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Hi, New To Asd And Just Coming To Grips With An Ehcp, Also Like Gin..

EHCPAspergers Dyspraxia Anxiety Disorder CAMHS Autism Self Modulation

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#1 Freyalissa

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Posted 12 January 2016 - 12:19 PM

Hi

 

I'm new to the site, and a touch nervous about using Forums as I find it hard to put on paper (so to speak!) stuff related to our own little Autistic World! But I'll give it a bash:)

 

I'm Mum to a gorgeous 9 year old little Dude, (LD) and married to a nearly as gorgeous Dutchman. Our little Dude is diagnosed with Autism (specifically high functioning) Anxiety Complex, and Dyspraxia, he is also diagnosed with Dyslexia.

 

LD currently goes to a very small mainstream school (36 pupils) but it is anticipated he will move to specialist provision when he is 11, I am not sure what to do about this...we are being advised it will be necessary, but I'm not entirely convinced.

 

We are currently awaiting the outcome of an Assessment for an EHCP, which is due this week or possibly next, all the information and advice we have been given is that we will be allocated 25 hours per week. It's taken a lot of fight to get to this point, and if they refuse us I may have to go and sit in the booze aisle in Tesco and throw a tantrum!

 

As our LD is growing up (9 going on 19!) we are finding it more and more challenging to get through day to day life. He is an emotional rollercoaster and some days I cope better than others. Hubby works away a lot in the Aviation Industry so whilst terrifically supportive, its mostly me that bears the brunt of the meltdowns etc. 

 

It has been suggested that i have still not come to terms with the fact our LD is Autistic, I suspect this may be true but find it a very difficult thing to come to terms with?!

 

I think I find the Sensory side of LD more difficult than anything else, does anyone else have a very "sensory" child? Just getting dressed some days can be a mountain to climb. 

 

I also worry that I am a shit mother, (am I allowed to swear? apologies if not, please don't ban me!) as I never feel like I am getting it all right. Hubby is far more relaxed, which I suspect is because the apple didnt fall far from the tree!

 

Well that's about it for now, not sure if this is how you are supposed to post as totally new to forums:) 

 

I'm off to bath the dog now as she insisted in rolling in fox poo this morning, should of got a goldfish..

 

 



#2 mad cat lady

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Posted 12 January 2016 - 05:04 PM

Welcome to the forum
It sounds as if you have your hands full, I also have a high functioning,highly anxious AS son with dyslexia, we were in a pretty similar place to you a few years ago but the school system managed to convince us that with good support he could remain in mainstream, unfortunately the chance to secondary school was too much for him and he had a breakdown from which he has never really recovered from, we have had to fight every step of the way since and the people on this forum have been a real help, not only with practical advice, but with emotional support when it has all become too much.

You will have more fights to get your son the help he needs and the councils are very good at saying there is no money but let me pass on something I heard at a seminar I attended . There were many of us in the audience who said that we were trying to understand the council did not have the money to give the support we needed and the answer from the professor speaking was "it is so nice of you to sacrifice your children for the benefit of xyz council, it is only by pushing the council who will then push government that the situation will improve"

Hope your dog now smells a bit better now, I have cats who tend not to roll in stuff, just bring us presents and have had dead/alive mice in my boots more than once

#3 tracky2

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Posted 12 January 2016 - 05:15 PM

Hi Freyalissa

 

Welcome, I am relitivley new to this sight aswell.  However in the past couple of months I have been welcomed to this sight by supportive and very knowledgable people who make this very difficult journey easier.

 

I have a 7 year old DS who I believe to have ASD and suffers High anxiety,  the school suspects Dyspraxia however, we are only at the very first stages of our Diagnosis journey.  Who knows what if anything my DS will be DX with at the end of this?

 

The main thing I guess for me is to feel included and not so alone.   Someone is always their to help when you need it most because one of us will hopefully have gone through something similar in our own journey.

 

I am not sure about swearing, although i assume its not used as i havent seen any in posts  :)

 

I feel like a don't deal particuarly well with my own son most of the time but just remember your parenting is not the thing to blame here.

 

L can have sensory difficulties with some textures, mainly food (limited menu) and clothing, some noises.  L I have learned only likes wearing soft clothes like joggies and does not like stripes, i have to still help dress or we would never get out the door.  He struggles with temprature and has to have the fan on in his room along with soft lighting, music and all his blankies etc.  Shopping centres and restuarants are over stimulating for him and he cant stay still.

 

It must be more difficult with your hubby away.

 

Hope this helps  :)



#4 miami girl

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Posted 12 January 2016 - 05:43 PM

Hi and Welcome to the forum.

 

I am a Mum to 6 kids, the youngest is 9 and he got his dx of severe autism at 3 1/4.

 

Feeling like a crap Mum I think comes part and parcel so dont take it personally.

 

dont pay too much attention to the council and they not go the money its amazing how quickly they can find it if needs be.

 

Look forward to chatting to you.



#5 Eggman

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Posted 13 January 2016 - 10:09 AM

Hi there and welcome.

 

I have a 12 year old who moved from a mainstream Primary to a specialist independent school. We had to get a Barrister and solicitor involved before County backed down.

 

It is absolutely the best place for him and I can't imagine how he would cope in mainstream given in particular his processing difficulties..

 

He is also very sensory and I have this morning 'given up' on trying to get him to wear his school jumper. He came in from school yesterday in a terrible mood and I wondered what on earth had happened. He then flung his jumper off and jumped up and down on it on the floor!

 

More arguments this morning trying to get him to wear it as it is getting very cold outside but instead he has agreed to wear his school blazer and coat over it.

 

I know for a fact once he gets to school the coat will be scrunched up and put in his school bag and he will not wear it :rolleyes:

 

Drives you insane doesn't it!



#6 bluewater

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Posted 13 January 2016 - 11:28 AM

Hi Freyalissa,

 

Welcome too. This site has been a really great support to me (especially as we are 1.5 hours from the nearest existing support group). I have 3 children, the oldest has aspergers, the youngest possibly.

 

My eldest moved from our small primary (40 pupils) , to our mainstream secondary 2.5 years ago, and he has refused to attend on and off for nearly two of those years (currently not attending despite our best efforts...). Getting help has been and still is very difficult, and so far not much use.

 

I question my parenting a lot - I think it comes with the territory of dealing with difficult situations.

 

I hope you find lots of help here,



#7 Maverick

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Posted 20 January 2016 - 07:59 PM

Hi nice to meet you. :-)

My boy is 13 with Aspergers. He went from 400 pupil primary school to 600 pupil middle school and this was a hard transition. For your boy to stay in mainstream and move from a tiny school to one much bigger is going to take enormous strength so take care of yourself if u decide on that route.

We have loads of sensory issues here ranging from yelling in pain if his nails are cut to gagging at the smell of roast beef!!! Sensory challenges are part of daily life.

Don't ever think you are a bad parent. Parents of special children like ours are the strongest, bravest, most tolerant, compassionate, funny people ever .... and we never give up! Hugs x



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Also tagged with one or more of these keywords: EHCPAspergers, Dyspraxia, Anxiety Disorder, CAMHS, Autism, Self Modulation

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