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Because I don't FUCKING WANT TO -alright !?!

(23 Posts)
originalusernamefail Fri 12-May-17 21:57:04

I'm going to apologise in advance for the rant coming this way, but I just don't want to anymore I'm afraid. I'm the parent of a non-verbal 3.7 year old DS who has autism, and I'm typing this on a short break from a tearful, snotty, tantrum of my own. I'm really struggling, on the outside I'm positive, get things done, what will be will be, on the inside I'm a raging, frightened toddler myself;

I don't want to worry about where my son will go to school,
I don't want to worry about what will happen to him once I'm dead,
I don't want to accept he may never call me mummy or tell me about his day,
I don't want to hold him down and force him to take melatonin just so he'll sleep,
I don't want to face his keyworker with another form to sign that he's pushed someone,
I don't want to hear that it'll be alright because what the fuck does anyone else know,
I don't want to hear Einstein didn't speak til he was 4,6,8, 102 - what difference does that make?
I don't want my 'parental voice and preference' to be the only thing considered, I want advice and guidance from people with decades of experience in child development.
I don't want to hear half-termly reviews are the only SALT he's entitled to.
I don't want the guilt I feel when I think that people have it 1000x worse.

Aaaaaannnd deep breathe. There are many other things but tears are welling again. Please hand me a grip - and some big girl pants.

user1477054316 Fri 12-May-17 22:08:25

You can do this, you know why? Because your little boy needs you. You are doing great; you care. That's what jumps out at me when reading your post. I'm also a mum to two autistic children and understand the drain on you physically, mentally and emotionally. All I will say is things really do improve with time. Your boy is still young, therefore you'll still be finding your feet with this diagnosis which has been sprung upon you. If at all possible, make sure you allow yourself time for you. Even if it's a book and a glass of wine when your sons asleep. Lots of love x

Onceuponatime21 Fri 12-May-17 22:13:19

I don't know what to say that doesn't sound trite, but just wanted to let you know that I read your post and found it really moving. I hope you have someone in RL to talk to about you, so that - as important as your DS is - you get the support you need too. If you're not supported, you can't support him.

LauderSyme Fri 12-May-17 22:19:40

OP I am so sorry you are feeling like this. It sounds very hard and totally exhausting, and it is understandable that you have - temporarily - reached your limit. It is okay that right now you feel like you do not want this to be your life. It is emotionally draining.
I am sorry I don't have any proper practical advice to offer.
You don't need any big girl pants, you wear them very well pretty much all the time; you're allowed to take them off and wail and howl at the moon sometimes.
Have a hug and some flowers and cake (or wine if preferable) xx

PossibiliTea Fri 12-May-17 22:24:42

Doesn't matter if people have it worse- this is what YOU are dealing with flowers

JennyOnAPlate Fri 12-May-17 22:25:42

No big girl pants from me. Tonight you cry/rant/rage, tomorrow you get your big girl pants on.

You will be ok.

tadjennyp Fri 12-May-17 22:31:44

Also the mother of an autistic son here. It is hard and it is draining and you are in a safe space to rant and let it all out. Sometimes that is exactly what you need to do. cake flowers gin

Zampa Fri 12-May-17 22:35:27

OP - I'm in similar (but not the same) situation as you although DD is only 2 this month.

All I can offer is a big hug and some sympathy and understanding. I wallow in it on occasions and it's a big release. It's allowed and it's normal.

Take some comfort from all the things that you're able to do for your little boy. Get some rest and brace yourself for a new day.

Good luck for the future.

mineofuselessinformation Fri 12-May-17 22:35:39

I have one child who is not NT, also with a severe and potentially life-threatening disease, and another who has a significant disability, all of which diagnosed long ago.
I've tried very hard to come to terms with all of this.
Years down the line, I still have down days where I think why them and why me.
I think you're entitled to be angry and upset here and there. It's a very difficult road to travel.
Give yourself a break and allow yourself to feel how you feel.
flowers for you.

originalusernamefail Fri 12-May-17 22:37:54

Thank you everybody for being so kind. Still crying, but happy tears. Luckily DS is at my dads tonight as I'm working tomorrow and his little brother sleeps like a trouper. I seem to 'high' points where I feel that we'll get through anything and then I get slapped down by a big old dose of reality 😄. His DLA letter came through today at the end of a shitty week when we've all been ill. It just makes it seem more 'official' to me. I've met a lot of fantastic ladies and gents on the same road as me since our diagnosis and am in awe of how they keep it together and just seem to know things. I aspire to be like them when I grow up.

mineofuselessinformation Fri 12-May-17 22:45:31

A couple of things...
Applying for any kind of help is bound to make you feel down, as it focusses on the negative.
Secondly, remember that for your child, that is their 'normal'. I'm not trying to patronise you (DC2 is registered blind)...
I'm just trying to say that children are amazing and adaptable.
Yes, you will want to help them through and for them to have a good, fulfilling life. Of course you do.
But try to remember, you are doing all you can to help them.
That is enough.

mineofuselessinformation Fri 12-May-17 22:46:18

And P.S.:
Yes, take what time you can to have some time out - it's important.

LauderSyme Fri 12-May-17 22:52:20

I bet those parents on the same road as you think exactly the same about you!
Reality fucking sucks sometimes.
Glad you're feeling a little less overwhelmed now.

mineof flowers for you too

ouryve Fri 12-May-17 22:59:08

You don't want my big girl pants. Just Ewwwwww!!!!!!!!!!!!1

have you been over to the SN boards, btw? OK, they're a bit light on the non-verbal stuff, but still full of people just looking out for each other.

I'm on the verge of sending non-verbal until 8 DS2 to secondary and finally feeling like I can breathe on the school front. A brilliant state secondary for DS2 and DS1 is long established in a brilliant indie specialist school - and just as I begin to worry that they'll put up their hands and say sorry, we can't do this any more, they remind us how brilliant they are. DS2's seconary placement is also a gateway to some much needed respite - fo DS1 from DS2, oddly enough!

I might finally be able to get my ground to bits teeth fixed and develop some healthier evening drinking habits.

originalusernamefail Fri 12-May-17 23:03:54

Thank you all again. Just knowing I'm not the only one to occasionally throw a wobbler is very reassuring. I actually work in healthcare and in a roundabout way I feel I am better at my job now I've been swept away by the information tsunami myself. To head off to bed on a lighter note, browsing instagram I've found a place that tattoos sound waves that you can play back with your phone. If I am ever lucky enough to get a 'mummy' or 'love you' ( he does 'tell' me that already by letting me smell his comfort cats manky tail grin). Then those little words are going on me somewhere. Night night all thanks for all the winebrewcake, I'll send you all back some ginenjoy!

originalusernamefail Fri 12-May-17 23:06:20

Thank you Ouryve. I've been a bit of a lurker on the SN boards but never felt quite ready to jump in. I will give it a try though.

ChipInTheSugar Fri 12-May-17 23:15:41

How does he take his melatonin? We use strawberry flavoured chewy "sweets" (5mg) from Biovea which may be more palatable?

originalusernamefail Fri 12-May-17 23:24:08

He can only take the liquid form. He doesn't eat sweets (doesn't get it from me!) and any attempt to 'doctor' accepted food was rumbled and thoroughly rejected. We went through a period of a few months where he would only eat yoghurt that had been taken from the fridge and opened in front of him after I tried adding a flavourless multivitamin. We had a little more success with milk as that is his absolute favourite but he would never take the full dose and it wasn't effective. We tend to squirt it in at the end of teeth brushing as he's not a fan of that either and we get it all over with at once. I wish he understood bribery grin

mineofuselessinformation Fri 12-May-17 23:30:02

Thank you, Lauder.
original, it seems to me you are doing everything you can. Keep looking forward - it's all you can do. flowers

paddypants13 Sat 13-May-17 11:23:48

Op, I have no experience in this area so I can't give any useful advice. I just wanted to say it's ok to have a rage, a cry and feel sorry for yourself sometimes. I get like that and I'm not dealing with anything like the difficulties you're facing. I wish the best for you and your ds and I hope you get the support you need and deserve. x

TheWorldHasGoneToCake Sat 13-May-17 17:47:41

I have no advice or experience but just wanted to send you a hug, cake and brew or gin depending on preference. Have you got anyone in real life to lean on? Parents/friends/his dad?

EggysMom Sat 13-May-17 21:42:09

Mum of a 7yo non-verbal ASD/SLD/deaf son ...

I don't want to do any of that either.

But I do it anyway. As do you. Because we have to. star

planetclom Sun 14-May-17 01:12:41

Mum of thankfully verbal twins with autism, they are 12 now and I totally sympathise, my two both have ADHD and they never bloody shut up or sleep, I am currently having my ear chewed off by one of them about a storm trouper outfit he wants for the bargain price of £111!
I got away with dissolving melatonin in hot chocolate for bloody months until Thursday when one bastard didn't melt and I got busted, hence he is still up at 1. I will go back to it as it doesn't taste and he got comfort from the routine.
It's shit and every stage is another load of shit but it is also learning more and getting small victories. Join a parents group or start one, having friends in the same boat helps no end.

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