Quick Poll: FIRST STEPS?

iVillage Member
Registered: 01-02-2010
Quick Poll: FIRST STEPS?
5
Mon, 03-01-2010 - 10:17am

Happy Monday everyone!


I'm working on a project -- and I need some feedback.

~Danielle
Poynette, Wisconsin

Mom to:
Amanda, 21 years (Neutotypical)
Robin Ann, 16 years (ADD - Inattentive subtype)
Chazz, 8 years (Asperger's, Seizure Disorder)

Avatar for littleroses
iVillage Member
Registered: 03-28-2003
Mon, 03-01-2010 - 12:34pm

iVillage Member
Registered: 02-28-2008
Mon, 03-01-2010 - 1:03pm

Medical testing as pp noted.

Contact EI or the school department depending on age of child. Get that started ASAP.

Get referrals for therapies and therapists from provider who did the dx'ing.

Get educated using on-line resources, library, and books. Knowledge is power. Research not just the dx but also the IDEA.

Find support IRL and on-line. Sharing can make it bearable, and other people are great resources for ideas, therapists, etc.

I'm probably missing something here, but that's what I would do to start.

Andrea, mom to

Graham
Miles
Anson

Andrea, mom to

Graham
Miles
Anson
iVillage Member
Registered: 03-27-2003
Mon, 03-01-2010 - 8:22pm

Well, since I was in total denial of the dx for quite a while (at least a year?) my first steps might be different than others.


I would say 1.

                                

iVillage Member
Registered: 01-07-2008
Tue, 03-02-2010 - 8:13am

Bear in mind that I am in Scotland, so have different systems/services/legislation etc to you guys...


1. Process the information. Seriously. It can come as a shock, or as a relief, at the end of a hard journey and/or at the beginning of another long journey. But the first step is to actually come to terms with the diagnosis itself: deal with any emotional or pragmatic/understanding issues you have with it, and make sure that your DH is dealing with this too. Explain the diagnosis to your child, if you can, too. But steps 2, 3 and the next 100 will be harder if you don't do this first. It's ok to grieve, be cross, be jubililant, to not understand it, to understand it only too well....but you need to acknowledge all that and work it through.


2. Find out more information. Read, read, read as much as you can about the diagnosis, and apply that to *your* child as much as you can. The more you know and understand about your child, the better placed you are to help and support them. Then start finding out about the rules, services, support etc that you can get access to. Do not be afraid to push for further evaluations, tests, interventions, services etc.


3. Get support. Find online and IRL support - fellow parents, ASD groups, etc. They will be a lifeline to you in good times and bad.


If you want to translate this into *practice* - what you need in Wisconsin is a leaflet in three parts. A) What the diagnosis means B) Sources of more information c) Sources of networks/self-helf groups. And an awareness that you probably won't use the info in B) and C) til you have processed A).


hth


Kirsty, mum to Euan (11, Aspergers) Rohan (7, NT) and Maeve (4, NT)

"My definition of housework is to sweep the room with a glance"


Follow my blog on http://mumsnet.com/blogs/kirsteinr/


 

iVillage Member
Registered: 02-27-2010
Tue, 03-02-2010 - 12:14pm

Hi everyone. For me, ending up with this dx was different.

Mary E. Barabos