We had a great NAS Derby Branch meeting this month with a lovely young man who talked about his experiences of his own Autism, about his life and his special interests or as we sometimes refer to them as obsessions.
I'm sure a lot of you will recognise the pictures above if you have someone special on the spectrum. They are my sons main interests at present, yes they can change but for now we practice a lot of fire safety with Fireman Sam and put the world to rights with Thomas and Friends.
At the meeting it was lovely to hear from someone first hand about what makes them like certain interests and how it makes them feel. As a parent I know we always want to find the secret recipe of how our kids tick and get a good insight into someone else's autistic world. It was fascinating to realise that having these interests is not a bad thing but can in fact be used to encourage some skills in communication and develop certain social skills too.
We discovered that most of the time especially at school we tend to send our kids into one of the big major social situations to face in life. It is the first real place apart from nursery and play centres that we actually venture out and be sociable and talk to other people. But what if you can't and find it extremely difficult? Then situations like these become unbearable and in some case impossible.
So what if the autistic world offered us a lifeline to make this easier and made people with autism feel relaxed, safe and secure? You would accept that wouldn't you? I have my own methods that I use to calm down and relax, it mainly involves popping my headphones on and listening to music. That's my happy place, that's where I feel the world can go on bustling about and I can free some space in my brain and just be transported into another place for a while. Then after that I'm ready to start again and bring myself back into the busy world again. It's our tools for recharging, some like to read, meditate, or be creative like drawing and baking.
I thought for a while at the age of sixteen that maybe it was time to stop buying Thomas and Friends magazines or stop buying Fireman Sam DVD's because they are not really age appropriate but who am I to decide that? Society does and that's why it seems a bit wrong but I'm not going to take away the things that make my son happy. Yes I can encourage him to spend less time on his interests and to engage in other activities now and again but these interests whether it be Minecraft, Lego, films, maps, music, or gaming are crucial to their lives and how they cope with situations.
I think in education there is a place for special interests to be used a lot, maybe limiting the time and using them in a constructive way and not destructive would be a way forward. Is it really a big deal if a child doesn't want to go out to play at break and lunchtime, playtime seems so last season now. For some yes they love to go and have a run round, chat and play games but for someone who has autism they can be using that time to let off steam in other ways, it could make their day and enable them to recharge and start a lessons. Nice thought eh?
Life is full of give and takes, well it should be so lets use that concept with autism. I spend time with my son and answer quizzes and Thomas and Friends, get put through my paces regarding fire safety even have a light sabre fight but I will always get some help with doing the dishes or other chores done if we divide our time between, what some may say, the boring stuff and the exciting stuff. It does get a bit repetitive and there maybe days when you don't want to 'Disney' but it does work. I have to remind myself to stop namby pambing (is that real?) to what every one else does and what the so called rules are in life and rebel a bit, make your own rules up and don't get stuck in society's boring old regime. Break away and have fun.
Anyway I'm going to break away now, thanks for reading and I will be back tomorrow with some TV chat on 'Pass the Remote Sunday'
Take care for now........
It's quite worrying isn't it? What happens after Secondary school and further into adulthood for our people with additional needs, learning disabilities and metal health issues. What are you talking about Sue from the Brew? It's a worrying time all of the time!!! I'm thinking in my experience of my son leaving the education path after 18 years old really.
I feel at the moment that I'm following the education system along with my son and it will follow a path until he is 18 which we have a plan for then after that we drop off a cliff and there is nothing for him to continue onto.
Well that's what I thought until I went to an information evening at one of our local education placements called Transition 2. It totally opened my eyes to the extent of what is actually out there, even provisions that I didn't know were available in my role as a volunteer locally for the NAS. I felt a sense of relief in that life wasn't going to come to junction and a one way street to nowhere it actually opened up into a spaghetti junction with so many roads to go down and choices we could make as a family.
Transition 2 (T2) itself provides opportunities for young adults with learning difficulties, severe learning difficulties , and/or autism aged 18-25. Learners follow individual learning pathways based on person centred long term targets. I loved this place and although my son has plans for another year, it would be something I may look at in 2018. Other educational opportunities were Key College which is part of YMCA Derbyshire which offer accredited training courses from the ages of 16 - 19years and even up to 24 in some cases. I never knew they existed so I will be passing all this information on within the support groups I provide.
The Padley Group in Derby also provide some great creative courses and there is Portland College in Mansfield which also offers a lot of opportunities for people with disabilities, even offering day or residential programmes so the choices have just widened massively for us.
There is also a wide range of places who offer day opportunities for those with disabilities and learning difficulties, offering short breaks and also support for the whole family including services for siblings. I will give you some websites to visit at the end of this post as there is so much information. All these services offer different ways in which to access activities, independence, general support, signposting to other possibilities and all looking beyond the persons disability giving them a chance to live their lives to their full potential.
It really did give me hope for the future and I know I am featuring services here which are available in Derby as it is my local area but if you do see one of these information open days available in your own area do go along. I'll be honest I have tended to ignore it and think that I can't be bothered but these people are there and ready to support our young people for years to come, one of the services even went as far as up to 35 years so that's incredible.
So thanks for reading and I hope this has helped a little. I will catch you back here tomorrow for 'Pass the Remote'.
Key College (YMCA Derbyshire) www.ymcaderbyshire.org.uk
Portland College - www.portland.ac.uk
Padley Development Centre - email firstname.lastname@example.org
Derby City Council Adult Learning Service - email email@example.com
Transition 2 - www.transition2.co.uk
Inspirative Arts - www.inspirativearts.co.uk
Funability and Moving Forward - www.stjamescentrederby.co.uk
Opportunity Knocks S&K Ltd - email firstname.lastname@example.org
Active Support - email email@example.com
The Enabled Centre - www.enabledcentre.co.uk
Derbyshire Carers Association - www.derbyshirecarers.co.uk
SENAD Specialist Education and Care - www.senadgroup.com
Some of these organisations do have Facebooks pages and but all the details you need will be on the websites, if there is no website just email for information and they will be happy to tell you what services are available if they are suitable for your young person or adult.
Take care for now and you need any more information, please leave a comment and I will be happy to help.
If you are raising a child with a disability or with a serious illness you really need to know about Family Fund. Established in 1973 by the UK Government the initial mission was to provide £3 million to help families raising children with disabilities with a promise of more money later. For twenty years the fund was part of The Joseph Rowntree Foundation but in 1996 it became an independent charitable trust. Now funded by the four UK Governments, charitable donations and income generated by Family Fund Business Services they have clocked up over 40 years and provided over a million grants for families.
Great eh? We received our first grant for a fridge freezer that had broken and things were a bit tight financially so when we found out about family fund we were so grateful for their help. You can obtain a grant to help provide essential items such as beds, bedding, kitchen appliances, computers, tablets, much needed family breaks and help towards hospital visiting costs. There is a criteria to meet for you to obtain a grant and there is so much information on their website at www.familyfund.org.uk I will just summarise some if the criteria for you taken from the website regarding disability as it does include information associated with Autism. There is also general criteria information here at www.familyfund.org.uk/FAQs/are-we-eligible-to-apply
Disability Criteria is as follows:
Children and young people must have a severe disability with additional complex needs, or have a serious or life threatening illness.
There must be evidence that the child or young person’s additional needs impact on a family’s choices and their opportunity to enjoy ordinary life. The degree of planning and support required to meet their needs must also be much greater than that usually required to meet the needs of children and young people.
They must require a high level of support in three or more of the following areas:
The physical environment
Access to social activities
Personal care, supervision and vigilance
Specialist resources, including information and communications technology, are required
Medical or therapeutic treatment and condition management
The child or young person’s condition must be long term or life limiting. By long term we mean lasting or likely to last 12 months or more.
There is no need to wait for diagnosis either so my advice would be to apply anyway, and just check whether you are eligible. I really didn't think we were at first and felt as if I shouldn't. I am a bit funny about claiming for some financial help as I just like to try to manage but you really are entitled to try it and it really does help with the impact of life when supporting our people with additional needs.
If in doubt always apply for anything really, they can always say no but unless to try you will never know. The people at Family Fund are really helpful as well so they will help to with your application. The grants are considered on an annual basis so you may apply again after a year for a child 17 years or under.
Family Fund also provide further discounts on Haven holidays, IT equipment at Stone Computers and extra savings at Inspire Travel. So if you haven't been awarded a break on your award you can still apply for extra savings. There is also 'Tired Out' which is Family Funds sleep hub. This provides information provided by organisations such as The National Autistic Society and Contact a Family regarding sleep issues and how to cope.
They really do provide a lot of help and support here so please visit their website and I do hope it helps you in the way it helped us.
Thanks for reading and join me again tomorrow for 'Pass the Remote'.
Take care for now........
The beginning of this month launched Volunteers Week running from 1st June to 7th June. I am volunteering in all sorts of ways at the moment. I am presently volunteering with the National Autistic Society within the local branch in Derby. I help run support groups, update the branch Facebook page and monitor phone calls which come into the branch.
I love to help other families and be there for any support or information they may need. I can remember way back in 2004 what it was like to be a parent with a son receiving his diagnosis and it was a scary, bewildering time. I don't feel I do an awful lot but sometimes just offering a cuppa, a biscuit, time and to listen to people, that's all that is needed. Oh and sometimes a box of tissues and a shoulder to cry on but that's ok, I can offer that if needed.
I am also a Parent Champion for the Family Information Service in Derby where we offer a wide range of information, advice and guidance on:
We, as parent Champions are all parents just like you and we understand the challenges you may face. We are around in the community, at local events and childcare sessions. I tend to combine my role within support with Autism by helping families access the SENDIASS (Special Educational Needs and Disabilities Information Advice and Support Service) in Derby.
I am also a Parent Governor at a local SEN school too so the possibilities of volunteering are endless and very rewarding. It keeps me very busy and I build so much experience in speaking to different people and having a voice within the world of Autism and disabilities in general. There is nothing quite like talking to another parent who is or has been through a similar situation to our own. That's why I think our support groups are vital to the well being of families facing a future with Autism that they are not quite sure of. I think we are able to offer reassurance and empathy and a platform to just let some stress out, to say yes it's not fair, yes sometimes I dislike Autism but eventually gaining some information that gives some relief and hope that a situation may improve or take away that tension even for a little while.
If you are interested in volunteering go to
where you will find many ways to volunteer on your local area.
If you are interested in becoming a Parent Champion in Derby get in touch with the Family Information Service on 01332640758 or email FIS@derby.gov.uk
The NAS Derby and District Branch would welcome more committee members so if you are interested please email them at firstname.lastname@example.org
The Parent to Parent Service of the National Autistic Society is a great service which is offered for help and advice and you can find information about this at:
To all volunteers everywhere and in all services have a great week and carry on your good work into the future. there are a lot of organisations that cannot do what they do without people like you so feel proud, you are doing a good job.
Thank you for reading, I will be back for some telly talk tomorrow with Pass the Remote.
Take care for now.........
Every Saturday will be about Autism, family and life.