Left Brain Right Brain

Megan has something called a ‘Statement of Need’ or ‘Statement’ for short. In this document is a set of regulations that the LEA (Local Education Authority) must adhere to. When Meg first started school last year we went through a monumental fight (as do all parents of SEN (Special Educational Needs) kids) to get Megan the education we felt would best suit her. Its all documented in here somewhere if you want to have a look but I certainly learnt a few unpleasant things about the Education system as part of that process (did you know that parents of SEN kids have *no right* to attend hearings about their kids that the LEA set up to discuss their inclusion?).

Anyway, as you may also recall, Megan’s two support assistants both left on June 30th so Megan has had to stay at home with us. Now technically, we _could_ have demanded the school meet Megan’s needs as 32.5 hours per week support is specified in her Statement and we fought like utter mad bastards to get that but to be honest, the school have done such a great job with Megan it didn’t even enter our minds. The other thing of course is that Meg needs as much continuity as possible and getting in two people that quickly might’ve been impossible.

However, the school have again performed miracles and managed to get two LSA (Leaning Support Assistants) who both have experience with SEN kids. One started today and the other one starts next Monday. This is great news as it means Megan will have 10 days or so to get to know these people before school breaks up for the Summer and thus she won’t be starting in September to a new classroom with a new schoolteacher and new kids *and* new LSA’s – a situation which would’ve been overwhelming.

Today was also Megan’s Statement Review so I went down to attend that. It was a mostly very positive meeting. Everyone agreed that Megan is a different little girl to the one who started school last September. She joins in with the other kids, she follows a basic session plan, she responds to the instructions of her LSA’s, her PECS work is becoming established and consistent.

However she does have issues concentrating and this is hampering her ability to make more significant progress. Finding something to motivate Meg is difficult as she gets bored very easily. Once she’s done something (swapped a picture for an item for example) she doesn’t see why she should _keep_ doing it. This means its impossible to say with any certainty whether what she’s doing is established and learnt. Our next strategy is to find ways of elongating Megan’s attention span and finding better and more concrete ways of motivating her.

You may remember I posted awhile ago that one of Megan’s two LSA (Learning Support Assistants) had to hand in her notice as her husband was being posted to Cyprus. A shame we thought and it will disrupt Megan but we’ll get through it because she’ll still be with her other LSA.

Can you tell where I’m going with this yet? No? Well yesterday, Megan’s second LSA handed in her notice. Its not her fault anymore than it is the other LSA’s but it is a bit of a blow. Suddenly, from having a difficult yet ultimately successful school year with Megan we now face a July with neither of her two familiar LSA’s who she adores and formed close ties with. In fact, the school don’t even know if they can get anyone in place at all for July so we may have to keep her at home which is far from ideal. This whole year has been about getting her familiar with her environment and the people in it and it worked well. So well in fact that she is now taking an active role in class and _wanting_ to join in with the other kids. This *will* set her back.

We also have the prospect of Megan starting in a new year in September with not only a new class and new teacher to contend with but also two brand new LSA’s to build a relationship with. These are not inconsequential things for Megan to get past. She has plenty of self confidence but takes awhile to adjust to new people and routines. We”ll essentially be starting again from scratch.

All this couldn’t have come at a worse time of course. Naomi (my wife) is due to give birth imminently which is another big change Megan will have to try and adjust to. It also has an impact on her communication programme. Her two current LSA’s are a vital cog in the machinery of her Speech Therapy and PECS (Picture Exchange Communication System) programme and so that will suffer too. Naomi nd I of course will have to pick up the slack in this respect. We’ve been holding back a little up till now as we didn’t want to ‘get ahead’ of the school but with this news we can’t really afford to not step up our involvement.

This whole situation is nobody’s fault and we totally understand the reasons both Megan’s LSA’s are moving on – one’s own family has to come first – but we can’t help feeling very frustrated and anxious about the impact this will have on Megan’s schooling.

Its been a turbulent few days for Megan lately. First of all, one of her LSA (Learning Support Assistants) has been off sick most of the week and she’s definitely noticed the change. Its made her uneasy and her more challenging behaviour (pinching/scratching/biting) is resurfacing. We’re not overly concerned about that as it’ll settle down. It’s not meant as naughtiness – its a way of communication for Meg. A bad way obviously but its not meant personally.

Also, preparations for the imminent new arrival (due in less than 4 weeks!) have started to impact on Megans cherished routine. For a start she’s going to have to share a bedroom with her older brother when he comes over at weekends and the bunk-beds went up today. She’s aslo noticed that Mummy is so big now that she can’t play as well as she used to. However, she’s obviously excited at seeing her new sibling and has taken to hugging and kissing Naomi’s tummy.

The biggst change today though is that for the very first time she’ll be at school all day. She usually has a session in the morning then comes home for lunch and then returns in the afternoon but today its her first all-dayer.

Its been prompted by her growing interest in the social aspects of school. Autistics are famously reclusive but over the last couple of months Megan has gone from being happy to be alone to really wanting to participate in what the other kids are doing. I took her to school the other day and had a genuine lump-in-the-throat moment – two of the other little girls grabbed her hands and the three of them started playing ring-a-ring-a-roses. Obviously, Megan didn’t sing along but neither did she just wander off. She maintained good eye contact with her friends and found the whole thing (especially the falling over!) highly amusing. Its the first time I’ve seen Megan want to engage with other kids. That’ll be one of those memories you take to the grave with you.

At the moment I’m at work waiting to hear from Naomi how it all went. My hearts in my mouth a little bit but I’m sure it’ll have gone OK. This school and these educators really have worked their socks off to get Megan to this point and I’m really glad that the efforts we’re putting in at home in not judging her autism in a negative way and always including her in everything are paying off – we have a mostly happy and confident little girl and thats good enough for us.

A couple of things happened over the last few days, both unexpected but with entirely differing perspectives.

Firstly the sad stuff. When Meg finally got her Statement (see archives 2004 for the horror story in full) she was allocated 32 and one half hours per week with an LSA (learning support assistant) whilst at school. The school in question wisely decided to split that over two people each doing 16 and a bit hours a week each.

The two people the school employed were (are) fantastic with and for Megan. I can’t tell you how much Megan has gained in confidence and ability since being under their care. Naomi and I totally trust them and most importantly, so does Megan. It wasn’t easy and there was a rocky period – Megans not so good with change and her lack of ability to communicate easily made it hard going for awhile but we all persevered and Megan benefitted.

Sadly, one of Megans LSA’s has had to hand in her notice (her husband is in the services and has been re-posted to Cyprus). Its very sad and I don’t think she’s especially happy about it herself but for Meggy its going to be tough. It means getting used to another LSA and more disruption. Totally unavoidable and nobody’s fault but a bit sad all the same.

However, on Sunday my faith in human nature was restored somewhat. I’d taken Meg for a walk down to Sainsburys and we were on our way back when we were approached by a gaggle of 8-9 year old chavs-in-training (Burberry/Hoodies/Bling) and I girded myself: these are the usual sort who see fit to take the piss out of Meg. However as they approached, one by one they strolled nonchalantly past us each nodding at us and saying “Alright Megan?”

Once I’d got my jaw up off my chest I managed to ask them how they knew Meggy and they said “we go to school with her”, looking at me like I was a nutter.

This may seem like nothing to you but for us and for all parents of disabled kids one of the hardest things about your child going off to school is coming to terms with the certainty your child will be ostracized and bullied. To have my fears exposed and so lazily thrown aside was a great, great feeling. These kids weren’t judging, or patronising, or sneering, they were just saying hi to someone they went to school with. Let me tell you – that felt great. I don’t mind saying that I was a bit teary on the way home and Naomi and I had a bit of a cry. Stupid probably but this meant so, so much to us.