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!