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Behaviour/development

Referred for assessment

17 replies

Bunraku · 30/09/2013 10:40

Im sorry for this long post but I don't really have anywhere else to speak about my worries. My son is 2.5 and recently came out of hospital. A health visitor came to see us a few days after as I had mentioned at hospital,some concerns that I had that DS did not appear to be growing out of.

The first was his speech and understanding. He only has a handful of words. Less than 10. Most of which he is unable to use in context and are not distinguishable to anyone but me and his dad. For example he says bye bye and hello at random intervals when nobody is leaving the room, but when somebody (even close people such as his dad) greets him he just stares blankly, or in the case of strangers he hides behind mine or my husbands legs. He cannot understand an instruction "where is..../go and fetch/put the paper in the bin" and often when spoken to by anybody, he just screams or tantrums.

The nursery has recently raised an issue with me that he will not readily change activities without a tantrum, or play alongside the other children. He makes a conscious effort to move away and if he can't get away he tantrums. However he is 2 and tantrums at everything from being spoken to, to being given a drink, to not wanting me to sit down.

His eating is very restricted. He will only eat toast, yoghurt, porridge, biscuits and crisps. Anything else invites a tantrum and ends up on the floor almost immediately.

Behaviour wise he often walks around flapping his arms and making a noise, repeatedly, a bit like an owl, I always thought he was playing but people always mention it when they see it. He also sits for extended periods pulling out his eyelashes. I cannot stop him doing it as he either melts down or just completely refuses to stop it. Every toy he has ever had, he has destroyed and even when shown he just does not grasp how to play with them properly. He just breaks them, throws them, or if he has a lot of the same object, blocks, cars etc, he lines them up. Mostly though he cries for credit cards, phones, keys, pens, my purse, coins etc and just likes to hold them. He is absolutely uninterested in the toy versions.

The most embarrassing issue I have kept solely to myself for months. I feel so ashamed and like we are dirty people and bad parents because, daily, no matter what We have tried from backwards babygros, duct tape, popper vests, dungarees, potty training, at nap or bedtime, despite using the toilet before,my son is able to produce more faeces which he most purposefully wipes all over his face, his arms, his room and his toys, walls, doors and furniture. Cleaning it is gruelling and I am very worried about the serious hygiene risk it poses to him and so after him being so ill in hospital with pneumonia I confessed all these things to the health visitor. She left me a few sheets to fill in, i think they were called aqs? which I did in detail and she scored them two days later. She looked concerned when she said her cut off was 57 and DS scored 185. She made referrals to SALT, a paediatrician and a hearing specialist but I am just so lost. She didn't explain much, she just said "there are some concerns"

I feel like I have utterly failed as a parent by admitting that we are struggling so much. I do not know what the scoring indicated, or what concerns she had, concerns for our parenting? Other than the issues I've mentioned ds is happy and smiley and We love him so very much! would say he is extremely affectionate, however the hv scored it as clingy. What is it that We have failed to provide for our son to affect him in this way and result in him being so behind? From when he was born we have always read to him, talk to him all day, take him out, offer lots and lots of messy play (he really enjoys sticking things) and tried to provide him a good variety of a week. It makes my heart feel so heavy when people almost sneer at how he doesn't "perform" like the other children in the family.

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MamaM76 · 30/09/2013 11:35

I really feel for you. It must be so hard looking after him. I know its hard, and easy for me to say, but try not to let other people's look bother you - your son has only you to defend him and know him better than anybody. Be strong for him. There are a lot more to come as he grows up, whatever the child is like. So take a deep breath and accept this is the way he is.

I don't have any advice I can offer but the questionnaire might be autistic quotient questionnaire. I think it is a good news that your Hv is making a referral to various professionals who can help your boy. My dd can also be a problem. At the beginning I blamed myself and questioned where I have gone wrong as a parent. But you know what? The bottom line is there is a way to manage certain behaviour and you will have to learn this from professionals.

And please please do not compare your son against other well behaved children. It is not fair. And who knows, those well behaved children may have a tantrum or have a habit or two that the parents don't want to discuss. you just do not know what goes on in each family. You have to set your expectation at right level, for him, rather than what the society think is the norm or age appropriate.

One thing I would do though, for now, is avoid a situation that causes tantrum if you can. Just for a little while, so that both of you will get a break.

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Bunraku · 30/09/2013 12:33

Hi thanks so much for your answer :)

I suppose all we can do is sit and wait to see if appointments are forthcoming!

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chocnomore · 30/09/2013 12:50

to where have you been referred? SALT? Dev paed?

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chocnomore · 30/09/2013 12:54

oh, just read it is SALT, dev paed and hearing test.

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NothingsLeft · 30/09/2013 13:01

I agree with everything said above. It's great you have reached out for help and being referred for proper assessments. I'm sorry he's been unwell recently. How stressful for you all.

The poo thing sounds hard but don't let it get you down. You are doing your best. Its nothing to be ashamed off, he is still very little. I would give your HV a call to discuss any tips she may have and find out a bit more about the questionnaire.

He's sound like a lovely little boy with great parents Smile

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chocnomore · 30/09/2013 13:08

your DS will probably have a hearing test just to rule out that there is an underlying problem with his hearing causing the speech and language difficulties.

why don't you pop over to the Special Needs board? there are loads of mums with DC with similar problem.

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Rooners · 30/09/2013 13:17

You poor thing. It sounds as though the concerns are for his behaviour and development, not about your parenting. You sound brilliant and he sounds like a sweet little boy who is having difficulties.

I'm in no position to diagnose anything here but the AQ is to do with the autistic spectrum. If your little boy has any trouble with his hearing, his speech, or is autistic then there are a LOT of things that can be done to make his life, and your life, easier.

Also, please be assured that these problems are not your fault and there is nothing you could have done to prevent them xxx

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BlackberrySeason · 30/09/2013 13:26

This reply has been deleted

Message withdrawn at poster's request.

Bunraku · 30/09/2013 14:59

Thank you all again :) sorry for the slow replies! I'm hopeful that whatever the hv is doing is all in the interest of helping DS and I know in my heart that something is not quite right but I wish my partner's mother would stop acting like he is stupid and saying "isn't it a shame he isn't clever like x because when x was one he said more words than yours does now / did this that and the other" . it makes me so tearful to feel that people are judging him already and labelling as a "shame" and a "pity". And a couple of the parents outside the nursery look at him and tut to their children, audibly, about the "naughty little boy" because he wants to stay with his mum and expresses that in a way that he is able to. Since he was born my mil has judged and compared him unfavourably to his cousin who is the same age. She never tells people that there are plenty of things he CAN do. He is wonderful at art, loves to spend time with the dogs and two of his few words that he is able to use in context are please and thankyou. I think the fact he has manners is wonderful. I'm not altogether sure how to react to people's negative comments so I just ignore them and feel sad about it later. I really hope the appointments come through quickly and he can get some help

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lollipoppi · 30/09/2013 16:33

Your doing a great job, it's so hard but please try not to let other people (especially your Mil) get you down

With you mentioning that he has just got out of hospital is this an ongoing issue or a one off? I'm guessing he had prednisolone (oral steroid) you will often find behaviour deteriorates when having this, is he on any other long term medications?

Ps hope he is feeling better

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Ineedmorepatience · 30/09/2013 16:40

Hi Bunraku Sorry you are having to go through this. Dont feel bad about the poo smearing, it is horrible but surprisingly quite alot of children do it.

I think you should come over to the Special needs children board, there are lots of people over there with experience of the issues your son is having.

It is friendly and supportive over there.

Smile

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Bunraku · 30/09/2013 16:47

Hi lolli, he was in the hospital for pneumonia so the only thing he was given was antibiotic cefalexin(?) he is not on any other medication but both the nurses and the play co ordinators there seemed concerned that he couldn't answer yes or no questions and threw a tantrum upon seeing my dad and brother,instead of being pleased to see them, asked me if I had ever had any concerns about his development.

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Donki · 30/09/2013 16:48

you have not failed. SN are not the fault of the parents. You sound as though you are doing a good job in difficult circumstances. There is nothing wrong with needing help. It is very common to question yourself and your skills in these circumstances - it is not your fault. :)

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Bunraku · 30/09/2013 16:48

Ineedmorepatience I am just going to do the whole dinner/bath/bed thing and then I will pop over to the SN board and have a read, thanks :)

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dietstartstmoz · 30/09/2013 16:52

Hi Bunraku-I'm sorry you are having to go through all this stress and anxiety. I agree with others, the HV questionnaire was probably looking for signs of autism, and the referrals are part of this. It's very good that your HV is dealing with this. Come over to the SN children boards and ask any questions you want. Our youngest son does have a diagnosis of autism,and 3 years ago he was referred for assessment. I was in a blind panic and I will never ever forget the feeling of despair I felt. I came to the SN boards and everyone was so helpful. Anyhow, he is now doing so well and making such progress. Whatever the outcome of the assessments remember that you have done nothing wrong. come over the the SN boards, you can vent all your need over there.

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MedusaIsHavingaBadHairday · 30/09/2013 19:01

You have done nothing wrong!

It does sound as though referral is a good idea, and tbh he has a lot of red flags for autism (not diagnosing over the 'net so don't quote me) (I work with young children who have autism)

Early referral is GOOD. It's great in fact because the earlier you have intervention and access to support, the better for you all as a family and the better the outcome for your DS.

Ignore ignore the tutters and starers.. they know nothing. And IF he does indeed have autism or other SN, remember this.. it's not your fault, and many many children have special needs and it's not terrible evn if it feels like it at times.
I say this as the other of a young manwith autism who didn't have a single word til he was 4, and lived in a world of his own. He now never stops talking (about his obsessions mind Grin) and is doing pretty well considering!

Come to the SN board.. we are friendly:)

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BlackberrySeason · 30/09/2013 19:30

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