Our Megan

    

Recent pictures taken in 2014 when Megan was 14/15 years old

When I look at our Megan these days most of the time I see a happy, smiley fifteen year old girl content in herself.  She loves to dance, sing and dress up; her favourite song is “Lord of the Dance” amongst others!  She adores being the centre of attention and is very happy to entertain those around her.  She is chatty, funny and very smart!

Megan no longer lives with us.  Her home is now in a residential community and she constantly has two staff with her all day long.  Letting go of Megan was one of the hardest things we had to do. It was with heavy hearts we had to consider a residential setting, yet two years down the line the benefits to her (and us) are so clear. She has a quality of life we never dreamed she would have in those dark days of her being locked in her own world of fear and pain.  We as a family are in a much better place even though at times there is still the sadness that we can’t all be together, knowing she is happy makes it far easier to bear.

Megan was born in 1999; she was our first child and it was a huge shock to learn she had Down’s syndrome within a few minutes of her birth.  To us she was perfect though, just a baby, like a porcelain doll.  It was to be ENT problems that would prove to be a challenge for Megan.  However her hearing problems were not to be her only difficulties.

I first suspected Megan might be on the autistic spectrum when she was quite young probably around 4 years old.  She had great difficulties interacting with other children, often pulling their hair or pinching them.  She also engaged in routines, repetitive play and she struggled with transition; anything out of routine threw her.

Communication was a huge problem compounded by her hearing loss, though she did manage to learn makaton and was able to communicate through signs, gestures and some speech.  Sometimes the only way Megan could  communicate was through her behaviour which was extremely challenging at times.  When she was small it was easier to contain her outbursts or “meltdowns” however the older she got the harder it was to manage.

After many years of asking the experts, Megan was finally diagnosed with having an autism spectrum disorder (ASD) in 2009; she was nearly 9, a couple of years later she was also diagnosed as having ADHD (Attention Deficit Hyperactivity Disorder).

As Megan grew up her aggressive behaviour worsened; most of the time it was directed at myself in the form of hitting, pinching and biting but she was increasingly beginning to injure herself.  This self-injurious behaviour was intense.  She would hit and scratch her face until it was bleeding, she also pulled out her hair in clumps.  In 2008 it became obvious the reason for her severe self-injury was down to ear pain and she needed major surgery on her ears (mastoidectomy) in order to stop the pain. The surgery was successful and stopped this intense period of self-injury. However, Megan would return to using self-injurious behaviour in the coming years.

At around 11 years of age the situation at home drastically deteriorated, severe sensory issues had kicked in and she was unable to wear certain clothing, often ripping her clothes to shreds and stripping nearly constantly which was extremely difficult to cope with. Megan has probably ticked most boxes in terms of challenging behaviour. Although we loved our daughter dearly we knew we could not go on like this. Our other children deserved a normal life too.

Finding Megan a placement was quite a long process, difficult at times but thankfully she got a place in February 2013. The approach at Megan’s residential community is a holistic one; looking at the whole person and piecing the puzzle that is autism, together. I remember somebody years ago describing autism as being in a “constant state of agitation” which was so true for our Megan. Being in the right environment completely suited to her needs has made the world of difference. Although a difficult journey at times Megan’s transformation has been truly remarkable; she is now at peace.

Paul Isaacs Presentation at the DSA April 2015

Paul Issacs (Autism Oxford)

Parents told us at previous ASC/DS meetings for families they would really like to hear from someone about what it is like to live with autism, so we arranged for Paul Isaacs (Autism Oxford) to visit DSA and talk about his life.

Paul was very clear from the start that he could only talk about his personal experience and not speculate about the lives of others with the condition. Paul was eager to stress that no two people with Autism are the same. Paul described Autism as a ‘clustering of pre-existing conditions that are specific to an individual’. He suggested that the question parents needed to ask is not ‘What is Autism?’ but rather ‘What is Autism for your child?’

Here is what some parents had to say about the day:

“I thought that the event was interesting and am very pleased that I attended.  While our daughter has some issues, it is reassuring that the understanding of both Down’s syndrome and autism is developing at such a rate.  It helps me to have a bit more knowledge of what goes on in our daughter’s and our heads  Thank you for all your work in supporting families experiencing the dual diagnosis.  I do feel that we are “inbetweeners” and it’s nice to know that we are not alone!”

“On Saturday I attended the talk at the DSA by Paul Isaacs.  It was organised for parents of children with dual diagnosis – Down’s syndrome and Autism.  My son was diagnosed with ASC at the age of 3 and I have often felt we didn’t really belong in the Down’s camp or the ASC camp.  Actually we belong wherever we are comfortable and it happens to be at the DSA, who are doing such good work to bring us together and research the condition.  Paul’s speech was inspiring.  Considering what he has had to overcome, I almost forgot he had autism as he took us into his world and described his childhood and his form of autism so eloquently. I recognised my son in so much of what he said and that was very helpful.  For instance, Tom, who is non-verbal, touches people’s faces when greeting them.  Paul explained that he also used to do that in order to fully recognise the person in front of him as sight wasn’t enough.  An eye opening piece of information for me!  This was just one revelation of many and I came away with a greater understanding of my son’s behaviour.  The icing on the cake was to spend time with other parents of children with dual diagnosis and share our experiences and advice.”

“Another great day!  Information and ideas were swopped, an inspiring talk was given and a delicious lunch eaten. For me, a key value of these days is simply the bringing together of families who live with the pleasures and difficulties of children with a dual diagnosis.  It’s always so useful and supportive to hear of the creative ways in which challenges are met.  The highlight of the day was definitely the presentation by Paul Isaacs (from Autism Oxford) on his personal experience of living with ASC.  To hear such a fluent and well delivered talk from an individual who started life with severe challenges was quite inspiring. The insights he conveyed helped me, for the first time, to appreciate how the world looks and feels to an individual with ASC. There were many moments when the ‘penny dropped’ as Paul explained the reason why certain behaviours might happen, why some interventions help and some do not. It was powerful stuff and one of the most useful talks on ASC that I have ever heard. Thank you DSA for organising this and for your continued support for the children and adults, and their families, who live with dual diagnosis.”

In the afternoon, we asked parents whether there was any other information that would be useful to upload to DSA’s ASC/DS web pages The general feeling was the web pages contained all the information that parents needed before and after their child was given a diagnosis of ASC/DS.

We are always looking for suggestions about how we can improve the information we provide. If you have any suggestions for improving our ASC/DS web pages, you can send them to stuart.mills@downs-syndrome.org.uk

We also talked about DSA’s Having A Voice Project .  We discussed ways in which people with dual a diagnosis could be involved in the Project. One suggestion from a parent about how her son could be included was by making a film of him doing things he enjoys.

The next meeting for parents at DSA’s National Office is on 3 October 2015.  Julie Calveley of Interact will be talking about meeting the fundamental communication needs of people who have severe learning difficulties. Please go to our dedicated page for further information about the meeting

We will continue to seek funding to hold these meetings and are currently thinking about how we can most effectively support families to ensure they have the information and support they need. If you have any suggestions, you can send them to stuart.mills@downs-syndrome.org.uk

All in all we had a very constructive, informative day with great feedback from the parents who attended. Paul’s presentation can be downloaded from our website

The last word goes to Paul: ‘How I process information doesn’t define me’

To learn more about Paul and our previous ASC/DS meetings, please visit our website

Autism spectrum condition, complex needs and visual resources

Down's Syndrome Association

By Gillian Bird, DSA Training Services Manager

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Autism spectrum condition 

Thank you to the support groups who helped to advertise the ‘Understanding dual diagnosis of Down’s syndrome and autism spectrum condition’ training days for parents and professionals in Manchester on 30 April and 1 May’. The level of interest was so high that the event for professionals was fully booked within a week of being advertised. This will be the first DSA training event for professionals about dual diagnosis of Down’s syndrome and autism spectrum condition. We will be directly informing local practitioners who provide diagnostic and support services for children and their families, which is what our members have asked us to do.

We can run this training in other regions across England and Wales with similar regional funding. Please contact training@downs-syndrome.org.uk if you have an idea about how to fund this in your region. As with all…

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Ava

    Ava is 12 years old and has Down’s syndrome and an Autistic spectrum condition. She is in year 7 at a mainstream high school.

Last month my husband and I sat in a quiet office in a CAMHS building (Children and Adult Mental Health Service for those who haven’t spent as much time in their care as we have), being told that our girl; the girl who’s spent the last 6 months planning her birthday party sleep over; who gets giddy over Harry Styles; whose honesty around strangers makes my toes curl; has a diagnosis of being on the Autistic Spectrum.

As we walked back to the car my husband asked me how I was feeling. My answer was, ‘not surprised, but proud.’

In truth, we’d wondered out loud to ourselves on several occasions about the Autistic Spectrum Condition thing, especially as we’d watched Ava get more and more anxious over unexpected or persistent noise, noted how she checked several times a day, every day, every week, what we were doing that day, the next day, and where we were going on holiday in the summer. It hadn’t passed us by that she’d become overwhelmingly attached to a souvenir shop Union Flag, so much so that she couldn’t settle until she had it in her hands, and ironically, that she’d get anxious around people who had a disability that resulted in them displaying behaviours like rocking, or squealing. With our limited knowledge of ASC we’d always ultimately dismissed the possibility that it might be something Ava had, as we believed that people with Autism couldn’t read other people’s emotions, and Ava we’d decided, was very intuitive about how we were feeling.

When our community nurse, with some trepidation, initially mentioned ASC to me, I countered that I wasn’t sure Ava could have the condition based upon her emotional intelligence. ‘She can tell when I’m sad,’ I’d said. ‘She’ll ask me: Are you sad Mummy?’ Our nurse pointed out that she could be asking this question, repeatedly, exactly because she needed the emotions identifying for her, because she couldn’t recognise them for herself.

So, not surprised. But proud. Why proud? Because Ava was diagnosed with Down’s syndrome within hours of birth, by the time she was 8, she was in a wheelchair as a condition called Perthes Disease took hold of her hip joint and saw it crumble away to nothing, and then at 11 she was being diagnosed with ASC, but in spite of the things that many might think ‘bad luck’, or hard to cope with, our girl is no longer in a wheelchair, she gets the school bus with all the other kids to her mainstream high school each day; she’s making great progress in all her core subjects; she’s an amazing swimmer and will tell anyone who asks that she wants to be a swimming teacher when she’s ‘a lady’; she has a great group of friends, some with Down’s Syndrome, some without, that she enjoys spending time with; she goes to Guides and has been canoeing, wall climbing and camping with them (without Mum being there); and she’s happy!

So, what’s the point of us having a piece of paper that tells us Ava has ASC as well a Down’s syndrome then? Well, over the years we’ve grown used to Ava’s little quirks and so have developed effective strategies to cope with the negative behaviours that can result in her processing the world in a different way, but at her school, and at other organisations where our girl will want to spend her time, that piece of paper should help the people that come into contact with her to make allowances, to consider adjustments, to think as creatively as we do about how to motivate her, and how to make her feel safe. We’re also told that further down the line, when she might want to consider leaving home, that diagnosis will help us in finding the right support to make that huge transition in her life a success.

So as I watch Ava, her flag waving gently in one hand, asking a woman in the doctor’s waiting room, a woman we’ve never met before, why she’s got a spot on her chin, I think to myself, nothing’s changed, she is who she is, she’ll continue to strive, to achieve, to learn and to grow, but as she does all those things I’ll be more proud of her than ever before.

New Blog for Families

   

Welcome to the new Blog spot for families with a member with dual diagnosis Autism Spectrum Condition/Down’s syndrome (ASC/DS)

There will be a new blog piece every month. This is your blog so if you have ideas for, or want to write, a blog piece, please email stuart.mills@downs-syndrome.org.uk

We hope that this blog will be another tool for families to share their experiences and ideas.

ASC/DS web pages

We have been busy updating the ASC/DS section of our website so please take a look:

http://www.downs-syndrome.org.uk/for-families-and-carers/dual-diagnosis/

We have added a news section, where you can find out about an exciting new study, the EU-AIMS Longitudinal European Autism Project (LEAP). EU-AIMS is the largest single project focused on autism in the world.

DSA Journal articles written by parents whose children have dual diagnosis ASC/DS can now be downloaded at: http://www.downs-syndrome.org.uk/for-families-and-carers/dual-diagnosis/dsa-journal-articles-on-dual-diagnosis/

Meetings for families

The next meeting for families will be on Sunday 18 April 2015 at the DSA’s National Office where Paul Isaacs from Autism Oxford will be talking about what it is like to have a diagnosis of ASC. If you have any questions about and/or would like to attend the meeting, please email stuart.mills@downs-syndrome.org.uk

Find out more about Paul at: http://www.autismoxford.org.uk/index.php/profiles/paul-isaacs

‘Autism Characteristics and Behavioural Disturbances in ∼ 500 Children with Down’s Syndrome in England and Wales’

Some of you may have been at our last meeting for parents where Dr Georgina Warner presented some of the findings from her research project. Dr Warner’s research suggests that the prevalence of dual diagnosis ASC/DS may be higher than previously thought. The research also shows that those with ASC/DS have an atypical profile which may be why parents find it difficult to get a diagnosis. We hope to use Dr Warner’s research to raise awareness of ASC/DS and to alter thinking about how this group of children present. Dr Warner and her supervisor Professor Pat Howlin are currently writing a parent friendly article about the research project. The article will appear on the news section of our ASC/DS web pages so remember to keep an eye on our website.

We look forward to hearing from you soon.

Stuart Mills – Information Officer