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Thursday 27 Apr 2017
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Welcome to the Off We Go! Blog

In this blog I share my journey and experiences of being a Mum to Stephen, Michael and Rachel. I talk particularly about Stephen who has special needs (he has a rare chromosomal disorder). My mission is to support my kids to have full and meaningful lives. I want to raise awareness that it is ok to be different. It’s about valuing and including everyone.



Off We Go! launches apps with ITV Signed Stories PDF Print E-mail
Written by Avril   
Sunday, 14 July 2013

I am delighted and proud to let you know that I have recently launched some of my Off We Go! books as apps with ITV Signed Stories. Our son Stephen who has autism and severe intellectual/learning disability is really enjoying using them! As well as being a fun shared experience with a parent or sibling, they are also a great educational resource for the classroom.

Going to Buy Clothes, Going to the Hairdresser and Going to the Doctor are now available in British Sign Language and American Sign Language (not available yet in Irish Sign Language). Here are some of the images from the apps.

These stories cover activities that in many situations the child themselves can relate to. These books are like a road map to prepare a child and to show the child what to do in an everyday experience.They are particularly suited to children with autism and learning difficulties who often struggle with imaginative stories.

The app itself is free to download and you get ‘bookshelf’ with a free book. You can then choose which books you would like to buy to put on your ‘bookshelf’. Each book wonderfully signed and narrated. Some titles also have sounds and other animation. The iPad versions of the books also have interactive games included.

When you hear the word Signed Stories, you might think this app is for children with hearing difficulties, in fact it is a super app for all children because:

  • Storytelling is fun and a great way to learn
  • The signing and narration brings ‘human’ expression and connection
  • This app creates a great opportunity to talk about difference, disability and diversity
  • The games included with this app give an opportunity for us all to learn some signs

I am interested to hear what you think, so if you get a chance leave me a comment or send me an e-mail avril@offwego.ie

Best wishes as always,
Avril

 
Immersion Event April 2013 PDF Print E-mail
Written by Avril   
Monday, 06 May 2013

Inspiration, courage, support, kindness, relationships, positivity, hope, persistence – these are just some of the words ringing in my head after being part of the Immersion Event in Killarney last week. It was a week long event to learn, reflect and work through the changes in how disability services are/will be delivered in Ireland. The focus was on how we move from delivering services in a ‘group’ way to providing ‘individualised’ support. It was run by the Federation of Voluntary Bodies and it brought together 350+ service providers, government officials, people with disabilities, family members and others interested in disability sector in one place for one week.

It was an intense week of hard work; it was a journey in itself. I came away with my eyes opened in a different way in how I can better support my son Stephen.  I have spent many years focussing on Stephen’s disability and all the negatives that come with that. After my week at Immersion, I have learnt that it is time to change my focus, to truly look at Stephen as a young man in his own right, to really think about all the gifts he brings and how we can share those gifts with those around him (family/friends/community) by building strong relationships and connections.

All the speakers at Immersion were excellent. On the first day the context was set – it is not a question if things will change, government policy is clear - things are going to change significantly and there is detailed information available in a number of government reports and strategies. (Many listed here and here).  We had seven international disability experts who helped us with information and tools on how we can do things differently. John O’Brien, Michael Kendrick, Janet Klees, Patti Scott, David Pitonyak, Hope Leet Dittmeier and Pat Fratangelo are all leaders in best practice in the disability sector across the world. Their presentations were all videoed and well worth a look at when they go up on www.fedvol.ie in the coming days.

We got lots of detailed information and heard wonderful stories. We also got practical tools and things to change immediately. One of the most useful things I learnt was how to change how I introduce Stephen, instead of saying ‘here is Stephen who has an intellectual disability and autism’, to instead say ‘here is Stephen, from Limerick who loves the outdoors, he is very musical and loves to sing, he also sometimes finds it hard to understand and can be anxious in busy places’.

The best speakers of the week for me were the people with disabilities, who through courage and persistence have changed their own lives. Many of the stories we heard were hugely inspirational, of people living in institutional care who now have their own homes, jobs, friends, etc. all the usual things we take for granted. What struck me too was their gentleness and gratefulness, no anger or bitterness for years lost in care.

We were also reminded about being good community members ourselves. We are all part of communities and sometimes with the busyness of life, many of us have forgotten how to give and be active citizens.

The highlight of the week for me was friendship- having the opportunity to chat with others in a similar situation. The challenge from Immersion is how can we get the information we learnt out to people with disabilities and their families?  If we are serious about change to better the lives of people with disabilities, we need to look at many ways of connecting people and sharing information, so that change is driven from grass roots and in the right direction for people with disabilities and their families.

Best wishes as always,
Avril

 
Going to hospital with a child with autism PDF Print E-mail
Written by Avril   
Sunday, 03 February 2013

We all hear lots of nightmare stories about the HSE, but I want to share a good experience with you! Stephen, our 14 year old with autism/rare chromosomal disorder had a bad fall before Christmas. He does not have the reflex action to put his hands out so his mouth took the force of the fall. The result being that he badly broke his front two permanent teeth. He was already missing a front tooth from a previous fall. As we all know those front teeth are really important for eating and speaking, so we had to try and save/repair what we could.

Last Wednesday, Stephen had restorative dental treatment, including two root canals done at Roscommon County Hospital last week by Dr Keith Finn and his team. Because of the amount of work to be done, Stephen was under anaesthetic for over three hours. You can see from the photo here the great job they did. Every one we met went out of their way to help us, especially Eileen Goldrick, Dr Finn’s dental nurse.

As you can imagine, Stephen was very anxious and distressed and we had a hard job to get him to the ward and then on to the operating theatre. And of course he was fasting and could not understand why.

Here are my top tips on bringing a child with a disability/autism to hospital:

  1. Be persistent in finding for the right treatment for your child. It may take you a while to get the right doctor with access to the right equipment. In our case, root canal is normally done in a dental chair but for Stephen he needed to go under general anaesthetic, which a lot of dentists don’t have available to them.
  2. Phone in advance and explain that your child will be very upset and distressed. Organise to have the pre-med (medicine that helps make the patient relax and drowsy, sometimes they go a little hyper before it kicks in) written up by the anaesthetist in advance so that your child can get it the minute you go in. Stephen wanted to go home and the pre-med calmed him a little bit.
  3. Tell them in advance about any small things as they make a difference. E.g. Stephen is very sensitive to certain textures. We know from previous experience that he will not tolerate a hospital identification bracelet on his arm, no matter how tight it is put on he will get it off. The nurses on Wednesday were very understanding and left the bracelet off.
  4. Ask if there is a private room available on the day ward. Sometimes this is not possible, but it makes a big difference if you can get it. Stephen was shouting and would not go near the bed. Eventually, he sat on the chair.
  5. Ask the staff to screen off the sink area/water fountain and make sure you do not see food or drink. Sometimes there are patients coming back from theatre getting tea and toast and your child must not see them.
  6. Do not underestimate how much the experience will take out of you – on a physical level it took all of my husband’s strength and mine and the theatre staff team to hold Stephen as he went under anaesthetic. Going into an operating theatre it is a very daunting and overwhelming experience. Stephen would not let them numb the back of his hand or put a line in his arm. As you are holding him down and they put the gas mask over his face, it is very emotional and you have to get through it. It is very scary watching your child going under anaesthetic. Stephen has had lots of anaesthetics over the years and it is always very hard.
  7. Go for coffee and a walk around the hospital while the procedure is going on. Distract yourself as best you can. Make sure you are not on your own.
  8. Ask if you can go to the recovery room to be there when your child opens his eyes. Normally you are told they will bring the child back to the ward and you will see them there. We have had the experience in the past where as soon as Stephen opened his eyes he got extremely distressed as he did not know where he was. He jumped up, ripped off monitoring devices and pulled lines out. They let me in on Wednesday, so that as soon as he started to come around he saw my face and it helped keep him calm.
  9. Bring along your child’s favourite food and drink for afterwards.
  10. You will be exhausted for the few days afterwards, plan in some time for you yourself and a nice treat!
Best wishes as always,
Avril
 
Where is our government’s social, moral and human conscience? PDF Print E-mail
Written by Avril   
Saturday, 08 December 2012

My outrage and anger continues this week with the announcement by our government in their annual budget to cut the respite care grant for carers by 20%. As a carer of my son Stephen who has autism, I cannot accept the choices our government is taking. Where is their social, moral and human conscience?

Following from my blog last week and discussions in our Dail chambers where our Taoiseach talks about protecting the disability sector – we need to ask who is he protecting? Yes there is €1.4 billion going into this sector but not to people with disabilities and their families. We need to make the distinction. The recent Value for Money report published by government shows the ‘bad’ value for money that the taxpayers of Ireland are getting for this €1.4 billion. But this is not just about money - is there any commitment in our government and policy makers to change or are we going to keep ‘protecting’ the old expensive system that does NOT deliver value for money?

For all the talk of reform by our Minister responsible for disability services, Minister Kathleen Lynch and the move to an individualised/personalised budgeting system where the person with a disability and their family have influence over where the €1.4 billion goes, it seems she is not willing to ‘walk the talk’ or put pressure on the sector to give us a voice. She is too busy ‘protecting’ them. The respite care grant is one of the few payments that is made directly to the carer/family so they can choose what is best for their family/family member. So instead of protecting and increasing this payment, they actually choose to slash it.

I suppose it links into the attitude of our government which we can see in the language they use. They don’t really believe we are equal citizens, with equal voice and equal vote and that is why they think they will get away with further cuts and reductions.

Listening to the carers who demonstrated outside the Dail in Dublin, in Ennis and other places this week, I was inspired by their stories of generosity, love and human spirit. People who give every hour of every day to a loved one. But we have had enough, the Irish government needs to change their attitude and reverse the decisions taken last week.

 
People with disabilities and their families should be ‘grateful’ PDF Print E-mail
Written by Avril   
Tuesday, 04 December 2012

I am incensed and outraged by the comments of our Taoiseach (Prime Minister) Enda Kenny in the Dail last week. As a parent of a 14 year old with severe autism, I know that his statement that "Persons with a disability, despite the economic circumstances we face, have been better protected than any other sector" is completely untrue. Everyone with a disability and their families has been hit badly with cut after cut.

The remark that really shows his attitude is in his reply to Micheál Martin when asked about funding for school leavers - our Taoiseach replies as follows; “I make the point to Deputy Martin that we should be very grateful to the service providers who do an extraordinary job with limited circumstances.” It is clear that Our Taoiseach and his government do not see people with disabilities as equal -citizens of this country. The week before last week, I walked in solidarity with thousands of other family members and people under the banner of the Disability Rights Coalition to say “Rights, not charity!” - stop seeing us as weak and vulnerable and give us the supports to have ordinary lives.

The service providers are well paid and have various bodies and agreements like Croke Park to protect them. We do not have any protection. Cuts are made without consultation. Some service providers are doing a good job, many are not. There are no standards, there is no competition, there is no ‘customer’ focus, we have no influence on where the €1.4 billion, that Enda Kenny quotes regularly, is spent.

Specifically on funding for school leavers, there is no right for any 18 year old in this country to have further education, yet we as a country rightly choose to fund third level education and access to other colleges. If the Taoiseach came out and said he was stopping all funding to education over 18, there would be outrage. Yet we had a group of young people with disabilities who left school last June who were told, “there is nothing for you”. And Enda Kenny maintains that they are “better protected”. Again, the leaders of this country do not see people with disabilities as equal citizens. Shame on them. Is our next stop the European Court of Human Rights? Shame on you, Taoiseach Enda Kenny.

 
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About Me

I’m Avril, married to Robert and I’m Mum to 3 kids, Stephen, Michael and Rachel. Stephen has special needs (he has a rare chromosomal disorder). We can see he has lots in common with children on the autistic spectrum and children with down syndrome. As well being a Mum, I’m an advocate/lobbyist for those with disabilities. I feel strongly about the importance of including Stephen is as many everyday activities and I have created the Off We Go! series of books to help Stephen and kids like him manage with everyday events.

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