Additional Needs volunteer Rachel shares her story about her autistic sons Toby and Teddy
I know that no two children are ever the same, however, our two boys are complete opposites.
One can talk for England and the other has never spoken a word in his life. One loves people and parties and the other would quite happily spend his whole life alone with just his iPad for company. One is bright and academic and the other has a severe learning difficulty and functions at the level of a 1-year-old. One has very obvious additional needs and the others are much more hidden – however, both of these boys are on the autistic spectrum.
I guess one of the most challenging things about the autistic spectrum is the fact that it covers such a huge range of needs. No two people on the autistic spectrum are the same, just like no two neurotypical people are the same. So although our boys are polar opposites they both still struggle in similar areas.
Let me introduce you
Toby is nearly seven and has the most infectious giggle – his little smile always lights up the room. He has very severe autism, is non-verbal, has learning difficulties, complex sensory issues and is also being assessed for ADHD. He’s not toilet trained yet so he wears nappies, and due to his limited understanding and stress caused by busy places he uses a wheelchair when he’s out and about. Toby likes to clap and flap when he’s happy and he communicates using objects of reference such as a cup if he needs a drink or pulling an adult towards what he wants. He loves his iPad and enjoys watching the same ten seconds of a video clip over and over again (usually in another language) and he especially loves watching the credits to programs or people riding up and down escalators. He also enjoys swimming, rollercoasters and he’s recently started horse riding at school too.
On the other hand we have Teddy, who is four and just loves life. He’s always on the go and always has something to say. He’s kind, funny and very bright. He also has an autism diagnosis and although his vocabulary is very good for his age, he often finds it difficult to read people or understand feelings and emotions. He is very outgoing, but he can struggle with his peers and often prefers adult company. He loves riding about on his scooter, going on holiday, playing with his marble run and he’s also very interested in bin lorries. He attends a mainstream school and appears on the surface to cope very well. He does however get very upset when people are not doing what they are meant to be doing or if things don’t go how he expects.
Parenting two children with very different needs can be challenging and finding things to do as a family can be tricky, especially during school holidays when both boys are out of routine. Toby especially really struggles being anywhere busy or noisy. But we have found one interest that our boys share; a love of escalators! Toby and Teddy love going to our local shopping centre early in the morning before the shops actually open and riding up and down on the escalators and in the lifts. At first we used to get some funny looks from the staff but now they seem to recognise us and smile as they watch Toby clapping and flapping and enjoying himself. We then leave just as the shops start to open before it becomes too busy for Toby to cope with.
It can sometimes feel like we live in a parallel universe to other people as our way of doing things is very different to other families, but that’s ok. Our boys need lots of structure and routine as that brings security in what can be a very unpredictable world. We know we can’t make everything in life work in a way that works for them but we are also trying to teach them ways to cope with the challenges that they face on a daily basis. Yes, it can be lonely at times, but we’ve learnt to try and not compare ourselves to others but to enjoy and treasure the moments of joy each day.
World Autism Awareness Day is on 2 April and for us we don’t just want people to be more aware of the challenges people with autism face on a daily basis, but also we want to raise awareness of the impact autism can have on the whole family. We are incredibly blessed to have our boys, but that doesn’t stop some days being very challenging. However, we’re thankful for the journey that we are on and for all of the love and support that we receive.
Rachel and her husband Joel live in Hexham, with their two sons Toby and Teddy. Rachel is also one of our amazing volunteers for our Additional Needs befriending network.
If you are interested in our work with parents of children with additional needs, you can find out more here.
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