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hi new and desperately seeking advice

(8 Posts)
cnncmummy Wed 07-Sep-11 01:18:55

hello

As the title says im new to the site and i really need advice and im hoping im posting this in the right place, im mum to four beautiful kids 8 6 2 and 1. My ds2 who is 6 was diagnosed last year as havong development delays at the time he was 54 months and was working at 42 months average though he was as low as 39 at some points. I have had problems with him since he was 6 months old and i do realise this pobably sunds silly but the night before he turned 6 months old he was a happy contented little boy he hardly cried except if he was ill and was always happy to interact with you or to have free time on the floor. When i got him up the next morning he was completely different he was a stessy baby and nothing you did calmed him or consoled him. I sought medical advice as i thought he may have been poorly but was assured he was healthy and fit and i was told he was probably having an off day. The off day turned into an off week then off month and so on.

As he got older his temperment became worse and by the point he was 18 months old i was dealing with a little boy who would flit from one activity to another tantrum at the slightest thing be very aggressive hitting me and his brother he became fussy in eating would take his nappy off and toilet where ever he was (ds1 was potty training at the time so it was assumed he was trying to copy) he was very hard to settle at night often sleepingfor a couple of hours and became obsessed wih things like pressing switches and thomas the tank. I started asking the hv for advice and have been sent on numerous parenting courses, asd was mentioned at one point but at the time (ds2 was 3) i was told he was too young to be diagnosed.

In 2009 after spending time with my parents a gp finally listened after me my mum and my sister turned up with ds2 to the appointment it sounds horrible but we sat back and just left ds2 to it for 10 mins to show the gp what he was like we then listed off all the behaviours and obssessions and basically begged for help.and after 14 months of assements and tests we recieved the development delay diagnosis. Adhd and behaviour problems was mentioned as a possibility and we were sent to the hospitals snhv. We had a couple of appointments and she decided his problems were to servere for her to help so referals were made to get help else were.

I finally receieved a letter last week from cahms and he has his first appointment at the end of october which is great but in the mean time its just me to deal with him. He's still very aggressive and confontational, he is still toileting in the house and not always in the toilet no matter how simple instructions are he just cant seem to follow them. he has all but destroyed my house to the point i'm embaressed when people call wallpapers hanging off he's drawn on the walls he's tried to set fire to things with matches i had hidden (i know carry things like that in my handbag at all times ) he's broke light fittings and switches countless dvd's toys and buggys. My settee has big holes in the cushions and the back has been ripped. He constantly winds ds1 up and pushes ds3 whos 1 over and dd who is 2 is now copying him.

We dont eat processed foods i cook everything from scratch crisps and sweets are a treat now and again i keep him away from red fruit juices as i was toldthis could help as would ignoring the small things he does like his high pitch scream and copying what you say and try and deal with the worst behaviours i have also been told that until theres an offical diagnosis theres not much help available ( ds2 had an appointment last week for a medical for a statement all this was mentioned the dr said his problems was apparent but he couldnt give me the proper diagnosis as he wasnt allowed). We are living day to day on total chaos theres just me and the kids and i was hoping if anyone had any advice on how best to deal with ds2 just until we can get a diagnosis as i am really at the end of my teather and i dont know what to do anymore. I love all my kids wth all my heart but im having trouble coping with him i'm sorry for the essay i just wanted to get as much in in the hope of getting advice and please excuse spelling mistakes but im sat here with tears streaming down my face as im at a loss at what to do.

Lookhere Wed 07-Sep-11 03:20:32

You poor thing. It does sound like very hard work. I'm sure there will be some good advice for you soon - but you'll probably have to wait til morning. Hang in there.

madwomanintheattic Wed 07-Sep-11 03:39:29

first things first - a dx isn't going to change the behaviour. at all. and you may or may not be offered support as a result of the dx, so it will be helpful if you can try and inform yourself as much as possible and try to implement some things that will help. waiting until you receive a dx is fine, but won't really help.

second - is it just you dealing with the 4 children, or is there a dp around to share the burden?

third - what do school say? how does he behave in that setting? have you met up with the senco and class teacher/ ht - do they have support in place for him? (you said he had a medical last week for a statement but where are you in the statementing process? have you or school applied?)

fourth - what dx are you expecting from camhs? you have a dx of developmental delay - are you expecting them to confirm adhd and some specific behavioural issues? or is the doctor veering more towards learning disabilities or spectrum disorders?

fifth - are you receiving any external support? home start can offer you a volunteer as you have children of the right age group and are struggling to cope (even if the child in question is older) - has anyone suggested applying for dla (notoriously difficult to get in this sort of case, but sometimes possible). are you in touch with any local sn support groups? there are usually parent groups for all sorts of things - if you have a sure start centre that's usually a good place to start.

nothing is going to change overnight, so you need to try and work out how you can get yourself into a stronger place. obviously there are meds etc that can be trialled to deal with certain issues like hyperactivitiy and distractedness, but they aren't always suitable and are not always effective. a dx will give you some clues as to what might help, but it isn't going to be straightforward, so you need to conserve your energy. lots of sn parents find that the constant battles wear them down and so take 'breaks' from trying to find solutions/ get support, to recharge. some find anti-depressants take the edge off the constant fighting and allow them to see a little more clearly. maybe it would be worth discussing with your own gp what he can suggest to give you a helping hand? (not necessarily meds - he may have inroads into support networks or counselling programmes)

the path to dx is pretty rough for lots of people. there are a few 'road to dx' threads running i think, so you might find a nice home on one of those alongside people who are having similar experiences.

you aren't alone, honestly. i'm sure someone will come along with some concrete ideas for the behaviours you describe (i'm only familiar with the use of a 'safe space' to prevent destruction and damage to people or property, but i'm not sure whether you are already utilising this idea where practical in the home.)

sorry, that's really rambly, but might help you set out exactly where you are and where you might be able to go next.

i'm assuming you are living in an area where you do not have access to multi-disciplinary assessment centre or developmental paediatrician? so cahms is the dx source? (it varies across the country)

and vent on here whenever you need. there's usually someone around. smile

lisad123 Wed 07-Sep-11 09:19:38

sounds like your pretty stress and understandably so. HAve you got much out side support?
What do school say?
As for the behaviours, those parenting courses are helpful for parent of NT children, but not SN kids. Is there a course local to you for SN parents?

As for behaviours at home, has he got a safe place? somewhere to go and let off steam if needed. As a parent I something just need 5 mins to myself to calm down and I can go to my room, please if possible provide him with somewhere and let him know thats where he can go, and no one will bug him. Make sure its physically safe and provide soft things to throw and punch.
Im not sure what a dx would give atm, if everyone is helping. Your SNHV should still be in touch.

magso Wed 07-Sep-11 10:03:22

Feel for you too. It took years my son to get his dx. Your son sounds very like mine at 6 ( not as delayed as my ds) so I can guess how dispirited and exhausted you feel. It is so hard to get support for children ( and parents) without a dx even though it should not be. It sounds like several disorders have been mentioned ( ADHD ASD learning difficulty) which must be very difficult for you. Parenting course can help IF they are specific to your needs as a parent - and without a working dx that can be hard. GDD is a general diagnosis (a 'we do not know why' dx!!) I found it helpful to read up on all of these ( plus a few others) - no doubt you have already and pick and choose what worked for ds. Try to work on one specific thing at a time. It can be overwhelming.
Prepare for your visit to camhs ( what you have written above is a good start) and be prepared to take another supportive adult with you.
In our area there was no multidiscinary team ( at the time) and ds had to see camhs who recommended a dx of asd but only the paed could Dx so it was back to the paed clinic ( another wait) to add that to his ADHD MLD dx. Frankly that visit to camhs was the beginning of getting more support for ds (he already had a statement and specialised school place because the ASD Dx was anticipated - long wait for camhs - long story ).

And finally look after yourself!! Hard i know. With a dx of GDD you may ( or may not) be able to get help from the disabled childrens team ( social services if you are comfortable with them). SS steped in when I got seriously ill - ds was 9 and had his long list of dxes by then - and now we get some respite care ( one night a month) and direct payments to help support ds afterschool once a week. Some areas run special needs holiday clubs which may be helpful ( again the disable childrens team should have details). So there may be help in the future.

cnncmummy Thu 08-Sep-11 02:09:27

Hi

Thank you all for your replies and im sorry for replying so late but we have had a really bad day today.

No there is no dp its just me and the kids i have a few friends who help by looking after the two younger dc's when i have appointments and one who takes my dd every so often. We dont live near my family theres too many issues with them and constant fighting within the family i thought it best to remove the dc's from all that when the older two were babies. my dc's dads or sperm donors as thats all they have amounted to althought thats never mentioned in front of dc's dont have any contact through their choice.

Ds's 1 and 2 dad has had contact on and off since we split he refused to have contact when we first started to go for assements as we were told to consider ds2 as sn and he doesnt want to admit he has a son who has sn.

I do understand that a diagnosis wont change the behaviours but i am hoping that more support will become available at the moment we have a social worker and ds2 goes to a respite center for days during the holidays. The social worker says she cant offer any more help til we have a diagnosis, she agrees there something more then the development delays. From what she has said until then they don't know what help and support to offer.

From my understanding from the dr and sw cahms will be able to diagnose ADHD and any other behaviour problems there are and help arrange support from there.

Were the dla is concerned it has been mentioned but i have so far refused to apply for it as we dont have an actual full diagnosis but not only that he doesnt have any physical disablities and the money should go to people who have them.

I'm not sure of any sn support groups as i wasnt sure what to look for due to not having a full diagnosis i'm a bit warey as i dont want to to take time away from people more deserving then us. I have researched the development delays and since last week i have been researching ADHD and there are a lot of boxes he does tick but i have read quiet a bit of conflicting advice i have found it a bit confusing . We do have stragegies in place we keep to a routine so he generally knows whats going to happen and i give him reminders ie tea will be in 10 mins then 5 mins so he's aware of whats going on. It doesnt always work out as there are appointments that disrupt the routine but i always start to prepare hm by explaingin and then reminding him from three days before. We have family rules set up on our fridge, they are kept simple ie we use nice hands feet and words .

If he feels the need to go and be on his own to calm down or he just wants to be on his own he goes to his room and no one can go in with out his permission the same rule applies for ds1. Aslong as weather permitting he has access to our garden when he needs to go be loud or just run round we have things like a trampoline swing slide and a seesaw plus other toys plus a stuppid amount for in doors as well as books and dvds colouring books and such.

We no longer have a snhv as she left the hospital and wasnt replaced different parts of the hospital are being shut down.

lisad123 Thu 08-Sep-11 08:13:01

you dont need a dx for dla at all, its done on need. We didnt have dx when we applied for dd2, and all of her dla goes towards her therapy, its been a god send

magso Thu 08-Sep-11 08:27:54

I am sorry you have had a difficult day.

DLA ( care element) is for all people and children who need significantly more care than others of the same age. This also means caring for children with developmental delays and conditions that mean they need substantially more time and effort to care for and keep them safe. I also thought it was only for children with physical and medical needs so did not apply till ds was nearly 9 so had his dxes and statement by then. Although it is harder to get DLA without a dx it is still worth applying - you will need to explain what you do extra to support him. There are many threads to help with this. Once ds got DLA it helped with all those extra expenses that go with a caring for an impulsive delayed child and keeping them safe! One of our first purchases was a waterproof duvet ( because of continance issues) and later a special cushion to help ds sit comfortably at school. Small things that made small differences so that parental energy could last longer!!

One of the things CAMHS asked me was what support I thought I needed. Whilst you may not be offered support it might be an idea to think about what would be helpful and see the appointments ( there may well be a series of them) as an opportunity to request for help ds2. I asked for behavioural support and continance help (oh and short breaks) all of which we eventually got with varying success. Some of this support was more along the lines of pointing me to local services or organisations ( some of which I had not realised were available for my son because I did not think of him as disabled enough to qualify - like Mencap holiday play club). IWe were then discharged with the referrals organised. What I mean is there there may be no support even if a Dx is given unless asked for.

It sounds like you are doing an excellent job!

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