My son Daniel wasn’t diagnosed with Phelan-McDermid Syndrome until he was 17 years old. He also has a heart condition which resulted in open heart surgery in 2007 when he was 14 years old. He struggles to communicate verbally and uses mixed up speech and Makaton or picture symbols when frustrated.
Familiar people tend to understand what he is trying to say. He started at a special needs school at 3 years old and still accesses a SEN college now he is 22 years old.
We live in Leeds West Yorkshire where it is quite a challenge to access facilities for adults with Learning disabilities. I found it quite easy for Daniel when he was a child, as his special needs school and support staff were amazing and catered for his needs.
When Daniel left school at 19 years old the “professionals” struggled to find anything suitable for him so I googled everything in the Leeds area even the Wakefield district.
I found Pennine Community Campus college in Wakefield, made an appointment and took Dan for a viewing. It had everything; Farm animals, gardening, cooking, basket weaving, woodwork and loads more off site activities on offer Dan loved it. It was perfect.
His social worker put our application in but it got rejected due to out of area and lack of funds!!
We were told to access Leeds facilities. I wasn’t happy but did as they requested by placing Dan in a main stream college with support 3 days a week and a 2 day placement at a local day centre! He lasted 6 months and there was a very negative response from their staff saying Dan was a “loner” and wouldn’t mix with anyone. People who know Daniel will agree that he is far from being a loner! He is a likeable young adult with an amazing sense of humour and gets on with everyone.
I applied to Pennine again and appealed. His social worker agreed that he would benefit from going to Pennine now as Leeds failed to meet his needs.
We won our case and Dan is into his 2nd year and hopefully will get funding for a 3rd year.
Daniel has even met a young lady friend while being at Pennine, she is adorable and has her own complex needs.
Daniel is happy. Dan attends respite 30 days a year which he thoroughly enjoys. He gets a chance to meet new friends and increase his independence skills.
I get quite emotional when I think of Daniels future but it is what you make it.
NEVER accept 2nd best and always fight for what you believe in.
I am so lucky that I work in education and have learnt to fight for everything.
My friends and family are extremely supportive and has made me a strong mum.