Here some suggested organisations that offer expert advice on SN.
two children with SN - feeling low(35 Posts)
I have two kids, both with SN.
DS 7 has Developmental Coordination Disorder and low muscle tone. He is a funny and loving little boy, with occasional flashes of brilliance. But also very frustrated, angry, violent and unpredictable. He seems to me like a 3 or 4 year old in interests and cognitive ability. He has full time one to one in a mainstream school and gets full DLA. Uses a wheelchair sometimes, sometimes can trip over thin air, sometimes can run a mile. Completely inconsistent. Bites and pinches and hits and kicks other children. Bit his sister this morning so hard he drew blood because she "was too close to him". this is normal.
DD 4 has just been diagnosed with Global Developmental Delay, and I feel she has Sensory Processing Disorder, the seeking stimulation type. She is like a young toddler in a 4 year old's body. No impulse control, constantly mouthing everything, constantly falling into things, smearing everything everywhere. Not potty trained. Breaks and eats and makes messes like a 2 year old. Bites and pinches and hits and kicks other children. In the last week she has poured a pan of hot water over herself, eaten half a packet of neurofen, pulled several of my treasured house plants to bits, ruined all my make up (she can now climb up and get into high shelves and hiding places I thought she couldn't) amongst other normal bumps, falls, breaks and bites. Will not listen, still grabs hot cups of tea at 4, doesn't seem to know/care that they are hot! She can also be so sweet, funny and loving.
Together they are horrendous. It's so stressful, you cannot leave them alone without one attacking the other. Not just constant bickering, but pushing, biting, hitting. Constant screaming.
Both of them need so much supervision, it's like still having toddlers. They won't/can't play independently. Give DD pens/ paint she'll eat them. Give her a book she'll tear it up. DS can't read or write, isn't able to play with lego/jigsaws/ anything fine motor he struggles with. If I try and do an activity with one the other one sabotages it. If I try and involve both they fight. Try and cook with them, they'll spill flour EVERWHERE, burn themselves,
The only thing that will stop them fighting/screaming/ destroying the house is television, which I put on more than I'd like to have any down time. But I feel guilty. So we do go outside a lot. That does calm them down sometimes. But then they won't/can't walk very far, I end up carrying one of them. If DS is in his wheelchair they fight about that. If I have DD in her buggy they fight about that. They constantly fall over and bang into things and scream and hurt themselves.
I feel as if I exist from scream to scream as they attack each other and fall over and destroy the house. It feels like I'm on a boat in a storm all the time.
I hate it I hate it so so much.
I feel so guilty . I feel like it must be my fault , as they are both so difficult
I feel so guilty for hating it so much. I lose my temper and shout at them and I hate myself when i do it.
I feel conflicted. To some they look like normal children. Other parents complain of their children fighting, of being difficult, am I just a crap mum and all this is relatively normal and I just can't cope with it all.
I'm confused. I alternate between thinking it can't be this bad, i'm just making a meal out of it all and then being terrified for their futures and how difficult life is for them .
so stressed, adrenaline all the time. feels like I have a baby and toddler still ALL THE TIME.
any one ????? needed a rant to cyber space.
If the TV helps, use it! Do not feel guilty. I found with my ds that the only time he relaxed was when watching something on TV (now it's PlayStation and YouTube...) so I used it. The world is a tough place for disabled kids, giving time for them to settle is important, screen time can be therapeutic!
You probably need to investigate proper door and cupboard locks for safety.
Do you have a garden?
yes and DD loves her trampoline, that's good therapy for her.
but if they are both out there then DS comes on the trampoline too and spends all his time either accidentally or intentionally bumping into her and hurting her, so there's more screaming. other than that, even though it is a big garden with a den, trees, vegetables, sand pit, playhouse, buckets, balls, bikes etc, they spend all their time in it fighting over wanting the same thing or being in each other's space or just wanting to be carried or wanting me to play with them and then fighting over me or just running around banging into things and falling over and screaming or just screaming because of something.
yes yes cupboard locks. and gaffatape all my plants to the ceiling. and anything else that they can eat or break or destroy, which is everything
It is so difficult isn't it I have 2 dc ds is 3 1/2 has autism clubfoot and now looking into arthritis dd is 9 months she is being watched closely as she seems to have a weakness on one side of her body , she has also suffered terribly with reflux since the day she was born and cried more or less constantly it is bloody draining my ds isn't really into anything apart from tv and iPad and there on more than I like but .. If I didn't have them I probably would have had a breakdown by now !!! Do not feel guilty your dcs are quite clearly loved very much and well looked after don't beat yourself up x
Existing from scream to scream... That summed it up perfectly. You're not alone and nope this isn't typical. You're not making a Meal out of it. People have breakdowns all the time in the toddler years and your toddler years (like mine) are going on for a much much longer time.
Don't feel guilty.
Use whatever you can to self preserve your mental health too.
Lose lose lose the guilt.
Cyber hand holding with you. I'm going through the same thing.
In times of sheer mad moments I desperately try to picture a rare smile memory in my mind of each of my dc to help ground me in that moment. Almost like a mini meditate session for a couple of seconds
that's all I have it Doesn't help all the time, just some of it.
It sounds as if what you really need is another adult, an older child (say 13/14?) or teen to come and help do the "play" so they get used to playing together a bit more comfortably. Sometimes it takes a long time for siblings to get into any sort of rhythm; as you say they are so busy trying to get attention from the poor exhausted overworked parent (you and I) that they forget how to actually get on or get pleasure from each other's company. And they feed off tension too.
I found that sometimes I made a lot of work for myself in the sort of play I wanted my 3 children (two with SNs but not to the same extent as yours) to have with each other. So much of the play that you might think children of that age would enjoy can go dramatically wrong, they hit each other fall over, throw sand at each other, bring mud into house, and just send you berserk when you thought it was meant to entertain them (and give you a break) Could you focus on activities that really are less stressful for you, that you can do in the garden. What about those pop up tunnels that they could crawl through. Or space hoppers that they can bounce on?Put away things they can fall off or hurt each other with, like scooters or bikes, and concentrate on big plastic vehicles (if you have them or could borrow one) My kids were no good with paints or drawing stuff, or cooking (although ready mix kits were better if you are desperate to bake) again you could just stop worrying about that for now. What about etch a sketch or aquadraw. A big garage with lots of cars. Some music tapes or story tapes for quiet time when you do not want to switch telly on? Cardboard books (mine used to tear lots of books, I know that feeling, ds1 also chewed all the books) Reduce the number of toys around (put them in a box and hide them all) and just go for space to run around in indoors, with a few big cushions to jump on? Get rid of small toys, like playmobil figures or fiddly bits of lego or duplo/teasets/pretend toolkits, garden implements/play kitchen stuff that they can drive you insane scattering, bring them out only when you want to make a point fo doing it in a structured way (if at all). Dancing is good for children who aren't much good at entertaining themselves, but not heavy rock beats, more the special children's dance tapes which are less over stimulating.
Out of Synch Child has Fun has good suggestions.
I think telly is fine too, what helped for me is if I occasionally sat down too and watched it with them and tried to enjoy it too with a cup of tea, just tried to have a break with the children and relax too. Sort of destressed me for the next bit of the day. And more instant meals too would have helped me. I wish I had cooked less or cooked in bulk when I felt capable of it (which wasn;t often) Baths with bath toys are another thing which worked for us, at any time of day, turn them into an impromptu fun activity rather than jsut somethign you do at bedtime.
I completely understand how you feel and I'm sorry you're having a bad time. I also have two with SEN - they are 14 and 7. The 14 year old is severely autistic with comorbid conditions including epilepsy and possible Tourette's. The 7 year old has developmental coordination disorder, processing problems and suspected ADHD. They are not a good combination at all because dd1 doesn't like dd3's unpredictability and constant shouting / bursting into tears if things don't go her way.
I also have a 12 year old who is NT - she's not a typical child either but she's lovely. Actually my other two are lovely but juggling everything is exhausting.
I do get where you're coming from - it's a nightmare isn't it?
Things to chew for dd? (Check out chewable stuff in SN products) Overtiredness contributing to bickering, masquerading as not being tired at all but hyper? Quiet small cosy spaces which aren't play spaces but they can curl up in individually with blankets and/or sleeping bags (dd loved sleeping bags becuase they were like cocoons for her) Limiting big social groups for her?
Is there such a thing a a double pushchair for SN children? Forgive me if this is not something that exists.
Lots of snacks to hand so that she doesn't feel need to search for food or snatch things to chew, satisfy food cravings. Sucking through straw to increase satisfaction and help with oral stuff/concentration.
No superrmarkets, except at quietest time of day to buy just two or three items which child picks out themselves to "help you"(forarmed with snacks or treat before you buy anything from supermarket). No long outings which involve any waiting around. This is just off top of my head, remembering stuff.
Musical bumps was a game my three loved, as it had bumps built in! And rolling on the floor on a duvet, they liked that. Or being rolled up at bedtime.
Yes. From scream to scream .
Thank you for that smile meditation, that's a good one x
Yes, it feels like 7 years of toddlers. Broken sleep, mess, screaming, constant supervision, entertainment, washing, cleaning, carrying, explaining, nappies, violence. Apart from they are in bigger bodies, attached to frustrated little minds.
Thank you for all the suggestions. Believe it or not, I do already do a lot of it. Music and story tapes is a good call, as is remembering about wAter. I've already put most of the toys away. They have about a dozen each ( cars and drums for DS. Cuddly toys and dress up for dd) and then books and art stuff. Nothing else gets played with. It just gets emptied out or destroyed.
Thanks for the solidarity.
I feel so stressed just now I'm finding it all so hard.
Cross posted with little Lou and knitting. Thank you for suggestions.
Does this feeling ring a bell? Being totally exhausted at things to research and try and do, and feeling like it's just more work? So sick of the constant appointments and proffessionals and opinions and referrals. Knackered.
But having said that. Thanks for suggestions, will go over and look.
Can I ask about discipline? I never can decide what is appropriate?
For instance when DS bit DD this morning? I sent him to his room for an hour. explained it by saying that when he bites, we cannot trust him to be in the same room as his sister any more.
And when DD broke my plant today I saw red, I must admit . It was a special plant, a cutting that I took from my mother'so plant before she died last year. Not a day went past with me looking at it and feeling calmer and closer to my mum. And when I saw it broken ( on purpose. No accident. ) I got one of her toys ( a bed I'd made for her doll) and snapped it in two. Usually she doesn't look at all affected when I tell her off. But she wept and was angry for 20 mins or so. Will it make her understand?
Just wanted to send a hug of solidarity... We have 4dc and 2 have diagnosed SEN and 1 potentially SEN and its relentless. Exhausting. I had an awful day today but thankfully opened up to some friends who reassured me that it's ok. It's ok to feel shit / frustrated .... All parents do at some point so why not us
No breaking her toy wasn't a good idea, but we are all human.
I think you need some help at home. Someone to step in a bit so you can centre yourself. I recognise much of what you describe. You are too tired and this is too big for one. Find some help. Whereabouts in the country are you?
I'm wondering if you've got yourself trapped in a horrible cycle of tricky behaviours > losing temper > raised anxiety all round > more tricky behaviour?
It's easy to do when we are exhausted. Sometimes it's best to draw a line under it, do what you can all enjoy, stay calm and move forwards. Remember toddler taming strategies, use them! Distract and divert, be silly.
But you need to put special stuff out of reach, maybe have one room (your bedroom?) with a lockable door. Make it easy for them to not be tempted!
i just feel so angry that i can't even have a plant that I love on a shelf in my kitchen. I can't keep my make up on my bathroom shelf. I can't leave a cup of tea unattended on my kitchen sideboard for a minute. When they are babies and you need to baby proof, it's somehow not so bad. It' s only meant to last a little while. you just put most things up high. But now they are climbing on the kitchen table to reach up to shelves and break things. I do have a lock on my bedroom door. But somehow she always finds the moment it's unlocked.
I know i'm ranting, and i probably have got myself trapped in a negative stress headspace that isn't helping, but I've been doing this baby proofing, ignore and distract, for too long now, I want it to stop. I hate it. I want them to sit and draw, to play together, to eat a meal without smearing it in their hair and dropping it all over the floor.
i'm sulking and shouting it's not fair at the internet tonight :-( for all the good it'll do
there is no help. parents died last year. siblings in england, i live in scotland,
inlaws eldery and can't cope with kids
Buy help. Use your DLA and buy in some support.
I have no support either really.
You can do this.
You can make it work and they both will develop and much can be achieved.
Have you asked social services for a care assessment? It sounds as though you really need respite. My older daughter gets overnight short breaks and also direct payments.
What are the most difficult times for you?
I'm just wondering as well what help your children are getting at school because if they're not supported properly it will affect their behaviour at home.
DS gets full time one to one at school. They support him very well.
DD goes to nursery Monday and Friday all day with her funded place. She goes to a playgroup for a couple of hours the other three afternoons a week which we pay for with my sons DLA so I get a break .
I think we do OK. It would be good if we had family who could help out and have them overnight or for a holiday sometimes, but we don't. My in laws used to but they are getting older and MIL had a hip replacement and the kids are too much work for them.
Usually I do just get on with it. I usually see the best and look for the positives and support them both as best I can. But I just needed a rant yesterday. I think it was the plant that really upset me.
Most difficult times
When I'm on my own with both of them. They won't play. The compete and fight for my attention. If they try to play together they end up accidentally hurting each other and invading each other's space, and therefore fighting. Or if I give them individual attention the other one get s bored and jealous and destructive.
Mornings are hard as my son gets up between 5 and 6 am . My daughter still wakes in the night. dH and I take it in turns to get up with them. School run is hard, getting them both dressed and out on time when they won't/ can't help is ridiculously stressful. But seeing as we're up so early we have a strict routine and give ourselves lots of time. Usually manage it, just so hard.
To be honest I usually manage everything. I just find it all so hard.
It's not what I imagined life to be . It's not what I want. I know that it's better if I stop self pitying, look for the good and am thankful for the good bits. Just needed a rant x
Thanks for kind and helpful words.
Yes, sometimes you just feel like enough is enough! It definitely sounds as if you would be entitled to a care assessment though. Do your children have a social worker from the children with disabilities team? If you didn't want them to have overnight respite you could get direct payments and pay for someone to come and help with your dc's or you could use the money for a cleaner. Your dd should be entitled to DLA too I would think.
I think they both sound eligible for DLA. I'm not sure it's helpful but most of us don't have relatives to do childcare. I think sometimes it seems like everyone else has tons of support which can make you feel very isolated. I got a strange solace once I realised our situation was the norm really.
Ds didn't use my name till 4 but at 11 tells jokes, reads, makes himself toast, and though still requires supervision can entertain himself for hours. I didn't realise how much he would develop or how crazy fun life could be.
Hang in there.
Yeah, I just haven't had the energy to do the application for her yet.
We do pay for a cleaner already with my son's DLA. That definitely helps a lot.
I kinda don't want the interference of a social worker. I already feel that our little family is swamped by physio, OT, ed pysch, neurologists, health visitors . There's enough appointments and forms and boxes ticked. And to be honest so far none of the therapists have been particularly illuminating. They've told me nothing I couldn't already research myself.
I really hope they become interesting wonderful adults with their self esteem still intact. I really hope they do.
Was nice this morning. dS asked me to read him "you're so clumsy Charlie" ( as he does everyday) and we got to the bit where all the teachers are shouting at Charlie and DS said that they don't do that at his school, They help him. That felt nice :-)
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