually all getting our own way instead because the entire family is now safe, our property is safe, and most importantly my son is safe.

My son does get to wake when he wants, watch TV when he wants and choose his meals. He has access to his iPad from the moment he wakes and when he wants a bath I bath him.

People can think what they like but by responding to his natural body clock and going with the times that suit his natural rhythm he is calmer, happier and more settled.

By allowing him to watch the TV he wants I am actually calming him as he uses the schedule of a well know children’s channel to know when his school transport is due, when it is time for his bath and when mealtimes happen. This eases his anxiety and helps him make sense of his world.

By letting him choose his meals he feels much more in control and less anxious as he then knows not only what is coming but when it is likely to come too. Surprises make him anxious, and therefore more likely to be violent.

As for the iPad: well it turns out this is his very means of communication, his voice so to speak, and without this he has no means of showing me what he wants or even if he is unwell. To deny him that is taking away the very tool that allows him to be understood.

Then there’s the bath: this is fundamental to his mental well-being and triggers him to know it is time for winding down for bed. By making this a time for arguments or battles because the time wasn’t convenient for me was one of his biggest triggers for his behaviour. I was inadvertently saying to him that it was my way or no way, which made him feel invisible, out of control and helpless.

Low arousal for us is about letting my son know that he is understood, loved and accepted for who he is. This is his home and he needs that place of sanctuary and escape to be able to recuperate and relax in order to face the world. He needs to feel like his needs are met and that the atmosphere is one of calm and love not anger and frustration.

Many would say I am doing him an injustice by allowing him to ‘have his own way’. The argument is that in the ‘real world’ this is unrealistic. I understand that totally but my child’s ‘real world’ isn’t going to be about an employer, a spouse and following the rules of the road as a driver. My son will have carers, support workers and respite staff and it is vital that they are not attacked in the way I used to be.

Low arousal isn’t about letting your child dictate. It’s about understanding, listening, responding and meeting the needs of our most vulnerable children when they need it most. It’s about responding to the communication that the challenging behaviour and violence actually is and recognising that a child is struggling and needs help.

You might see a child appearing to get his own way. I see a child who is understood, calm and happy.

Until you have lived through what I have you may never understand. I don’t judge you for that, I just hope you never have to experience it.

A letter To The Parents Of A Struggling Child

Dear parent,

I know at times you feel so helpless and alone as you watch your child struggle. When we give birth and hear our babies cry for the first time from that moment on we want to help them and make everything right for them.

We don’t want them to be ill.

We don’t want them to be unable to eat.

We don’t want them battling for breath.

We don’t want them in pain.

We don’t want them to be the last to meet milestones.

We don’t want them emotionally or physically or socially struggling.

There is something about watching your child struggle that tears your heart in two. That feeling of uselessness, helplessness, having no control over things. That feeling that you should be the one to fix it all for them, comfort them, make it all better…but you can’t. That feeling of not being able to meet your child’s needs, whether that’s feeding them, holding them, carrying them or teaching them. That feeling of having to accept help for the sake of your struggling child.

I’ve been there too.

I know that feeling of failure well. That gut wrenching feeling as a parent when a nurse, therapist, teacher or doctor is the one that gets your child’s first eye contact or enables your child to say their first word. I understand that feeling of being robbed of something that should have been your privilege, not theirs. I’ve experienced that feeling of despair, the wanting to give up, the inadequacy that comes with having a child who is struggling.

I’ve cried so many tears and I’m sure you have too.

No-one wants to be the parents of the child who isn’t talking when all their peers are. No-one wants to be the parents of the child who has failed their six week check up, two year check up and even their pre-school check up. It’s a kick in the teeth for all the hard work and investment in your child when all they see is still a struggling child.

I know the fights. The fights to prove you are a good parent and your child’s struggles are not due to neglect. The fight to get your child help. The fight to be listened to. The fight for the right educational environment for your child to thrive. The fight for basic equipment to help. The fight for support. The mental fight to get through each day.

I know the fears: for the future, for their education, because they are so vulnerable.

When you are the parent of a struggling child it means you struggle too.

Too many judge.

Too many are ignorant.

Too many refuse to understand.

Too many ignore.

Having a struggling child is lonely. It’s isolating. It’s heartbreaking.

But I also know you are doing everything you can and more. Your determination, courage and strength shines through you. No-one could love, encourage or support your child more than you do.

You’ve got this.

My child struggles too. Their struggles may not be the same ones your child faces but that doesn’t matter. We are still in this together.

Stay strong my friend. There will be better days ahead.

Your child may be struggling but that’s not your fault. Hold your head high and show the world who you are.

You are not a failure for having a struggling child.

You are not to blame.

You are a wonderful parent.

Never ever forget that,

Yours,

A fellow parent of a struggling child.

My Disabled Child Is Still A Child

Before I had children of my own I genuinely thought parents pretty much stuck together. I mean after all aren’t we all in the same situation struggling with lack of sleep, worrying for our children’s future and tidying up toys every day?

Then I had a disabled child and I discovered that somehow that changes things.

Other parents no longer talk to me about standing on Lego because they assume I won’t relate since my child can’t play with Lego.

Other parents don’t mention all the activities their child does after school and how they feel like a glorified taxi driver taking their kids to dance, swimming and karate. They know my child isn’t able to do these things so they don’t bother to share about them with me.

Other parents don’t message me for advice even if my child is older than theirs because they assume I won’t know anything about normal child development since my child is disabled.

I could go on. I’m sure you get the point though.

There is an assumption by other parents and society in general that my disabled child is somehow not really a child like other people’s. They assume my parenting is nothing like theirs.

So let me tell you something very important: disabled children are still children.

They still have toys.

They still watch TV.

They still try and get away with more time on technology than they should.

They still turn their nose up at sprouts, throw toys in frustration and demand all our time.

They also outgrow clothes and shoes quickly, lose teeth at the same time as other children, go to school and learn, hate homework and catch the cold like other kids.

Yes every single child is unique, every life is different and my child struggles to do many many things other children do naturally (like speaking for example) but that doesn’t mean I don’t want to hear about your parenting issues nor does it mean I won’t relate.

You might be surprised to know we actually have more in common than you realise.

I have a disabled child. That may mean some parts of parenting are a little different to others but at the core my son is just a child like any other and I am a parent like other parents too.

Please treat me like any other parent. Please see my disabled child as a child just like yours.

We are all in this together and we have much more in common than we both realise.

Oh and my son may not play with Lego but I can still appreciate how sore it is to stand on. You have my sympathy there.