When you take a call out of the blue and by the end of a very pleasant phone call lots of positives, you don’t have a support worker anymore!!!!
I enjoyed the call so lovely to hear her voice, there’s no explaining, she’s been Oscars support worker from diagnosis at 2 years old.,She’s in tune with him, knows what makes him tick, always willing with correct advise has been a comfort blanket for me too, we are able to discuss anything, she has fought our corner many times.
when Oscar has needed anything she has advised me how to get it, I’ve cried on the phone to her and we have laughed, She’s delivered bad news, good news and information shared and most if all always returned my call and seen Oscar from Nursery to pre school, attended review meetings, talk about child meetings and dealt with the incontinence team for us, she also advised and supported us as a family at all transition stages, the most important one and the biggest one was School, she was honest with us about what she thinks Oscar needs, she has also supported us throughout not only Oscars diagnosis at the start but his ongoing health issues his anxiety and his absent seizures and his eating disorder , a whole 4.5 years of information I can just pick up the phone and I don’t need to explain, so when she called to say she’s handing Oscars case over as she’s kept him longer than most, and she’s handing him over now to the school team, which is a made up of three equally amazing people , but a change for us, and after the call im not going to lie ,I was gutted, as Oscar grows his comfort net of support is likely to shrink, the school team are amazing and have supported us amazingly in the last year., but in an ideal world I would have both,Just because as he grows I know that support will get less and I feel right now I’m so comfortable with the set up ,I dont want the change, who would? Just because I carry my list well, doesn’t mean it isn’t heavy, too heavy sometimes!
So many people might not get any kind of support i know that ,and we have been so lucky, but on the other hand as we are talking and she explains there’s a waiting list!!! I know at that point someone somewhere hasn’t any support and I have lots, so I have to agree to be signed off from early years support , because to have the consistency we have had and smooth transitions because of that support I have to say it’s job done and defo someone else’s turn , we are super lucky to have had that and will always be grateful but in my mind I know this is the start, we will eventually be entering rooms and they don’t know Oscar at all! So the question is, what am I going to do about it ?my current plan is this
1.Value
2.Review and revise
3.Be even more outspoken than I already am
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Value✔️
I’m going to value the support I have had and set that as the standard I expect for him, consistent, honest and realistic, I will keep in my mind the waiting list and I will be grateful for the support I am offered and I will make full use of it .
2.Review and identify✔️
I feel as we begin new relationships with new support workers I will review how much support I feel we need, and identify if we need it ,but not over use the support that we don’t, we are far more knowledgable and confident than before and strain on services is at a high, many support workers have far too many on their caseloads which can dilute what’s available, I’m aware services get harder to source as our children grow so it’s important to identify the needs now to get them in place now .
3. Be Outspoken ✔️
Without bring rude, I feel if something is inadequate you can say so, you are your child’s voice you set what’s acceptable for them , I’m finding schooling provisions very hard at this time it seems to be one size fits all, which only works on paper and ultimately you end up owning the products of someone else efforts! recently I’ve been very clear, Were not friends, I don’t need friends! It’s not youth club.
Oscars school really care about the children but the cuts in budget means cuts in services and you end up bargaining or making use of what’s available, when really it isn’t enough and with the best intentions in the world everyones making do with inadequate services!
And that’s not how it should be in a Special school you fought to get into.,School staff want the best too but hands are tied with what’s on offer, and we’re left thinking this isn’t good enough!
Being nice is essential obviously but it’s not all my child needs to fulfill his potential in school and be a success in life, for his identity, to achieve his personal best, he requires a bespoke education as he has a complex diagnosis that doesn’t live on paper, it’s real it’s complex it makes everyones jobs harder and there’s a duty of care from the Local Authority to put services in place for him.
I won’t accept failure, but I’m also not silly, the level of need seems to dilute as We grow, and so I’m starting right now to Value, Identify and advocate for my son and others to improve services overall, I think my years in fostering put me in good stead here, I’ve information gathered to advocate before, and I’m tooling up, with the full support from his school and other professionals .
Watch this space
