A change in direction.

Last week we received some earth shattering news. Kiddo has been accepted into a fabulous special educational needs (SEN) school not half an hour away from us. He will be starting at pre school level which is just exceptional. It doesn’t happen. Spaces are so tight that children aged 5 and over need to be prioritised. But last week a panel of 3 people we had never met, 3 people who had never met the kiddo or seen him in action, read an application and decided he was worthy of the space. I poured blood, sweat and tears into that application. And here’s what it did to me.

The last year has all been about fighting. Fight. Fight. Fight. But fighting what you ask? I fight to make people believe me. Seems ridiculous doesn’t it? But it’s true. Our family live in a world where “seeing is believing”. Unless your concerns have physical proof and are not just anecdotal you stand very little chance of getting your voice heard. And why is this? Because the system is so stretched, it is so underfunded, that professionals just don’t have the time to deal with situations that they don’t witness themselves. Now as you can imagine, these paid professionals are not “live in” posts, so somehow you have to find a magical way to demonstrate your need. To show them your concern. To make them understand what happens in your home at 3am when they are sound asleep in their own comfy bed. And why do we fight this fight? To get the support we need. To get the medication we need. To get the school and education we need.

Our application for this school started back in June. I decided to write the application myself rather than ask the Kiddo’s school to do it, simply because the process is quicker if a parent applies themselves (don’t ask me why, it just is). So I started to write. And write. And write.

I would put kiddo to bed at the end of a long day and then sit down to write more testimony, to write more evidence.

And I wrote like my life depended on it. 

The stress was intense. My hair was falling out and my scalp was infected. I had developed asthma and that had deteriorated. My allergies were sky high. And I was sleep deprived. But in my heart I knew that this application was the one. The one with the potential to change our family’s life. So I poured more passion into this application than I did my dissertation. 

I was lucky. The 9 months previous to this application the kiddo had been assessed by many a professional. We had reports that numbered well into double figures. So I was able to pull out details from these. And I knew how much value they held. These words from people who had spent as little as ten minutes with my darling child (quite literally, it’s amazing) held more power and more sway than mine as his parent. My words as the expert on my child were not to be considered as highly as those of the professionals. So it was imperative that every word in every professional’s report was perfect. That it did not contain one error in detail. And that was one of the most exhausting aspects of all.

I read these reports again and again, until the words were dancing in front of my eyes. I felt like I was in that scene in Winnie the Pooh. You know, the heffalumps and woozles song? Scared the life out of me as a little child. And here I was as an adult with brightly coloured words dancing around my head into the late hours of the night. The song shouting “beware! Beware!”, trying to terrify me as I read and wrote. But I didn’t give in.
It had taken so much to get to this point. The phone calls. Oh the phone calls! Every hour of every day. To every support service known to man. Pushing people for decisions, reports, diagnosis. And writing this report was the beginning of the end. Now was not the time to fall.

After weeks of eye rubbing, mental exhaustion and downright stubbornness the report was submitted. And all I could do was wait. The fate of my helpless little boy lay in the hands of a panel of people totally alien to me. I’d never met them. I don’t know their names, or the colour of their hair. The only advocate we had was one lady. One lady who sat down with myself and the school and the largest trail of paperwork I ever did see. I told her my story. And I told it with passion. There were tears, there was anger, there was desperation in my eyes. And she saw. She saw it all. I felt like I was in one of those scenes in Harry Potter where the characters re visit previous life events and witness for themselves how the tragedy had begun to unfold. I took this lady with me on the best journey I possibly could. Three hours long she listened to me. And she truly listened. And then the meeting was over. It was done. There was nothing more that could be done.

The weeks passed. The months passed. The deadline approached and my anxiety grew far and wide, engulfing my whole person as I waited. I rang to ask for a decision, his turn to go to panel was delayed. And then one afternoon, out of the blue I received a phone call. One I will never forget. For this is another milestone for us. I thought I had misheard at first. So I asked again. I heard again. 

The tears came hot and fast. I had no control. Emotion took over and I lost my composure. I had waited over a year to hear those words. “We would like to offer (Kiddo) a place at **** special educational needs school”. It was a dream. It had to be. All those hours of chasing professionals for reports. All those weeks of desperation to get assessment dates for a diagnosis. All those discussions with the GP about my own health and deterioration. All those hospital appointments with the kiddo. All that writing. Writing into the night when the moon became my only friend. When the glow of the nighttime became a frequent visitor as I sat at my laptop. It had all been worth it.

It was all worth it. 

So very soon we embark on the next chapter of our incredible autism adventure. It won’t all be plain sailing. There is a huge shift in routine to come, new environments, new faces, new places. But we’ve done it before and we will do it again. And we are right beside you kiddo. Always.

Thanks for reading,

Danielle 

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