Jen and I have just returned from a short break with David and Helen. This trip however marked several milestones.
It was the first time we had went over seas leaving our precious boy at home in Scotland. We spent 4 nights in Germany at my best friend’s home. It was a challenge for all of us and had been a long time in coming. As a family we have arrived at this point through a slow and careful process of Andy becoming more and more comfortable at respite and of us being able to overcome our anxieties and build trust in our Carers. Dealing with our emotions, our guilt, sadness and anxieties and recognising our responsibility to give Helen and David new and exciting experiences takes time and effort. They finally got to fly in an aeroplane and go to Europe. Andy was happy and relaxed at respite. Our Carers stepped up to the challenge too, and kept Andy safe and happy.
Jen and I are immensely grateful to everyone who helped make this happen.
On my way back to work today after a period at home and I’m in a reflective mood.
During my time off I have been involved in several DLA applications and appeals for children with autism. Returning to the ” normal” world of work immediately removes me from the constant duties of supervision and Care that are the daily responsibility of Carers.
It is hard to accept why the DWP are so reluctant to acknowledge or believe the extreme nature of autism and the tireless support Carers and parents provide.
Andy has been constant in his needs for support as well as wondrous in his beautiful autistic way of being. I am physically absolutely shattered but also as motivated as ever to respect and support his way of being in this world. We had some lovely moments over the last few days together. At a local leisure centre that we frequent Andy simply wanted to sit on a child’s horse ride and observe the world around him. I sat with him and watched him take in and process the sensory stimuli and activity around him. With understanding he copes in a world that is difficult and highly challenging to him. Awareness and acceptance are crucial to his wellbeing.
I will never stop fighting for this.
An end to austerity that punishes the poor.
A new fit for purpose ferry for Dunoon.
World peace and respect for all peoples, faiths and cultures.
That more people experience the joy of sharing their life with a dog.
Frank’s Law to be adopted by the Scottish Government.
A recognition of the problems in mainstream school for disabled children.
More (some?) honesty, listening and integrity from our politicians, councillors and heads of service.
A wide spread social model approach to disability.
Greenock Morton to win the Scottish Cup.
Lots of new local councillors in Argyll.
Night 4 of Andy being unsettled. It’s got steadily worse and tonight he is currently bouncing off the walls. Notions of Christmas holidays relaxing at home seem to have evaporated before they have even begun and all of a sudden a couple of weeks is looking like a long, long time when yesterday I thought I was looking forward to it!
Here are my tips for unpaid Carers at Christmas and other holiday periods.
NEVER get seduced by thoughts of holidays and relaxing because that experience generally doesn’t exist for you. Keep your head down and your expectations set at your normal level. Avoid mainstream images of celebrations and festivities.
Do not let your guard or indeed your hair down. Stay work ready and alert at all times. Look after yourself and never make plans. Never complain it only makes you look bad and feel even worse.
Never, ever underestimate the lack of awareness or desire to even try and understand your life by the majority of those around you- particularly those who make a living from disabilities. Always be polite and remember your manners when seeking basic supports and remember despite the massive savings you make to the public purse , despite the fact you are a massive net contributor, other more able and responsible people will decide your worthiness for help.
Remember also that these very folk will avoid direct contact with people with disability at all costs and would struggle to last ‘ a shift’ doing what they demand of you everyday.
This post is dedicated to out of touch social workers, professionals, policy makers and politicians – you know who you are! Do try to open your eyes and seek some exposure to the lives of those you claim to act for.
Now before I am accused of being all bah humbug and putting a damper on your festive let me quickly say that is not my intention.
I generally love our family life with autism but as always simply want to raise awareness of how autistic people and families can experience Christmas.
The loss of routine and the sensory bombardment of the many distinctive and unique elements of the festive can prove problematic for autistic people. Lights, decorations, loud music, crowds, social events, fancy food, unfamiliar faces, changes to television listings, homes overloaded with new and strange presents, waiting for taxis, loud fireworks, awkward questions from seldom seen relatives , new social demands -this list of potential problems is not exhaustive. For some autistic people however the whole heady mix can leave them on a knife edge of fight or flight leading to missing out on events and disruption and unhappiness for families.
So what can we do to provide a more autism friendly Christmas experience?
Well in general we try to celebrate but also keep things as normal as possible.
If you have guests by all means look after them but this does not mean it is impossible to provide familiar foods at the usual times for an autistic person.
We also try to always have an alternative from any problematic stimuli or situations.
In a relatives home that could be a bedroom or quiet space being available to seek calming refuge in. Runs in the car also help but obviously require the driver to avoid wine with a meal. We try not to stop Andy being exposed to things he might like ( and he has often surprised us) but always on his own terms and with a safe option to avoid anything troubling.
The unpredictability of autism can make planning and organisation difficult. A degree of flexibility around times for meals or visiting is helpful and an understanding that if an autism family has to cancel at short notice this is not as ignorant as it may initially seem.
Andy’s reactions to receiving gifts used to embarrass us but now we explain that it often takes him time to assimilate an new object and the expected social response is just not in his makeup. It does not mean he is unappreciative of the kindness offered to him.
Most people want to enjoy the happiness and fun of Christmas and autistic people are no different in that respect.
With a little thought, preparation, flexibility and understanding this is entirely possible and can make the season of goodwill extend across neurodiversity.
Sometimes I just need my blog to let me vent. This isn’t a post that will be widely responded to or that seeks to raise awareness ( beyond the plight of an autism family at least). No it’s just some stuff I need to off load. That ok? Thanks.
There has been a few low points since I last wrote here. The kind of moments when you realise that lots of folk simply don’t give a fuck about autism and disabilities. It can be very hard not to see it as a snub, a disrespect, an ignorance of my son’s life and of our lives as Carers. I see a lack of the ability to care from folk who really should. We all should but the ones that are paid to care really, really should. Even if it’s just a charade, they should still go through the motions. I insist.
This week has witnessed the rejection of 6 months of work and effort that I have put in to try and contribute to making the world a better place for children with autism.
A combination of apathy, red tape and well just nastiness based on ignorance and insecurity has sunk my attempts to try and have a voice and a little influence at a local level. In a system whose rhetoric extols the desire to and greatness of embracing partnership working with autistic people and their families the truth is the opposite sadly. It appears that a parents perspective has no place in our local schools sadly.
The local screening of an acclaimed and powerful film about autism shown as part of a film festival in our town and some discussion thereafter attracted only a handful of folk . I understand entirely that those living with autism often can’t get away, Jen covered to let me attend and contribute but it would have been nice to see some of the councillors or our MSP , perhaps some of those highly paid professionals who dictate policy come along and support it. Even if they were simply going through the motions.
The poor treatment of autistic people in an often failing or completely failed system continues and without awareness and acceptance it won’t get better.
The onset of winter is hard and the short dark days affect me more than I care to admit sometimes but the hardest thing of all is the lack of respect or worth shown towards my precious boy.
p.s. Thanks to Ken Clark for picture. http://www.kenclarkphotography.co.uk/
As I write today we are nearing the end of a short break in Perthshire. Andy is at respite and has been on my mind on and off. The normal guilt around going away has been dulled somewhat by sheer tiredness and Jen and I have been spelling each other to allow plenty of additional naps.
I had just awoke after another short afternoon snooze and as I made a cuppa I felt a little disoriented. I am a little ashamed to say I was experiencing mixed feelings about coming to the end of our break. Tomorrow life would return to normal and normal has been hard of recent much as I miss my precious boy.
As the lodge was quiet I took my cup of tea through to the television – a novelty to be honest. Today’s day time offering featured Aled Jones hosting a show about a family who had four beautiful girls, one of whom had quite severe disabilities. The other girls and mum were clearly very devoted to their family and specifically their sisters needs. The young woman with the disability had the most beautiful smile and was so clearly happy and secure despite the challenges she faced. As I sipped my tea I realised that the program was actually about a philanthropist who wanted to help the family. Mum explained that her daughter had really benefited from having a loan of a day chair that could be moved and allowed her to relax with her sisters in front on their television or to participate in social occasions. The cost of this essential piece of furniture? Less than £2000 and happily the good soul purchased it for the family. It never helped my conflicted emotions about living with disability though. It felt bittersweet. The family and young woman in particular were clearly delighted but why were these inspiring people having to rely on charity for such an essential piece of equipment? How much would the type of care being provided cost a health authority ? Why was there no state provision for equipment that allowed this young woman a basic human right to ordinary family life?
These feelings drive me to want to keep challenging. As carers we accept life is different in many ways. The desire to ensure the powers that be keep their end of the bargain will always be a struggle. These thoughts I realise have strengthened my resolve and I can’t wait to see my precious boy tomorrow.
Andy was 9 last Friday and although normally birthdays are times of celebration for families of children with a disability it can be a bitter sweet time. It can bring home the impact of developmental delay and often leads to making comparisons with other children. It is very difficult to buy presents for a child with no conventional interest in material things. Jen and I are getting better in this regard however and do our best to see things in context.
This year was possibly the best birthday yet thanks to Jen’s careful planning and the kindness of so many family and local people. As a parent you just want to give your child extra happiness and love on their birthday and we are no different in that respect. For the first time we invited some of Andy’s friends to our wee gathering and it went really well. Andy was so pleased to see his friends as well as family and Jen was a relieved mum having put so much into it. The fear of no one making an appearance is a very real concern for autism families. Deficits in social skills can make it so very difficult for children with autism to make friends.
On Andy’s birthday itself I had the day off work and got to spend the day with Andy Jenny and my mum also. I prefer to keep things simple and familiar for Andy on special days as it increases the chances of avoiding difficulties. We had a lovely day playing with Andy in the garden on his swing and gently exploring his gifts at his own pace. In the afternoon we visited Benmore Gardens cafe for juice and coffees and cakes. Andy did really well and when the manager discovered it was our special boy’s birthday she presented him with a gift! It really was a lovely touch and makes us all feel accepted in one of Andy’s favourite places. We drove home in good spirits and on arrival discovered Sergeant John Forrest of Dunoon Police at our front door. As soon as Andy saw him he became very animated, waving his hands in excitement. Sergeant John had come by to wish his number one fan Happy Birthday. Andy got out the car and greeted Sergeant John by smiling and tapping at his radio and vest and Police hat. Sergeant John presented Andy with a card from all the Police Officers at the station. Then he asked Andy if he would like to see the Police car. I have rarely saw my precious boy so excited as he climbed straight in to have a look around the Police car. When Andy eventually let Sergeant John get back to his duties we were all feeling great. Andy rounded off his day enjoying some water play with the hose in the back garden . Later as we reflected on the events of the day I realised that not only had the kind folk of our town made Andy’s day a memorable one, they had also left his parents feeling a lot better about a birthday with autism.
We are looking forward to next year already!
Sent from my iPad
Every time I see Andy struggle or when people don’t listen or respond to his needs I hear this question coming from his mouth.
How hard will you fight for me dad?
With every ounce of my being son,
I’ll question everything that is not right.
I’ll challenge the cuts and campaign for you.
On your behalf I will seek support and services.
Friends and family I will ask to help,
On authorities I will make demands.
To get supports and improve your life
And make it the best I possibly can.
I will strive to understand your needs,
To become well informed and able.
Attempt to raise others’ awareness,
And make your world a better place.
Get to know how the systems work,
And how to get your voice heard.
I will give up other things for you,
And try not to moan too much about it.
When you are failed I will raise the issue,
Challenge and complain on your behalf.
Those awkward moments I will meet for you,
And take the consequences they bring.
I will care for you, look after you, appreciate you,
Especially when things get tough.
And when my body gets too old I’ll use my wits
To make the best case for you I can,
And to secure the best life for you my son,
Because you deserve that precious boy.
Not excuses, half measures and lies.
I promise to give you everything and more.
And when my light is fading I’ll plan
To make provision and ensure you have someone there
Making sure you are content and safe and happy.
That is how hard I’ll fight son,
I hope it is enough to give you the life you deserve.
Andy is not keen on any type of invasive interaction unless it is on his own terms. Over the years this has presented problems for us as his parents providing basic care. As a per-verbal child Andy has never been able to tell us if he feels unwell or is in pain. Add to this the fact that until fairly recently Andy would not take any medicines and you can glimpse another big problem for parents of children with autism. Similarly we have struggled to keep Andy’s hair neat and tidy. To say that he does not like having his hair cut or shampooed is something of an understatement! We have tried various approaches all with little success. We tried a sympathetic barber who had to give up after literally chasing Andy around the shop! We tried a hairdresser who came to our home but again Andy would not cooperate. Now we try to do it ourselves if the circumstances are favourable and Andy is engrossed in something but it is a very difficult thing to do.
We have attempted various methods of cutting Andy’s finger and toe nails also. As he has got bigger and stronger this has become almost impossible to do without his cooperation. He does tolerate filing his nails but they still require to be cut regularly (especially as Andy likes to explore outside and inevitably gets dirt under his nails.) Jen, like many autism mums, displays versatility and the ability to think outside of the box when looking for solutions for problems around Andy’s care. She now cuts Andy’s nails while he is asleep with the use of my head-torch! (I should have guessed when it disappeared from my rucksack!)
When you consider Andy’s often unkempt hair and discomfort wearing conventional clothes and shoes in addition to his stimming , it is understandable that people are going to stare. In many ways this is a natural reaction when we see things that we do not understand or that fail to fit in with our “norms.” For me as a parent, the crucial part is what happens next. Unhelpful and unsupportive gestures-nasty or mocking comments, disapproving looks- make my heart sink and my hackles rise! A kindly smile, an honest enquiry or a passive response are all fine as far as I am concerned. I am nearly always happy to explain a little about my precious son’s behaviours and condition in an attempt to make his (and others like him) life a bit better.