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.

Why Would An 11 Year Old Want To Marry Her Brother?

Most 11 year old girls find their brothers annoying. My 11 year old daughter actually wants to marry her brother! Why?

Well at just eleven years old my daughter already knows her brother will need life long care. While other children her age are out playing with friends, having time out on video games or at after school activities she’s bathing her brother, making sure he is dried, helping dress him and reminding me to get his medication.

She’s never known anything else despite her brother being stronger, taller and at a different school to her.

She knows he can’t speak but knows exactly how to communicate with him. She plays with him, reads to him and soothes him when he cries. It’s beautiful but also heartbreaking; innocent but also concerning.

At eleven she knows already how vulnerable he is. She knows he will live at home and never be independent. She knows the chances of him learning self care skills like toileting, dressing, cooking and washing himself might never happen. She knows he will need full time care all his life.

She knows he won’t marry and she wants to marry him to make that happen.

As she used a flannel to gently bathe him I overhead the following:
‘One day I will marry you. Would you like that? (She waited for him to smile back and sign yes). That way you will be ok.’

I haven’t asked her to do any of this. She actually has more than enough of her own struggles to be contending with (autism, anxiety and eating issues to name a few) but her empathy and close bond with her brother is so natural and heartfelt.

Yet when I asked if she could access help as a young carer I was told she didn’t meet the strict criteria: she apparently wasn’t caring for him enough! Other than school and just three hours a week when she has a carer take her to activities (because I can’t take her anywhere due to having to care for her brother) she doesn’t ever get a break. Summer means seven weeks 24/7 with her brother as he gets zero respite in summer too.

She has witnessed seizures that have frightened her, surgery that has terrified her, meltdowns that have saddened her and self harming that has broken her heart…yet she was rejected from mental health services several times.

Of course she can’t marry her brother and neither should she even want to. She should have ambition, friends, a care free childhood and growing independence, but instead she worries if her brother will be ok when he gets older.

Why would an 11 year old want to marry her brother? Because she loves him so much that she’s terrified who will care for him when he’s an adult.

That’s not something any child should worry about but when she already sees how little support he gets now is it any wonder she worries for his future?

The fact any 11 year old girl is asking to marry her complex needs brother in order to know that he will be cared for should be a wake up call to us all. Her brother deserves better and she does too.

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.