As DS would say... i'm having a NO day! :(

[lisa2701]

Hi all,

 

I am having a bad day and just needed to share with someone who might understand. My Ds got dx with autism in early july, he is 5. For the first few weeks i read every bit of information and spend countless hours reading on this forum, i didn't sleep at night for thinking about everything i had read that day... and i drove myself to emotional exhaustion. I didn't want to "grieve" the news as i felt if i did i was letting ds down or not accepting him for who he is (which i am fully aware is crazy as ds is the center of my universe and my love for him is overwhelming). I eventually decided one day that enough weas enough, he was still my little boy and no amount of books would make me feel any better, so i stopped reading. I now find i can't read anything without getting upset, even going onto the NAS website gets me going. I suppose as a result i have put my emotions to one side and just got on with things, although i am now FAR more aware of his daily struggles, and i do my absolute best to help him or accomidate him in anyway i can i never really think too deeply about what it all means.

 

Unfortunately i've had one of the hardest days in a VERY VERY long time with ds (his behaviour is becoming increasingly difficult, and i think that now that he's getting older people expect him to behave better, or have better manners or whatever people think, and i just hate it, i know he's not a naughty kid, i just can't seem to get to the bottom of whats going on with him just now) and it has got me thinking about things on a much deeper level, and i just can't stop crying...even now as i write this i can't stop crying. DH dealt with things fairly quickly i think, and so i think he's confused as to why, 5 months down the line i'm sitting crying about it and i suppose in some senses so am i? Is it normal to just have days where it hurts like you were back at day of dx?

 

Anyway thanks for listening i just needed to vent.

[NickyB]

Lisa, I can identify with everything you said and I'm sending you lots of these <'> >< <'> ><

 

 

We all deal with it differently and you shouldn't be too hard on yourself. You obviously love your son very much, and it must be really hard to see him having problems.

 

My son has behavioural problems, and it's heartbreaking to see him so upset and frustrated. I spent most of yesterday in tears, which I haven't done for a while - it was all the pressures of the past few months catching up on me. And I feel much better today.

 

Is there anyone who can give you and your DH a break, even if only for a couple of hours, so you can just 'be' ?

 

Hope you feel better tomorrow <'>

[Sally44]

I find it exactly the same. It is like a merry-go-round that you step on and off from. I can have periods when day to day life is fine and we get on with stuff as every other family does. Then I have other moments, usually triggered by something my son has said or done, and it plunges you into the depths. I have never felt or cried like the times I have cried since he received his dx. And I think it is normal. I'm sure there will be other times that are especially difficult eg. moving to secondary school, leaving school or going to college, relationships, living independently etc.

I was talking to him about what work he would do when he was a grown up. He laughed and said, 'I'm not going to work, i'm going to be a robber'. And at this moment I am very concerned about his academic attainment and what his prospects will be. So at the moment i'm also not in a very good place. My husband also reacts totally differently. I have never seen him upset or cry about it. He thinks he isn't very different from other kids. And he puts some of his autistic behaviour down to bad behaviour. So sometimes we don't see eye to eye on things which isn't helpful, but again I suspect that happens alot in families anyway regardless of whether your child has a dx.

But all that emotion is better let out than kept in, because it does find a way of coming out anyway no matter how you try to control it.

[Karen A]

Hi Lisa <'> <'> <'> <'>

I think everything you have posted is absolutely normal.

Finding that the child you now have is not the one you expected creates very normal feelings of grief.

The fact that you love your son so much does not make those feelings go away.

Ben was diagnosed with AS this time last year.We also love him to bits.We have worked very hard to support him and he is currently doing really well.

However I still had a bit of a rant at the CAMHS staff who support us the other week.I was very cross because when we started in psychotherapy the intention was never that Ben would have AS.Ben has done so well that he is finishing his work with CAMHS at christmas and I should be pleased at all the work CAMHS have done....but was still cross that the outcome was not what I expected.

I have spent many hours on the Forum since we first found out that Ben might have AS four years ago.I have read so many books that I have just done a review for the local ASD support group on using libraries.

 

I spend a lot of time supporting other people.Ben got a better report from school yesterday regarding transition than we could ever have hoped for.

But if I am really honest in my heart of hearts I am still part of a select group that I would prefer not to be part of. <'>

.....not that everyone here and all of the other people I have now come across are not wonderful.

 

My husband also reacted differently to me with regard to Ben's AS diagnosis.I spent over a year involved in the Forum and was even a moderator.My husband showed very little interest at all.Then a few months ago he came to the NAS help course with me and it was a revelation to him.He spent the morning saying ''that is just like Ben''

Karen.

 

[Samsam]

Oh massive internet hugs Lisa, I don't often post on here, I am a long time lurker but your post really struck a chord with me.

 

Getting a diagnosis and dealing with it is so hard, I struggled so much with my son when he was diagnosed but one day someone said something to me which completely changed my perspective of it all and I am going to say the same thing to you now.

 

The diagnosis isn't the end it's the beginning, the beginning of an amazing new life with your son, the beginning of a fantastic new relationship and the beginning of a whole new world of possibilities. You can't possibly come to terms with this unless you allow yourself to grieve - and you are grieving, you're grieving for the life you imagined while you were growing up and the life you imagined your child to have when he was born. I cried buckets and every time I did I tried to stop myself from doing so and tried to shake it off, pick myself up and get on with it, but it turns out that's not possible. Find someone, ANYONE who isn't connected to the situation, someone who won't try to give you advice or tell you to deal with it and pour the whole story out, every little thing starting right from pregnancy and what you expected right through to now, and how you feel now. If you can get access to councelling then do so, if not talk to your GP, even if that meets a dead end too then call social services and ask if there is anyone they can point you towards. I had a childrens centre SEN family support worker who was amazing for me and listened to everything. It's not something that's going to be easy at all, you'll likely feel like your falling to bits as I did, but I walked away from it feeling a new sense of purpose I came home and sat down at the PC and wrote a list of everything I wanted to know about autism and dealing with it. Each day I would get up and research one of the things on my list and ONLY one thing and for only half an hour as more would overwhelm me and I'd get confused and like you have it all running through my mind again. Having a plan of only one thing a day and doing it in the morning with a strict 30 min time limit allowed me the whole day to deal with that one aspect. Say one morning I wanted to know ways to help him with speech and language, I would research 3-4 different methods and take bits of each of them and change it so it would fit in with my life. Then at bedtime if I lied down and had it all running through my head and couldn't sleep I would get a pen and paper and write down key words on my thoughts so I could remember to add the mental questions to my list the next day. Eventually I got to a point where I never finished my list because reading and taking it in in small bites of info I found I had already covered everything. I still have the odd day where I fall to bits, the most recent was when he was offered the swine flu vaccine and that was purely a selfish reaction but I allowed myself to have mini breakdown over it and become irrational for a while to my friends online who all sorted me out and calmed me down.

 

One final little bit of advice I can give aswell is that it's easy to isolate yourself from friends because going out into the world with a child who has Autism isn't easy so it's easier just to stay in. But you must try and keep in contact with your friends as regularly as possible. Surround yourself with people who both know about Autism and those who don't too. Hand leaflets explaining it to all your friends and family and invite them to ask you questions about your son, if this isn't really an option then meet lots of new friends online, I did and I have an amazing support network now. I started to cage myself in both physically and emotionally with everyone and became so lonely and trapped within myself, so I joined a few internet forums, some that were dedicated to dealing with Autism like this one and also some forums that had absolutely no relevance what so ever just so I could talk about normal things.

 

Anyway I am ranting now so I'll shut up, if you want to talk via PM I am always here to listen .

 

*HUGS*

 

Sam x

[lisa2701]

Aww thanks ever so much everyone. It is so nice to hear that i am not alone in all of this. Sometimes i feel like everyone else has forgotton and moved on and that i'm the only one left worrying about ds and his future etc. I am VERY close with my mother but she just wants to see the positives in EVERYTHING.... which i can admire ... but on the other hand it means she never just stops to listen, you can't tell her about a concern or a worry without her telling you why you shouldn't be concerned about it ... very frustrating at a time where you need to pour your heart out. None of my Friends have children yet so they don't really get how upsetting somthing like this could be, and i'm not particularly close with my other family members. My DH is not that good at "emotional things" as i'm sure a lot of people aren't, but it means i don't feel i can't really turn to him either.

 

One thing i have really got a lot from is hearing how some DH are dealing with it. I have never told anyone that my DH really doesn't seem overly bothered by ds dx, and expects the same from him as before. I don't want people to think of him as a bad father ( because he's not) so i have just never mentioned to anyone about my frustrations at his lack of understanding! A BIG problem we are having between ds and dh is that the bond you would think a father and son might have just simply isn't there. DS refuses to listen (often ignoring completely, or more frsutrating doing the complete opposite of what he is asked) dh, it has even got so bad that ds has said on several occassions that he doesn't love my dh, i find it completely heartbreaking , and equally exhausting because what it means is that i have to do EVERYTHING, especially when it comes to disapline, or calming ds down after a melt down. I wonder if perhaps going on a NAS help! course would help dh understand things better, and myself of course.

 

I like the idea of taking one subject a day to look into and only allowing yourself a set time to do it, i'll defaintely give that one a go. It just amazed me when we got the dx at the lack of support there is to parents. The only think i am aware of is a weekly meeting that is local to me on a tuesday morning, but i've never been brave enough to go to be honest lol. Maybe that has to be my next step?

 

Thanks again to everyone who replied, and if anyone has any suggestions regarding DH and ds or similar stories i'd be greatful to hear about it.

 

Lisa xx

Edited November 14, 2009 by lisa2701

[trekster]

14 years post diagnosis and my mum is very upset about autism issues.

Yes it is natural and expected to be upset for your son. However there are NAS groups and courses you can attend to help.

 

http://www.autism.org.uk/nas/jsp/polopoly....1349&a=5602

The EarlyBird programme

The NAS EarlyBird programme is a three-month programme which combines group training sessions for parents with individual home visits when video feedback is used to help parents apply what they learn, whilst working with their child.

 

The EarlyBird Plus Programme

EarlyBird Plus has been developed to meet the needs of families whose child has received a diagnosis of an autism spectrum disorder, is aged between four and eight, and is in Early Years or Key Stage One provision.

 

Your local NAS branch can help you meet parents of autistic children.

 

Email the autism helpline and mention you find dealing with your sons autism all too much.

 

Other things you can do

Keep posting and reading on here when you are having a better day.

 

1 book "multicoloured mayhem" has a section for parents including "how to look after yourself".

 

Can you get your depression treated by a doctor or counselling or something similar?

 

Alexis

[JsMum]

 

 

Sending you some of these, <'> <'>

 

take it easy and look afteryour self.

 

JsMumxxx

<'>

[lisa2701]

Hi

 

i'd just like to thank everyone for there support, it really has helped. I have been treated with depression on and off since i was 15 and right now i actually feel the best i have in years, i do not think currently i am suffering depression, but i am normally fairly good at recognising when i do need help so yeah i'll keep a close eye on myself for a bit. I think i just had a particulary hard day yestersay. I had a bit of an incident with ds while visiting a family member and they weren't very sypatheitc about things and it upset me. I really just needed to be thicker skinned tbh. But it kinda set the mood for the rest of the day, Ds was extremely stresses and rebelious and I was stressed and upset. I'm just putting it down to a bad day tbh as generally speaking i cope really well.

 

As stated before my ds's relationship with my dh isn't the best, but my relationship with ds is as close as can be. I sometimes wonder if its just the case that i am at home with ds 24/7 and he is an only child so he has my undevided attention every minute of the day, and dh works a lot of hours so doesnt' get to see ds as often as he'd like (sometimes can go a couple of days of only seeing him an hour in the morning) and wondered if perhaps.... ds seen it as, i am always here/ daddy is there some days not the others and also takes away from the attention he gets from me? Hope that makes sense. LOL.

 

Anyway i'm rambling on but i hope i've made sense

 

Lisa xx

[trekster]

Sounds like you could benefit from some respite care. Could you approach your local social services to ask for a weekend off a month?

[lisa2701]

Hi,

 

Thanks again for all the support and concern, but i really do feel as though i am coping ok with things just now, just had a bad on friday. Have to assume that one bad day out of a couple of months is normal. I really don't feel the need to be treated for depression or have to bring in any outside help as yet. But you can be sure that i am not too proud or stubborn to ask for help when i need it, i had done it in june/july when i was having troubles and recieved a lot of support from my local health visitor, which i am sure i could get again if i required it, certainly she could point me in the right direction if needed.

 

Thanks again for all your support and kind words

 

Lisa xxx

[mygifts1306]

Hi Lisa, sending you lots of internet hugs, <'> ><

remember to look after yourself as well.

 

take care...

[Nikkih]

Just wanted to say don't be too hard on yourself, and don't think that just because you're getting upset or emotional that you're not coping or letting anyone down. Our DS was diagnosed at 3 years 8months, he will be 13 in 3 weeks and there are still times when i only have to hear the word autism, or read some of the posts on this site and I will be in floods of tears.

 

I don't know about anyone else but I think for me, these feelings will always surface now and again. Most of the time we cope fine with the autism, i find particularly when I am fighting for something or if there are pressing issues out of the ordinary then I am at my best and deal with it without getting too emotional, but when things seem to be going well and i'm not fighting against anything, I tend to go down a bit and find it hard to deal with the autism.

 

Autism is a life-long condition and although we may come to terms with it and be positive for the most part, it can still take us by surprise on occasions and feel as raw as receiving the diagnosis all over again.

 

Take care

 

Nikki x

[lisa2701]

Thanks mygifts and Nikkih,

 

Times have been hard recently as we (DH and i) are curretnly in a legal battle with my mother in law . She is a very difficult woman who often let DS down, changed plans at the last moment, went agaisnt our wishes etc. After DS got his DX we sat down and tried to explain to her why she couldn't do this anymore and what his dx ment for us all. She made no attempt to learn, understand or accomidate his autism. In september she turned up 4 hours late to pick him up (throwing out his bedtime routine) and then took massive offense when i politely told her if i knew she'd be so late i'd have asked her not to take him so that he could have atleast got his bedtime routine. So we ended up having a massive fall out. A few weeks later i text her to try to make arrangements so she could see my DS and she was met with a very agressive personal attack against myself and my DH and our parenting! She even threatened to fight for custody! Obviously realsising she'd not stand a hope in hell of getting custody she is now taking us to court for access. I am at my witz end with this woman who has caused nothing but problems for me and my family since the day i met her, even my DH can't stand her and its his mother! So yeah i'm pretty stressed with that.

 

On the plus side, DS has been moved from the bottom to the top reading and language group in school in only 2 weeks! I'm super proud of him! Also DS got granted DLA - top care rate. so very pleased about that too.

 

thanks for listening again

 

Lisa xx