Four words. Four very simple words with a massive impact.
There is a line in the play The Life of Reilly which is delivered by autistic actor Scott and it says “They say words behind my back that move to my heart and break it”. It’s about thoughtless people, I met some of those today.
The holidays are hard for us, when I say us I think it’s safe to say I speak for many. We are 4 weeks into the holidays the kids are out of routine and back to school anxiety is taking root. I’ve given my Katniss salute to a few when I’ve seen them out and about. Just so they know I know, I get it.
Reilly made it really clear today he wanted to get the bus into Town so that’s exactly what we did. I was a bit nervous about it as sometimes Reilly will want a certain registration plate rather than bus number, I am many things but a conjurer I am not. Anyway all good a double decker came immediately and we had a lovely ride in.
He has a route he takes every time and that’s through M & S and then straight to Fenwicks or HMV. Today was HMV for a new DVD. I should really take a camping chair as we could be there all day while he looks at all the covers. He bought Thomas Trouble on the Tracks then led the way back to the Haymarket. No stopping for an ice cream at Mark Toneys or Fenwicks so knew something wasn’t quite right.
A doughnut from Greggs and we got back on the bus. He didn’t want to get on it but seeing as I don’t live in Whitley Bay his choice was out.
It was horrific. From the second the bus moved he screamed literally til he couldn’t breathe. He was shouting go back and clawing at his own skin. He is covered in scratches. Now I knew if I turned around I would see, best case scenario would be 2 different types of reaction. Half bus thinking ah poor woman and child other half wish sh’d shut him up. Worst case would be a bus full of the latter.
A man and woman late 60s ish were sat in the seat behind me. I could hear moaning and would occasionally see her hands go up to her ears. Did I turn around and boot her? No maybe she had sensory issues, maybe there’s more to her story. So I persevered with Reilly. I cuddled him, I kissed his scratches, I explained we had to go home. Not once did I raise my voice or get angry with him. He’s non verbal this is his communication. Me getting angry would achieve nothing. In this situation I have to his anchor and safety net. I could almost hear them willing me to give him a smack.
Worst 25 mins Ive ever had with him. I was sweating, stressed and on the verge of tears. As the couple got off they avoided my eye contact and I heard her say to the driver in a snidey tone “THANK GOD FOR THAT!” Not satisfied that she was getting off the bus and out of the situation but wanting to drum up some comrades of hate, which she didn’t get. one lady said to me some people just don’t get it, they are awful and she’s right.
I did my best for my boy that’s all I can do. Everyone else has the luxury of moving their seat. What am I supposed to do? Get off?
I’ll tell you what YOU can do in this scenario.
- Don’t tut.
- Don’t roll your eyes to the person across the way.
- Don’t do massive loud exhales of breath behind my head you might lose your lips.
- Don’t stare.
- Say things like I know there’s maybe nothing I can do but let me know if I can.
- Be a friend. A knowing smile is enough to top up our batteries.
- Don’t judge. This isn’t bad parenting.
- If you get off at the same stop offer to carry a bag, ring someone. Our hands are usually full.
- Move your seat. If it’s too much I understand honest I do.
- Give us a break.
I did mouth out the window WTF is wrong with you which she saw. She just looked at me disgusted. I’m over it now but for the love of Tom people pack it in!
When I eventually got him home I tried to work out what happened. I know he wanted to go back to town and kept handing me my bag. He took my phone and typed this ….
He had changed his mind about the DVD he bought in HMV. Honestly I’m heartbroken. The meltdown was born through pure frustration because he couldn’t tell me. I had put my phone away to hold him on the bus. My little lad and what he does every day deserves a medal of Olympic standard.
I put him in the car, drove to HMV metro centre and changed his DVD. We went to the Disney shop and the lady on the till recognised him immediately from his blog and Facebook which was lovely. We had a Burger King and shoved some wool up the sucker in the build a bear factory (always a favourite).
Up yours old cow on the bus. Maybe some education from playing outside your house maybe useful?
OMG Christine I read this and it actually brought a lump to my throat. I know I commented on your post that I would have told her to f**k off and I stand by it. I honestly have the utmost respect and admiration for you as a mam and a parent. You deal with Reillys autism in the best way possible the way only you and Shane know how so those that don’t know any better are in no position to judge. They say ignorance is bliss unfortunately that is totally inappropriate where your beautiful boy is concerned. Keep on doing what you do and don’t waste any time stressing or worrying about people who don’t even deserve to walk on the same side of the road as you. I have only had a tiny glance into your world through your posts and blogs but I think you are amazing and if I was the Queen I would give you a bloody knighthood or ladyship or whatever 😀 keep smiling lovely your doing an amazing job xxx
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I’m so sorry this happened to you. That was a full on ‘Mary’ moment, although the “back in my day we didn’t have…” is a lie.
People are people, and they’re either accepting or not.
My 81 year old Dad, with dementia and Parkinsonism, would have said “poor little lad” when he was well, and may react differently now as he has his own sensory issues, but would never say “Thank God for that” in any scenario.
People are people. They’re either accepting or they’re not.
It says a great deal more about them than you, or Reilly.
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