Here are some suggested organisations that offer expert advice on SN.
Think I'm having a bit of a breakdown(11 Posts)
I posted back in Jan when my DS (then 3) had just had a private dx of ASD and we were waiting to go through the NHS dx. I really thought I had come to terms with it and got some good advice on here but I did exactly what everyone told me not to and got completely overwhelmed by all the info and instead of taking action I've felt so overwhelmed that I can't focus on anything.
It got worse when we got the NHS dx which is weird because it wasn't like I was expecting them to say anything different - I knew in my heart of hearts what the dx would be but I think maybe the fact that it was so obvious to them that they said autism straight away really got to me.
I've been trying to read up on everything and just feel so overloaded. I work 3 days a week and my DH works evenings and weekends so we don't get a lot of time together on our own and I just worry so much about DS. We all keep saying he'll be alright but what if he's not? I went to the autism show recently and instead of feeling better I just felt worse seeing all these stands and knowing how many parents were going through what we are. We talked to one man who had a son who is 13 and is completely non-verbal and it just made me think, what if DS never talks? He's very bright in terms of learning (numbers, letters etc) but what good is it if he can't communicate?
Every night I sit and snuggle with him on the sofa and I just look at his lovely little face and feel so sad I end up crying. The other night I got so upset I started hyperventilating and my whole face went numb which I can only think was some sort of anxiety attack and now I have horrendous mouth ulcers from stress.
I'm currently trying to find out about ABA as I feel from what I've heard that it would be good for DS - I can't carry on doing nothing and waiting forever for the NHS/LEA which in all likelihood won't deliver. I spoke to an ABA consultant tonight for a chat. I told him that DS was using PECS (have been seeing private speech therapist as no SALT as yet for DS) and he was really negative and said something along the lines of "what a surprise - SALTs always trawl that out and sign language is much better" I was really upset when I got off the phone as feel like am I doing everything wrong? I just can't seem to get on top of things (this, the housework, paperwork) which makes me even more stressed. To make matters worse, we have our interview for DS nursery place this Friday. The thought of him going off to school worries me so much and I will miss him terribly. I keep reading stuff on autism about how much more likely children with ASD are to be bullied and I just cry and cry at the thought of my lovely little boy ever being bullied.
I'm sorry this is so long and rambly. Would appreciate any advice/words of comfort
Loads of hugs and thoughts for you.
Dont beat yourself up, your doing a grand job and your doing your best.
You need to look at what practical things you need to do, but also remember first and formost he is a child, and he is your beutiful son. Sometimes I spend all day dealing with Autism stuff but love when i can shut that off for 5 mins, have some time enjoying their funny sense of humor and great smiles.
Try not to spend too much time thinking about what he cant do, might not do but think about what he can do.
HAve you got anyone in RL from the SN world? a support group?
Hello. Sorry to hear that you are feeling so low. I am going through very similar feelings at the moment so am not sure if that makes me a good or bad person to offer you advice! But I agree the facial numbness sounds like a panic attack- I have had a similar thing in that I kept feeling like I couldn't take in enough oxygen, like my chest was compressed. Googled it and its a classic anxiety symptom which, being anxious I had worried was heart problems!
I am in the middle of some pretty scary tests for my DD and she is about to start school, like you I am going through all the worry about the future and I think it is totally normal under our circumstances to do that. I also totally empathise with feeling unable t do things and think it is all part of the same thing, all your energy is going on your worries about DS so its hard to concentrate on anything else (said by the person who was in tears yesterday at the thought of ringing tax credits-it felt overwhelming!)
I think it has to get better, seriously it does. And I am going to advise you to do what I should do-go to the GP and talk it through if you can. When my DD was a baby and I was feeling like this about her medical problems I was given beta blockers and some breathing techniques and they helped with the panicky feelings. Good luck x
Oh poor you. ((())) to you. This sounds like me a few months ago.
Things will fall into place. But don't try and rush too much yet, until you have taken time to come to terms with the initial dx.
Things like housework, paperwork etc - can you ask DH to take over some of this? Or get him to take ds out for a day or even better, a weekend, to give you the house to yourself to get some mental clarity and space.
I try not to think ahead further than a couple of years away. When I first realised (pre-dx) that ds had asd I had so many sleepless nights crying, imagining all the worst things that could happen. But just a year later ds is so way beyond how I thought he would be - yes still autistic but it is nothing like I thought, and his communication, interaction and imagination (all three of the core impairments) are so way, way beyond what I thought they'd be just a year ago.
We started ABA last year (if I replied to your threads before I probably waxed lyrical about this). Best thing we could have done. The only advice I would say would be if you were going to do just one single thing right now, start ABA as soon as you can. You have time on your side. Things like statements, suitable nursery/schools, DLA etc can wait for the time being.
Don't let what the ABA consultant said put you off - I'm sure it wasn't meant as any criticism of you - they are just always cynical and scathing about much of the standard provision for ASD children (which, you're right, often amounts to not much more than babysitting). Although I'm a bit surprised about the PECS comment - PECS is used in ABA where appropriate. Who was the consultant? Might be worth speaking to some others.
Where do you live? Have you looked into a local NAS support group?
Keep posting here. We all know pretty much what you're going through.
Thanks for the replies.
lisad - I have no one in RL from the SN world which makes it hard as I always feel like I have to be overly cheerful and positive. Maybe I should try and find a group. You're right that I should focus on the positive it's just the uncertainty I hate. Will he make friends/have a job/ a partner when he's older?
used2 - I so get what you're saying. Some tasks just feel so overwhelming, even simple things like posting on here or keeping contact with friends. Have been so crap at keeping in touch with people the last few months as even sending an email has felt like a huge task and then I leave it too long and worry that the person will be annoyed with me. Sorry to hear about the tests for your DD.
I know you are right about the GP but am very reluctant to do so. I know it's wrong but am very worried about having anything on my records to do with depression / stress as worry that it could go against you
I worry about that too but I think its part of the anxiety! I think under the circumstances it'd be more worrying to feel fine so don't let that stop you going. I do exactly the same with keeping in touch with people and worrying they are annoyed now! Also meant to say I work three days a week at the moment too and right now it feels unmanageable. I am just getting through it for now but am sure I am not doing as well as I could be. With the friends thing I have made myself see people this week and found I felt better.
I also really find our local SN group helps. All the mums there have diffewrent issues with their children but it helps just knowing we are all in a similar place or have been there. Mines run through the local childrens centre so may be worth giving them a call, they should be able to put you in touch with other groups too.
Thanks Bialy. It's good to hear another recommendation about ABA. I may come back to you for some advice on the subject (I live in east London by the way)
I've heard of PEACH and have requested some information from them as well.
I just feel guilty all the time - guilty that I have to go to work and miss them terribly but then guilty that I do actually enjoy working as think it gives me some "me time". And then I feel guilty about being so upset as know there are children with much worse problems and I have a lot to be ggrateful for.With regards to DH, he already does so much - he has the kids during the day while I work and is brill with them - takes them to playgroups, soft play, the park etc and cooks all the dinners but then he works evenings and weekends. I think the hard thing is we get very little time together as a couple and when we do, we're so exhausted we collapse on the sofa and fall asleep.
What helped me most was reading,
Emergence by Temple Grandin, she is autistic and the book tells the story of her life. Her mother I find truly incredible given she was a young Mum and there was almost no help then [50's ish]. There is a lovely letter from the Mum to a Dr telling him no diagnosis would change the child they loved. Beautiful.
Send in the Idiots by Kamran Nazeer, also asd the author was at a nursery for asd kids and then goes back as an adult to find out what happened to them.
Late Talking Children and Einstein Syndrome both by Thomas Sowell, his son talked late and he created a group of families with unusual late talking children. The book is a collection of there stories/case histories and is fabulous, mostly for the comments from other Mums/Dads and because some of them have grown up and so you get a longer view. I think the description of what it is like to be tested and tested on children and parents in the Einstein Syndrome book is very apt and cry every time I read it, but it helps.
My ds is 6 and his problems are mostly language, at 3 he knew his numbers/alphabet and colours but not our names or any nouns I can remember. He has come a long long way since then and though a year behind is at ms school. He can talk though in a limited way, he can read and is toilet trained. He loves us and we love him and he is kind and funny. Some days are difficult but mostly the hard stuff comes from other adults being horrid or just insensitive/bigoted. I feel confident about his future most of the time and I am glad to be part of his life. I was much more scared at 3 and things are easier now he is older and he can gaze at me and say "I like you Mummy.......I like spaghetti" .
Panic attacks sound awful. I would see if the GP can help and I think coming on here is a good thing. I have had good experiences of swimming lessons, riding and would recommend getting him involved as much as possible. It's extraordinary how little language you really need to just do stuff, and how much it helps. Music Therapy was helpful. I would keep looking for ABA if the guy didn't make you feel good, there will be someone who is a better/more positive fit. I didn't do ABA but I know there are people on the board who swear by it. SALT has helped me and the psychologist at our assessment too.
Hang in there.
hi my dd has sn , I keep reading about ABA but not sure what it stands for
Applied Behavioural Analysis
There are several threads about it so just scroll back a bit, though it is quite a difficult subject to talk about on this board as feelings run a little high.
Thanks for all the support yesterday. It really helps.Feeling a bit more positive today and have ordered some books to have a read.
zzzzzz - Your comment on feelings running high - why is that? (not trying to put the cat amongst the pigeons but genuinely curious. I don't know much about ABA so is it controversial/unconventional l in some way?)
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