The Day Autism Kicked My Arse

On Monday 3rd July we woke up and got ready for school in the same way we do every day. We cuddled in bed, we got dressed, we ate breakfast, we put the bags in the car, we cleaned our teeth, and we left the house. Neither of the children mentioned the fact that it was their Dad’s birthday – because they had not been told. As far as they were concerned, his birthday had been at the weekend – on a lazy Sunday, when there was no school run to battle and no fixed schedule to keep to.

With all the stress I had been under gathering evidence to add to the application for Sawyer’s additional support funding (EHCP), I was trying hard to find ways to avoid any unnecessary upset. Even if it meant moving my own husband’s birthday.

I thought it was ingenious.

Until it wasn’t.

 

Monday 3rd July, 10:12
To: Statutory Assessment and Resources Team (EHCP)
From: Sawyer’s Mummy

Dear Statutory Assessment and Resources Team,

I am writing to tell you of an incident with Sawyer this morning that I think demonstrates the extra resources he requires at school on a regular basis. I would appreciate if you could add this to Sawyer’s EHCP application file.

This morning Sawyer suffered sensory meltdown. As is often the case, it was difficult to determine the exact cause of the issues, but we of course started to put things in to place that would help him, such as his ear defenders and helping him to remove his jumper (Sawyer’s sensory issues mean that he is often unable to determine that he is too hot). Sawyer’s father was supposed to take him to school this morning but because Sawyer was emotionally strung I decided to take him as this is the normal routine and I did not want to do anything that would disrupt him further.

Despite these extra steps to stave off complete meltdown, by the time we got to the school door Sawyer was very distressed and did not want me to leave. I gave him some extra time to calm down but eventually I had to leave and it took the school head teacher, his class teacher and the class teaching assistant to stop him from running out of school, to lock the door and calm him down, etc.

I called the school an hour later and he had only just returned to class after being too highly strung to be allowed in to the classroom until then.

I would appreciate if you could acknowledge receipt of this email.

Best wishes,

Sawyer’s Mummy

 

Monday 3rd July, 16:43
To: Statutory Assessment and Resources Team (EHCP)
From: Sawyer’s Mummy

Dear Statutory Assessment and Resources Team,

I am writing to follow-up my email sent this morning containing information on an issue Sawyer faced at school this morning.

I received a phone call this afternoon from the Head of School. She had been one on one with Sawyer for well over an hour because he had gone in to complete sensory meltdown and was a danger to himself and others. Sawyer was running to and from one end of the school as an ‘escape’, with members of staff having to leave their tasks to ensure he did not become lost somewhere within the school.

Sawyer was unable to return to class and and I had to collect him early from school. It took me and the head teacher 20 minutes to coax him out from under the table in her office and move him the 20 feet distance from school to my car.

Sawyer being removed from class (even school) is now happening on a regular basis, as detailed in his application. I am writing this today to show a classic example of the issues the school faces, and continues to face, each day with Sawyer.

There simply are not the resources available in the school to give him access to the curriculum – and most importantly – to ensure his safety.

I would appreciate if you could acknowledge receipt of this email, and add the details to Sawyer’s file.

Best wishes,

Sawyer’s Mummy

 

After 20 minutes trying to convince Sawyer that he was safe and that he could come home with me, it became clear that I was going to have to remove him by force. With my 4-year-old daughter trailing dumbstruck behind, I scooped Sawyer up in my arms and carried him kicking and screaming to the car. The head teacher followed dutifully, carrying school bags, lunch boxes and my own handbag. When we got to the car I sat him in his seat and somehow managed to close the door (thank you, child locks). The head teacher and I exchanged sympathetic looks, and I’m pretty sure it wasn’t just me who was trying hard not to burst in to tears. I opened my car door and slumped down in my seat, the sound of hysteria still filling every inch of our world. Half a second later I turned around to see the rear passenger window open, and Sawyer half escaped, clawing his way out of the car screaming something about needing to get back to maths. At that moment his sister burst out in loud and uncomfortable tears, another jab at my heart, reminding me that Sawyer is not the only one who suffer from his autism.  A further 15 minutes later and he was calm enough to drive the 5 minutes home, where I then spent a further 20 minutes trying to convince him to get out of the car.

In the evening that followed I sat and thought about the application for EHCP (additional support funding) we had submitted two weeks before. Would it be enough? What if they didn’t accept? Would this torment continue forever? Is he even safe in school? To reinforce that last point – when my phone rings and reads SCHOOL on the handset, my blood runs cold. I anticipate a call to say he’s escaped and they don’t know where he is. Or that he’s stepped backwards off the playscape and is being transported to hospital. Or worse. For me, Sawyer’s meltdowns do not end when the meltdown ends. And they never will.

8 days after autism kicked my arse, I received a phone call from the START team to say that Sawyer’s application had been approved at panel. They would be undertaking a full assessment of his needs, with a view to putting an Education, Health and Care Plan in place for him. I was elated, exhausted, upset and excited. Finally, some good news.

But once again,  the battle was just beginning.

 

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