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.

Definitely start filling in the form now. It takes a long time to do and you need to support it with recent evidence, so if he's being seen by eg GP, Educational Psychologist, Occupational Therapist, SENCO, CAMHS etc all these reports help support your claim. If the evidence is not recent then there's an argument that your child doesn't need the support at present.

Cerebra have a good help guide for completing a DLA form. Your local CAB can help too. To give you an idea of timings I submitted mine in April, got rejected, appealed and met with the Tribunal panel in December (who were lovely), won appeal, and started to receive DLA in April the following year (backdated!). It can take yonks.

Also don't underestimate how mentally exhausting it can be to complete this form as you have to face your DSs difficulties head on. What's normal for you is so not normal for most families. The form forces you to realise this.

I know what you mean about not knowing about the support. I didn't either. It was a friend of mine that pointed out one contact. This contact was fab and gave me loads of advice and contacts for other people. I cried at that first meeting as I didn't know support was available. It's common apparently!

Chin up. There are people who can help both you and your DS.

Thank you both for the advice. I'll definately start having a proper look through this claim form and best way to go about it etc. Tbh i did have a quick browse earlier on the link provided and it set my mind going with all the questions and i quickly realised actually how much there is to DS compared to DD. Sounds awful i know but you kind of lose sight of how different they are when your in it, you just adapt. Its not until someone outside of your family poses questions or points things out, that you realise.

I am a little wary in submitting the form just based on if he doesnt get full diagnosis, id feel like im taking money im not entitled to. But, the website said you dont have to have full diagnosis so i suppose that makes things a little easier. I'll start asking all people involved to send reports on to me etc so i can build a file up.
Im really shocked at how long that took you Similie!! It must have consumed so much of your time that was already full as it was!! Glad you got sorted though :)

Me too. Hopefully yours won't take as long.

If there's any pressing issues at school you can ring the school's educational psychologist directly. Their details will be on your local council's website. Schools only have a small number of hours available but by ringing them myself I wasn't using the school hours up.

I spoke with my DH tonight, didn't go too well.

I don't think I mentioned that my DS has threatened to kill himself twice now, the last time being around 2 weeks ago. Well his step mum sat down with him when he was there to try & talk to him & find out what was going on his mind.
She said it's so hard to get anything out of him, he's just so tight up there..which i know obviously! But his response after a while was he just thinks we'd all be better off without him & it'd be easier :(
She got very emotional when he said that & she totally reassured him that that was not something he was to do as we all, esp me, would be completely distraught & love him very much.
Her & DS's father are planning on a 2 week holiday next year just the two of them but they have booked a week away with DS & she was talking to him about that. He was very matter of fact that it was ok, he knew he wasn't going away with us anyway because we don't take him on holiday

Both myself & her were emotional on the phone when she told me. It just made me think, coupled with the headteacher saying how you cant not take him on holiday or give him experiences, that we were potentially making matters worse.
I can't have my son thinking he's worthless or not loved because we don't take him away with us or he feels like he gets pushed to his dads for me, DH & DD to do things as a family.
Maybe ive took it too far but it really did strike a chord with me & make myself feel i needed to be more honest.

So I spoke to DH tonight & said I can't agree that every weekend when your not at work, DS goes to his dads. What if one weekend he just doesnt want to go & wants to stay at home? What do i do, refuse him so your not upset that your weekend has been 'spoilt' by him being here? I don't want to spend the next however many years going away & leaving him at home. We did it this year & i hated it. I felt so guilty to myself, what other people would think etc. And honestly I can't promise I can do that every year. Esp after finding out how he feels about himself.

DH feels like it's all on his shoulders now what happens to us as a family. No he doesn't want to spend money on taking DS away because in his eyes he ruins the time he's looked forward to after working hard & wanting some down time..the only way to keep DS to behave as such is constant babysitting, guiding, attention, as you all know!! He doesn't want to do that on holiday. Why am I taking away the two things he's asked for to compromise on to make us work as a family he said? I said im more than happy for him & DD to go on holiday together & ill stay at home with DS if that would work..I would easily go without to keep DS happy & secure..no he doesn't want to do that because obviously he wants his wife with him.

He said im basically putting DS's feelings over his, and yes i suppose i am. But do i not do that & risk my son growing & feeling like he does plus the guilt i feel as a mother constantly leaving him so he doesn't 'spoil things'?

I didn't want to have that conversation but i needed to because I'm feeling more confident in being able to deal & learning more about dealing with DS, and I can't hide how I really feel. Well maybe I can but ultimately it would come out one way or the other wouldn't it.

Your DH is an adult. He doesn't give a monkey's behind about your DS and is making that really obvious to you. How dare he put his own selfish needs above your DS and then try to guilt you into doing what he wants. It's no wonder your DS is feeling as he is because that's the vibes he's getting from your DP. I'm so sorry you have a crap partner.

Look at the behaviour of DSs step-mum then compare it to your DP. I cannot see him compromising at all, just more blame to you. Would it help you to talk to GP about this situation, just so you can work out what YOU want to do? You're getting pulled in all directions at the moment.

With your son, does he have any counselling? It sounds like he needs someone external to trust too who can work with him about his feelings. He will have plenty of them, he just doesn't show them very well.

His stepmum sounds fab btw. Glad she's supportive of you both.

Also I would ask MN to repost this in "Relationships" as you could really do with more advice and the step-parenting board hasn't got a lot of traffic.

Emma16, while you and your family are struggling to come to terms with your DS's diagnosis, you really need to come over to the Special Needs board and start a thread there. My DS was diagnosed with ASD 5 years ago when he was 13 and the support and advice I got from the amazing posters there was a lifeline for us all.

Something your and you DH must take on board though is that often holidays = hell for people with ASD. Being taken out of their home environment and normal routine and being exposed to long journeys and new experiences can make them incredibly anxious and trigger meltdowns.

This doesn't have to mean you can't give your DS different experiences and go to new places, but it requires careful planning, and activities have to be based around what HE can cope with. This might mean short UK quiet self-catering breaks in rented cottages by the seaside (to avoid the 'strange foods' panics ) where you can stick to usual bedtimes, take favourite bedding, toys, DVDs etc, and pop back to chill out after tiring activities, rather than long haul foreign holidays staying in hotels and visiting funfairs and leisure parks. It also means being very flexible and prepared to change plans at short notice if your DS starts getting stressed.

It can feel tough on the rest of the family sometimes but it doesn't mean no holidays at all, just different ones! .

One of my son's has aspergers. This thread has made me cry.
Your DH obviously doesn't give a toss about your DS. This has obviously all already damaged his self esteem terribly.
My son loves holidays, including Florida. He just needs an itinerary and watches you tube videos to get prepared for what we will be doing. Clearly your sons sensory issues might be different.
But your son won't be able to relax and enjoy anything at all with your DH around. You have aid your son doesn't have the mental capacity to pick up on your DH's attitude towards him. I doubt that very much to be honest. Being sent away is far from subtle.
It can't be good for your DD to witness this appalling treatment of her brother either. So it's not necessarily best for her that you stay married in my opinion.

I asked DH if he would consider coming to counselling but last thing he said was he didn't know. Personally I think it's because he knows they will agree with what I am saying & he doesn't want to hear it.
From an outsiders view he probably sounds horrendous, he isn't though. There aren't many men that would have stuck around this long & put up with it all, i partly take some blame myself for the situation we've got ourselves in.

I should have been more confident in standing up for myself & my son, but I think I got too influenced in what DH was thinking the best thing to do that I kind of lost my way. Plus the whole diagnosis was completely new & I probably should have thrown myself more into rather than trying to juggle DS, DH & DD...plus myself & my own thoughts.

DS drives me insane at times & I have to mentally think about what im going to say before i say it, hold my breath when things are getting tricky or he's going off on one. So i totally understand how hard this must be for someone who hasn't got that bond as biological parents have.

DS's step mum has been amazing, she really has. It was her that stepped in earlier this year when i was on the brink of a breakdown with it all, DH was going on about DS going to live with them etc & I just couldn't handle it all anymore. She said she would take DS with no problems at all, she loves him like her own but before that could happen we need to try him going to their house every weekend so that we know we always have a break just the 3 of us. It was hard with the travelling back & forth but we did it for 3 months or so & I felt things had calmed down a bit so went back to DS going every other weekend etc. She talked & talked to me many times about it all and has been great. Last time i spoke she gave me a bit of a pep talk & said i was losing my confidence, could see it in me & I needed to get it back & stand up for myself etc.

For example tonight DH said about going to Pizza Hut for tea, said id mention it to DS but as soon as I did this veil came over his face of uncertainty/worry etc. He wasnt expecting to go, thought we were having tea at home & he doesn't like eating out as he struggles to eat food prepared by someone than me. Doesn't like using their knives & forks, inspects them for any kind of dirt. Then when food come he analyze's it to an enth degree! Said its fine, we'll stay at home dont worry etc.
Told DH & for the first time ever he said nothing at all. But how long can he keep that up for? I have a feeling he said nothing because I've said we accept the way DS is & that's it. Which credit to him, he's trying. But i just cannot see it being sustainable.
DH is very very alpha male, in my hearts of hearts I can't see this lasting for the next however many years.

DS has started learning support at high school now which is helping. He's been took out of Rugby at PE as it completely freaks him out the whole contact, shouting, touching each other etc..he struggles with the changing room experience too so I'm glad they've said he can go to learning support instead.

Keep at it. Get things working better for your ds first. Sounds like you actually have some pretty great support behind you.

Everything else can wait. And, if it's worth your while, will wait

Hi, we're moving this thread over to our Relationships topic at the OP's request.

Thanks to everyone who's contributed so far

As a teacher I see parents torn apart by children with complex needs and it makes me terribly sad how often it ends up just being mum left to deal with the problems - quite often literally when dad leaves and divorces mum.

Please don't feel bad about having someone else care for your son as often as you can. I disagree with people who think your husband isn't being caring towards your son - it sounds like he's been amazing but children with complex needs are a massive challenge and for his, and your, mental health and the stability of your family you need time away from the stress that caring for him brings. I would even seriously consider a school which offers residential care. Then you may even be able to look forward to the times you see your son.

I really feel for you, it's such a sad and difficult situation to be in.

pippin I strongly disagree with you. Did you miss the part where her husband would basically never see the DS, because he would send the DS away every weekend that he wasn't working?

I do agree that the parents need down time, but that should include time away from all of the kids, not just the one who isn't the husband's birth child.

I agree with you pippin.

I just saw a man whose got to the end of what he can deal with, trying to hold it together for the sake of his DW and DD. Yes it was stupid. Yes I can imagine he will at some point look back and regret it.

But the OP is in a fairly extreme set of circumstances. You don't always behave at your most rational when you are in the centre of the storm and you can't see the end

DLA is based on needs not diagnosis. HeadDoctor's link above us very good.

I am just starting to learn this stuff, too.

Just wanted to say you sound like a woman who is doing the best possible in a very difficult situation.

My immediate thought is, if it is possible, could you arrange a short holiday asap for just you and your ds? Somewhere you could cook for him, spend time together, chat about what he wants? It must be so hard for you all.

Sorry, on the mobile site and lots of posts didn't show up.

I may be coming at this from the wrong angle but if ADHD is confirmed your DS should be assessed for and prescribed medication. It makes a difference for my DS (also ADHD and ASD)
Good luck. It can feel overwhelming but you do clearly care for your DS. I'd be inclined to lobby for CAMHS app to be brought forward. Try contacting the commissioner of children's services. This delay is putting your famy wellbeing at risk.

When you described what it is like taking your son out to eat, well, that would certainly be hard on me, and I think most adults. Your DS probably is not up for a change of plans. I get that. But he really only likes food you cook, he has to inspect the silverware for cleanliness, he then inspects the food in minute detail? That would be so irritating! It does not sound like a fun outing for anyone.
To the rest of you who have children with Asperger's, is this how your kids behave?

Hansie did you mean to be so harsh/judgemental (those disabled people are "so irritating"...)? I'm going to proceed on the assumption that you are seeking to understand.

On your specific question about going out to eat, yes, 5yo DS has started to exhibit those types of behaviours. We have to prepare him before going out to eat at a new place, and he clearly finds it very stressful. By going slowly, and leaving open the option of going to somewhere more familiar instead, we have been able to navigate it.

This is all very new for us still, so we are learning. It helps for us to accept that DS is not consciously choosing to find these things so difficult, any more than somebody who relies on a wheelchair and therefore finds some building hard to access has not chosen that.

Also, part of the disorder is that it is hard for people with ASD to imagine what a future event is going to be like. So, for them, every outing to a new place is akin to what it would be like a neuro-typical person to think about going to live on another planet (i.e. pretty scary).

Most children go to stay at their dads every second weekend so that's normal aspergers or not. They go there to have a relationship with their dad. A lot of families with someone on the autistic spectrum get respite as its tough going. So neither of these things are wrong in themselves. Your D's s dad is as much responsible for him as you are. The big problem here is that its not done as a rejection thing but as a good for him thing to build a relationship with his dad. How does he get on with his dad? Does his dad cope well with him? Its so so important that he is not sent out of rejection. Is his dad not wanting him lots anyway. Can he not go there out of a dad wants you can't wait to see you..rather than get out of here..I'm sure there are families here with an autistic child who send him to granny's for a break or who get respite so they can give other children some attention. None of those things are wrong. What's wrong is doing it out of rejection which sounds like what your dh is doing. That is so wrong for your boy for you and for your dd. Maybe now when you have more idea of why your D's does what he does ye can all make a new start. Has your dh read up on aspergers..is he interested in what school, psychologist etc are saying..is he keen to learn..if not he is totally out of order

Our 11yr old has aspergers. I am confused by what you mean by getting a "full diagnosis" - you either have a diagnosis of ASD or not.

My son's behaviour deteriorates when he is anxious. Anxiety is a HUGE problem for these children and you have to find out what is causing it to then find ways to reduce his anxiety.

In yr 6 school was the cause and in the end they stepped up and gave him the support he needed which had a direct affect on our homelife. If you think school is a problem then they have to BY LAW give him the help and support he needs.

You can't just spring a change of routine onto him either ESPECIALLY if it is something he isn't comfortable about (pizza hut) as that is just going to cause problems.

I have three children, the eldest is a similar age to yours and he has High Functioning Autism. My DH is his stepfather.

My middle child is healthy and my youngest is severely disabled.

Your DH is being indescribably cruel to your son. Your posts are so upsetting to read, he's still so very young

Men can, and DO, step up and cope with disabled step children. He is excluding your son and alienating him from his family.

I know how hard it is, I really, really do. It's bone shatteringly exhausting, all of the time.

But your DH is being cruel. I feel so very sorry for your son, please don't exclude him from your lives any more.

There is a lot of support out there, you don't need a diagnosis to claim DLA. Please, please think about the impact this is going to have on your little boy in the future