JC's sister "A"s thoughts about life with her brother...

Hi. My name is Angel. I have an older brother who has a lot of issues. Some of the things that really bother me is when he bugs my friends, when he interupts me when I'm playing my games and stuff, when he tries to boss me around and sometimes pushes me. I get mad, but I try to walk away when he does that to me. Sometimes, JC can be very frustrating. Things I like about JC is when he is nice to me, every once in a while. He plays the wii with me sometimes or we play lacrosse or basketball together. I don't like it when my parents give so much attention to JC and I feel left out. Sometimes, I try to get my attention too. Sometimes, I'm just mean because I don't like JC getting all the attention, even though its not a good way to get attention. I understand that he has problems but I  hope someday I'll get a break from him. I hope he gets better someday too I guess. What I want people to know about me and my feelings about JC is how frustrating it is to live with someone like him. I do love my brother and wish he could be normal.

The whys, why nots and so whats!

Look at those CUTE kids! Love them!!

So, we finally after 10 years of multiple doctor, psychiatrist, psychologist and specialists visits have gotten JC tested by a Neuropsychologist! It was never covered under our insurance. Funny thing is, he was the second doctor to spend but 15 minutes with JC in the last 2 months and tell us he has FAE or ARND, just by looking at him and talking to him for 10-15 minutes!!!! WHY we are asking did nobody else ever tell us they thought this about our son?? We have spent so long wondering why none of the diagnosis' that JC's been labeled with don't ever seem to cover his whole self. They don't ever seem to fit him right. It's because once we looked at the "Alcohol related Disorders" ARND, FAE, FAS - it fit! It is frustrating that I, in all my research online and with doctors, failed to ever see this. I mean, we all knew that his biological mom probably drank and used drugs, we've always put that on all the billions of pages of paperwork we've filled out over the years, but still no one ever stated this diagnosis to us???? It is so evident now that JC suffers from most likely bipolar (or some other mental health mood disorder) AND FAE! and of course with that comes the ADHD that we've always dealt with. 


So, why?, this revelation may not change the course of medications or the way other people see him, but for us, as parents.... it is big. It has given us understanding in his abilities and disabilities. It has given us time to prepare for JC possibly never being able to live on his own, at least not without help. It has given us the opportunity to get more services to prepare him for getting a job and life skills he will need. We only have 4 more years to really prepare him for the real world... we want to do it right. We can't wait to put some of these services into place at school and home to see if JC's level of frustration goes down, and with that, maybe we'll get to see the real JC again. He's got such a great sense of humor and really loves animals and I am so hoping and praying that this side of him will show itself more, with less frustration and having more room for it in his daily living. 


Pre-Algebra , so what! My son NEEDS basic math skills repeated over and over again. Why is he in a pre-algebra class you ask? Because the school thinks its better for him BEHAVIORALLY (i.e. easier for them) because the other kids like him are not in this class, they are in the basic math class!!! Oh, and because they think JC is defiant about learning math. Ummm... now we have proof that no, he is not defiant about it, he just CAN'T do it. So, it frustrates him and leaves him with nothing at the end of the day because he's used up everything to try and process what we have all been pushing on him. So, in this way, I'm so glad to have gotten a diagnosis - it may be developmentally disabled, and people might judge him differently along the way... but at least he will get some more help! And us too!! 


Why  not give him what he needs rather than what society and schools and "supposed educators" think he should have so THEY look good. I want my son to have the good! Why not go up against those who think they know so much more about my son.... for this reason, I am thankful that God gave us the opportunity to get him tested again.


Well, sorry for the rant, but I am tired... so tired... of seeing the bad. It's time to start noticing the good!


By the way, here is a little snippet from a mom with a kid with FAE - I FEEL LIKE HER!!! This little part taken from some other interview with her, describes what I feel like a lot of days!!!



"People may not see FASD when they look at my son's face, but I see it. I see it in the way his eyes flash in anger when he is frustrated and I see it in the tears that pour down his face when he is trying so hard to understand his math problems. I see it in his blank stare when he shuts down after working so hard in school all day, a place that has labeled him as lazy and defiant, and I see it in his silly smile when he is being impulsive or inappropriately friendly with strangers.
"FASD is also visible on my face and on the faces of other moms and dads...it is spelled out in worry lines. For some it is in the tears that flow in overwhelming grief. These are the facial features of FASD that do not appear on the FAS diagrams. FASD is often called the invisible disability, but I see it everywhere I look...and it doesn't go away just because I close my eyes."
Kari Fletcher, Adoptive Mom to 2 children with FAS and advocate/trainer at MOFAS, the Minnesota Organization on Fetal Alcohol Syndromehttp://www.faslink.org/