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.
Interactions with Andy are often fascinating and can be lots of fun. It is important to relate to him on his own terms and in a way that is both acceptable and stimulating to him. Fail to do this and your chances of meaningful interaction are extremely limited as many a person could testify! Persist with this and Andy can become irritated. Very often what people refer to as ” challenging behaviour” is less an expression of aggression but rather one of frustration or annoyance. For us this type of reaction is a communication. It says something loud and clear- I don’t know or understand, I am not comfortable with how close you are or your directness, I really do not want to do this etc. Andy is not an aggressive child, even when severely annoyed.
On a more positive note a game that Andy enjoys with me is ” the big friendly lion.” As an approach it is influenced by Greenspan’s Floor Time I suppose and it incorporates lots that he enjoys – having fun, squeezes, tickles, funny voices and rolling about on his bed. I initiate this game by coming in to the room, adopting a deep voice ( you know like a lion?) and saying ” one day the big lion was walking through the jungle. He was looking for Andy.” If in the mood he will immediately roll up in his duvet and giggle. I look about, roar and go to the bed where I pound out the lion’s footsteps on his mattress while pretending to look for him and letting out the occasional roar. As I get closer his laughter and excitement increase till the lion pounces on him and gives him squeezes and tickles and kisses. I then inform him that “it is a big friendly lion that loves Andy very much.” This type of game helps Andy overcome difficulties with social interaction. It leads to verbalisations, eye contact, engagement and gestures to indicate more or to do it again. It is a very positive type of engagement and helps balance up the more negative daily interactions. When you take into account his developmental delay games like this are very age appropriate, loads of fun and very helpful for developing social engagement and communication. I also do a monkey, a dog , a cat and a duck, all very badly it has to be said, but the big friendly lion is our favourite!
Eh not really. Recently Andy’s night time restlessness has returned with a vengeance. He has had real trouble settling over the last few weeks and everyone in the house has been affected. Now Jen and I are well used to surviving on very little sleep but it has been particularly difficult on David who shares a room with his brother. Helen has been affected less but still significantly. She has been later getting to sleep and was extremely distressed one night to be woken by her irate brother who was having a tantrum as he had lost his current object of interest- a wooden spoon of all things. For David he has had to try and sleep through constant switching on and off of the light, Postman Pat dvd on a loop and random sounds from an IPad. All this is interspersed with shouts and prancing round the room by his younger brother. Now this was difficult through the holidays but is frankly not acceptable when David has school next morning. Sunday evening saw David agreeing reluctantly to sleep down stairs on a settee bed in our lounge. Like many autism siblings he has now accepted this compromise and it is starting to become another part of our routine. The first night I sat with David for a while before he went to sleep while Jen was upstairs with Andy. Although not mentioned I think we were both surprised at the quietness and peacefulness that presumably most of us experience prior to going to sleep. As always we have adapted and found a temporary way at least to help us get over this latest problem. For David of course it is not just the sleep situation but also the need for some private space for him and his belongings.This is a need that will increase in years to come and we are hoping to work towards a more permanent solution this year by making alterations to our home.
Andy has struggled recently with intermittent sluggishness and hyperactivity and like many of us will be happier in the brighter days of spring and summer I feel.
On a personal note I had a disappointment this week when I was unsuccessful in an application for a job as an autism advisor. It’s a position I felt I could have filled but I wish whoever was successful well. It’s undoubtedly a role that requires experience and honesty. Those living with autism deserve nothing less.
2014 was a good year for our family. Looking back it’s been tough at times but we have got there.
We’ve had successful toilet training.
A very good family break at Crieff.
Andy’s continued progress with respite, shared care and being looked after by my family.
We got through the trauma of Andy absconding and this ended with the positive legacy of a very supportive and helpful relationship with our local police.
We have had my oldest son’s Tourette’s diagnosis and although difficult this has been a real catalyst for supporting him appropriately. His school and teaching staff have been a great support to him also I have to say.
Our page and blog has continued to grow in popularity and regularly feedback from readers has reported an increase in understanding and empathy for those living with autism- something that has also been very evident in our local community too.
Many carers and parents have also taken comfort from knowing that they are not alone and that many of their emotions and difficult experiences are to be expected and do not make them bad people.
In all honesty these are the very issues I wanted to address through I.B.A. and the central aim is always to make the world a better place for Andy and others like him.
Without you our readers however none of this would be possible. We thank you sincerely for your ongoing support and wish you all a very Merry Christmas. X
Andy displays hyperactivity most days. Typically this behaviour includes flapping and stimming, jumping, toe walking, running, bouncing on beds and settees and lots of other repetitive behaviour like opening the fridge, putting lights on and off etc.We do our best to accommodate this behaviour by giving Andy opportunities for physical activities like walking, jumping and swimming and they certainly help. Dietary issues may also have an affect but given how difficult it is to get Andy to eat anything, this can be hard. In any day he tends to have hyperactive periods then some “down time” where he seeks peace and quiet usually wrapped up in a quilt or sometimes sitting in the bath with the tap running through his fingers and over his body. We have learned to understand some of the rhythms of his wee body and try hard to help and support him.
We understand these behaviours as at least partly arising from sensory processing and sensory seeking needs. Like all of us he requires to regulate for his own well being.
This can be a great challenge for everyday family life and harmony with siblings for example. Sometimes Andy goes through very extreme hyperactivity and we have been working through such a period this week. Unfortunately it has coincided with our other two children returning to school. For David in particular this is difficult given that he shares a room with Andy. Sunday evening , the night before school term began, Andy experienced severe hyperactivity. He went through his normal bedtime routine and had his melatonin, a hormone to induce sleep. He could not however settle and was up and down constantly. He was running round the room and up and down the stairs, bouncing on the beds, being incredibly noisy and switching the t.v. and lights on and off. This went on and on and when David went to bed he had very little chance of sleep. On Sunday this went on till after 1 am although David was overcome by sleep at midnight and slept through. This hyperactivity has continued although it is subsiding as we go through the week. On Tuesday evening it was really intense though he was settled by midnight. His hyperactivity included throwing himself against the wall wrapped in a duvet with such force that plaster came off the wall. He then came downstairs and did laps of the living room carrying a ladle and a ribbon. (I stopped counting at 250 laps) He did not appear unduly distressed during this behaviour, just focused and determined. Ironically as I write this I can hardly keep my eyes open even though last night was much better with Andy settled to sleep by 10 pm. The cumulative strain on us all can be very problematic.
Monday was a fine dry and sunny afternoon and when David and Helen returned from school I decided to take all of my children out to the park. Jen was making the tea and it would give her sometime to do this. So far so good? Well you might think so but this is how it played out. When we arrived at the park David and Helen got out, but Andy wouldn’t. We gave him a minute to think about it and process his thoughts – still no go. I suggested David and Helen go in to play for a while and I would drive round with Andy but Helen was not keen on this. She is only 6, I suppose. I tried to sit in the car with Andy and watch my other two but he became upset and pushed my hands towards the steering wheel indicating I must drive. I briefly ( very briefly) tried leaving Andy alone in the locked car , having some “down time,” but again this was a non-starter such was his anger. We all got back in the car. Helen was moaning at me because I said we could go to the park. David was giving Helen a hard time for not staying in the park with him. Andy was expressing his displeasure verbally about the interruption to his run I the car. Me? I was feeling like parent of the year. We drove across town with me trying to entertain David and Helen with jokes and funny voices while considering our next move. It was still a nice evening. We could still do something enjoyable as a family.
I drove up to a local beauty spot where Andy usually enjoys walking and exploring. David and Helen got out enthusiastically and wanted to walk around the loch, but once again Andy refused. We all got back in the car. I made a wide sweeping turn to allow Helen to see the swans and their cygnets. I wanted to spend quality time with my children enjoying and exploring. Educating them and talking to them about nature. More disappointment and guilt followed about another missed opportunity. You don’t get the time back you know. Mercifully I have little time to dwell on it as we engaged in the next issue. Andy has been stimming with a ribbon all day and had now put the rear window down and was trailing the ribbon in the wind. He was completely fixated and in his own world watching the ribbon flutter. Inevitably he lost his grip and off it went. More temper and frustration filled the car. I pulled in , checked it was safe and dispatched David to look for Andy’s treasured item. David brought it back to the car where it was snatched from him without thanks or acknowledgment. We tried one last play park on the way home with the same pattern emerging and so we returned home.
Siblings of children with disability put up with much disruption to their lives. In our case this includes sleep deprivation, lack of privacy and space, personal possessions being ruined, financial hardship, lack of opportunities for play and development, limitations to quality time with their parents, stigma of living with disability and daily disappointment as family life revolves around the need’s of their brother.
I’m sure it breaches their Human Rights while we at least still recognise such things in the UK . Surely siblings also deserve services and resources.
I remember the diagnosis day so well
Three severe faces with bad news to tell
The tears we shed for what might have been
Now, several years later into a life unforeseen
How are we doing? What can I say?
Like others we’re surviving, finding a way.
Now life is not easy, but is not short on joy
Thanks to my gorgeous and precious boy
There are challenges and difficulties every day
Resources to fight for, but we’re now up for that fray
To care for my son is now our main role in life
The trials and tests, the upset and strife
The laughter and happiness, the way we adapt
To this winding journey that will not be mapped
But each milestone he reaches in his own special way
Brings pride and happiness that words can’t portray.
True friends we have found who have shown they care
But many others not willing, our troubles to share.
We follow a path impossible to know,
Trying our hardest, and learning as we go.
Looking ahead we hope for a future that’s bright
For our precious wee boy who has every right
To live in a world without discrimination and pain
For this to happen would be society’s gain!