Feeling quite overwhelmed andnot sure which issues to tackle first.(25 Posts)
Hi, my 7 year old daughter has a developmental delay, severe speech disorder. She is home educated.
It's probubly easier if I make a list of things Ineed to address.
* Constipation/ soiling. She can soil herself up to 6 times a day. She hates being cleaned and won't clean herself properly either. I have to shower her every time, as it's the only way of getting the poo out of her vagina (Sorry for too much info). She is on movicol but refuses to drink it.
* She doesn't drink enough. We've tried so many different drinks, but she'll just have little sips and we'll be lucky to get 2 small glasses down her a day. Her Movicol is also given in juce, so often she doesn't get nearly enough.
* Her behaviour has got very bad, particulaly in shops. She doesn't like shopping, so we only go when we really need too. She'll keep grabing things, demanding things and running off. I'm really not sure what form of discepline to use in public to be honest. At home, I'd send her for time out. She is also very bossy and demanding. She always has been on and off but it's getting much worse.
* Self help skills. I'm trying to teach her to dress herself but she has no interest. She'll just say "No, you do it!" or run away screaming with laughter if I try to catch her. On the rare occasion she does try, she gets so frustrated and starts screaming if she cant get her arm through or something.
* She is a bit overweight and eats loads. I've never heard her say "I'm full up" but she says she's hungery all the time. IT is usually healthy food, like bran flakes for breakfast, egg on toast, cheese sandwich on granary, fruit, yogart etc. Although she does like her crisps, ice cream and biscuits.
We don't have this in the house, but she eats a great deal of it at her grandmas who she sees a lot of.
* Hyperactive, not listening or paying attention. She's quite hyper most of the time, constantly chatting or singing or making up stories. She's always been very demanding of attention. She has a private swimming lesson once a week but she finds it very hard to listen to what's being said. She'll keep going under water when he's talking to her, doing something different to what he's asked. It must be so frustrating for him! She does love her lessons and really likes him too. When at home, she will pay attention for short amounts of time, if it's one to one with no other distractions at all and lots of praise!
If anyone could give me any advice as to how to deal with any of these issues or ways to organise myself better or some structures to put in place, I'd be really greatful. I must sound like a terrible mum! Perhaps I am. I just can't seem to get any of thses issues sorted.
I'd better add, these are the issues we are having problems with. There are so many wonderful things about her so please don't feel I'm putting her down. She really is a poppet and I really want to help her.
Does she have any sort of DX?
Does she see any specialists? Does she really poo up to 6 times a day? (I am not sure if you mean wees as well)
Have you thought about a dietician?
They just call it a developmental delay. She was tested for ASD but it was negative. Yes, she really does poo up to 6 times a day, but it's never very much at a time. It's about a teaspoon to a desert spoon sach time.
I haven't thought about a dietician, maybe I should!
Hello, on the poo issue. She sounds a bit constipated and impacted. This can cause soiling.
Can you get her referred to a constipation clinic. And also perhaps have an experiment with hiding the movicol. If she does like her food. Perhaps in a milk shake or ice cream?
Not sure about the other issues. But I was thinking only the other day you hadn't been on for a while. I remember Lucy from being about four and in the horrible (for her) school.
Have you got anywhere identifying a school for her yet? Or staying with hs?
My DS is nearly 4.
I think he has ASD, though his IQ is way above ave, his social skills are poor.
He sounds a bit like your DD, except about food / toileting.
DS hates most food (won't TOUCH choc / cake / sugar of any sort) and his toileting is a bit OCD (has to do it all himself, doesn't like to be watched)but the other stuff sounds a bit similar.
I am doing a lot with food / drinks about what can help his concentration. Have had some interesting results.
I'm also embracing simplicity parenting (less toys etc) which is really helping his concentration.
Sorry, meant to say you sound tired. It is clear you do your vey best for your daughter.
Yy, def sounds like encopresis, but presumably that's what the movicol is prescribed for.
We use lansoyl, which is like raspberry jelly. Essentially Ds had a series of three enemas which cleared him out, and then takes lansoyl twice a day to keep everything moving (he can't withhold). If he soils heavily, he gets another enema.
Has she had full psycho ed testing? Been tested for ADHD? She's old enough for a med trial if you are keen that way, if not I would whack her full of omegas and zinc, and Epsom salt baths to see if that helps (can't remember if you do this routinely anyway)
And buy a trampoline.
A few thoughts, anywa.
<she isn't pooing six times a day, btw, it's leakage...>
O.k, epsom salt baths, Zink, I'm going to write this all down!
I know it is lealage, usually but occasionally she will just do a solid poo in her knickers because she says she prefers it. It can also be behavural.
She's seen an incontinence nurse who's said it'll take years to get her bowel back to normal.
She had an ed psych when she was at school. She hasn't been tested for ADHD. I wouldn't be keen on the medication anyway so I don't think it's worth testing for.
It's been another nightmare of a day! She's weed on my sofa because she was too busy playing with her toys, as she put it. She's been manic all day, then refused to do as she was told at swimming, then wouldn't get out of the pool. Saying "Come and get me then". When I got her changed I noticed she'd leaked poo in the pool. (I know this isn't her fault) Not sure what to do about it.
I'm so peed off with her at the moment! Is this a phase or is she just getting so much worse? I'm even thinking of putting her back in school
What does the paed say?
It might be worth discussing the enema route if it is behavioural in origin to an extent. Ie introduce some consequences. (one of our gps said that we had to get Ds to wash his own underwear and trousers when he soiled. Or that we should send him to boarding school, as he wouldn't do it there)
The weeing can be linked to the encopresis tbh. V common.
Yy with the long time. But it won't happen at all whilst she is still impacted with no change. When is your next review with the inco nurse? You have to clear the impact ion and then give the nerves time to get back to normal. And for the brain to start hearing the messages.
I'm starting the decompation process again. She's having 2 for 2 days, then 4 for 2 days, then 6 for 2 days. We have to get 2 days of very loose before we can reduce it. It isn't very fun for either of us but I really think we need to do it.
To be honest, I don't want to phone her nurse to tell her because then she'll know we've let the movicol doses slip. I find that everything I try to get her to do is a battle, so things do slip from time to time.
I could get her to put her own washing in the machiene, but she isn't capable of cleaning herself properly, or even dressing. She can put on knickers and loose trousers with a struggle but not t-shirts for some reason. It's interesting what you say about boarding school as my daughter very rarely soiled at school. This did cause more problems at home, as she was holding it, which made the condition worse. She'd be soiling none stop at home.
Sunshinenow- Hi, yes it's been a while since I've been on hear. It's a shame I only really post when I'm at my wits end. We do intend to home educate her for the forseable future. She's a lot happier anyway and there is so much more freedome. The kind of school I'd want for her doesn't exist, or not around here anyway.
Oh yy, the laundry thing doesn't work anyway and introduces a whole other set of issues.
Keeping up with the meds is hard, but the impact ion can get worse if you stop the dosage pretty instantly, so really important to keep up with it.
Have you been doing desensitisation stuff and making her toilet when you are out and about? Really important to get her used to doing this now. Tis a nightmare when they will only toilet at home. Ds is the same.
That's basically what we do, sunshine (the 'buy my manual' link). It's only in cases where the 'top down' method has failed for six months, and uses 'bottom up' instead.
They use suppositories to instigate bowel movement and then enema if that fails.
Our paed uses the lansoyl to make it harder for Ds to withhold (not to soften the impact ion iykwim) and then enema to get rid of it. And the risk of enema means the kid works out pretty fast that sitting on the toilet and working on bowel movements is preferable to the enema....
I'm not sure I'd fork out for the advice though...
I have no idea what you are going through but I'm reading this book at the moment
www.amazon.co.uk/Gut-Psychology-Syndrome-Depression-Schizophrenia/dp/0954852028/ref=sr_1_1?ie=UTF8&qid=1336078396&sr=8-1 it may have some thing in it you can use, I think diet and behaviour are very very linked and it might be something to try.
You are not a terrible mum, it sounds tough, especially home ed too x
Yy, gaps has some good ideas but it can be quite difficult to implement. The omegas and zinc (and magnesium bath) will give you an idea if it is worth looking further. Gaps does take a lot of effort, and if you are struggling to get movicol in regularly, then it might not be practical.
Thanks everyone. I've re-started her olmega 3, bought some epson salt for the bath and I'm reviewing her diet. I've bought her some hurbal remedy, recommended on another thread. I think it's called Behaviour Calm or something. She's had a dose of that today.
We have actually had a better day today! There have been a few little wobbles, but on the whole she's been very good. She's also had several big bowel movements today, so that might've helped.
I think you need to go back to your gp or paed and get further referrals if you don't have a regular review for her developmental delays set up. There should be more support for her needs available but as she is out of school there is a risk she'll fall below the radar. Has she been tested for the likes of ODD, allergies/intolerances ? Children need to be well hydrated to focus. If she isn't drinking and may be overeating on foods she tolerates less well like bread (gluten) that could affect her concentration and behaviour. Also bear in mind that tests done 2 years ago may need updating.
I know you are set on HE for now but I really think you may benefit from some external input to get put of the negative behavioural cycle and guide you both educationally. Sometimes children will do things for others that they won't for parents ! For example do you need to be poolside at swimming ? If you weren't as accessible she would n't be able to play on you .
There is a danger that, in your semi-isolation, you may lose touch with what her peers are doing and as she gets older the gap may widen academically and socially.
Have just read your thread and really feel for you as I had a soiler for a number of years. I just wondered if your DD had also been assessed by an OT. Attentional difficulties often come hand in hand with developmental dyspraxia which could be why she finds dressing such a frustration. My DD was investigated by CAMHS for ADHD and also got a referral to an OT via them. Would def go to GP and request referral to CAMHS/OT. Also , picking up on LIZS point, as part of the NICE guidance for Attention Difficulties a number of local support networks have been set up for parents. I attended a parenting course, met some other lovely mums and now we have a facebook group that is a really good support. You do sound tired and I know that feeling so heres a
You have it worse than me. I am sorry. Your other thread on the poohing I was probably quite unsympathetic. She will have to drink more to prevent constipation or what about a fruit puree. Apples without their skins. Kiwifruit, prunes etc. I too think that sooner or later some other diagnosis will develop - no pun intended. What about pervasive DD. It is under the Autistic continuum and shares features of ADD and/or ADHD. Back to DD. This can cause physical problems as well. The leakage may be the problem of a muscle not being strong or developed enough. Holding on won't help. Giving lots of time on the loo at her best time of day may. So sorry for you. Do you qualify for respite care. Don't feel guilty if you take some. Have you a friend whom you could teach to provide care at times?
Could you put her constipation meds in fruit purée. Dd has had episodes of soiling and I usually get it under control by giving lactulose in the fruit purees you buy for babies. You have a list of issues there. I have a dd with asd and I have found it easier to focus on one thing at a time. Otherwise I tend to eat very depressed and overwhelmed. I have found backward hailing useful for self help. Eg I brush her teeth and to start with give her brush at last minute to do a swipe at her teeth herself. Gradually build up to her doing more herself. With dressing I used to put her sock on her toes and then get her to just pull over the last bit etc.
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