Hi and feeling disheartened

Hello everyone. I am a single parent of 2 boys 9 and 8. my youngest is the reason I have joined this Forum. i have been asking for help for a few yeears now due to his increasing anxiety, meltdowns that are increasing in intensity and violence towards me and his poor brother. and so many other things. I had been referred to a paediatrician 7 months ago.

The school present my son as a model student with confidence issues and low self esteem. Despite the numerous times I have stood at the heads door again to report real concerns about his behaviour, inability to make friends, constant bullying by a group of boys (one of which is her son). The fact that he comes home with messed trousers with his refusal to open his bowels any ware at home and if he does go for a wee, wet trousers from sheer panic and fear of the toilet. He self restricted diet and now his visions of peoples faces changing in the playground. He seems to thrive for the routine at school but bottles up all the pressure like a shaken can of pop and explodes at home.

the paed read the schools form and only about my families mental health and nothing else. 15 mins later I was told he made good eye contact he spoke to her and she will not label him but will refer him to cahm.

and so it carried on visits to the school, school nurse, senco, and  Long waiting list for camhs.

last week I phoned the gp in desperation, he has been hearing voices, he is afraid of his own shadow and sees peoples faces changing he has violent melt downs and was seen at Cahms 2 days later. 

amazing man asked me loads of questions and spent 2 hours watching him and said confident with spd symptoms poss H f a signs and just reassurance I am not going mad. but needs a full assessment and that means only option was to be referred back to the very same paed who brushed us off. His hearing voices and visions are apparently rare but wouldn't.t link to family history (cousins and sister with schizophrenia) And cos of my postcode no appropriate OT to refer to for his spd. He did say however that if all else rules out he wants to see him again. The things my son does and doesn't do, likes or runs from is too long but I do know he does make eye contact, he does want friends but is unsuccessfull all the time taks every word literally and is becoming depressed and more anxious. He has nightmares and sleepless nights forever.........

sorry for the long post but as u can guess just a parent who seems to be coming up against so many brick walls. 

Parents
  • I think if I knew then what I know now, I wouldn't have been fobbed off and fought my battle harder is really the only advice I can give.  My daughter makes good eye contact, used to be desperate to have friends (she's given up now) and took everything literally.  She was also a model student at primary but I was lucky in that they knew she needed help and were very supportive.

    I'm not convinced you are missing out much with the OT - my daughter has seen several, the most recent for SPD and although its 'nice' she's not been able to help with the major issues and although she's taught us some measures for trying to stay calm, I could have learnt them on the internet and they actually don't work when a melt down starts because the anxiety outweighs the calming techniques by far.  

    Can you take someone with you to the next paed appointment?  I felt I was given the brush off by mine several times but when I went to the consultant appointment who specifically deals with ASD (I moved county first!) my sister came who is much more pushy than me and although this consultant was a gem, she gave me the confidence to say what I wanted.

Reply
  • I think if I knew then what I know now, I wouldn't have been fobbed off and fought my battle harder is really the only advice I can give.  My daughter makes good eye contact, used to be desperate to have friends (she's given up now) and took everything literally.  She was also a model student at primary but I was lucky in that they knew she needed help and were very supportive.

    I'm not convinced you are missing out much with the OT - my daughter has seen several, the most recent for SPD and although its 'nice' she's not been able to help with the major issues and although she's taught us some measures for trying to stay calm, I could have learnt them on the internet and they actually don't work when a melt down starts because the anxiety outweighs the calming techniques by far.  

    Can you take someone with you to the next paed appointment?  I felt I was given the brush off by mine several times but when I went to the consultant appointment who specifically deals with ASD (I moved county first!) my sister came who is much more pushy than me and although this consultant was a gem, she gave me the confidence to say what I wanted.

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