Today I returned 2son after his weekend leave. I had just managed to get him up half an hour before we were due to leave.
Yesterday he got up shortly past midday, realised he wasn’t going to get to play on the computer, and just went back to bed for another six hours. I can’t tell you how exasperating I found that.
So, what was said at the meeting? His keyworker spoke of his good progress on the ward, that he was continuing to interact increasingly in group therapies, that he spent a good amount of time with the other patients in the common areas and was doing well. She sits down with him before each home visit and draws up a simple schedule of activities whilst at home. Maybe two activities a day such as gardening, cooking, cinema, going out somewhere.
He comes home with it and tells me he will pay no attention to it whatsoever. He then proceeds to get up when he decides to, ignores any plan, and barely communicates with us. A bit like having a teenager at home really.
The CAMHS therapist attended and informed us that the two doctors who had initially performed the ASD assessment had got together with the psychiatrist who had performed the second positive assessment and they had all jointly agreed that yes, 2son had ASD. That was nice. I said that my meeting with the psychiatrist had done nothing to change my mind and that I was still totally unconvinced. We agreed to leave it there.
The social worker said that 2son was not above the threshold for educational support and that there were two possibilities. She could refer him to the Early Intervention team who had lots of measures (unspecified) that could be put into place. I sat there thinking it was a bit late for Early Intervention. Or, the preferred option which would be to pass us on to the Family Support Team, so we would get a Family Support Worker who would come and assess our needs. Super I thought, another assessment.
What would Family Support provide? Oh well, they have a range of things they can put in place, and they could help you with techniques for getting 2son out of bed. Brilliant. Because it’s all my fault he doesn’t get out of bed because I don’t ask him in the appropriate manner. I didn’t hit the roof, just pointed out that 2son was perfectly capable of getting up when he wanted to and the choice lay within him; it isn’t down to me. However we agreed to go along with this as something positive to explore.
She also said that 2son had been statemented. First time I’ve heard of it, I replied, the assessment/decision is due to take place in October. So something odd is going on there, or I don’t understand the process which is equally possible.
I think therapist had prepared them, as when I announced that I was having a holiday next week and wouldn’t be taking 2son on leave there wasn’t a murmur. Good, I thought, 6 days without children. Out of 365. Every single one is needed.
Social worker finally asked whether 2son was going to be discharged immediately then. So we argued for a bit and decided to wait and see how 2son did at going to school from home after the holidays and until family support was in place. Therefore possibly the September meeting will be a discharge meeting and possibly it won’t. We’ll see.
I walked away steaming, as I had done after the previous one. I hear well the suggestion that since 2son behaves on the ward but not at home that the fault lies with home and therefore me. The social worker is the only one who says it out loud but I feel so judged.
2son may like routine but prior to all this I saw no evidence of it. Maybe he behaves on the ward for totally different reasons that we haven’t yet fathomed. The reason I’m not convinced of the ASD diagnosis is that he showed none of these traits prior to the last three years; no typical behaviour prior to stopping school. Autism is supposed to be from birth, not something that appears overnight in response to events so where does that leave me? I must ask CAMHS therapist if I can have a meeting with someone from their side to talk through this.
Oh yes, and due to a “communications error” the family therapy that was supposed to be put in place after the last meeting at the ward so that 2son could attend as well hasn’t.
I really don’t know how to cope with all this. I keep thinking of my BFF1 who spends more time looking after her mother than the professionals who are paid to do so and I dig in my heels. I say no, he’s not ready. I disagree and ask awkward questions. I can’t really think what use Family Support are going to be, unless they’re going to offer to come and cook dinner every night (or even twice a week). I struggle to maintain whatever shreds of sanity I have left.
I have doubled my dosage of anti-depressants once and am thinking about doing it again. I’m thinking I could do with a proper psychiatrist with whom I can stick with, rather than the service I have been getting. Although undoubtedly valuable and cheap, changing therapists every year and starting off with unqualified ones who take a while to get going just isn’t enough. Not with the pressure that I’m under. I’ve made a note to discuss this with my GP next time.
I want more help for ME and maybe I shouldn’t have been so derisory at the suggestion of Family Support. Maybe they have enough funding to help. Who knows. But I looked around the group of professionals this afternoon and thought not one of you is really concerned with how I’m coping. This all leaves no room for me.
What have I committed to; what is there that I have said I want this and am willing to spend years getting there?
