To answer what may be your first question, has there been any changes to Bens behaviour, aggression and problems? The answer is no, not any for the better anyway, but then thats what we expect, nothing changes overnight. Did you think differently? Did you expect Bens problems to suddenly disappear? If so admit you are Bens disability social worker reading this or someone trying to refuse us the help we need! To those now puzzled and who are not the Social worker or psychic the reason I say this is about a month ago our new Social Worker came to play with Benas she said she had to meet him. She chatted to me about his problems and then played lego with him for about 15 minutes. A week later when she phoned about a meeting she asked if he had improved since her last visit!? You see thats what we have missed all these years clearly, magic lego! I really hope after the phone call she realised how daft a suggestion it was that her playing with my son would change matters so easily! Maybe it was wishful thinking, maybe it was lack of understanding of special needs, maybe she just thinks she is so wonderful she can cure anyone of anything, or maybe she just didn't think before she opened her mouth (we have that effect a lot with people!).
Since my last post we have had the end of term at school which included the usual changes to routine of sports day, different assemblies etc and of course this and knowing he is moving into a different classroom in September with a different teacher and some different children has really bothered Ben and of course this has meant difficult behaviours at home. Well more difficult than normal anyway! Normal for Ben of course I mean by this, not normal for your average neurotypical child who is far far different from Ben.
What does a Childrens' Disability Social Worker do to help a family like ours?
I might ask one day for their actual job description because I am sure somewhere in there words such as assist, help, support, and other similar words or phrases will all feature and I am pretty sure there will not be words such as patronising, rude, criticising, "guess what you don't actually know", judgemental, and presumptuous. Maybe I am wrong? If anyone reading this blog post has ever seen a Social Worker or Social work Assistants job description please do let me know.
Surely one thing we should be able to presume is that this group of social workers will have some experience or training when it comes to special needs and if they do not understand a child's needs they would ask the parents or a professional dealing with them about it and accept they are human and can not possibly know everything. Well it seems presuming that is very wrong! In my experience many Social workers in this team have watched a few documentaries on autism and know just about that. They believe when they have met one child with autism they have met them all. In reality if you have met one child with autism you have done just that met one child with autism. My child may have a label of autism but he is as unique as any other child out there. He is also a boy, he is 6 and he loves sweets, so if you meet another boy who is 6 and loves sweets would they be the same, well of course not so why does that mean two kids with autism are the same?! Or is it that people are scared of autism and cant bear the idea that "they" are not all the same and there are more than one of "them" to try to understand!? I never presume anyone understands my son, I would never expect anyone to who hasnt lived with him but what I do wish for is that everyone who sees us in a professional and social capacity will at least understand that they do not know what it is to live with Ben, there are only two people in the whole world who know this, myself and my husband.
The reality of the latest of our allocated Social Workers
So, a few months ago we had a review for Bens direct payments. This is a meeting with Social Services and anyone else relevant to discuss Bens needs and what respite they think we need and if what we have been given is enough. We only started getting direct payments in February, not many people truely understand why we get them and believe that as two parents at home with one child we shouldnt need them. If this is you then please read through my blog, imagine living with this 19-20 hours a day (not that imagining puts you in our shoes but its the best we can do isnt it!), yes we do have a break when he is at school but thats five days a week 40 weeks a year, what about the rest, what about us getting a chance to do all the things we cant easily do when Ben is home. We can not take him shopping, we struggle to take him anywhere in all honesty - we do because he needs it and he is entitled to a bit of a life but it is hard for us and him whenever we leave the house, what about us getting a normal amount of sleep? Not to mention free time! So then think actually the 2 hours a week of respite we get is just allowing us get 2 hours of a break a week because while he is at school we often sleep and have to get shopping, clean house and try to prepare ourselves for the beating and abuse that returns when he gets off the school bus! Anyway I digress, at this meeting the Social Work Assistant (Yes we don't even have a trained qualified Social Worker) decided this behaviour we have been mentioning and asking for help at meetings for over the last maybe 4 years or so is not right and we need help! Of course the idea someone wanted to help was lovely and we didnt object to her coming to visit a week or two later to discuss further.
The home visit came one day when Ben was at school (yes another thing that happens when he is at school and fills our time, appointments etc!). She discussed all the things we have tried and continue to try to help improve the aggression and violence we suffer from Ben and the reasons why we physically have to restrain him at times. We restrain him for both his safety and ours, as mentioned before this isnt through hoice this is through necessity. I would also like to add I have never harmed my son during this and he sometimes calms as a result of being restrained, other times it is just enough time for us to breathe and calm him to the point he is not causing as much pain as he was before. I do not choose to do this to my child, I do not want to cause him unnecessary physical or emotional uncomfortableness however this is a necessity in our house, this is the only way we can stop him from doing any more damage to himself than he already has and stop him from seriously harming us, particularly me as I am the one who most suffers from his violence.
This was the day the Social Worker (well assistant but you know what I mean) first mentioned child protection. she said that due to us physically holding Ben she believed we may have to have Ben placed on the Child protection register under the category of physical abuse. As I am sure you can imagine this broke my heart, Ben was placed on this as a baby for a while due to his natural father and the thought that I was being seen as equal to him and that they see me as causing my son harm was terrifying. Again I must point out that we have never caused ben any bruises or marks due to this and it is necessary for his safety and ours. We have never been taught restraint techniques in order to know how to do this properly because we are his parents. We have asked for this for years as Ben is very big for his age, he is 7 in november and his clothes are mostly ages 8-9 with a few larger 7-8's. Just to put this into perspective due to his height he is only a 3cm off not needing any kind of child restraint in the car legally, and he is so heavy he is hard to lift now and this is made much harder when he is physically lashing out with his entire body. On this occassion we were told that she would need to discuss matters with her manager and see what the procedure is.
As stated we have never been given any teaching of techniques used to restrain a child with violent behaviours like Ben however we have researched MAPA and this is what all the staff and the Special Needs School Ben attends are trained in. We believe we do something a little similar to this, what we do essentially involves "bodyhugging" Ben so that he can not easily move any of his limbs or use his head to headbut whilst h