Coping With Special Needs Stress! Sorry- long moan

[JAKBROWN]

I'm new to Mumsnet but having read through some of the conversations on the special needs board it seems there is a really great group of experienced mums here. I've got a little girl who's nearly 4 with SN and a little boy and I feel as if I'm going completely mad at the moment. For the year after diagnosis, I seemed to cope well. So busy getting things in place for dd who is now doing home therapy I didn't have time to get 'depressed'. But recently I find myself feeling down (which isn't very me- usually annoyingly upbeat!). Just feels like everything is too much. Feel as if I can't do enough for my daughter, then stress of making sure my son gets enough attention, fretting about it all all the time. House if full of people constantly- specialist nurse, therapists etc. House a wreck- haven't even changed the lampshades since we moved in as been so busy drowing in special needs stuff. Husband at work all the time- career going really well and feel as if he is generally disengaged from family and SN daughter. Also feel irrationally angry at parents without SN kids who 'complain' about things like their child not being as advanced as another etc etc. Am turning in to a misery. Is this normal? Will I come out the other side?!!!!! Sorry to moan on...

I know that my ds2 really isn't too bad in general and I don't have to cope with half as much as many of you but the low point of my week is Tumbletots. We were advised to go to improve ds2's co-ordination, balance etc because he has some motor problems. He has to go in the group below his age range so we are surrounded by potty trained two year olds climbing over everything with skill while we struggle with much of the apparatus. Plus he finds it really hard to sit still for the songs and instructions and spends a lot of the time doing circuits of the room while everyone else's darlings sit nicely listening and answering the questions.

And to cap it all someone has always asked me by the end of the session how old he is.

Oh god saker you don't d tumbletots do you? Everyone I know with SN kids who has done it has said it was the most depressing experience of their lives (I went to one session of microsports and came out in tears- sat in the car sobbing rang dh at work and told dh he had to sort it out so that I didn'thave to go back as I wouldn't be able to talk to the teacher without bursting into tears- it was dreadful!). if you hate it- stop going and don't feel guilty. There are other ways of improving coordination without exposing yourself to that each week.

Yes I think we will stop. ds2 could go to preschool instead and he is really enjoying that. It is just the guilt thing because it is one of the few things we were actually advised to do. But you are right there are other things we could do instead.

yes but your mental health is important as well. Honestly don't put yourself through it.

Something you could look into is whether your local leisure centre runs a toddler gym. I used to take ds1- and it was great- completely unstructured- just loads of equipment out. They had a very short 5 minutes sing song/organised stuff at the end, but it never really mattered that he was off doing his own thing 98% of the time. Much much much better than something like tumbletots which is too depressing! The people who tell you to do this stuff don't realise how awful it is!

We tried a few things - monkey music worked well as ds1 went from age 6 months so knew the routine- pretty much everything else stopped working (eg aquatots etc) when it became too depressing I just stopped. I did feel guilty at the time but looking back it was the right decision. Those environments were not right for him anyway.

I considered taking dd to tumbletots, but they were full. Also I would have had to go with the younger age group which really defeated the main reason for taking her-so that she could mix with NT children of her own age.
I used to describe her motor skills group like a mixture between the Grand National & Bambi, all the little kiddies going round & round the obstacle course, with dd running round with her little hyper flexed legs!!Ah bless her.Sometimes you have to laugh.

Hi, I'm also new to Mumsnet and wondered whether there are any mums with a child with Williams Syndrome. I am also a lone parent and so didn't know which discussion to go to first! (I had a look at the loners but can identify much more with you lot.)

My daughter's five and I have also gone through/am going through the ups and downs of emotional turmoil.

Sorry not to know anything much about Williams syndrome, but no doubt you will find out more on a new thread - hope so..
Agree so much with all the ups and downs - I get so worked up about meetings, and end up absolutely horrible for a few days after, even if it has gone well. And the worry/guilt about giving enough to your SN children, and balancing that with the others (and for a lot of us work as well) - I think it's a bit of a lose lose (lose) situation, but suppose someone in management might have a more upbeat description? You just have to try and remind yourself of the good bits all the time, just like positive behaviour with the children. I have taken to noticing 'bottling moments' - when everyone is happy (doesn't happen very often ), and taking a mental picture for myself to refer back to when things get bleak.
And Tumbletots? Our dd1 (who is NT) completely failed to fit in there at 18 months and I left in a huff, I thought they were FAR too prescriptive and judgemental of children and mothers who didn't toe the line. (Dh used to have a good laugh at the video though - all those bouncing wholesome people! ) Our younger two are at Gymini now, which seems more free and easy.
Mumsnet is such a valuable sounding board - sometimes wonder if dh would have expired with boredom and frustration by now if I hadn't found somewhere else to vent, and learn from others' experiences.

daramum - I am sure a friend of mine who has a dd with down syndrome also has a child with william's syndrome. Will ask her to be sure and then pass on her contact details for you - she is supportive and very helpful.

Dingle - I used to find the cdc frustrating - can't believe what we have access to over here and how much dd has come on....for a little while after she started therapy here I felt a little bitter - like we had wasted almost 2 years going to cdc because although I could see some improvement in dd I felt like I wasn't doing enough for her nor was I giuven enough guidance on what to do for her.

JAKBROWN - all of the things you describe are normal - we have all felt like that at some point in time and still do... I get frustrated when I see children younger than my dd walking and talking - makes me feel very sad... especially as she seems to have so much to say - just don;t know what it is she is saying. As others have said - it is good to meet parents in the same situation as you.... they are receptive to a moan and feeling down and often can really appreciate where you are coming from.....

Dear all, really helped to know it's normal to feel like this! Have dd's statement review in a few weeks so probably subconsciously stressed about that, too.

Am definitely going to: 1) Book appointment with GP re: counselling
2) Buy Heat religiously every week
3) Sign up for next meeting of local support group (not been yet)
4) Do evening course (been thinking about that, actually, did yoga course where nobody even knew I was a mum, let alone a 'super' one! Felt good. Need to do that again).
5) Get dh to do PECS course and come to next ABA workshop (he's always got 'work' on).

Thanks SO much. Have action plan.

ps Saker- God, amazing braving tumbletots. Have braved toddler groups in past but dd stole everybody's chocolate crossiants and then then next thing I knew she was swigging somebody's milk! Then she bounded through somebody's carefully constructed train set. Found it awful having to explain- at that time it was vague 'global developmental delay'.

pps Daramum- I know two mums with a child with Williams syndrome. Will dig out their contact details for you. I'm new to mumsnet, too. Already found it invaluable.

for the last 3 months i have really been on a low- and feel guilty that i rarely feel able to offer help to others- as you are all so good to me.

this is not a 'sympathy' vote request- just an apology.

love especialy to coppertop who i haven't emailed for months...chocol8...who has the ADHD-AS-Medicated-mainstream cocktail like i do.....and Davros The Laminator xxx

Hi Jakbrown and daramum - welcome to mumsnet.

I haven't been posting on here that long, probably about 4 months but it has been soo helpful for me. I resisted the 'sn world' for ages, didn't want to join local support groups etc (not that I have actually been able to find any!) but chatting to people on here has strangely given me confidence in RL and I am now building up a good network of friends and contacts. I have realised that however fantastic other friends can be, it is only really other parents of children with sn who truly understand.

At the moment I think I am feeling generally okay (apart from the odd drunk meltdown) but there was a point about eight months ago when I actually kind of wanted to have a real proper breakdown - just so that people would stop saying how well I was coping etc and realise how hard it was for me. Because I might have been coping day to day but inside I was a complete mess. I found it hard to tell people that because, well, a) I've never been very good at asking for help and b) it somehow felt disloyal to dd.

Anyway, I can feel I am going to ramble here, so I'll stop. Just wanted to say welcome and no, you are totally not alone in your feelings, and like others have said, I think most of us go through it.

Heartinthecountry, thanks for your support . I know what you mean about feeling as if you're going to have a total breakdown. A little bit of me feels as if I am going to totally lose it and sit in a darkened room for six months. But then can't as dd, in particular, needs me. Much better that I have discovered mumsnet!

I'm another newbie; I only discovered mumsnet last week, and this is my first post. I'm relieved that others feel like this (depression, anxiety, difficulties with meetings), as I felt it was just me. I'd go along with what others say - go and see your doctor, try and get out and do things you enjoy, try and keep working if at all possible.

I'm angry that we should feel this way, and that the "professionals" we have to deal with (the LEA and the school in my case, as ds1 has a chronic illness that has badly affected his education) don't recognize it. One "professional", just one, in three years, has shown any concern about how I'm coping.

Thanks for the encouragement to quit Tumbletots - I think it is just what I need. I'm sure I can find alternatives - even an hour in the local soft play would probably be as good. In fact when you take out all the talking in Tumbletots we are probably only on the equipment for about 20min.

One good thing that came out of it is that it stimulated ds2 to express some feelings - he said to me after the last session "I don't like Tumbletots"!

And just when I thought things couldn't get any worse...........................Ds1, ds2 and lucky old me have all come down with bl**dy chickenpox! Ds1 is more distraught at the idea of his routine being disrupted. We'll also be pretty much housebound for the rest of the week and with no help whatsoever.

And to top it all off, ds1's breathing is sounding wheezey but I can't tell if it's due to his stuffy nose or his asthma.

AAAAAAARRRRRRRRRRGGGGGGGHHHHHHHHH!

I feel slightly better for having that rant though.

Don't worry about it, MrsF. Just let me know if there's anything I can do to help. xxx

Welcome to mn mfh

Poor you CT . Get well soon, all of you.

Really sorry you have to go through that Coppertop - it is absolutely what you don't need. Only slightly consoling thing I can think of to say is that at least you have got it all together rather than one after another extending the quarantine period even more.

Hi mfh - welcome too .

Oh poor you Coppertop. Absolute nightmare. Thinking of you and hoping for a speedy recovery

what a pain in the arse CT - hope you all feel better soon.

lou, hope you're feeling better. GO and have a good moderate somewhere, whatever you do, don't go to the Poetry Club So much on here I agree with and can identify with. MrsF, I had noticed that you'd been quiet for a while and have been posting a bit more recently. Half the time I think we all "cope" so well as the alternative is not an option, plus I don't have the full meltdown with DH if I can help it as I don't want to drag him down. I had a couple of terrible weeks, just getting through it now, all to do with change (school moved). I am going to see my GP but ask for the one who happens to be an old friend who has a son with ASD who is a few years older than DS, I feel I need to find out a little about what's to come, not too much though! I'm going to an NAS conference next week about "Extreme Behaviours in ASD", if I find out anything marvellous I'll let you all know and I'll see if I can copy any papers for anyone who wants them.
Anyway, had a great Crechendo with (prob NT) DD this morning and I normally hate it! Little sod's woken up after only an hour though and thwarted my plan to watch the Doris Day film on ITV

Conference sounds really interesting. Be great to hear about it.

DH said to me this morning, 'why does DD cry every morning for her milk when she knows she is going to get it?'. !!!????

Explained DD has no way of communicating her needs to us apart from crying at the moment and that DS (NT) cried but then moved on to shouting and then 'talking' from his cot in the morning. She's probably thinking, 'get a move on with my milk, I'm desperate for it'.

Anyway. DH is constantly asking me what the future holds for DD. How far is it advisable to go down that route?

ps Anybody got a child at Treehouse school?

Cannot stay off mumsnet and have a deadline

I think I will just follow you about Davros, make sure you are behaving yourself, getting your punctuation right etc

Think messages would make a very good and very inspirational book for parents of SN kids one day