My older daughter's three children are all referred and awaiting appointments. Combination of hEDS, autism and developmental delay. There are two appointments coming up in the summer holidays.
Her 6 yr old daughter, according to the podiatrist is 9.9 out of 10 for the stage of insoles she needs (legs still not straight) still experiencing knee and leg pain. She has meltdowns due to pain. She struggles at school with regards to lack of friends due to not responding to anyone. She ignores people! She chooses not to speak. (Just like her mum!)
Her older son - very 'bendy', 2 and half, potty trained since 2 yrs, very thoughtful, kind and helpful, completely non verbal. He had a hearing test last month - no problems there.
Then the youngest - main problem, the absences. He needs watching like a hawk - the house has to be completely 'child friendly' - he's quite kamikaze and climbs and throws himself from the most unusual places that you'd have never had thought he'd reach. Gates and barriers are a must. When she's busy he has to go in a play pen, which she regards as a 'punishment' for being kamikaze. My daughter has realised that there's a long term 'condition' and has asked who will look after him when I die?
We're told there's a two year wait for SALT, similar waits for everything else. Covid blamed for backlog. We approached the NHS with concerns about her youngest child when he was just months old. Her older child was assessed because of hypermobility issues which were blindingly obvious when she was 18 months old. She was seen at 2 yrs - got a series of exercises from a physio and discharged. It took 4 years (covid) to get the insoles (told to wear boots or hi tops when small). School insisted she wears 'school shoes' unless she had a note from doctor/physio - this was impossible to get hold of.
Considering that her youngest was born at 32 wks due to covid, I would have thought that help/support/more checks would have been automatic and more timely, based purely on prematurity.
I've spent a considerable amount on private care/diagnoses (no insurance) over the years, because I 'knew' that there was something wrong and we weren't getting anywhere. I'm not sure that it 'helps' in the long run. It appears as though it makes you get put to the back of the NHS queue because you get accused of 'trying to queue jump'.
I'm torn between waiting in the queue and expediting an immediate diagnosis for our youngest grandchild.
Between a rock and a hard place.
Story of my life. Is there a book with that title? If not - I should write one.
My daughter (twins) asked to borrow the spotty bag for her maternity bag last night. Her midwife told her to start getting things together and packing at her appointment yesterday. As I was walking out this morning at 6.15am, my husband asked 'what you doing?'
'I'm leaving you!'
His face was a pure picture. I said - I'm joking, he said I know you are (he didn't, he thought for a very sweet, very long moment that I was out the door. When I arrived at my daughter's, future son in law opened the door and I barged past, with large spotty bag in hand, saying - I'm moving in!
His face was a picture! He believed me! Then I told him I'd caught H out with the same 'trick'. He looked so relieved 😬. When he knew I was joking, he said I was welcome to stay as long as I want. 😉
I think that a fair few people have realised that I'm walking the tightrope.