Can anyone understand this?

[Jimjams]

Am posting hesitantly as I know this could very easily get misinterpreted. So before I start I am not trying to be in any way nasty.

When ds1 was little he looked like he had a little problem, "mild speech delay", then it was autism but "high functioning" and now he is severely autistic.

in the meantime all the children who were worse/same as him have completely outstripped him. All the children I know well don't just speak, they are conversational. They are light years ahead.

I don't feel jealous (these are my friend's, I like their children, I like them , Im pleased for them), but I do feel lonely, or different, or downtrodden, or hard done by!

So now what, how do you deal with that? we're pretty isolated already- there is one person I know well who has a worse situation than me (imo) but she uses me to make herself feel better (so isalways making ds1 out to be a complete non-enitity, and always telling me that he;s the most difficult/autistic/challenging/insert whatever you like child she knows) So I avoid her! I only really feel at home in ds1's school now. Other times I feel like I did attending toddler groups when ds1 was 2, I dealt with that by aoviding them, but I can't avoid everyone in the whole world.

Someone else tell me they feel the same please!

Sometimes I feel that dd has the most obvious needs in her year and do feel a bit like you.

Also had (!!!!) a friend and both of our kids had sn and like yours she kept saying how much worse dd was and it just wasn't the case. Her son was dx eventually with NF1 and it is a condition that gets worse as you get older but still to make herself feel better will put dd down. The last time I saw her in a supermarket was the final straw. Her ds was very auti and it was obvious from a young age, however she said to me oh it was obvious really early on that dd wasn't right. I just thought f* off. I do not need people like you in my life.

I too was told dd had glue ear and would catch up. So although as I said before I don't completely understand as our children are completely different I do know how you feel in a way.

I even find at the sn gymnastics, tramplolining etc that dd is the worst behaved and feel like not going. Always makes me completely understand why the family with the 2 boys who had autism left to live in an isolated part of Scotland.

Jimjams, No I don't feel the same. Why? because I might at times feel like I'm hard done by having to cope with an autistic child, but my ds is a high functioning autistic chld so I can't begin to imagine what it must be like for any parent to cope with a severely autistic child. I'm really not trying to make you feel worse(than you already are) but just need to say that I can't feel the same but really can empathise.

Thanks - I;m beginning to feel like a bitter and twisted hag (even though I know I'm not jealous, I just want people to understand- which is a bit odd! What difference does it make? Bizarre.)

You know how when you first start realising that something's up and you say "blah blah: and someone says "oh all children do that" and you kind of think - "hmmm well they don't", I feel a bit like that now. Just like we're completely different from anyone I know. Except in school where all our children have the same level of need more or less. But I don't know anyone really well there yet. I am lucky in that one of my closest friend's has a dd who used to be non-verbal, so although it;s not her life now (her dd is doing sooo well) she does remember what it was like.

so many parents are simply horribly competitive and you either tune it out or drop them. It's such a shame.
You don't sound remotely nasty. Of course you feel pissed off and hard done by.
One of my friends is clearly distainful of ds because he is clumsy and babyish sometimes. It does hurt, but I suspect she doesn't even know she is doing it. And I have my own views on her children! (ps I am NOT talking about any Mumsnetters!!!)
Not everyone is the same.

It's not the difference really- it's just that everyone else I know is moving forwards whilst we seem to be moving backwards. for example my friend with the ex non verbal dd used to be as limited as us in what she could do, but now they;re not and she can do loads and loads more than us. Which is great for her, but I've lost my companion on the "journey" iyswim. (cheesy bit not sure how else to put it).

Mind you she did tell me recently that she saw me once walking along the road with ds2 in a pushchair and ds1 walking along nicely holding my hand (he was about 3) and she couldn't believe we were doing that near a main road.

Our life seems to have got more and more restricted whilst everyone else is improving. And I thikn the problem is I can;t ever imagine it being any different.

i was talking to someone recently about ds1 and she thought that he "should" be able to talk, (because of the things he can do speech wise) and she said the most important thing was to believe it (davros if you;re reading I know you are cringing PMSL), but I don't think I can anymore.

Oh I don't mean all children are not the same, I meant not all people are the same - ie wanting to do your child down to make themselves feel superior. But I can understand wanting a companion on the journey. That makes perfect sense.

Jimjams not sure if you have seen this but the NAS have a list of asd friendly (some specific) holidays here

I actually found it for my friend who has 2 children with asd and her last holiday was a nightmare.

HTH

Ah I see aloha- yes said "friend" is rather odd (and does it to everyone- even my friend's dd who is doing so well I can't imagine how anyone could find anything negative to say).

Thanks BH. Do you know what we're doing? Just decided today. Friend's own a caravn nearby and are letting us use it at the end of October for the weekend to see if ds1 likes it. (Last time we did a static it was a disaster but that was over 2 years ago).

Sorry it is a bot off tangent for this thread but when I found it I thought oh that would be great for Jimjams

Great. Really hope it goes well xxx

Jimjams, I definitely feel like that, and without trying to "bottom" you, I know that my day to day life with Ds2 is loads easier than yours. I have felt sad (and tbh a bit jealous) since school started watching all Ds2's contemporaries start school. Meanwhile I still push him up to Preschool in the Maclaren buggy as we have kept him back a year and he will probably go to a different school anyway. One thing that I find hard is that Ds2 doesn't fit any diagnosis, no-one seems to know another child like him, I am constantly been told what a "complex little boy" he is or what a "puzzle" he is. So I have no groups where I can meet parents with similar problems because no-one seems to have similar problems.

Jimjams - it is perfectly okay to be feeling like that - on the one hand - pleased for your friends etc but feeling cheated and left alone. I find I have moments of it. Where I feel dd1 is not progressing and nothing seems to be happening when all around me children are changing and developing - sn children and NT. Depending on where I am depends on how different I feel. I have a good friend whom I met when dd1 and I started attending the sn playgroup who is my companion on the journey BUT at times I feel isolated from her when I look at how verbal her dd is compared to dd1 or I see her dd doing thigns that I feel dd1 should be doing... and I start to feel alone and different.

Stupid inane comments like 'believe it will happen' really don't help do they?!?! Sometimes in the midst of life and all the crap it throws at you - it is hard to listen to comments like that.

No - you are not nasty and it does help to have a companion on life's journey especially when it is one fraught with tough times.

Sorry I have rambled .... just wanted to let you know - that I feel like that at times too.

I just a massive reply and then the power went

What I was saying was...

Yes, within my little world, yes I can undertand how oyu feel. Within my world I'm the only one who has a 4 yr old that doesn't stand or walk or talk (much). I'm the sore thumb if you like, the odd one out. So yes I feel lonely sometimes, and I don't always like being the different ones. I don't feel downtrodden or hard done by thouhg but I can understand how you might. As much as you adore your DS there is no gettin g away from the fact that having a severely autistic child can be incredibly exhausting and that tiredness will make you feel downtrodden, you have a very challenging job there.

this post isn't coming out as well my first and I think sometimes I seem to words things badly wth you so I hope there's nothing to upset you in this post. I just really wanted you to know that, yes, sometimes, I feel the same.

JJ- loads of sympathy. I don't know how you're feeling in terms of having felt it, as you know, but I've seen others go through this. Imo, one of the most difficult things about autism, and God knows there are zillions of difficult things about autism, is that if you take a room full of autistic 2 year olds you just cannot predict outcomes for them. It's not that they haven't all got the triad of impairments at that time, of course they have. But in a very few of them the effects will be so very mild as to shade into normality within a few short years, many more will be somewhere on a spectrum of significant lifelong problems and for another few kids problems will be multiple and profound. That's why I think it can be difficult for professionals to support parents well at the early stages. No one really knows what they're dealing with and what level of disability a particular family might have to come to terms with. There's a terrible balance to be struck between informing parents about autism and the ways their child might be affected while not scaring them witless about outcomes which may never come to pass. I've worked with families who have children with all sorts of different disabilities but ime autism is one of the hardest for parents to come to terms with because there is a constant readjustment process. It's not just a matter of taking however long it takes in accepting that your child has a disability and really grieving about that. There's more to it because the goalposts keep on moving, as they have with your boy. People who looked to have a very similar child at 3 or 4 and were a great comfort may turn out to be dealing with a very different situation to your own. It's the reason that parents' autism groups occasionally don't work. And emotionally it looks very very hard to me. So lots of love to you.

I feel exactly like you, Jimjams. In fact I was coming on here to post something similar to what you have posted but then read yours. I have recently decided not to bother seeing a friend anymore whose child used to have similar probems to DS but has now outstripped him. Whereas we used to talk openly about how hard it was to have a child who was "behind" she now goes out of the way to point out to me how "normal" her child is and all the funny things he says and does (my DS doesn't say anything at all).It feels as if she is trying to disassociate her DS from mine, and maybe I'm being over sensitive but it feels deliberate and insensitive to me. i thought she of all people would know how to be a bit more tactful.

I know you can't avoid everyone in the world but I do also think you have to be gentle with yourself and as far as possible avoid people/situations that make you feel bad. I would spend more time trying to make friends at DS1s school so you can run there for support when you need it.

I remember when i broke up with a boyfriend after 5 years of living together and he then started seeing my best friend, I forced myself to go to places where we had all hung out before to prove to myself and them that I could handle it. It was so painful. Now I just wish I'd left that town sooner than I did.

Jimjams you might remember me as you have been very supportive and informative for the issues we are going through. We are still struggling for a dx and dont know what we are dealing with or what the future holds. I remember being told oh things will improve when he is X amount of months old, things will improve when he is mobile, things will improve when you pull gluten and dairy and soy and egg and citrus from his diet, things will improve when....and they havent. I think what you are feeling is similar to what I am feeling the dreaded what if this is as good as it gets and ds only gets bigger but not better, how are we going to cope and why is there no one else with a ds like this. It is so extremely daunting, we have our good days and our bad days and mn and posters like you have got us through the bad ones. I know that the issues that we are facing are so different to your own but I think when you are feeling isolated you end up trying to link with anybody else in a difficult and challenging situation and give each other strength. All I can say is that I have tried to stop worrying about tomorrow and next year and to just deal with today. There may not be anyone out there that is in your exact position but there are definately ppl out there that are daunted and overwhelmed by what they are facing. Have a huge its not fair tantrum and come on MN for lots of support. Not sure if I have been helpful or totally insensitive but please know that helpful was my aim.

Jimjams, I just wanted to say how very strong I think you are. I am at a loss for words, really, on how to be supportive for you, but I do want to lend support in whatever way I can. I cannot imagine all the things that you handle in a normal day that would overwhelm so many of us. I have a friend who does play therapy with autistic children. Is that something that might be possible for your ds?

[big hug emoticon inserted here]

hello I am sort of not on this planet atm, i think my ADs have kicked in and I am so bloody calm its untrue but anyway.......

yes I feel the same. Yes I am glad I have moved far far away from all those children, as yes it was harrowing. DD was soooo mild and now she is so severe. It is gut and heart wrenching. It is hard enough to come terms with what is happening to your own family without seeing 'how well' (and lets face it they really arent do that well on the grand scale of things, but we want that) other children who were like our little ones are doing.

But....progress is there even if it is slow. yes other things keep popping up and some days you just want to curl up in a ball and die (or at least sleep for a year) You feel the whole world is wicked to your child and you feel there is no end.

The best thing to do IMO, is to try , and it will take time, to make friends at your ds's school and hopefully you will meet a likeminded mum like i have. I wish we lived closer as i know me and you would get on like a house on fire My frienbd has an eleven year old dd who is non verbnal with severe autism and she is behaviourally alot better, and it has only just come (!!) that she can take her out and do things. i know that is most probably not much help and 11 seems miles off and all kids are different and blah blah blah but just try to think it may not be forever

I am not sure this post has helped i have wittered on and on!

Hi there i think i understand how you feel Jimjams ,i have searched the net just to find someone who i can connect with that has a child like my dd she is 12 and still non verbal still has meltdowns and most of the time its like walking on egg shells sitting still for a couple of minutes to do a task is a major acheivement and she never sleeps i have withdrawn from the family because no one else trully understands they all have NT kids and all sit around crowing about the latest exam result where as theres me, two with Autism ,i sit there and i feel sorry for myself about it so now i just dont enter the conversation ,i hate it when they say yes mine did that when they were so and so and im left there thinking yeah my dd still cant do it and shes 12 now ,i cant cope with peoples NT kids i tend to hide away till they have gone i dont know why there great Kids maybe its just cause i dont want reminding how mine should be so there i sit with dd till they have gone watching her wishing she could say something anything friends all disappeerd after dx thought it was catching i think ,i will continue my search for someone who understands who has a dd like mine but i wont hold my breath and that makes you feel so alone ,but i have my sence of humor and my kids and some net friends and thats ok for now

Oh yes, I can empathise. We have the only child in the county with her particular condition, and I sometimes feel jealous of EVERY SINGLE BABY GIRL I SEE. screwed up, or what?

It's not that I don't think Little Miss is perfect, because I wouldn't swap her for any of those little girls. It's just not fair that we have to go through what we do. We also avoid toddler groups because we found them sooooooooo competitive. (Even reverse competitive! we were in one baby group where a mother of a child with excema tried to 'trump' us! unbelievable) I'm fed up of answering in the negative when asked if she's crawling/walking/dancing in the west end theatre yet because no, she's not, but given her situation she's sitting up and reaching for things and bouncing up and down and as far as we're concerned that's bloo...ming fantastic.

whee, I sound bitter! I can't suggest any strategies really, wish I could. I'm going to try, once Katie's had her jabs, taking her to a nursery (we're allowed to go for one afternoon a week to a local one as long as I stay with her and retain all responsibility for her)just to try and get her used to other children (other than the 5 she knows of friends) and to get them used to her. But I can understand that we're at the start of that particular journey, and I can't think how frustrating it will be to be at your stage. I just wanted to let you know other people feel like this too, and I don't think it's wrong to do so.

big hug

J has AS and is quite able, so I'm not on the same scale as you are with your issues, JJ, but I wanted to let you know that I feel part of what you're experiencing too. Since J was a baby everyone has commented on how bright he is, how well he was doing, how far ahead of his peers he was. I often sensed a little bit of jealousy from some people, but I admit that most of my friends are good people who don't make comparisons that much. However, since J's been in school the gap is changing. He's still a long way ahead academically but his behavioural/social problems are causing him difficulties, to the point where some of the brighter children are catching him up in some areas, not because they're cleverer than he is (or even equal) but because they're more able to take instruction and concentrate better than he can. I've even been told that a parent was overheard to say "That J, he's so clever, you'd think he'd know better than to behave that way wouldn't you?" Although nothing's said I can feel the air prickle with "Hm! Not such a genius after all, is he?" even though it was never me who claimed he was academically gifted in the first place. In fact, I've often said I'd willingly drop a few IQ points to have his behaviour be more appropriate to give him a better chance of social acceptance later in life.

This week J rode his bike without stabilisers for the first time. Now I don't need to tell you lot how massive that is for a child who can't take instructions, but for us it's huge and it signifies how much J has improved since we've been taking him for cranial osteopathy. Yet it's hard for me to share that with school parents because a) most of their kids have been doing it for years and b) it's no big deal, an important milestone for everyone but they can't see how it's so different for us.

So yes, I can understand a lot of what's been said on this thread about comparisons and feeling left out. It's hard for other people to see how proud we are of our children's achievements, however small they might appear to them, but I think the important thing is to try and keep some perspective and not be guilty of making comparisons ourselves. I do care about my friends' children, but J is my priority and I always have to put his successes first.

Hope you're feeling a bit better about things today JJ.

Gosh-thank you - I thought this topic had the chance of going pear shaped, so pleased to find that it's not just me. Oh Fio- we are so similar- ds1 also was soooo mild and now so severe. I found a teddy bear this week that he gave dh the xmas he was 2- he is singing twinke twinkle little star on it (it's one of those ones that you make and record your own message). The words aren't clear, but they are identifiable with the tune as well. Now I'm terrified the batteries will run out!

Scummy - you have such a great insight without having experienced it first hand. Wish everyone was like you. You are so right that the support groups often don't work out. A new one was started in our city, but my friend went and came back saying "not going to go again - they've all got kids with AS and they're talking about GCSE's" I tend to think its a shame that that seems to happen a lot, but then I guess the needs are so different.

I am lucky with school. They have monthly meetings- and there I do feel like I am in the same place as everyone else. Just wish they had weekly meetings

I'm also starting my course this week so am hoping that being outside and away from parenting will make it easier iyswim, and less isolating.

Dee - your dd does sound like ds- and I also avoid NT kids (well most, I see a few- definitely avoid children his age though).

jimjams - record his singing onto another medium asap.