We are officially....

iVillage Member
Registered: 08-10-2006
We are officially....
5
Tue, 06-12-2007 - 11:40am
...diagnosed with Asperger's as of this morning. Funny how much you prepare yourself for it, but when the doc actually says it, you feel like you are kicked in the stomach. I felt like I was very small and he was about 8 feet tall for just a minute. I thought about that commercial where the dad is playing with his boy and they say your child has a 1 in so many chance of becoming a pro ball player, and a 1 in so many chance of having autism. And then poof, it was all gone and I was like OK, back to business. At work, I felt a little bit sick not too long ago, just a little bit overwhelmed, like I wanted to cry, but I guess it is normal. I think it is just hearing it and seeing it written on paper. He said based on the evals we and his pre-k teacher filled out, he is a moderate to severe case. The positive thing is he is very bright, very intelligent. He said Children's hospital has a social skills group in their speech dept that we can get him into and they also have 2 autism support groups that meet monthly. He filled out the paperwork for the equitherapy program, thought it is an excellent idea for Nick. We are going to see how school goes to see whether we need to add the Metadate back for his ADHD and keep him on the clonidine since it is helping the attitude :). We go back in early October. Well, thats my story and I'm sticking to it...thanks girls for listening...
Christine

< < Photobucket

Christine

iVillage Member
Registered: 06-02-2004
Tue, 06-12-2007 - 1:53pm

(((Christine))) I remember feeling like that too when my youngest dd was dx'd with PDD-NOS. On the one hand I was relieved to finally have someone else validate my concerns about Lily. On the other hand, seeing it on paper made it so much more official. I know that Lily is still Lily no matter what "label" she is given, but it's still hard not to obsess over the dx sometimes. I would highly recommend joining one of the support groups. Before we moved in Jan. we belonged to one and it helped me to not feel so alone. The social skills group sounds like a great idea too! Just remember that we're all here for you.

Amy~Natalie & Lily's mom

iVillage Member
Registered: 06-25-2003
Tue, 06-12-2007 - 5:55pm

Christine,


I know exactly how you feel. It was exatly the same for me when Peter was DXed. I totally expected it. I knew it ade sense, and to me the actual DX was supposed to be a formality.

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 05-16-2006
Tue, 06-12-2007 - 7:35pm

(((Christine)))

I remember April 19th 2006 like it was yesterday. That is my son's anniversay date of being dx'ed with PDD. You prepare and no matter how hard you try to grasp it, it takes time to grieve. All of us here have had to do this. This is a touchy time in your life. Don't see it as being weak, you are just reacting how anyone would.

As for the baseball playing, you learn to dream new dreams for your child. This children are AMAZING in here. They will surprise you like you have NO idea.

This is a great place for support. We will ALWAYS understand your experiences and support you when you need it.

Take care of yourself. Your child is going into a important time getting all the services into place. This will help him alot. I saw progress in my boy. Heck he graduated from OT this week--took a year, but non the less, he made progress.

((hugs))

Nora

iVillage Member
Registered: 10-03-2006
Wed, 06-13-2007 - 9:32am

Christine,

I remember D-day (July 19, 2006) like it was yesterday also. I didn't expect an ASD dx, but it had been my worst fear for months. It's funny how unprepared I was.

DD was so horrible for that eval. She had no sleep the night before, we travelled 75 miles in a storm and stayed at my parent's house. There was no electricity or air conditioning and it felt like 100 degrees all night long. DD couldn't do the simplest task for the Dev. Ped. and kept tantruming thoughout the whole appointment. My mother was with me and agreed Gabby just wasn't herself.

The dr sat me down and told me my DD was profoundly Autistic. I felt like someone had ripped my heart out of my chest. I had already been crying from DD's behavior but when I got the news I was in shock. The Dr. told me that she's had some parents tell her that they'd rather hear a cancer dx, because at least something could be tried medically and there was always a chance of remission. In a way, I understood what she meant.

Once I got past the shock I went through all the stages of grief for several months. I felt like someone had died. I coped by informing myself and being pro-active. I over-researched and then had to stop because my head was swimming with so much I thought my head was going to explode. We were already in EI so her therapists actually became MY therapists to help me cope. I had already been on anti-depressants but then had my dose increased just so I could function.

Then I stopped and realized Gabrielle was still the same child and that nothing had really changed. She was not the "label" although, I realized that the dx opened her up to more services and at least I had an answer.

Almost a year later, my non-verbal child has a vocabulary of 200+ words. She can express her wants and needs without tantruming, (most of the time). She no longer hits me and her eye contact has improved dramaticly. I've learned how to tackle her sensory issues and we've seen major improvement. Before the dx, she couldn't even point or label anything. She is a happy, bright, affectionate child who has so much potential. These days, I am thankful we got the dx, because we now have a plan of action.

We took Gabby for a second opinion in Nov. and this Dr. said she seemed more like a PDD-NOS. I'm pretty sure that eventually her dx will be changed to reflect that. Right now it doesn't matter. We are getting ready for special ed. preschool in the Fall.

I really feel for you right now. On one hand, finally getting a dx puts everything in perspective and now your son can get proper treatment. On the other hand, nobody wants to hear their child has any form of ASD. Just remember to give yourself time to experience your emotions. It's a rough road but it's not the end of the world. Your DS is still the same kid he always was and you love him just as much. You will become a much stonger person and realize you are capeable of so much more than you ever thought you could handle.

Anyway, thanks for sharing and letting me ramble. I'm happy that you at least have some answers now. Please keep us informed on your DS's progress and realize we are all here for you.

BIG HUGS
Dizzy

iVillage Member
Registered: 08-10-2006
Wed, 06-13-2007 - 11:10am
Thanks Dizzy for sharing your story. I think coming here first helped me prepare a little bit too. I am having dinner with my Mom tonight and I think that is when it will really hit me, you know how Mom's tend to bring all that stuff out in you and you have a really good cry. My Nick is still my Nick. I dont look at him any differently to be honest. I think the AS brings out alot of really cool things in him and I have learned alot of really unique things from him. Did you know that a potato bug really has 3 different colors?? Yes what he has, now has a name, but he is still my Nascar lovin, monster truck stomping, dig in the dirt, won't get in the shower, hates to brush his teeth, loves to have his back rubbed, sweet, insecure, plays it tough, but so tender and fragile baby boy. I love him more than life.
Christine

< < Photobucket

Christine