New here, looking for support and advice

Carrie - posted on 01/14/2012 ( 4 moms have responded )

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Hi, my name is Carrie, I live in England, I'm 29 and I am hoping to meet moms in a similar situation to me. I have a 10 year old son who's needs have been very demanding since he was first born. He constantly screamed as a baby, and as he got to toddler years he would smash things up in a temper, attack his older brother (22 months older than him) pull furniture apart etc. I know these things can sound crazy when you think of a toddler causing such chaos, people probably wonder why I didn't stop him or give him time out but I tried and he was so physically aggressive and strong that it was difficult to do anything with him. He started nursery just before he turned 3 and I was soon being called in because he was smashing everything up in the classroom, it was so bad that they were having to take the other children out of the room. since then we have been in touch with health visitors, psychologists, psychiatrists, paediatric care, educational support, behaviour support teams and 7 years on we are still struggling. He has physically harmed people and us too. It was suggested that maybe he was on the autistic spectrum in 2007 but after the assessment they came to the conclusion he wasn't, however 18 months ago he was re-referred for another assessment but we are still waiting to be seen.



Obviously as he gets older, he's getting bigger and stronger. I am very worried for his future. He can be loving and kind but he has a very different side too. He can also have times where he looks like he's not really aware of what's going on around him, like he's in a world if his own. Academically he is very able, not always willing to learn but does have the ability too. His IQ was done a few years back and it was above average for his age. He was put on risperidone about 3 years ago, he then started refusing to take it for a while but went back on it a few months a go. His behaviour is starting to get worse again and I guess I just want some support and advice from other parents who may understand this. It's hard because he has no diagnosis so we don't really know what we're dealing with. One thing I do know is that he can't carry on like this. Please, any advice you have I would be truly grateful.



Thank you in advance.



Carrie (England)

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Carrie - posted on 01/15/2012

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Hi Christy,



Thank you for your reply. Unfortunately we don't have the funds to go to another country for a diagnosis. If ever we did though, I would definitely jump at the chance. We have been seeing specialists here in England for over 7 years and still have no diagnosis. Maybe one day.

Carrie - posted on 01/15/2012

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Hi Neva,



Thank you for your reply. Yes we have taken our son to many different specialists. He does find it hard when his routine is changed depending on the situation like what type of change, for example on Tuesday his school went to the theatre he knew they were going from the week before but it stil didn't go very well, but another time his one teacher was ill so he had a different one ( who also supports him) but wouldnt normally have been there at that time but he was fine. Eye contact is a big thing, he really does everything possible to avoid it and if he does give eye contact it is very short he won't maintain it. There is a history of mental illness on my side of the family (depression and it's thought that my nan had a personality disorder) there aren't really any development delays in the family though.



We do our best to prepare him for things in advance, and behaviour charts/ rewards are in place too, although these only work for about 2 weeks before he ' doesn't care' ( his words) for the rewards. The jar sounds good though that is worth a go thanks.



Thank you for taking the time to reply, I appreciate it.

Christy - posted on 01/14/2012

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I see you are waiting to get him re evaluated. Is it possible to go to another country to see if you can get a definite diagnoses sooner? Like the in United States?

Neva - posted on 01/14/2012

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Carrie,



I'm not sure what kinds of supportive services are available in England, but it sounds as if you have taken your son to many different specialists. It is quite possible that he does have an autism spectrum disorder. Children is Asperger's, for example, can be super intelligent, but they have issues with social cues and sometimes sensory integration problems, such as extreme sensitivity to noise, textures, etc. Does your son become angry and act out when things to not happen in the way he expects? Does he have trouble with spontaneous changes in routine? Does he make eye contact with others, or does he avoid eye contact? Is there any history of mental illness, developmental delays, etc. at all in the family anywhere? All of these questions might help answer exactly what is going on. In the meantime, try to keep him on schedule as much as possible. If he is expecting his day to be one way and there is going to be a change, prepare him for that ahead of time, so he knows what to expect. He does need discipline, but the adults need to stay as calm as possible. Behavior charts, or token jars might be helpful. The token jar works by explaining what is expected of him. Try to engage his teacher. If she can give him daily behavior reports, for instance if he has a good day, he gets a smiley face, if not a frowny face. If he gets 5 days of smiley faces, then he gets a reward of some sort. Special time doing a game with his parents say. He can also use the token jar in a similar fashion. If he behaves well, he can put tokens in the jar. When he misbehaves, he has to take a token out of the jar. When he has a certain amount of tokens then he can use it for say TV time, video time, or some other activity that he wants to do.

I do assure you, though, that you are not alone. There are other children that have issues that don't have a diagnoses yet. Keep working with your health care professionals and don't give up until you have an answer.

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