Our SN area is not a substitute for expert advice. While many Mumsnetters have a specialist knowledge of special needs, if they post here they are posting as members, not experts. There are, however, lots of organisations that can help - some suggestions are listed here. If you've come across an organisation that you've found helpful, please tell us. Go to Special needs chat, Parents with disabilities, SN teens, SN legal, SN education, SN recommendations.
Exhausted physically and emotionally...(32 Posts)
But this is just the start of our voices being heard.
Ds1 is 3. For 2 years we have been back and forth with varying intervals to gp & HV with concerns for our son. Well, I say we... Naturally myself as mum has made and attended all appointments albeit with discussion from dh. Finally I snapped and told dh he had to be at one meeting as I felt
I was just repeating things over and over like a broken record, and being ignored as a 'neurotic' mother, or getting sympathising nods from people who I felt the whole time were looking on me as a mother with pnd who simply wasn't coping. I thought maybe some input from dad might help us find a way through.
Well it just about opened every bloody door!
We have a referral for a pediatrician.
HV visits regularly, and always calls back.
We've been invited to attend a support group for children with additional needs.
They're even getting us to fill in a form for dla.
I am torn between being angry that its taken them listening to dh to act and relieved that someone is actually listening to us. Proper listening, making notes and suggestions. Not just paying lip service with 'well you've got a lot on your plate', 'boys will be boys/challenging/active', 'typical middle child' 'it's just his age'.
I think I struggled because ds was our first boy and dd1 was so laid back as a baby/toddler I'd poke her while she was asleep to make sure she was ok
Ds1 was so categorically different that tbh it was easy to say it might be a boy thing.
That his constant need to be on the go was normal for a young boy. That boys are naturally more physical in their expression of emotion.
We were told 'boys are more clingy than girls'. That they are less verbal than girls.
'Its natural for dc to want to play with a favourite toy all the time'.
But dh and i felt ds1 pushed things to the extreme. Like the time he screamed solidly for 3 hours for no apparent reason. And nothing would get him to stop. Dh was at work and unable to leave so I drove to our nearest town to buy chocolate! He screamed all the way there and all the way back. I phoned the HV knowing it was a weekend evening and they wouldn't be there, said 'this is what he has done since 5pm and let him scream down the phone for the rest of the time the answer phone would take my message.
His obsession/knowledge of Thomas the tank engine is legendary. Heaven help if you accidentally call an engine by the wrong name. He plays Thomas, watches Thomas, wears Thomas. All his toys he will take out the parts according to the colours of his favourite trains. I'm sure he'd eat Thomas if I wasn't so stubborn!
Meal times! My previous excellent eater has turned into the fussiest person I've ever known. Texture/flavour/colour. All have to be right. And even then, if he's not in that frame of mind his most favourite dishes won't be eaten.
I could go on, and on and on. But I'm guessing so many of you have been or are in similar situations.
But now I'm broken! I'm exhausted from feeling like I'm talking at people and now they finally start to listen. Even my parents (who've been known to describe ds as a little thug ). Finally my mum has turned round and admitted she doesn't know how I do it. How I get through the day with a stubborn 5 year old, a 3 year old who can throw a new curve ball several times a day, everyday and 1 year old twins.
All this is just a small fraction of what ds is like. We've not touched upon the rage that can consume him. His compulsion to do something, anything no matter how dangerous or who may get hurt.
Finally we are starting on a road where we may get some answers. Whether we want to hear them or not remains to be seen. But finally we have a voice which can be heard.
You certainly have your hands full! I'm glad that you are finally being listened to. Hopefully the paed will now undertake a full assessment and arrive at a diagnosis. I don't know much about pre-school support but I expect someone one here will be able to advise.
You sound utterly and understandably exhausted. I hope you're getting some help now. Everything changed for me when I got in touch with Parent Partnership in my area, they act as support and advocate for parents and help you through the oceans of red tape and tell you about the processes, what help is available, etc. Give them a call. They'll even come to meetings with Dr's, nursery, etc with you to act as your advocate and make sure you get what you need. Good luck and keep your chin up. You're not alone. http://www.parentpartnership.org.uk/
I hope this is the opening of the flood gates of help. I have been where you are, it's not nice. So hard saying the same thing over and over and over again.
The pediatrician route today has been cut off. At least for now. I had a letter today. I hate that these things arrive on a weekend. They won't see him until nursery have some input. This is a preschool who has had, in the last year, 4 changes of staff and is due another when my dd's year 1 teacher goes on maternity (current preschool teacher was actually brought in to cover her maternity leave). The preschool who doesn't see what we see, or at least doesn't record it if they do. Even though ds is the only child who is allowed to take a (thomas) toy with him when they come over to the main school as it stops him running round the assembly hall as much. Whose default is to get Thomas out when ds is having a bad day as they know it will help calm him. But no, there isn't a problem.
I have had my tears and now I am angry.
I keep telling myself he is only little still and I know people have battled for much longer, so this really is just the first step on a very long road.
I've told dh come September I'm bloody tempted to tell preschool that ds isn't allowed to play with Thomas as its just giving in to him, that he needs to join in with the activities that have been planned for the day and nothing else. let them see how they manage a day without Thomas.
Wildwood - thanks for the advice about parent partnership. I think it's something I need to look into.
I have a hs volunteer and they have been very good as the rules changed after mine started, limiting them to 6 months only and I've had mine for a year and have been asked to think long term about letting her go. But her support is invaluable in just letting me get some housework done while she entertains ds for me for a few hours and stops him destroying the house!
Stay angry - you should be.
Use that anger to write back to whoever is denying you that appointment with the Paed and say that you disagree with their decision and want assessment to begin now. Copy the letter to PALS so the Paed knows you mean business.
It sometimes seems a bit daunting at first to challenge 'professionals' such as a Paed but this is what you have to do to get the services you need - shout loudly and get to the front of queue.
You 'll soon realise that that's how things work in the crazy world of SENs.
Thank you wet. I did have such a good cry! I think it was the feeling that finally we had people listening to us and then...
We've had two such bad days with ds (I think the letter probably didn't help my reaction though) that we've had to take the decision he can't go on a day out to the zoo my mum was planning for tomorrow. She's quite upset but I've had to point out there will just be herself and I as responsible adults, my 13, 8 and nearly 3 yo nieces. Plus my 5yo Dd, ds and then 16mo dts.
If he had a meltdown or decided not to cooperate, or didn't like the busy-ness of it all, then we would struggle. It wouldn't be fair to ds or to everyone else. So he has gone to my inlaws for the night tonight and knows no different. I doubt he will even care tomorrow when dd tells him what we have done.
Instead I've told mum we will take him when the dc go back to school. We will have less children and it won't be quite so busy over all. Mum is upset that he will be missing out
Good - you're learning to plan around him. There's no point dragging him along as no one would enjoy it.
Reading your original post again - I got the same platitudes from HV etc when DS was about 3. 'He'll grow out of it', 'He's expressing himself' etc etc and the feeling was that he was just a naughty child who could (and should) snap out of it. - Eventually (at age 15) he was diagnosed with Aspergers.
You have had a lot of children and therefore have a lot of expertise and if you believe something may not be quite right with your DS then trust your instincts and demand that the paed reconsiders the decision not to see him. Perhaps you could also use your HV to lever things for you too, But definitely force the issue and get a Paed appointment. It's so much easier when you have a diagnosis and know what you're dealing with.
Enjoy the zoo!
We did enjoy the zoo! Ds wouldn't have managed it. There were some very rude people jostling our little ones out of the way so they could get a better look themselves - grown ups at that.
Ds came back from nana and grandad's much happier, threw himself at me for cuddles and keeps coming back for them throughout the day. The 2:1 attention really does help him. Although nights are not good and he is currently asleep on a pile of pillows at the side of our bed. This started last night after he didn't want to be in his bed and didn't want to cuddle me in ours. I have spare pillows which I put on the floor overnight and last night he decided he wanted to sleep on them. I figured he's comfortable and if he sleeps rather than tantrums it helps us all.
I also text one of the children's centre workers and left messages for another and our HV about our knockback. Typically HV hasn't returned my call. So I shall simply call every day until she does (or turn up at the next clinic). But I've had messages back from both children's centres saying as soon as they are back off leave next week we will get together and work out a plan of action, including appealing through pals.
I've written a long and possibly angry letter saying i feel they should reconsider and the effects James' behaviour has on him and on us. I shan't be sending it but its got my feelings out and given me some material to compose an appeal with.
Glad to managed to get some relaxing down-time (and so did he). Thinking about things from his point of view is useful. It stops you planning things for him that he will not like.
Yes, you're discovering with HV that they disappear back into the shadows when there's stiff they should be supporting you with. But very glad to hear that you will be pursuing the Paed appointment.
Simple - don't take 'NO' for an answer.
I've written a few letters like that in my time too - but I've also posted some of the more polite ones
Please let us know how you get on with securing Paed appt.
Just remember YOU are the expert with your child. For what it's worth Flyingboy was awful at three, major brown stuff hit the fan when he started school and we had quite a rocky time. Things got better. The thomas thing died down aged around six I think although his major obsession was washing machines. The three hour screaming for nothing oh am so with you. Been there, done that. We still have rocky moments when anxiety kicks in. I still have sleepless night worrying about him. But he's the nicest, loviliest young man in the world who helps and is very good now at housework so obsessions can be useful
I did go through a stage when I sent husband off to school meetings because the panic attack they induced in me wasn't worth while. Your husband has to go into battle for his son and protect your mental health and welfare. Sadly, professionals, who are often women, do seem to take far more notice of a male in Alpha mode than women. As women we get derrided for being too pushy, being aggressive, disciplining too much, not disciplining enough, being soft, being hard, being weak, being too busy, having too much time on our hands, being neurotic, being uncaring. All this, most,y from other women who are quite often womens lib, Guardian reading in caring prifession professionals. Pisses me off. C an you tell!
Good luck. You are doing a brilliant job. I would suggest you look at a different preschool, preferably one that uses maketon and has experience of ASD.
We don't have much of a choice with preschool at the moment. We live in a small village with one school/preschool. The school itself are brilliant but its just not translated down to preschool yet. Am joining committee come September anyway so maybe I can help a change...
Re the paed appt. dh saw our gp this week as he is so run down through lack of sleep. She is going to write to community paed herself and then if we get another knockback we will pursue pals. She was quite scathing about the lack of contact from HV. It's not the first time people have grumbled at the drs about her. Dh is putting in a complaint about HV too.
Ds went to Cadbury world with my sister this week. I was in two minds at letting him go but my sister's youngest wasn't going and the two elder girls are much older. This meant ds had pretty much 1-1 with his auntie. The trip wasn't too bad apparently but ds did start head butting people while queuing and looked lost and confused a lot of the time. I think it may have been busy though. We paid for it when he got home though, or rather when we got home. My mum babysat at ours that evening so we were out when ds got back (pre-planned evening with friends). As soon as we walked in the door ds was awake and that was it for the next few hours. I feel he was back in the safe environment of his home, with his parents and just let go of all the anxiety he had built up over the day. We had tears and tantrums, screaming, he didn't know what he wanted or what to do with himself. It ended up with me holding a fighting ds until he finally gave in and dozed off. He's been like a tightly wound spring since. Slightest thing and off he goes.
DD (7.5) has aspergers/adhd, and I can so empathise with you on the release of tensions once in the safety and security of home and you and DH. Loads of people, including close family, never saw what we saw. Because she was good at staying reasonably in control "in public" and letting it all out when safely home with us.
It took years for us to get anywhere (from noticing, through asking for help, to finally getting seen and through that process) - we got her Dx 18 months ago now having first started to ask ourselves about DD when she was about 2. It probably didn't help in our case that she is an only child, the first grandchild in both our families, we are living 160 miles from both sets of parents, and I am the first WOHM in the family - so it was all different to what everyone else knew and lots of things were out down to us "being first time parents" and "both out working and DD in creche", even when we were questioning it ourselves (and creche were supportive of us too, although DD is high functioning so it wasn't clear to us or them that it was SN going beyond "normal" (perhaps somewhat difficult) toddler behaviour until near school age).
It means we can read up and talk to other parents about exactly how DD is "wired" and how to do things so she will understand, get disciplined, learn, respond to us, and enjoy life - rather than just doing things the way everyone else does them and failing (because she doesn't understand consequences, or is too hyper to hear what we are telling her, for example). And a side effect is that, although we asked to find out how she worked so we could work WITH her rather than against her, it means she has a "label" so while others may not understand the label, they understand that she is different and will make some allowances for it. (And we also get help from school not just in dealing with daily routines etc, but resource time which is working on a social and emotional education programme).
I am the diary keeper, the arranger of appointments, the person doing the courses, etc. DH is very much on board, but has had to accept a project based far-off abroad 50% of his time (2 weeks away, 2 weeks here cycle) due to the recession (and works when here too in local office). He can be much better at spotting and remembering triggers.
But we try to make sure that, if we have trips planned, they are talked about beforehand so she knows what to expect. There is time beforehand to let out stresses, and downtime/quiet time afterwards to release anything built up. We got a small trampoline for our small back garden - where she can just bounce it off. She will retreat into the sitting room and curl up under a soft blanket in the cool and dim to unwind. She will drink rescue remedy (there are kids versions too) in water to help. We rub her back if she will accept touches, or her head, or give strong hugs (she doesn't like gentle touches for sensory reasons, but strong hugs help her feel more grounded, we think). We take her DS lite for her to use if she needs to retreat from things but still be physically there (like coffee shops with us when she's bored, or big family gatherings she can sit in a corner or go to a bedroom with a cousin to play together), she uses her iPod and earphones to enjoy music but also to block out too much external noise at times. I always have colouring sheets, and now sudoku and other puzzle sheets, in my handbag with colouring pencils, to distract her. And a stress ball to squeeze. She occasionally uses ear plugs if it is very noisy (she can now explain that some things are too noisy for her). We will have a "backup plan" for outings, in case we see things starting to wind her up so that we don't get as far as meltdown stages.
It has taken a lot of watching and learning to get this far. And we are not entirely managing yet (back to school brings an increase in stress levels for everyone every year still - I was raging by text to DH this morning after a dreadful night and morning with DD, as he is away this week and school starts tomorrow, when he had been supposed to be here this year for it (school is open 2 days earlier than we expected, but we had known that before he booked flights - after we had done the planning for the next 4 months, but before he actually booked it) - and as I am on antibiotics so can't even have a stiff G&T once she's in bed nor share that load or get a hug myself, he really got a venting stream of texts so actually rang from SA mid-morning).
But it is still a lot better than a couple of years ago. And it does sound like you are starting to see the trigger points, and manage things to reduce DS's stress and anxiety levels - which is a huge positive. And the fact that others don't see what you do, is definitely a positive (even if it doesn't feel that way now) as it shows that your DS is totally confident in you and feels supported enough to let it all out when he bottles it all (or nearly all) up everywhere else. Keep notes for the Paed etc, and it's good that the GP is listening now (I did find that she somewhat fobbed me off as well - but I brought DH with me the visit that we were going to ask very specifically for help, as well as having the backup that the creche had actually suggested assessment to us too at that stage). And it sounds like school seem to be understanding as well, which also helps - even if it's only implementing strategies, that is a huge positive - the words of a dx help, but putting in place strategies to help any individual DC cope with situations is the biggest thing.
Sorry, that wasn't meant to be so long. I hope you get the apts soon and that those who are supportive, keep on being that way.
I wrote a reply. Which didn't post
Anyway, we're now battling with our hv too. She rang and asked to come round Monday to discuss the letter. Said they'd already written to paed to pursue appt. meeting didn't really go further than dh and i feeling patronised and the hv asking why she was here when discussing dh's appt and conversation about ds with the gp (didn't appreciate the response from dh which was she'd asked to come round). I think they feel we've gone behind their backs by talking elsewhere. We feel like they're only too happy to try and drop us like a sack of hot coals. Especially when they put us in contact with a children's support worker and then asked why we were seeing them??? Oh, and if they were doing the same thing as hv the hv didn't have the time or money to duplicate resources.
They have however said they will go in and see James at preschool to observe him and make sure preschool weren't just leaving him to it. So progress and not. But at least they are aware we are like a dog with a bone and won't just let it drop.
Took ds to a party Saturday. Was one we had all been invited to so spent ages preparing ds that we were going, that there would be music, games and food. That he knew the birthday dc and sibling.
Got there and the first thing he did was found Thomas! Wasn't too bad playing initially but very quickly found the conservatory and spent much time in there clutching a train. Didn't join in any of the games, even though there were sweets on offer. Didn't eat more than a mouthful of sausage and two dinosaur biscuits. Thankfully he self-avoided the epic meltdowns by cuddling up to us or going to hide in the conservatory. My poor little boy. My heart breaks for him.
Can you cope with him at home for a bit?
Write to the paed and tell them you have withdrawn him from preschool pending support and you expect an appointment letter by the end if the week. Send a diary of behaviours plus some video.
I'm tempted to starlight. But I'll be honest ds going to preschool gives me time to do housework, which doesn't get done when he is home.
Especially as now there is a boy who appears to be targeting him - hitting and kicking, snatching toys and so on. This was the observation from our children's centre worker which she mentioned after I'd told her I had to speak to preschool when ds spent 1 day back at preschool and 2 days telling me about X who kept hitting and kicking him, then refused to go when he saw X was there the next time. Preschool said there was a bumped heads incident (I didn't get an accident report to sign) and then the next time that ds had been hitting and pushing X too. But acknowledged ds had been provoked. Since then all ds does is tell me that X hits and kicks him. Although I'm uncertain as to whether this is a continuation of behaviour or ds is simply referring to the first incidents. Having observed them myself, I feel X keeps trying to get in DS' personal space and ignores ds when told no, and ds tries to run away. But children's centre worker is going to tackle that for me.
HV nursery nurse came today. Ds had a spectacular tantrum over saying sorry (or not) for hitting. Took 2 hours before he was sufficiently coherent and then he still didn't want to say sorry. NN was shocked at his behaviour - throwing toys around, lashing out, screaming. Even wetting himself he was that worked up. But now she has seen that, she is going to chase up various appointments or actions which were going to be organised. Dh is furious as he says its like they've not believed us until they have actually seen it with their own eyes. And then its taken ds getting himself into an uncontrollable state for action to be taken.
I'm in shock. Earlier this week we had a second letter saying they didn't want to give us false hope, yadda, yadda so they wouldn't be seeing us anytime soon. But we would get an appt maybe when ds started school.
Yesterday we get an appointment for November. 2013.
It really helps when they kick off in front of professionals, Especially powerful combined with demonstrating a bit of uber-parenting, whilst simultaneously showing off your other 3 dc's perfect behaviour.
One tip. If you want to put this 'nursery could render diagnosis and input unnecessary' nonsense to bed quickly, find the most sensible, most knowledgable staff member they have, prepare her thoroughly
Insist she (ideally) comes with you and DH to see the paediatrician, or writes a very thorough and comprehensive letter covering a) all the areas of difficulty, b) all the routine good stuff they do and c) all the tricky/extra/different input which they give- none of which has cured him.
Oh that's a good idea. Especially as now ds has started hitting back. Ok so that may be my fault as I've given ds permission to defend himself. Ie if someone hits you, tell. If they do it again, hit back but only once. I had to sign 'the book' today to acknowledge ds had hit another child in the face with a train . I asked which child and the circumstances. They told me who but that he had just turned and hit the child unprovoked. Ds and I had a chat when we got home. Eventually he told me that the other child wouldn't leave him alone and he had told them to go away, he didn't want to play. This is typical at home behaviour we see. Especially when there are lots of people around and getting too close (intentionally or not) to him.
Anyway, meeting at school tomorrow to discuss everything that has happened with regards to their care over toileting and bullying. Will be interesting to see how it goes.
Your post struck such a chord with me, sokmonsta. I could have written it 2years ago (although no DTs -DC3 is a 'single' thank goodness).
Just wanted to say, if you feel there is an issue, then someone needs to take you seriously. You know your child best, and you sound like you're putting in lots of effort to get him to cope as well as he does.
Use that anger and frustration to make headway. Before diagnosis, the only times I got people to listen and act were when I was fuming and ready to rant for all I was worth (I am usually very non-confrontational and placid, and hate asking for help, especially in terms of parenting my children but there were times when life with DS1 took me to the brink!)
Many professionals told me I was comparing him to DD (beautifully behaved and very happy); was a bad parent who didn't know how to discipline DS; there was absolutely nothing wrong, etc, etc. I kept going back and eventually he was dx with AS a few months ago.
Luckily for me I have a very good friend who has a DC with ASD and she kept supporting me with advice and reassurance that I was not imagining it and that he really did need a dx.
Since having the dx things have really improved -we now have vocabulary to talk to others, my DD and DS2, and to him about why he behaves like he does and how we can deal with it. It means I am also able to 'give myself permission' to deal with him in the way that best supports him, rather than how others think I should.
If I can give you any benefit from my experience it would be:
- keep fighting for him. You know him best and you are his best advocate,
- never expect things to go smoothly on the path to dx. Hopefully you will get there soon and someone will be able to help him and you, but in the meantime, thinking appointments etc will move you forward will frequently lead to frustration and disappointment. Then when things actually do move in the right direction you will feel welcome relief!
-give yourself a break whenever you can. Life with children is hard. Life with a child like my DS (and it sounds like your DS too) is really hard, so be nice to yourself.
I really understand how hard it is and how frustrating it is when you know that the people who could help won't listen. For your sake, for the sake of your DS, and for the sake of your other DCs, keep going. It can get better (some days more than others!) but it can be a long road just to get over that hurdle.
Good luck and lots of unmumsnetty hugs!
Thank your for your kind words DAFTF.
Havung a lousy few days/nights. Have gladly and sadly sent ds to his nana and grandad's today for the night.
Paeds is Monday. Fingers crossed they listen.
Look at contact a family website for info on getting a social care assessment for a disabled child and you as a carer. You should be getting support eg via direct payments to buy in help. You apply to social services disabled childrens team.
look at Cerebra guide for filling out DLA forms.
Look into whether you can get portage (early years specialist nursery teachers) - they may only come to see pre school children who are not in a nursery. I know parents who have not sent their child to nursery so they can get portage. You should be able to self refer (council run service).
Look at council website the nursery should be able to access funding (often called inclusion funding) to pay for 1:1 support at nursery now without a diagnosis (based on need eg safety concerns).
Also self refer to the educational psychologist (details will be on council website)
what I did in your position when it was all going too slowly was apply for a statutory assessment (to get a statement of SEN). See IPSEA website for letter to start process. You only need to prove your child may need a statement (see SEN Code of Practice). Your request will probably be turned down as premature but a refusal carries a right of appeal to a tribunal. You appeal and the Council cannot defend the appeal without evidence from NHS, Educational Psychologist etc etc. So you get the assessments done quicker under threat of tribunal. If you are entitled to legal aid you can get private reports for any appeal.
The down side is the Council may be aggressive with you for jumping ahead, but thats because they like to gate keep resources. It sounds as though your child needs 100% 1:1 in nursery so I would apply for a statement now - it took us 20 months and 2 appeals to get through the process so although we were told off for applying before a diagnosis (ASD) I am glad we did not waste 6-12 months waiting for diagnosis and support to be in place and then still have a 20 month process on top.
Do you have homestart in your area? They can provide help at home.
Join the discussion
Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.Register now
Already registered with Mumsnet? Log in to leave your comment or alternatively, sign in with Facebook or Google.
Please login first.