This Wednesday we have a great feature from Caroline. She has three children, and has been a mum for the last 23 years, but has been caring for little people for a lot longer!
- Can you tell us a bit about yourself?
Hi, I am one of three children. I was born in 1960 – At the time you don’t think you are in an iconic decade! I went to Chichester to do my Teaching Degree. At that time I had no idea I was being equipped to raise my future children. I taught for 13.5 years before this privilege came to pass.
- One of your sons is diagnosed with ASD. Can you tell us what the process of getting his diagnosis was like? Did you know much about ASD before he was diagnosed?
As a parent, you are very aware if there is anything not quite right with your child’s development. James was a very active child, with little concentration. Although he started to talk, he didn’t start with the classic words; Dad and Mum etc, but stared at bright things. His first word was “star.” He went from eating everything until he turned 2 years old, then became very fussy and certain foods made him hyperactive.
He went to playgroups and nursery but he played how he wanted to. He found it difficult to do school type activities and wouldn’t draw or write anything until he was 5 years old. He loved energetic play. Once on a trampoline it was difficult to get him off. His fine motor skills were not so good. James didn’t sleep well he didn’t sleep through the night until he was 2 and a half. I asked for James to be seen by a professional on starting school.
From his medical exam, anomalies were present and he went to the hospital for tests. They thought him too young to be given the label ‘autistic’. He also saw the Nutritionist at the hospital as he ate so little.
His Special Needs Coordinator who came from London when J. was in Yr 3, verbally spoke of his behaviour being ASD. It was only when he refused to go to school in Yr 5 that the school paid more attention. James did not disrupt the class as his hyperactivity had become anxiety. He couldn’t cope any longer being in a school setting and was referred again to the Child Development Team by the school. Still nothing for another year. Even though we pushed, nothing happened until he was properly assessed before going to Secondary School.
His test results were classic scores. His language scores were very low. He got a Statement of Education. Very frustrating! Six years waiting, but we were so pleased with his diagnosis. He wouldn’t manage without extra support. He had some specialist language tuition as well to try and catch up. Bullying was ongoing in some form and James was only safe if he didn’t go on the playground.
From the age of 5 onwards I learnt everything I could about Autism. Watching programmes, You Tube videos, Autism charity pages etc. and being a teacher helped, as you learn a lot about child development.
- Do you have any advice for families going through the diagnostic process?
Don’t give up! Keep pushing. See your GP. We went along the educational route and it took longer. In many ways you are teaching teachers about Autism because it isn’t always on the Teacher Training Syllabus and unless they have someone they know with it, they don’t know what to do.This May have changed now.
- How are you helping your son transition from being a teenager to being an adult?
Liaising with the College. Each student is unique with their own needs. James has a Health and Education Plan with set things the College needs to put in place for him. Our role is making sure tutors know these. Exam support is vital as he has his exams in a room by himself or small group, with more time. James uses a computer or laptop. At home we make sure we give opportunities for him to express where he is having difficulty and how we can help with hygiene, eating properly, the importance of sleep, finishing college work on time and not handing it in late, the need for social input and relieving sensory issues. Etc. We also make sure we communicate any issues to the college immediately so J. Doesn’t become stressed.
- Have you had to face any stigmas since your son was diagnosed with ASD? What were they and how do you respond?
Yes, we have been seen as over protective. People who don’t understand Autism would see you as doing too much for your child.
The alternative is to watch your child vegetate as they don’t want to do anything that they are not comfy with.Fear of going to school, fear of going out, fear of going to a friends party, fear of crowds and being fearful of loud noises – James’s sensory difficulties only exasperated these situations. James’s carefree hyperactivity turned into anxiety from the age of 8 years. Before that he was seen as naughty and unable to access and participate in the more academic areas of school. Only certain members of staff could settle him if he was upset.
I am very sensitive to the comments made by people. Having the diagnosis changed that. I went from a back foot position to making those around us aware of his difficulties and making sure he got what he needed from his teachers and support staff. I have always explained his difficulties but with the diagnosis you speak with more conviction and authority.
- it can be challenging enough to care for someone with additional needs, but you’ve also spent time caring for your husband at the same time. What motivates you on a difficult day?
My faith motivates me on a challenging day! Love and forgiveness. Only God sees all you do when no one is around. He helps me daily to do what I need to do and gives me the wisdom to do it. This is true today too. This is not easy though, but perseverance and discipline of the mind is important.
Prayer is so important. Philipians 4 v5-7 continue to be with me daily.
5 Let your reasonableness be known to everyone. The Lord is at hand; 6 do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. 7 And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.Philippians 4:5-7 ESV
I just love being a mum. All aspects. When you do something you love for people you love you go the extra mile.
- You work with an amazing group called TLG. Can you tell us what they’re all about and why you decided to get involved?
TLG stands for Transforming Lives for Good. It is a Christian Charity. My children are grown up now but the joy of working with children is still just as strong. This is a way to help a child and have the joy of helping them.
As a coach I get to support one child, once a week for one year. The child may have a difficult home situation or a difficulty in school. We come alongside the child and support them through it.
- What are your favourite pastimes and hobbies?
My hobbies are jewellery making, crochet and various arts and crafts. I also love to sing and dance and do Pilates.
- If you could give your younger self some advice, what would it be?
Take one day at a time. Don’t be so hard on yourself. Enjoy each day and focus on the good. Put your relationships first.
- Is there anyone who inspires you that you’d like to nominate for our wonderful women feature?
I’d like to nominate my friend Diane. She is a wonderful mum to 6 children, she runs a children’s group for the church and has lots of students stay with her over the summer!