Diagnosing autism - services need to be increased, not reduced.

If you are a regular reader of my blog you probably know that my two boys both have a diagnosis of high functioning autism, sometimes called Asperger Syndrome. 

My boys are very different, both have different needs but thanks to some great support they are on their way to fulfilling their dreams.

It was not always like this.  Our journey to diagnosis for the boys was long, convoluted and costly.  In many ways it was so much easier with Daisy, her disability was so extreme and obvious the support clicked into place immediately.

It’s different with the so called “invisible disabilities” however.  The lifelong neurodevelopmental disorders that fall within the autism spectrum are difficult to spot and children can fall between the cracks in our broken system without the support they need.

The EHCP Process: An exercise in jumping through hoops?

Securing an Education, Health & Social Care Plan to support your child's special education needs feels at times like being forced to jump through hoops, over and over. Having been through this process recently I thought I should share our story, and my tips for getting through the process without getting burned.

I wrote last year about our youngest son and his diagnosis of autism spectrum disorder.  You would think, being the parents of a child with learning disabilities (and a syndrome associated with autism) as well as a highly intelligent eldest child with aspergers/high functioning autism, that we could have spotted it a mile off.  But the reality is, just as I tell the professionals, every child is different, every child presents differently.

So Jules has an official diagnosis of Asperger Syndrome (now commonly known as high functioning autism).  His issues are very much around anxiety and he has speech and language and executive functioning difficulties which in a nutshell have meant that transition to a huge London high school from a small suburban primary was overwhelming for him.

When you child's playstation habit makes you burst with pride

I really, really did not imagine I would ever write a post with the title "when your child's playstation habit makes you burst with pride", but a couple of weeks ago that is what happened.

You see I have this love/hate relationship with games consoles - the neurotypical (read non-aspie) parent in me who believes in healthy exercise, being outside, riding bikes, kicking footballs, throwing rugby balls and hours spent in a swimming pool, hates games consoles, they are a modern day evil turning our children into dribbling, square-eyed, monsters...

However, the other parent in me, the one who is trying to understand how her children tick, who is aware of the one who is differently wired, who is desperately not trying to turn in to her parents  (anyone remember the comments their parents made about your favourite bands during Top of the Pops?)........

Aspie Christmas Everyone!

I love Christmas.  I love the preparation, the carols & cheesy songs, the parties, the socialising, the decorations - in fact I guess I'm a bit like Buddy from the film Elf when it comes to Christmas.

Parental Guidance Required

I have four children, their current ages are 16, 14, 11 and 8.  In the eyes of the law however my eldest child is in a grey zone, hovering between adolescence and adulthood.  You see I have recently discovered that the years between 16 to 18 mean different things depending on what you are looking at.

When Theo turned 16 he proudly reeled off the list of all the things he could now do:-

Ride a moped, buy a lottery ticket, drink alcohol if it is with a meal, fly a glider...

That was the interesting stuff.

But what about the other stuff?   The stuff we really didn't think about until it started to impact his life.

Getting it into perspective

We seem to live in a time of competitive parenting, and nowhere more so than London.  It's all about getting your child into the right school, playing the right sport, attending the right clubs, having the best parties, what grades they get, what they are learning...it can drive you crazy and make you feel insecure. Sometimes those insecurities then leak into other areas of my life - I blog for me and the people like me, so why do I feel the need every now and then to engage with the (insert your own adjective here) community of Mummy Bloggers, it only makes me feel inferior that I am not listed in the Tots100 blogs, or ranked as one of the best Special Needs blogs, or that I just don't have the time to sit for hours on end tweaking the look and feel of my blog.  Really all these pressures make me forget my number one rule, focus on what you have, not what you don't have.

What I told the Minister (& what I would have told him if I had more time!)

So what do you get when you put 11 very opinionated, passionate, at the end of their tether Mothers of children with Special Needs Children in a room with the Minister for children?  A meeting that almost became a group therapy session that could have run all day if the very harassed clock watching aides would have allowed it.

I'm third from the left in the black dress

I met with Edward Timpson, MP - officially known as the Parliamentary Undersecretary of State (Children & Families) earlier this week as part of a delegation of Bloggers with an interest in SEN invited by the Tots100 bloggers forum.  We were specifically invited to discuss our experiences of the Special Education Needs system - each of us bore our individual battle scars from our dealings with the system and over and over the same themes came up, and in a way it was good to know that I was not alone in my battle to ensure that ALL my children achieved their potential, regardless of their ability or disability, age or gender.

Life in the SEN Pinball Machine

Just blowing the dust and cobwebs off the blog before I begin..... not only has my trusty laptop failed me and just like in the early months of this blog I am reduced to borrowing my son's computer, I am also just about emerging battered and bruised from what can only be described a rocky start to 2013.

Life is never going to be easy parenting four children, especially when two of them require additional attention but when you are also battling the system to get your children the support and help you need then reserves run dry very quickly.

The Waiting Game....

We know the waiting game well, we parents of children with additional or medical needs.  Waiting for results, waiting for appointments, waiting for confirmation, waiting for the post, waiting to see if the treatment is working, our lives are a waiting game interspersed with rushes of adrenaline when the waiting stops momentarily and before we have to move onto the next thing we are waiting for.  But the waiting never stops, there's always something that could help, that may make a difference, that will provide some support - it's part of the special parent job description "must get used to waiting".

Back to school blues...

I took a little blog holiday over the summer as you can tell, mainly because having all four children at home means there are less hours in the day to indulge myself in writing than normal.  Well the children have been back to school for a week now and I have taken up my usual Sunday evening position at the kitchen table, clean school uniform waiting to be taken upstairs and homework (allegedly) finished.

I think I have the back to school blues though, despite the little bit of daytime respite having the children in school gives me.  Back to school means back to meetings, appointments, form filling and in a couple of weeks another hospital admission for Daisy.  Back to school means back to the reality of my life, reality which was temporarily suspended over our glorious summer break.

Faster, Higher, Stronger.....

When Daisy was nearly 7 months old she had a gastrostomy tube inserted as an emergency case.  It was an emergency because at the time we were relying on a nasal-gastric tube to feed her and her vomiting and excess secretions meant that it would come out several times a day and she was losing weight and dropping her blood sugars constantly as a result - as we now know the weight loss was going to happen regardless as her gut became unfeedable but at the time we had to try every option.

Gastrostomy insertions are often done as a day case or overnight but at that point in her life Daisy was needing intensive care after every anaesthetic so she had 24 hours in ICU plus a couple of days on a surgical ward before she was well enough to come home.

That week in July was a big one in the UK and Daisy and I were able to witness it all , while the rest of the family were at work and school.  On the 6th July we turned on the TV for the live announcement of the decision on who was to host the Olympics in 2012 - I had been following the progress of the bid keenly and was over the moon when the announcement was made, hugging Daisy, not really thinking about what the next 7 years would bring.

Spontaneous Planning

We are at the end of another half term and have made it through in one piece.  I am so grateful for every school holiday we get to spend together because we have lost so much family time over the years. This time of normality has also shown us how different our lives in the real world are as we try to function as a family, this week provided many examples and made me realise that what I am constantly trying to do is spontaneously plan in order to do the normal childhood stuff other families take for granted.

It can't have escaped anyone's attention that there is a lot going on in my home town of London at the moment - all this week we have had the Diamond Jubilee Celebrations then in a few weeks time the Olympics start.

How I got my groove back

In a couple of weeks I will be 44

Yes - hard to believe isn't it!!!  I don't know what I imagined my life to be like at 44 but there are a lot of things I did not expect it to be like. While I knew I would proably have more than the average number of children, I did not expect to have two with additional needs.  I expected to start slowing down, not speeding up, I did not expect to be still changing nappies or carrying children around or making up milk feeds, I certainly did not expect to be performing the sort of medical procedures that I do day in day out, or needing the mental agility required to defuse an autistic meltdown before it becomes full strength, I expected to be working part time and reducing my hours, not working all the hours god sends for no money, I definitely expected to have slightly more disposable income ....

This be the Verse....

I remember being about 8 months pregnant with Xanthe , Theo had just turned two, I was wracked with guilt about bringing another child into the mix and turning his world upside down.   How could I share my love for him with another? Would things ever be the same

...these feelings of guilt are what many mothers feel when they think about or go on to have a sibling for their first child, it's that fear that we are not doing the right thing by our child, that they only get one shot at a childhood and our actions or inactions would ruin it for them...

It was a similar feeling in 2004 when we were told at our 10 week scan that we had a 1 in 4 chance of having a  child with Downs.  My first reaction was that we had ruined the children's lives, that things would never be the same, that the dreams and hopes and plans I had for my family were all shattered...

A letter to my son.....

A couple of weeks ago, someone somewhere googled “I Wish I Didn’t Have Aspergers”. The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad. She wished she could have answered.


The result has been an autism positivity flashblog, going out today, 30th April, where bloggers who write about autism and aspergers write a post which hopefully anyone googling "I Wish I Didn't Have Aspergers" would find support and encouragement from a whole community of people who understand, or are trying to understand...

"I wish I didn't have aspergers" is something I guess my son has said,or thought, or googled at some time so I thought I would write the letter that I would want him to see if he felt so low that he had to type in those words to see what came up...

Dear Theo

I remember when you were born, our first child, our boy, our son. We were filled with hopes and dreams for you, Daddy wanted you to be an Arsenal Striker, Fighter Pilot and Doctor all rolled into one (it's OK, he wasn't serious, well maybe not about the fighter pilot bit...). But what we wanted most for you was to be yourself.

Why do I do it?

So why do I write this blog and bare my soul to thousands of strangers week in week out?

I was pondering this following a recent thread on the Mumsnet Site and have found myself looking back over some of my old posts over the past week or so. It's only really in the past 6 months or so that I have actually "come out" as a blogger within the blogging community, although the reality is I have been writing for years.  I wrote my first  post on the 1st January 2007 for an earlier blog I had started but my serious, regular blogging began late in 2008 when our lives reached another turning point with Daisy.

Prior to that time, Daisy's life was following a "typical" Costello Syndrome course - lots of hospital stays and already she had undergone several surgeries, but my old blog was already documenting our worries about Daisy's gastrointestinal issue and the lack of either improvement or stability which is normally seen in the syndrome.  Similarly, Theo, our oldest son,  was on the gifted and talented programme in his junior school and we smiled at his quirks and obsessions putting them all down to the fact that he was so bright and his anxieties we blamed on being the eldest of four.  We had no inkling of what was to come.  A pivotal point in our life with Daisy, which was already complicated came in September 2008 when she was rushed into hospital with yet another infection and then soon after transferred to Great Ormond Street hospital where she started Total Parenteral Nutrition, the system of delivering nutrients directly into the bloodstream when the gastrointestinal system becomes unfeedable.  It was at this point I began to blog in earnest, here is the the first post I ever wrote for Was this in the Plan? My first blog post

Mixed Emotions

Well we are back from holiday and survived intact - just.  Daisy as always continues to amaze us with her resilience, courage and positive outlook against all the odds.  She loved being on holiday, she loved the ferry and our little cabin, she loved the apartment, the beach, the places we visited, just being with her family but most of all she loved sleeping in a little bed next to her Mummy & Daddy - that was the most exciting thing for her, to be able to reach over in the middle of the night, tweak the duvet and tell me that she is Peppa Pig on holiday!!!

We are so proud of how Daisy adapts to new situations and takes it all in her stride.  Of course it was hard work; broken nights, juggling meds and IVs and TPN with family plans, but we survived and we can't wait to do it all again, sadly however, we have agreed that this is our last holiday as a family.

For a boy with Aspergers, who has sensory issues and craves routine, darkened rooms and familiar surroundings, smells, tastes and objects, a holiday in France with a boisterous family was maybe not such a good idea.  Theo had recently started on regular medication to help with his chronic migraines and to cap it all he had a bad reaction to the tablets which exacerbated his asperger traits meaning that his sleep patterns were all out of kilter and his anxiety levels were heightened resulting in several high octane meltdowns.  Not good in the confines of a small apartment!

A Military Operation

We are going on holiday, a real family holiday.  This will be the first holiday in a long time.  We have been very fortunate to have two holidays in the last few years but both of these were through two amazing charities Caudwell Children and Torbay Holiday Helpers Network.  These were supported holidays with organised trips, support and back up, we didn't have to do too much thinking or planning and there was the constant reassurance that there were people around to help us if things went pear shaped.  This holiday is a normal, family, self-catering, travelling by ferry, week in France - eeeeekkkk!

We love France, we love the beach, we need to get away, so a few months ago we started working on how we could manage a family trip across the channel.  The first thing was insurance.  OK so it's France, it's hardly the other side of the world, and theoretically our European Health Insurance Card would cover any medical treatment Daisy or the rest of the family would need.  Yes - theoretically, until you start thinking about scenarios...so, what if we have booked our ferries and are unable to travel because Daisy is unwell, we cannot afford to lose several hundred pounds.  What if she has a line infection or septic episode while we are away, well yes she could receive treatment in a French hospital but if she needed a new line then she is tricky to anaesthetise, she has had numerous line insertions and can only really have new lines fitted by the Interventional Radiology Consultant at Great Ormond Street..what if, what if..... When we started going through the scenarios, good travel insurance is essential.  While we do as much as possible to minimise the risk, there are so many elements to Daisy's health that are out of our hands.

A different operating system

The quote above appeared on facebook a few weeks ago and for me it was a eureka moment, it encapsulated what life is like for a person with Autistic Spectrum Disorder, a person like my son, Theo.  In a moment I realised  what I had been struggling to articulate, that Theo is a Mac and the rest of us are PCs and we are trying to operate a Mac like you operate a PC....and if you are not familiar with these two operating systems it's like trying to manually change gear in an automatic car or speak French in Germany...you get my drift.  In other words the normal (what we perceive to be normal) rules do not apply.  When you have a child with Aspergers, many of the normal rules of parenting don't apply and you have to revisit how to parent in a way that can sometimes completely go against your instinct......