My 14-year-old daughter’s recently been diagnosed with autism, which answered a lot of questions for us about her behaviour. She was self-harming for a while, and we thought it was due to grief because my dad had recently died. Then, when her younger sibling was born, I was really ill – I nearly died as a result of complications – so she had a lot going on.
But when we took her to the bereavement service something didn’t fit, and they suggested we go and see the child and adolescent mental health services (CAMHS) instead. Pretty much as soon as we went in they said “She’s not grieving. She’s autistic”. Even so, we then had to wait for a referral to the ASD clinic.
They said to tell the school straight away that she was autistic so we’d get support before the formal diagnosis was given but, to be honest, they may as well have said “here’s the deep end; learn to swim”.
They said to tell the school straight away that she was autistic… they may as well have said “here’s the deep end; learn to swim”.
Let’s just say we’re still struggling and we’re all still on the learning path together. Trying to cope with school and the usual things people her age go through is difficult and we’ve also had challenges with bullying as well, so when she comes back home she’ll sometimes explode.
We’re always in school trying to get to the bottom of something – it’s near enough every week. For example, we were called in because she was playing truant. We sat down in a meeting with her and the school and the first thing she said was that nobody listens to good kids. She actually said “now you’ll listen”.
Since then it’s been getting better, and that’s mainly due to the pastoral help. We’ve had some positive feedback, and I was touched by one teacher who told me that I was the only parent who supports them to support us, and suggested I should get a job working in a school.
Family Action’s Special Educational Needs and Disabilities Information Advice and Support Service gives us lots of information
Other teachers have been less good, and we’ve had a lot of challenges relating to how they manage my daughter and their communication… I have people cancel meetings on me all the time.
Family Action aren’t like that, as their Special Educational Needs and Disabilities Information Advice and Support Service (SENDIASS) gives us lots of information, and one of the ladies there actually sits down with me and takes me through difficult processes like applying for an Education, Health and Care plan.
Having a small child and coping with my elder daughter’s challenges has meant that I’ve also struggled with my mental health, and at one point I even had a breakdown due to the stresses of coping with my mental health and looking after my youngest child – I wish I could work, for example, but I struggle to go out and if I do it’s a big thing for me due to anxiety.
Having a small child and coping with my elder daughter’s challenges has meant that I’ve also struggled with my mental health
I think if you’ve got a child with a disability, and you struggle with your mental health it’s the same – it’s often like you’ve been passed to one side by the services and people who are meant to help you.
I’m so lucky to have my husband as he often ends up doing three jobs in one. For me personally I’m just proud that I’ve managed to walk a dark path, while listening to my kids and getting through everything together. It’s a bit of a challenge to cope, but we never stop trying our best, and we support each other.
Families can be the most valuable support network we can have, but they needn’t be the only one. If there’s anything regarding your family life that you think could benefit from a listening ear then why not contact our FamilyLine service for information, support and guidance? Our SENDIASS services are also available for free and impartial information, advice and support.
