I know those words are normally read with a sense of impending doom, but in M’s case I can all but skip to the door of the school, safe in the knowledge that in her case it is all working as it should be. Yes, I know too how rare it is to read those words about one of our special children.
Luckily yesterday was no exception,. The head teacher went through the Child Plan (this is possibly something we only have in Scotland but it is – when done properly – a very simple document that states the needs and wants of the child, the way it has been decided to address them, and an action plan) point by point, and the professionals and I discussed each point and then the head re-wrote the relevant parts that needed updating.
What was incredibly encouraging for me as a parent was that my views are considered very important. Again, I know so many parents – and I have been one of them in the past – who have been figuratively patted on the head and ignored, as if to say “what could you possibly know? You’re only the parent”. Not in this school; I am given due respect and consideration for being M’s mother and her expert. However many times I hear this it still makes me so glad that a group of people who are supposed to have my child’s best interests at heart all agree that I am pivotal in her care and development.
We noted some very positive changes. The “Challenges” that M was set last term, all of them simple ones like sitting appropriately (i.e. not hanging off a table or tipping her chair) have all been met every day to the point where she is almost ticking them off before her TA says she can; our challenge was to add a new one that would stretch her but that would hopefully be attainable. We are currently seeking an unambiguous way of saying “don’t lash out” which is harder than it might sound. This is mostly as M will thump her poor brother when in a rage – and as they are almost the same size and a small autistic child in a rage is very strong – he has been suffering of late. It is not as simple though as saying “no hitting”. Like any child M can be devious, and also with her autism she can be very literal, so she could quite likely state “but I didn’t hit him I kicked him” and then the whole point of the challenge is void. We are probably going for “hands down” and “feet on the floor”, both commands in the positive which always helps. and a visual to back this up as a reminder when the challenge is explained to her. I am going to be involved in keeping this challenge alive at home, another change in the routine, so we will get all the visuals sorted and then have a mini-meeting to make sure we all do it the same way.
The other important note from the meeting is that every time we said how the support has been working, and this includes the TA, sensory work including weighted jacket, short PE breaks, thera-putty, allowing M to stand up and walk around if needed, and responding to her needs as they arise, everyone was in agreement that the Child Plan reflected how essential it is to keep the level of support as it is. So often I have learned of support that has been withdrawn as “the child is fine” only to witness a backslide in behaviours and baffled staff. You wouldn’t take away a wheelchair from a child whose legs don’t work so why would you take away support from someone like M? Of course! Once again the curse of the Invisible Disability rears its ugly head.
M’s TA was present at the meeting, as was her teacher. The school secretary,the lovely Mrs B, was standing in to keep an eye on M, so I thought no more of it and shortly after her usual home time (we overran a bit) I collected M.
Oh boy!!!!!!! What an evening we had! I could do no right. I kept my calm, and even when M lost it to the extent that she repeatedly slapped her face over and over, I didn’t react. When she is screaming and self-harming in that way, unless I am absolutely certain I can calm her with a bear hug and her wrapped tightly in a blanket I have to stand back. Hard as it is, sometimes it will burn itself out faster with no intervention.
We got through dinner, how I am not sure, and then I knew disaster was approaching as both kids needed a shower and hair wash after their earlier swimming lesson. I took M first.
Well! Hold the front page. A SHOWER CALMED HER DOWN! No, you are not hallucinating. Evidently having the water at the correct temperature (on the cold side) and me holding the shower head very close to her skin to minimise the tickly sensation really must have the same soothing effect as a bath. I was absolutely staggered, but obviously delighted.
By the time her hair was dry and her teeth brushed she fell into bed with an almost palpable sense of relief. She must have been exhausted with all the screaming and hitting, and she slept all night for once, seemingly quite deeply too.
This morning I spoke to the head. Apparently she had forgotten to build the change of staff into M’s visual chart yesterday for the meeting, and the secretary reported that M would not engage in any work so she had quietly read her a story. This does explain the meltdown that ensued – unforeseen change to the routine – and the head was suitably apologetic. She’s forgiven, I’ve done it myself.
So, the date has been set for the next meeting, and I can look forward to the minutes of this meeting and to showing hubby just how well the system is currently working for our wee girl.
Last time I was moaning about being so tired. This was mostly prompted by poor M’s out of control behaviour since Monday morning, before, during and after school, which had utterly exhausted me. And I am fairly sure it wasn’t doing much for her either.
Anyway, I had wondered if she was beyond reasoning at the disappearance of her oldest sister to university on the Saturday. It certainly qualified as a big change, but even with weeks of preparation she just wasn’t coping. I decided we had to try a new tack, so I texted E and then we called and set up a video messaging session.
For some reason, although we could hear E, the microphone our end refused to work so I was acting as translator, typing what the kids said at breakneck speed, but to be honest we really didn’t even need to speak. M had been very keen to see her sister and she said she would talk to her (will just explain M rarely speaks to anyone on the phone, immediate family are generally OK but there are no guarantees) so I was a bit concerned when she came in, head down, concentrating on a Nintendo game. Turns out I needn’t have worried. E is as at home in front of a camera as any film star and so natural it was like having her in the room. She even leant forward to “hug” M and B.
And that was the end of the problems. Just like that. Literally as though a switch had been flipped.
Which I guess for a visual communicator it had. All the talk and explanations in the world were not good enough to convince M that E was still around, just a bit further away, and telling her about texts and twitter updates was not cutting it. But a sudden appearance of her beloved big sister in front of her, on a big screen, was enough to trigger a sense of calm.
Of course, had I not been so exhausted from dealing with the screaming, hitting, sobbing and throwing I might have thought about video messaging before Wednesday, but I refuse to feel any guilt this time – I was too tired to think. And now of course we know for next time. Web cams are so cheap these days that I might persuade my parents to buy one so M can “chat” to them on-line, and then just maybe she might not be afraid to talk to them at the same time. I am sure they really feel sad about not speaking to their wee grand-daughter but with the extra help of the pictures it might get her through a conversation.
All the talk of the “triad of impairments” and autism mentions communication, and usually people explain that autistic people can have trouble interpreting visual clues and body language. Some of those same people who have in the past told me my daughter isn’t autistic “because she has eye contact” would be very interested to see how she lights up when her sister smiles at her from 200 miles away.
Just goes to show: when you’ve met one autistic person………..you’ve met one autistic person.
This is a whinge. So you can’t say you weren’t warned.
I am sick of playing detective every single day since the schools went back. I KNOW it’s not M’s fault she is autistic, and I don’t want to change her, I really don’t – if she was changed she wouldn’t be her – BUT I am so bloody tired of asking the same question in a dozen ways in the hope she can respond to one of them, I am tired of thinking of ever more ridiculous reasons for a refusal or tantrum (and it’s a good idea to assume the ridiculous as it might be to me but not to M) and I am just plain tired of always without fail being the one person who has to justify M’s sensory world to everyone else.
And by “everyone else” I am including family, who have taken it upon themselves this week to tell me I am spoiling M and just playing into her hands. I beg to differ. If she ignores you it is mostly because she has no filters. This was explained by a paediatrician and actually I think I already half knew; she sees, hears, feels and smells everything all the time, and as she is young she hasn’t yet learned how to filter, which obviously leads to being totally overwhelmed and meltdowns. Or sometimes shutdowns. Instead of screaming and blowing her top she zones everything out. I have tried to explain that if she doesn’t respond and has a blank look in her eyes then she’s “gone away” for a bit and is not being naughty and ignoring them, but for some reason what is patently obvious to me is not to others.
So, I am tired, Some days I would like nothing better than for everyone except M and me to just bugger off out of it and leave the pair of us, snuggled up in some soft fleecy blanket to drift through a few hours where no-one has to explain anything to anyone else, or justify anything.
And then I wonder just how tired M must be. She lives with this x 100 every single minute of her life. No wonder my poor girl has meltdowns.
I thought this joint post was far too important not to be shared, and as widely as possible.
Suicide has touched our family, as in members of my family have been affected by other’s choices to end their lives, and it has spread devastating and heartbroken ripples.
There, I’ve said enough. Just read please.
She says, by @mammapolitico
Not a topic that gets blogged about often is it, Suicide? Not a common subject for discussion around the dinner table, or something you chat to your friends about over a coffee. If the scary subject of suicide has ever touched even the edges of your life, I bet it was skirted around and then pushed away to the back of the drawer marked “Things that happen but we don’t ever talk about”
The door was barricaded from the other side. The bed or some other heavy furniture had been pushed up against it. This was the wrong way round, wasn’t it? I was the teenager going through exam stress, learning how to be a grownup. The ‘grownup’ was on the other side of the door, making incomprehensible and barely audible speeches. I could hear the pain in his voice and didn’t know what to do…
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