Oh Brother! Life with a sibling on the spectrum

Reilly has 2 brothers Things 1 & 2. Thing 1 Alex is 19, extremely funny and sometimes cool.  Thing 2 Ellis is 9 also very funny and extremely handsome.  All traits from their Mother, I will take credit.

Reillys autism has a big impact on their lives, more so Thing 2.  He would prefer to spend more time at his grandparents house (5 minutes walk away) than at our home. There are a couple of reasons why:

  1. Little sleep at home.  Huge issue for him as he’s a sleep monster.  Reilly has melatonin but this doesn’t keep him asleep it just helps drift off.  This can result in hours of screaming, playing, lights on and off during the night.
  2. Waited on hand and foot at Grandparents house. I am so busy trying to keep on top of normal things and stopping Reilly escaping, tipping food out, flooding bathrooms, jumping off window sills that the days of “mam can I have a drink” and it appearing 1 minute later are gone.
  3. He does not have to fight for attention.  Sad as that sounds it’s true.
  4. Reillys meltdowns upset him an awful lot. He cries when Reilly cries and it’s absolutely heartbreaking.

I hate it.  I hate that our family unit is so dysfunctional. I miss him even though he is at home a lot he should be there ALL of the time, that’s how it works.  Many, many people have said well MAKE him stay at home and to that I raise my middle finger. We are doing our best and his happiness is paramount. It’ll work itself out soon I have no doubts.

I asked Ellis some questions recently for the blog which I will publish soon but his very first answer shocked me and made me cry.  I said how do you feel about Reillys autism?  I expected him to say, he gets on my nerves, he never sleeps, he’s boring, he doesn’t play with me etc. All things he would have said just 1 year ago.

He actually said:

I feel guilty.  He went on to say I feel guilty that I don’t have autism, I have friends; I like going to the shops – I can talk.

I then got that feeling I get so often when someone is standing on my heart.

Ellis loves Reilly to bits and is very protective.  In the moments when Reilly is up for it he will chase him around our living room, encourage him to get on his back for a horsey and Reilly loves it squeals with excitement.  Little glimpses of how he would love them to play everyday.   Reilly also loves Ellis, not so much at the minute.  Ellis coughed recently and Reilly hasn’t forgiven him for that yet. When Ellis walks in Reilly runs upstairs and hides – this too will pass.

Having an autistic sibling can be really difficult.  Social outings as a family become thin on the ground as there are many scenarios that we avoid like funfairs, cinema etc we have to split and rarely get seen altogether as a family.  So much time is spent discussing Reilly at home with schooling and behaviours it can take over your life.   Reilly likes to disrupt what Ellis is doing we’ve had to put a lock on the inside of his room so Ellis can go in and keep Reilly out!  As much as Reilly can get on Ellis’s wick Ellis understands the difficulties Reilly faces and really does do his best to help him out.

He has no problem in telling people why his brother behaves the ways he does and can’t talk. Every time a new friend comes round I love to hear his explanations. He loves his football and his time with his dad doing that and sometimes Ellis and myself will have a sneaky hotel stay, just local and more importantly just us.  Little things that mean such a lot.

He deserves lots of credit for being so understanding, so loving and so brilliant. He celebrates every bit of progress Reilly makes and he’s proud.   Reilly I’m sure knows that Ellis is his best friend, buddies for life and his protector. Something I expect we’ll see much harder evidence of in the coming years.  God help anyone that messes with this little brother ❤️.
I have just this afternoon found out that the brilliant  Autism Northumberland based in Manor Walks Cramlington are hosting a siblings event for these little guys like Ellis to get together talk, play and be appreciated in May. Brilliant idea and he’ll be attending for sure. 

Buy My Brother is Autistic

Published by

Christine Stephenson

Really busy mam who runs her own charity, has 3 sons and learning about autism every day. Contact me at reillycic@gmail.com

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