New here and saying hello

[laura4jasmine]

Hi, I have been reading MN for a few weeks now and have finally plucked up the courage to post. I hope it's ok for me to be here, I know lots of you have dc with very serious conditions, but I feel very isolated and could use some company.
I have 4dc. DS2 was 4yo yesterday, he is a lovely little clown and just lives to make you laugh. He has been having Migrane/epilepsy turns since he was about 6mths. As he got older I just knew things weren't quite right. He didn't walk till 19mths and fell over constantly. I kept trying to get him to an eye Dr as he had a squint (now and then, not constant), but the orthoptic dept weren't convinced and he didn't see the Dr till he was nearly 2yo. Took the Dr less than 5 mins to say he has very bad sight and a def squint. It has also been apparent that although he is very bright in a lot of ways some things just 'escape' him ie: he could count, do colours and shapes, by 2.5yo, but still cannot get the wrapper off a sweet. Finally got ref to an OT and was SO relieved to find someone who 'got' him. She says he has Overly flexible joints, weak core, Proprioception, Gross motor planning and sequencing delays. He also has speech therapy for delay and stutter (no words at 2yo). He's making great progress at speech but the rest is very slow. Has to wear boots otherwise he still falls over, still not very good with stairs-kerbs-car, really struggles to dress and undress, no where near toilet trained. Got ref for classroom support but not confirmed yet. He got awarded DLA mrc at the end of last year.
DD2 is 2yo has the Migrane/epilepsy condition as well, but much worse. She gets very dizzy, staggers and falls over, then will vomit and pass out, she will usually be out for and hour or two. When she wakes she's usually ok for a couple of hours then it all starts again. This can go on for days on end (the longest has been 9 days so far). When she's dizzy the only thing that helps is laying down, so she spends hours laying on the sofa and even changing her clothes or nappy can make her sick. She just got awarded DLA hrc last month.

I'm struggling to come to terms with my children having things so hard and just want to make it easier for them. I find it very difficult to go to toddler groups as dd2 is ill so often so feel quite alone as I don't have family close by. Sorry for the long ramble and if you got this far thank you. Hoping to make some new friends and be of any help I can.

I'm sure you'll be an asset to the board, laura. I've found MN and particularly the SN board to be a real help and very supportive over the last 18 months or so.

Does your DS2 start school in Sept? Have you got a statement of SEN? What sort of support does he get at nursery/preschool? Education seems to be very separate from health and you'd often think that you could assume they'd communicate when they don't.

I'm sorry your DD2 seems to have it even harder than your DS. At least you'll be well versed in how to get her support. Small comfort, I suppose, but important.

Welcome to the board, Laura.

PS, is it your birthday, too?

Hi and welcome Laura :)

hi laura4jasmine and welcome to the sn children's board and don't worry we don't bite (unless you are a particularly nasty official who is making life harder for our children when we might be tempted ).

It sounds like you have a lot on your plate with 4dc and to with additional needs. As you'll know from browsing, there is a wide range of posters familiar with different sns on here and definitely some others with experience of epilepsy, hypermobility and speech delay, but all of us can empathise with the feelings of isolation and wanting to make life easier for our dcs. It's good that you have got dla sorted.

It sounds like your next challenge will be to ensure ds2 gets the support he needs in the classroom when he starts school. A good place to start is to make contact with your local partnership with parents - link here :www.parentpartnership.org.uk/ - but also post on here of course..

to two

Thank you so much for the warm welcome :)
Ellen, yes, it's my birthday today! Ds2 is at nursery for another full year (due to cut off date in Scotland). This will be good for him as he'll be that bit older when he starts P1. He hasn't got a statement, but his nursery teacher ref for extra help and it seems they are going to give him 1:1 support in nursery from Aug, apparently it's unusual to get it before P1 so I'm very grateful. My DH family are the 'he'll get there in his own time' sort and didn't like me saying there was issues, but they are more accepting now 'the professionals' agree.

Dd2 has just started meds for her condition and I'm just hoping it works. My DH has the Migrane/epilepsy and the Neurologist says it is such an unusual combination it is probably genetic. She could potentially miss alot of school but we'll take it one step at a time, she starts nursery after Christmas.

Ahh, Scotland, very different system to England. Advantages and disadvantages, I think. We have some Scottish parents on here who could give you specific Scottish system advice, when and if necessary. We can all help with the rest of it!