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How do I move on from DS2's ASD diagnosis at age 13

(10 Posts)
Ricepapermum2 Mon 13-Mar-17 12:05:16

After a long time getting so much helpful advice and tips from reading others threads I've decided to post. I feel stuck! After waiting on ASD waiting list for an assessment DS was finally diagnosed last week. I was convinced that because of all the years of appointments seeing so many different professionals about my lovely DS he wouldn't get the diagnosis but he did. At the feedback after the ADOS they said as soon as they saw DS walk in room and the way he was reacting that he was on the autistic spectrum.
We have had so many awful wasted years for my poor DS struggling at school and in life. He has no friends. Over the years I have hung onto every word in appointments willing that THIS appointment will be the one that tells us why life is so hard for him(and us As a family😓) I have had a paediatrician tell me ever so casually when DS 2 was 4 that he was "retarded" as if it wouldn't upset me. On that appointment I had only gone in those early days via my GP because my DS2 wasn't putting on weight. I can't forget the first parents evening in reception when after the teacher had 'moaned' a bit that my DS wasn't coping with school life so far and I innocently asked "how long do you think it will be before he catches up( he had at this point hearing issues) to be told by her " he will never be like the other children" . I will never forgive those cold words on a wet winters evening sitting on a little plastic chair.
I am not depressed or sad about the diagnosis from last week, v relieved that finally we can help DS understand his difficulties and all the anxieties but why do I feel so guilty that it took so long and that my DS suffered so much along the way because of this. I feel like I have been washed up on the shore on cold wet sad. How do I move on from holding on to these awful comments and blame from over the years. I want so much to start a life and not look back but move on for my family.i have few friends, I seemed to have lost them along the way and friends that I speak too have no idea of how our life is with DS . Their struggles are nothing like my child's. Going out , eating out etc are all difficult for poor DS. Any words of wisdom if others have felt some of these things would be great. Thank you.

zzzzz Mon 13-Mar-17 12:28:08

What would have been different if you had had the diagnosis earlier?

My ds was diagnosed at 11 ( though there was never any question that he was neurologically different). There were both negatives and positives to that delay in diagnosis but they didn't effect who ds is as that is nothing to do with what you call it.smile

It sounds like you are feeling cross and muddled, guilty and angry at professionals. I wonder if some counselling would help? Somewhere to talk through your feelings and look at them so you can stop rehashing? I've never done it but I can imagine it might be very helpful and provide some rest at the end.

PolterGoose Mon 13-Mar-17 13:26:01

Message withdrawn at poster's request.

Ricepapermum2 Mon 13-Mar-17 14:54:36

Thank you for replying.
Zzzzz- I think if DS had had the diagnosis earlier I would have had more understanding as to why he struggled so much and could of helped him in a better way. Instead of people telling DS he was lazy,wasn't listening etc and that I needed to be firmer with him. I was told I needed to talk to him more- because he wasn't talking at 3years, implying that I was leaving him in front of the TV all day.
Poltergoose- thank you. We have talked about the diagnosis with him. I was worried he would see it as another thing to get anxious about, but he was ok. At long last we can give him answers as to why he finds things difficult. We have looked at some age appropriate books and I am being led by him as to how much information he can take in at a time.He is still my lovely DS .

As I said in my post I am relieved at last . I suppose what I was trying to say was I feel at last a fog is starting to clear,a fog that I hadn't realised I was in really as the struggle to get help became normal to me. Yes I am cross that today somewhere another parent is being fobbed off with denial and unsympathetic words when they are trying to get help for their child.

zzzzz Mon 13-Mar-17 20:32:40

I was told I needed to talk to him more- because he wasn't talking at 3years, implying that I was leaving him in front of the TV all day.

I'm so sorry. I only got this mildly because my delayed talker is one of twins and even the meanest couldn't explain exactly HOW I had managed to only talk to one. They almost instantly morphed it to "not enough attention because of siblings" angryconfusedangry

Shybutnotretiring Mon 13-Mar-17 23:07:38

OP I feel for you. I too remember with horrible clarity the Reception parent's evening where I was told that DS was 'special needs', but not before the teacher had asked 'how do you get on with DS's father?' [I am a single mother]. I too got all those comments: 'DS doesn't like the hard graft' and 'DS needs a firm hand' which mystified me a bit at first. Oh those naive days when i didn't fully realise she was saying, this is your fault for not disciplining your son. Later on she was careful to spell it out properly 'there is clearly a lack of boundaries at home; mum has been observed ignoring his behaviours'. I know it should be about him and not about me but I can't help feeling bitter about the blame. And I just can't get over how he has such serious behavioural and learning difficulties. Maybe I will in the future, maybe I won't. DS is 9 now and I'm putting all my energies into trying to get him into the right special school. Probably hopelessly naive again but hoping if I can get him settled I can work out what's going on with DD. Aged 7 she sucks her thumb, puts toys in her mouth, always says she's too ill with tummy ache to go to school, obsessed with animals, really more difficult and un-cooperative than DS alot of the time, monumental sulks...

Ricepapermum2 Tue 14-Mar-17 09:28:24

That all sounds hard too Shybutnotretiring. I need to learn from all that I have been through. I have found it v hard to talk to people about all of this. I have managed to hang on to my job because I have to- I've dropped my hours to only 1 1/2 days a week so that I can fit it around DS. I drove to work in tears, worked my hours keeping up a front so I could do my job well. As soon as I was back in car driving home
, I was in tears worrying about my DS. At this time we were trying to get him a place at a special school for MLD as he was finding mainstream so hard. We had been on ASD waiting list for nearly 2 years from start to finish, like many others.
He eventually started at his new school but still finds it hard. We have reduced for a long time now all demands at home to help him and are very led by what he can cope with. School and life takes all his resources and by the time he gets home he has to flop and unwind.
I have so many worries for him. I don't think he will ever manage to live independently, as far as my DH and I are concerned he can live with us for as long as he needs too. Every day I am trying to give him v tiny little things to help build up what's left of his self esteem, ie helping chop veg for dinner, playing with him on minecraft( I haven't a clue!) and praising his Lego creations as we build them together.
Does anyone have any advice on friendships for DS, he has said he would like friends but he doesn't know or have the social ways to talk to peers at school. He also says" how do I know if they will be nice or mean, it's such hard work?" We tried a club for children with additional needs but he couldn't cope with it. Too busy and noisy and perhaps overwhelming for him. He removed himself away all the time to being on his own or going outside. The parents stayed with the children and the idea being parents got support from each other, which I found helpful. Any advice would be great. I'm determined not to shy away in life now, my DS deserves so much help he is so caring and quiet but with meltdowns, anxiety etc.

Shybutnotretiring Tue 14-Mar-17 23:45:11

It really is hard to know what to do. Here is an extract from today's account in the communication book: 'went to the assembly hall, shouting, swearing, kicking and punching. Mrs [X] and Mrs [Y] had to help me to take [DS] to the [pastoral place].' All I could get out of him about it was that he was annoyed that the teachers make all the rules.
Sorry to hear that things are still difficult for your DS even at special school - but is it one specifically for autistic children? I suppose that's another thing I have to be realistic about; special school won't be a magic wand.
Hard to advise about friendships too I'm afraid. For years DS had a very stormy 'friendship' with one boy (who also turned out to have ADHD). One moment they would be thick as thieves the next all sorts of verbal nastiness and violence breaking out. I suspect the other boy's parents may have forbade him to have anything to do with DS. I'm not offended, things are much better on that front now he has some friendships with some mild but also distinctly neuro-divergent children. And I do worry that he might not forgive me for taking him away from them, especially if there isn't the peer group to make similar friendships in special school. Not that we get invited to playdates/parties though. I had to laugh the other day (better than crying). DS had got into one of those cringey 'I want to go to child X's house' conversations. I thought the mum said 'We'll have you round Monday'. I was a bit taken aback at such a sudden and specific invite. She soon put me right: 'we'll have you round ONE DAY'.

Leftatthecorner Tue 14-Mar-17 23:56:46

OP I have no wisdom, but what is very clear from your posts is how loved your son is. You have done your very best, with the information you had available. There is nothing to feel guilty about. Sending you and your boy very best wishes x

Ricepapermum2 Wed 15-Mar-17 09:59:05

Thanks everyone for taking the time to reply to what seems a bit of a mixed up and garbled post.😀
I'm going to take some time out worrying about everything and start keeping a kind of diary to work it all out and put in place small things to help my DS, starting with the most important to him at the moment.

Now I have re read my post I realise I hit a wall last week and can see that over 10 years of trying to be heard and access help caught up with me. I thought when I got his ASD diagnosis finally it would all be ok. But what happened was it let in the floodgates of all the crap I had took on and it washed away my protective layers I had used to try to cope.
After the ADOS I could hardly hear what they were feeding back to us, as I was in such a state but one thing that stood out a mile to me now was the kind and wise S&L therapist and ASD lead specialist who said how lovely he was and how hard he had tried at all the tasks they had given him in the test when they could clearly see how much he was struggling. This sounds mad but I think this was the trigger,- that gave me permission to let go off the negativity I'd been told in the past- v few people in schools, hospital assessments etc had ever said positive things and it was a massive shock!! That sounds stupid to others I'm sure but that was the key to unlock. Little did I know that a week later that was the trigger to how I am not coping at the moment.
Now I move on , I give myself some time and go on lots of long walks and try to heal so I can help DS and get ready for the new battle of his statement changing to a EHCP, which is anytime soon. I am armed and ready and thanks to great advice on here, I know where to look for advice.
For me having this diagnosis for DS is the best thing that has happened. Yesterday I had two phone calls from ASD S&L therapist telling me they are making appointments for DS to have a new assessment for his receptive language needs and some support therapy for his sensory processing needs and a place to go on the SYGNET course for me. No battle just understanding this time.
I have to pinch myself that this happened and it wasn't a dream.😮😀

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