Asperger’s syndrome and mental health: A personal perspective – Autism in Practice – July 2014

lorraine1982:

I think this shows how important diagnosis can be. Good luck for the future :)

Originally posted on My Autistic Life:

As a freelance writer, I currently put features together for Autism in Practice, an e-newsletter developed by The National Autistic Society for professionals who work to support people with autism in Great Britain. In working on the July 2014 issue of Autism in Practice, I had the pleasure of meeting Callum McCrosson, a man with autism who has dealt with mental health issues along a journey that has resulted in him becoming employed by The National Autistic Society. His story inspired me as I live with depression and anxiety myself. Please read my feature on Callum’s story:

Callum McCrosson, 26, was diagnosed with Asperger’s syndrome when he was 23. He has also experienced life with a mental health issue as a teenager that left him isolated.

Ten years after he first experienced panic attacks that manifested as stomach cramps and muscular contractions, he developed a mental health issue…

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LITECUP – NIGHTLIGHT & NON-SPILL SIPPY CUP

 

 

 

 

 

If you’ve got a child that like to balance their drinks on the sofa, bed, etc then this cup is for you.  If you have a child that regularly drops their drinks, then this cup is also for you.  Jamie does both of these things, she also spills all down her front when drinking.  We have been using sports style bottles up until now, but unless the lid is closed and the bottle isn’t cross threaded it doesn’t quite do the job.

We decided we would try the Litecup.  We didn’t need the nightlight part as Jamie likes totally darkness when sleeping but you have a child who likes a night light then this is an added bonus as the light is very good.  You can however simply turn the light off with the push of a button.

Light onLight off

We bought our cup from Love Amber X and chose a purple one (you get a choice of 6 colours or a clear one) we chose purple as it’s Jamie’s calming colour.  It was £8 plus postage and was delivered very quickly.

At first Jamie refused to use the cup as she likes her bottles, but I explained that one day she is going to spill her bottles all over her, I Pad or Laptop and she agreed to try.  You basically suck any part of the outside of the lid and water comes out.  It is fab!!

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You can tip it upside down or any way you like and there will be no spills!!

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We often find Jamie’s bottles like this on the sofa or the bed and a big puddle of water too! This is great she can put it where she likes and we don’t have to worry.  I can fill it up and put it in my bag when out and about and it’s not going to leak.

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Can you see it lay behind her on the sofa? It is just wonderful.  The other bonus is that the light is quite calming so before bed she has the light on for a little while and it seems to be quite soothing.

We will definitely be ordering another one for her in another colour.

 

Presents

I am sorry it has been a while since I did a blog.

I was spurred on to do this after reading about a lady with twins who they called “the birthday grinch” who had put on the bottom of her girls birthday party invitations “no presents please your presence is enough”

My first thoughts were the difference between my children.  Jamie doesn’t really have a party more of a get together with a couple of girls and they are close and tend to find out what she would like for her birthday.  Joe however Xmas Birthday Boy had a party in the summer last year so that he could enjoy it and he ended up with £100+ in his cards at is party.

That made me realise that whenever we go to a party we also put £10 in the card and the amount of parties we attend it soon adds up, so for more than one child this can be an expensive game.  As parents we don’t have parties for our children so that they can get presents, we have them so that they can enjoy their birthday with their friends around them.

So I am seriously considering doing the same thing myself in the future, or something my kids have suggested is to ask for donations to charity rather than presents or money for them.

So I will ponder this, it’s 4 months until Jamie’s birthday and 6 until Joe’s, but I would be interested to know what other people think/do?

See below link to original story:

http://www.parentdish.co.uk/kids/the-birthday-grinch-no-presents-please/

Do we need to be social???

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I don’t know about you but I am always worried that Jamie isn’t social enough and when I say enough she is NOT social at all.

She doesn’t seek anything social and when she is in social situations she is does not have a clue.  She doesn’t understand social situations and she doesn’t understand how to be social.  But people are always banging on about how we need to “socialise” our kids. But why?

I for one only socialise as and when I want to with people that I want to, so why am I arranging play dates for my child with children who have completely different interests and lives? She doesn’t want friends, she doesn’t need friends and she doesn’t feel bad for not having friends.  She just wants to be left to get on with the things she enjoys in life, like Sims, Little Big Planet, Minecraft & Pokemon. 10 year old girls don’t have the same interests, or if they do it is very rare or they are usually also on the spectrum and probably also do not want to socalise!! 

So I arranged said Play Date with some lovely girls who Jamie used to go to school with.  They came to our house so that she was in familiar surroundings.  The first thing I noticed was that these girls talk!! Now Jamie is verbal but she doesn’t “chat”, they talk about music and TV and what they’ve been doing.  So straight away it is uncomfortable.  For around 20 minutes they happily played on the Wii U, but then that was enough.  Jamie stuck her headphones on and sat on the other sofa with her IPad.  When one of the girls asked if they could sit next to her and watch her reply was “no thank you”.  So I make lunch and put the Disney channel on for the girls while Jamie continues to eat and read on the IPad.  I can tell she is anxious.  She agrees to play dolls upstairs after lunch, but when I follow her up she is actually reading stats on Pokemon cards.  5 minutes later she’s lying on the sofa in meltdown.  I have an hour to kill now before the girls go home and i’m feeling sorry for them and Jamie.  They don’t really understand why she doesn’t want to play with her, she doesn’t understand why they want to play.  So Jamie goes on Little Big Planet to calm herself while the girls walk our dog round the estate.  They ask if they can go to the shop??? Jamie never goes outside on her own let alone off the street we live on and I actually don’t know what to say.  What do 10 year old girls do, what are boundaries, where do they go? So I say I will take them to the shop on the way home.

We make the 30 minute journey to where the girls live and Jamie has her headphones on the whole way.  I stop at the garage to fuel up and the girls jump out and go into the shop – another thing I have not experienced.  Jamie didn’t even noticed we had stopped for fuel she was so far in her own world.  We passed the place where Jamie rides so the girls were asking her questions, she simply replied “no thank you” and put her headphones back on.  The girls ask to go to McDonalds, again I am shocked, Jamie never asks for anything.  They are literally worlds apart.  So we drop her friends off and I have to take her headphones off so she can say goodbye. Then we make the 30 minute journey home in silence …

So what has she gained from this socially? 

How has this affected her anxiety?

Was it worth it?

Will I do it again?

Well i’m sat here now mentally exhausted, so I can’t even begin to imagine how Jamie is feeling.  It was lovely to see her friends again and I really wanted it to be a nice day where she would realise that it’s something she should do more often.  But did it make her happy?  

What makes her happy is being in her own world, obsessing about her own interests, and being calm and routine.

Ask her who her best friend is she will tell you her dog.  Her dog makes her happy :)

 

Teachers Strike

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To be completely honest the Teachers Strike does not affect me.  I work from home and home educate one child so having the other one home doesn’t really matter, in fact it is quite nice.  Unfortunately for him he doesn’t get away with a day off, i’m working with Jamie anyway so he might as well join in.  Today we did a science experiment about dissolving sugar cubes.  It was fun and it meant he didn’t completely miss a day of education.

However, for some people the strikes are difficult.  Short notice to take time off from work, using a days leave which you’d much rather stick in a 2 week block, or loosing a days pay.  Then there are the special needs kids, those who have a routine and don’t like change. Those who expected to be going to school this morning that ended up in meltdown because it is clearly Wednesday and they can’t comprehend that this isn’t school today.  There are people who have 1 child in school and 1 child not in school, I can imagine this is difficult too.

I am in full support of the teachers (good gosh my mother and mother in law are teachers – i’d be lynched if I wasn’t).  But seriously it is not because of that, I support them because happier teachers mean a better environment for my child to learn.  Lets face it, they deserve better pay and pensions.

But striking, i’m not so sure of.  Firstly if they do strike, it is a day of industrial action and I feel that the teachers should therefore be picketing.  I have seen many a status update today, and in the past of teachers being on strike and having a days shopping, a pamper day, etc etc.  Now I understand they don’t get paid for the day but our children are missing out on a days education and I want it to count.  Just this week I received a letter saying that my son’s attendance was being monitored.  Apparently locally some parents have been taken to court for their child’s attendance being less than 85%.  Now my sons attendance is 90.1% but I know last time it was 87%.  I have never ever taken him out of school unless he has been ill.  So the warning letter came and then the next day a letter saying that the school will be on strike.  Lets just say that got my back up.  The letter went on to explain that if a child misses the morning register they will be marked as unauthorised for the whole morning.  Well luckily this doesn’t happen often but having another child who is on the spectrum and prone to meltdowns at any given moment we have had issues where she has refused to come and take her brother to school.  What can you do? Leave her – NO, take him – NO, force her in the car and get beaten up in the process and be late for registration – YES.  But enough about that.

There are certain groups who I don’t believe should go on strike.  The Police for example are not allowed to strike and could you imagine if they did!! I don’t think the Fire Brigade should be able to strike.  I am ex-army and I was involved in the Fire Strikes personally, I trust those guys with my life and they can turn their hand to anything, but soldiers are not Fire Fighters and to put that pressure onto them is unfair (in my opinion).  Council Workers – I myself have worked for the Council (Adult Social Services to be precise) and I have been involved in a potential strike.  Luckily that Strike didn’t go ahead because all I could think the elderly and disabled would be trying to contact us and who would be there to help? So Doctors, Nurses, Paramedics, Teachers, any front line service I believe should not strike.  But unfortunately I don’t know what they are supposed to do to get the discussions and the results they want :(

I have seen a lot of status’s today about, shall we fine the school £60 because they have gone on strike, it is unfair that we can’t take our kids out of school but they can close the school … It isn’t the school that fine you for taking your kids out of school, this goes beyond schools, they have no choice.  I know many teachers and they would agree that sometimes a holiday (at certain times of year) can be as good and as educational as being in school.  Especially towards the end of the school year.

 

Maybe if we did something we could help the teachers so that next time they don’t have to strike? Any teachers out there have any ideas?

Home Visit from the LEA

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We had our first home visit from the LEA last week, and I know there will be backlash from what I write because I have had people desperately trying to get me to avoid all contact with the LEA before and I know there will be people who totally disagree with everything I say.  That is your choice and I respect that, so please respect my choice.

So I agreed to have the LEA come to my home and see what we do with Jamie.  I didn’t want to fill out a form stating how we educate her as it’s not that simple.  Anyone who home educates a child on the spectrum knows you can’t simply complete a form that fulfills everything that the child needs to be doing.  Autistic children (along with lots of non autistic children) simply do not learn like that!! So I thought a face to face, see what we do and chat would be the best way forward.  

I am not stupid, I know it is a paper exercise for them, but I wanted their views on what I was doing and I wanted to discuss the future. So it was a win win situation.

We were visited on Thursday by the General Adviser for Home Education and the Statementing Officer, who were both lovely gentlemen.  Firstly they saw Jamie in her home environment, with her migraine and witnessed her being sick all over our new Sofa!!

They explained everything to us, asked informative questions, gave advise, gave us praise.  They commented on how well Jamie was doing and how well the environment suited her.  She is just so happy and anyone can see that.  That is why NO ONE is going to send her back to school where she can’t cope.  At home she is at the same level as any other child her age, if not above.  There are areas to work on like with any child.  She struggles with writing, so we need to make more effort getting her typing on the computer and she needs to get outside a little more often.  

We talked about the future and secondary education and it seems we all have the same concerns: will she go backwards, will it be too big, will she get lost, will it be too noisy, will she get stressed and lash out and therefore be excluded, will she be UNHAPPY :(

We went through her statement (which will be amended) and we were told that previous info we were given is wrong (we were told if she left a resourced placement for mainstream she would loose her statement) it turned out to be quite the opposite, they said that if Jamie did go to mainstream she would have a substantial package in place to help her! I’m not stupid, this may not happened as I know people do talk a good talk.  We can teach her ourselves like we are doing now, we could also get a tutor in for the core subjects. It is good to start having a plan, something I wouldn’t have thought about without this visit.

So all in all this visit was helpful to us as a family and Jamie enjoyed it, which is a bonus!! 

People avoid home visits for all sorts of reasons and each county is different and I know others will not have the same experience as me, but one thing that echo’s in my mind when I asked why so many people are anti LEA was this – People Home Educate for 3 main reasons:

1. Life style choice

2. Special Needs better met in home environment

3. People that have something to hide

You do not by law have to be visited by the LEA, I think the people who avoid these visits quite probably have had a bad experience with the education authority in the past.  This will not be the case for everyone and certainly wasn’t for us.

On another note they were shocked that the mainstream school Jamie attended first were so bad with her as the school is the most inclusive in our area and best equipped – apparently.

 

Scared S***less of XBox Live!!!

This week my blog has nothing to do with Autism but every parents fear … The Internet!!

I know I have a good boy, I have witnessed it many times.  A good example is when he had friends over and they were swearing in his room and he refused because he knew it was wrong (I was listening outside the door).  Listening outside the door has become a daily thing for me :( I am petrified of XBox Live and the Internet!

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This is me hiding outside my 8 year old sons bedroom door.  I do this regularly not because I think he is up to anything but because I don’t trust the some of the people he is playing online with.  Most of his friends we know but there is the odd one who are friends of friends or he met through gaming.  I often hear him telling someone “I can’t tell you where In live”, “I can’t tell you that” etc etc, and I check – and yes these are kids generally asking where he lives but it scares me.  Tonight someone was calling him a fat gay, his reply was “stop calling me G.A.Y” poor fella even spelled it out.  

This week I read a story of a boy who met someone online who controlled him and killed him http://www.standard.co.uk/news/crime/familys-tribute-to-breck-bednar-an-intelligent-and-thoughtful-boy-stabbed-to-death-by-internet-friend-9141054.html 

That poor boy met someone who he thought was his friend and he could trust enough to lie to his mother and sneak out to meet.  

I like to think that my kids can talk to me and I can listen to them, but who knows what is going on inside their headsets?

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So engrossed he didn’t even notice that I took this picture (sitting outside his room is pretty easy to get away with).  I would love to remove XBox Live, I would love to limit his friends, I would love to limit his games, but I’m not sure that would help anyway.  He doesn’t want to be the one who isn’t “allowed” and I don’t want him to be the one who isn’t “allowed” I was that kid and it’s not nice.  I want to trust him and I want him to trust me.  But gosh it is so scary.  He regularly asks when he walk to school alone, go to the shop alone …

I don’t know if i’m worse at this because my first born is Autistic and has never asked any of these questions and the only online game she plays is Autcraft which I know I can trust.  She talks to literally no one outside this house.  How we would love her to interact more but also it’s nice to know she’s protected.

So what now? Well for me i’m back off upstairs to listen in on his online gaming and then at 9pm when he comes off I will ask him questions about what I have heard (he really thinks I have eyes in the back of my head – something I want to keep going for a few more years yet!!)