Having a down day - need a hand to hold please [sad]

[Sleepstarved]

DD has not been dx with anything specific, other than a gross motor delay, and docs seem to have ruled out CP (I posted on here a little while ago).
Things seemed to be going well, she had progressed enough for physio to drop her down from weekly sessions, to fortnightly and now monthly, paeds had said probably just a floppy baby who will catch up, portage said she was borderline qualifying so will put on waiting list but by the time she gets to the top might not be needed.
So why am I so down?
She has stagnated the last couple of weeks. She is 13 mo this week and was getting from prone to sitting but has stopped now she is commando crawling, she has stopped finger feeding herself and doesn't even want to take the loaded spoon which she loved doing.
I feel like she will never crawl properly and as the months are ticking away she falls further and further behind.
I want to scream at her, just do this stuff, be normal, stop doing weird things. I don't obviously am so frustrated. I cannot get past the 'why can't you be normal?' stage.
We are trying to TTC no 2 and am scared stiff we might have another baby with problems, not that anyone has said DD even has SN.
How can I accept this is the way she is and move on?

It takes time - and I don't think deep down any of us ever get over it properly.
I just think 'normal for him' - and normal for anyone is different to the next person.
Other peoples 'advise' who do not have a SN child is the hardest to cope with - just smile and think 'fuck off' - rather than actually saying it - but you can vent it here - because we all understand.
xxx

Will happily hold your hand, I'm having a down day too.

Sorry i have nothing to say to cheer you up, but please have some chocolate and a cup of tea.

Hazy and Nev,

Feel in utter limbo, not NT and not SN.

If we wish hard enough will it all just go away?

Sleepstarved I don't want to be one of those embarrassed people saying 'oh she'll just catch up' but actually commando crawling is brilliant and maybe she needs to concentrate on that at the moment.
Or maybe you need to put your foot back on the gas re physio input
Sorry you're having a down day. I have loads of them, but find sunshine and/or meeting up with a friend helps.

I'm sorry, it sucks and some days just suck harder than others. Dont have any advice - somehow you just keep going. Stay strong keep breathing

Hi sleepstarved, no real advice I'm afraid just wanted to add my sympathy and agree that sometimes it all gets a bit much. DS2 has Aspergers and I found the early years before he was diagnosed with anything very hard. The will he/won't he and the "what actually is it"?! Although it was difficult, getting the diagnosis felt like a relief in a way because at least we could put our fingers on what was wrong. Just take it one day at a time, enjoy your DD for who she is, not who everyone else thinks or says she should be, and don't be too hard on yourself for feeling down. Enjoy the sunshine and have some chocolate . There really should be a chocolate emoticon on MN I think!!

Hi sleepstarved,

Have a hug

My dds were both physically delayed. We just get told to wait
Dd1 never crawled and just shuffled on her bottom and didn't walk till after 2 years. Dd2 was different but odd movements and didnt walk till 22months.
Have they checked for hypomobilty? dd1 has very tight tendons which they have no reason for. We questioned cp but it was ruled out as the "catch" when they move her foot doesn't happen all the time, so we really have no clue.
She will get to certain points it might not be the normal for others but will be normal for you an her. It just takes time to accept it.

Are you doing a lot of daily physio yourself? I found it helpful to focus my energies - I'm sure our physio thought I was deranged, as I worked dd2 hard.

And then take a few days and be kind to yourself.

But I found 'doing something' to be the best way for me to ignore pessimism... I could ignore the 'what ifs' if I was still working hard towards goals.

Dd2 only picked up her cp dx just before she was 2. She crawled at 15 mos. she's 8 now and walks, runs, skis, goes to ballet and swimming... The first two years were hard hard hard.

But keep battling on. Work that baby! Everything you do now will help. Honestly. Keep going x

(I'm doing down today, as well. Sometimes it's best to roll with it, and then pick yourself up and keep battling on. We can't be superhuman all the time. )

Buy chocolate.
And drink wine.

Agree with the chocolate and wine!

I find that doing something everyday that ds and I enjoy really helps. It can be something that I know will help him physically or developmentally - swimming, music, etc or it can be going for a coffee, blowing bubbles or feeding the ducks. I felt better today, watching ds trying to eat soup at a friends house - at the moment the whole world of feeding is fraught with worry, but watching him stick his face in a bowl of soup with such delight made my day!

Do you have a developmental journal? We got ours from Early Support - seeing ds making progress - even if it is slow, or has taken tons of work to get there, makes me feel so proud of him.

I hope your day improved.

Any time a child's progress reverses without obvious cause, their GP and probably paediatrician should see them again to find out why. Something might have been missed, she might have an infection, the underlying issue might be worse, it could even be a stepping stone to a new skill, like the terrible scrawl when you first learn joined-up writing.

Call your GP and paediatician asap, and you might as well leave a message for physio, health visitor and portage as well. If nothing else, a recorded loss of skills means she'd be a higher priority for services.

it's very hard when you're at that are they normal/not normal stage. Once you know what's going on, even it it's more of a description than a proper diagnosis, predictions can be made and accepting is easier.

She's not regressing though, just stalled. I don't think I would worry about the spoon - it's blooming hard work and if she's expending energy commando crawling, then she probably just wants you to feed her. I still end up feeding dd2 some mealtimes when she's agonisingly knackered...

She's just consolidating that crawl...

Use the 'stopped doing stuff' as a reason to jump start services, if you feel the need, but I wouldn't worry too much. The change of emphasis sounds within normal bounds, albeit hugely frustrating.