Here are some suggested organisations that offer expert advice on SN.
eeg at Great Ormond Street(16 Posts)
I have an appointment booked in a week at GOSH, I am dreading it. It just arrived in the post.
I'm fortunate to live in zone 6 (not tube line though) but I'm dreading taking two yr old dd here. She's recently cracked me with local supermarket visits and I've gone online, something the first 3 never did. She's a tiny wilful handful, the idea of multiple train changes and a big unknown place coupled with an appointment where they want them to sit still is enough to have me hiding under the bed shaking.
Does anyone have any tips for visiting there? Or can reassure me it's easier than the environment at my local hospital, which is okish but stressful.
I'm a bit shellshocked anyway, with zero to appointment every few weeks anyway. It's a bit much, GOSH seems...scary.
GOSH is the Holy Grail for so many parents, that you will be the envy of loads of poeple, but I do really fell for you having to manage that journey.
The people I know who have used GOSH have found all the staff fantastic and caring. I think they will have a much more experience of the full range of kids' behaviours, from huge decibels to zero, and from frenetic to static, and all points in between.
If the other people on the tube can't work out that neither you nor your child can control the untypical behaviour then that's their mistake and their fault.
If I was travelling with an overloading toddler, I would be tempted to say to scornful passengers that i was going to Great Ormand Street for tests, and would gladly relieve my DC's distress and theirs if any of them could give me the money for a taxi.
Oh and if you talk to GOSH they may put you on the list for Patient Transport for future visits so you go in an ambulance or taxi in future, but the service may well have been cut since my time.
A friend of mine uses a sunshade cover over her Dd's buggy to allow her to hide from people in busy places. Its not a complete blackout and she has her Ipad on her lap with her favourite programs on.
She is just trialing some headphones so that not everyone has to listen to her programs.
She is a bit older than your Dd but has SPD, ASD and is known for her humungous meltdowns
I had a friend who used ear defenders and a tight hood on the tube. She said she got some odd looks in summer....
Sorry I may have been unclear in posting in sn. Dd is just a difficult two year old, rather than having sensory needs as such. She's speech delayed with glue ear. She is constantly running off and doesn't understand or hear being called. She's really really wilful and will scream like you're pulling her legs off and cannot be distracted. She may last a while but will loose it on a long journey. She defeats me with her wilfulness, and she's number four.
The appt is about possible seizures, I posted here as I thought it likely posters would have visited gosh.
I'm a bit shell shocked by it, dh is pleased about gosh but it was a shock. Its been very very quick, under a month since seen locally.
If you are certain it is just willfulness then you need to ignore, ignore, ignore and then ignore some more!! And grow a thick skin for all the cats bum faces
Tantrumming toddlers often look around to see if they are getting a reaction, ignoring them can diffuse the tantrum better than anything!
Best of luck with the appointment
Poor DC must be getting very frustrated at all these (from her point of view) unreasonable parental demands!
It is an odd moment when the system does finally swing into action. On the one hand it is a relief to know that something is being done at last, on the other hand it is starting a new phase which most people don't have to think about. And then there is the unknown outcome...
AND you have a pig-of-a-journey.
But you are definitely doing the right thing, and GOSH is lovely, even if it seems a bit daunting right now.
The pig-of-a-journey will come and go - I hope you will have lined yourself up a nice treat for when you get home.
Hi, I am posting from GOSH at the moment. It is a lovely hospital in many ways, but peculiar. I don't know where your local hospital is, but compared to mine this is what I notice.
It's actually not that big, and finding places inside the hospital is easy and in working hours there are loads of volunteers to help.
Waiting areas are designed for children with loads of toys, DVDs playing etc.
Other parents are stressed, everyone here has their moments.
No-one will mind a tantrumy 2 year old, or 4 year old or 6 year old or 8 year old etc.
The Concorse area is peculiarly Ill equipped, there's a cafe but it is noisy and it's better in my view to bring food, buy food on your way here.
Being late happens.
If you can get to Holborn, Kings cross st Pancras or Euston it can be as quick to walk rather than do a tube change to Russell Square.
Have been many times and arrive at Liverpool Street Station and did it by tube once never again (but DD uses wheelchair) I now use black cabs and the drivers are so helpful and on a few occasions have refused payment.
Please do not stress about your LO throwing a wobbly the staff will be quite used to it. (Here speaketh an Old Paediatric Nurse and mother)
Two good ideas, thank you.
I could either drive to outer central line and get to holborn or train to Liverpool street!
Only work to sort now, so many appointments. How do you manage time off? I feel guilty all the time.
Oh also, thank for the reassurance.
DD is being quite delightful this week, I'm hoping it lasts for the journey! Or rather I'm getting better at understanding her, she's got more signs and noises that are clearer, plus rather than an instant flip to getting her desires wrong she just shows you the back of her hand and waits!
I'm so nervous about going...my latest tack is to try to convince myself she's fineeeee, all in my head....
get guts to approach a hcp/ have a hcp approach me
google every syndrome known.
find logical reasons to dismiss.
convince all a mistake.
Ok, in respect of those points, on time off my husband and I have a lot of flexibility. We both work, and actually in " high power " jobs, but those are the jobs you can work from anywhere on. So at the moment we are both emailing, advising and doing stuff from the wards. Not ideal and not like being in the office but it works for us. For this visit I am on parental leave. For other appointments I have used flexitime.
Others do all sorts, there is one couple here where the man is staying nights and then working in the days while his wife and other children are here, that I couldn't do.
There is something about saying great ormond street which means people say yes when they might otherwise say no. And help. Just accept every offer you get which might be useful.
One of the other things about here is they have seen it all before. So if there's an answer you'll get it.
I work in a school, so the guilt's high I guess. Appointments for my own dd have at times meant a missed appt for someone else's dc. I made the mistake of re-arranging one of my dc's hearing tests as a SALT cam in to meet a child at work, but it meant dd waited another 3 months for me to find out she had hearing loss which I felt awful about. Obviously no flex-time and our local services are term-time only.
Well...she did me proud!
Apart from transfers on the train she was an angel, and it just meant young good looking men ran over to carry the buggy upstairs while I held her
She was amazing for the test, just let them stick the wires on and played cute. She had the technicians by the end carrying her down the corridor, getting cuddles and popping in the staff area with her to show off their kisses and cuddles! It was like watching someone at a pamper session, she rolled in the attention. Maybe that's the only problem...when you aren't focusing 100% 1:1 on her....
They couldn't give feedback, but I think they saw what I saw at the eeg. The tech clicked her fingers to her a few times and asked 'are you in there' (in a pleasant way) as dd went quite blank mid-interaction.
Join the discussion
Please login first.