How does having a child with special needs affect your family???

[blossomgoodwill]

I hope you don't mind me asking but I just wondered to what extent having a child with sn impacts on you as a family.
My dd is 5 and has a language disorder and adhd/add. I just find that we are unable to do all of the spontaneous things that people with nt children can do. We can't take dd to the pictures as she wouldn't be able to sit still or be quiet for such a long time. We can't take her to watch ds play football, for a long shopping trip. Everything has to be military, even gp appointments (which I hate with a passion). I always have to phone up beforehand and remind them that she has an attention problem so can't wait. Any booked appointments I try and make the first appointment of the day as we are less likely to have to wait. I then have to make sure I take a whole bag full of food, drink and anything else to keep dd amused.
We haven't dared risk a holiday abroad as the thought just sends me into a cold sweat but have decided to give it a try next year
Sometimes I just wish we could just say right we are going to pizza hut and not have to worry about how dd will be. Am I being selfish feeling this way? Obviously it isn't dd's fault at all but I also feel she misses out on so much and it's not fair.

well as we have three kids and they all have autism we dont know any different, if you know what i mean, its become our ordinary, dunno how we would manage with a typical child! we just try things and keep on trying things, we have just been to lanzarote and that was the fifth holiday abroad, i dont think we are brave, probably just mad, go for the holiday.

I think because dd is still very young (2) and doesn't (yet) hve too many behavioural problems, tbh, we can pretty much cart her along anywhere and she is fine.

Having said that, we are limited in some ways. For e.g she has just been invited to a 4 yr olds birthday party but its at a leisure centre (soft play etc) and as she can't even crawl, there really is no point in her going as she won't be able to join in. We also can't go anywhere for lunch/dinner without me having to pre-plan and pack food for dd as she is GF/DF. And we always have to make sure we are home by 7ish so she can have her medication.

But, I guess we are less limited than many.

BH- I don't think you are being selfish at all. It is natural to want to do those family things. I don't know enough about your dd or her condition to give any advice but I do feel for you.

How spooky! I was just talking about this today with one of ds's classroom assistants. All the things you said are true of our family too. The subject came up because ds has been offered a place on a residential course next summer. My first reaction was to say no as I feel he is too young (he will only just be 5) but balanced against that is the chance for his sister to enjoy a few treats with us. She loves her little brother but never gets the chance to go to the pictures with BOTH her parents, or go to Pizza hut without the whole thing revolving around him.

Also agree about holidays. The last time we went abroad was when I was 6 weeks pregnant with ds. The thought of waiting hours at an airport and then taking him on a plane doesn't bear thinking about!

My DD has a tracheostomy which means outings are often spoilt by people staring or asking annoying questions! I always make sure I do everything with my DD that I would with any child but a lot of the time there is a feeling of stress behind each outing as I do find it difficult to deal with others staring. Also if we go on holiday we need to take so much equipment that so far we have only managed three day breaks! I don't think you are selfish at all to wish to go out without worrying as that is what most people take for granted and I know I would love to go out with my DD without half a ton of equipment and no one paying us any attention!!

We're not taking ds1 on any more holidays for the moment. (Unless someone gives us 33 grand for a 6 berth campervan ) There's not point. He just screams, won't eat, we can't go anywhere except for walks and hallf of them he won't do. Mum has offered to have him for a week during school term next year so we can take ds2 and number 3 off to a lodge holiday about 20 miles away from home (then any disasters we can get home and also can bring ds1 for the day).

TBH I dn't think ds1 misses out- he doesn't want to do any of thiis stuff- but ds2 does. A couple of months ago mum and dad had ds1 for the day and we took ds2 out. I realised that he'd never been to the beach properly, he'd never had an ice cream out and about (didn't even know whether he liked it), he'd hardly ever been to cafes etc. We're going to have more days out like that- I do think its important for ds2.

DS1's disability affects everything. If I have him and another child with me we are housebound, as he requires full time 1:1 outside the home to be safe. Makes school holidays fun. (not).

It's the little things that seem to have the most effect on us. If we go into town together, for example, I can't just decide to go into X or Y shop on the spur of the moment. Ds1 will only tolerate going into town if we always stick to the same shops in exactly the same order. If the shop next door to our usual shop is having a sale, for example, I can't just take ds1 in there. On a good day I might get away with it with some advance preparation.

We don't eat out anywhere. Ds1 has only a limited range of foods that he will eat so tends not to eat when we're out and about. He will have a carton of juice to drink but that's about it tbh. His behaviour is actually okay while he's drinking but then he tends to get up and either run off or just run around the room.

We haven't been on holiday since our honeymoon - a year before ds1 was born. We also don't go to the cinema as the noise in there would be way too loud for ds1 and ds2.

OTOH there are also a few advantages to it all at the moment. We can walk through toy shops and not have to listen to any "I want thaaaaat!" whining. Once ds1 knows what the rules are in a given situation he can actually be far better behaved than a lot of NT children of his own age. The tough part is actually teaching him those rules each time.

As both boys have SN we don't have to worry about complaints that one boy gets special treatment. So far we haven't encountered any jealousy either although obviously we do still try to make sure they are treated fairly.

Just realised I may have implied that dd complains about her brother getting special treatment. In fact she is amazingly patient and forgiving with him and I am very proud of her. It's me that worries she's missing out.

Had to laugh at the toyshop thing Coppertop as the one and only time ds pointed at something in a toyshop window I went straight in and bought it as I was so chuffed!

I must admit that I find it really hard having one of each. Our oldest R is nearly 11 and he is NT. J is 9 in March and he is our little Freddie Fiddle Fingers. Nothing in this house is sacred - it all belongs to J. This obviously causes huge problems in the house.

Poor R saved really hard to buy a new game for the PS2 and within a day J had wrecked it. We have tried everything from buying a metal box with a lock to hide R's precious things - J always finds the key - to putting a lock on R's bedroom door - J kicked the door clean off it's hinges!!!!

I really feel for R because he can't have his mates round to hang out after school without J causing a complete stink. R now goes to a local SibLink group - which is a youth group for siblings of ASD kids - he loves going there because he knows everyone in the group understands how life is having a younger brother or sister who is so demanding.

I have started to learn that the floor is J's shelf and anything left on it disappears as it now belongs to J!!!Bit annoying at times when I am trying to find something and realise it was my own fault for not picking it up of the floor. J is a Magpie, anything left where it shouldn't be vanishes - just wish he would give me back my wedding ring - I left it on the side in the bathroom two years ago - searched the house high and low - he can't remember where he put it!!!!!

Just wish sometimes we could go off and do normal things like a trip to the cinema as a family - impossible for all of us to go - J just screams throughout the whole film asking for it to be rewound to his favourite parts!!!!

We went out to the pub for a meal last night - and whilst he was generally OK - I still spent half the night avioding the horrid stares when J started throwing a wobbler because his chips where touching!!!!

Afeter all said and done though I wouldn't change him for the world - he is my little angel.

I guess it is early days for us - but I think the thing that we do differently of course is all the therapy and medical appts. Generally we are able to do anything else we want.... However now we have dd2 - not sure how different things will be... have tried to maintain dd1's routine as much as I can - playgroup etc so she does not miss out. Just can't wait to be able to drive and carry dd1 again ( bloody caesar!)

We have taken her on two o/s holidays - brought her out to aus to meet family when she was about 8 months old, and then to singapore on our way back to Aus.

She does not do shopping I guess - gets bored easily so I could not just wander and window shop - you know... without her trying to grab everything and anything off the shelf. That could just be normal toddler behaviour.. as someone else said though - don;t have to worry about her asking for things (yet) and getting stroppy when she can't have them.

Not sure if this will change when no2 gets older.... no doubt it will have some impact on her.

Hi!

Well it effects us heaps...main one being a real catch 22 situation...that being me and hubby cannot go shopping together unless we take the boys...which takes so much planning etc that we don't bother- and if we do we end up giving up as the boys cannot cope- though since they have all now got gameboys....we do manage short outings to B&Q and MFI!!!!!
The flip side is that we then end up taking turns to go out to town...bit like one comes in the other goes out...meanwhile the boys are in their pyjamas all day!!!!!
Also i have to lie alot to leigh...he copes better if a plan gets cancelled due to something out of my control than when i change my mind etc...the latest was when Tom had been on a school trip to london...and i told the other 2 that when we collected him from the coach that we would go to mc donalds....then as it happened when i got there Tom was travel sick and got very stressy when i suggestd T at McD's.... so i told Leigh that i'd just overgheard someone moaning that McD's had ran out of Chips,nuggets and fruit shoots! So...i reckon in our house i tell more white lies than in a NT home!!!

Mrs F, my DH and I are like those weather clocks- one's going in, one's going out, like you and Mr F! My life is very like Jimjams in that I can't physically go anywhere with both children therefore housebound if I haven't got help (although I have just passed my driving test and i'm hoping this may make me braver). It used to be easier when DD was smaller. Blossom, we haven't been on holiday since DD was five months old. You are SO brave, onlyjoking! We are thinking of going next year, but only if we can afford to pay for DD's therapist to come with us (may get through link). It's not so difficult as DS still very small but, like you, Pixel, I know there's going to come a day when he wants to do 'stuff' and I don't want him to be resentful of DD. But you kind of get on with it, don't you? There's a family across the road with two NT kids the same age as mine (with the same names, spooky...) and I sometimes find myself staring out of the window at them as they go on yet another trip out (they go somewhere every weekend, after nursery etc). Jealous, moi?

I find not being able to do things with my older kids is the worst followed closely by never having any money because it has all been spent on things for ds2 that should have been provided with him.
It is ds1 (10) Christmas concert next week and he is Joseph I can't go and watch him because it is at 7.30pm and dh will be working every night until christmas eve.There is no way I could take 3 kids out on my own at that time.
I feel as if I am always missing out on stuff as there is no one else to have ds2 and he would never sit still and be quiet.
This is the second thing I have missed this month and I feel so guilty and sad for my eldest.

meea, that's really hard. My dd doesn't get in until 8pm at the earliest every night so I know what you mean about being so limited. DS has a great childminder who's so supportive but it obviously costs money. I do have weeks where I feel as if I'm really missing out.

tbh apart from therapy, appointments, 24 hr supervison, never ahd a nights sleep, find it difficult to get out and about, cant shop, cant go anywhere with stairs, people staring when she whines, self harming distraction techniques and the like., our life is pretty much normal:o

and the emotional impact of tests and genetic counselling etc on your family and your relationship with your spouse in general is just awful. Too awful for words:(