Meet Zac - Zac is 10-years-old, has two sisters, and loves music, swimming and cuddles. Zac was diagnosed with autism at the age of three.

Zac has a particularly complex form of autism - he is non-verbal, doubly incontinent and his tip-toe walking has affected his gait.

This short film tells the story of Zac's diagnosis, the huge impact on his family, his parents coming to terms with what complex autism means and how the best option for their son is residential care and education, and their determination to get a place for Zac at Prior's Court.

The film also explores how the work of Prior's Court and our dedicated staff team is already having a hugely positive impact on Zac's life, and on his family.

Complex autism and us - Zac and his family's story transcript:

This is Zac.

Zac is 10 and has two sisters, Georgia and Rosie.

Zac loves to swim, loves cuddles and loves music.

Zac, a residential pupil at Prior's Court, was diagnosed with complex autism at the age of three. 

This is Zac, and his family's, story.

Suzanne, Zac's mum:

"He was my first child, so I didn't really know what I was doing, I didn't know what to expect, but I could tell that he wasn't developing normally. He would never look at me, he just cried all the time, I couldn't comfort him. And then as he got older he just missed every developmental milestone - he didn't sit, he didn't crawl, he didn't walk he didn't talk. And it took me quite a long time to convince anybody that there was an issue. There was a very much an attitude of "he's a boy, boys develop later, he'll catch up". I knew it was autism. I didn't know how severe it was, I didn't really know a lot about autism, but what i did know was influenced by what I'd seen on the media so it was very much a higher functioning kind of autism. And you want to believe that your kid's okay."

Matt, Zac's dad:

"He has physical difficulties so his right foot, he's tiptoe walker, but his right foot is almost like, you know, at an angle so it affects his gait and how he walks. And his achilles is just, pretty much, is so shortened. So physically he's, you know, he is impacted massively by his autism. And yeah mentally,Ii mean he's a sharp bright boy, but obviously because he's not able to communicate or be verbal for a lot of the time, you know, it's difficult to know what's going on."

Suzanne:

"With autism you get no help there's no solution, there was no treatment - we literally were told "yes he's autistic, there's nothing you can do about it, there is no treatment, here's a leaflet, off you go, find a support group if you're lucky" - that was pretty much it."

Matt:

"Going out to a social event, we can't ever switch off or engage with people, because the whole at time we're doing a risk assessment. So going out to those kind of events are hugely stressful, so we've tended to just avoid them, or one of us might go with one of the girls, but it means the family is always fragmented, it's very difficult to do anything as a five. When you have a child on the severe end who is doubly incontinent, non-verbal, often in extreme anxiety, unable to tell us, unable to engage and really see the world as it could be, you know. I hate what the condition robs him of."

Suzanne:

"You also hear a lot of people saying "Oh, I wouldn't change, you know, my child's disability". I would. I'd take it away in a heartbeat. I'd give my limbs to take it away, because I find it very strange that people wouldn't want their child to be able to talk, or play, or work, or love, or get married, or have a family, or even use the toilet. You know these are... why would you not want that for your child? I don't understand people that say "Oh you know, I love him just the way he is, I wouldn't change..." - of course i love him the way he is, of course i do, but do i wish it was different and he could have a fuller life? Of course i do.

"Zac's life is what his life is, but it not only defines him, it does define his sisters as well and that's not fair, you have to try and protect them from it, you know. But yeah, they were massively affected by it and that is really difficult.

"You're also doing it on no sleep, because the other thing he doesn't do is sleep. So all night he's either laughing hysterically, or bouncing up and down, or trashing his bedroom, or crying, being distressed and that means the girls don't sleep and we don't sleep. So, you know, after nine years of about two hours sleep a night your tolerance is down and your ability to cope  is down and you know, there's a reason why sleep deprivation is a torture technique... You cannot function and we just reached the point where we could just see it wasn't sustainable. So, you then reach the realization that you're not the best person to look after your own child, which is heartbreaking, because you feel like a complete failure. The one thing you can do is look after that child and keep him safe, and we couldn't do that. So at that point I conceded that we'd have to look at a residential school and there was only one that we would consider, which was Prior's Court.

"We went to look around and I cried all of the way around. I was crying for lots of different reasons - I was crying with recognition that there were children like Zac there, I was crying with relief that there was somewhere where he would fit in,  I could see that he would fit in perfectly there. I was crying with heartbreak that that was the right place for him and not with us and that we couldn't provide him with what he he needed, that somebody else could do that better than us, that was very difficult. And I was also crying because I could see it was the right place and I knew we had a hell of a battle on our hands to then try and get him in."

Local authorities are responsible for choosing the provision they feel a child needs, such as a placement at Prior's Court Foundation. When making a decision, a number of factors are considered, including the financial aspect.

The Robinsons eventually secured a place for Zac to attend Prior's Court after months of meetings, phone calls and emails with their Local Authority, as well as seeking legal backing.

Matt:

"The thing that gets forgotten in the whole process, that I found myself having to remind myself of and everybody, was that at the end of the day, we've had to make a decision that we can't meet Zac's needs. And that the only way that Zac is going to have his needs met is to be away from us for a lot of the time at a residential school. With experts and practitioners that are world-class - but we don't know them. Total strangers to begin with, and I still don't know many of them, we're at the beginning of this journey... We had to make a decision that, for Zac to have a life that he deserves, to have a foundation when he's a young boy, going into being, you know, a teenager and then a young man, we can't provide that for him, so it's a very tough decision to make in the first place. So i can tell you one thing for certain is when we heard that we've got Zac into Prior's and then recently, when we heard that Zac got 44 termly, there's no opening of champagne or "woohoo, great". It's really weird man. It's just a moment of... you feel quite flat, quite deflated, because actually it's sad that that's the decision that you have to make. And then only actually as time goes on does it start to make sense, you know, and the few times i've seen Zac, you know when I see Zac at Prior's, and I see the love and care that people have for him, and you know, how he's made some real improvements, then you go "Ah, this is what it was about, this is what it was all about".

"They give us an update every Tuesday and Thursday and it's just brilliant, just hearing about what he's been doing, you know, like you know the walks he's been going for and obviously, you know, going swimming once every couple of weeks, and music therapy, and you know, he's got a really great physio there who is working, who is really working tirelessly to help him with his foot."

Suzanne:

"I would just love him to be able to communicate his needs and his emotions. I would love that. I would love him to give me a cuddle and say "I love you mummy". That's kind of the height of what i would want - for him, for me. I would like him to be as independent as possible. I just want him to be happy. That's all you ever really want for your kids.

"I'd love him to have friends and that that's one of the wonderful things that's happened at Prior's Court - he has a friend for the first time. He's ten and he's made a friend. And they sit, they obviously don't talk, but they sit next to each other and watch DVDs, and they're just together, and they're interested in each other which is amazing. You know, he's never shown that amount of interest in his sisters."

Matt:

"We have an evening with the girls and you know, the girls are laughing and playing charades , and we're having a, you know, a glass of wine and we sat out on the decking,  it's a beautiful night, and the girls are just being amazing. And always, there's always this part that is just like "yes, but you know, Zach isn't with us" and it's always gonna be that way that nothing will ever be quite right because he's not here. And even at the happiest moment, there's this ache because, you know, he's not with us. And christ, I would do anything to have him with us, you know, but I then have to go "this is not about me or us, this is about what is he doing right now. Right now, he's out on the nature trail, he's out on the sensory trail, he's having a swim, you know, he's having one-to-one, he's playing drums or guitar with Tomson, he's, you know, he's doing all of this and it becomes about.. just any moment where it threatens to be a little overwhelming with the sadness, it's just like, remember what this was about. And it's always been about Zac."

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