I fear for DS future and I am afraid that I am not a person

[Livingtothefull]

Today I took my DS out for the day, I wanted him to have fun. He is 14 and in a wheelchair, has cerebral palsy and severe learning difficulties.

I walked across town to do an errand then took him to the restaurant of his choice. He asked for a 'train map' so I took him to the railway station to pick one up. Then I took him for lunch at a restaurant of his choice (DH wasn't feeling well & didn't come with us).

At the end of the meal DS managed to lose his train map. I don't know how, the waitress may have taken it away with the food leftovers or DS may have dropped it somewhere.

DS had a meltdown because he didn't have his map….swore at me a lot. Apparently and unbeknownst to me I am a 'stupid f--ing bitch'. This is after I have bent over backwards to give him a nice day.

I had to go to the bank afterwards which was open, to pay credit card bill. DS picked up piles of leaflets and threw them on the floor, also knocked over the displays and swore at the staff. There was an elderly woman customer there who was shocked, stared tightlipped at me.

I left bank and told DS I was disgusted at his behaviour and while he behaved in that way he would get nothing. DS lashed out at passers by calling them 'f--ing idiots' including small children. I had to dodge passers by whilst walking him home as I was scared of what he might say.

I managed to get him home and told DH what he had done. I told DH I didn't want to be with DS after the way he had behaved, and left DH to talk to him….DH told me to leave as he knew I had had enough. I came back shortly after and DH made DS apologise to me.

Later DH said that I should have talked to DS and tried to understand how he was feeling. I told DH that I understood the point he was trying to make, but I felt that DS should know how much he had upset me.

I now feel extremely guilty for reacting the way I did. DH is a teenager, he is growing up and it is not unusual for teenagers to lash out I believe? And he is stuck there in that wheelchair, is it any wonder he gets angry and lashes out the way he does?

Anyway I don't know why I am posting here. I am having a rant because I am sick of things being so hard. DS behaviour is bad, but it is so so understandable…but I need to find a way to get him to control it. I just can't have him swearing at passers by the way he does when he has a meltdown.

I also feel that I am not really a person. When I try to broach the subject of how hard it is to deal with DS and how potentially socially isolating it is, I can see people's eyes glaze over; they really don't want anything to do with any of this. I feel isolated from my own family because of this, nobody knows what to say to me. I don't blame anyone if eyebrows are raised at this, I am used to not fitting in anywhere.

And yes...facing up to whether you can continue to care for your DS is hideous. My DS is 11 yrs old and we are going through this now.

Residential schools have been mentioned before by professionals and I have always dug my heels in and said absolutely NOT. He is my boy, I will raise him.

But the levels of violence I have to take are worrying at times, and we have other DC to consider. It breaks my heart...but it I can see a point in the future that he may have to go to a residential school for the greater good of our family, and to get a level of care that I don't know if we can give him.

I am in denial about it all really...it keeps me awake at night and I feel terrible guilt over it. It helps a bit to talk to other parents who have been in similar situations, but no getting away from the fact that it is brutally hard....

OP I totally understand how you feel. I have two dc with ASD and feel that my family has disengaged from ds because they find it too hard. It is bloody hard to be positive and try to maintain some semblance of a normal life when your life is full of challenge and isolation. The things that help me are getting out without the kids sometimes, treating myself to nice things from time to time, reading - massive escapism!, contact with families in similar circumstances. Most people think this kind of behaviour and problems can be fixed by school or ss or support groups. The reality is that most of the help is in the form of cups of tea, sympathy and leaflets about this that or the other. Practical help like someone to take your ds out to different activities is v hard to get and is v expensive. You did v well in the circumstances you describe. I have in the past had to pull over in the car to cry whilst my ds shouts and tries to grab me because of some unpredictable problem or disappointment. I am also starting to get more assertive about saying what I think. E.g someone giving me dirty looks in pool because ds is splashing them and wailing. I look them straight in the eye and say loudly my son is disabled. There is nothing I can do to make him more normal. This is usually quite embarrassing and they normally scuttle off.

Sounds tough really does could you get support from his school your son is a teen lad hrowing up but frustrated his school has probably seen this loads of times a teenager is a teenager all going through their own stuff

I know that a lot of DS behaviour may be down to him being a teenager. He is coping with growing up, all the hormones going through him & all the time he is stuck in his wheelchair. So I do understand this but for his own sake he needs to know this is not acceptable. If we don't get a grip on his behaviour he won't be able to socialise us and this will isolate us further.

I am sorry you have had it tough too Pegalee. And yes it is hard for anyone to understand however well meaning they are. I know that I am a person too though it is hard to remember that when so much of the time I have to put my personal feelings to one side and just be a thing that deals with what has to be dealt with/cares for DS/takes DS abuse on the chin.

We do have some respite provided to enable some 'me' time though this is expected to be cut back.

I agree it isnt acceptable and you know what your sons capabilities (maybe not the right word) are so you are quite right in wanting him to stop this behaviour do you think he is doing it because he gets away with it ?

Yes I could talk to the school about it as I think they should know it is happening. Maybe we could have an action plan in place for September.

DS is at an age where we have to start thinking about his adult life. To be honest I am really scared about his future. I don't want him living at home, primarily because I don't think it is in his best interest (he needs ASAP to be used to being cared for by others) but also because as we get older I think the strain will be too much. I want to lose some of the 'personal care' burden so I can just enjoy being with him. Does that seem reasonable?

Please try not to feel guilty Pegalee, you will make the decisions which you consider in the best interests of your DS and family and that is all. These circumstances are hard enough without the added burden of guilt.

I am trying to lose the emotional burdens which I don't need to carry. Life is an arduous journey and, emotionally speaking, I feel I need to travel light.

I think detaching some of his personal care at some point seems perfectly reasonable giving him some independance (sp) and choice is a good thing for him and you and dad

I want to have at least some of the burden of personal care taken away so I can focus on him as a person. It is really hard to do that at the moment as his personal care is so challenging. Without going into detail, he is getting to the age where a male carer is more appropriate.

Sometimes when he was smaller people offered to care for him, but they wouldn't offer if they knew what was involved. But sometimes we got extra respite for an hour or two As he has got older nobody offers any more, of course I wouldn't expect them to as he needs such specialist care now.

I know what it is like cansu to worry about people's reactions to DS....got disapproving looks from customer in the bank yesterday (though staff were lovely) I am hopeful that most people do understand but there are always some who don't/won't.

At DS' age social services and the Education Department should be beginning to plan for his adult life. Have you had a carer's assessment recently? And have you been told he will be transferred to an Education Health and Care Plan from a statement?

He is a young man i totally get why you want to seperate from the care

Yes there is an ongoing process planning DS future & I am having to accept that maybe I am not the best person to care for him any more. That is actually really hard, it is difficult not to feel bad about it although I am still hopeful that on the whole I am a good parent.

I know rationally that I have no reason to feel bad...I need to jettison this feeling because even if it was justified (although I don't believe it is) it should go as it serves no purpose except to make a tough situation even harder.

I wonder if your DS is pushing the parent/child boundaries just like any other teenager but because of his disability and special needs his options to express are limited and perhaps magnified.

You and DH need to start looking to DS's future and an appropriate care package, if that means support from a male carer then so be it.

You need to look after yourself as well as him.

Living - can I ask what you mean by a train map, please. Is it a timetable or a map of the route?

I ask because dh and the dses travel by train a lot (and dh goes abroad sometimes) - and I am sure they would pick,up some different ones for you. I could post them to you, and you could either give them to him, or hold them in reserve as treats.

Dh also has magazines like Modern Rail - would your ds enjoy looking through one of these, if I found an old one and slipped it in?

Your DNS behaviour is unacceptably hurtful and selfish and their parents should not allow it.

Op, my heart goes out to you. You sound a wonderful mum, who only wants the best for her son and, if that means thinking about residential care for the future, please don't feel bad about it. His cousins behaviour sounds atrocious and I'm feeling annoyed that the parents are allowing it. Living with a disability/looking after someone with a disability could happen to anyone of us. Stay strong. x

That's so kind of you SDTG, I will pm you shortly. DS loves anything to do with transport, and picks up train maps where he can which are usually route maps. He was ecstatic because somebody brought him a Paris Metro map when they visited recently. He is due to fly to Spain in August, and is so excited already about the trip bless him!

His behaviour might not be a conscious choice, and he might genuinely be unable to control his anger around you (but for a good reason!).

I have Asperger's and have meltdowns. However, my meltdowns are much more explosive when I'm at home, with my DH, or elsewhere 'safe'. In a public space or in front of others I tend to become crippled with anxiety and shutdown instead- by which I mean I cannot move or talk or process much of what is happening around me as my mind is focused on my physical symptoms- racing heart, dry mouth, shaking, etc. To an observer nothing much happens, only my DH can spot the subtle outward signs. I wonder if something similar is happening with your Ds and he lets it out with you because he feels safe.

I also wonder if he might respond better to ASD type techniques when he has an outburst- recognising that anxiety and sensory overload is usually the root cause. As he is in a wheelchair he doesn't have the option to run away or hide under a blanket to remove himself from the cause of the overload, or find something to hit to release the adrenaline, but maybe that is what he needs?

If he can't physically remove himself from the situation, could you find an alternative such as listening to music to block out some of his surroundings? Could you take him somewhere quiet and ignore the swearing etc till he is calm? Is there any sort of physical activity he could do to release some stress (like a stress ball or something)?

Thanks for that Crohnically and thank you for sharing your own experience. I accept that I may have been doing DS an injustice in expecting him to control his rages just because they don't happen with anybody but us. Actually DH suggested something similar; to take DS to a quiet side street, wait for him to calm down & then talk to him. I accept that I could have handled it better.

When I took him home and told DH what had happened, DH sat him down & talked to him and then by the time I came back he was much calmer.

I know that as DS is in a wheelchair he can't run away and is dependent on others the way regular teens aren't; I know it must be so hard for him. I think yesterday I may have just wound him up more, that makes me so sad.

Don't be sad- you are a person in your own right, not a robot or extension of your DS, and you have your own emotions and needs to deal with too! Don't feel guilty on the one occasion you might not get it exactly right, either accept that you needed to do it this way for you, or make a plan for what to do next time.

It was just hard for me to read that you thought your son's behaviour is a conscious choice because he only does it with you and DH, because that might be how people see me. Obviously I don't know your son and he might be trying it on- but I needed to offer that alternative view!