So I have finished writing a second book that will be published next year sometime.
But I realise that we live in the “now” and a lot of people regularly ask me how to go about getting support for their child, what did I do to get noticed by the council and how I sustained that contact once I’ve been recognised as a “case”. Well, I have a whole chapter dedicated to how to get support in my second book but want to share a little with you now as it’s so important to many people.
I want you to remember that I am far from an expert but all of the following is what I think matters…I hope it helps.
It was when Jude was eight I realised how useless I had been at providing him with anything in life. He attended no clubs, didn’t do anything SEN focused such as attend activity or social clubs. The lightbulb moment came when a lady at school asked if Jude had a Social Worker and then looked at me quizzically when I said that he didn’t. I instinctively said, “does he need one?” I literally had no idea that a Social Worker was the initial key to gaining everything you need for your child. She pointed out some of the benefits and access I could gain to group activities and general support mechanisms and I realised then that I could be letting Jude miss out on so much! It twigged in my brain that Jude would need more and more intervention as he got older and that I’d better get a wriggle on if I wanted that in place before he hit his teens.
Here is what I have learnt about getting social support over the past two years:
- Be THAT parent. I used to be so conscious of not annoying anyone, literally one of those overly-polity little wallflowers who apologises for everything, even when nothing has gone wrong. I still apologise too much but I’m definitely a lot thicker skinned and certainly don’t hold back when it comes to Jude’s care. I am that annoying parent that stays on the case of a professional until they have done what they said they will do. Ok that sounds a bit aggressive; clearly I’m not that. I’m still very polite, I just mean that I don’t let anything go. If my Social Worker says that someone should have sent a letter across to the council then I check up a day later to see if it has arrived yet. If it hasn’t then I check again the next day. Nothing touches the ground with me any more.
- Email and call A LOT. You need to be visible, you need to make yourself a priority case as otherwise you will be left for weeks on end. It isn’t these peoples fault – they are given insane workloads but without bashing out all the clichés, you have to keep yourself top of the pile. It may sound awful but if you are struggling as much as I was and you’re feeling incredibly desperate then you must get on and do what you need to do. For me at some points, I was literally gripping onto these people for survival. My mental state was shocking and I think I cried in front of my SEN Officer every time I saw her or we spoke on the phone. Poor lady. I’m so sorry Chris! I also got into a habit of just dropping the occasional email to my Social Worker and SEN Officers to say hello and to find out of there is anything I need to do at the moment for our case.
- Find a contact and use them to find other useful connections. It took me about a year to work out who I needed to be in communication with as everyone seemed to have such weirdly titled jobs and frankly, I had no idea who could help me. I’d call the main phone number into the council and speak to a totally different person each time. I’d have to go over my story, who we were, answer the security questions, get passed onto a department where they would realise it’s the wrong department so I’d be passed on again and the whole process would repeat. It was so infuriating. Phone calls would last ages and that was just trying to get through to the right person. I finally snapped and realised that I wasn’t helping myself by being so disorganised so next time I called, the first person I spoke to who was vaguely useful, I clung onto. I jotted down their direct number and email and from then on I went straight through to them for any questions I had.
Following a lot of hounding, I was allocated my Social Worker after we received an initial assessment of need at our house. I had to insist on a Social Worker as prior to this I was kind of fobbed off and passed around a bit between Case Workers but I wanted that one person I could call when I had a question.
Think of it as a spiders web. My Social Worker would obviously then need to interact with other members of the social care and educational team within the council so I always made a note of key names and jotted down their job titles, phone numbers and email addresses. My web is small but I kind of like it like that as everyone is in communication with everyone else and I know I’m only a small group email away from knowing where everyone is in terms of progress on our case.
- Before I even thought to speak to the council, I did a bit of a web search for things Jude could do locally. The internet is a blessing in many situations and this is certainly one of them. I found a local branch of a national charity called Kids that offers amazing support and advice for people like me who have no idea what they are doing. A lady even came out to help me with the application form and following it’s completion we were gifted with our first quota of council funded support work hours. It was pitiful really, forty hours a YEAR (no I’m not joking) but it spurred me into realising that there is help out there. There are many charities and organisations out there that offer activity clubs, summer camps as well as family outings for disabled children so have a search in your area and see what you can find. Another fabulous charity is Happy Days (happydayscharity.org) – a national charity that happens to be local to me. They offer respite breaks to families and individuals plus they also offer wonderful groups experiences such as theatre trips for disabled children. Using obvious keywords in a Google search can pick up all sorts so initially I looked up terms such as “special needs clubs Hertfordshire” or “disability charity” as you always know that a local charity will have information on whats on in your area.
- First things first. Call your council’s social care department and ask for an assessment of need! The phone number will be on their website. You can’t access any support without this initial assessment so make sure you request one if you think a form of social care support could be helpful to your family.
- Keep asking your contact “what is next?” In the early days, I would leave the communication lines inactive for weeks on end, assuming that someone would still be fighting for the best help they could possibly get for Jude. What an idiot I was! Prior to my name virtually becoming a swear word within our local council walls, I was rather inactive in my pursuits. I would politely call up, almost apologetic to the central line worker as I answered their security questions before they embarked on a quest to find someone within any of the departments who knew anything about Jude. I would inevitably speak to different people each time which was completely counter-productive. Once I clicked my brain in gear I started to realise that I didn’t need to apologise for requesting a bit of telephone assistance and I also braved a few questions of my own. Once I had tagged onto a particular case worker, I always ended our conversation with a brief summary of what we had discussed plus a bit of a “what can I do in before we next speak” break down. It meant that I felt they had a goal, they had something to do before I called again plus I had a few things to focus on as well. They could be investigating a certain activity that was suggested to me or purchasing a specific product that was recommended for children like Jude. Any little thing that represented that menial step forward.
- Have a goal in mind. If you can relay to your Social Worker what you want as an end result then you have something to focus on. Ignore their sniggers and comments such as “you know it’ll be a fight” (something I heard regularly from the Social Worker I didn’t really like) when you give them your aims and keep strong in your mind that you are doing the best for your child.
- If you don’t like a member of your growing team then ask them to be changed. You aren’t friends with these people, you are merely using them to help your child. You have to become pretty thick skinned when it comes to council support so don’t beat about the bush and don’t take any crap. I had a Social Worker who basically accused me of exaggeration and who repeatedly told me that I wouldn’t get what I want. She also told me once, possibly when I was at my lowest state that there is no good crying down the phone to her. If I want Jude to get anything then I need to be a proactive parent. I can’t tell you how insulted I was to be told I wasn’t a proactive parent when I had already spent a year trying to get some help! I don’t think she liked me much as my “case” was handed over to someone else after a couple of months…this suited me just fine as frankly her bad energy wasn’t doing us any favours and I didn’t trust her to do her job properly.
- Write EVERYTHING down. If you are going for a biggy such as residential schooling then you need to justify it. Actually, even if you just want a bit of a break then you need to justify it. I got into a habit of writing down every bit of evidence that backed up my arguments so for example, Jude cannot cope with transitional stages of the day and once he had a horrendous morning waiting for his Support Worker to arrive for their fortnightly Sunday trip out together. I wrote down an email to my Social Worker detailing what happened that morning, why it happened and a short sentence about how it just highlights Jude’s inability to cope with these void moments of the day. Also remember to involve all members of you family so why *5 hours a week respite* (for example) is important for your daughter/son/other children.
Once you have got the support you need then it’s time to show your appreciation. Jude’s team have been wonderful – his final Social Worker would drop anything to come and see us and our SEN Officers were just fantastic too. I couldn’t have done it without their amazing powers from within the council boundaries and I am truly grateful for them and their hard work.
My first book, Living with a Jude, published by the Book Guild is available on Amazon or the Guardian Bookstore.
