Lost in Transition – part 11

The Man Who Came to Dinner

I've just got back from our first family holiday with my boys and my newly (in)significant other ‘Bob’. I wasn’t going to share this because I thought it might be a little close to home but seeing as divorce rates for parents of disabled children is through the roof I thought it might be handy to share.

All a bit of a scary idea really, proper time with my two boys in a confined space without wifi. Suicide in retrospect.

It should also have been apocalyptic weather but the Norfolk gods smiled kindly on us and we had a blissful time. A good thing too because all of them absolutely refused to play Pictionary with me (can't think why!). It’s not as if I went to St. Martins School of Art and worked as an artist for 15 years…. actually it is just like that.

But in short we had three days on the beach making sand sculptures, massive sand castles filled with lego figures and flags and Louis on his skimming board darting along the water's edge. We ended each day by toasting marshmallows while telling ghost stories and finally went seal watching at sunset. The kind of English holiday that memories are made of.

The boys were both seriously needy though...

It was as if they had to be 10cm from me at all  times. They even kept tripping me up walking in front of me. I get it, really. First holiday after the divorce with somebody else in tow. It's all a bit challenging changing the dynamic. After all they've had enough change for a lifetime. But Bob as usual was incredibly kind and patient. He's been here before of course with his two.

He hung back when they wanted me to themselves and answered all of their crazy technical, scientific and historical questions. I may just like Bob a bit more after seeing him with my two. Bob spent every waking minute making sure my boys were the most important people on the planet. He's a charming, kind man.

And now for the introspective bit...

Autism is a different way of seeing the world. It’s another language and Bob doesn’t speak it at all. For me it is weird to realise, but Bob has never met anyone with special needs before. He said something that I’m finding hard to shake,

“I don’t know what Max is thinking”.

Those few words circle like a washing machine. I see dads walk away from their ASD kids all the time. Max isn’t even his.  His own father didn’t stick around so why would anyone stick around if they find stuff tricky and they don’t have any reason to stick around? I’m trying to keep this in proportion. Bob gets on brilliantly with both of my boys. He spent this holiday flying kites, explaining how crystals form and holding my hand when he was sure the boys weren’t watching. He’s a good man. But it’s like throwing an enormous dinner party. Everyone praising the food, crying with the joy of their fully entertained taste buds, naming their first born after the dessert and then a small voice at the end of the table says…”but the starter was a bit salty.” So what do you remember of the evening?…yup, too much salt.


If you’re in the same place, you might want to check out these useful links…


The National Autistic Society- http://www.autism.org.uk

Epilepsy Action - https://www.epilepsy.org.uk

Lost in Transition – Part 4

My Neighbour Totoro

You may never have heard about the classic kid’s movie My Neighbour Totoro. It’s a brilliant and deeply surreal Japanese animation about a size changing rabbit type thingy and a Cat bus. I’m not really selling it but it’s quite something….

...it’s also the movie my boys put on over and over again the day my ex-husband left us.

None of us saw it coming, I’m not even sure my ex saw it coming. It was a Sunday morning and he was gone by 10.30am and that was very much that. The three of us spent the entire day under duvets on our sofa cuddling, eating biscuits, crying and waiting for the sky to get dark and the day to finally die.

I could say it was the worst day of my life but it wasn’t, not by a long shot but it was the worst day my boys had ever had especially for my little one, my sweet little Louis. Louis is Max’s little brother. He’s now 12 going on 42 and that is (I think anyway) because Louis had to grow up too fast.

When Max was at his worst, about 6 years old and Louis 4, I’d got them both super cute red and white striped PJs. They looked like old fashioned illustrations for hard backed children’s books, gorgeous.

The First Time...

The first time Max had a seizure the ambulance men cut his overpriced stripy PJs in half to attach heart monitor stickers. Top tip here dear friends, the sticky residue from heart monitor stickers is really hard to get off a grumpy little boy’s tummy…tonnes of moisturiser works a treat…You’re very welcome.

As the ambulance men hooked up all of their kit, Louis stood at the front door in the dark. It was so cold. It always is when Max has seizures. I’m not sure why but all the doors are left open, I never remember to close them. I also never remember to pack Max’s shoes but that’s another story. By the time Louis was 5 he knew how to operate the oxygen and suction machines. He reminds me to give Max his meds. He also takes the brunt of Max’s postictal rages.

For years I’ve left him with friends sometimes for weeks on end to take Max to appointments, assessments and treatments. He bounces from friend to friend, spare room to spare room. He was such a lonely little boy, I’m not sure much has changed.

Now Max is in Transition, Louis gets to go on the back burner once again. He needs me more than ever but I’m still metaphorically making him stand in the dark in those stripy pyjamas.

When people talk about young carers it sounds like such a small thing. A young carer is someone whose life is significantly impacted by a disabled family member. What it actually means to me is that I stole from him. I made him grow up too fast. I will spend the rest of my life trying to make it up to him. It frightens me but I don’t think I can fix it.


If you’re in the same place, you might want to check out these useful links…

The National Autistic Society- http://www.autism.org.uk

Relate - https://www.relate.org.uk

Epilepsy Action - https://www.epilepsy.org.uk