I DON'T KNOW WHAT TO DO! (sorry long)

[loopyredangel]

I am the mother of a 2.5 year old boy. I have always thought that there is "something not quite right" with my son. His behaviour is very extreme, like Jekyll and Hyde. Lately it seems to be getting progressively worse, and I am now struggling to cope with this behaviour. Symptoms include: climbing were he really shouldn't (this week he managed to get on the bathroom window sill, climbs into the bathroom sink, and somehow into a small 2nd shelf up section of his wardrobe. He goes of on tangents, and hums, doesn't stop, like the Ever Ready Bunny, isn't really interested in food, and when he does eat it always has to be the same things. Doesn't like noisy situations, tried him at nursery and he was so distressed and complained it was too noisy and too many friends. We went to a party and lasted less than an hour because it was too noisy for him. He spins around alot, lines toys up very precisely. I don't understand why, but he has suddenly become very distressed at nappy changing time and getting dressed, he screams and lashes out, hitting, scratching, pulling hair, and kicking at anyone who does this. His expressions are though he is scared, very primevil screaming, huddles up and pulls top over his legs and crouches down. Acts quite vague when you talk to him, and you have to constantly talk at him to get his attention. What is so upsetting is, he can be such a lovely little boy. When playing with others, he doesn't like his age group, and he seems to be a bit of a loner at playgroup, will play his own little games. The odd thing when we are say at a soft play area, he will hone in on younger kids and become fixated by them, and will sometimes pin them down or drag them around. He gets bored very easily, and seems to jump from one task to the next. We lasted about half an hour at Forest Tots today, and he started running out of the building and away humming as he was running. He is quite a clumsy child, always falling and banging his head, his feet turn in, so we put it down to that. Shopping is becoming a nightmare, so much so I am avoiding it. He just wants to eat sweet things all the time, but of course we don't give into this as he would quite happily live on them. During tasks at play groups, when the children are asked to come and get something, he is the only child to hang back and be weary. Very quiet in large groups, but with familiar friends and family he never shuts up and seems very outgoing. I am sure there are things I have forgotten to mention. He also repeats things over and over again. He also wants to watch the TV all the time, of course we don't succumb, and try to distract him with other activities. He just thrives on attention, and wants more and more. I really don't know what to do now, it's becoming very upsetting for me and my husband. He seems quite clever and we worry what his future holds as we don't know how to manage him now. We have tried all kinds of things, but now are at a loss. Our DS, has always been quite difficult even as a baby. Like I said I am sure, there are more things I have not mentioned about his behaviour, and I am aware he is 2.5 and going through big changes, but he is very extreme. Does anybody have a child similar to this, if so what have they done about it, has the medical world supported them.

[MannyMoeAndJack]

I would say a visit to either your HV or GP would be a good place to air your concerns, obviously with ds in attendance so they can see him in action. What is his speech like? Some of the things in your description make me think Aspergers/ASD but getting such a diagnosis is based on a lengthy, multi-agency review process so if there is anything amiss with your ds, then it won't be identified immediately. With this in mind, it's always a good idea to get on any waiting lists. I hope you get some answers soon, I know only too well how challenging raising a SN ds can be and how tiring too (though by this, I'm not saying that your ds definitely has SN, just clumsily trying to offer some support).

[loopyredangel]

thanks for the support, I saw GP yesterday, as I don't know what to do anymore, I get so upset and can't stop crying about it. It doesn't help that I am in constant pain with my back and pelvis (getting pain injections next week). God help me going in for them, as DS will flip because its not routine! He battered me just for changing his nappy! His speech is fabulous for his age, he does mix up letters, and he will repeat words over and over and over again. When we try new words he will sometimes say too hard to say it, but I just put that down to his age. He never shuts up unless he is in a new environment then he becomes withdrawn.

[MannyMoeAndJack]

So what did the GP say when you saw him?

Going back to your ds, what would you say his social skills are like, especially with his peer group? When you say he never shuts up, is his speech communicative or is he talking more or less to himself? (out of interest, the repetition of speech/words is called echolalia). If you haven't done so already, I would note down all your concerns and perhaps include some examples of each concern so listed, or you could keep some kind of diary that you could show the HV/GP.

How long have you had concerns for?

[loopyredangel]

I've been concerned for a long time, but more so over the past year. Call it mother's intuition I guess, but I've always thought there was something not right, even as a baby. He doesn't really like to mix with his peer group, and becomes quiet and almost detached. His speech can sometimes be quite robotic if that makes sense and more pronounced?! He only talks to himself when playing games on his own, although when in a group of other children, they will be playing a game but he will be playing his own game and talking to himself!

[loopyredangel]

He prefers to be around older kids and adults

[loopyredangel]

he really doesn't like nursery and says too noisy and too many friends

[loopyredangel]

just reading up on aspergers, and DS's uncle on his dad's side has so many traits of it, as I have always suspected he has a large level of autisic/asperger traits but never been diagnosed!

[avenanap]

It sounds like he needs a referral for an assessment at the hospital. He has signs of a combination of things, this being said, we all have signs of various things aswell. It would be helpful if the nursery were to write some observations down aswell. MannyMoeAndJack has some good questions. Is your GP going to refer you? Does your ds copy accents off the TV?

[avenanap]

It sounds like he needs a referral for an assessment at the hospital. He has signs of a combination of things, this being said, we all have signs of various things aswell. It would be helpful if the nursery were to write some observations down aswell. MannyMoeAndJack has some good questions. Is your GP going to refer you? Does your ds copy accents off the TV?

[avenanap]

It sounds like he needs a referral for an assessment at the hospital. He has signs of a combination of things, this being said, we all have signs of various things aswell. It would be helpful if the nursery were to write some observations down aswell. MannyMoeAndJack has some good questions. Is your GP going to refer you? Does your ds copy accents off the TV?

[avenanap]

oops!

[loopyredangel]

not copying accents of tv yet, but will copy phrases. He hasn't lasted long enough at nursery for them to make observations, got progressively worse! Yes we are being referred but not sure how long it will take.

[avenanap]

It varies from PCT to PCT. I know it's hard but try to take each day at a time. He's not going to know that there's a problem, he won't know that he's not the same as every one else. It can be hard for a parent though so you need to make sure you have all of the support you can. If I can give you one piece of advice it will be to get to know him (I know you're his mum and you love him), get inside his head, try and see the world how he see's it. It is noisy, people are loud and scary. He feels safe when he knows what's going on, when everything happens at the same time. He needs order, hence the lining up of the cars. He can't cope when he doesn't know what's going to happen next. He can't handle this. He repeats things because the order makes him feel safe. he doesn't like the supermarket because you are buying different things (try ordering online). His world isn't the same as ours. He'll show you bits of where it is eventually. Contact your health visitor, she may be able to speed things up for you if you ask her.

[MannyMoeAndJack]

That's why you need to get into the system because the waiting lists are generally so long. The fact that you've had concerns for so long is pretty significant. At the 18mth age range, it's hard to distinguish 'phase' from 'difficulties' (and of course as a parent, you are always hopeful that it's going to be the former) but from 2 1/2 yrs onwards, it gets harder to explain any oddities in behaviour. Go with your instinct but remember that any diagnosis/es will not change your ds, he will be just the same little boy that you've had 2 1/2yrs but it is always advisable to find out formally if anything is amiss.

[loopyredangel]

THank you so much everybody. I know he will always be my little man, I adore him, it would just be nice to find out for definite, so I can learn to deal and manage with the condition. I already feel a little better, like I said I now know I am not imagining it x