- I am not a physician
- Grace (our daughter) has complete ACC and no other issues, so I can only speak to those parents or family members with the same diagnosis
- We do NOT live in denial, we think about this diagnosis all the time, but Gracie really, REALLY has no symptoms.
Okay, so I want to keep this short and sweet. Again, the reason why I wanted to post SOMETHING positive, is because when we got our news about our then 4month old infant, I was very scared and I searched the Internet. I became part of the ACC network and I prowled all the discussion boards. I did everything I could to be a part of her diagnosis, to really understand it. All I did was get more and more scared. No ones kid was "okay" everyone seemed to have kids with other illnesses involved... no one wanted to talk to me about the fact that Grace COULD be okay.. like Maybe? Like a little bit OKAY? I remember talking to one mother of what the boards were calling "High Functioning ACC" And I told her I thought Grace was really fine, and she told me that it was impossible... that she might "seem" okay but she wouldn't ever really be okay.
Ummmm.. are any of us really okay? Grace is better behaved, more verbally advanced, and better with social skills than our other 2 kids (I wonder what could be wrong with THEM? :))
Grace was diagnosed at 4 months after she took a spill and hit her head. She was fine but it is state law in CT to have babies between 2 and 6 moths with head bumps to get scanned... the cuff was too high on the scan so they sent us for an MRI. The MRI found the ACC.
As soon as we noticed she seemed to be doing all the same things that our other kids were doing, we began asking questions to the pediatrician who agreed with us that she was meeting and surpassing every set of "developmental landmarks". As a matter of fact he, at one office visit, described his frustration with the fact that we were receiving all kinds of solicitations of help from the state even though Grace was doing great, and there were kids he KNEW there were issues with (speech, motor, etc..) that couldn't get help because they didn't have a diagnosis on the books.
The neurologist told us there was nothing wrong with her development when she was one. The pediatrician who we LOVE told us nothing was wrong with her. When she couldn't walk by 17 months I cried (thinking the ACC had finally reared its ugly head) and called Birth to Three who quickly came out to our house for physical therapy...only to find out she had flat feet and needed arch supports. She walked just fine after that. No ACC involved. She has perfect gross motor skills, and super perfect fine motor skills. She speaks, she eats, she jokes, she loves, she is amazing (of course she is! she is ours!)
There was even a NOVA special on this. But even NOVA said there could not be a person with ACC who was okay. They did all kinds of tests about "subtle behavioral issues" and eye contact reads blah blah... I was so upset. So I started playing with Grace to see if she was picking up on social cues. I would make a mean face but tell her in a soft sweet voice to come and give me a hug... and she would laugh...! She knows subtle social behavior more than my other two do! And I also checked her empathy levels. Just fine by the way. When I yell at her big sister and send her to a time out, Grace is always there for a hug and a show of tearful support.
Look, the point is, this is our story...not yours. Every story is different. I was just FED UP with everyone who really was unwilling to tell a good story. There is nothing wrong with a happy ending. I truly feel for the Parents who are not so lucky... but for those of you out there who feel your kids with ACC might just be okay, even brilliant, this is a place where you can hear that I, for one, believe you.
For those who read this who have children who are not okay... The networks out there are incredible. Use them.
Any way, this is not a blog that will be updated, but I will check posts and if you want to contact me you can just request it in a post an I will send you my email....
****Please be kind in your posts, I am aware that there are scared angry parents out there who have kids that are really suffering with this. I am not trying to offend or upset anyone, I just think every one of us has a right to express our stories and opinions*****
If you are reading this it is because you searched ACC. I Truly hope your situation is like ours.
Best,
Suzanne Palmieri
