Kristine - posted on 01/23/2010 ( 4 moms have responded )
I'm the mom of three kids. Two are 'neurotypical', whatever that means! my oldest has Aspergers. We never heard of that term until he was 17, he is now 24. I began working in the field of autism as well as completing a BA in Psychology, to learn more about it. After 4 years of working in ABA, I'm hoping to change tack a little. I see a need in my area for parents who have just received a diagnosis, or those who are waiting, or those who are on a waiting list to see the specialist, or those who suspect something because of behavioural problems, etc, etc... I see a need for some basic information to be made available....right NOW.
We all know, early intervention is key . And some parents are Great at getting in there and being proactive immediately, finding out about therapies, alternative treatments, specialists, support groups, funding opportunities, integrative schooling programs, doctors, speechies, OT's, PT's, companion pets, etc, etc, etc. And there are those of us who are overwhelmed, or scared, slightly in denial, or we want to know... we just don't know what questions to ask, or who to ask .
I would like to develop a workshop for those parents. And I'm hoping some of the mums from here might be willing to help me out with just a little information that might make this journey a little easier for the next family to go through this. These are the main areas I hope to develop, and if there are any suggestions for other areas, I'd be greatful to hear them. In the meantime, would you be willing to share:
1) What are some of the questions you wish you had known to ask a) your doctor b)neurologist c)school, d) other.
2) Can you describe a typical challenging behaviour and a) a less than successfull response and/or b) a successful response to that behaviour.
3) Therapies you have tried that have been a) successful or b) a waste of time and money
4)Any recommended resources
5) If you had to pick 3 basic issues that you needed help with while waiting for diagnosis and/or to get in to the specialists, what are they? eg. 'Dealing with meltdowns' or 'improving eye contact', or 'establishing some form of communication' , ..
I do not want to set myself up as an expert, or as competition to anyone. What I hope to be is one of the first steps in helping children to receive the best help they can, as early as they can. With approximately 1 in every 160 children being diagnosed, the waiting lists are getting longer. So parents should be given affordable access to some kind of information, so they can decide what to do for their child in the meantime.
Any information will be treated with the utmost respect in maintaining privacy and no personal information will be disclosed. If you are willing to share any information but not in an open forum such as this, you can reply directly to my peronal email at firstname.lastname@example.org .
My thanks to any who are willing to be a part of this discussion.