I can't cope and I can't seem to get DH to understand

[Funnyface89]

This has been the most awful year so far and I feel if things continue the way they have been I'll have some sort of breakdown. My DS (Just turned 2) has had on going development concerns from October 2012 I have been back and forth to my doctor at least 20 times for various things (infections, glue ear, tonsils etc) and trying to get a referral for a development doctor to see him as we suspect he may have ASD.

I have seen numerous people his doctor, my HV, head of nursery, speech therapist all of who tell me different things and the not knowing is so stressful I feel pulled in every direction and my emotions are all over the place. I am at the point I don't care what is going on I just need to know so I can help DS who's behaviour is hard to cope with. He screams constantly (I feel he is frustrated as he is non-verbal atm although some words are starting to come) and he's gone from such a happy baby to a child that no-one (even my own mother) don't want to spend time with which in itself is upsetting. People in the supermarket and other places tut and make load comments about "not disciplining" when he gets upset when we are out it is that bad I avoid going anywhere apart from the park on my own with DS.

Work are not very sympathetic although they know what is going on. I am made to feel awful if I need time off for any of DS's appointments and I have used all my holiday to cover these as I didn't want them to make an issue out of it all. It is a fairly stressful job and involves working to lots of deadline that legally can't be missed. Someone new is starting soon and I know I will end up having to train them which is added pressure onto of a full-time workload when I only work three days a week.

I've gone from being someone that had a lot of energy to someone that just about functions through each day. My house is a mess whereas I used to clean it everyday, I look a mess and again I always made an effort to look nice and the thought of having to socialise with anyone leave me feeling panicky about preparing for it.

Its so hard to type all this without sounding dramatic and I know people have it so much worse then me but I feel like if someone offered me a plane ticket to the other side of the world I would be tempted. I've had a constant headache from about December that won't go away and I know it is just tension as it gets worse as the day goes on.

I have been with my DH for 5 years (married for nearly 3) and we had some issues when DS was born but worked through them. I have tried to tell him how I feel but he doesn't seem to be getting it and although he sympathises nothing seems to change. He is unhappy at work and I know he is also upset about DS but I can't seem to get through to the one person that I should be able to talk to. He has always been a quiet person and not much of a talker but I feel I need to tell someone how I feel otherwise I'll crack up.

Sorry to hear about your understandable stress.

What does DH do in your family set up? Share of chores/ time off work for appointments/ looking after ds?

What were the problems you had when ds was born?

Sorry I don't have any experience in the field of possibly having a child with ASD but I didn't want to read and run.

You can't make your dh understand but you do need to talk to someone. If your dh can't offer the support you need then what about other family or friends?

Are there any support groups nearby for children with ASD or parents of children with ASD? I know you don't have a diagnosis but they may be able to offer advice on how to move forward through the process.

Lastly, try not to be too hard on yourself. You're coping with a lot and it's no wonder you're feeling stressed. It might be worth having a chat with your own doctor to see if they can suggest anything to help with your stress. You sound completely focused on all the demands on you, and if you can get even a day or afternoon away each week just to focus on you, it might help to recharge your batteries a bit. And don't feel guilty about taking time for you.

I really feel for you - worrying about your child can be enough to send you to the edge without the additional pressures of life.

From what you describe - loss of energy, wanting to escape, feeling you can't cope, feeling social anxiety and not being able to keep up with household tasks etc. - I'd say you are definitely depressed (apologies if this is stating the obvious). Go and speak to your GP about how you feel and getting some support for you. Definitely try and get counselling as well as anti-depressants. I had a similar situation a while ago and I felt that the ADs on their own didn't help, but the counselling/psychotherapy really did.

It can be so hard when you have concerns about your DC and you aren't getting any proper answers. Push the GP while you are there on a referral to a Developmental specialist, and make the point about the affect the worry and stress are having on you.

Is there something practical you would like your DH to do to support you? Come with you to the GP? Support you in getting a referral for DS? Do some of the appointments with DS so you don't always have to take time off? It can be so hard when your partner can't or won't talk, but some people (women as well as men) don't have the emotional capacity to discuss these kinds of feelings, or have issues of their own that prevent them opening up (I'm applying my own experience here - DH is fantastic in many ways, but does not 'do' emotions, especially depressive ones). Asking him your DH to do something specific and practical to support you NOW may be easier for him and make him feel like he is helping. Talking to a counsellor or a supportive friend may give you more support at the moment than expecting DH to step into that role.

HTH?

Hi OP are you in the uk?

Can I recommend Homestart to you if you don't mind? It's where you have a volunteer come round for 2 hours a week just for some support and help if you need it.

You can refer yourself or ask your health visitor to refer you.

The volunteers are people who all have children themselves and know that sometimes it's hard and we all could use a friendly ear without someone judging us!

Let me know if you want me to link the website?

A coordinator would come round for a chat first and discuss if you want the service and what it offers, you can stop the support at any time it's totally up to you.

It sounds like you are just doing the best you can and just want some support.

DH does come to some of the assessment appointments if that is the right term but the standard doctor ones are left to me. He does help around the house if I ask but he has a long commute and so less time to help during the week. He also helps with DS but the crying goes right through him and I can see it stresses him out so I tend to take DS at those points.

When DS was back from hospital the first morning DH said he regretted having him which meant I left and went to stay with my parents as I was so upset. He agrees now it was a stupid thing to say and only said it because he was sleep deprived. It took ages to get over it and although it pisses me off still I put it down to stupidity and don't mention it anymore as it just upsets me.

Hi. I am going through the same thing with my dS who will b 3 in Novemeber. The difference is I'm a paediatric nurse and I have a better understanding of the help available for my boy. He is my third of four children so I understand what tiredness is. You need to get an OT referral. Your wee man may well have associated sensory issues and the OT will help u understand what these are and give u the tools to help dS deal with his frustration. You seriously need to do this. It will help his behaviour then in turn ur mum will be better able to help out with him.
As a special needs mum it's very easy to try to be all things to all men. STOP!!!

Take a deep breath and everyday do one thing just for u. Even if its just rubbing in a body lotion. Or reading the paper. 10 mins is all u need on a busy day. If u can get more then get it.

As for work? Make an apt with ur occ health or human resources and find out ur rights. U will have many apts with ur boy which u can't miss and ur employer has no choice but to assist u.

Much love and hugs sent your way. I know how tough it is. As for ur husband? Well when u make him understand let me know how u did it so I can do the same to mine.
Xx

May I also suggest you post too on the Special Needs; Children forum as the people on there could also be of help and support to you.

have you posted on the special need area ?

my ex never thinks kids have anything wrong with them . my kids are in the 20s now .

that is one of main reason he one my ex

having a special kids there are always lots appointment and meeting and these are always in working hours so it is very hard for both parents go to them.

I spent loads of year doing what i called fire fighting not planing anything just going frim one thing to another.

I really only have one friend who I have tried to talk to but to be honest she doesn't seem to understand, she has no kids and she always says "it will be fine" and moves the conversation along. My mum keeps providing useful comments like "oh hes annoying" and "he's just attention seeking" while my dad takes it as a personally insult if DS crys near him. My brother is actually brilliant with DS but like DH doesn't talk emotions.

I think I am depressed but I don't want to see my doctor as same as DS and I think he thinks I am being over the top about the ASD possibility and it took me ages to get a referral so don't want him to think all of it is just me being depressed and paranoid.

I am in the UK yes - I will Google them and get in contact thank you.

Can I just ask what is an OT referral? we have had one assessment it connection with the ASD but they said he was too young and so we have to go back in November when he is older.

Thank you I will post in the special need section - silly I didn't realise there was one.

I think it is all the uncertainty that is the worst I feel I have no control and cannot plan which is an issue of mine I need to work on as I think this is leading to a lot off my stress.

With work we are a very small firm and the HR man is my boss who I have to request the holiday off so think I will just have to be more assertive and do it for DS as I have literally no holiday left to take until 2014.

DH's problem is the not wanting there to be anything wrong which I can understanding but at the same time feel like shaking him! Just writing it all down seems to have helped

here is a link for the Homestart website

I hope you can find some support, I have friends who have recently been through the assessment and found it stressful enough with the support of their partner.

I am currently trying to find out if my son has dyspraxia which I am doing by myself as OH doesn't want to believe anything is wrong either. I don't want there to be anything but ignoring it doesn't make it go away

Hi funnyface - I do think it's really, really important you seek help if you are depressed. Please don't let him put you off. You can ask to see any GP at the practice, it's your right. If you feel you need a reason not to see him, say you want to speak to a female doctor when you book. If you feel he's not taking you seriously (and being patronising while he's at it - been there too) a change of GP with more understanding may be a good thing anyway. It sounds like you are getting some excellent advice and you might have other referrals to request too.

OT is occupational Therapist. Ur speech therapist can refer u.
My husband is the same. He accuses me of being over the top despite our SALT saying he has problems. The only thing that gets thru to him is coming to the assessment appointments and hearing it from the professionals.

OP I have been in a similar situation for four years, my girls both have additional needs, my 8yo has had developmental issues for years and we are still waiting to get to the bottom of after all this time. It is immensely stressful. My h has been 'sympathetic but apathetic'. I have personally found it worse than useless and only adds to the stress. Personally I decided I am better without him. Strangely, now that he is gone I feel like my kids issues are not so difficult any more! For me, I think my h's lack of support or engagement made the issues with the girls seem even bigger. I am not saying our situations are the same, but I think it is important to explore your own feelings, perhaps by having some 1:1 counselling with a really, really good counsellor.

I've been where you are. It was the most stressful time of my life, a and that was without a job at the time (although I did have another newborn.)
You need support. Mn was an utter lifeline for me, especially the wonderful ladies on the sn section. It will get better as he gets older and when you know what you're dealing with. My ds is an utter joy, a gorgeous, loving, funny little boy who happens to have asd.
Xh and I separated over his inability to support us as a family unit, he just couldn't get his head round it. Ironically, he's a lot better now.
Pm me if I can be of any help. I made myself an armchair expert on asd as a coping strategy at the time.

I am going through the same & it's improved a bit since my ds started to speak but it was tough getting to this point. My ds was born 14 weeks early so suffers from developmental delay due to his early arrival & is now being assessed for ASD aswell.

Here are the things that I've found helpful for our situation:

1. Visual time table & prompts - print & laminate somr basis pictures of your routine & stick them on a piece of card. Show them to your ds & once you've completed that activity get him to take the picture off & give it to you.

Kids with speech delay often behave badly because they cant communicate what they want so using pictures will help.

Always talk to him & let him know if your routine is going to change in anyway.

2 - the National Autism Website is a great source of help, particularly for practical ideas & links to other websites. They may also have a local support group.

3 - GP's unfortunately are the least informed when it comes to ASD. I found myself informing my own dr because she didnt have a clue. Read up as much as you can so you dont get fobbed off with the usual 'he will grow out of it' excuse. Keep pushing, the more informed you are the less likely they are to fob you off.

4- find out what the behavioural triggers are for your ds and avoid them or have strategies in place to deal with them. My ds has a meltdown &/or becomes agitated about:
Loud noises
motor bikes & diesal engines
high pitched screams
texture of grass
Feeling of slimey/thick or grainy textures
very sensitive about his head so doesnt like being touched around there.

5 - compile a comnunication passport. Its a book or A4 file with all the info re your son about likes & dislikes. Its useful info on how to handle your ds on his own. Its very handy for nursery.

Keep pushing for apts and try to compile a b plan.

Could you spread your work over five days instead of three? Then book appts at beginning or end of day so you can work around them? Also look at working families for rights for time off for disabled child

www.workingfamilies.org.uk/articles/parents-and-carers/caring-for-disabled-children. Obviously now you in assessment phase but try push for specialist assessment as soon as...

Visual schedules photospictures yes.
Keep diary of poss triggers for behaviours is it sensory related too much noise too little, textures, etc

Agree with poster above that child.s problems seemed much less when p was ex and wasn't making such a drama of it and being unable to cope...

See if you can tap into local special needs groups meet other parents etc

www.netbuddy.org.uk/info-packs/apps-ipad/. Get iPad and protective case like griffin and try the diff communication apps cheap or free ones make him choice boards for food or drink or people or toys ..communication is key to reducing frustrations And children with ASD tend to work on visual level