Autism and the next life

It was kiddo’s uncle’s funeral yesterday. We thought so much of him that we made him kiddo’s god father too. His beliefs, his passions and his moral outlook on life were exactly what we wanted kiddo to look up to.

I lost count yesterday how many times people asked me how kiddo was and how he took the news of D’s death. I felt like the worst parent in the world when I said, “He doesn’t know. We haven’t told him.”

Truth is, he wouldn’t have any understanding of the words I would have to try and put together to explain that D was now with Nanny Catherine in Heaven (probably drinking with her at the bar to be honest!). I’ve felt so torn on what to do about it. Kiddo takes in more of the world around us than we give him credit for. And he knows something isn’t right.

People and families fit patterns for kiddo. And for everyone in fact. When his aunty and cousin have come to visit i can see in his eyes that he is processing the shape and pattern of their family differently. But he doesn’t know why, because I haven’t told him.

Kiddo has a profound communication disability. Spoken words won’t do it. He would be able to read written words if I wrote “Uncle D has been born to eternity” but there would be no comprehension. At a loss for what to do, we made a special memorial from kiddo and us. We always loved our walks in the woods and uncle D loved his wellies. So we spelt out his name in kiddo’s magnetic letters and stuck them to Wellington boots in amongst a floral autumnal tribute. Kiddo was so excited about the spelling that he spelt it all over the house. That was a tough day for me!

After the funeral I brought the flowers home. Kiddo immediately noticed that some of the letters had fallen off and was outraged! “Mummy fix it!”. I wish I could fix all of it.

We have a photo for our shelf of kiddo and his uncle. This whole event in our lives has only spurred me on more to work on kiddo’s speech therapy and really help his comprehension develop. Because one way or another, over the years he will know what an incredible person D was. And as for his aunty and cousin (and of course Milo dog), kiddo has gained the sister we haven’t been able to give him and a third parent in his aunty K whom we are holding tight and won’t let go of.

This blog was written with K’s permission. D was 32 years old and died very suddenly in tragic circumstances. K supports me in telling you all how important life insurance and wills are. Especially when you have children with disabilities and additional needs. If you’re in the UK contact Mencap for advice.

Thanks for reading,

Danielle

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