As I mentioned last week, as soon as my son got his diagnosis – the help seemed to pour in. For the following year it felt like he was prodded, poked and assessed by every specialist in Leicester. Frustratingly, the one area of expertise we knew he needed most was Speech Therapy which was the one we had to wait for the longest. Yes he could speak clearly, as can Joe – but his language was inappropriate and stilted needing specialist support.
Interestingly Alison has been able to access a Speech Therapist immediately privately. The whole episode seemed to focus on this very challenging relationship which I have decided is, or should have been completely irrelevant to Joes need for urgent speech therapy.
Alison is terrified of Joe being ‘labelled’ and his needs becoming ‘public knowledge’. She announces this to the therapist almost in her opening line with a ‘no negotiation’ deal.
I personally found the therapist quite cold with the family and a little aloof as she described how Joe’s self-preservation tactics played-out with his insistence on listening to his music with headphones so as to turn the outside world off. She said that the family had unresolved tension which seemed a little unkind to me. The small amount of one to one therapy she had with Joe was brilliant as she immediately got a response from him to the utter delight of his Mum.
Alison is still desperate for any help and support she can get her hands on to move Joe forward but sadly this comes across in bullish, demanding way. She wants to keep the therapist on as she has yet no comparisons yet and fails to acknowledge that other therapists will be just as good (and a little more friendly) than the current one.
What she needs more than anything is to meet with other parents and carers of children with autism and hear their stories as she is feeling so alone and helpless right now.
One of the most interesting relationships in the drama so far is Joe’s sister Rebecca. Her approach with Joe is confident without any tension or desperation as she continues to treat him the same way as she always had. Joe responds well to her and often smiles as if the two of them are sharing a private joke. This is in complete contrast to the relationship with his parents who are unconsciously putting pressure on Joe every time they interact with him.
Alison adores her son and wants to make his world safe but unfortunately in doing so is upsetting people along the way. Her obvious ambivalence and neglect towards her beautiful daughter is slightly typical and very painful as they drift further apart.
The parents love for each other is unconditional but their reactions to the catastrophic diagnosis couldn’t be more opposite which is driving a wedge between them. The realisation of their precious son’s condition is hitting them hard. Fundamentally they are both fighting the same corner for the son they love and care for so much.
Written by Sally Creedon on behalf of Integrated Treatment Services