Jacob’s Journey: Sensory needs

This weeks blog comes from Tania Newton, Jacob’s mum. She tells us about some of the challenges they have had with sensory processing issues and how they are overcoming them. Thanks to Tania for sharing with us, if you’d like to see more of Jacob’s Journey check out Tania and Jacob’s Instagram @jacobsjourney2017.

Before becoming a parent to a child with additional needs the word ‘sensory’ didn’t really mean anything to me other then the five senses.

I knew that baby sensory was a thing but I thought that was just waving glow sticks around your baby to entertain them. Little did I know that Jacob would have a lot of sensory issues. Touch, taste, textures are all things we still struggle with daily.

Initially when Jacob was a baby I didn’t have to confidence to take him to baby sensory groups like all the other new mums. He was still in and out the hospital a lot. When I left the house I had to take a lot more then your average changing bag, we needed medications, tubes, syringes, pH paper…the list goes on. So I said to myself it just wasn’t feasible, but more likely I just wasn’t ready. I didn’t want the stares, I didn’t want to keep explaining his medical history, and I didn’t want to see all the typical children who were already achieving milestones. So I got on eBay and created our own baby sensory at home. Jacob loved it, all it took was a 70p foil blanket and some flashing lights.

But the big sensory challenge was yet to come for us. It all started with weaning. A lack of interest in food and a distaste for anything put on his highchair tray. You can forget baby led weaning, anything solid of any shape or size would be knocked off. Not even wanting to touch it he would flick it off his tray with the back of his hand, not wanting it anywhere near him.

This is unfortunately still something we struggle with to this day. Jacob will only eat smooth purées, no lumps and no solids, absolutely nothing except ‘bite & melt’ crisps. At two and a half years old Jacobs oral diet consists mainly of yoghurt and Pom bears. Yummy yes, nutritious and varied…not so much! It’s something we are constantly working on. And sadly something that many parents take for granted. Having your child be able to eat and drink, it’s a given, you never expect to be tube feeding and working with dieticians and speech and language therapists just to get your child to do what other children don’t even think twice about. Jacob has never tasted birthday cake, or enjoyed a mini milk on a summers day… not through lack of us trying but purely due to the sensory issues he has with different food types.

We are always trying to develop Jacobs tolerance for sensory activities. He used to hate getting things on his hands but he is getting better. With the help of activities at home and at nursery we encourage him to play with things like paint and sand It’s all about little and often, he doesn’t love painting and will only tolerate it for a short while, but I know he loves splashing with water so we let him clean up with water play.

I think we have to learn not to expect too much and to just move at his pace. It’s not always easy. I can’t wait for the day when we can play with play dough together, or do some finger painting, or even share a slice of cake and a babyccino.

The fact of the matter is sensory issues effect a lot of our day to day life. In ways we didn’t expect. But that’s part and parcel of getting to go on the road less travelled. It makes his paintings that little bit more special, it makes that bite of a chip for the first time a milestone achievement, and I wouldn’t change that. This whole world is a learning experience for not only Jacob but us as parents also.

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