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hollyh31

Hi All

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Hi Everyone,

I will start by introducing myself and say a little bit (if I can condense it) about me and my family.

I am Julie, I am a mum to 5 boys, Bradley - 13, Kieran - 11, Elliott - 7, Ollie - 6 and Jaeden - 17 months, I live with my partner and our boys in Cheshire where I work part time as a care assistant, my partner also has 2 sons who live with there mum.

I wish I had found this website and forum years ago. Bradley has Tourettes and ADHD and Elliott is a medical mystery so I'm told but after reading some of the threads I finally don't feel alone and like I'm going mad.

Elliott was born at 35 weeks + 1 day, by emergency section, his apgar score was 2 and took 20 mins to reach the full 10 during which time he was ventilated, I first noticed some delay when he wasnt sitting up or rolling over at 9 months but put it down to him being lazy, by the time he was 13 months and still couldnt do anything, health professionals started to get involved, he had physio, was seeing consultants weekly and we got told we were looking at a syndrome but they didn't know what kind of syndrome.

Anyway as time progressed so did Elliott, he eventually started walking and talking when he was nearly 3, he had portage, speech therapy, a behaviour therapist as he had lots of phobias and didnt sleep well.

Eventually as nobody could quite pinpoint Elliotts problems he started mainstream school, which I got told was the right thing to do.

Now at the age of 7, Elliott has so many quirky behaviours, CAMHS havent got a clue, they have suggested testing for ASD due to some of his behaviours which baffle us but we accept it's just Elliotts way.

I just wondered if anybody recognises any of these behaviours and I'm not looking for a diagnosis, just maybe for some help with dealing with them as we find them really challenging.

Really obsessive behaviour, taking every thing literally, violent outbursts including swearing at myself, my partner and his younger brother Ollie, he takes his underpants off after every toilet visit and they go missing, is like a little magpie, he is very clever at school and gets all top grades but I feel he absorbs it like a sponge as he recites what he has been told than how he understands it, he makes up stories, he has no sense of danger and would completely trust anybody who spoke to him by name, he can kind of do eye contact but looks through you rather than at you if that makes any sense, these are just some of his behaviours.

I don't have much faith in the consultant he is under, as she sent me to see the physio 'to shut me up' when I said his right leg looked smaller than his left and the physio confirmed that his right leg was about 2 cm shorter than his left leg.

Also CAHMS let Bradley down and he got labelled as a naughty boy all through primary school and it was put down that he behaved the way he did because I didnt have enough boundaries until he developed the twitches and then the high school noticed a pattern to his behaviour and he got diagnosed so I feel really let down by all concerned with my sons.

Sorry to have gone on and I hope that I havent bored you all too much and if anybody has any words of wisdom, They would be gratefully received.

Thanks for listening and pleased to be a part of your community xx

 

 

 

 

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Hiya Holly,

 

A very warm welcome to the forum, certainly sounds like you have your hands full.

 

I hope you find the forum as wonder and as help as I have done.

 

Clare :)

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the signs you have listed here really obsessive behaviours,violent outbursts taking pants off,taking everything literal ,looking through rather than at you being clever and bright ,would trust anyone when called by name ,reciting like a sponge,no sense of danger i could tell you is AS - Asperger's Syndrome! everything is complete with what you told me! does he find socialising hard? get anxious upset? because his older brother has ADHD and TS it can be very likely that his sibling has another spectrum disorder!it all pointing all at AS though maybe getting him assessed by NAS as CAMHS isn't the greatest for most children and families out there the service and system so poor quality and i feel let down by them too alot parents do! lots phobias and not sleep well as well match AS too! i have AS as well having speech language and communication probs and having to have SLTherapy have you though of CBT and maybe anger /behaviour management and maybe you and him going along to local support group to get practical advice and tips for both sons!

 

maybe talking to NAS about personal situation of family life and experiences you been through that you feel let down! but need help and support in place! you tried family counselling? or anger contract between you two and him and if he doesn't swear or get angry reward behaviour with treat he wants and choses! put pics on wall to explain how cool down when gets angry what to do an area which he can go where won't hurt himself or others!

 

egs smaller than other heard somewhere that can be AS too! what about distraction so when feel anger agression building to have punch bag take his anger out on or write down thoughts feelings or watch tv listen music something help release anger in safe secure environment?!

 

i was like your son very angry ,agressive i believe personally built up frustration ,confusion what you think? i had violent outbursts with parents i have AS dyspraxia,depression anxiety,panic attacks animal phobia esp cats and dogs when barking loud noises set me off what bout your son does he cover ears when hears loud noises? how he cope with change of routine?

 

does both sons have mental health probs like depression,anxiety?

 

i learn't to control my anger with doing it my own hard work effort and terms can be done over small steps give time! i keep record of anger/agression how often what main triggers as normally something that can make set off? sensory overload issues? in autistic terms known as meltdown! i'd read up in books of parents with an AS child and ADHD/TS too and see whether get tips and advice from them! and look through the net too! i keep daily diary on both of them on moods ,behaviour changes etc? does your son with AS get much help and support at school? LSA? or 1:1 sessions broken down for him on his level? does ADHD,TS get help and support at school? does he go CAMHS? once get official diagnosis for son with AS then get IEP in place at school have regular meetings arranged at school (reviews) to check progress made and stuff needs to work to improve!

 

does your son with TS and ADHD take meds? does he get depressed,frustrated,angry,agressive?

maybe need Meds to help control anger,agressive violent outbursts? anti pyschotics or anti depressants?

 

anyways hope this information helped you

i would ring up NAS and ask for where to next steps to make with both of them as sounds like need more than CAMHS support and help really! how both social worker? or respite care? i would also look on NAS webiste as lots of really useful and helpful advice and information on there? and AS signs! have a look can't hurt hey!

 

i can relate ti what you say about your son i've been there i know how hard and difficult can be but i now in further mainstream education struggled but done it and getting high grades in my aissgnment work!

 

take care

good luck with your sons

sorry taken so long!-bet luck this time with official diagnosis and help!-fingers crossed!

 

XKLX

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what youe said there makes sense to me sorry there alot to take in! but always in when get into spectrum disorders the in and outs of it all signs ,behaviours! when not sitting or rolling when baby that what parents first early sign they see just maybe don't recognise as maybe autism as not enough awareness and understanding of the spectrum disorders! so that why parents don't think nothing too much if slighty behind and developmentally delayed abit! my parents just the same as what you're saying! autistic babies don't develop at normal rate normally slower than others their age! and this follows through in each age stage what is expected in 'normal' baby! health visitors don't pick up on autism i think do alot more now but still very weak in that area of spotting what it is diagnosis and treatment by support and help the family missed out alot very common mistake made along way all do with systems and services!

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Hi and thanks for the warm reception...

 

Thanks for the insight Smiley, in reply to your questions.

Elliott seems to fit in well at mainstream school, he has just had his SATS and got top levels in all of them, he is wary of new social events, he mixs ok with others but tends to prefer his own company, he has no extra help at school and the only difficulties the school have with him is his fixations on things and how he clings to objects that most people would disregard. Although he did stand up and threaten to shoot his class.

We have started to keep a diary of Elliotts behaviours and how often they are occurring now in a desperate bid to get some help and eventually a diagnosis. He had 12 sessions of play therapy at CAMHS but that was all they were able to offer as well as putting a referral in to get him tested for ASD, we have contacted social services to see if they can maybe provide some respite but havent heard anything back from them as he can be really destructive (has put holes in his bedroom walls,breaks all his toys and more recently his pc, he also urinates everywhere) and as I said earlier he is quite abusive both verbally and physically towards us all.

Bradley, my son with TS and ADHD is still waiting to get his medication as there is a 4 month waiting list in our area but he will be medicated for the ADHD initially but we are taking a risk as it could make his TS worse but if we can get his behaviour under control particularly at school, which is where he struggles the most, he acts the class clown in a bid to detract attention from the fact he cant concentrate or focus on the task in front of him.

Thanks again for the information you gave us Smiley, I will have a look on the NAS website and take it from there. I am glad that you are doing well in your studies and hope you continue to do so

 

Julie xx

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hi Julie,

I really feel for you there, I have 4 boys myself and that in itself can be hard work! My middle 2 are the ones with the "problems" Kyle 14 had ADHD and autistic tendencies which took 8 years to dx, Connor 11 has ADHD,ASD and dyspraxia which took 4 years so i completly know where you are coming from i was too told it was because they were naughty weve done play therapy etc so I know how fustrated you must be feeling.

 

Emma :thumbs:

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i was labelled as naughty at school cause it misunderstood and judged alot as i think many children are on the spectrum! i would ring up social services are ask what happening as urinating everywhere isn't normal behaviour! sounds like he may have MH probs do you think he understands why he does them things? sounds like he very angry and agressive little boy when say likes his own company that AS on NAS website have names of books information on it so well worth a browse for both your boys! you need when told on meds for ADHD mention that you don't want them to affect TS! i make that bold and clear as plenty they can try ritalin the common med for it or concerta! so look up side effects on net or ask when ring NAS up!i know waiting lists are annoying i'd ask for emergency appointment for meds and social services say gettign worse behaviour,abuse say you need help and support now and take down with you proof of this through diares made! say you CANT do this ALONE ANYMORE! affecting the family! and maybe wehn go CAMHS for play therapy mention your other son or is he waitim for CAMHS too? he need play therapy as well as meds?

 

good luck with NAS!

take care

XmeX

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you got normally be nuisance and bother CAMHS to see whether you are on the support list so keep checking there every move! that's the only way to be to get somewhere with service and professionals at CAMHS! keep us updated though!XXX

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Hi Emma,

I know what you mean by the waiting being frustrating, I feel like it's me they are looking at and not my boys, which seems silly but you have to justify your every action to them and as Elliott likes to make up stories such as I threw him against the wall, a man broke into our car and threatened to kill my youngest son when Elliott had infact trashed the car himself.

You have given me a glimmer of hope, we have had health 'professionals' involved with Elliott since he was 14 months old and still seem a mile away from getting a diagnosis but perserverance seems to pay off so will continue with my crusade to find out what is going on in his little head.

Thanks x

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Hi Smiley,

 

Elliott isn't under CAMHS anymore as they don't feel that they can do anything else for him, 12 sessions of play therapy changed nothing infact he seemed to get worse if anything.

But I will admit to ringing them when he had a major kickoff crying my eyes out and asking them what they are going to do to help me, I was promised a phone call back on the friday but this never happened, They have referred him back to the community paed so will have to see where he goes from there but if I don't get the answers I want and he deserves I am going to be requesting a second opinion as I have no faith at all in the doctor we have got to see but will take it on the chin - FOR NOW lol

 

Julie

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