“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.