Step Parenting Family with child with Aspergers**All help & advice needed**

[emma16]

It's hard to write the entire story on here without it being turned into a book so I will keep it as short as possible whilst giving the whole truth so hopefully someone can help me in some way.
I had my son at 20, as a single parent but my son's dad has always been involved in his life. Met my now husband when my son was 3 & 1/2, when we decided to move in together to be a family, i made the move to his house/area (being an hour away from where i lived) as he earnt the most & it wasn't really possible for him to commute from where i lived to his work.
We had a little girl together when my son was 5, she's now 6 & my son is 11.

Life is far from happy right now & tbh hasn't been for the past 2 years. My son has always been a 'difficult' child to live with, raise, parent, whatever you want to call it. Constantly been in trouble in every class in every year, always had 'help' within school & their social woman with his 'anger management' as she puts it.
Without going in to every story & droaning on, just over a year ago things culminated into a situation where we just couldn't cope with DS (does that mean son??) anymore. We were on a brink as a family. We went, again, to his school for help & as a mother my instinct was that all was not right with my son & asked if we could be referred to someone for some help/assessment etc. We went through our doctors to CAHMS & DS was initially diagnosed with Aspergers & ADHD.
I'm not one for labelling kids & tbh I didn't now how I felt about this. It was a relief in some ways as it meant we weren't just parents unable to deal with a child, but in another I felt like it was just another can of worms to be opened.

Anyway, he's on a waiting list to see the multidisciplinary team for potentially full diagnosis, his consultant is confident he will get it but I am aware that he could fall short by a point or two.
For me this doesn't worry me because at the end of the day my son is my son, regardless of anything else.

The long & short of it is, our family life is just terrible. My DH cannot cope with DS at all and if I'm being truly honest i don't know if he ever will. God love him he's tried, so much, and more than a lot of other step fathers would..only myself & him know what we've been through as a family & lord do I know & understand why he feels the way he does about DS.
It's got to the point where they can barely be in the same room together without some animosity coming from DH, DS doesn't get it because he's got no mental ability too except when it's a bad day or some massive rows occurred & then he'll be just as awkward!

We've tried all kinds of tricks & ideas to get our family to work...at one point DS was going to his biological fathers every weekend to give us a break & down time as such, but as he lives an hour away, it just wasn't going to be something that could last forever & was hard work in itself.
This year we had a holiday without DS, after last years disastrous trip to Florida DH said he was not taking DS on holiday again as it was completely ruined..which to a degree it was i have to agree, but as a mum I can probably put up with & make the best out of a bad situation than he could, who knows? I'd agreed the previous year after Florida that DS could stay with his father this year, but now its become 'he's not coming next year, and the year after that we want to go to Florida & we all know what happened last time.'
The past few weeks have been horrendous as it all culminated yet again...previous to this there had always been the option that DS goes to live with his biological father & with this idea I have been to some dark dark places in my mind as my mum gave me up at a similar age to DS & I know only too well the effect on a mother giving you up effectively, can have on you. I don't think his father could deal with him whatsoever as he's never lived with him as such, he has no ability to talk, just rage, and after many many months i finally told my DH that I did not see DS moving there as an option. I love my son regardless of the stress he causes, he's a child, my child, and I cannot allow him to move there full time. It just isn't an option.
DH thinks its an option that hasn't been tried & we shouldn't over look it as it could work...but in my mind i know it wouldn't. It would tear me apart to hand DS over as such, will I then end up hating my DH for the pain it causes me? Could I then lose my DH too? Probably.

So, to bring it to date, DH's idea for us to try & desperately work & keep us together as a family is that DS goes to his fathers every other weekend, which means when DH is off work, DS is at his dads and when DH is at work, DS is at home with me. He doesn't come on holidays with us & his biological father will have to step forward & have him so we can have our time away...inc half terms he wants him to take more responsibility too.
Just before I conclude, the consultant we initially saw over a year ago said to DH, when we went back for a 2nd appointment as we weren't coping, when looking him in the eye 'You need to decide if your in this for the long run because DS isn't going to change. How he is, is how he is'. And just the other day we were having a meeting with the new head of his last school where we found out her son had Aspergers & ADHD, and at one point in the conversation when i said we don't do anything as a family of 4, no days out, trips, holidays etc. She said you can't live like that, it's not fair to them to miss out because they have to have experiences just like all of us. And it really struck a chord with me.

Personally, I don't know whether I'm just run down from years of this constant daily battle or what I'm not sure. But can we really ever work as a family? I'm rapidly losing the ability to see that we can.
Do I want to live as part of a family where my DH barely see's my DS, tolerates him for the sake of not losing his wife & DS in his every day life, never go on holiday as a family of 4? Will it get worse as DS gets older & changes physically because we've already thought of that. Can this work for potentially the minimum of the next 9 years until DS may start to make his own way in the world?
I really have no idea & I hope someone has, well I'd like to hope no-one else has been in this boat but potentially someone has, some answers, ideas, clues, advice...anything to try & help me decide what to do.

I have a son with on the autistic spectrum. Life is very hard and I agree with someone else who posted on mumsnet that said its like having a permanent toddler.

That said, I read your post wondering why you were considering sending your son to live with his dad above leaving your husband. I have remarried and my DH is amazing with my son. He puts so much effort in. Some days my son is a nightmare with his meltdowns, throwing, kicking, shouting insults, but at the end of every day DH will sit and read DS a story.

It doesn't sound like your DH is making an effort. Based on your post, which obviously isn't the whole story and it's only your view and not his, I'd be ending the marriage. I had a couple of relationships with men that couldn't handle my son (before he was diagnosed) and it damaged the relationship both with my partner and with my son. I should have protected my son better.

Thank you for your reply & your honesty. I went through a period of thinking that perhaps my DS going to his biological father could perhaps be an option because i am so torn & worn down by the whole situation.
Honestly as well because I don't want to lose my marriage..aside from my son we've had a happy marriage & theirs also our DD to consider in all of this.
She's seen & witnessed more than a girl at her age and I don't want her to go through her parents separating ultimately because of her brother.
I know others won't see it that way, there is the answer that the marriage could end because of DH in a way, not DS.

DH has tried & tried for many years now with DS to be completely fair to him. Your right you don't have his side of the story but I'm not looking for someone to lay blame at, no-one's to blame with our situation, I'm just stuck in the middle of what feels like the world on my shoulders.
I can't carry on living like we do as a family with DS excluded from us, DH thinks DS not being at home on the weekends he's off work & never coming on holiday can allow our family to work..but in my heart of hearts i don't think it ever can. I love my son regardless of how he is, I feel such guilt not taking him away, always organising things for when he's not around etc.
I was just unsure whether for the short term until he grows older & makes his own way in life, if i should compromise, so that I keep my marriage.
I don't have any parents to turn to, hence why i came on here to see what help or advice I could get.

I couldn't spot where you said how old your DS is?

5yo DS has been recently diagnosed with asperger's, and we had a horrible time on holiday this year.

We are lucky in that we only have DS to worry about, i.e. not other DCs.

If you get the diagnosis confirmed, it tells you that your DS is acting the way he does because he cannot help it.

Your DH, on the other hand, in asking you to give up your DS? Well, he can help that. But it sounds like he sees it as optional.

So, do you see your DS as "optional" for you?

Only you can answer that question. If you think he is essential to you, and your DH thinks he's option, then you have an answer.

Good luck - this is tough.

DS is 11, DD is 6, sorry i should have made that more clear.
I have told DH that I do not see DS going to live with his father as an option now, it's not something I could possibly do as a mother as the guilt & pain i'd feel would probably end up tearing me & DH apart anyway.

DH has said we need to find ways to manage us as a family then if DS going to his fathers is not an option, hence DS going to his fathers every weekend that my DH isn't at work so he doesn't basically have to spend any weekends with him..in a nutshell. DS's father to step in more & have him when we as a family of 3 want to go on holiday etc.
But we've tried all this, DS has gone to his fathers every other weekend for as long as i can remember..earlier this year he was going every weekend because we weren't coping at home & we went away just me, DH & DD for our holiday without him....yet we're still here.

It's not that im giving up on my marriage, I just am rapidly running out of energy to keep everyone happy & not keep going round & round in circles with the same thing happening.
DS started at high school in Sept & they are being fantastic, he's been observed, supported etc, put in to homework learning support, im really pleased with what they're doing.
I suppose what I could do is be honest with DH & say do you know what no im not going to stick to DS going to his fathers every other weekend & no i dont want to look back in 10-20 years time at holiday photos & never see his face in them...and see what his reaction is to that. If he can't agree with all that, then i suppose i have my answer :(

I think your dh needs to consider counselling in order to understand his feelings more and perhaps family counselling is something you need to consider.

however, chikd trumps partner so if your dh is insistent that your ds (yes it means son) becomes some sordid secret that is kept hidden from him then I strongly suggest to reevaluate your marriage.

aspergers is a mental disability with no cure and it is not something your son can do anything about. if he had a physical disability like a misformed hand or a missing leg would your dh be avoiding him or sending him away?

none of this is the fault of the child and punishing hi. by sending him away and excluding him from holidays is cruelty at best and abusive at worst

please consider your son first

Its a horrible position to be in, especially given that it wouldn't just be a case of you leaving your husband, but also your DDs father. Could CAMHS offer some family therapy? Ask for it! If your husband won't move heaven and earth to attend then that would tell you all you need to know. At the moment you are not a family, you and the kids are a family, you, dd and dh are a family, you and dd must be shattered! X

To be honest your all right. Everything each of you have said i completely agree with.
I'm just so scared about what the next steps are in front of me.
I have thought about the family counselling, and even counselling for just myself & DH. I am going to explore it & find out, although first I think I need to have an open & honest discussion with DH that I cant carry on living this way as a family, and especially the way my son gets treated.

If I do that & say I want him to come on holidays with us, i want him to come on days out etc, if one weekend he actually doesn't want to go to his fathers or I want him to stay at home to have some time with him & your off work, is this all going to be a big deal that you simply can't live with?
If the answer to all of that is 'No i just can't do it'..am i wrong to think no amount of counselling can change that?

I've been very privledged to not have to work since going on maternity to have our DD..altho i did do some part time domestic cleaning work when she started half days at school just to give me some routine & get me out the house, and now I am back in a proper job working a min of Mon-Thur 10am-2pm. From a financial point of view I've no idea of what would lie in front of me should we split, I know I would have to go full time which isn't ideal given i'd have to involve a childminder etc but i wouldn't really have a choice.

Thank you for all of your help. It does give me some confidence to try once & for all to sort this matter out..before I lose a complete head of hair!!

Finances - don't get too ahead of yourself. I was better off as a single parent than I am now married to my DH!

I feel really sad for your DS, not getting to join in on the fun weekend times and holidays. I'm actually a bit angry with your DH for suggesting it. Your son isn't optional and being sent away could be very damaging for him.

Even if your DH gave that answer, counselling could still work. Are you getting support with your sons autism? Do you claim DLA for him? Have you been told about support groups in the area?

I worry about the effect on him knowing we go away without him, i don't like it at all & i've tolerated it all thinking its the only thing i could do because honestly i've just not known what to do!

We're getting more support since he started high school, they've been amazing & he's been observed a few times now. He's seeing their learning support group regularly as they did an assessment on him just yesterday & scored very high to concern them with his state of mind. I have asked to see the assessment & what he said so I should receive that at some point next week.
We're a year into the waiting list for him to see the multi disciplinary team for a 'full' diagnosis. The Senco at his school have spoken with CAMHS & there can be no movement on the waiting list, how can you say one familys needs are higher than another's when they're all in the same boat? But they are sending out another appointment for us to go back for an 'update' meeting as such.

We did that back in March time when things had got to much & DS consultant said to my DH then, never looked at me but looked directly at him & said 'You've got to decide if your in this for the long run because DS is never going to change. Even if he fails to get full diagnosis by a point or two, I have no doubt that he has Aspergers I knew he had within 2 minutes of meeting him. That said a full diagnosis won't change the way he is either, he'll always be the boy he is.' I remember it word for word.

Just the other week we went to his old junior school as we found out that they had not passed any details for his needs on to his new high school whatsoever! So as you can imagine I was seething when i found out that he had been forgotten about despite all of my years of constantly going in to that school about his behaviour etc. The schools just been took over by a new headteacher so I arranged to see her to find out why they'd failed to pass all of DS info over..turned out her son who's 20 now has Aspergers & ADHD! We had a long chat with her & at one point she said to DH you can't not take him on holiday, it's not fair for him to miss out on experiences no matter how he behaves etc.

No we don't claim DLA as like i mentioned he's been initially diagnosed & we're waiting for full diagnosis..altho I'm not sure how some money would change things?? It's not something ive given any thought to tbh, all I want is each person in my family to be happy..which is proving more & more difficult as time goes by!

I think you are in an impossible situation and to say your child comes before your partner is waaaaayyyyy to simplistic.

The first question to ask is whether you are getting any quality support in terms of intervention (timers, Makaton, Financial, ASD training courses) Not that it may help solve your problems but....

Seriously Florida with an undiagnosised child with autism, all the queues and sensory overload. There are ways to do things better with a diagnosis. But it might never work

ALSO and most importantly, families come in all shapes and sizes. Dealing with Autism can be exhausting, just writing off your DH because this is difficult might be premature. You are in the insidious position of having TWO children to think off and those needs may conflict. Nobody thinks the less of a NRP who has their children regularly every other weekend. At the same time some parents don't live together even if they are actually still together. I baulk from the every weekend but every other weekend should be entirely doable, then everyone gets a bit of a break. With a bit of a break it might be possible for your DH to get a bit of perspective

You sound exhausted, Your DH sounds exhausted. The work involved in repairing what has been lost may not be right for you right now. As the primary carer of a child with Autism you need to look after yourself else you won't be in the right place to meet the needs of everyone else. That might mean that right now you need to put your DH's needs on the back burner. But that also doesn't mean that now is the time for absolutes and dump the bastard

DLA can, depending on your desires and your DS's needs, be a gateway to other benefits. So if you are award middle or higher rate care you are able to claim carers. if it works financially for you this can mean that instead of working you use the time to educate yourself on autism and look after yourself in order that you are better able physically and mentally to deal with everything that being a carer for a child with autism means.

You may not feel ready but make contact with local support groups. you may go to a few before you find one you like but they really can keep you sane.

emma I think you have accidentally given your DS's real name in your 17.48 post. If you report it to MNet, they will edit it out for you.

Wise words from coffee it's probably not the time for ultimatums, but is the time for clear thinking and looking after yourself and DS.

Sounds like you have been carrying a lot for a very long time, without great support from school.

If you haven't already been over to the special needs boards, they are very kind and helpful there, and may have tips for you to try to help make life a little easier at home.

I agree that both myself & DH are exhausted from the whole situation. We've tried to parent DS in the right way since he was little, never actually getting anywhere but because no-one said 'have you thought he might not actually just be a naughty little boy' we carried on till breaking point.

We went to Florida last May, he got his initial diagnosis in the October as family life became unbearable...until he gets his multi disciplinary appointment which im led to believe is around another year away, there's not much I can do in the way of DLA & potential support that may bring with it.

I feel like I'm losing the plot with it all as I'm too busy worrying about everyone else, whats the right thing to do, whats wrong, can we ever be happy as a family? I probably have come off track as such. I do have an appointment on 28th Oct with a lady who is an educational psychologist at DS high school..she does parent drop ins & senco put me forward for it.

I know what I'm tired of & that's I always feel I have to constantly defend my son to DH, i feel a constant atmosphere between them altho not really DS as he has no mental capacity to remember any personal issues! I worry that DH not having any time around DS means how can a family ever work & would that not just make matters worse? How can DH ever learn to be in the same room or 'want' to actually be with DS if he never spends any time with him?
I've read several books on ASD & Aspergers which has helped but I feel the next step is an honest conversation between DH & I..then, if he is willing, some counselling to try & work on all these issues.

Thank you all so much for your help & advice tho, it really has made me feel quite positive in moving forward & trying to take new steps..and more importantly me getting some confidence back in standing up for myself & my children.

Have you read the Explosive Child? It was recommended to us on the special needs boards, and by the consultant who diagnosed DS. Still early days for us on using the technique, but it's great on explaining about the group of kids who will never respond to "traditional" good behaviour management.

We did have to get over the mental hurdle of accepting this applied to DS.

Please please get yourself along to a rl support group, I really think this is the best thing you can do for all of you right now. Not only will you get some RL support there will be a wealth of experience that might help you.

As much as its not the time to write off your DH, I don't feel you have to rush that conversation either. you have a lot of peoples needs to deal with right now and, as an adult, his really are the ones who can wait.

Right now I would focus on really narrowing down whether there is anything that can be done to improve your DS quality of life and therefore in turn improve yours. that means quite intensively looking at his behaviour in a different way, for example looking at what me be sensory, what's anxiety, what's social anxiety and working out ways to tackle anything that may be improvable.

I think you've had some good advice here in a very difficult situation. But one other thing - would your ex be able to get any more support to help him be a better parent to DS? I think it's easy for professionals working with children just to relate to one household and overlook the other parent. I understand why you wouldn't want to just send your DS to go and live full time with his dad but sounds like you might all do better as a family if DS's dad was better at coping with him, and you were more confident on his ability to do so rather than left feeling that you're the only person who can talk care for DS.

You really need some local support. Find one and after chatting to them you will get more contacts. Surestart or your local council may be a good place to start.

The EarlyBird Plus course would be really good for you (even though your son is 11). It will help you see the world from your son's eyes and help you learn how to change your own behaviour to help him. I would really recommend it.

Get started on the DLA form. It the most horrendous form in existence. The money is there to help with your DSs needs. For my own DS it allowed me to get him eg a weighted blanket/ night lights/ lava-lamp type soothers (doesn't sleep), new underpants every week (incontinence), individual swimming lessons, new school uniform (he's a chewer). It also helps me pay for a national trust ticket so I can take him to an enclosed park. It's those things that help with your & your DSs daily life.

Children with Aspergers need more life experiences not less. It takes far longer for them to learn the life lessons picked up much earlier by their peers. The more experiences you give your son the more he can draw on in new situations. You just need to carefully control the experiences so not to overload his sensory system or place him in danger.

It's a huge responsibility having a child with autism so it's not surprising that you're so tired. Your DH is placing an unbearable amount of crap on top of all that. I'm not surprised the consultant said what he did to your DH as it seems your DH only wants you and DD.

Any child with autism is vulnerable and as his mother you need to protect him. DS first.

purpleroses-Your question is something what i was looking for on here, other peoples insight & advice. What you've said I've not really considered, but your right & it's definately worth exploring if he is willing to. It would help for myself as like you say, I'm not left thinking I'm the only one who can deal with him. Thanks for that & I'll get on to it.

I've not read that particular book so I'll have a look on amazon for it & give it a whirl..it can only help!!!
Coffeeinapapercup - thank you for all your advice, as with others. This post has given me the confidence to stand up for us all & try another avenue of looking for some support for us all. Like you say, DH is a big boy & his needs don't really come first. If i'm not functioning properly & getting a proper grip on things, no-one else can follow.
I'm not sure how to find these support groups but hopefully with a bit of internet searching I will find something in the area.
Things can only get better...they really can't get any worse, so I'll keep that in the front of my mind :)

And...

You are also a carer of a child with autism & adhd. There are schemes that help carers eg vouchers for relaxation massages. Let your doctors know too. Carers in general are under a lot of pressure and anxiety. There will be local organisations who can help you with this too.

ahem I know a very good support group but can't reveal the details without outing myself. you could try googling special needs kids (+your local area). or try the NAS
www.autism.org.uk/our-services/find-nas-services-in-your-area.aspx

I started with the NAS. The connections and opportunities for good quality courses were super. I ended up at a different group that I found through the connections I made in NAS.

can I just say you do not need a diagnosis to claim dla.
just get one of the many people who can help you fill in form eg most councils have benefits advisor.

help with DLA claim

Smile- thanks for your post last night, i didn't see it until id already posted. To be honest I know there's part of DH that probably would prefer if he just had me & DD to himself, and I cant blame him in a way as we've been through so much with DS & he's worn me down & im his mum!
But it's not an option, I've spent too long going down what looks like the wrong avenues & I'm ready to face it all head on now.

Don't you have to have a full diagnosis to claim DLA? What if he failed by a point or so when we go? Would I have to pay back what I've had for him to that date?
It would never occur to me all of this extra help, no-ones ever informed us of it..i suppose it might be one of those things where if you dont ask you dont get. I do like the sound of a nice massage, im always so tense & fraught i think id probably fall asleep snoring!!

Thanks again coffeeinapapercup for the advice, I'm going to have a look today & hopefully track down some support locally.

The senco at DS's school told me she's thinking of putting a support group together their for parents, meetings etc. I said definately put my name down for that as it would be really helpful hopefully.
DS did another support group yesterday & rated extremely high for concern with his answers etc. I am getting a copy of all of this to see what he is saying etc as obviously i get nothing in the way of talk as his mum!
That's not from lack of trying on my behalf though.

You don't need a diagnosis to claim DLA but it can help. In your position I'd think about how long its likely to be until you get diagnosis. In your case personally I would probably wait as it sounds like some from of diagnosis is probably imminent. But I do know people who haven't. Dla is just about the amount of help your child requires to fulfill their needs above other children

Definitely try the Explosive Child for a different approach to eliciting information as his mum - I know our DS is much younger, but it has been revelatory in how asking questions differently can make a big difference in terms of how much DS tells us. Plus we are also listening differently .