DS has his ADOS test tomorrow & I am dreading it

[pinkchampagne]

Have been trying not to think about it too much over the last few days as I got very upset a few weeks back when I received the appointment, but now it is tomorrow & I am dreading it. I have been told I will get a definite answer & I don't feel I am mentally ready for it - not sure I will ever be though. I know it is for the best, I know it may help him & these are positive things, but I am scared of the dx.

I am on my own with the boys & my parents are away on holiday. I am scared of how I will react if they tell me he has some kind of autism, which I suspect they will. Don't know how to prepare myself.

(hugs) Its the confirmation of a life long difference that our dcs have to cope with that is so hard. There is no 'maybe he will grow out of it' left. I 'knew' my son had autism but still confirmation hit me hard. However I have found the Dx has helped in subtle ways. I understand my son better and so do the professionals around him. Take some time to adapt to the dx and be kind to yourself.
Lastly your son is the same lovely little boy now as he was before the Dx.

DLA is disabled living allowance. It is a non means tested allowance to help pay for the extra care required over and above an average child. There are different rates depending on the time/ amount of care. For instance if you have to help the child dress/ organise their things, remind them to wash then brush their teeth at an age when most children can do these things without support then the child may be entitled. If a child gets DLA at one of the higher rates the carer may also get carers allowance ( this is means tested on the carers income).

Thank you, magso, I know he is & he has been especially lovely since I heard the news.
It is the whole lifelong thing & the not knowing what the future holds.
My DS has always been gorgeous to look at & when he was a baby & toddler I would hear the phrase "he is going to break some hearts one day" so often, but now I wonder if he will even ever have a relationship. Will he be able to find work? will he ever be independent etc etc. All kinds goes through your head.

Just had a message from his father to say "bet you didn't sleep last night" Hmm. Wonder if he is now feeling guilty.

Thanks for the info, magso. DS has to be reminded to brush his teeth & wash every day & I still have to lay out all his clothes each morning in a pile. Even when I do this, he can still forget his pants etc!
Couldn't imagine I would ever be applying for a disbled allowance. It is still all too much to take in atm.

PC it really does get better give yourself few days to get your head round it i think it was easier for me as i knew iyswim but it is the confirmation thats like a slap in the face but to be honest after few days i sat down and thought right we know now and lets get things started

it bought me and ds closer which i didnt think was possible but i understood him so much better and didnt get frustrated because he wasn't conforming as other children his age was i was seeing all the small changes instead of only looking for the big and couldnt have been more proud of him

it does get better but allow yourself time

DLA is disability living allowance if your ds needs are higher of another child his age you could qualify for some extra money for him which could be used for therapies or educational toys etc just look up on google and you can apply for pack to fill in even if you only got low rate its still extra money a month u=it is heartbreaking to fill out as has to sound so negative but its great as we can now afford to do so much more with ds and his still your ds still the fab boy you always had

just think of it as his got a lable of love as now he can get all the extra help you both need to help him progress and without it you wouldnt get that extra help so its not such a bad thing

we dont tell everyone about ds we let him be known first as when people know nothing about ASD there quick to form there own ideas so once they see ds for the wonderful boy we do we then tell them as they cant judge then they know who he is and what he is about

my ds since dx he was dx at 3 has come on leaps as we have had all the right help alot needed chasing but we have it and he is a different boy

so i wish you and your ds the best with getting great help too

your a fab mum with a fab child and that wont change but now you get to see the world 2 ways and really get to know your ds and how he works its the greatest feeling to see them come along and understand why they do some things before you get it but dont understand why, its a good feeling

sorry waffling but my ds is my best buddy and i really only got him after he was dx as i always wished he was like others but now i wouldn't change him for the world

hope i dont sound patronising at all im not so good at giving advise sometimes {{{{big hugs}}}}

do you use now and next at all? pic cards to show whats happening now and next you could have some of these up as ds is visual learner so rota whats happening brush teeth get dressed you could put what clothes come on next

even games can be played of dressing something and what order clothes go on etc ds has learnt a lot through play we do social games together and this is the only way he seems to really learn but has come on leaps and bounds for it

he is more social will say hello now and respond to people talking to him where he wouldn't before but his more confident on what he has to say from our games

just few ideas that may help your ds also as my ds learns more when relaxed rather than strict formal setting

Thank you, bubbla. Your DS sounds lovely & you clearly have a great relationship.
I can see what you are saying when you say the dx helped you understand your DS more. I can at times get so frustrated with DS but I really didn't know what I was dealing with. I also have a friend with a child 2 weeks older who constantly says "you wouldn't believe there was only 2 weeks between them would you?" She knew I was getting DS assessed too so how I have bit my tongue at times I don't know!

Haven't heard of now & next. Guess I have been in the dark about a lot of the resources available. They sound a good idea!

now and next or visual rota so you can put up whatever you want him to do and how as sometimes its easier to see than have lots of words

ds has one we got ours off ebay they have quite a few things that are helpful in that way

you are doing great i still do have days of being frustrated but i can snap myself out of it quicker the hardest thing was learning the triggers and learning how to deal with them

i also dont feel so guilty if ds wants to sit in his room alone as i understand he needs this time to relax

also i found my ds sensitivities were down to lack of sleep and behaviour so we asked paed for melatonin which induces sleep so you can regulate a sleep pattern and since we done this ds is like a different boy again we have linked alot is tiredness or illness rest of time he can come across like his just a shy child

if you have anything you need extra advise on then just write up what issues you have with your ds one of us will have some advise to offer thats available or has been offered

i did this when ds was first dx and had lots of helpful advise regarding behaviour sensitivities etc really helped as no one gets told all that can be a help to you sadly we have to chase alot of advise up on our own xx

Thank you so much, Bubblagirl. I am still feeling a bit overwhelmed with it all. Just watched "the autistic me" program which didn't make me feel better.

His dad has gone into "they are talking rubbish, don't know what they are doing & I will give them all a piece of my mind" mode, which doesn't surprise me. Kind of glad he wasn't there yesterday!

PC the other way the dx helped was to let me relax into parenting rather than constantly worry I was doing it wrong IYSWIM. Understanding and accepting that my child has a different way of sensing the world allowed me to be free to parent as ds needed rather than as per conventional wisdom.

I'm sorry it's not the news you were hoping for PC, but as you say, even if they had given you different news you would still be wondering if they had missed something - your boy hasn't changed, all that has changed is that he will now have access to services which will help make his life (and yours) better.

It will take you time to adjust to the news, even if you were half expecting it. I couldn't speak to family or friends for weeks, still can't really but I'm overseas too so isolated geographically which I think makes things different.

Hearing this kind of news is extremely painful for you I know, but I think that the pain will be worth it to help your son continue developing. Am thinking of you and wishing you and your son all the best with his progress.

I felt like I didn't want to talk to anyone after hearing the news too, catski. I was even silent with DP for a while & when I did say something, I couldn't say the word "autism", just "on the spectrum."
The reason I wanted ex h to pick up DS2 was because I didn't want to face anyone - I just wanted to curl up & cry.

I can see that it will be a positive thing though & there have been so many times where I have felt out of my depth with DS1 & said I needed help to handle him but I didn't know where I could get this help. Everyone around me seems to have NT children. I feel very alone.

You're not alone pinkchampagne. A lot of people here have been through (or are going through) the same process as you. It's a form of grieving really - you are mourning the child you thought you had/were going to have, even though you know rationally that your child hasn't changed.

You know, we all have our strengths and weaknesses, whether we're on the spectrum, or NT. I'm paraphrasing from some schmucky film or other now, but there's no life without sorrow, and none without it's consolations. I find the highs and lows are more so now - ecstasy when my son accomplishes something new and plummeted into the depths when we have a bad episode.

Keep your chin up - it's a process you're going through and you will come through it.

you can see from all the support on here your not alone but ikwym in real life its nice to have someone familiar understand what your going through i realised very quick i couldnt talk to anyone with nt child as every time i tried to explain something there child was this and that doing this and that no one would actually listen so being able to talk on here was great until my painful period ended and to be honest was quite quick for me as i already knew just needed to accept

now i still have days where its sad my ds has to be different but to be honest his the nicest politest little boy and i wouldnt want him to change i know some terribly behaved nt children

ds has his moment but i spent months watching his triggers and learning how to defuse them quick understanding what sets them off and makes them work so now i can spot them and defuse it before it starts

but first give yourself time when you feel strong enough you too will do what you have to do we have no choice but just remember your always doing a great job you have a wonderful child and your not alone

maybe seek out other mums of sn children in your area look up sn group they hold holiday play schemes for outside school time holidays etc for all children of all ages

my sn group is called SNAP not sure if yours would be same but i guess just google for your area

I used to find it very difficult to talk about Dt2? problems in rl ( ADD, associated LD and DCD) to anyone . However now I am a bit more open as time has gone by. I think we need the different types of responses that people provide. Its nice to talk to people who have been through something similiar and share experiences and feelings. When I come back from meeting those sorts of friends I usually have a sore throat as I talk so much more than usual when I am with them. It can be annoying to hear people who are not going through it say ?He will be fine. He is such a sociable/bright/well mannered/observant boy? but sometimes I need reminded that yes he is those things too as well as having his problems. I think we also need people who are not going through something similar but who are not going to respond to concerns by trying to say nothing is wrong and who offer practical and supportive advice. Difficult to get the balance right but over time you will get there. I hope you are not feeling too bad atm

I think you are right there Paranoid, it is awful going through the process, and the lonliness and heartache, I have had two hard emotional years, but I am amazed as I slowly begin to be slightly more open with people. They might not have the same experiences, but people are interested, understanding and sometimes you speak to someone and they say yeah, my dd has ds, or my sister/cousin, neighbour's child has autism - people can be ignorant but they can also be so lovely too.

I know when the hv/speach therapist/paed started talking to me about asd, I found it hard to talk to anyone about it, just so emotional.

Be kind to yourself PC, you are not alone, it is just a hard process to go through.

I really appreciate, so much coming on the sn board here, I feel really lucky I found it, it has helped give me a lot of perspective and is full of really useful advice.

Thank you all. Talking on here has helped so much as I can't talk to anyone much in rl yet.

i hope you are feeling better PC im off on holiday tomorrow and wont have internet access but i do hope you feel better and i'll check in when i get back xx

Thank you, bubbla. Hope you have a nice time. x