Tag Archives: treatment

Addictions & Aspergers

1 Jun

Little man didn’t go to school last week hardly at all! He has a toothache which is probably down to the fizzy drinks he drinks. The thing is Aspergers Syndrome and toothache doesn’t always result in a trip to the dentist. Yep, his refusing, despite the pain his in. His made it pretty clear he isn’t stepping foot in the dentist and I’m losing the will to live as a result!

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Firstly, it isn’t like I can just drag his backside there kicking and screaming! Why not? Because little mans kicking and screaming involves hitting, swearing and screaming so loud that in the past passers by have called the police thinking I’m some kind of child abductor. Believe me, this situation isn’t easy!

Shockingly, in between the tears of pain little man made a request… “Can I have a can off Coke please mum?”… Shocking… I know! I’m really having difficulty getting him to associate the cause of the pain with that of the fizzy pop. He waited till i was out of sight and went straight for the fridge. Lets just say that he finally realised that the fizz and the pain go hand in hand!

Yes, the fizzy drink as predicted, set of his toothache and did so in style. Little man rocked and cried as he experienced such intense discomfort. I tried to once again explain that this was a direct result of drinking fizzy drinks due to there high sugar content. I guess I expected some kind of big reaction, maybe a promise that he’ll never go near the stuff again! Shockingly little man made the suggestion of using a straw in the future instead.

The thing is, when younger, little man loved the dentist. He had a filling when he was around 6 years old! Myself and the dentist were sure he’d freak out and were all geared up ready for the explosion! Well, you can just imagine how shocked we both were when discovering he actually enjoyed the sensations of the drill during a small filling (mainly the vibrations he felt within his numb mouth).

He tells me he doesn’t remember this, which seems odd as he remembers almost everything (past events). He has no reasons to block such memories out.

I myself have a real dentist phobia and as a result, I’m registered under a clinic especially for those diagnosed with such fears. Note, that despite the amount of drugs they pumped in me, ones designed to relax me in order to receive the treatment I so badly needed, I still went ballistic and as a result, not one wisdom tooth was remove and not one filling applied… I left with worse toothache than when I had arrived! It is said that I had to be carried out from the treatment room as I was throwing punches at both the dentist and his assistant. I don’t remember becoming violent… I’m not that kind of person! This was down to the cocktail of drugs pumped into me for sure. I’ve now been told that the only way forward for me is to be put to sleep during treatment and I don’t want this to have to be the case for my 12 year old son. Its important that I point out that despite this somewhat intense fear, I’ve never displayed it in the presence of any of my children. If mums scared shitless then its simply a job for daddy! Oh Yes… I just ensure its him who makes the dentist trips. Though this brings me to my second reason on why dragging him kicking and screaming wont work! Dad isn’t used to public meltdowns, the type displayed by our little man. When outside, whenever such meltdowns have surfaced he’ll just run off the other way having been highly embarrassed by the situation! Sometimes I wish I had such an option as running! Sadly I don’t!

You see… In life some of the most “normal” everyday tasks that are usually completed with ease, are often more trying for those on the spectrum. I personally think, that those who don’t get to witness such struggles first hand, will never truly “get” it! I mean, I’ve been given some awful advice at times! Popular ones being… “Don’t take no for an answer… You’re the adult not him!” or another… “His being over the top and throwing a tantrum in the hope you’ll give up and give in!!” … Come on People, do you not think I haven’t already thought such “possibilities” over in my head? I’ve stood my ground and not taken no for an answer (and often still will) however, its all down to the situation at hand and how difficult little man is coping with the task or activity… Something’s are easier said than done and although their are times when his just plain not behaving, there are also situations such as the one we are in, where little man has little control over it! Trust me I’m his mother… I know!

Well, we have since had half term (which is a few days from ending) and little man still has an on/off toothache but still refuses to let a dentist work their magic. I’ve done my upmost best to keep any fizzy pop locked up and haven’t given him spends for the shop as I just know what he’ll buy. Sadly, I read an article in the paper just this week, about that of a young man age 30 who was diagnosed as having Aspergers Syndrome, was addicted to Coke (not the drug but the type supplied in a can and found usually in a refrigerator). Sadly this addiction took his life, it actually killed him. It was reported that the young man drunk an excessive amount of coke on a daily basis which has been reported to be behaviour motivated by his Aspergers. The young man had been drinking Coke -Cola since the age of 10 and his mother commented that it was as if her son had a self distract button (read report Here).

Its sad to think that the thing he loved was to be his killer! The 30 year old was reported to have died in his sleep and the cause of death recorded as excess liquid consumption.

Of course the above story scares the crap out of me! I just wish it would do the same for little man! So far no luck! Its dead frustrating and some days I just feel like I need to take ahold of him and shake the sense into him. Somehow maybe then the importance of what I’ve just told him would actually take some positive effect. Right now he just can’t relate his own actions with that of the young man who unfortunately lost his life at the hands of a Coke can.

Its my experience as a mother to a child diagnosed as having Aspergers Syndrome, that children on the autism spectrum seem to have rather addictive personalities! Of course not everyone! But for little man, I think this may well be the case! He so easily attaches himself to something in which he loves and like many diagnosed with Asperger’s syndrome, he will then over indulge. Both interests and habits almost always become obsessional and then indulged to an excessive level.

Well, its teacher training day this coming Monday so little man’s return will be on the Tuesday. He really needs to go in as the continued time off will just land me in trouble with the school/LEA. I could even be taken to court due to the lack of medical evidence I’ve obtained. Such evidence would usually be needed to authorise such absences. But I can’t possibly produce it, as little man won’t step foot in the dentist meaning I can’t request such written evidence. This is a fact but regardless of this, I know the court would not understand such a situation, therefore brand me an irresponsible parent before throwing me in jail, giving me a huge fine that I just can’t afford to pay, or even worse… Both!

Well, that’s about it for now! Just a quick thank you to all my lovely readers and fellow bloggers for your support and well wishes. Admitting to the world that depression has taken ahold off you, isn’t at all easy… But the response you all gave and tweets you sent just proves its worth speaking out and that no one is going to think any less of because your depressed. As you can see I’m slowly getting back to grips with blogging once more, though its taking long than expected I’m still here! Its a tad strange as I’ve always thrown myself into my writing when depression hits me! However, this time things were very different indeed.

Onwards and upwards from here on now!

Hope your all bright and well.

Bye, bye for now.

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Aspergers and how it really affects us as a family

12 Oct

Some people comment “It must be so difficult for you as a parent” My answer is always the same… “We’ll, I don’t really know any different”

You see, your born with Aspergers Syndrome and given little man is my first child it means I’ve been parenting a child on the autism spectrum for some 12 years now. It’s not like he suddenly got it and as a result everything had to change! You adjust from child free young women to mum and you adjust in the way that works for you and your child regardless of any condition or disability.

Ok, that doesn’t mean we don’t have difficult days… God only knows we do! But we have good days too.

The thing is, little man isn’t sick, his not got a disease but a condition. His a child that is very able he just struggles within certain areas of life but is able to learn skills to make these areas more comfortable.

There are some very difficult challenges that come from parenting my little man, the lack of sleep is most probably one of the hardest. But then so is watching him become extremely anxious and upset and being powerless to fix it.

I’ve mentioned before that for us the “label” isn’t an issue. It’s my opinion that many families need to acquire a formal diagnosis to open doors to services (that even then you have to battle to obtain them). Autism is a spectrum and although some families don’t feel the need to seek an official diagnosis, many others do.

A younger Little man with a younger Alice just before diagnosis

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However, there are some downfalls of that diagnosis and that’s the way others suddenly treat your child. We found ourselves fighting a discrimination case that we brought against Little man’s old primary school as he was forever excluded, bullied, isolated and more. The good thing the label did do, was give us the grounds to bring a case and ultimately win it.

The truth is the official diagnosis helped us get little man the education and treatment programmes he needed! It didn’t change Little man, he was still the same little boy he was the day before diagnosis… Yes he had Aspergers he just didn’t have Aspergers on paper!

Little man with baby brother Harley now 2

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In all honestly, life is much harder when your child has Aspergers but mainly because the system… It’s the system that needs fixing not the child.

Early intervention is extremely important as we all know. Nonetheless 18m to 2-year waiting lists to even see a child paediatrician is just diabolical! It’s in this space of time your child starts experiencing certain difficulties but has no access to the appropriate services! By the time he has the diagnosis the difficulties are now boarding on extreme yet your waiting another 18 months for an assessment for recommended treatment of appropriate programmes.

Little man’s siblings do often find things difficult especially Alice-Sara who has often experienced violence at the hands of her brother and his unpredictable behaviour. Yet, she has always been a sister to a brother with Aspergers and although this doesn’t make things different its still all she knows.

Another sibling war

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We get on with things… We are presented with problems such as that above we tackle them and we keep on tacking them in till improvements are made. Sometimes these are made quicker than others.

I’d be lying If I said little man’s Aspergers didn’t affect us as a family… Of course it does! But life isn’t unbearable, it isn’t a total display of darkness. Days spent full of meltdowns and distress. Sometimes Aspergers doesn’t come into it! Not everything he does is down to an Aspergers trait, sometimes his just having an almost teenage moment and although behaviour can seem challenging its just that of being a child growing up and having a moment of hot headedness.

Aspergers is apart of little man but it doesn’t define every aspect of his personality and even when it does it doesn’t have to be in that of a bad way.

Aspergers makes little man more goal orientated and rule bound which can be an extremely beneficial trait for a young boy. He is passionate and honest (most of the time) and very intelligent in many areas.

Parenting little man has also made me change as a person. It’s introduced me to a whole new way of thinking. It’s given me drive and passion, opening my eyes to what it is I’m good at and what I want to do with my life.

It’s brought me here to this very blog, its got me writing, sharing something that’s important!

We’re happy and although somedays we may seem as though we are not! We are… We are happy!

Help Susanna Walk Appeal

14 Jun

Some of you may remember the review myself and the children did a while back on the fabulous restaurant ‘Frankie & Bennys’

We loved it, rated it highly and have been back a number of times since.

Then yesterday I received an email about a very special appeal called “Help Susanna Walk” which Frankie and Bennys are supporting.

The appeal really touched my heart and I just had to make my lovely readers aware of it and see if any of you could possibly help this beautiful little girl who wants nothing more than to be able to walk independently.

A waiter who works at the Frankie & Benny’s restaurant in Widnes has a beautiful five-year-old daughter called Susanna who suffers from Cerebral Palsy.

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The waiter and his wife are desperately trying to raise money to send Susanna to Missouri in the US for a life changing operation that will enable her to walk unaided. Missouri is the only place she can have surgery urgently – in the UK there is a 2 year waiting list which would mean Susanna would miss her window of opportunity to have it done as she will then be too old to qualify ( I know it sucks).

The operation has a 100% success rate. The family have so far raised £15K but it’s been a struggle and there is a long way to go as they need £60,000 in total.

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Frankie & Bennys is determined to raise the money by the end of July 2012 and have promised that this beautiful little girl will walk properly like all of her friends. Frankie & Benny’s is embarking on a nationwide fundraising weekend on Saturday 30th June/Sunday 1st July in every single one of their restaurants where they will donate £3.95 from every child’s meal purchased as well as many other specific fundraising activities for each individual venue.

How you can help

Frankie and Benny’s is a fabulous restaurant and you can feel that you’ve contributed just by enjoying a meal with the children on the specified dates as £3.95 from each of kids meal purchased on this date will go directly to Susanna’s appeal.

If you can’t visit you’re nearest restaurant on either of the two dates and you would like to help Susanna walk then you still can. Just visit the “Help Susanna Walk Just Giving Page” which has been set up as a place people can donate. You can give as much or as little as you can.

What the money raised would do

The money raised will pay for Susanna and her family to travel to and from the States for the operation itself. It will also provide accommodation for the family for a month following Susanna’s operation and further intensive physiotherapy. Money raised will pay for further treatment and aftercare on her return to the UK and hopefully enough will be raise to also provide Susanna with some equipment to aid her speedy recovery.

Susanna only has a short amount of time left whereby she qualifies for this operation, hence the need for immediate action. By raising this money now, Susanna will hopefully have the operation in September and be recovering well by Christmas this year. Just think how amazing it will be for us all to think we have played a part in ensuring it happens.

For more information about Susanna and her family, you can visit the links below:

The Help Susanna Walk Website

The St Helens Star Website

The St Helens Star News Page

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Disclaimer: This is not a sponsored post and I haven’t been paid to write this, I have done so to try and help raise awareness for the appeal and to help get little Susanna walking.

Gold stars for G

29 Jan

Guess what everybody? Im finally becoming a well focused, high functioning human being. Can I just show my appreciation to the person who created Melatonin. Whoever you are Thank you.
Wow was starting to forget what a nights sleep felt like! No really I was!
Sleep is something me myself or my son are not very used to. His been taking Melatonin for around two weeks now. As you may of worked out yes there has been some improvements taking place:) If you follow the blog you will remember sleep was non-existant. The last time I wrote a post about bedtimes was just a few days after starting Melatonin and things were going ok. Melatonin is no wonder treatment but once it’s effectiveness starts to kick in then oh boy it is extremely welcome.
Knowing my little boy is getting that much needed sleep that his little body so craved makes me want to cry with happiness:) Watching him run around full of life is a exceedingly good felling.
His a little boy My little boy! all little boys need a good nights sleep to be there best tomorrow. I tell him this every single night and I think he has started to listen. Gradually I’m seeing improvements in his behaviour and gradually for this reason his started to see more stars on his chart meaning more rewards for G. His over the moon at this and as you can see so am I:)

Monday finds (week 1)

19 Jan

This is week one of my project Monday finds. All my finds are based on or around Aspergers and ASD. They are all finds I have come across though the week. ENJOY:)

Aspergers web wing
Join the aspergers web ring or any other ring that interest you. You can join in forum chats, create your own profile, submit your blog to the ring directory or create your own ring. Do all this at http://webring.com

Meetup.com
There are many meetup groups you can join. Chat online and attend meet ups in your area once a month. Visit
http://aspergers.meetup.com

Get a free DVD
The website for the treatment centre in America are offering free DVD’S just fill out a short form. Visit
http://www.autismtreatmentcentre.org

One for the UK
Read about the Dore programme and how they can help with many developmental disorders. Visit
www.dore.co.uk/dvd.aspx or www.dore.co.uk

Great read.
If you love great reads then read this!
All cats have Aspergers
It’s a playful look at Aspergers
Get it at Amazon for $9.99 visit www.amazon.com

Any problems with these links then you will be able to find them all in my sidebar:)

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