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Month: November 2017

Never Forget

Never Forget

“If you ask me how many times you have crossed my mind, I’d say once because after that, you never left …”

Anonymous

It’s funny how some people just seem to make an impression on you. For whatever the reason, their memory is held and thoughts of them remain with you.

It might be an unexpected kind gesture, a kind act, and encouraging word, empathy or just their personality and character captures your imagination in some way. I’m not referring to that romantic impression – though that works in much the same way, but is not for this blog – but those few people with whom as a parent carer, or cared for individual, you feel immediately comfortable in their presence, or even in distance communication as with a pen friend (as we used to call them) or ‘friended’ and linked through social media in todays world.

I began thinking about this today and that this must also work the other way too – strangely, something I had not thought of before – but I happened to bump into a nurse we had met in a local hospital with our son. She recognised me first and came up asking “where is that lovely young man of yours” We hadn’t seen this lady for many years as she had long since retired and although we still attend the hospital, she is no longer there. We do often say to each other though ‘I wonder if MarieAnne is in’ and why, because she took time with our son and tried to engage with him and brought a smile to his face when we visited.  Our son still talks of her as well, even though it is years since we have seen her.

My day also took me into the local supermarket to get some shopping and though our son was not with me – not so well again – the check-out operator asks me “where is your son today?” and “wish him well from me”. I am touched that he has in some way touched not only these people, but several others as well, who also ask after him, or stop us when we are together and talk to him even though there is not much response. All these people are held somewhere in his mind and heart, and certain triggers will prompt him to talk of them even though they are not there.

The same is true of on-line friends who, through our joint attempts at photography have allowed a number of people to follow and understand our story and although we don’t know you in person, we have come to regard you as friends in the same way. Our son regularly asks if one person or another has written or commented and he too looks to see into your worlds as we talk about your own pictures together.

This post is really to say, “Thank you”. To all those who have never left our minds, thank you for being there. Regardless of our being chatty or quiet, being with you in person or on-line, thank you also for holding our son and ourselves in your minds and offering us such welcome support.

We couldn’t do it without 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.

 

Searching

Searching

Searching for answers

As they say, “The answer is out there”…. I’m not so sure all answer’s are out there, at least not yet, and frustratingly I have been searching for understanding, techniques and interventions to help our son.

Following a recent review we have been looking anew at how our son is being affected by his complex disabilities, in particular his Epilepsy and Autism. To assist our sons neurologist we track, types of seizures, duration, frequency, after effects, side effects etc. When it is charted, we can clearly see a deterioration in his condition and a significant increase in seizures. Coupled with this, is additional work done to track behaviour for his Psychiatrist. Moods, appetite, interest, interaction, and timing in relation to seizures etc.

I have learned that there is a relationship between seizures and anxiety, which can lead to a diagnosis of Epilepsy, when actually it is more linked (in our case) to Autism. ‘Non Epileptic Attach Disorder’ it is called and even has an acronym, ‘NEAD’. Trying to find help to understand how to distinguish between the two has been so far impossible, even though a very comprehensive document has been written.

My belief is that we should seek interventions by which we can ease our sons anxieties and through this, reduce the higher level of seizures which are not being managed through medication. My search has taken me to the USA and Australia and through my continually asking the questions and posing und our position, I have been helped, not with distinguishing the differences of basis of the seizure, but in trying to address some of the anxieties he has.

I have subscribed to a course of ‘Cognitive Behavioural Intervention’ (CBI). This is a modification of CBT aimed at those with Autistic Spectrum Disorder (ASD). Will it help? I don’t know yet, but I am hopeful, as I am a firm believer and one time user in business of CBT and NLP. I listened to a radio interview today with a leading neurologist who was saying that we just don’t know enough of Autism or Epilepsy and no great steps forward have been achieved, with very few people taking up neurology as a profession. This may explain why we have just been prescribed an array of medication and are no further forward in helping our son.

My challenge is to find a way to help our son understand what we will be working on together that will make sense and help focus and calm his fears. Maybe if we can do this, we will see a reduction in the number and frequency of his seizures, and then maybe, the medication can treat more successfully that which remains.

The answer is out there, maybe, just maybe, I may find it ourselves!

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 🙂