Don't even know if I should be posting here.

[misdee]

Friday before 9.10am was normal.

Then we saw the GP about an ongoing issue (baby's face drops on one side at times). First time we had seen the GP as the HV had said not to worry as both sides of the face moves when she smiles. But I was worried so I booked to the see the GP.
Ended up with an urgent appointment at paediatrics at the local hospital.
Baby has facial nerve palsy of unknown cause. They are booking an MRI and neurology. Because she can move her forehead and eyes, it's unlikely to be Bell's palsy. They are looking for an upper motor neurone lesion. (It's amazing how much they put in notes these days to hand to parents).

So yeah, I don't know what's happening with my baby girl. She is 9 months, developing slower than her 6 siblings, but getting there. Been trying to get a SALT appointment sorted as she chokes on food and drink most days, but seems that the local website that's says HV can refer is wrong and I need to go back to the GP.

Just got to keep going until we see neuro I guess. Maybe some answers soon.

It must be tough coming on top of everything else. I find it kind of hard to remember how I first felt now as it seems a lifetime ago but when autism was first suggested to us it was a horrible shock and everything felt very bleak. How old is your DD? We found between 3 and 3.5 quite hard as we just had the news "fresh" and all the horrible leaflets and it was so unclear what was going to happen and easy to fear the worst. I spent a stupid amount of time wondering about which "bits" of DD's behaviour were autistic.

All I can say is that for us things have improved a lot with time. DD has come on a lot and also we've just adjusted our mindset. We are doing a bit of "distance" ABA (which means it isn't really ABA as it's up to us to do it, and we have basically just been picking one skill at a time to work on with DD so it is very far from 40 hours a week!) She also gets a bit of SLT and some play support at pre-school (now school).

I think although there are kerbillions of papers on autism and millions of people claiming to be "experts" there are still very few high quality studies which look at what you actually care about (happiness, self-acceptance, quality of life). It's disconcerting "driving blind" (but I guess you are kind of used to that!)

The thing I feel has been best for DD (but it's only a feeling) is lots of talking about feelings! I think she finds it hard to read her body, which also makes it hard for her to read her emotions. So we do lots of talking about how people are feeling in stories, in life, etc. etc. Probably your DD is a bit young for that but if you think it might be good for her too let me know and I can send you a list of my faves. Now she is older we also do a diary every couple of days about good and bad things that happened and how she felt about them.

I've also found huge strength in reading "Neurotribes" (autism is a culture!!) and watching adult autistics talking about their autism (and sometimes their kids' autism) on YouTube.

to you. It's so much to get your head around when you are already getting your head around so much. Give yourself a break. She still needs what she always needed most and what all children need most which is love and acceptance and you can do that walking backwards in your sleep (which is how we all function a lot of the time after all ).

We have a autistic teenager already and she is very positive about her diagnosis. It's not always easy for her but she is generally happy and content. And a very intelligent girl.
Dd6 is very similar in many ways but with the added complication of leukodystrophy.

So I have the same mutation

MissDee how are you with that? I am imagining that was a big shock!

Do you know at this stage what this means for you and your other kids?

I hope you are ok.

It was a bit of a shock.

I am now waiting for further tests to be arranged. Including an MRI.

We have decided to have 2 other children tested to start with. Both have larger than average heads, clumsy and autistic/autism traits.

Well....

Two more of our children now have the same diagnosis. Sept is now booked for MRI for them, and one is having an EEG as well. They are both under the same team at GOSH as dd6.

I am still without a neurologist for myself. I have had my referral rejected by the local teams 4 times as the condition is untreatable. They are suggesting we go for a london hospital and specialist centre there for myself

That seems rubbish that you can't see somebody yourself (even if just for initial advice and somebody to go to with questions). Does it have practical implications for you? Or for your other children with Dx?

Hope you are doing OK: how is DD6 enjoying nursery?

The main concern for myself is whether I have any cysts or areas of damage, and what I should be looking for, what care I should take, are there jobs I should avoid, and what the long term prognosis actually is, if they know anything long term.

Dd6 starts school next week

She has come on massively this last year. We have an EHCP in place for her, no fight at all for it. She will attend mainstream 4.5 days a week, and a half day at the specialist nursery each week too.