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.

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. 

How do you respond when you hear your child has autism?

Gwynne - 20151003 -21 - high

How do you respond when you hear your child has autism?

We are all unique. It is what makes life interesting. Yet right from childhood we are expected to fit in and become the proverbial square peg in a square hole. We are programmed to react sad to bad news, excited and happy at good news and relief at hearing something is either not as bad as we thought or if it confirms what we have been expecting. As complex people we can even experience all that in just one go and often remain composed and professional on the outward appearance.

I have twice sat in rooms with various professionals and been told my child has autism.

How am I meant to respond?

Should I cry because my world has just turned my upside down; so many dreams I had for my child shattered as they have just been a life long diagnosis that could potentially limit them?
Should I sit in silence remaining composed while I am told all the deficits and difficulties my child has?
Should I look the person in the eye while they talk to me about their assessments that day and what other professionals have said about my child?
Or should I be relieved that my child just thinks a different way to others and count myself blessed he is just the same beautiful and loving child I brought in an hour before?

Am I wrong to keep my feeling to myself and keep the news confidential? What if I feel I want to share with immediate family only for support? Is it acceptable to update my social media with such news right away?

Should I ring a help line, search the Internet or immediate join a support group? Is there books I should real or pamphlets I take away with me?

What can I do about this? Should I be trying to change him or should I accept this? Should I be investigating private therapies or wait for further investigations or referrals?

What will this mean for my child’s education? Will this affect his health? Will he ever speak to me? What about the future?

While all this and so much more ran though my head on both occasions I heard myself thanking the person, shaking their hand and then finding my child to take them home.

I am never really sure if they expected me to cry. I wonder if they felt I was not hearing what they said. Maybe I even came across as uncaring or in denial? Would professionals have slated me for telling people, and even worse updating my social media that very day?

This week I heard more news on my children. Once again I found myself thanking the people concerned and shaking their hands. It seems the right thing to do. I have been programmed to be professional, not take up their time, and be dignified.

But we are all only human.

Never, ever let anyone tell you how you have to respond to that type of situations. It is ok to cry. It is ok to grieve. It is ok to retreat, tell the world and everything in-between. It is ok to feel trauma. It is ok to feel numb, or even relief.

Hearing your child has a life long condition with no cure is tough. Yes your child is still the most amazing, wonderful, beautiful child you took in to the clinic that day but things still change.

They change. You change.

However you respond when you hear your child has autism is the right way. There is no wrong way to respond. Even if you leave with a huge grin on your face dancing all the way home that is still ok. If it takes months of crying non-stop after the event that is also fine. You are all right. You are human.

In time how you feel changes. Then sometimes, like I had this week, you may have a co-morbid condition added on too. Then the whole emotional roller coaster can start all over again.

We are all unique. Your child is not a square peg but let me tell you something…you don’t have to be either. Be who you are. React how you react.

How do you respond when you hear your child has autism? There is no wrong way.

Extremes of emotions on holiday

20140410-223026.jpg

20140410-223054.jpg

20140410-223104.jpg

We all experience emotions all the time. And children with autism are no different. But where we can usually calm ourselves down when angry, understand the need to slow ourselves down and end a game rather than becoming hyper or even soothe ourselves when sad, this is an area where people with autism can so often struggle. They find regulating emotions so difficult and can often swing from one extreme emotion to the other very quickly leaving everyone around them puzzled and confused.
This week I have seen this become an every day reality in my non verbal son. We have been on holiday this week in a caravan. No matter how hard we try, his routine has had to change. There is no school on holiday and at times this has been a massive challenge for him. He has used the iPad to show me pictures he has found of anything school related in an attempt to question why he isn’t going there. This is not helped at all by the fact the only thing he will ever let us dress him in is his beloved school uniform. He doesn’t ‘do’ holidays. He ‘does’ school. So even in a caravan 50 miles from home he has still been looking for his school taxi and pointing to any similar looking car we pass and screaming.
Every day has been like walking on a tightrope. He doesn’t ‘do’ wind down and chill. He does ‘get up and go’ from the second his eyes open to the second the melatonin finally kicks in and he drops off for a little sleep. And for a non verbal child he can be extremely demanding and loud.
Internet is limited where we are. And boy has he let us know how this has frustrated him. His favourite interests on the iPad are you tube videos of lift doors opening and closing over and over again, and google maps. And he has been most unimpressed that you tube and google do not work as he expects them to. You can’t explain terms like signal or coverage or wifi to him. All he knows is he presses the buttons and mum makes them work. So mum is at fault. And he then throws the iPad at me, scratches me, bites me, hits me and screams. Holiday? What holiday? Autism doesn’t take a holiday.
So you take him out and keep busy. But this isn’t the swimming pool he normally goes to. So you have to literally drag him screaming through the corridor to the changing rooms because he does not understand that other places can also be swimming pools. And he screams at the look of the different changing rooms. And I start to question if all this is worth it. The moaning, the screaming, the ‘challenging behaviour’ seems endless.
But then he gets in the water and immediately changes to the hyper, laughing, splashing, happy boy. Within seconds it was like someone switched my son. From one extreme emotion to the other just like that! And then getting out he switched right back, instantly his body got out that water.
The same with soft play. He loves soft play. But nope, this isn’t soft play to him. Because it isn’t one of the ones we normally go to back home. So you pay money to carry in a screaming five year old while everyone looks at you and quickly turns away. If only this child would wear his autism t-shirt at least now and again. But no, he has to wear his school uniform which just somehow makes it all look worse. It must look like I am manhandling a child on some school trip to the seaside. Who would believe we are actually on holiday trying to have some down time? But once in and he realises that this is a soft play, the tears stop, the flapping and chest beating starts again and he giggles like he is the happiest child you ever met. If only the scratches and pinches he gives me could vanish as quick as his tears!
Going anywhere in the car this week has seen him in default mode of whine. ‘Uh, uh, uh’ has been on constant play since the minute the car pulled up to the caravan park. It is a dull moan of wanting attention, of saying in his own way that things are not ‘right’ for him, of making it clear he isn’t happy. But the whining barely stops. So you would think this child was hating being in the caravan on holiday.
Yet one minute later he is out on the decking flapping, running up and down, laughing hysterically at a dog barking or cow mooing. Or waving his arms in complete ecstasy because he is being pushed in a swing. There is no in between just now.
So I feel like I am on that swing too. Except it never stops. We have the highs of laughter, hyper ness and flapping and chest beating followed immediately by screaming, moaning, scratching, kicking, pinching and throwing. We have the sheer innocent excitement of seeing the seaside followed immediately by the danger of him running straight out to the sea. Unless he is strapped in a car seat, buggy or swing there is no sitting down. There is no watching a dvd or looking at books, or colouring in like his twin sister. It’s just all about him. It’s all go. It’s exhausting and draining. For everyone of us.
In fact I need a holiday to recover from the holiday! Autism doesn’t take a holiday. It is extreme one way and extreme the other. Isaac can’t regulate his emotions. And right now I am struggling too. If you asked me how the holiday was going I would have to answer with ‘sometimes wonderfully, sometimes dreadfully.’ If only there was a happy medium. Now that really would be a holiday!

20140410-224025.jpg

20140410-223927.jpg

20140410-223147.jpg

20140410-223127.jpg