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Step-parenting

Connect with other Mumsnetters here for step-parenting advice and support.

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Original poster

Cannot cope anymore with autistic step son

53 replies

Mummyk1n5 · 25/07/2017 22:38

I'm really really at my wits end and don't know what to to do anymore. My step son was 18 months old when I came into his life and he is nearly 13 years old now. At age 6 we got the autism diagnosis. His mum cannot cope with him, she therefore never bothered, never took him to see santa, never did a birthday party for him, step son is with us most of the time. We've always dealt with his educational needs too. I've always been there for my step son but I now cannot cope, anxiety is so bad, I feel like leaving my husband who I love so I don't have to deal with step son. I feel I'm not aloud to not be able to cope. We have two other kids together too. Unless you've had an autistic step child you will not understand how hard life can be. Family and friends have always praised me on how good I am with him but my sanity has gone and I'm losing the plot. I went to see the doctor after plucking up the courage to be told I'm fine and go and get on with it!! This has been going on about a year now and things not getting any better 😢

OP posts:

GreenTulips · 26/07/2017 23:14

Then you need to say no to your husband

Step back and let them parent their child -

I'm sure you've done more than your share but they are both taking the piss

Can you go to your parents or friends for a few weeks so they can sort it out between them?

Pack up and go so at least your husband starts taking your needs seriously

GreenTulips · 26/07/2017 23:15

...and here we have a good dad getting to see his child and it's a problem

Yes for the step mother doing most of the care

ohtheholidays · 26/07/2017 23:30

We have 5DC and 2 of our DC are autistic,DS15 and DD9 and our 14 year old DD is now being diagnosed as being autistic as well and I became ill and disabled within a year of having our youngest DC.

It is fucking hard work and there are times where I've felt like running away or ending it all for myself.

You are allowed to feel like you've had enough and no one has the right to tell you anything different.

We don't have any extra help or real support but if you can get some make sure you do!

ProphetOfDoom · 26/07/2017 23:44

Like the idea of you and the younger dcs taking off for a weekend to family/friends to recharge and letting DP actually feel the full force of being the sole parent. Tell him you'll get doing it more unless he steps up, does more of the direct parenting himself and sorts out more equitable weekend access with exW.

VinIsGroot · 26/07/2017 23:58

Of course DH is happy to have him full time ... It's his son!!!

I'm sorry things are hard for you but it's a genetic condition and be aware there is risk if your DC having it too...more risk if they are boys. If High functioning then it's difficult to diagnose until they are older .... It ex in her own or does she have a partner !??

I have 2 DC with autism..one HF and the other severe with other disabilities like epilepsy .
It's not easy and I don't get any respite care.... My son thinks 2am is the morning and that's what time I get up for the day with him!!!

I'm so sorry that life is not a bed of roses ...but I totally am in awe of your DH...he sounds like a wonderful man who knows that his DC are his priority! Wish there were more men like him out there!!!

GreenTulips · 27/07/2017 00:06

but I totally am in awe of your DH...

Why? OP looks after him

TatterdemalionAspie · 27/07/2017 00:14

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

potatoscowls · 27/07/2017 00:31

Poor boy :(

NotMeNoNo · 27/07/2017 00:51

Can you have it out with your DH and the ex wife? She must be finding it hard too but she has an easy solution. The best thing for your DS is parents (both) who are themselves match fit to support and parent him. It sounds like you definitely need that weekend free and you may have to negotiate quite fiercely for it.
I had 3 months off work this year due to the stress of my kids SN, I still jump at every slammed door and have panic attacks at night. Don't leave it until you actually do lose it for ppl to take you seriously. (I respectfully suggest)

Emily7708 · 27/07/2017 01:08

OP you have my utmost sympathy. I have a severely disabled child (with ASD among other things) and I often consider leaving my DH just so I can have a break from the hell every other weekend. I honestly don't know how I would cope with an autistic stepchild.

Mumblebeebee · 27/07/2017 01:09

I find this group helps me.

www.facebook.com/groups/ParentsofchildrenwithAspergersUK/

They provide real life, day by day solutions they are living. They are a lovely group. I appreciate this may not be the exact diagnosis, but many strategies are similar.

The stress of balancing family and giving out constantly without respite, and coping with challenging behaviours, is utterly draining.

I wish you all the best, you are being a rock, but you need protection from erosion.

Please go and see a different doctor!

Original poster

Mummyk1n5 · 27/07/2017 15:04

Thank you for everyone's comments. This was the first time I've used a site like this before, I needed to vent and I'm grateful for the replies 😊

OP posts:

HouseworkIsASin10 · 27/07/2017 15:13

You need things to change. Start with planning a break with the younger kids. DH can have his son for the weekend.

You need to know there is light at the end of the tunnel, and at the moment you are not getting that.

Go away and have a think, then tell DH you need a new plan of action regarding what's fair for everybody when parenting DSS.

guiltybystander · 27/07/2017 19:03

TatterdemalionAspie. would you struggle with someone else's autistic child? Probably yes as you are a saint with a polished halo around you.

KickAssAngel · 27/07/2017 19:29

I have a DD who is 13, nearly 14, who is on the spectrum. I also teach this age group and have taught a significant number of children with diagnoses.

In many ways, this is the worst age. I know that each age presents a challenge, but you've got puberty as part of the balance, more independence at school, and they're just physically too big to contain any more. But they are still very much children and can be incredibly demanding. It is hard!

But - you need to get some real solutions in place that will help you. That means ALL of you.

You & DH need to be onboard with agreed strategy. If he's happy to have his son there all the time, is he doing almost all of the care? If not, why not? You need to discuss that. Be brutal if necessary, and do as others have suggested by taking your other two away.
Have a proper contact agreement with son's mum. Have finances that reflect who is doing most of the care. This is where DH really needs to step up. He can't just leave you muddling through. It isn't fair on anyone, least of all his son.
Plan, plan, and plan. Then be flexible. Have a mental/written list of things to do to keep step-son occupied and happy. You haven't given a huge amount of detail (and you don't need to) but have some things lined up that keep him engaged. Some will be 'everyday' things, others might be special occasions only, but always have something ready.
A certain amount of this will be general teenager behaviour. The negativity is quite normal - along with dramatic over-reactions to everything. It just all kind of gets amplified with children on the spectrum as they (in general) have less filters and find it harder to reason themselves into more reasonable behaviour.
What help are you all getting? What support does he have at school? Are there any social classes that might help him? Financial help? Any clubs or activities you could get him involved with? Our local library has a book club for this age group. DD is convinced she's one of the 'cool kids' who go there but I would say it's all the social odd-bods and anxious/spectrum children together. That doesn't matter. The staff do a great job, and the kids really enjoy it. It can take quite a bit of work, but see if you can find something that works.
Remember - this too shall pass. He won't be a teenager forever. I have countless tales of kids who seem to transform as they get older, and only a few who were still a problem. Any parent of a teenager can tell you horror stories. We all live through it. Remind yourself of that.
Have some ideas for how to deal with high-pressure moments. Your other children need a life that is as 'normal' as possible, and you need to get through those moments.
Plan some time for you as well. You & DH both need some down time. If you're both working FT then you need to tag team each other a little bit. Who looks after him when you work and he's not in school? Can you ask them to take him for an afternoon at weekends?

It actually sounds like the mum & your DH are causing the biggest problems. From what you've said your step-son would have a more stable and happier life if they got a proper routine in place that allowed all the adults around him to both care for him and have some breathing space of their own.

Letitrain · 29/07/2017 07:29

Good advice from Kickass.

ItsOnlySab · 29/07/2017 08:05

Op still has not answered who attend ehcp meetings and gives the impression the mother doesn't do much.
I would also like to know the arrangement the father had with his son before op came in.

ItsOnlySab · 29/07/2017 08:11

*attends
Basically trying to get a full picture, does dad have him during holidays every year or just this holiday?

DressedCrab · 29/07/2017 08:13

OP, tell your DH you need to take a step back. When DSS is with you he must become your DH's responsibility to give you a break. Take the other DCs out or have a day out yourself. Have as little to do with his care as possible.

Maybe then your DH will talk to the ex about a more fair arrangement.

AnotherAlias · 29/07/2017 08:44

Good advice from KickAss - having a good structure to day / week etc really helps -so constantly having last minute changes of plan as to who is looking after him are possibly not helping.

Also - even for ASD kids try to play one parent off another, use "behaviour" to get what they want (or avoid stuff they hate) - rules, structure really do help. It is conceivable that mother is a bit strict /doesn't have the tv/ food he likes and that he pulls strings to get back to your house.

Also is important he doesn't get he message that no-one wants him, that he is too much trouble. (Though I wouldn't hesitate in pointing out that specific behaviour is a monumental pita and the impact it has) - but it needs to be clear it is the behaviour that is the issue - he still needs to be loved etc for himself.
Which is a big ask.

Original poster

Mummyk1n5 · 29/07/2017 11:40

DH and myself attend all the meetings, trying to get mum to come along is hard work. Always had him all the holidays forever. She would rather go out with her friends etc than have her son. Been in my DSS life since he was 18 months old, he is nearly 13, DH had him 50% of the time before this. We have structure, a routine and rules in our house, but at mums house it's whatever goes!!! It's so hard for DSS to learn and he cannot cope at times. We've spoken to her several times about this over the years. He goes to a lego club with other kids with autism and he likes this, Lego is a big part of our lives lol!! DSS is no good with hugs, he needs his space, we try to prise him often (which isn't always easy) and tell him we love him all the time. He is so negative and everything is the end of the world. He is good with his step siblings and even will hug my DD who is 3, when she was born he really was besotted with her. He plays with DS who is 6. DSS needs to play with toys still so having the younger ones and their toys helps. It's hard at times to know the difference between auty and naughty but the teenager in him that's starting makes behaviours worse. School are good and he is doing well there, happy with school and we communicate often.

OP posts:

AnotherAlias · 29/07/2017 12:10

Wow that is hard (re mother's attitude).

I don't mind the lego. It's the train monologue in our house that does my head in. I could go on master mind on the topic of "The makes and models of rolling stock used by each train operator in the UK" -

Magda72 · 30/07/2017 00:08

I would think that a kid with his issues might be happier with just one home with access to the nrp - I can't imagine that the back and forth between houses is helping him. Kids with autism need stability & routine & I don't think 50/50 is a viable option in this scenario. Your Dp & his ex need to thrash this out & rp should then receive the benefits & apply for respite care etc. with the nrp doing eow, days out etc. & whoever the nrp is, either mum or dad, needs to be present & consistent in their dealings with this poor kid.
I understand you must be completely exhausted but it's the parents here who need to parent.

swimmom · 23/04/2018 22:58

Ok. I'm a mother of two children on the spectrum. The split with their father is 50/50 on paper, but I have them more than half of the time. The biological parents of special needs children didn't ask for their children to have these obstacles. I didn't wish and pray for the difficulties, but they are there and I get through them.
To the step parents in this, I get that this is so much more than you ever even imagined...but do you think it's any different for the biological parent/s?!? I get along, manage, have my patience tested, and struggle through because THERE IS NO OTHER CHOICE. You love your kid, you love your spouse, and you get through it.
Those of you who are the step parents, you made a vow. Point blank...no going back from that...a covenant....a promise. Through good times and bad. Marriage is no joke. It's not until I can't cope with the bad, it's through good times and bad...better or worse. When you took those vows, you weren't marrying just the spouse...you were marrying the kid/s too. It is a package deal. And there are counselors or therapists, more now, that can help you figure out how to get through those bad times. And YES, bad times may mean a bad couple of months or year OR even YEARS...as it comes to the care involved with special needs children. You all signed up for this when you got married. Did you not research the divorce rate of biological parents of special needs children....let alone second marriages and thereafter...?????!!??????
Sorry, not sorry.
It hurts just as much for the biological parent, if not more. The biological parents life has been turned upside down by a person they love, giving up on them and not having the courage to go through the fire with and as a family. I'm not saying to just "suck it up buttercup" and not find ways to decompress. What I am saying, is don't think you're the only one hurting here. And imagine how it feels for the child...
#yournotthemostimportant
#enduranceshouldbeyourmiddlename
#suckitupbuttercup
#battletested

If you don't know where to turn, you need to plug in at your church. And if you don't know Jesus, don't talk to God...start talking and start knowing! This is impossible without the strength that God gives you. It is impossible to love a child who will be physically aggressive with you one moment, and the next they're plugging right along--but knowing the love of Jesus helps you love them the way they need to be loved.

swingofthings · 24/04/2018 06:30

Like many of these threads, you are turning your frustration and anger towards the ex when the problem is your OH. The way you feel is totally understandable, so don't beat yourself up, but what is wrong is the length at which your OH seems to rely on you. What would happen if he had never met you or anyone else. He would have to cope with is son on his own. As it is, not only has he shifted his share but it sounds that he has done more.

It's understandable that this is difficult if this is how it's been for some time, but as you say, it is now too much for you. You are working FT, so of course you need more of a break.

You need to have a serious discussion with him.You won't tell him what he wants to hear, but it is HIS son, he needs to step up however much he would prefer to continue t o believe that all is fine as things are. They are not, you're not happy, you're exhausted, you need to step away from a responsibility that shouldn't be yours.

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