Family experiences of living with autism
April is the time for Autism Awareness and like others, I've been (through the form of social media ) posting on the subject. I don't suppose I'm alone but I do recognise there's a lot going on in the world right now and that means that we are all preoccupied ! Whilst I feel passionate about the subject being a mother of 2 boys with autism, it doesn't mean that that everyone is, and that's ok! However, if like our family you are affected by autism and/or would like to know more, I'm extending an invitation to you to attend a play this week called "The A Typical Sibling" being performed by a young theatre company called Pound of Flesh. If you're in or around South London and fancy coming along to watch an example of gig theatre, they'd be thrilled to see you.
I must apologise for the fact that I haven't blogged in weeks. A family bereavement and a fair amount of infections have been doing the rounds but life goes on and whether we like it or not, we have to wake up, smell the coffee and despite upset and heartbreak, there's a need to go on and get myself together for the benefit of 2 very vulnerable young people who rely on me to get my act together. I'm back....with stories on how we deal with the challenges of autism. Hope you find it useful x
I know, we are sick of hearing about it aren't we? We've fallen victim to it, Max last Saturday and me, today. I'm feeling ok right now with the help of water and paracetamol but Max has had quite the week. The NHS are amazing, so uncomplaining and patient and taking care of so many people right now, its incredible to watch them in action. I had one or two though that showed themselves to be anxious, a little intolerant, and one that floated in and out like a butterfly. Nurses are like ourselves, human beings at the end of the day. I'M not criticising, just glad that these super heroes have frailties like us all xx
We lost my mum almost 2 weeks ago now. It's been rough few weeks but I'm thinking about ways in which I can keep her memory alive. I know she will be watching over the boys. Whilst its difficult for them to understand bereavement, I hope they will always sense that there is someone looking out for them and that we will take private moments where we can just simply be together in the way she would have wanted us to be, calm, still and at peace within ourselves x
You may have read the other flu jab blogs but finally we managed to get Max jabbed although I think the sedation may need re-evaluation as the after affects result in Max shouting rather loudly until the early hours of the morning! Read on, all will be revealed!
Thursday afternoon was a tough one, Josh came out of school in absolute floods of tears because staff had to make him put an iPad away and he found that a massive challenge. At home I tend to let autism be, I tend to allow him to do what he has to do in order to make him happy. His OCD is something that really can be insurmountable especially when we are approaching the end of school term because of tiredness and the need for a break and so I wondered whether that could have been behind the distress. Normal service has been resumed but read on if you can identify with this because of your young person, hopefully it will have the desired effect and let you know that someone, somewhere has similar experiences and that as parents/carers, we are not alone! Take care x
Paddy McGuinness and his wife Christine made a very lovely, brave documentary that was aired on the BBC 1 on December 1st. I watched it on Catchup last night and I was really moved by it and found it so relatable. If you are a parent of a youngster with autism, watch the program. If you're someone who doesn't know a lot about autism but would like to know more, watch the program! I'm just a parent of boys with autism myself but I could completely relate to Paddy and Christine's story and whilst there are days where I feel I'm locked up in a cage trying to battle this thing called autism on behalf of my boys, there's also reasons to be positive because it's a journey like no other and there are days where I wouldn't have my two boys be any other way because they are Max and Josh and autism is almost secondary to who they are at times. The more we talk, the more awareness is raised, and that can only be a good thing!
Finding sitters for a 17 and 21 year old seems so surreal but such is the reality of life with autism where the boys can't quite be left alone. We don't have any support and we don't have respite and to be honest, social care is struggling so much right now, it's not easy. For any parent struggling to find a sitter, think about asking at your child's school because you very often find that there will be younger members of staff who are only too willing to earn some extra money but it's a good thing if they are mobile and can drive because then you won't have to drive them home. There used to be an agency in the UK called special sitters but I don't know if they are still operating currently because of Covid. As a parent though, we need down time however short so someone who can help you is worth their weight in gold. Invest in yourself as a parent and couple because you need respite too!
It was fantastic to see that laws will soon be passed in Parliament to provide better support for the Downs Syndrome Community and not before time. It was really lovely to see everyone campaigning and I'm so pleased for everyone involved. I'm also hopeful that it will be a pathway for other disabilities. Why? Read today's blog on the frustrations of trying to get assistance with having a legal document signed to help us get deputyship so we can act on behalf of Max. Frustrating to say the least and a bit soul destroying to be honest. Still onwards and upwards.....
It's pretty vast and ranges from extremely high functioning to those severely affected by autism. My two boys are profoundly autistic. I think its great when someone discusses the diagnosis and its hopeful to parents of youngsters diagnosed because it offers hope and the more we talk about experiences with this condition, the more we open discussion and that's a good thing. Autism isn't a fashion accessory or trendy though, and I really hope that society accept it for what it is, and that in a lot of cases it can be debilitating but in other cases, people affected have the ability to understand how the condition affects them personally and can handle their autistic tendencies or characteristics so that it doesn't have a hugely negative impact on their lives. We are all individuals, important to remember that!
All our kids are quite unique aren't they? I have three, they're very different in their characters and not that similar in a lot of ways and I suspect is similar in your home. Nevertheless their achievements are so significant and relative to them and there's always a reason to smile as a parent when that goal however highbrow or small, is achieved. It's a good morning in our house today......hope it's going well in your home too! If not, take heart because tomorrow is another day! xx
We survived the jab so this is an account of what happened. A bit of preparation was needed and a little planning always help! Hope its helpful!
The steps and the planning required for the flu jab. Josh is a lot easier to placate than his brother but nevertheless, preparation is required.....I'll up date you after the event.....
Josh used to be really nervous of fireworks over the years but he has adjusted to them. I think that may be because we go to our local village display each year and he's become accustomed to the situation and setting. Max has always loved them and can be seen dancing around from foot to foot even on new years eve if he seems them on TV. For some it will be challenging but my top tip would be ear defenders and small displays in the gardens at first......small steps forward.......
You might remember from a previous blog that I mentioned that Josh had been approved for an AAC device to help him communicate. It's a tablet with words and symbols on and it enables him to form a sentence. The device also speaks and so this has created a window into Josh's mind for us because he seems to know what he wants even though he cannot speak and can't communicate verbally to us. The device is great and I would recommend anyone who might be in a similar situation to research it. Its certainly proving to be very positive right now for Josh and that's a great thing!
If you're a mum with a very faddy eater, you'll know that its quite difficult at times trying to break through the rigidity that can affect food intake in youngsters with autism. Food can be quite a sensory issue with flavours and tastes that are particularly strong, proving difficult when it comes to trying to get the youngster to try new foods. One of my boys had a very strong gag reflex when he was younger. With a lot of perseverance, he's doing much better so a word to any parent out there experiencing these challenges, please don't give up because it will improve over time. Max doesn't have a gag reflex but can be rigid in food choices. He didn't used to be but this has developed as he has become older. However, we've just discovered that he likes Marmite! Who knew??
Apologies for my silence, been recovering from an Op and it has been challenging to say the least. Autism doesn't relent though and there's still challenges to face even if you are a bit under the weather. And there's always shoutouts to count.....have a listen, all will be revealed!
Apologies for the delay, we haven't given up on blogging, just took a step back to deal with the challenges of daily life, just like all of you no doubt! We are still alive and kicking ...hope to be more proactive in the weeks ahead as we roll from one challenge to the next......take care x
....A CELEBRATION OF THE LITTLE THINGS ACHIEVED THROUGH PERSEVERANCE AND FIGHTING BACK AGAINST AUTISM. JUST A FEW LITTLE TRIUMPHS TO SHARE AND TO LET ANYONE WHO'S HAVING AN AUTISTIC KIND OF DAY AND WONDERING WHETHER THERE WILL BE LIGHT AT THE END OF THE TUNNEL? THE ANSWER IS AN EMPHATIC YES!
Mum guilt is a very real thing. Thinking I don't deserve to be out having a coffee when I should really be at home cleaning up, doing washing and housework is something that I grapple with but you know what? After the last year and a half and the experience the entire world has been through , its time to grab some moments whenever you can. There's a real issue with social care and support right now here in the UK so much so that there will need to be tax rises in order to sort this out. I genuinely hope it helps the situation. A note to any parents out there who feel guilt like me......cut yourself some slack! We do deserve a break too!
A big bear bug for me! Josh went to school, was taken on an outing, got soaked to the skin and we are now awaiting a PCR result. Anyone else sick of covid???!!! I'm not happy!
We survived the hospital visit but it had its moments. Thankyou NHS for being your brilliant self and for treating Max with lots of dignity. Sedation versus GA.....it worked well and sometimes its an option if you are concerned about having too many General Anaesthetics. In Max's case it was Midazolam and Ketamine......took a while for Max to wake up after that cocktail but He eventually did!
Hospital tomorrow for tests.....what a complete palaver.....onwards and upwards!
Tomorrow is tests in hospital day. It's not been easy to get to this point.....have a listen to the latest saga!
Visiting the dentist has always been traumatic in our house but I was blown away by Josh's visit this morning. Have a listen and never lose hope in the belief that desensitising your youngster really can help!
First day back and as usual mayhem! Read on, it speaks for itself!
One of the hardest things I find is how Max's obsession with water means that he tips flowers or indeed any receptacle with water. There are few simple pleasures in life, I love flowers and I love scented candles and diffusers. However, this boy refuses pointblank to pander to my love of these items, he blows on the candles, tips the diffusers and also tips any vases of flowers or indeed any receptacle of liquid. I'm not really a drinker but he has also been known to tip a glass of wine so that means that all of life's pleasures are cruelly taken away because he just can't stand to see these things around the place. This week it was about hiding a vase of beautiful pink lilies that I was given as a gift. I got away with it for a few days but it ended like it always does. Never mind, hoping for a bumper crop of bulbs that grow into flowers next Spring to compensate for the lack of flowers in our house!
That time of year again where a new chapter begins, there's a new coat, new shoes, some new school clothes and also there's the promise of an AAC device which will hopefully help Josh's communication! It's a time of emotion for me, I always cry when he takes those first steps away from the car and into the school building. As my mum used to say "your bladder's near your eyes", so it will be tissues at the ready! Here's to a new year, and a new start, Best of luck to you and yours if you are going back to school too x
Sunday was pretty fraught so apologies for my tardiness in getting this blog out, I'm afraid I needed to take stock and gather my thoughts....somewhat emotional today as I talk about the trials and tribulations of autism but its also tinged with frustration that people take things personally when quite frankly I'm just trying to keep my head above water! As with all bad things and in the words of Captain Tom, tomorrow will be a good day!
This one's about a study that is being embarked upon by University of Cambridge and other bodies such as UCLA into autism and other health conditions that can be present in someone with autism and how they affect their health and well being. Personally I think any research is a good thing and the fact that its headed up by Simon Baren-Cohen is really significant for me. This man is phenomenal in his work with autism and so I can't help feel that this is definitely work signing up for! Read on, you might find it of interest!
Max doesn't have great mobility since last year when he became quite ill and to be honest he's always been a little unsteady on his feet. He had achilles lengthening surgery a number of years back as he was a toe walker as a youngster and basically his achilles had to be lengthened and he was in plaster for weeks so its a case of having to observe him closely. The surgery worked really well and was performed by a Mr Theologis at the John Radcliffe Hospital in Oxford and Max now walks with his feet firmly on the ground but as this blog will tell you, he's not without mishaps......
The amount of paperwork generated due to having special needs boys can be alarming, there are days where I'm inundated by it. It seems to be never ending at times and very repetitive, I do wish there was a secure central depository for such information so that the powers that be could access that information without asking the same questions over and over again. That would be time saving wouldn't it?
My take on the recent story which headlined previously about a young autistic boy needing to be swabbed for covid by airport staff whilst trying to board a flight to come back to the UK. The family had a letter from their GP. Perhaps its time to consider that empathy costs nothing and doesn't affect an airline's profit margin!
.....which means a flexible sigmoidoscopy, is pending for Max and I explain why in the blog. Hospital visits are a challenge and need careful planning in our house. It will be a day that will require quite a lot of coffee......at least for me x
It wasn't without its tetchy moments but nevertheless we survived it. It can be challenging for the boys to deal with change but we eventually got to feel the joy! All of us!
Holidays take planning at the best of times but throw autism and covid into the mix and its fun and games! I always underestimate how much packing is required. There's no throwing a few items in a bag and off we go but planning will hopefully make all the difference! Here's to a relaxing break!
I find myself reading a lot of books on autism because I find its helpful to try and see what other tried and tested methods other parents try because lets face it, its great to just share ideas especially when you find things are challenging. This book is written by an author called Liz Becker and I love it. I'd really recommend it to any parent out there who might just want to know that they aren't alone and they may find that the experiences that Liz and her son Matt have had, really resonate. It's called Listening with the heart and the author is Liz Becker. Get a copy, I think you'll find it really good x
Today was a bad day. The journey with autism is one of highs and lows and today wasn't a great day. I've always promised to be honest with this blog and so I need to discuss the bad as well as the good days. Wherever you are, if your experiences are like ours, know that you're not alone. This too shall pass and tomorrow will be a good day.
Imaginative play is a tricky one for our youngsters as a lot of the time they can play in a very rigid manner. My boys were no different and so we explored every toy known to mankind to try and find that connection for them. We continued to try absolutely everything in an attempt to get them to try and play and develop skills. A lot of toys helped them with their dexterity and fine motor skills and so there were benefits. Have a listen and hopefully it might give you an insight and may prove useful
With the school summer holidays just beginning, thought it might be an opportune time to go back to 2019 when Max left school and the journey we went on to try and find that next setting. As I write this, I'm thinking about the fact that in 2 years from now, Josh will say goodbye to his school and he will be starting a new stage in his life. It will be an end of an era and 28 years of them collectively being at the same school! Best advice I can give any parent is to look at lots of settings and decide which would work best for your youngster. The more you look the more informed you will be!
I've got two boys with autism but even though they are brothers, they are quite different in their autism. Max is a bellower, he shouts in the style of Fr Jack from Fr Ted (for anyone who's familiar with the series about a 3 priests living on the west coast of Ireland) and he is unbelievably focused on getting what he wants. Josh is the quieter of the two and for someone who suffers with OCD and elements of ADHD, there's a serenity about him at times and that's always evident on the school run. This one's about Josh and the sound of silence......hope you like it!
This one's about the relaxation and therapy that animals can provide for youngsters with autism. Hear about the access to animals that have helped my son learn to relax whilst teaching him about caring for a living thing. Hope its relatable.
We're all aware as parents of the need for vigilance when it comes to youngsters using technology. It can be a difficult one to navigate at times. The boys' use of technology is simple, YouTube videos and listening to music and watching movies are really the sum total of what they like to use technology for. I'm defending it today because being dexterous with it means that the skills you pick up can be transferrable to other life skills and I've really only thought about that whilst observing my two sons who need a lot of support with dressing and managing fine motor skills. Hope this is relevant to you too.
Autism....warts and all, means I'm talking about a number of issues, some are pleasant and some are not so pleasant and I really delayed sending this one out because I didn't want to distress people but this is about being absolutely honest about raising boys with autism and so I really want to be straight with parents in terms of the challenging aspects as well as the bright moments! Hope this doesn't disgust you too much and hope that you come back soon! Promise to have cleaner content next time!
This one starts off on a slightly downbeat note but it takes me back to the time when Max was diagnosed and all the feelings that came with the diagnosis and the sadness that I felt surrounding it. If you've felt the same, know that you aren't alone, and if you are a parent of a newly diagnosed child, I hope this brings you some confidence that things will get better. It will be a journey like no other but it's a helluva ride!
This episode talks about family and love and the complete openness of other youngsters, one with another disability who has only ever loved and been affectionate with both my boys. I often think about how fantastic this is and how we as adults can learn so much from children when it comes to openness and acceptance and a lack of inhibition. The Irish amongst you will relate, after all that's what Irish Family Life is all about! Hope you can relate x
In the UK, every year a student in a special needs provision, has an annual review. It's a bit like parents evening but its more complex than that with a number of people present ranging from teachers to family support workers and the local education authority are also represented. It can be a day of mixed emotions, you welcome the feedback but at times you don't as you'll learn from my experiences. Hope this is relevant!
Max never reacts in the same way twice so whilst the first jab went smoothly, this one was slightly different, he didn't even react to sedation in the same way. That's my boy, complex beyond belief!
I wrote this in blog form some time ago so decided to podcast it , thankfully the only member of our household waiting on the 2nd jab is our daughter and I hope that will happen next month some time. It was a bit of a rigmarole getting there with Josh as you will hear but we finally got there. Difficult one making a decision for 2 adult boys who can't make that decision for themselves, but as a mum and carer, its my job to protect them and fundamentally that's why they have both had their vaccine.
I was listening to a radio show on the school run this morning and there appears to be a little reticence amongst some of the younger generation with regards to taking the jab. I got to thinking that maybe you'd like to hear about our exploits with the covid jab. Max was classed as housebound for his jab because he wreaks havoc everytime he goes into the doctors surgery. This was written as a blog sometime ago but I took it out again today for you to hear incase of interest! I'll update on his second jab experience shortly!
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