Drained

As I write this blog at 12:35 am, I am exhausted, drained, just done...

I am so excited to be writing this blog and to be having a page on Facebook. I just want to help people. I want to help people that live in or near my community find resources to help their special kids. Originally I was going to keep all my quirky posts on my other blog:  I Am A Work of Art (with a messy room), but I have decided that they need to be 2 separate blogs.

I am frustrated with waiting for appointments, evaluations, IEP's. All of this is so confusing and quite frankly, I am feeling like I want to throw in the towel.

So far, we are awaiting a diagnosis of PDD. This is going to be further evaluated Friday, December 14, 2012 with an ADOS test. I found a private practice psychologist that will administer the test! We went to a well known facility in our area only to be told that because he communicates he has no autism. I am calling BS on that one...Correct me if I am wrong but isn't there different levels of the spectrum; some are verbal and some are non-verbal.

I keep thinking to myself that I am crazy. Am I really seeing these things? I keep going over everything again and again. My brain says this isn't what that is, it's just him being quirky. The conflict? My heart keeps telling my to push forward, my child is a little different, he has issues, these issues are pointing to the "A" word, and I will not rest until I get a diagnosis.

I am a fighter. I always have been. I don't give up and I won't give up. In fact, my favorite saying:

For now, my goal is to take it one day at a time. My next goal is to get on here and open my big mouth to help others!

Please share with me any resources or ideas. We Mom's (and some Dad's too) gotta stick together.

My Quirky Superhero

quirk·y/ˈkwərkē/

Adjective:	Characterized by peculiar or unexpected traits: "quirky charm".
Synonyms:	peculiar

More info »Dictionary.com - Answers.com - Merriam-Webster - The Free Dictionary

Yep, that's my boy! He definitely has quirky charm! When I first thought my son had a problem, I didn't understand the exact problem. So, me being "the one who researches mystery illnesses and issues with google", came up with nothing. But I knew in my heart, that something was different.

My son was 18 months old and he was not acting like he should at that age. I brought this up to my husband and told him about how the pediatrician wanted us to take him for some evaluations. I should have listened to my gut feeling and not my husband's advice.  He said, "There is nothing wrong with our boy. We do not need to have him evaluated for anything. You are just being paranoid." From about 18 months to 3 years, he continued not to talk much and avoided eye contact.  He played yes with a lot of imagination but it was as if he was in his own world that I refer to fondly as "Eli World". His play was very repetitive in that he would pretend he was inside of a Dora cartoon, and when he would talk, it would be either singing Dora songs or repeating dialogue from the many Dora shows. Now, he watches more than just Dora but each week he gets "hooked" almost like how the old record players used to skip. He would often pull out cans of veggies or soup out of the kitchen cupboard and would stack the cans to make "Big Towers!".

Eli requires a strict schedule and what I mean by that is any change in routine puts him into a tailspin.  He becomes quirkier. I've also noticed his "quirky behaviors" come out when he is really tired or overstimulated. Often, (this even goes back to when he was younger) he will hum to himself and/or will spin in circles flapping his arms. He does not maintain eye contact at times and when you take pictures of him he often will avert his eyes to a different direction. He has no impulse control at times i.e. jumping off of the top of the couch to the floor or running out the front door every morning because he thinks that because his shoes are on and he is ready that he can just walk out the door without Mommy or Daddy. When it gets to be too much for Eli, he hides in many places; under the kitchen table, in his room under a blanket, behind the bushes to our church entrance or the tall ornamental grass in the summer time, and yes even behind the tents set up for VBS. But that's my favorite quirky boy, what other choice do I have but to love him?

Fast forward to October of last year, I was able to get him an evaluation through our school district while awaiting various appointments through Children's  Hospital. The teachers agreed that something was off with Eli but they would not tell me their honest opinion because they are not doctors. Their suggestion was to go through the speech evaluation first thing and then get back in touch with them. They even promised that they would be seeing Eli again soon. Another month goes by and we finally got the speech evaluation. His diagnosis was a speech and language delay; he tested at a 2 year old level (he was 3 years and 4 months at the time of testing). That alone got him his IEP and a spot for preschool. However, Eli did not start school until March, 2012.  There was other paperwork and also an appointment with the DBPP or whatever that department is called at Children's.

January, 2012 we met with a nurse practitioner at Children's with Eli, my husband, and myself. She immediately dismissed the notion that he could be on the spectrum of Austim. Her exact words to me at the end of the appointment was "He does not have Autism because he communicates with me and he is communicating with you." I was enraged! I held it in and did not become unglued. I just smiled and said "While I appreciate your opinion, I do not agree with you and I would like to do some further testing. And actually, would like a cognitive test done."

February, March and April of 2012 is a great big blur to me when I think back to everything. Eli was still quirky and still the same. During that time we endured 2 parts of the cognitive testing.  The parent session where it was pretty obvious to the doctor that my husband and I did not agree about Eli but we both agreed there were some problems. Then came the 2nd part, Eli's actual evaluation. Because this area hospital and this particular department is so overloaded with patients, I was not able to get the results until July! His test was done in April!!! So what happens next, I MISSED THE APPOINTMENT! Ugh!

I ended up rescheduling and had an appointment scheduled for August 28th.  I go to the appointment that morning and I end up getting stuck in over an hour worth of traffic (didn't realize it was UC's first day back!) and I am calling the office from 8 am to 8:10 am; nobody answered! Their phones were not on until after 8:10 am.  So I call and ask if I will still be seen.  The customer service person that answered the phone was not nice about it and gave a nonchalant, attitude filled response "Probably." So I say, "Okay, let's see if I can make it on time." So I call back at 8:20 am and got the same person. I asked her if I could still be seen, explaining through tears that I needed to have this appointment because of his IEP and I can't take anymore time off of work. She says "HOLD ON" with yet again, an attitude. I am crying now even harder and I say out loud to myself "YOU ARE SUCH A FAILURE! WHY CAN'T YOU GET ANYWHERE ON TIME? WHY ARE YOU SUCH A BAD MOM?" Finally, the CSP gets back on the phone, "The doctor will still see you if you get here before 8:30.", with the same attitude problem as before. I say to her, "Thank you so much for checking on that for me! And I will get there by 8:30." Yay! Something might just work out. I pull into the parking garage and it is 8:25.  I run out of my car and dash to the elevators. I get up to the 3rd floor and run through the doors and go to the automated check in desk and fiddle with that and then it says "You must sign in with the receptionist if you are past your appointment time."  I turn to the CSP and say "I'm finally here!" She gives me the look (you know, the I have the power kind of look) and she says, "I'm sorry but I don't think you can be seen. It's 8:29 but let me go check." I am devastated and start hyperventilating and the sobbing cries come back along with the CSP and she says"I am sorry but you can't be seen today." It was like the world came to a brief stop, like a water pot getting ready to boil over and then BOOM! I became unglued completely! I screamed at her, "It is 8:29 am and I am here before 8:30 am.  This is the worst service that I have ever encountered. If this were at my office, the patient would be seen!" She says, "Hold on. Let me go get Dr. so and so's nurse."  My face is red and I go out of the waiting room back into the hallway slamming the doors and punch the wall. At this point, I am sobbing, hyperventilating, and have snot, lots of snot running down and out of my nose! (Not one of my finer moments in life!) The nurse comes out and I completely explode on her, pouncing on her like my cat does with her catnip toys. (not physically but verbally) She really was professional and kept her cool so well. My temper tantrum did not work and I think at that point someone may have called security. I left.

The humor in all of this... I was about to start "Unglued" with my Lifegroup at church the very next day and the OBS through Proverbs 31 in the next week or 2. (I really could of used this study that day!)

A few weeks later, I sucked up my pride and went back for another appointment this time with my BFF for moral support on September 17, 2012. I even apologized to that poor nurse that I had pounced on! We are in the appointment and we are going over the test results, mostly average or above average. Now, this doctor that I am going over the results with has NEVER, I repeat, NEVER, had a face to face appointment with my son.  She finishes with, "At this time, my colleagues and I feel that your son has no Autism." I should have been happy with that. Oh No! I looked at her and smiled sweetly, "Well, I don't agree with you and your colleagues. That is why we are seeking a second opinion." Her diagnosis was disruptive behavior disorder. My son does not have disruptive behavior disorder. Sorry but he does not. I am not in denial. My gut feeling is telling me to push forward with a second opinion.

My point being in all of this....I WILL NOT GIVE UP! When it comes to my kids, I will be their voice and their advocate until the day I take my last breath. I will fight for them.


***I forgot to tell you...I have an appointment tomorrow (Thursday, 10/17/12) with Eli's pediatrician and it is the doctor that handles the behavioral and autism side of the practice. Please say a prayer that I can get him to listen to me and that I can get him to understand that Eli's problem is not just another behavior problem. At least Eli still has his IEP....