Tuesday, May 28, 2013

Environment, Love, and Routine are all an autistic child needs.

Well, it has been far too long and there is A LOT to update about. I feel as though I have neglected my blog, my friends, my family, my life, my pets, and everything else while I tried to finish school. I have finally graduated and have two of three state boards behind me, so it seemed like a good time to sit down and get some of this updated and out there for those that have asked, commented, or care to know what is going on. This post, as many others, will have happy feelings mixed with frustration, anger, and downright "from the gut" feelings. I may offend some people, but quite frankly.... MY blog about MY child from MY heart. Don't like it....check yourself or don't read in the future.

I will start by saying that Roman is attending speech and occupational therapy now. Each therapy is once a week for 45 minutes through Tallahassee Memorial Pediatric Rehabilitation Center. Some sessions I feel as though he is doing amazing, while others I feel as though I have wasted my time. It is very difficult to change his routine one day a week and expect him to have a clue what is going on. The days that he goes to therapy are always a struggle, some more than others, but none are enjoyable. Example: this morning Ramsey took him to therapy because I had to take one of my state boards. Ramsey said that Roman was great there, as always. (It's like he performs for them and shows off how wonderful he can be with only one or two screaming meltdowns due to transitions) When he had to come with me to go to school, the fighting, screaming, ear covering, kicking all started. He screamed in the car. He unbuckled three times on the way. He sat at the gate screaming and kicking the fence because the kids were outside which meant that I could not do the typical routine of him opening the door, we walk in, he closes the door, he runs to Ms. Vonda and gives a "hey guys!" then happily turns to tell me bye. These days and these moments of meltdowns are the hardest for me. They really rip my heart out of my chest. As I was finally giving up and deciding that it would just be a mommy and Roman day, the occupational therapist walked up to us. (I will get into that later) She began talking to me and asking what was going on. I told her it was the first time he had done this at his new school (again, you will hear about THAT shortly). She offered to take him into the sensory gym and help with the transition. Of course, Roman was absolutely A-OKAY with going to the swings and being tossed around on the pillow mats. I am assuming that he came to grips with being there, because she didn't have to call me and update me. All that to say, we still have our moments, but to have one REALLY BAD day a week is nothing compared to where we started! Gotta take the good and cling to that during the not so great and downright horrific moments.

Roman started a new daycare on April 1. The daycare that he first attended, beginning at just 1.5 years old quickly turned to a place that I would not let my puppy attend during the day. Let's start from the beginning. Back when this nightmare started, the director of the preschool came to me. She informed me that Roman seemed to be a little delayed with his speech and wanted to know if I was willing to let him be evaluated for speech therapy. I agreed. Before I knew it, Roman had a speech therapist coming to the school once a week for an hour to work with him. As you probably remember, she ended up suggesting further evaluations and testing to have him evaluated for autism. Immediately, the director began flooding my head with how autism is overdiagnosed these days. These doctors are just in a rush to throw that out there instead of giving the children a chance to catch up, blah blah blah. FINE! I get it and I understand that that may be YOUR OPINION but look at the checklist and you will see that my child walks on his toes, lines things up, covers his ears, is very routine and structured, doesn't adapt well to change, has meltdowns NOT tantrums, etc. This continued to be a battle that I just chose to bite my tongue with and not share my thoughts. I respectfully listened to her ideas, and kept my thoughts inside. Roman began his evaluation with Dr. Kubiak, a psychologist, to get the "official" diagnosis. After being given literally A BOOK with 12 different packets of over 100 questions, I felt defeated. I literally cried as I filled them out. Does my child talk about suicide? Does my child often state that he wants to kill himself? Does he often state that nobody loves him? NO YOU JACKASS!! MY KID DOESN'T SPEAK THANK YOU AND HAVE A NICE DAY!! After finally realizing that I had to finish these papers and submit them in order to proceed with this, I sucked it up and did what I had to do leaving my heart in a million pieces in my bright green trashcan at the road waiting for Waste Management to come and shovel it into the big truck and take it to the city dump. Literally, I felt as if there was nothing left but brokenness. Okay, back to the daycare. It came time for "transitions" and Roman moving to the three year old room. I asked the director that he be placed with a certain teacher. She informed me that she had actually already picked out Mr. J (Not his name. I am leaving that out due to privacy and in case you are wondering the J stands for Mr, Jerk that I would love to punch in the face if I ever see him again) So Mr. J is now my son's teacher. I put my feelings aside and talk to Mr. J one morning. I literally put myself out there and let him know that I understand Roman can be difficult. I tell him that if he EVER needs me to come up there, he is more than welcome to call me. I also tell him that if at ANY point, he wakes up dreading coming to work because of my child, I want him to tell me so we can make some changes. I made it VERY CLEAR that I was easy to talk to and willing to help him in any way. Naturally, I have my friend that works there, and happens to adore my Roman despite his diagnosis, checking on my son periodically. I distinctly remember making a comment one day to her about how Roman hated going to daycare all of a sudden. He would scream when I turned into the parking lot, and he would sit at the front door kicking and screaming and bashing his head into the door every single day. Something didn't feel right. I told Shenika my concerns and she informed me that he always cheers up after I leave. We discovered that if she met me in the parking lot, he would go to her without a problem so we did that for a while. Then one day that wasn't good enough. It didn't matter if she met me at the door, in the parking lot, at my car....anywhere, he was REFUSING to go to daycare. I wanted to pull him out, but Shenika was convinced that it was just the transition and he really did seem to be happy there. Well, some more changes were put in place and Roman's class ended up in her classroom, but still with Mr. J. I will spare the details that make me sick to my stomach and sum it up with one incident. Basically one day Shenika texted me and told me to reconsider my decision. She told me that Mr. J was having Roman spend at least half if not more of his day in timeout on a daily basis. This infuriated me, as I had never ONCE been told he had a rough day. I was always told he was "great". The following day I Was told to pull him out ASAP. Come to find out, this is the story: a kid comes up to Roman who was playing in the corner by himself as always. The kid takes Roman's toy. Roman goes after him and takes it back. The kid goes and tells on Roman for taking his toy. Now, the teacher did NOT see the situation play out but my friend did. Mr J comes over, gets Roman and puts him in timeout. Roman begins screaming and lashing out and banging his head against the wall. Why? Because he CANNOT TALK AND TELL HIS SIDE OF THE STORY AND THIS IS WHAT HE DOES OUT OF FRUSTRATION!! What does Mr. J do? Oh, you know, he just announces that he "can't handle Roman's screaming anymore" and puts him in timeout....outside of the classroom.... Now, excuse me, but who the heck do you think you are?! I immediately find out, and within 30 minutes I am at the school to pick Roman up. I walk right up to one of his two teachers and ask how he has been. I was told "he is having a little bit of a hard time adjusting to the change in classroom, but he's adjusting and doing fine!" WHAT?!?!?! Needless to say, he didnt go to school the next day, and the following day he was withdrawn, fees were paid, and he was registered at a new school. The new school happens to be $240 CHEAPER a month, has a high percentage of special needs kids, has a sensory gym for autistic kids, and...... he gets therapy there weekly as well too! Speech occupational and physical therapy. Due to CHP being a ridiculous insurance to have for an autistic child, the daycare is doing his therapy pro bono until I get the company and plans switched. Very different from the borderline ABUSE that he was enduring at the other place. Yea, welcome to my last few months of head and heartache.

With switching schools, Roman's daycare is now approximately 35 minutes from me rather than 10. May not seem bad, but it is definitely NOT convenient. However, I will always do any and everything I can for this sweet boy. My friend Holly has stepped up and been an amazing part of this chapter of life. She picks Roman up daily and takes him to her house until Ramsey or I can pick him up. Her and her husband have spoiled the kid beyond belief. They work on flashcards with him and have him saying new words. Jeremy lets him help with the garden, and even let Roman pick the first radish of the season! Roman loves and adores them, almost as much as we do! Needless to say, God had his hands in this HUGE transition and thanks to Holly, Jeremy, and the new daycare center....my heart is finally on the mend again.

Roman is using more words these days. They are very routine and echolalia like (look it up) which is very common in autistic kids, but I don't care a bit. He can tell me he wants a drink ("milk" or "juice") and he can get a chair to reach in the cabinet and get what he wants down. He can tell me up if he wants held, and just yesterday for the first time ever....he told his dad "pick me up!" Yes, my three and a half year old just managed to say "pick me up" one time and has not repeated it since, but guess what? I don't care! The simple improvements in some eyes, are major milestones in mine and I am forever thankful for all that have contributed in this! Roman is more laid back, sleeping better at night for the most part with very few night terrors, and he (on a normal 8-5 day) loves his new school. I couldn't ask for much more right now.