Mother of ASD child.

[LoveYouDarling]

Hello,

I am pretty new here, I was recommended this site by someone I know. I am not good with typing things up and also expressing myself. I have a son age 7 who has ASD he has no confidence what so ever it is really hard to get him out if the house so he misses school a lot, he prefers things just to be me and him.

He has recently been saying "I just want to die I don't like it here anymore" and to add he also suffers from sickle cell anemia, and I myself also suffer from depression and anxiety it has got to a stage where I feel as I am failing him, I just don't know what to do. I have kept in asking myself throughout the day why has this happened to my child.

On the odd chance when I do manage to persuade him to come out of a walk to the local park he just watches all the other children play, he doesn't have any friends his reason for not interacting with his peers is "I'm not good enough to be their friends"

I don't know how anyone on here can help me, maybe I just needed to write this and post it, as I don't have any friends in real life and I'm also not getting any support, my son does attend a specialist school but he dislikes going, and I always get the phone call telling me to go and get him, which is very unprofessional.

PolterGoose - Can I ask what it is that you find hard?

I find it hard not being able to take my sons pain away from him when he is il and also she he is scared and upset I do assure him that I am here for him and everything is going to be alright but I feel as if he doesn't believe me.

Thanks for telling me. He sounds lovely :)

Hello

Popping in again, I've had a few bad days with DS he has been so upset and crying continuously he just won't tell me what's wrong.

Yes he has, I don't think this is school related because he doesn't like school.

DS has had another bad day today, not coping very well!

A number of things.

He is not eating
Very miserable & not wanting me to touch him, he doesn't want any hugs.
I feel as if he is irritated by me, this morning I suggested me and him build some lego together, he left the front room minutes later I found him in his bedroom attempting to build it himself, I did manage to get him to come to the shop with me this afternoon he usually holds my hand with no problem, today he was very reluctant. Right now he is standing next to the window looking out, he has been in the same spot for over an hour.

So sorry to hear about that loveyoudarling It can be so difficult when all we want to do is help them and our kids can't communicate what the problem is. You are being a very good mum, you are sensitive to his needs and trying to give him whatever he needs most. My DS also has an ASD but he is very different from yours, so no practical advice or suggestions I'm afraid. Just another welcome here. And don't forget to take care of yourself too.

Try and not take it personally - easier said than done I know. ds2 does similar and will often walk out of a room when someone else enters it. dh in particular finds it very hurtful but it is just because ds2 finds people very stressful and even one extra member can be too much to bear. On bad days he will take his dinner to his bedroom to eat and won't come out all day.

The going to a shop is definitely a positive thing at one stage ds2 could not even manage this. He was on reduced school hours for a bit and we worked on this then taking the opportunity to go out when it was very quiet. I used to choose just one item to purchase and one shop to visit.
Gradually, he has improved and he has managed a cycle ride, a couple of museums and even a restaurant in the past few weekends so it can improve. We often have backward steps making you feel like no progress has been made but we definitely have.

We have found tiny steps work best with ds2 and trying too much often leads to a setback.

Kleinz. Thanks, just really upset as it is the summer holidays and we can't do anything fun outside together, I'd love to take him abroad but I don't think he'd be able to manage it.

PolterGoose. He doesn't have any interests he just likes to play with Lego and there isn't anything he is looking forward to, I wish there was but there isn't.

OneInEight. Thanks, you must be glad and so proud that your son has improved, mine doesn't have good balance so I don't ever think he will be able to ride a bike, I bought him a micro scooter a few weeks back, he did try and ride it but struggled a lot he kept on falling off, he then asked me to give it away, he has never been to a museum, I'd love to take him but it would he too much for him as he doesn't like certain sounds, and he'd never eat in a restaurant as it's a struggle to get him to eat at home.

I also need to get him assessed for OCD but I don't know who to approach.

I honestly think you should consider getting a games consul such as x-box.Others may disagree but this is what my ds ,14 ASD,lives for and yes we have to restrict it etc but he connects now with others online and I couldn't imagine what he would be like without this outlet.When he gets in from school its like a pressure valve being released as he shouts playing an action game and lets off steam that way.
It is truly the one interest most boys with ASD seem to enjoy the most from what I read on here and other sites also.
Its weird because these games whether action/adventure/sci fi/minecraft or whatever can often be loud/noisy/flashing images etc-all the things which our kids with ASD cannot cope with but for some reason the medium of computer games just seems to make them all tick.
That is my opinion anyway.
As regards assessments for OCD the GP is your first stop for a referral and please change GP....a different GP will possibly make all the difference.

I forgot to add that ds was diagnosed at 9 and has played computer games since he was 7/8 so you may find this outlet will really help your ds.Minecraft may be ideal for him if he likes lego and building/creating things.

BananaBalls. Have you read the whole of this thread? A games console wouldn't be idea for him, he isn't a huge fan of television, so a games console would be inappropriate, my sons needs are very different from yours, however I appreciate you trying to help.

Sorry OP,I didn't mean to upset you !Yes ,I did read the whole thread. Hope you find a solution .

LYD - I am so very sad reading this thread, for you and your ds - as you are both dealing with a double-whammy - ASD and sickle-cell.

Ok, now all I can add is some suggestions based on what I have read so far:

Firstly, ASD contains the word Spectrum which I translate to differences within a similarity, so my suggestions are based on what I recognize as being similar to my own ds.

Yes, it seems that 7 is about the most difficult time - and it also seems that this is the age when you need to actively engage and seek outside help:

ASD - you need to get a referral to your GP to CAMHS, and take it from there - I have found them to be very supportive and helpful, although I recognize others haven't so much.

School - contact your local Parent Partnership first, they are funded by your Local Authority but give independent advice and can be helpful. Your ds and his situation with school absolutely needs to and can be addressed. This is no easy task and can be often the most difficult thing for parents to sort through but you need to do this.
As soon as you can - based on what you have learned through the Summer - make an appointment with the Senco at the school.

Interests - Lego and doing things on his own - this strikes a chord with me, as many upthread have said, computer games have been a saviour and this is true with my ds (now 12). You have said that these are no good for your ds but you could try getting a handheld console like a Nintendo DS or PSP and leave it charged and loaded with a Lego game placed somewhere casually (perhaps his bedroom?) and just leave it there. Left on his own he may pick it up and give it a go.

Window Staring - he might be deeply concentrating on something he sees interesting out there. My son liked the birds in the trees.

DLA - even if you don't need the money it is useful because if you get the middle-rate (which many with ASD do) you gain access to charitable/independent/local services that you wouldn't otherwise. It is a very difficult form and everyone needs help filling it in for the first time so search online for your nearest source of assistance with this - possibly your local National Autistic Society or Citizens Advice - it's different from place to place.

It is very isolating and difficult, you have done so well to get as far as you have done without support and are a fantastic mother, but you are going to need some support. It does get better although there will always be bad days. You are not alone. We are here (although I'm posting and going).

FloatIsRecharged He is being very clingy today he is sat next to me as I am writing this, I prefer him being this way instead of being distant, I am going to show him all the different games consoles on amazon after I've finished typing this I'll be over joyed if he picks one.

How do I go about getting DLA I have heard of it but never really looked more into it.

Thanks PolterGoose, I just want to know would I still be entitled to DLA as I don't claim anything for my son at the moment, no child benefit or tax credit?

I would say don't simply just show him a games consul...they will mean nothing to him unless he experiences it for himself.Is there any friend of yours who has one and maybe he could have a go on it or suchlike?
I honestly don't think browsing the minefield of consuls/games etc will do anything for him.
I do however think they can be an invaluable tool for kids with Asd.I know my lad would be bereft without his.It gives him an interest and a focus and is great for helping him let off steam/unwind.
I also feel you have been failed dreadfully by your school and GP.You absolutely need some support and soon.Go back to your GP or see a different one if needbe. You need referrals for support services asap .
It will get better so please stay positive and stay posting here.It is a great help.
Good luck OP .

It’s so sad for you and for him, but I’m sure you’re right, your DS wouldn’t cope with a holiday abroad yet. Given how much he has to deal with compared to other kids, ASC anxiety and physical illness too, even the little moments of calm and happiness and enjoyment you can both have in your days will make the biggest difference to him. And you are making sure he gets some of them.

Speaking personally (and I know our kids are very different) my DS also got a lot out of having a games console. And he gets very stressed by choosing things, so either he knew exactly what he wanted already (usually because someone else had it at school) or else I always had to choose things for him. He wouldn’t go into a toy shop or look at toys online at all. Then he got into Pokemon cards and somehow he would go in to look for the Pokemon cards he wanted, he could find the cards and we’d pay and get right out. Now he will look around at games in a computer-games shop, and he can spend ages researching online to decide what gadgets he wants. Over the years (he's 16 now!) one thing kind of led to another Kids vary so much though.