Wednesday, October 31, 2012

299.0 Autism

Monday we went to the geneticist. She observed Roman and spent about an hour with us. During that hour she confirmed (yes, another confirmation) that he is on the spectrum. She has sent out referrals to the Florida State Autism Institute and to CARD (Center for Autism Related Disabilities). She also sent copies of the transcripts from the visit to Roman's pediatrician who called me today and is setting up referrals for Speach and language therapy as well as occupational therapy. Strange how one appointment, that I truly don't feel was necessary, can open the doors for everything we have been waiting for. Also funny that all I have heard is how long it takes to get this process going and THANK GOD it wasn't an unbelievably long time for us. I probably would have lost my mind, as I was already beginning to, honestly... Dr. Parsley (geneticist) is running some labs on Roman to determine where the autism may have come from, but at this point I really don't care. I will do the labs, as she requested, but I am just thankful we are headed in the right direction with my sweet Babyman. That is all with that, so far.

Roman is starting to say a few words, and even without copying people, more and more. I posted a video to facebook on Monday of him repeating red, yellow, blue over and over on his own. Today he counted to 15 with Shenika. He has been saying "more please" a lot more often, and tonight even brought me a piece of candy and as he held it out to me, he said "please". He told people repeatedly tonight "thank you. bye" as we trick or treated. These are simple words, and I realize to some it isn't a big deal, but for us...THIS IS HUGE! Everytime I hear him say things that I can tell are real words and I can tell what he is saying, I just get this big stupid smile on my face and I swear my heart jumps up and down. Just as happy as I get over that, I get the negative emotions too, but the positives are worth every single tear that has been shed over this trying time.

We went trick or treating tonight. Roman did amazing. After the first few houses, he actually got the hang of it and was walking up, taking his candy...or few pieces because nobody would tell him no haha... and walk away only to run to the next house. He was so cute dresseed up in his bowling pin costume. I cannot tell you how much I smiled tonight. Shenika was with us and helped with Roman quite a bit. It made it much easier and less stressful for me. We went with my friend Dawn and her family. Roman truly had a great time. When we got home, he literally pulled his shoes off and crawled in my bed (still in his costume) and got ready for bed. I love love love the good behavior days and the days where he shows me just how good things CAN go. The kid melts my heart....so much.

I have to say this here.... I have the most amazing next door neighbor! Debbie has been a constant uplifting voice through all of this. She has met me in the driveway to check on Roman, the other kids, and myself. She prays for us, sometimes at 3am. She made Roman a CD with his favorite kind of music on it. She is always smiling and offering words of encouragement, even though she has her own things going on. It is truly amazing having her there on the good and bad days, always reminding me that things are going to be okay. Thanks, Debbie, for all you have done and continue to do as time goes on. I am forever thankful that you are my neighbor, friend, and another mama.

More soon, and hopefully from here on out, you will get more positive updates like this :) Thank you for the continued thoughts and prayers...they are appreciated more than any of you know.

Sunday, October 28, 2012

Stemming makes me want to arm flap, head bang, and throw tantrums too....

I have been wanting to write for weeks, but between life in general, a crashed computer, a crashed cell phone, etc this blog has been neglected. This morning seemed like it was time to make it happen. SO MUCH has happened that I am sure I will leave key points out, but it is okay. Something is better than nothing.

Since the last blog, we have been to the audiologist and been told Roman's hearing is fine and that is not contributing to his delay in speech. We have an appointment tomorrow with the geneticist to see what they say and hopefully they will write the diagnosis for CHP approval. We are in the process of getting him into speech and language therapy and also occupational therapy. He also still sees Beth for therapy each week.

Roman has been seeing Beth for three weeks now. She has offered advice on many things, and I am starting to learn my child better through observations that she has made. It sounds funny saying someone we just met can help me better understand my child, but trust me... he isn't the cookie cutter child, nor are his actions. Any of my other kids could kick me, backhand me, scratch me, pinch me and there would be consequences for it. I never would have imagined someone having to explain that that is just his way of releasing unused energy in his fingers, or that he is simply "stemming". I am so grateful for her and her ability to look beyond the things that make me honestly want to roll my eyes and find the nearest corner to curl up in.

Beth has mentioned the weighted vest for Roman's vestibular something (cant remember), she has explained why he likes sleeping on my head or on the edge of the bed at night. She has him saying "help" in his own little way "puh!" and slowly teaching him how to sign the word help. She has offered suggestions on his music appeal.  He seriously is calmed down by music, loud screaming angry music, but music nonetheless. She has repeatedly told me that I have "a special little boy on my hands, and he is going to be just fine". Sometimes, even though those words seem so simple and like something I should already know, they really do get me through the week... until we see her again.

Roman also has been getting frisky at school, ha. His teacher, Tomeka, has gotten to see his very affectionate side in more ways than she would like. Roman has never had the distant, not affectionate, side of the autism world. He likes to love on people and give hugs and kisses...as long as he is in the mood for it. Tomeka has had the joy of having Roman reach up her shirt and rub her arm, her stomach.... he goes up to random parents/grandparents and pats them on the butt or thigh, etc.  While most would say this is extremely inappropriate, I am beyond thankful that he DOES show affection. (and before anyone gets all opinionated here, I do understand that it is inappropriate on his end and I will work on that) I was able to talk with his teacher the other day and she said that he is using more words and copying things she says more often. No, his words are not what anyone would understand YET, but as he repeats things he hears, you are able to understand that he is copying what you just said. Regardless, this makes my heart happy and brings a smile to my face.

The last two weekends, Shenika and I have taken all of the kids to the park. Roman has had fun and seems to really enjoy just running and doing whatever he wants. There is minimal screaming and arm flapping, etc. I really enjoy being there because I feel like he may not be playing with other kids or interacting with other kids, but at least he is having fun and getting some of his energy out. Honestly, deep down, I like not seeing all of the "signs" that are looked for and observed in autistic children. I have said it before and I will say it again: when he starts jumping up and down flapping his arms, or playing with his hands in the air just staring at his fingers move, etc I feel this anger literally flare up inside of me. I literally HATE when he does it. I don't show it, and half the time I will laugh and say something about him being so cute, but deep down I despise it. It's like a big heavy door slapping me in my face reminding me of the struggle within that I pretend doesn't exist.

Speaking of those struggling moments. Friday night the kids and I went to the XFactor connexity event that my church did. I seriously thought I was going to cry throughout the entire thing. Roman was all over the place. When Kelbe sang some Kelly Clarkson, he was right in front of the stage jumping, dancing, running in circles, etc... but as soon as a slower song, or not so much to his liking, came up, he would start getting into trouble. He wanted to get on the stage. He was crawling under the judges seats. He was trying to run into the staff area. We literally had Larry Coffee (who was AMAZING. He had so much patience with Roman and didn't act like he was an inconvenience...which I often feel like we are when I take him places), Dan Meyer, Dan Durrenberger, myself, Holly, and Dawn all trying to contain Roman. He was a handful. I wanted to just run out the door and cry, because I often feel like people look and wonder why I have no control over my child. Roman and I did end up leaving early when I had finally had enough and Holly brought the older kids home when it was over. Again, very thankful for the people in my life that do understand these struggles I face and are willing to help.

I had a chance to talk to my friends Angela and Melissa this week. Angela is in school for her masters in psychology and Melissa is the mother of a special needs child. Both offered amazing advice that I needed to hear, and have given me some much needed guidance. I am officially in this stage (and those that see me every day and know what is going on and are hearing this for the first time, please just read it and move on...I don't want to talk about it) where I don't know what to do next, what comes next, and I don't have the energy to try to figure it out. I have a headache just thinking about it most of the time and I hate that. I want to be out there screaming at people and trying to make people jump through hoops because THIS IS MY CHILD but I really just don't have it in me some days. Lately, I feel like I am inadequate and I will never be enough for Roman. He deserves someone that isn't overwhelmed all the time, doesn't have so much going on, and doesn't want to break down and cry because he is just doing what Roman does. Deep down, though, I know that God put us together as mother and son, and there is a much bigger picture than I can possibly understand. I just hope that as time goes by, I become all that Roman needs in a mommy.

On that note.... after typing those words.... I think I am done. I will update after his appointment tomorrow.