hello everyone

[Mum of 3]

Hi, I've been hanging around reading for a while now, and thought it was about time I introduced myself.

I'm hear to gain support, information and understanding for my beautiful son, G, who is 5, and currently awaiting assessment for AS, and my DH, T, who keeps saying 'That sounds like me!' every time he reads or hears anything to do with ASD !

I also have two ather beautiful boys, BB, 3, and t, 18 months.

I've had problems with G for years, looking back, since birth- he used to SCREAM so loud and so long and I could never seem to pinpoint why- I tried colic remedies, massage (he screamed even more!), swaddling (!) and rocking for ages. One night I'd had enough, so I fastened him into his baby bouncer, and left the room. He shut up immediately!

The tantrums started very young -I remember someone in a shop saying it was the terrible twos- and I said I hoped not, as he was only one! Trouble is, now he's 5, and he's still got them!

It got really bad a year ago, and I asked my HV for help. She made a couple of visits to the house when he was at pre-school, and talked vaguely about behaviour strategies. I said I'd tried them all-nothing works! She visited once more when he was in, and he started shouting insults and throwing bricks. I went upstairs to stop him, and she heard me talking him down, then she said I seemed to be dealing with it really well and left!

I finally went to the doctor after he threw his brother off a top bunk on holiday because I'd said he wasn't allowed to go up and he had done. BB was really badly bruised, but G was just screaming 'But you said he wasn't allowed up!!!'

The doctor asked me what I thought, and by this time I'd read alot and said I thought it was ASD, probably AS, and he agreed and refered us to a paediatritian, who was just BIZARRE-came out and said 'Are you G? come on then, follow me,' and started walking. G looked really confused, so I said, 'I think I should come too, don't you', and Dr said 'If you must!'. He talked a bit to G, and G started getting bored and mooning around. G kept trying to climb on my knee and stopping me from talking. By the end, Dr said he thought it wasn't autism, as 'an autistic child would just have come with me- he wouldn't care if you came or not' (what do we all think of that?), and had I considered that he was just naughty? I said I'd rather it was naughtiness than AS, as naughtiness I could deal with. He said 'I haven't ruled out AS, I'll see him again in 6 months'. That was in September. Our appointment is in April. The man doesn't seem able to count either!

Meanwhile, I self-referred to the Ed Psychs, who gave us a screening test withinn 10 minutes of talking to us in which he scored really highly on all the areas. She then went to see him in school, and referred us for a multi-agency assessment, which we are still waiting for.

His teacher is concerned about his lack of socialisation, and dependence on adults, and semmed relieved when I suggested she talk to the SENCO. (She started saying money's tight but it may be possible to find money for extra support, so I suspect she already has done!)

Has anyone got any advice for us about how to procede from now on?

Sorry this has turned into such a ramble. I'm happy for any of it to be moved if nec!

Thanks for reading!

[NickyB]

I've had problems with G for years, looking back, since birth- he used to SCREAM so loud and so long and I could never seem to pinpoint why- I tried colic remedies, massage (he screamed even more!), swaddling (!) and rocking for ages. One night I'd had enough, so I fastened him into his baby bouncer, and left the room. He shut up immediately!

The tantrums started very young -I remember someone in a shop saying it was the terrible twos- and I said I hoped not, as he was only one! Trouble is, now he's 5, and he's still got them!

 

Hello and welcome

 

That sounds just like my youngest (he's 6 and has high-functioning autism). He was diagnosed when he was 4. He would scream and scream when he was a baby, and there was nothing I could do to calm him. At the moment, we feel like we are walking on eggshells just waiting for the next meltdown. The system seems to vary hugely from one area to the next - we were very lucky as it only took 6 months from initial referral to diagnosis.

The school are currently applying for a statement for him. They have said that, although they have funding in their budget for SEN children, a statement will help them to focus their resources better. As it is they do a fab job, but I think he's going to need more 1 to 1 help.

 

I'm sure you'll find lots of help on this forum, as I have

 

Take care <'>

[Mum of 3]

Thanks for the welcome Nicky. It really helps to hear we're not alone!

[Kathryn]

Hi mum of 3, welcome to the forum.

 

It sounds as though things are proceeding as they should for the moment: keep pushing for the multi disciplinary assessment, I would, and wait for the outcome of the assessment in April . Hopefully the Senco can come up with something in the way of support at school. You may want to eventually consider applying for a statement if the school is struggling to provide the support he needs, but it helps if you have built up a body of evidence of your son's difficulties beforehand.

 

K x

[mac4]

Hello there

 

I'm a newbie too. My B was diagnosed last year and I remember the waiting was awful. Our family waited 6 yrs for a diagonsis!! We went thought the first assessment to find she had two of the marked impairments then two years later after some social event's which left our daughter extremely vunerable we were then encouraged to re-assess and then promptly given the diagnosis. You seem to have an understanding of some of his difficulties my advice would be don't wait for a diagnosis, start using things like visual timetables, calming down techniques, help with problems with noise, what ever your child has problems with. I remember so clearly the extreme behaviour which is gradually becomes less difficult to deal with and if they have your help and understanding they aren't getting so stressed. I would get so cross with her when she was rude at competitions, birthday parties, if she didn't win and she could rant for hours about the injustice of this now I just accept this I don't get angry just reassure her that it's ok to feel sad about these things.

 

In your sons mind, he was the only one allowed on the bunk. Understanding that pushing the intruder off the bunk bed wasn't so good will take time and your patience to explain and he might always struggle with that.

 

Keep going don't give up the diagnosis opens doors to support for your son and your family!!

 

 

[Mum of 3]

Hi Mac4. Thanks for all the advice. I downloaded some visual timetable picture yesterday-just need to find time to get creative! It's really interesting that you were able to be re-assessed - one of my worries, as he is still young enough for alot of his behaviours to be due to his age (although that is becoming less and less likely as time goes on, obviously), is that we will go through all this, and then be told he doesn't have AS, and we'll be back to square one, only 18 months down the line!

I know what you mean about birthday parties-G always bursts into tears when there's a birthday and we all sing 'happy birthday', even if it's his own birthday! We nearly missed my Mum's 70th because he was so anxious about it he was completely out of control for the whole morning before we set off. He ruined the cake I'd made, and refused to go wearing anything nice- ended up in back-to -front jeans and an old faded t-shirt worn inside-out! At least it wasn't his PJs, like he tried to go in. lol!

Thanks for your advice as well, Kathryn. I've set for a pack someone else here recommended, which has all sorts of things for you to keep records of in it. I've also been keeping a diary for some time (but need to remember to write in it!!!)

[pookie170]

H I would get so cross with her when she was rude at competitions, birthday parties, if she didn't win and she could rant for hours about the injustice of this now I just accept this I don't get angry just reassure her that it's ok to feel sad about these things.

 

Oh my! Cal often does this even now, but he's getting better (has made bagloads of progress in this, upon reflection!) at coping with the immediate disappointment/ unexpected event.

 

 

Its nice to meet you, Mum of 3, and I hope things gop as swiftly and as helpfully as possible for your son.

 

Esther x