Obsession for info and help

[spacegirl]

My DS2 (3.5) is in the process of being DX, prob ASD. I am so obsessed with getting my son the best possible help and finding out info it seems to occupy my thoughts all the time. New world of lots of random health people to see etc. My DH is fed up with me spending time on the computer. He would rather do the whole ostrich thing if you know what I mean so feel like I have to compensate and take responsibility. It is all new and I am feeling clueless.

Just interested to know what other peoples experiences have been like or are like. Does life go back to being normal if you know what I mean, or is it a new kind of normal?

DS is a similar age, and will start the DX process in Jan/Feb hopefully (he has very delayed speech and understanding). I am very pre-occupied too, a combination of finding out info and plain depressing myself worrying/feeling guilty. I think that this sort of experience is normal to a degree, but equally not having outside distractions is probably unhealthy, and is more likely to exhaust you and tip you into depression.

Hello, my situation is a bit different as DD was diagnosed with her condition at 10 days old but I did exactly the same, was on the computer researching it forhours, could only think and talk about it sometimes and had a real need to be around and talk to people who had similar experiences. Then I wouldgo through weekswhen i couldnt bear to look at anything relating to it so i think its all part of the process of adjusting to it all. I also went through a phase of just keeping REALLY busy just to warn you, i later read its one of the "stages" parents go through too. Now (11months on) things are easier, I've met others living with the condition, i've scared myself stupid reading all the worst case scenarios i can find, and i suppose it does come and go because i still have times when i get down and worry over it but its nowhere near as all consuming so in answer to your OP yes i think it does all calm down. Oh also, my XP is the head burying kind too, it can be really frustrating, especially as he thinks my interest is dwelling on the condition not her etc etc. Sometimes you just need to do something though!

I remember when ds1 was first dx'd. He has cp. I was the one who let it consume my life in every way possible. I had to know everything there was about it. I think it might be a bit of a woman thing actually. For me it was about educating myself and being prepared for what was to come. It was something I just had to do. I say 'had' because you do get back to 'normal' slowly and then one day you realise that you don't let it take over your life so much. My Dh didn't feel (and never really has) the same desperate need to disect it like I did. At first I just thought it was lazy on his part because if I was educating myself, then he didn't have to. But in truth, I just don't think men have that same need to annalize things to death like us women.

I so know where you are coming from my son 2.3 recently diagnosed with ASD. I have spent hours and hours researching the most effective treatment what help and support is available. I just feel that if I dont who will? Im still researching regularly just to make sure I dont miss anything. I find it hard to know how to split my time between doing practical stuff and researching and end up feeling exhausted all the time. Im glad there is mmsnet to ask questions and share info or I might go mad!!

Thanks for reassuring me that I am going throgh a normal process. I have to say it is overwhelming but know that I have 3 lovely kids and nothing has changed on one level (I have a DS(5) and DD (16mo).)

I just feel that my headspace is all taken up. There is loads to get your head around isn't there? Just need to get a bit more informed and confident bit like a new kid in school. Feel like I need lots of hugs and reassurance that I am doing things right rather than feeling like I am getting it wrong.

It sort of helps and scares at the same time. Thankful for stumbling upon MN definitely!

It must be really hard having to wait TC. Is your DS just about to start state nursery?

In work at the moment so having to do a bit of work too!

I was exactly the same and still am, from time to time. A piece of advice with hindsight - try to have an hour at least before you go to bed without going on the computer and researching. I found it was making me very anxious and preventing me from going off to sleep - with knock-on effects the next day. I don't count MN in this - it's more the reading up on different treatments, case studies, research etc. I think you have to force yourself to read a book or a magazine or watch TV - something completely unrelated to ASD - if only for a little while. I'm great at dishing out the advice but don't always take it...

At the beginning I remember feeling absolutely overwhelmed by it all - like 'how will I ever get to grips with all this stuff?' - but it's amazing how quickly you learn!

spacegirl - DS is at private nursery. I put him in at 2.5 to see if that would help his speech (it hasn't), and had so much trouble settling him in, that I'm scared to move him now. Also the staff are very caring (in a slightly lazy way), so I'm worried to move him in case he ends up with people that aren't as understanding about his problems. Nursery had the council early years advisor in, but all she did was say follow the advice from Private SALT (DS has had one private SALT appointment), and haven't heard anything further from early years since.

TC DS2 is in private nursery for a couple of afternoons it took him a long time to settle in but now he is happy pootling around on his own. unless things don't go his way. I was angry at them for not really notifying me of all his problems but they did provide me with a really useful contact. A school transition worker. She works with children with SN to ensure that their transition from place to the other is as smooth as possible. She is really nice and has even said she will be DS 1 - 1 when he first starts nursery as he is doesn't like change and build up time with him each day. She also referred me to Early years before the paed got his letter to them makeing process faster. DS going before panel in Oct and everyone asked to do assessments b4 then. She also liases with school and health professionals to put a program in place for him. Don't know if you have one of those in your area? Also I am seeing the SN health visitor at the end of the month and heard she is helpful as she works in the child development centre and has good links to everyone. It all seems to have kicked of because he is going to State nursery now and in school system. Also his problems are becoming more apparent as he gets older.

I am really worried about the move as I know DS will find a large nursery environment very hard but I feel it would help him in a years time 4 school. I feel a bit sick about it and also that he can't tell me what it is like as he does not have the verbal skill. Or maybe he won't understand etc... Also the whole process is really complicated and I don't know what I am doing. Just went along State Nursery route as DS1 has already done it and I didn't really appreciate the extent of DS2 problems until recently.

As you can see I am still obsessing!

PS SPHILL after reading your message lateish at night I did switch the computer off!

thanks very much for the detailed post, spacegirl. unfortunately early years have proved to be worse than useless; nobody has any sense of urgency about DS SALT/paed referrals. I will try and find out if I can access a SN HV.

Spacegirl - I did endless amounts of research using books and the internet back when I suspected ds1 had ASD. It was how I first found MN. Then when I started receiving the first reports from people observing and assessing ds1 I again turned to research to find out what it all meant. Then a few months after ds1 was dx'ed I had my suspicions about ds2. In many ways he's the opposite of ds1 so again there was a lot more to look into.

Things have settled down a lot more now though in that respect. I sometimes re-read stuff that I haven't looked at for a long time to see if any of it is useful to me now. I also still do bits of research when new situations crop up, eg transition to school, toilet-training, and the dreaded DLA renewal forms.

Coppertop that was how I stumbled on MN too and it has been such a good outlet. Also all the past threads have been really helpful.

I just feel like it helps me to know all info I can at the moment but I am trying to ration it as it can be a bit overwhelming. It is good to know that it peaks and then just needs maintenance. My DH will be relieved.