Building support networks to cope with autism
Emma and her son, Oliver, arrived at Unique Ways struggling to cope with his autism. Through working with us, they’ve been able to develop a range of strategies for coping and progressing. Oliver is now gaining confidence all the time, and Emma now volunteers with us, giving training sessions herself!
I arrived at Unique Ways having realised my son probably had autism. I had school reporting bad behaviour on a daily basis. I had been ostracised by the other parents at school, who had labelled my son naughty. Party invites for my child stopped arriving. I had been plunged into a world of dealing with teachers, head teachers and meetings at school – things I wasn’t equipped to deal with. Some friends disappeared out of our life because they didn’t understand Oliver’s behaviour, and some friendships naturally dissipated as we grew apart living different lives – we just weren’t on the same page anymore. I had been made redundant at the same time and was desperately searching for another job.
By the time I got to Unique Ways, I was at rock bottom. My confidence was on the floor, I was isolated from the world, doubting my abilities as a parent, not knowing anything about autism or how to help my son, and thrown into a new unknown world. One staff member later fed back to me that I wouldn’t even look anyone in the eye when I first arrived at Unique Ways. The only place I took Oliver to, other than school, was into the woods, as we didn’t come across many other people. The rest of the time we stayed at home where people weren’t able to shout at us. We were so alone.
I came to the first coffee morning with my mum in tow. The staff were very welcoming, and a brew was quickly put in our hands. We were very quiet at first, listening to others, but soon came to realise that we weren’t alone. There were lots of other parents going through the same things as us, having the same problems.
We started pencilling in the first Tuesday of every month on our calendar – it became our lifeline. We found that over the month we would get knocked down with problems, we would then go to coffee morning and come out on a high, and slowly sink back down over the month again. I started arriving with a list of questions and situations that had happened and then leaving with a list of phone numbers to ring and some strategies to try. I began learning how to deal with Oliver, how to make things better.
Over time, things improved immensely, issues slowly resolved, and I started coming to coffee morning with less questions. I made new friends, people living in the same world as me, people who understood, and I started enjoying myself. Coffee morning has really built up now and we have a great bunch of regulars coming. It is a hub of laughter and chatter. I am a changed person, I have new found confidence, I never hesitate to take Oliver out and I find the tables have turned and I am now helping others, giving advice and offering strategies! My mum and I still both attend coffee morning every month; it’s more of a social thing for us now, we are not turning up in desperation anymore, but I get great satisfaction knowing that I can now give back and help others.
I applied to the advocacy service at Unique Ways for someone to help me with the meetings at school. The last place I ever wanted to be was sat in a room with a bunch of teachers and a Senco who had spent no time with my child. I felt so inferior sat there, and dreaded the regular meetings. School walked all over us, didn’t listen to anything we said, controlled the IEP meetings and arranged the IEP targets with little input from us.
Lowri from Unique Ways started working with us. She helped us to prepare for the meetings and accompanied us at them as well. She helped us understand Oliver’s legal rights, she always told us what our different options were, backed us with any decisions we made, and made sure our voices were heard. She gave me the confidence to challenge decisions made about my child, to put in a complaint to school when I was really unhappy with how things were going, to challenge short breaks when they repeatedly said no to my application. She helped me fill in application forms when they overwhelmed me.
Over time I started to do things for myself. First I started preparing for the meetings myself, sending Lowri a programme so she knew what I wanted to talk about. She still accompanied us for a while longer, as we felt they listened to us more when she was there. After a while, I started to deal with it all myself – I attend meetings on my own now and I’m not the quiet little mouse sat at the table anymore. I am much more assertive.
I am involved in setting the IEP targets, and can mould them so they fit Oliver’s profile. What’s more, school listen now! Another complaint letter told them I’m not a push over, and won’t accept poor care for my son. We currently have a really good relationship with school, with excellent communication, and meetings are fun and easy-going now.
I signed up for a course called the Insider’s Guide that Unique Ways were running. It’s a course designed to help parents of children with additional needs become more resilient, and is delivered by both a professional and a parent, so it’s not just someone telling you what to do (the professional); it’s someone who’s actually been there (the parent). This course helped me understand my son’s meltdowns, when to intervene, when to just ride the storm. It helped build my confidence and helped me to cope with the day to day problems you get with a child with additional needs. I was among other parents on the course who were the same as me, struggling to get through. I enjoyed this course so much that I actually trained to deliver it as the parent!
I also went on the EHC plan course, which taught me how to do person centred planning. This information helped me become more involved with the IEP meetings and targets, and showed me how to tailor them more to Oliver. I also learned how to do a one-page profile, an information sheet you can give out to people so that they know your child’s needs. This has been invaluable and has been given out to staff at school and at the many clubs my son now successfully attends.
Parties and Events
Unique Ways have put on a few events for our children too! We have attended a couple of Christmas parties, a Frozen one the first year and a Minion one the second year. Our children thoroughly enjoyed the parties, and for us it’s great for Oliver to socialise with other children with additional needs and realise that he’s not the only one with autism. We also attended an event at Jumping Clay where Oliver made a Minion out of air drying clay to take home. Oliver really enjoyed these events, and it was really nice to see other parents’ children too, as we often talk about them at coffee morning but don’t get to see them because they are at school in the daytime.
I finally got school to see that Oliver does need more support and that he does require an EHC plan. The parents get to fill in part of the plan, and I knew that Unique Ways had an Independent Supporter to help complete this section. Having never seen one of these reports, I didn’t know what it entailed so I spoke to a supporter and got both myself and Oliver booked in. Helen has been marvellous – she knows the right questions to ask and the right information to get on the form, and I’m really pleased with what we have submitted. School are really on board now, and with support from other specialist agencies everyone thinks we have a good chance of getting the EHC plan.
I’m a completely different person these days, compared to the person who first walked through the doors at Unique Ways. I am more confident; I don’t hesitate to go out. I am more assertive, I am able to challenge decisions about my child and I know a fair bit about autism these days too! I have gone from having nothing to do to my calendar being full and struggling to fit everything in! I don’t know where I would have been without Unique Ways, as there isn’t anywhere else offering support to parents of children with additional needs.
This is a constant hub of activity and support. You walk through the door and are greeted by a hug from Amanda and you have a brew in your hand within minutes of entering the building. The whole team are friendly and non-judgmental – they are just the nicest bunch of people you could meet, and they go out of their way to help you when you walk through the door!
I can’t believe how much Oliver has changed and progressed. This child who was lashing out at people daily, who had a terrible reputation, has now got friends at school. This child I couldn’t take out anywhere goes to Cubs (with a support worker), has regular swimming lessons, goes to an art club (independently!) and to a Saturday Splat play session where he has made a wonderful friend. He is gaining in confidence all the time and has become much more aware of his autism. He’s got a great personality and he makes me laugh every day!
I used to worry about how Oliver would develop as he got older, and what he would be able to do in the future. Questions like will he learn to ride his bike? He did! Will he stop hitting people? He has! Now I have seen the progress he has made, I don’t worry about it anymore. I know he will get there, but as we have found, he will do it at his own pace.