Today I have succeeded in getting a new social worker for my children. It has taken an official complaint following the correct council procedure (from which I heard nothing), an email direct to the head of child social care (which forced a response to my official complaint) and finally a direct email to the boss of the social worker we were first allocated and who managed to rid all three children of autism and all their other medical needs.
I spent the morning preparing for a social worker of the same standard as him. I read up on the children’s act, child and family act, law for disabled and chronically ill people and even went through the council’s own threshold of needs and policies ready to have to defend our complaints.
The lady arrived ready to listen, made notes on our points and asked relevant questions.
She seemed genuinely shocked that the social worker hadn’t approached other professionals in our children’s lives for their thoughts and experiences of working with them, was disappointed that the report hadn’t been discussed with us at all and even informed us that the social worker should have asked about the children’s educational psychologists and spoken with them too. It amazes me that someone who misses out all of those steps is allowed to work as a social worker for children with disabilities.
I am not the type of person to shout and stamp my feet to get somewhere, I tend to trust and hope in the system that the truth will prevail, but I am starting to see that it really is those who shout loudest that get what is needed in social care. Not only have I had to complain about the children’s social worker, but also about my own.
The meeting today was stressful enough, even though I was clear that the desired outcome was a new social worker. I have a meeting tomorrow afternoon with my own social worker and another experienced social worker.
I am clear about my desired outcome of that meeting too, but because it is about me and not my children I know I will find it harder to fight my own corner. I am supposed to be having support from three of my closest friends, all of whom know everything there is to know about my situation and struggles on a daily basis, so are well placed to support me.
My plan is to remain quiet and let the social workers do the talking because my social worker has asked me so few questions that I know she doesn’t have a clue what my day to day life entails. I know this because she believes it is ok for me to be in bed 6 days a week and that 4 hours of funded time at a day centre with other disabled adults is meeting all of my needs in line with the care act of 2014.
I do like going to the day centre because I know my husband relaxes when I am there. He knows I am safe and have support when needed. It also gives him a few hours to spend with the children, but it is not mentally stimulating. They have such a wide range of abilities at the centre and noone brings their own PA, so they plan activities that the people with the more serious needs can take part in. I wish they could differentiate the activities though so we all felt they were worthwhile.
I would also like to be able to have support outside of those hours so I can have some of my other needs met. My expectations are low.
She has cancelled two of the last three arranged meetings within an hour of the time she was due, so it will be a plus if she even turns up tomorrow.
On a different note, yesterday was a great day. I revisited the community group run by a local charity. This time I took both my daughters and my husband stayed too. The people running it are so friendly and welcoming, the activities are varied and suitable for all abilities and ages and I felt I was able to be a mum again there. I have struggled with that a lot over the last couple of years, but yesterday I actually felt I was able to be a parent for a while. Both my daughters want to go back again, so hopefully that will continue.
Spending time in a room with my daughters, taking part in activities together and being able to reach them to help and talk to them was lovely. It is something I took for granted before, but now I fully appreciate it. With the electric powerchair removing a lot of the struggles I had to get around before and saving my energy for more important things, it meant I had enough energy to stay for the whole session.
The social worker assumes many things, but one assumption she seems stuck on is that, as a home educating mother, I have endless energy to spend the whole day active with my children. I don’t know where she thinks the energy comes from, why she thinks I am in bed most of the times I see her, or what she thinks happens to all my fatigue and pain during these days, but she cannot seem to hear me when I repeatedly explain that we autonomously home educate. I spend a couple of hours online, usually on my phone because it is a smaller screen to look at, sourcing websites, activities and printouts for the week. I message these via messenger to my children as ideas and prompts. We also strew activities when we can and have a routine loosely based around their activities outside of the home. So to be able to spend four hours with my children, taking part in meaningful and enjoyable activities whilst chatting to people and feeling welcome is a big deal.
The fact that I immediately went to bed for a nap afterwards is neither here nor there.
It is only Tuesday now, and it has been a mixed week already. Bring on the rest of the week.
#family #mum #autismawareness #pathologicaldemandavoidance #PDA #ASD #helpingangelsCA #disabledmum #wheelchairparenting #chronicfatiguesyndrome #CFS #ME #fibromyalgia #degenerativediscdisease #tremor #pebbleart #inclusive #socialworkers #stress #socialcare #childandfamily #law #selectivemutism #anxiety #mentalhealth #busyweek
Comments