Tag Archives: screaming

We’ve Kind of Been Here Before

3 Jun

Since I last updated here, it’s all gone a bit wrong (again).

Small Boy has been out of school since two days after the start of the summer term. It was almost impossible to get him back to school after Easter, but the crunch came when I had Small Girl at a Camhs appointment and I spent 3/4 of it talking about SB. I had the light-bulb moment where I thought we’re damaging him, leaving him every day somewhere we have to drag him to screaming. The screaming is communication; all he can say is help me, and we’re not listening. We need to change this.

I drove SG back to school for the afternoon session and he appeared at the staff room door while I was letting SG’s PSA know she was back on the premises. He had seen my car, and that I hadn’t driven straight off. He didn’t speak, just looked straight at me with tears shining in his eyes and wrapped his arms around my waist. I told him to collect all his belongings and to wait for me by his coat peg. Then I told the staff that the only sensible and kind thing I could do was to remove him until further notice. I assured them it was nothing they had done wrong (it really wasn’t) but it was hurting him, and my job was to protect him.

The relief on his wee face was a wake up call if ever I needed one. I sent a text to Hubby to inform him of what I’d done, and not to be surprised if he called and heard SB in the background. And then we waited.

The first two weeks were the worst. Somehow I’d got it into my head that away from the hyper-stimulating environment (or whatever) of school that he would quickly bounce back and “be himself.” That didn’t happen. He was rude, angry, aggressive, even violent, and my heart sank as I wondered if I had somehow made a bad situation worse.

But I hadn’t, and my instincts were right. One day I got a smile, a genuine one. Then he asked a question – about the platypus as it happens – and we spent half an hour on Google, learning everything we could about the strange and frankly terrifying critters, and now, several weeks on, I can almost say I have my boy back.

He’s still angry, and frustrated, and horribly panicked about any kind of change to his routine, but the absolute terror has mostly gone from his eyes. School are continuing to be wonderful in their support, and there is a team dedicated to trying to “fix” what went wrong. The only problem is that without the input of specialist services that deal with mental health issues, specifically those of young autistic people, we might not get much further. And guess which service we are still waiting on? Yes, you know it.

Without knowing just what he can’t cope with, there is no way we are prepared to attempt to put him back into full time schooling, just to see the very same thing happen all over again. The stumbling block is that being only just 11, he has no idea what his triggers are. Having Teen Boy around is helpful, as we can take a stab at the worst of the probables, but they are not definite. TB has told us it was several years later that he finally managed to start filtering out the worst of his sensory issues, so it might be that part of what we have to do is wait until SB can do the same. Which doesn’t help much with school, but I refuse to rush him. He is autistic, and I will not shove him into a mainstream neurotypical pond and demand he swims like the NT fish because he can’t. And why should he? If he were blind, or in a wheelchair, the system would know it had to adapt for him. But because you can’t look at an autistic person and see the autism, for some reason it’s acceptable (well it’s really not but other people think it is) to squash and squeeze and push them until they are stuffed into the same round holes as everyone else, no matter that they are perfectly content to be square pegs.

Well, this mumma says no! My square pegs require square holes, and if it takes yet another fight, bring it!

In the mean time, SB is coping with one hour of practical science once a week, one to one with a PSA, and for some reason, 90 mins of PE too. Rather him than me *shudders*.

For another time, I’ll write about our tentative journey into home education.

 

Anxiety Overload

9 Mar

Morning. I’d say “good” but that would be a lie.

M is in school, and she was, or at least she seemed fine when I left her in the care of her temporary TA at 9 o’clock. Whether the day goes well or not is too early to say.

We knew last week that the estimable Mrs T would not be in today, and plans were made to ensure M had a 1 to 1 that would be there for her today. She really can’t manage the school day without some emotional support; so the school arranged an unknown person to come, as all regular temp staff were unavailable. This appears to have been the proverbial straw that broke the camel’s back.

The weekend started with howling and crying on Friday evening as she discovered her timetable for Monday in her school bag, along with Tuesday’s one (Mrs T is super-organised). And then the entire weekend has been punctuated with sobbing fits, crying, wandering about attached to various comforters like her fleece blanket and her favourite pink cat, or alternatively screaming at her brother, or me, or her dad, in an attempt to control something in her confusing life, be it her toast or the socks she was wearing.

I can’t bear her behaviour when she’s like this, it’s desperately wearing on all of us, but my heart breaks for her – being so anxious about something that in all likelihood will be fine must be exhausting and frightening for her. It’s times like this that if anyone were brave enough to tell me that “autism is a gift not a curse” I might truly be tempted to punch them. Try telling my eight year old her autism is a gift! She was up more in the night than she was asleep, roaming the house with a belly ache and unable to settle, or even to process what was wrong. I knew, and yet I could offer nothing but reassurance in the form of cuddles and encouragement to curl up in the blankets and try to rest.

I know there are times when her breathtaking memory for details or her total recall over song lyrics is wonderful, but for now, today, autism can do one.

Not a Great Day

14 Oct

I don’t know what is going on in M’s head right now but she’s not in her happy place, that’s for sure.

The darker mornings are definitely helping her not to get out of bed so early, which is a real blessing in the half term. However, anything – and I mean anything – I try to get her to do, from eating to getting dressed, has been met with piercing screams. Sadly she has also been like to this to B, which isn’t great for either his sensitive ears or his nerves. I’ve been realising that he takes her sudden noisy mood changes to heart more than is healthy, BUT, and this is important, he still cannot resist winding her up. He really should know better by now.

Anyhow, I thought getting everyone around the table for a delicious brunch of eggy bread might settle her, and it did for about half an hour. The screaming began again over something that was so insignificant it can’t even be called anything, and I stepped in. M was sobbing, and no cuddle was enough to comfort her. I suggested she might try and draw what was the matter, as it as helped in the past. To be honest I wasn’t expecting her to agree as she has been spectacularly resistant to anything she perceives as a demand, but she headed for the kitchen to find pencil and paper. She drew this.

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It broke my heart to see she labelled herself as bad. I’m not daft enough to think that sad wouldn’t have been on her list, but it hurts when your child is so desperately unhappy.

Part of me is immensely proud that she was able to draw and write how she was feeling so accurately. There was no way I could get any more than a shrug from her in conversation so to be able to locate and then articulate her emotions on paper is a huge step. It also shows how visual she is, all that information was locked up in a child who couldn’t verbalise one word of it.

I reassured her that she is not bad, she might do “bad” things like throwing and hitting but that does not make her bad. I asked her if she wanted to draw things that would help her feel better, and she went off meekly to comply. Two “demands” in a row and she coped with them, a small breakthrough.

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This was her wish list. The top people are friends (not specified) and the bottom three are her siblings currently at home. On the right as you look at the picture is a TV and a sofa – her DVD viewing all sorted out.

She was able to explain that she thought her siblings didn’t love her, which they do, but they had all shut her out today (realistically because she was driving them nuts) so I went with her to ask for a hug from each of them. Then I reluctantly let her watch a DVD. I have been trying to wean her off too much screen time but faced with such an obvious plea I would have felt utterly heartless doing anything else.

The remainder of the day has been slightly easier. She got the play dough out after the DVD and was busy for ages making biscuits and cakes. I think the sensory feel of it is calming for her. Then we had a lovely Skype conversation with her big sister which left her laughing and happy. The visual side of Skype really engages her. She still hates the telephone.

I do wonder if she is struggling to process the change between school and holiday time. She was in a state for several weeks after the summer holiday, and now we have similar behaviour. She would choose in a heartbeat to be at home rather than at school but she is not good at the switch, and it seems to be getting harder rather than easier.

Right now she is asleep, and with any luck she will have a peaceful night. Tomorrow is another day. Clean slate time.

That Didn’t Last Long!

21 Aug

My oldest boy was asked yesterday how he thought M was coping with the new school term and he said, “We’re just watching and waiting.” He meant that we were expecting a backlash to all the changes and it was just a case of when. It happened this morning. Anyone who lives within a ten mile radius might have heard the screams that accompanied the morning routine, from a simple request to choose a pair of socks to her younger brother looking at her the “wrong” way.

I am amazed she ate her breakfast, but I can only assume hunger must have over-ridden anxiety at that precise moment. We had the repeated phrase “school is stupid” right until she was putting on her shoes and the fight went out of her. She went into school calmly but of course I am now assuming that she will have reverted to needing a lot of cuddles and down time as soon as she is back home again. She is also coping with an extra half hour as the juniors finish at 3 pm not 2.30 as she did in the infants class. It is bound to be tiring her.

I found the time to write a note about this morning in her contact book and made sure the teacher and PSA would read it first thing – maybe they can devise some plan to help her self calm during the school day.

She lasted two days before it all went wrong. With full time support and a tiny school. Autism sucks at times.

The Review Meeting

25 Sep

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.

I’m Fine

14 Jun

Who’s said that in response to a question of “how are you?” Pretty much all of us I imagine at some point.

Now, who’s said that when they are patently anything but fine? Still pretty much all of us?

Yeah, I thought as much. It seems to be that the worse the situation the more likely we are to brush on a stiff smile and utter the above words while inwardly dying a little bit. Sometimes it’s literally all we can say without the threat of tears. And then we make an excuse to rush off (busy busy, must dash) and on we go, keeping the real response inside.

It can be anything that makes us feel this way. Work, lack of sleep, worry over exams, worry over the future (in general) or worry about specifics. Sometimes I can’t even tell myself why I am anything but “fine” and I am an allegedly intelligent 40-something woman who outwardly appears to be in control of my life.

So, how much worse must it be for some of our children on the autistic spectrum? I am thinking today of my 6 year old daughter – she has severe sensory issues – and how she struggles so often with everyday events that other people take in their stride. On her worst days just getting out of bed will put her “wrong” and she can be crying that her pyjamas hurt before she even down the stairs. Then her weetabix, which is made the same way as the day before, is too hot, or too lumpy, or the spoon (and she always has the same one) is bending her hand.

And so it goes on. But actually, I welcome the days when she can tell me what is wrong as it helps me to be extra patient with her, and take more time. If she has a morning like this, I will spoon feed her (sometimes literally) through her morning routine, undressing, washing and re-dressing her, and finding her school bag, zipping up her coat and strapping her into her car seat. I do everything I can to lessen her load if I know

Sometimes though, she can just be “grumpy” for no obvious reason. She isn’t particularly whiny or clingy but she is (it seems) full of anger and pent-up aggression. These are the days I hate, when I know something is wrong but I cannot work it out. If I ask her if anything is wrong I get the barked answer, “No, I’m fine” and then I do really worry. I can see it’s not fine, but however I try to rephrase my question I meet a brick wall. 

She is an academically bright child, who can speak well, BUT, and it is a big but, she has desperate problems with verbalising anything that is important to her. It can be her version of important, like yesterday when she spent half an hour before we finally worked out she was referring to Yorkshire puddings, to a much more essential problem like what is precisely wrong at school that has turned you into a screaming nightmare every morning for the last 10 days? I was confident (wrongly it would appear now) that it couldn’t be anything that had happened at school because once I got her there she appeared to be perfectly OK, and she was not in this state after school, which is when the bottled up emotions used to pour out, in a stream of violence and anger and frustration. I even went as far as calling the school to ask if they’d had any new equipment delivered (no) or had someone moved all the desks (another no) and I was getting desperate for an answer.

I turned to an autism parents group that I am a member of and asked for brainstorming. A chance remark hit the target. We have two new children at the school. Now let me explain, it is a very small school – fewer than 30 children – so any newcomer is obvious from the start. These two children are brother and sister and have joined the infant class. They came for several visits over the course of two or three weeks, and they are quite delightful, quiet, well behaved and basically I defy anyone not to like them. Each visit, M had a note on her visual timetable to show her when they’d be coming. All was well.

I realised that the school had totally overlooked to put their permanent arrival on her timetable. Ten days ago they turned up at 9 am and are now in situ all day every day. M has been playing with the girl at break times in a small group (I can’t believe I can write that last sentence, it seems so magical) and is happy to call her a friend, but she has not been able to process the transfer of these children from occasional visitors to permanent additions.

I spoke to her about it when I realised, and took care with wording my questions. However I asked her she denied that she had any issue about it at all.

Interesting then, that since our talk, and my explanation of how sometimes new people join a group, and that’s OK if you like them, and also OK if you don’t, and that it takes time for it to feel like it did before, and indeed sometimes it will never feel like it did, but it might even be better, that she has not had one screaming fit or tantrum.

In fact, this was her yesterday after a regular day at school and a fantastic evening outside with the Beavers. She was tired after a hectic day but still coped well with some social interaction “after hours” I am so proud of her.

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Back on Track?

15 May

Well it’s Wednesday morning and I am having my coffee as a pleasant treat and not as a desperate calming measure after another stress-ridden school morning.

M’s PSA (Pupil support assistant) returned to school yesterday after 3 days off. I imagine that it was pre-booked leave before she accepted the job, and I have no problem with that, although I know in general teaching staff don’t take time off during term time. And I am also very grateful that it was a planned absence rather than illness so that we could prepare M for the change.

The temporary PSA was lovely. She has lots of experience, was very approachable, and knew not to let M take the mickey. All 3 days apparently went well, and M did some great work during school hours. 

However, M obviously did not appreciate the change in routine. The screaming, violence and meltdowns over what appeared to be nothings have been much in evidence. Until yesterday afternoon. After home time, a snack and a change of clothes she was quite happy to be taken off to dancing practice by one of my friends who had volunteered (a total change but one I had a) cleared with M and b) made a visual for) and then she ate her dinner and even coped brilliantly with her weekly hair wash at bath time without any fallout.

So, we have to assume that the change of PSA was something she just could not seem to process and deal with. This time at least. Maybe if it happens again she might be less anxious as she will fully understand that it is temporary. But for today my wee girl is happily chuffing along, back on track.

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Blatant use of a train analogy! Photo found on http://www.justyou.co.uk 

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