Autism and now possibly Sensory processing disorder

[Eoz]

I really do not know where to start.All I want to do is cry

Finally after 8 long months someone has listened and realised my little girl is struggling with life.

I had a baby this year and the health visitor came out to see him but soon noticed Abi was non speaking,in a world of her own and very small for her age.All of which I have pointed out to people before.

She started having very bad tantrums a while back.She hurts herself to the point she draws blood or head butts the walls or floor.She also gets angry and smacks herself in the face over and over.She is very particular with the dvds and spends hours pulling them out,lining them up and putting them all back.She is very sensitive with noise and also hates attention being drawn to her.Ie if i say well done after she spoke a word she collpases in a heap screaming

She only says 4 words.2 of which she now says over and over.She barely eats and has lost almost 3kg in 6 months.She has gone down a size in nappys and clothes.She sleeps lot and spends some days just rolling on the floor.She gets very angry and slaps herself when shes hungry,cold or in pain.I never know which it is

I can not leave her alone for long as she gets up to all sorts.Her new one is smacking the baby and strangling the kitten.I can't let her toddle in to the garden as she puts all sorts in her mouth.We have to lock the bathroom door as she is forever with her hands down the loo.She also has a habit of shutting herself into a room.She is happy and plays alone but then she gets angry she cant get out but if i open the door ready for her to come out she gets upset i have disturbed her.

She does not play with other children.She just plods along in her bubble.She has 3 older brothers and sisters she rarely plays with them unless its just one of them alone.

I tried taking her to the childrens centre to socialise her but this caused all manner of problems.A little boy took her car and she lost control.Unknown to me a play leader saw this and asked a early years sen inclusion teacher to get involved.(Today I got a letter saying they are taking her on and have appointed a support worker for her )

i recieved a letter inviting me to special needs group where Abi could play with children just like her.the difference was amazing.She played alone but enjoyed it and even said 2 words

We have since started speech therapy and have been invited to a group for the next 6 weeeks doing a course called play with words.after this they will try a different approach with her.

As she is so under weight and in general is a tired,pale very uncoordinated little girl the peads have got involved now.

I just feel so overwhelmed by all of this.I have no car at the moment so i am walking every where and getting buses.Sometimes Abi is ok sometimes it causes hell so i just go home and we miss appts.I tried a taxi but she played up badly as she wasn't in a seat.

I have since been told to apply for DLA so i can get a car on the road again .It will help us all in so many different ways.I can take her to woods to play.Take her to more groups aimed at her needs.

Life is so hard at the moment with all of this and i am waiting for an op.Also my other kids play up as Abi gets that extra bit of attention so the house is forever in uproar.

Can any one advise me what to do to get a break,support etc.I have no family and no one ever takes the kids to give us all a rest.For the first time in my life i have had to go on anti d's just to hold it all together.

Will DLA think I am playing on it or do I have a strong enough case?

How much help does a SEN teacher give you?

Thanks for listening x

 

[FEDup1981]

Hey honey

Aww bless lil doodles, and you. Sounds like a nightmare every day for you. SOunds like the speech therapy class and play group thing are good. Lets just hope they bring improvements.

As for DLA - apply!!!! But get help to fill in the forms, the CAB can help. But you may have a wait so make an app ASAP. Get ringing up for the forms. DLA will probably turn u down, they do nearly everyone, but appeal. Plus if you can - get a statement from ur docs, consultant, speech therapist - anyone and everyone and put it in with the claim to support it. If they see that ur getting help and theres people to back it up then ur more likely to get the money.

I dont know what an SEN teacher is tbh.

Anyway, youre doing a great job with everything youve got on. And you must take care of yourself too. Always here for you hun x

 

[FEDup1981]

And omg ashton is over 3m old!!! wow!

 

[Eoz]

Hey honey

Aww bless lil doodles, and you. Sounds like a nightmare every day for you. SOunds like the speech therapy class and play group thing are good. Lets just hope they bring improvements.

As for DLA - apply!!!! But get help to fill in the forms, the CAB can help. But you may have a wait so make an app ASAP. Get ringing up for the forms. DLA will probably turn u down, they do nearly everyone, but appeal. Plus if you can - get a statement from ur docs, consultant, speech therapist - anyone and everyone and put it in with the claim to support it. If they see that ur getting help and theres people to back it up then ur more likely to get the money.

I dont know what an SEN teacher is tbh.

Anyway, youre doing a great job with everything youve got on. And you must take care of yourself too. Always here for you hun x

Thank you sweetheart.Life is so hard at the moment.Will explain more when i can.But today i have been a mess.Abi is so hard to look after.Ady has been in bed poorly and i feel so flustered.I chose to have my kids i know but that extra help would be fab.I cant tell you how many times abi got upset today

Yes he is 3 months now so sad its gone so quick x

 

[luvbunsazzle]

awwww hunni, firstly the biggest hug ever.
Life can be so cruel sometimes, and hurts the most precious of them all.
Doodles is an amazing gorgeous little princess, and answers will come your way, and she will make everyone even more proud than they already are.
Take a day at a time, a minute by a minute an hour by an hour.
Keep a diary of everything, even if it doesnt seem like anything, look for patterns in all her behaviour, triggers are such a good eye opener to what could be going on.
Speak to as many people as you can, join as many groups designed to offer help and support, everyone there will be in the same boat and offer as much support as needed.
1-1 time with mummy is always good, but then incorpatre this with the other children too, so they dont get too jealous, talk to them all about Doodles and her problems, tell them "mummy needs help" no one wants to see you suffer, least of all your own family babe.
Food wise, find food that she does enjoy, and make as much as she will eat, but incoparte more substance foods, little bits at a time, always offering the more smoother option aswel, make food fun, try and get her involved as much as possible.
Try and start a routine with her, "you wake in the morning, you have a wash and get changed, you help prepare breakfast, you eat breakfast, you help wash up, you do an activity" ETC routine and schedule but not time is key, never put any time scales on anything, never say you will do it in 5 minutes, as 5 minutes may never come..
BIG BIG HUGS xxx

 

[Eoz]

Thanks Sarah it all makes perfect sense but i worry as she is so unresponsive does she get what i am asking of her? x

 

[luvbunsazzle]

I think the earliest you start with her the better, little steps, but routine is key.
Communication wise, maybe a pec's file might come in handy.

 

[Newt]

definatly apply for DLA hun, you are entitled and tell them everythuing that she does, they wont think you are playing on it, as I said you are entitled. As for a break, your hv may be able to help with that. I am glad you got invervention early, it does make a huge difference. Try storyboarding your planned routine to her and see if that helps. Mummies awake now, now we are going to get dressed, then we are going to have breakfast, then we are going out to catch a bus, then we are going to playgrou.....etc, and continue throughout the day, knocking off things as you are completing them. x

 

[Eoz]

Aww thanks newt.make it fun for her.

Sarah I have heard of Pecs I like the idea of that x

 

[Midnight_Fairy]

Hi, we get higher rate and the change in my life is amazing, just the little bits to help. Definitly apply. My son has ASD. Hugs x

 

[velvetina]

Hi hun,

Sorry you are having such a hard time at the moment, I can see why you must feel so overwhelmed at the moment.

I didn't see how old your little one was, but without a shadow of doubt apply for dla and don't be put off by the length of it, if you need any help just ask. You could then also be eligible for carers allowance once this has been awarded. Is your daughter being assessed for a diagnosis as well? Also, if you claim child tax credit this will also increase once awarded dla.

I would speak with the support worker about asking for some respite care and also to the speech and language therapist about PECS. How restricted is her diet hun? Does she have any bowel issues? I only ask because of the weight loss mentioned.

Finally please don't be afraid to ask for help, push for appointments or places or to have your daughter assessed. Some borough's are really good whilst with others you have to constantly make a nuisance of yourself (which is not a bad thing honest).

to you hun. x

 

[helen1234]

no proper advice i'm no real expert, think you need to get a proper diagnosis before you even start thinking about dla, because the wrong impression will be given.

they wont jump to diagnose her autism its a very hard thing because alot of traits can be normal 2 yrs old behaviour, alot of what you say is exactly what rhys is like, rhys even stacks food, its all he ever really does cars, blocks, toys i currently have a row of soldiers on my window sill perfectly facing forward. and omg you take a toy off him he squeals high pitched and flings himself back. also its fact that until after two yrs old babies live in their own bubble its all about them, me and i. i'm not saying she's not autistic but that's the reason they delay diagnosis hun because they cant be too sure sometimes .
i wouldnt mention dla to docs it will just confuse them of your intention of forcing a diagnosis. i went 5 yrs before i knew i could claim it the thought never crossed my mind.

 

[Midnight_Fairy]

no proper advice i'm no real expert, think you need to get a proper diagnosis before you even start thinking about dla, because the wrong impression will be given.

they wont jump to diagnose her autism its a very hard thing because alot of traits can be normal 2 yrs old behaviour, alot of what you say is exactly what rhys is like, rhys even stacks food, its all he ever really does cars, blocks, toys i currently have a row of soldiers on my window sill perfectly facing forward. and omg you take a toy off him he squeals high pitched and flings himself back. also its fact that until after two yrs old babies live in their own bubble its all about them, me and i. i'm not saying she's not autistic but that's the reason they delay diagnosis hun because they cant be too sure sometimes .
i wouldnt mention dla to docs it will just confuse them of your intention of forcing a diagnosis. i went 5 yrs before i knew i could claim it the thought never crossed my mind.

I do agree with this. Its very hard to get the diagnosis, took us almost 3 yrs. We didnt apply for dla untill a while after the diagnosis either xx

 

[Eoz]

see i'm reluctant to claim it but i need to get transport for her again.i've lived with out it so its not a biggy.all i wat is to get somewhere with my little girl.why does she behave this way?

Helen with Rhys will you look into further?Just for me I have a gut instinct something is right with Abi x

 

[sophxx]

i would still apply for dla if i was you could you chat to your gp or surpport worker about them backing your claim?

my cousin has speacil needs she was brain damaged at birth she also has autism my aunt and uncle found the only way they could hand her ad keep a calm ish house was to put a routine in place she knew exactly what would be happening it really changed there life and her life

xx

 

[helen1234]

it's so frustrating I went through it with Rosie, and because she had epilepsy she was looked at all the time with docs, it was the opposite to you they kept diagnosing Rosie ADHD and in the end I said ok it's ADHD then a yr later and a few stern routines and rules it's not ADHD.

I won't be getting Rhys checked out cos stacking toys sorting toys is very normal for a 22 month old and it's how they learn to focus on thinking about playing babycenter website have a good explanation on it,
He only says a few words, oh no, bye, woof woof,
I think you've been told that many things by so many different doctors and professionals it's confusing you, I think you need to take a step back dnt google or read up on autism or look at what other autistic parents say and have a look at what the average 23 month old behaviour is like it's so so so confusing, take advice on how to handle the behaviour the extreme head butting etc and leave the pushing for diagnosis for a bit, and I would lay off dla she 2 and if it is autism she will have this for life, if it's not autism, and I hope it's not, shell grow out of it
Xx

 

[Eoz]

i would still apply for dla if i was you could you chat to your gp or surpport worker about them backing your claim?

my cousin has speacil needs she was brain damaged at birth she also has autism my aunt and uncle found the only way they could hand her ad keep a calm ish house was to put a routine in place she knew exactly what would be happening it really changed there life and her life

xx

This is something i will be doing.Every Sunday I will plan the week ahead ie drs,swimming,play sessions and time at home and try to follow it.I think it will help everyone and i wont feel so out of control x

it's so frustrating I went through it with Rosie, and because she had epilepsy she was looked at all the time with docs, it was the opposite to you they kept diagnosing Rosie ADHD and in the end I said ok it's ADHD then a yr later and a few stern routines and rules it's not ADHD.

I won't be getting Rhys checked out cos stacking toys sorting toys is very normal for a 22 month old and it's how they learn to focus on thinking about playing babycenter website have a good explanation on it,
He only says a few words, oh no, bye, woof woof,
I think you've been told that many things by so many different doctors and professionals it's confusing you, I think you need to take a step back dnt google or read up on autism or look at what other autistic parents say and have a look at what the average 23 month old behaviour is like it's so so so confusing, take advice on how to handle the behaviour the extreme head butting etc and leave the pushing for diagnosis for a bit, and I would lay off dla she 2 and if it is autism she will have this for life, if it's not autism, and I hope it's not, shell grow out of it
Xx

See I am sat on the fence here.All my kids have grown up differently and I have one with dsylexia and dyspraxia so i know how hard it is to get it recognised but with Abi something isnt clicking.All the processionals have said speech,behaviour problems and one has said autism.Everyone points in that direction.I refuse to google it drives me nuts lol

People do say so so and so does this and such and such needs that but I take it all on board and just go with the flow.

I will not change Abi's life I treat her the same as the others.I will not offer her soft food because that is all she eats.She gets what she is given and gets a little bit more of my time when the others are at school and I am pleased that she has early years involved.,2 low key play sessions and also her speech therapy.I was told if in 3 months (6 in all) no progress has been made then they well go further.She is special to us and is a different child but no way will i draw attention to that in front of her.I just need to find a way to handle it all better.So many have got involved which has surprised me when I have only ever spoke to my HV about my concerns.I'm glad though and i do help with a little help she'll flourish and be a happy little girl

Helen you sound amazing and really are a fab mum.Thanks for your advise darling

 

[helen1234]

I know what you mean, it's an accumulation of things she does isn't it and extreme behaviour, is she starting playgroup when she's 2 1/2, they'll soon pick up if she stands out, it might be that she's just too clever for her own good and knows exactly how to push your buttons.

Dla is always a hard one, you have to prove that she needs more help in washing toileting and supervision, toileting doesn't count she's in nappies, 2 ye olds need 24/7 care anyway and all 2 yr olds have to be supervised when bathing, they won't rake into the fact that you need your car fixing into consideration,

I got high care for Rosie because she still wets the bed at 16 shhhhh don't tell her lol, because she sleeps deeply and she gets up constantly in the night with bad dreams her brain doesn't switch off and she's so clumsy and forgetful she can only have showers no baths allowed for obv reasons, and I have to take her everywhere or she has to catch a bus or have someone with her. That's why I get low mobility because the average 16 yr old doesn't need this help, I put down her paediatrician and her doctor down on the form I didn't ask I just applied, apply hub but I wouldn't bank on getting it they're pretty strict xxx

 

[Midnight_Fairy]

If you have the gut instinct I would go along to more assements. Its not easy to get a diagnosis so I dont believe autism could be wrongly diagnosed. It took almost 3yrs to diagnose my son.l It involved them seeing him without me in different situations etc etc, very complex. My dla claim also took 23 weeks and they needed endless information from various people. TBH, If he didnt need higher rate, I wouldnt have bothered with dla for all the stress it put me under x

 

[lollylou1]

i have worked very closely with special needs more more closely with autistic children for many years before having Annabelle, i am very shocked that your even getting any support at all as where i live and where i previously lived they wouldnt bat an eyelid until the child is 3 as like someone else said so many symptoms of autism can be misunderstood with normal behaviour of a child of that age, thats not only with autism they wont do anything but any special need unless the child have been born with a specific condition such as maybe downs etc no help will be given!
as for dla i wouldnt have thought you would get far until u get a firm diagnosis because as it stands there is no label so until then i think u will be fighting a losing battle!

good luck hunny and i hope u get it sorted soon

Lou
xxx