Depressed older DD to SN DS? How do you cope?

[MarmadukeScarlet]

Following on from another thread yeasterday, which I desperately didn't want to hijack (although was given some advice) I think my DD and I need some assistance.

It's a long story but, when DD was nearly 5 DS was born and was very poorly. He has some special needs inc CP, metabolic/genetic condition, heart valve problem etc etc.

Yes he does take up an awful lot of my time and attention, but I always try to spend (as does my DH when he is in the country) good quality time with her and as a family.

DD is a very polite, well mannered considerate child of high verbal IQ and ability. She is very accomodating and struggles to stand up for what she wants, perhaps because DS' needs always come first?

For the last few years DD has become very sad, her glass is always half empty.

She has mild dyspraxia and doesn't have a best friend at school, was bullied at school - which I feel dreadful about because it was when DS was very ill in hosp it started and I just wasn't focussed enough on her at the time. The bullying went on for a good few years before it was really stopped.

Sunday night she was in tears due to our cat dying - 2 years ago!

Mon she was in tears as she thought she was going to be asked to leave the junior choir as her music teacher doesn't like her. When asked to explain it came out that DD sometimes gets questions wrong (and T always gets them right) so she feels that the teacher doesn't like her. Apparently the teacher replied "Good try, X" to DD when she was wrong, so no suggestion of nastiness.

Although she has had a major problem with one of her Yr 3 teachers, who spent ages threatening her with a demerit and eventually gave her one at end of year 3 (it was for not working quickly/neatly enough in class and then forgetting to finish off said work at home/being forgetful - ERM, read the Ed Psych report Mrs Mean that is what dyspraxia is about!) This got so out of proportion in DD's mind - We didn't tell her off, although I do sometimes get exasperated with her being in 'trouble' for not doing homework which she hasn't written in her homework diary as she should and has promptly forgotten - to the extent that she was unable to get to sleep on the 2 nights before this teachers lessons. Many meeetings were held with form tutor, head of pastoral care and headmistress and Mrs Mean has now been banned from giving DD any demerits in yr 4 and has been warned not to 'bully' her.

So yesterdays bedtime tears decended into she often has no one to play with, she feels lonely, she isn't one of the clever 'popular' girls, the ex-bully still intimidates her and will often 'take away' the friend she wants to play withshe wishes I was a teacher at her school so she could spend breaktimes with her (I'm not a teacher btw) She wants to go to DS' school because she thinks she is not clever/good enough to be at her school.

She has had a trial day there and really liked it, everyone wanted to play with her as she was a 'novelty' but she knows no-one but DS at the school.

I feel guilty and responsible. Due to DS I don't socialise with many/any of the other parents, most of the strong friendships at DD's school seem to be between the Dc of adults who have dinner/coffee/go skiing together etc. I feel I have let her down.

Due to DS I am often tired and stressed, she has several times said she wants life to be like it was before he was born.

How can I help her go back to the confident happy little girl she used to be?

I am in floods of tears here, racked with guilt, sadness for her and memories of my own unhappy school years.
By BlueSapphire77 on Tue 06-Jan-09 11:34:11

It is copy and pasted from here my thread

Not sure how I managed to get bluesappire in on that c&P, oh well!

I don't have a DC with SN's so I am not going to pretend to offer exactly relevant help here, but one thing struck me from your post which I think you may be reading too much into - your DS was born when your DD was 5 (you don't say how old she is now), and most of your DD's problems for whatever reason seem to stem from school. So when she says she "wants life to be like it was before she was born" she is not comparing like for like, but rather her life now with its struggles, with life when she had hardly started full-time school and when presumably her dyspraxia was far less of a problem.

She started full time school (Reception) 12 days after DS was born, he had just left SCBU then. She had spent 2 years in the nursery of the pre-prep before entering reception.

I spent the next few months in and out of hospital with him.

A new girl joined at the start of term, who bullied my DD horribly -both physical and emotional/mental bullying. I was so wrapped up in DS that I did not see my previously confient girl start retreating into herself.

She is 9 now.

When she said she wanted her life to be like it was before DS was born, this was in the context of how it is difficult for her to have firends to play - as he wants to be with them and I cannot cook tea and keep him entertained/away from her and her friends. Some of her friends do not know how to cope with DS and tease him/ignore him. Also she and I both like art/craft we used to spend hours making things together, it is now very difficult to do this as DS cannot be left to entertain himself and isn't at all interested in making things.

Hello! Some of your post sounded like me talking about my DD! She was five when my severely disabled DS was born, and her life was turned on it's head. She is now 17 and a bit of a hermit though she has got a long-standing group of friends. I felt very isolated when she started school as other parents had so much more time to spend getting to know each other, do mutual babysitting and - yes - go f*g skiing, the b**s! I always felt the gulf between their experiences and mine was too big to bridge, and, if I'm honest, I was very chippy and angry in the early days, and I isolated myself.

What has helped us is respite for my son. That gives us more time together, and makes having friends round - in the days when she had friends round - possible. Can you get Direct Payments or overnight respite? We had to fight tooth and nail to get it, but it has saved our family. My daughter also loved art, and went to an art class which she enjoyed, as my youngest DS does now. Do you know any families with disabled kids who have siblings her age she can hook up with? They can feel safer together.

I do really feel for your daughter. Having a sibling with special needs can set them apart, but I there are also lots of resiliant kids with disabled sibs and perhaps she would be struggling without her DS in her life. My daughter always swears that her difficulties are nothing to do with her brother. I too hated school and was always over-identifying with my daughter's experiences and panicking that she would be singled out for having such an embarrassing brother.

Can you think back to your school days and think what strategies would have really helped you? Counselling or something like a club or hobby to take her away from school and home? I really hope that she gets a better time of it soon!

How about some family psychotherapy--we have found it very helpful. Available for free from DD's Child Development Centre. We all go, including DD, and it's made DS feel he can use words to express his feelings of anger, grief etc. Also it's helped me see that there are some things I can control, and some things I can't. Not an easy, quick answer, though.

Donkey what age was your DS when he started going to repite? My DS is only 4 and very dependant on me - DH cannot even help him settle to sleep, he just becomes hysterical (which he can keep up for hours, determined little beggar!) if I am not there.

I was angry, I still have a red mist every now and again, the odd 'why me?' thrown in for good measure. So, yes, I haven't helped myself in that way. So much of the social life of friends involves much that DS couldn't cope with well (posh eateries, Ascot, local point to point, etc) so we just don't go.

I don't know what direct payments are, we used to get high rate care DLA but I stupidly didn't make time/couldn't face the forms in time for a renewal so haven't had any financial help since last April. I didn't ever apply for mobility or CA, CA as I thought it was taxable and I work for my DH and pay tax on a company car - it took them 3 years to get my tax code right and I had to keep forking out large sums so I didn't want to complicate matters That makes me sound very pathetic, doesn't it but I suppose I am just ground down by the whole thing. The DLA forms had to be returned at the same time as I was fighting for a Statement, I thought the Education stuff should take prority - we are now waiting for Ed tribunal date.

I too think she would have struggled a bit without DS, but I think her life would have been simpler - a happy, smiley, energetic Mummy (just how I used to be) for one.

I don't really know any families with Disabled DC, We finished Portage (and therefore family group) 2 years ago, he went to SN nursery for about 1 year but, tbh, the parents there were never that friendly. I invited (written) a few to come riding here in the summer, but 2 didn't ever reply and one couldn't make it so I gave up.

She is at Brownies tonight, where she is the youngest Seconder. She loves it and it gives her some much needed freedom.

Thank you for your kind and thoughtful comments.

Riven I didn't know your DD1 had run away, I am so sorry. Puts my issues with DD into perspective rather.

Arabica I don't think there is a CDC round here or a Sure Start centre. There is a Christian Charity which does child counselling nearby, one mum at DS' old SN nursery her eldest (who is 2 yrs younger than my DD) went there a few times as she was finding it difficult.

My local Carers First had a day long 'supporting siblings' course recently, but I couldn't get childcare for DS so I couldn't go although I have asked when the next one will be.

Thank you all for your helpful posts.

MarmadukeScarlet, direct payments are paid by social services into a separate bank account and allow you to organize care for your child. It is paid at a rate of about £9 an hour and you are given x hours a week.

It is well worth asking about. You will need to be seen by a social worker and they decide how many hours you will be given. You can use it for all sorts of things even babysitters.

MarmadukeScarlet, my son was 5 when he started getting family-based respite. I had to fight for it. Direct Payments didn't exist then, but if your son can't stand it without you, it might be a better option. You will have to put pressure on social services, it won't be easy and think carefully about what you really need, not just what ss say they have to offer. If your son manages at nursery without you, it is evidence that it can be done and you will need to extract yourself from him for your daughter's sake.

You really take me back to the early days once again! I remember just spending most of my time on my own with my son, absolutely gaspingly lonely, and isolated even from other parents with special needs kids. On the rare occasion I did meet them, none of their kids seemed to be as disabled as mine, and where they were, everyone was doing a monologue about how tough life was and not listening to anyone else. Including me!

I felt very different when my son finally went to school. I had some of my life back at last, and I really hope that you will feel the same. You are nearly there! It didn't cure everything, but I had time for myself to recover. That might give you the strength and space to sort out DLA/CA/Direct Payments and a plan of action for your daughter. You don't have to do it all at once, just prioritise and make a decision to act. New Year, new mood. Sod the point-to-pointers - who wants to be in that world anyway? i have to deal with rich hippy, eco-fascists here, and they are just as bad.

Contact-a-family can advise on all sorts of things if you don't have a local parents group.

It doesn't need to get worse, it really can get better!

Donkey LOL at rich hippy eco fascists! Thank you for your sensitive and insightful posts.

Yes DS does cope in nursery, his one to one (that I fund all bar a tiny bit funded by the Serious and Complex Accessibility Group -SCAG) is my old mother's help that he has known since he was just 1. She didn't ever live-in, but she may well have done! She loves him like her own and she has gone with him to both the NT nurseries he has been to. He still is sometimes upset when I leave him, esp at the change of teachers/pace when he went from Nursery to Transition (pre Reception). Sadly she is going back to Slovakia, where she is a qualified nursery teacher, at Easter. She was due to go Chrismas 06 but cannot bear to part from DS!

I am looking forward to him being at school, but scared because unless we win the educational tribunal he will be attending either a completely inappropriate school or a school with inappropriate support.

You have made me feel much less of a failure and far more positive, I will soon have the time and energy to sort out the admin and get what we deserve/need.

Thank you also to vjg for carefully explaining direct payments.