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Feeling sad about party

(16 Posts)

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theDudesmummy Sun 02-Nov-14 13:20:55

Sorry this is a little long...It's just one of those days, when you realise that trying to get DS (age 5, ASD) to fit in with NT children is getting more and more distressing. DH took him to a party today (6th birthday) and came back early, very upset, saying he is not taking him to any more parties. Of course all the other kids were playing and having fun with each other, and DS just wanted to spend the whole time opening and closing the door and paying no attention to anything else. The difference just gets more pronounced as we go on.

It all just feels so sad, and DH was so upset he also cancelled a playdate we had booked this afternoon. He said that he just could not stand going to someone's house and sitting there watching DS constantly opening and closing their doors and oven and fridge and cupboards, and ignoring everything else. We try so hard to feel like and just be ordinary people as far as we possibly can, but the disability is starting to open up such a gap between DS and his peers. He looks looked at more in the street now too, because it is obvious that he is big enough to be expected to be talking. And he doesn't, he just makes funny noises. I am not embarrassed exactly, and anyone who doesn't like it can get stuffed, but it does make you feel different.

It also makes me realise, with impending dread, that the plan we have now (mainstream school with one to one part time, and home ABA programme part time) is only going to go so far and he is probably not going to be able to get anything much from mainstream school at some point in the future. At which point the huge fight will begin to get him into an ABA school (Treehouse, which happens to be two minutes' walk from our house). The LEA are going to oppose at every turn and try to send him to their own special school, which does not use ABA and which would set him back hugely. I have no doubt it will all mean going back to a Tribunal at some point and all the stress and expense of that.

No answers expected, just feeling sad....

2boysnamedR Sun 02-Nov-14 13:30:49

Days like this are so sad. Last one u had was when dd was born. All the other two year olds was asking mummy about the new baby. Ds was running around not a clue what was going on while my sister asked him to stop acting like 'a re**rd'. It sucks. Best to shut out the world for a while

autumnsmum Sun 02-Nov-14 17:15:38

Maybe that isn't the right word to use here ?

Needingsomeadvice Sun 02-Nov-14 17:23:50

I think 2boys was just quoting?

autumnsmum Sun 02-Nov-14 17:27:51

Sorry misread the comment I've asked for my comment to be deleted

IonaMumsnet (MNHQ) Sun 02-Nov-14 17:28:36

Hi folks, just a note to let you know we have edited a couple of posts on this thread to remove the 'R' word. We know it was used in reporting an incident and not intended to offended here, but we just think it's such an offensive term, it's best avoided where possible, particularly on the special needs board where it might unintentionally upset someone just happening across it. Hope you understand.
OP - sorry for crashing your thread and sorry to hear about your day. Hope things become easier for your family somehow as time goes on and you manage to get the education that's best for your DS. Best of luck.

2boysnamedR Sun 02-Nov-14 17:39:21

Oops sorry I was quoting my sisters exact words about my son. I know it's extremely offensive. I shouldn't have quoted her. I was so upset I didn't even call her out on it. I doubt she even realised it might upset me as my kids behaviour is just something to laugh at to some.

2boysnamedR Sun 02-Nov-14 17:43:36

I think the main thing that helps me is to get really upset, have a cry then put things behind me as you can stew away and forget to enjoy their childhood. That's something I'm totally guilty of. Some things I just avoid as well as I know it will make me stew, hard to avoid every situation that they stick out in thou. I cried watching my older son doing his gymnastics for the first few sessions but now he makes me really proud. Just because he is the worse by far, but he sticks it out.

theDudesmummy Sun 02-Nov-14 18:25:45

2boys I didn't take offence, but of course I can see it's a sensitive issue for some. I work in a field where I hear derogatory words about people with mental health issues all the time, and while it's upsetting it is also important to remember that people do use these terms (and think in these ways), so that we can "know our enemy" so to speak (not calling your sister the enemy, but the societal attitudes and expressions).

Anyway thanks for the support! I sometimes get taken by surprise at how upset I get. Most of the time I am able to give myself and everyone around me the impression that I am swimming alone just fine, whereas under the water the goose's feet are scrabbling away madly....

StarlightMcKenzie Sun 02-Nov-14 18:34:38

So sorry to hear of your day OP. Is there any way you and DH can organise a date night to regroup?

I have days like yours but also days when I realise I have vastly underestimated ds or just not thought of something that can and does make things more successful.

The realisation that you have another battle on your hands and for a placement you wish your child didn't need is indeed a big deal though and you need to look after yourself and each other.

theDudesmummy Sun 02-Nov-14 18:45:45

No date night! I have tons of work to finish and DH is dealing with DS having a huge meltdown at this moment (using all the best ABA principles)! The battles of the future are some way off, we have an arrangement that is holding for now, but I can just see the gap widening and widening between DS and his peers, and it is disheartening and sometimes a bit heartbreaking.

Firstnamelastname Sun 02-Nov-14 20:18:48

Agree - it is really hard when these sorts of things happen
My DH took it really badly recently when we had something similar, and reacted in a similar way
Just posting to let you know that you are not alone

reader108 Sun 02-Nov-14 20:57:55

Again just sending support and understanding.
My Ds once spent 5 hours playing with automatic airport doors!!!
I tried everything to disract him re ocupy him without sucess, in the end I joined him for a while, and we discussed why it was SUCH fun!
Then left him to it love him.
We got loads of 'looks' all ignored. One lady offered advice which upset my Dd. I very politely told her where to put her advice.

theDudesmummy Mon 03-Nov-14 12:00:59

Thanks for the support. WTF is it about blasted doors? With my DS it is automatic doors first, but if there is none of those around any door will do. I sometimes wish we were Bedouins in the middle of the desert. There seems to be no place in my life I can go where there is no door! Even outside places have visitor's centres, cafes, toilets, and they all have DOORS.

mumsuz Mon 03-Nov-14 15:48:19

Also just offering support and understanding - the whole difference between our dcs and peers, coupled with party attendance always makes me sad too. But as Starlight says, then there are times when you can see some progress or that something has got a little better or just when you are able to accept them and all their quirks. (I'm not saying that you dont accept, but I for one am often overly desperate for my DD to fit in).

Are there some places and playgroups where you can take ds and be with other children where he won't be so different?

2boysnamedR Mon 03-Nov-14 19:57:56

Luckily my ds has a fear of automatic doors after one nearly decapatated him.

It really is hard to stand back and see progress when we are all so close. It has taken years to pass to see my ds is in fact making progress.

The toddler on the other hand - I said to his portage teacher - he isnt. making progress is he? She just looked sad. :0(

If you write a list of things he is struggling with a put it away for six months you would see progress. I think I'm guilty of expecting too much. Waiting for ds to be "adverage joe" but it's not going to happen. But he has the possibility of blending in at some point, have to remind myself I don't see any adults walking on tip toes and eating only yogurts with their fingers. He will always be what he is, but with the right help I have to hope he can live a normalish life

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