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ASD then and now...

(15 Posts)
bee169 Sun 28-Aug-11 16:19:49

My ds is 3.5 and has ASD. We have just come from a wedding and I noticed how differently people were responding to ds compared to other children. Many just acted like he wasn't there or gave him weird stares. I feel as if my heart is falling into my stomach. No one knows about his diagnosis but they can clearly see that he is different. Not only because he is not talking but also because he does not respond to people, even waving is too much and he just runs about rather than playing with toys.

Does any one have any experience of this type of thing when their lo was young? If so, does it get better or do ASD differences become more obvious??

dietstartstmoz Sun 28-Aug-11 17:30:55

Hello bee. I.dont have an answer i'm afraid. Our ds is recently 4 and also asd. He is making some progress but it is slow and at his pace. My heart is breaking every day when i see the differences between him and others the same age. I think its a case of getting support where u can, meeting other families with asd kids and avoiding those stressful situations. You need to be gentle with yourself and try and avoid things that will be upsetting. We havent made much effort with several old friends with kids the same age as their kids are not asd and i find it too upsetting seeing 'normal' kids.

TalesOfTheUnexpected Sun 28-Aug-11 18:01:01

bee169 I think as parents we notice the differences more, rather than the people who are watching our children.

Once you know or suspect your child has ASD, you are looking out for every thing. Everybody's interaction, every little difference. Sometimes you can be over-sensitive. Sometimes, you have to just cope with the fact your child is different and some people don't know how to cope with that well.

Adults can respond differently because, although they don't know the ASD thing, they can see your child is different.

Before I had children, I didn't believe autism existed. I thought it was all down to bad parenting.

Christ, I was wrong!

signandsmile Sun 28-Aug-11 18:15:11

my ds (ASD and LD) is nearly 5 and off to school on Thurs (gulp).

He is still different from his peers, and it still hurts at times. ( probably always will.) BUT he makes fab progress, and it gives me such joy, (yes the progress is different but he is still changing and growing and it gives me hope.) hang in there, in my experien ce it has def got better.

MangoMonster Sun 28-Aug-11 19:42:03

I agree with tales...I think we notice the differences more. I think it must just be something you adjust to. I'm getting better at not being disheartened everytime ds is commented on. The worst thing is feeling that people may think you're a bad parent when they don't know or understand. Just have to ignore it I'm afraid and be confident in yourself. Sorry it's not of much help, still trying to get used to it myself.

StarlightMcKenzie Mon 29-Aug-11 09:56:26

I have found having a child with a disability makes me the proudest parent on earth.

All his achievements amaze me in a way that the don't with dd for whom things are just expected (poor lass).

I know what an effort things are for ds and the smallest things are mountains for him to climb. But he does it. Developmental delays for children with these types of disabilities are not 'halts'. Progression might not be as fast as their NT children but that does not mean they aren't capable.

Have high expectations. Grow a thick skin and give your child a variety of experiences even if a bit painful for you and you will a. Get used to it and b. Become the proudest mother on earth.

makemineaquadruple Mon 29-Aug-11 10:55:28

Hi bee

I'm not sure it's exactly advice that I can give you, as I very often wonder and worry about the same thing. I have a dd who is 4.9 and possibly asd. Her issues are mainly behavioural(mega tantrums which are often violent), social skills delay and just generally a bit "different". I remember when this was all brought to reality at pre school when she was really struggling. She was 3 and I remember thinking then "is her age almost a cover up and will it become more apparent that she has xyz when she's older because it can't be just down to her being immature" iyswim. Some people did suggest that with age it would become more obvious, but on the same level you're always moving forward and you'll learn to toughen up and accept your dc's issues.

Now, I have to confess that i'm not quite there yet, but I hope to goodness that I will be. I still look at my dd and imagine what she would be like if she didn't have all her problems and quirks, but I know it's not doing me or her any good. She is who she is and all we can do as parents is look forward to and encourage steps in the right direction. It doesn't matter how small those steps are as long as they're heading the right way.

I find that for every negative my dd has, she has a positive to almost balance everything out. Ie, her behaviour can be nightmareish at times, but then after a hellish tantrum, she drawer me the most amazing and detailed picture that I can't believe she's done. It's sometimes something that I couldn't even do.

I actually have a wedding coming up at the weekend. I'm the maid of honour and dd is the flower girl. I think i'm more nervous than the bride and groom because i'm anticipating problems. I know people will look at her and i'll want to punch the people who stare too much. I also know that this will be the first time most people there will have met my dd so my stomach is in knots. I'm just offering her lots of rewards for good behaviour. My dd responds better to carrot than stick. So bee, I suppose I could actually do with your advice. How did you cope with some of the stares? Did you actually manage to have a nice day inspite of the anxieties?

makemineaquadruple Mon 29-Aug-11 11:01:20

Typo "She drawer me" I meant she draws me. Ooops.

bee169 Mon 29-Aug-11 11:08:57

Thank you sign, that really gives me hope. smile

It's just so difficult to see the huge differences and we are def more alert to our lo's delays. But I guess I am taking him to so many different things to give him as many experiences as possible. I think I just need to strike the right balance- perhaps I have not got it right. Am working on the thicker skin thing- hope to be a tough nut soon ;)

bee169 Mon 29-Aug-11 11:24:27

Hi make,

I know what you mean about the talents our lo's have- sometimes it is amazing to see!!

My ds was actually page boy at this wedding! Because we have good days and bad days I thought I would see how he was on the day and decide about walking down the aisle/photo's etc. I let the bride know about it, she was very understanding.

My only other advice is not to wear high heels as you may need to do some running and watch out for the cake - my dh saved it from disaster!!! (grin)

makemineaquadruple Mon 29-Aug-11 11:45:04

Oh god, I didn't even think about the cake!!!confused Thanks for the heads upwink

Did your ds manage to walk nicely down the aisle? That's something that i'm really not sure about. Dd keeps giving me different examples of how she's going to walk down the aisle. One idea of hers was to sort of bounce and side step. A bit like how footballers warm up on the side lines grin and another was to walk reeeeally slowly with her eyes closed. I think she thinks that's the oneblush. I know the bride(my sis) says she doesn't mind what she does as long as she's happy, but when all eyes are on you(and there are going to be a lot of eyes) it's easier said than done isn't it.

Actually a good friend of mine who's just had her first baby and who i've known for 10 years is actually proving rather difficult when it comes to dd's odd behaviour. So much so, that i'm seriously considering not seeing her anymore. Sounds extreme I know, but i'm finding it increasingly irratating and disappointing when she sees dd's "odd" behaviour. She just looks at her like she's mad and will usually say something to me like "why's she doing that?!" She'll keep asking me even when i've explained why. It annoys me that some people can be so ignorant and clueless when it comes to these kind of situations. Not everyone can be expected to be completely filled in on the facts, but just a a little sensitivity would do. It's doubley difficult when they're supposed to be a close friend or family member. Hence, i'm so nervous about the wedding.

bee169 Mon 29-Aug-11 12:40:40

He was over excited on the day so we decided not to send him down the aisle, also because he is only 3 his understanding is not quite there yet so we played it safe. Are you able to hold her hand down the aisle? I remember seeing it done at the royal wedding. I thought that was a good idea.

Unfortunately the set up at this wedding was that the page boy walk at the front of the bridal party on his own...bit too much for ds.

As for the stares, I guess I don't mind them coming from outside the family cos I don't care about them. Its just people that are close to you making comments. I still don't know how best to deal with that i'm afraid but I am sending positive vibes your way for next week ;)

coff33pot Mon 29-Aug-11 12:58:49

I think you have to just grow a thick skin to be honest. I am proud of my DS achievements which are easy for my other two DDS. You are on watch all the time when outside of your home surroundings and because you spot an issue or anxiety it doesnt mean others have you are just more sensitive to it. People on the street dont bother me anymore in the slightest. I dont know them and will probably never meet them again so what does it matter. As long as my DS can go out and feel comfortable in his own skin that is all I am interested in and will continue to take him out for his social skills practice.

Friends who suddenly act "different" get rid of or if you sense it is just because they are uncomfortable and dont know how to act, buy them a book. Ten Things is a good one to share around. They may then understand how your child is ticking. If they dont ..........get rid grin

Incidently when it comes to weddings any child can make a spectacle of themselves. My DD is NT and when she was 3yr we had a church wedding to go to. She was sat in the isle incredibly bored because its so long for any child to sit still. I told her what was happening and that the priest was telling them a lovely story about getting married thinking that would ease her boredom and curiosity. She belted out at the top of her voice 5 mins later "This story is boring! Freddy Frog is not in this story so I dont like it!"

Then at the reception we were all sat in a huge square around the hall. Each person had a candle lit and decorated. She was sat between us. A mans candle two seats down burnt straight down quickly and he hurredly blew it out and sait "ooops we nearly had a fire"..........That was it DD had heard this and stood on her chair and screamed "put it out! put it out!" and every one of 250 guests had to blow out their candles before she would calm down blush

magso Mon 29-Aug-11 20:19:07

I think in the early years you tend to notice the differences and grieve for them. Later on, you notice the wonderful things ( the beginning of interaction, communication, imagination, humour) and celebrate them.
It gets easier IMHO.

saintlyjimjams Wed 31-Aug-11 01:08:38

Oh yes bin useless friends. Kids with disabilities are a great friend filter. I have such lovely friends now, the useless ones have cleared off.

My son is 12 now and severely autistic, there's a video of him on the surfing thread. People don't always notice right away (which has cons because then they get huffy with him when he does something odd and will tell him off, of course he doesn't respond, he's non-verbal). Go easy on yourself though, the early years are tough because you don't know where you're heading. It does get easier. Your rhino hide grows and you begin to find out what works and what doesn't.....

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