Friday, 23 November 2012
22/11 Lessons learned - practical and sensible!!
This bit may only be relevant to some, but if one person finds a helpful resource then its worth sharing.....If you survived reading the last post on emotional milestones, then here is the next chapter. This time I have a fine glass of red wine in hand while writing, so it all flows a lot smoother! I was talking about things I have learned over the years that have helped me be a better parent. There is the emotional journey, but there are also strategies, services, and solutions that can quite simply make life better. Now this is a tricky area, as I have stumbled upon some wonderful services along the way, which while I am very happy to share, is very specific to each area, town, county or country. But please don't be put off by that. I have also realised, every area is different, and they all have different things, so it should never be a case of 'I wish we had that'....you may have something different, or more importantly - do something about getting the service you need. I am really motivated by a special woman in Scotland who was the first to set about getting an autism assistance dog. She heard about them in the US and Canada, and said she thought it could help her son. And after research revealed no such service was provided in the UK, she approached a charity, and made it happen. Services and solutions do not have to be established, anything in your imagination can happen. But plenty is out there, and these are things both practical and useful that I have discovered over the last five years that worked for us, and I wish every parent knew about :
National Autistic Society - (www.autism.org.uk) is the singular best online resource for Autism. Now there are too many other good charities to list here, and for other conditions, there will be their own dedicated charity that works in the same way. I have a lot of time for the NAS. Their website is a great first stop shop for anyone with questions, for those on the spectrum, parents, relatives, teachers, professionals. They also provide a full reading list of books that you can go on to research further. Our particular benefit has come from the courses they run. My husband and I attended a 12 week programme for parents with newly diagnosed children called 'Early Bird' which gave us information and strategies to cope. We followed this up with the excellent Help! courses. Help! 1 gives a generic overview, and Help! 2 are specific courses on topics such as Sensory needs, Toileting, Siblings, and Anger Management. We were so empowered by the information and support from the NAS, that Dave ran the London Marathon, raising over £4000 to help other parents benefit in the way we did. You can access these courses by self referral from their website, and receive information and further resources if you become a member. Other charities well worth being aware of are: Contact a Family, Scope, Cerebra and so on.
Local Charities - you cannot get by without the great work done in your community. This comes in many shapes and forms but for us has been a particular charity called OJ's Care (www.ojscare.com) who meet the needs not only of those on the spectrum, but also their siblings and families. There are great local groups who can be a lifeline, and worth giving them a try to see if they suit your needs. Don't give up if you go to a local group and get your fingers burned. I have had some very dodgy experiences over the years, but keep trying till you find groups that are your sort of people, and feel right. And if you don't find the right group, think about setting it up :)
Hanen's More Than Words (www.hanen.org) - another course over 12 weeks Dave and I attended, giving invaluable information on communication. This was on referral by our Speech & Language therapist, who run the courses. This enabled us to understand how to communicate with our non verbal son and support his needs.
Portage (www.portage.org.uk) - I found out about this a little too late. I am not sure how we got referred, but it happened late on for me, though I hear nothing but great reports from parents who had longer involvement. Portage is a home visit educational service for pre school children with additional needs. Learning through play - an awesome way to give your children the early intervention start they need.
Parent Partnership (www.parentpartnership.org.uk) This may be luck of the draw, but for us, our wonderful Parent Partnership officer (yes Russell, I mean you!) has guided us through the entangled web of educational support, helping us navigate how to get the right support our children need. Their knowledge of the system is essential, as a PhD on the subject would still leave you lost. These guys help with advice, form filling, looking at schools for additional needs, and attending key meetings with schools.
Carers Centres (www.carersuk.org) - the link is not quite accurate here, as every area has its own Carers Centre (just google your area), but the Carers UK website is also full of great information. A Carers Centre is a perfect central point to get local information, support and be part of the network to help you and understand what services are out there for you, your children and young carers in the family.
Scope Face-to-Face scheme (www.scope.org.uk/face2face) I have already talked about this on my blog, as it an intrinsic part of where I am now. It is a scheme I have benefited from both as a user, and now as a volunteer befriender. It is for me a scheme like no other that deals with the emotional journey as a parent. All volunteers are parents of disabled children, who are paired with a parent who they befriend. It is essentially a listening service, like a coffee and a chat with a friend, but that person is someone who understands your world. I can't do it justice in a paragraph, but something I am very passionate about.
Support Dogs (www.support-dogs.org.uk) Really?! If I have to explain why this is so awesome you have not been reading this blog!!! Life changing - enough said!!
Prescription Nappies available from 4 years old - Frustratingly many parents are not told about this till much later. If your child is still in nappies, from 4 years old you can receive nappies on prescription. We were referred via our specialist health visitor, but a doctor, health visitor or incontinence nurse should all point you in the right direction. Its a tough service to access. In our area they try and limit them to 4 per day!! Shocking as you can't buy them in shops, and often need more, so we still haven't worked out what you are supposed to do for the remaining part of the day - don't get me started on this subject. Only today I was with two parents discussing their fight to get enough nappies for their teenage children - really?? Would you give a heart patient enough Warfarin for 3 weeks, and expect them to just make do for the last week?? Aarrggh...spot my bug bear :)
Education Statement and self referral - You can self refer if you have concerns over your child. Parents are often lead to believe a professional has to refer. Parents can ask for assessments in many situations. You can also phone services like Educations Psychologists directly and speak to someone. Don't be scared to go direct to the person you think you need, and if they need a referral, they will tell you how to get it. You won't be offered things without digging deeper yourself.
Social Service Assessments - Every carer is entitled by law to a Carers Assessment by Social Services. There are lots of barriers to access this service, but knowing your rights are imperative This is not the same as a Core Assessment, which is an assessment of the person in need, to identify their core needs, and if these are being met. There is no onus on social services to provide support unless the assessment identifies core needs that are not being met elsewhere in the community or by other services. This is a complex area, but an awesome resource is written by one of my personal heros, Luke Clements, a Professor of Law at Cardiff University who specialises in Disability Rights. He has produced a free guide of Carer Rights which can be downloaded here www.lukeclements.co.uk/downloads/update1-jan2011.pdf For me the information contained in this document is essential reading.
Welfare Rights - A fantastic service, but I am not sure if it exists in the form I knew it as. We had an office where you made an appointment to see a Welfare Rights officer, and they impartially gave you advice and helped you with form filling for welfare needs. We sought advice over mobility issues, and it gave me a very different perspective of how the 'system' works - its not logical!! May be worth a Google if you are trying to navigate the world of Welfare support.
Carers Benefits - I don't like talking money, as this should not be about benefits, but the one thing I didn't know about was Carers Benefit. As a Mum it would never have occurred to me to think about this, as I thought being a Mum was my job. But I was given advice I should apply as a Carer as I could not work because of my sons needs, and therefore would not be eligible for state pension in years to come. This benefit, whilst in no way could support us, does provide me with 'stamp' credit to receive state pension on retirement, as I will have no personal contributions. It sounds odd, but as a carer, getting to mid sixties can be a scary time, when you realise your caring role has put you in a very dubious place financially. This should guarantee a small state pension when the time comes.
CAMHS - Child and Adolescent Mental Health Services. Some of you may be spitting out your tea at me daring to mention this service. It is part of the NHS, and to say delivery is variable would be putting it mildly. But we have had a very positive experience, and they are a great resource for courses, support and guidance. We have used them to help with Anger Management programmes, behavioural challenges, sensory profiling (priceless!) and sleep issues. If you can get access, and it works for you, having these people on your side can make a big difference.
Strategies - Great tools you could have in your kit box of tricks -
- Social Stories (course run by Speech & Language therapy, DVD also available),
- PECS (Picture Exchange Communication System),
- Visual timetables,
- Timers, (sand, traffic light systems etc). Lots of special needs versions available
- A DVD cartoon and film to help people with learning difficulties toilet train is Tom's Toilet Triumph made by the South Australian government. I can't find a direct weblink, and my kind sister-in-law living there bought if for me, but a really great resource, hard to come by.
- Signing (Makaton or Signalong). Signalong DVD's such as Singing Hands are a great start, as well as Makaton from Justin Fletcher and his Something Special series.
- Sensory Toys and equipment, can come from main suppliers like Rompa and Spacekraft
- 'Apps' the range of apps for ipads etc for learning is just unbelievable. Google it, but our personal No.1 favourite app for the kids is the Sesame Street interactive book A Monster at the End of the Book :)
- Puppets - never underestimate the power of non direct communication. Kids respond so well to a puppet, and many a time they not only entertain, but can have a response where direct communication fails.
I have to stop somewhere, but that is just a list of things we have used or benefited from. I wish all parents were told about some of this stuff when they first find out there are issues, but we are all left to fend for ourselves and pick it up as we go. So this is my clumsy attempt to write some of it down, and hopefully it may open a door somewhere. A word of advice if I may be so bold. As you are aware the internet has its garbage, and for a parent desperate for answers there are some websites that can lead you down misguided paths. Don't believe everything you read, the quality of source material is essential. There are no elixir potions to be found, miracles to believe in, no secrets to reveal, just reality. So if anyone makes a claim that seems a little far reaching, it is probably worth taking it with a pinch of salt and giving it a wide berth.
I need to pay more attention to this Shiraz now. Tomorrow is graduation day. Excited and nervous. Lucie will be grand, but how I will keep two children contained in a room for 5 hours is anyones guess. So I will be using some of those tools on my strategy list. Ipad, sensory toys, support dog, valium....yep that should be a good start.
Posted by Alice Boardman at 21:02