Monday, 17 May 2010

Autism basic facts

Hi, have been meaning to blog for a while but mega busy due to a big girl's birthday this month! Have one blog in mind for future days ('Rice Krispies and water' - bet you're intrigued now ;) ) but for now I'd just like to post some 'top facts' about autism which another mum I've met recently sent to me as a good starting point to try and raise awareness.

Parents of children with autism quickly discover the top autism facts. But what about in-laws, teachers, friends, cousins etc? Few people outside the immediate family really want to read pages and pages of in depth information. Here I have tried to present some basics for a quick read. These are not all my own words but words I have picked from many different places but I believe they are words that help raise awareness. Please feel free to add to it, send it on to as many people as possible, change it etc. Thank you!!

What do these people have in common?

Thomas Edison, Albert Einstein, Michael Jackson, Woody Allen, Mozart, Bethoven, Gary Numan, Dan Akroyd, George Orwell, Bill Gates, Michael Palin, Alfred Hitchcock, Isaac Newton, Jane Austin, Hans Christian Anderson, Charles Darwin, Thomas Jefferson and Michelangelo di Lodovico.

They are all believed to be or have been (as some are dead) on the Autistic Spectrum.

Autism Is a 'Spectrum' Disorder

People with autism can be a little autistic or very autistic. Thus, it is possible to be bright, verbal and autistic as well as locked in their own world, non-verbal and autistic. The most significant shared symptom is difficulty with social communication (eye contact, conversation, taking another's perspective, etc.).

Asperger Syndrome is a High Functioning Form of Autism

Asperger Syndrome (AS) is considered to be a part of the autism spectrum. The only significant difference between AS and High Functioning Autism is that people with AS usually develop speech right on time while people with autism usually have speech delays. People with AS are generally very bright and verbal, but have significant social deficits (which is why AS has earned the nickname "Geek Syndrome").

People With Autism Are Different from One Another

If you've seen Rainman or a TV show about autism, you may think you know what autism "looks like." In fact, when you've met one person with autism you've met ONE person with autism. Some people with autism are chatty; others are silent. Many have sensory issues, gastrointestinal problems, sleep difficulties and other medical problems. Others may have social-communication delays - and that's it.

There Are Dozens of Treatments for Autism - But No 'Cure'
There Are Many Theories on the Cause of Autism, But No Consensus.
At present, most researchers think autism is caused by a combination of genetic and environmental factors - and it's quite possible that different people's symptoms have different causes.

People Don't Grow Out of Autism

Autism is a lifelong diagnosis. For some people, often (but not always) those who receive intensive early intervention, symptoms may decrease radically. People with autism can also learn coping skills to help them manage their difficulties and even build on their unique strengths. But people with autism will be autistic throughout their lives.

Families Coping with Autism Need Help and Support

Even "high functioning" autism is challenging for parents. "Low functioning" autism can be overwhelming to the entire family. Families may be under a great deal of stress, and they need all the non-judgemental help they can get from friends, extended family, and service providers. Respite care (someone else taking care of the person with autism while other family members take a break) can be a marriage and/or family-saver!

There Are Many Unfounded Myths About Autism

The media is full of stories about autism, and many of those stories are less than accurate. For example, you may have heard that people with autism are cold and unfeeling, or that people with autism never marry or hold productive jobs. Since every person with autism is different, however, such "always" and "never" statements simply don't hold water. To understand a person with autism, it's a good idea to spend some time getting to know him or her - personally!  

Autistic People Have Many Strengths and Abilities

It may seem that autism is a wholly negative diagnosis. But almost everyone on the autism spectrum has a great to deal to offer the world. People with autism are among the most forthright, non-judgemental, passionate people you'll ever meet. They are also ideal candidates for many types of careers.

Autism has nothing whatsoever to do with the way parents bring up their children

Children and adults on the autistic spectrum are funny, quirky, frustrating and unique. With 1 in 110 children now being diagnosed there is an excellent chance we will all be touched personally by autism in our lifetimes. Hopefully with raised awareness of this issue we will have more understanding of people with autism as well as the effect it has on a family. I would like to think that when people witness a child having a meltdown in public they will be compassionate rather than judgemental.

Sasha is still very young and has a lot of developing to do of course like any child of her age, so we have no idea what her characteristics are going to be. At the moment we can say she is loving and lovable, doesn’t really seem to have an issue with affection or eye contact for example, but does struggle to focus on activities or take direction from others (i.e. she likes to do just what she wants to do – like many toddlers!). She has delayed speech and limited understanding of some concepts, such as time, but is intelligent – she could count to 10 in both English and Spanish at a very young age, and knows when she is asking for chocolate when she shouldn’t be! That’s just a snapshot of course :)
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Thursday, 6 May 2010

Well just a quick post tonight as I need to research trampolines :) am v excited that we have decided to buy one, as I know how much Sasha is going to enjoy it particularly - but also Tamsin (and maybe even Mummy, always looking for new ways to keep fit ;) ).

Am feeling fairly positive again at the mo, although it'd be fair to say that Sasha's behaviour has seemed to get slightly more challenging lately... not only during the day, but at bedtime too. She used to be an angel at going to bed before, but now it takes much longer to settle her (and if I'm in it's generally me she wants of course!). My moods have really been up and down badly lately, and it's difficult even for me to understand why - poor old Chris!

Took her to Willows Farm this week to meet up with a couple of other mums I've recently met with slightly older autistic children (so they took their younger ones along), and it was lovely to be with them and feel that they understood. Not that I got to spend much time with them - Sasha rushes from one thing to the next and can't be persuaded to stay in one place very easily! Fortunately it was quite so she had a great time on the bouncy castle and trampolines with no queue. When we're in the indoors play centre though, I always have to keep my eye out for the 'sock police' - they are very hot on making children wear socks, which is extremely difficult for me as Sasha hasn't worn them for months! So I try and make an effort and show that I'm trying, but I really don't want to have to carry her away from the slide screaming just coz she's not got socks on. I feel like asking them to try and do it, but don't expect I'd get much sympathy or understanding! Sasha also loves the soft play area for under 2s, and as she is now nearly 3 I stand there keeping my fingers crossed that we are not caught by the 'age police'! She doesn't cause any issues, but of course she's fairly tall for her age so someone is bound to say something one time. I think now it is becoming more apparent that her speech is behind, which in a strange way is a relief as it is something to 'show' people who might not otherwise understand. On the other hand I want her to be able to speak better now so very much - she still hasn't told me she loves me, and maybe never will, who knows?

Tomorrow at last I meet with the lady from the Autism Advisory Service for the first time - remember, Sasha's diagnosis was back on 26th February for us, so this is over 2 months later!  So I'm intrigued as to what help she will be.... I've heard she's very knowledgeable, and that the nursery nurse will visit us regularly once assigned, so we'll see. Since I missed the call from the lady from Parent Partnership I've tried calling back and leaving messages several times, but nothing since. Hmmm. I'll steal the words of another mum with a diagnosis here, as I thought they were very good and fitting.... 'that whack around the back of the head with a cricket bat that is called a diagnosis, and the recognition as you're coming round from that, that there is help out there, but you have to access it all yourself - no-one can pick it off a shelf and give it to you'.

Also met another 'new' mum recently who has a boy with autism who started primary school this year. The school has been particularly useless in understanding him, sh feels, and so she's now got a statement and will be sending him to a specialist school, one that she's not even seen yet but is sure will be better than the mainstream one. The scary thing is he sounds a lot like Sasha is when he was her age..... Ah, I'll be having a lot of research on schools to do later this year, and will definitely be applying for that all-elusive Statement.

Right must go! x
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Saturday, 1 May 2010

Behaviour record

OK so today I have decided to blog mainly to remind me of a couple of examples of Sasha's recent behaviour...

Yesterday I had a (very nice) lady from the Money Advice Unit round to help me complete the DLA (Disability Living Allowance) forms. If we are successful in the application, this should at least help us with some private speech therapy (although unlikely to help us with the ABA ideal, as per my last blog!!). Everyone I've met recently on the autism 'network' has warned me that these forms are difficult to fill in, and I should have a box of tissues ready, as you really do have to look at all the negatives about Sasha and not write down any of the positives. Well I didn't end up in tears, but it was mentally tough as of course there is so much positive I want to tell everyone about Sasha. I guess it's another small step on the way to really accepting how she is and how different the life journey will now be for us all compared to the one we had imagined - although of course, there's no way of knowing what path that will take.

So that went OK, but the evening fell apart slightly after I collected Sasha from nursery. She was actually in a great mood, and wanted to go out in our garden, even though it was drizzly. She put her wellies and coat on and collected her umbrella, then ran up and down the newly laid (by Daddy, well done) patio, jumping up and down and splashing in the muddy puddles (or muddles as she sometimes calls them!). I actually took some home video of her doing this, as she was having such a great time, but then as I moved away from watching her at the back door to go check on Tamsin, that didn't meet with her approval and so she decided to start crying about it. Which turned into a full blown tantrum when I didn't go to get her. She first of all knelt down on the wet grass, and then sat on it, getting wetter by the second, while I sat in the lounge and waited to see if she would calm down. It was about 5 mins later (I know, doesn't sound that long, but it was raining!) when Tamsin started laughing because, as she told me, 'Sasha's being silly and has taken her wellies off now'(no socks on of course), that I knew I'd have to go and get her. Of course as soon as we were inside and I removed her soaking wet trousers she recovered very quickly, but I was left wishing I'd taken video of that too, as an example of her unreasonable behaviour.

Then this morning started off with her in a great mood again (although me not so happy after having to get out of bed at 610). Everything went swimmingly until I suggested the playground, and she was very excited with that idea and wanted to go instantly. Fortunately Daddy and sister were also just about ready, so that was good. All set then, til Daddy brought the 2 scooters round for the girls to go on (it's a 2 minute walk round the corner, bliss!). Then for an inexplicable reason, Sasha started crying and refused to go, and nothing would change her mind. We're still not really sure why - could have been the scooter, which she does love, but maybe was just surprised by, or didn't fancy. Or could have been Daddy offering her the wrong coat. We really don't know, and that's part of what is so difficult. She then just wanted to sit cuddling me while daddy went off with sister to the park, and it took her a while to come back round to being happy. I spoke to another mum of an autistic girl at a coffee morning recently who pointed out that the weather being nice unexpectedly was not generally a good thing, as autistic children like to have everything planned and know in advance what is going to happen, so spontaneity goes out of the window. That definitely can be the case, but on the other hand Sasha seems to have inherited my 'impatient' gene but in a magnified way - which means if you suggest going to the playground or swimming with her, you had better be ready to walk out of the door with her as soon as you say it, or the moment and mood can be lost so easily. There is never any point in waking up and saying 'let's go to the park later' - later is a concept just not understood by Sasha.

So anyhow we did make it out to the playground this afternoon (with me not being particularly prepared for her request so looking like a right scruff!) and had a lovely time. On the way back though Sasha did stop walking suddenly (which she does like to do occasionallly, to make me go ahead for a bit, or to shout 'Stop... carry on!' for a giggle) and she crouched down on the pavement with her hands over her ears as if a noise was really bothering her. There was a lawnmower on and it may have been that, but I'm not really sure, I just know it unsettled her slightly whatever it was. She recovered Ok though, it didn't last too long. Had to deal with Tamsin's huge floods of tears at the same time because she cannot ride a bike easily... don't think she really appreciates yet that you have to put the effort in, bless! She just complains that her legs are always tired when she tries :) quite funny really, but not when you're trying to calm her down coz she's almost hysterical! General tiredness hits her badly unfortunately.

Anyhow both girls now sound asleep so off to bed I go too!
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