I am an unpaid carer to my 11 year old autistic child. To the untrained eye I look like any other parent, parenting their child and dealing with obstacles that come along. 

But if you look a little closer you will see that the unpaid carer is ALWAYS doing the things other parents occasionally do. Your child’s one melt down a fortnight is my child’s one a day, perhaps more. Your one form to fill in is equivalent to 10 of mine.  

I am his report writer, secretary, project manager, expert in SEN Law, case worker and much more. 

Although he is academically able and you’d be forgiven for thinking he wasn’t autistic as my chappy blends in well due to masking. I knew he would not be okay in state mainstream high school and would need a lot of support or a more appropriate placement. But there’s very little option for the academically able autistic kids nationwide. 

I set about applying for an EHCP (Educational Health Care Plan) which is a legal document that assesses what he needs and then puts plans in place to meet those needs. I applied in November 2022 and the correct final was done February 2024. 

The problem with this is that the local authorities’ assessments are not long enough or detailed enough so if you really want your child’s needs met you have to pay for decent assessments and reports.  Many SEN parents also believe that LA assessments are downplayed and children’s needs are minimized due to cost restraints.  So, we had to fund our own private assessments.  

I have written endless amounts of reports, replied to several emails, had meetings, done courses, spoken to many other SEN parents to get advice. I have stayed up many late nights trying to get EHCP work done. 

Artwork supplied by Nicola.

She writes: ‘Picture of tears – This picture represents all the tears I cried, within the tears you can see some text – this is the judges order saying we won. So these are tears of joy.’

We got our first Final EHCP April 2023 but it didn’t fully address all his needs so I appealed the EHCP which meant I had to prepare for Tribunal. I would not wish Tribunal on my worst enemy. It was a hideous experience. 

I have experienced so much professional gaslighting (that’s a whole different story). 

  • Organizations not following SEN Law. 
  • Professionals gossiping behind my back. 
  • Reading unprofessional and passive accounts about my child. 
  • Constantly misunderstood. 
  • Rarely had my perspective understood. 
  • Sat in meetings with many professionals and felt I was the most professional person in the room. 
  • Read emails from one agency to other stating I was challenging. 

There is a narrative that is perpetuated amongst educational services that parents are a problem, we are demanding and we create work for professionals. I am not the problem! And no other SEN parent should be the problem. I am fighting for my child to have an appropriate education where he has the same opportunities as his peers and is in a place where he can access that education without being overwhelmed and dysregulated. The local authority have a legal duty to provide that. So I am not the problem. Every professional who doesn’t know the law is the problem and every politician who won’t provide more funding is the problem and staff who behave immorally are the problem.   

Not me! 

The EHCP process has had a profound impact on me. It has been the worst most stressful year of my life. Some mornings I woke up and could not believe that I wouldn’t be dead by the end of the day. I was never suicidal but sometimes I felt so heavy I didn’t trust that I wouldn’t break and then be gone.  

I had never-ending panic attacks where I would over breathe and not be able to catch my breath, my hands would spasm or go numb. But tribunal paperwork and reports needed writing. Only I could do them.  

There were times during this awful experience that I would call Leeds Carers and just sob down the phone for 30 minutes while someone really kind and understanding held my sadness and gave me space. I am forever grateful for that. 

A study was done and it was reported that parents of autistic children have the same amount of cortisol, the stress hormone in them as combat soldiers and holocaust survivors.  Because you never know when the bomb is going to drop. 

Many times I have likened this process to the game of Traitors. I have no idea who is faithful and who is a traitor and I see the faithful’s turning. Other times it’s been a game of chess, working out which move next.  I have a strong moral compass and try to live with integrity, grace and kindness. I soon learnt that you cannot play the EHCP Game like that, you have to keep your cards close to your chest and practice your poker face. 

I am pleased to say that we got an EHCP that reflects R’s needs in the end, although it took fighting the LA in court. R will be starting a small mainstream high school in September. Us SEN parents will never sit back and relax though, we need to be ever ready for the next bomb to drop.

My Carers Story is an ongoing project by Carers Leeds to capture the stories of unpaid carers across our city. If you are interested in taking part, please email Juliet.