Here some suggested organisations that offer expert advice on SN.

Mother of ASD child.

(90 Posts)
LoveYouDarling Sun 06-Jul-14 23:35:46

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.

Schoolsoutforsummer Sun 06-Jul-14 23:50:07

Time to go to your GP and ask for a referral for help. We have had considerable success with CBT for anxiety, self-harming and suicidal thoughts.

Are there any autism groups locally? Here they run some fabulous activities.

Can school recommend a friend to ask home, someone he gets on with when he is there?

It is really tough because to get the support in RL you have to be proactive but it makes such a difference when you have that network.

If you can post on here, it is a similar step to picking up the phone - to your GP, to your local autism group, to NAS, to the school. You clearly want to change things, small steps .... and then, come back and tell us how things are getting on.

thornrose Sun 06-Jul-14 23:57:47

Hi there, I have a daughter with Aspergers and she often says similar things, it's heart breaking isn't it?

I'm off to bed now but I hope you keep on talking here, it really helps. I'll check this thread tomorrow and try to tell you what worked for dd at that age.

LoveYouDarling Mon 07-Jul-14 06:20:45

Schoolsoutforsummer - Thanks for replying I really appreciate it, I'm not too sure if there are any autism groups locally. He doesn't have any friends at school he will not speak to anyone sad and is always teary eyed when he is there.

Thornrose - Yes it is very heart breaking, he deserves a better mum and also a supportive dad. I am going to try and persuade him to attend school today I just can't bare to see him cry. There are so much other problems I am facing with him, the not eating, going to bed really early. He does a lot of things that other parents would class as bad behaviour but he does it because he is scared.

hattytheherald Mon 07-Jul-14 07:25:35

Loveyou, your son's lucky to have such an understanding mum as you. Please have a look at what groups may be near you. Our local children's centre runs a support group for parents (any age children) or is there a local nas group near you? its worth going to your gp to ask for some help too. In addition to your issues you are also his carer so they may be able to offer help.
Keep posting here as well, they're a great bunch of people with lots of useful advice

Schoolsoutforsummer Mon 07-Jul-14 07:35:09

But he has got you and you understand - that is a good Mum. Like all of us, it is a struggle and that is why we need input, support, others who understand and have been there.

If you don't feel you can change him right now, focus on getting yourself support. Type in autism and your local area into google and see if anything comes up. Ask the school for a meeting? Ask them what they can recommend? Ask them to introduce you to another parent who has had/has similar issues?

Or, start from an interest angle - what does he like? Can he do one-to-one sessions with someone? Swimming has worked really well for us.

What have you got planned for summer? Sit with him and plan things you will like doing? Legoland with exit passes is awesome - make sure you get a deal though.

LoveYouDarling Mon 07-Jul-14 08:13:49

Schoolsoutforsummer - He doesn't really like anything, swimming has been suggested before, he would never do one to one sessions with an instructor.

I have nothing planned for the summer, he breaks up this Thursday also He loves lego but I could never persuade him to let me take him to Legoland, it wouldn't be ideal for him due to lots of people and unfamiliar sounds, it would be so much for him to deal with. It was his birthday a few days ago, I couldn't get him any presents before hand because he doesn't like surprises and I can't get him to sit at the computer with me so he can choose some gifts sad

He has got a temperature this morning, hopefully this is not the start of a sickle cell crisis.

Hattytheherald - Thanks, I am going to do a search now.

Schoolsoutforsummer Mon 07-Jul-14 10:34:50

I suspect I am going to teach you to suck eggs ..... has he tried going out with noise-cancelling ear protection? Or an ipod? Does it help? Do photos showing him what is going to happen reduce his anxiety?

Try printing stuff off the computer and leaving it round if he can't sit with you.

Would one-to-one with you and an instructor work? Could you hire a very small pool - just for yourselves. We went on holiday one year and they portioned out their indoor pool - you booked slots and got it totally to yourself.

Hope he is feeling better soon and you have some small breakthrough - it only takes one good thing to make a difference.

OneInEight Mon 07-Jul-14 12:25:17

I wonder whether it is worth asking social services for help as it does seem you need some outside help. I know some people hate the idea but they have provided us some help with the boys in the form of a "buddy" which has been a better intervention for ds2 then all the useless CAMHS appointments when he was very depressed. It took several sessions for ds2 to begin to trust the "buddy" but luckily he was prepared to be very patient and ds2 will now play with him.

It also sounds school is not meeting his needs if they are having to ring you up regularly. It may be specialist but seems to be not specialist enough. Are there any others in the area that might be suitable. I know when ds1's needs began to be met at school his mood and behaviour improved a lot at home.

LoveYouDarling Mon 07-Jul-14 15:31:08

Schoolsoutforsummer - Noise cancelling devices have never been suggested to me, and he isn't really a fan of trying new things.

I don't think the whole swimming situation would work, just like me taking him on holiday he will be anxious and on edge the whole time so he wouldn't get to enjoy it.

His temperature has gone down a little, he is drinking but is refusing food (we are under the food clinic)

OneInEight - Really don't want to contact social services as they may see this as me not coping

PolterGoose Mon 07-Jul-14 16:03:40

Hello Darling smile welcome, glad ds's temp has gone down. It sounds very hard for you,

Have you spoken to your local ASD team? Ours is very good here, though I too have a hermit-like child, so we can't take advantage of what's on offer. I managed to get my ds out the house 4 times last summer holiday, I'm hoping this year is better.

What sort of bit of the country are you in, someone might be nearby or know of local support.

I don't think I'm alone in finding These SN boards a bit of a sanctuary because my real life is very isolated. We have a virtual pub on the SN chat board, look for the most recent thread with Goose and Carrot in the title wine

Other people know more about the school thing than me, but it sounds like it's the wrong school of they keep sending him home and he doesn't want to go.

Schoolsoutforsummer Mon 07-Jul-14 16:09:15

Going off on a tangent - has he ever seemed happy? Content? Had a period when he was OK? What do you like doing together?

Has he been seen by an OT specialising in sensory disorders? Sensory overload could underpin an awful lot of unhappiness.

Does he like gaming? Yes, I know 7 is young but I went to an ipad training session and they showed how ipads can promote communication in toddlers! I think I would be going with the anything-that-works-approach that gives his life meaning. Xbox is awesome; as is the wii-U and no, I play all of them really badly. My boys, on the other hand, ....

I love the idea of a buddy-system - does anyone know of one that doesn't involve SW? Does his school have one? I think OneinEight is right, it is time to review if this is the right school - a wrong one can be damaging.

LoveYouDarling Mon 07-Jul-14 16:10:33

Hello PolterGoose - I am not in touch with any services that can help me, I fact I am not in touch with anyone, It feels like I have to tackle this myself. I live in London, I am going to going to search the thread now thanks smile

Yes it is wrong that they keep on sending him home he has only just turned 7 and he does get very distressed quietly easily which I am guessing they can't handle.

LoveYouDarling Mon 07-Jul-14 16:20:06

Schoolsoutforsummer - There hasn't been a time when he has seemed happy, I haven't seen him smile for years, he likes doing things alone, he gets upset when he can't do things himself, such as tie his shoe laces, button up his clothes and zips he has very shaky hands, isn't steady with a pencil.

Hasn't been seen by OT. As for gaming he doesn't have any games consoles he has an iPad which he has never used. The school he attends doesn't have a buddy system.

PolterGoose Mon 07-Jul-14 16:29:03

It sounds like both him and you have been horribly failed sad angry

There are definitely other regulars here who are in or around London, you might want to think about starting a thread headed something like 'can anyone in London help me get support for my ds with ASD?'

Is it just you and him at home? Does he have any pets?

LoveYouDarling Mon 07-Jul-14 16:33:43

PolterGoose - I am crying out for help, yes it is just me and him at home, dad just doesn't want to know. No pets either was thinking goldfish possibly?

PolterGoose Mon 07-Jul-14 16:37:15

I wouldn't bother with a goldfish to be honest. Our latest cat has been fab for my ds, but I know not everyone can have one. Alternatively, I'd look at rats or guinea pigs for ease and friendliness/cuddling smile

Mine is trying to convince me to have land hermit crabs...

Where in London are you?

You HAVE been failed. Is he your only child?

Are his hands shakey because of his SCA?

Specialist school sounds shite. Why are you asked to collect him?

I'm lucky my children are alive quite frankly and so I wouldn't risk having pets but rats are excellent, fun and friendly. Cats are pretty good too, especially if they are semi-wild and look after themselves now and then.

LoveYouDarling Mon 07-Jul-14 16:56:26

StarlightMckenzie - We live in East London (Wapping) yes he is my only child, shaky hands are due to nerves. The reason I am told to collect him is because he is "too distressed to be taught"

Schoolsoutforsummer Tue 08-Jul-14 06:22:37

We have a chihuahua - got for DS2 after psychiatrist appointment. Other friends have a greyhound - same reasons. There is actually a charity that provide dogs for children with autism. The dog gives us all joy, not just DS2. Definitely recommend it.

Practically, are you in receipt of DLA? Do you work? I am mentally going through benefits - Family fund? The problem with all of them, is you need to be in the right mental space to apply i.e. have energy and a vision. But, they all help.

Do you use his ipad? I think that might be the way in. YouTube generation here - I read and they watch. There are drawing aps, silly game ones, funny ones - does your DS have a visual sense of humour - free ones, and there are ones for and about kids with autism. Does he know anyone like himself? In RL, do you have anyone who understands what it is like for you?

Given the school are sending him home, there is a record of his distress, so can you ask them to help you address it. He deserves an OT assessment - DS2 still can't open things. You should see him draw! What about your DS - does he like drawing? Colouring?

When does he break up for summer?

LoveYouDarling Tue 08-Jul-14 06:53:02

Schoolsoutforsummer - I don't claim DLA for my son in fact I don't claim nah money at all for him, I don't work either luckily I am financially stable. Yes I use his ipad. Does he know anyone like himself? Well he believes that he is different from everyone else. As for drawing and writing he isn't good with a pen, he can't write his name yet. He breaks up for summer on Thursday.

Schoolsoutforsummer Tue 08-Jul-14 07:27:08

He is probably entitled to DLA - have a look. It means you could look and find him therapists, and the right ones would make a difference to him and so, to you, too.

It is good he is self-aware but the fact is, there are lots of kids like him and knowing that is vital for his well-being.

Definitely ask the school/GP for an OT assessment.

Does he like water? DS2 can and does spend hours in the bath. Swings? We have a hammock and that sideways movement is very soothing. Do you build lego with him?

Really do what Polter suggested, start a new thread for the summer and for ideas in London and also therapists there that have helped others.

LoveYouDarling Tue 08-Jul-14 07:51:04

Me getting him in the bath isn't a problem, I think he knows it's essential he asks for a bath. He drinks a hell of a lot of water (not bath water) not too sure if he likes swings, yes we build lego together.

zzzzz Tue 08-Jul-14 08:17:37

We'll you've found a great place. grin. Welcome.

My ds is home full time. I don't have time to post now but wanted to mark my place.

I know you say swimming won't work (ds was home for 2 years before I started), but what do you think he might like?

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