Just one year that’s all it was to support my daughter as she made the transition from her special school into adult life and the world of work. I put on hold my career and future aspirations and ploughed into a world of learning disabilities, college and training courses. Of course I have been immersed, since Beth was born, in an unknown world of ‘what ifs and can’t dos’ so what could this year possibly throw at me, that I haven’t already experienced.
Well the first thing I learnt, yet again, was never to underestimate Beth and her ability to adapt to new experiences and surroundings. I recall the first morning she attended her new college course. I sat in the car park of the college and I watched as she excitedly waved goodbye, disappearing into the throng of students, who in my eyes were too old and worldly for her. I waited nervously for her to come flying back out. I counted, I prayed, I wrung my hands….nothing she was away.
It only then occurred to me, that for the first time in years here I was driving along listening to my music in my car, with an entire day stretching ahead of me and I had it all to myself (well until 3pm). I felt guilty, I felt unworthy of this time just for me. It wasn’t right I should be doing something constructive… truth? I was in heaven.
Our hope as a family was that Beth would make friends and begin to become more independent. For a while this seemed to be happening, Beth was telling us all the right things and I suppose what we all wanted to hear. About six months in to her college year Beth’s mood began to change, college had thrown up lots of challenges that for the rest of us is just daily life but unfortunately for Beth was quite difficult to process. These included tutors being off ill, substitute cover not turning up, multiple movement between classes and a peer group being much older than Beth. Combine all these factors into a melting pot with someone who has a profound learning disability and has been protected all her life….. the outcome is not a positive one.
Support was sought from college tutors and other personnel however because we did not buy into the ‘one size fits all’ mentality we were not viewed favourably for questioning, challenging or asking what alternatives existed for our daughter. Beth’s mood plummeted, she was always apologising, asking if she was a good girl, was it her fault that she hadn’t made friends, her confidence also spiralled downwards. Old behaviours returned, regressing to childlike phrases and speech and anxiety levels were at an all-time high for everyone.
I was in a pressure cooker, I was a rabbit caught in the headlights. What do I do? Who do I talk to? Who will not judge? Who will listen? Less than a year ago I had a challenging and fulfilling job that I loved, Beth was safe, happy and in a placement she loved. What had I done? I had taken the year to help her grow, now we were both sitting at home with what appeared to be no future and nowhere to turn. The final straw came when I was told in the car park of the college that my daughter was merely seeking attention and the problems were probably stemming from home, oh and to round it off, my daughter was apparently ‘determined to be sad’. Well the truth was, regardless of input from the so-called experts and professionals, Beth didn’t fit what was on offer to her. It wasn’t the right size, shape or colour but it was the only size, shape and colour available. She was clever enough to understand this and try as she might she just didn’t fit and boy did she try, she hated the reality of this.
When you do not conform to societal norms then your options sadly are limited. The stark truth is that when you live in the world of special needs you are often expected to take what is given to you and be ever so thankful and grateful regardless if it fits or not. Beth is in the fortunate position that she has family who will fiercely fight for her rights and be her voice when she needs it but what about those individuals who do not have that resource, do they have to just accept this one size fits all concept? And if so why should they? Parents, teachers, policy makers, government bodies all have a responsibility to widen the opportunities to those individuals like my daughter. The very place that should have offered Beth education and learning for the future let her down. They appear to have a template or model for what works for the masses and if there is a breakdown it must be to do with the individual but never their stringent model.
Now fast forward a year later, Beth is now with a provider that meets her needs, who design courses for the individual, they are dynamic and forward thinking best of all Beth fits’ without even having to try! Their mission is to EQUIP* people who have a learning disability or Autism with the skills to improve their confidence, independence and employability. They have bespoke academies that offer training in a range of subjects to suit individuals. Employment officers are assigned to build relationships with the trainee and offer placements that may long term lead to paid employment. The organisation and its board listen to the parents they value their opinions and ideas. Beth is thriving in this environment, her most recent review stated that she is a happy sociable young lady, willing to please and try any task expected of her she is not and never will be …. ‘determined to be sad.’
I have news for any parent who finds themselves in a similar situation one size does not fit all and be brave to challenge those who try to tell you otherwise. It is ok to speak up, to not accept what has always been the norm. Yes it takes guts to question and petition when it seems that everyone around you is judging you, or making you feel as if you have the biggest chip on your shoulder, but what is the alternative? Do we then just accept mediocrity? Absolutely not! Beth is not average neither are the individuals she represents. So I urge you, as parents, to keep being the voice for your son or daughter and for all those other very special individuals they embody. Be their advocate and take heart that you are most definitely not on your own.
It is suffice to say that my year has now lengthened to early retirement. How could I leave the most important job in the world after the most enjoyable and challenging year of my life?
So here’s to my daughter and to infinity and beyond together.
*Empowerment – Orchardville, Families, Employers and Funders work together to enable all users to achieve goals and aspirations.
Quality – Through creativity and innovation we are committed to providing excellent services to meet the changing needs of all users.
USER – We place the Service User at the centre of everything we do.
Integrity – We place high value on the reliable and honest way we conduct our business and will ensure everyone is treated equally and respectfully.
Passion – At the heart of our team we are passionate to energise, engage and inspire everyone.
Mum to a Kool Kid 