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Parenting a teenager with autism – what Stephen is teaching me!

avril@offwego.ie (Avril) — Sun, 12 Feb 2012 12:58:42 +0000

Parenting is a tricky subject at the best of times, with constant ups and downs. The toddler and teenage years seem to be particular highlights for testing of parenting skills! Stephen (who has a rare chromosomal disorder and autism spectrum disorder - ASD) is the eldest of my three children, so I haven’t done parenting a teenager before. There is no doubt that Stephen’s autism and intellectual disability add extra challenges, but sometimes I am so fixated on his disability that I forget that Stephen is growing up and experiences many of the same things as a "normal" teenager.

Sensory Processing Disorder

One the things that every parent of child with ASD needs to know is that puberty can set off new sensory triggers. Like Stephen many children with ASD have sensory processing disorder, this means Stephen’s senses do not ‘work together’ the same as ours. Stephen feels, sees, hears, tastes in a different way than we do. This also affects his movement and balance. All areas of life are impacted from eating (only eats certain textures), to sleeping (he needs deep compression hug to help relax him at bedtime), to how he learns (he needs a quiet corner). He cannot ‘screen out’ noise like we do and gets overwhelmed in busy noisy environments. From what we see everyday, there is no doubt that certain noises cause Stephen distress and I think some form of pain. Examples of this would be a baby crying, a dentist’s drill, a hand dryer in a public toilet and many more.

Since we became aware that Stephen’s senses are different than ours, it has helped us understand some of his reactions. And we have tried to support him with preparation and avoidance of certain trigger noises. It had settled down to a certain degree and he could manage many new environments well. However puberty and all those hormones have sent poor Stephen’s system into sensory overload again. Things that we thought he had got used to are suddenly causing him distress. E.g he has been pretty good at getting his haircut in the last few years and had gotten used to the noise of the clippers and noise of scissors. Suddenly it is like the noise is hurting him and he cannot tolerate near his head at all. From my experience it seems sensory processing disorder spikes during toddler and puberty/pre-puberty years. Stephen is 14 and I know I have a few years to go with teenage years but I am looking forward to (hoping) this sensory stuff settling down again in the future!

Sleep

Stephen has never been a good sleeper but recently he is waking at various times during the night and early in the morning. From talking to other parents and from what I have read, we are not alone (I know it does not fix it but it really helps to know others are experiencing the same thing) it seems many young people with ASD find it difficult to move smoothly through the cycle of ‘normal’ sleep. Needless to say, lack of quality sleep affects not just Stephen, but the whole family.

I was chatting to one of my neighbours about sleep or lack of it, when it struck me that I need to think about what ‘normal’ teenagers do and that all of Stephen’s behaviours are not necessarily linked to his disability. My neighbour was telling me about the amount of food her teenagers were eating and it got me thinking that maybe Stephen’s waking up might be that he is hungry.

Stephen has always been a ‘picky’ eater and he does not like eating. Anyway I started giving him some extra snacks during the day and it seems to be helping. The other thing I have used is melatonin and that seems to really help settle his sleep pattern.

Meltdowns

I was also telling my neighbour about Stephen having complete meltdowns and that in many cases I could not understand what was upsetting him. I was busy analysing that it must be Stephen’s frustration because he cannot express himself with words. This may very well be a cause, but my neighbour reassured me that many ‘normal’ teenagers also have meltdowns over what seems like nothing.

Lessons

I am learning that yes having a teenage child with ASD does pose lots of challenges, but so does having any teenager. Stephen is teaching me about patience, understanding and active listening. Stephen has a great sense of humour and he also reminds me of the importance of laughing and keeping things in perspective.

On the positive side of puberty, I have to share with you that Stephen has acquired more language from age 12 to 13, than at any other stage of his life!

Best wishes as always,
Avril

Behaviour that challenges, not challenging behaviour

avril@offwego.ie (Avril) — Sun, 20 Nov 2011 21:09:43 +0000

I was honoured to be invited to speak at a super conference in Birmingham on 2nd November hosted by the UK’s National Autistic Society and the Sensory Integration Network. We know that many people who have autism and an intellectual disability also have sensory integration difficulties. The conference was an in-depth look at all aspects including; the latest scientific research, the biology and brain imaging now available, and practical ideas and approaches to help with learning and everyday life.

Sensory integration disorder or sensory processing disorder is where the senses (touch, feel, taste, smell, hearing, movement and balance) of your body do not work together as they should. Here is a simple video to explain it.

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As well as communication, sensory integration disorder is thing that affects our son Stephen’s life and our family’s life the most. Over the years (Stephen is now 13) I have found it essential to try to understand Stephen and where he is coming from. And I am learning everyday.

The organisers of this conference are top class. The National Autistic Society is the leading UK charity for people with autism and their families. They provide information, support and services and campaign for a better world for people with autism. I especially like their logo of Accept difference. Not indifference.

Sensory Integration Network UK and Ireland is a voluntary organisation of professionals working together to promote education, good practice and research into the theory and practice of sensory integration, specifically the work of A. Jean Ayres who was the first occupational therapist to research and come up with specific therapies.

All the speakers were excellent and some of the conference is available at this link.

Two of my favourites are the presentations by Steve McGuinness , NAS Trustee, Councillor and Autism Consultant and Julia Dyer Physiotherapist and Lecturer.

Steve has autism and gave a fascinating insight into how senses are different than ours. I was interested in his suggestion around the words 'challenging behaviour'. Our son Stephen has this label attached to him. Steve suggested we change the order of the words to ‘behaviour that challenges’. In other words, there is a reason for the behaviour and 'we' (society) are challenged to understand it. We need to listen, learn and understand. He used this video to explain sensory integration difficulties.

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Julia talked about movement difficulties and the affect it can have on social skills, self esteem and friendship building. She brought three members of the audience to the front and asked them to button a man’s shirt. Two of them had gloves on to demonstrate what it is like when you have fine motor difficulties. (This is the case for many people with autism and intellectual disability) and one had no gloves on. The two with gloves on (ski gloves and woolly gloves) struggled to complete task. Julia was trying to illustrate that you need all your senses to carry out everyday coordination tasks. Later she spoke about how the audience member felt after failing. It was very powerful to put ourselves in the shoes of someone with a disability and to appreciate the impact it has on your self esteem.

Videos of Steve and Julia’s presentations are available here.

The other presenter I have to mention is Ian Jordan. He showed how sight/visual processing is vital for the other parts of our sensory systems. I heard about synaesthesia and metamorphopsia for the first time. Ian connected with me because at home, we would often say that our Stephen definitely sees things differently than we do. Ian showed videos and explained how timing and mapping of vision helps the overall functioning of all senses. We saw how when vision is corrected, things like co-ordination and speech improve – I found it really interesting. For more information see www.jordanseyes.com

Well done to all those involved in organising this event. It would be brilliant if we could have a similar event in Ireland to raise awareness about sensory integration disorder and that it is good to be different!

Best wishes always,
Avril

Facing the Future Individualisation event great success

avril@offwego.ie (Avril) — Wed, 02 Nov 2011 07:37:59 +0000

Our Facing the Future: Individualisation event last week went really well. Kathryn, Emer and I were nervous as we don’t organise events like this on regular basis! We were delighted with the attendance of more than 230 people.

Minister of State Kathleen Lynch introduced our evening, giving us the government’s perspective on how things will change in the disability sector. We then had a very interesting presentation from Bairbre Nic Aongusa Director of the Office of Disability and Mental Health, outlining planned reform of disability services. The stars of our evening were family members, Seamus Greene, Nora Johnston, Catherine Finneran, Thecla Farrell and our self advocate Lisa McNabb, accompanied by her key worker Theresa Nolan. They shared their stories and inspired us of how they have ‘individualised’ the services they receive.

For more information on our evening, please see disabilityinfo.ie. The Irish government is currently looking for submissions on the future of disability policy in Ireland, through a survey on the night, we gathered valuable research and feedback which we are compiling into a submission for government. See http://www.d ohc.ie/consultations/open/disability_policy_review/

We will be posting our submission on disabilityinfo.ie

We would like to thank everyone involved in our evening and especially Lily O’Brien Chocolates who provided a box of chocolates for everyone in the audience! We look forward to seeing you at our next event.

Best wishes as always,
Avril

Facing the Future 2 - Individualisation

avril@offwego.ie (Avril) — Mon, 19 Sep 2011 18:02:41 +0000

I am delighted to be working with my two friends Emer and Kathryn to organise another information evening for people with disabilities, their families and for professionals working in the disability sector. This time it is on ‘Individualisation’, venue: the Radisson Blu Hotel, Limerick on 17 October 7:30pm.

The Minister of State for Disability, Kathleen Lynch will do the opening address. She will be followed by Bairbre Nic Aongusa. Bairbre is the Director of the Office of Disability and Mental Health. The key note speakers are family members and a self advocate, who share their stories on how they are doing things differently.

The reason it is important to know about this, is that the Irish government is changing its policy in the disability sector towards this new model of ‘individualisation’. At the moment, the government takes tax payers money and gives funding to agencies called service providers to provide services and supports to people with disabilities and families. e.g. our son Stephen (Stephen has a rare chromosomal disorder and autism) needs therapy services (physiotherapy to help him walk, occupational therapy to help with how he uses his hands and to identify what equipment he needs, as well as speech and language therapy to help him communicate). Also our family receives respite services, this means Stephen is taken care of for a few days per month to give us a break. The money needed to provide these respite and therapy services is given to our local service provider. We have no influence over how much it is or who gets it. We do not know if Stephen’s care represents €1,000, €10,000 or €100,000 of the service providers’ overall budget. In line with international best practice, our government is planning to change to a system of ‘individualisation’ where families and people with disabilities will have a say in where funding goes.

However, there is much more to this than just money. As a result of the system and of our culture, traditionally, people with disabilities and their families took what was offered to them by the state and felt grateful for it. As a Mum, I know this feeling very well.

As part of the organising of this event we have met some truly inspirational people. It has been a journey of learning for me, a growing awareness of how in many ways I was letting the words ‘disability’ define my son Stephen’s life. Stephen is not ‘lesser than’, he is different. This is also about accepting the individual as themselves, and as a member of their community. That people with disabilities are individuals with gifts, hopes and dreams like everyone else.

Stephen is part of a community and his daily life should reflect this. Stephen has lots to give and I need to let this happen. I am very protective of Stephen (actually over-protective is more correct!) and I have to allow people into Stephen’s life. This is not easy, as I am used to people being paid to spend time with Stephen. This is a mindset change for me and also for our community. We need our community to welcome Stephen, for who he is and make him part of community life.

The main speakers of our evening on 17th October will share their stories of how instead of just accepting what was given; they looked at the gifts, hopes and dreams of the individual with a disability and put that as the main focus. I am sure they will inspire you as they have me.

Click here for more info and to register for the event. Please register early as our previous event booked out over 2 weeks in advance.

Please could you spread the word about our event, we look forward to welcoming you on the night!

Best wishes as always,
Avril

Challenging Times: ensuring values support ordinary lives - Exploring Family and Person Centered approaches

avril@offwego.ie (Avril) — Wed, 13 Jul 2011 07:00:17 +0000

I recently attended this excellent conference in Maynooth Co Kildare. It was organised and run by the National Federation of Voluntary Bodies (a national umbrella organisation for voluntary/non-statutory agencies who provide direct services to people with intellectual disability in Ireland) The two key things that struck me are in the title of the conference. Firstly, people with disabilities want ‘ordinary lives’ and surely our society can provide this? Secondly, the word ‘values’, sometimes we become disconnected with what is really important. It is essential that underlying everything is a common set of beliefs about doing what is right.

The theme of the conference was how in a time of economic crisis can service providers deliver better quality services to people with intellectual disabilities. The keynote speakers were Carl Dunst, John O’Brien and Gerard Quinn, all renowned international experts in the field of disability. You can see their presentations at http://www.fedvol.ie/Conferences_and_Presentations/Default.1689.html

One of the best speakers of the day for me was Kathleen Gittens. Kathleen has an intellectual disability and is Chairperson of Seasamh. This is a group from the South East area of Ireland run by and for people with intellectual disabilities. Kathleen told us about how with training she and her colleagues in Seasamh now have the confidence to have their say in decision making by service providers. ‘Nothing about us, without us’ were her key words as she explained how people with intellectual disabilities want ‘ordinary lives’ (nice home, friends, work, social life, education, play sport etc).

John O’Brien is an inspirational speaker. He spoke about with financial resources reducing, how we need to look to families, communities and people with disabilities and what they can all contribute. He uses the word ‘allies’ to describe the role of services providers. Service providers are not about buildings, but instead about becoming ‘allies’ to the family and links to community and services. He did not underestimate the challenge we have ahead of us and said it is important to understand that change is difficult. I liked his analogy of going across a bridge together, not knowing exactly what is on the other side but families, services providers, people with disabilities and community, doing it together.

One of the other major discussion points of the day was how can service providers provide better quality services. Our government here in Ireland has stated that they are going to change how funding is given to the disability sector. At the moment, all funding is given to the service providers and they decide how it is spent. In the future, funding will be allocated based on individualised basis and the person with a disability and their family will have influence over how it is spent. The Genio Trust is helping make this happen and we heard inspirational stories of examples of people with intellectual disabilities moving out of institution settings and becoming active members of their local communities.

On a personal level, I learnt a lot and I believe this change in policy towards individualised budgets gives me confidence for better services in the future for our son Stephen. There are huge challenges to implementing this, but I have no doubt that it is going to happen, not because it costs less but because it is the right thing to do. Values are important and all services ensure equal rights and ordinary lives for people with intellectual disabilities. Supplying services in the disability sector is not about walls and buildings; it is about providing supports where members of staff become allies for people with intellectual disabilities and their families.

Best wishes as always,
Avril

Tips to support communication for individuals with ASD

avril@offwego.ie (Avril) — Wed, 18 May 2011 09:10:04 +0000

I want to let you know about some excellent training that I recently attended. It was given by Claire Smyton and Leah McKeown from the Centre for Autism at Middletown in Co. Armagh. Please see https://www.middletownautism.com for more information. The two sessions I went to covered communication/coping with anxiety and promoting positive behaviour. The staff from the centre go all over Ireland training parents and professionals, if they are in your area, make sure to check it out as the training is really good and free of charge!

See below a summary of some of what I learnt. Training is great because there are things you need to be reminded of time and time again and you always learn something new. I also met some wonderful Mums and other professionals during coffee and lunch; it is so good to connect with others on a similar ‘journey’. I came away with a better sense of perspective, energy and confidence to hopefully help my Stephen with his anxiety and meltdowns.

Tips to help communication with individuals with ASD:

Keep your language simple. Use key words to give commands, comment and question, in other words, Say less! Go slow! Show!
Use pictures/visuals. Individuals with ASD learn using pictures. Make pictures using photos, symbols, cut-outs and use them for schedules, giving choice and general communication. Always have paper and pen with you and use pictures to explain what is happening.
Give the person time to process information, use the 10 second rule. Do not repeat what you said, after 10 seconds clarify what you said and use objects/pictures/symbols to explain what you have said.
Individuals with ASD often have higher heart beat rates even when they are in resting/calm states, they live at a higher level of stress/anxiety all the time.
Reduce visual and auditory distraction where possible. Individuals with ASD find it difficult to regulate these and their other senses and they can get overloaded / overwhelmed very easily.
Individuals with ASD do not learn social rules by watching others, you have to make things very clear; use first-then communication (e.g. first bath, then bedtime), everything you do has start-middle-finish, when you say No! mean it!, prepare for change using pictures.
Use clear pictures, lots of structure, be consistent and calm (last one is a bit of a struggle for me!)
Behaviour is communication, what might look like 'bad behaviour' is the individual trying to tell you something.
Be aware and understanding that individuals with ASD think differently, they know of only one way to do something, they cannot adjust their thinking and have difficulty asking for help when things are not going their way. This is the way they are, it is not their fault that they cannot be reasonable or think of others, it is part of who they are.
This quote helped me - From Wing 1996 p87 ‘It is essential to understand the nature of autistic conditions. People with these disorders because of their social impairments, cannot meet you half way. You have to make an imaginative leap into their world and try to see things from their point of view'

Best wishes always,
Avril

Would you like shopping if it felt like this?

avril@offwego.ie (Avril) — Wed, 06 Apr 2011 11:39:49 +0000

April is Autism Awareness month (April 2nd was world autism awareness day). I want to raise awareness about one particular aspect of autism – sensory processing disorder. This affects everyone with autism as well as many with other disabilities. It is ‘invisible’; you will not know it straight off. It means seeing, feeling, hearing touching and tasting in a different way. I want to show you a video that my husband Robert made to help explain what it might be like for Stephen to go shopping, the type of sensory overload he might experience and why he often finds it stressful. Please take a look, it takes about 30 seconds, and is probably better to watch in full screen and watch out it is loud:

{qtube vid:=dBIy93yLxe4 w:=640 h:=500}

Autism is a spectrum disorder so it can affect you in a very mild way, all the way to severe. And given that we are all human beings, every individual with autism is different. Most individuals with autism have difficulties in the following areas; social emotional, language, communication and using their imagination. We know that many super intelligent/genius individuals also have autism. We also know that autism can mean that the person has complex needs and needs constant support. This is the case for our son Stephen.

As mentioned above, one aspect of autism that affects everyone on the spectrum whether mild or severe and that is something called sensory processing disorder. So for Stephen this means his senses do not ‘integrate’ together as they do for the rest of us. As you read this, you can suppress noises around you; you can feel the chair/floor under you; and your eyes give you visual messages as to where you are. For Stephen, he cannot discriminate noises effectively, some colours move for him, and he feels the world as if he has rubber gloves on. As you can imagine, going to a busy supermarket or going for a haircut can be stressful and overwhelming for him. Often Stephen’s way of communicating that he is struggling (meltdown/temper tantrum) looks like bad behaviour. Stephen has limited speech and it is difficult for him to tell us what is bothering him.

At least 1% of our population has autism spectrum disorder. This number taken together with their families, friends and professionals working directly in the field of autism means at least 5% of the general population know/work directly with an individual with autism. This is not some strange rare disability related condition; it impacts everyone with or without autism across public health, social, equality, human rights, educational, political, economic, tax, and environmental policies. But most of all it is about a person and a family living in their local community.

There is someone in your neighbourhood/community with autism. Please don’t be scared, their behaviour may look ‘weird’ but it is because they are different. Please do say ‘hello’. Next time you see them flapping their hands while out and about, it may be because they have just heard a noise that possibly you did not even hear – it could be the sound of a drill or an engine. Please do show kindness and understanding to the family/carer. The sibling may have just had their Lego creation destroyed; the Mum may have just come from another speech therapy appointment or school meeting to discuss behaviour problems.

There is a place for us all in this world and we are all here for a reason. Please reach out your hand to individuals with all disabilities and their families and give them your help and support.

Best wishes always,
Avril

Off We Go! books launched in the US and Canada

avril@offwego.ie (Avril) — Mon, 07 Mar 2011 14:23:28 +0000

I am very excited to let you know that my Off We Go! series has recently launched in the US and Canada with my US publishing partner Woodbine House Publishing. It has been my pleasure to get to know and work with the team at Woodbine House.

Woodbine House Publishing is a leading specialist publisher of books in the disability sector. At ground level they are the known supplier of quality trusted resources. You will see on their website that they are far more than just publishers. Most of their employees have a personal connection to someone with special needs and this is shown in their commitment and dedication to providing resources that really connect with parents and professionals.

It has been a great experience working with Woodbine on localising the books – Yes we all speak English but you would be amazed with the amount of differences in the words we use here in Ireland and those used in the US! Already we have had some super reviews.

What is most important for me is the idea of families supporting each other not only in their local communities but also across the world. That a little book that I created to help my son Stephen, is now reaching all the way across the Atlantic and further and helping other kids access everyday activities. And that for me is what it is all about – connecting and helping each other.

Best wishes as always,
Avril

When diagnosis raises more questions than answers

avril@offwego.ie (Avril) — Sun, 20 Feb 2011 15:50:55 +0000

In my previous blog entries; Undiagnosed for 12 Years - now Array Tests Give us a Clue and Rare Chromosomal Disorders, more common than you might think, I shared some of my story of how after 13 years of questions about a diagnosis our son Stephen, we have finally got some answers about the underlying cause – we now know that Stephen is missing part of the long arm of his 5th chromosome. However, we and the doctors and scientists have a long way to go to really understand rare chromosomal disorders.

We recently went to meet the doctors to understand what this deletion on the 5th chromosome means. After all the years of no diagnosis, I was expecting to hear that Stephen has ‘xxxx’ syndrome and here is a family you can contact who has a child with the same syndrome. However that was not the case, what the doctors told us was that Stephen is unique! They cannot find any other child/adult not only in Ireland, but also across the world, with the same condition. The doctors explained that in fact they know very little. As yet they do not know exactly what each part of every chromosome does. We have now given our consent to be involved in research with doctors and scientists that will hopefully help Stephen and other children in the future.

We are doing this with Professor Andrew Green and his team at the National Centre for Medical Genetics in Dublin Ireland www.genetics.ie , who are in turn linked to DECIPHER. DECIPHER - the Database of Chromosomal Imbalance and Phenotype in Humans is a network of academic centres of Clinical Genetics. It was established in 2004 to catalogue submicroscopic structural duplications, deletions and rearrangements in the genome - called copy number variants (CNVs). For more information see http://decipher.sanger.ac.uk

The other worry for us was the possibility that Stephen’s condition could in some way be hereditary. In fact originally when I heard the word ‘genetic condition’, I immediately assumed that it would mean that it would affect any other children we might have. Genetics is a complicated subject and every diagnosis/syndrome carries its own characteristics and many genetic conditions do have a hereditary aspect. Everyone carries a certain risk of having a baby with a genetic disorder. In our case, we have now got confirmation that the likelihood of us having another child with the same condition is very small indeed and Stephen’s diagnosis has no implications for his siblings or for their future children.

We hope that we can help in the science and research for rare conditions like Stephen’s. As children like Stephen live long healthy lives, it is not just doctors and scientists that need to gather research and information but also the disability service providers, teachers and our whole society/community. Children like Stephen learn differently and are gifted and clever in their own way and we need to raise awareness about that.

Best wishes as always,
Avril

Expert legal and financial advice important for families with special needs

avril@offwego.ie (Avril) — Sun, 06 Feb 2011 17:46:01 +0000

We had a very successful evening last week at our Facing the Future event. The fact that the event was booked out two weeks before hand, and that we had a waiting list of over 50 really shows that families need information and support in this area.

It was a free information evening giving Legal and Financial Advice on Disability held in the Radisson Hotel, Limerick on Wednesday 26th January. The 150 people who attended received critical up-to-date legal and financial information on disability from keynote speakers from Inclusion Ireland, Sweeney McGann Solicitors, HDS Partnership and Bank of Ireland.

I was proud and delighted to be involved as one of the organisers. Thinking about the future and what might happen when we die is a difficult subject for any parent and so we often put off making wills and other plans. From what we learnt at our seminar last week, it is essential that we do make plans and think about what who will take care of our loved ones and how they will do it. There is no ‘one solution fits all’ every family situation is different. The good news is that wherever you are there are experts available to help you. Just ask at your local solicitors’ office or citizen’s information and they will direct you.

As well as the importance of making a will, we learnt about the tax implications and that tax does matter. With the right advice, you can make plans that make the best use of tax allowances available.

We also heard that people with intellectual disabilities do not have the same rights to make decisions as other people. In fact, shockingly in Ireland people with intellectual disabilities come under the Lunacy Act of 1871. Inclusion Ireland asked us to support them in their in their petition to change the law.

This law and lack of rights also affects things like a person’s choice to open a bank account. Bank of Ireland highlighted the importance of their duty of care and the fact that they really want to help families.

One of the other goals of the evening was to remind families, especially Mums and Dads, about the importance of taking care of yourself. So as a surprise we had a free head massage and energy balancing treatment for all who attended!

For more information about the event including pictures of the event and the presentations from the evening see here on disabilityinfo.ie.

Best wishes as always,
Avril

Get Off We Go! iPhone/iPad App for Free

avril@offwego.ie (Avril) — Wed, 02 Feb 2011 21:26:05 +0000

We have a number of promo codes for our iPhone & iPad apps to give away. To get one, all you need to do is check out our free online interactive Off We Go! 'Going to the Hairdresser' app and send us feedback (using the link provided at the top of the online interactive app).

The first 10 people to send us feedback will get a free promo code to the app they specify on the feedback form.

Best wishes,
Avril

Facing the Future - legal and financial disability information evening

avril@offwego.ie (Avril) — Wed, 12 Jan 2011 19:00:59 +0000

I am delighted to be working with three other parents of individuals with special needs to organise a disability information evening on legal and financial advice on 26th January 2011 in Limerick. Many people have not put wills etc. in place and worry a lot about the future. It is a hard subject to think about, but wherever you are please do find the experts and put plans in place.

We are a group of four mums of individuals with special needs and disabilities in the Mid-West area of Ireland. We were having a cup of tea together during the summer of 2010 and we were chatting about the future for our children and the extra things we need to think about because our children have disabilities. Realising that we didn't know enough to plan properly for the future, we suspected other families were in the same situation. So we decided to organise an information evening on legal and financial issues that impact families like ours.

This free event takes place at the Radisson Hotel, Ennis Road, Limerick on Wednesday, 26th January at 7.30pm click here to find out more. Up-to-date information about the event as well as registration facilities can be found on www.disabilityinfo.ie We have had such a phenomenal reaction, that we have had to close formal registration today, but if you are interested please let us know, as we have a waiting list and it looks like we may need to run the event a second time!

Our children are a mix of ages and wide range of and levels of disabilities (intellectual/physical/sensory/hearing impairment/speech delay/autism). We represent various family support organisations in the Mid-West (St.Vincents Lisnagry Association, Clare Federation for People with Special Needs, ConnectAbilities). Our aim is to bring together existing support groups to provide information on general issues that affect us all.

At the information evening, we will have presentations from Inclusion Ireland (largest organisation working to promote the rights of people with an intellectual disability in Ireland), Sweeney McGann Solicitors, Bank of Ireland and HDS Partners covering the following topics:

• Guardianship, Ward of Court and the Mental Capacity Bill
• Wills and Trusts - the importance of making a will, estate planning, the appointment of Guardians and Enduring Powers of Attorney (living wills)
• Tax, Protecting Benefits and Inheritance
• Banking Administration and Setting up Bank Accounts

We are hoping this event might be the first of many!
Best wishes as always,
Avril

Going to get a haircut - prepare using sounds and pictures with free fun learning tool

avril@offwego.ie (Avril) — Sun, 09 Jan 2011 12:58:18 +0000

As this is my first blog post of 2011, I would like to wish you a very happy new year and I hope 2011 is a good one for you.

I am delighted to let you know that I now have an interactive version of ‘Going to the Hairdresser’ available free at http://www.offwego.ie/interactive. It can be used on your home PC or school interactive whiteboard to help children learn about the experience of going for a haircut. This can be a very scary experience for young children and children with special needs. I know from helping my son Stephen (who has a severe intellectual disability) that he is sensitive to sounds. So I have added sounds to the pictures from my Going to the Hairdresser book. I need your help and advice - please could you let me know what you think of it and how I can improve it.

I have found that the more I prepare Stephen, the better he can manage a new experience. Like many children, Stephen learns more easily with pictures than words. So I prepare him using pictures in a sequence so that he knows what is going to happen (this is what started my Off We Go! series of books). However, I have also found that sounds can cause Stephen to get upset and anxious. Stephen has a sensory integration disorder (www.sensory-processing-disorder.com for full explanation) which means that his senses work differently. He cannot ‘push away’ sounds and he hears sounds more loudly than we do. Think of what it is like when you open the door of a barbers/hairdressers salon and hear the sounds of clippers, scissors, hairdryers, telephone all going on at the same time. I found that by preparing Stephen with the sounds in advance in the safety of our home, he was less scared and anxious. And it is from this, that I developed the interactive version of my ‘Going to the Hairdresser’ book.

As well as helping Stephen I found this preparation helped all my children, particularly Rachel - see photo.

Tips on going for a haircut:

Find an understanding barber/hairdresser: Ask around and you will find someone who wants to help and is used to working with kids.

Prepare using pictures: Take photos of the barber/hairdressing salon and make a home made book of the sequence of what will happen. You may find it useful to look at my Off We Go! Going to the Hairdresser as a guide. Go for a visit to the barbers/hairdressers salon without actually getting a haircut.

Practice at home: I found Stephen hated the feel of the cape/gown that is put over him when getting his hair cut. Borrow one in advance if you can and play out getting a haircut at home. Use your hairdryer, gel, mousse and let your child do your hair! It helped Stephen to turn on/off the clippers that is used for cutting boys’ hair. He was reassured to know that it can be turned off.

Praise: Reward and reassure as you go, Stephen finds the waiting part hard so I might bring a new book/magazine for him to have while we wait. Better still if you can organise an appointment time first thing in the morning or at a time when the salon is not busy. Take time at the end to look in the mirror and let them see how gorgeous they look!

Distract: Bring along a favourite toy or portable dvd player, that can help if your child gets upset.

I look forward to hearing your feedback on Off We Go! Going to the Hairdresser interactive.

Best wishes as always,
Avril

European Autism Action 2010 Conference Dublin 29th Nov 2010

avril@offwego.ie (Avril) — Wed, 01 Dec 2010 13:54:13 +0000

I attended this conference in Dublin earlier this week, representing Inclusion Ireland. Despite the snowy bitter cold weather, there was a good attendance. It was to launch a 10 year European Strategy on Autism. A number of stakeholders have come together to draft a report, recommending amongst other things:

• The importance of individuals on the autistic spectrum, families and professionals working together in advocacy groups
• The need to raise awareness of autism by making information available
• The need for more research to get accurate figures on prevalence and to gain a better understanding of what interventions work

It was my first time to hear autism addressed as a public health issue as opposed to just a disability issue. Sir Christopher Bell (Vice Chairman of Autistica and Patron of Research Autism) presented research to show that at least 1% of the population have autism spectrum disorder. When you count in families and professionals, you are looking at 5% of our population being directly impacted by a person with autism. The numbers now show that autism and intellectual disability affects everyone going across health, education, social, economic and justice areas, right from European and government levels all the way down to our local communities.

A number of speakers presented research in areas of autism that they are working on. Ann Le Couteur, Professor of Child & Adolescent Psychiatry at Newcastle University highlighted the need for resources across the lifespan particularly for transition into adulthood and retirement (not just early intervention) and the need for on-going training for parents (as a Mum I have never got specialist training) and professionals. She talked about the need to question the current methods used to diagnose and also the need to question the use of medication.

Dr Karen Guldberg and Dr Kirstin Wittemeyer gave an interesting workshop on their research on educational interventions for children with autism at the University of Birmingham. They concluded that there is no single intervention that will work for all children. It has to be needs led by the individual on how autism is impacting them in a particular learning situation. Good practice when working with someone with autism includes:

• Structure
• Flexibility
• Use of visuals
• Enabling environment
• Child and family centred
• Partnership work

They highlighted a number of useful resources for raising awareness and good practice:

• http://nationalstrategies.standards.dcsf.gov.uk/idp
this is training information on the inclusion development programme on supporting pupils on the autistic spectrum.
• http://www.ncse.ie/research/researchreports.asp
you can download the recent report on the International Review of the Literature of Evidence of Best Practice Provision in the Education of Persons with Autistic Spectrum Disorders from the Autism Centre for Education and Research, University of Birmingham.

The best presenter of the day was Jamie Reilly, a young man with autism. After listening to academics talking about research he brought us back to reality. His brother introduced him giving some background to explain that Jamie did not talk until he was 5, attended a special school and labelled with all sorts of problems. Jamie then came to the podium to speak – handsome, intelligent, humble, 4th year student of science at Trinity College Dublin. He shared his life story with us. I know my circumstance with our son Stephen is completely different, but I found it helpful when Jamie explained why he loved repeating certain cartoons sounds and actions and how it calmed him. (Stephen does this all the time). We were all in tears as Jamie paid tribute to his friends and family and most of all, his mother who in his words ‘never stopped believing in him’. He received a standing ovation; Jamie is truly an inspiration to us all.

The report that was launched at the conference is ambitious and requires the co-operation, effort and enterprise of many agencies and all parts of society. In the words from the executive summary ‘We can decide to stop neglecting the needs of people with ASD (Autistic Spectrum Disorder), and start to provide adequate opportunities so they can become included within, and become active contributors to society. We can expect a range of economic, social and personal benefits, if we do so. But these are not the most compelling reasons for action. We should act because it is the right thing to do.’

Best wishes as always,
Avril

Going to the Dentist - tips for a successful trip

avril@offwego.ie (Avril) — Sun, 21 Nov 2010 17:58:47 +0000

Taking care of oral health and teeth is important for all children, but even more so for children with special needs. Yet with all the doctors and therapists, especially when children are young, often dental visits are put to one side. This was the case for us where we had so many other appointments going on for Stephen (our son with a rare chromosomal disorder) that I found it hard to get to the dentist as well. It was also the case that I knew it was going to be difficult and stressful. We started in a place where I could barely get Stephen into the waiting room, to now many years later he can manage to sit up on the dentist’s chair for a check up. We still have our moments, but here are some of the things that have worked for us:

Knowing the environment and what could trigger stress:
Organise to visit the dentist yourself before going with your child. Find out where you will be parking, how long the walk is, where the nearest toilet is and anything that you can see will help/hinder your child. I know that Stephen is sensitive to noise, so we sit in the waiting area furthest from the dentists’ surgery, to try and avoid hearing the sound of the drill. We also use headphones with music to help Stephen stay calm. I know a friend of mine found out that there were fish (in a tank!) in the waiting area and she knew this would help her child to relax, so she focussed on visiting the fish as opposed to visiting the dentist.

Being prepared:
For all children if they know what is happening, they will cope better. This is certainly the case for Stephen and children on the autistic spectrum. Stephen learns and communicates through pictures so we found that when we prepared him using pictures as to what happens at the dentist, he was not so scared. This is what inspired me to write the Going to the Dentist book, part of the Off We Go series of books. And now we have the Going to the Dentist book available as an iPhone/iPad app. The iPad app has a sound zone to help prepare not just visually, but also for the sounds they will hear at the dentist. We know many children with autism hear sounds differently and more loudly (sensory integration disorder) than we do. Can you imagine how scary it must be to hear the sound of the dentists’ drill four times louder than we do? We found that by letting Stephen hear the sounds of a drill, suction etc. in the safety of our home before he went to the dentist, he was more used to them. We also got a mask, the dentists’ gloves, and an electric toothbrush and ‘played’ going to the dentist at home.

Something to distract:
Even with all the preparation in the world, sometimes things go wrong! Distractions are vital. Bring along a favourite toy, music or book. We bring Stephen’s portable DVD player with headphones.

Reward:
Have a reward ready and lots of praise for good behaviour! A parent recently shared with me that he told his son he would get a new game for his Wii after the dental visit and it really worked. His son was also very proud of himself to have managed the experience.

Preparing the dentist:
I know that maybe as parents we shouldn’t have to do this, but many dentists do not know about the needs of children with learning difficulties and often you will need to tell them about your child before the visit. It is worth it, as most dentists really want to help as much as possible. It is also worth asking around if there is a dentist in your area that works with children with special needs/young children.

Appointment times:
Ask the receptionist/dental nurse for appointments first thing in the morning or straight after lunch to avoid having to wait for too long.

Build visits up slowly:
Use the first trip to just visit the dentist, then the next to sit in the waiting room and perhaps sit up in the chair. It took Stephen quite a number of visits to get to the point of being able to sit and open his mouth.

As with all the professionals you work with, building the relationship with your dentist takes some time. It is especially important for children with special needs to start this relationship as early as possible. In fact, I believe that dentists should be part of the multidisciplinary therapy team and not just something ‘on the side’.

I am delighted that my Going to the Dentist app is now featured on Dentistry.co.uk and Irish Dentist.ie

Rare Chromosomal Disorders, more common than you might think

avril@offwego.ie (Avril) — Mon, 01 Nov 2010 00:00:00 +0000

In my recent blog, I shared with you that after 12 years of questions about the cause of our son Stephen’s disability, we got some news from the genetic team at The National Genetics Centre in Dublin. They have found that Stephen is missing part of his 5th chromosome.

We are trying to get our heads around what this means and to prepare for our meeting with the doctors on November 16^th. You would think after 12 years of dealing with doctors, disability, therapists etc, I would be used to these kinds of meetings. Well I’m not, I wish we didn’t have to go. I am nervous and scared about what they are going to tell us. So to try and alleviate some of the worries on the practical side, (it is not as easy to fix the emotional side) I have been out hunting for some information and I would like to share some of it with you. I would be grateful if you could help raise awareness about rare chromosomal disorders. There are profound feelings of isolation when you have a child with a disability and it is hard to get information. I know from first hand experience that being ‘undiagnosed’ and ‘rare’, leads to even more isolation. There are thousands of children and adults in Ireland affected by this.

First some facts and figures: At least 1 in every 200 babies in the UK is born (it is probably around the same in Ireland) with a chromosome disorder. It can happen to anyone. Rare chromosome disorders occur because of extra, missing or rearranged chromosomal material. This means that the genes, the instructions that should make our bodies work and develop properly, don’t function correctly.

Unique are a wonderful group based in the UK. They supply information, support, link families, raise awareness about rare conditions amongst other things. It is run by a whole team of wonderful people, many of them parents of children with chromosomal disorders themselves. I am very grateful to Beverly Searle and Marion Mitchell who have given us specific help with questions to ask the doctors when we meet them later this month.

Here is a video made by Elizabeth McPherson and her husband that I found to be useful introduction to chromosome disorders, rather than having to read pages and pages.

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Here in Ireland there are some good links also to support groups of specific rare disorders. I'm sure there are many but here are 2 I'm aware of:

22q11 Ireland provide help and support for individuals and families affected by 22q11.2 deletion/DiGeorge Syndrome/V.C.F.S.

SOFT, the Support Organisation for Trisomy, in Ireland, is a voluntary group dedicated to providing support for families of children born with Patau’s Syndrome (Trisomy 13), Edwards’ Syndrome (Trisomy 18) and related chromosomal disorders. Both of these organizations do great work to support families and they also have good information on rare chromosomal disorders.

As Stephen’s Mum I know there is ‘no fix’ available for Stephen’s severe level of intellectual disability. But what I do know is one of the most vital things for me and our family is support from other families who are on the same journey. Apart from friendship, the other thing is that you learn far more from another parent about navigating the world of disability, than you do from any doctor or therapist. So in another way I am looking forward to meeting the doctors on Nov 16^th, as hopefully we might find there is another family in Ireland or outside of Ireland who have a child with the same condition as Stephen.

Best wishes as always,
Avril

Apps - mobile learning, communication, entertainment – where to start?

avril@offwego.ie (Avril) — Sun, 17 Oct 2010 13:39:58 +0000

Since my ‘Going on a Plane’ and ‘Going to the Dentist’ apps have gone up on the App Store on iTunes a few weeks ago, I have been really interested in finding out what apps are available for children, but particularly children with special needs. There is lots of stuff out there, but where do you start?

Well can I suggest, you take a look at www.momswithapps.com. Lorraine Akemann has set this website up. Lorraine is an inspiration, like every parent, she is concerned about how media is going to affect her children. She advises to set limits, stay informed of technology and get quality content. In other words, be careful what your kids are looking at on their various screens.

Her group www.momswithapps.com are a group of parent developers (150+ members from across the world), and because they are all parent developers, they have their ‘testers’ right with them! Therefore they are producing excellent quality content with the end goal being to create more interactivity (not less) with those around them.

I am particularly interested in the special needs section on the website. Please check out this video where Lorraine is interviewed by Craig Evans from Autism Hangout. This another great website. This video takes about 15 minutes, it is an excellent overview of apps and then goes through some examples of apps available to help children with all sorts of communication difficulties. Lorraine mentions the Grace App developed by Lisa Domican.

{qtube vid:=b79uFesxa9c w:=480 h:=385}

Another good place nearer to home here in Ireland is a great Facebook page called Team iPage. It is run by Jenefer Cullinan and its aim is to share information about good iPhone/iTouch apps for our children.

I am honoured that my Off We Go! apps are now listed on the Moms with Apps site and on Facebook’s Team iPage.

I would love to hear from you on what Apps you have found useful with your kids.

Best wishes as always,
Avril

Off We Go! Apps Now Available on iTunes App Store

avril@offwego.ie (Avril) — Wed, 08 Sep 2010 10:40:23 +0000

I am very excited to let you know that Off We Go! Going on a Plane and Going to the Dentist books are now available as iPhone and iPad Applications (Apps) in English and Spanish. So now if you are going on a plane or visiting the dentist, you can use your iPhone or iPad to help prepare your child and make the experience easier for everyone!

The Off We Go hardcopy series of books are a very successful visual step by step guide to everyday experiences, particularly for children with special needs. Sometimes you might not have the hardcopy to hand so by having them as Apps, they are not only practical, but also they have some great new features such narration (you can even record your own narration) and colour in the pictures yourself. Any word you touch will ‘jump up’ and be spelt out to you, a fun way to learn spellings!

From what we have seen with our own son Stephen who has special needs, the iPhone and iPad touch screen technology is going to revolutionise how children with disabilities can access all sorts of stuff, from games to learning and entertainment. Up to now a lot of the assistive technology (technology used by individuals with disabilities in order to perform functions that might otherwise be difficult or impossible) is so expensive that it makes it difficult to buy/justify. Stephen loves the Apps on my iPhone, in fact it can be a bit of a challenge to explain that it is my iPhone, not his! Given his reaction we know what he wants for Christmas! He is particularly enjoying the Going on a Plane iPhone App, repeating the word ‘Legoland’ as this was the last time he was on a plane and he would like to go again!

I worked with Kiwa Media to produce my Apps. They specialise in making iPhone and iPad book apps. They are based in New Zealand and have lots of other interesting book Apps available.

The iPad apps have some really cool features! Some of the screens are animated e.g. in the Going on a Plane App, the user can touch the screen and see the bags moving at check in. The best feature is hearing the sounds. We know from working with Stephen, it really helps if you can give him an idea of the sounds he is going to hear. (Keep in mind that kids with sensory issues like Stephen are likely to hear things 4 times louder than we do, so can you imagine how extra scary it is to go to the dentist?) So for example on the iPad Going to the Dentist App, you can hear the sounds of the drill and suction and help your child to know that despite the scary noises, it is going to be ok. The sounds and animation features will be available on the iPhone Apps in a few months time.

Please check out these new Apps, I would be delighted if you would leave a review!

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Below are links to each of the apps on the iTunes App Store or you can access all 4 of them here :

Off We Go! Going on a Plane iPad App

Off We Go! Going to the Dentist iPad App

Off We Go! Going on a Plane iPhone App

Off We Go! Going to the Dentist iPhone App

Best wishes as always,
Avril

Importance of Including Disabled Characters in Books to Change Attitudes

avril@offwego.ie (Avril) — Tue, 07 Sep 2010 11:55:27 +0000

In my blog back in April I said I would tell you more about Booktrust. It is an independent national charity based in the UK, which encourages people of all ages and cultures to discover and enjoy reading. See www.booktrust.org.uk. I am particularly interested in the work they are doing to support publishers to include characters with disabilities in the books we read. We need to see more people with disabilities in all media including books, magazines, TV, ads etc. to really move forward and change attitudes.

At the ‘Equal Measures’ event at the London Book Fair earlier this year, Viv Bird Booktrust’s CEO highlighted the social value for all children to see positive images of disability in books and the importance of celebrating difference. Although many educational books include some characters with disability, this is not the case for most ‘mainstream’ childrens’ books.

Alex Strick from Booktrust and Julia Donaldson (author of The Gruffalo and dozens of other books) said it is not necessary to make ‘special books’, just adapt what we have and to include characters with disabilities in a natural way. In fact Julia commented that it is better still if we can tell a funny story and raise awareness that way!

The event was hosted by the wonderful Kelly Knox, winner of BBC’s Britain’s Missing Top Model. She was born without a left forearm, but her family friends always ensured she has felt no different from anyone else. She went on to say how she felt children’s books have the power to get across the same messages as she was exposed to growing up – in other words to help ‘normalise’ disability.
For more information see Alex Stick’s piece on the event.

Booktrust have a great resource on their website called Bookmark which offers information, book reviews and advice on all aspects of children’s books and disability issues.

It also includes a section on guidelines for Including Positive Images in Books: Ideas for Writers, Illustrators and Publishers authors and illustrators

When I work with the illustrator of my Off We Go series of books David Ryley, we include characters from different backgrounds and some that have disabilities to reflect the world we live in today. But I still have work to do in this area, since I see now that I have used the stereotypical example of the old fashioned wheelchair in my books.

I enthusiastically support organisations like Booktrust in the work they are doing to ensure that the books we read fully reflect the diverse society in which we live.

Please help spread the word about the importance of visually including people with disabilities in all media.

Best wishes as always,
Avril

Undiagnosed for 12 Years - now Array Tests Give us a Clue

avril@offwego.ie (Avril) — Sat, 21 Aug 2010 12:56:02 +0000

After 12 years of questions about our son Stephen, we have just got news that through high resolution chromosone array analysis, they have found part of his 5th chromosome is damaged. This is huge news for us, as up to now the doctors could find nothing to explain Stephen’s condition. As we can imagine, we are full of questions – what does this mean for Stephen, how did it happen, could it happen again?... we are now waiting for a meeting with the consultant.

Science is moving on in a massive way in the area of genetics and diagnosis. Up to now the doctors could only really test for known conditions or give a diagnosis based on symptoms. But that has now changed; with this new array testing, they can now look in a very detailed way into the DNA to find any abnormalities and have a better chance at finding out what is wrong. As explained in this leaflet ‘previous test results were like an old-fashioned map of the world which showed just a wide overview (country level) and that doing an array is more like using Google earth which allows us to zoom in much more closely, even down to street level, to give a closer and clearer idea of which genes, if any, are missing or duplicated.’

If you have no diagnosis or know someone, please let them know about this new array testing.

Science is progressing, but it is just the beginning. There is so much we don’t know. As the Dad in this blog points out:
‘There are many things about our son that we will never began to understand and comprehend. What makes this ever more complex is the fact that the experts, clinicians and thought leaders aren’t that much further ahead of us. Sure, there are great leaps and bounds with technology and therapy, but the fact remains that we have a very long way to go.’

Awareness is key. For anyone with no diagnosis, check out www.undiagnosed-usa.org, a great website by Amy Clugston who advocates for awareness and change for families with children who have no diagnosis. For anyone in Ireland see www.grdo.ie. As I said earlier, please spread the word about these new array tests. I’ll let you know how our meeting goes with the consultant.

With thanks and best wishes as always,
Avril

Off We Go! and ITV’s Signed Stories

avril@offwego.ie (Avril) — Sun, 04 Jul 2010 14:11:02 +0000

I am very proud and delighted to let you know that my Off We Go ‘Going to Buy Clothes’ and ‘Going to the Doctor’ books are now up on ITV’s Signed Stories. Take a look and let me know what you think!

Signed Stories is a wonderful resource that presents stories in and a fun and active way, while also signing at the same time. Signed Stories has a very simple goal – to help improve the literacy of deaf children nationwide by allowing them to share in the joy of storytelling. It’s also designed to provide useful advice and guidance for the parents, carers and teachers of deaf children; and for the deaf parents of hearing children. Now Signed Stories are expanding to help children with learning/intellectual disabilities like autism. Using sign language with children with a language delay is proven to help with speech development.

See below some tips from the Signed Stories Special Education Needs section :

Autism and sign language

Children with autism might need more help to develop their language and learning skills – and sign language can really help kick-start the learning process.

Sign language is visually engaging – many signs such as “drink” etc are visually associated with the object or word they relate to and this acts as a bridge to speech and language development.
Children with autism may display negative social behaviours, like tantrums and aggression which are intensified when they cannot communicate their basic needs and wants – sign language offers them another way to relieve this frustration.
Giving children an additional means to communicate boosts their confidence and self-esteem.
Children who can express themselves are more likely to seek out social interactions and enjoy the company of others – and learn how to behave and communicate with others.

We use a mixture of communication with our son Stephen, including sign language. Signing is an important tool to help communication and head off frustration. We need to raise awareness with society that sign language is like any other language and encourage everyone to learn some signs. It brings such joy to a child or adult who uses sign language to be acknowledged and responded to by a new/unfamiliar person!

Best wishes as always,
Avril

Education for Children With Complex Learning Needs and Neuroscience

avril@offwego.ie (Avril) — Sun, 04 Jul 2010 13:05:54 +0000

How's that for a mouthful of a title, hope it didn't put you off reading.

I was at a super lecture last week given by Professor Barry Carpenter on ‘Children with complex learning difficulties – the challenge to 21st century special education’. Professor Carpenter explained that our education system does not have the tools and strategies for many of our students with complex learning difficulties and disabilities. We need to not just ‘differentiate’ but ‘personalise’ education and learning programmes to engage all students. It cannot be a ‘one size fits all’ approach.

He is leading the ‘Complex Learning Difficulties and Disabilities Research Project’ and my son Stephen’s school, St Vincents Special School will be part of the research.

The lecture was fascinating and covered many aspects; one particular thing that interested me is what we can learn from neuroscience. Professor Carpenter explained that now with MRI scanning, we can see how the brain is working and if there are parts that do not work or are not there (this is the case for many children with complex learning needs). We can use this information to better tailor learning methods for our children. He gave the example of how we now know from brain scans, there are certain syndromes where the child is actually missing the part of the brain that deals with numeracy. So how can you expect that child to learn maths with traditional teaching methods?

Coincidentally I received this link when I got home from the lecture and it again talks about what we can learn from neuroscience. Aditi Shankardass explains how a remarkable EEG device has revealed mistaken diagnoses and transformed children's lives. This is really interesting. It takes about 8 minutes but is worth the time.

I also have to mention Foetal Alcohol Spectrum Disorder. I was astonished to hear it has the same prevalence level as Autism Spectrum Disorder, at 1 in every 100 children. We hear plenty about Autism and ASD and very little about Foetal Alcohol Spectrum Disorder. See http://www.nofas-uk.org/ for more information.

With best wishes as always,
Avril

What are the right words to use when people are different?

avril@offwego.ie (Avril) — Sun, 20 Jun 2010 20:47:21 +0000

I had an exhausting and exhilarating time last week as a volunteer at the All Ireland Special Olympics Games! I was working in Special Olympics Town where the athletes came in between races for some fun and recreation. We were in 2 marquees and we had all sorts of activities including art, music, drama etc. One of the things it made me think about was the language we use when talking about people who are different and need extra help. We have the words ‘disability’, ‘special needs’ and sometimes we still hear ‘handicapped’. It is hard to get the balance right; we need words to describe when some one is different because we cannot pretend that they don’t have extra needs. However by using the word ‘disability’, it immediately focuses on the individuals’ needs, as opposed to their gifts.

I am a Mum to Stephen (age 12) who has an intellectual disability and I struggle with this all the time. Sometimes I say to a person who does not know Stephen and who is about to meet him, that he is like a 3 year old. I have been criticised for doing this as I am being unfair to Stephen. This is true in a way, because in some areas he is further on than a 3 year old (you should see Stephen playing the drums!), but in cognitive terms that is where he is at. I am trying to give this person who has just met Stephen some ‘framework’ or ‘starting point’ on how to connect with him. Many people are fearful about approaching and getting to know someone with an intellectual disability and for me the most important thing is to break down the barriers and try and reduce that fear. We have to call a ‘spade a spade’, sometimes political correctness goes a bit mad and we lose what we are trying to say.

Even though our language forces us to think about limits and needs, we need to realise the contribution of people with disabilities (sorry I don’t have a better word). My father-in-law shared his awe and admiration of a golfer competing in the Special Olympics Games last week. This golfer is blind and in wheelchair and on the first tee, a par four, he drove the ball on the green, a shot of about 350 yards. This man is an incredible athlete by any standards.

For me what was inspirational last week was the sense of enjoying the moment, of living in the present. I find this hard to do - that idea of ‘just being’ and not thinking about tonight’s dinner and what is on tomorrow! One of things I love about the Special Olympics athletes and about my own Stephen is spontaneity. If Stephen wants to give me a hug, well he just gives me a hug; he doesn’t worry about the social rules about when and where. And he is right because hugs are important anytime! I enjoyed seeing the athletes’ enthusiasm for dancing and music and giving it their all.

Coming back to my language issue, what are the words we should use? I don’t know. I think it is important that that we try to say an ‘individual with special needs/disability’ rather than a ‘disabled/special needs person’ to show that the individual is a person first and secondly they have a disability.

For practical reasons, we have to say when someone has a disability because by far, the most important thing is to help communication and to make sure everyone is included in all aspects of society/community. And people with disabilities need extra help and support. However, we need to also remind ourselves that this group who we label ‘disabled’ is also the group that show us inspiration, gifts/skills/talents, compassion, enthusiasm, love, all the things that make us human and who we are.

With best wishes as always,
Avril

Transitioning - sleep, glorious sleep!

avril@offwego.ie (Avril) — Wed, 02 Jun 2010 11:16:36 +0000

Our son Stephen who has special needs (classified at the severe end of intellectual disability and ASD), finds it hard to go to new places and try new things. I learnt from various therapists and teachers that the technical word for this is ‘transitioning’. Like us all, Stephen likes to know what is happening. When he understands he is doing something different, he manages better. We find that the key to helping him cope with this is to prepare and communicate and him. As Stephen has limited language, we use pictures and signs to help communication. This was the reason I created the Off We Go series of books. We now have a new ‘transitioning’ challenge, in the area of sleep and I can’t use pictures to fix it!

Stephen is now age 12 and has never been a good sleeper, but recently his sleep pattern has got worse. Firstly, he has trouble in that transition time from lying in bed awake to going asleep. We have got used to this over the years, and we would be thankful when he finally settled at perhaps 10:30/11pm, that at least he was asleep and would normally not wake until 6:30am.

Our new problem is that he is waking up lots during the night. So we kept a diary and can see the pattern. It seems he is waking at the transition points of different sleep – in other words, we all go through different levels of sleep during the night and mostly move through them without waking up. Stephen is waking, getting up, walking around and is finding hard to settle back.

And of course this lack of sleep affects all areas of his life, and ours too!

I subscribe to Exceptional Parent magazine and came across an interesting article on the subject of sleep by Caroline Eggerding, MD.

If you haven’t come across this publication before, check it out. Although I live in Ireland and Exceptional Parent is focussed on the US, I always find it has great information and interesting articles. See http://www.eparent.com/

In her article the author reports that, guess what, 40-80% of children on the autistic spectrum have significant sleep problems, so we are not alone! She goes on to say:

‘For children with autism, there appear to be more challenges. There are studies that suggest children with ASD are more likely to have circadian rhythm (natural wake/sleep cycles) disturbances and may have abnormal melatonin regulation…In addition children with autism may be more anxious about bedtime routine…They are also more sensitive to sensory experiences such as light, touch and sound.’

Things have improved for us in the last few weeks, so for anyone out there with the same issue, this is what I have learned so far.

Routine - bedtime routine is really important. So we keep strictly to the schedule of shower/bath, followed by some TV time and his evening snack.

Relax time - We have increased the time we spend with him at actual bedtime trying to encourage ‘slowdown’ time. He likes big ‘compression’ bear hugs and doing prayer time. He will repeat the prayers in his own way incessantly, so instead of just doing it once we let him do it 3 times. It seems to soothe him in some way.

Exercise – we found that if Stephen was swimming or had been out for a walk, it helps him to sleep. So no matter what, we have to make sure there is some exercise everyday!

Food – Stephen is not a great eater even at the best of times and is super sensitive to certain tastes and textures. He has got quite tall recently and I was talking to some Mums of (‘normal’) pre-teenagers, who mentioned the increase in their children’s appetite. It got me thinking that maybe Stephen needs more food. So I have increased his snacks and that seems to have helped too.

If anyone has any experience or advice in this area of sleep, I would love to hear from you!

With best wishes as always,
Avril

Off We Go Interactive

avril@offwego.ie (Avril) — Tue, 18 May 2010 19:19:59 +0000

Watch this space!

I just want to let you know we are busy working on an interactive version of Off We Go! which will be ready in a few weeks. I want to be able to prepare Stephen (who has special needs) and other kids for the sounds and ‘feel’ of a particular environment. My aim is to try and ‘bring to life’ some aspects of my Going to the Hairdresser book.

As well as being able to see the sequence of what happens, I am keen that Stephen will be able to ‘investigate’ what happens in advance e.g. open a door, turn on a shower. The whole idea here being that the more he is familiar with an environment, the easier it will be for him to manage and even enjoy the experience!

We know from using the books that preparing him using a visual schedule in the form of a book really helps and now I want to take it to the next level for him.

I will be looking for everyones feedback on this first interactive version of my books and I will then use this feedback when we create the interactive version for all the other books.

Also I am inspired by Lisa Domican and her Grace application. This is a Picture Exchange App for iPhone. See below for more details.

We are researching how we can make the books available as iPhone and iPad applications. Sometimes you might not have a book with you, but you will nearly always have your phone. As Lisa mentions in her application, it’s all about portability and being able to support your child wherever you are.

It all links to my overall goal of helping children access a particular place or environment that might be difficult for them. It’s about using content and technology as tools to make life easier and help include everyone in day to day activities.

Best wishes as always,
Avril

Special Olympics – positivity, generosity, community working together

avril@offwego.ie (Avril) — Wed, 12 May 2010 08:18:54 +0000

The Special Olympics All Ireland Games are being held in Limerick 9th -13th June 2010. I am a volunteer and I’m helping out with the Special Olympics Town. Despite all the economic doom and gloom every where you turn in Ireland at the moment, I have had the pleasure of meeting new people and experiencing people’s kindness, generosity and willingness to work together to put on a wonderful event in June! This is the kind of community partnership and participation we need to give us confidence and inspiration.

Over 2,500 volunteers have been recruited to run the Games and hundreds more are giving their time and skills to contribute to the event. The Special Olympics Town is an area of recreation, information and entertainment particularly aimed at athletes and their families. It will be held in a marquee area on the campus of the University of Limerick. There will also be a public area so we are looking forward to meeting lots of you there! The Opening Ceremony is on Wednesday evening 9th June 2010 in Thomond Park. It will be a celebration of ability, success and achievement, full of pageantry and colour. According to local media, The Cranberries will be topping the bill.

As well as me benefitting from being a volunteer, our family benefits hugely form Special Olympics. I am very proud to say our son Stephen won 2 medals in Cork last Saturday! He enjoyed the experience of going off on the bus, despite his fussing mother! Stephen shared his delight with winning his 2 medals with his brother Michael and sister Rachel. They in turn spread the news to all our neighbours and friends!

Check out further info at www.specialolympics.ie and in the words of the athlete oath:

"Let me win but if i cannot win let me be brave in the attempt"

Best wishes as always,

Avril

My thoughts on Inclusion Ireland AGM : Challenging times ahead, but we can all make difference

avril@offwego.ie (Avril) — Fri, 30 Apr 2010 08:25:51 +0000

I was at the Inclusion Ireland (Ireland’s largest organisation supporting people with intellectual disabilities) conference in Killarney last weekend. http://www.inclusionireland.ie/AGM2010.asp

It was well organised, informative and a great opportunity to meet other families and organisations working in the disability sectors. It was my honour to be asked to speak at the conference and also to be elected as a member of their board of management. I am very much looking forward to working with the new chairperson, Frieda Finlay and her team.

Key points I took away from the conference:

We are going to see significant cuts across all areas of disability services. It was discussed at the conference that these cuts could see disability services in Ireland back to levels of 20 years ago. Whether we like it or not, we as parents are going to have to find the energy to fight and try and stop this.
Parents need training and information. We need to take the opportunity to reform how money is spent in the disability sector. At the moment family members or individuals with disabilities have no say over where funds are used. Seamus Greene is leading the way in helping to make families aware of how they do things differently in other countries. I attended a very interesting workshop on Wills/Tax which really showed me that when you have a child with special needs, you need to get expert help to plan for the future including the set up discretionary trusts.
Despite all the doom and gloom, there are wonderful pieces of work being done by inspirational people across Ireland. One of these is Margaret Trundle, who has been running a summer camp for children with special needs in East Cork for the last 20 years with no state funding or help. A real example of people working together, goodwill and community connection – thanks Margaret.

I am interested to hear what you issues you think Inclusion Ireland should be focussing on.

Best wishes as always,
Avril

Taking on the Volcano to see the Gruffalo

avril@offwego.ie (Avril) — Thu, 22 Apr 2010 16:40:23 +0000

What a week it has been!

This time last week I was finalising my plans for my first visit to the London Book Fair. I had the meetings arranged, the bags packed, the sterling got ,and had studied Google Maps from the tube station to my hotel, to the Earls Court Exhibition centre (where the fair was on), and the shops (ssshh don't tell my hubby). All that was left was to get to the airport on time on Sunday morning and enjoy the trip, but then the volcano struck, covering Europe in a cloud of ash and all the best laid plans were thrown into chaos. At first it looked like it might blow over pretty quickly but soon I realised the chances of my flight going on Sunday were very slim.

You see I wasn't just due to attend the fair, I was there as a guest of Booktrust UK for their Equal Measures event, which was to explore the need for books to reflect positive images of disability. This fantastic event had several high profile guests including bestselling author Julia Donaldson (author of The Gruffalo) and I had the incredible honour of being invited with them, so it was not to be missed. So I managed to book one of the last remaining spots on the bus from Dublin to London and on Sunday morning I started off on my 17 hour trek from Limerick via train, luas, bus, ferry, foot and tube to get to the fair.

I have to say the journey was actually quite an adventure, Busaras in Dublin was chaotic with 12 buses going to London, instead of the usual 1, but once I sorted out which bus I was on I really enjoyed the rest of the trip. The ferry was a very nice and comfortable way to travel (much nicer than how I remembered my first trip to London on Slattery's bus all those years ago) and I have to say I think the whole family especially Stephen would enjoy it, so I think we will be taking a family holiday with the car over to the UK very soon. Everyone was in good spirits and I met a really nice lady who I had a great chat with all the way to London, who is now a friend for life.

When I finally got to London early on Monday morning, I grabbed a few hours sleep at my hotel before meeting up with the Illustrator for the Off We Go Series, David Ryley (who has now decided to become a full time illustrator and is living in London) and together we headed in to see what the London Book Fair is all about.

Despite the fact that a number of exhibitors and visitors hadn't made it due to the volcanic ash, it was still quite overwhelming the size of the fair but also extremely well organised. The Booktrust event wasn't until Wednesday so over Monday and Tuesday I had a number of meetings and got some great contacts and ideas on where to go next with my books (watch out for news on this soon).

The event itself was a wonderful success; the room was full and all the speakers were inspirational. I have to thank Alex Strick of Booktrust for the very kind words she said about me. I had to pinch myself that only a couple of years after creating books for Stephen at the kitchen table; here I was sharing a stage at the London Book Fair with such distinguished guests.

There is so much more I could write about the fair, the event and all the wonderful people I met but I'll keep some of these for another day.

Although the flights had started to go again on Wednesday evening, I decided not to chance it and went back on the bus again, arriving home exhausted on Thursday morning. Having got a good rest yesterday and overnight, I am rejuvenated and back on the road again today, down to speak at the Inclusion Ireland conference in Killarney.

Best wishes as always,
Avril

Importance of Having Close Communication Between School and Home

avril@offwego.ie (Avril) — Thu, 15 Apr 2010 15:32:53 +0000

I was doing a guest lecture in Mary I UL yesterday for teachers doing their extra qualification in Special Needs Education. While I was preparing it got me thinking about the influence our teachers have on our children and our family. As parents of children with special needs, we come with ‘baggage’! The teacher has not only to get to know your child but also take in all the input from the various therapists and psychologists.

The main message I wanted to leave with the students is the importance of working together and having close communication between school and home.

Over the years I have had the privilege of working with some wonderful teachers and assistants in Stephen’s school. He attends our local special school at St Vincents, Lisnagry. We work closely together to support Stephen.

A practical example of home and school working together:
‘Newsbooks’- there is a great system in Stephen’s school of newsbooks. We have two, one is Stephen’s newsbook and the other is a notebook his teacher and I use to tell each other news. Let me tell you first about Stephen’s newsbook. Each day when Stephen comes home from school he shows me his ‘news’ – his teacher will have put a drawing of something significant that happened in school along with a few words. It might be that Stephen had music that day, there might be a picture of drums. Stephen will point and in his way tell me his news.

This newsbook is also a great opportunity for speech and language development, in a very ‘natural’ ‘normal’ way (not a formal programme). Stephen and I are both motivated to find out the news!

Then later that day, it’s our turn to put something in Stephen’s newsbook to tell his teacher and classmates the following day at circle time. We may have been for a walk or gone swimming. And it’s our job to draw a picture and put some words in his book. Now my art skills are not good so I make good use of the digital camera and use photos! Stephen’s sister and brother also love getting involved in what we will put in the newsbook and often they draw pictures for me.

The second newsbook is the notebook I use to tell Stephen’s teacher any home news that will affect his day at school, e.g. if Stephen has not slept well or is a bit off form. Or it may be that we are trying to organise a meeting together with a particular therapist to get input for Stephen’s Individual Education Plan.

I have found this system of communication to be effective and good fun! Actually Stephen loves looking back over old newsbooks as they are like picture diaries of things his has done.

It is not only very beneficial, it is essential to have a close working relationship between home and school.

Best wishes as always,
Avril

Trip to Legoland

avril@offwego.ie (Avril) — Thu, 01 Apr 2010 14:52:18 +0000

We took the kids to Legoland outside London last week and we had a great time. We have been 3 times before so we went with high expectations and they were met and exceeded! Legoland go out of their way to welcome children with special needs, which makes such a difference (check details on their website here, make sure you bring the required documentation, i.e. a GP's letter).

Travelling through airports can be hard on everyone. My ‘Going on a Plane’ book from the Off We Go Series was well used and effective for helping us all get through security and the various queues. Full marks to Ryanair ground staff, who could see Stephen was finding it difficult to wait and invited us to the priority boarding queue free of charge.

The week before we went, my 9 year old son Michael helped make a book for Stephen. We used pictures from the internet of our hotel, car hire etc. as well as photos from our last trip to Legoland. Stephen loved reading it with us and at school and it meant he could share in the excitement of the trip.

Legoland provide a picture map of where the rides are so all the kids can point and follow to where they want to go. As long as we kept reassuring him on what was coming next, Stephen coped well. In fact, he coped so well, he did not want to come home!

There were lots of highlights of our trip – most of all we had lots of laughs. The kids enjoyed getting me up on some of the scary rollercoasters. Stephen enjoyed the driving school where he managed independently despite his fussing mother and achieved his Legoland’s driver's licence!

Travel tips:

Make a homemade book/set of pictures – this really helped to prepare Stephen so he knew what to expect and also to share in the excitement of our trip away.
Ask for help – I am not good at this, but I am learning that when you ask most people are more than willing to give you that extra bit of help.
Plan and praise – plan as best you can and use pictures to help communication.
Praise as you go along and use rewards and most of all, quit while you are ahead!

Wishing you all a very Happy Easter!
Avril

New Website Live

avril@offwego.ie (Avril) — Sat, 27 Mar 2010 15:56:56 +0000

I am delighted and very proud to let you know that my newly designed website went live last Thursday night.

Please check out www.offwego.ie and let me know what you think! There are lots of new features including easier navigation, free downloads and tips on using the Off We Go! series.

I will be adding to the information provided in the Resources section and I hope my visitors will find it interesting and useful.

Best wishes as always,
Avril

New Off We Go Website Launch May Affect Followers of this Blog

avril@offwego.ie (Avril) — Mon, 22 Mar 2010 00:00:00 +0000

I will be launching the new Off We Go website later this week.

As part of this launch I will be moving my blog, and as a result some of you who are subscribed may see some strange behaviour! Your subscription should update automatically to the new blog but you may see duplicates of some of my old posts re-appearing again.

This will also affect those of you following us on Facebook.

I apologise for any inconvenience, but this should just be a one off when the new website is launched, after which everything should return to normal.

If anyone does experience any problems please do not hesitate to contact me.

Best wishes as always,
Avril

Infuriation & Inspiration due to Cuts in Education for Children with Special Needs

avril@offwego.ie (Avril) — Tue, 09 Mar 2010 00:00:00 +0000

As many of you have seen in the media, the Department of Education has asked the National Council for Special Education to carry out a review of Special Needs Assistants (SNA) in our schools. The result is that many SNAs have lost their jobs and many children with special needs are being denied the help that they need.

We are going backwards instead of forwards on giving children with special needs meaningful, inclusive education and choice. It seems our government want to push away parents, while in the UK things are going the other direction.

The special school our son Stephen attends had its Value for Money Review last week. Given the cuts that have been made already in other schools, in both special and mainstream schools, we are concerned and anxious about what may happen in our school.

It is infuriating that our politicians think we have no voice and as we are a vulnerable group, we are an easy target for cutbacks. The attitude of the Dept of Education and Science is also infuriating. The ‘spirit’ of the role of an SNA has been lost. Their role is assessed only on the care needs of the child and not on helping the child to keep on task and learn. Despite the fact that the ‘reviewers’ that are recommending these cuts are called Special Education Needs Organisers (SENOs), it seems they are not interested in education and how our children learn. It seems the Department's focus is purely to provide special needs children with a place in a school, but whether they actually learn anything meaningful while they are there is not important.

What is inspirational is the reaction from parents and families across the country to fighting these cutbacks. Families of children with special needs that are already stretched to the limits are e-mailing their TDs (check out Am I not worth Educating for details on how to and this, including a draft e-mail you can send) doing interviews on TV, radio and newspapers. This is not something new for them; because if you have a child with special needs it is a fight all the way to get services and support.

Check out the facebook group Join if you're Against Special Needs Assistants losing their Jobs that has over 21,600 members and is growing daily.

From this crisis situation, a new group The Special Needs Parents Association of Ireland, has been formed. Any person who would like to join please email : specialneedsparents@gmail.com. Representatives of this new group will be attending the Joint Oireachtas Committee meeting on Special Education this Thursday 11th March.

Another inspiration is to keep an eye on what is happening in the UK. The Lamb Inquiry issued its final report in December and concludes that parents need a stronger voice in the education of children with SEN, and the school system should be more focused on outcomes. Check out this summary from SEN magazine.

I would urge everyone to keep the pressure on; together we will be a strong voice that our government will not be able to ignore.

Best wishes as always,
from an infuriated yet inspired Avril

Upcoming Conferences

avril@offwego.ie (Avril) — Mon, 01 Mar 2010 00:00:00 +0000

I would like to let you know about three conferences that are coming up in the next few months. I plan to be at these and I’ll report back what I find interesting.

Inclusion Ireland is a national voluntary organisation working to promote the rights of people with an intellectual disability in Ireland to ensure their full and equal participation in society. Their AGM & Annual Conference will be held in Killarney, Co. Kerry on Friday and Saturday 23rd and 24th of April 2010. The theme is "Different Times, Different Thinking - addressing the challenges of an economic downturn for people with an intellectual disability and their families" See http://www.inclusionireland.ie/ for more information.

‘When Children Learn Differently’ is a 2 day conference for educators, policy makers and parents on the 1st and 2nd of May 2010 in "Glor", Ennis, Co. Clare. The conference offers participants a host of lectures and workshops dealing with emotional education, neurological development, behaviour as a communication, sensory processing disorder, self-harm and suicide. There are many interesting speakers including Deborah Plummer and Jane Serrurier will host a workshop on "Impact on Learning: Supporting Children's Needs Through Imagery, Multi-Sensory Play, and Creative Thinking" and Prof. Paul Cooper PhD will deliver the keynote lecture "Understanding and Promoting Emotional Education". See http://www.irishconferences.com/ for more information.

‘Designing Sustainable Support for Individuals-Taking a Lead from People with Disabilities and Families’ National Conference is on 13th and 14th May 2010 in Portlaoise Heritage Hotel, Co. Laois, hosted by New Options Alliance. This conference will look at innovative, person centered, service arrangements in Ireland. This conference is for people with disabilities, their families, service providers and policy makers. For further information please contact Genevieve McNally in Cheshire Ireland 01-2974100 or e-mail genevieve.mcnally@cheshire.ie or see info on fedvol.ie where you can also access the brochure and registration form.

Right to Education and Lifelong Learning for All

avril@offwego.ie (Avril) — Tue, 16 Feb 2010 18:15:00 +0000

I have had a very mixed few days on the subject of education. I was at a wonderful Open Day at Mary I/University of Limerick last Friday -we are following in the footsteps of Trinity College Dublin, NUIG, UCC and the Dundalk Institute of Technology to make third level education available to individuals with an intellectual disability. See http://www.tcd.ie/niid/

However, I was also at a crisis meeting of parents trying to fight the cutbacks in level of staff at our special school St Vincents Lisnagry Limerick. Some special schools have lost more than half their staff. St Joseph’s Special School, take a look at this clip from Ireland AM.

In this analysis, the estimate these cutbacks will set the education of children with special needs back by 20 years. I know for sure, that the proposed cutbacks will have a huge impact in reducing our son Stephen’s opportunity to learn and access education.

At our Open Day, Miriam Twomey, the co-ordinator of the new course at Mary I/University of Limerick for adults with intellectual disabilities gave an excellent presentation. On her concluding slide she quoted Te Whariki ‘It takes a village to raise a child. We are all children of the community and we should empower each individual to play, work, learn and grow together’.

We need ‘our village’, ‘our community’ to all come together to stop these educational cutbacks and advocate the rights of our children with special needs to learn and have the same opportunities to go to college/university as our able-bodied children have.

Best wishes as always,
Avril

How do you create friendships for pre-teens with complex needs and limited language?

avril@offwego.ie (Avril) — Thu, 04 Feb 2010 10:16:00 +0000

We all need friends, we all need to feel like we belong. We organise playdates and social activities for our ‘able bodied’ kids. But how do you create/facilitate friendships for children with intellectual disabilities and autism who have limited language skills?

Well that’s one of our many challenges! Enable Ireland are helping us here in Limerick to set up an after school club for a group of pre-teen boys, using an art therapist to facilitate the group. This project is also an example of different agencies(Enable Ireland/Daughters of Charity/HSE) working together. We are calling the group ‘The Funclub’, here is the logo from our newly printed t-shirts and we are starting this Thursday.

My friend Maria, is Mum to Stephen’s friend Darragh who has down syndrome. She and I approached Evelyn O’Brien from Enable Ireland and explained that we want to help build friendships for our boys and set up an afterschool club. Despite the fact that there is reduced funding available at the moment, Evelyn listened and said she could see how our Funclub idea could help a number of pre-teen boys with intellectual disabilities. She came back to us with funding for a 10 week pilot project.

I have to pay tribute to Evelyn for her openness and genuine commitment to providing a quality service to meet our needs. I have found Enable Ireland a great organisation to work with. They are willing to ‘work outside the box’ and set up innovative projects. We needed a venue - Brian and Breda at our East Limerick Children’s Service were very helpful and said we could use their building.

So to start with, our Funclub is a boys only club (five boys), we have two male family support workers and a male art therapist. The ‘boys only’ aspect is an added advantage, as our boys are surrounded by women in the disability/education sector and I think it will be great for them to have some male influence. The emphasis is for our boys to have fun and we’ll see what happens with the art. The art aspect is to find a creative fun way for the boys to connect together.

Anyway I’ll keep you posted on how we get on. My message here is that with persistence and ‘open’ service providers/agencies, you can get innovative quality services for our kids, despite all the cutbacks.

Best wishes as always,
Avril

More on Using Pictures to Communicate

avril@offwego.ie (Avril) — Tue, 26 Jan 2010 15:17:00 +0000

Although our son Stephen doesn’t have a formal diagnosis for any specific disability, we know he has lots in common with the kids on the autistic spectrum and kids with down syndrome. He has a significant language delay and understands more than he can say. Despite having difficulty with words and language, I have to add he has good communication skills and works hard to get his message across! He can also read body language very well. We use pictures and Lámh signs to help our communication.

One thing we know works well for Stephen is his schedule board, where everyday we put up what’s happening. He is calmer and happier when he understands what is going on. I wrote about it in this blog - Using Pictures to Communicate.

I use a mixture of photos, pictures and symbols with Stephen. I am constantly on the watch out for pictures. He likes the pictures from my Off We Go! books and I use the pictures from these for going places like the cinema and going to buy shoes. Perhaps they may be useful for some of you, so here is a link to a free download of some of the pages from my new series of books (the original blog linked above has a free download of pictures from the first series).

This blog contains sources that I have found useful for pictures.

Although I mostly use the pictures to show Stephen what is/will be happening, he uses them as well. During our ‘winter wonderland’ in December and early January, Stephen like us all was suffering from cabin fever and was determined to get out of the house irrespective of snow and ice. He found the extended school holidays hard and wanted to get back to routine. One morning he came down to breakfast and emptied our box of pictures to find our ‘going in the car’ picture and persistently signed for drive in the car. Once we got him in the car, he very clearly had the words ‘shop’ and ‘dvd’! It was great to see him initiating and his motivation to get those words understood!

Best wishes as always,
Avril

Exciting things happening in disability services in Co. Clare

avril@offwego.ie (Avril) — Sun, 17 Jan 2010 15:00:00 +0000

I was at a presentation by Martina Rynne, Brothers of Charity Services Clare on Family Leadership last Wednesday. She has just returned from Australia where she was on a work placement with the Mamre Association in Brisbane where she was learning about the role of families in ensuring that their relative with a disability has a meaningful and inclusive life. Brothers of Charity in Clare are leading the way in Ireland on looking at changing the approach to delivery of services in the disability sector.

Martina’s presentation was excellent and really got me thinking. I have been focussed on what therapy Stephen needs ‘to fix him’ instead of looking at what kind of things we can put in place for him to have a really good life, that it’s not just about school and therapy.

Martina explained about the ‘natural authority’ of families. In other words, families need to have a say in what services work best for their loved one. She was able to show that in Australia when this system is in place, there is openness and transparency and less waste of time and money.

We also learnt about planning for when parents are not around, an acute worry that all of us share. We all know the importance of making a will for our families. It is more complex when there is a child/adult with special needs is involved. Martina shared with us how families are supported in Queensland Australia to plan from when the child is very young.

I know the funding and laws are different in Australia than here in Ireland. But putting those to one side, what I came away with was the idea of looking at Stephen and his life from a different perspective. We are planning a follow up meeting so I’ll be talking/writing more about this in the coming months.

Best wishes as always,
Avril

Volunteers Needed For 2010 Special Olympics Ireland Games!

avril@offwego.ie (Avril) — Thu, 14 Jan 2010 18:22:00 +0000

Special Olympics Ireland is a wonderful organisation which benefits my son Stephen greatly. They have asked that I let you know about the following.

The 2010 Special Olympics Ireland Games will take place in Limerick from the 9th – 13th June.

Special Olympics Ireland needs 3,500 volunteers to help run these Games.

To hear how you can get involved in this exciting event, please come along to our forthcoming volunteer information session in the Strand Hotel, Limerick, on Monday 18th January at 7pm.

All are very welcome to attend!

Further details are also available on http://www.specialolympics.ie/ or by emailing limerick2010@specialolympics.ie

Hope to see you all there,

Avril

England’s New Autism Act: What we in Ireland can learn from it

avril@offwego.ie (Avril) — Tue, 12 Jan 2010 19:50:00 +0000

I was reading a very interesting article in the current edition of SEN magazine about the new Autism Act that has come into law in England. It is heartening that from a private members bill drafted by the National Autistic Society (on behalf of 16 autism charities) and lobbying by thousands, there is a new law in England that will make a real difference to the lives of those with autism and their families. It shows that ‘people power’ can really work and I think we could really learn a lesson here in Ireland. I suggest we should be looking for change for all those with disabilities including autism.

The emphasis in this new Autism Act in England is on adult services. In the SEN article, the introduction talks about how moving from children’s to adult services for people with autism, has often been likened to ‘falling off a cliff’. This is not just the case in England, services for post 18 year olds with autism and intellectual disabilities here in Ireland are appalling and are being further cut back. Here in Limerick we have teenagers who left school in June ’09 and still have no service available to them.

I am not comfortable with the word ‘service’, what I am talking about here is support for 18 year olds to do what they would like to do. It’s about choice, dignity, respect and quality of life. It is not about ‘shoving’ young people into already crowded training centres. All our 18 year olds, irrespective of disability should be supported to chose what they want to do, be that go to college, get a job whatever that person would like to do.

This new law in England means that local authorities and the NHS services will be legally obliged to plan appropriate services, provide diagnostic services, plan assessments for young people along with a number of other measures. For the first time ever, local authorities and NHS services who fail to provide appropriate services for adults with autism could face court action.

We need to not only be aware of what is happening in the UK, Australia, Canada and other countries, but also to learn and take action here in Ireland. In many ways the Irish government ‘have us’; as parents we are so tired from managing our day-to-day lives, we do not have the energy or time to look at international best practice. I am sick of hearing there are no votes in the disability sector and other priorities need funding ahead of us.

We should build on the excellent work being done by the ‘Taking Control’ group an alliance of a number of national including Autism LifeCare Trust, Down Syndrome Ireland, Inclusion Ireland, National Parents & Siblings Alliance, NIID – Trinity College, Partners for Change, who have come together to lobby government for reform see http://www.inclusionireland.ie/IndividualisedFundingRoadshows.asp (scroll down).

Together, with all our thousands of voices and feet we can ‘up the ante’! We have to stop the ‘those who shout loudest get services’ attitude and instead come together in one powerful voice. ‘People power’ passed the Autism Act in England and we need to be inspired by that to take real action here.

Best wishes as always,
Avril

Great Support for Autism in World of Social Media

avril@offwego.ie (Avril) — Fri, 08 Jan 2010 15:49:00 +0000

I have recently launched into the world of social media through blogging and Facebook. I spent some time reading blogs and just trying to get a feel for what’s ‘out there’. I have to say I am well impressed, there is a great sense of community and sharing! I look forward in 2010 to learning more and to getting involved and participating in this virtual world of support. Now that I have just discovered it, I’m kind of saying, why did I not do this months ago?!

Two particular blogs really struck a cord with me. Both are written by Mums of children with autism and their experiences.

Here, in her blog ‘Christmas Carols’, Rachel Nixon talks about bringing her daughter to Church and the stares and comments she gets. I often feel this when I’m out with Stephen. Stephen is handsome and you wouldn’t know immediately that he has a disability. But as Rachel says in her piece it is really important to let Stephen experience life as much as any other child. In many ways I think it is about me, being able to ‘chill out’ a bit and stop worrying about what other people think.

Petunia gives a great summary of her Christmas experience and how it’s nice to get home to our safe ‘normal’ homes after the hussle and bussle of family get-togethers! I have learnt over the years (Stephen is now 11) that it pays off to plan and prepare Stephen in so far as we can. Our other two Michael(age 8) and Rachel(age 6) enjoy helping me putting together pictures and photos to help Stephen understand what’s happening.

Anyway I just want to say well done and thank you to those Mums and Dads that are out there sharing their experiences on the web.

Best wishes always,
Avril

Being Prepared and Sticking to the Plan

avril@offwego.ie (Avril) — Wed, 06 Jan 2010 13:56:00 +0000

You would think I should know by now that if I tell Stephen we are doing something in so far as I can, I should stick to the plan. And if I need to change, I need a picture to let him know the new activity. I know I need to prepare and plan and yet sometimes I forget and pay the price.

Yesterday Stephen and I were going to pick up Michael and Rachel from the train station (they had been on a trip to Dublin to s ee the pantomime Robin Hood with their grandparents, pantomime was excellent!).

Stephen was excited to go the train station, he loves trains and even though Michael and Rachel were only away for one night, he missed them. We got to the train station early so I decided to pop into the supermarket and get milk and bread. However I just decided to do it on impulse and it was not part of Stephen’s plan. We got the bits in the basket and then had to wait in the queue. Stephen thought I had forgotten about going to the train and went ballistic (shouting and hitting) with me. I had to abandon the shopping.

Most days I’m fine but sometimes Stephen’s ‘special needs’ (we don’t have a diagnosis) get me. I was upset, all I wanted was to get some bread and milk and I couldn’t. Sometimes I get tired of constantly have to plan, prepare, have a picture, watching for triggers…a baby started crying while we were standing in the queue, maybe that contributed to Stephen’s outburst.

There I’ve said it, it’s hard.
Some days I need to sit on my ‘pity pot’. And then I have to kick myself off it! Anyway onwards we go, learn the lesson and move on.

Best wishes as always,
Avril

Happy New Year

avril@offwego.ie (Avril) — Thu, 31 Dec 2009 21:26:00 +0000

Just want to wish you all a great 2010!

We have had a good 2009, one of the many highlights was Stephen’s drumming performance in front of a packed University Concert Hall.

Roll on 2010 and let’s see what it brings.

Best wishes as always,

Avril

Media Coverage Dec 2009

avril@offwego.ie (Avril) — Thu, 31 Dec 2009 16:54:00 +0000

I mentioned a few weeks ago about some of the media coverage I have been getting as part of winning the 4FM "Doing it for themselves" competition. I want to thank Joanne Leahy at Unique Media, who has done a great job at helping me spread the word about my books.

As well as a number of smaller articles the following are the main pieces on me in the press over the last month.

Sunday World, Dec 13th - journalist Helen O’Callaghan
The Irish Sun, Dec 15th - journalist Aoife Bannon
The Irish Times Healthplus supplement, Dec 29th - journalist Lorna Siggins

I am also hoping for a piece in the Irish Daily Mail in January so keep an eye out for that.

Thanks again to Joanne for all her help.
Best wishes,
Avril

Off We Go on Facebook

avril@offwego.ie (Avril) — Mon, 21 Dec 2009 14:46:00 +0000

I took the plunge and got myself set up on Facebook last week. I’m just getting the hang of using it. My husband Robert is laughing at my nervousness – normally I never stop talking and in Facebook I have the opportunity to ‘chat’ to lots of people and yet I am afraid something will come out from my computer and bite me if I make a mistake!

Anyway, I’m delighted to be up and running on Facebook. It is fascinating to see faces and names of school and college friends, and the memories that come flooding back!

I look forward to meeting lots of old friends and making new ones through this incredible network!

I have also setup a page for Off We Go! so please check it out and become a fan to keep up to date with what we are up to. Here's a link to it:

Wishing you all a very Happy Christmas and great 2010,
Avril

The Impact of Budget 2010 on the Disabled Community

avril@offwego.ie (Avril) — Thu, 10 Dec 2009 17:58:00 +0000

I have been looking at the budget fallout today for our family and our son Stephen who has special needs.

On the positive side, thankfully the domiciliary care payment that we receive to help pay for some of Stephen’s extra expenses, looks like it is not being reduced.

It saddens me to see the €2.3m reduction in funding for National Council for Special Education.

No doubt about it, those reductions in the area of carer’s allowance and disability benefit will have a strong negative impact on the quality of life of those with disabilities and their families. Cuts to their benefits of carers make no economic sense, these cuts will most likely result in some carers not being able to afford to stay caring for their loved ones and as a result the state will have to take on this responsibility, which will not only reduce their quality of life but cost significantly more.

We will have to wait and see what the implications are with the reduction of nearly 5% in the HSE's budget but no doubt we will see a further reduction of services.

It is hard to swallow that the National Disability Authority who write reports on policy have had their funding increased by 23%, while services are being reduced, this government seems to be more interested in writing reports than taking action.

Overall it seems to me we are going backwards instead of forwards in empowering those with disabilities to partake fully in and contribute to our society. We need to keep the pressure on government to look at changing the whole model of funding in this area to give better value for money and better choice and quality of life to those with disabilities and their families.

Check out this interesting blog post on Mamam Poulet and Inclusion Ireland's website for excellent commentary and analysis.

Best wishes as always,
Avril

In the media again

avril@offwego.ie (Avril) — Fri, 04 Dec 2009 16:39:00 +0000

As part of the 4FM "Doing it for themselves" competition I won back in September, I have been working with Joanne Leahy at Unique Media and she has done a great job getting me coverage in the media.

Today I had another interview with Joe Nash on Limerick's Live 95FM and as well as talking about my books we talked about the worries I have about the budget next week and how it will impact the disability sector. You can listen to the interview below:

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I'll let you know about some of the other print media coverage Joanne has helped me get next week.

Also for those who missed it while it was up on RTE Player, my TV piece from The Afternoon Show on RTE back in October is up on YouTube now so you can view it below. It's a good way to get an understanding about my books and how they can be of benefit.

{qtube vid:=_rUuC53L5wI}

I'm off now to see my sister in-laws new house in Lehinch for the weekend so looking forward to getting some sea air, just hope the rain stays away for a while to get out for a walk on the beach.

Best wishes,
Avril

Off We Go Illustrator David Ryley

avril@offwego.ie (Avril) — Mon, 30 Nov 2009 13:56:00 +0000

I have been meaning to tell you about David Ryley the very talented illustrator who did all the pictures in my Off We Go! books. Not only is he a wonderful artist, but he also has a great interest in helping children with special needs. It has been my pleasure to work with him, we have had loads of fun creating the stories and needless to say David has lots of patience to bear with me! It an interesting process to start with literally a blank page and build up a set of characters and places they visit and eventually turn it into a picture story book. See pictures included here.

Pictures are a great way to communicate with children with language delay. I always have pen and paper around, although I cannot draw at all, even some match stick men and a line drawing of what you want/where you are going really helps to get the message across! I think we are only beginning to understand how we are all different and for many people words can be very confusing and it’s ok to have other ways to communicate.

For more information on David see his website.

Best wishes as always,
Avril

Funding of services for children and adults with disabilities

avril@offwego.ie (Avril) — Mon, 16 Nov 2009 12:45:00 +0000

I am learning about different systems of funding for children and adults with disabilities. I am trying to understand this a bit better so that I can help improve the way we get services in the disability sector in Ireland. It’s daunting to look at this as it is hard to get your head around how it all works at the moment.

From my understanding, in Ireland when you have a child or adult with a disability, the Dept of Health pay what they call a ‘service provider’ to give support and services. This service provider gets paid to give your child things like physiotherapy or speech and language therapy or for an adult to be part of a supported training centre.

At the moment all money is given directly to this service provider. The family have little or no direct say over who gets the funding for their son or daughter or what it is used for. E.g. As Stephen’s Mum our family have been ‘customers’ in this area for 11 years and I have never been asked what is being done well and where improvements could be made.

In other countries individuals and families have choices available to them with regard to funding. In some cases, they use a system called ‘direct funding’. This means that the money is given to the individual and family, they then ‘buy’ the supports they need from service providers. The families are not left are their own, they are helped and supported to get the best for their family member. What is really interesting particularly in our current economic situation they are two major benefits:

Better choice and quality of support for the individual with a disability and their family
Costs less for the government/tax payer to provide services

I support Inclusion Ireland and the other disability groups working in this area to try and change government policy. For more information see here and scroll down for detail

Best wishes,
Avril

Another new experience in the media world!

avril@offwego.ie (Avril) — Thu, 05 Nov 2009 13:06:00 +0000

I went to 4FM Radio Station last week to record my radio commercial (this is part of the business prize I won in September). My 8 year old son Michael came with me, he is kindly helping me out allowing me to use his voice as part of the commercial! We met Mark Robinson at 4FM and he gave us a tour of the studios. We met broadcaster/DJ Jimmy Greally who was on live when we were there. Michael was very impressed with all the computers and gadgets! We were then taken to the recording area, we had to talk into a special microphone and wear headphones. It’s a bit weird hearing your own voice! Then Mark showed us how he mixes the ‘sound bars’ using the computer.

4FM Radio Station is a cool place to visit – everyone made us very welcome and were happy to show us ‘behind the scenes’ and explain how radio works, making it a really interesting experience! Tune in to 4FM, it’s a great station and if you are listening at the end of next week you might hear our Off We Go! Radio commercial. For a sneak preview listen below.

{play}images/mp3s/4FM_OffWeGo_Ad_091102.mp3{/play}