My son

[bb1976]

This is my son if any one has any ideas please help me x

 

As a baby Michael woke3 to 4 times every night and continued this until he was 4 yrs old. As he got to 9 months old and the ‘need to entertain’ stage, he was very hard to amuse and got upset allot. He only tolerated being held to be moved as he did not like being nursed.

As he developed he was a solitary child who insisted on his personal space and had to be asked before being cuddled or kissed as he would get very distressed if this was done spontaneously and he wasn’t expecting it. This ‘personal space’ also applied to talking to people. For the most part he didn’t do eye contact and if anyone tried to talk to him he would turn his head away and totally ignore their presence and anything they said. This was in his home and outside. We adapted to his way of doing social contact so that it was still possible and slowly, over time, he has become tolerant of affection by close relatives although, with the exception of Beth, it is neither volunteered nor reciprocated.

When he was first able to sit up on his knees and balance he started bouncing against the back of the chair (he continues to this day and has given himself a sports injury).This is accompanied by what his Nan calls his war dance song. It sounds like the American Indian chants- a series of unrelated hums, timed to his bouncing.

When he became mobile he started digging loose plaster out of the wall and eating it because ‘I like how it crunches in my head’. In spite of being told it would make his tummy sore, as soon as our backs were turned he was at it again. She did manage to stop the plaster eating. It was around this time that he started eating sponges because ‘they are squishy in my mouth’, and again it was something it was impossible to stop him doing as he stole them and hid with them, no matter whose house he was in. Eventually Beth started buying him baby sponges as they were guaranteed to have no chemicals in them (Beth was told this was fine as long as he didn’t swallow them by Dr B. and just hoped he’d grow out of it. Then scrungies came out and so Beth was able to stop buying sponges of any description because ‘they didn’t sell them anymore’ and got round it that way. She had already told him that washing up sponges had germs in and, at 7, he understood that.

He started developing obsessions. His first was toy cars at a very young age. They all had to be different. By the time he started school he had approaching 500. He knew if Beth got him one he already had (this was the first time he gave Beth a black eye by throwing at her because it was one he already had. He got really stressed out at things not being right) and also knew when one was missing, what colour it was etc. and there was no peace until it was found. The next fixation was running concurrent to this one and then beyond. Real cars, parked on the street. Beth started him noticing the colours to help him learn his colours but he took it to the nth degree because he needed to know all the makes (she had to learn them) and when that stopped being enough he wanted to learn the specs then how an engine worked- he soaked it all up and went on at great length (to anyone who was unfortunate enough to stand still long enough) about them. One of his problems was that he was convinced that there was only one way to get to a place or back home again and became hysterical if we tried to take him a different way. Beth used the cars to change his ideas by pointing to another street and telling him that there were better cars on that street so that he focused on that rather than the change of direction. It is quite possible that the ‘being dead’ is another obsession that is filling his head, equally as intense as the cars but allot more dangerous. He still doesn’t tolerate change. Every time he was left at playgroup he got seriously upset. Then he got sort of settled then he had to move to infants-stressed out again -and Beth was on the receiving end of all this-then moved to juniors. By then he’d realised that after the summer holidays you had to have a new classroom and teacher so the stress started about 3 weeks in. Now, leading up to the summer holidays Michael was getting upset because he knew he was changing schools. He got upset on a visit to his new school and had to be taken somewhere quiet until he calmed down.

Another normal thing that shows his obsessive tendencies was potty training. He managed to become trained during playgroup (they helped with this) and Beth had a potty at home which Michael would use only where no-one could see him (this also applied to dressing and undressing). He became dry at night after he graduated from the potty to the toilet but insisted that he kept pull ups on JUST IN CASE because he couldn’t bear the thought of being wet. He also insisted that Beth went with him however many times he got up in the night. As this was up to half a dozen times she got soo tired she ended up sleeping in his room because it was easier.

All the way through this he insisted on being with no-one but his mam. He got tired very easily and was still using a buggy to go to playgroup. He was (and is) suffering from a condition called pica. This led to not only the plaster and sponge eating, but Beth having trouble with him eating. If it didn’t feel right in his mouth he wouldn’t eat it. He was also reluctant to try anything different, which became outright refusal. He would only eat lemon curd butties, microwave chips, toast, whatsits, skips, quavers, certain flavoured yoghurts with no bits in, dry buns, fairy cakes, and milk from a bottle and not a great amount of any of them. Beth put vitamin drops in his bottles at the suggestion of the health visitor. He didn’t stop having a bottle until just before the junior school when he graduated to a cup and straw. Mrs W, a special needs helper at the juniors, was a great help with broadening his diet as she did baking with him and Beth and then him alone. They also did taste testing in the class and he got allot of support and encouragement when he put anything new in his mouth. His diet is still very limited and he can taste the vitamins so he won’t have them or any of the different ones on the market for children. He still eats dry bread and microwave chips, also uncut loaf, squeezy strawberry yoghurts, tub monster munch strawberry yoghurts, pears, apples, bananas (have to be perfect with no marks even on the skin), grapes, melon, oranges and pineapple, his version of a McDonalds is a dry toasted bun, a few of the fries, the drink and the toy because he won’t eat any meat because it has been an animal, pizza crust with no topping, spaghetti from spaghetti Bolognese with some juice on but none of the bits-he did try it but didn’t like it, sausage roll with the meat removed, croissants (only the diamond shaped ones, not the curly), pancakes, weetoes, frosties, ricicles, weetabix, toast(without jams has crusts, with jam crusts removed and has to be a specific colour of toasting), butties and beans, beans on toast where he says where the beans go on the toast or he won’t eat it and because mum always gets it wrong. He will try things mum gets for herself but doesn’t like them. These sounds allot but the average day’s menu is:

Breakfast -Glass of milk, sometimes cereal

Dinner -Dry cracker, packet of crisps, freddo bar, squeezy yoghurt and a drink

Tea -2 slices bread as butties, or chips, once a week McDonalds, or toast etc in small amounts.

Supper –sometimes take bread or something to bed with a drink.

He nibbles at the fruit at home if he fancies as it’s always available.

There was (and still is) trouble with his clothes. If it doesn’t feel right on his skin he won’t wear it. Now, if an item is washed a few times before he tries it Beth can sometimes get away with it, but if it is tried first and not right, no amount of washing will help.

From he was about 12/14 months old Michael has attacked Beth when frustrated. This included hitting, punching, biting, kicking and throwing anything he could lay hands on at her. She was very upset at this because it was over everything including being picked up, dressed, nappy changes. He was quietest when just left alone with his bouncing. When he got to the ‘terrible two’s’ this increased in ferocity and she couldn’t do anything with him. This made her feel like she was doing something wrong because other people’s children weren’t like this. She had to stop taking him shopping because the lights, noise and too many people had always upset him and made shopping hard but it became impossible and she had to get a babysitter so she could shop for the weekly supplies. This is still the case now.

When he was about 2 she had approached the health visitor, Alison, to see if she had any suggestions of how to stop him attacking her and to help with his feeding problems. She looked into the situation and had regular meetings with Beth. Each few days he presented with another thing that had to be done a certain way and battered and bit her to the extent that she couldn’t stand anymore and Alison arranged respite care for her for 1 hour a week. This would have helped but Michael wouldn’t go anywhere with them and, after a few tries, Beth gave it up because their time could be used elsewhere with children that would enjoy it.

When he was about 4, because of all these traits mentioned above, his aunty Sue and his Nanna approached Beth suggesting that these seemed to be autistic traits and that perhaps a visit to the doctor was in order. Beth decided to leave it for a while and see how he did but, after a particularly bad time with him she went and saw the doctor who referred her to Dr. B at ____ General. Michaels Nan went to play cars with him while Beth explained everything and Michael was put before the board to be assessed for autism. They left it as undetermined because he had the traits but there were a couple of things that weren’t autistic so they wouldn’t commit. Beth carried on seeing Dr B. at regular intervals until, at seven; he became very depressed because he was recognising he wasn’t the same as his peers. He was having allot of arguments at school because he couldn’t get time alone and was alienating friends by screaming at them to leave him alone in the playground. He explained that if he made them fall out with him they would leave him alone. It was around this time that he first started mentioning the voice in his head. He said it was putting him down; telling him he was useless and worthless and he should be dead. The other thing it did was give him things to say when he was arguing with people .Beth and Nan tried to explain that when you think it sounds like someone talking in your head but he disagreed saying that the voice didn’t sound the same as his did. One day, after losing it with Brandon he hit him so hard on his head with a playstation pad that he gave him concussion. He was off school next day and when he went back his mam, Julie, told them what had happened. He has violently attacked Brandon on a few occasions including trying to stab him with a screwdriver for very minor things but that Michael reacts to. This had really upset Michael as he calmed down and was made aware of the wrongness and seriousness of his actions. When Beth was talking to Julie at the front door Michael disappeared upstairs to calm down as Beth thought. So she decided to go and make a brew. She found Michael on his knees, sobbing, with a knife to his throat. He’d decided that the injury to Brandon proved he was evil and that he had to die. This was the first time. Beth told Dr B who said that it was outside her area of expertise and referred them to CAMHS. There have been other occasions since then and even as a matter of general conversation Michael explains that he doesn’t belong on this earth and that he should be dead because he doesn’t fit in. He had a friend, Daniel, who was sleeping over and witnessed Michael have a ‘rage’ and it frightened him that much he fell out with him and won’t come back. This really upset Michael, who can’t understand why, when he’s alright now, Daniel won’t come back. On top of that Daniel has started calling him names like ‘schitz’ and ‘stresshead’ and ‘freak’ at school which is upsetting and angering Michael.

The rest you know.

All of these things have been going on since Michael was too little to be influenced and too young to be told anything.

All these problems are Michael’s own and the only difference is that he is older, stronger, now scares himself because he might really hurt someone, is going to find it allot harder when puberty kicks in properly, and needs proper help and coping strategies in place so that he can control himself better.

He has told me that other m is getting stronger and when he takes over I won’t have the nice one anymore. Having read up on aspersers it usually comes hand in hand with something else. We have 2 autistic children in our family, and his father was diagnosed schizophrenic. His uncle bi-polour and his granddad spent most of his life in and out of mental institutions. But Camhs say this is irrelevant I have no idea how to bypass the useless people to get my son the help he obviously needs?

Edited October 16, 2011 by Kathryn
To remove personal information.

[smiley1590]

noise,light situation as with only eating certain foods and clothes sensitivity is sensory issues common in ASD sounds like could be high possibility of ASD there as lot of classic main signs e.g lack of eye contact solitary child the voices in his head i have personally experienced myself and is scary frightening when my MH issues was playing up has CAMHS assessed for ASD at all?

 

i put a knife to my own throat and said wanted to die as don't belong fit in anywhere so can empathise with your son and as there is 2 ASD children already in the family i would say needs investigating further looking into and researching has bi-polar and schizophrenia also been looked as he could have ASD and MH probs such as bipolar etc? depression? also common in ASD is obsessions with certain objects,thoughts etc have CAMHS not done action plan of what happen next where u go from here? as in support/help?

 

XKLX

[Kathryn]

Hi bb1976

 

I've edited this post to remove the personal information, which could easily identify you, such as your son's name and date of birth, and the names and location of professionals you've been involved with. First names and initials are generally OK to use.

 

I don't know why Camhs have responded in this way. Have you told them all the information you've given us here about how increasingly stressed your son is?

 

K x

[bb1976]

noise,light situation as with only eating certain foods and clothes sensitivity is sensory issues common in ASD sounds like could be high possibility of ASD there as lot of classic main signs e.g lack of eye contact solitary child the voices in his head i have personally experienced myself and is scary frightening when my MH issues was playing up has CAMHS assessed for ASD at all?

 

i put a knife to my own throat and said wanted to die as don't belong fit in anywhere so can empathise with your son and as there is 2 ASD children already in the family i would say needs investigating further looking into and researching has bi-polar and schizophrenia also been looked as he could have ASD and MH probs such as bipolar etc? depression? also common in ASD is obsessions with certain objects,thoughts etc have CAMHS not done action plan of what happen next where u go from here? as in support/help?

 

XKLX

 

CAMHS have gone to social services accusing me of having muchousens biproxy strangely enough that happened after i put a complaint in about them then i was told on a one to one that if i dont do as they say they have power and influence to MAKE me do what they want, again they went to social services and have managed to get my son on to the at risk register to tie my hands on getting a independent diagnosis?? i am at my wits end they have been sneaky and underhanded at every turn and have stopped all attempts made by me to find help for him myself. they said the genetic side is hear say and are not interested in any of it. so now i am looking on here for things that will help me and my son get him assessed by someone who specialises in his area of expertise. its horriffic that they say i am to blame i have all my family and friends back me up to say i am a calm and sane person they have no proof and have never had me assessed either so i can proove myself. Its sooo nice of you to tell me about what you went through i hope things have improved for you? Michael is now just about to hit the hormoans so im petrified things will escilate and he wont have the support he needs to cope through it? i welcome any help and advise tyou can give me Many thanks for your reply xx

[bb1976]

Hi bb1976

 

I've edited this post to remove the personal information, which could easily identify you, such as your son's name and date of birth, and the names and location of professionals you've been involved with. First names and initials are generally OK to use.

 

I don't know why Camhs have responded in this way. Have you told them all the information you've given us here about how increasingly stressed your son is?

 

K x

 

Thankyou, yes i took this to them with my mum (who they say is an unhelpful influence because she supports me as are my sister and my best friend.) they say its all hear say and they dont listen to that!! I find them highly annoying and disrespectful and full of there own importance, to quick to judge and only do half a job, they took back ground information off me about child hood sexual abuse then used it against me. i have been told i have over loved, protected, cared for my son and this is y he is its utter rubish. he needs an independent assessment b4 the teenage hormoans add to his allready difficult stages of his life all he has in me and my family and we r basically muddling through best we can to avoid him hurting himself again? do you have any other ideas? xx i have a complain going through about camhs since that they are now trying to say i have muchousens biproxy to cover there failure of michael. i have an advocate doing this with me i also have an advocate for helping me fight who is horrified at their treatment of me and michael. Ours is a small town and i now feel a usless one at that but i will fight for my son as all i want is for him to feel good about himself. He is saying things to me that(he doesnt know)his dad used to say to me and he did commit suicide? (michael thinks it was a car accident.)

[bb1976]

Thankyou, yes i took this to them with my mum (who they say is an unhelpful influence because she supports me as are my sister and my best friend.) they say its all hear say and they dont listen to that!! I find them highly annoying and disrespectful and full of there own importance, to quick to judge and only do half a job, they took back ground information off me about child hood sexual abuse then used it against me. i have been told i have over loved, protected, cared for my son and this is y he is its utter rubish. he needs an independent assessment b4 the teenage hormoans add to his allready difficult stages of his life all he has in me and my family and we r basically muddling through best we can to avoid him hurting himself again? do you have any other ideas? xx i have a complain going through about camhs since that they are now trying to say i have muchousens biproxy to cover there failure of michael. i have an advocate doing this with me i also have an advocate for helping me fight who is horrified at their treatment of me and michael. Ours is a small town and i now feel a usless one at that but i will fight for my son as all i want is for him to feel good about himself. He is saying things to me that(he doesnt know)his dad used to say to me and he did commit suicide? (michael thinks it was a car accident.)

Can a child have asd and aspergers or just one or the other?

[smiley1590]

puberty and hormones is hard/difficult period of time for any 'normal' teen but added into situation ASD and makes things more tricky stressful to tackle at times as lots of changes that go on during this time emotional ,physical and can be confusing to try and work through aswell as having an idea he may possibility have an ASD may complicate things even further for him who does he live with have S.S take him away from you does he live with foster family somewhere? but you not allowed to know where?! have i understood this situation correct? situations have 'improved' for me though i still feel suicidal quite abit and rush of depression hits me all of sudden which hard deal with manage and handle as you feel so lost i have taken several OD's ended up in hosp until early hours of morning from hours of scream shouting verbal abuse getting physical with my parents ending up in me being restrained and also self-harming ( cutting myself) your son sounds depressed do you think it could be that? making him think he'd be better off dead no here anymore? and low self esteem together?

 

XKLX

[smiley1590]

my mum was accused of being 'overprotective' by my junior's school SENCO and along the lines of MBP and by your situation it can be very hurtful and angry as nothing is proven or true can be soul destroying and wreck family lives and evident here really that's sad upsetting that if S.S have accused you of having this M.I that havn't looked into in further by assessing you by MH professional team doesn't make sense as they havn't got no proof!

 

sounds like him hurting himself is him trying to express his pain hurt inside his head etc and letting out his inner frustration confusion .... you can only take so much then you 'snap' 'break down' and i've reached that point before where you feel like nothing and no-one can reach you to help you out of situation! my advice is trying to find something else that help him release him emotions/feelings safely like sports ,exercises activities he enjoys to calm/relax him when feels like everything is 'out of control'

 

i would get in touch with NAS and see what they suggest...

 

XKLX

[bb1976]

my mum was accused of being 'overprotective' by my junior's school SENCO and along the lines of MBP and by your situation it can be very hurtful and angry as nothing is proven or true can be soul destroying and wreck family lives and evident here really that's sad upsetting that if S.S have accused you of having this M.I that havn't looked into in further by assessing you by MH professional team doesn't make sense as they havn't got no proof!

 

sounds like him hurting himself is him trying to express his pain hurt inside his head etc and letting out his inner frustration confusion .... you can only take so much then you 'snap' 'break down' and i've reached that point before where you feel like nothing and no-one can reach you to help you out of situation! my advice is trying to find something else that help him release him emotions/feelings safely like sports ,exercises activities he enjoys to calm/relax him when feels like everything is 'out of control'

 

i would get in touch with NAS and see what they suggest...

 

XKLX

Thnka i will do this. i bought him some budda tea light holders as he likes to sit and breath while looking at them. i try my best to understand how he feels but i know i could never fully get it. it breaks my heart to watch the war i see in his eyes but i do intend not to give up and help him to the very best of my abilities as is my mum and sister. thanks again x

[bid]

Hi bb1976,

 

I think the best advice is to try your to remain as calm as possible in your interaction with CAMHS.

 

However badly you feel they are treating you, if they are making serious allegations against you, you need to present yourself as a calm, rational and responsible adult. However justified you feel, this will not be achieved by accusing them of incompetence in an emotional way.

 

Your advocate should be helping you put together your case in a calm, professional manner, backing it up where you can with written evidence, etc.

 

I do hope you find the help your family needs very soon.

 

Bid

Edited October 16, 2011 by bid

[bb1976]

Hi bb1976,

 

I think the best advice is to try your to remain as calm as possible in your interaction with CAMHS.

 

However badly you feel they are treating you, if they are making serious allegations against you, you need to present yourself as a calm, rational and responsible adult. However justified you feel, this will not be achieved by accusing them of incompetence in an emotional way.

 

Your advocate should be helping you put together your case in a calm, professional manner, backing it up where you can with written evidence, etc.

 

I do hope you find the help your family needs very soon.

 

Bid

 

Thankyou i am calm around them just not when i speak about them lol but yes i bare this in mind thanks again x BB x

[bb1976]

puberty and hormones is hard/difficult period of time for any 'normal' teen but added into situation ASD and makes things more tricky stressful to tackle at times as lots of changes that go on during this time emotional ,physical and can be confusing to try and work through aswell as having an idea he may possibility have an ASD may complicate things even further for him who does he live with have S.S take him away from you does he live with foster family somewhere? but you not allowed to know where?! have i understood this situation correct? situations have 'improved' for me though i still feel suicidal quite abit and rush of depression hits me all of sudden which hard deal with manage and handle as you feel so lost i have taken several OD's ended up in hosp until early hours of morning from hours of scream shouting verbal abuse getting physical with my parents ending up in me being restrained and also self-harming ( cutting myself) your son sounds depressed do you think it could be that? making him think he'd be better off dead no here anymore? and low self esteem together?

 

XKLX

 

he still lives with me huni and i will fight tooth n nail to keep it that way x

[cmuir]

Hi

 

Gosh, don't know what to say or suggest given how messy things are with CAMHS. The best thing that you can do is try and hold it together as well as you can – be articulate, calm, dignified, and continue to present a good case. My interactions with CAMHS haven't been easy and I used to come out of appointments feeling crushed. I realised pretty quickly though that I wasn't to blame, that only I knew what was really happening in terms of my son's behaviours and traits. Because I kept a diary (which I thought was an insightful and helpful thing to do in order to record accurate accounts for specialists), CAMHS told me I was being negative. Must confess to becoming cross advising that one doesn't go to your doctor to tell them that you feel great, but rather identify issues and seek a cure. In such instances, I felt there was no way back, in that this person fundamentally misunderstood me, but more importantly, failed to engage with my son. I was able to insist on seeing someone else. I wonder if this would be possible for you to do – it is so important to start with a fresh slate whereby you feel you can trust CAMHS and equally they'll allow you the time to show that you're not suffering from MBP.

 

Very best wishes.

 

Caroline.

[bb1976]

tbh i am not sure there is a way bk with camhs as from the word go michael hasnt liked or trusted his lady i have had to encorage him to go every week and had some major flip outs on his behalf at being made to go but there must be other places he can go for support. i have put my sefl forward for a psycologyst aswell as i need to off load how i feel also. i hope to get things sorted i need to step back and clear my head and work out where to go from here. I think that camhs feel they are more important than they actually are and keep being told by friend they are just a general practice and have no right to refuse michael a second opinion or diagnosis. but i will fight tooth and nail to keep my son i have done nothing wrong. Beth x

[smiley1590]

are S.S involved also? as surely if you 'were' MBP they would place michael in someone else's custody care home for his safety and well-being? so if this was the case he wouldn't be living at home with you?! seems bit confusing mystery to say the least on CAMHS part seems like haven't got no real anything proof /evidence to base the MBP on at all? everything seems complicated!

 

XKLX

[bb1976]

are S.S involved also? as surely if you 'were' MBP they would place michael in someone else's custody care home for his safety and well-being? so if this was the case he wouldn't be living at home with you?! seems bit confusing mystery to say the least on CAMHS part seems like haven't got no real anything proof /evidence to base the MBP on at all? everything seems complicated!

 

XKLX

 

I know!!! yes ss are involved they dont have proof nothing no assessments or any thing they just wanted michael back at camhs when actually i never stopped him going? i feel quite bullied tbh. x

[JCB]

I don't have any advice re the ASD but with the FII/MBP, stay strong. We were accused of it too over something completely different - we used private healthcare and the NHS didn't agree with several diagnoses. It was HELL. It lasted 10 months and has only just ended. We felt like giving up completely. Our kids names thankfully were kept off the register as we had LOADS of proof inc. EVERY letter and test result but it could have gone a different way. I wouldn't give up trying to get a diagnosis, even if they think you are making it up. Ask for a different CAMHS person maybe? This may actually help your situation as well as your child's. If they try to take your child, they will go to the nearest family member who they don't think is 'in on it'. Good luck, my heart truly goes out to you.