Tuesday, January 11, 2011

Noah's AZEIP Screening

Noah had his early intervention screening today. The good news is, I'm not paranoid like everyone said I was. The bad news is, I'm not paranoid like everyone said I was. She was here for almost two hours going over everything Noah does (and doesn't do) assessing where he should be for his age. They put all the data on this chart that goes from black, grey, then white. Black is really bad, grey is okay, then white is where they should be. Noah was in the black on EVERY single area they tested. Every. Single. One. Two of them he even had a zero for his score. To be eligible they only need to have a 25% delay in ONE area, and he's at a 75-100% delay every one. She said he'll probably end up on DDD like Kassidy (which is good) and that she was amazed how observant I had been. I told her how his pediatrician felt it was no big deal and told me to wait until he was 2 to do anything (though he has not made any progress in almost a year) and thankfully she referred me to a pediatrician that knows what to look for and is proactive about this. I'm just glad that finally someone that is listening so I can figure out what the next step is for both the kids. Everyone kept telling me to wait, wait and see what happens. Well I'm done waiting. I waited 3.5 years for Kassidy's diagnosis when I KNEW there was something going on and I'm not going to wait 3 more years for Noah. Soo someone is coming next week to do another screening and we'll go from there!

Monday, January 10, 2011

because everyone is an expert - just have some tact

I've been keeping something bottled up inside and quite frankly I need to voice it before I erupt like a volcano. First I need to make something very clear. Never is it ok to talk about someone elses child in a negative manner. Ever. I do not care if you had good intentions, or if you think you are an expert on everything under the sun because you read an article online or in your class.

Recently I was told "After Kassidy's diagnosis everything made sense. All the issues she was having playing with other kids and the issues she was having with everyone else. The way an autistic child plays with another child is very different from the way a normal child plays with other normal children. But I just figured you never let her play with other kids."

At first I said, should I be offended? Kassidy IS autistic, is what she said really that wrong? Listen. The very first thing I want EVERYONE to understand is I hate the word "normal". You will never hear me say normal. I prefer "typical". My child is not abnormal, she just does things differently. Second, I'm fully aware that the way an autistic child plays with other children isn't the same that typical children play. I live this everyday, I promise you I don't need it thrown in my face. It should be understood that although Kassidy plays different, she still loves other kids. She loves to be around them and they have fun together - yes, even the typical children have fun too.

The bottom line is, no matter how you look at it, this is talking smack on my child (and my parenting if you count the snarky comment about me supposedly not letting her play with other kids.) Lets go back to preschool people, if you don't have anything nice to say don't say anything at all. If the intentions were to make me feel horrible, then I applaud you as you've succeeded. The only thing that needs to be said about my daughter is how sweet, silly, and hilarious she is. And really, that goes way beyond the fact that I'm biased. She is the most carefree, life loving child I have EVER met and if her autism has brought her any advantage thus far, it's that she is completely oblivious to how cruel people can be.

I typically stay away from conflict. I don't participate in breastfeeding vs formula debates, home school vs traditional school, stay at home mom vs working mom. What is right for one family isn't right for another. So many times I hear this competition about "my baby rolled over first, got their first tooth first, and hes 6 months old and says 300 words why doesn't YOURS!" The one thing that goes all across the board is no one needs to be talking trash on anyone, especially children. That's the one thing that is right for everyone...

Saturday, January 8, 2011

government agencies do their job sometimes

It's been awhile since I've updated on Kassidy. Certain events had transpired with her doctor and the DDD (Department of Developmental Disabilities) and I was too upset to even discuss it. The DDD wanted to put up a fight with me that one of Kassidy's papers said Pervasive Development Disorder that was dated in September even though there was a paper dated in October that said autism. She also had a fit that a nurse practitioner had seen Kassidy even though the psychiatrist did afterward and concluded diagnosis himself. I also came to find out that even though the dr had no problem giving me a verbal diagnosis he refuses to write a formal one until Kassidy is given this extremely extensive psych eval. The problem is only ONE doctor in all of Arizona will perform this evaluation on a child under the age of 6 and their office wont return Kassidy's case workers calls. Frankly at this point I felt it was a lost cause and was completely expecting a big fat denial in benefits for her.

I have to admit I was angry. Angry at the whole process, that there has to be a certain severity for anyone to do anything about it. I had fought so hard and long for this diagnosis and then here I am thinking I can't even get help for her. And really why was I fighting anymore? Just when I had put it out of my head I randomly received a letter from the DDD. "We are pleased to inform you that Kassidy Fisher has been determined eligible." I was literally shaking I was so ecstatic. FINALLY something was coming out of all this.

The next day I received a phone call from the DDD caseworker wanting to come to the house and start the next step. She informed me that Kassidy is approved until her 6th birthday, but she just needs a formal diagnosis before then to continue benefits after that. I am so happy and Kassidy deserves this so much. I really was losing hope that anyone actually cared about these kids and looked at them as anything other than a paycheck. I'm pleased that someone is actually doing something for her and cares enough to get the ball rolling!

On a side note Noah is exhibiting certain red flags that Kassidy did at his age and her case worker suggested we contact the early intervention place. They are coming on Tuesday to screen Noah and I'm really nervous about it.