Apologies in advance as this is going to turn into an epic post. I need to get it written down though.
It’s been in my mind on and off (more on) in the last few months that I might end up having to home ed M at some point.
When I had the youngest two children I was fairly sure that I would not be putting them through the school system, at least not in primary school. I have no issues with the local primary – in fact the contrary – but I wanted to give myself and the children the chance to take 100% advantage of the life we have in the country and not to be restrained by clocks and timetables. I did however mean to take full advantage of the nursery hours offered as it’s the simplest way for a small child to socialise with local kids and I thought they would both enjoy it.
B immersed himself in nursery life with gusto, and truly looked forward to going every day. M seemed to enjoy it but the telltale signs of anxiety (as I now recognise them) started to show at home. Had I withdrawn her from nursery they may well have stopped, but I still think keeping her there and fighting for someone to listen about her increasingly strange behaviours was the only way she finally got a diagnosis, and honestly at the time the thought of autism hadn’t crossed my mind.
Anyway – by the time it came to put B into school I felt I had no option as I knew by then I would struggle to cope with M at home all day and no chance of respite from her. It sounds awful putting that in print but I was utterly exhausted from the everyday battles to achieve anything without screaming tantrums. I didn’t think I could justify keeping M at home and sending B as he might well have felt “shunted off.” B settled brilliantly into the education system which was a huge relief, but M missed him desperately and turned even more to me.
We had been rudely dismissed as poor parents by the paediatrician who we had begged to be referred to. We got the referral through the health visitor (who I am convinced thought we were making everything up). The paediatrican never spoke to us, arranged a meeting or even wrote, which now of course I would be fighting, but at the time I was also waging a war with the education authority over schooling for my older boy and had no spare energy left. I did call his secretary and beg him to call me even if he didn’t have time for an appointment but to no avail. He did however agree to visit the nursery to observe M. He stayed for an hour and sent this by letter
“…..stop trying to medicalise normal childhood development…….” Basically, because he saw nothing in ONE SINGLE HOUR there was no case and we were over-protective and attention-seeking parents.
Reeling from this, I was unable to launch a counter-attack until some time later. Finally M got her diagnosis in the autumn of 2012, after having been both at school and then at home for a prolonged length of time due to being a bolt risk.
She now attends school full time, with the support of a lovely PSA. She just about copes in a school with a total of thirty pupils, and I mean just about. There are plenty of times and activities that she literally cannot deal with, both in terms of anxiety and of sensory overload. Which leads me to think about secondary school.
The special needs provision in our area is absolutely dire. This is a fact. My highly intelligent older boy has to travel 150 miles every Sunday to an out of area school that can give him the education he deserves in an atmosphere he can cope with. There is a school thirty miles away that has an autism unit attached, but after a visit there a few days ago it is sadly apparent that even though the staff there are both delightful and dedicated, there is no way that M would cope. There is one main room, largish, and in that up to six pupils can be accommodated. There are a couple of tiny side rooms leading off a corridor, one of which has no window, and this is the sum total of the facilities. In one corner of the large room is a kitchen area, where the staff make their coffee. This is also the room where the “cooking lessons” happen. Just from a sensory point of view this would be totally unacceptable for M, and I imagine it must be a big distraction for anyone trying to concentrate on another subject.The “teaching” seems to happen by giving work to them and expecting them to get on with it – but apparently “sometimes” a teacher actually comes to the unit to provide a specific lesson.
Obviously I was only there for an hour and a half but half the children were part time, there was no sign of any teacher, the kids that were there were glued to computer screens (doing work not games I might add) and the whole atmosphere was very much along the lines of “out of sight out of mind”. I have a friend whose child is going to this school in the summer and I asked her about why she was so pleased with it. Turns out her son will be using the unit as his escape at break times as he will be accessing mainstream classes. I can see that working for him, and then the base would be a safe haven for him from the social torment of 1000 children roaming the school, but as for M it’s totally unsuitable.
So, on to another possibility. The flagship special school in the city. To start with, I notice from their website that it takes 90 pupils. That is three times the number that M is currently struggling with. To her that may well prove to be an impossible hurdle. I don’t yet know even if she could access the curriculum there as no-one has called me back. I will wait till next week and call again. I know that when we inquired about it for ds1 we were told he would not get the right education, and at the time we were happy with the answer as it meant the authority had effectively given us the green light to go out of area.
Which leads us to ………….nowhere. There really is nothing else. Nada. Rien.
M’s extremely high levels of anxiety would contra-indicate any school day where she wasn’t home in the evening so out of area is not on the agenda.
Home education it is then. Or right now it would appear to be the only possible outcome. I was planning to debunk a few myths about home education in this post but I think now I will keep them for next time.
If you’ve stuck with me then thank you for reading.
Today was destined to go badly wrong when I was ripped from a doze by the sounds of screaming and yelling from downstairs. Instead of waking me by crawling into my bed for a morning snuggle, M had crept downstairs to watch cartoons with her brother. I’m not sure what the yells were about but seeing as the clock said 9.45 (!!!!) hunger would have played a large part in the tempers flying – all my kids need regular feeding or they are uber-grumps. Rather like their mother.
Dancing class starts at 10,30 prompt ten miles away and I need to be in the car and moving by ten past ten at the absolute latest. Hubby ran to the kitchen to knock up a jam sandwich and get M sat down to eat. I ran about grabbing a cat lick wash and getting dressed at the same time as grabbing clothes for M. I dressed her like a doll while she gulped down her juice and we left. So, before we’d left the house the routine was gone.
We arrived and dancing and waited. And waited. And waited some more. Finally we found out that the lady who runs it was at a funeral but the teenagers who help would be running the class. OK, that’s good. However, almost all the girls were running on teen time and not dancing time, and it was over 15 minutes late starting. There was no piano, and therefore no big warm-up. Another massive change for M who does crave her routines due to her autism.
I bolted out the door after tipping off one of the teens that she might have a wobble and please keep an extra eye on her, and rushed off to the cafe for a restorative cup of tea, trying not to chew my fingers off in a worry about what state M might possibly be in.
Collecting her, she seemed happy and calm, which was a massive relief. We popped into the charity shop as we always do and then headed for the cafe where she gets her treat and drink for working hard at her dancing. For some reason M was hungry and chose the soup, not something she would normally have. The soup today was butternut squash and red pepper. I make (allegedly) the world’s best butternut squash soup, so she was keen. However, it arrived with obvious strips of pepper floating in it, and the soup, although blended, was a lot thinner than I make it. Not to be deterred M asked me to fish out most of the bigger bits of pepper, which I did, adding them to my plate (yum). She then stirred it until it cooled down enough for her to eat, and got on with it. Once or twice she got a bit panicked by the peppers, so I helped her out, but with the help of an extra slice of bread she finished the entire bowl. She even had room for an iced biscuit for afters, which I thought she certainly deserved after tackling the soup.
We made our way back to the car and headed to the supermarket for, amongst other things, raspberry jam of which we had run out in the week. It didn’t take very long but M was definitely running out of spoons, and she was shutting off on the drive home.
After a few tears about who was going to watch her dvd with her, she is curled up with my special teddy (who I think might just have magical powers) on the sofa. She has had so many changes to her Saturday, and any one of those could have thrown her to the point where she bolted or refused to engage, yet she has worked her way through them and emerged mostly smiling on the other side. I do wonder if lack of anxiety over school has contributed to her being able to cope. She is now on half term for a week and therefore doesn’t have to worry about being parted from me until Monday week. Whatever the reason I am extraordinarily proud of my wee girl today.
Bit of a good day today. Or in M’s case, an absolute belter!
Firstly I went to an autism seminar run by the National Autistic Society which was a) very good and b) I was out the house meeting new people but knowing I would have something in common with them.
Secondly, and more importantly, M went on a play date after school.
She was initially the first person invited to a wee birthday celebration of a little girl at school. Then a few more were invited. OK I thought, hopefully it won’t be so busy that she can’t cope and anyway the mum would be sure to call me if M gets upset.
Then the wee girl got poorly. Nothing catching – an ear infection – but she’s not been in school. Ah well I think, party cancelled, maybe it will happen another day. Mostly I was feeling sorry for the birthday girl, no-one wants to be ill on their birthday, especially not when you’ve reached the giddy heights of 7.
But, this is the great part, M was still invited! Apparently, wee girl was well enough to have one friend over to help her celebrate, and she still chose M. I did ring the mum to check she wasn’t just being kind, but she was firm that all her four children were quite adamant that M should come. They all like her.
We agreed that the mum would pick her up from school and I would collect her two hours later.
I arrived to be greeted with a delighted body slam, and it was announced I was just in time for the blowing out of the birthday candles. M had barely been seen – she had spent 90% of her time playing dollies with her friend and there had been such an aura of peace with having an extra child in the house that the mum is insistent we need to repeat the experience. I don’t think you’ll find me arguing.
M did need some very quiet TV “down time” when she came home, but to be fair she needs that every day after school. She even ate her tea after a mammoth whine about how it was “disgusting” but again this is usual regardless of what I dish up.
And she didn’t have a meltdown when I left her with her siblings as I dashed out the door to take B to Cubs.
Dare I hope that she actually finally has a real friend? I think I do.
What a difference a day makes in the life of an autism parent. And her family.
Yesterday morning M decided that every single thing I or her brother said or did between half past seven and five to nine would be a cause for screaming, running away, more screaming, punching the table, wall, clothing, (luckily neither of us) and nothing whatsoever would calm her down. I deliberately didn’t rise to any of it – although this is so hard – and just stated the facts e.g breakfast is on the table, your clothes are in the pile over there, we need to leave now, the normal kind of things that make up a school morning routine. If she refused to eat I said “OK but you will be in school and you will be hungry, just remember your choice is to be hungry or to eat”. The same with the refusal to get dressed “You will be taken to school in pyjamas”. This time she decided she would accept non uniform clothes but I wasn’t in the mood to cut any deals, I know M too well; if I relent once she will use it for ever more.
The wee man was getting visibly distressed by her rage, and I kept telling him not to say anything but to keep to his routine and keep his distance. For an eight year old who thrives on lighting the touch paper of her anger he showed remarkable restraint.
Suddenly at five to nine M was hurriedly throwing on her school uniform and racing to grab her coat and bag for the quick drive up the hill. We had no choice but to drive; even if we had been earlier she was in no fit state to walk. She held it all together and walked into school without so much as a backward glance.
I felt traumatised to be honest.Totally exhausted and on the verge of tears. I managed to sit through an hour of the Parent Council meeting with my head buzzing from the echoes of M’s screams, and made my excuses asap at the end. When I got home the tears did fall. I really hadn’t done anything differently. M loves routine and I strive not to change anything on school days as I know her anxiety levels are already high. Maybe it was “just” because it was Monday. I felt like a total failure. Which logically I know I’m not, but you know how it feels when it all goes so horribly wrong.
Her school day appeared to have gone pretty well, and the afternoon proceeded into the evening without too much happening that worried me. I didn’t expect her to do any homework or even her reading book, it rarely happens on a Monday. I thought the worst was over when unfortunately the request to put her pyjamas on was the trigger for a huge meltdown. It took me, hubby and dd2 to keep hold of her physically in order to a) keep her safe and b) carefully remove her clothes and re dress her. I expect some people are wondering why we didn’t wait until the meltdown was over, but we have learned the hard way that that will just prolong the agony. When she was all finished and safe to let go all she needed was cuddles but she gets so over stimulated she has terrible trouble “coming down”. Hubby got wee man to bed and I took M onto the sofa. Experience has taught us that she won’t sleep, even with melatonin, after a meltdown at night unless she is next to me, her obsession. Her anxiety prevents it. She has stated in the past that no-one loves her except me, and I don’t know why she thinks this but at least it meant she might relax with me next to her. She put her head on my lap and I pulled her weighted blanket over her. She pulled the hood of her dressing gown up to shield her eyes (she seems to become hyper sensitive to all stimuli) and finally gave in to the melatonin.
The only good news about a mega meltdown is it does appear to exhaust her so she really sleeps. This morning I had a bright-eyed wee girl in the bed for a morning cuddle, and then with some trepidation we went downstairs. And this is where I wish we had cameras filming our lives. Nothing happened this morning that didn’t happen yesterday. The same breakfast, same crockery, same lack of radio, same (almost) pile of clothes, etc etc. And yet……………
I won’t be silly enough to say M was a ray of sunshine delighted to be starting a new school day, Far from it. She doesn’t like leaving me, ever. BUT she went through her routine and we ended up at school in plenty of time before the bell rang, with no obvious signs of distress. She even knew about a change of plan as her PSA was expected to be a few minutes late, but she was fine with that.
And this afternoon the good mood continued. I had walked up to collect her in the sunshine and we enjoyed a stroll back home in really gorgeous sunshine. I managed to negotiate her reading her book by saying that she could have the computer time she wanted if it was completed, and she also left the computer without complaint to stuff down a big tea. She blipped every so slightly when she wanted a bath and got a shower, but she recovered from that quickly. She even coped brilliantly with a (fortunately) short power cut 20 minutes before bed.
So, who knows what tomorrow will bring? I have given up trying to second-guess my little one. There must have been something pretty awful going on in her head yesterday. Will I ever find out? I don’t know. I’d like to think that one day she will be able to explain when the demons are crowding in, so that I can try and help banish them before they take over, but until then every day is a waiting game to see which personality I get to see.