DD 4.2 and HV wants her referred for her "quirky ways" no experience and need help

[justgavebirth]

Short story - I nearly lost her in pg and she was born without her forearm. This does not hinder her but she was deprived in pg for many weeks.

Anyway She is a bit quirky. Things include:

Seriously delayed speech but this is getting better
OCD since birth, quite bad which has been a worry like obsession with lining things up, clean clothes etc....
Unexplained fears - she wont touch coins
Links onto things like at moment she will only eat cheese sandwiches.
Teachers have mentioned that they have trouble getting her to switch tasks such as from reading to singing
She prefers to play alone but will interact.
She is strong willed and basically likes routine. If we break it, we get tantrums.

We put it down to personality but HV was slightly concerned and is having her referred. Is there any conditions which she is displaying symptoms of?

Sorry should add that some of these are recent developments like the coins. OCD has been since very young and speech has been an issue but everything else has developed over the last 6 - 9 months

How would you say her eye-contact is, justgavebirth?

I would have thought, to be honest, that the HV is wanting to see if your DD is displaying traits of an ASD (Autistic Spectrum Disorder).

Lots of children with ASD have difficulties with social interaction, making eye-contact, like routine, and have sensory issues.

Have a read of the SN board, there are lots of threads around ASD. You will either think "that sounds like DD" and be comforted that you are identifying her 'quirks', or you will think "DD is nothing like this", and be comforted that her 'quirks' are just quirks.

One thing to bear in mind is that if your DD does have any SNs, early identification and intervention is crucial to a good outcome, so it is best to welcome any assessments you are offered, even if they simply prove that your DD is a little quirky.

Thnx Lou, TBH her eye contact is confusing. SHe is very independent and rarely holds a full length conversation. If she does she is twitchy and conversation is hard to follow. But if she wants something she will ask direct with full eye contact.

I also didn't mention that she has a slight sniffle and will sit for hours on end rubbing her nose until the skin between the lip and nose is practically peeling off. This happens every time she gets a slight cold.

Its very frustrating as I often wish I could get into her head to understand her better and I find it hard work.

I think maybe I have had my eyes closed for a long time as people have been hinting for a while but I have heard of mis diag and I didnt want her labelled so young if it was just personality IYSWIM

I have just typed in ASD and I am devestated. Devestated that I have done nothing. This is my girl to a tee and I dont think I wil have to fight for a diagosis at all. There is not one thing that she doesnt do.

The taking adult speech literally made me remember that yesterday the cat came in where she was eating on the floor and she screamed at me to get him away so I said as a matter of speech "just kick him out of the room" and so she booted him full pelt.

I was shocked saying she was old enough to know better blah blah and she burst into tears as I had told her to do it!!

Justgavebirth - just sending you a big hug, don't be hard on yourself.

xx

Me too, justgave, most of us have been there, I certainly have and three weeks after the diagnosis I'm still having to pull myself up short and try to see things from my son's point of view.

After all, why wouldn't you tell a neuro-typical child off for that? Any good parent would. If DD has an SN you'll contine to be one but will adapt your parenting accordingly

justgavebirth, have a . It may not seem like it, but this is a good thing! You are identifying what makes your little girl tick, and you are doing it before school age, which means that you will be able to get her additional help to make sense of the world. Imagine how you would feel if she was coming home from school having been told off for following instructions literally, and not knowing why she would do so?

Take a little while to regroup, and then I would recommend going to your GP and asking them to get you a referral to a developmental paediatrician.

please dont beat yourself up, and know that most children are diagnosised age 6years, so your not late. I have 2 girls, one with high functioning autism and is doing very well in mainstream school and one aged 2.5years who is being assessed, but only this early due t her sister, if not we would have been told to wait.
There is loads of support out there, and some very positive parents and children.

When you wrote your post I though ASD, but then i felt terrible too as I missed it in my own DD for a long time and I work with SN children!

Hope your ok

Thank you all so much for your help.

Just wondering how you all coped with family members especially some older members who dont believe in ASD. Has anyone come up against this?

She has so much to face as she starts school. She copes well without her left arm but it doesnt stop the kids from poking or grabbing her. This would be another ountain for her to climb.

I thought it might be a common problem Leonie. I was quite upset that when I tried to discuss my concerns with him months ago, he just told me to stop labelling her and when I told him that school, HV and Speech therapists had expressed same concerns His response was what do they know.....she's fine.....blah blah blah. I thought it must be his age LOL They had babys with towels and hot water in those days!!!

I admit to a certain amount of smuggery (well you have to take positives where you can get them) with regard to my parents and sister and in-laws that it was not my fault for being soft on DS, that he doesn't sleep, barely eats, doesn't get "no", can't be calmed or distracted or reasoned with and that he processes information in a different way. But they were horrid for almost three years and they still can be to be honest.

The National Autistic Society has this page full of links which may be helpful.

here is another page that may be helpful for explaining things to grandparents. this one is specifically for children with aspergers, but could be adapted because the information is similar. i think that nearly everyone who has been through this has coped with disbelieving relatives.

go easy on yourself. hopefully, now, you and dd will begin to get support. this is a lovely, helpful site, and i'm sure you'll get lots of good advice here.

i missed my sons asd for years dispite obvious traits, unusual gait,hand flapping,mono sylable talking and literal interpretation. my son responded really well to my telling him to just copy what the other kids were doing even though he found it strange,it took him many years but he now goes to college independantly and copes really well, despite his quirky ways or jakeisms as we fondly refer to them

It might be a bit of a shock right now but in the long run it's good to get as much help as you can, both you and DD will benefit.