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.

Jesus - Hansie! Yes, as a mother of a boy aged 9 with Aspergers I can tell you that food issues are massively common for kids with ASD. There are a number of elements to it - sensory (they have a sensory system that is on high-alert a lot of the time. You know how you feel if you narrowly miss stepping out in front of a bus? a lot of the kids feel like that a lot of the time due to sensory overload, plus heightened issues with taste, smell, touch etc).

Also, if you are exerting a huge amount of energy just getting through the bloody day, coping with school, millions of social rules and interactions that don't come naturally to you, it's exhausting and a lot of children play out their stress in terms of behaviour at home and also trying to control some very small element of their lives - so food, eating environment etc is one of them.

So to answer your question, that was badly worded and quite offensive, yes this is common and yes, it's rather irritating. But contrary to popular belief, the kids aren't doing it to be bloody minded and as parents we will have tried EVERYTHING to get the child to behave "normally". But it doesn't work like that.

To the OP I find what you & your son are going through heart-breaking. I find it incredibly tough dealing with my son, and can't imagine having to do so if he wasn't mine biologically. That said, part of having a blended family means stepping up and putting yourself in the mindset of accepting the child - no matter what. Ask him, if your daughter had been born with this disability, would he make an effort to read, to understand, to take a step back when it gets too much. Of course he would - so the same love must be shown to your son.

I understand that the condition can make these kids much less "likeable" than other children. I know my sister for example adores my jolly, sociable girls but struggles with my son who can seem cold and uncaring.

Personally , I think you need to make family therapy & starting afresh with your son, an absolute requirement, or the relationship is over. This is not a child who is deliberately being horrible. I always tell my eldest daughter - no matter how hard it is for us dealing with her brother, it is so, so, so much harder BEING him.

We had a similar holiday in Florida that had some v difficult elements. (despite doing all the ASD planning adjustments etc) and my son actually said to me during a melt-down " why can't I just be like a normal child, any normal child would be so happy to be in Florida". A lot of kids with ASD will be thinking this even if they aren't thinking it. Shame is their worst enemy. And your husband is using shame against him and it will damage him long term.

I think you are doing a great job and I can completely see how you gave found yourself in this situation. Daily life with a child with special needs is so hard, and we make lots of little decisions just to "get through" and avoid the next melt-down etc etc before we realise that we are on a course of action that isn't ideal.

Last thing though, I actually don't think the "family outing" thing is the big issue here. I am a big fan of "divide and conquer" when it comes to my son. One of us will take him on an activity that he will enjoy. He thrives in a one on one situation - and that would be with you or with your husband. Then try to do small things all together at home for short periods, something that he enjoys. I think your aim should be that your DH develops a bond with your son instead of dismissing him out of hand. He needs to man up and realise that he is an adult and your son is a child, dealing with something really hard with the added issues of parents who are no longer together.

I wish you all lots of luck

Parenting a child with AS is extremely difficult but what has helped us is gaining a greater understanding of our son's difficulties. Once you know that a refusal to go out is due to anxiety rather than bloody-mindedness you can deal with it much more effectively. So for a meal out we would give advance warning, go somewhere where he had been before, pick a quiet time and give an element of choice and if the cutlery causes anxiety then take a set from home with you. There is information out there - Tony Attwoods book is a good place to start, The Explosive child as recommended above is good, Autism West Midlands and NAS run anger management course which contain good de-escalation techniques. But both of you need to take the techniques onboard - if your dh carries on treating him as a "naughty child" then I am afraid that is what he will get in our experience.

I have two dc with ASD. We go away a lot. To people who didn't know dd they'd say she "ruins" our holidays, she does not. It's hard work, yes but it's worth it and I will continue to take her away.

In a nutshell as you've had loads of great advice I can tell you I would not remain in this relationship. He has made it clear that will never accept your ds and the challenges that come with him and you're being torn in two trying to do the right thing by both of them. Have you tried taking your ds for meals and breaks alone? My dd copes MUCH better when there are less people in the group. It's the flow of interactions between all members of the party that she can't understand or keep track of that is one of the main reasons that causes her to become stressed out and enraged.

I can't see why your DH needs to be so either/or. Why can't you just all accept that you may not be able to do things as a family of four? After all he's so eager to shunt your ds off isn't he? why can't the rest of you do your thing when ds is at his Dad's? Seems there's plenty of time to fit it all in.

"That would be so irritating!"

Tough.

I honestly can't thank you all enough for all the help, advice & support from these posts. I often feel very very alone in this situation but it has helped me incredibly to hear that other people are in my boat, what they would do, suggestions etc.

At the moment things aren't great between DH & I :(
I can't remember my last post but I'd told him DS going to stay at biological fathers house could never be an option. Apparently that has had a massive effect on him as he has always took great pride in thinking that our marriage was my number 1 priority, not my son. So for me to make that decision & effectively shut that option of, has been incredibly hard for him.....

I blame myself in a way as looking back now I probably should never have agreed it could be a possibility. But i was bogged down by our disruptive life as a family, desperately trying to find or think of an option that could work & keep everyone happy...without being true to myself.
I've apologised, said I'm sorry he feels this way but I'm not sorry for standing up for myself & putting my son & my needs as a mother first, regardless of how that makes him feel.

I feel particularly hurt when he said; 'It’s not about the specifics of whether DS went to his fathers or not, I always knew that would be a massive deal and potential marriage breaker for us, it’s the repercussion of your decision, it’s a line in the sand, the fact that you have made that decision knowing what it may mean to us. It’s a massive shift in the dynamic of our marriage knowing it’s no longer your no.1'

For me i felt so incredibly hurt as in my eyes he was saying that he would have took that chance had i agreed to it, in sending DS to his fathers, knowing that we probably would end up splitting because the grief of losing my child in my life every day after bringing him up for 12 years would be too much toll on us. But he would have done that because it meant he, DH, was kept as number 1 priority???
I really don't know if that's just me but that's how it felt to me. And i really don't know what to make of that.

My son's diagnosis is an initial one from back in October last year. High school has been trying to push Cahms but the multi disciplinary team that makes up the full diagnosis, is another year away.
We are getting support from high school though, he's been observed all the time, goes to learning support etc.

Hansie im guessing you just don't know about the whole asd thing, which i get & i understand. But if you dont then you should really show a little more respect in something your uneducated in. Parents of kids with ASD live a totally different life to a 'normal' child & yes there are lots & lots of times im irritated to hell, but that's not DS's fault. He's just a child & I have to learn to deal with the way he is which is what I've been trying to do.

DH has said that given my ultimatum of, DS is going nowhere, you need to learn to deal with him, accept him, and live with him happily to an extent, or i can't see how we can carry on living as a family of 4, he does want to try as he doesn't want to lose me or DD. However, he said he "ran out of patience with DS 18 months ago, doesn't know if he's due another fresh batch soon. Can he learn to live with him? he worry's he cant when he's faced with an 11 year old crying like a 1 or 2 year old on a morning his reaction to that is not a good one. He try's to control his reactions for all our sake's but its difficult. That fundamentally DS isn't going to change."

I struggle to find the positivity in DH ever really being able to adapt our lifestyle properly..can i be blamed for that?

I have just bought three books, 'can i tell you about asperger syndrome', The asperkids secret book of social rules' and Aspergers syndrome a guide for parents & professionals'...so I'm up on my night time reading right now!

I think if you phone CAMHS and tell them of your DS' suicidal thoughts, they will bring forward your appointment - ours certainly did.

My teenage DS has similar issues to your DS and we too have had many, many disastrous days out and holidays away. The change in routine is just overwhelming for him (even if he's been well-prepared) and I now accept that he's never going to enjoy that, so arrange to do things with him that he does enjoy instead - most of which are in the house, rather than out of the house. Is your DS better with one-to-one with you, than when you are all out together? If so, don't feel guilty about not going out as a family, and divide and conquer instead.

For example, DS' sibling is an absolute foodie whose idea of heaven is to eat a 5 course meal in a Michelin starred restaurant. Unfortunately, DS often ends up crying under the table when in a restaurant, stuffing food into his mouth with his hands because he can't bear to use cutlery. The only way of me managing this is to split the DCs and do different things with them. As long as your DS doesn't feel excluded - i.e. he gets to do what he wants, and isn't forced to do the things he dislikes, then I reckon that's ok.

BTW we get regular help from CAMHS to help with DS' anxiety/violence; attend a Sensory Clinic; and also get help from an occupational therapist - so there is lots of help out there, although the waiting lists are very long.

So he is hurt by the fact that he always believed that HE was more important than your child but you have now proved otherwise?

I am sorry but this man is awful. I could stay with someone who felt the way your H feels about my dc.

We have an 9yo Asperger's DD possibly with PDA too and to be frank she makes life a misery.
Everything is difficult, a battle.
Trips out and holidays always end up ruined by tears or meltdowns.
It's made our marriage difficult too because it's so all consuming.
Try and find a local support group or activity group for families with additional needs.
It really helps if you can go some place where people understand (because parents with NT children never truly get how difficult it is.

What about family therapy? You are right - your DH is not going to change unless he is given tools to do so. (he still might not, but something has to change).

I think you need to push, via your GP to get him seen by CAHMS and stress your marriage is at breaking pt. they may be able to arrange the therapy.

If you have an initial opinion and have anyway of getting to London you can push for a Tier4 referral to Great Ormond Street - David Skuse's team is one of the top two in the UK. GPs need a bit of pushing - but we went this route.

www.gosh.nhs.uk/medical-information/clinical-specialties/child-and-adolescent-mental-health-services-camhs-information-for-parents-and-visitors/services/national-centre-for-high-functioning-autism/how-to-refer-cs/

Oh Emma I'm with Nicki here. He thinks he is more important than your child. Your marriage shouldn't be your no 1 priority. Your children are. The fact he doesn't think that is very worrying (but not unsurprising given the rest of your posts). It's all about him. He is being unbelievably cruel about your son. He doesn't seem to have any clue as to what being a parent entails. I've found most of your posts very upsetting and rage-inducing (against him) tbh.

And you are not to 'blame' for this. Of course not. Asking a mother and primary carer to leave their child is also cruel. He created the ultimatum by suggesting this. It is his behaviour that's disrupting the family.

And you know what he isn't putting the marriage first either is he? He's putting his needs first. He's prepared to walk away. It seems it's only you that have to put him first. He doesn't actually have to reciprocate.

I'd be thinking hard about what you want out of this relationship and whether he can deliver, because believe me, that's what he is doing.

To those of you I offended, I apologize. I commend parents who cope with difficult behaviors as it cannot be easy. I think I have elements of Aspergers myself. I try to avoid loud, garish places. I control my environment, or try to. But a child does not have that choice.

You're apology is accepted, Hansie.

Ahhhh! Your.

He believed you felt your marriage was more important than your son & he was PROUD of that?! Seriously?! I'm truly sorry OP but I think he sounds foul. Does he think your marriage should be more important to you than your DD as well, or is she allowed to be a priority?

Thanks Hansie .

NickiFury - basically yes. It's what it feels like. I've feel like I've been made out to be the bad guy because for a period of time I did go along with the idea of DS going to his dads, because I was struggling to deal with him, DH, myself & I felt our world was spiralling out of control...i grabbed any kind of idea to try & sort out life out our life.
He said because i agreed with that idea, as a result i would have given it a go. But that's my point, i wouldn't have because the more i felt i was getting pushed into that corner, the more i realised i could never send my son away.

So now, he's turned things around & said a new acceptance from him is needed if we are to work. He knows its possible because its a new chapter with new rules..by that he refers to the new dynamic of our marriage & the stark choices that has presented him with.

I was like What??! So after all these years of you hating that boy, tolerating him for the sake of me, excluding him from everything we do as a family because he 'ruins' things, never wanting to take him on holiday, wanting to send him to his dads, now, after pushing me to this point, you can all of a sudden have a miraculous turn around & be able to live with him?!

I honestly don't know what to think. I feel annoyed that its took for me to say i'll go it alone with my kids, for him to step forward. Don't get me wrong he has tried & tried over the past 8 years with DS, he really has. But i am struggling to put any faith in his words that somehow he can all of a sudden change & be able to to deal with DS.

CAHMS were told about DS suicidal thoughts by high schools senco. She rang CAHMS & pushed them for the multi disciplinary to be brought forward but they stood firm that they can't. I understand because how can i say my family's needs are any greater than another family in the same situation?
I have received an appointment for them for next week for a Child & Adolescent Cognitive Behavioural Psychotherapist for DS so at least they are recognising that we need help.

Yeah he's always stood by that our marriage is number 1 priority & kids are an added extra. Some might say that's nice, some might say it's wrong. What i know now is no actually my children are number 1.
I have said I'd love to see what he'd do if we did split, he meets someone else & in 5-6 years time when DD is being a total nightmare, and then he tells me that he cant take her on holiday anymore or have her at his house when new woman is off work because she does not get on with DD whatsoever!!! How the tables would have turned!

I think I'm considering giving him a chance to see if he can magically change, if he also agrees for us to get some help as a couple, and put a time on it. What do you think?

I don't get sad at much I read on here (too hard hearted ) but this has really upset me, reading your story. I can see why you took the respite when you could and you can stop feeling guilty about that. Your H sounds manipulative with his "well you said......" In order to keep things going HIS way. I couldn't bear to hear anyone talk about my lovely boy or girl and be so terribly intolerant the way your H has about your ds .

You must maintain your current stance of "shape up or ship out" and show steely resolve now, he must know in no uncertain terms that ds comes first and he must make his decisions accordingly. Personally I could not live with a man who had been so intolerant and yes, cruel towards a disabled child. I could not find him attractive or loveable in any way. However only you can know your relationship dynamic and whether he is worth keeping around.

Why should anyone come first?
A family should a team.
I wouldn't think anyone would react well to being told x comes first.

emma sorry that you're having such a hard time.

I agree that feeling guilty is not going to help anything. We are all just trying things to see if they help, and you were doing the same.

I think you should go with your instinct. Is that to give him a chance to change, getting some help as a couple?

I think you have to accept that your dh as your son's step father will never have the same attachment to your son that you do as his biological mother. I'm not judging, it's just the reality.
That said, I think things can improve with some support.
I have a ds of similar age with asd and adhd and it was extremely difficult for our family for many years. It's still not easy but we are getting there.
In our house it was me that did all the reading, all the appointments and all the organising. I got to the place where I could understand ds faster than dh as a result.
We have since had counselling which involved learning to understand the world from ds's perspective. This helped dh hugely.
Things are hard for a child with SN, and dh now really gets that.

Biologically, it's not realistic for a mother to put the relationship of the couple before that of the children. Mothers are hardwired to protect the interests of their children above all else. There is a conflict between partners and children and it's difficult but it's how we are made.

Your son needs your support and perhaps with some counselling (linked to your son's diagnosis?) your dh will see that there are ways forward that include the whole family.
If he doesn't it's up to you to support your son.

I really sympathise with the difficult situation you're in, OP. I have a 9 yr old DS with AS. His behaviour can be incredibly challenging and we have had some awful patches where both I and DH (his biological dad) have been worn out by it all and considered residential care or boarding school (have never actually gone through with it...but at times when DS has assaulted me or threatened to kill his father with a knife, it has been a tearful conversation, I'll admit).

He was diagnosed at 5 yrs old, though, and has a Statement and a fair bit of support (not enough outside of school, but we do get some respite). Without all of that - the diagnosis, a full understanding of autism and the support from the school and various autism charities - we would have broken down as a family long ago.

Its bloody hard. You need more support.

However, your DH's attitude is really worrying. The fact that he thinks he should come before your child is immature and disturbing.

And there is absolutely no shame in needing respite from your own child. I have and do!
But I think you are conflicted because the respite seems to be turning into avoiding and that is not healthy for your ds nor for yourself (feeling guilty).

Yes agree that families should be a team, but allowances must be made for family members who cannot participate on an equal footing because of disabilities and who aren't around often enough, having been shunted off out of the way because their disabilities lead to problematic behaviour.

Not only that, there's not been much "team work" going on for years has there? It's all been H stamping his feet about how awful his wife's child is.