Additional Needs

To the dad of the boy with a disability in the cafe...

Posted by Ceri-Ann Brown on 3rd March 2020 Additional Needs, Advice & Support, Disabilities

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Every Saturday my family and I meet up for breakfast. We call it the Saturday morning breakfast club.

Sometimes Amy is with us, sometimes she is at respite for the day.

My family is generally sad when she isn’t there as they want to see her, but equally they understand my need for a break.

Often when we go for breakfast, Amy becomes distressed. She wants to be on the go all the time. She can’t eat so has no interest in sitting at a table.

She’s a child like any other, and children want to see and do things. I sometimes find it a real challenge and struggle to eat my meal or drink my coffee.

Sometimes I dissociate from conversation because I am either stressed, or distracted trying to calm Amy for long enough to eat my meal. Every time we leave the house I take her iPad, an array of toys, pain relief meds and whatever medical equipment she may need.

Sometimes a member of my family (usually my Dad, Auntie or Grandma) will take her for a little wander so I can get some space to breathe and eat my meal uninterrupted.

It also gives Amy the opportunity to regulate her mood and spend one on one time with another adult.

I am so grateful to them; however I had hoped that as she got older it would get easier and that she may be more easily settled. If anything she has become more complex over the years, and due to her size now I can't just get her out of her chair.

When she is away from me I can’t help but see how other families go about their days.

I feel envy sometimes of those families whose children enjoy being at the table, and whilst they have their own challenges their issues are likely to change as their child matures and develops.

I saw recently a mum and daughter having a hot drink together. The mum had a coffee. The daughter had an amazing hot chocolate with all of the trimmings (cream, marshmallow, sprinkles, all that sort of wonder).

I ached when I thought back to my pregnant days - I had envisioned doing this sort of thing with Amy. A wave of guilt envelops me as I realise how much worse things could be… how lucky I am.

I acknowledge that I have some way to go in accepting that we do things differently.

So last Saturday, Amy was in respite for the day. They actually took her and a friend on an amazing day out.

We went to a local family pub, got ourselves seated with a nice hot drink. It was in that still moment I realised how intensely my body ached.

From the dressing, lifting etc. I chose at that moment to really enjoy the fact that I currently had no responsibility and that this time could be utilised to re-energise myself so I can try and be my best self for when I pick Amy up again later.

I was pulled out of my daydream by the sight of a man and child standing looking at the open fire.

The man restrained the child enough that he couldn’t get burned by the fire, but was encouraging him to take in the dancing flames and feel the warmth on such a cold day.

I don’t know if he was the child’s dad, uncle, carer, whatever… the point is I could see they had a close bond, and for the purpose of convenience I am going to assume he was the child’s father.

It was then that I noticed the child had a sensory chew toy around his neck.

It’s not the sort of thing Amy uses, but I’ve seen lots of her peers with them. They’re often children with a diagnosis of ASD, or a child that is a sensory seeker.

I wasn’t sure what this child’s diagnosis was. I watched them as they went and sat at the table in front of me. The man held the child on his lap and held him tight.

The man made eye contact with me and smiled. I smiled back.

Eventually their order came. The man had a coffee. The child had a full English breakfast.

When the food came the man placed the child in a wooden high chair. The child was bigger than my Amy.

I could see that this was a struggle, trying to guide the child’s legs through the holes. I really wanted to go and help, but at the same time remembered how independent and determined I am - maybe this man was the same.

He knew what he was doing.

I watched as he patiently cut up the meal into lots of small portions.

The child rocked and cheered and was clearly very excited. When the child was particularly noisy I watched as onlookers stared at them most likely judging and wishing the child would be quiet.

I either “ignored” the noises, or if the dad looked our way I offered a reassuring (hopefully not patronising) smile.

I wanted to tell him… you’re not alone!! If you had been here the other week you would have seen as my child flapped and thrashed and made unpredictable loud noises.

I too have felt those judgmental eyes on me. I know how hard it is just leaving the house sometimes not knowing what the day will bring.

The man spoon fed the child every mouthful.

The child would make eye contact with the man and smile. The man would warmly smile back at him.

Watching him, I felt quite emotional. They were both so happy in their own little bubble at that time. It made me think about all of the challenges we face but actually, if you take a step back and look in from the outside, our lives are filled with these small but beautiful moments.

The restaurant we were in does free refills on hot drinks (one of the reasons we go there so often!). My dad stood up to get us all some more coffee.

I quietly said to my dad “dad, can you offer the man behind you a drink?”. Initially he looked a bit confused; he hadn’t really seen any of what I had seen as he had been sitting with his back to them.

He asked the man if he would like a drink. I could see that he was in no position to get himself another drink, and probably needed and deserved it more than most!

He looked so surprised and happy and accepted the offer. A cappuccino it was.

It sounds so cheesy. But these little things are so important. We all came away from that moment so happy.

Being kind costs nothing. I felt emotional that the man hadn’t had any food for himself and that he was just downing brews for energy - this is how I operate usually (minus the feeding of my child, she’s tube fed.) and whilst I recognised that his life with his child is quite different to mine, we also had so much in common.

Once the child had finished eating the man held the child in his arms again.

He was so patient and loving with him. You could see how close their bond was and what a devoted person he is.

It makes me so happy to see people out in the community celebrating their individual diagnosis and living life their own way. In spite of the stares from strangers (hopefully not mine!), the child’s unpredictable behaviour and probably how tired he was feeling - they had a lovely time together.

The child didn’t seem to notice the stares, he noticed the amazing dedication of his dad and looked so happy and grateful.

I really wanted to go over and say hello properly. I wanted to say how lovely they both were. I wanted to tell him about Amy.

At that moment I missed her so much. I wondered where she was and if she was happy. It made me excited for the next week when we all went out as a family.

I know there will always be challenges, it may not be straight forward, she may not ever enjoy a hot chocolate with all of the trimmings, but function how we function and I couldn’t be prouder of her.

When the man and child were leaving her came over and thanked us again and said bye.

I felt proud that we had recognised the man’s needs at a time when he was indisposed. I hoped that we had added to their nice morning.

Sometimes a small gesture can make a huge difference.

On my down days I really appreciate the kindness of strangers, making the world feel like a happier, nicer place.