My eldest daughter has autism, as does my youngest but she refuses to pursue a diagnosis. They also have another genetic condition.
My eldest was diagnosed aged 4, at which point I gave up a very successful nursing career, to be at home with her. We couldn’t really afford for me to do that but she needed me at home.
We fought tooth and nail to have her statemented. It took us two years. However, we always made it clear that a statement was necessary in order to develop independence in the future. Her primary TA was fantastic. She worked really well with us. Autism was not an excuse, as far as we were concerned. There were times things had to be done differently but on the whole, she knew she was subject up the same rules as everyone else. She accepted that because she didn’t want to be treated differently.
By the time she got to Year 9 (year 8 in England), she didn’t want a TA in the classroom with her. She needed a lot of support still outside of school but she wanted to be like others. She rarely misbehaved in school but if she did, she was subject to the same discipline as everyone else. She was terribly rude to her TA on one occasion, out of frustration. However, we made her apologise in person to her. Yes, she has autism but no, that was not an excuse for her to act out and treat someone else badly.
Many people around us thought we gave her too much support with school work etc. Even at Uni, I would support her with helping her to do research and referencing. When I suffered a serious brain injury, it was good rehab for me.
Next week, she starts a permanent job as a teacher herself - one of only a few on her PGCE course to have secured a permanent post having only graduated in June.
We received the lower rates of DLA when she was a child but she lost it as soon as she was 18. She didn’t want to appeal. Instead, she got a part-time job and worked her way through Uni. Because of her other genetic condition, her mobility is limited. She learned to drive instead of using the train but could only drive an automatic car. She bought her own car - an automatic - and paid it off with the money from her part time job and saved the money from her student loan. She had saved enough that during her PGCE year, she was able to leave her job and focus on it.
Her first placement was a really, really challenging school in a area with a lot of social issues - organised crime etc left behind in the wake of the troubles (We are in Northern Ireland). However, she coped really well with it and rose to the challenge.
We are so proud of her. We’re just an ordinary family, determined that autism wouldn’t hold our daughter back. Life was difficult but we armed ourselves with all the information we could. We were a pain to the school sometimes but we chose our battles carefully and tried to maintain good relationships. You need a lot of knowledge, a lot of patience, a lot of courage and a lot of humility.
Parents like Hollie drive me mad. They don’t take responsibility. They expect other people to “fix” their kid. However, parents have responsibilities. They should be committed to ensuring their kids’ needs are met. It’s not an easy role and at times, we felt like pulling our hair out.
When I see what my daughter has achieved though, I would do it over again. Nothing mattered outside of our kids. We made sacrifices and we went without so they could have every opportunity to achieve what they wanted. People thought we did too much. I think we did what we had to do.