We talked with a parent of a learner identified with autism to find out how things have been for her, the good and the bad, what she would change and what tips she would pass on to other parents.
How would you describe your child?
A quirky, caring, bright, misunderstood, complex Aspie with PDA traits.
How would you describe your SEND journey so far?
A rollercoaster of obstacles.
What do you think has helped your child the most in their education and generally?
The kindness, compassion and commitment of the teachers and therapists at his independent special school.
What has helped you the most?
The other SEN parents I have met along the journey. Many helped me with advice and signposting before we managed to get an EHCP, and many others have become trusted, non-judgemental, valued friends since my son started at his special school.
What has been hardest for you?
The judgement of people in our local community has been the worst. We struggled to get a diagnosis and then had to fight to get an EHCP, and it took so long that my son’s coping skills and behaviour fell apart in the process. Years later, we are still seen as outcasts in our local area. This is awful, but the tens of thousands of pounds we have had to borrow to pay legal fees to get our son the support he needs is a close contender to the problems remaining from his mainstream school.
Who or what has inspired you?
I’m inspired by all the SEN parents I’ve met. We are each struggling 24/7 and most people have no idea what is going on behind our brave faces.
What would you say to other families whose children have been identified with autism?
Your child needs understanding and compassion above all. Build a community of people who understand this. Don’t waste time on services that sideline, and people who don’t understand. Your child’s happiness and potential will improve dramatically once they are with the right people and in the right setting. In turn, your family life will also improve.
Parents of children with additional needs work very hard. How do you take care of yourself?
I could do a lot more to take care of myself! I surround my home with houseplants and we have a calming aquarium and chilled out cat. I also have continued to work part time in a job I enjoy which gives me a breather outside of the home.
Is there anything you would change about the education system so that it could better support learners like your child?
I would change so many things! Most importantly, I would make every school genuinely inclusive. I would also measure success by coursework rather than end of year exams.
What are your hopes for the future?
I hope my son will achieve academic qualifications and be able to go on to University and a job he loves, which will then enable him to live independently and have a family. Mostly though, I hope he is happy and fulfilled in whatever he does.