When we were told Aiden had autism our whole life flashed before us. Will he ever be independent? Will he ever work? Will he ever move out? And then without having time to think, those thoughts were pushed aside and our upturned life was consumed by simply living in the here and now.
My default phrase became: Let’s just reach one milestone at a time. Let’s just concentrate on getting him into the right school. Let’s just concentrate on being able to leave the house without a major meltdown. Let’s just concentrate on sharing our time equally with his siblings. Sound familiar?
Life with all its trials and tribulations is all consuming and before you know it, you have an 18 year old who is no longer a child. Now what?
Having a child with additional needs means your life involves so many other people and consequently intrusions of your privacy. Decisions you make as a parent are not solely yours, they are discussed and judged by complete strangers who see or hear snippets of your life and are then duty bound to give a ‘professional opinion’, which, whether you like it or not, is acted upon. These decisions could conflict or completely override your parental choice. However, you become reliant on ‘the professionals’ decisions to gain access to services or support and will often compromise your judgments in order to, just get around the system.
The word ‘transition’ was flung around a lot throughout Aiden’s teenage years but without any real explanation.
Leaving school at 15 nearly 16 to move to college was one transition I understood, and one that Aiden found incredibly difficult. He absolutely loved his school and when he left, it was the first time I had ever seen him cry through genuine sadness.
This was a physical transition for Aiden and one that significantly affected him, but as a parent, it was the transitions in services that I was not prepared for and wish I had understood more about. Let me explain…
To coincide with this transition, the DLA benefit you receive, for your child, as a parent changes to PIP and this benefit becomes your child’s responsibility.
Would any 15 year old be capable of understanding our benefits system? Would they know how to budget for themselves? Or understand the full impact of their actions and decisions? Of course not, so why they expect a child with as additional needs to be able to is beyond me.
Surely, if this benefits change happened at 18, some young recipients without learning disabilities, might be better prepared to take on this responsibility independently.
Anyway, in order to allow you, as their parent, to take on this responsibility, your child has to agree for you to be their appointee! (Like Aiden has any idea what that even means!)
Once that’s in place and you’ve filled out the 50 million page PIP document, your child then has to be interviewed by a complete stranger. They are grilled about how their disability affects them in life. In Aiden’s case, his disability is one that he’s completely oblivious too! Aiden does not see him self as different or disabled at all! He doesn’t have the ability to understand his disability. Equally, we have spent his whole life celebrating what he can do not what he can’t.
I’m aware how other 16 year olds present (I have been a sixteen year old, and I also have lots of friends with youngsters the same age) but Aiden had been surrounded by 16 year olds just like him, so he knows no different, and for him, that’s exactly how it should be.
However, all those times when people have said you shouldn’t compare your child against others, when it comes to getting support, you should. You need to be mindful of the typical milestones their peers are reaching so you know what support they will need. They have the right to be equal.
Quite often our special needs bubble becomes the norm and we easily forget the outside world.
Thankfully for this particular transition we had a great social worker who, on this occasion, agreed with my judgment, and was able to give enough information to the PIP team with an interview. But I know many who have not had this support and perhaps next time we might not be as fortunate. Because remember, in three years time you have to do it all again, just in case their disability has suddenly vanished!
Just when you get settled into college life that ‘transition’ word comes back around to bite you on the bum!
This time, Aiden had to move from children’s services to adult services. Again, Aiden was completely oblivious to this transition, but we weren’t! The work involved to ensure he received the right amount of support created a great deal of stress and uncertainty for us.
It’s a full time job caring for someone with autism, no matter how functional they may seem. It’s the work that goes on behind the scenes that enables a young person to function and become established within society. The most able people with Autism or Aspergers will have a dedicated, caring person behind them, refuelling them, organising them or supporting them emotionally.
This transition from child to adult services is massive! Getting it right is imperative to ensuring your child receives the support they need to help them in the real world throughout adulthood!
Those questions that flashed before me when Aiden was diagnosed are still there, although now he’s ‘technically’ an adult they’ve become the questions we are faced with answering today.
Will he ever be independent? Will he ever work? Will he ever move out?
I’ve come to realise that as a parent of a child with additional needs, it’s only me that can answer those questions. That’s because, actually it’s up to me to make the answers to all of them have successful outcomes.
Parents are the ones who make it happen. This is probably true for all children, even those without a disability, but it’s certainly the case when it comes to those with additional needs, like Aiden, because he can’t and never will be able to answer them.
Will he be independent? Well, that depends my meaning of independence. I believe Aiden is already very independent and this is something we promote and develop every single day. Will he be independent like you or I? No, I don’t believe he will. This isn’t me being pessimistic, this is the reality. His disability will always mean he’ll need support with many aspects of his life and actually, that’s ok.
Will he work? Well again, it depends what you see as work? For me, that’s having a job, be it paid or unpaid, that gives his life purpose and meaning. Yes, Aiden most definitely will work. As his parents, we’ll have to work incredibly hard to ensure he gets that working experience but together we’ll help him find something that plays to his areas of interest and skills so he can succeed and feel valued.
Will he ever move out? Again, I’d like to say that’s up to him, but the reality is, at the moment, it’s up to us. Does Aiden want to move out? Well, he doesn’t really understand the concept. He knows what moving out means but does not understand what that entails. He may learn this as he gets older and if he decides that’s something he’d like to explore, of course we will make that happen too, but right now we believe he’s not ready.
Whether you have a 2 year old or a 12 year old, those transitional years will be here before you know it.
So here’s the reality. No professional explains to you the process of transition and they definitely don’t tell you what support is available for you or your child.
So my advice? Speak to as many other parents as possible who have been through the system to find out what’s available. Make sure you know what other typical children are doing at the same age and gauge your support package around it.
And remember, YOU are the most important person in your child’s life because it’s YOU that makes it happen.