Left Brain Right Brain

Life’s been a bit of a challenge of late- and in my last blog entry I noted how much I seemed to be moaning about stuff lately so its nice to write a really positive entry for a change-

My employers (feel free to comment on how excellent the website looks by the way 😉 ) called me in for a metting last week and said they were aware of how much Naomi and I were struggling with things like keeping appts, attending hospital visits etc so they wanted to offer me the opportunity to work from home 2 days a week.

This is excellent news and I was totally bowled over and couldn’t thank them enough. So, proof that the corporate sector do care about their staff sometimes!

I’ve just had a read through of this blog and decided I’m a right moaner.

There are good times- this week, Anthony (my son who lives with his Mum and I see at weekends) rang me to tell me he’d got a new bike and was offered a free one to go with it so he got a little one for Meggy.

I’m so so proud of him. He’s one of the most thoughtful people I know and this is so typical of him to think of his sister. I can’t let myself get stuck in a pit of cynical despondancy, both my kids are worth more than that. Its just very difficult sometimes to see an end in sight as it were- a time when we won’t be fighting tooth and nail for Megan and have to put health, career, sleep and family aside whilst we do. Poor Meggy, its not her fault, but neither is it Anthony’s or Naomi’s. I have to work harder to get us some ‘autism-free’ time. If anyone would like to donate me a couple of million pounds in order for me to do that, that’d be great 😀

Its bugging me that I havn’t got around to making this blog totally standards compliant just yet. 😦

Unfortunately, I’m a bit swamped with web projects at the moment so it’ll have to wait- the front page validates but the rest doesn’t so apologies to anyone who might have come across broken bits.

You may remember how the LEA denied Megan a place at Nursery. Well, a couple of days ago, I spoke to Megans case worker at he LEA. This contact was prompted by a visit from Megan’s Health Visitor. She was rifling through some papers from a totally unconnected point (nappies if I remember rightly) when Naomi noticed she’d had a letter from the LEA– Naomi asked what it was and Lucy- our excellent Health Visitor- says “Oh, its a copy of the Statementing letter from the LEA.”

Alarm bells ring- we’ve never recieved this letter dated from October 2003. Lucy lets us take a photocopy. It basically says that our opportunity to say anything about Megans Statementing will expire on 11th December 2003. Great. We’re dumbstruck- how could they not have sent us this letter? It closes by saying they will write to us by 18th March 2004 to let us know the outcome of the assessment. Its now way past the 18th March.

To say we’re angry would be something of an understatement. I phone the LEA then and there to see what the hell’s going on. Speaking to Megans caseworker, she says there’s no cause to panic as Social Services haven’t responded to the request for information which they’re legally obliged to provide. No surprise there- we still haven’t even met Megans Social Worker coming up for a year after she was diagnosed.

I explain how angry and let down we feel and demand a meeting with the head of the department. I also insist that I will attending the Statementing hearing- Megans case worker says that is not allowed. I insist. She refuses. I ask why. She says parents are never invited. I explain the meaning of the word ‘reason’ and why what she’d just said wasn’t one. She said it was because many cases were discussed at one hearing. I said I’d wait outside until Megans case was discussed. She went very quiet. I said I wasn’t going to let this go. She then said her superior was on holiday and would get back to me with an initial meeting. I said that was fine but the subject of me attending the Statementing hearing would be point one on the agenda.

I now have an appointment to se her superior on the 16th April where I intend to be as bolshy and high handed as they’ve been so far. I will get the best for Megan and they will supply it.

Life with ASD kids, whilst never the easiest of lifestyles is blghted mostly by that most evil of conditions: lack of sleep. When we got Megan diagnosed last year Naomi was exhausted as I was working which meant she had to look after Megan on her own all day and get up with her in the night as she (Megan) didn’t really sleep much at all for the first 3 years of her life.

Diagnosis brought the primary relief of being given Valleragn for Megan which we could give to her and which would help her sleep- she goes to bed about 8.30pm and gets up about 7am usually.

Naomi and I cherish the post-8.30pm time period as its the only time we can watch somethinbg adult on the TV, talk to each other without running around after Megan or just read a book with a glass of wine.

Unfortunately, over the last 4 days it seems Megan has adjusted to something (as she doesn’t talk its very hard to say what) and now screams whenever we try to take her to bed. Bedtime is getting slowly but inexorably pushed backwards. We’re now waiting for her to fall asleep then carry her up to bed- this usually happens by about 9.30-10.00pm by which time we’re both exhausted and don’t have the time or energy for each other. On two occassions (including last night) she’s also woken up early. 4.30am approximately. And, yet again unfortunately, she’s very attached to Naomi right now and screams if she’s not around.

I love my wife very much and am really worried about what this is doing to her. Apart from the sheer physical exhaustion of looking after Megan for approx 16 hours out of every 24, the mental strain is enormous- I’m constantly in awe of her ability to cope but I know it gets her down. I do what I can to alleviate the strain but as I’m at work, poor Naomi’s still right in the middle of it all day, every day.

We’re also finding it increasingly difficult to keep things together financially, last week for example, Naomi concussed herself and I had to take 4 days off unpaid to look after her and Megan- this creates a bad atmosphere at work and directly affects our finances. The end of this month is going to be difficult to say the least, we claim all the benefits we’re entitled to so can’t expect any more. Life’s a bit of a challenge at the moment.

In the last of this guilt-ridden mass update, I thought I’d let you know how Meg is herself.

Basically, she’s great. Her speech is gradually improving- she’s using words more and more often although we’re not convinced she see’s the need to talk much!

We’re trying to put together a plan for her to learn through play a la Son Rise and our Play Therapist. Could take years but it’ll be well worth it.

You may, or may not, have heard of Son Rise.

Its basically revolves around the concept of unconditional acceptance and bringing the child out of isolation. Looks quite interesting. Unfortunately its American and costs $lots$. They do run courses over here though and some people have had some joy getting their LEA to fund or part fund their course. Have a look on their UK forum for examples.

We’re going to have a go at getting some funding for it as we’re now seriously considering home educating Megan, at least part of the time. This is due to our bad experiences with the LEA mainly. We’re a bit concerned about the social aspect of it but at the end of the day we’ve got to do whats best for Megans education as it seems the LEA aren’t going to take responsibility.

Other options include leaving our LEA area and moving somewhere with a better attitude.

OK, so I haven’t updated this for far too long. I could wheel out excuse after excuse but the truth is that both my arms were chewed off after a week long fight with 6,291 aliens that landed in the back garden and who abducted me and tried to, um, probe me- hence the week long fight.

Honest.

All Party Parliamentary Group on Autism (APPGA) launched their manifesto last year.

Please ask your MP to support families blighted by ASD by asking them to add their name if they haven’t already.

Thanks.

Naomi today had our first visit from an ASD specialist. I don’t want to put his name on the Internet as not everyones happy with that.

I wasn’t there as I was at work. Apparently, after a shaky start he was a nice, decent guy and basically what he doesn’t know about Autism isn’t worth knowing.

Naomi thinks he came with a few preconcpetions. Basically, experts aren’t prepared for people who stand up to what they think should happen and get a bit annoyed. We think this has happened with Megans Doctor. He gave Naomi a bit of a hard time recently because Megan wasn’t enrolled in a school yet. Our answer to that was ‘find us one we approve of’. Just because Megans Autistic doesn’t mean we’ve any intention of sending her somewhere thats not up to scratch. We’ll tutor her at home before we let that happen. Not that we think it’ll come to that.

So, anyway, along comes this guy today with our Doctors judgement ringing in his ears no doubt, but after Naomi explained to him that we were just as eager as our Doctor to get Megan a place, but that second best wasn’t going to cut it for us and after Naomi explained our horror-show at the school Megan did (vey briefly) attend, he actually started to listen and communicate.

Naomi liked him quite a lot and thinks he’s obviously very knowledgeable. He didn’t push Megan and is obviously very comfortable around her (he also said she was beautiful- which of course she is!). Hopefully he can give us lots of tips and info about behavioural issues, sleeping, toilet training etc. Lets hope now we’ve persuaded him we’re not neurotic psycho-parents he’ll be a good resource.