Friday, 14 February 2014

We finally get some good news

Following the advice of the school and F's educational psychologist C and I decided to apply for the Disability Living Allowance for F and yesterday I got a bit of an odd - and more than slightly - insulting letter about it.  The letter was basically saying that because we were applying for the DLA I had been put in charge of managing the money that F might be awarded and was full of rather patronising reminders that this was a position of authority and so should not be abused.  No where in the letter did it actually say that F had been awarded anything.

On a hunch I logged into my online banking and found that we had in fact been awarded the DLA and been back dated since the middle of December.  You can't imagine the relieife that I felt when I saw that; it means that we can now start planning a bit more for the future.  Once we have the official confirmation letter outlining the details of the DLA that F has been awarded - how much he'll be getting, how long he'll be getting it for before it needs to be reviewed, that sort of thing - we can start planning what we're going to do with the extra money.  It means that we can start saving on a regular basis for F's future, that I can maybe start driving lessons which would make life easier for all of us.

I have to admit that I was surprised when we were adviced to apply for the DLA; to C and I F doesn't seem to be disabled enough to warrant getting it.  But then after looking into it we realised that it's not just for those with a physical disability; it's meant to make life easier for those with any sort of disability.  Because F isn't neuro-typical every day things like going to the shops on the spur of the moment or suddenly deciding to go on a day trip out are impossible.  Things have to be planned for in advance with near military precision and if things don't go as planned then it can be incredibly stressful for all of us.  The best way I've seen ASD described is as a permanent state of high anxiety; F lives his life on the edge of a meltdown if the unexpected happens.  As he grows older then he will hopefully be able to cope with this better.  But there's no way of knowing what the future holds and if the little bit of extra money that we get can help him in any way then we'll take it.

Thursday, 30 January 2014

Living with a disabled child part 2

Now that we had F's official diagnosis we had to make a difficult decision; whether or not we would have any more children.  I'm the middle of three children and C has a younger sister so for a long time I assumed that once F was older and we were in a better financial position that C and I would have another baby.  But as it became apparent that F was different to most children we began to reconsider.  There were multiple reasons why we came to realise that it just wouldn't be practical to have another baby even before F's diagnosis became official; the financial aspect, the fact that it would impact our social life, our home not really being big enough.  But the final nail in the coffin was the knowledge that autism is a genetic disorder.  If you have one child with ASD it greatly increases the likelihood that you'll have another and while F is classed as high functioning a second child might not be.  I know this is going to make me sound like the worlds biggest bitch but there's no way that I could cope with F and a severely disabled child.  So the decision was made and F will be our only child.

Since getting the diagnosis there have been multiple meetings with the school about F and how best to handle him.  In some ways we were incredibly lucky; because F was already Statemented for his speech/sound disorder we didn't have a fight on his hands to get him Statemented for his ASD, unlike some parents.  We've had a few problems with the school; there was an incident of bullying earlier in the year that the coach of an afternoon club didn't intervene with but I complained to the school and it most sorted pretty swiftly.  I felt vaguely guilty when we came back after the Christmas break and found that the original coach had been replaced but as C said if he wasn't up to the job then it's not my fault he got replaced.

Another incident took place soon after F started in year one.  We were in the playground before school and F was running around and knocked into another boy in his class.  To my amazement the kids mother turned around and shouted at F.  She said that he'd been being mean to her son all the previous year and was sick of it.  Now this was the first I had heard of it.  I pointed out that F is autistic and has communication problems but they were disinterested and threatened to go to Ofsted about him (not really sure what they expected Ofsted to be able to do about it given that its their job to inspect teachers not pupils)  By this point I was growing obviously upset.  I do not deal well with confrontation and something like this is a real anxiety trigger.  To be fair to the parents once the children were settled I spoke to them outside and once everyone had calmed down a bit they were more reasonable but at the time it was pretty horrible.

One of the biggest consequences of F's ASD is the way it has impacted my social anxiety.  Because he's my child and obviously I love him more than anything else in the world any criticism of him feels like a criticism of me.  And because his ASD causes him to have more behavioural problems than a neuro-typical child he tends to come under more criticism, mostly from people who aren't aware of his condition.  Those I can mostly ignore but it takes some doing sometimes.  It's the criticism from those who I'm close to and who are aware of his problems that is the hardest to take.  Disapproval from friends and family members can be devastating.

Well, this has gotten way more depressing than I initially meant it to be.  So to end it on a better note I will say this about F - he is a joy to be around.  He's got a fantastic imagination and a curious mind that is always looking for answers.  He even got a certificate for Worker of the Week from school for always asking interesting questions!  I wouldn't swap him for anything, and I'm not just saying that because when he's with us we get to skip the queues at theme parks!  It's a cliche but he's my pride and joy and I can't wait to meet the extraordinary grown up that I know he's going to one day be.

Wednesday, 22 January 2014

Living with a disabled child

It's coming up to 18 months since C and I were given the diagnosis that F is autistic.  It was not an unexpected diagnosis but it even though it was one we were anticipating it still came as a bit of a shock to have it officially diagnosed.

F had always had difficulties communicating; he didn't start talking until he was more than 2 years old.  In fact it was at his 2 year check that we discussed it with one of the local health visitors who referred him to a speech therapist.  By the time he reached the age of 3 he was recieving regular speech therapy but it was soon clear that he needed more help than the occasional appointment would give him.  He was attending a regular nursery but his speech therapist believed that he would benefit from more intensive sessions and recommended that he be sent to a nursery with a specialist speech unit.  It was at this point that F recieved the diagnosis of oral dyspraxia or as it's more commonly called speech/sound disorder.  He was able to understand everything that was being said to him and in the comprehension tests that he was given he scored above average for his age.  It was just that he couldn't vocalise everything that he wished to say.  Because I spent so much time with him I was able to understand him most of the time but for family members who didn't see him that often much of what he was trying to say was nonsense.  This lead to him on occassion becoming incredibly frustrated.

Once we had is diagnosis and the recommendation from his speech therapist we were able to apply to the nearest school with a speech/sound unit.  Because F was born in the first week of September he was entitled to another full year of nursery education; C and I consider his birthday being then rather than a week earlier one of the luckiest things that has ever happened to us.  If he'd been born at the end of August rather than the beginning of September he would have been going into reception one of the youngest in the class as he would have just turned 4.  As it was he was going into nursery as one of the oldest instead.

Once F started getting intensive therapy he thrived.  It was a hard thing for us all to adjust to; because the nearest school was about 5 miles away with limited access to public transport and me not being able to drive, F was driven too and from school by a taxi provided by the council.  I remember thinking the first day he went that he seemed way too small to send him away with strangers but all the drivers and escorts were really good with him and I knew that he was finally getting the assistance that he needed.  The only times it was hard was when the taxi firm sent a different escort to the one that he was accustomed to; he would refuse to travel with the new escort as he didn't know them.  If we were told in advance that it would be a different one then we could tell him and while he wouldn't be happy about it he would cope.  However if one just turned up on the door step that was a completely different story.  It was this more than anything that first started us thinking that maybe F had other problems besides his ability to communicate.

When it came time to apply for a primary school for F we were told that because his talking was so much better than it had been he would no longer qualify for funding for the specialist unit.  This meant that he would have to move to the local school.  In many ways this is better as it means that I can take him to school everyday; when he had to travel to school I felt as if I never really got to know his teacher or any of the mums of his classmates.  It was when C and I went for a meeting with his old teachers and the SENCO (special educational needs coordinator) from his new school that the possibility of his being autistic was first discussed.  His teachers thought that it was a possibility and his educational psychologist agreed to refer him for diagnosis.

Now that the referral was happening I did what I always did when hit with something I didn't really understand -  I went into research mode.  I hit the Internet and educated myself on exactly what autism is and its causes.  The National Autistic Society website was an invaluable tool, giving not only information about the condition itself but also reassuring us that contrary to what some still believe autism is not caused by the MMR.  I won't go into the ins and outs about it here, there's more than enough information out there about it, much explained in a better way than I could ever express.  In particular I recommend reading Ben Goodacre's book Bad Science which has lots of information about how the doctor involved in the original investigation of the MMR has been discredited.  I will say this on the subject though - before saying things like 'Oooooh, there must have been something to it' (a thing that has been said to me) or telling new parents to 'educate' themselves about vaccines - take a moment to think about what you are saying.  You are basically accusing parents of deliberately doing something to harm their child.  Take a moment and think about how devastating it would be for a parent trying to deal with the implications of being told they have a disabled child to be told that you are to blame for your childs' disability.  You wouldn't say that to someone who's child had a physical disability, so why say it to the parent of a child with autism?

I'm going to take a break here as I can feel myself getting upset about the subject and I'm beginning to rant.  Look out for part two in a couple of days.

Wednesday, 15 January 2014

New Year, New Habits

I realise that it's a bit late in the year for resolutions, being as we're now mid-way through January.  So I decided instead of making resolutions which for me are a bit too much like absolutes, I'm going to try and change a few of my habits.

1 - Eat healthier.

Like most women in their 30's I've tried a few diets over the years; Weightwatchers and the 5 2 diet have been for me the most successful.  The problem I've found with Weightwatchers is that to get access to their info you have to be prepared to pay a monthly fee which we're just not in the financial position to be able to do.  5 2 worked but I have to admit that after a couple of months I found it really boring; on fasting days I was eating the same thing again and again and I found that I was spending all day obsessing about found.  Not a good mental state to be on.  I know other people for whom it has worked wonders but in the end I decided that it just wasn't for me.

Part of the reason I think that I've always put the weight back after a while is because I like to snack way too much.  Also psychologically being on a diet wasn't doing me any good as it left me feeling incredibly guilty if I failed it.  So instead my first New Year habit is to eat healthier.  I'm using to help keep track of how much I'm eating but I'm trying to to get too obsessed about about; if I go over one day then it's not a big deal.

2 - Write everyday

For as long as I can remember I have enjoyed writing (well I was hardly likely to start something like this if I hated it!)  As a little girl I would fill notebook after notebook with random short stories and my degree is in English and Writing.  Unfortunately I'm incredibly easily distracted and unless I have a specific deadline for something I find it very hard to get motivated to do anything.  So my second habit is to write everyday.  Just a little at first, 20 minutes or so after I've dropped F off at school.  Over time I hope to get into the routine of writing more and more and who knows, eventually I might actually finish something I'm working on!

3 - Get the house in order

One thing that I hate more than anything else is tidying up.  It's boring, monotonous and never ending.  It is also unfortunately a necessary evil.  I recently found the website which recommends doing it in 20 minute stints.  I've been trying to do at least 3 a day and so far have been pretty successful.  Hopefully by doing this the house will slowly get to the place that I'd like it to be in.

4 - Be kinder to myself

For the last 6 years or so I've been suffering on and off with severe social anxiety and depression.  For me the two go hand in hand; my social anxiety leads me to dread any sort of contact with people, even those I've known for years.  This in turn leads to an increasing sense of isolation which leaves me depressed.

I've recently finished a course of cognitive behaviour therapy which was very helpful.  It taught me that I can cope with meeting new people, a thing that until recently would make me so anxious that I would feel physically sick at the thought of it.  It also taught me that I need to be nicer to myself; negative thoughts are re-enforced by repetition.  Likewise so are positive ones.  It won't be easy - after all I've got years of practice in being horrible to myself - but hopefully eventually I'll get to the place where I'll be able to say, 'You know, maybe I'm not sure a bad person after all.'

Thursday, 9 January 2014

An Introduction

Hi there, thanks for choosing to take the time to read this!

I guess the first thing I should do is introduce myself; I'm L, happily married to C for the past 3 and a half years and mum to a very lively 6 year old, F.  This is the third or fourth blog I've started over the years and abandoned after a couple of months but as a New Years resolution I told myself that I was going to start writing on a regular basis again and thought that a good place to start with that was with a blog.

Another reason to start the blog was that I think I'm driving C slightly nuts with my obsessional planning of our up coming trip to Disney World; we're not planning on going until October 2015 but are already saving hard.  We've been to Disneyland Paris four times in the last four years and were thinking of going again this year but decided that rather than spend our savings on a few days at Disneyland Paris we'd concentrate on saving for the holiday of a life time to Disney World.  Oh and Universal as well, one of the things that F is really looking forward to is visiting the Wizarding World of Harry Potter.

As well as talking about planning our trip I plan on sharing a few recipes, ideas on how to save money and anything else I fancy!