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These tips have been contributed by other parents, carers and professionals. We hope they will give you some ideas to try, but if you need further help why not post a question on our forums or talk to our site experts.
Early support resources
The National Childcare Bureau have produced a number of early support information resources. These explore specific conditions including autism, neurological disorders as well as undiagnosed and general topic-specific information such as sleep, SALT and childcare. NCB early support resources list
Friendship
My son can't make friends but he totally loves our dog, she keeps him occupied and happy which is a godsend Dogs for the Disabled
A positive note
When you have a child with extra needs, filling in forms can be very depressing as you focus entirely on the negative. So I write on a separate sheet of paper one good point for every negative. I laminate this and put on the fridge so that when things are tough I can read it and remind myself of the fab things about my 3 disabled children.
Best interest decisions
Working with with Irwin Mitchell Solicitors, Ambitious about Autism, Mencap and the Challenging Behaviour Foundation have created two template letters for parents who are concerned they are being excluded from decisions about their adult son or daughter's social or health care. Find out more & download the letters here
Shared experiences helpline
The NCT has a 'Shared Experiences Helpline' which can support you by putting you in touch with a volunteer who has had a similar experience during birth or early parenthood, and giving you the contact details of other relevant organisations. The helpline no is 0300 330 0700.
Challenging a refusal to assess for services
This leaflet has been produced by the Every Disabled Child Matters campaign to help families with disabled children challenge a refusal to assess their child for specialist service. Challenge.pdf (141.7 KB)
Me book
Fed up of explaining your child's needs over and over? You can buy a bound 'Me-Book' especially designed for people with learning disabilities and personalised for £19.99 from MEWE PRESS on 020 7993 5308.
100 Day Kit
This is a very informative publication created specifically for newly diagnosed families to make the best possible use of the 100 days following their child's diagnosis of autism. http://bit.ly/rrxJqk
Family Companion Films
The Family Companion Films have been developed to support parents of children who may not live to adulthood. The stories are told by parents for parents. Family companion films
After diagnosis info pack
Unique has produced a very useful pack for parents, whose children have recently been diagnosed with global developmental delay and/or rare chromosone disorder. After diagnosis (1.1 MB)
'Can do' attitude
I went to an Autism Anglia conference a few weeks ago with a speaker who himself had Autism. I asked him, as a mum with a son with Autism, what is the best thing I can do to help him? He said have a 'can do' attitude, there's no such thing as 'can't do'. This man was given the tools to be independent and that was the greatest gift his parents could give him.
Keep a diary
I am a father, with an autistic son. My top tip is to make a diary of your child's progress. Autistic children will concentrate longer on one thing than another, so you can use your dairy to evaluate what works best. Having a diary of a child's progress at home will also help with conversations at school. Encourage your school to take part in your diary of your child's progress.
When things go wrong
When services or support for a relative go wrong, it can be very difficult to deal with. The Challenging Behaviour Foundation has brought out a fact sheet of useful info and organisations that can help you make the right decisions. Fact sheet.pdf (92.9 KB)
Cool2Care
If you're looking for a personal assistant or care-worker to support your child or young adult, Cool2Care can provide someone for a few hours, a day, weekends or full-time, depending on your needs. www.cool2care.co.uk
Get all the help you can
I would suggest parents try every bit of help on offer - Portage, Child Development Centres, Surestart Centres, local libraries, health visitor, support groups, etc. It's much easier to opt out than to try and opt in later, when your child is older. Referral for specialist services (eg: portage) can take ages and is worth getting sorted out as early as possible.
Mans best friend
My teenage son is unable to make friends or engage with people, we recently got a dog for ourselves and it turns out the dog and my son have become the best of friends. We didn't get a puppy and have a clever friendly female border collie who hangs around him and trys to play with him which he really likes.
Caring with confidence
I have just completed the “Caring with Confidence Course” http://bit.ly/d74nA8 run by the NHS which includes important aspects like how to cope with finances, the care system and manage your time. I can now see that all three of my family require my assistance for completely different reasons and being a full time Mum is hard work and rewarding!
Keeping sane!
Maintain what ever keeps you sane – in my case work!
Never bow to the be-grudgers – being a working mother does NOT cause Downs, Autism or any other disability (despite what a number of my nearest and dearest and completely unqualified to comment happen to believe) and the ability to get out and ‘play’ might just be the thing that helps you keep it together.
Remember to try again...
When you do find something that works it is all too easy to stick to it, especially as many of people are not able to communicate “move us on”. Just a little example – when my son couldn’t chew pasta - I always said he didn’t like it. Six years later he had pasta at school and managed really well! Keep going back to try things that have failed in the past – not always easy!
Special equipment should work for both of you
Special needs equipment needs to suit two people – the person AND the carer! Manufacturers please take note that carers are not all the same height, are not weight lifters or have the ability to unscrew bolts with their bare fingers!! If the equipment doesn’t work for the carer it just won’t get used, so make sure it suits you as well as the person you care for!
You can be an appointee
For parents/guardians/carers who have family members receiving benefits who struggle to access information regarding their benefits on behalf of them they should be made aware that they can be made appointee of the individual.
Friendship
One of my sons is a mentor with Befriending for teens with Learning Difficulties and Specials Needs. This experience has been not only great for my son, but also the people being mentored and their families. The families were happy their teen could go out bowling, cinema, swimmng or other activities with a mentor. Please do check out the befriending scheme through social services or local Childrens’ Services department. They can provide other group activities and opportunities.
Feel good!
Wear lipstick ….always! In good colours – preferable expensive!
Toe nail painting is also very encouraging.
Letting teenagers go.......
At 17 all teens want independence. It is really hard to let go, when you have done so much to protect them but you need to let them make some of their own decisions.
When you are on your cloud
There are a group of older parents who have got together and share the costs of a full time social worker, who oversees the care of their children. The idea is that after they die, the siblings can continue to pay for the social worker to oversee the care of their dependent, so the siblings don’t have to take over parenting.
Parent time together
If you can, make sure you and your partner have ‘you time’ time together without any of your children. It is really important not to forget each other and to keep your relationship strong.
There is a difference
Don't listen to parents of other children who say "Oh, all children are fussy/obsessional/stubborn/lose things etc..". It will drive you mad. Aspergics are different and yes all children do display these same characteristics but it's about the DEGREE to which they do it that makes the difference and is so hard to explain.
Team work
Consider yourselves as a team and try to work together if you are a couple - so many families split. Get your partner involved more .
A good face
Don’t be a ‘disabled family’. It’s hard not to 'bore' all friends and family with your special needs life - try to make time for them as well sometimes.
It's ok to ask for help.....
Don’t be concerned about asking for help – to my surprise I have found that friends and family don’t offer to help but are very happy to help if asked (I don’t ask too much only when I really need their help).
Me time!
Try to make a little quality time for yourself each day even if this means leaving the person you care for in front on their favourite DVD or TV program for half an hour. It won't do them any harm!
Me time 2!
Make sure you schedule in ‘me’ time. Have at least half a day a week off – book a babysitter, book your child into a crèche/playscheme, play date, or family – give yourself that time to re-charge. (Aukids).
Yoga for you
Take up Yoga to stop muscle injuries especially if you have to do lots of lifting and carrying.
Critical relatives
My parents are from the 'She must Eat What She Is Given' school so I feed Paula earlier than everyone else so there is less opportunity for upsets all round! (Sometimes a picnic can also be a good tactic as everyone eats with their fingers and it's easier to relax a little).
School
A good teacher will boost the status of an aspergic child in class by promoting their special knowledge and excellent memory - as the person to ask when you don't know something !
>> Single parents <<
Separated parents?
If you're divorced or separated going to stay in different homes for visits gets very difficult - some parents choose for their child to stay at home while the parents move in and out. Much easier for someone with learning difficulties to cope with.
Grants and funds
Always google for grants and funds before you pay for anything. Sounds cheeky I know, but you probably have limited funds and the money you can save by being on a lower gas tariff can help fund those little extras that make life that tiny bit easier.
Travel grant
For the big and expensive days out, check online for charities or grants that could be available to help with costs. The Merlin group has such a fund that will pay not only for entry costs but also travel fees for a trip to any of its attractions (merlin magic wand) most of the big groups have similar. www.merlinsmagicwand.org
In the same boat....
I met a single mum who shared a flat with another single mother who had a special needs child. This meant they could help each other and could both get time out occasionally while one looked after the other's child.
Emergency help
If you are ill or due to go into hospital , often close family are unable to help if you need them to care for your special needs child. Contact social services as you may be able to get some respite...which can be a lifesaver. Everyone is entitled to respite through social services.
Local colleges
I rang every local college and university to find out if they had any students on child care courses who needed placements with families. As a result I had 3 students per week, one of whom came out for 2 days and the other 2 for 1 day each. It was fantastic and saved my life.
Homestart
We referred ourselves to Homestart. They are a nationwide voluntary organisation who send some one to visit families in their own homes to offer support, friendship and practical assistance www.home-start.org.uk . Our lady was brilliant.
Free creche
I found that there is a local group offering free courses with a free creche if you take the course. They also offered the creche for up to 2 hours at £1 per child if you are not on a course. This was such a life saver .
Join a support group
I sometimes attend a local special needs group. It is a place where parents/carers feel supported in their common problems/difficulties. They can pool their knowledge /borrow various specialised books/ learn new things or just have a coffee and a chat. Children are also welcome.
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