Saturday, 20 December 2008

Night to remember


The music throbbed.
The lights flashed
The dance floor was heaving.
I scanned the room and then I saw him.
The most handsome man there.
Our eyes met only briefly but his radiant smile remained as I walked towards him.
I danced his dance.
We stimmed we rocked.
I squeaked with his squeaks.
He held my hand HE HELD MY HAND!!!
I felt we were the only two people there. Worries forgotten as we lived in the moment.

I felt connected.

The evening was then cut short as Cs staff had to take him back (end of shift). But it was a magical night, Cs night club debut, one I will remember for a long time.


No fingers in ears!!

Cs first taste of alcohol!

Did i mention he held my hand!!!


He was fasinated by the smoke!


Merry Christmas Everyone!

Friday, 12 December 2008

Wasn't prepared

I wasn’t prepared for C growing up so fast!!

C has been in his group home 5 months now.
I wasn’t prepared for the adult world being so different to school. We try and prepare our kids with transitions but no one prepares the parents.
I wasn’t prepared for the nightmare sorting C’s benefits out. I should have known better!.

I wasn’t prepared for the number of socks they loose! Guess what C needs for xmas!

I wasn’t prepared that since C’s move he would loose nearly 8lbs in weight. And as you know he cant afford to loose weight.

I wasnt prepared for the first 3 months they didn't take C out. That's why i did the post about When labels dont help.

I wasn’t prepared that as C wont let anyone near him to cut his nails (some are now ingrown) or brush his teeth that he now has gum disease and will mean he will have to be knocked out. This why i did the post about stress and pain.

I wasn't prepared to receive in the post a 'Service User End of Life Policy statement' - (they had prepared me that i would receive a letter about staff Christmas holiday rotas) it was very gruelling reading., about how they would lay his body out and dispose of his possessions.

I am used to seeing psychologists pretty charts of Cs head banging with usually little or no explanations or actions.


But I wasn’t prepared at Cs latest review to see this chart of the frequency. Their intervention plan said ‘may prove challenging’. Very helpful.! But it dose explain why they are unable to clean his teeth and cut his nails and not take him out etc etc . But they didn't tell me all this. Did they really think because C does not speak or sign - I wouldn't notice these things? Also interesting the only part of the graph they showed me was where there was a dip.

Maybe I should have for seen all this as I knew C would find the move hard but I hadn’t realised what it would mean to his health. To be fair to them I think all this would have happened anywhere C had gone.

I do think C is now over the hardest part for him. He is now a bit more trusting of a couple of the staff and i now have a couple of allies to tell me things. So there is at last a glimmer of light at the end of the tunnel.


The other week when C was home I was buying a train ticket for us both - turned round and he was gone. As in a puff of smoke - but there was no smoke!! And no I wasn’t prepared for that! Even though I have lost C a few times in the past - its been a while! I scanned the ticket office, I scanned outside my mind going into over drive as all the stories I had read on Autism Vox and F.R.I.D.A. flashed through my brain. I ran over to the man on the ticket barrier and asked if he had seen my son ‘oh yes I let him through’ I dashed past rounded the corner and found C waiting looking very distressed. Phew!
On the way back I asked the man on the barrier why he had let C through - he told me C was following someone who looked liked me but with longer hair!

I had my hair cut during the week.

Thursday, 27 November 2008

Mobile phone filming

C just loves to watch peoples feet as they pass by - he can get very excited much to the shock/horror and amusement of those passing. Their jaws drop to the floor, some stand rooted to the spot as they try and understand what they are seeing. Some trip as they aren’t looking where they are going. And of course you get a range of comments made.
To be fair many people do not even notice him and some are very friendly and come over for a chat.
C does this everywhere we go. He has a favourite spot in our local shopping centre near the base of an escalator, there is also a cafe where my friend and I catch up over a latte keeping our eyes peeled for any potential trouble, whilst C is in his sensory heaven.

The security guards know us well (as we have been doing this for about 10 years now) and keep an eye on C as in the past there have been the odd incident of small gangs of kids surrounding C. I have become hardened to the comments and the stares but its teenagers filming C on their mobiles that I cannot ignore. And this seems to be happening more often. C seems totally oblivious to it all!But as C is so happy watching feet - he’s not in anyone’s way and keeps himself to him self I am not going to stop him doing this. So what can I do? Any ideas?
My friend and I have found if we pretend to film the filmers they soon stop. Last week I actually took a photo of 2 lads thinking I will put it on my blog. But of course that would make me as bad as them - so I haven’t.

I did email my local police to ask if it was illegal to take photos of someone without their consent. And apparently its not!!

"It is not illegal to film or take photos of anyone although if the group of youths are the same group who continue to film your son this could potentially be harassment which is an offence."

So does this mean different youths taking films is not harassment??! I decided to write to a few other organisations to see if anyone could offer advice. And thought I would share the responses, they weren't very helpful but some of the links may be useful to others who are being harassed.

Mencap said
Thank you for your email. Unfortunately we are not in a position to advise on this situation, however there are a few organisations I would suggest you approach. You could try the Citizens Advice Bureau. You might also find it useful to approach Chilndet, who provide information on Internet safety, or Respond, who offer counselling and advice/support on abuse for people with a learning disability.

I emailed Respond but they haven’t responded!

The NAS suggested i contact Community Legal Advice.

I emailed The Office for disability issues;
For guidance on your son's rights under the Disability Discrimination Act (DDA) you may wish to contact the Equality and Human Rights Commission (EHRC). The commission is an independent organisation which provides advice and information to disabled people and the general public, amongst others, on a range of subjects, including on disabled people's rights under the DDA. website at http://www.equalityhumanrights.com/en/Pages/default.aspx.
The DDA prohibits discrimination in the context of employment, education and transport, and the provision of goods, facilities and services.
The DDA says that harassment occurs where, for a reason which relates to a person’s disability, another person engages in unwanted conduct which has the purpose or effect of violating the disabled person’s dignity, or creating an intimidating, hostile, degrading or humiliating environment for him. A new provision, explicitly outlawing harassment for a reason related to a person’s disability, was introduced in 2004. It does not, however, cover hate crime, general harassment in public places, or specific types of abuse.
However, other legislation may be relevant. The Protection from Harassment Act 1997 provides some protection against harassment and the Criminal Justice Act 2003 places a statutory duty on sentencers to increase sentences for offences aggravated by hostility towards the victim because of his or her disability.
You may also wish to have a look at the Crown Prosecution Service's policy statement on disability hate crime:
http://www.cps.gov.uk/publications/prosecution/disability.html.
You may also wish to note for example (pg. 46) that the Department for Children, Schools and Families has convened a taskforce on "cyberbullying". See also the proposals concerning removing inappropriate content from such sites as YouTube (pps. 32-37).
Yours sincerely,

I emailed the Equality and Human Rights Commission - they just suggested I contact a solicitor.
My Case manager has also flagged C up to the Police Vulnerable Adults Unit, so they are aware of C and what is happening.

There are various Autism awareness alert/information cards that I could hand out but I was thinking of designing my own - what would you write on it?
Since writing this

Saturday, 15 November 2008

Hope


I was very pleased to hear that the plight of fruit and veg who were discriminated against because they did not comply will soon be over. Maybe there is hope for the rest of us!


Earlier this week I attended the Carers UK summit which was very interesting. There were lively debates and voting on many topics. Phil Hope MP, Minister for Carers gave a great speech. Because he has some first hand experience of caring he knows many of our issues. He is very new in his job so hopefully very enthusiastic. He urged us all to email our MP’s so to keep our views on the political agenda. Carers UK do some excellent campaigning and influence many policy makers. And is free to join.

There was a wall where we could put up our thoughts.

Whilst in London I also took the opportunity to visit Stephen Wiltshire’s gallery. I’ve seen his pictures on TV and on his website, but it was great to see his drawings in person. He is very talented. I treated myself to 3 of his prints (well post cards as couldn’t afford the originals!) Stephen also sent me this photo to my on my Faces of Autism blog which you may have seen.

So a great day in London, but I did miss not having C with me on the packed commuter trains as people give us a wide birth!

Other news:
Id also like to mention my dear friend DJ Kirkby (who I had the great pleasure of meeting a few weeks ago). DJ was diagnosed Asperger earlier this year (by the same person who diagnosed C!) and has written a book which comes on sale soon - so a great idea for a Christmas present! Tickets are on sale for what sounds like an exciting book launch. I am hoping to travel down with the beautiful Halo - your welcome to join us!

And Kev at LeftbrainRightBrain has launched a new website called Autism Myths - its worth checking out.

Wednesday, 5 November 2008

Stress

Thinking over C’s life I have been most stressed when C is in pain either through self injury or when he has been ill and it has been difficult to diagnose as he wont let anyone near him, so sometimes the illness gets left untreated for long periods because of his self injury. And then when diagnosed it is difficult to get medication down him! It can be a vicious circle.

We all feel and show pain differently. We all tolerate different amounts of pain. Some of us even like inflicting pain on ourselves.
People look at C and assume because of his head banging he must have a high pain threshold. But when he is in pain he head bangs more. Others see it as this is just what C does. Not that he is trying to tell us something.

So I was very interested to read this summary of a local project that has recently been done.
The project involved talking to people with learning disabilities, residential and day service staff and carers.
The project found that;
14% of day staff,
33% of residential staff
and 66% of family carers
think that people with learning disabilities have a higher pain threshold than people with out learning disabilities.

There is no evidence that people with learning disabilities have a higher pain threshold than other people.

86% of day service staff said that they had taken medication for pain within the last 3 months. Only 4% of people with learning disabilities had been offered medication in the same period of time
79% of residential staff that they had taken medication for pain within the last 3 months.
Only 39% of people with learning disabilities had been offered medication in the same period of time.
We all need to know that;
People with learning disabilities feel pain as badly as other people. People should not have to be in pain.
People with a learning disability may not say they are in pain, but their behaviour might change. (doesn't every ones?!) We need to find out if people with a learning disability are in pain before saying they have "challenging behaviour".
Staff and carers can use
pain picture cards with people. However for some like C who is unable to use picture cards so pain signals and treatment should be identified in the person’s Health action plan.
Staff need training in pain recognition and management. Health screening needs to improve.
In July this year there was an
Independent inquiry into access to healthcare for people with learning disabilities. The inquiry was ordered in response to Mencap's ‘Death by indifference' report, which told the stories of six people with a learning disability who we believe died unnecessarily while in NHS care.

Did you know GPs are getting £100 bonuses for carrying out health checks on people with learning disabilities. Shouldn't they be doing this anyway?!



So in light of National stress awareness day, Ive had my say - now over to you - so what makes you stressed?

Wednesday, 29 October 2008

Autism Speaks are here in the UK

Bob Wright from Autism speaks US has landed in the UK. For those living here you may have seen them on BBC breakfast time in The Telegraph and The Times.
Autism Speaks attended the inaugural Annual TreeHouse Lecture, entitled “Are we Ambitious Enough about Autism?” and have already met with some of our MPs. Action for Autism has also blogged about their arrival.

So my UK blogger friends - what are your first impressions?
And my US readers - we would love to hear your thoughts!
So - Does Autism Speaks speak for you?
And i am very happy to report that C's home have much improved. Thank you for your support and some excellent suggestions. :)

Monday, 13 October 2008

When labels don’t help

Every week C‘s home send me a photo.
This one sent a few weeks ago - Cs finger speaks volumes! (even though it was inadvertent)
I haven’t written much about Cs new home as things have not been going to well. I expected settling in problems, but not the ones that C ended up facing.
The home I spent 2 years searching for, the home I felt had the right attitude and would be right for C has totally let both C and I down. I have been gutted. C's last 2 visits home I haven’t wanted to take him back. (Note to self. The Managers of these places do a good PR job but its the hands on staff who do the actual caring, and can be a different story)

As C does not speak or sign all I have had to go on his appearance and body language (which I am very good at). And what the staff tell me - which hasn’t been much.

I was very concerned about what I was seeing. I thought the staff were trying to get away with as little as possible. Neglecting him and not taking care of his basic needs and welfare. But in reality what I found was that staff were taking the line of least resistance/avoidance as they were frightened of him. (Shrek lives up to his name!) Not a good start. (Note to self - trained staff does not necessarily mean confidant staff. )

The labels that preceded C to the home have not helped. Low functioning. Challenging and self injurious behaviour. And of course they would have read all his reports and spoken to staff from his school who would have told them some horror stories.
So they were seeing his labels and not C as a person first. Putting mountains in the way that need not have been there.

But after making some ‘big’ complaints and much talking with the home with the help of my Case Manager I think we have sufficiently kicked them up the back side and things have thankfully started to improve for C.

Many thoughts have been going round my head through all this (especially at night) if this was the best home i found -what must the others be like. And my concerns about what will happen when i am no longer around to keep on top of things have quadrupled. So i need to work harder on encouraging and supporting them (!!) instead of being upset with them. (Note to self. Research back up plan if it doesn't improve enough and i feel i need to take him out)

And I was also shocked and find it hard to believe to be told that I am 'rare' as a parent. That not all the people in C's home (and other homes) have concerned parents who take an interest and want to be involved for a variety of reasons. I find this very sad. But it is also no excuse for them to do their best. (Note to self. Offer to adopt one of the other residents who has no one looking out for them)

I came home to a parcel yesterday a ‘framed’ photo of C in the homes sensory room, laying on a vibrating mat, listening to music and watching a bubble tube, looking happy and relaxed. I took this as an apology from the home and trying to show me that C is ok.
Its going to take a lot more than that to regain any trust. But at least I feel they have got to message, and i appreciate the sentiment.

Actions speak louder than words and they are at last making the right actions.
Time will tell.
I hope my next post will be more cheery!

Wednesday, 24 September 2008

Happy Birthday C xx

C is 20 today! I cant quite believe it. Reflecting as I am today the years seem to have flown by. It was my birthday a couple of weeks ago, but my son turning 20 has made me feel old!

‘The road is long with many a winding turn
that leads to who knows where’
This was at the top of the charts the day C was born. As was
‘When I'm feeling blue
all I have to do is take a look at you’.
Both songs are dear to my heart.

And the road has been long, the road has also been beautiful. There have been many steep and rocky parts as well as a few pitfalls. We have met some wonderful people along the way, some of whom have travelled with us. 16 years ago I was struggling with C in a long post office queue and a lady came to our rescue. She has been my rock and best friend ever since.

Looking back many things have become easier (like queuing) as I came to understand C and his ways and our routines became more established. I also learnt to deal with my stress better and C has learnt ways to help himself cope with things. It is very exciting as i feel C has many hidden depths that the world has yet to see.


For Cs birthday treat i took him on the London eye, something i have wanted to do with C for years. But i didn't think he would be able to cope with being encased in a glass capsule 135 metres above London's skyline with no means of escape. Until now.



Not only did C enjoy it but he also seemed fascinated by the whole experience.

To me this shows how far he has come, and anything is possible. I was soo proud of him.

C this is for you. Your favorite song - I Believe In A Thing Called Love. And i do as we travel through this life embracing Neurodiversity.
Happy birthday gorgeous! xx

Sunday, 31 August 2008

Liberty Festival 2008

C is still finding the move to his new home difficult. He has been home for a couple of weekends now which have been great, and has been overly excited! His new home is close enough for me to be able to just take him out for a day, which I did yesterday for the first time. We went to London to see the Liberty Festival. Celebrating the contribution of Deaf and disabled people to London’s culture at Trafalgar Square.

When I picked C up, I did a quick mental check of his appearance (as us mums do!) his hair needs a cut as do his nails, but as yet he is not letting anyone intrude on him that much. I looked at what he was wearing, as its weird what other people dress him in. Tee shirt- good, long shorts- good. He looked great- he looked gorgeous until I scanned down to his feet. Socks AND sandals!! Why do people do this to people with learning disabilities (I also see this in my home town). He’s 19! C should be trendy and fashion conscious!
So the first thing I did on the train was to take them off without getting my ears drums burst from Cs excited squeals.

We arrived in London in glorious sunshine, the first we have seen all summer. Trafalgar square looked great and had a wonderful carnival feel to it, with music, comedy and caberet, performers, stalls, side shows and wafts of cooking smells.


There was a lot to see, my favourite was Barbie imperfecta - The chance to mess with the media’s idea of perfection, if you ever wished Barbie to look more like a real people this is your chance.
I tried to put Barbie’s fingers in her ears but she wasn’t having it! What would you have done?





Do you remember Chip? They used to be on street corners begging for money. Thankfully you don't see them any more. Barbara Lisicki 'freed' several of them and were asking people to give them makeovers!










Cs favourite was feet watching.









At one of the stalls I signed something, turned to walk away when I heard "Casdok -are you Casdok?!" I certainly wasn’t expecting that! And ended up having a lovely chat with 2 very charming young men from the London Autistic Rights Movement, Roderick and Tom.






These balloons then caught my eye as there was a leaflet with a photo of Amanda on it from her Getting the truth out site (which is under construction at the mo) The balloons stood for people trapped in the care system without access to information and communication technology. I couldn't stand and chat to the people from AutreachIT at this display as C had had enough by then.






So hot and weary we went back down on the tubes which C cant get enough of! (Quickly walking past this poster!)
And then headed south back to Cs home. He was not impressed to be going back so soon after a lovely day out. I found it hard to as he didn’t want me to leave. Fighting back the tears I said goodbye and handed over the offending pair of socks.




This Kick Ass blogger award is from Bobbie. Thank you Bobbie.

I'm only supposed to pass it on to 5 other Kick Ass bloggers which is not easy as most parents of Autistic children have to kick ass! So (and i hope Bobbie doesn't mind) i would like to pass this on to you all.

Thursday, 14 August 2008

What matters..

There are many myths and theories surrounding autism.
Autism has been around longer that it has had a name and much longer than many of the theories below were even invented.
Here's a light hearted collection of some of the theories that are around.

Did I shampoo our dog?!
Or was I specially chosen by god?

When pregnant was I stressed?
Or did the devil my son possess.?!

Is C the next stage of evolution?
In the air was there pollution?

Did I conceive in late spring?
Do I remember if it was raining?!

Is C a crystal child waiting to ascend?
Or is he one of the mutant X-Men?

Was it the dental fillings I had?
Or the triple vaccine MMR jab?

Was it my lipstick that was red?!
Or the mobile phone near my head?

Could it be a food allergy?
Or my disordered personality?!

Was it the smoking and drinking which was bad?
Or C having an older dad?

Was I a cold refrigerator mom?
Who always had the TV on?

Or does C have an extreme male brain?
Many things that would explain!

C wasn’t held to ransom,
Nor is he a victim or a madman.

Words hit like a fist - like Retard
Or he’s a brat whom I didn’t spank hard.

It doesn’t matter to me what was the cause
Or the whys and wherefores.

As if you look at my family tree
Its more than plane to see!

What matters is the here and now,
Not the why, not the how.


Autism has made C who he is today -
I wouldn’t have him any other way.

I support C and help him as best I can.
I love him for who he is. C a wonderful young man.

Monday, 28 July 2008

Our reality

If I had a pound for every time I heard someone say ‘if he were my son I would give him a good spanking’ or ‘if he were mine I wouldn’t take him out in public’ etc etc - I would be a rich woman. Not one day has gone by when I have taken C out that I do not hear at least one derogatory hurtful remark about my beautiful son. So sadly I think Michael Savages’ recent thoughtless comments on autism represents a proportion of societies views about our children.

Wasnt C cute!
And here's C when happy now;
video
When i see C this happy my heart sings. But others find this large display of pure joy disturbing embarrassing and even frightening. We have emptied countless cafes, shops, or even been asked to leave.

When C was diagnosed all those years ago many friends disappeared as they didn't know what to say or how to relate to C. Some didn't want their child 'catching' autism. Our world shrank as people kept away. Only recently C and i met up with someone we had known many years ago. We had a coffee - she went to the loo -and never came back.

You get used to living on 4 hours sleep, cleaning poo off the ceiling, trying to find something C may eat. You get over wondering what his voice would sound like if he ever spoke. And there will always be another funding battle to fight.

A new way of life emerges and becomes the norm.
Other things take priority, the superficial, artificial and materialistic things are just that, they are things.
C gives me so much more. A smile, a look, a delighted squeak. A licked clean plate (on those rare occasions). A licked clean train carriage window is more often.
Our odyssey has not been easy. There have even times been times when I thought he was going to die. All the comfort I was given by doctors, was ‘wouldn't he be better off dead’.
Society judge him, make fun of him, they film him on their mobiles. C has had dog biscuits thrown at him in the street, and once was even punched by a passer by. Some of my family are embarrassed by him, some say they are scared of him others pity me and give C no second thought.
They don’t see the beautiful being that he is, or the gifts that he shares. They don’t see that C is happy and does have a quality of life. They cant get their heads round it, or rather they don’t want to or even try.
Living with disability can be tough at times, but you get there. It is also full of much love, joy and laughter. And i wouldn't have it any other way.

It’s the prejudice I find the hardest part. The attitudes of some family and friends and some professionals whom we are supposed to trust. And the strangers in the street.

And that is on going. This is our reality. C by the very nature of his autism and challenging behaviour is isolated and in turn isolates me as his mother. This is also true of many other carers in many different situations. There are 6 million of us in the UK. 175,00 are under 18 years old. Carers save the country £87 billion a year!!! (But C and i have just put a dent in that!)

So I have been overwhelmed here in blog land that C and I have touched so many people. Especially as many of you are not parents of autistic children. Everyday there is a new comment or email spurring me on at this difficult and emotional time for both C and I.

And i have been bestowed this beautiful Arte y Pico award by Exmoorjane, Mrs C , The dotterel and Jeff Deutsch. Thank you all so much.
I would like to pass this award on to bloggers (I'm sure you all know the rules) who have also been through transitions.

First Deb who's journey when her daughter went into a group home i followed in floods of tears. And has helped me so much to know she is now settled and happy.
Honeysuckle who's was the first transition blog i found.
Cheri who is now discovering herself after her children left home.
e with her lovely blog who is about to go through a transition has reminded me that all mothers go through this.
KC's blog. The whole family deserve many awards as they support each other through a difficult time.
And Baking a wish, a blog i only recently found is filled with so much love.
And as for C settling in to his new home from home. Progress is slow, and as yet I cant see the light at the end of the tunnel.
But we are on track! :)

Monday, 14 July 2008

C's world

C's world changes today. Everything and everyone he knows will change. My blond blue eyed little boy of mass destruction has grown into a handsome young man, is leaving school and moving into a home entering the adult university of life.


(You can click on the word cloud to create your own)
It amazes me where all the years have gone. My tiny little bundle of joy now towers over me. I had no clue when he was young what his future would hold. The old mental asylums were still open then, and have now thankfully mostly closed. Even our local day centre is closing and services are becoming more modernised.

There is a lot more choice now for homes for autistic adults because of The White Paper, Valuing People: A New Strategy for Learning Disability for the 21st Century. It is the first White Paper on learning disability for thirty years and sets out an 'ambitious and challenging programme of action for improving services.' Its about individual’s wishes, choices, rights and goals. (about time to!!) And I and other parents will hold them to it but it can still be a post-code lottery.
After all we may all end up in some sort of home one day.
Since the White Paper ive seen a mother get a council house for her son and use Direct Payments to fund staff to go in.
I’ve seen a group of parents get together and buy a house for their children who know each other so they can stay together with their peer group.
I’ve seen a house built from scratch to accommodate a persons specific needs.
I’ve seen individual flats, small homes and larger more specialist homes (as I have chosen for C)

There is more choice and I hope these choices continue to grow as autistic people are listened to more, and awareness grows. Care standards are much higher and homes are inspected regularly. The Government have also listened to the NAS and their I Exist campaign. But there is still much to be done and improved upon.

I found this poem written by Wendy Lawson which she gave me permission to use.

Change, change and more change,
Of context, place and time.
Why is it that life's transient stage,
Plays havoc with my mind?
You said,"We'll go to McDonald's"
But this was just a thought.
I was set for hours,
But the plan then came to naught.
My tears and confused frustration,
At plans that do not appear,
Are painful beyond recognition,
And push me deeper into fear.
How can life be so determined?
How can change be so complete?
With continuity there is no end
Security and trust are sweet.
So, who said that change would not hurt me?
Who said my 'being' could not be safe?
Change said,"You need continuity"
In order to find your place.
For change makes all things different, They no longer are the same.
What was it that you really meant?

All I feel is the pain.

It is hard to tell how much C understands. He became more distressed with each visit to the new home (but at least they have seen his head banging and how I handle him) Two staff from school will be staying over night with him tonight.

So as C moves and his anxiety takes over for the next few months, the only control he can exert in his new world are his bodily functions (in and out) and his head banging. I just hope his helmet does its job and he finds peace and trust soon. I hope it doesn't take C to long for him to train his staff! He certainly trained me well!

I don't know when i will see C next, i am being given conflicting advice how long i should leave him before i see him, so i will just play it by ear and go with my gut feelings.

Saturday, 28 June 2008

Food for thought

When I am stressed or anxious I comfort eat, my weaknesses being cheese and pasta. C is the opposite, he wont eat at all, so will go for days without eating. So with Cs impending move we are both anxious and dealing with it in our different ways.

Since the day C was born feeding has been a struggle. He would quite happily or rather unknowingly starve to death.
Its not because he is a ‘picky eater‘. Eating is a complex motor task as well as having many sensory issues, which C (I think) finds all too much at times. He finds using a knife and fork too difficult so prefers to finger feed, when he does eat. Chewing is also a problem. Hunger just does not seem to register. I recently read that his long thin bones are due to his diet, or rather lack of. No surprise there!

C will have fads, if he eats it will be the same thing for a year or so, and then just stops eating it. But this has become shorter, becoming months.. It takes me a good few days of trial and error to find something else he will eat. (I wont go into the amount of food i have to bin.) He has also had fads of eating non food items (Pica)!

I haven't had C tested for food allergies because the range of food that he will eat is so small. He does unsurprisingly have stomach problems, due to his not eating. Its a vicious circle.

C is painfully thin, just laying in a bath will bruise his back as his bones stick out. I’m just amazed how he has grown to over 6 foot or has the energy to stim in the way that he does, on such a meagre diet with hardly any variety.

So i don't have any tips to share about helping your child to eat, i think i have tried most things. But would love to hear yours if you have any!
I found this fascinating post and comments over at NTs are weird, which if your child has eating issues I think is an interesting read.
Do you have any food fads?

Wednesday, 11 June 2008

Parenting skills

As you know C will soon be moving into a full time home. One of the things this means for me is that I will have to give up the part time work that i do and love and find a flexible (so I can still have C home) full time job.
According to a survey a mothers job description would mean she could earn £30,000 pa (and the rest!) Parents develop many skills and as an autistic parent you develop more specialist skills and find sides of your self you never even knew existed.

I found this example of a resume for a housewife. However under 'experience' I think mine would read more like this;

Expert poo cleaner
Problem solving
Creative
Negotiator
Diplomat
Child development
Psychologist
Psychiatrist
Anger management
Stress management
Law
Human resources
Advocate
Campaigner
Mind reader
Therapist
Dr
Specialist chef
Researcher
Can read body language
Sign language
Good at following routines
Patience of a saint!
Thomas the tank engine expert
Can work under stress and on very little sleep.

With my love of all things Star Trek I quite liked the sound of this! Would you give me a reference?!
What would be on your CV and what would be your fantasy job?

Thursday, 29 May 2008

Visits to new home

Putting C in situations where i know he will self injure is something i have spent his life trying to avoid or find inventive ways round. But there are some things like washing and leaving school you cant avoid.

Transitions are stressful! And that’s just me! I cant begin to imagine what it must be like for C. I have now taken C to his new home twice. The first time he was extremely anxious (I was glad of his helmet) and the second time he found very distressing. He was very bewildered and confused and upset. Some old behaviours have reappeared.
Here’s C acclimatising to his new room/ looking for ways to escape.
I hadn’t been back since applying for the funding. So I was very relieved that I still felt C will benefit from the move when he has settled. The facilities are more than i could have hoped for but much more importantly the attitude of the staff is positive, open and up to date. They have their own psychology team as well as art, music and speech therapists so C will have access to these if he wants them. As he is now an ‘adult’ it is all his choice (in theory!)
To keep myself busy and positive I have been making things for his new room. C loves watching reflective light and will loose himself in these CD pics.














And I have been rug making, they make great wall hangings as well as softening the blows his head takes.

To answer some of your questions
Mima - 6 weeks to go! Which isnt nearly as long as it should be or i would have liked.

Niksmom - a lot lot closer only 40 mins away :)

Chaininmagic - Thankfully everyone is taking Cs head banging very seriously. But yes I still am a nervous wreck!

Honeysuckle said and I couldn’t agree more ‘isn't it sad that young people without someone able to fight their corner will end up without any help?’
I looked at 42 homes over 2 years. I was very fortunate to be able to do this and then go through the funding process.

Menopausaloldbag - Yes it is a full time place (but he will still come home). How do I feel? A range of emotions. Excited for Cs future, hopeful that i have found the right place for him. Petrified about his head banging, especially in the short term. Upset that some people feel I am now at the end of my parenting and can now get a life, or whats the point of so much resources being put into a young man with Cs level of disability, and other such remarks. Plus all the other feelings a mother has when a child leaves school and goes into the world (times 100!)

Stinking Billy - Thank you!