Sometimes having a SN child is just rubbish

[MooMummyMoo]

A self indulgent moan really. Just fed up. I know I should find the whole situation fulfilling and I should be telling people how much my wonderful SN DD teaches me everyday etc etc. but frankly, sometimes it's just rubbish and I hate it.

Earlier I left my DD with a book to look through - one of her favourites. When I came back she has shredded (and eaten a fair bit) of one page. This isn't hugely unusual but I find massively annoying. I shout, she just laughs, I get more angry.

She then later pulls her sisters hair. Also not uncommon but I am still simmering from before.

And now she is sat in a baby's bib (aged 4) as she is sitting spitting/dribbling and won't stop.

I hate days like this. I know all children can get to you at times but for some reason the SN element makes it all the more harder to deal with.

As I say, I am just moaning, but I need to let off steam somewhere and here is the only place I can do it.

Moomummymoo hugs if it's any consolation
Dd2 is four and we've had banana thrown around the room and dd has just tried to empty the baby wipes , it's also sweltering in lindon

That does help thank you Autumnsmum! It's nice to know it isn't just me.

Currently sticking tiny fragments of pages back together to see if I can save the book. Oh well, it'll be another 'tut' and a look from the in-laws when they see it and think my DD just shouldn't be allowed to actually touch any books...

Ho hum

Any time moomummymoo it's lovely to see you ! I've still got play doh ingrained in the floor boards as well ! The family blame me for dd2 being in nappies etc

Why should you find having a child with SN fulfilling and a prized education?

I don't.

I'm trying to make the most of my life like everyone else here. I try and savour the joys for the many miseries. Sometimes I even pull if off but a good percentage of the time I'm just faking it.

There probably isn't a minute of my life that I don't wish was different, that it could be different. That is not disloyal to my ds. It is just the way it is. If you separate the love thing, he's a huge pita that I wasn't expecting in my life and could frankly do without because quite honestly without him, life is still bloody hard enough.

He HAS taught me things. And I AM a better person for having him. And I feel that my experience of having him has helped others and that is great for Karma and everything. But so what? Where was my choice? Where is my freedom? Where is my money? Where are my friends, my hobbies, my pension, my great marriage, my qualifications, my career, my life?

Starlight, thank you so much for your honesty. I could have written what you wrote! I only hear people say they wouldn't change their child, and for me it makes no sense, I would change her if I could. I really would, in a heartbeat. I love her but I do not love her chromosome disorder and the impact it has on her and on us.

Thank you so much for being honest and brave enough to say it. It really helps to know I am not the only one feeling like it.

What Star said.

I don't think we should be made to feel that having a child with SNs is some sort of amazingly life-fulfilling experience. For the vast majority of us it's bloody hard work and more thankless than it is some sort of wonderful enlightening learning process.

I hesitate when people say, "I wouldn't change him/her for the world" because I don't know how I'd untangle the ds I love from the parts that make our (and I'm including him in that) life really hard a lot of the time.

I wouldn't be without him, I do love him immeasurably, but if someone told me today that they could take away all the things that make his life so hard and consequently have such a negative effect on our family, whilst leaving his loving nature and sassy sense of humour etc, retaining the essence of who he is, but removing the 'disorder', for want of a better word, I would almost definitely say yes.

It's taken a while for me to accept that's how I feel. I have wrestled with it over the years and been made to feel bad for thinking it - but you know what - it doesn't mean I don't love him, it simply means that I want more for him and for us and I finally think it's ok to occasionally stamp my feet and complain that yes, it is unfair and I have times when I am monumentally pissed off at the relentlessness of it all.

Whichever you need, along with a big old slab of your favourite chocolate.

Moose I feel exactly the same , having two Dcs on the spectrum makes me feel like a wrung out dishcloth a lot of the time

autumn, you have just described perfectly how I am feeling this evening.

Dh has been instructed not to return from the VW camper's garage unless he has copious amounts of chocolate with him and I'm supposed to be on a diet - again.

Choc is needed , I feel like a particularly grubby stretched dishcloth in a greasy spoon and that's before a trip on Friday with ds in 90 heat

Feel exactly the same as most posters said.

Had a good cry yesterday.

Totally agree with all above love him unconditional but he's HARD HARD work would change things for him in a heart beat if possible. The next person who says but he does so well is going to get both barrels. Yes he does, but at the expense of my daughter, my friends, my life sorry what life!

So therapeutic to read this thread tonight. Have been here crying as lost my temper with DD (who is not the child on the spectrum although pretty convinced she has AS/PDA) as it has been relentless today with her refusing to do the tiniest of things while my son (ASD) is screaming as I couldn't find his toy in a millisecond !
Tried to fit in visit to farm, home schooling DS, playing, entertaining, cooking, cleaning, tidying all with tonsilitis.
Then DP comes home and has 20 mins of what I have had all day and goes back on his promise from 2 days ago of 'trying harder' , tried to be the disciplinarian which fails spectacularly, gets in a sulk, says I let them do anything they want, etc, etc. I get angry, take it out on DD, (did have a good chat after) but now lying here feeling guilty as hell for getting so angry with her!!!
Sorry for going on about my stuff but was tempted to post myself tonight( although I rarely do) as feel like I have nowhere to offload.
Tried telling my mum on the phone, in mid sentence she says 'anyway' and starts talking about something else! Oh well.

Well this week at the end of my tether with ds and approx. 4 weeks of utter crap from him, I actually said to my dh that ds was hard to love sometimes. My logical mind is knows he can't help it and i know the triggers, but its too much sometimes. I must have sounded deranged to my neighbours this week. Then came the guilt of how I could say such a thing or think it.
It's hard, and I envy those people who would never take away their dc's dx because otherwise they would be their dc. I hope one day I reach that kind of acceptance.

Thanks for this thread

bath books.

almost indestructible. can get quite a few stories if you hunt round...

my NT (so far) child used to destroy books.

I know I am supposed to... setence made me want to do violence to something... it just does not work like that... 90% of the time..

Thanks everyone for replying. It really helps to know that I am not the only one that thinks like I do sometimes. I shall start afresh today and just see how we get on. Onwards and upwards! (hopefully...!)

Frusso I agree so much about the lack of sleep , and having to hide things

It is hard and yes I would take away my ds's difficulties in a flash. I hate it when people saw that it takes a special person to parent a child with sn. I'm not special and neither is he, we're just who we are and struggle away sometimes quietly, other times not so quietly.
I need the cry sometimes just to keep going. and the chocolate.

Hatty I agree so much about the special parent saying I'm a totally average parent , I know it sounds silly but I would love to have a vase of flowers out , it's a tiny, tiny thing but there's no way it can happen

I'd like to take a day trip without having engage my psychic ability to foresee all potential problems and work out what I need to either prevent it or deal with it quickly.

Hope everyone is having a better day.

Put the stick up his nose, ram them up there..... Nice and wide those magnum sticks
HTH

Holy Knickers! Sorry!
That last post was not meant for this thread . Nor am I advising anyone to ram magnum sticks up their dc's noses!

I was in fact responding to another thread whereby the OP was asking should she leave her dh because he left the freezer open, and melted her box of magnum icecream. I (quite rightly) have advised torture.

I have reported myself - I'm off, to jump into the hole I've just dug for myself.

Frizz that's put a huge smile on my face thanks