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Thames

Feeling a bit ???? after formal diagnosis

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Hello, joined a while ago after my son [8 yrs] had an appointment with the SALT and the stat ass process was started.

 

He was diagnosed as being on the spectrum a few weeks ago.

 

I have suspected ASD for a few yrs and had it preliminarily confirmed by the SALT a year ago so its not a shock or anything i wasnt expecting-so why do i feel how i feel? i cant describe it really just feel a bit low.

 

Tell me this is normal please :blink:

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Hi Thames.

 

the Answer to is this normal to feel a bit low is YES, even though youve expected it, it now been finalised and properly diagnosed and so now what your possibly going throw is a grieving process it is defo normal and all part of the roller coaster effect when a child/adult has been dx so you are just naturally going throw the process, you will feel many feelings, next will be anger and then frustration and then exceptance and youll feel fine for a while and then bang it hits you again.

 

Take time out for the next few months, look after yourself too, going throw diagnosis process, then statementing is mentall, physically and pscyhologically draining.

 

So try ang catch up on sleep, food, friends ect.... all the things you possibly neglected when you spent time sorting out your son and still continuing to do as it never really ends the things we need to sort out.

 

Are you a member of a ASD Parent group, NAS have support via a helpline and there is loads on here too on the board about the feelings and emotions of been told your child/adult has ASD.

 

It is a very emtoional time, take it easy and let go and feel it, you will feel better soon, but dont resist or you will just supress it and it wont be dealt with properly, so just go with it and soon it will lift gradually.

 

JsMumx

Edited by JsMum

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I would highly recommend the parents groups. Feeling low because you find out a relative has something lifelong is natural.

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Hi Thames.

 

the Answer to is this normal to feel a bit low is YES, even though youve expected it, it now been finalised and properly diagnosed and so now what your possibly going throw is a grieving process it is defo normal and all part of the roller coaster effect when a child/adult has been dx so you are just naturally going throw the process, you will feel many feelings, next will be anger and then frustration and then exceptance and youll feel fine for a while and then bang it hits you again.

 

Take time out for the next few months, look after yourself too, going throw diagnosis process, then statementing is mentall, physically and pscyhologically draining.

 

So try ang catch up on sleep, food, friends ect.... all the things you possibly neglected when you spent time sorting out your son and still continuing to do as it never really ends the things we need to sort out.

 

Are you a member of a ASD Parent group, NAS have support via a helpline and there is loads on here too on the board about the feelings and emotions of been told your child/adult has ASD.

 

It is a very emtoional time, take it easy and let go and feel it, you will feel better soon, but dont resist or you will just supress it and it wont be dealt with properly, so just go with it and soon it will lift gradually.

 

JsMumx

 

Thanks for your reply Jsmum

 

I actually felt relieved when the paediatrician gave the diagnosis, she asked how i felt and i said relieved she said thats common too.

 

This forum is helpful, ive been reading quite a lot on here for some time its good to get an insight from other parents.

 

Thanks again :)

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I would highly recommend the parents groups. Feeling low because you find out a relative has something lifelong is natural.

 

Thanks for your reply Trekster

 

Ive got a bit of info about some groups in my area from the paediatrician so im deffo gonna follow that up.

 

Im feeling better today [prob cos the sun is shining!]

 

My son is fabulous but i do worry about what the future holds for him, i just want to be the best parent i can be for him but also to help him be as independant as possible.

 

Thanks Trekster :)

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We are waiting for our son to be diagnosed with Asperger's, we thought he had behaviour difficulties caused by glue ear and was a bit sensitive to noise and got into fights a lot, we thought the tantrums were as he was like his Dad as a child, only worse, we thought he would grow out of it, lately we saw him worsen and cease to progress at school, and fight nearly every day. Now we see it in him every day, I think we were in denial schools and people suspected it for years but he passed the facial expression pictures test at an appointment with a speech and language person a few years ago so we thought he must not have it, thats is that. We were wrong. He also did everything early as a baby, so were no clear signs then. Anyway we feel awful and it keeps hitting us in waves and guilt that we did nt see what was right in front of our eyes, the more we read the worse it seems to be and so obvious. Instread of reading abotu glue ear i shoudl ahve got a stack of books on autism and Asperger's adn I would have seen it. I joined this forum today I am on a steep learning curve as he turns 12 today.

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J Gardener

 

Sorry its taken me so long to reply to your message, i couldnt remember my log in details so not been on here for a few months.

 

Thanks for your post, my son also seems to have a hearing issue but in our case it was that that we didnt really notice! ive felt for a long time that he was on the autistic spectrum though, it was only when i spotted my son well his brother when standing on one side of him speaking saying something like 'sorry i forgot thats the ear you cant hear out of'!!! he then went the other side and spoke to him! i then spoke to them and it seems that he cant really hear very well on one side they were just dealing with it and no one saw fit to mention it to me! I did feel bad that i hadnt even noticed :unsure:

 

At his paed appt i mentioned it and we are awaiting an audiology referal so hopefully if it really i an issue they will find it and hopefully give him any help he needs, if its glue ear rather than actual lack of hearing i presume there are procedures they can do? i dont know much about glue ear [something else for me to google!]

 

How are things progressing with your sons diagnosis?

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He got his formal diagnosis now it seems mainstream high school is nto suitable so will be placing requests and tribunals to get him specialist provision, talk abotu a leanring curve :) With glue ear they get grommets which last 6 months to over a year and that returns the hearing, but you must keep them dry, no swimming an dto wash their hair you have to block thier ears with cotton then seal with vaseline, if they swim they need ear plugs a swim cap and then don't dunk so we jsut don't bother with swimming. he has grommets at the moment, so his hearing si the best its ever been so ggo in fact that he is suffering with the autistic super sensitive hearing problems, damned either way, but we are used to the grommets now its been on and off since he was 5. its amazing the stuff kids won't tell you :)

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Hi

 

Glad to hear your son is getting help with his ears.

 

Grommets sound like a pain but if they help a necessary one i suppose. if thats what my son ends up having it will be a shame as swimming is something he enjoys despite the issues of getting undressed/dressed at the pool!

 

I know what you mean re the noise sensitivity though, i sometimes think my son is better off not hearing as well. but its just not something you can just ignore either.

 

Good luck with finding a suitable secondary school place, whereabouts in the country are you?

 

how does your son feel about his diagnosis? is he getting much [any?] support at school?

 

I feel very lucky as my sons school are excellent with children with ASDs and he has a fab teacher who is also the parent of an autistic child, im worrying slightly about changing teacher when he goes into the next school yr in september as change is never good with him and because hes been so lucky with lovely teachers who hes got on well with, i dont want that luck to run out!

 

Do you have any other children?

 

Sorry for all the questions! but its good to be able to 'talk' to people who understand :)

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Hi :) I have a 2 and a 1 year old as well the school he is at are great and take care of him the head and deputy spend a lot fo time looking after him and an assistant, but that runs out in about a month. we are trying to get him in an A.S.D> unit which we already knwo will be refused for lack of a place and will ahve to go to tribunal, will know wednesday . He si fine aobut it he always knew he was different.the babies won't settle tonight so are still up running around after a not so good attempted bedtime :) it si good to talk to people who understnad. I'm glad you sons school is good also. do u have other children? Do u still feel down about it I am worrying that feeling won't go away its changed everything to me, but I feel closer to my son now as I understand more.

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Feeling low about a diagnosis is normal.

It is the finality of it.

Most parents have spent a long time being sent from one person to another. Someone says everything is fine, another says not. They start school, it falls apart etc.

Then you get the diagnosis and wonder why it took them so long to see what is now obvious.

But when they are younger it is often not quite so obvious, and when a professional tells us not to worry, and that everything is fine, that is exactly what you want to hear.

 

Regarding hearing problems. As well as real hearing loss or difficulties - those on the spectrum commonly have auditory processing problems (see the APD(UK) website). They also tend to have sensory integration and modulation problems, which can include auditory processing. My son tends to mono-process through one sensory modality at a time. This means that when he is focused through a certain sense he will effectively be deaf. So if he is looking at something, model building, talking, or even walking he usually does not hear what you say.

 

So a child with a 'hearing' difficulty could have one of, or any combination of the above problems.

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