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Category: Autism

This post is intended to give a very brief overview of Autism from where you may like to find more information via the links or talk with you GP for advice

10th February

10th February

I don’t know why I still get surprised when changes happen to our sons wellbeing and health so suddenly. One moment we are laughing and smiling as we wheel-walk through the snowy lanes, and then almost within hours, the veil of depression and anxiety take a grip of him once more.

Over the coming days, reviews and assessments will take place again. We know his health is failing and that lasting damage is being caused as a result of his daily seizures. In turn, they are adding to his enormous anxiety and for us, it breaks our hearts to hear him say such things as “I’ve had enough of this” and “I can’t go on anymore” We understand that a person who suffers from Autism, can and does, sensationalise expressions as they talk and we are assured that what he is saying does not actually mean the desperate things we may believe they do and in truth, within minutes, his expressions and language can change, giving some support to these assurances.

Though I write these words, they are from a parents perspective of their only child, but we do recognise that we are just onlookers to the real torment that is being suffered by our son. We need to make sure we don’t feel sorry for ourselves, or him, but to continually keep focused and positive, also hopeful that something will be considered that will ease his burden. That does become hard at times. Soon however, we will get a view of what may be considered, though in reality, it will take several months to appraise the benefit or otherwise of whatever considered intervention is decided upon.

A taste of reality …

A taste of reality …

It hit us all quite hard. On Christmas morning, following a well planned build up to the day. Gifts that were not expected came to light and an extreme burst of anxiety rushed in. “What’s this” … “Where is it from” … “What will I do” … “do I open it” … “Can I leave it” … and many more fears, we can only imagine were terrorising his mind as our son come across them.

A person who has Autism can react in this way and we had learned a couple of years ago, to let our son see what his gifts are, help wrap them up and place them in his Christmas sack. That way, the sudden surprise of something different is avoided and he will be calm and in control as he works through what is expected. Completely forgetting all we had learned, we added a couple of last minute gifts that friends had sent him. Suddenly the bright and cheerful morning turned into one of terror. These two gifts had the effect of creating all his worse nightmares, instantly.

That was 21 days ago. This time, although we have been able to work through the fears and eventually get round to opening the gifts, lasting troubles still plague our son with increased uncontrolled seizures, virtually daily and migraines lasting two or three days. His mobility has worsened, his sleep is increasingly disturbed, he has developed severe shakes and his mood is very dark. “I’m sick of this” … “I’ll stop taking the tablets” … ” I wish it would go away” … “I’m fed up with this” … “It’s pointless” … many words he uses as he has heard elsewhere and his Autism brings out Echolalia which is repeating words that have been heard, ironically often in context, but he has no real understanding of them.

My wife and I have seen a step change and have our own fears knowing that uncontrolled seizures can lead to SUDEP and recently several cases have been reported on in the media, bringing home the similarities of the uncontrolled seizure. We know our sons condition is complex and we know and understand his life expectancy will be shorter. We seem to be facing a period where it is very challenging to enable him to become involved in all those experiences or observations we had hoped. For much of the last 21 days, we have sat calmly in our living room with him. He has not wanted to venture outdoors at all, he has not wanted myself or my wife to leave his side and we can see a genuine fear in his eyes if we need to.

His consultants have been made aware and we are monitoring every thing for them when we see them in a few weeks time.

We turn to God to look for his watching and caring love over our son, and for strength and answers. Sometimes we just as, why? We have never heard the words, “I love you Mum, and Dad” and I guess we never will, but those smiles we get from time to time are always heart felt. Of that we are certain.

Our hands, and faith, are with the medical profession now, soon we will know the next steps we will take and our support will of course adjust and change as our sons needs evolve. We may not ever get to see the sun set or rise on a shoreline, we may not get to fly a plane, but we will do all we can to make sure he remains safe, secure and loved …

 

A note of thanks

A note of thanks

A note of thanks

It is not often we get to post a picture like this, but throughout the year, my wife and I, as well as our son have been moved by the friendship and support of so many people. People who have become friends ‘on-line’ and from around the world as well as close at hand.

Growing up with complex disabilities our sons learning disabilities have prevented him from achieving the basics of reading and writing, amongst many other things we taken for granted. He will identify key words, not by reading the word, but by recognising the shape and structure of the writing and will attempt to write a few words, such as his name. As a result, we will read to him any written comment or letter and try to use words and metaphors that help him picture what is said.

Suffering, amongst other conditions, from Hydrocephalus, it has been discovered that people with this condition can see lines paper or written words on a page as spirals causing great issues even focusing on a page.

Our son wanted to express his thanks to all those of you who have contributed to his world over the last year, and beyond and we have worked on preparing this note with him, that he has signed to add that personal touch.

Post ….. and Pre!

Post ….. and Pre!

It is incredible how Christmas passes so quickly once it arrives. Maybe too quickly. And as we consider what turned into a very intense day, we are still picking up pieces and holding them together.

Our son needs clear preparation and exposure to all things that will change, so that he gradually becomes accustomed to the changes over a period of time. We thought we had learned so much from the last year or two on how to ease him into such a big event that Christmas is. This proved not to be the case.

As you enjoy the joys of Christmas and preparations for New Year, as well you should. I ask that if you have a member of your family, or even a neighbour or friend that you know struggles in a similar way to our son, please see if they need a little support, or even calm, reassuring company amid all the partying. They may just welcome your contact without having to worry about all the glitz that comes with this season.

We planned, ahead. Looked at decorations before we bought them. Put up a tree without the lights so as to be seen as just another potted plant, we diarised skype calls to greet our distant friends and family, we spoke about what gifts Santa would bring. As our son can no longer manage to get to church, we watched the services on TV, listened to the carols, said our prayers and as the evening grew old, we watched Santa travelling the world on the Norad ‘Track Santa’ web-site. Before we retired for the night, we checked the offerings left for Santa and Rudolph and went to bed.

The following day, Christmas Day, was destined to be too much of a challenge from the outset. A gift too many and unexpected in his Santa sack caused immediate concern, anxiety and mood swing, a planned Skype call had to be postponed …. expectations of what was going to happen, was smashed beyond repair and now four days later, we are just beginning to recover the situation, plan, we hope, for a New Year with as much … ‘business (or life) as usual’ as we can muster.

I know we are not the only family who experience these things and I want to share our experiences in the hope that something in what I say resonates with you and if you know someone who may appear low, they too may have suffered from some sensory overload in much the same way and are desperate for your support. Probably to do nothing, but to be there and reassure them that the world hasn’t begun spinning the opposite way and to encourage them to focus on the ‘usual’ things in their routine.

We will learn again from what happened and next year, hopefully, we will make it special for him.

 

Merry Christmas and a Happy New Year. I wish it a peaceful, healthy and enjoyable 2018 for you.

 

Tips for caregivers of those with autism

Tips for caregivers of those with autism

As a member of ‘Autism Support Network’ I came across this article, written by Tulika Prasad, and felt I should share it. It did resonate with our own situation and in truth brought a tear to my eye as I read, as it was comforting to see that others do experience what we do. You can read her final paragraph in the link, but for my blog, I rewrote it slightly, to reflect our own position. I would also remind readers that although it appears many articles are written for and about ‘Mums’ of special needs children, ‘Dads’ are also experiencing the very same emotions and frustrations and should not be forgotten. Read yourself into any reference where Mum or Dad is written.

Tips for caregivers of those with autism

Think about the day when you got to hold your little bundle of joy … you promised to protect him forever … to love him and be by his side till the end of the world and beyond … you wished for his eternal happiness … and then he was diagnosed with Autism and something changed. As your child adds age but not milestones, you are soon given a new designation – that of a caregiver.

Your child might be 6, 16 or 26 and he might still need the care and attention of a 6 month old.

As your child grows, he gets stronger while you begin to age and find yourself struggling at things that you found easy to tackle just a few years back. Your stamina falls while your stress level rises. You’ve probably missed out on your social life. You probably look ten-years older than you are because you’re not just physically but also emotionally invested in this process. When the caregiver is also the parent, as is the case with most families with a child on the autism spectrum, the stress is manifold since there is always that looming fear of what the future holds for their child after they are gone. There is that desperation to fix the situation rather than wait it out.

Though it’s easy for people to assume that caregivers are a different species altogether, they are not. They lose patience, they get tired, they feel helpless, and more often than not they are very lonely. It’s a perfect recipe for depression. It’s no surprise then that every other day we read stories of caregivers hurting themselves or the cared-for being hurt. Who is to be blamed here? The person, the society … or the circumstances ? Whatever answer you choose, the bottom line is that it’s about time we had a conversation around the caregivers.

While the world decides on what it can do to make life easier for those who spend their life caring for their loved ones, here are a few tips that might help some of us stay afloat.

1. Get some sleep/rest – Sleep deprivation can play tricks with your brain. It’s important to catch up on your sleep whenever and wherever you can. If you’re missing out on sleep at night, drop everything and take some rest when your child is at school. If that is not an option, try sleeping in your car while your child is at a therapist; let the therapist know you need that nap. They’ll understand. Whatever your schedule, be creative and find a way to get that rest. It will do wonders for you.

2. Respite – Where I live, we get limited free respite services from our county. Find out about a similar service from your county, and use it. Respite providers are trained to take care of special needs.Take that time off to shop, get a massage, go to a cafe, meet friends, go to a movie or a date night or simply sit back home and binge on your favorite serials. Don’t feel guilty about having that time for yourself. Just remember to not use this time for completing chores. Use it for yourself. You deserve it.

3. Invest in your health – Before you know it, all that stress is going to take a toll on your health. And though you may not really care about yourself so much given the enormity of challenges you face everyday, if you want to be around for long to take care of your child and also be of use, you need to be healthy. This is an investment you will not regret. This one is for your child as much as it is for you. Get your full physical done, eat healthy, eat well. Exercise. If you cannot go to a gym, which might be the case for a lot of us, try yoga, pilates and many more exercise that you can do at home. Whenever you can, go for a walk, it will help clear your mind and rejuvenate.

4. Find a place to vent – You will need it. If you’re a social media person, find a group where you can safely vent without being judged. If you prefer a more face-to-face interaction, try a support group, or just that one friend you know will not judge. But find a way to let the steam out. It’s cathartic and it’s important.

5. Cry if you feel like – I try to stay away from a lot of depressing thoughts but they tend to creep up every now and then and fog my mind. Those days I feel helpless, lonely and unappreciated. I fear the future, I resent the present and I feel like running away from everything. This is the time those tears come in handy. A good heartful crying really helps in these situations. It’s not a sign of weakness. It’s a sign of being human. Cry if you must.

6. Laugh out loud – Don’t miss an opportunity to laugh. Even in the most depressing of circumstances life gives you reason to smile. Grab that opportunity and turn it into a laughter. The sound of a hearty laughter can dispel the thickest of clouds and bring in some much needed sunshine. Watch a funny show, share a joke, laugh at a fond memory or just look around and you’ll find a reason.

7. Celebrate more often – You might not always find the success that fits the usual definition but there will be many small victories that will come your way. Learn to celebrate those rather than dwell on the failures. Your child might have just said “mommy,” or have given you a hug for the very first time. He might have tried a new food you did not expect him to or learnt to finally tie his shoelaces or went an entire day without an accident. Go on, give yourself and him a pat on the back for it. It’s your hard work. Celebrate! Caregivers face a lot of challenges and need a lot of persistence. So, when there is a moment to shine, shine up bright and loud.

8. Let go sometime – As a caregiver, it almost gets ingrained in us to be on a constant watch … to be on our toes and to be right there all the time. However, contrary to what you may expect, giving your child some space, letting them be and allowing them to try being independent even if they fail is not always a bad idea. Let them have mismatched socks once in awhile, or eat with their fingers, or not respond to their name or have that extra bit of sugar or watch a little more of the same, or lineup cars , yet again, . Give yourself a break. Let them figure it out once in awhile. Sit back and watch the act sometimes instead of being in the act.

9. Ignore others – You are on your feet the whole day and that one moment you erred and your child ran away from your side in a grocery store, there will be ten people judging how careless a parent you are. People will judge. No matter what you do or say, they will find an opportunity to do so. 100% acceptance and understanding is a Utopian concept. As long as you know in your heart that you are right and doing the best, forget what others say or think or it’s going to get really expensive for you mental and physical health. Get a thick skin and a clear heart.

As an autism [dad], and of course my wife as an autism mum, we’ve seen more days that are exhausting than days that are laid back. we’re always in a state of hypervigilance and mostly for good reason. We’ve very limited friends and we need a lot of planning for even a slight change in routine. Almost everything we do is a chore because we are in that constant fear of a meltdown, or a seizure, or incontinence. In those few minutes that we may take my eyes off of him we’ve could find him contorted with epileptic convulsions or handling something dangerous that will do him more harm. He can never be left unsupervised. I help him change, bathe, clean, eat, toilet, and practically help him with everything he does. He is not a 6 month old. He is almost 31 years old. With him around there is not a dull moment and a ‘walk’ to the couch seems like a very long journey. We probably [hopefully] have many more years ahead of us that we’ll be doing what we do for him now. Maybe not. When we eventually held him for the first time, we promised to be by his side, always and so we will … and to do that we need to take care of ourselves just as much as I take care of him.

 

Gift

Gift

Making preparations

“The best gift comes from the heart and not the store”

Anonymous

Those of you who have followed our story over the months may recall that we have found, when supporting someone who has Autism, complicated with other disabilities such as our son, change can create terrible anxieties. At this time of year, when Christmas adverts are promoted across TV and radio, and a trip down the high street reveals seasonal window displays, festive lighting, bands and other street artists, and crowds of people, all bringing their own cheer to us, spare a thought for those who find such things just a little too much for their senses and can develop serious anxieties and fears very quickly.

As someone who just loves the magic of this time of year, I have a need to see and experience as much of these things as I can and my wife and I just love it when our son can smile at what we all share together. To achieve this, we need to plan ahead, we have found that the secret is nothing more than a gradual introduction to the season, the events and the biblical meaning behind Christmas.

You may be surprised to hear that we visit garden centres a lot!  They always put on super displays of decorations and lights. Publicity is sent to let us know the date and time of the  “Christmas Opening” with music and wine and other fabulous enticements. For us, we visit weeks earlier, to see the gradual removal of pots and plants to make way for the glittering displays to come. To see the gradual transition allows are son to come to terms with the changes, we can talk about it, we can ‘peek’ behind the security curtains to see what is going on and we find he can accept the ultimate result far easier because it’s not sudden.

Likewise, a trip down the high street early enough to see the changes happening helps the transition to Christmas displays and acceptance without the fear.

I often get asked, “what do you mean, fear?” and “How can a changed display create fear?” etc and after nearly 31 years of understanding the effects these things have on our son, I suggest to them, that they imagine waking up in the morning and as they open the front door to go to work, or school or whatever they usually do, and instead of what they usually see, the driveway, the car, the street, is not there …. in their place is a vast ocean, no land in sight and to further image if they turn around to go back indoors and when they turn, their house has vanished and that ocean is there too … endless water, and nothing else. I ask “would you be disorientated and a little fearful as to what has happened?” invariably, they answer yes. This is something like how I have come to understand what our son feels when there is a change to his surroundings and environment. Of course, he doesn’t see the ocean, but flashing lights, decorations, displays which are all a different sight to him have that very same effect, creating disorientation and anxiety.

We take the same approach when we look for a gift for him. Surprises don’t work, in that, as they were unexpected, a sudden panic and anxiety attack takes hold and the enjoyment is not experienced. Worse, the gift is from that moment on associated with something stressful and never really appreciated. So we go out to the stores together, and I have to be very attentive to what he looks at, or talks about, as that will indicate a level of interest. Over several weeks we will return and talk about it some more and how we would use it, where we would keep in in our home and eventually we will make the purchase together. We wrap it up together and put it somewhere safe together and the surprise moves not from what will be unwrapped but more to a countdown of the days until it can be opened again. If you think that a countdown is not exciting, please think again!

In truth, it’s not so much what we buy, but the way we go about it, spending such quality time together, looking, talking, laughing and planning, and avoiding the build up of anxiety that is the real treat here. Our son now talks about what we did last Christmas in a positive way, and that too was all about a gradual supportive approach and he recalls those positive moments with joy. He’s looking forward to the trips to the garden centres, the Nativity displays, the Church services, the wrapping of gifts, the making of Christmas dinners, even the annual Queens speech.

We have done the same for our Christmas decorations at home. In putting them up, we work towards the first day of Advent, but not a date to put up our decorations, but a date by which time we have completed them. Our decorations, and one of our  trees are being put in place, gradually throughout November so that again, any sudden change is avoided. This year, we are taking advantage of the new decking which is a visual point he can see from indoors as well, and a new pot grown tree has been introduced, that he has accepted and will become familiar with year round with anticipation and of solar lights being put on in a couple of weeks. After Christmas, this will be relocated in the garden and tended through the year and re-potted until we bring it back to the deck again next year.

Gifts are lovely to receive, but for some, its the reassuring company, the approach and the support that is the magic of Christmas. We are blessed with a number of friends, some we see, some are on-line, but equally valued and loved and who join us to make each day special for our son.

Thank you all 🙂

Reviewing …

Reviewing …

Raindrops on roses

“Some people walk in the rain, others just get wet”

Roger Miller

I’d like to think that I maintain a positive outlook and it’s true that our son will pick up on the slightest emotion that my wife and I show, consciously or subconsciously. His emotional wellbeing is so dependant upon us, regardless of what he is doing at the time. If we smile, he knows things are calm and safe, if we frown and hold a stern expression, he questions, “is everything alright” ? and we have to quickly and confidently recognise this and change, to exhibit a happy smiley face and demeanour.

He attended a review in the last couple of days. A clinical psychiatrist and speech and language therapist kept him (and it really was a feeling of being ‘kept’) for over an hour and a half, questioning this and questioning that. For me, I thought many of the questions were asked without any regard for his learning disabilities, which just served to increase his anxiety at being there. Looking ever more frequently at me as if asking for help, without uttering a word, I did eventually bring a halt to it as I could see a meltdown happening and he had been there way too long.

True enough, the wild and uncontrollable temper, coupled with severe upset followed and it was all that I could do to get him home and go through our ‘safe’ routines while keeping a smile and calm voice throughout.

The specialists need to know what progress has been made in a relatively short space of time, but for our son, it seemed like it went on forever!

We have been told that he hasn’t developed at all since we were there last and that many fears and anxieties had been amplified. A backward step. Medication changes had been responsible for some input to this as well as a lack of adult care support for those over a certain age with Autism and additional complex needs. In short, if we don’t, nobody will.

We have come out armed with more techniques, ‘Talking Mat’, ‘Room Diary’, ‘Audible and Visual event slideshow’, ‘Short trips’, ‘Happy pictures’ so on and so on …

I’ll not knock any of them as they all have their place, and many we have used successfully but I do get to regret that his autism was not identified at a very young age, but rather struggle through the last 30 plus years and now trying to re-educate his mind to develop coping mechanisms that will last and not forgotten at the slightest change.

It is through times like this, you need to have a mind-set that you ‘walk in the rain’ and not ‘get wet’ as the successes and achievements, no matter how small and brief are well worth the continual effort that is needed to achieve them and though you may feel alone against the world with the ongoing challenges, your not really, and to quote a line from a movie  … ‘help will always come to those who ask for it’ …

That help invariably comes from your friends 🙂

 

 

 

Not impressed

Not impressed

Always a greeting

For a few days, I have to take part in civil duties. That means I will be away each day. Our son continues to be cared for and watched over by my wife and his Aunt, but I’ll not pretend the absence of myself or my wife for such long periods of time is not easy for him to come to terms with. He lets us know in many ways how much he is ‘not impressed’

We will get through it and he will get through it, and keeping him active is even more important during this time.

He’s not alone in being affected by this as we realise that Lady Bronte has grown accustomed to our routines now as well. Almost anticipating what we will do when and being ready to join in. Always with an ear on the door or the car engine when one of us is out, desperate for that little sign or sound that we are returning.

We don’t leave her alone or caged, even for a short time, and she comes with us everywhere. When we did recently all have to go out, we took advantage of a lovely ‘pet-sitter’ who lives nearby and who took her walking and swimming for the time we were away. socialising with other dogs too, she had a ball.

In the next two to three weeks we are hoping she will be joined by a new feline sister. A 14 year old cat that we are adopting into the family. We have always had cats around the house and Lady Bronte was fabulous with our last cat, who has sadly passed away now and we don’t want to leave it too long before she is reintroduced to one. Before Lady Bronte, we had a golden Labrador (Jasper) who also had a very good relationship both with our son and with the cats we had then.

Our son also learns so much by having animals around. It helps greatly with his understanding relationships as he does bond with the cats and dogs far more easily than people. One of the autistic symptoms relates to his inability to strike relationships and is not too comfortable in other peoples company. With our cats and dogs, he is so much more at ease, and holds many conversations with them, seemingly as if he gets an answer back.

It is important as well, as he sees the need to care for them, exercising them, feeding them, ensuring they have fresh water throughout the day, sensing when they are unwell or want to play. We go shopping at the supermarket and our son takes responsibility for reminding me to buy food and choosing something for them.

During this period I’m away for much of the day, Lady Bronte will play an important role – unbeknown to her – in ensuring our son remains focused on these things until I get home.

Animals are well documented as a form of assistance for many illnesses, disabilities and age and the relationship that is struck up, particularly with those with autism, can been very rewarding. Dogs and Horses in particular seem to have an ability to calm the anxieties of those with autism.

Autism

Autism

Autism (NHS Choices)

Autism spectrum disorder (ASD) is a condition that affects social interaction, communication, interests and behaviour. It includes Asperger syndrome and childhood autism.

The signs of ASD typically start to develop in childhood.

It’s estimated about 1 in every 100 people in the UK has ASD. More boys are diagnosed with it than girls.

There’s no “cure” for ASD, but a range of educational and behavioural support programmes can help people with the condition.

Read about help and support available for people with ASD.

Signs and symptoms

People with ASD tend to have problems with social interaction and communication.

They can find it hard to understand other people’s emotions and feelings, and have difficulty starting conversations or taking part in them properly. Language development may be delayed.

People with ASD are often only interested in certain things, have repetitive behaviours, and like to stick to a set routine. They tend to get upset if these routines are disrupted.

Children and young people with ASD frequently experience a range of cognitive (thinking), learning, emotional and behavioural problems. For example, they may also have attention deficit hyperactivity disorder (ADHD), anxiety, or depression.

About half of those with ASD have some degree of learning difficulty. However, many people are able to be independent with appropriate support.

Read more about the symptoms of ASD.