Do you ever find it hard to stay positive?

[insanityscratching]

I'm struggling a bit at present. Ds is being a PITA and I'm just feeling tired of it all I think probably because I can't see when it will ever end. He's seventeen now and some days are just as difficult if not worse than when he was three and the prospect of God knows how many more years of it is exhausting. Dd is doing brilliantly and yet I know that it's all fragile and I keep waiting for the bubble to burst and the next round of battles to begin. Oh I don't know maybe I need to wallow a while or maybe I need a kick up the bum. What keeps you feeling positive?

Would be great to hear what keeps others positive. Dd1's diagnosis still really new. Just as I think we're all doing really well re acceptance, loads of appts, facing applications for nursery, we'll have an awful day like yesterday when all dd seems to do is screech, whine and cry. I ended up going to my bedroom to cry, wondering why my child had to have autism instead of someone else's . Not a nice way to think but I was wallowing in self-pity. People were about to arrive for a BBQ too!

One of the hardest things for me yesterday was realising that other people have no idea what it's like to parent a child with additional needs, or the effect on everyday life that this has. I have to keep reminding myself that before dd I probably would have been just as clueless .

just now i know a wee girl who is 8 and has leukemia, so when times are tough (most times...) i try and think to myself,
well, at least he's not ill.
what a nightmare that would be.

but nonetheless, its still hard, hard, hard. you dont need a kick up the bum. youve been doing this a lot longer than me (ds is only 6). you need someone to tell you how well youve done all these years! you need . think how much money youve saved the state! (IMO some people need to be reminded how much it would cost for a person with a disability to be looked after).
and finally you need someone to give you a big glass of !

seaweed, i wonder that too! why my child?

i just cant help it.

i need !!!

Your DS is 17, I think you deserve a medal for getting this far and caring so much. We only got a dx last year and DS is only 3 so are new to this but it's people like yourself on this board who makes me stay positive..

DGS has CP and is 3.7. Sometimes it is incredibly hard to stay positive, especially now when all the 3yo are running round the park The endless hard work for just a tiny breakthrough, some days it seems we get nowhere.

Thats when I think ffs he was born practically dead. He could be underground now or so badly damaged his life might be unbearable to him. Instead he laughs like a drain at Wall-E, loves books, is making slow but steady progress and everyone who meets him is charmed by his curls and smiles! He may never walk unaided, or speak clearly but the thought of what might have been is what gets us through another day of physio exercises!

Whenever people in our position ask 'why me', and compare our children we look at the shiny happy families with healthy children, we dont look at the struggling poverty stricken parents, the abused wives and children, parents struggling with drug and alcohol problems and their disadvantaged children. They are out there too, and invisible like us, so maybe our lives are not so bad? We are all doing a great job and we'll do it til we drop!

I have a whole bottle of !!!

I have had a few down days with Dd3 lately and I am ashamed to say that I haven't been very patient with her.

I used to get like this with Dd1 when I knew very little about ASD but I know I shouldn't now because I know her awkwardness is nearly always her ASD not her just being a pain.

She has been getting lots of input at school lately but is not able to put it into practice and wont let me help her, I think that is why I am frustrated.

She is lovely and happy most of the time but she has ASD and sometimes that takes over.

Anyway whether we need, wine, chocolate or a kick up the bum at least we can do it together on here where it is safe and we all get it.

Am off to bed, so i can cope with tomorrow, she is supposed to be having a transition visit to her new Guides but is currently refusng to go

Be kind to yourselves

I think I struggle more with the system. That is what brings me down and refuses to let me sleep. That is what I find so horribly hard to accept and that is what makes me feel sick to my stomach.

With DS he has always been DS and even though I got DX only a month ago DS has been with us for nearly 7 years as his amazing self.

What keeps me positive is refusing to think of the future as its not here yet. When it arrives we will deal with it. I only deal with one day at a time because everyday has different expectations so I dont even think about tomorrow iyswim.

What also makes me positive is that although the days can be challenging, DS can be a pain both because of SNs and also because he can be an imp not using SN as an excuse :) But when I am with him and even though the day has been hard if at the end of the day I get the "sort of" lean hug with his head on my arm and he says "today was the best day ever mum" I know that somehow we at least are getting it right.

I didn't know you had a poorly dd either zzzzz. DS1 was born at 24 weeks and was on life support for the first three weeks of his life and needed oxygen for a year and a half so I know the feeling about almost loosing dc. We do consider us lucky that he is here but hard not to feel deflated by the dx after his initial struggles in life. I still remember what you told me when I first posted about having high hopes for our dc and that is what we intend to do... Doesn't stop it being bloody hard work though.

I think I struggle more with the system
That's how I felt too when ds was still in school. I could cope with HIM even though he was very challenging, but 'the system' was definitely making our lives worse by creating problems that needn't be there and not addressing the ones that were.

A couple of years ago I found out once and for all that there were NO services or supports that ds could access in this area, and that even if there were, they weren't available to home educated children. I can't describe the relief I felt, knowing that I could finally say to naysayers that they couldn't provide any better for him than we were. On the one hand, it's tough being on your own but on the other we don't have to answer to anyone and can just get on with giving him what he needs - as a result he is thriving.

We've had a few ups and down since then but overall things are positive for us. Most of the hard stuff was with 'the system' and it's good to be free of it.

Yes, yes to all of it.

I have periods of absolute despair and exhaustion with it all. Strangely, when the system denies us something or isnt working in DS's favour, I seem to be pretty good at giving them one hell of a fight and my mood is more upbeat (if a little bit manic ) as a result.

But there are times, certainly, when I feel isolated and depressed.

Things that help me are:

• Focusing on what I cando about the situation. If I am keeping busy and focusing on taking small steps towards improving things for DS, I tend to feel better. At the moment I am working on my contribution to his Annual Review and this is definitely keeping the self-pity at bay

• Having a break now and then. I am lucky that I have a supportive DH and Mum who will give me time off now and then. I think every parent of a child with SN needs regular breaks, and it is terrible that so many parents never get this. My local council fund short breaks (usually just a day trip or a holiday scheme) and support workers for children with SN, which is a Godsend.

• Sharing my problems with, or even just being in the company of, other parents of children with SN. Mumsnet is brilliant for this, and I have been attending an after school club for children with ASC for the past year, which has become a brilliant support network.

• Its a cliche, but reminding myself that it coud be worse. I have friends wit children who are far more profoundly disabled than DS, and aI also work with Looked After children, and DS has it much, much better than these children. There but for the Grace of God go I etc.

Waffling away on MN is brilliant, too, isnt it?

Yesterday morning, I was trying to read the papers online while DD usually watches tv at that time on Sundays - but DH usually reads papers online and I get a chance to sleep, yesterday he was gone out in a boat to get his sea-legs. So DD didn't want ME to read things - could I please find Jedward and their Eurovision song for her. I found it, and she ended up sitting on the table and leaning on to my shoulder to watch it snuggled up. That is soo rare, it was lovely - and then she went off to watch Tracey Beaker and think for hours about the girl falling off the roof and how she was really hurt too and get into a discussion with me on safety precautions and stage makeup rather than real blood.

She got her dx 2 months ago, which we'd been seeking for almost 2 years. Everyone says we're great to be going and getting it, and so positive about it all - and mostly we are just trying to make sure she achieves her potential - but there are days when it feels really really hard, and I just want to stop the train and jump off for a week on my own.

No dealing with DH's stressful job and international travel. No dealing with my stressful job. No dealing with organising a teenager in the house (au pair) and constantly thinking about arranging the next one. No making sure I finish work on time and deal with rushour traffic to get to creche on time and not incur (another) late infringement. Not keeping the house clean and managing the household (paying bills, making sure we all have clean clothes that fit, organising diaries, buying cards/presents for all needs, planning ahead for holidays, writing all the letters to get whatever DD needs etc). No time or energy for the gym and only eating rubbish at the desk. No time for my gardening or crafting, or even reading. Getting constantly criticised for not "keeping in touch" with the rest of the family. Feeling so exhausted myself, or DH is, that we hardly manage any "us" time in between his travels.

But then I pick myself up again, remember the (8th?) Guide Law ("A guide smiles and sings under all difficulties" - I can never remember the rest) and start off again on the next job to be done.