Memories and This Is M by @manicmippismum #ThisIsAutism

By | April 15, 2014

D absolutely amazed me today with her memory skills, she really does have an incredible memory, the challenge is finding a way to tap into it and utilise it.

We were having our end-of-day chat, sometimes it’s very one-sided (how tired she is depends on how conversant she is) but it’s always a good chance to ensure that she heads off to sleep happy and with a smile.

I was talking about something and did a silly laugh and then said “gosh, that sounded like Annoying Orange”, which D agreed with. She then quoted verbatim a YouTube video she last watched in July 2012. Her Annoying Orange phase was extremely short-lived because I wasn’t keen on it and didn’t want D’s echolalia to surface with her repeating the phrases here, there and everywhere. It was a Super Mario sketch and she did the voices, the dialogue, everything.

I know it was roughly this July 2012 when she last watched it because she can’t spell “annoying” and I’m mega careful that she doesn’t go on to YouTube or surf without me present. For the past few months it’s been (near enough constantly) Mermaid World videos.

I’m amazed that she can remember something she watched nearly two years ago but the general day-to-day (boring) bits have to reminded – washing hands/brushing teeth/putting shoes away.

T’s memory is similarly incredible, he is an absolute sponge for football facts and statistics and, ask him practically any detail about a player – goals/red and yellow cards/stats/when last played – and he’ll instantly say the details.

Needless to say they both find it hilarious if I go upstairs and come back down again without remembering what I went up for, but maybe that’s just because I’m getting old….

This Is Autism

Tonight’s guest post comes from the lovely @manicmippismum aka Karen, someone who is always at the end of a text or tweet. We also share a love of purple, 80’s music and of course, our children, each having a boy and girl on the spectrum.

We have often joked that our girls could be twins – if you discard the genetics, the geographical distance between them and their age difference – they are very similar in their ways and their special comforter.

Over to Karen:

This Is Autism, This Is M:

“The following was originally written late at night on the 4th January this year. I needed to vent and it was badly spelled and punctuated – I have tidied it up. But this is my beautiful girl M when it all goes wrong. Her anxiety is a living thing, it is never the same two days running. Well-meaning people say “oh well she will learn to cope” but really, how do they know? Anyway, #ThisIsAutism.

If asked I have always said that I would take away the sensory issues from my daughter but there is an arrogance in assuming that she would want me to take away her autism, kind of “here was a magic pill she could take.” How can she separate the various parts that make up her autism and decide rationally that she would like it gone? And her super senses are a delight at times to her, when she can see or hear or feel things that I can’t, or when she can recall every single event in time order when I am struggling to recall the day at all, let alone in any clarity.

Today (4th Jan) that changed. I would take her autism away in a heartbeat if I had the chance. To see the anxiety that has been building for the last 3 days, and the behaviours that have occurred as a direct result of this anxiety, are heart-breaking. My beautiful, clever, funny, highly verbal little girl (and she is only seven) has been screaming, crying, punching, kicking and trying to run away. She can’t even tell me what’s wrong but I know. School starts again on Monday and she will be going. Now, don’t get me wrong here, I’m not some sort of monster. My wee girl has a full time PSA (that’s pupil support assistant to the rest of us), who is lovely, she has possibly the world’s nicest infant teacher ever, and she is in a school of only thirty children. Compared with even some special schools (not that are any suitable ones anywhere in the area but I digress) this is a tiny school and the sensory demands on M are kept to a minimum. She has ear defenders, a safe place to bolt to if it all gets too much, which is a den covered with screens and that has a soft blanket, cushions and emotions puppets to cuddle or to try and work out her frustrations. She has her own table outside the main classroom in a quiet area, she has the choice every single day of where she wants to eat her lunch, in the canteen or quietly in the classroom WITH a friend of her choosing, she has a very detailed visual timetable, she has sensory breaks, thera-putty, extra PE sessions, a weighted vest, you name it my little girl has the help and support from all sides.

BUT…Her skin is a mess. She is clawing at her ears which are ragged with eczema/psoriasis that is creeping so far down now that it is showing on her cheeks. The insides of both elbows are covered in a rash that frankly looks like pictures of ringworm from an old encyclopaedia I saw as a child and she has been raking her skins and ripping off her clothes ( yes the old soft label free ones ) that have until recently served her as old faithfuls. Because of autism.

There is no getting away from it. She is being tortured by her own mind. Even though she has been settling in rather well since August and has begun to tentatively build on acquaintance to the point of blossoming friendship with a couple of children (something we didn’t dare even dream of a year ago), the mere thought of school has brought her to her knees. She isn’t sleeping and god knows she has never exactly been gifted in the lie-down-and-doze-off area of life. Her waking, crying out, nightmares and insisting on wedging herself almost inside my pyjamas in an effort to gain a degree of comfort are taking its toll on us all. Last night she was in my bed just after midnight and nothing I could do or say would prompt her to leave. Anyone who tries to argue with an autistic child in the middle of the night knows what a futile task this is, so I take the path that leads to the most sleep no matter how poor quality and let her stay with me.

I am shattered, she is shattered, my temper is shorter than usual and all the kids can tell. I have to drag myself about as the cumulative effect of the sleep deprivation is having a worse effect than usual. On top of that today we had a funeral to attend. Hubby and ds1 were out of town so there were no babysitters and short of not going at all we had to suck it up. The service was outside which I thought would be easier on her sensitive ears then a being cooped up inside which is never a great idea. But I had reckoned without the extra stress of approaching school. On the walk from the service to the graveyard I nearly dislocated my wrist by keeping her from bolting.”

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6 Comments

Karen Sellers on 15th April 2014 at 8:24 pm.

I’m going to Google annoying orange now!
Seriously though, I can’t ever deny anything as M and R both have terrifying good memories and will quote huge chunks from films or songs even after one viewing/hearing. Just like D. With three teens in the house I try to keep a tight rein on their music as I live in fear of some awful lyrics getting quoted inappropriately.
Laughing here in agreement about going upstairs and forgetting why – we really are twitter sisters separated by distance! K xxx

Reply

Jeannette on 17th April 2014 at 2:35 pm.

Haha, I hope you’ve got away from the pesky Orange now. Have a sisterly hug xx

Reply

Karen Sellers on 17th April 2014 at 8:59 pm.

That orange is freaky!
Lovely hug thank you xxx

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Jeannette on 23rd April 2014 at 7:58 pm.

Back at ya! Thankfully all Orange talk now gone (relief!) x

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rebecca beesley on 26th April 2014 at 9:58 pm.

What a difficult situation about school and having to face that funeral too. x

Reply

Jeannette on 30th April 2014 at 9:08 pm.

It was, poor M and her family.

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