Should these problems have been noted sooner?

[jenkins88]

Hi, my DS (3.6 yr's) has an appt with a dev. paed. in August. I pushed for him to be referred against the wishes of my H.V after he failed his 3.6 yr dev. test.

I've just done a search on the B&D board about this test and it seems that the testing criteria differs enourmously depending on who does the test. One poster said that her child had to give their full name and address and demonstrate 'stranger awareness' (WTF?). DS's test seemed very easy compared to that. He was tested on 6 different things, colours; concepts such as under/behind; making a bridge; body parts; drawing a circle and counting 3 items. He failed on all of them .

I only requested the test because DS also has quite severe speech and language delays and I wanted to get the ball rolling for intervention. I requested that he be refered to a dev. paed. but the HV said she wanted to wait another 3 months and then re-assess before referring. I insisted and she said that she would have to get permission from her boss first, although she backed down in the end.

I've just been looking through his red book and trying to remember back to some of the things that may have indicated problems from early on. I've got myself in a right state over this and I feel so angry that about the lack of care we've been given so far.

IMHO so many things about DS were not right from babyhood. He didn't crawl until he was 16 mts, never cruised (at 18 mts I used to pull him up to stand and walk around with him clutching my arm and I don't remember when he started walking independantly), he didn't show any interest in baby gyms and never explored things with his mouth so didn't self feed and he didn't babble either. Despite all of this and me constantly telling my HV that I was worried about his development I was always told 'he is age appropriate'.

Sorry for this huge rant. I just feel so gutted about everthing and I'm absolutely dreading the dev. paed. appointment. I just feel so useless. It's horrible to sit here waiting and feel that there's nothing you can do to change things.

Could I just ask a question to the mums of children with autism please? I know that leading by the hand and lack of pointing are autistic traits, but I'm not sure if I'm misunderstanding something. DS only started pointing recently, when I realised how significant it was and showed him how to do it. He will now point at things in books if I ask him to, but doesn't point at anything spontaneously such as things that interest him. If he wants something he will either get it himself, ask me to get it or if he doesn't know how to say it he will say 'I show you', take my hand and lead me to the item. I know that this is not strictly normal behaviour, but could it just be quirky or due to his developmental delays? Hope you don't mind me asking that.

If anyone got to the bottom of this: THANK YOU

don't really have any helpful suggestions - but wanted to say - sorry you have felt that your worries were dismissed by the health visitor. They seem to fall into two categories - switched on and brilliant or dismal.

Okay - now you need to step back - stop beating yourself up about this and be proud of yourself for standing up to her and pushing for the referral. You are not useless - you have done something very powerful - advocated for your child and not backed down when faced with opposition ( easy to do!!) Be angry and annoyed for a little while but again - you have to put it away and get ready to deal with the next step.

I spent a lot of time beating myself up when looking at my dd1 ( with down syndrome). We had such poor service in the UK and I really did not push for private referrals ( expense was an issue) or for other intervention. Now we have been in Australia for a year and the improvement in dd1 with regular therapy input - amazes me but makes me mad when I wonder where she would have been ahd we been here all along. Finally dh told me to realise that she had other amazing experiences in the UK and that we should not devalue those - mainstream nursery, touching lots of lives etc.

So August is almost upon us. Remind yourself that you have changed things - you have the appointment - step in the right direction and you have begun the process. If you were just sitting there waiting for something to happen - you would not have the appt and be waiting to see the HV in three more months.

So - well done you for standing up for your ds and for being firm with the HV.

Thanks Eidsvold

TBH I'm more angry with myself than I am with his HV. I look at toddlers now and the difference between them and DS at their age is astonishing. Why did I bury my head in the sand for so long? I so much wish that I had faced up to this earlier so that I wasn't going through this now. I feel like I've been hit by a train sometimes.

I feel so low at the moment. DS is going through a phase of not sleeping very well. He goes to bed at about 10pm but gets up and wanders around all night. If I go to bed and leave him to get on with it he will do naughty things like open the freezer door or throw DVD's out the window. He didn't fall asleep until 2am and it didn't seem worth going to bed only to be woken up at 4am by DP getting up for work. After DP left I couldn't be bothered going to bed as I have to be up at 6 anyway. I'm so tired and all I seem to do is sit here thinking about DS and his problems.

I feeling like I'm going mad sometimes.

The pointing behaviour you describe is similar to ds1's. DS1 will occasionally point to things that interest him- but usually with his whole hand or middle finger. He tends to point at things in books using my hand, and yesterday was trying to show me a visitors hair- again using my hand. If I say "show me...." then he'll point, but again not with the index finger.

Given your son's behaviours - I think the pointing needs to be looked at as part of him iyswim- rather than as an isolated thing. I think late pointing etc can go with delays or disorders.

Yes I think your son should have been picked up earlier- but I suspect many of us tell that tale. If I was redoing htings I would have pushed for a referral to someone who knew whatr they were talking about at 18 months- but I think when its your fisrt experience you don't want something to be wrong. don't beat yourself up about that. DS1 was dxed after the age of 3 when I'd suspected autism from 17 months....Have you seen the thread below on why isn't the CHAT test used routinely? I'm fed up of coming across children who could have been picked up one or 2 years pre-dx and would like to do something about it!

Thanks Jimjams

I did see the CHAT thread but didn't comment as I wasn't sure if it was relevant to DS. I just went back and followed the link to the test and have tried to remember how DS would have done with it a couple of years ago. I'll go and write a post on it in a minute.

I feel so sad and angry that these screening tools are not being used. Not only are they not using CHAT but in most areas you have to request a 3.5yr dev. review. I often blame myself for not getting early intervention for DS, but if I'm rational I know that I did highlight my concerns to several health professionals, and they more or less ignored me. As DS is my only child and I don't have any experience with other children, I was reassured by their lack of interest.

WRT the pointing. DS does use the correct finger, but like your DS only does it when prompted. He cannot follow a point either. He has learnt that when I point I am asking him to look for something, but he either looks at my finger or in any direction and rarely spots what I am asking him to look at. He doesn't use my hand as a tool as such. I would say he uses it instead of pointing. For example, yesterday he said 'I show you', and I resisted for a while as I was tired. Eventually I let him lead, and he took me to a vase that was only a few feet away from where I was sitting. He'd dropped some cars in it and wanted them back. He had to show me because he didn't know it was called a vase and doesn't know how to point, I suppose.

Jenkins You sound in a similar boat to myself and my 3 year old. Despite my drawing my concerns to the attention of the professionals at 18 months they are only just taking notice now.

I think the term age appropriate covers such a wide range. I remenber when my ds3 was being statemented he was classed as being "within two years approximateley" in certain areas and that was considered ok even though he was a four year old!

My HV has always been pretty good{but has left now) but referrals for SALT had to come via paed. I think everyone goes through the "If only I had done something sooner" phase, its very frustrating especially when the system seems so geared to the minimumn support possible. Don't let it get you down, your concerms are valid. Perhaps write it all down before you see paed as it is easy to forget at the appointment. Try to find out from paed what next steps will be and don't forget to ask how long any waiting lists are.

Jimjams My son only points on request and uses middle finger in a vague sweeping getsure.

Maddie - I have read some of your posts about your DS4 and alot of what you describe is similar to my DS's behaviour.

that anyone would think it was okay for your DS3 to be functioning at a level half his age in some areas. I've read about such appalling situations here WRT statementing .

Thats a good idea about writing things down for the dev. paed. I hadn't really thought of it like that before. I expected them to assess him and then ask me questions about his development. Will it be a case of 'why are you here?'

The HV who did DS last assessment was a new HV, brand new to the job. The old HV had a lot of clout with our surgery and I was frequently told by my GP to apeak to her over my worries about DS head (plagio), as she was more knowledgeable. When I eventually got my GP to refer DS to a craniofacial unit, my HV was told. I was waiting in the surgery a few weeks later and she actually came and challenged me about this. She said 'So, you're looking for a second opinion, are you?'. I should have told her to mind her own business and to not discuss my family's health in a waiting room, but I was shocked. This HV seemed to be over zealous with making referals for hearing/eyesight test's (which he passed) but, again, no good at picking up on developmental problems.

Sorry, to rant so much. I think this is 3 years of worry and frustration coming out all at once.