Dealing with not knowing what the future holds

[used2bthin]

I am a planner. Not organised really but Ilike to know whats happening next. DD has medical needs and I am used to coping with them, I know when to take her to hospital, even have a written down list of what to do with her meds in this case or that, when to inject, when its ok to sit it out at home. But with her communicationa and developmental needs its so impossible to know what to do andwhat will happen.

Well thats not quite true Ihave strted getting things going (after being sort of frozen for a while). But I find it hard to even know how seriously to take it all. According to the assessment she had she has "profound speech and language difficulty" and is aged at two for that then three for social skils and four for physical (she is four tomorrow). Her SALT said she is definately a mainstream child but I have no idea what that means and I need to think about schools and don't even know if she will be ok.

Aso keep worrying about epilepsy after a weird episode earlier in the year she had. And her dads natural mother had/has frontal lobe epilepsy which I think can be inherited.

Bit of a rant really don't think there is an answer.

Hi used2bthin - Dh and I had this conversation last night strangely enough. I like to be organised and feel like I am in reasonable control. And if someone had told me in January what this year would bring think I would have stayed in bed for the whole of 2010.

Ds became really unwell in May and after 10 days in two different hospitals was eventually diagnosed with frontal lobe epilepsy. Its been really difficult to let go of being able to take charge of something. I will never forget the feelings of helplessness watching him so ill (he was in status epilepticus)and I still think I am recovering from that.

But you're right. There is no answer. And I think somewhere for me is emerging a different Mum and person. I think the phrase that comes to mind is rolling with it. I can't change it, or make it go away. We can only do our best every day for our kids.

Hope DD has a lovely birthday - she will be ok cos she has a Mum who loves her.

Thank you loflo, she is blissfully unaware of all the anxiety or at least I hope she is.

Sorry to hear you have ad such a hard year. DD was diagnosed with her genetic condition shorty after birth and so my experience of motherhood has only been of parenting a child who needs medication and can become very ill. I sort of got used to it gradually alongside getting used to being a mum. ut the developmental stuff has been such a shock, its as if I thought because she has such a serious medical condition nothing else can go wrong.

I must be a huge shock to have your otherwise healthy child suddenly need so much extra care and being so unwell. es rolling with it is probably the only way isnt it.

DD may not have even had a seizure, it may have been a collapse due to high blood pressure (related to her condition) or something unrelated but I can't help but wonder and of course have been googling whch I should know by now is a bad bad plan!

Hi used2bthin.....love the name sounds like me too!!
Firstly I want to say happy birthday to your dd. Please don't let any thoughts spoil the day. I know it's easy for me to say, however I do think special days make us think even more.
My ds has an irrepairable heart condition as well as other medical conditions including seizures. His down syndrome also contributes to his developmental delay. I was told the prognosis for this would be age 3 at 15. Though he is nearly 10 and developmentally 2!!
I remember him being rushed into hospital earlier in the year with the docs saying his heart had detrioated. This was really hard to take on board and I remember asking was he going to live and not being happy with the reply of I can't answer that!!
Sorry rambling now, just remember some days are better than others and the onset of marked occassions make us think, worry and wonder more.
My friend always says Dream as if you'll live forever, live as if you'll die today. I love this and really should try to live by this myself.
Hope you all have a great day.

Birthdays are the worst for us mums to be thinking about what our dc should be doing...and makes us look at negetives more.

tbh her scores are good comparing to ds! She is on target physical...social on target and only two years behind speech and lang...now most dc with asd are usually in under 1yr at four with speech and lang and social and even physical ...the speech and Lang therapist said she is mainstream ...this is great news.

The family epilepsy try not to worry as it is 50%/50% and you may spend a lifetime worrying about what may not happen.

Happy birthday for dd tomorrow...don't worry, have lots of fun with your dd and think of that day only...your dd is 4 and you aint going to see it again as they grow up so fast so make the most of it!!!!

Thanks devientenigma and want2sleep. Yes she has progressed loads s and l wise recently so its not a bad situation I think what I struggle with is thinking long term because I was told she may well catch up eventually with support but also may not its just impossible to tell. Her social skills are a year behind and visual about six months bhind whatever that means! Have booked her in at i can to see if I can get a less vague description of what she needs but she has been referred to an early years sen inclusio n service who will help me with school and possible statement etc.

I like your friend's saying devientenigma. This time four years ago I was just hoping that she would be ok and thinking if I just get to keep her I won't care what ese I have to deal with so I need to remember that I think. Sounds like your DS has been through the mill medically too, I remember thinking how ridiculous when I heard mums worrying about schools and thinking they are so lucky to be able to assume their DC will be here at that age but of course now I am doing the same, it is a good thing really isn't it? Waht a frightening question to not have an answer to.

Well sunday DD fell in the river being looked after by her dad who thank goodness fished her out by her foot! So thankyou to whoever is in charge for the fact that she is here for her birthday today! We are off to a s n session at the children's centre then a farm park with my parents. Lovely DD had yogurt and strawberries for her birthday breakfast and is now watching c beebies and doing her new puzzle so I will get off and be with her.

Have a lovely day happy birthday uesd2bthin dd:)

You sound a lot happier...:) cherish the day as we even though all have difficulties are blessed to have our dc here every day:)

Oops accidentally logged in whilst on here looking up farm park post code! Yes much happier, I often wish there was a pill I could take to stop the night time anxiety, it always seems much better in the morning.

You are right we are, thank you for birthday wishes too