Are these emotions normal

Hi some one,

i have just noticed how late in replying to this I am, so sorry :-( I hadn't had any email saying I'd had replies to this doh!!!

well I want to thank you for your kind words, my daughter is a real inspiration and we share some real funny moments sadly she don't always understand what she said and why it was so funny yet she is learning to ask these days with the help of comic strip conversations rather than melting down due to thinking people are laughing at her.

:-)

Sandpyper,

firstly I apologise for not having replied sooner, I have been informed by a few other parents that there children all seemed to suffer with hearing problems prior to being sent for assessment, I do hope the assessment goes smoothly for your granddaughter.

Hi Ade3004,

the poem is lovely, isn't hindsight a wonderful thing yet at times the worst thing ever, show such a great understanding of who your son is and this will be beneficial for your relationship.

keep up the good work, :-)

 Calamity 29

Have just joined the community and I note your ref to hearing proplems ...our grandaughter suffered badly with glue ear when she was a baby and it resulted in hearing loss and impaired speech ...ended up receiving speech therapy and is now undergoing assesment for possible Autism ..... ?????????

My grandaughter is in the process of being assesed by the local NHS unit, she is 14 years old, confirmed to be suffering with ADHD and on medication. The end of the xmas holidays and the attempted return to school has resulted in a week of hell which has affected everyboby, Hysterical and violent behaviour occuring each morning, pleas for help to the SS, have until the police and a local GP put pressure on the SS fallen on deaf ears. all everybody seems to say allow her to calm down, but in the process people are threatened with violence and she trashes her room. The family is at their wits end and can see no resolution to the matter. We can only hope that the unit in the Local Hospital can assist in explaining to the child what the proplem is and assist in getting action that will help the child and see to it she has a safe future. Where do we go from here?

Hi

Having lost my marriage by not accepting my son`s aspergers and then after seeing doctor`s being told actually I am on the spectrum I thought long and hard about his future.

School is very hard - he so wants to fit in. But there is hope. I have worked with scientists for 20 yrs and I`m sure many are on the spectrum. This doesn`t stop them being succesful loving contributing adults and I think it`s so important to relate to your child.

I experienced a lot of what my son is going through, was labelled bright but lazy, naughty, underachieving, doesn`t try to fit in etc etc. To put my thoughts to paper I wrote my son a poem.....I hope you like it: It`s called "I know"

“I know”

I know.

I was once there too.  In the fog of my youth, at the start in the dew,

You want to belong, have your place amongst peers,

A place to feel normal, a place without fears,

But some mock you, some tease, and some hurt you too,

Would they really do this, oh if only they knew,

For you do have a heart  - of gold, not of stone,

So much Love and emotion, `neath soft flesh and bone,

You try so hard to show it, and so to fit in,

Oh how your soul hurts,

Please stop this pain, light and din,

Will it ever change, will you have that close friend?

What will your journey be? Will this hurt mend?

Hush, let me tell you, be proud of who you are,

Hard as it seems now, I know you`ll go far,

You have much light inside you, kindness and love,

Like me you seek answers, high, low and above.

So here`s what I found out, I hope it`s of use,

At least bring you comfort, nothing obtuse…

Real friends will find you,  you need but a few,

Be true to yourself  - they`ll form up a queue,

These real friends will support you, laugh, cry and persist,

Stand strong beside you, as you tred life`s deep mist,

They`ll laugh at your quirkiness, your interests and jokes,

Laugh with you, never at you, and not all will be blokes,

For girls are nice too, they see deeply inside,

They`ll know the real you, there`ll be nowhere to hide,

They`ll see your kindness, your soft gentle ways,

And bond to your shy heart over many long days,

They`ll cherish your loyalty,

Your strength within,

The little things you do, to show your giving,

And when they`re bored of the macho strong boys,

They`ll remember the true you and savour the joys,

And when you look back on those first early years,

All the pain, anger, struggle and all of those tears,

You`ll see others went through it, you really were the same,

Think then of me,  

remember my name,

Remember, I know,

 I really was once there too,

In a much younger time,

 I really was you.

Daddy x

My son is 3.10 yrs old. He only recieved his diagnosis last month. I wasn't prepared for it but was expecting it, if that makes sense. They Kind of told me he was on the spectrum before they gave him the diagnosis, but i suppose i was in denial and didn't let it sink in until the official words came from the doctors mouth.

I have been quite mixed up since then, I was sad for my boys future, but happy he was finally getting some support. I was releaved that there was finally a reason for why he is like he is, but disapointed that he won't just grow out of it. But the main things i felt was confused and overwhelmed. I still don't know what the majority of the abeviation mean and then when i figure out what they mean, I have to figure what they actaully are or do. Then i confuse them. It will sink in over time, I'm sure.

The main thing that is going round in my head lately is, where on the spectrum is he? I believe he is quite low down. Although he does learn, he can type things out with perfect spelling on the computer, won't speak the words though. He can sing a tune, word for word, but replacing the words is a sound similar to the word.

We are very lucky really, compaired to some other families who are having to fight just to get an appropriate education for their kids. Within 2 weeks of him recieving his diagnosis, he had an ILP in place and is awaiting an appointment with the EP. He attends a communication group every week and gets one to one at Nursery. The teachers at his Nursery are brilliant, they are accomodating his needs and keeping me in the loop, which right now, is exactly what i need, i need to know he is doing ok.

I think it is perfectly normal to be all over the place with your emotions at first, it is a huge thing to take on board, something that will affect the rest of your's and your childs life. The key i think is, finding a balance and finding a way that you can just get on with your life, accept that things won't be easy, but remind yourself that your child is worth it, enjoy the moments, life ain't easy at the best of times, its the moments that make it worth while, hold onto to them.

Good luck for the future and keep smiling, even if sometimes its seems like an impossible thing to do :)

Hi Calamity,

Before I took early retirement to spend more time with my DS I was a SENCo in a school. We were told by the LA that children needed to be at least 2 years behind their peers to get a Statement, and so I might have said the same to you as your school's SENCo. However she should at least have an IEP at School Action Plus and the school should be putting in support for her. Have they contacted your local ASD team for advice and support?
Since I retired I have discovered that parents can request Statements. This was not something I came across at school because we always aimed to apply for Statements as soon as it became clear that this was what a child needed, with advice from our Ed Psych and other professionals.

There is an organisation called IPSEA which helps parents make requests for Statutory Assessment, which is what you need first. They have model letters on their website that you can use, and also a telephone advice line. There is also a lot of information on there about the process which leads to the issuing of a Statement.

My son was not Statemented until Year 9. When he was at Primary School I don't think a request would have been successful, but children can be given Statements at any time in their school career.

Calamity29 said:

Hi All who come across this,

life for my daughter hasn't changed as such due to the fact I had already adapted to who she is from gaining valuable insight into her just through observing the things she does however for me I seem to be going through a roller coaster of emotions since my princess was diagnosed asd only a week ago, I always believed my daughters hearing problems to be the reasons behind her special traits.

i feel like I've been told this and that's it your on your own, go get on with it, which is funny as I have brought my daughter up for years now, so is this a normal reaction as a parent to go through so many emotions, denial, loss, feelings of failure and plenty more.

i am so proud of my daughter she is a real inspiration to me and various other family members.

Any feedback would be great

have a great day everybody

hi calamity, i dont have any kids so cant answer from that perspective, but i can say that even with my partner i did feel a bit 'i could/should' have done more BEFORE i knew, but you have to just put that in perspective, HOW could you do that??

let me tell you , you have not failed her, at all, your probably one of the only people to love and accept her for who she actually is, and thats very important . even before you knew you accepted her.

truth is in our soceity is is a case of 'you're on your own, get on with it' but if you have been doing well, which you have, then a diagnosis cant change that

you have done it all this time, a diagnosis only explains WHY , it doesnt change a thing, sadly, if only it were that easy eh! 

thats not to say it doesnt help pr matter in any way, i feel it really does, but it doesnt change the past, or what you do with that diagnosis

you should be proud of yourself too

and have a great day yourself

SENAR'S is Special Education Needs Assessment and Review, they are who you request a statement from, if you contact your local parent partnership they should be able to give you their address.

Bounces school say they have had many autistic kids before (know of one who went their for a few years!) but every child is different., what bounces t/a calls a tantrum I call annoyance that he isn't been acknowledged!! Last week t/a took bounce to the tiolet has dues to his regression he can barely talk anymore and has to be reminded and taken to tiolet quite often has he isnt been given the tools to help communicate (at the moment!) anyhow t/a demanded him to go tiolet one day and he told her no and was shaking his hands and head but she was adamant he had to go anyhow he kicked off cause of this, but she even put him in time out afterwards cause he didnt do what she wanted him to do!!!!

These kind of incidents are very common and I truly dont believe school is fully aware of how to deal with a autistic child, they have (from what they have said previously) had some training which I think should be compulsary for all schools (but is quite sparced!)

Often I have advised them on things that work for Bounce and what doesnt but takes school weeks before I see or hear if they are even gonna listen to me and apply it!! sometimes i dont get told till their is a incident and moans and groans come from them! i'm like told ya so!! but they are very stubborn when it comes to targets etc that are given from myself andoutside agencies and will only apply ones they believe in!!

Seems to me school are affraid or apprehensive to apply the help that is needed for little legs and are scared of it all.  Be persistant in the meeting Thursday and let them know verbaly and in writing what works for little legs and what doesnt and how to get round it all, Bounce has CAT'S (communication Autism Team) twice a term and they come and assess bounce and advise school what to do to help him and advise in any situations that arise. (still not sure if she does any 1:1 with him has school hasnt mentioned exactly everythink that goes on!

If need more advice contact National Autistic Society for advice!

Tired eyes thank you kindly for the information what may I ask does senars stand for?

Sadly schools seem to be so helpful all the time they are looking for an answer themselves as to why a child acts/behaves in a certain way, then when they have their answer they don't help anymore its like they've done there job now its all over to you.

As a parent I now have to deal with what is best for my little legs,along with making sure I am her voice and I am heard, after all I may not be a qualified teacher however I am more qualified than any member of staff in the school to know how little legs works, what her limitations are and what her abilities are etc the list is endless.

I have a meeting in school this coming Thursday and I will be sure I get all my views and concerns discussed, as her anxieties need to be eased not encouraged by the teachers.

think I may have gone off on A bit of a tangent there sorry about that.

onwards and upwards :-) happy day to you all

I felt relieved that I was being heard finally, Bounce had been regressing for 2 1/2 years when we got the dx. He is the only one out of 5  with a dx. We all think about the what if's some time or other. But I know there is nothink I can do but just get on with life, find a way of managing by boys difficulties etc and get on with it. Times it can be very hard and challenging but nothink ever is handed on a plate, these days we have to fight for what our kids need to help them have a joyful life.

Don't wait for school to request a statement, contact your local parent partnership and they will help you request one yourself. I struggled for 3 years to get school on my side and to get the right contact details for SENARS to help Bumblebee now I have done it all myself and just waiting for final statement for him and draft for Bounce.

Hi Crystal, I hadn't even thought of a statement of education needs and the teacher made a very judgemental comment saying "you won't get a statement as there are children with more needs that are worse than your daughter", this was during a discussion regarding my daughters diagnosis and during this discussion I never once mentioned a statement the teacher seemed to make that judgement based on what I was saying.

I realise she was being defensive about her teaching and that's why she was saying such things to me, at the time I was very angry so opted to keet my mouth closed as the words I had wasn't appropriate to say the least.

Thank you for all the information I will bare all that in mind and will be making certain that my daughters needs are met to enable her to reach her full potential, sadly children seem to be smugly put in the failed box because they are not up to schools standards all schools seem to care about it are the children who get handed a print out with work on it and just get on with.

sorry for seeming like I'm ranting away.

have a nice day :-)

hi Calamity29.  Whilst it takes time to adjust to a diagnosis, which we understand here because we've been there ourselves, it's worth thinking about asking for a statement of educational needs so your daughter can hopefully get the support she needs at school.  If you're not getting it already, then you should apply for DLA also.  And yes, a sense of humour is invaluable, it's just that sometimes it temporarily escapes us!  bw

Crystal 12 very much appreciated I have been educating myself and family from reading up on things.

Hearing loss she has permanent loss in both ears one being worse than the other, had grommets twice and now found its permanent.

school sadly is not so supportive now she has a confirmed diagnosis when it was the school who suggested asd to the specialialists in the first place, all the time there wasn't a diagnosis we had so much support emails from the sen teacher all through it and now its nothing.

apple I am a very patient person and very happy go lucky which I am sure will return, and that is a great bit of advice from you :-).

.if you can keep a sense of humour and be patient and positvely encouraging your daughter autism there  will be good and the bad times  learn all you can about autism and join a support group if you can.

hi Calamity29.  There are lots of posts on this site from parents in a position like yourself.  The emotions you're experiencing are not unusual at all, so give yourself some time to adjust + use this site to gain knowledge + get support from other posters.  The diagnosis in detail will help you to understand how autism affects your child as an individual.  That's a good thing for her + you.  How affected is her hearing?  We understand + everyone will try + help.  bw

Sorry my daughter is nearly 6yrs old 7 next month, in some way I feel relieved to be able to understand her some more yet guess I'm still a little in shock as I never suspected asd as just always felt it was her hearing loss problems to be the cause of who she is.

thank you kindly for replying much appreciated, as a parent I feel truly blessed to have my daughter in my life :-).

sure I will get there once the shock goes.

You don't say how old your daughter is. My son was diagnosed at 12.

You are bound to feel lots of different emotions. Some people say they mourn for the child they will never have. I didn't feel like that. In a way it was a relief to have a reason for his behaviour.

It can take some time to get used to the idea, so let yourself adjust at your own rate.