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“The fact that my daughter has ‘hidden’ special needs was in some ways harder to accept because on the outside she looked fine.”

Olufolake Flo Ayeyemi, is a married mum of two and her eldest daughter is autistic.

In this blog, she candidly explains the struggles she had about accepting and admitting her daughter’s diagnosis.

She also tells how she managed to find hope and help through setting up Moriah Family support group which is a group equipped to provide information and support for parents and carers of people from Black Asian Minority Ethnic (BAME) backgrounds or for whom English is not their first language.

“I was born in Nigeria and my family is from the Yoruba tribe. I came to England 13 years ago. If I am honest, I never really wanted to come to England. I’d been living a good life in Nigeria. I had just graduated, I was working in IT for the British Tobacco company where the money was good, and life was sweet!

“When I arrived in England, I was already pregnant with my first daughter and we lived in London with my parents. There had been no real issues with the pregnancy. As she was the first child, she was just lavished with lots of love and attention. No one really noticed that there was anything different about her. Granted, she used to cry a lot but we put it down to colic and her big appetite. My parents, who’d had four children, didn’t really notice anything unusual.

“When she was two years-old we moved out of my parent’s home to join my husband who had just started his Masters degree at the University of Portsmouth and she began nursery. After a few weeks, her key worker came to tell me she thought that she had some challenges and that she felt something wasn’t right. She recommended that we sought help. She was referred to the speech and language therapist and was provided with support.  However, because I was so in tune with my daughter, I still didn’t think much of what the key worker had said. However, as time went by, it dawned on me more and more that there could be some truth in it.  However, it wasn’t until she was eight years old that my husband and I eventually allowed her to be formally assessed.

“Before this time, I’d been fighting against getting her diagnosed. People would also discourage me from getting her a diagnosis because they’d tell me that she looked fine. I believed close family and friends when they said that having an official diagnosis would give her a label.  Deep down I knew that I was being selfish by not getting her assessed. I knew that I was making it all about me and not about her and that broke me. Eventually, I finally decided to put her needs first and to seek the best possible help. Through her assessments, she was finally diagnosed as having autism and some problems with cognition. During this time, she had also been discharged from having speech and language therapy sessions.

She continues: “You must understand that for me to finally admit to myself that something wasn’t right was hard. In my culture, disability is not something that is openly spoken about and I knew nothing about autism. I felt a lot of guilt and I even blamed myself. Had I not eaten the right food? Was it because I’d travelled on a plane whilst pregnant? I even wondered if I could change her diagnosis by praying it away. I had so much insecurity. The fact that my daughter has a ‘hidden’ special needs was in some ways harder to accept because on the outside she looked fine. I would find myself jumping in when someone addressed her because I didn’t want them to think she was rude when she didn’t answer. In my culture, it is seen as rude if a child does not respond to an adult when spoken to. I found all the social struggles very difficult.”

Flo explains how the group originated: “So, you could say that I initially started Moriah Family Support Group out of my own needs. When I started this journey, I felt like I was the only one who had a child with special needs. The group was born out of my need to be able to connect with other parents, of similar backgrounds, who could to relate to how I felt. There’s nothing quite like being with other parents who get you straight away. 

“The group has about 12 active members now. However, Covid -19 has meant that we have had to move most things online. The positive from this is that we have been able to reach out to more people from other areas of the country to offer them help and advice. We often have speakers who attend from local charities and organisations like Solent NHS Trust.  We are happy to be community partners with Solent NHS Trust as it enables members to be able to gather information and ask relevant questions.

“My future hope for the group is for it to continue to grow and to reach and help more people. We are now busy planning interactive online activities. I am also encouraging parents and carers to interview each other and to tell their stories. It’s empowering to be able to hear someone else’s story especially when they explain how they have overcome life’s challenges. It makes you realise that you don’t have to travel this journey alone.

“I am happy to say that with the right support and interventions my daughter has made so much progress. I cried when it was coming up to her 10th birthday because I couldn’t believe how much progress she’d made. She is now 13 and I couldn’t be happier about her progress. I can now finally see the hope of her thriving through life, regardless of her specialist needs.”

Patient Advice and Liaison Service (PALS)

Please visit our services page for specific services and contact details. Alternatively, contact our Patient Advice and Liaison Service by emailing or calling the number below. You can also give us feedback, make a complaint or share a compliment.

pals@solent.nhs.uk

 0800 013 2319

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The Act sets out exemptions to that right and places certain obligations on public authorities.

Email: FreedomOfInformation@solent.nhs.uk

Phone: 023 8029 6911/22

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Our administrative and managerial centre is based in Southampton.

While our services can be found around various NHS locations in Southampton and Portsmouth (and surrounding districts), our administrative and managerial centre is based in Southampton at:

Highpoint Venue
Bursledon Road
Southampton
SO19 8BR

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Central office phone: 0300 123 3390

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