In September 2011 our lives changed forever, by the time I sat in that room and was formally told Alfie had autism, I already knew. It seems like a strange word to use but in a way I had already started grieving for the child I thought we would raise and finding ways to help the child I had.

Alfie was born in October 2009 and was our third child. Up to the age of one his development was completely normal, he sat up, crawled, and starting walking. He was an incredibly easy baby and was always happy. He had started to babble and would clap, respond to his name and smile at everyone.

This all seemed to change very quickly and by 14 months old Alfie appeared to be locked in his own little world of silence. He would no longer interact, babble or make eye contact. He was an incredibly passive little boy who was very undemanding of anyone’s attention. He developed obsessions and always used to carry two identical objects everywhere one in each hand. He stopped eating most foods and would gag to the point of being sick at foods he had always loved. He became distressed by noises, smells, busy places and everyday life became increasing difficult. We couldn’t take him anywhere without him being very upset. He was happy at home running up and down the living room in the same pattern every time or outside on his trampoline where he would bounce round the perimeter for hours.

I had a feeling straightaway that it was autism. I’ve had the privilege of being an aunt to my amazing autistic nephew and recognised the traits. It was tricky in those early days, people telling me he would grow out of it and so many people who I spoke to had some wisdom to share about their neighbour’s cousin or a child that lived on their street who was like Alfie one minute and the next they were fine! This was one of the hardest things to deal with, I knew my boy better than anyone and I knew it was more than a phase.

Luckily for us the first time I met the Neurodevelopment team I was taken very seriously, it went from conversations over the phone about how young he was and how unlikely it was to be able to diagnose so young. To a weeklong assessment at the child development unit where everyone who met him agreed with our concerns. At 23 months old it was confirmed, my precious boy had severe autism.

Nothing really changed that day, I’m not sure what I expected really, we came home and I remember crying till I couldn’t cry anymore. I decided there and then, no matter what, I would achieve the best possible life for Alfie.

What followed has never been easy. Speech and language therapy, occupational therapy, we learnt Makaton, learning disability teams, statements, Education, Health and Care Plan (EHCP) and the ongoing battle that is Disability Living Allowance (DLA). Seriously, those forms are enough to bring the strongest person to tears. We’ve added on some other issues along the way - Alfie has migraines, chronic bowel issues and suspected epilepsy. He sleeps for around six hours a night in two to three hour blocks and needs 24 hour care to keep him safe. He has significant learning disabilities and very little understanding of the world around him.

The truth is, autism is hard word, its not all magical skills and quirky moments. Alfie struggles everyday to be part of a world that doesn’t really understand him. He has major sensory processing issues that cause him to be physically sick often, he eats a very restricted diet and has huge problems with his digestive system and bowels. He is very sensitive to noise and becomes distressed easily, he relies on ear defenders and a wheelchair to cope in the unpredictable outside world. Despite being part of a large family, Alfie often struggles to engage and needs time away on his own in his purpose built downstairs bedroom (another battle won!). Daily life is far from normal and his three siblings often miss out on things because it’s just not been possible with Alfie. They amaze me everyday too as they take it in their stride as they love him equally as much as we do.

BUT…. He is happy! He loves his people, attends an amazing special needs school and is developing at a rate that’s appropriate for him. It’s very likely that he will need care for the rest of his life and the chances of him living independently are very small but we never say never in this house. He has already achieved the un-achievable and he amazes us everyday.

Alfie has received some amazing support from Family Fund over the years. They have replaced his falling apart trampoline, the iPad that he relies on, numerous sensory items that help to keep him calm and support towards a family break.

“Our greatest strength as a human race is our ability to acknowledge our differences, our greatest weakness is our failure to embrace them.” – Judith Henderson

Read more about Alfie’s Journey on his Instagram page.

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