A time of reflection. Showing respect. An emotional for many remembering those loved and lost.
Grace took part in a local parade. The town was bustling with people young and old and with recent terror fears, police were out in droves to control the crowds and keep us safe.
Dylan came along, pacified with a quick cup of hot chocolate at a local cafe before we headed out into the chilly November air.
We stood, we waited and we paid our respects. Dylan needed physical reminders to remain silent for the 2 minutes but we did it!
The wonderful and amazing Catherine Newell advocates for her son and recently discussed growing up, sexual awareness and sensory seeking with regard to her son Axel who is the same age as Dylan.
Masturbation and sexual awareness has been a potential issue which I have been aware of but not really known with where to start. Catherine’s Facebook post https://www.facebook.com/plugins/post.php?href=https%3A%2F%2Fwww.facebook.com%2FCatherineNewellAndAutism%2Fposts%2F1192091697523942%3A0&width=500“>here is a great start for all ages. It’s never to early to start generating awareness and understanding about changing bodies and maintaining personal safety for those with different levels of understanding.
I’m a nurse; I don’t even blush anymore. I’m seriously impressed and a bit amazed at the level of detail required for this post- But it is so needed! So many of these factors I had not even thought about but am realising quickly that I need to.
“Forget the past, it’s gone, but glance back occasionally to remind yourself where you came from and where you are going.”
― Chloe Thurlow,
This week for Wednesdays date night Dad and I attended a talk from a young gentleman with Asperger’s. The church hall booked was crammed full of those waiting to see the young man speak.
We got there early, childcare had allowed us to get there in good time and we smoothly bypassed the tea and small talk to get ourselves settled in the large hall; we followed the typical arrangement of sitting on the end of a row to allow easy access out for if we get called to return home urgently.
The room slowly filled with lots of professional looking people with their lanyards and filo faxes. Larger groups of them chatted loudly and strode down to the front to get comfortably seated with the best views. There are always more professionals than parents at these meetings; I suppose it’s harder to make arrangements to get out of an evening when you have a special needs child. It just concerns me that some parents/carers would really benefit from such a talk but simply can’t get out to watch one. Some couples and single people arrives and shuffled to come and sit towards the back, quietly arranging their coats and checking their phones waiting for the talk to start.
The room fills and there are professional people we know historically.
Events like this always shake us.
Dad and I are a tight team and we support each other when the other falls down but in situations like this the painful memories of Dylan’s past always choke us simultaneously.
Two rows in front of us sits Dylan’s old play worker, a lovely lady but who was present when the paediatrician diagnosed him with Autism aged 3, one of the most emotional days of my life.
Two rows in front of the play therapist is Dylan’s nursery school teacher. This is a lady who I protested that her management technique of Dylan being separated from his peers by being taught in a cupboard as being improper. Sitting right next to her was Dylan’s previous SEN teacher who for the two years after preschool brushed off our concerns when Dylan would come home from school bruised or frightened, hiding his uniform to avoid going back.
Next to walk through the door is Josh and Grace’s previous head teacher. The lady who had no direct contact with Dylan but would make sympathetic faces and showed patronising concern after asking about him not being at school and the ‘how do you possibly cope not having a break?’ response to our reply that we teach him at home.
The only friendly face we saw was from a local support centre we used to attend. A friendly enough lady but when she came over to comment on how great she heard that the talk was as she had heard it was funny and ‘that’s what you need with these things isn’t it; a bit of humour?’ Sadly when surrounded by such painful memories I struggled to seek humour.
It was an interesting talk.
Dean is a charismatic talker. He uses humour well as a tool to maintain attention and to keep the audience focused. He is articulate and although I appreciate it is probably very hard work for him he generates a lot of interest and awareness with his work which I hope for him counterbalances his efforts.
Dean provided us as parents with an insight into autism for him, a verbal and articulate man who has overcome and continues to live with many struggles on a daily basis. His talk was interesting and from the perspective of him being both a child and an adult – something which we as parents have no insight into – an adult with autism. It seems so much time is invested in schools and education, it is a fear that the support and interest dry once our little people are, well, bigger.
Dean had lots of anecdotal stories interspersed with witty comments. Some of his themes I could recognise with Dylan in mind which was a comfort when faced with a young man doing so well for himself when the future can feel so uncertain for Dylan. Dean would crack jokes and the room would giggle and titter and then he would relate the humour to then realism for him, stories about his panic, his excruciating anxieties, and his exclusion at times. As the conversation changed to these more painful memories, there were still people laughing, I looked over to those who taught Dylan and saw them still laugh as this man was discussing how hard things had been for him. They weren’t listening, the humour had given them a licence to laugh, be it at their awkwardness of the talk or just because they found it funny but they weren’t listening enough to the true impact of Deans story, maybe they couldn’t hear the change in theme over their own guffaws.
There were beautiful encouraging points of the talk where Dean talked about everyone having potential and the importance of tapping into it, of finding common interests and the fundamental understanding that behaviour has a cause; behaviour is a communication. This really struck a chord with us. This is the ethos that we use for all our children but especially Dylan who requires more effort and support to achieve his potential. I feel reassured by Dean’s words; for us that gut-wrenching decision to leave school and go it alone was the right one and I believe has directly changed all of our lives for the better. It was a gamble, but it paid off!
I look over to see Dylan’s previous professionals all sat quietly listening to Dean nodding their heads in agreement. I could not help but feel anger of the injustice of those who had treated Dylan so badly in the past somehow identifying with this young man’s wise words about empowerment and opportunity. An ideology which had not been evident in their behaviours or attitudes but they could sit and self-righteously nod away, like they believe they promote it. Of course, my feelings are based on historic actions and I’m a firm believer that people can learn, people can change.
Even so, looking over at them all – it felt crushing.
A few days have lapsed since then. I still feel angry, I believe now that nothing will stop that simmering feeling of fury at times like this. Over time I expected this feeling to ease but the more that Dylan learns and grows and the more that he shows us his understanding, his empathy and his with the more angry I feel that we trusted the professional advice about what to expect and that he suffered for so many years with poor treatment.
So for Dad and I it was a night out which made us think and reflect, it pulled up old feelings and memories and resulted in a very late night of sitting up and ranting at each other about how bad things have been. We shared our individual and joint feelings of grief, loss, rage and injustice. We vented about failures of the systems, lack of acceptance and the poor misleading professional advice that we believed in the early years. We jointly remembered just how hard life used to be.
But this also reminded us of how good things are now, the progress made, the demonstrations of love within our tight-knit family to sacrifice for one another and to celebrate each other’s triumphs and successes. We are instilling the ability to pick ourselves up after disappointment and difficulty and proceed forward, against all advice, against the odds and without external support. We are reminded about how absolutely adored Dylan is now and how strong we as a family are together; and that can’t be a bad thing.
While at work I got sent these lovely pictures today. Dylan went out with Dad and practiced his independence skills.
ABA has worked really well for Dylans learning. For us to be able to break things down into little stages which can be learnt and strung together to make meaningful skills for him has revolutionised Dylans (and our!) lives. Errorless learning has given Dylan the boost in confidence to try at new experiences and to develop his interest in exploring concepts and ideas.
We are now at the stage where Dylan needs to join the unpredictable world where it isn’t all set up for his success and he needs to think on his feet.
We knew it was coming but it’s a nerve-racking time for us as parents. For his whole life we have tried to protect Dylan from the wickedness of the publics glare, from unforgiving customer service and the hustle and bustle of a world that doesn’t have the time to allow Dylan a minute to formulate his thoughts let alone his words.
Simply buying a hot drink could pose no end of possibilities;
- What if they don’t understand him?
- What if he drops his money?
- What if his card is declined?
- What if he asks for the wrong thing?
- What if his request is out of stock?
Too many ‘what ifs’….
So they both just got on and did it.
And I’m so incredibly proud of them both 🙂
On the first day of Christmas Lyndsey will be sitting with Lucca in his bedroom whilst he has a meltdown – screaming and hiding in his room because he has become so overwhelmed with the noise from his twin brothers excitement when opening their presents.
Whats the message?
Christmas ruined. Families suffering. Autism invading the peaceful holiday season checking around its meltdowns and causing disruption.
It’s as difficult for the brothers as Christmas is tailored around Lucca to try to prevent a meltdown. The family will have no tree, decorations or lights because of Lucca’s sensory sensitivities. The smell of Christmas is overwhelming for him.
What’s the message?
Those poor siblings, that poor mother. A terrible upsetting Christmas.The anxiety of unknown presents. Inability to cope.
“My feelings go on the back burner until Christmas is over then I have a good cry.”
Whats the message?
The message I get from all this is that autism is feared. Autism is unpredictable. It is a disruptive and uncomfortable force. Autism makes Christmas hard, for those diagnosed and thus in turn for everyone else around them.
The quotes above come from the National Autistic Society (NAS). The NAS is the UKs leading recognised charity to support those with autism. This is the ‘go to’ charity for advice and support for parents and professionals and this is what we are fed. Utter crap.
Let me tell you about our Christmas. Our family Christmas where autism is understood and integrated instead of being squished into an uncomfortable set of formalities and rituals.
Despite it only just being November, Christmas has already started creeping into our house. Dylan loves the noisy singing Christmas decorations that flap and sing and repeat. You know the ones; really loud! He has already selected his favourite for this year and plays it throughout the day. He loves the endless food and the constant stream of tea biscuits whilst snuggling under blankets on the sofa watching Christmas movies.
No he’s not keen on visiting or having people over; so we don’t.
He doesn’t like the look of some decorations; so we don’t have them all out.
In fact we see Christmas as a time for us all to be together comfortably and Dylan really enjoys that.
‘The Twelve days of Autistic Christmas’ NAS campaign is a slur on the beauty of our Christmas.
This campaign takes advantage of Christmas being a time where we ALL get a bit tired of relatives, of too much food, the decorations and excitement- that feeling we all get but somehow tries to make it into an AUTISM problem.
Come on NAS! Okay, I get that this is your fund raising ploy for the festive time but are you really peddling the pity card for donations? Shame on you. Bearing in mind your website motto is;
“Until Everyone Understands” may I suggest you review your fundraising methods? The stance on an autistic christmas is gloomy, promotes negative judgement and is not offering any understanding to those with autism that find situations difficult around the Christmas festivities.
Christmas should be an opportunity for families to come together, to understand one another and as a leading charity you should be making efforts to facilitate this. It is not an opportunity make money from the fear so many have that we somehow can’t manage our children or relatives with autism and so we have to face the prospect of doing so with dread or despair.
I feel for Lyndsey. I’m sure she didn’t wish for her Christmas story to make her son sound like such a burden but unfortunately this is how it has been portrayed by an organisation which frankly should know better. I genuinely hope that Lyndseys Christmas is better this year both for her and the whole family; But most of all for Lucca who sounded like he was having a terrible time. If only there was a supportive understanding national charity who could advise the family and support him instead of promoting his story as a negative piece of press to generate funds.
Anyone know of one?