Disabled children

[Worstpersonever89]

Sorry if I have posted it the wrong place. I am new to this.

I really need to get some help and I'm too embarrassed to discuss irl with anyone.

I have a partner I have been with 4.5 years. We each had a child from a previous relationship. Both children have autism. My son is high functioning his son is low functioning non verbal and has global development delays.

I feel so sad to say this but I feel like I cannot cope with having a Sen child and being with someone with a Sen child.

I am grieving for my sons future because his struggles as he gets older are becoming more and more apparent and I find being around his son really triggering.

I don't know if it's because I think I need to be greatful that my son is not having needs as high as him and it makes me feel guilty for feeling sad about my child but i get this overwhelming guilty feeling whenever I am around his son. I get so anxious I start shaking and feel like I'm panicking.

The children are innocent and have not asked to have disabilities and I feel like a monster that my body reacts that way just being around his son.

I don't know what's wrong with me but I feel like I'm an awful person for having this reaction.

In our relationship his son has had so many accidents due to his lack of understanding and it makes me feel absolutely horrified when stuff happens like I'm responsible for these things and I can't protect him because I don't even know what I am doing with my own child let alone him. I freeze in these moments and sometimes need to throw up. He's so vulnerable and I the adult am useless to help.

I am expected as his dad's girlfriend I think to have more of a caring role but I feel like I can't do It when I am like this.

Yesterday he threw up over himself loads and my partner's mum was asking me to help clear it up but I froze. What is wrong with me!?!? Naturally she got pissed off with me for not helping.

I have a type of OCD where I can't handle mess and germs. I am constantly struggling with my own son's germs as horrible as that sounds and his son runs around licking things and spitting on stuff and I find it so hard to be around but I know he can't help it.

I know it's a me problem and I need help but I'm so devastated I am such a horrible person I can't even bring this up to a professional because they will think I'm a discriminating awful person and will likely think how can I be the mother of a Sen child and look after them when I feel like this over
another Sen child.

I can't imagine how difficult this must be, OP, but when you mentioned the child being sick it took me back to when my own were small. I had to put goggles on and ear plugs as the sound of vomiting would make me do it too. My husband isn't fazed by bodily fluids, thank goodness but these were MY children and I could barely tolerate it.

I'm so sorry that you're in this situation, it sounds so, so hard and whatever decision you make is going to cause you pain. At the end of it, you'll just need to make the one that is best for you and your son. Your partner will have to accept and do what is right for him and his son.

This child has needs that you simply can't meet, especially since you have to put your own child first.
Its nobody's fault and you shouldn't feel bad about it. You should break up before everyone gets too involved

His son is not badly behaved at all he just has sensory needs where he licks and spits and I think that it's my issue not his. I should be accepting and understanding not throwing up and shaking as a response.

I think you should be more accepting and understanding of yourself. His sensory needs are not his fault and your OCD is not your fault. They're incompatible and that's the issue. You don't need to lay blame or failing at your door any more than you would at his. It's not about his naughtiness or you being a bad person, and it's just not something you can suck up in this situation like you have infinite coping capacity.

Hi OP, just because your son has a disability, it doesn't mean that you have/should have an innate ability to deal with any disability. You effectively lessen the load for your partner but increase it for yourself. It's okay to acknowledge that it might be too much for you but you do need to be honest with him about it.

The more school tell me about his struggles and how they expect special school is the way forward makes me feel suffocated and my heart so heavy. I love him more than anything and it doesn't change who he is for me but the thought of life being so much harder for him and not having a typical experience is scary.

The future is going to look different than you thought it would…but it can still be great and fulfilling. To try to put your mind at rest re Special School, my amazing DIL is a teacher in a SS for children and young people with autism. She has taught Y7 in the past and often has several children who have joined from a mainstream primary. In every single case the children enjoy school much more once they’re with her. Often the children have had poor attendance records because mainstream school was so stressful for them and always they have come from settings that were having to work around them and support them as best they could but found it hard to meet their needs. With DIL the whole curriculum and day is focussed around their needs and they absolutely thrive. What they achieve is amazing to me (mainstream primary teacher)! She has had her class acting out whole sections of Shakespeare’s The Tempest and children asking their parents if they can see the play during the holidays because they loved it so much. This year she’s teaching older children and some go on to take GCSEs (she has a child who wants to be a vet who is amazing at science) and others who take life skills lessons so that they can be as independent as possible as adults. It will be ok.

You’re being so hard on yourself whilst dealing with so much. I’d give you a hug if I could and tell you to take a deep breath and cut yourself some slack. You are a single mum to a child with SEN…you already deserve a medal as far as I’m concerned. Your partner sounds lovely - he may well understand if you explain how you’re feeling.
Good luck with it all.

That’s totally understandable. But disability isn’t a competition and someone having higher needs than your son doesn’t mean you can’t grieve for your son not having the typical experience you’d wanted for him (and you). In fact, I shouldn’t have put you in brackets because your experience of motherhood is different than you’d expected and it’s ok to feel sad about that too.

Your son will still have a lot of happiness and joy and achievements. I wonder if therapy to help you come to terms with his disabilities would help?

Either way, I think a weekend off from visiting your DP might give you a bit of headspace.

I'm sorry you are upset.

Yes, it is not a easy transition (for parents). I remember going to the first meeting ever at a special school (year 5) before my son started and I was still thinking, "Well, maybe he won't come here, maybe there will magically be another mainstream primary that will be suitable".

Then I saw all the folders and his drawer already had his name printed out and laminated and stuck on. (He is the only person with that name in any school so I knew it was for him!) I'm getting a tear in my eye thinking about it, realising this was going to be the way forward.

Like all of life, it is made up of little snapshots now. One teacher at that school (very few children) who did an hour of cooking with him every day because that is what he enjoyed. An ongoing game of chess with another TA that they kept on the windowsill overnight, ready for the next morning. A massive journey in (an hour each way) but he had his headphones and all the taxi drivers were nice to him and he gave them Christmas cards.

11-16 was less fun as he got older but still a lot of kindness. He dived through a square of foam in the sensory room (with a hole through the centre) and got stuck and had to waddle to the staff room to be released "like a penguin" as he described it!

Because my son rarely speaks, occasionally staff would forget that he was listening and he would come home and tell me all the gossip. He also has infinite patience with anyone with disabilities or difficulties because he saw that every day.

Then taught 1-1 at college and getting 3 decent GCSEs and a couple of BTECs!

As a step parent you have to be willing to be another kind of parent to your partners child, especially if they’re young, and that’s challenging enough, never-mind a severely disabled child, and looking after a disabled child in itself is a lifetime commitment, 24/7 hard work. You’ve already got your son to think of and it’s okay to feel like you feel. I would say it’s okay to bow out and think of yourself and your son.

These words from another poster are wise:

I'm feeling overwhelmed with our situation and I can't continue our relationship. My DS needs quiet weekends to recharge and I need to put him first. I'm feeling close to burnout and I can't give this relationship the energy it deserves.

But also take some time and have a conversation with yourself, as if you would with your best friend, who doesn't judge, doesn't fix....

I am overwhelmed by my situation, I have not got space to come to terms with what the future looks like for me and my son. I need to spend time with my son and I need to find space for myself. I feel anxious, I cry, I feel overwhelmed by many things and the behaviours of my partners son, add to that. My partner is lovely, but he does not see my needs, because they are not the same as his. He comes to my house, but I need that to be a place of sanctuary for me and my son. I love him and I do not want to lose him, but I can not continue in this state of high anxiety, overwhelm and high alert where I am sent into a higher state of overwhelm by the presence and behaviours of his son. My son also struggles more, when we are all together. I think my partner needs us all to be together, for us to be a unit. I think I need my son and I to be a unit, to work out how we navigate this life together, to step through each change and deal with it. I would like to be able to have a relationship with my partner, outside of our parenting responsibilities. Could I imagine a way in which that would happen? I have already asked that we have some time together without his son and he did not understand my needs. Maybe I could broach that again?

If you do break up - the narrative is - yes, it is very sad. We had so much love for each other but our boys need so much of us, there is not enough space for us to nurture our relationship. Having two children with very intense needs is challenging. We thought that we could bring our families together, but that has not been possible.

I think your partner does not see your needs and he has expectations of you that you can not meet. This does not make either of you, bad people, but you are in a very challenging situation. It may be that you can find a way.... but you need to find a way to bring some space and time into your life for you. Your body and your mind are telling you this.

I think that many people can benefit from support - someone just to listen to you.. not necessarily someone that will offer solutions, strategies, medication... just space to speak, to be heard and to process your emotions. I think this would help you. I imagine that it is not easy to find.

I agree I think voicing my inner thoughts on here has really lifted some weight. The next step is being able to talk to my partner I just feel he will be offended and take it as that I'm being horrible to his son. I think I lack confidence because my mental health has taken such a hit. I always worry what his mum thinks of me in situations like yesterday with the sick. I wish I had the natural ability to be who they need me to be but I think everyone on here is right. I was expecting to be ridiculed for being discriminating but I'm taken back by how kind and understanding people are.. I hope my partner is and I am going to try and salvage the relationship and find a solution before walking away.

OP if this bloke was so great he wouldn't have a problem with you wanting to spend some weekends with just your son - that is a perfectly reasonable thing to want to do. Being so worried about being able to talk to him without him being offended is also a red flag IMO - it is perfectly reasonable for you not to be able to cope with his child with complex needs even without already having your own SN child to consider.

I'm concerned that you've got him on a bit of a pedestal and he's not actually as great as you think. If he was he'd understand how difficult it is for you to cope with all this and how important it is for you to have time with your own son getting to grips with his needs.

I also wonder if you might be autistic OP? Anxiety, depression, low self esteem and OCD are all highly comorbid with ASD. It may also explain you completely freezing when under stress. I may be wrong but worth considering IMO.

You also sound like you have quite poor boundaries and are a people pleaser who is very worried about what others think - that may be due to your low self esteem and may well stem from your childhood. Did you have quite a difficult childhood OP?

Personally I don't think this relationship is for you, and I don't think it is the best thing for your son either - I know my son with ASD would really, really struggle in the position of your son. Personally I would tell your OH that you need time just you and your son for you to learn about his condition and his needs so you've decided you're not in a position to be in a relationship right now and have decided to end things. If he doesn't like it, or is offended or anything else then that is not your problem.

You are allowed to leave a relationship for any reason you like, absolutely any reason at all. I also really think you need to work on your self esteem, boundaries and people pleasing before you consider starting another relationship. Concentrate on you and your son for now, you need it and you deserve it.

I think it's just more that he is so chilled out about the kids and doesn't have the same issues as me so he doesn't see there a problem being all together. He thinks it's nice for us to blend for both the sake of the kids but I think when his son is like loud and then licks my sons toys or grabs his food off his plate my son has a meltdown. My partner deals with this so calmly and is reassuring and understanding and I think he thinks that it's working for us for that reason. My reactions are like to feel anxious shaken and on edge. He doesn't think it's because of the kids but more because I'm just having anxiety. I haven't told him the kids make me anxious as I feel bad to say that to him.

He really is a great man. He is so selfless with both kids and it's why I love him he has qualities I wish I had.

I am just scared that I will make him feel his son isn't good enough for me and really it's the other way round. I am a people pleaser but also just would hate to be the reason someone feels bad about themselves or their child. I just have never found the words to put it delicately and so iv kept it to myself.

I have considered I may have autism but it was never flagged and I didn't struggle with these issues until adulthood.

My parents were very OCD. We weren't allowed to touch the walls and they would leave covers over furniture. We were always told about germs and mess being wrong etc so it's deeply ingrained in me. I wouldn't have considered my childhood bad I thought these things were normal until I became and adult and realised people aren't as over the top about germs as me.

You weren't allowed to touch the walls of your house OP? That's really far from normal as i'm sure you realise now. Were you allowed to have friends round to play? Were you allowed to play outside? I suspect OP that your life may have been so far from normal that you don't even know what normal looks like even now. I suspect your parents were hugely controlling and that is why you have grown up to be a people pleaser with low self esteem.

I think you're pretty vulnerable tbh OP, as I said a great man would be happy for you to spend time just with your son and realise how challenging his own son makes life. Just make sure you put yourself and your sons needs first. Anything else is doing you both a disservice. If he doesn't like it then too bad.

Yeah incase we left marks on it. We were allowed to have friends over and play it was just very organised when we did so that there was minimum mess etc. that's sort of how I am now with my own son. I let him get messy things out but like in a contained space and I supervise and wipe him down constantly. I do think it's not normal how I am and I do find both our children quite triggering because of their habits and sensory needs. I have never said this to my partner he knows I'm organised and tidy but as we don't live together he doesn't know my rituals and ins and outs of how bad it is.

I will find some time to talk to him but probably after Christmas as I don't want to spoil the time we have together. I am dreading it but thinking of the kids.

Op - you need to start prioritising your ds. He has autism and so needs - not wants needs - to have a life where nobody is licking him. You are denying him that. And so he is going into autistic meltdown. Poor lad. So stop thinking about what you want and what makes you feel the least guilty please start prioritising your son.