Not much blogging going on in my life right now because I simply have no spare time.
That was not the plan!
But, as a parent to a child with special needs, life never goes according to plan! Even when that child is now an adult child. And even when you have autism in your life, which means you live and breathe every inch of your life through plans!
By the time your Neuro typical child is 19 you expect them to be independent. Some will have been in uni for a year and are entering their 2nd year having just moved in with a group of friends to their first shared house. Others will have decided not to go to uni and are instead in their 2nd year of a job or apprenticeship in the big wide world. Some may have gone in the forces and others will have taken a year out to travel the world. An exciting age for any 19 year old. Unless of course you have additional needs and these fabulous opportunities are simply not available to you.
Welcome to my world!
I came to terms with the reality that Aiden is unlikely to leave home along time ago, this is not my issue.
My issue is the lack of provision and opportunity that is available people in Aiden’s situation.
Just to fill you in, and for those who don’t know. Young people with additional needs who have an Education, Health and Care Plans (EHCP’s), are now able to stay in Education until the age of 25. Fantastic, an extra 7 years to learn a worthy skill which will increase their chances of succeeding in a meaningful job within society.
Equally, this enables additional time for them to learn independence skills for a smoother transition into adulthood.
Well, I’m sure that was the idea when they introduced the latest code of practice.
But sadly, as I have come to learn, that this so called fantastic system is not fantastic at all.
Aiden loves sport and dreams of having a career in sport some day. Any neuro typical child who wants to pursue a career in sport, goes to college and undertakes a sports course. Level 3 if you were successful in your GCSE’s or Level 2 if you weren’t quite so strong academically. A sports course typically involves learning the theory of sport along with taking part in practical training. It also incorporates a competitive element. Ie playing matches against other colleges in your chosen sport.
However, for someone like Aiden who is unable to achieve to a GCSE level does not have this opportunity.
Instead, they get the choice of one course, which in our county is called the Foundation Course! So, not actually a choice at all, as it’s impossible to choose, if there is only one option!
Aiden completed this course for 3 years, and I’ve still yet to discover what he learned during his time there.
After 3 years of searching for what comes after college, we finally thought we’d found the perfect course. A coachmakers course. An accredited qualification in sports coaching. Perfect! The course was completely practical, with assessments done by gathering evidence through discussion, observation and questioning. And by completing this course Aiden would have gained an actual qualification, and one that is recognised in the sports industry. Brilliant!
All sounded to good to be true. And it was! Aiden started the course and absolutely loved day one. But as day two approached, I received a phone call telling me that the college has decided to pull the course! No explanation, no warning, that was it, the course was no more!
Great, now what?
Stepping aside from Aiden to before this happened. I finally thought I had got to a time in our lives where I could think about my own career. Knowing Aiden was sorted I found myself the perfect job. Part time, during school hours, but a REAL paid job!
I have spent 19 years raising my children I have been their mum, their carer, their nurse, their therapist, their voice, their advocate, along with many other roles which being a mum and having a disabled child involves. Let me just pause there and say: I have absolutely loved and enjoyed every single minute. Of course my role will never end, but I finally felt like there was now time in my life to do something for me!
Back to the issue – Provision!
So what else is there for Aiden? Well, I know what’s on offer! There’s gardening, gardening or gardening! Ok, so I may sound a little cynical but that’s not far from the truth.
Why is that the choice? Why does society think that all young people with learning disabilities want to do gardening? Don’t get me wrong I’m sure that’s exactly what some young people would choose. But not all and most definitely not Aiden.
Obviously, life goes on and as always the parents are there to pick up the pieces.
But how are parents meant to work when they spend there life living on the edge of what’s next?
A child or an adult child with additional needs can need 24 hours support or supervision to function in the world. That doesn’t just happen that takes detailed planning, time and a dedicated team of people. And crucially it involves money.
To pay a person on minimum wage for this support would cost £76,440 a year!
Now let me tell you how much you will receive if you have to give up your job because all of a sudden your disabled child is excluded from school, or they are too poorly to attend school or the college have just decide to cancel the course!
For 35 hours of caring a week, so no evenings, nights or weekends, you will receive £3,439.80 in carers allowance! That equates to £1.89 per hour! Happy living on that guys!
But it’s ok because you are allowed to work as-well – that’s providing you can find someone, for free, to your after your disabled child because trust me you won’t have any money to pay them! And oh, there’s no provision!
But you can, when you’ve done your 35 hours caring, go to work, and earn a whopping 76p per hour for any remaining hours of your life! That’s £123 per week.
Cheery ah! But sadly, this is the reality of our society.
Of course, I am Aiden’s mum and I will look after him regardless, I don’t want payment for looking after my own child but I wouldn’t be in this situation if there was appropriate provision for him in the first place.
Without the provision the system is broken, the vital link in the plan causes a downward spiral of dysfunction and subsequently has massive implications on not only that child but the whole family.
Aiden is more than capable of working within our community and is already a valued member of society but he can’t do it alone and he needs a little longer than most to develop his skills.
But without the opportunity of appropriate, relevant and more importantly, exciting provision we are preventing so many young people from reaching their full potential and causing unnecessary hardship and stress on thousands of families.
The difficulty of trying to weave life in and out amongst children (both with and without special needs) is indeed a tremendous task. Hopefully there is some organization that can guide him (with your help) to a career he can thrive in. All we can do is keep trying…and asking…and investigating…bless him, I hope something does materialize soon…gardening is pleasant but not something that can give someone who was born to do something else enough satisfaction in their lives…
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We’ll find something. Life is sent to try us! We just have to find another way.
Thanks for sharing this, from the heart and soul..I keep hearing similar stories. It’s so devaluing of people who have so much good to offer, who want to contribute in ways that are meaningful to them and genuinely valued by an understanding community. It is deeply painful for loved ones to see these precious people fobbed off or hung out to dry.
You express how so many feel.x
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