Carers go free – holiday ideas

It’s pouring with rain. It doesn’t feel like June at all. But the ‘summer’ holidays will soon be upon us.

It’s hard to keep children entertained all summer. I know they say that it’s good for children to be bored as it makes them think creatively about what to do with their time.  But, personally, I think one of the reasons my boys have improved so much is that we expose them continually to new ideas and activities, different experiences.  Of course, we still visit lots of tried and tested favourite places as we do like routine!

Firstly and most importantly. Admission charges.

Many places will offer discounts to children with special needs. In our picnic backpack, we carry copies of the boys’ EHCPs – the pages with their names on and most importantly, the page stating their disability. You need to prove that your child has autism. We also have letters from our GP stating that they need a carer with them. PIP awards or DLA are also good documentation to show. Finally, our borough supplies photo cards via social services. In London, if you qualify for free travel with a Freedom Pass, this also works as photo ID.

I learnt the hard way in the early days when I did not realise we could get discounted entrance. I remember taking the boys to the London Acquarium. The twins were nearly four and Hector, was just one and at that stage had not regressed into autism. He loved it and was happily pointing at fish and shrieking with delight. The twins meanwhile were freaked by the underground darkness. Sensory overload kicked in, they lay on the floor in meltdown and we only managed to stay half an hour in total. A very expensive outing.

So I don’t feel bad about getting discounts. Often our children do not get full use of their entrance ticket price.

CEA cards cost a £6 admin fee and entitle the holder to a free carer ticket every time they go to the cinema.  Some cinemas offer autism friendly screenings where the lights are not turned down so low and no one minds if your child is unable to sit quietly in their seat. We are all in it together at those screenings. We did those for many years as practice until finally , the boys could tolerate sitting for the duration of a film. They have always loved going to the cinema.

ZSL London and Whipsnade zoos offer free entry to a carer with any child who is  disabled. We have annual passes as it works out much more economical over a year. At Whipsnade, there is also a steam train ride (much loved) for which you can get discounted tickets too.

Merlin passes cover a range of theme parks and attractions . If you buy an annual pass, you can get a free carer pass to go with it. Each park seems to have a different system for those with autism to try and prevent them standing in long queues waiting to go on a ride. Ask at the guest services. One year, I met a family who also had a son with autism waiting at the exit of the train ride in Legoland and we have been friends since.

Carers do not have to be named or the same ones to accompany your child. With the zoo and merlin passes, the child’s photo is on them and so whoever accompanies that child can be the carer who goes free.

A few theatres offer relaxed performances for those with autism and other disabilities but these don’t happen very often so you need to keep an eye out for them. The NAS have a list of upcoming relaxed shows on their website.  The Proms now do a special needs prom each year for example. They may also send out a social story beforehand and on the day, there are staff more than happy to help with assistance. And of course, there is no one tutting at you if your child makes a noise or needs to come and go out of their seat.

We have also found that some theatres will offer access discounted tickets for those with disabilities and their carers. They don’t always advertise this so we always phone up and ask before booking any tickets.

Soft play centres and trampoline parks usually offer a discount and often a carer for free too. You do tend to need a carer able to stay and jump with your child as they can be quite busy places and injuries can happen due to other children being boisterous.

Last year, we finally took the plunge and took the boys to Disneyland Paris. It’s very expensive but, fortunately , we got free carer passes. We did need doctor’s letters as DLA, PIP and EHCPs aren’t sufficient evidence in France.  We got passes so that we didn’t have to queue for any rides and could almost get straight on. Warning. The queue to not queue was pretty horrendous. That makes it a stressful start before you even get in the park. Once you are in though, the staff are great and it is magical.

If you don’t want to spend money there are usually  free events over the summer.  I tend to search online to see what is on in our area. Lots of summer fetes . Art galleries and musuems are usually free and you can pop in and out of those. Some have children’s activities at weekends. I once challenged a carer to take the boys into central London and not spend anything. They managed to have a great day out as there so many free places to visit.

The boys at the Natural History Museum (free entrance)

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http://www.ceacard.co.uk

http://www.merlinannualpass.co.uk/information/disabled-passholders

http://www.autism.org.uk/about/family-life/holidays-trips/performances.

 

 

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Why BTECs suit some young people when GCSEs and A levels may not.

Our education system (in the UK) rarely accommodates the needs of children with autism well.  There are not enough specialist schools and not enough support within the mainstream system for children to succeed.

At primary age (4 – 11), parents may be able to choose whether to send their children to mainstream schools ideally with properly trained support in the form of LSAs (learning support assistants) or ABA (applied behaviour analysis) one to one tutors (which all my four boys had throughout the duration of mainstream primary school) or to special needs schools.

But what to choose at secondary level? We decided against mainstream. The academic system is mostly based around the acquisition of GCSEs. Our older boys would not be able to pass GCSEs, mainly because of their severe language disorder so what would they get out of mainstream secondary? Their needs would not be differentiated enough to provide them with any acknowledgement of the abilities they did possess which are not always about academic prowess.

Their very small special needs school offered foundation level Maths and English for those who would never attain a GCSE in those subjects. Starting at Level 1 and progressing to level 2 which is equivalent to a C grade at GCSE.  The questions are much more practical for our children. Why try to read Dickens when you have never read a book? Writing applications letters for jobs and interpreting articles about current affairs are so much more useful to boys like ours.

They also studied BTECs (Business and Technology Education Council) practical based, vocational qualifications. Again, so much more relevant to everyday life and teaching skills for possible future work.

I found it difficult to grasp what the levels meant at first. They range from 1 – 7. The most well known and taught are levels 2 and 3.

Level 2 BTECs are the basis of qualifications taken at age 16. The diploma is a full time course and equivalent to 4 GCSEs. The extended certificate is equivalent to 3 GCSEs. A certificate is 2 and an award is 1. So there is a good range of level within Level 2 to choose from and an equally good range of subjects to select from too.

Many are vocational based eg hairdressing or childcare. They equip a young person with the skills to find meaningful work. They are certainly not a qualification just for special needs young people but for anyone who is not very academically inclined. They are mostly course based so they are constantly assessed without the need for a final big exam at the end although there is usually a final major project to complete which can take many months. This eliminates exam stress and trying to remember a year or even two years’ worth of information in one go. It also provides a portfolio to showcase what has been achieved.

Level 3 is equivalent to A levels. Again, there are different levels to choose from, ranging from a course which is equivalent to 3 full A levels or to a single one.  The gradings are a pass which is equal to an E grade at A level, merit equal to a C grade and distinction which is equal to an A grade.

In 2015. 26% of students accepted onto a university course held at least one BTEC at level 3 according to UCAS.

To illustrate my point about BTECs.  Thomas has one GCSE in Art. But, he is now completing Level 2 in Art and Design this summer and heading towards Level 3 in September which will take two full years.

Benjamin is just finishing his first year of Level 3 Music Performance and Technology . By this time next year, he will have a qualification equivalent to 3 A levels yet has just one GCSE in Maths.

Hector is studying two different BTECS in sixth form. Art and Media. He is also studying A level photography so there is a mix and match approach depending on skills and ability.

There is still a written component to these courses which all my boys struggle with. The twins at college have one to one support from the Ambitious about Autism college which they jointly attend alongside mainstream college. They require help with research and essay writing but not with the practical elements. They accept they need that level of support but how great for their self esteem that they can do courses at a high level and manage all the practical skills unaided.

Because of the availability of BTECs, all our boys have a very real hope of maybe one day being able to work in the fields in which they excel. If they had been through a mainstream system with only GCSEs to choose from, they would have finished their education as ‘failers’ in many ways, having ‘failed’ to achieve any qualifications or attain any vocational skills.

We need more children to leave school with actual, real life skills which can lead to meaningful work.

The biggest bonus for all our boys is that they enjoy learning and are loving the courses they are doing. They try so hard in everything they do and really want to prove to themselves that they can succeed. They are engaged in courses which stretch them and make use of their innate abilities. Having autism with a language disorder should not exclude them from attainment and BTECs ensure this for them.

 

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How do you feel about your kids drinking alcohol?

 
My older boys are now 20, 20 and 17. While I don’t want to encourage them to become heavy drinkers, alcohol is part of most young people and indeed many adults’ social lives. They want to try it out.
 
They need to experiment with it, see what they like the taste of, see what their individual tolerance levels are. But in a safe environment.
 
The boys have been going to a local pub quiz on a Tuesday evening. It’s a week night and they have school and college the next day, so they only drink soft drinks or water. For one of the boys, sugar causes him to become hyper excitable and giggly and act in a very immature way. We have agreed with him that it’s best if he only has one sugary drink when he is out. Some alcoholic drinks have the same effect on him we have discovered. One prosecco for him is one prosecco too many! Sugar again perhaps? Yeast has the same effect on him so that rules out beer too.
 
I know we are supposed to ‘celebrate’ autism and not try to inhibit any of our young people’s behaviours but he desperately wants friends and wants to be accepted. Appearing very drunk after a fizzy drink or one prosecco is not seen as cool.
So we have been ‘practising’ to find which drinks don’t react so badly with him.  A glass of wine with dinner seems to be fine. Half a bottle with dinner, which he tried on holiday last year, had us all laughing as he couldn’t stop himself smiling and laughing. In other words, he is a ‘cheap date’. He and we now know this so he can keep a check on how much he drinks.
His twin is a runner and an athlete. While his tolerance for alchohol appears fine, he has never drunk enough to feel drunk. His body is his temple and he doesn’t want to pollute it with alcohol. On holiday, he does like a few drinks and will also join the other runners in having a beer after a race well run. I have no worries about him.
Our 17 yr old has a high tolerance level for alcohol. He and his mates all want to experiment with having a few drinks at a party or at the weekends. I am happy for them to do that in our house. Far safer that they are in our house than for them to feel the need to go out in the dark to find somewhere to illegally drink. My teenage years were spent drinking cider in the park with some very ill effects! I don’t want my vulnerable boys having to do that.
I am also relieved to know that none of them react badly to alcohol. They smile more, laugh and are silly. None of them get aggressive in any way.  That is a hugely reassuring fact to know.  It’s another reason for letting them practise while with us in a safe environment. We can witness any negative reactions.
Everyone parents their children differently. My way is not necessarily the best way or the only way but for our family, it works. I think that if something is witheld, it will become even more desired. We have a stash of chocolate. My boys can help themselves. None of them are overweight, they don’t crave chocolate because they don’t see it as forbidden fruit. I want them to feel the same way about alcohol. It doesn’t need to be abused. It’s there if they want it and we don’t make a big deal about it.

It probably helps that I only have a drink maybe once a week.  I drink water with dinner, so all the boys do too. I am known for my love of cocktails though, but as a treat , not as a regular activity. On holiday, we take the boys out for a pre dinner cocktail which they love. It’s as much about the ritual and being treated as adults and equals as it is about the alcohol itself.
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Will our boys ever have children of their own?

I took my three kittens to the vets on Thursday to be neutered. They are nearly six months old and were starting to get frisky! Hard to imagine my hand reared babies now ready to procreate already.  My one and only attempt at breeding kittens was more than enough but I did get to keep three kittens for my pain.  It led me to thoughts of fertility and of course made me think about my boys.

I don’t care anymore about the likelihood of never being a Grandma.

Fertility is a difficult concept for me to think about.  On two levels. I suffered from recurrent miscarriages and lost so many precious babies trying to have my own children. My boys were very much wanted. Having four was no ‘oops, mistake’ like some people thought and voiced hurtfully to me. My fourth son must have been unplanned as I already had three boys with severe autism? Why would I risk a fourth? And then there was the six year gap too.  In fact, he was so longed for that it took me six long years and five more miscarriages before he was born.

Fertility is precious. I know what it is like to really want a child but be unable to have one. Just taking the cats on Thursday to the vets made my heart bleed a little for the kittens that could have been.

On the other level, I think about my boys and the likelihood that they will never have children of their own.  I don’t mind at all about not being a Grandma. My youngest son was born to me miraculously at an age when many women are becoming Grandmothers, not mothers. My nest is full.

Do my boys mind though? Do they think about having children of their own? Benjamin has always wanted to get married and have children. Currently, he has yet to even find his first girlfriend.  Does he still want children? And if he does, how hard would that be? For him? For those children?

Thomas would be a fantastic father. He loves children and is so good with them but he cannot yet look after himself independently. I think he knows that having children of his own would be too difficult for him to cope with.

For my boys, perhaps choosing not to have children will be a hard decision. One that we will be there to support them through hopefully.

Another loss for them that they are aware of.

I think that is what I find so hard for my boys. Their awareness of life around them means they know that people have relationships, have children. There are some things we as parents cannot make happen for them and have to accept as part of their lives with severe autism.

I feel their potential loss though.

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‘I want to break free…’

An earworm to accompany you as you do your daily tasks!
 
I have been ‘at home’ for 20 years. I don’t want to say I gave up work 20 years ago or I haven’t worked for 20 years because I have worked so hard.  I haven’t earned any money though or barely any.
I am a housewife, a carer, a mother.  What does that mean? That I spend my days dusting? That I spend my days watching daytime TV? Meeting friends for coffee? 
None of those and certainly not the dusting. Life is too short to dust but I do have a lot of tidying up after four large boys. So many enormous pairs of trainers in the hall, not helped by the fact that Thomas, 20 is a runner and requires a different pair of trainers for each type of race or training session.  But now, I am wavering off topic which is how I seem to spend my days.
I start with good intentions. Six months of direct returns paperwork took me nearly as long to finally complete as I managed to find so many other things more needy of my attention.
I am bored. I am bored of endless forms. Endless benefit interviews for the boys. Having been deemed eligible for ESA last year, I then had repeat forms to fill in a few weeks ago and now more interviews next week. Why can’t they read the EHCPs? or the PIP assesments?  Now I sound like an episode of Line of Duty, how many acronyms can I fit into one paragraph?
I am bored of finding carers for my boys. I spent 16 years trying to recruit, train and retain ABA tutors.  It was one of the positives of no longer running ABA programmes that I didn’t have to continually search for tutors. Now, it’s carers I need. Not so desperate. If we don’t have any, it means we can’t go out or the boys can’t do so many activities but it’s not like when they needed tutors or they couldn’t go to school.
A recent advert produced some not very excellent applications. One from a 16 year old. Points for trying but how can I employ a 16 yr old to talk about dating girls and take my 20 yr old boys to the gym?
The boys are all in great educational placements. I am very relieved and very grateful that they all have an excellent school (the two youngest boys) and a great college placement (the two older boys) so I should be sitting back and patting myself on the back and reading a book in the garden.
After 20 years, I can’t do that. I can’t stop and smell the flowers. I am driven to keep busy.
I want to break free.
I don’t want to be just a mother, a carer. I want to be Sarah. The author. The champion of ABA. Someone who has an opinion.
Currently, I am thwarted. My new book has been with an agent for 18 months. The feedback from editors every time is that ‘it is well written’, ‘they can’t put it down’, ‘it’s a good book’. They want to publish it but the sales departments are wary of another memoir, another autism book and will it sell enough copies?

I will break free. I will be the author of that new book. Somehow. I owe it to my boys. I owe it to ABA. I owe it to myself for the past 20 years of fighting for my boys, of transforming their lives and I want to tell everyone about it.
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