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Step Parenting family with child with Aspergers-on the brink-really need some advice/help please!

2 replies

emma16 · 09/10/2014 04:45

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.

OP posts:
Heyho111 · 25/10/2014 07:36

You must be on your knees.
It's the right thing to do to get a diagnosis. But what you need is support to understand how autism effects your son and stratagies to make life easier for him and consiquently then you.
Please ask CAMHs to give you support with this.
You will find your son will respond to strict structure.
If he can read make a very simple list of what's happening that day.
Breakfast, get dressed , school , home. TV, diner, homework, computer, free play , pjs etc
Set in turn taking activies. Joes turn on the computer, set a 10 min timer when it goes off it's millys turn on the computer.
He will respond far better to this than bring told.
If your going out to a resturant etc google image pictures of where you're going. Show him these over and over to prepare him. He will not like change or anything new so it will help him in new situations.
There are so many stratagies and info you need to know I could type for a month.
Push for help. With the right help and support life will become easier. I promise.
I wish I could give you more.

merrymouse · 25/10/2014 07:49

Can you take things a step at a time?

If things are very high stress at the moment it won't be helping anybody. While it is true that ASD doesn't go away, things can change and get better.

I don't think your DS living with his father is an option in any way, shape or form and your DH has to get to grips with this fact. However, if your DS's father can step up, would this give you and your DH the breathing space to get to grips with your son's diagnosis and start using the strategies like the ones Heyho suggests?

However, I'm not clear from your post whether you think your son's dad could look after him even for a weekend?

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