DLA WAIT TIME THREAD 43

[Tracy37x]

DLA wait time thread 43

Call and select 1 5 2 3. If they say they cant tell you then ask to be put through to someone that can. Good luck xx

@Fee89 thank you. I did ask to speak to someone who could tell me but he insisted that no one is allowed 🙄 I'll try those numbers instead later I think xx

A lot of them won’t share the decision regardless of outcome but some of them will, maybe try and phone back and see if you can get through to someone else? X

Sorry to jump in but I'm in a similar position, my daughter was diagnosed when she was around 18 months with a microdeletion too! And what we were told is it's all ifs and buts and they can't say what will and won't affect her, like you said nobody knows much about it, hers can also cause a few different issues like schizophrenia, autism, microcephaly etc.

Pleased you jumped in! Nice to have someone else who's kind of been left in limbo with it all! I'm hoping when he gets to see the genetic team in Sheffield they might be able to tell me a bit more.
We already have the autism traits & his temper/anger is off the scale. His mood can change on a sixpence so it's a constant high alert. Luckily he has amazing teachers at his preschool & so far they have been able to keep his temper in check by distracting him with different things but I'm dreading September when he goes to infant & it all changes
Have you seen anyone from a genetic team? Did they allow you DLA even though we have no understanding of what our babies have? X

Scan date 25/1
2 letter received
text received 8/5
called today and said it been with decision maker since 10/5 and I should have an answer by 24/5

I sent mine free post as well, took 10 working days to be in the system.

What’s your scan date and did you receive any txts?

They 100% can tell you. Some dont have full access. But not to transfer you is very cheeky off them!!! X

Congratulations 💝

29/01 no text
I called them, a nice lady said awarded mrc and lrm.

Declined… reason she does not have a formal diagnosis of autism and attends a main stream school absolutely fuming. I give up 16 weeks wait

Do MR
My 8 year old daughter schooling normally, evidence was send OT report (9 precentile movement ABC) awaiting assessment for ASD and DCD and letter from SENCO High anxiety, ELSA weekly, friendships and emotional groups

MR. Fight it. Its based on CARE NEEDS. And both my girls went/go to a mainstream school. Do not give up thats utterly bullshit. We are here to help with an mr if you need us xx

Sorry, same happened to us, basically the same reason, now on week 11 of MR keep fighting for your daughter xx

I called back using the other numbers have been told we've been awarded MRC, so happy. Good luck to those still waiting. Thanks @Fee89 for suggesting I call back! Xx

Ah glad you called, saves you thinking all sorts. Congratulations 💝 x

Congratulations 🎊🎊we can relaxed now... So relief and happy for my daughter 💜

Thank you I really appreciate it! She is same does ELSA, has high anxiety. Spends all her time in the snug (senco room) And does have extra classes outside of her normal learning where they teach her what the class is learning a week before they learn it so when it comes round she can take it in better. She is 11 but emotionally, physically and mentally she’s like a 6 year old. I have to dress her, brush her teeth etc she doesn’t know how to read people and struggles with social cues. honestly just frustrates me. I just don’t know if I have the energy. We are waiting for a MRI and cardiology appt etc as she’s got a heart murmur which they think is to do with the Turner’s syndrome. She gets tired really easily. So my mind is just fixed on getting that sorted

I know its alot and can feel like everything is crushing you all at once, but just know you are strong and you can take what hiccups come along. Dig deep mumma and get your fight back. This is for her and to help make her life just a little bit easier. You have 1 month to do MR so take your time with it xx

Did she have an OT assessment? I think that in my case this report gave me 100% a win.

@Fee89 thank you xx

Hey, I sent my youngest daughters forms the same day as you free post aswell, when I called about my older daughters forms yesterday I asked about my younger daughters forms too and mine hasn’t been scanned on yet either, they said it takes a couple of weeks so don’t worry to much

@Eva1987 definitely! Thank you and congratulations xx

@Crazyhouse4 yes we spoke recently on my thread I believe, fingers crossed we get our forms scanned next week