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.

[StarlightMcKenzie]

Free Handwriting OT resource

[StarlightMcKenzie]

Other motor skills OT practise ideas

[StarlightMcKenzie]

Also fantastic for teaching writing skills

[OneInEight]

Parent partnership or Family Support Worker (via Children's Centres) may be able to give you some support or at least tell you where in your locality it might be available from. If nothing else they will provide an ear to chat to. DLA is worth applying for even if you don't need the money as it gives you access to out-of-school clubs and activities. We get loads of fliers for this sort of thing via parent partnership. - the form is daunting but there is a brilliant guide on the cerebra website to help you fill it in for a child with ASD type issues. The NAS and Autism West Midlands (I know this is not your area) we have also found helpful.

[LoveYouDarling]

Zzzzz He doesn't speak at school he just cries, he hasn't been seen by SALT either, I think he would benefit from it. Academically he is not doing well. The school do not say much there are never any meetings with me and them.

I persuaded him to come out with me today, just for a walk. 5 minutes in he wanted to come back as he was "scared"

[Schoolsoutforsummer]

The crying is a form of communication - I am sad just reading this.

What will he be like during the holidays? What will he be like at the end of the seven weeks?

Does he know what he is scared of? Can he read? Does he enjoy books? Does he watch films? What did he do for the rest of today?

[LoveYouDarling]

He will be like he always is, there will be no change.

He isn't really good at answering questions, in the past when we have been out and he has told me he is scared and I've asked him why he usually just says "outside" or "people". He can't read when I put him in bed at night and read him a story he does listen. If I put a film on he won't sit and watch, he isn't much of a television person either as somethings on television upset him.

When we came back, he wanted a bath and pyjamas on then laid himself down on sofa and went to sleep, he is awake now, still won't have anything to eat, but is drinking.

[LoveYouDarling]

Sorry just didn't want to disappear without saying anything. My sons hands have started to swell which can be start of a crisis, so I am having to take him to hospital. Thanks for all the advice you've given me, I will reply back when my son is well again.

[bochead]

Surrey Quays farm was a Godsend when we lived in London. They have several adult (in the 50s!) volunteers on the spectrum, so a mere 7 year old displaying anxiety doesn't faze them at all. They also do a range of really interesting activities every summer. Look it up on google maps as I think it is easily accessible from Wapping.

Another place to try is the Saturday club at the Discovery Centre in Stratford. It's a really nice morning for children with all sorts of disabilities. You are likely to meet other local Mums who can give you some moral & practical support about how to access services, and your son is VERY likely to meet someone a bit older who is just like him. I do think it's important around this age for HFA kids to realise that they are not the only child who faces the difficulties they do - it makes them feel so much less isolated and inferior. You should be able to get there via the DLR from wapping without too much fuss (just a pair of ear defenders).

[Schoolsoutforsummer]

Morning. Hope he is feeling better soon.

bochead - they sound perfect; wish I lived nearer.

[Schoolsoutforsummer]

LYD - how are you both doing?

[LoveYouDarling]

My son has been discharged from hospital, he hasn't fully recovered but he is doing okay thanks for the warm wishes.

Bochead - I know you are trying to help and I appreciate it , I really do. But you have no idea what my child is like when going out and going to new places, it would be a struggle to even get him to leave the house, and I would have to mention that we are going to the "discovery centre" as soon as I mention there will be other people there, he will say he doesn't want to go, he is not good round strangers or things he is unfamiliar with. I am not too sure if you have a child who has ASD and is generally emotion and doesn't want to be alive, I feel as if no one understands what it is like for me, it is so easy for people to say "take him here" or "take him there" when he is just going to get very anxious and upset then I am the one who will have to calm him down when he uncontrollably cries, which makes me want to cry as well.

School is out until September in during the time he is off I refuse to do anything that may upset him or make him anxious, if I was to try what you have suggested bochead? Are you going to be there to pick up the pieces? And I do hope I am not coming across rude or disrespectful.

[Schoolsoutforsummer]

No, you sound terribly sad and very isolated and I am "speaking" as a Mum who was there this time in October. I am glad he is a little better. Do you get support in hospital? - there should be a specialist nurse and DS's notes should flag up his issues to make time in hospital bearable. There is documentation for this - a type of passport.

Have you heard about the Maudsley? - I would go and ask your GP for a referral: take a list of all the things that make life impossible - your son's world-view in particular. I have heard amazing things about their assessment team. LYD - he isn't the only ASD child who feels this level of pain and I remember and recoil from what it did to us as a family unit. These boards are great but RL support and intervention is the only way things are going to change. Oh, and development - the pattern of behaviour does alter as they grow.

[LoveYouDarling]

Schoolsoutforsummer - No I don't get any support regarding my sons health issue the school are not aware of how serious it is. I haven't heard of The Maudsley and my GP isn't helpful at all, every time I go there regarding my son I cry when I get home. It is now the holidays and I want to do fun things with my child like every other mother will be doing, but due to the ASD and his health condition it is impossible, he has woke this morning with a chest pain hopefully it will go away soon,

[Mollyweasley]

Hi loveyoudarling! I have diagnosed ASD and I understand how people and new places can be scary sometimes. However I seem to be very lucky because I get a rush of adrenaline when I go out to new places/people which allows me to feel happy and enjoy myself for a while, even though it leaves me exhausted!
People with ASD are prone to anxiety disorders: for example I have social anxiety.
I wonder if your son has developed other issues that are also due to the fear of being outside rather than just to do with ASD. I think there is something called agoraphobia www.nhs.uk/conditions/agoraphobia/Pages/Introduction.aspx
I know it might be difficult for you to speak to people and professional, but I wonder if you could write an e-mail to either the NAS helpline or the SENCO at your boy's school, even if you just send them a link to this thread. You deserve help and if it is difficult for you to leave the house then help should come to you and should come in a form that is suited to your son. I was never good at asking for help and it took me a long time to figure out that it is ok to write an e-mail to ask for help.

[Schoolsoutforsummer]

Molly - that is genius!

LYD - www.nhs.uk/Livewell/Childrenwithalearningdisability/Pages/Going-into-hospital-with-learning-disability.aspx

The other thing is change GP - we don't go to our assigned one - so,you don't have to even do it officially. There is one who is just lovely. I have been known to cry in the actual appointments!

[LoveYouDarling]

Molly - Yes you are one of the luckily ones, my son isn't. I know you mean well but what you are saying isn't very helpful (that your lucky)

Schoolsoutforsummer - If I was to change GP I would have to explain it over again, I really don't have the time and energy for that. I am just going to deal with My son myself as we have been failed by everyone and I'm tired of fighting.

[Mollyweasley]

school

loveyoudarling i am sorry if that bit was inappropriate, i am sure you will understand i have my own issues when it comes to communication. It wasn't my intention to upset you in anyway. I hope the rest of the post might be useful. I can not think of any other ideas that might be helpful to you and so wish you all the best in your search for a solution.

[Schoolsoutforsummer]

LYD - it is totally draining and very isolating but there are some great ideas on your thread and a lot of concern and support for you. Better than nothing. So, keep posting or lurking if either help.

I hope you and your boy have a good summer, recharge a bit, destress a lot (and this is me thinking of how I was last October - very close to the edge) and can come back and use some of the suggestions here and on other threads to make life better.

[LoveYouDarling]

Hey everyone I tried my son out on a car ride to Westfield Stratford to go to the Lego store to get his birthday presents. I thought it would be okay as when I told him we'd be going to get him some lego he didn't say he wants to stay home like he usually does. Only managed the car park before he got distraught and wanted to get back in the car and go home, I feel really bad he hasn't stopped crying since we got home. He kept on apologising and said that "something is hurting me outside" but wont tell me what.

And what is worrying me he still wont eat, all he has eaten today is an orange segment.

Also I am back in contact with a friend I haven't seen for a couple of months, she said it would be nice if us and her and her daughter spend some the together out this week, she called me this morning saying she pre booked us cinema tickets for on Monday, I never asked her to do this. This is one of the main reasons I prefer it to just be me and my son, it's a lot easier for me to not have any friends.

[LoveYouDarling]

PolterGoose - You don't sound patronising, yes I have explained my sons needs but they don't seem to understand how hard it is for him. I am also abit worried of what he said "something is hurting me outside" he says things but doesn't want to explain.

I have read some of your post regarding your son, I wish I was more like you and able to deal with things as well as you seem to do, instead of letting it depress me.

He is always trying to do his best to be indepdent, but needs help with most things.