It’s over a year ago since I started my blog. I banged out my first blog post to vent my spleen after an appointment with my GP regarding Isobel.
I had asked for a referral to a neurologist as we suspected she had some memory issues that were affecting her progress in school. The doctor told me that maybe I should accept that Isobel would never be able to do some things.
We eventually got our referral to the neurologist & we were very much listened to at this appointment which resulted in a referral to a neuro psychologist for more testing.
Isobel was tested to the hilt during 3 appointments spanning a couple of months.
We were invited to an appointment to receive the results of the tests on GCSE results day 2016. This was the first time in my teaching career that I wasn’t in a school for results day. It felt quite strange but I knew that we would be receiving our own set of results today. Results that would inform Isobel’s future.
The psychologist had assigned an hour and a half to feedback the results to us. She had asked that Isobel wasn’t present at the appointment.
What we discovered was fascinating; some things we were surprised at, some things we weren’t.
We were incredibly impressed by the absolute professionalism of the psychologist. She was incredibly clever, very experienced & possessed excellent communication skills. She explained complex tests simply & drew us lots of charts & graphs to explain her findings.
Isobel was born at 24 weeks. Many people thought she had no chance of survival so what would the future hold for Isobel?
After several surgeries (bowel x 2, heart, eyes) over 24 blood transfusions & 5 months in the neonatal unit, Isobel came home to a loving family & a future we couldn’t be sure of until she did or didn’t reach certain developmental milestones.
Nine years later we sat across the table from a highly regarded health professional to be told that our daughter was ‘exceptional’. The psychologist had shared Isobel’s test results with other colleagues who were all amazed with the results. She was within the normal range for most tests which is pretty amazing for a 24 weeker (apparently).
To be told that your child is ‘exceptional’ was one of the proudest moments in my life. I am so proud of her but also so proud of us and our family who have dedicated so much to ensure she gets the best experiences possible.
I was so right to push for a referral because we now have access to information that will help us even more to help Isobel, especially at school. She has some memory issues and she displays several autistic traits (which we have suspected for a while), she will always struggle with maths but she also has many strengths.
We are waiting for our autism assessment but in the meantime we have introduced new things to help and support her.
The psychologist we felt was a bit surprised by our reaction to her diagnosis until we explained that on many occasions we had been told Isobel might not make it through the next hour or day. When you have faced the imminent death of your child several times, a potential diagnosis of autism is just another piece of information that we can use to make her life the best it can be.
A big thank you to Sheffield Children’s Hospital Neurology Team.