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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

so depressed today

19 replies

yogabonkers · 31/07/2011 10:19

just had a crying fit thinking about all the things we cant do with our other 2 nt kids because their 5 year old brother has autism.

also other parents (ie all the aunties and uncles that provide no help at all) have absolutely no idea what its like.

i dont usually expect help from them because they're all my husbands brothers and sisters, but i think i feel particularly bad today because my eldest nt son was 7 yesterday and not one of them came to see him for his birthday. they have no idea how difficult it is for us to go to them with our asd son as well. they dont want to know.

they think its a huge deal taking one day out of their usual weekend fun things. if only they had to live their lives around a small, disabled child every day.

anyway, thanks for listening to me rant guys! i feel a wee bit better now!

OP posts:

IndigoBell · 31/07/2011 10:25

Sorry to hear you're feeling down.

It is hard.

If you can have a cup of tea or a bar of chocolate or a tub of ice cream or a hot bath or 10 mins with a book or anything for you for 10 minutes.......

EllenJaneisnotmyname · 31/07/2011 11:19

I do look enviously at other families doing normal things together, like going on a bike ride, or going to the park. We just do a lot separately, DH takes the NT two and I stay with DS2 (11 ASD), or vice versa. Also we go out all together but come home separately. We try things and persevere with DS2. He'll go to a restaurant now so long as they have burgers and the service is really quick! He'll sit through a cartoon film at the cinema so long as there is lots of popcorn. But when he was younger I did feel like a hermit. My 'd'sis had no patience with him and seemed to imply it was our parenting that was at fault. If you can, try to find a local SN support group where people truly understand. We have one locally that does trips out in the summer holidays and some sibling only activities. It does get better, but you do have to work at it.

BakeliteBelle · 31/07/2011 11:56

I do hear your pain, yoga DS is 15 and we get a good respite package, but what you say about the whole family being so 'disabled' by one child's disability has always been the saddest aspect of parenting a disabled child for me. DS's challenging behaviour has been a really major barrier to an ordinary life and a major barrier to being with other people.

We do what Ellen does and separate. It's crap but it stops the siblings suffering as much and actually gives DS1 the 1:1 he needs. We have to agree times for swapping over, as it is so intense with DS1. I have also been immensely helped by an SN group, just for the support we give each other and the gallows humour we have at our situation - very, very cathartic. Respite has been a must - without it we would not have survived as a family.

If I had my time again, I would have insisted that DH and I split up (on paper) and had two different places to live. It sounds crazy but staying together has not worked in our favour. However, we have managed it and now DS has a better respite package, we feel we are out of the tunnel and looking at the sunshine again

mariamagdalena · 31/07/2011 14:48

for your 7 year old. And on behalf of the ignorant in laws.

Is it that they don't want to be around / make an effort to compensate for a child with extra needs? Or even to admit that someone might be having a hard time while they swan about, because that would mean feeling obliged or, even worse, actually doing something inconvenient. Maybe they're embarrassed by their good fortune as they see it? Or feel unskilled and inadequate next to the special needs superparents. And there's always old fashioned fear and stigma, the 'disability might be catching' phobia.

sometimes not very useful relatives can still be morally blackmailed into incorporating a NT sibling into some of their fun stuff.

coff33pot · 31/07/2011 23:49

I hope you feel better now yoga

Been in similar situ with my inlaws but then they totally left ds behind from a baby due to favouritism of my DD. Now they come and visit for the last 12 months because DH has told them he poss has AS. They come for 15/20 mins to look at him with a pity look that pisses me off and talk to him like he is slow or hard of hearing and to tell you the truth I wish they carried on not bothering. They dont do anything constructive but to sit there with tea and gawk then go.

DS really doesnt care either way as he isnt big on feelings and to be honest I was more upset and worried of the unfairness and got worked up more than he did.

If your family cant be bothered then dont bother them you are better off without. xxxx

drivemecrazy63 · 01/08/2011 14:40

im in complete agreement and as were all in same boat feeling a total FAIL as ds say's atm holiday time makes it worse as we see all my dd and ds1s friends going on holiday out for day ect ect a simple bike ride or walk nothings easy and weve no relatives nearby no close relatives now my mums died so no1 to give respite and no sympathy even which just a chat and cuppa would be nice, when you talk to other people about it you can tell they dont understand and do think its shit parenting skills eventhough ds is ASD and at SS they still hear him swear or scream or flap about or wont sit still and they look straight at me MUM never his dad they blame me , im feeling useless and sad too (((hugs))) have a and a

drivemecrazy63 · 01/08/2011 14:45

they should do very cheap / or qualify for free holidays to somewhere like haven in a campsite for kids with SEN so we could all for cheap as chips get together with like minded mums and dads with no hangups or problems with kids shouting or screamig or meldowns where we wouldnt be made to stick out and be frowned upon where our kids and us can be ourselves for at least a weekend ow that sounds like heaven to me.

coff33pot · 01/08/2011 18:24

THAT does sound like heaven!

I have never actually gone on holiday to be honest. Went away for two weeks when my eldest was 9 and that was 12 yrs ago now lol. A weekend away would be amazing anywhere

EllenJaneisnotmyname · 01/08/2011 18:27

coff33pot. You deserve a weekend. Can you go without OH and DC?

coff33pot · 01/08/2011 18:57

Noooo not really Ellen because we got a little shop to run which means DH or I are normally out at 5am. If I go then no one would be in the house hence DH wouldnt be able to work or open up and close and there is no way we could afford to go away and employ someone as we only did this to be able have one of us home for the DCs at all times. DS cant cope with the masses of ppl this time of year so he cant to to the shop as sit with his Dad as its too much. We dont go together away because I got 5 cats and dog at home as well as DS & DD (my little zoo! )

To be honest where I live I am lucky as we live by the sea and I probably wouldnt see nicer beaches anywhere else. But the holiday weekend away that driveme just mentioned sounds tempting with the kids and leave DH at home

EllenJaneisnotmyname · 01/08/2011 19:24

What a complicated life! At least you have the sea on your doorstep. A holiday with the kids but not my DH sounds too much like hard work!

coff33pot · 01/08/2011 19:40

Oh I dont know that would mean one kid less

My DD is 10 so she is at a sensible age and a bit of a mini mother!, it is only DS that is SN so should DS meltdown she knows to stay clear and leave me too it and she can amuse herself and make friends anywhere. The only snag would be the travel and cases etc. hmmmmmmmm I am thinking now.....

Original poster

yogabonkers · 01/08/2011 21:19

thanks you guys. i do feel better today, have had lots of tea and choc hob nobs, and is so nice to hear from you all. and me and eldest son did something together this morning which was good.

drivemecrazy, am in such a similar position. we dont have relatives close by (its a 1/2 hour boat journey, but to them its like going to the moon!) and my mum died 2 years ago from a long illness, just as we realised ds2 had autism. she was only 60 and was the best granny and would have done so much for us if she'd been here. its so bloody not fair. although sometimes in my more rational moments i try and think that its all relative, and at least we're not being bombed, or having extreme weather. omg, imagine that with an asd kid.

OP posts:

coff33pot · 01/08/2011 21:30

OMG! Extreme weather!!! ........noooooooooo it doesnt bear thinking about! The last gale of wind had mine in the dogs bed with the dog (was puppy at time) DS convinced it was going to creep inside and blow the dog away. In the end had to place the dog bed in his bed WITH DS and dog in it and a quilt over the top

Glad you are feeling better :) xx

drivemecrazy63 · 02/08/2011 16:59

im sahm coff33pot dh is also disabled and ive two teens i did take all 3 dcs and dh on holiday to disneyland back in 2002 my last holiday but that was when DS3 ASD, Dyspraxia was 2 yo so was easier then ,NOW ive 3 ragdoll cats ,a norwegian forest ,a tortie moggie, a king charlie and a maltese and two hamsters and a fish (no emoticon for idiot ?) im not going anywhere am i for quite a few years too many kids and pets i must be totally crazy one of those good idea bad ideas.

drivemecrazy63 · 02/08/2011 17:01

DS3 likes storms , i guess its cos i love them i love watching them so all 3 dcs have coppied me but he would freak out if outside in one that would be a nightmare

coff33pot · 03/08/2011 02:42

I thought I was the only crazy one to have a zoo Ragdolls are beautiful cats my sister has one and he is gorgeous.

All my cats are rescue moggies and each have there own issues bless them so they fit in well with us The pup who is 12months now was bought for DS and it was the best thing ever for him. Oh and we have a rabbit too. Amazingly enough no one has tried to eat anyone yet!

My DH said he had a nightmare once that there was a long row of animals with dishes infront of them and he was at the end with his bowl. I guess he was hinting he was the last to get fed in the house

But you mentioning a holiday has got me thinking. I think I will wait till my DS is finally sorted hopefully with his statement and then see what dx the psych gives. (they still havent employed one yet grrrrrr) THAT is the time I am going to need to get away to get my head straight and I reckon DS and I deserve a break away then.

drivemecrazy63 · 03/08/2011 10:11

aww mine are rescues too one i brought my first raggie but all the other cats are from rspca or from the ragdoll rescue used to have a rescue rabit but he kept biting the kids so had him rehomes bless the kids were scared of him in the end we did lose the hamster when cage bar came out when we were staying with a relative and neighbour came in to feed the cats (took dogs with me) but a week later after appeasing DS3 with a new hammy the old one apeared from behind the cupboard she had made a home back there with dog biscuits and shredded paper with our tortie who brings home live food daily god knows how she didnt get eaten so heres me running round trying to find somewhere to put this hamster as cant go in together at 9 at night now ive two of the bloomin things.hope you get your well deserved break we have friends in manchester so our break is to stay with them and go into blackpool with the kids not really a rest as DS3 is a bit of a nightmare away from home, but at least its uk and we can get the things he wants to eat if we went say malta or france what would DS do without asda i dont know as he wont accept different brands and certain foods wouldnt be available it doesnt bare thinking about , let us know if you get a few days away is that the ed psych your waiting on?

coff33pot · 03/08/2011 22:57

I am sorry but I am really laughing at the hamster situation

No EP has seen him. And another EP is seeing him again as they have agreed to do SA. Its camhs thats the prob. All ppl he has seen including pead have pointed probable AS but they have to finish off with a child psychologist that does the dx side of things. They havent got one soooo we are waiting........waiting....

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