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HELP! Does my DD have a disorder or am I overthinking?!!

(15 Posts)
monkeydoesmonkeydo Sun 31-Jul-16 19:10:54

This is a long one, you may need a cuppa.

DD is 4 (5 middle of Aug) and since the day she was born I knew she was, how do I put this? Special. She is my second DD (out of 3) and only 18 months between the older two.

It all started when she was around ten months old. Her imagination was amazing! She couldn't speak but would play by herself with her dolls for hours. Never interested in TV like older DD. She was so clever too. You could have a pile of 30 shoes, mine, hers, random ones, ask her to find her blue ones and she would be able to pick out exactly what we asked for. Then she turned two and her behaviour was terrible! She was a bad biter, tantrums the lot. But she still couldn't speak. We had a child development test done and they said she was too intelligent and was angry because she couldn't use her voice.

Fast forward to years. She developed bad speech (a strong lisp and words are never said correctly although We can all understand her) she developed selective mutism, she is a very slow learner and she has developed some "traits".
Licking her lips until they bleed.
A noise like a single hum. Literally just "hmm" which is does over and over all day every day.
She has night terrors which can be anything from 1-6 times a night lasting 5 mins-4 hours ish.
Her coordination is terrible. Never known a child so clumsy.

She is so loving and caring and her imagination is still unreal. She has reached "that age" where she drives me crazy with her attitude but it's not too bad. I have seen GPs paediatricians and sleep clinics and I am getting nowhere.

I feel helpless and lost and like I must have done something that's caused this.

Am I overreacting or is there something wrong with her or just me?!

HonniBee Sun 31-Jul-16 19:13:42

Does she wring her hands at all?

MoMandaS Sun 31-Jul-16 19:22:05

Certainly it's nothing you've done! And I doubt you're overreacting. Has anybody you've seen suggested there might be a disorder of any kind? How do they explain her 'traits'?

monkeydoesmonkeydo Sun 31-Jul-16 19:32:28

They say they are all coincidence! Which it may well be and that is amazing if it is! It means she may or may not grow out of it. But they aren't even looking into any of it.
It's like they think I'm imagining it. I'm her mum and I know there is something! I don't believe she does anything with her hand,
Not that I've noticed anyhow!

HonniBee Sun 31-Jul-16 19:40:47

Hmmmm... Thought it sounded a bit like my niece but maybe not.

It sounds like a lot to deal with, and frustrating that you can't get help. Is it worth starting to note the things that concern you down so you can build a clear picture of the problem?

Sorry - can't be of much help, but like momanda said- it is certainly not your fault!!

hazeyjane Sun 31-Jul-16 19:44:27

Does she go to preschool? Has anyone said anything there?

Strangely she sounds very similar to me when I was little!

I was selectively mute at a similar age
I had a tic which involved licking my lower lip, leaving abig red sore underneath
I was (and am) unbelievably clumsy
I used to make a weird humming whistle at the back of my throat, my mum says I would do it throughout a meal, until my dad exploded, but I still wouldn't stop!
I had awful night terrors, and couldn't sleep unless I had a radio on

I also used to have absences, would sometimes 'shut down' and have always struggled with left and right, hand/eye coordination and getting lost (I have no sense of direction) I struggle with organising my brain (exams are a nightmare!)

I have never been diagnosed with anything, but in adulthood have wondered whether I am dyspraxic
Curious about the handwringing, because this is something that me and my mum do!

Mozismyhero Sun 31-Jul-16 19:47:42

Sounds a bit like my friend's boy. She fought and fought and fought for support for years. Got nowhere for a long time. Eventually, she asked for him to be assessed via school for a statement. She had to do all this as her Senco was useless. He got support in school and, 2 years down the line (he's 6 now) he was diagnosed with autism. He is not at all atypical for autism and doesn't tick many boxes so it made it so much harder to get a diagnosis.

You could try getting in touch with autistic society for advice. Parent partnership where good with my friend. Also afasic (Google them- they are for speech and language disorders).

Good luck. X

HonniBee Sun 31-Jul-16 19:48:34

It's a rare gene abnormality- you'd know if you have it and hand wringing is the typical sign.

monkeydoesmonkeydo Sun 31-Jul-16 19:51:58

Hazey it's like you are describing her, dyspraxia has been mentioned briefly by a HV but paeds won't do any physical tests until she is in yr1 (sept) her teachers were incredibly supportive this year and she grew extremely attached to one of them. Cried the whole night before transition day, the day she met her new teacher, because she was so upset
About leaving said teacher! I have everything written down, every letter from every organisation I have involved in this. I have made complaints to my local hospital; which has ended up with a referral to John Radcliffe sleep clinic wohoo!
I will keep pushing; I am her mum and her voice and I WILL get what she needs and deserves.
These answers are a lifeline right now. Not having them could be jeopardising her childhood, her academic life.

Sorry... Just very passionate about making her and my voice heard!

hazeyjane Sun 31-Jul-16 20:01:02

It did give me quite a jolt reading about your dd!

I was lucky in that I was bright, had a big imagination, and was very good at art. I did OK at school and found that drama group and singing helped me hugely.

You sound as though you are doing a brilliant job of supporting her, and fighting for support from others. My Ds is disabled, he has no diagnosis, but has an EHCP, is in a special needs unit in a ms school and has SALT, OT, Physio etc - support should be given as per need, not diagnosis.

I hope you get some answers for your dd.

monkeydoesmonkeydo Sun 31-Jul-16 20:04:56

I agree it she shouldn't have to suffer with no help just because we haven't been given a label for her.
Thanks for support everyone. Think I needed someone to tell me I'm going in the right direction and all these tips are even better.

MoMandaS Sun 31-Jul-16 20:05:07

I wondered about dyspraxia but also Sensory Processing Disorder. Have you considered that? Here in the UK it is considered part of autism spectrum disorder but in the US it's a stand-alone diagnosis. I have recently read a book about Asperger's Syndrome which said that it is often not picked up in girls because it presents differently and girls tend to be very good at 'masking'. The Out of Sync Child is a good book about Sensory Processing Disorder if you have a Google of that and want to find out more.

LynetteScavo Sun 31-Jul-16 20:07:26

Firstly, this is obviously nothing to do with your parenting, and secondly, there is obviously something going on good to see you wont be fobbed off! She's very lucky to have you as her mum.

It could be that she has several different issues. I put my DS in front of 7 psychologists and asked their wasn't until the 8th psychologist when I said "I want a diagnosis of x or y" until we actually got anywhere.

MoMandaS Sun 31-Jul-16 20:08:44

As Hazey says, you don't need a firm diagnosis to get support - you just need someone to take you seriously. My DS1 (3) probably has ASD but for now has been given a diagnosis of "additional needs". As a result we are getting a lot of support for him which so far is really helping.

monkeydoesmonkeydo Sun 31-Jul-16 20:14:29

MomandaS I will have a google tonight. I've not heard of this before!

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