Jump to content
mum22boys

Feel sad...

Recommended Posts

Feeling fed up that we don't live a conventional 'normal' life...if there is such a thing! :blink:

 

Went out today to chose M a new carpet. He has been prepared for weeks that his room is being decorated and that a new carpet is needed but it was still hard. He was so stressed in the shop he went into hypo mode and then got under the carpets screaming that he wanted a carpet that was no way going to go in his new room. Eventually we got his agreement and quickly paid and left the shop.

 

After he hurt his leg on the slide in the playground and I wanted to go back in a shop so hubby said lets do it after the playground. M was screaming all the way to the shop, everyone was looking at us. Then hubby says' you know we can't do normal things so i don't know why we try' So I end up going to the shop by myself whilst he gets the kids back to the car.

 

The point was....I forgot. I have these moments where I think we can just go to the shops and it will all be ok. But it never is. I feel like I want to live a 'normal' life and do things that others take for granted without M getting stressed.

 

At the moment we are stressed because we are taking him on a plane on Wednesday. Are we mad :huh:

 

Do any of you ever feel fed up that you can't do what others do and that it takes so much planning. I feel exhausted all the time. I want to just get in the car and go somewhere without all the explaining and visual calendars etc.

 

I sound selfish I know but why is it so hard?? :crying:

 

mum22boys

Share this post


Link to post
Share on other sites

Oh yes, I always long to have normal shopping trips with my Son. Reality is, that I or hubby, goes shopping alone most of the time. When we do go as a family it is usually a commando style mission, where we are in and out of the shop before L can throw a strop. I would also like to go for a meal in a restaurant and not have to get take aways or avoid eating out. I too forget sometimes, usually when we go somewhere that I haven't been to for a while or there are new shops. I think 'I would like to look in those shops' and hubby will sometimes say okay, and sometimes he will remind how much of a nightmare it will be if we do go in.

I sit and lament the lack of normalcy quite frequently - but I don't see any change on the horizon, so just have to get on as best I can. I am with you on this one :crying:

 

KW

Share this post


Link to post
Share on other sites

I don't take Bill on those kind of shopping trips.... years of what you have described made me realise it's just not worth it! I do though take him on very carefully planned trips to the super market for him to help me do the shopping! He's allowed to make his own list of things that he has to find on the shelf and he helps to pack the shopping at the end. He then helps me unload the car when we get home. I think it's important not to avoid these situations but it's equally important that they know exactly what's going to happen. It may have been that your son didn't expect the extra shop trip that he kicked off.... especially as he'd found the carpet buying stressful. Pour you and hubby a large glass of wine and take a deep breath >:D<<'>

 

Lauren

Edited by Flora

Share this post


Link to post
Share on other sites

yes it is very frustrating! I'm kinda hoping it gets easier with time? :unsure:

 

As for the plane, do you have melatonin or a pead who can prescibe it? I know a friend of mine used it on a flight to florida or her son would not have coped!

 

Anna x

Share this post


Link to post
Share on other sites

we let our child use a gameboy and it keeps him content for a long time. We check in our bags and go straight to departures where we sit in a quiet area so he can play his game. We have been going to the same house in Spain for many years because he knows where everything is. All the houses are in a horse shoe shape with the garden and swimming pool in the middle. There are only a few children there so our child does not get too distressed. They even have his favourite television programmes.

 

Jen

Share this post


Link to post
Share on other sites

Hi

 

I know exactly how you feel. I have moments when I forget and am soon reminded. For my son's 4th birthday last December I wanted to do something but still keep it low key. We invited 2 of his nursery 'friends' and I hired a fire engine. We went for a ride in the fire engine for an hour and then had some party snacks. Robert likes fire engines but I could see he was uncomfortable. He was unable to play with the hats and hoses, etc. Hubby was quick to say 'see I told you so". Point is, I don't think it was distasterious ? it could have been a lot worse. Whilst he wasn't totally at ease, there's was no meltdown, etc (at least until we got home!). I guess what I'm saying is, if you don't try, you don't know. If it doesn't work out, don't do it again. That's my philosophy. I have found that writing a short social story helps massively. Robert actually takes notice and studies the pictures closely, even if it is stick people (far from a work of art!). Robert has had big problems in shoe shops because he hates anyone touching his feet. It's usually a 45 minute visit and I've had to prevent him from hitting a shop assistant. It was a nightmare. On the next occasion, I wrote him a social story and he was perfectly angelic! Not saying it's going to work miracles, but anything is worth a try, especially if you have a child that has difficulty processing verbal information (much better with visual information).

 

Best wishes.

 

Caroline.

Share this post


Link to post
Share on other sites

Hi 'mum' -

 

Cold comfort in the here and now, I know, but chances are it will get better - either because your son will learn to deal with these situations better or because you'll develop strategies between you for minimising the stresses involved and avoiding their occurence...

One of the best 'top tips' on this came from 'Pookie' many moons ago - if your son is into music, give them a walkman to listen to. First go it worked a treat with my son, and subsequently we replaced the walkman with a gameboy with even better results. Today he took his PSP, and ended up while I went through the checkouts sitting on a chair sharing turns with three other kids he'd just met...

Two or three years ago he'd have wrecked the shop, I'd have been close to tears, and snapping at those well meaning people saying 'I've got one like that at home' or even worse those sanctimonious gonks who just glare without stopping to consider for a minute that there just might be more to what they see than is obvious at first glance... :( (sorry - slipped into 'rant mode' there for a mo :lol::lol::lol: )... What I was trying to say was three years ago I'd never have dreamed, and i was wrong :D:D

 

L&P

 

BD >:D<<'>

Share this post


Link to post
Share on other sites

mum22boys, I feel the same way.

The only time I take the children to the shops is to get them shoes and even then it has to be done quickly. Even things like taking them to the swimming pool or the playground is difficult. At the playground, Kieran rushes round like the Tasmanian Devil, stopping about 2.5 seconds at each thing and having no regard to safety. Conversation with anyone is impossible. At the pool he's either spinning or getting out of/into the water in rapid succession. I love my children dearly, but at times like these, I feel that we really stand out and I wish that we didn't. :(

 

As for holidays, we don't attempt anything stressful anymore. We go to CentreParcs twice a year, every year. Hubby and I would like to do something different, but at the moment it's really not a good idea.

 

(By the way, BD, Jen and Caroline thanks for the ideas about gameboys and social stories, I'll give these a try)

 

Elaine

Share this post


Link to post
Share on other sites

We went shopping today for a new fridge/freezer. Ours went fizzzzzzzz three weeks ago now just as the summer began to hot up :( The insurance FINALLY came through today and Terry was determined that we would not waste a minute and decided that we would have to go and buy one today :unsure: Matthew's friend had just returned from his holidays so he did not want to go :angry: Rob was at Leeds watching the cricket so we had no sitter :tearful: David decided that we would not mind coming with us (two of them together on the same shopping trip :wacko: ) So off we go with Matthew :angry: and David :shame: in Matthew's direction. Me well I was :crying:

 

To begin with it went OKish I knew what I wanted and I wanted a silver fridge/freezer. However Matthew fell in love with the fridge/freezer that has a cold water dispenser and also does crushed ice - David was also in awe of this wonderful machine, which only comes in white and was not really what we wanted, but hell they agreed about something for once :dance:

 

So which fridge/freezer will arrive next Thursday? That's right the white one that dispenses cold water and crushed ice - well you can't win em all and it did avoid a double meltdown. Just as well I :wub: em both. But I do so hate shopping.

 

Oracle

Share this post


Link to post
Share on other sites

Yes - I hate taking Logan shopping so rarely do - but miss it. I hate having to find a babysitter every time I want to pop out for the littlest thing.

 

In saying that, I flew to London on my own with both kids last weekend and they were both brilliant!! Logan was far better than I could have hoped - especially because he hadn't been on a plane for over 12 months.

 

Good luck with your flight.

 

Lynne x

Share this post


Link to post
Share on other sites

I can manage it with my son, he is ok ... but not in places like carpet shops, electrical shops etc ... and you can to a degree understand why, they are pretty dull at the best of times.

 

I remember going shopping with my parents for things like that, I just used to find a space in a corner and lie down until they were done. Memories of my Mum trawling through dresses at the Rackhams sale springs to mind, lordy it was dull for a kid to have to endure.

 

I feel more guilt at letting my other son down (19 months) ... he wants to do everything and can be somewhat limited by whether his brother is having a good or bad day. He needs to live a full life, and I make every effort to let him do what he wants to do, but it can be difficult. I guess that is where we have more troubles with not being a "normal" family. We have had to cut a couple of nice days out short because my oldest son has reacted to the environment that we are in, and it is a real shame that our toddler has to miss out.

Share this post


Link to post
Share on other sites

I forget too :(>:D<<'>

 

Things have improved since M was younger (he's 7 now). He used to freak out completely as soon as i took him anywhere crowded or noisy. We can go to the shops - just has to be like a military operation :blink::rolleyes: . I tell M how many shops - what we need to do in each shop - how long in each shop...... you get the idea. It means i can go if i need to - but i can't go if i just fancy a moochy about :( .

 

Plus - thank goodness for the PSP :notworthy: . Keeps him occupied - i just have to 'steer' him around as he pays no attention to where he's going! :lol:

Share this post


Link to post
Share on other sites
Plus - thank goodness for the PSP :notworthy: . Keeps him occupied - i just have to 'steer' him around as he pays no attention to where he's going! :lol:

 

Matthew carries the DS EVERYWHERE while David is ALWAYS hooked up to his I Pod - can you just imagine what we looked like yesterday in a well known electrical store? Not just what we looked like but how the conversation went in-between pausing the game and listening to the I Pod :wacko:

 

I think that my user name should really be 'wierdo's R US' :lol:

 

Oracle

Edited by oracle

Share this post


Link to post
Share on other sites

I KNOW THE FEELING IT WOULD BE NICE 2 JUST BE ABLE TO DO THINGS WITHOUT ALL THE PREPERATION THEN IT USUALLY GOES PEAR SHAPED REECE GETS STRESSED THEN I GET STRESSED THEN WE END UP GOING HOME DEFLATED AND WITHOUT DOING WHAT WE WANTED 2 TOOK REECE 2 GET SOME PASSPORT PHOTOS DONE TOOK US OVER AN HR TO GET HIM 2 SIT IN THE BOOTH THEN HE KEPT MAKING SILLY FACES IN THE MIRROR LAST ONE NOT 2 BAD GOOD JOB IT WASNT 4 A PASSPORT :lol::lol:

Share this post


Link to post
Share on other sites

Hi

 

Can relate to this thread. My little boy got diagnosed when he was 2.5 yrs old ( he is now 6). I can now look back and see all the things that we can now do with him whereas before it was out of the question. An example of this is sitting down for lunch in a cafe..............

 

I have to agree with Caroline in that you can have a shot at different situations and if it doesn't work out then leave it. My son used to hate swimming pools - he can now go in and have a splash about :wub:

 

Usually when i start comparing myself to other families that is when i start having a hard time.....

 

Forbsay

Share this post


Link to post
Share on other sites

me three! off on hols tomorrow,had 3- 4 days off endless questions,ten yr old BOUNCIN!!! when will be set off, how long at airport, how long on plane, then just gone to sleep, in tears cos we ve farmed out 2 of our 4 pets(1 dog, 3 cats!) Loves animals, bless him

We ll have to remember his cuddly dogs tomoro

Need a valium in preparation for airport (Im wise tho, bought 3 dr who novels, ahhh!)

Im kncakered, its never straight forward with our lovesis it!?

Lisa

Share this post


Link to post
Share on other sites

me and my daughter went of to tkmaxx yesterday, got a lift there by offering to take 6 yr old asd son whilst dad and middley listened to football (? :( )

We put him in the big 3 wheeler buggy we bought off ebay earlier this year and he was fine for about an hour, then started shouting loudly that he'd "had enough of shopping for now, thankyou", bit of a problem when the footie doesn't finish for another hour and it's too far to walk home :wacko:

A big bag of bassets ( no colourings !) sweets kept him happy for a bit longer :pray: but it was all getting a bit too much for him, shame there wasn't a carwash nearby that we could have gone and watched :wub:

Getting to the point now.....

I'd never noticed before how much attention the big buggy attracts, in the past we have shoe-horned him into a normal buggy, although being a bit higher up seems to have stopped him pulling the price tag off every item he passes :whistle:

I think I've got used to the stares, and am now avoiding (mostly !) the temptation to stare back with my own well practised 'Paddington hard stare' :P

His favourite word to shout out right now is 'FISHPOKE' which probably draws more attention :lol: not sure where this came from, suspect elder siblings to be at the bottom of this :shame:

 

wac

Share this post


Link to post
Share on other sites

Oh lord yes. I have to make sure Toms phone is always topped up and fully charged when we go out, cos he invariably wanders off. Mind you he can either be found in Virgin, game, or any other games store playing on the x box or in Asda or WHSmiths looking at magazines.

 

i lost him for an hour once and then found him in waterstones looking at yughio? books - lol. i dont worry though cos he doesnt panic and just stays put till we find him, that was the one time he hadnt got his mobile - never again!!!!!.

 

no-one would take him either cos he would kick them if they tried >:D<<'>

Share this post


Link to post
Share on other sites

Thanks everyone,

 

I knew i wasn't alone in feeling like this but when you don't really see others who have these problems it is hard. All my friends kids are NT. they don't have to prepare like we do. :wacko:

 

On the way back from the shopping trip I told you about, we passed a pub with lots of families sitting in the garden in the sunshine having lunch. For a split second I thought, that would be nice to do....and then I remembered it would be hard work and very stressful. Perhaps not! :(

 

I thought there was some good things mentioned that I will be trying. I will try giving M a list of a few things he can get when we go shopping, something to try to keep his mind on task! Also I think the gameboy will be coming out with us more often.

 

And, waccoe, I can relate to the tags coming off clothes. I can't enter a shop for M pulling the labels off the clothes and wanting to take them all home!

 

Well 2 days til hols. I sent M off to his Special needs playscheme today with a book on airports so he can study it. After the disaster last year i am worried we will get a repeat. But hey, who cares at least he is entertaining!!!!

 

Thanks again

 

mum22boys >:D<<'>

Share this post


Link to post
Share on other sites
he was fine for about an hour, then started shouting loudly that he'd "had enough of shopping for now, thankyou"

 

I can see his point. I think most males of any age (myself included) feel that way after about an hours shopping! Pehaps he's guilty of being too brave/honest? :ph34r:

 

 

Simon

Share this post


Link to post
Share on other sites

Kieran will only want to go to shops where he wants to go.we go town once a fortnight when he gets his money and seeing it is 12 miles away could save a journey by shopping at the same time....NO i am not allowed to look at anyhing or go in any shops i want to go into so i have to make a special journey myself which i may add is less stressfull than arguing with him about where i need to go,when kierans shopping only kierans shopping lol

 

 

 

lynn

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...

×
×
  • Create New...