The Fight – Battling the System as the Parent of a child with SEND

Boy stands in a lonely field. Autism parent piece.

Every parent knows the fight. Autism parent.

It starts as soon as the children wake – if they slept – and it continues until the moment you collapse on the sofa, breathing a sigh of relief.

It’s “Please eat some breakfast!” and “Where are your shoes?” and “No, don’t push your sister!”

It’s remembering the right cup and the wipes and Mr Bunny. It’s getting everyone out of the house on time.

It’s singing Twinkle Twinkle for the thirty-eighth time. It’s keeping patience in the long lonely hours of the night. It’s holding it together when your child is sick or injured or heartbroken, when all you want to do is sob with them.

The fight is an endless parade of minuscule battles waged from one moment to another. Some last for mere moments, others drag on, lengthening the hours until bedtime. It’s the profound, all-encompassing knowledge that you are ALWAYS responsible, ALWAYS on duty, because true innocence and helplessness count on you to keep its world spinning.

On the good days, you go to bed and sleep, content. The tiny people that you love more than existence are peaceful and happy.

If you are a parent, you know the fight.

If you are a special needs parent the fight goes on, just the same. Hundreds of little triumphs or disasters, in the space of a few breaths. You know the fight.

And you know the war.

Forms line up like battalions, twenty pages long. DLA and ECHP and SLT and OT. A form for the development centre, a form for extra nursery funding, a form for the Paediatrician, a form for the Preschool forum, a form for the GP.

The same questions, over and over, the same answers, time after time, sometimes, even, the same people asking, exactly like the week before. Please explain how your child struggles with communication. Please tick all that apply.

A bombardment of phone calls. Where are the blood tests? Why is there no funding? Where are the referrals? Why has this taken so long? Who can I speak to next? I am afraid I will need to take this further. The same secretary, the same dull voice, the same answer again – like banging your head against a wall.  “I’m not sure why the referral isn’t through yet. We haven’t received any results today. I’ll get the doctor to call you back.”

Please, I am begging you. Find my son’s blood test results. I cannot live with this vice tightening around my heart for a moment more.

These battles are not fleeting. These battles are never easily won. They are a life-long war of attrition, an endless slog of walls to climb and hoops to jump.

Regiments of professionals line up – the people who are meant to help, the supposed answer to the question ‘You and whose army?’ But there are no allies in this war, no one ever really on your side. The doctor tells you one thing, the speech therapist the opposite. The letters sent between one office and another get lost in the void and no one cares enough to check. No one cares enough to fix it. It’s not their problem that the referral put through in October, still hasn’t been received in June.

No one cares but you.

Some days the fight is too much for us all. Some days, bedtime cannot come soon enough. But we keep on going. We ALWAYS keep going. The reason is simple – love.

There is no force in the world greater than love. There is no love I have known greater than my love for my children.

Sometimes, the disgraceful injustice of the war threatens to overwhelm me. Sometimes, I could scream and rave and sob about the unfairness, the discrimination, the lack of compassion.

Sometimes I feel like I Just. Can’t. Keep. Fighting. Any. More.

And then I pick up the phone, I dial a number, and I speak.

“Hello, I wonder if you can help me? I am trying to chase up a report for my son. We were meant to have received it many weeks ago and we really need it to start the ECHP process…”

The fight is hard. The war is hard. We all carry on. I carry on because if anything deserves my time, my effort, my unadulterated passion and drive, if anything in this world is worth fighting for, anything at all…

Then it is him. He deserves an army.

So – I keep fighting the fight. I keep battling through the war.

I am his army.

Battling the system as the parent of a SEND child

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13 thoughts on “The Fight – Battling the System as the Parent of a child with SEND

  1. This is a good post. I come at it from two angles, that of a parent and that of a person who has had lifelong issues which I now believe may be down to me being autistic too. The battles you describe are harder for me because filling in forms etc overwhelms me to the point of illness. I have to ask for help but I’m not ashamed to admit that because I am a mother and I would do anything to make life a little easier for my son. Every day I have my personal battles to deal with and then my son has a bad day and once I’ve dealt with the fallout from his overwhelm, I shut down. You sound like an awesome parent and those who have autistic children will be able to identify with this post. Just remember that every battle is helping your child to be the best they can be. On those days where you feel you have nothing left, remember that they chose you to be their mother because you are the best one for the job. Nobody will fight with such passion as you do. You’re doing a great job.

  2. These posts are precisely why I follow your Blog and feel inspired. The fact that I am currently fighting that fight makes this post so relevant to our own story. I’m currently in that stage with the blood tests, reports and appointments it’s exhausting but we do it because we are our child’s best advocate and fight on their behalf.
    Thanks so much for sharing, I needed this after a tricky school run x

  3. So very well written. I cannot even begin to imagine how difficult this all is. You do an amazing job of supporting him through it all. Form filling is horrible at the best of times but to have to keep repeating yourself is just exhausting. Sending hugs x.

  4. A beautiful post that resonates so much. It takes me back to my sister’s fight for my nephew and the hours she spent to get him the support he deserved. Sending you hugs and best wishes.

  5. Such a heartfelt post hon *hugs*. I can’t even begin to understand the frustration and heartache you’re going through. I admire your strength and devotion to keep on going all in the name of the love you have for you gorgeous boy. Wishing you both all the best on your journey! Xx #KCACOLS

  6. I have been where you are. I feel like i have had to fight for my son all of his life. He is 18 now, but there are still battles to face and I will always be there to fight them for him. Good luck with all of your battles, you are an amazing mum x

  7. Another post that helps to give insight into the challenges you face every day…not just you but thousands like you. The one thing that stood out to me was your mention of ‘where’s the compassion? I often think the world would be a different place if there was more compassion and thought for the person stuck in the system. Although I only have glimpses of the fight you describe and the fight my friends face on behalf of their kids…I see the same challenges of dealing with the ‘system’ in my debt advisor role for those who are trying to get what they are entitled to but they are stuck in a never ending cycle of bureaucracy and ineptitude and ‘computer says no’. Keep fighting Danielle. You give a voice to thousands out there who are fighting the same cause #kcacols

  8. This is a very insightful post. As a parent I know the struggle of being always on duty and the constant fighting but oh my gosh having to deal with the bureaucracy of a system that should help not hinder you. Keep fighting my lovely. He is worth an army and there’s no better army than his mother!

    Thanks for linking up with #KCACOLS and hope to see you again soon x

  9. Brilliant post, hugs.

    I’m his army too, without me and the hubs I’d dread to think what would be happening for my son. We have to keep fighting even when we’re tired. We’re all they’ve got sometimes. It’s scary but we’ll get there x

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