Autism and now possibly Sensory processing disorder

[Midnight_Fairy]

^ I had quite alot of support before my son was diagnosed. Sometimes even more than I do now for some reason x

 

[Eoz]

i think they want to help nd do so much once the diagnosis is in they step away which is wrong x

 

[baby.love]

I didnt apply for DLA until my son was fully diagnosed this July (aged 4 and a half)...

We now recieve highest rate DLA and from December when he turns 5 we will get that plus low rate mobility, Getting a car for ASD is from what i was told incredibly rare.. Highest rate mobility (which you need to qualify for a car) is generally only given to those who physically cannot walk etc.

Also when filling the forms see if there is anywhere near you that offers help filling them in, they really are a minefield and so hard to do alone.

Good luck with it all, its a long road getting an ASD diagnosis but with the right help & support its not as scary as it seems

 

[Eoz]

I dont want it just for the car but meaning it'll free up my money to sort a car and the dla to get Abi some more play sessions,toys to suit her needs and even possibly a few hrs in a nursery to see how she gets on socially.

Thank you for all the replys xxxxxxxx

 

[Twinminator]

Wow. Who'd have thought it'd be such a ruddy fight

Having read your full description in the first post, it does sound like you have real real cause to suspect autism, and some of it as triggered my memory for things Lauren does - the shutting herself in rooms to be alone, she doesn't like a lot of fuss and noise, plays like she's in a bubble ignoring everything else.
But she's a good eater, in that she instinctively opens her mouth like a baby bird when food is offered - always pulls a face like I'm feeding her cowdung, but always accepts it, lol! She's a strong girl, a very strong girl!, (part of the wider problem) yet her sister is a lot faster on her feet...
AND, if in the right frame of mind, one on one, she will giggle when I tickle her or make a certain noise she finds amusing - does that negate an autistic diagnosis if she can do that? It's got to be when she's in the mood though, mostly if I try to hug or tickle her, she pushes me off.
That's the thing, there are flashes of warmth and social awareness, but rarely, and only with me. I think that's why I have shrugged it off a bit til now. I wish there was more realistic advice on the net about it, so many questions, so many different answers, I only want one!
Well hunny, looks like you and me might be sailing in a similar boat, here's hoping you get to where you need to get for little Abi. Will keeplooking in on you, and will keep you posted on anything that happens this end too xxx

 

[Jem]

Just popping in to send hugs my darlin and hope you're ok? xxx

 

[Eoz]

i'm surviving Jem with a heavy heart though.Thanks for asking xxx

How are you xxxxxxxxxxx

 

[Twinminator]

How did you get on with the M-CHAT hunny? xxx

 

[Eoz]

i haven't looked.Abi was up all evening and most of the night due to bloody fireworks.I'll go look now thank you xxxxxxxxxxxxxxx

 

[Eoz]

had a look and its very confusing.some answers say yes some no some sometimes.im on the fence with it tbh x

 

[Twinminator]

It's ever so basic isn't it? Doesn't address issues such as repetitive behaviours for instance. It's largely designed to pick up the extremely autistic I reckon. I mean, if your child ticked every box on that, you wouldn't neeeed a form to tell you, it'd be blatantly and immediately obvious to everybody and you'd be fast-tracked to professional support.

Thanks for the friend request BTW xxx

 

[Eoz]

I just feel so useless.I know she has troubles but is it autism or is it just a slow child.Some days are great some are so bad i want to cry x

 

[Twinminator]

I wish I were further down the road with this process so I had some wise words for you hun

I just rung up the autism org, 0845 070 4004, open 10am - 4pm Mon-Fri, and they were nice enough. Have convinced me to go to GP anyhoo.
(don't be put off by the grumpy girl who answers the phone, she's not an adviser, she just puts you through lol)

And remember, you're not a first time mum, your instinct isn't scare-mongering, you know your daughter, you just need a little more accurate information that's all. Try not to let it get you down easier said than done i know, but at least you're the kind of mummy who gives a damn and isn't in denial about potential issues, you want what's best for your baby and that is something to be proud of xxxxx

 

[Eoz]

Aww thank you darling.As for you please push it.Like you say you just know when something isnt right.

As you said I have 4 other kids.3 are normal in their own way.One is dyslexic and Abi i just know deep down something does not click : (

Because I am a mum of many they have listened but what saddens me is if i were a 1st time mum i'd have been pushed away and told it was age and to bide my time.

Please keep in touch i'd love to follow your journey.

Do you have facebook?

 

[Twinminator]

I know what you mean, I already feel a bit cheated by my MW who completely poo-poo'd my queries about Lauren's speech, because she must have mothers day-in-day-out asking her about it, but that doesn't mean that she should sweepingly dismiss every language worry, I thought long and hard before i called her round because I knew that it is such a common (and admittedly, often unfounded) concern. Now I feel like I've lost that relationship with her where I can ask her about anything.

I will of course keep in touch, but i don't do Facebook, I de-registered as I had teacher friends, pub friends, family friends, and found I was having to censor myself as I don't necessarily want all those people knowing all my business iykwim. But pm me anytime, I am on B&B daily on&off xxx

 

[Eoz]

Well Abi had her 1st appointment at hospital today and they agree with me Abi is in need of more help and care than a average 2 yr old.Now the hard work starts.blood tests,dieticians, physiologists,community peaditricians and lots of play therapy.However the interesting thing is they think her oral motor skills are less than average hence the eating habits and speech delay.All things we can work on.she has to have her thyroid tested as well as anaemia.her weight is a concern but not majorly as she is just under the 9th centile.They also feel my complications in pregnancy could have contributed to her slow development.

They are still on the fence with Autism but the Dr did say it is such a broad spectrum they can never say.But they will asses her for it 1st then go from there x

 

[Twinminator]

Wow. If that were me, I'd be so overwhelmed... the fighting for it is one thing - the ball rolling so suddenly and so quickly is quite another... it would/will sooo freak me out Makes it more real than just the struggle in your own four walls.

Thanks for the message!, I'm okay, taking a trip to my friend's for a few days tomorrow but i'm dreading it because Lauren was difficult last time we went and that was when she'd only just first discovered climbing. Now she needs to be in a completely safe, ground-level environment otherwise she will not accept that she must not climb - like a doberman with a kitten, she just 'turns' and will NOT give up without a physical fight. Totally obsessed. With no 'props' or temptations, she's fine, but their dining furniture is in their lounge so.... dunno how we're going to get round that one

 

[Midnight_Fairy]

Hugs, if anyone ever needs a chat just PM me. I am no expert but just personal experience xx

 

[Eoz]

Thank you darling.means alot xx

Abi goes to a special needs class on a Thursday and I love it,She copes fairly way and enjoys the smaller group.I enjoy it for the fact that I get to chat to other Mums who have expiriences and who are learning as well.

my family and some friends don't give a shite think its all in my head. We never have any breaks or support so chatting to people who are going through the same thing is lovely.

A little update from me.

Abi saw another lady this week who specialises in younger children with developmental problems and after a long chat and her playing with Abi we may possibly have found whats wrong.

She thinks as does Abi's early years inclusion teacher that Abi suffers with sensory issues,ie hates being touched and cant understand some tastes and noises.

It's possibly Sensory Processing Disorder.After reading about this I think we may have hit the nail on the head.Autism isnt being ruled out but as the days go on I feel its more SPD than Autism.it sums her up perfectly.

There is a book called 'The Out Of Sync Child' which i'm going to buy and this explains so much about this condition.It may be worth you ladies trying to get a copy as it covers a few things on Autism as well as SPD is a form of Autism.

Hugs and thanks to you all xxxxxxxxxxxxxxx

https://www.sensory-processing-disorder.com/

https://www.out-of-sync-child.com/

 

[Eoz]

Double post x