Still new to this..how do you cope?

[Firsttimer7259]

I am not coping with life with our 2 year old with GDD. She is doing ok - happy girl, no health problems, just very delayed. I am not. I am worried, upset and have no idea how to think about/plan for the future. I am just struggling somehow, cant focus, exhausted all the time. I feel like I cant speak to anyone anymore. I am so angry and upset. People seem to keep wanting me to say it will be fine when I have no way of knowing how it will be. When I do I feel like I am lying (even to myself) when I dont I feel like I am being rude by not smoothing over ugly things. Or like its my fault because I should be more positive. At the same time I feel like what is happening to us is tragic (my H has been diagnosed with MS in the last year), and I dont feel like spending my time making everyone else feel better.
I feel like I am struggling not to be depressed, or I am depressed but dont have time to be or... i dont really know.
Did you have dark periods? How do/did you get through them? How do you find support?
I feel like life is getting tougher, our savings are running out, she is getting bigger and stronger and thats making it harder to look after her when she wont co-operate (teeth brushing, hair, baths). Its like having a really huge heavy baby and I feel ashamed when I feel she looks a bit grubby cos I gave up washing her face or I cant do her nails or ears properly.
I am scared I cant manage this and I cant seem to find any solutions to anything and its getting worse
Can you share your experiences with me?

Hi Firsttimer7259 just wanted to say sorry your struggling at the moment. Would you perhaps consider seeing you GP who may be able to prescribe you some Anti Depressants even for a short time to help you cope more (i have never taken though i know a lot of people who have and i think they can help). You are entitled to feel down it is a lot to take in when you find out your child has any disability, i think its like a grieving process you have to go through. For me i found some days easier than others, and tried to take one day at a time and not think too much into the future (though easier said than done). You are going through a lot given that your dh also been dx with MS in last year to. You will manage, and cope though some days will be easier than others. Do you have any family or close friends who you can talk to or who can maybe help with your dd at times. I have found this mn site the best thing ever for help and support so keep posting and reading here it will make you realise you are not alone. My ds is 11 has GDD, severe autism, low muscle tone, pica. He also not been well for few months been in hospital a few times in last few weeks and now the docs think he has epilepsy and neurological movement disorder, so im finding hard at the mo though trying to stay positive for me i always think its hard but always someone out there worse off. Hope you have an ok day today , big hugs x

Oh fristtimer I think the pre-school years are the hardest. I have a nearly 13 year old severely autistic son (non-verbal). When he was 2 him now is what I dreaded happening. I was so scared he would end up exactly like he is (!) It made me feel sick to think about it and I fought hard against it. And as you have mentioned everyone else glossed over it with a 'he'll be fine'. Well I was living in Reality FM and he's most definitely not fine according to the definition of fine then, but in actual fact what I hadn't predicted is that despite his disability his life is good and (even more surprising) our life is good.

I remember someone saying to me when he was about 8 that I didn't know the future so I shouldn't spend my time worrying about it. That I might think I knew what was in store for him, but I didn't. That was good advice - he has done very well, in ways that I would never have predicted. And our life is calm and good in a way I didn't think would be possible in the early years.

The early years are hard because you don't know where you're heading - but I can promise you that whatever happens your life will get easier and will definitely get a lot easier emotionally. If you want to see a snapshot of life in the Jimjams household have a look at my blog (link on my profile page) - I hope it shows that the worst case scenario (well mine) is actually fine if it happens.

And grubbyness doesn't matter - honestly.

You're in a slightly difficult age group in that in pre-school years support services don't really kick in. We finally managed to get SS involved when ds1 was 5 and they started providing a good service to him when he was about 9. If you are struggling do seek out what's available in your area (if you get portage it would be worth asking the portage worker) as outside support can make all the difference. Also seek out people in the same situation, a quick phone chat with someone living the same sort of life as you can really help xx

Thanks for this, its good to hear from people with older children. I feel like the future I didnt even know I had in my mind has been wiped out and I have this huge blank space. On that point I loved your blog saintly thank you for posting it. Its comforting to see your life and think ok, it could be ok, even if it is like this, we could all be ok.

I feel like I dont recognise myself nowadays. Before having DD I would never have thought that I would be at all concerned about grubbiness. Relaxed is more generally my style. But with her so behind I feel so keenly that people might think its because I am not bothered...
I know I need to gte help somehow but my family are impossible and everything else seems so slow...

saintly thank you for the blog, seriously. Am looking through it and my panic that sits around behind me even when I seem perfectly calm is going down a bit

Family can take ages to catch up. I was the bad guy for many years - seen as being 'too negative' and 'holding him back' when actually I was just being realistic. They did get there eventually though. I was lucky enough to make a friend when ds1 was 2 or 3 who had a daughter who was similar. We spoke on the phone nearly every day and I think she was a great person just to offload to. And it worked because she offloaded on me every day as well. She 'got it' - we still talk several times a week ten years later. :)

I do wish I had spent less time worrying when ds1 was little. I don't know if you saw the surfing page on the blog - but that one little thing has changed his life dramatically. And it's something I would never have thought he was capable of (in fact it took me a year to take him as I said there was no way he'd do it). His life is even more than OK (and ours too), it's good, and when he was little I really didn't think that was a possibility unless we sorted him out iykwim. Yes therapies were important to an extent, but actually just finding stuff he could access was more important. We did have many failures - but eventually stumbled into surfing and now we all have that.

His language and understanding has developed in ways I didn't think it ever would as well. I never imagined I'd be able to reason with him at all, but it did come. Along with things like eating properly etc etc. It's a slower journey, but eventually you find there are some good sides to it as well as the difficult bits.

Glad it's helping Firsttimer - hopefully the videos show that ds1 still is severely disabled - so you can get a sense that his life is good despite his level of disability (and most of his contemporaries that I knew when he was younger have done a lot better than him in terms of speech and language etc). Do look at the surfing videos - (link to the page from the menu bar at the top), as when he's out and about with the surfers he really is living life. We go most weeks :)

Saintly I was being weirdly reticent about the ok, your life looks really good! The surfing vid did something to my heart. Made it just click back to what I know somewhere under all this panic that all I want is life to be good like that. To tap her into something that links her to life and contentment. I love that video.

There's another one on the surfing page - shot in a warm August bank holiday.
It is contentment. But until surfing ds1 really wouldn't engage in much at all. He would horse ride, for about 10 minutes and he was often happy to go for a moor walk (often enjoyed them) but pretty much everything else was difficult or impossible. Don't get me wrong, things were going okay anyway and we were chugging along fairly happily (and things were much better than they had been in the pre-school years - really you are in the toughest time at the moment), but then completely to my surprise surfing clicked and things just became great. Hang on in there! DS1 has found his thing, ds2 (10) has as well I think, in the last few months (acting) and ds3 hasn't yet - (ds2 and ds3 are NT) - it makes a difference to every child to connect with something, and it takes them all a while to find it. I just never realised it was a possibility for ds1 iykwim.

saintly i had a look at your blog too and have to say it gives me so much hope for my ds future, he has just turned 11. I would love a talker too, how did you get it? ds is using pecs at school, though not doing that well so far (did speak to you on another thread about ds not being very well at mo). The video had me in tears, had to watch twice what a lovely handsome boy your ds is. I hope some day my ds who also has severe autism also finds something that he really enjoys.... gives me so much hope. Sorry for hi-jack OP.

A mystery (anonymous) mumsnetter funded the talker!!! We had a trial first and ds1 took to it in a way he hasn't really with any other communication aids. If you click on the About page and the LAMP page (there's a little menu bar just below the photo of Ds1 lying on the board) there's some more information. Charities and local authorities will also fund but it tends to take a long time to process.

Hi Firsttimer

I'm at work (having a sneaky peak at MN) so just a quick post from me. My DD has severe GDD although luckily, like your DC no health issues, happy temperament etc. I have been, and sometimes still am in the same mental place as you and eventually, after some counselling, decided to take ADs. These take the edge off how I feel and enable me to function better and be more proactive for DD - they don't take away the sadness and grief I sometimes feel (DD just turned 4) - but somehow it's more manageable. I too find the future so scary and have to mentally switch my brain off when thoughts wander too far in that direction .

I have no idea if the following will be of relevance to you or you may already be doing this but:

When DD was 2 she was attending a daycare nursery because I worked 3 days a week. We applied for Statutory Assessment and contacted the County Ed Psych team directly. We got her Statement through when she was 2 yrs 9 months. This gives her 15 hours a week 1:1 support. It's really helped us to feel like she can get the most from attending her nursery and to feel we're proactively helping and this in turn has helped me mentally. This may be of no relevance to you but could be if your daughter attends a setting or you hope for her to attend pre-school post age 3 (my DD attends both MS and specialist settings).

In my desire to be quick, I hope I haven't said the wrong thing or glossed over how you feel - I've been there and it's horrible - but with the combination of ADs and taking some control of some practical things, I have been able to feel a bit better.

All the very best...

Thanks messmonster you arent ignoring my feelings you are helping. This is useful. I think I need more input form professionals so I can feel everything is being done to get the best from her. I also will see my GP. You and shezian are right, I need to find ways of managing my feelings so i dont drown.