DS nearly 2, possible ASD, I'm not coping - please help

[monkey2010]

Hi,
My DS had a traumatic birth, was premature & had meningitus. He is showing a lot of signs of ASD, hates cuddles, obsessed with doors/buttons, delayed speech. He has started hitting us in the face and other children & is generally very grumpy and frustrated. He won't sit in a high-chair in a cafe for more than about 2 mins and at the park will only want to play with the gate.
I had a period of depression after his birth and went on anti-depressants which helped. I'm back on them now and in the process of getting the dose right so feeling really low. I'm signed off work. My depression is putting loads of strain on my relationship with DH but i'm finding it really hard to have any hope for our future.
I know I have to accept DS for who he is but at the moment he is so 'unloveable'. How do I cope with this and move forward? He goes to nursery 3 days but I really dread the weekends. His paeditrician won't diagnose him yet and makes me feel as if I'm just an over-anxious mum.How do I do the best for him & us and how do i keep hopeful??

Are you having counselling? I think it would really help tbh.

I'm not sure I can help much but I can tell you our story. My eldest son is 12 now, severely autistic and non-verbal. For me the hardest time was the pre-school years. Partly because no-one believed me that there was anything wrong (neither in the family or amongst professionals) so I was very much alone with it - both in dealing with the day to day reality and all the worry. But also because I had no idea where we were heading. I dreaded ds1 ending up in the way he has - it was my utter worst nightmare. But to be honest now we're sat here in this position life is pretty good. Yes he's severely autistic, but he had a good life and we have a lot of fun. Over the years we've met others in the same situation (which helps enormously) and everything has pretty much worked out.

When ds2 and ds3 were small I worried quite a bit because obviously they were at higher risk of something being 'wrong'. I dealt with that by really not thinking about it. I thought 'right if they're not doing x by the time they're whatever age I'll worry but until then I won't think about it'. And it worked to a degree (they're both fine btw). I knew that even our worst case scenario (ie what had happened to ds1) was actually okay in the end iyswim.

If you can get counselling do, and if you can find someone else going through concerns/worries/dx then do - it can help so much to have someone experiencing the same thing (and they don't get bored of listening to you - and you get to hear them as well).

Thanks for your reply jimjams. What helped you in the pre-school years? I have had some counselling but I'm finding it hard to find others in the same position because he hasn't got a diagnosis yet and like you, no-one will acknowledge that there is anything wrong.

Poor you, monkey

This is the hardest part - that awful limbo stage. I'm in a similar situation to saintly (good post btw) and my life ain't so bad these days either.

You can still get support without a diagnosis. Look on your local council website - try children with disabilities/spacial needs/carers, etc and also see if you have a local NAS branch.

If you need advice on anything specific, eg to do with behaviour, post here - somebody here will have gone through it!

d'oh - special , not spacial!

There are others out there like you - maybe even a group for children with adhd? Surestart are holding more sn sessions too.

I went online monkey - to a now defunct website and in the SN section found someone with a similar aged child with similar symptoms. We talked online a bit then swapped numbers and would then ring each other and chat for ages. Our boys were diagnosed around the same time. I then found a few others on another website.

I wish I'd known to keep away from groups that made me miserable though (toddler groups etc). I sort of felt like I had to go but they just made me feel worse.

My experience is a bit different, as my DS had a severe receptive and expressive language delay at 3, but had a language spurt between 4.5 and 5, and is mostly doing well, but is somewhat quirky/bordering on food phobic, socially immature. (he only got a DX of language delay and subtle social communication dificulties, not a full autism DX). The pre-school years were utterly grim tho.

I think the difficulty with counselling tho is finding someone specialised enough - with either direct experience of SN or enough empathy to not just spout the usual platitudes you hear everywhere else - einstein, they all get there in the end, he just needs to go to nursery, school etc. Agree that the pre-school years are a nightmare - you don't know what the outcome will be, you feel so isolated (irony is there will be other SN parents locally feeling equally isolated but somehow you never get to find them at toddler groups etc), and the system grinds ever so slowly.

In terms of do the best for him and keeping hopeful:-
1)professionals will recommend toddler groups as some sort of cure-all. This is somewhat naive. If you can find one activity that isn't gruelling, then give it a go. But otherwise if they are making you miserable, don't force yourself. The park/zoo/soft play/museum/aquarium, etc will be just as educational for him (if that's what enjoys!).
2)expect to have to do your own digging about what support groups/services etc are available locally. eg. if one of your local children's centres does a useful class or courses, don't expect your HV to actually know this. also applies to specialist state nurseries, sadly
3)double check all referrals have been received within a fortnight, if you haven't had an acknowledgement letter.
4)read around yourself, including ASD books, and pick out what works. Don't feel you are somehow betraying your child or being too pessimistic if you get info from ASD books, many strategies that work with kids with SN are suitable for all kids.
5)rightly or wrongly, I found MN SN board an absolutely lifeline and fabulous resource.
6)is portage (sn play worker) available in your area
7)you might want to think about benefits (DLA) etc, if he needs more care than a typical child his age.

Thanks Tocha. Really good list of advice. I'm so lacking in motivation because i'm depressed. I may need to go back to my GP...

Oh good point about the counselling. I actually had telephone counselling with a therapist in the States who has worked with families of kids with SN for about 20 years. I had it as part of a type of therapy we were doing with ds1. I thought it would be pointless to be honest and didn't think I needed it, but it was probably one of the best things I've spent money on.

I do have friends who have had good experiences with local counsellors - and a lot of the issues are around grief and isolation (even if not physically isolated you can feel very isolated from your friends with kids developing typically) so I don't think they need to be specialist. But also have a google locally. I know for instance here there's a practice that has a special deal with the council where they can offer a series of counselling sessions to carers for £1 a session because the council fund the rest of it. And obviously they have lots of experience with the issues surrounding diagnosis etc.

I've never really got on with support groups but they are a good way of getting in there and finding people you click with. Once you've found enough friends you can stop going to the support groups if they're not helpful.

Are you getting portage? They might be able to help you get in contact with others/tell you about coffee mornings etc and also provide some emotional support. You don't need a dx for portage so it would be worth asking for a referral.

Has anyone used any websites to find parents locally in a similar position? I'm in Brighton

it's worth putting a shout out on here and/or Netmums for local mums to kids with SN. mind you I haven't been on Netmums for years, they still have their own SN board, but have heard some of the views on their main boards can be a bit grim wrt disability/benefits etc. I would check out the local Brighton boards as well, for their meet ups, as I think there have been some posters with SN kids who go to those meets.

Hi monkey - the others have jumped and done a brilliant job on strategies for your "unloveable" feelings. I just wanted you to know that I have absolutely felt the same way about my ds (7yrs ASD). There were times when I felt like my life was ruined. In those pre-school days I remember thinking this book, toy or holiday is going to turn the tide. I would plan activities and would be devastated when he didn't react the way I thought he should or even how I thought another child should. He hated the swings (liked climbing frames and slides) - I was so full of anger and bitterness watching other parents pushing their dc who were squealing with delight. If I could have got counselling I would have grabbed it with both hands because I definitely needed it. The main thing I want you to know is that all that you are feeling is completely natural, normal and reasonable. I felt like you and even have bad days now all parents do. Keep talking be it on here, family, friends, professionals whatever - don't keep it in. You are doing a great job you are seeking help in the right places and believe me things will get better.... I hardly recognise my ds from that isolated, zero speech little pre-schooler. He is in mainstream sch with support also had language delay and communication issues - but he is making huge strides now. Take a breath and be good to yourself

pm me, I know a couple of the Brighton girls with children who have similar issues, my ds has cerebral palsy, i am local to you

Sorry what does pm mean? Bit new to all this! Would LOVE to get in contact with others in Brighton.

next to my post on right you will see a 'message poster' icon :)

If you are in Brighton, speak to Amaze. It is a local charity for parents of children with special needs. They can advise on groups, benefits, education etc. Google amaze brighton

Can you get portage where you are - play workers who will come and work with you at home? What about Homestart?
Its hard when you get little back from a child - even with typical toddlers the workload drags you down but at least they give you cuddles etc. There is hope, DS is now very affectionate. Still very delayed (now 5 - ASD) but much improved from where we were at 2.
I would consider a SN nursery they often take children from age 2 - you may need to get a statement of SEN. A good one will want to work with parents and teach you strategies too.
Applying for a statement can be a way of forcing a diagnosis to happen quicker as its a statutory process.
You can also ask disabled childrens team of social services to assess your needs as carer and may be able to get direct payments which would enable you to get some help eg for few hours at weekend.

Thanks for all your messages & advice. Yes, i'm on the case with portage and have been in touch with amaze.

zzzzz I wish I could find something we both enjoyed together...DS attention span really limited so he spends time fliting from one thing to another. Even the things he likes, light-switches, doors don't engage him that long. The most i can get him to do is look at a book for about 5 mins if i'm lucky. He's never relaxed so I'm not when i'm with him.

couple of my 'friends' will text/message you, hope they can help honey