Every day is a struggle

Post Reply New Topic

Lmao thanks Oddfiction thats the first laugh i have had in days! what you are saying is so true! at the moment i have my Aunty telling me i need to do this and i need to do that, i have explained to her that what i have been doing in the past (and what most parents are doing with "normal" kids just does not work) oh i hate saying normal kids! because to me my kids are normal they just see/feel things differently ... i guess some people just find it hard to accept but i'm sure i will get there eventualy, especialy now i have found this place to come to

Oh the glory of the acronym "NT" !
Due to its invention we no longer have to spend time saying "dominant style of interacting, thinking, socializing, responding, functioning persons of the human race who dwell inseperably upon this great intricate globe of a world we live on..."

(sorry I forgot the rest of it while spellchecking)

Though it took me about 4 hours to figure out what it actually meant when I first found this board...


I'm here all week...

Lol your great! i like you already ... its good to know that you hang around here a fair bit is it ok if i PM you? would love to ask you some questions ... thanx

I fully understand. It is overwhelming and you do spend so much time getting through the day that actually dealing with it seems to be nearly impossible. Me? I am frozen right now. Frozen and can't move. I know I need to start making the therapist phone calls, reading more books, etc...but I feel frozen. I have started the IEP process w/ the school, so I at least started that. We are just finishing up the eye testing and I will get the eye therapy plan from the doctor this Friday (doc states eye therapy will reduce sensory issues). I really need to make the call for the OT to get these sensory issues under control. I've had the diagnosis (the 'direction to go in for help') for almost exactly one month now. All I did so far was continue the eye testing, psychiatrist, work w/ the school. I have so much more to do....but every day is overwhelming...I guess I am not really frozen since I did some things, but I am not moving at my usual pace when things need to get done. I am a 'git er done' type person - action helps me not be emotional. Right now for some reason I feel emotional and am not in action. This....is not what I expected...uggg...

Im glad im not alone, thats where this place has been so great even though ive only been a member for a few days, our neuropyhcologist asked me why none of this had been picked up at school since my daughter is 10, it made me a little angry because i had been trying to say to them for the last couple of years that something wasnt quite right, then she asked me why i hadnt picked up on anything with the boys, im like OMG im not the neuropyhcologist here (i did not say that though lol) how can someone know when i honestly believed that my kids just had a few funny ways about them, i mean everyone is different right? Its so hard because they are all totaly different, they all have different ways, i only realy started asking questions because my daughter was having so much trouble in school and also being able to understand simple requests, example she wants so badly to walk to school and i know that she is not capeable of doing this ... so one day i said to her ok ill drive you most of the way to school and ill drop you at the corner and you can walk down to school and ill meet you at the gate, she said what do you mean? so i explained it again, she still did not get it, i had to show her, i took her to the corner and said ok this is the corner now you get out and walk to school and ill meet you there! ahhhh we did it! now with the boys they got this right away, they are fairly good in school infact my 8 year old is loving maths. My boys have more problems with sensory things like clothing and smells and the list goes on, now if AS people were all the same then yeah sure i would have picked up on it right away, yes its frustrating and sometimes i could wack myself in the head but im sure thats not the answer lol ...

Hun.
Take a break.
Let all this new information sink in for now.
Learn more. Keep posting. Keep searching.
You've found the diagnosis, you've found a support system for yourself.
You've done a few first steps. Fit a few more in when you can.
But you're still adjusting to a new vision of the world.
You've just found out that not everyone thinks the same way you do.
Funny, that's EXACTLY what happens when an undiagnosed adult comes across AS....
The world opens up a new dimension! The universe expands! That's heady stuff!
WE should all get prizes at this point for staying sane after our new discovery.
And that isn't sarcasm.

Don't beat yourself up too hard about 'freezing up' - you aren't frozen, you're absorbing newness.
Let that happen. Give yourself a deadline - say two months - at which point (november 10th!) you promise yourself to take action. That gives you nearly two months to research, acccept and toss new or worthless theories and solutions, make and break to-so lists, and understand this new dimension a whole lot better. Your actions on November 10th will be a hell of a lot more organized, driven, and productive that way, instead of chicken-with-head-cut-off productive.

(Would snapping turtle with head cut off be a more appropriate image, since a chicken runs aimlessly, and the turtle just keeps powering on in the direction it was facing? ... )

you know, i think that first while its ok to just let everything sink in. the autism isnt going anywhere if you take your time to wade into it. it will still be there when you are ready to get to work =)

the diagnosis is like getting a manual. suddenly youve got the info you need. but you open the cover, and OMG. THERES NO TABLE OF CONTENTS! you know this book has the answers, but theres nothing to tell you where to find it. and its a BIG book. hellooooo, anyone, im missing some vital pages here!

i have found that after getting the diagnosis, its been even more frustrating. i thought the diagnosis would come with that table of contents, where to go, what number to call, who to talk to. its not what i expected either. everywhere i go, they just point me elsewhere or shrug their shoulders. instead its like someone threw the unbound book into the air and i am struggling to catch the pages as they float down, desperately digging through piles of papers trying to find the information i need. its been 4 months, and i am still digging.

i have already decided that at some point, i will create my own local support group, or at least website for my area. someone has to provide something for the parents who are hit with this. how can you help your child if you cant find help yourself to do so?

Jeez. That's how I feel too! Well put! VERY well put.
There is sooooo much confusion, and so many walls, and so many dead ends, and so many uneducated 'professionals' in the world who... well I could rant...

Imagine being an adult who just found out they were an Aspie and who is now trying to get through that realization... what it means for 34 years of the past... what it means for the future... the good and the bad of it... the self realizations...

On the plus side, it seems my journey is helping alot of you guys see inside of it all.
And.. alot of your comments, questions, and posts are helping me see alot of the things I'd miss all on my own... symbiotic the best kind of relationship.

It has been 2.5 yrs. since my son was diagnosed, and I still feel that I have tons of research to do! But you know what, our children are on their own time table. So, sometimes they just need times where we are not trying to work with them or trying new therapies, etc.... Sometimes, I see big spurts of development with my son when I am not really "doing" anything except loving him and accepting things as they are and trying to keep hope in my heart for his future. Granted my son is only 5, so I guess there is a lot of development that goes on in the younger years.

Try not to beat yourself up for missing the diagnosis. If my son would not have had so many physical delays in development, then I probably would not have picked up on it so early myself.

If there is one thing that autism has taught me, it is to take one day at a time. I always thought that sounded good to say to people when they were struggling with something, but now I truly understand what that means and am doing that in my life.

I don't know what your religious views are, but I have to continually surrender my son to God and trust that he has a plan and a purpose for my son's life, and that he loves my son even more than I do which is so hard to comprehend.

Just remember to take some time for yourself, no matter how small it is . You have to remain sane in order to help your child. If you go off the deep end, then how will you help your child? Remember, you will probably help your child just as much or more as any therapist or psychologist will just by giving him the love and support that they need.

Hang in there!! !

BTW, AzureCrayon, I love your description of how it feels after getting the diagnosis!! !

I totally agree with this! well done!

I myself are going through some highs and lows at the moment, at first it was devistation to get the diagnosis but then came the relief, now i am dealing with family members who are finding it hard to believe, I am getting storys about ohh i have heard of someone who has got that but they wont eat in front of anyone! Argh! how can you explain to someone that everyone with As is different? wouldnt it be great if there was like a little hand book, something not to big that you could get and just pass on to ppl that dont understand,

I am thinking of making one up myself, i have done quite a bit of research but my god its never ending!

why thank you. i DO have a bit of the drama queen in me, it lends itself well to analogy



i dont have to stretch my imagination too far as i am watching the exact scenario play out for my SO, the only difference being its been 38 years for him =) but i am getting lots of personal experience in being a woman who just found out her partner is autistic, trying to get through that realization, what it means for the past and the future, the good and the bad.....

mahini, i like the idea of the booklet! i will need to do that too i think. there are cards you can get like that and i was going to do some on business card stock for when we have what we call "autistic moments" out in public, but i think a more expansive booklet would be great for family, friends, teachers, etc, and i can tailor it to my sons specific issues. i hope you dont mind me stealing your idea!

[/quote]mahini, i like the idea of the booklet! i will need to do that too i think. there are cards you can get like that and i was going to do some on business card stock for when we have what we call "autistic moments" out in public, but i think a more expansive booklet would be great for family, friends, teachers, etc, and i can tailor it to my sons specific issues. i hope you dont mind me stealing your idea![/quote]

Above is quote from azurecrayon
have no idea what i have done wrong here lol

Oh i dont mind at all i think that everyone in the same situation should do the same, especialy for family members that are finding it hard to comprehend. It would be so easy to just do a search and find a list of symptoms and print it out, but that in no way is going to help! I'm going to put alot of effort into this and try and explain things as simply as i can and at the same time will also let the people know that they need not go looking for answers themselves, because what they come up with will not relate to my kids anyways. Good luck to you, i hope your booklet makes it easier for you as i am hoping that mine does for me

Last edited by Mahini on 10 Sep 2010, 9:30 am, edited 1 time in total.

Watch the movie "Adam" with friends and family. It's a start, at least, to open communication.
If I had seen the movie sooner (rather than 5 times friday and two times yesterday... Today hasn't started yet ) I would have used it as an introduction before bringing the topic up with my mother.

What a horrifying experience that was. Complete failure. I was about as toungue tied and unclear as the guy in the movie was when he tried to explain it. I do however worry that some of the movie will be lost on non-Aspies and alot of it misinterpreted... maybe a running commentary!

"See... when she misses the 8 o'clock marker, despite the fact that in review it wasn't a hard and fast promise, the mental preparation of the (unwitnessed) last 5 hours or so comes to a breaking point, and whereas at the specific moment of 8 o'clock he would have achieved his goal and gone 'social', the added pressure of 11 minutes BROKE all that carefully repressed anxiety and...."

But that would screw with the movie and probably piss off anyone trying to watch it. Oh well. Either way, the actor did a darn good job "playing Aspie".

oh, by the way the format for quoting a specific person is:

[quote = OddFiction] Dang I talk too much [/quote]

but without the spaces around the equals sign.