No diagnosis and I'm just so tired of it all!

[lostscot]

I should have namechanged but I don't have the energy, few friends in real life know how bad it it and I know a few mumsnetters so if it's you please be gentle with me!

I just need to vent really and this seemed the only place, dd is 9 we were referred to Cahms When she was 7 but they told me it was all anxiety due to too much pressure at school roll on to now and we've been back to community paediatrician as it getting worse. Saw him in September and he tried to send me packing saying her difficulties weren't causing serious social or educational difficulties so not a problem really.
Basically she struggles with change, is fidgety, chews anything, impulsive, lacks social skills, easily distracted etc etc.
School always said its age she'll grow out of it but eventually this year after she's spent days crying in class , trying to escap, not talking and having to be held in there so I can leave her they've agreed we need help. They wrote to hospital but he basically ignored that too.
I've now had consultants report saying I was looking for a label of aspergers or similar and he doesn't see any of that in 20 min clinic appt except a little distracted but has send a conners scale and a social communication questionnaire to us and school and he will reconsider feb.

This week was a nightmare, sat she lost it in supermarket crying I don't like it take me out on and on so I did and she just curled in car, Tuesday was brownie party and because it wasn't normal she chewed, cried stayed in corner but didn't want to get home. I could have cried when a helper asked how old she was and told me I hope she's grown out of it by high school!
Today she had to be held by teacher in class while I left as she's got so worked up over her trip out and final straw was tonight when a new girl shed got friendly with went home for tea with another friend. Petty I know but I've had them both to us just last week and not once in 5 years of school has dd had a invite in return.
I'm just so tired, my heart breaks for her that whet her friends take for granted isn't what she has and my stupid husband just said " they won't invite her, she's different they see that"!

All is not lost. From now until Feb you are going to keep a log of every thing that goes wrong, every difficulty so that the stupid consultant changes his tune (your dd was obviously much better 1:1 with an adult than in a school classroom some children ARE)

In the meantime if you think she has ASD like difficulties you can ask the school to treat her as if she does have a diagnosis and make allowances for her, encourage her, reduce change, warn of transitions, social stories, the works, friendship bench in playground, buddying up.

They are meant to respond to NEEDS not diagnosis. When she goes into school and is anxious are they finding out what is making her anxious about school day, a test, the noise, the people who aren't playing with her, the work, does she understand it? All these things are anxieties and stresses that school could reduce for her, if they set their mind to it, by simple strategies.

Have you considered dyspraxia as well, or has she seen an OT? Some social clumsiness and shyness can be dyspraxia rather than ASD. My son was v emotional at that age, very naïve, easily cast down and "babyish" to others.

The other thing I found with my two with SEN is that with social communication issues you have to fill up a big void in their self esteem. You can fill it, but it takes an effort, lots of stories about things that you found difficult as a child and how it turned out all right, or funny disasters, recognitiom of their fears and not ridicule or exasperation, valuing their resilience ("I really admire the way you go to school although I know it is hard for you sometimes to walk in that door every morning") praising little specific helpful things they do. It all helps remind them they are worth something even if peers don't seem to value them or they retreat into anxiety. It is not the same as saying there there or just indiscrimate sympathy, it is helping them go forward when they want to go backwards.

Shame on that Brownie woman!

Dyspraxia can cause significant sensory issues too. An OT would find out if she had sensory processing issues. Can you get a referral from your GP ASAP for that specifically?

Thank you both, actually I've been thinking she has lots of sensory issues, clothes, touch, feel etc too. One girl commented on her baby voice. Headteacher did ask if we'd considered dyspraxia....there a private it locally I've been considering maybe I need to speak to them as can't face joining now list again plus I'd heard nhs didn't fund sensory issues?

I'm struggling to get my head round how thoughtless adults are especially brownie lady and other mums.

Private ot even.

I think school consider it a success if they get her in the room on bad days! It's difficult as I work in school too, thankfully with opposite age group.

I would recommend keeping a diary! Ours really helped when we were going through assessments with Dd3.

Write in it when she has issues which seem outside of normal to you, what caused the issues and how you dealt with it!

Also look up the triad of impairments and see if you think they match your Dd, if they do then jot down real examples of her difficulties where they fall into the triad!

Sensory is separate so print off a sensory profile checklist and tick off and give examples for how she fits it!!

Dont give up, it can take a long time to get the correct diagnosis. Pace yourself and gather lots of evidence.

Good luck

I took diary before, a sensory checklist and a talking mat we'd done about what worried her most. All were ignored! I'll start another diary as honestly this weeks been awful. Just googled triad of impairments again and can have examples in each already. Think I need to take heed of your name Ineedmorepatience!

This is obviously causing her great distress (and you too). I got tired of being fobbed off a while ago and went for a second opinion. WE got it, and great support ever since. We recently have also had to change paediatricians. There are many professionals out there with different perspectives on what is a problem and what isn't.

As I said we had a problem, and the paediatrician wouldn't refer to CAMHS. So I went to my GP, and got them to refer straight to CAMHS despite the paediatrician. I have, in a roundabout way, been told I've done the right thing by CAMHS and they've only seen DS once!

This is second time round for us DS1 dx well established, now DS2. It's hard work, but you are your DC's hope and you are obviously doing your best for them. Stick to what you think. You know your child.