Guilt over finding everything with DS such hard work

[JESSnutsRoastinOnAnOpenFire]

For years I have always made sure that DS participates in everything possible.. and that we will all do stuff as a family with DS along with us! But he is such hard work now (he is 5/has some kind of cp/developmental delay etc etc). I never relax (especially since he had 2 fits in the summer) but the closest I come is when he is at school/asleep at night. (And less so at night really because I am constantly watching him on the TV monitor to make sure he is ok/not fitting or breathing too fast as he has had a constant cough and/or chest infection for weeks now.)

This is wrong isn't it. I ought to be able to 'enjoy' him more. He is lovely and I love him to bits.. when I am playing with him on the floor I can't stop grabbing him and smothering him in kisses (he would never allow this if he was NT I'm sure!) But being out with him is a nightmare... and being in with him is often worse (made worse by a house that is so unsuitable for his needs.) I planned to take DD to a Christmas church service for kids this morning. I hadn't planned to take DS as although they love him church, these days he is so hard to control that I just feel like a freak show and I hate all the sympathetic glances and comments.. and have to mask it all in a smile.. so they then think I'm 'brave' and 'cheerful' and tell me so! It's easier to go without him... and these days I find I have to chose the easy option sometimes. But DH was desperate to watch Liverpool playing and all DS kept doing was throwing the remote control and other missiles at his head. (He is a surprisingly good shot considering his coordination is poor.) So I took him to church.. and he was horribly high maintenance. I spent the whole time wishing he was at home so I could have enjoyed the service with DD (who got ignored in my mission to prevent DS from wrecking the joint.)

He is getting worse. He seems to be getting more and more out of control which I think is frustration. But nobody can cope with him.. although some do try!

I live in fear of him falling ill or losing him.. but fear for a future when he becomes harder and harder to handle as this is what seems to be happening. I no longer 'grieve' for the child he might have been so wish I could enjoy him.. but although he makes my heart burst with love for him, coping with him is getting harder and harder.

Just venting really.

for you Jess.

My daughter has cp/development delay and is very hard work - more so than my DS who is AS.

I have always found that venting is a good release and that i always feel better for it!

Do you get breaks and time for yourself? I never have done and it has led to me almost having a breakdown, i make sure that i do now even if its only 10mins for myself-but then you probably know all this and i hope i dont sound patronising.

Sending you Hugs

Love Jen

DO you have any respite care? What sort of school does your ds go to? Could you meet with other parents in similar positions for chatts etc?

We have never had any respite yet. Repeatedly turned down and then finally granted 1 day a month this summer. We met the respite carer a few weeks ago. She was supposed to call us to arrange to meet DS for the first time before she went away for Christmas but she didn't. Perhaps I put her off with my description of his needs.. but thought it best to tell it like it is! I told her all his lovely little ways as well!

What does a breakdown feel like Jen? How do you recongnise when you are having one? I'm sorry for asking such a silly question but I have often wondered. I do feel as if I can't cope with one more thing.. not that this stops them for happening. The breakdowns I know about involve people taking a long time to get over them/being housebound etc... that could never happen to me.. I don't have time for one! Too many people rely on me.

Hercules, DS is in mainstream with lots of one to one care. Am being to have doubts for the first time about whether this is right for the future. I do benefit a lot from odd chats with people in similar positions but there is never time to meet up etc. (EG the lovely Fio from on here who is 'without pc' at present thought I had the hump with her because I hadn't phoned when I said I would. Mostly we send each other supportive texts. I just don't seem to have enough ... I don't know.. 'ooomph' these days to make arrangements to see people or even to phone them!)

i teach in a school for severely disabled children which is why i asked.

It was this summer, i was crying all the time, not wanting to go out anywhere, extremely depressed and just the slightest thing would have me in tears- DH says it WAS a nervous breakdown that i had.
I have only just started to feel like i am getting back to some sort of normality these last couple of weeks.

I had to go on AD,s and am still on them now, i do feel better for them but still have bad days even now-but who doesnt with Special Needs children?

Maybe he should be in special school. The reason I we put him in mainstream is because of his fab social skills.. they are not 'normal' by any means.. but he loves everyone and communicates in loads of ways even though his speech is not the best. But I keep hearing (it's as if I have antennae out at the moment!) about how much easier it is to get the right therapies etc. in SN school. DS goes to a mainstream school that is a 'beacon' for SN.. but they don't even have a SaLT there anymore and he used to benefit a lot from her.

I do relief TA work at another school and notice how the SN children are so much hard work (even tho this school is less geared up for SN than the one DS is in) and often have to be taken off to do something else. And DS's needs are far 'more' than these children. It's so hard even for us, to know what he is capable of educationally. He often surprises everyone. His sense of humour is very developed for sure. And he read 'cat' off the board the other day - his teacher was gobsmacked! And he has real ability for 'patterns' work in maths.. but I'd be fibbing if I said he could do much else that the others can do. Would we be holding him back if we put him in SN school? I am not even sure if it says the 'right thing' on his statement for such a placement. Maybe he would be happier all round (less hard work as well?) if he was in SN school. I just don't know.

What did the ADs do Jen?? It sounds familiar. But I don't want to even admit to depression for some reason. (LOL I am busily posting on another thread about this under another name for some reason! Silly cow that I am!! And Hercules is replying to both threads bless her.)

I could cry and cry.. I keep feeling as if I could. But I don't unless alone and then I stop myself.

Sometimes I just feel that I want to hibernate. As Amelia has become more mobile, she is just constantly on the go. Touching everything...going out can be an absolute nightmare, even a trip down to the local shops seems too daunting and not worth the effort sometimes.

I do tend to "switch off" to it all every now and then, then I feel guilty and start up all her therapies at home again. I think it is the only way I know how to survive, if I lived my life, constantly giving Amelia the attention she needs (for eg, her SALT, OT, physio, sensory work...etc)I would just burn myself out.

Sorry, my waffle isn't of much use is it!

Yes it is Dingle.. it reminds us all that we aren't alone.

My school is for disabled children and caters for all abilities. There is a a fairly wide range of abilities and lots of social interaction. I'm biased though. IF i were you I'd visit such a school just to see what it was like.

It has all the various therapies on site as well.

Jess, Jimjams (now Baka and AutieChristmas) moved her autistic son from mainstream to SN schooling and says the difference is unbelievable - he's happier, the staff love him (instead of barely tolerate him), he is improving all the time, obviously still hard work, but life is easier and most importantly he is happy.

There are loads of support staff and class sizes of around 6-10 in my school as well.

There are loads of support staff and class sizes of around 6-10 in my school as well.

We did before he started YR Herc. (He is Y1 now.) The SN schools seemed so quiet.. (we visted the two in our area.) DS seems to appreciate noise, hussle and bustle etc.. and I thought the interaction of lots of NT children would help in on socially (and was obviously worried that lots of SN children might hold him back socially.) I don't know if my fears are unfounded or not. It's just that his social skills really are his one strength. Although he has been showing some hard-to-handle behaviour both at school and at home in the last few months which seems on the surface (in my mind anyway) to make mainstream less suitable for him. .although no-one has said this. I am afraid to start a ball rolling that might be the wrong choice for him and DH seems to think he is fine where he is.

LOL Aloha, why is JimJams both of those people? (Like I can talk, lol!) Yes I have been told a similar story by a friend I used to live near up North.. but both hers and JimJams children are on the AS whereas DS, who has many difficulties in many areas, is not remotely autistic. This is the stumbling block in my mind when I try to consider moving him.

In my school there is a mixture of socialness iykwim. It might have been quiet activities you saw the time you went. Why not visit again and take your ds along?

Jess have no practical suggestions just wanted to say I feel for you and god knows you shouldn't feel guilty
it is very hard on you (and on your dd). I do know what you mean about being a freak show
hope the respite care gets sorted for the New Year - is there any voluntary organisation that might be able to fill int he gaps?
love, HCx

I think I would find out if you could no some kind of flexi schooling.
One of my friends is looking into this for their child,{who is not asd) part time in local special school{for therapies} and access to mainstream for social skills.

I am sorry it is so hard at the moment, I often feel like I don't enjoy my children enough. DS3 and to a lesser degree ds4 can seem like one big to do list.

Thinking of you.

Thank you Maddie. Yes - a while ago it was mentioned about input from the local special school but nothing came of it. I have just spoken to DH about seeing the SENCO in the new year (at his current school) and possibly making some new plans that involve both schools. I know this can be done as it has happened with other children. And Fio's DD already goes to that school. I think I will give Fio a ring as well. Thank you for your input all. xx

Yes, there are lots of links with mainstream schools with some children going a couple of days to mainstream and lots of activities where schools mix.

Thanks Herc, I had previously thought it might be a bit unsettling for him but we don't know until we've tried and tbh he likes ALL people.. so new/more people shouldn't be a problem.

On another note, re my thread of other week re SN children in mainstream and getting invited to parties (not in DS's case).. he came home with a pastel coloured envelope in his bag on Fri and I thought it was a party invite.. my heart was in my mouth as I opened it! But it was a picture drawn for him by another child. Ah well

I'm sorry, I haven't read all of this but skimmed. I don't know the difference, if there is one, between a nervous breakdown and/or depression but it certainly sounds like you've had depression.
As for thinking about special school. I'm not saying you should do it but, as long as he isn't in a school or class that is dominated by children with ASD he should get some social interaction and communication with peers. I know quite a few disabled children who are not autistic who attend special school and who have a LOT of social interaction BUT, obviously, some of the kids ASD or not, can't communicate well. One particular child I'm thinking of flex schools between special school and an m/s school that has a higher intake of children with SN, maybe like the one your DS attends now.
The other thing that stands out to me is, as our children get older we really have to start looking for clubs, playschemes, SN activities for them to attend. I know that a lot of people don't want their child to attend "special" sessions but these are an absolute godsend imo. I made it my "project" a few years ago (DS is now 10 so when he was about 6-7) to find good activities and schemes. I attend quite a number of the activities with him (swimming, trampolining etc) which is good for ME and for our relationship as it is purely fun time. But I also found a local Saturday Club that he started when he was 8. I thought I'd die rather than leave him somewhere without me or someone who knows him inside out, but they got to know him and I don't have a moment's hestiation about leaving him there now and it gives me and DH time to spend together with DD (rather than always splitting up). This is just the beginning of him going into his teens and I am working up to that by accessing playschemes that also offer residential holidays etc with a view to trying that in a year or two. I strongly recommend you look for similar things in your area, hopefully there are some, take it slowly but you will be surprised how very good some of these things are. I don't feel guilty about it at all, although I would have when he was a lot younger. He needs to do things without us and we need him to, especially as he gets older. Good luck.

JESS I felt like you when ds1 was in mainstream. (He spent 4 terms there). He was getting more and more out of control and it got to the stage where I literally couldn't take him anywhere there might be people, or any expectations. We went to Dartmoor- a lot. I also felt he wasn't being taught what he needed, and was trying to do that myself- and was constantly having to provide school with materials. He wasn't included at all at school (no xmas play, no tree planting with th rest of the class, no assemblies, nothing).

Then we swapped to special- and wow what a difference. They had a whizzy, wild first month with him and then he just began to flourish. We still can't take him anywhere with people if we have his siblings, but he has started to go to the newsagents with me sometimes. He's much more involved with the family as well- helps me make his bread for example- he's more interested. I put that down to tyhe fact he is kept so busy at school. And the curriculum is perfect for him, centered around life skills. If he was in ms he would be doing tudor history next year!- He has no concept of last week, much better that he's going to Sainsbury's cafe and swimming instead.

He's very happy, everyone comments that I am much more relaxed. Recently I commented to dh that I have started to enjoy him again, so I know what you mean. For our family special school has worked wonders for all of us.

ds1's school btw is similar to Fio's dds. We have a big mix of children, from profound and multiply disabled, through learning disabled through autism. Some of the more socially and academically able children attend a unit across the road on a mainstream site. They sometims attend mainstream assemblies and the ms kids sometimes come across to our shcool (1 class came for the xmas carols for example). DS1's class has 2 autistic children and 3 with learning difficulties and autistic tendencies. Some are verbal, some like ds1 not. All the children have their own individual timetable and curriculum so they do different things- and its that individulaity which I think makes the school so fantastic. There is a parallel class (same age range) where the children have cp and physical difficulties, then separate PMLD units. A huge range of disabilities and abilities, but they are able to provide a good tailored education for all. They'll use whichever approach works. So with ds1 they use lots of ABA, but with other children they'll do something different.