new dx with lots of questions

iVillage Member
Registered: 08-09-2008
new dx with lots of questions
8
Thu, 07-08-2010 - 9:19am

Hi,

iVillage Member
Registered: 03-27-2003
Thu, 07-08-2010 - 10:26am

Welcome!

                                

iVillage Member
Registered: 07-24-2003
Thu, 07-08-2010 - 10:51am

I can't speak to a lot of what you ask, because we're still in the catalog-of-diagnosis stage, awaiting a re-eval. My daughter is nearly 8 and we've been dealing with diagnosis since she was 3. At various times she's had a diagnosis of pdd-nos, and ASD, but we didn't like that answer and kept asking different people. Now, we find ourselves just as confused as we were in the beginning.

What I can speak to are the issues you are having with friends and relatives. We've been there. H**l, I was there with my own husband in the beginning. I've made myself crazy (Literally. Medicated.) over these questions. 5 years later what I can say without equivocation is that you're right and they're wrong. Trust yourself, your intentions and what your perceive to be your child's needs. Choose care professionals carefully and trust them to help you and your son. Your son is the priority and you can't let anyone else enter into that decision space.

It helps to remember that your family loves your son and they don't want anything to be wrong with him. Denial, and even anger at you, is a natural response to something like this. My parents and IL's having been telling me for years that our daughter is nothing like the child with autism they know from where ever (church or work or the neighborhood, etc.,). They look for opportunities to bring it up. After years of stress I've decided the best course of action is to just say as little as possible and ignore the comments. Of course, they all live at least a thousand miles from here and it only comes up a few weeks a year.

Still, occasionally I have had to lay things out pretty clearly. I took the kids to my parents' house last year for most of a week, and it was a perfect environment for our daughter. There was a quiet room just for her, with a big desk stocked with art materials and books just for her. The yard was quiet and cool and fenced. My mother did whatever our daughter asked without challenge. It was all perfect, and I heard a lot about how wrong I was about her. Then, as there always is, there was an incident. It happened while I was busy with our younger son in the tub and my parents had to deal on their own for a little while. Once I had the children in bed I sat my parents down and re-explained neuro-biological differences, and how I needed them to suck it up and face the facts. I don't know if it helped, but I won't let that bother me.

What I'm trying to say, in my ridiculously verbose way, is that you can't stop what people say, only how you react. Don't let it hurt you, and ignore as much of it as you can. Be confident in your intentions, and actions. Refuse to talk about it with people who aren't supportive, and don't second guess yourself. This is a long, hard road that you don't take if you don't have to. You know that, they don't yet.




Edited 7/8/2010 3:40 pm ET by atomic_girl
iVillage Member
Registered: 02-28-2008
Thu, 07-08-2010 - 12:28pm

Welcome to the board.

I don't have any thing to add to what PP have said, as they said it so well. Just wanted to welcome you and let you know that you are not alone. It's hard, but together we can ease some of the burden.

Hope to get to know you as time goes on.

Andrea, mom to

Graham
Miles
Anson

Andrea, mom to

Graham
Miles
Anson
iVillage Member
Registered: 10-08-2009
Thu, 07-08-2010 - 2:37pm

iVillage Member
Registered: 05-11-2005
Thu, 07-08-2010 - 8:35pm

Your post brings back so many memories. My son is 15. I knew by age four we had some serious issues going on. We had a family friend with a child with AS and I recognized the symptoms. The behaviorial center tester declined to diagose Gregory with AS because he interacted with me too much. *Sigh* You really can't put a textbook label on a real life kid. The myriad of behaviors displayed with AS are as varied as the individual and their environment. The oldest


June08siggy

iVillage Member
Registered: 01-07-2008
Fri, 07-09-2010 - 12:00pm

Welcome to the board. The PP's have given you some wonderful insights and advice and I don't ahve much to add. For us, dealing family and friends was a mixed bag. Some very loving and clued-up friends were great - one said "oh I knew there had to be something because I just knew it wasn't down to your parenting, you are such a wonderful mum" that made me cry. Some family members are still of the "spank it out of them" mind set and we just ignore them. For everyone it has been a long, slow learning process. I keep on quietly and patiently educating our friends and families about Aspergers, and now that Euan is older he is a bit of an Aspie-ambassador about it - he is keen that people around him understand the condition and do not think he is being bad or rude when he kicks off or goes flappy. In fact, we have agreed that for when he starts high school I am going to get a t-shirt made for him to wear during Phys Ed (his least favourite subject) that reads "I have Asperger's Syndrome. What's your excuse?" He thinks that is the funniest thing ever....:-)


It does get easier in time, as you learn more about the syndrome and also more about your own child (each Aspie is different....) and you get better at translating the world for your Aspie, and translating your Aspie for the world.


Aspies are a real challenge, but they are also great. I wouldn't change mine for the world, he's taught me a hell of a lot.


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

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


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


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


 

iVillage Member
Registered: 10-03-2003
Fri, 07-09-2010 - 1:29pm
I can related to you and everything said, but to be honest with everyone it has been very difficult for me to accept it or communicate it to other people especially family.
iVillage Member
Registered: 08-09-2008
Sun, 07-11-2010 - 7:49pm

Thanks, everybody!