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My on going battle can u relate to my situation?

donnzmail

Hi everyone im new here and this is my first thread,I want to share my story with u in the hope that someone out there can relate to my situation, sorry if this is a long thread i just need to get it all off my chest and get feedback so please reply.

 

My son has just turned 11 since he was born he has been hard work, first i thought it was his age and it would get better as he got older. the trouble first started when he was about 3 he flooded my bathroom by putting tissue in the sink and running the tap ( that could be an age thing ) then i would have neighbours knocking on my door saying he was smashing their garden ornaments hen he was 4 going on 5 ( we lived in ireland at this time in a little town where lots of children his age played out together it was very safe wouldnt dream of letting a 4 yr old play outside the garden in England.

 

He could never sit still people always looked at my as if to say control ur child , family members started to critisize my parenting because i found it hard to control him , my sister used to have a go at me cos he wouldnt answer her questions or say hello when she said hello to him calling him rude! and saying i should make him to which i would try, he hates social occassions birthdays etc but only when a fuss is made , we took him out for a meal one yr for his birthday with family and he sobbed cos he didnt want anyone to sing happy birthday to him and my sisters mother in law shouted at him for being mard i was not happy!! he is still like this now .

 

at about the age of 8 the would put the cord of the blinds in the living room around his neck and pull forward which scared the life out of me i had to knot them up so he couldnt reach them, he has got out of my bedroom window on the pourch and jumped again at the age of around 8 i was at the front door directly abouve the pourch when he did it so he landed in front of me , u could only imagine my reaction , never liked being told NO or being told what to do otherwise he would have really bad tantrums , i confiscated his playstation off him when he was 8 for being naughty and he ran into the kitchen got a knife out of the draw and threatened to kill himself, i think at this point it dawned on me something is wrong he would trash his bedroom in temper and throw things down the stairs not caring if he hit anyone .

 

I approached the school with all this and the DR asking for help to find out what i could do and why he was behaving like this , the school dissmised me and didnt really help us , the DR refered him to CAMHS but they said he didnt fit the criteria for an asssessment and told me to do a parenting course to which i did, it made no difference.

 

Things have not got better as he has got older im scared to disapline him cos of his temper and the battles we have , I have worn out different stratergies to disapline him that might work , although i have found that saying nothing when i can see his temper rising i tell him to go to his room to calm down and he does then we can talk about it .

 

Every thing seems to anoy him , small talk , facial expressions, situations , he seems to be sensitive to clothes he will only wear tracksuit bottoms and a t shirt even in the summer his yr i could not get him into a pair of shorts!, he copies saying from his fav cartoons ans uses a funny voice to say them randomly, he screams at the top of his voice if he gets excited , he makes random noises at home and in school , he taps on his chest all the time he does love the drums maybe thats the reason , he is very defient at home and my partner says he is obsessed with me if i go anywhere with out him i get lots of questions when il be home etc and he will time me he wakes up every night and if my partner is not staying he will get in my bed.

 

I finally got a refural to CAMHS theough the school nurse at his new school , after months of waiting i got an appointment and the out come was he didnt have ADHD like i thought but they did suspect ASD . CAMHS then discharged him from their services and we now only have a paediatrician who i will next see in 3 months and she doesnt want to rush the diagnosis and wants to avoid a lable , but now the school are saying about his behaviour in class saying he cant stay focused and he is distracted by the slightest thing like something on the floor he has to get out of his seat to get it , the other day the class were reading a book as a class and my son had his head on the table whilst reading and out of the blue stood up with his head still on the table and started walking around the table ,  his teacherf wants someone to observe him in class.

 

his teachers and myself have had lots of meetings and we r all on the same page with my son they also think he really needs to be assessed ASAP as he is in yr 6 now! but not enough is being done , in the mean time i have no support what so ever with my son and its hard to get support without a diagnosis , what do i do ???? sorry for the long post hope someone can identify with me

  • Yes, i will send info via Facebook. Unfortunately ASD is a disorder still not very well understood and its diagnoses still requiring allot of work, although it is improving!. Yes, many people may not meet the threshold and yet have traits which are very impairing. Further there and not enough services or budget to meet the need of these people. Get that referral again ASAP, in my experience the most efficient way is through the GP but otherwise the SENco should be able to do this again.  Ill give you more info via facebook and please don't be discouraged. 

  • Hi MicPUR,

    what a great thing to get a post from someone that has been on the inside.  I for one am very interested in your input.  I am sure you will agree there is a big discrepancy between what is discovered and worked on in the research field and about what the clinicians on the ground know/are informed of.  I think there needs to be a big drive to make it compulsory for all clinicians responsible for assessing and supporting ASC to stay up-to-date on research.  There are too many clinicians with outdated, stereotyped attitudes about autism, and still many CAMHS clinicians treating assessment like a tick-box exercise.  I've read a lot of stories of parents being let down by CAMHS and being told "autistic traits but not enough for a diagnosis" (clearly they don't understand it's a spectrum) or "s/he is coping at school and not being disruptive so you don't need a diagnosis" (being clueless about masking traits).

    Please do send me information via my Facebook page www.facebook.com/PlanetOughtism as it contains a plethora of autism information, including bits and pieces of research.  Your input would be very useful to me on a personal level at the moment too.

  • PS sorry for all spelling mistakes my keyboard is very old!!

  • Having worked with CAMHS, within the local goverement and independetly with many families, unfortunatley your story is similar to other parents.  Many parents have gone through your situation. I agree with INTENSE WORLD, you need to ask for assessmnet and continue fighting for it. This is your sons right, your right as a parent and any delays in doing so go agains reserach in the area of mental health.

    You wont be able to get a statement as he has no diagnosis. So i would recommend for you to get a diagosis done ASAP.   Having a diagnosis may be a scary thing however  once you know it is easier to get support.  I personally disagree with your GP and infact he/she should not be saying anything especially when all research suggest that early diagnosis and intervention is best for children and young people.  

    At least once your son is seen he will be able to access to more support: from parent training programmes, to finantial assitance, statemnets and educational support. The best way is to speak to GP, say you would like an assesment ASAP. Depending on the area you live, this may mean there is a waiting lists. Dont be discouraged. Just make sure a referal has been made and if it has not been done within 1 week call your GP again.Tell your GP, it is your right to get a referal and look at NICE guideline to see why thid is your right.  

    I am a professional and researcher in the area of ASD and happy to send any information. I personally have had simmilar problems with Adult mental health, with a referal for my gradfather who had demencia. I had to perosnally go to the social worker and refused to leave until a referal was done.

    Dont be discourage, your son sound likle a lovley lad!!!!! and there is much room for improvement and many intervention programms that do wonders with young people. Put on a fight! If you would like more info let me know :)

  • Oooh just wrote a huge reply and lost it all!! A bit of advice don't use the emoticon faces! Shortened version of my original reply: 

    Don't give up get educational psychologist involved your sons school can request this if they try and fob you off contact them directly through the council. Also contact your local mp - I did this and it was amazing how quickly things started to move! 

    It will be a long journey but you sound like a wonderfully supportive mum and that will be what keeps you going.

    good luck with everything xx

  • I just dont get it! why is there such lack in this area as regards to help and support?

    the government need to pull their finger out and fund these areas on the NHS instead of making cuts! this is real families that they r neglecting! it makes me so mad looks like i have a long tough road ahead getting a diagnosis x

  • Thanks for u reply although I have a diagnosis the battle is only just beginning with the eduction authority and senco iv spent many a day at the learning centre trying to get some straight ansews bbe and never seem to get anywhere my son gets the knife more than once in frustration I feel like im fighting a loosing battle hopefully things will get better for me and u as well bbe

  • Hi devilnum2 thanks for ur reply , thank god my son has only used the knife senario once and hopefully wont ever do it again i was so scared , since that incident i have not disaplined him the same cos it frightened me so much i never want him to get that wound up again has ur son done it more than once? if so my heart goes out to u x , i have also had lots of people blame me as a parent for his behaviour and it makes u feel like a failure as a mum its heart breaking i truely hope ur son gets the proper help he needs soon and hope u get the support u need to cos its very hard on us to when the needs of our children are being ignored , im disgusted in the NHS and the lack of help and support there is out there for children and parents and the length of time they have to wait! xx

     

  • Hi my son is 9 and has very recently been diagnosed with asd I had no sopport from his primary school they just kept telling me he was naughty I battled with them for 2 years unfortunately in the end my son attaked several staff members and got permently excluded he is at the moment at a learning centre awaiting a special needs assessment like ur son he gets upset cries gets knives out threatens suicide tries to hurt himself he bites himself and gets angry at the slightest things so I fully sympathise with ur situation iv had the look people saying I'm a bad parent but now I no why he behaves in this way it helps u to no why I'm still in a battle to get him to a new school and get the help he needs 

  • I will hun thanks xxxx

     

  • I am just grateful I can be of help.  I know what I've been through and I have a huge sense of injustice, so I want to do what I can to try to prevent others going through what I've been through.

    Keep us posted how it all goes.Cool

  • thanks hun its been lovely talking to u xxxx

     

  • ADHD has genetic links to ASD so it's understandable that the cross-over of some traits made you think ADHD initially.

    The mother's input into whether a child has ASD has actually been found to be more relevant than the father's, due to things like the womb environment.

    When you have sorted out your son's assessment, I think it would be a really good idea to get yourself assessed for Asperger's.

    I have some information on my FB page about females on the spectrum (scroll down):

    www.facebook.com/PlanetOughtism

    Good luck (and stand your ground, when it comes to both your son and yourself).

  • Thank u so much for talking to me about this i have felt so alone for so long and no one else really understands me or my son , i felt like i was different to and when i first started researching ADHD for my son i found many of the traits in myself and went for an assessment the DR was not very nice and he said i had no symptoms i paid for a private assessment for learning disabilities cos i have always found it hard to understad and process info and i was doing a degree and really struggling the out come was that i had specific learning disabilitiies but i think i have sensory issues to like noises can make me angry and so can certain materials like man made fibres and touch and social situations make me uncofortable and not being able to sleep and waking up at night but for food sometimes, and i have little outbursts of anger and im very inpatient x

  • Don't worry that you are babying him.  As long as you are explaining to him along the way why things are e.g. dangerous, done a certain way, or whatever and trying to support him to tackle things rather than doing things for him then you aren't babying him.  He needs to know you understand him and support him wholeheartedly and you are the one person he can rely on in the midst of a confusing and scary world.  You can be gentle while still maintaining discipline, and often with autistic people they don't react the same way to traditional discipline as they don't have typical perceptions so you have to find the way that works for your individual child.  Follow your mother's instinct.

    BTW, I have Asperger's myself, so I'm coming at this from the perspective of both parent and Aspie.

  • Im ready for the long battle ahead but at the same time emotionally exhausted, my son has amazing talents which i praise him on all the time like playing the drums he is amazing and never had a lesson its also great for him to challenge his frustration sometimes if he is in a bad mood he takes it out on the drums but in a gifted way!! i love listening to him , he was also a gymnast a fantastic one at that but he left after 2 yrs of intense training because the coaches were to stricked he wants to free run he loves freedom , me and him play golf when the weather is nice cos it relaxes us both and he is fantastic at that to lol , when he sees his grandad a few times a year they play pool and my dad is very competative even with kids lol he doesnt like losing but my son has beat him a few times which says something cos my dad is good!

     

    Im very loving with my son and very understanding towards his feelings some might say i baby him and im too soft with him and im not doing him any favors but i feel like im all his got who truely understands him and i think he needs the gentleness of his mother to compensate for the lack of understanding from everyone else, am i wrong for being like this with him i just find it very hard to be tough on him. xx

     

  • No problem at all.

    I am so sick of people being let-down by CAMHS, GP's, paediatricians, schools etc.

    At least the school are agreeing with you which will go a long way, as their input will be sought by whoever assesses your son for autism.

    Yes, the negative thinking and depression is awful.  Both my girls are on the spectrum and they are both now saying things like that.

    Your son sounds a very special and adorable little boy, I'm sure you tell him how lovely he is, which is important when the world around seems to want to kick him in the teeth.

    Tell him about his talents and skills, everyone has deficits as well as talents, it's just that the balance of his is more extreme, it's known as the "spiky profile".

    You sound like a great mum, don't let it get you down but be prepared to have to fight for everything your son needs, as that is the only way parents get what they should be given anyway.

  • Thank  so much first of all for ur reply i was just reading one of ur replies to someone else and seen that ur child to has said about they should be dead my son started writting little notes about how he is a freak and deserves to be bullied and should be dead and its heart breaking to see this and toi see ur child in so much pain , I am so over protective of my son and have a very close bond with him and will do what ever it takes to help him he is my world, i just find myself constantly angry with the world and frustrated because of the way people percieve my child and the lack of help for other families in this situation and there seems to be an awful lot! on the other hand my son is the most loving , thoughtfull , kind and caring child i have ever met and wont let me carry a shopping bag if he is around and tells me when im old he will look after me and take me to lunch and buy me a new car lol he is adorable.

     

    Thank u intense world for ur advice its so nice to be listened to and taken seriously u really have made my day thanks :) xxx

  • OK, you have been fobbed off.

    CAMHS should never have discharged you if they suspected ASC.  He does sound very much like he is on the autistic spectrum.

    Go to your GP and tell him/her a summary of what you said here.  Insist on a referral specifically for ASC assessment, they cannot fob you off with "lack of funding" or "no local ASC assessment service" as they have to send you out of area if that is the case.

    Do not let any doctor, paediatrician, professional of any kind, fob you off with saying they don't like to label.  That label is what gives your son legally recognised disability that brings support and opens a lot of doors to entitlements.  Make it clear that you are not interested in the professional's opinion on labelling, he is your child and you are going to make sure he gets what he needs.  Tell them you are aware of NHS NICE Guidelines and your rights and that you will complain if they do not correctly diaqnose him.

    You can complain to NHS PALS about unhappiness with treatment of your son.  You are also entitled to request a second opinion if you do get a failed diagnosis.

    You can also apply for a statement of SEN yourself via your local council's SEN team and your son does not need to have a diagnosis to get a statement.  So don't let that hold you back.  A statement does take about 6 months.  You will find this website useful:

    www.ipsea.org.uk

    Contact your local Parent Partnership organisation as they can also help with school-related stuff and attend meetings with you with the council if you need to have them.