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I'm feeling really down about DS1 today. I wish I could understand him.

42 replies

Pinkchampagne · 15/04/2008 15:57

I am really struggling to understand his behaviour. He is so different from other children his age, and it is starting to stand out more and more, but we still have no idea what the real problem is.

Just had all the paper work back from child psychologist & we are still no clearer. He ticks some boxes for ASD, but not others. His socialization skills have been put at an age equivalent of 2.9 years (he is 8.5), the WISC test showed signs of ASD, but he passed the Sally-Ann test & his empathy and ability to read emotions came out as very good, which went against ASD.

Children his age who come to the house tend to play with his younger brother because DS1 never wants to play what they want to play. Unless they want to play playstation games he doesn't want to know. I feel sad that there will come a stage where children just won't bother with him, and there has already been signs of bullying going on with other children in his class.

I find him so hard to really understand. He can be very frustrating & is very hard to reason with.

I am a lone parent & I find it hard to cope at times. It is really really getting me down today & I am feeling very tearful. Sometimes I just don't know how to cope with him.

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TinySocks · 15/04/2008 16:34

Pink, I am so sorry you are having a hard time, I take my hat off to you coping with this as a lone parent.

I don't have many words of wisdom, my DS is only 3.3, but what came to mind after reading your post is that since the child psychologist assessed DS as have socialization skills of a 2.9yr old boy, surely this should be enough reason to provide you with some support and help DS with these issues, whether or not he ticks all the ASD boxes? What have they offered you as follow up in terms of therapy?

bigknickersbigknockers · 15/04/2008 16:49

Hi PC, sorry I dont have any advice to give, just wanted to say sorry your feeling bad. someone with more knowledge than me (thats not hard) should be able to help you soon

Pinkchampagne · 15/04/2008 16:55

We are still waiting for him to see a speech therapist & OT, so may have more of an idea when the assessment process is complete. Been waiting nearly a year for these appts, so will have to chase them up again.

Interpersonal relationships has an age average of 2.4 yrs, play & leisure time - 2.8 yrs, and coping skills - 3.7 yrs.

The conclusion is that the assessment does not allow them to say he has ASD as he does not fall on the spectrum because he has no other element of ASD other than social problems. He is not like other children his age though & it stands out a mile. I know this sounds really horrible, but sometimes I look at other children of his age & so wish he was like them, for him as much as myself.

Having a terrible low day today.

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Pinkchampagne · 15/04/2008 16:56

Hi, BKBK. Good to see your name on here again. Hope all is good with you.

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ancientmiddleagedmum · 15/04/2008 17:01

Did they rules out aspergers too? I do feel for you, you sound like a great caring mum. The Easter holidays don't help either - I am quite looking forward to back to school time for my DD and DS (7 and 5, DS is Asd). A strong cup of tea, a fag and a browse on mumsnet always helps I find, hope there is some equivalent for you to feel better?

tigertiglet · 15/04/2008 17:08

Hello Pinkchampagne, this is my first mn post after lurking for a while, I can't offer any constructive advice but just wanted to let you know you are not alone, my DS's 10.6 and 7.8 are in a similar position to your DS we're waiting for the DX but so far traits of ASD seems to be the consensus from the tests. It is so hard to watch your child struggling with life and feeling like you can't protect them. Is your DS's school able to help with a social skills group and a TA they spend most of their day at school and as this is where it can be hardest for them - it can make a big difference if the class teacher is sympathetic and can support them whilst in class.

Pinkchampagne · 15/04/2008 17:09

She is fairly certain he has a learning difficulty of some sort because of his very poor handwriting skills & his letter & number reversal. His concentration is also very poor, as are his organizational skills. He hand flaps a lot too (often on his chest or shoulders now), and makes lots of silly comments & noises.

I do find school holidays hard going, and I work in a school, so they are the only times I get a break from work!

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TotalChaos · 15/04/2008 17:11

sorry you are going through such a worrying time. hope that "the system" comes through with some proper help soon.

Pinkchampagne · 15/04/2008 17:12

He is involved in a small social skills group, tigertiglet.

It is hard not knowing what is wrong, but knowing your child stands out from the others.
His behaviour is very immature compared to other children his age.

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Pinkchampagne · 15/04/2008 17:22

They have reccomended for him to be engaged with more social & peer group activities, which mum keeps on about too. It is not that easy though, as he really doesn't want to do anything like that. We tried Beavers once & he sat in a corner for the whole hour.
Mum then booked them into swimming lessons & we had major struggles trying to get him there the first day - it was like we were trying to force him to do something really bad.

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tigertiglet · 15/04/2008 17:23

your DS sounds exactly like DS1 and I feel the same it's harder when they are amongst a group of other children and the differences that are easier to cope with at home really show.

Pinkchampagne · 15/04/2008 17:30

They really do, TT, and I sometimes have this horrible feeling that others are looking at him in a "what is wrong with that child" kind of way.

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Peachy · 15/04/2008 17:30

He sounds quite like ds1- who has a dx, but a multiple one (AS/HFA, dyslexia, SPD, additional learning disabilities) which does kinda confuse things and did mean the whole thing was mised for a while.

we have problems getting ds1 to attend social activities too, he's keen on the idea but very quickly gives up and then needs forcing. DH insists he attends swimming regardless of excuses (Nanny lives next to a canal, so we see it as a safety issue) but most things get dropped and its fairly impossible to make him to anything much. The one thing that stuck is a SN rugby team, your local SS should keep a list of SN activities and I think DS1 likes the total lack of pressure and the fact that instead of being always the different one, he just fits in. He's been going 2 years now.

TotalChaos · 15/04/2008 17:31

have you looked into any local ASD support groups? as they may have advice about any suitable social activites available in your area?

Pinkchampagne · 15/04/2008 17:42

I haven't done, TC, as I wasn't sure that he actually had ASD. He ticks nearly all the boxes for dyspraxia, which I know is very similar to AS.

He is a hard child to get motivated to do anything. He shows no excitement in going to places other children would find fun, like the park etc. His head is always lost in some playstation game, even when he isn't playing them!

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Pinkchampagne · 15/04/2008 17:44

We did persevere with the swimming lessons because we felt it was important for him to learn to swim. The first day he refused to get in the water, but he got better by the end of the week (was a weeks intense course), although he was aware all the other children in the group were much younger than him.

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TotalChaos · 15/04/2008 17:48

another thought is whether the uncertainty of these activities bothers him, so whether some form of visual timetable might help. there's some excellent posts by a teacher called gigglewitch on this thread:-

www.mumsnet.com/Talk/2407/512825

bullet123 · 15/04/2008 18:19

Sorry things are difficult for you . Incidentally, did they test his ability to understand emotions by showing him photographs or by observing him in an everyday setting? Ds1 can recognise happy and sad faces in a picture now, but if someone is crying he doesn't understand that they're sad and will often just copy them whilst leaping around the place with a big grin on his face. I can make a logical guess for most facial expressions if I see them in a photograph, but don't pick up on a lot of them in real life.

tigertiglet · 15/04/2008 18:28

maybe it's a case of trying activities out for a few weeks to see if something clicks - DS1 is the most unlikely rugby player but he feels part of the team now - and has calmed down to some extent on the pitch compared to when he first started and was flapping, muttering and bouncing constantly. The rest of the team have accepted him and the familiarity reassures him. Athough he hasn't be dx with asd a local group may be a place where your DS can go where he's not going be judged no one is going to care if he doesn't join in.

Pinkchampagne · 15/04/2008 18:49

They tested DS's emotions using the faces & by asking questions. He is actually very aware of emotions & hates it if he sees me upset. This goes against ASD apparently.

DS has actually shown an interest in the school football club, TT, which surprised me as he has never wanted to do anything like this before. I am not sure whether he will still be as keen nearer the time, but it is a positive sign for him, and I will encourage him if he really wants to do this.

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bullet123 · 15/04/2008 19:56

"He is actually very aware of emotions & hates it if he sees me upset. This goes against ASD apparently"

Not all the time. If someone is just generally upset, or a bit grumpy, or making snide comments, I can miss it so often unless it's specifically pointed out to me. However, if someone is arguing and shouting loudly, or if they are very upsrt and crying, if there is a very highly emotionally charged atmosphere in other words, then - regardless of whether it has owt to do with me or not - I will often start crying.
And there are times when I am upset or stressed at something but am unable to express it, or show I am upset. When I was 8 my dad told me two hours before the coach was due to go that I wasn't going on the Brownie campign trip. I was devastated inside, but if you had seen me you'd have thought I wasn't fussed.

Pinkchampagne · 15/04/2008 20:10

That's interesting, bullet. Do you have ASD?

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bullet123 · 15/04/2008 20:40

Aspergers

Pinkchampagne · 16/04/2008 09:54

The child psychologist has reccomended for DS to have a formal advance assessment of ASD, which could include ADOS. Has anyone got a clue what this is?

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TinySocks · 16/04/2008 16:59

No idea what that is, but bumping for you. Really glad for you that psych is doing something about his findings.