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Just kidding- not about the above fact, but obviously that cannot be the end.
As a full time carer for three children with autism, life can be full on, and days can go by where for one reason or another we cannot leave the house. As parents we absolutely love our children and would not wish them to be different in any way to themselves, but that doesn't mean that it is easy by any means.
At a point of exhaustion last year I sought support from a local group of parents - I had every hope of it not being one of those clicky groups, but sadly my worst fears were proven true at the first signs of having my own mind. I asked for support from the head of social services for disabilities.
Six months later we had a social worker assigned to us (after I chased up this manager again) but her support has been underwhelming. We have had a child in need meeting, where I sat with a few professionals, none of which had actually met all of my children anyway, and listened to them passing the buck- literally in some cases, before arranging another trip out of their offices, sorry, I mean another child in need meeting for a few months time.
I was asked during the assessment prior to this meeting, what my support needs were. I told them as openly as I dared, that having no family and few friends (we are still fairly new to the area and with not being able to go out it is hard to make friends anyway), life is exhausting with no break. I told them that everything is a battle- and I emphasised EVERYTHING with examples such as going to the toilet by myself, cleaning, eating, anyone's personal care, leaving the house, getting dressed.....normal everyday things everyone has to do are so difficult and constant battles here. Everyday.
There were lots of agreeing noises, nods and writing down on a form, followed by a trip upstairs to 'see the children's bedrooms' (I still don't understand why they need to do that every time they come out....we know when the social worker is coming, wouldn't let her in if we didn't anyway, so if the children's bedrooms were not OK (whatever that would be) then they wouldn't see that anyway!). Next I heard was that the only support social services can offer us is, at best, a weekly activity for each child through their short breaks provider. Please someone tell me I am not going crackers here....I have explained that we cannot get out of the house, so their answer is to literally set us up to fail by saying they can offer our children activities out of the house??
Yesterday was the first activity of this new year. It was not arranged through social services as I have not heard back from them yet, but the children get one session a month at the moment- each. I was looking forward to last night as it was the first time we had booked all three children in to the same activity, so it meant my husband and I would actually have two hours together. Alone.
Of course this did not happen. Our two eldest went to the planned session and thoroughly enjoyed themselves, whilst our youngest sat in the van with us, screaming, shouting, kicking, punching and eventually wore herself out and fell asleep.
We do everything we can, all the time, to alleviate any anxiety the children have. We discuss everything, make decisions together, reduce all demands whenever possible, use the Ross Greene explosive child approach to parenting and still when meltdowns happen (usually when we need to go somewhere) none of this helps. Even being able to see the signs and trying to divert/distract/discuss/reassure before it escalates to this extreme is no good in these situations with our children with PDA. Last night came out of nowhere. She was perfectly happy all day, she knew what was coming up all day/evening so it was no surprise to her, but still BANG, meltdown and a half.
This is not the first time our children have been absent from these sessions with no notice, and I am sure that this is noted somewhere being as they are linked to social services, yet the social worker still thinks extra sessions will help us? I have no desire to have these battles, potentially three times a week between the three children, having to either expend so much energy and time convincing them to attend an activity in the first place, for them to change their mind at the last minute, or to cause so much anxiety and stress that they have a meltdown and suffer emotionally as a result. Yet, now I have asked for support, I am very aware that if I turn around to them and explain- again- that I don't think these sessions are going to have a positive effect on any of us in the family, then I will be seen as not engaging with the support and being reluctant to accept support.
Excuse the cynicism here, but it is based on facts and past experiences from both sides of the desk.
Also, I will happily spend all day and night and all my energy supporting, cajoling, encouraging and discussing actvities and opportunities with my children, and do not mind if they change their minds (many times) at any point, even if we have paid for activities, but to have to do this for activities they have not chosen themselves and have no real desire to partake in is my issue.
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