I'm Giddy!

[JAG10]

This is SUPER, Peg!!!

 

Is there an elevator in the building where she attends ESY? If so, maybe you could ask the principal for access in the afternoon when others have left for the day?

 

What I loved about the eye contact is that it is meaningful eye contact and not "what color are my eyes" contact.

[kimballot]

Peg- you leave me speechless! I am so in awe of you and Allie. Congratulations and please keep us posted!

[peglem]

Thanks, Everybody, for celebrating with me. I'm definitely feeling the love!

 

But I have to say, I take very little personal credit for this. For years and years I pushed and tried anything and everything to get help for my child...and I went through this period of time where I was furious w/ God for not miraculously healing my child. But for all my efforts (we're talking 10 years here!) nothing I did worked and she got worse and worse. It was only when I made peace with God, admitting that I was powerless and "agreeing" to just follow this journey wherever he wanted us to go, and accept whatever was in store for us....That's when things began falling in to place. My anger dissipated and the journey led to ACN (before PANDAS had its own forum and most of us were posting in tourettes/tics). Its only been the last year or so that anything has been effective, and that coincides exactly w/ the my spiritual journey, So, I'm giving the credit to "a higher power." All I did was try to follow his guidance. Okay, I'll give myself a little credit- it was very hard to give up control- big struggle for me, but that's it. Everything else just unfolded the way it was supposed to. I know there are some people here who are not believers, and that's okay- just hope I didn't offend you with my beliefs.

[lfran]

That is wonderful. I am so happy for you!

[Fixit]

Thank you peg...for sharing all that you do with your child with us...

i am sure your story will/is/are footnotes in alot of parents stories as we go forward in talking with doctors in figuring this thing out...

And most of us here know the thing that you said "this may be small"...we actually know how huge they are...

So exciting!!!

God Bless

[wornoutmom]

So so happy for your family!!!!!!!!!!!!!

[KaraM]

Thanks, Everybody, for celebrating with me. I'm definitely feeling the love!

 

But I have to say, I take very little personal credit for this. For years and years I pushed and tried anything and everything to get help for my child...and I went through this period of time where I was furious w/ God for not miraculously healing my child. But for all my efforts (we're talking 10 years here!) nothing I did worked and she got worse and worse. It was only when I made peace with God, admitting that I was powerless and "agreeing" to just follow this journey wherever he wanted us to go, and accept whatever was in store for us....That's when things began falling in to place. My anger dissipated and the journey led to ACN (before PANDAS had its own forum and most of us were posting in tourettes/tics). Its only been the last year or so that anything has been effective, and that coincides exactly w/ the my spiritual journey, So, I'm giving the credit to "a higher power." All I did was try to follow his guidance. Okay, I'll give myself a little credit- it was very hard to give up control- big struggle for me, but that's it. Everything else just unfolded the way it was supposed to. I know there are some people here who are not believers, and that's okay- just hope I didn't offend you with my beliefs.

 

 

First of all - congratulations to you and your daughter. How wonderful for you both. Exiting, heartwarmwing, encouraging.

 

On a spiritual note, I can't say I am the biggest "believer" in the world. But we all need to find hope where we can. For me, your words do not offend at all.

Thank you for sharing your story.

Kara

[trggirl]

Just amazing!!! Peg, why don't you write a book. Your story is amazing and doctors need to hear it.

[Mary M]

Your story is so incredible. As a mom I can imagine your elation...and as a former special education early intervention teacher I wonder what it must feel like for Allie...imagine it--she was looking at you, with the intent and purpose of seeing you, engaging with you, interacting with you, communicating with you in a meaningful way. From Allie's perspective...I am speechless.

Mary

from Michigan

[Megs_Mom]

I have been crying off and on for the last few days, and now I find this post & am weeping again! I could not be happier for you.

 

Love to you and Allie - so joyful for you tonight.

[sf_mom]

Wow!!! Fantastic News.......... I look forward to further positive updates.

[peglem]

Here's what I wrote last week:

Posted 19 July 2010 - 03:20 PM

 

We are 10 days out from Allie's 3rd IVIG (I'm only counting the high dose ones, which we've been getting every 4 weeks). We don't really have a baseline to measure improvement against, since this started so young, so we really don't know what to expect as far as improvement. But, we no longer feel that an exorcist would be a reasonable course of action!

 

With her anxiety so greatly reduced, I've been thinking I need to start working on overcoming some of her issues. But, I've been afraid to confront her fears because I've become habituated to the monster that used to emerge. Well, we were having a pretty good weekend. When Allie was taking a bath Sunday, she poured cups of bath water all over the floor- LOTS! I got huffy and made her help clean it up- She does know better and this was ordinary mischief, not compulsive. So then we had a bunch of wet towels to put in the washer. But, the washing machine is something that Allie has been deathly afraid of (we have not been able to do laundry while she's home for years!). Well, I decided it was time to deal with it. She got upset when I told her she'd have to help wash the towels. I told her I knew she was afraid, but she can't let fear get in the way of doing stuff she needs to do and I'd wait until she was ready. It took her about an hour. When we got the basket of towels to the machine- she immediately unplugged it, slammed the lid shut, and opened the dryer to put the towels in there. So, I gave her the soap to put in the washer, then plugged it back in and started it filling. Every time she reached over to unplug it, I handed her a towel to put in. Once the load was in and washing, she was beaming with pride! It was wonderful to see her, and guide her in overcoming this fear. I'm sure it will take more loads to completely extinguish the fear, but I know we can do it!

 

I need to figure out a way to do this with elevators, which is even a greater fear (just seeing them, we don't actually ride in them!). I've got to find an out of the way elevator that is seldom used.[/quote]

Here's what happened today:

 

Allie brought up "elevator" on her comm. device. I asked her if she wanted to learn how to go on the elevator and she signed, "yes." Then on the comm. dev. she said "fire engine". I understood that she was expressing her fear of fire on the elevator.(I think she reads the signs that say do not use in case of fire and thinks using them causes fires) So, I asked if she was afraid of a fire on elevators. Again, "yes." So, I explained that we will not get on an elevator if there's a fire, and that elevators do not have fires. Then she said, "Humpty Dumpty" (you can see where most people do not normally understand her communication) so I asked if she was afraid elevators would fall down?(Humpty Dumpty had a great fall) "yes". I told her they make elevators so they will not fall, even if they get broken. She seems ready to try...I'm not sure I am! Wow, this kid really wants to get over her fears! And wants to start with the biggies!

Last meeting with the RDI coach, we talked about dealing with the elevator issue and we have a sort of plan...I think we need to accelerate it!

[Mary M]

I think you need to find an elevator...and quick. How about a one story office building to just practice up and out, then down and out. Her progress continues to be something....

Mary

from Michigan

[matis_mom]

That is awesome! It is so sweet to see the way you understand her, makes me want to cry...

How amazing that she is bringing it up. I think after that washer experience, the sky is the limit!

Edited July 27, 2010 by mati's mom

[Kristy S]

It's so amazing to be able to share in your joy! I really hope all of us can have that feeling someday soon when we look at our children and see how healthy they are "now." Congratulations and best wishes for even more wonderous days!