Tag Archives: autism

Are my children's difficulties my fault?

Could a Diagnosis have saved our heartbreak?

As a parent there’s no real breaks. You are not allowed to lose your shit. You decided to have a child and that’s the end of it. Having a child with additional needs is no excuse – there are no allowances. I was reminded of this fact after finding it too much to cope with the Summer holidays alone (as my husband was working) with 4 children – three of which (it turns out) have additional needs and my house just falling apart – never mind the mess. Feeling so tired, exhausted (physically and mentally) and every burden weighing on my shoulders. I had no idea that this would lead to attending a Child Protection Conference in order to keep our children!child protection conference and autism

I discovered that the boys don’t like change – even if it is rewarding them for something. So can you begin to imagine how hard the holidays are for THEM? It was the summer of additional challenges, as our oldest was moving out to University – but not really doing much about it. He wanted to go without any real mention of his Asperger’s – just trying to get on with life – but unfortunately his condition had other ideas. In retrospect having my hair cut from reasonably long to spiky wasn’t the best idea. I was finding it all a bit much to cope with and I didn’t feel it unreasonable to ask for help (from my family) – simple things like the children flushing the toilet after themselves and not urinating all over the floor! After all the youngest of them was 6! Respite has never been an option for us as I am aware that there are children with needs far greater than mine, whose parents are not even getting this kind of support. Extended family never really have the children, not even for a day – well actually apart for the one child. putting added pressure on him (this has since been addressed). Just wanting, no needing, a little bit more help but it was not coming.

toothpaste in the overflow
I just wanted a day where I didn’t have to deal with extra things such as toothpaste blocking the overflow

It is all a bit of a blur now, and I don’t remember why it got on top of me so much more than any other year but it did. I can’t think about my kids as being a burden because they are not – but their needs were just too much for me to handle on my own. My basic needs just were not being met (I am talking being able to go to the toilet without something happening that meant I need to rush to ensure their safety!). I guess it wasn’t what I expected to be doing with children of their age. Of course they were just children. I should have been able to tell myself that it did not matter. Who cares if there is stuff everywhere; mud piling up on the floor from where the bikes have gone in and out of the house; why should my children load their own dishes into the dishwasher right?

This says it all for me today #rotten #nature

A post shared by Joy Gloucestershire UK (@pinkoddy) on

And then I snapped. . . . .

You see no matter how many days I coped with goodness only knows what, that one day when I just couldn’t take it I threw a toy across the room and screamed how I was fed up. I threw it so hard it made a tiny mark in my laminate flooring. The kids were upstairs and so they would have heard it. I felt awful. But never really thought more of it beyond that day. I apologised to the kids and got an earlier night. In fact it was completely forgotten about until some 3 months later when my life changed so much.

This picture caught my eye. Wonder whether people talk about it when they see it? How does it make you feel?

A post shared by Joy Gloucestershire UK (@pinkoddy) on

The Beginning of the Nightmare

I don’t really know where it began – but one day I asked our 12 year old son to load the dishwasher which resulted in him punching me rather badly. He then put a picture on Instagram basically saying I got what I deserved. I did hit him back in order to defend myself before pinning him down. My husband arrived and defused the situation. I said something stupid which was meant the way it sounds and this resulted in further foolish behaviour from my son that ultimately led to the school ringing Social Care on us. Initially a nice guy came out, and this was the first time anyone had mentioned that they thought my son has special needs. The guy from social care (from the RATs team) tried to pass us on to the appropriate team to get help for our son and assured me we were doing all the right things. We were unaware that they had decided to close the case and were desperately waiting for help. The only reason someone else came was because I phoned the police when our son attacked me again – and the case was re-opened and passed on to someone else.

I feared that someone had done something to our son (due to things he was doing online but I will never know because no-one could get him to talk and they just gave up trying to find out). I was honest about everything as I wanted help – even just to be told coping strategies, so I told Social Care what I did the day I snapped. I was worried that it could be my fault (which is a nicer thought than him being groomed online) that I brought my pre-teen son’s behaviour on myself (there was a lot more things he was doing but I will not go into that here for his sake): They agreed it was.

Before I knew it there was a team from the Diversion from Care and Placement Team – talking about doing things to prevent my children going into Care! I have said before how I feel I may have Autism but never before have I truly felt this – thinking of only I could be less honest and say/do the right thing. I was looking up every bit of information I could and my husband was getting stressed that I sounded too textbook. Social Care had nothing to offer in the way of help – they came to see if they could get us to do family things together – but actually ended up suggesting we do less. You see my family are my life and I plan so much to enrich their lives and ensure they feel loved! The new Social Worker saw things differently and decided that my children were at severe risk of harm of emotional abuse from me! Even the fact that I have provided them with a desk each (which are covered in toys) as I am apparently too pushy! Do you know how that hurts – even now is that she was saying that it was because I was abused as a child: That I did not even realise that I was doing it. Fearing she was right and that I was oblivious to what I was doing I waited for help – only stopping myself from suicide because I knew that that would help nobody. I can fully understand the lady who has run away with her children because the thought entered my head too!

I found myself in a Child Protection Conference defending my right to keep my children. Absolutely everything brought up and used against me. From putting my children in danger by putting their pictures online, to the fact that my son’s notes had not been updated over a medical matter – so I was blamed for not caring and it ultimately being my fault. Feeling a sinking feeling as they recalled that my son broke his arm badly when he was only four years old – and I had no witnesses around. Things I said twisted, people saying incorrect things in front of us. I had to stay quiet so as not to come across as over-emotional (again something they said as I was SO upset about the experience). The whole experience completely disrupted my family (they had to keep going out and pulling the kids from school and questioning them) – did I mention that they do not cope with routine changes. Plus they wouldn’t consider that The Sensory Seeker has a disability (despite the fact that he had a statement of educational needs) because he was NOT DIAGNOSED AS AUTISTIC. So when he apparently said that he heard me say that I wanted to kill his dad it was used as actual evidence of how evil I am (I hadn’t even said this at all!)

Parents are meant to get all the reports 48 hours before the Child Protection Conference – but this wasn’t the case. The Chair hadn’t even got  all the information at the start of the CP Conference – and some of which we were blamed for (although we were unaware we had to give it!). Our son was asked if he wanted to go because of his age but instead sent an advocate. I didn’t think it a good idea he went especially some of the things said about him and us. In fact it was even suggested that The Sensory Seeker’s difficulties are due to ME emotionally abusing him as he did not get an Autism diagnosis! Thankfully his head teacher knows how hard I have fought to get everything possible to help our son and how much progress he has made with this support and backed me up. Still absolutely heartbreaking to hear, and what if I wasn’t so forthcoming (or pushy as teachers are calling parents that fight for support!).

physical and emotional abuse definitions child protectionThe Child Protection Conference ends up with a vote – everyone around the table says what their verdict is and the majority is the deciding factor. As I sat with my pen and paper tallying up the results it came down to the last person. People who didn’t know us, didn’t know the facts and certainly had things wrong! Luckily for us it went the right way – but frightening to think one more vote and things would have been really different. We did not receive any help, support or advice. The social worker passed us on to a family worker and she had fleeting visits at our house before passing us to a charity who just had one meeting at the school. The awful thing for me is that they closed the case down after our son got accidentally burnt with an iron and he beat me up one more time.

We never considered our son to have special needs but after the first social worker suggested it, so did the police, the school and CYPS – but no the latter won’t assess him and also closed the case down. He hates seeing people and has calmed down so much that we just don’t want to annoy him. There was a lot of things that went on that year, and one of them was that he got kicked off the school bus (apparently for persistent bullying but it was the first time we had heard about it). Social care were really keen that he caught that bus again but we decided against it. I later heard that the bus driver was taken off the route as he was found to behaving inappropriately let’s say with the children!Are my children's difficulties my fault?

I am so proud of our son and how he has come out the other side of this and is like a different boy again. Although we are still struggling with getting him to do basic things at least he isn’t being violent any more. As for me I have been taking anti-depressants and do not think I will ever get over what social care did to me, and my family and the thought of what could have happened. I think about all those poor kids who are having all manner of awful things happen to them (and even what happened to me) and it makes me feel sick to the stomach that I was consider even close to the same. That they wasted so much time interrogating us when actually if anything I am guilty of spoiling my kids and doing too much for them.

I want to thank everyone who supported me, especially my husband who held me up and defended me. I thought the most awful thing was going to happen and that I would have to leave all the people I love in order to keep the rest of them together as a family. I have felt so scared for so long of sharing my story for fear of losing or upsetting them – as well as people who don’t know me judging me. But I wanted to share in hope that I can help someone else.

 

Cheltenham Autism Support Group

Cheltenham Autism Support Group – For Families with Children on the Autistic Spectrum

About Cheltenham Autism Support Group

Cheltenham Autism Support is for families with children on the Autistic Spectrum run by Laura and Wayne. They provide the opportunity to meet with other parents and children affected by Autism. There is a soft play area, sensory room, dressing up, arts & crafts, lots of toys,and an outdoor play area. They also provide refreshments for both the adults and children.

Cheltenham Autism Support Group“Receiving a diagnosis of Autistic Spectrum Disorder can be somewhat overwhelming for parents, carers and siblings of the affected child. Many families feel isolated and lack vital support and understanding of the condition. Cheltenham Autism Support Group aims to combat these issues and provide families with an emotional and practical support network, enabling them to tackle and understand the uniquely wonderful world of Autism.”

Whether you strongly suspect your children to be on the Autistic Spectrum or have a diagnosis why not visit to access a wealth of information, resources and support and/or share your experiences. You may be able to offer help to others. Or just to let your child/ren benefit from the facilities and interactions with other children in a supportive environment.

When Cheltenham Autism Support Group Meet Up

Cheltenham Autism Support Group meet up for their Rainbow Days Sessions meet every THURSDAY at Gardeners Lane Children’s Centre, Cheltenham, GL51 9JW between 3:15pm-5:15pm: Plus every THURSDAY during the school holidays/half term between 9:30-12:30am and alternate SATURDAYS 1pm-5pm.

Cheltenham Autism Support GroupThey also meet once a month on SUNDAYS at Hop, Skip & Jump, Seven Springs, Cheltenham, GL52 9NG 10am-1pm – where there is also a Sensory Garden.

No need to book in an advanced just drop in and out when it is convenient to you. Find help with issues such as diagnosis, the new EHC plans, accessing Grants for the disabled, help with sleep, sensory issues, schooling, transport to school, diet, relationships, speech and language, and much much more.

Cheltenham Autism Support offers support, advice and a listening ear. You can also find them on Facebook or Email them at: CheltenhamAutismSupport@outlook.com

 

Logan Osborne: Man with Autism Graduates with Masters Degree

Logan Osborne: Man with Autism Graduates with Masters Degree

It shouldn’t be a big deal that a man has graduated with a Masters degree but I am sure that anyone touched by autism will know how much of a battle it can be. Their little habits, rituals, anxieties and lack of health care and social skills make it all the more difficult for them.  Any parents would be proud that their child has a first degree, so to go on to gain a Masters is even more impressive. I have written previously about my oldest son who has Asperger’s Syndrome going to University and so it is really reassuring to hear of the success of Logan Osborne.

Logan Osborne Autistic Msc StudentLogan Osborne first gained a BSc(Hons) Geography at University of Brighton in 2013. Now he has an MSc in Geographical Information Systems and Environmental Management and is looking for a job in geographical information systems.

Logan’s parents want to give some comfort to others that with the right support anything can be achieved. They say that the University of Brighton’s Disability and Dyslexia team gave Logan excellent support. Logan said that he felt that he could always talk things over with them, including checking his work, if he needed help.

If you or your child is thinking of going to University and have a disability then it should be declared in order to obtain the right support.

The Disability and Dyslexia team at the University of Brighton provides one-to-one mentoring and specialist study support, advice and help with applying for funding. Contact: disability@brighton.ac.uk 01273 643799, and for more information go to: www.brighton.ac.uk/current-students/my-studies/declaring-a-disability-or-learning-difficulty

 

Wear it for Autism 2014

Wear it for Autism 2014 #Giveaway

Wear it for Autism 2014

Date: Monday 6th October 2014

Time: Doors open at 5:30pm Show Starts at 6:30pm

Venue:  Le Chinois Restaurant and Bar, Knightsbridge, London, SW1X 9NU.

Price: £15 a ticket with FREE goody bag!

Please email lisa.robins@thevines.org.uk for a ticket order form

Wear it for Autism 2014

This red carpet event is back once again after its huge success last year.

Wear it For Autism is a fashion show with a difference. All the models taking part are Mums, Dads, Grandparents and Carers – who either have autism themselves or care for those living with the condition – they are having a full makeover and pampering before taking centre-stage. All the profits will go to the registered charity Anna Kennedy Online, which supports UK families affected by autism, including providing small grants for educational and domestic resources.

Judged by Steven Smith, Angel Sinclair, Dr Pam Spurr and Maggie Paterson, Sam Tomlin, Fiona Shepherd  the Winners  in each category for 2014 are:

Mums: Ann Wright, Sharon King, Maimuna Mutaasa and Lisa Embery-Donaghy

Dads: Craig Binns and Lee Cook

Grandparent: Sandra Trotter

Family: Anne & Steven Rann

Adult with Autism: Dani Bowman

Child with Autism: Sophie Jayne Garner

Young Carers: Demi Stamp and Emma Bell

Wear it for Autism 2014

Anna Kennedy OBE said:

“The idea behind Wear It For Autism was to spoil those who usually never get a chance to treat – or even think – of themselves. Living with autism can be challenging and extremely demanding so we wanted to create a special event, that would be fun for all involved ‘ 

Anna Kennedy OBE Wear it for Autism

Supported by Models of Diversity and Pineapple Performing Arts

Celebrity Presenters this year include: Arlene Phillips CBE, Kirk Norcross, Abz, Keith Mason, Dr Pam Spurr, Amy Willerton, Steve King, Jason Leech and many more.

Sponsors are Living Autism, Miglio Jewellry, Models of Diversity, Wish Want Wear, Damsel in a Dress , Third Sector Gallery and many more.

If you would like to be a sponsor please contact anna@annakennedyonline.co.uk 

This is not a sponsored post.

Disability access uk theme parks 2013 @pinkoddy #thesensoryseeker

Disability Access Guide to UK Theme Parks

Disability access uk theme parks 2013 @pinkoddy #thesensoryseeker

With half term just around the corner you may be thinking about what to do with the children. A theme park is a good idea for Sensory Seekers that like all that movement, smells, textures, visual images etc; but sometimes it is all too much, or too much for other people (strangers do not tend to warm to a child they do not know trying to touch them, never mind punching). It is for this reason that it is well worth checking the websites to  consider what the disability access policies are. This may include proof of disability (and what documentation),  any discounts for entrance (and/or any carers), car parking facilities, and special access to the rides. There are many reasons that disability access may be required, but there have been many people taking advantage of this, and things are changing. Make sure you are clear before you leave.

We have visited a few places over 2013 and this was our experience of the Disability Access:

Disability Access Merlin

I think that the Merlin Group are top notch when it comes to providing good disability access. When a Merlin annual pass is purchased, and proof of disability is shown, then a complimentary carer’s pass will be issued on the first visit. It is transferable between carers, but cannot be used without the disabled person. Proof is considered as Disability Living Allowance (DLA),Orange/Blue badge or a letter from the GP (with photographic proof).

Disability Access Legoland Windsor

Legoland Windsor was the first place we had heard of that had good disability access. We went with ASDfriendly, an Autism support online forum, and it is here we first discovered that a day out with a disability could still be fun.

Legoland Windsor Disability Access to rides

  • FREE Carer entrance ticket.
  • Loop System for hearing impaired.
  • Some staff who can speak sign language  (look for the word ‘sign’ on their badge).
  • Assistance dogs welcome; but they cannot ride and must remain with someone at all times.
  • Designated disabled car parking for disability badge holders (parking charges still apply).
  • Disabled toilet facilities.
  • Wheelchair hire.
  • Wheelchair accessible restaurants & shops.
  • Plenty of resting areas throughout the park.
  • Awareness band (to alert staff that extra assistance may be required).

The ride access pass requires some proof that the disabled person cannot queue. Disability living allowance and/or blue/orange badges are not accepted because they do not show what the condition is. The disability must mean that they “do not understand the concept of queuing, have difficulties with everyday social interaction, have a limited capacity to follow instruction or to understand others emotional feelings or expressions, and may become agitated or distressed having to wait for periods of time.”

Photo evidence is required, we took a passport.  At least one helper is essential, and has to be over the age of 14, or over 16 if the disabled person does not meet the height restriction. Up to 3 carers are allowed with the disabled person and can be rotated. Wheelchair users do not require a ride access pass.

Further info in the guide

Disability Access THORPEPARK

THORPEPARK‘s disability access makes it fair on all ride users by issuing  disabled ride user a card. When the card is presented at the exit a time is given that you can come back, as if you were queuing, but without having to physically stand in a queue. We saw this on the big rides at Disneyland Paris too.

Note we did not use their Disability help as we were given FastPasses so for further information on Disability access at THORPEPARK please see this post by My Life My Son My Way.

Disability Access Paultons Park

To avoid discrimination the entry price was the same for disabled as non-disabled visitors. To be fair I think a lot of Paultons Park  is the magic of Peppa Pig World, and a lot of that can be soaked up without even setting foot on a ride.

They have a Queue Assist Scheme, with which they DID accept a Disability Living Allowance letter and gave our disabled son a wrist band and card – which allowed up to 3 carers (note some rides had different rules on carer ratios and the disabled person always had to go on the ride). The card allowed him to go on each ride once, and was hole-punched as he did. This means that if he wanted to go on the same ride twice he had to then queue. We were fortunate that our son was okay with this but know how those with Autism could get quite obsessive about a ride and then have a meltdown for not being able to go back on as they are unable to queue. I do understand that lines need to be drawn though as many young children find it hard to queue without seeing someone go on the same ride more than once without the need for queuing.

Disability Access FlamingoLand

At Flamingoland there is a discounted admission price of £20 each, for a disabled person and their carer (total £40 instead of £60).

With proof of disability (DLA accepted, but photographic proof needed) a wrist band can be obtained, to allow riders to avoid the queue, and go through the exit (with a maximum of 2 carers). When we went we were told that if the disability was physically obvious, then they would not require further “proof”.

This is not a sponsored post. I was, however, given complimentary tickets in return for reviews on Pinkoddy’s blog. All thoughts and opinions are my own.