The story of the plane, the snow and a change of plans!

ben austria

Wishing you all a very happy New Year now we have returned from the very amazing Obertauern in Austria. This was the children’s first experience of air travel and it was a huge success. We registered for special assistance at Gatwick Airport and this meant we were sped through all of the checks, driven to our own departure lounge and assisted on to the plane. No queuing, plenty of smiles and despite being really tired, no dreaded meltdown.

Ben tried skiing in Austria and was confident and fearless! The altitude helped him sleep and the relaxed hospitality we were given by our hosts really helped the whole holiday go smoothly. We only had two meltdowns the entire break, and this was initially due to changing plans after the incredibly heavy snow fall. Ben cried in the wardrobe for about 20 minutes with me sat outside telling him that it would be ‘okay’ and he ‘was doing really great’. Another time was when his metal snow machine broke after some heavy usage. Again we sat together whilst he raged and cried and I reassured him once he was calm that we could work out what to do together. In both instances the style of parenting is not casting blame or shame when the behaviour becomes challenging for us. I have to remember always to say ‘it’s alright’ and provide a calm space for us to ‘time in’ together to process what went wrong and if we can fix it.

Whilst we were away my father became very unwell and had to have major surgery. Fortunately my sisters and mum were able to be there and I felt reassured that everything that needed to be done to help was being done.  I’ve been up and down to the hospital since returning, and I’m pleased to say he is making progress with recovery.

Back to reality..

Monday the first week back to school. Ben is still only doing mornings, but we had agreed together he might like to stay for the club in the gym each Monday lunch time for some social skills practice.  He refused his lunch and sat in the classroom until it was time for the club to begin. Ben attended the entire session and had a positive interaction with a friend who also has ASD.  It was a success we felt given that it was day one. Other days have been more tricky, with hiding in the school corridor in his coat and refusing to leave the house once we were home.

We are having to pursue mediation with Somerset County Council before they will consider appealing Ben’s case for an appropiate school place, but I am aware this is all just ‘hoop jumping’ until we reach the tribunal stage. The meditation team said this is the norm with Somerset and having to challenge them to provide funding standard practice. 20190103_203115.jpgWe continue to visit asd units in mainstreams (which are full) and the battle ahead feels enormous. I sometimes question if I have the stomach for it, wondering why I must struggle to get Ben a school place given his recorded and verified needs, evidenced by professionals at county already. I think they are stalling to save money and hope that I will give up and go away quietly. But I won’t be quiet or go away. I will be like a headache, that is just at the temple, reminding them of their legal duty to provide my son with an education whilst on a school role. Their paperwork doesn’t intimidate me, or their nonsense processes and jargon.  We will go a day at a time forward with our determination for Ben to be educated and to thrive. And they will listen.

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All we want for Christmas is…A school place for Ben

20181206_151453So we as a family have had quite a week. I have been in panto as the good fairy in our village performance  (watched by over 500!) And have enjoyed doing something special with a new group of people -just for kicks! My daughter was also in the show and we had lots of time together at rehearsals . We often don’t get a moment so this was really special. Ben had extra ‘Daddy time’ and they built dens, watched movies and played games. Finally they watched us actually perform on Wednesday. The party at our local pub on Saturday, following the final show, was brilliant!

It has been a hard week though for another reason. On Thursday I was told by our case worker that despite Ben being only able to attend school successfully for mornings, with often 2:1 support and with all the other needs evidenced, and more than 5 years worth of professionals assessment, the panel who consulted on his case at county – having never met him- only gave Ben a low level banding for funding.

Translated this means they will not support Ben attending a specialist unit within a mainstream, as we, and the professionals who support him, believe  would be in his best interests. Both his present school and the other mainstream schools County have consulted, have said again and again ‘we can not meet his needs in terms of education or keeping him safe’.

It’s quite a blow, but we will appeal and if need be fight this decision in court. Our county is strapped for cash due to central government cuts, and the default for all requests for funding is they are automatically declined. You then appeal, then appeal some more. Then you write to the LA direct and  complain. Then the MP (ha!). Then take it to court and fight for your child’s rights there.  This can take years. There are more children home schooled in Somerset at this time than ever before. This is in part due to inadequate school placements for children with SEND.

The big issue is financial austerity that is affecting the most vulnerable. Every child has the legal right to an education. Ben is 9 and I am not planning too far ahead, as he will likely be 11 before this is finally put to bed. By that point we fear he will have missed so many opportunities, and as a family the stress and worry is almost unbearable. We might have nearly stopped hoping. By the time Ben begins at secondary level schooling  (year 7), it is quite likely he will have moved to 5 different mainstream schools during his primary years so the county can make savings by denying him a specialist unit place.  For a child like Ben who wants to make friends and enjoys consistency and routine, the transitions alone take months each time and his confidence plummets.

We will take a pause from ‘battle’ over Christmas and enjoy being together and seeing the people who are special to us. I may squeeze in a tiny blog update  though before the big day!

 

 

 

 

 

Busted-causes of autism myths! Pow!

FB_IMG_1543949996611Let’s bust these myths! Pow! Pow! (Kung foo kick and karate chop!)

1. Lenient parenting/troubled families/attachment parenting styles/Co sleeping/being a hippy/not smacking/smacking etc…

…Does not cause your child or any child to develop autism or a neurological disability (attachment disorder aside).

2. Too much sugar.

Nope. Maybe you’ll regret giving your child that chocolate bar or packet of smarties at 8pm tonight, but no. It does not cause autism. It just makes them little monsters.

3. Too much screen time.

Erm. No. It is not caused by this. But it is quite a ‘topic’ actually. So we had virtually no screen time in our house until the kids were about 7 as they were just out playing. Even whole summers with no TV. And yet Ben is still autistic and still has raging ADHD. However he can cycle a bike like a demon. And let’s face it, screen time is pretty great when you do it in a way that works for your family, such as car journeys or when visiting someone with lots of precious antiques…

4. Tap water.

Heard this one yesterday. A lady told me she thought SEND was increasing due to ‘something mysterious’ in the water. ‘OKKKKAAAAYYYYY!!’ I just smiled and thought ‘I can’t argue with someone who has those views’ and held the door open for her. I hadn’t mentioned our own situation to her, but I am glad she said it to me and not someone who blames themselves everyday for their child’s high level of need.

5.Processed food.

See above. Think about how many people eat MacDonalds. Check your data. You might get heart disease though.

6. Immunisations.

No. And there are a lot of very clever scientific
geniuses that don’t work for the government, who also agree. I am not as smart as them but think they might know a thing or two. Still worried? Check online with the actual scientific community.

7. They will grow out of it.

Oh get out! It’s like saying a person who is paralysed will run a marathon next month. No, it is forever and ever and ever. This is because it’s actually a ‘physical thing’ in the brain connections and not a ‘developmental growth thing’. And yes, some aspects might improve over time if you get support, but the condition is constant. Not just ‘meh, it will be alright, you’ll see!’.

Support is many things- help to understand the condition and symptoms, support for school,  work, access to social opportunities,  but also sometimes a home made cottage pie and a hug. Someone saying ‘I see you need caring for too. I thought I would call in to see how you are today’. Or just sending smiley text is nice.

8. It’s everywhere!

I love this one. As it really is and possibly always has been. I believe we are more aware of hidden disabilities, that we talk freely about these conditions and both medics and educators are better equipped to identify the needs of these individuals much younger. Infact the world has never been so openly neurodiverse. With technology progressing faster than we can process, people with different thinking may lead the way in many industries. Think about Steve Jobs from Apple who was autistic? And then question- is it a disability to everyone? Perhaps it can also be super ability!

So what causes autism and other related or co existing conditions?

Well the answer is not simple and specialists in this field (not an actual Somerset field) are working on finding out more about it. What they do know is that it is often hereditary. This means that families who have autistic children, often have relatives with the condition who may or may not be diagnosed. It’s in the genes! Like having red hair or blue eyes. The symptoms though can vary from person to person and the genes can even be dormant in one person who is just a carrier.
There is also evidence that suggests some environmental factors may make symptoms more severe, such as birth trauma or events in pregnancy. This is obviously non exhaustive.

Some will also argue that it is just a different way of thinking. Like having an android instead of an iPhone . Just different software with apps.

Life is about variety and we all have qualities that make us who we are.
If having a disability/different ability is part of it, then eating MacDonalds, with your lenient hippy parents, whilst enjoying some screen time will not change that.

The art of friendship and kindness

Ben recently asked me if I could get him a friend for Christmas. A real friend. The sort of friend his sister has around to visit. Someone who enjoys sleepovers, bike rides, Lego, beach trips and XBox. He asked me for a friend in the same way he might ask for a Lego set or an ice cream.

So Ben can be a lot of fun. He has recently shown an interest in learning to fish, he enjoys camping, skating and trampoline parks. Ben loves to move!

However Ben can also be scary when he has a meltdown. Really frightening. He can loose control and become aggressive and unpredictable, or he runs away with a flight or fight response for most scenarios outside of his control.

And let me tell you, control is a big part of his idea of friendship. Ben likes to be in control of everything.  In charge of the games, what you like or don’t like. Your opinion needs to mirror his own. It’s not like he doesn’t want you there, he really does! He wants to feel safe enough to just ‘let go’ and allow you to be his friend with no rules attached. It’s just hard to get the relationship feeling safe enough for that. I don’t think he has ever reached that stage, even with the children who know him best. It is intense.

So friendship for the rest of us is also quite complicated and it changes too as we get older. Children’s friendships are often defined by having a sameness or shared interest. During teens friendships become about identity and being part of a group. It’s complex and for those of us with secure adult friendships, these are often based on a variety of aspects such as; environmental-people you see day to day such as at work, family, friends of friends, your neighbours, people from past aquaintances etc. But actual friendship with trust, boundaries, enjoying each other’s company, shared experiences and fun can be hard to maintain if you struggle with social cues and social understanding.

Eye contact is a real problem for some ASD folk but not for Ben. He looks you square in the eye for just a bit too long and it can be a game of ‘who will look away first’. He may stand too close or touch you on your person when you haven’t invited it, such as putting his hand on your face. He might demand all of your attention if you are in a group situation in order to have control of it as it feels ‘scary and unsafe’ otherwise.  He doesn’t always get the jokes unless they are literal and might think a joke has been played on him if everyone is laughing and he doesn’t get it.

He has very big feelings, mostly internalised and about himself, and has to be helped to understand the feelings of others. Ben can be kind and thoughtful if the situation is familiar and he has be shown how to manage himself. For instance with young children  he can be gentle and soothing for a short while, but it is not natural and I can see how hard he tries.

Yesterday I was ill in bed and he struggled to comprehend my need for rest and sleep. He insisted I get up, get dressed and do the normal things I do. He could not see that my need for rest prevented this. Empathetic behaviours can occur, but it is not the norm for Ben when routines are so important to him.

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He likes things the same and predictable and people are never this. We change all of the time, evolving and learning. Its how we grow. But for Ben this is confusing. If someone liked playing farms or trains two years ago, why not now? Why would someone change? When he is so constant it’s hard to understand others.

As parents all we can do is provide opportunities for Ben to meet children with similar interests and hobbies. To attend events in our community and chase up play dates, and have supervised structured visits with others.

So friendship is hard to maintain, and actually not a gift, no matter how much you believe in the magic of Christmas.

The compromise of being both worker and carer

Given our challenging circumstances I am often asked why I work. Firstly I work because I am able to (being able to work is the real gift here!) and I like having a job. On a lighter note I enjoy the knowledge I have earned my own income and when another box of gorgeous glitter shoes or a vintage dress arrives via post, I don’t feel guilty!

Another reason is when you are a caring for another person the ‘space’ you inhabit in your home can gradually diminish until your circumstances become your entire world. There is a danger of isolation,  depression and loss of personal identity.  I really don’t want to fall in to this as it scares me!

So working is difficult but possible with enough support. I have worked full time, part time, flexi hours and had total breaks from work due to our circumstances and then always looked forward to going back.

I also believe that as humans a fundamental part of our nature is service to others and being part of a tribe. I have been fortunate with being able to access educational opportunities and a lot of training over the years. My current work is also ideal due to term time hours, as Ben has struggled to keep his behaviours within the realms of a safe risk assessment for holiday clubs.

What about quality of work? Well this is huge. I feel perhaps paranoid that people think they need to make allowances for me or they feel sorry for us, or think I won’t be up to task. I work very hard to quieten these voices in my head. I arrive early, study to gain more qualifications, attend training and persist with my own ‘demons’ in this respect. It can be a private battle to believe you are good enough and no matter how many positive comments or bits of paper with your name on, can change it.

The carer gender divide…So myself and the hubby have had similar incomes, we share responsibility for our outgoings etc and overall are a modern family in terms of attempting an equal partnership. However when I take up a hobby or further study outside the home I have been reminded that ‘family come first’, ‘Don’t forget your children need you!’,’Perhaps you have taken on too much’ etc. Truth be told these things have also been said to me about working. I have been advised not to go for promotions and to limit my ambitions due to Ben’s high level of needs. No one though has ever, ever, ever, ever suggested Jamie reduce his business hours, not go out with friends on a weekend, not join a skittles league or buy a motor bike. Nope. Never. Instead he is told ‘you work hard, you deserve a break’, ‘Why not join another band? It’s great to get out!’,’You can’t wait to do these things!’,’don’t let things hold you back! Build your business!’ So no. There is not equality in this. If there is a phone call from school, a medical services or anything to do with Ben’s care they call me. It’s a real sub culture of inequality I hadn’t known about, or anticipated when we first had children.

One of the sad aspects of this is Jamie can feel left out and incommunicado with others. Whilst I feel responsible for everything and often overwhelmed. But I’m not invisible.

Caring for Ben is all day and all night. My phone is on when he is not with me and at home he struggles to sleep so we are often both up in the night. Something about Autism for Ben means he does not produce the natural Melatonin to make him sleepy. It’s unreal given how tired he is through the day! But we are a family team. We have shared dreams and hopes for the future and whatever happens we are thinking BIG!

 

 

 

 

Education- waiting and patience

So another day. I send a few emails to school, case worker and paediatrician. I email possible education settings with ASD units and also bespoke specialist schools.

All have different admission policies. All are generally very expensive, more so than fancy posh boarding schools, and must be requested through something called an ‘Education Health Care Plan’ which takes about 3 years to gather the evidence for, another 20 plus weeks to process- if you can understand the jargon, if not you will have to wait another 3 months to meet someone who speaks Klingon too- and about 2 months to amend, argue the details with someone who has never met your child and finally agree to disagree.

Yes the game of patience also includes others. Son not coping at the mainstream? ‘Well I know about this great school you must visit! He will settle there!’. ‘Well let me explain about the admissions policy’. ‘Oh, I see’ they say. Faces fall. ‘I had no idea. Well it’s not so bad eh? It’ll be alright’…(Rapidly walking away).

So the first mainstream approached obviously declined Ben. Knew they would. Case worker was surprised but since this will be Ben’s forth move at primary age I can only raise my eye brows.

‘I still think he could manage in the right mainstream…No Mrs Williams this is not about the money….I promise it is about your son. ..Okay. Yes I understand. Yes I am putting in for consultation with your first choice..Yes the specialist you initially requested. We just needed to hear back from my suggestion….I understand you have been waiting..No it is not true we are saving a thousand pounds a week delaying your son. These things take time…Well I am sorry about your job, really I am but the situation is slow moving. You just have to wait for a panel. Not this Wednesday, next Wednesday then call me on Friday…Well it might be declined. Then we will start again but panel does have Xmas off obviously. I am aware you want your son placed before Xmas. XMAS 2020! Oh sorry! I misheard…Oh I didn’t. That is how long you fear this might take. I just need to contact…Oh you have already done that? And they said no? No spaces? Well we will apply anyway- will only take another month. Yes yes. Well you see if places come up it’s about needs and not places and people move around. He would be on the list…No it’s not as bad as it sounds..Are you okay Mrs Williams? You sound upset. Well I understand, I did used to be a SENCo – I know he could go to the ‘right’ mainstream if only the ‘right’ people were working there. Yes Specialist workers in a mainstream provision- amazing!….You say that, but it does happen! Well let’s see… Okay I will expect your call.’

And the phone sits back in it’s cradle and it’s time to put the kettle on.

 

Wanted:Babysitter

Wanted: Babysitter. Must have interest in Lego and knowledge of Nerf Gun merchandise. Psychic ability to predict cause of meltdowns in order to intervene before actual event an advantage. Insomnia would be an advantage for stamina. Additional skills such as hand to hand combat, being an actual Ninja and possessing a calm relaxing voice like David Attenborough would be beneficial to all. Applications via YouTube video only and in the theme of Minecraft or a repetitive animation we can watch 25 consecutive times.’

We really need a regular break. We ask family but all have reasons they can’t commit or Ben refuses them. Kind older neighbours offer the odd hour visit for tea, so I can walk the dogs on the hill and find a calm space in my head for 15 minutes. but I am never long. These people are not responsible for Ben. The buck stops with me and my husband and we feel a burden for asking.

So further skill sets that could be useful ; qualified  at mediation or at least passed an online course. Psychologist. Or knows a good one. Territorial Army member or even better ex SAS. Can climb two flights of stairs in 10 seconds or less to get from kitchen to the office.  Can cycle fast and fearlessly in rural traffic and apply brakes to create a skidding stop in a cool fashion. Coffee drinker. If you’re not you will be. Knowledge of space, the universe and everything scientific.  Basically a physics professor. Able to think with a calm mind as 20 kg of Lego is poured across an entire bedroom to find simply one missing  part. Maybe you are a samurai warrior? Think you’re up to it? Perhaps we could suggest a trial?