Sometimes I see posts on Facebook groups or hear people say that nothing really changes after diagnosis and there is no support. I feel for those people because for us, things have changed since diagnosis and the majority of it is all good!
This time last year we were living in a first floor flat, I didn’t drive, Dinky was out of school, we were getting 4 weekly reviewed funding for respite, and her statement of educational needs was not even near ready!
Now? Well, since the diagnosis we have secured a ground floor flat, with garden! We have a car- as I learnt to drive and passed my test. Dinky has a statement and is in a specialist school with 1:1 support that is currently meeting her needs and she is happier than she has ever been in an education placement! We have a social worker and a yearly personal budget for respite, which is flexible and really meets her needs.
Dinky has been signed off from the paediatricians at the CDC and is now ‘under CAMHS’ which is pretty pointless as all they do is monitor medication, and the ADHD wound Dinky up the only time she has been. Do we need the support of either? Not really, there isn’t anything else they can really offer. Strategies and everyday things are up to me and the school to maintain, is there anything they can do for us as a family? No, not really, just make sure the meds are the right ones and the right dose and that’s it. So I don’t mind not having appointments all the time, frees me up to help other families with children with special needs, whether that is fighting for the CDC to actually start assessing for PDA again, or telling families how we managed to get certain services involved, or how we got the statement or what to expect at a DLA tribunal. (Which I have just realised I never mentioned- I went to tribunal over Dinky’s mobility element of the DLA and didn’t have to say anything the evidence from the schools, the statement, and the social worker was enough for them to award it without asking me anything.).
Things are still tough, Dinky still has major meltdowns, and recently shut downs (where she doesn’t talk, barely even uses the makaton she is learning at school, doesn’t want to interact and just engages in repetitive vocal and proprioceptive stimming). She still has bad days at school where she needs to be physically restrained, and she even had a day where I actually had to pick her up from school because she went into crisis at home time and the taxi had to leave and she still needs to be restrained in public at times.
I think perception has changed since diagnosis. An understanding school, validation for me, my dad finally accepts his granddaughter is autistic and no longer tries to prove he is the adult, a social worker that asks for PDA info, all make for less stress and less battles.
We still get ignorance- Like the other week, I had parked in the disabled bay, as I am entitled to, using Dinky’s disabled parking badge (blue badge). I was getting dinky out of the car, I hadn’t managed to get to the boot to get her special needs buggy out, and along came a guy, must have been in his 40’s, he said “that parking space is for disabled people!”. I ignored him, and went to the boot, on my boot, is a sticker saying ‘not all diasabilities are visable’, I stood next to it when he said “you don’t look disabled”. I pointed to the car sticker, and said, “I am sorry but you seem to be under the impression that to have a blue badge you must be in a wheelchair and not be able to walk”. I got Dinky’s special needs buggy out, sat her in it, and said “is this better?”. Needless to say he didn’t answer and walked off. While I commend people who want to keep the integrity of the disabled bays, they have to understand that they might not always be able to see the disability, so it is probably best not to say anything.
It feels good to know things are really starting to come together now that I have fought for Dinky and won.
When I started this blog things were pretty rubbish. At times I admit that I didn’t always handle things correctly, hindsight is 20:20 after you have been through a tough time. I probably still owe some apologies which is one thing I am working on, some I have already given, and some things I refuse to apologise for.
This next year is going to be even better than the last as there is no more fighting for Dinky, and I will have the energy and the means to give her everything she needs.
So here is to an even better year!