Left Brain Right Brain

Megan hasn’t slept properley since she was about a year old. When she went for her two-week assessment, one of the things we wanted sorted out as a priority was Megans sleep as both Naomi and myself were close to exhaustion. Megan wakes for approx 2-3 hours every night between 1-4am.

One of the things it was suggested we try was Vallergan. This is an anti-histamine based drug used primarily to treat excessive itchiness in Adults and Children with ailments like Eczma or Psoriasis- the side effect of the anti-histamine is that it causes drowsiness.

We thougt long and hard about trying it. We were loth to give Megan a drug that wasn’t having an obviously beneficial effect on her- i.e. she wasn’t ill as such. However, it came to a head for us after an intense 3 week period of Megan refusing to go to bed intil gone 10pm, then waking up at about 1am and staying awake for another 3 hours, then waking up again at around 6.30-7am. We decided to try it.

It worked perfectly- Megan slept straight through. We gave it to her the two nights after that, again sucessfully, then gave her a night off it which once again she slept straight through. We’ve heard that kids become resistant to it so we hope to keep up the on/off treament and hopefully remove it altogether from her life. I’ll let you know how it goes.

Megan had a visit from an Educational Psychologist today. Its part of her ongoing assessment/getting ready for education episode.

He was a nice bloke who didn’t try to hard to ingratiate himself with Megan (behaviour thats always a guarantee of a few moments of awkward silence on the ingratiators part- Megan couldn’t give a monkeys). He explained that his data gathering methods would be two-fold.

First he would watch Megan- how she played, what she played with, how she interacted with Naomi and I etc. Secondly, he would be asking Naomi and I questions about what Megan knew in the three key areas of communication, development and interaction. The whole thing took about half to three quarters of an hour and we never felt pressured or compelled to defend aspects of Megans behaviour, which I can understand parents needing to do in some situations.

The kind of questions we were asked were fairly routine ones that we’ve already become used to hearing from Health Care professionals- does Megan talk? How does she communicate? Does she play with dolls? etc etc. All questions that were easy to answer.

All through this Megan was quite happy to do her own thing (as she always is) in that she would come and hug us or watch the TV (the Sky Guide-channel 998- is the channel du jour at the moment) or sing a song or bash my keyboard etc.

The upshot of all this was that the EP said he would write up a report based on his observations and that his recommendations would be to get Megs into a special needs nursery ASAP, which dovetailed nicely with what Megs Health Visitor felt was best and we should get Speech Therapy sorted as a priority-which we were happy to inform him we had well in hand.

I asked about a Statement of Needs for Megan. A Statement is apparently a very vital document that details what each child should recieve in terms of their education. It is vital that this Statement be precise and detailed with no vagueness in either provision or intent. The EP told me that this meeting was the first step to getting the Statement drawn up so I’m hoping this is the case- apparently getting a Statement is notoriously difficult so I’m still a bit wary.

I’ll keep this blog updated with the results of the report as we get it.

Looks like a good interesting source of data here.

Its basically an online library but with a section that concentrates solely on ASD.

New Scientist has a story about a possible Mercury/Autism link The piece says that whilst Autistic babies had startlingly lower levels of Mercury than other kids (the search results page uses the term ‘normal’ kids), the finding do not necessarily indicate a Mercury intolerance- the MMR jab for example has no Mercury link.

This looks pretty interesting – would be a good thing for Megan to dive around in and burn off any excess energy – unfortunately they’re pretty expensive so it’ll be a pressie for Xmas methnks.

Hm. OK, so its only been a few days but we’re already beginning to think we can rule the nutritional Autism thing out for Megan.

We’ll probably keep up the decrease in Dairy stuff but the rest of it doesn’t seem to be making much of an impact. Oh well- we’ll not abandon it just yet as it really has only been a few days but its not looking like a likely candidate.

Naomi ordered a book from Amazon awhile ago which arrived yesterday.

There’s an accompnying website with a large forum.

To be honest, we’re a little bit suspicious. The book seemed pretty much OK and fairly oriented in common sense but the forum goes a bit far, claiming that even Soya Milk is bad for those with Autism. I wonder what scientific basis there is for these claims and anyway the trends in what is acceptable in relation to food alter so quickly its impossible for u to be sure.

So what we intend to do is take it step by step. We’ll start by removing Dairy foods from Megans diet and see how we go- probably making Gluten the next on our ‘hit list’.

I’ll let you know if it makes any difference at all.

The purpose of this blog is to document my daughter Megans progress. She has recently been diagnosed as Autistic at age 3. Hopefully, I can achieve two things with this blog.

Firstly, this blog will act as my own personal wailing wall, giving me a place to record everything that seems relevant to Megan and her situation. Secondly, it may come to the attention of people who are like Naomi (my wife) and I are now i.e. ignorant of the processes and situations involved.

I need to be careful though. I’d hate to start seeing my daughter as a guinea-pig or solely in terms of her Autism. In fact we were ambivelant about accepting the diagnosis at first for that very reason- we were afraid that once she was labelled as Autistic that she’d be seen as Autistc first and Megan second. But I’m getting a bit ahead of myself- I’ll bring you up to speed.

Megan was born on 17-02-00 weighing slightly more than usual. The first few months of her life were totally normal- we didn’t feel concerned about her health or well-being at all. That changed however when she had her DTP jab.

I know there’s been a lot about the jabs (particularly the combined MMR jab) in the news but we (or rather I, Naomi was a lot more dubious than me but I managed to convince her) decided to go ahead with it and on the night of her first lot of jabs Megan began projectile vomiting and developed a temperature that peaked at 102 degrees. We phoned for an Ambulance and took her to A and E where they brought her temperature down, then told us they couldn’t find much wrong with her. We were relieved but by the end of that week we knew something was wrong with Megs. She seemed subtely different. There was nothing you could put your finger on as such but the difference was there, she was late walking and was uncomfortable around others.

We started taking her to our GP when she was about 2 years old. No-one there noticed anything. Her 30 month assessment by the Health Visitor came on went without the Health Visitor noticing anything different about Megs.

By the time of her third birthday, Megan still wasn’t out of nappies and couldn’t speak in any meaningful way. She’d parrot song lyrics and was fascinated by numbers (at the age of 30 months she could count up to 30) but communication was fraught to say the least.

Finally Megans GP noticed what we’d been talking about and arranged for her to have an assessment at our local Child Develoment centre.

The assessment lasted for a period of 2 weeks and took the form of a nursery with 3 other kids being assessed jointly with Megs. I’d booked some Annual Leave for the first day and so Megan, Naomi and I trooped down, nervous and unsure what to expect.

When all the other kids arrived it was obvious just how different Megan was to them- shockingly different. They could join in, communicate with the staff and other parents and reason. Megan couldn’t. Megan wanted to run around, singing, play with certain spinning toys and generally do her own thing.

During the two weeks of the assessment however, the staff worked really hard with Megan and (to our mind) fantastic results were achieved- by the end of the two week assessment she would make (fleeting) eye contact with others, responded to her name being called and would sit and join in for short whiles with group activities. I had booked some more Annual Leave for the last couple of days of the assessment and I was amazed at the transformation.

The following week was the Case Conference and we were formally told that Megan was Autistic. We were told that we would have a new Health Visitor who dealt with kids with special needs regularly, a Social Worker who would help us with the day to day needs we may have. Megan would also have Speech Therapy as it was obvious that there wasn’t much up with Megans intellegence- just her Autism. She would also be assessed by an Educational Psychologist to better examine what her options would be when it became time for school. We have also been offered a place at a nursery for kids with special needs.

Naomi and I are reeling a bit at the moment. There’s been a lot of information to take in all in one go and to be honest we’re still trying to come to terms with the diagnosis itself. Pardon the melodrama but it feels a bit like grieving at the moment. I may never lead my daughter down the aisle on her Wedding day. Naomi and I may never get to see her off to University and those thigns do matter to parents I think. They certainly matter to me. But on the other hand what matters more is that Megs is happy and I think she is, generally. At the moment we just need to process the diagnosis and assimilate the process that accompnies it so we can help megan get the best support she can get.

So there we are- up to date. I’ll keep this blog informed as and when things occur to me.