HEing my daughter with SEN's is burning me out and making me depressed! I don't want to send her back to school. What can I do?

[mummyloveslucy]

Hi, I'm sure most of you know of our situation now, but for those who don't. I have a 6 year old daughter with a developmental delay of about 2 years. She's being acessed for Aspurgers and isn't fully toilet trained. She has several accidents a day, of both kinds. I'm not sure wether it's behavural, as she doesn't like using the toilet.

All her play is make believe, acting out things she's seen of DVD's or TV. She likes repetition and only wants to play with me if I follow her rules and say exactly what she wants me too. She'll often get stressed if I don't say it right/ do what she was expecting. It's just soo mind numbing and irritating! I've got to the point, I can't stand it. I'll tell her to play that game on her own. (Which she does, happily.)

Everything is a battle with her, dressing as she's so sensitive to touch, being cleaned after an accident, getting her to drink enough, getting her to do her brain gym excercises, speech therapy... you name it.

We aren't doing any formal work, appart from her speech therapy and brain gym that has to be done every day. All she wants to do it watch Charlie and lola at the moment. She'll say "I'll only do my excercises if I can watch C&L afterwards". I usually agree, but once she's watching it, it just makes it so much harder to interest her in anything else.

She's so loud as well, she never stops talking, often shouting out her words. It drives me mad! Often it's just her make believe.

I just feel like I miss the time I had on my own while she was at school. I got chance to re-charge my batteries, do the things I liked doing and just having a bit of peece and quiet. I am going to be sending her to a child minder one day a week as from next week. That should help. I even feel guilty about that. When she's not around I do miss her, then within minutes of her being home, I've had enough.

I Just don't know what to do. She had such a horrid time at school, I wouldn't like to send her back, but have concidered flexi schooling. I don't think that would be good for her either though. What I'd like is some sort of nursery/ reception class for her, just 3 days a week so that I can have a break and know that she's happy, with other children and doing fun things. I know this is impossible though. (I think?)

Do you think I'd benefit from seing the doctor, asking for some anti depressants? I just don't know what to do to cheer myself up? I feel like I have the whole world on my sholders. I can't enjoy my daughters company, even though I love her with every inch of my heart. My favourate time with her is snuggeling her to sleep, when she's warm and cosy and quiet. THen the guilt hits me, thinkin of the day I've had with her. The battles, the zoning out, just not connecting with her at all.

What should I do???

[thisisyesterday]

do you hav e any help from anyone else?
is she entitled to any kind of disability benefits that would mean you could be given a break?

it sounds like you have a lot on your shoulders at the moment and tbh i am not sure that anti-depressants will help that much, I think that it's more a case of you needing some time to be you... that's why I ask if you have any other help? do you have a partner/husband? or some family who could have her one evening a week so that you could go out and do something for yourself?

my son as asperger's and I can totally relate with the scripted games, they drive me potty too and I can only do it for so long.
I will say though that cutting out television helped a lot with him, and also cutting down a lot on sugary food which he seems very sensitive to. both seem to ahve an adverse affect on him and send him into some kind of overdrive and he'll by hyper for a long time

a while back our television broke. first day was awful... second and third days were great! no more asking for dvd's, no more sitting there like a zombie and refusing to do anything else, no more getting hyper as soon as programmes were finished... so now the tv is ok it's strictly limited!

[thisisyesterday]

also... do you get out much with her? do you have local HE groups and stuff? but also just places you can go where you can relax. I know some places that we go to make my life harder (soft play being one example) but we have a couple of nice secure parks nearby (so i know they can't escape!) where I can actually sit and relax while the kids play

[mummyloveslucy]

If you have any ideas for things for us to do together that we'd both enjoy I'd be really greatful. I just desperatly want to feel closer to her.

[belledechocchipcookie]

I think you need to contact the LEA and look for a school that's right for her. Is she currently being assessed or is she on the waiting list?

[mummyloveslucy]

Thanks thisisyesterday! I do have a DH but he works full time. When he has days off, he wants to go out with us, so we hardly ever spend time at home during the day. My mother in law has her while I sleep after my night shifts. I work 3 nights a week.
I'm half way through filling out her DLA form. It's been with me for about 4 months! It's so hard to answer and so long. I really must finnish it and send it off.
It'd be lovely for DH and I to be able to go to a local pub once a week, or for an evening walk. My MIL would have DD sleep at her house.
Thanks for mentioning the sugar, I'll try that and see how she gets on, wether it makes any difference.

[LetThereBeCake]

I've recently namechanged, so you won't know me, but I've followed your threads over the years. Your bad experience at school seemed to be at a private school with little experience and provision for children with your daughter's level of SN.

I know this is the home ed board, and I'll get flamed for saying it, but I think a good state school could be hugely better at helping your DD and educating her - much more than a childminder (unless said childminder has specialist skills in educating children with SN like your DD). Some state schools are open to flexi-schooling arrangements. Can you talk to your SALT about the sort of support she'd get in school - perhaps get her statemented and then you could work at getting her the sort of support that she needs?

You said "What I'd like is some sort of nursery/ reception class for her, just 3 days a week so that I can have a break and know that she's happy, with other children and doing fun things. I know this is impossible though. (I think?)"

The right mainstream school or special school could provide this for you. It is not impossible. Just because you know and love your daughter more than anyone else in the world doesn't mean you need to try to shoulder the burden of educating her and giving her the life skills she needs to thrive - there are others out there to help you, who have experience and skills, and if you haven't tried it, you may be missing out.

[thisisyesterday]

i find things where there is no expectation are quite good. ds1 often has an idea of how something will happen in his head and when it isn;t like that then there will be a meltdown.

so, we do things like going out to national trust properties (not houses, just outside ones!), going to parks, going swimming and stuff like that.
is there a hobby she might be interested in? ds1 is really keen to go ice skating but we don't have a local rink, but something like that may work especially because if she takes actual classes it's something you could watch from the sidelines and have a bit of a break, but you could also do it with her as well

[thisisyesterday]

oh wow and you work nights too!!!???! it's no wonder you're exhausted.

is there any chance you could cut down on your hours a bit?

[mummyloveslucy]

belledechocchipcookie- She's on the waiting list. She was recently acessed to see wether she should go on the waiting list for the full acessment.

She definatly doesn't want to go back to school. She said that children talking about school "make my heart beat lots and my tummy feels funny". I think it's affected her far more than I realised.
Even if she does get extra help, she'll be very aware that she's so far behind the other children, and so will they! She finds groups of children stressful too.
I'm sure I'd just be sat at home worrying about her.

[Bonsoir]

mummyloveslucy - I know your story and I honestly think both you and your DD would be happier if she could go to mainstream state school with in class support for her SENs. As you say, you need a break - and your DD needs a lot of help, the kind of help school gives, in order to develop. Sitting round watching Charlie & Lola all day isn't going to help her.

[belledechocchipcookie]

I really would have a look at other schools. She's had a bad experience and an understanding, supportive school will help her.

[thisisyesterday]

once she has been assessed properly and has a statement (hopefully) I think you'll be in a better position to judge what kind of schooling will suit her tbh.

it may be that she needs a special school for children with learning disabilities where they are used to changing children, and working with developmental delay and where she won't be so different from all the other children

or it may be that there is a state school that has good provision and where you feel they can deal with all her issues.

or, of course it may be that you still feel the best thing is to keep her at home, but you;ll maybe have access to extra funding and help to do this.

do you have a social worker or anyone else you can talk to about this?

[basingstoke]

I have read your posts before MLL, but I don't remember the whole thing. Did your DD start at the state school? Or did you home ed straight from the private school?

[mummyloveslucy]

I do take her to ballet, I watch her do that. She keeps talking to me though. She'll call out "look at me mummy", "don't watch them, watch me", "I'm hungary/thirsty" etc, etc. It's quite embarrasing! She does seem to enjoy it though.

I might have to cut down to 2 nights a week. My sanity is more important.

[MavisEnderby]

It is scary but I think if you could access help it really would give you a better quality of life for you your husband and her.You should have a SEN link person at your school,you need to ask.School and mixing with others is vitally important.What does your consultant say??Do school feel she requires a statement??Hopefully they will support and guide you in this.DD goes to a special school and is fully statemented from a variety of professionals and is very happy in this environment xxYou are doing nothing wrong but i think accessing support would be valuable xxIt is hard dealing with a child with sn,have you tried posting on the sn board??

[mummyloveslucy]

She came out of the private school after 1 term of year 1, then I home educated her.

She doesn't spend all day watching charlie and lola. We are usually out and about, or playing games, learning phonics ect, there is so much, but I need to get ready for work now.
I just didn't want to go without making that clear. I probubly didn't explain it very well.

[toddlerama]

I know of one lady intending to HE her autistic son who has been offered access to a tutor in her home one day a week by the LA. Perhaps contact them and see what is available? She might respond more readily to someone other than you, but would still have the security of knowing you were there / no big group of children to keep up with.

[Rosemallow]

I don't know what your full situation is and might be suggesting something you have already discussed on here etc but have you thought about a tutor for a couple of days a week?
I used to work with children with ASD whose parents weren't happy with the school provision in that area. We used to either work with the school (train their staff etc) and shadow the child and do some work at home with them too or just home ed.
Working with their family was an essential part of it too.
You could tailor it to however much/little tutoring you wanted and still work the way you want to. (behavioural stuff can be worked on too)
It might help to have a different person's input for both you and your daughter.
I have so many positive stories from when I used to tutor and know that the families we worked with really appreciated the respite.

[Rosemallow]

X posts with toddlerama
I used to work through a council for some of the tutees and it was funded by the local authority so it's definitely worth looking into

[exoticfruits]

Would she not be entitled to a TA in mainstream school? It is a huge help when they get one. I would contact the LEA and discuss it with them.

[mummytime]

I would also suggest you invest some effort at looking at State schools, they are much more set up for SEN children. If you get a statement you can name a school on it, so you really will have a choice (mainly).
State schools whilst not prefect are much more set up for SEN than all but specialist private ones.

Also in my experience ASD children tend to want routine, which it doesn't really sound as if your lifestyle gives. Could this be making things harder? (A genuine question as I don't know your child.)

[exoticfruits]

Have you looked at state schools?

[Saracen]

"oh wow and you work nights too!!!???! it's no wonder you're exhausted." My thought exactly! How much do you love your job? Now that you are no longer paying the private school fees, and with luck will soon be in receipt of DLA, could you afford to stop work or cut back to one night?

DLA can add up to quite a substantial amount of money, especially as it triggers other linked benefits. Depending on which DLA rate your daughter gets, these include Carer's Allowance (if your personal earnings are virtually nil - your dh's earnings don't affect it) and a higher rate of Child Tax Credits. You sound quite burned out at the moment but if you can clear some time and space to work very carefully on the DLA app, it would be a good investment in the long run. As you know, unfortunately it is a diabolically long and off-putting form and it makes a big difference if you know what sorts of phrases to use and if you can think hard about all the things you have to do for your daughter (some of which you'll have become so used to that you've stopped noticing). Here is an outstanding site which charges an annual fee for access to some excellent insider information about the process: benefitsandwork.co.uk/ I found it hugely helpful and consider it £20 well spent. By the way, if you originally downloaded the form rather than ringing up to request it, ring up and ask for it now. Provided you return it within six weeks, any payments will be backdated to the date you requested the forms.

The reason I've gone on so much about DLA is because it could give you more options to get some respite for yourself, perhaps by allowing you to give up work while continuing to send your dd to grandma as you do now, or hire tutors or childminders/babysitters etc. A teenaged babysitter might come in to play with your daughter while you get on with things elsewhere in the house. I certainly don't think you need to feel guilty about your new childminder arrangement!! If it's a good fit then it should be interesting, enjoyable and educational for your daughter. She is bound to get some experiences there which she doesn't have with you.

[Saracen]

"What I'd like is some sort of nursery/ reception class for her, just 3 days a week so that I can have a break and know that she's happy, with other children and doing fun things."

Do you think she'd enjoy "after-school club"? I mean the after-school wraparound childcare intended for working parents. These clubs are usually held in schools but run by external providers and therefore open to everyone. You could send her for a few hours every afternoon. Or, for that matter, there is "breakfast club" if she is an early riser.

School holidays are coming up. You might ring the local Children's Information Service to see about holiday playschemes. Where I live, there is an organisation for special needs children which provides a one-to-one worker who will go along with the child to any mainstream holiday playscheme you choose.

[Saracen]

By the way, Riding for the Disabled might be another activity your daughter would enjoy, to add to the ballet. In my area, waiting lists are long for after-school or Saturday sessions, but very short for those who can come on weekday mornings.

Though my dd's needs are only moderate, I've been moving more toward specialist SN activities for her. It is nice to go into an environment where the staff are really used to the idea that every child is different, rather than expecting the child to conform. Other parents and children, as well as the staff, are not at all bothered by children's quirks, so the embarrassment you mentioned at ballet disappears. I don't have to wonder whether they can properly accommodate my dd, whether she'll be the odd one out, and whether it is all worth bothering. And it's good to chat with the other parents. I'm sure that for most SN children there are some mainstream activities which will suit them, but probably there are a lot which won't!

My dd loves the special sports club we joined earlier this year, and I love the individual attention she gets and the can-do attitude of the volunteers: www.keenoxford.org/web/ They do weekly sports sessions, weekly drama sessions, one-off activities such as ice skating and "olympics" sports days, and days out. It's all free to the children.

You may be able to find a special activity centre which is worth travelling to for days out. For example, here are two near me which many families with disabled children love so much that they travel quite a distance to attend:
thomleyhall.org/
www.campmohawk.org.uk/

Have you asked round to see what's available in your area? It can take a lot of networking to find all these things.