updates on my sweet boy

I watched the Temple Grandin movie last night until 1 a.m. It made me cry and made me proud. It gave me hope and gave me courage. I saw alot of Damian in the character and thought about the challenges he will probably face in the many years to come. It worried me.

Then I realized I haven't updated about Damian on here in along time. Here it goes...

Some of you know I have been trying to get services for Damian through the regional center, After sending in more assessments, even the one from M.I.N.D, they denied him again. I have the appeal papers in front of me and no idea what I'm doing.

There is a fine line when it comes to using assessments from research studies. But I know if I fight this we may really win.

I contacted Area Board III and have become a client of theirs starting in September. That won't really help me in the next 30 days which is all I have to appeal. They will advocate for us, accompany us to all meetings and they know the law. They are already in the process of taking the regional center to court. So this will be a HUGE step for us.

It gets so frustrating trying to convince people that Damian would benefit from additional services. I know that intervening now would be crucial for his teen years and beyond. I still beat myself up for not listening to my gut and getting him help right away when I noticed something wasn't right.

So all I can do is move forward and we are.

I don't think anyone realizes how hard it is for Damian to appear "normal." Who even knows what normal is? Yes he will smile at you, engage in a little back and forth conversation and appear that he gives a hoot about what you are carrying on about! But inside he is about to explode. It is very exhausting physically and mentally for him to hold it all together. He knows in a sense how he is supposed to act socially but he needs so much help.

So I am going to try and get an official diagnosis from another psychologist. I'm burned out on professionals. We see one of his docs next week and hopefully we can pinpoint the shift in his behaviors. I think some of it is because he is out of school and the routine is not there. So I'm working on being better at his schedule at home.

This kid amazes me daily. He got his brothers and sister there breakfast this morning, he invited his brothers into his "boat", and keeps telling me he is so happy I am his Mom and he is with me all of May.

He is rocking out to Rockband and researching everything he can on tornadoes. We watched Twister I don't know how many times. He is getting better at figuring out what he needs when he is over stimulated. He likes to wear headphones in the car so he can block out the loud noises and annoying behavior of his siblings. Smart kid!

I still don't know all the things I should to help him. I learn along the way and research every day either reading or the computer. It is what I think about 24/7. But I can't forget my other children and sometimes it shows. Brandon knows Damian is special but he still needs my attention just as much as all the other ones.

So the next step is searching for another psychologist and trying to get some legal advice from the Disabilities Rights office. Wish me luck.
....xo