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Not coping with my child having autism

(32 Posts)
Imaginosity Sun 24-Apr-16 19:41:10

I wonder how abnormal I am. DS was diagnosed a year ago and it still breaks my heart. He has high functioning autism. He's happy in himself and getting on ok at school. He's doing quite well with his work. He needs help to regulate himself. He is prone to tantrums but they seem to be largely under control at school.

I just feel like I'm on an emotional rollercoaster. On the days where DS is engaged and interacts I'm on top of the world and think maybe things won't be so bad and he'll find some friends and won't end up lonely.

Then there are days like today where I come home and get into bed and cry. We met some friends of mine and their children. I felt really lonely even though I was in company.

Two of the little boys were running about laughing and playing the whole time. DS joined in for a short time depending on what they were doing - but mostly was content to play alone with the boy's toys.

The other parents didn't understand that this broke my heart - they said 'isn't it great how he plays quietly with the toys' - I was thinking 'no it's not great - it's a sign of the autism - and a sign that he's not fitting in with the others - and will struggle to make friends'. sad

The other little boys are doing football, swimming, tennis classes etc. We can't do any of these group activities (I have tried). We will have to do individual classes.

All the parents seem to meet at the football etc and get to know each other. I feel like I'm on the outside because DS is on the outside. I wish I could make connections with the other parents as it might help DS a bit. But I can't get to know them as we can't go to the activities.

The other parents today were talking about what summer camps to sign their children up for. They didn't bother asking me as they assume DS won't be going. I just feel left out of the conversation and left out of everything.

All the children engage on a level DS doesn't. He can engage with them at times when he's really interested.

I worry will anyone come to his party next year - he says he'll invite all his friends from school but I know they are not really his friends as such. He names particular children as his friends - the children of my friends. I can't see any connection between him and them - they don't seem to notice him and he's happy to do his own thing and only occasionally interact - this is despite knowing them and meeting them for a few years.

I feel lonely myself because I don't have much friends and the fact that DS can't interact makes me more isolated. I feel like it's a cycle - I've passed on my poor social skills to DS. I know what's it like to be lonely and the one thing I hoped for DS was that he'd have friends.

DS has excellent social skills with his little brother and with certain children he can be very interactive. This is my only source of hope for the future. Sometimes I think at least he can hang out with DS2 no matter what happens.

I should be thankful that DS is happy so far but I don't want him to be content to be alone. I want him to have a small group of friends and maybe find someone in the future who he loves and have a family. Maybe I have to accept he'll be alone.

I feel like this has take the joy out of parenting. I have a younger DS starting school next year - DS2 is very sociable and I could bring him to football and do playdates but I almost feel like not bothering as I'm sick of the whole thing. I feel like just going to work (which I enjoy) and DS2 will be ok in the end whether I make an effort or not.

Imaginosity Sun 24-Apr-16 19:43:38

DS1 is 6 by the way.

shazzarooney99 Sun 24-Apr-16 20:09:08

Can i ask why your son cant go to football and stuff? i take my son and he has meltdowns,ijust explain when he starts club that meltdowns may occur and im totally honest from the start, i always explain to the other parents too, theres nothing to stop you talking to the other parents at school and tell them about your wonderful child you will be surpised how understanding many people are. xxx

sh77 Sun 24-Apr-16 20:11:55

Ahhh this could have been written by me word for word. You summed up how I feel so perfectly. DS is 5 and we are facing very similar issues. My feelings are closely linked to how he has been. There are days when I think I made a mistake getting a diagnosis but then on others it hits me hard. Today, ds refused to get on a tube. He was crying and hitting. He couldn't tell me why but I think it was because a dog got on (he's petrified of them). I asked him at bedtime why he got upset and he didn't know. I see some things getting better but other things getting worse.

DS won't go to groups as his anxiety goes through the roof. He will cling to me. He doesn't get invited to many play dates. I spent 2 terms being friendly with parents but nobody invites him. I'm not going to bother this term.

DS loves to play by himself with his toys. He's incredibly creative, focused and really perseveres. These are wonderful qualities.

I wish I had a friend in RL who I could share the journey with as it's so very lonely.

PolterGoose Sun 24-Apr-16 20:18:29

You need to find a way to stop measuring him by the wrong set of standards, if you keep measuring against his typically developing peers he will always disappoint you.

You might find it helpful to read stuff by autistic adults. Rosie King's TED Talk is particularly inspirational.

Imaginosity Sun 24-Apr-16 20:42:04

sh77 - my DS sounds a bit like yours. When we came home this evening he was so focused on making a hang-glider - with bits of paper and his kite and glue. Completely engrossed and content. I'm fortunate that he's quite confident but I have to watch him closely as he's a bit too good at standing up for himself when he feels under threat and if people don't understand what happened it might look like DS started a fight.

It's so hard when the other parents at the school gate are making plans for play dates - just so carefree and not at all appreciating how very fortunate their children are to have the social skills that allow them to do this. Sometimes i feel a bit annoyed that they don't include us even though I've tried to be friendly and to suggest meet ups. I know they don't have to have anything to do with us but I suppose I just feel angry at the whole situation. I feel like I've been cheated out of the normal parent experience and DS has been cheated out of having a more easy life. I almost feel annoyed at the others for taking their 'normal children for granted'.

When DS2 starts in school if I notice any children with problems in his class I'll try to be inclusive and friendly.

I met a women at a speech and language session who has a DS quite similar to mine and we meet up now. It's nice to have someone who understands how I feel - I don't have to put on a happy face and pretend everything is going great. Also our DS's seem to engage as they are on a similar wavelength - more into imaginative games rather than sport. When I meet other friends I feel I have to be careful what I say and not sound too sad about DS in case my depressing talk puts them off.

I also joined an autism support group but I found a lot of the parents have children with much more severe issues than my DS and I felt like I didn't fit in there either. I actually left it feeling quite depressed. One mother there asked me about what issues my DS had and when I told her, her attitude seemed to be 'what do you have to worry about, at least your child is talking and is in mainstream school'.

I then found a support group for dyspraxia and i feel more at home there. The parents seem to have similar issues to what I have. I feel a bit of a fraud as DS is not diagnosed as having dyspraxia - but he does have motor problems associated with autism so shares things in common with people with dyspraxia.

It's weird because if I stay away from people and do my own thing these days I feel slightly less sad and isolated. If I meet up with people or collect DS from school I'm faced with the reality.

Imaginosity Sun 24-Apr-16 20:53:08

Thanks poulter I will watch that.

I know I need to accept him for who he is. I think I find it difficult because I have low self esteem myself due to struggling for years socially. Only in the last few years I've become more outgoing. I remember being quite alone at school. I had people I had lunch with but they weren't really my friends. Maybe because I feel like I know what DS might be facing it's harder to come to terms with.

There must be other children in this area who DS could be friends with at least by the time he gets to secondary school. There's about 300 children age 6 over the 3 schools in this town - so surely among them there's someone who could be DS's friend (I hope).

Imaginosity Sun 24-Apr-16 20:56:32

shazz Maybe I'm just not confident enough to join activities and to deal with DS getting angry in front of everyone. It ends up with him not being able to calm down and me leaving early - embarrassed and upset. I tried karate but I couldn't handle the other kids looking at him like he was weird.

PolterGoose Sun 24-Apr-16 21:05:50

It really does sound though, from everything you've written, as if he's quite happy in his own company. For him friendship might have a different meaning but it's no less valid. It sounds like he consider that children he feels comfortable to share space with and interact a little on his terms are his friends. That's ok.

It's taken my ds until Y8 to really develop friendships where he's liked and part of the group just for being himself, he's part of a ragtag bunch of weirdos (his word) who hang out at school, but he's got no interest in seeing them out of school, that's his time to do his things.

Your ds is still only little, he will amaze and surprise you, and you'll have his back and support and encourage him.

PolterGoose Sun 24-Apr-16 21:07:24

If he's getting angry as a result of anxiety, don't do it, it's not worth it, do what he enjoys, school is enough of a challenge for our children, home needs to be easy.

OrlandaFuriosa Sun 24-Apr-16 21:14:31

Have a think about something like karate. It's about individual attainment, control, not team behaviour. It's v v good for patterning the brain so that you are balanced, coordinated, which a lot of HFA people have problems with. Starting him at this point would mean he could get some of that under his belt before secondary school. And when you work with others, it's normally in pairs and the teacher will choose. If you explain to the teacher, eg about meltdowns, they will understand. Means he would socialise without that awful joining in process.

One of the best things we ever did for DS.

OrlandaFuriosa Sun 24-Apr-16 21:16:25

And birthday parties are so much better if you say he can gave two or three friends. And you do something. That way it's less hurtful when he isn't invited...

OrlandaFuriosa Sun 24-Apr-16 21:17:58

Ah, sorry, cross posted, see you tried karate.

knittingwithnettles Sun 24-Apr-16 21:18:13

just to counter Shazz's suggestion - both my sons (one with dyspraxia and one with HFA) couldn't manage sports classes, or activities or camps until they were much older. Football suddenly became a hit at about 9 years old, before that, a disaster, they couldn't cope with the group, motor skills etc. [swimming was much better though - although they still aren't much good at it style wise) Ds2 loves drama class now at 13/14. Ds1 took a long time to take to a choir and joined one only at 8, now is an amazing singer, although very shy.

I think a lot of mums are really quite competitive about all the extra curricular activities. He is 6. There is plenty of time for all that later. My daughter (who is NT) used to cry when I tried to take her to ballet, she eventually dropped out, but loves to dance in classes now.

Making a glider sounds fantastic - neither of my sons would have managed that. It's hard to adjust but as there will be compensations. And your confidence in him will make things better for him.

I was never very sociable as a child, but looking back I did lots of lovely things with my free time (the time when I wasn't socialising I mean) crafts, cookery and reading, playing outdoors. Then I made lots of friends later at secondary. Still not that socially confident but your son can find happiness on his own terms.

thanks

knittingwithnettles Sun 24-Apr-16 21:20:55

Fwiw, I found earlier on the classes were far more judgemental, I think kids are conditioned to really notice the odd ones out, possibly because only the really bumptious sociable "obedient" children attend those classes in the first place!

knittingwithnettles Sun 24-Apr-16 21:27:18

I wouldn't feel a fraud in the dyspraxia group either...dyspraxia can be about social communication/shyness - the conditions are often co-morbid.

I met a lady whose little one had cerebral palsy and global delay recently, and despite ds2 having an OT report recently recommending lots of interventions, I found myself feeling a fraud for even thinking he had problems, in comparison, after all he can run, jump, swim, talk brilliantly. It can be a positive reflection of course, but knowing you are better off than some people doesn't give you the chance to express your own fears and worries. Which of course are important to YOU.

It's a bit like if one of us were to go on the 11plus threads and denounce all those parents who worry about exam results (my son couldn't even get a 4 in the Spag part of the KS2 SATs) Of course they are entitled to worry, that is their reality.

Have a good week!

MrsBobDylan Sun 24-Apr-16 21:31:36

I think what you describe isn't unusual - you are still coming to terms with your son's diagnosis and grieving for what you feel you've lost.

Keep going meeting up with your friends, even though it's filling you with sorrow right now. Eventually, you'll adjust and life will assume some kind of normality and meeting up with friends will be fun again.

Also remember that when your son is playing alone it's because he's engaged and concentrating on what he enjoys. He's probably quite content.

I have been though similar - I can remember sobbing sat outside my son's nursery, sobbing in the car on the way to work and sobbing on the drive home again.

It will get easier. 4 years down the line for me there's still lots of challenges, but they take a back seat to the relationship I have with my son and the absolute joy he brings to me.

I did seek counselling for two years which despite not really having the money, I paid for. I found it fantastically helpful.flowers

Imaginosity Sun 24-Apr-16 21:50:13

In many ways I think there's no rush starting him in a class at 6 - but i feel under pressure when his 6 yr old friend is doing football, rugby, swimming, gymnastics, tennis and maybe music - and possibly also other things. That boys mum is a SAHM and enjoys taking him to classes - but I almost feel like my DS is missing out just playing at home with his brother.

DS loved karate but I didn't like the class as it was a larger group and a mix of all ages. One day - the second day we went - DS had to do a warm up run. For some reason he thought it was a race that he had lost and started crying. All the parents were sitting in chairs at the edge watching and I felt under pressure trying to calm him down in the echoy hall. Then DS was put in a group to do relays - he was put in with older children - and they were not impressed to have this 6 yr old who looked a bit all over the place on their team. DS did something wrong in the relay and the parent next to me laughed quietly. He didn't know this was a really big deal for me and DS - it was just something funny for him. When things like this happen I'm often trying to fight back tears. I wish I was stronger because DS needs someone who is strong. I had explained to the karate people about DS but it didn't really help. When I saw the signs that DS was getting upset I'd try to approach him to nip it in the bud but the teachers discouraged me as they said they could deal with it and had dealt with similar children before. But they don't know how to deal with my particular child. I could see little things in their approach that might inflame him. So I left and didn't go back.

Maybe when DS2 states karate in a year or two then DS1 might be a bit more emotionally mature and might be able to go to the class with DS2. At least he'd have someone to pair up with and to watch out for him.

lamya190 Sun 24-Apr-16 21:57:31

Hi OP,

I feel exactly the same my son is in reception and academically from the top in his class, he has HF ASD. His social skills are improving lots too I have put him into private social skills group too which he has benefitted from incredibly!!

The feelings u describe are what we all go through some days I feel maybe the diagnosis was wrong other days I feel it's so obvious. I too feel I have been overly friendly with the other parents I threw him a big birthday party invited 20 kids from his class and we were invited back and had been invited before his birthday party. The sad thing is I can throw play dates arrange parties etc for him now as he's still young and I get on with the mums but he's soon gonna have to start making his own friends and I'm not sure how that will pan out! Like what a friend always tells me, kids are mean!!

I guess we all have to get on with it, it's really sad at times and even thinking of the future etc is upsetting but let's think of the improvements our kids are making and try to build on them! I am shocked at how much progress my son has made since last yr!

Imaginosity Sun 24-Apr-16 22:05:14

My DS has made huge progress too compared to last year. After meeting the teacher last year I came away with a list of what seemed like endless issues. This year - thanks to lots of help we and the school have given him - this years meeting was much more positive. He's not hurting people in the yard now, they've done things to improve his attention, he actually does the school work most of the time, he's really good at reading and has a good grasp of the maths. He only occasionally gets angry at school - last year I was getting calls from the school a good few times to let me know about 'incidents'. The main issue now is poor social skills. He often plays alone sad

lamya190 Sun 24-Apr-16 22:10:37

I once read about a buddying system on the NAS website could school possibly implement that? Or my speech therapist mentioned that some schools set up social skills groups at school too

Imaginosity Sun 24-Apr-16 22:18:21

They tried doing buddy groups in the yard and DS talked really positively about them - but the teacher said he tended to drift off from them.

Then I think what's the point forcing it and pushing DS when he seems to want to do his own thing. Ultimately in the end we'll have the same result - like when he's a teenager I don't think it will make a difference one way or the other if I push the buddy groups and play dates at age 6 - because what's going to happen will happen - and he'll find his own natural social level - even if it's a low level.

MeirAya Sun 24-Apr-16 23:16:16

Imaginosity he sounds like DS1. Nursery was ok cos he could mix with the younger dc, and stick to his preferred themes and parallel play.

But the early years of primary were awful - basically because he wasn't ready for 5-8y olds' style friendship.

By KS2 friendships were starting to improve- we cultured family friendships, and he tagged along with those. Mixed age groups were much better- he could play with younger or older dc better- I think their expectations were more flexible. Also our dc2 ended up being close friends with a few dc who had big sibs in ds1's class, which helped too.

And Beavers was good. Amazing progress, and they positively welcomed dc with SEN (this was possibly facilitated via their past experience that the SEN parents tend to volunteer for everything grin)

Imaginosity Sun 24-Apr-16 23:34:11

That's positive meir

I'm hoping having DS2 will help DS1. They get on very well and DS1 interacts so well with DS2. They would be chatting and playing all day. I sometimes think how can DS1 be so normal with DS2 but switch off with classmates.

DS2 will be able to go out on the street soon playing with DS1 and I'm hoping he'll help to integrate DS1 a bit more. DS2 is very sociable - it's kind of amazing to see. He connects with children of all ages and seems to attract others. Other children seem to find him funny and gravitate towards him. He loves DS1 and brings out the best in him.

I known should volunteer for the scouts but I feel a bit nervous In case it doesn't work out and I'm disappointed again. I might wait till next year when DS2 could go too.

Bananasinpyjamas1 Mon 25-Apr-16 13:08:08

Imagin I do sympathise. It is really hard. I'm only at the start of this, my DS is 3 and severe. I'm constantly reminded wherever I go that my child is different. Really different. It's very hard to come to terms with, and other people's children behaving normally can be bittersweet.

I hope that this doens't sound harsh, but I would be so happy if my son turns out to be anything like yours! There is so much your child can do, he can go to school, he can tolerate being around others, he is high functioning, he can sometimes interact and also can get enjoyment out of his own activities. I'm not saying this to make you feel that - oh I'm so much worse than you so stop complaining! My point is, there is always a comparison. If you let yourself get pulled into the difficulties, dragged down, then you will miss out on the fact that you have a gorgeous, lovely son.

My son can hardly talk, screams most of the day and when I tried to take him to toddler groups he started to pull his hair out. And yet he is also an incredible little boy. We have to put ourselves in their heads. What do they need help with? Does your boy need a little help socially? If so how? I think your remarks on 'I feel a bit nervous in case it doens't work out and I'm disappointed again'. If this is right for your son, it doens't matter if you try and it fails.

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