Do parents of children with asd accept it and not feel sad eventually or not?

[SadieChanges]

Ds is 2 and getting assessed soon , pretty sure he is autistic. I range from feeling really positive to googling and crying about the stuff I find and being so frightened of the future .

I have been really active in getting him referred, play therapy , starting preschool and joining a support group but then I will get all upset thinking about his future. Does this feeling improve as I know it's about me as ds is mainly happy at the moment .

My DS has HFA and is 6. He was diagnosed about 2 years ago.
I tend to focus on the current issue we are facing rather than scaring myself with the future. I don't know how things will change for him as he grows up, what he can / will achieve, I just hope he will be happy in himself.

I think it is a mindset change initially. Changing expectations from those of a NT child to those that your child, with autism, may reach.

Try not to scare yourself too much. Each child is different and can achieve different things in different environments.

I accept it yes. How can I not? To not do so would mean I don't accept HIM and it is so very MUCH of him. Troutboy is 15.
And he is brill you know ... Not just that he's brave and kind and funny.. Sometimes I think he is the best of all of us.
He's a support for us too. I never saw that coming . In times of hardship ( family deaths/ operations/ job losses etc for my family, there is something so solid and constant about ds...he somehow just makes us feel that everything is going to be ok. We lean on him. Dd 9 nt has a crap day at school sometimes and she comes home and badgers her big brother to play with her.. and he does... and somehow he can ' re-boot' her in half an hour in a way that would take me all evening to do. Every home needs a Troutboy ;-)
No... Rarely feel sad. A smidgen of sadness at big life events that he doesn't hit or doesn't access when his peers do... But that ghost of an nt boy (who never existed )rarely haunts like in the early days.

It gets easier and you get more proud

It gets better, I've been on this road for 12 months now and have changed a lot. DS is 4 and we're about to get a positive diagnosis (Paed DR says he'll eat his hat if DS is not on the spectrum). It's taken me a year of pushing, hoping, denial, crying etc. It's similar to the stages of grief. Denial, anger, eventual acceptance. You'll get there. Your little man is still the brilliant boy he always was, he's just officially "extra special". Your definition of success changes, small victories ... a new word, a new skill learned. You appreciate the details of life more. Keep the faith.

Thanks all for sharing your thoughts . I feel crap now though as the clinc rang to ask if we could fill a cancellation and go for assessment tomorrow . It would have been fine but my childcare lives 200 miles away! She wouldn't even let me sort childcare and call her back. I love my dd but its difficult not having any help nearby in situations like this . I did consider going alone and dh watching her. The form says 2 adults though and I think it would be better if we are both there. The council crèche is a gym that you have to stay in.

This is our stupid fault for moving away from our family I suppose , I'm so jealous of people who have family or close friends to help out.

Just having one of those feeling sorry for myself days I guess!

You sound like you've done lots already and it's blardy exhausting to be honest. You are going great...Cut yourself some slack!! It can be very overwhelming. I always think it is useful to remember that there are lots of experts out there, but there is only one expert of YOUR boy and that is YOU... You are going a great job with him every day
1.Ok to have a down day
2.Ok to let it go a bit ( I think most of us have bursts of energy when we get lots sorted and then periods when we let go a bit)
I only have friends nearby ( family in south us in north ... We see them about 3 times a year).
3.Any friends in support group you could use for babysitting for few hours? If not take her with you? You could do a swap over half way through so they can speak to the other parent if they need to?

1. Chin up :-)

Thanks troutsprout ,love your description of troutboy by the way.
I have only joined the group , chatted to a lady on the phone and received their newsletter , I was planning to go to the drop in tomorrow for the first time so don't have friends there.

I have a couple of friends here but one is about to have a baby , another seems to have barely been in contact since I have found more out about ds ( may be coincidence ) the other is lovely but a bit unreliable. They also have their own small children. I spend 24/7 with both my children and me and dh never go out without them , I accept that but sometimes in situations like this it would be nice if we could just focus on ds together rather than dashing out to sort dd halfway through an assesment , it also says no other children so don't want to go against the guidelines.

I feel like I'm not doing enough , I feel like I should be trying to teach him more than I am. Sometimes just doing meals, nappies and a bit of housework seems to take forever and I don't have enough time with him.

Having the assessment a bit later isn't a big problem in the grand scheme of things, though it's probably hard to see that at the moment. Do it later when you have your childcare on hand, then you can both concentrate on it.

It does get better, they will go to school and you will get a small amount of time back. My DS2 is 13 now, and while he still doesn't really do friends, anyone can babysit for him, and have been able to since he was 5 or 6. Before that, no!

As trout says, I can't imagine my DS2 any different. There is no NT boy that I'm grieving for. I do still get sad, when I feel he's missing out on life events and occasions, but he is happy. I work around him now, to make sure his brothers don't miss out too much and sometimes make DS2 join in things for the sake of his brothers. And he is lovely, as well. Infuriating and either really happy, depths of despair or passive, all within 1/2 an hour! But he's coped really well with some difficulties that life has thrown at our family, so long as he has a computer he doesn't care where he lives or whose weekend it is!

My coping mechanism was to avoid thinking about the future. The next year or so is enough, the next big transition or new school etc. No point worrying far ahead of time, so long as you get on top of the next challenge. X

Tbh though it does get better in the sense that you just get on with it and get more adept at dealing with issues, I think I will always be very sad about the dc diagnosis. I do still grieve for the NT children I didn't have and whilst I love my children dearly this won't ever go away for me. I suppose the thing I hold onto is that the children's are themselves happy and don't know they are missing out. I do worry terribly about the future and consequently avoid thinking about it.

My DS is nearly 18. We can now look back and see what he has achieved and the things he does that we thought would never happen.We try to focus on that rather than our fears for what he might not do and he continually surprises us.

My asd boy is 9 and I am not sad anymore, genuinely. I couldn't love him more, he is happy and I have sort of adjusted my mindset to how our lives are going to be. I worry about when DH and I are gone, but then I'm not fond of the idea of dying and leaving my NF daughter either. For my autistic boy, who won't be independent, we are doing practical things like wills and trusts. He was born autistic, genetic in my view, just like he was also born with brown eyes and a wonderful handsome smile. What are you going to do? Life is short so i might as well not mope or rail against fate, is my general philosophy. But I'd say it took a good 4 or 5 years from diagnosis. And it certainly doesn't mean I stop pushing my boy for improvements, or give up hope of leaps in his abilities. But not from any miracle cures, just from hard work on his and my part, and ABA techniques. Hth

ds2 is 10, have we accepted his disability yes, it is very much a part of him & we are totally accepting. Its not to say that I wouldnt remove his disability if I could but because I would like to make life easier for him.
Do I feel sad, 99% of the time no,its just that odd occasion when it catches me unawares or when a direct comparison between him & his NT peers slaps me in the face.
It is the future that worries me, he wont ever live indipendantly & that makes me sad but hey doing your own wahing & ironing is overrated anyway :)

DD is 14 and diagnosed 18 months ago (aspergers). The diagnosis itself was a huge relief but I haven't and not sure I will ever come to terms with it.
Although it is a part of her, and what makes her quirky and funny and brave, I hate it and if offered a magic wand or a cure I'd take it.

By the time he was diagnosed, I was not sad and never have been, because I don't see his autism in negative terms. He is high functioining but has some very real difficulties to work on. He is who he is, it is what it is. Knowing who he is and that he is autistic has been nothing but positive for us. I think the diagnosis probably saved our marriage, saved dh's relationship with Sleepyboy, and was immensely positive for Sleepyboy's understanding of himself. He was always autistic, we just didn't understand him properly before.

I have to say I do still find it incredibly sad from time to time, 4 years on. In fact sometimes the pain is utterly crushing. I had so many dreams for what we would do together as a family, and we are now so limited in what we can do it can be unbearable. The other 2 rarely experience an outing with both parents, as one of us has to stay behind (or do something separate) with ds1. I see other families take their freedom and spontanaiety completely for granted and that's very hard to take. The constrictions that we live under can seem almost unbearably suffocating, especially if I think long term.

But, on the bright side, he is still a wonderful part of our family and we are all better for having him in our lives. He himself is very unaware of his condition, and is blissfully happy for the most part, so we need not mourn on his behalf! And the pain definitely doesn't strike anything like as often now. For us I think having periods of respite (however brief) help enormously, so we can have our fix of 'normality' and then collect ds1, all fighting to be the first to hug him and welcome him back!

No ASD but severe GDD and no idea what the future entails. At age 2 I was in blind panic and raging grief. Coming up to 3 I almost dont recognise myself. I still have moments of feeling sad, but DD brings unexpected joys into our lives. It is hard, there is a lot of extra care involved, she has a lot of needs that an NT child wouldnt have and I still wonder what the future holds but increasingly I wonder rather than worry. I could not have forseen this when she was 2.

I echo Leonie and poltergoose.

I knew what his diagnosis would be, it was more of a formality TBH.

In the run up to and for a while after, I was consumed by the need for knowledge and googled extensively on all aspects of the subject, I suppose it was a little obsessive, but it helped me to feel prepared and in the know.

I don't feel sad, I do feel worried for the future, more so now with this current government.

I worry about the battles to get him the support he needs.

My advice is at some point when you feel able, swot up, forewarned is forearmed.

I'm not sad. Haven't been sad about it for many years as I have had a long time to get to grips with my DS2 and how perfect he is in his own way.

But that's not to say there aren't moments which don't make me catch my breath or my eyes fill up, there are. Sometimes it's the sweet things that hurt. DS2 is 15 and still believes in Father Christmas.. his excitement is building daily, he can;t wait to track Santa on Norad! In some ways it is so sweet because it makes Xmas come alive in our home, but in other ways it is so bitter sweet... who else has a 6 ft teen who has to be shaved by him Mum, who still utterly believes?

Then there is the future..looming fast. I have his final annual review in a couple of weeks, then no more Statement but off to a special needs course. No GCSEs no A level prospects, his future his so totally unknown to us. Will he ever have a job, a girlfriend? How many more battles will I have to fight to get him enough support to live with dignity and independence as an adult?

That's what makes me sad.. but not his autism, because that is simply part of the dear, sweet, trusting and so totally GOOD person that he is.

DS was dx only 2 months ago and I still feel sad when I think about it. Dp's dd was dx 4 years ago and he still feels sad when he thinks about it. He says that the sad feeling isn't as intense over time, you'll always feel sad about it but just not as often and it gets a lot easier to deal with over time.