Distraction of Adventure #1

Sawyer’s EHCP planning meeting will take place in early September, and the anticipation is difficult to stomach. Despite our positive meeting with the Educational Psychologist, I find myself poised and ready for action, my armour still very much in place. I feel I am staring at the No Man’s Land of autism – desperately hoping to see poppies.

There are many downsides to this funding process landing smack bang in the middle of the summer holidays, not least of which is the school being closed. But as with most downsides, if you look hard enough then you can generally find the upside hiding obscurely somewhere in the hedgerow. And I found it. In our case the upside to this long summer break, has been the distraction of adventure.

A few weeks ago we set off on our Spanish getaway. Any change of routine is difficult for Sawyer, and so a lot of forethought and preparation had gone in to the planning of this trip. I booked Meet & Greet parking at the airport so that there would be no waiting around, no shuttle buses to catch and no extra time added to our journey. Happily, it worked a treat! We pulled up in the car park, drove to our bay, dropped the car key off at reception, and that was the end of that. Before we knew it we were inside the terminal and ready for the real fun to begin! Busy spaces like airports can be a sensory nightmare for Sawyer, and so his ear defenders were a saviour as we made our way through check-in and over to security. With Sawyer stood behind me, instructed to wait for my call, I walked through the metal detector without issue, and was ushered over to the left hand side to collect my belongings. I turned with a huge smile to Sawyer, and nodded at him to follow me through the detector. We had been very cautious to ensure he had no metal on him at that point, but what we hadn’t realised was that random spot-checks were a thing – and unfortunately for us, Sawyer had been ‘spotted’.

The Robot Security Man ushered Sawyer over to the right hand side to stand in a queue of people he did not know. I immediately approached and asked if I could stand with him, to which I was plainly informed it was not permitted. Now, is it me, or should ANY 6-year-old be accompanied by an adult through a process like that? Let alone one who has autism. I calmly explained the situation and, irritated, Robot Man told me I could stand with my son but that I would have to go through the security check. Swiftly, I hid my explosives in my boots and hoped for the best.

Who remembers the days when being flagged at airport security meant a quick pat down on the way through? My Dad has Type 1 Diabetes and I swear even with a bag full of needles and drugs he was generally waved through without issue. These days there’s a Tardis. A bloody Tardis, I kid you not. But luckily Dr Who seemed incredibly sweet, and when I approached him to explain our situation he crouched down and softly, calmly explained to Sawyer that the Tardis was in fact just a photo booth, and that he only needed one quick picture. I wish I’d taken Dr. Who’s real name so that I could thank him properly. Let’s just hope one day, somehow, he reads this.

Finally, we were through security. Hot and bothered, but just as excited, we made our way along the corridor. I had called my sister (who was already through on the sensible side) and asked her to grab the children drinks so that they could refresh once we found them. Everything was suddenly back on course.

And then the fire alarm went off.

 

 

 

Lifeline

I hadn’t realised how draining the EHCP process had been until we saw the Educational Psychologist a few weeks after the application was approved at panel. Although compiling and writing out evidence had been time consuming, I was so determined to get the points down clearly and thoroughly on paper that surprisingly, I didn’t find myself emotionally tied to the pages.

The initial application for assessment was 16 pages long, not counting the substantial professional reports, assessments, school documentation, photographs and so on. The school SENCO and I worked hard for several weeks to make sure the application was thorough, well put together, and easy to read. So I was surprised when, a week after the application was deemed successful at panel, I received a request for further evidence. What more could I possibly say that hadn’t already been said somewhere in those 16 pages? What more did they want from me – actual blood? Then for fuck sake just take some already! We arrived back from our family holiday at the end of July, and the request was sat on my kitchen table when I arrived home. The following day, surrounded by half-unpacked suitcases, I sat and wrote (by hand, because apparently the START team like to waste a) paper, and b) my time) out the evidence all over again. Only this time I put clear bullet points, hoping that this method would mean that someone on the receiving end would actually stop to read them. I sealed the envelope, and off it went. Yet another package full of facts about my son and his additional needs. And then I had dinner.

10 days later, the Educational Psychologist (EP) came to our home to collect the evidence he needed to write his report. He arrived exactly on time, and warmed to Sawyer incredibly quickly (which is easy – cuz Sawyer’s awesome). To my surprise he spent the first hour just chatting to me, asking questions and getting an idea of what sort of child Sawyer is, and what his issues have been. He made notes throughout the conversation, really listened to what I had to say, and made some sensible suggestions for things we could try that may help Sawyer’s needs at home.

During that conversation I reiterated many of the issues that had already been written down over the first two reports. They were same words that I myself had formulated in the first place, yet somehow now they seemed different. I let the words enter my brain via my ears for the first time. Suddenly the facts were Sawyer’s struggles. The evidence became his discomfort. And the proof became his pain. Suddenly, in a moment that I can no longer pinpoint, I felt exhausted. The gravity of what I had been repeating for so many weeks, months, YEARS suddenly fell down hard on my shoulders and for a moment I forgot what the goal was. I wanted only two things then: to cry, and to sleep.

The EP went on to play some games with Sawyer, and had him take part in some tasks so that he could get a feel for his abilities. He spent hours in the house with us, and it became clear to me why the local councils keep these teams of professionals so tightly guarded. They are experts, and as such their time is expensive, and the reports they compile take time. The rest of the meeting went by in a blur, and I felt neither confident nor unconfident as he stood to gather his things.  But then he said something to me that will stay with me forever. He told me that he thought my knowledge and understanding of Sawyer’s needs, and of how autism affects him, was impressive.

Impressive.

It isn’t a word that I’ve ever really thought could be applied to me, since I’m fairly average at almost everything. Yet there I was, stood in front of a specialist, being told that my knowledge and understanding was just that. And on a subject that I care more about than any other – my child.

I had been so worried in the days that lead up to his visit. Worried that he wouldn’t be able to see Sawyer’s needs the way that I can, and worried that I had made a mistake by convincing him to visit Sawyer at home rather than delay until September so that he could be assessed in school. All of those issues swelled in brain as I showed him to the door. The last thing I heard him say was that he would report that Sawyer needs 1:1 support in school, and that he would advise that an EHC Plan should go ahead. My ears were ringing and my hands shaking as I smiled and closed the door behind him.

Did he just say that he agreed with me?

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.