Saturday, December 29, 2012

Can I buy a day eraser for $2000, please?

Where do I even begin?

Today was the day from Hell...

Today brought huge encouragement....

Today made me question if I am really cut out for this "autism mommy" business....

Today I wanted to....no, I did cry.....

Any of the above would be a good start, but I guess we will start with Christmas festivities and end with the worst day since I received this news of my son having autism.

Christmas Eve we went to visit with Ramsey's side of the family. because his grandmother had gifts she wanted to give the kids. Roman did great. He ate at the table and for the most part was very attached to my side. As soon as he started getting up and moving around, I decided it was time to go. You know how it goes when you go to the great-grandmother's house...all the glass...breakables...yea, he had no business in that house! We left and came home. Once home, he opened his gifts from her: a Tonka truck and a ball. He was happy, perfectly content, until Rayna opened her gift and it was a Little Mermaid little people carriage. He flipped out. He wasn't going to let anyone but himself have and play with the little people arielle and prince. It was so bad that I took him to bed. I laid him down only for him to flip, flop, scream, hit, scream, kick, scream, head bang, hit, etc. Rayna actually got so tired of hearing him scream that she gave him the little people and he went straight to sleep....arielle in one hand, prince in the other.

Christmas morning rolled around, and sadly he wasn't as into opening gifts as I had expected. I had to help him with opening them. He was in car Heaven when it was all said and done. 100+ cars, little people racetrack (Good call, Shenika!), little people fire engine (Go, Mom!), balls, puzzles, etc. He was happy.....and my living room officially looks like a toy car lot! Lots and lots to entertain him for a while....one would think, but obviously the things we THINK would be amazingly perfect are NEVER what the autistic child finds amusing. I will get it right, one day.... I take that back. He loves it all and it DOES make him happy....just Heaven forbid I try to put all 100+ cars in their tupperware bin, or put all the puzzle pieces into their bin. For now, my living room is a chaotic toyland organized by Roman himself...and don't you DARE try to change it!

Move onto Wednesday, the day after Christmas. Roman went to daycare. Don't judge me... I needed the day Roman-free to get some stuff done. (Help my church pack up for the big move, clean up a bit, etc.) When I picked him up from daycare, Tomeka said that he wasn't really himself and kind of warm throughout the day, but never really feverish. I took him home, fed him dinner, and he went missing. I found him in my bed, completely under a blanket, almost asleep. I felt his head and he was burning up. Spiked a fever out of nowhere. Coughing, fever, TONS OF SNOT, and just miserable looking. I gave him Tylenol and let him go to sleep. A few hours later I crawled into bed to snuggle up next to him and he was so hot that I literally had to sleep with feed of space between us.

 We woke up Thursday morning and I decided to take him to the pediatrician. Side note: one of the really crappy things about having a child that doesn't communicate well with you is that when something is wrong you really don't know. He doesn't say ouch and point to his ears, or tell me anything hurts at all. I honestly thought the doctor would say he just had a virus or maybe, at worst, an ear infection. Lo and behold my child tested positive for strep AND flu. Just my luck.... so off to the pharmacy for Amoxicillin and Tamiflu, plus Tamiflu for the other three kids in my house as well. That was a fiasco in itself, but regardless it is taken care of and resolved. (Thanks, Mom!) By the time I got home and situated, my good friend Holly was in my driveway with lots of chicken noodle soup, Gatorade, and crackers. Thank God for loving friends that take care of us when we just don't have the energy to make that run to the grocery store!

Friday was full blown recovery day, although Roman didn't act like anything had even happened. He was back to his normal self, destroying everything in site, haha. He was bossy in his own way and demanded things be left out and untouched. The fever broke, and you would have never known he was even sick.

And then Saturday happened....

I woke up this morning to Roman crawling in my bed. As usual, it was still dark outside, so I tried to put him beside me and go back to sleep. Clearly he was not okay with this, as he began kicking my face and then the back of my head, back to my face. I put him on the floor and told him that was not okay to do to mommy. Then the screaming ensued. Sleep was not going to happen. I stumbled my way out of bed to head to the restroom. THAT was the worst thing I could have possibly done. He threw himself on the ground and had a full blown tantrum. Why? Oh, I have no idea... I went to the kitchen and got him a drink, which was poured right on the floor while staring me in my face. I got him some cereal, which I think might possibly still be sitting on the coffee table. The entire morning was slammed full of screaming, tantrums, hitting, kicking, pointing, screaming, etc. I honestly wanted to crawl in a hole and hibernate for a few months. Randomly, COMPLETELY OUT OF THE BLUE, i got a text from a friend that lives in Iowa but happened to be in town. (Jeanna) When I say God really knows when we can't take anymore and shows up in the strangest and most amazing ways, trust me....it's true...it happened today! I went and met with Jeanna, who happens to be an ESE teacher. She works with autistic children all day every day. While talking to her, she was telling me that her mom and sister have connections to CARD (which you may remember I have been having a REALLY hard time getting into) and also are able to help me get into the FSU Autism Institute. The final two places I am supposed to get Roman into via the geneticist's orders....PRAISE GOD! All that to say, January 7th I am meeting up with Kat (Jeanna's sister and also friend of mine) and she is going to go to CARD with me and talk to the right person to get this mission accomplished. I won't go into detail about the tantrum that Jeanna witnessed, or the screaming that ensued for the 20 minute drive home, or the hitting, drink pouring, kicking, door slamming behavior that has finished this day out, but let's just say.... today officially marks THE WORST DAY SINCE BEING TOLD MY CHILD WAS AUTISTIC....I hope and pray that tomorrow really is a new day and today was not the first day of a new stage in this craziness. If it is a new stage, friends, get ready....I might be a Becca very few of you know...and I might just be asking for help, because seriously...I don't know how many days like today I can live through. I realize reading it might make you smile, or giggle, or think awww Roman is so cute...but no joke... I feel defeated as I write this. I literally feel like I wasn't really cut out for this "autistic mommy" business that life has handed me. I know I am stronger than this and I know that tomorrow I may even want to hurry on here and delete that line, but it's true... today made me question myself as Roman's mother.

Now, I think it's only fair I end with more positivity.... I talked with Martha at my church on Wednesday. We have been facebook friends since she went to Haiti and I followed her pictures and whatnot, but I had never actually met her face to face. Wednesday I got the chance to meet her and talk to her. She has a barn full of horses that are used for animal therapy...and hopefully...if all goes as planned.... Roman will be able to start with her program. Animal therapy. He loves animals. Surely it will help? Or will he show his mean side and kick a horse? Who knows... but I can only hope and pray that it is at least one more peaceful hour of the week.

Jeanna, Kat, Holly, and Martha.... Thank you from the bottom of my heart. I am beyond thankful for all that you guys have offered to do to help in this adventure that I never once asked for, never once dreamed would be my life, but am honored to know that God has entrusted this little boy to me. Thank you for being the crack of light into my dark, dark tunnel this week. Without the cracks, and brief glimpses of positivity, I would have given up by now. I am truly thankful for each of you.





Monday, December 17, 2012

Happy Blog in 3-2-1.....

Since things began falling into place with all of Roman's autism appointments, I think I was too afraid to post a lot, because I had a fear that I would have to come crawling back to this site to report a setback. As much as I was preparing myself for any and everything that might come my way, sharing the news here was a fear of mine, so I have really been hiding so to speak.  However....TODAY I HAVE GREAT NEWS!

Let's go back. I am not really sure where I left off, so let's just sum up some HUGE things. We got another official diagnosis from the geneticist.  Out of NOWHERE...and by nowhere, I mean, I did not apply for any kind of supplemental insurance. I was going to ride out CHP and see where it went. I randomly got a letter in the mail telling me that Roman had been approved for Medicaid. Since I did not apply for this, I was slightly confused, but excited as it opened the door for him to go to Progressive Pediatrics for therapy which I had heard repeatedly was the best place in town but they did not take our CHP insurance. I, to this exact second, do not know WHO applied or referred him to Medicaid, but basically due to the disability, he was approved and I couldn't be more thankful.

Progressive Pediatrics has quite a waiting list, but we were bumped right in for speech therapy.  We are still waiting to get with an occupational therapist, but the fact that we got in so quickly with speech is amazing! Also, due to the fact that he receives speech services with them, he is more likely to get an occupational therapist quickly.

Ok, so about a month ago I met with them for an initial evaluation. After the evaluation, the therapist wrote up a plan of care for him. That was sent to the pediatrician for her approval, and then to Medicaid for their approval to proceed. We then met to discuss the plan of care and ensure that we were all on the same page and had the same goals for sweet Babyman.

 After alllllll of that was completed, we met today for his first and real "all in" session. HE DID AMAZING and I LOVE LOVE LOVE his therapist. She was so patient with him, and worked so well with him. She truly is better than anything I could have imagined. She was out of breath by the end of the session, but didn't complain a bit. She simply talked to me, in broken out of breath sentences, and answered any and all questions I had. I say out of breath, because while it WAS speech therapy, she definitely engaged in physical and occupational type therapies as well to incorporate it all. When Roman would get distracted and want to go down the slides, as long as he said please or slide, she let him. She had a way of getting him to attempt words I have never heard him attempt before. Sure, he hit his stubborn spots and would just giggle, or shut down, but she didn't let that slow her down at all. She just diverted him elsewhere and kept on trying.

I am sure I will miss a few of these, but today I believe I heard my son attempt the words: pig, cow, horse, chicken, dog, please, thank you, more, slide, ball, yes, no, tree, shoes, off, jump. Sure, they weren't necessarily clear, and she even said he said mo for more, bo for no, pee for please, moo for cow, but you know what?! I DONT CARE! I am so very proud of him!

I am so thankful for the fact that this has all fallen so perfectly in place, hasn't taken the long grueling months I was warned about, and that Roman is actually happy with this place. When she called his name, he literally got up and followed her down the hall...not even looking back to see if I was coming. Sure, I went and watched from a distance, but the point is... he is comfortable there!

He also got to swing and play on various therapy swings, slide down the slide, get tossed into the pillow pit, PLAY WITH BOWLING PINS, roll a school bus back and forth, line up some building supplies (because he could have cared less about putting the screws in and connecting anything... he just wanted them lined up appropriately!) Next appointment he gets to "bungee jump" for animals hooked to a chain. I really feel that this is a huge answer to my prayers, and I couldn't be more thrilled with the facility, the therapist, or my support system that I have.

Roman, in my opinion, has already made great strides and I cannot wait to see what else is to come! I owe so much of his progress to my mom and dad for having the patience to work with him on the nights I had school and didn't see him until 8pm, Tomeka for working with him so much at school, Shenika for working with him when she isn't working and on the weekends...and for keeping me level headed and focused on the positives everytime I wanted to fall apart, Debbie for always bringing out a big smile and encouragement for me anytime she sees me or thinks about us...and for praying for us whenever she sees us outside, each and every person who has taken the time to send positive thoughts/encouragement/prayers our way, and Susan for taking the time to do little activities to work with him when I am overwhelmed with day to day life and responsibilities. The older kids also deserve a pat on the back for never once showing out because they feel Roman gets more attention, but simply helping encourage him to talk. I cannot tell you how many times I have seen or heard them asking him to repeat words and giggling with him when he decides to be stubborn. I really have been blessed with some of the best friends and strongest supporters I could have ever asked for.

So there you have it.... a quick update on where we are, whats to come, and a big huge smile from a very proud mama! Pictures from today? Sure, why not!










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.

Sunday, September 30, 2012

Spoiled and wrapped in so much love and support.

Today, at church, my friend Holly showed up with a huge gift bag. In it were new toys for Roman. Animal face balls that rattle, a soft soccer ball that sings and lights up, and.....wait for it....wait for it....SOFT BOWLING PINS!! I personally am a fan of the pins, as they will not hurt when he pegs me in the head with them. We spent the day lining up the toys, rolling the balls back and forth, playing catch, and getting frustrated when things were not according to Roman's standards. I went to Walmart tonight and got him new storage bins specifically for HIS toys.

Also this morning I got to meet a new friend, and another mother to an autistic son that is Roman's age. We talked briefly in between church gatherings and it was so funny to hear her talk about her son throwing laundry. As she spoke, I couldn't help but smile and say "Roman LOVES throwing freshly folded laundry over his shoulder and onto the floor!" It is a rough lifestyle to adapt to, but seeing her smile and knowing that she has gotten this far and her son is speaking, made me see a glimmer of hope that everyone keeps saying will happen, but sometimes I just don't feel it. (Name left out, because I don't have her permission to say anything.)

Saturday during the day, Susan made snow for Roman and her son Jaden to play in. Roman was sketchy about the texture, but he ended up having a good time. I am so thankful for Susan and her eagerness to really reach out and help me with Roman. She knows when I can't take another minute, or when I need a breather and she is always ready to jump and help in ways that sometimes I cannot even put into words just what is needed.

Another person that has been a HUGE help through all of this is Shenika. I love that she has no fear in telling me how well behaved Roman is at school and different things that they do with him. She tells me his favorite songs, so I can download them for him. She reminds me that sometimes I have to be stern with him, and I can't just treat him like a little prince, because he will just walk all over me. She reminds me that it is okay to be frustrated. My favorite is how she will tell me I need to be tough with him and follow it up with "but I am not in your shoes, so I don't want you to feel like I am coming at you any kind of way". She is cautious with her words, and doesn't want to hurt my feelings or offend me, but she is not afraid to give advice that is helpful to me either. I love that!

I got in touch with a friend from my old neighborhood/college/simply put, she just rocks, Jeanna. She teaches autistic kids and had a LOT of good advice for me. She was sympathetic, and encouraging all at the same time. I love her and give her major props for what her career consists of. She offered ideas of helping Roman communicate via pictures, programs to get him into, and even encouraged my OCD by telling me to step it up a notch for his sake. ;) She offered tips for organization that would help Roman, and I am very thankful that she has the knowledge regarding autism that she does. She definitely helped me out tremendously!!

Saturday night, while Roman was feeling a bit stuffy and snotty, he was in full on Roman mode. He was being stubborn, and very difficult. In a very weird way, as if he thought we were second guessing this autism thing, he put on quite the show for us. He was in the corner playing with some toy cars (by himself of course). He lined every last car up into a perfect line. He then went and got some blocks and stacked them like the Eiffel Tower. He began getting frustrated at the building that his brother and Caleb were building and began fighting for those blocks to add to his line he had made. He arm flapped for us, followed by head butting. He bounced around and walked in circles on his toes. He screamed his Roman scream. He became angry and began hitting. He threw a few things. He dumped his cheetos onto the TV stand and ate them from there, as if eating from the bag is the abnormal way to do it. It was so "checklist style" that even Ramsey said, "I guess he is trying to prove to us he can do all the signs". Another moment where it is cute, you can't help but giggle a little, but deep down it's like your heart is being stabbed and shattered.

While I have moments where I am truly feeling like I couldn't hurt any more for this sweet Babyman, I am beyond thankful for those that are CONSTANTLY offering words of encouragement, support, love, and a shoulder to lean on. Thank you all for being my support system. I hope that one day I am able to repay you in some way or another.

**Many others are a part of this support system and help in many ways, but it is 2am and this mama is tired.**

Wednesday, September 26, 2012

Someone stop the roller coaster, PLEASE!

Well, here I sit, trying to fight back the tears and dreading putting my feelings out there, but realizing that in the past it has truly helped. Leave the judgment on FB political posts, please, and don't share them here. Encouragement and prayers are always accepted here, however.

Let's be real... my heart hurts tonight. I am an emotional wreck. I am angry. I am furious. I want to cry. I want to hit things. I want to get in my car and drive to the beach and just lay in the sand and demand answers from God. I want to go on a road trip and drive down the interstate with the radio blasting as loud as it will go as if to drown out some of the thoughts racing through my head. I just want to wake up and live the fairytale life my mom always said I had.... at one point in time. Where did that go, anyway? When did my fairytale, my pumpkin carriage, crash off a wooden bridge into a river that went this deep? WHEN?! WHY?!

Nothing out of the ordinary has happened to bring these feelings on. I just have been doing the typical Becca thing, stuffing so that I can stay on top of things. Facing reality but not facing it the way I thought I was I suppose.

Let's start with Saturday. We went to Jaden's birthday party. It was at Tom Brown Park, so I thought it would be perfect. Outside, weather was gorgeous, surely Roman would enjoy it! He did enjoy the swings....and his bowling pins.... When we got there, he kept to himself, sitting at the table placing his two bowling pins side by side on the table in front of him. Then he would walk off to the water and point and squeal. He was having a blast when Ramsey pushed him in the swings. His behavior was great, but it was so obvious that he is in his own world. I mean, there were kids EVERYWHERE.... and mine just wanted to do his own thing.

On the car ride home, Ramsey said "You know, Rebecca, Roman is just now hitting that stage where everything you say to him he answers with "no", only he doesn't say no, he just shakes his head. Our other kids did that so much earlier than this." I felt like someone punched me in the stomach. First of all, how did HE catch something like this and I had totally missed it? Second of all, wait a minute....who are you and where is the Ramsey that was refusing to believe all of this? Did he finally "get it"?? Turns out, he does get it. He "got it" that day at the party... and I owe it all to one special individual I recently met that was willing to talk so openly about it that day, with Ramsey within ear shots distance. (No name mentioned, as I don't have her permission to do so.) As I said, I kind of stuffed this deep down into my gut and carried on with my day.

Saturday night we went to Susan's to watch the football game. While there, Roman was phenomenal. He behaved and was not full of squeals and screams. However, as Roman does best...he showed us his quirks and we all sat around discussing it. (Giving him a pack of crackers, he dumps them onto the TV stand. He lines them up. He eats one. He finds the Little Einstein's airplane and moves the crackers one by one into the airplane, just to eat them from there.) Sure, it is cute and you can't help but just smile watching him, but as his mother, it's a flood of emotions.

Sometimes I just want to go knock all the lined up toys down and refuse to believe that that is a sign of this stupid thing called autism. I want to start over. I want to breastfeed him longer. I want to snuggle him and rock him more. I want to prevent that salmonella he had at only a few months old. I want to play with him more. I want to buy him every singing toy, light up toy, etc that you can find on Walmart and Target shelves, Toys R Us, and Amazon. I want to erase the memory of MRSA attacking his little body earlier this year. I WANT TO START OVER! I want to refuse the H1N1 shot, the flu shot while pregnant. I want to fight harder and tell the doctor I NEED the Heparin shots even though I hate them and they leave me bruised all over. Here is a brutally honest statement: I want to take back every prayer I prayed begging God to let me have a miscarriage because I didn't think I could handle four kids. I want to take back that night I went out drinking when I assumed I was pregnant, but hey...no test meant I could live in denial a bit longer. I just want to take all the wrongs back and make everything right for my son's sake.

Sunday I went to church like a normal Sunday. When I got home, my next door neighbor came out to meet me in the driveway. She shared with me a story about a young boy she met at church that had gone forward for prayer. She was touched by it and went to speak with the mother afterwards and told her how she just thought it was the sweetest thing. The mother ended up telling her that her son is autistic and the music gives him anxiety, but he doesn't want it to anymore and he was seeking prayer in that area. She gave me a hug, and told me the Lord was in control and she believed he would be someone big one day. This gave me the biggest sense of calmness, and for a few minutes, I truly felt that all would be okay in my world....

Tuesday on the way to school, I was curious and started pulling up youtube videos that were songs on autism. I mean, why not? Maybe someone out there could mirror the feelings I was experiencing. This led to tears, nonstop. The words were gut-wrenching, but at the same time, so real. So real, that I was back to the rut of not wanting this for my son. He doesn't deserve this. I deserve the backlash, I deserve the bad stuff, but not him....what has HE done to deserve any of this?!

I mean, shallow honest moment here, today was picture day at Roman's school and I couldn't even find a new shirt for him to wear because I was worried about if he was going to "look" a certain way. How lame and pathetic can I really get?!

Lyrics to the song:

It's so hard for me to say "I love you"

The words just don't come out the way they should

And I know you don't believe me, when I'm being so bad

That I'm trying so hard to be good

Pre-chorus:

And at those times when you reach for me

And I push you away

Deep inside I just want you to stay, 'cause...

CHORUS:

You're the light in my dark, the current in my stream

My sun when it's raining and drowning all my dreams

Without you, I can't make it ... so don't give up on me

There's a whole lot of love inside the person you can't see.

Verse 2:

I wish I could say how much I need you

I want to show how much I love your smiling face

But something deep inside keeps holding me back

And I'm lost in my own little space


Prechorus to chorus to bridge:

Forgive me if I'm screaming...I'm desperate to show you

Who I really am, I just wanna know you....'cause

Honestly I sat there, in shock...it was as if the words were written FOR ROMAN. He screams, and he, through someone else, was pleading with me not to give up on him. He was telling me he tries to be good despite breaking phone chargers, throwing things at me while I drive, etc. He wants to make me proud. He isn't intentionally making these days and trips to the store overly stressful. That was a huge thing to swallow. This is not his fault. I never thought it was, but my eyes were opened to much more through that song. 

I have been able to find, unexpectedly, a "happy place" for myself. Somewhere for me to go and just feel at peace, smile, and enjoy the environment. I have not turned to alcohol, drugs, or any of the things people typically turn to in an attempt at alleviating their pain so I guess I am doing okay. I just have rough patches. I have weak days. I cry over little things like a new blister popping up on Lilman's knee and the thought of adding a trip to the dermatologist into this busy hectic life of mine. No, the blister wasn't the end of the world. It wasn't the first EB flare we have had and it won't be the last, but it sure did send me into a tearful blubbering mess when it happened. I am just fragile. I am broken. I want to fix everything, and unfortunately there is NOTHING I can do.

What I HAVE DONE, is I decided to pour this negative/depressing energy into setting up a FB event page for Rebekah Runs for Roman. It made me feel like I was raising awareness, helping, in some way. Sure, it may not be huge, but I can't wait for our trip to Orlando so that she can run for the cause...wearing Roman's name... how awesome that I have these people that love me so much in my life. 

I know that I am loved. I know that people all around me are praying for my strength. I know that people wish they could take the hurt away. What I don't know is how long this roller coaster ride of emotions is going to linger around. I have forced myself to eat this week, after losing 10 pounds because food is just not appealing. I have forced myself to wear a smile when people are around and not let my frustration show. I have made sure not to punch any cabinets (haha... SN: My kids decided to tell my parents about that tonight while they were babysitting them...my dad's approach to discussing it with me was priceless.). I literally feel like I am hanging by a thread at moments, and then it all disappears when I find my happy place...and then the thread snaps. It is literally a roller coaster of emotions and I just want to get all of this part behind me. I want to fully accept the challenges that are coming, and stop dwelling on the "what will the future be like" kind of thoughts. Bottom line, I am sick of the roller coaster and I am ready to move to the Lazy River and float my way through the rest of this ordeal. :)
 


Tuesday, September 18, 2012

"Promise you will call me, even in the middle of the night, if you need me?" -Rebekah

Since finding out that Roman needed further help with his communication, I have started to notice more and more things that he does, which happen to fall on the whole "spectrum" of autism characteristics. I have noticed the headbanging, the arm flapping, etc. I have noticed just how often he lines his toys up only to get angry if you rearrange them. It's cute, but frustrating all at the same time. (SN: I am happy to report that I have not had any major breakdowns like the last blog) So, since hearing we had a problem... I have done some research, and I have also gotten more "answers".

I got the written evaluation from the therapist. Roman is currently 2 years and 8 months old, however he is testing out at a 1 year 7 month old in regard to his speech, communication and understanding, and another area that I cannot remember off the top of my head. Regardless, there is a bigger problem than I was willing to accept. I did some research on physicians in the area that are able to give a diagnosis and what the chances are of them being willing to diagnose in a child his age. All I can currently say about this is, I have one person who is going to be evaluating him and is not afraid of diagnosing at his age, and I have an appointment with his pediatrician on Thursday morning. I am hoping to get some feedback, one way or another. Getting a diagnosis that is correct, one way or the other, is what matters right now.

The support that has come spilling out from everywhere is amazing! I've had parents with autistic kids at church offer support and information. I have had teachers and parents of children at the daycare offer hugs and support. Roman was invited to another autistic kid's birthday party. A nurse in my church offered to help however she could, with regard to CARD. Just everywhere I turn, there is so much encouragement and support. I am truly thankful for everyone that has been there, that has listened, that has called to check on us,  that hasn't gotten offended if I let their call go to voicemail because I didn't want to talk at the time, etc. I truly am thankful for each and every one of you that has offered support.

Every time I pick Roman up from E3 Kids, he is playing with this toy bowling set. While in Walmart last week, I found a similar one for $5. I couldn't resist, because he always has so much fun with them on Sundays. I bought them and opened them for him when we got home. Since that day, the bowling pins are his favorite thing ever created. He carries them everywhere, even to daycare with him... He lines them up on the bathroom counter prior to taking his bath. He lines them up in his bed and pulls the covers over him and the bowling pins to go to sleep at night, and if watching TV, he lines them across the front of the TV shelf. He carries at least four with him to the car and back to the house each time we leave. It's cute.....that part anyway.... On the other end of how special and cute these bowling pins appear to be, is the aggressive side of Roman. I wake up at least twice a week being bashed in the face with bowling pins, I watch them get thrown across the room, and I have had to retrieve them from trashcans. I try to figure out what he is thinking, but I just can't seem to crack it....

Last night, he woke up at 1:30. I got out of bed and laid on the couch with him. I was text messaging and playing on my phone, while trying to lay still enough that he would fall back asleep. At 4:00 I was still laying there with him. I looked down to where he was laying as still as could be. He looked up at me, smiled, and went right back to what he was doing.... staring at the ceiling with the most intense look on his face. It was almost as if he was just focusing and digesting a whole bunch of thoughts, but had NO WAY to tell me what he was thinking, so he was just soaking it all in. It was the sweetest look I have ever seen on his face, but it was so sad to me at the same time that I couldn't get him to share the thoughts that were leaving his face so intently focused on the ceiling. It was in that moment, at 4:00am, that I realized no matter what this road holds, I love this babyman so unconditionally that I will take the headbutts that make me see spots, the bowling pin bashes to wake me up in the middle of the night, and the pure screaming fits from point A to point B in the car. He deserves my best, and that is just what I will give him... no matter what that requires from me.

Monday, September 10, 2012

#nohoodiesnecessary

Saturday was a VERY rough morning for me. I saw a side of myself that I didn't know would ever exist, would ever come out so blatently. It was Saturday morning, and the kids were all up. Ramsey had gone to the gym to meet with his trainer, and I decided to pull out the boys' storage bin toy holder. It sits in their closet, basically empty, and I figured I would throw it on Craigslist to get it out of my house. I brought the shelf into the living room and put all the buckets back in to take a picture. Well, my ADD self decided I should go ahead and warm up the stove for the pancakes I was about to make, and let it get nice and hot while I finished the shelf deal. As I was walking from the kitchen back into the living room, I see Roman stomp on the bottom shelf and snap the wood rail into two pieces. I got mad, but managed to just tell him that we don't do things like that. Naturally, he smiled his Roman smile and started jumping up and down doing what I now refer to as the "Penguin Flap" aka arm flapping aka autism behavior that I never really noticed as a sign until I started my research. After cracking a smile, I went about my business. I was in the kitchen and my neighbor, Susan, called. She started telling me that she was crying the night before because she wants so bad to fix this for me, she wants to take the pain away, etc... you know, all the things a friend would say in situations like this that really pull on your heart strings...I hear her voice cracking, and in an attempt to not cry myself, I tell her how frustrated I am... then I start telling her how I don't know the difference between typical 2 year old behavior versus he doesn't understand behavior and it is really stressful. We finish our conversation, and I make my way to the pancakes. (Told you I am always doing a ton of things at once :P) So, as I start the pancakes I hear Rayna crying in the bathroom. I poke my head around the corner to her telling me that she "didn't see the Littlest Pet Shop in the toilet and she accidentally went pee while it was in there". I go to the bathroom, fish out the stupid monkey, flush the toilet, wash my hands, and go back to the stove. No sooner than I flip the pancake, Rayna is hysterical in my bedroom. I walk to her and she informs me that her Minnie Mouse is swimming in MY toilet. At this point, I am fuming (picture cartoon character with flames coming from every angle out of my head). Roman has been spending his "quiet times" throwing toys in the toilet, stomping wood shelves in half, and throwing footballs at my living room ceiling fan to see it spin the football off and into the windows. Awesome. All of this is going down within seconds, so the only way to prevent it would be to tie the kid to my hip....which I am beginning to debate. Not seriously.

I lost it. I admit it. I....LOST....IT.

Out of pure frustration, and feeling like a complete failure at this parenting thing, I punched my kitchen cabinet. I slammed my elbows down on the counter top, smashed my face into my hands, and cried uncontrollably like a little baby. I finally calmed down and started to wipe my eyes, when I felt these little arms reach and wrap around my waist. I heard my oldest daughter, in the quietest little voice say, "I love you, mama!" Naturally, I cried all over again. I repeatedly told her how sorry I was that she saw all of that. I started explaining that I didn't know what it was, but I was going through a lot and I promised her that she would never ever ever see me hit something like that again. I, again, felt like I failed as a mother.

Immediately, as if I felt like I owed the world an apology, but more of an "I need someone to keep me accountable so I will admit what just went down", I picked up my phone and tweeted. I let all of Twitter know that I had failed miserably, and my children witnessed it. Several replies confirming I was not a failure came flooding in, but deep down, no matter who said what, I felt like the World's Worst Mother.

Later that day, after all had calmed down, and I realized how ridiculous I had been....and that my entire church's staff knew about my tantrum...I tweeted again: "Finally ate. Now I feel sick. Kinda embarrassed to show my face at E3 tomorrow after my anger fit this morning." The reply I got made me stop in my tracks and tear up all over again..."If you can't show it here then we have failed. Real place for real people. Come get some love." straight from the phone of one of my pastors. Not surprised, but surprised all at the same time, I replied again "No failing on your end, humility on mine. You know I'll be there..." The reply to this one was a reality check I needed...more than he probably even realizes, and it showed me just how amazing the support I have from my community is: "God gives grace to the humble! Cry on our shoulders and we will praise Him through the storm...Together. #nohoodienecessary"

I am SO THANKFUL to have a church family that loves my family, loves me despite my angry outbursts, doesn't judge, offers to carry my burden WITH me so that I am not walking alone, prays for me, prays WITH me, and best of all..... knows me well enough to know that hoodies are my "safety net" and they have no problem reminding me that I don't need it all the time, because that is what they are there for...

Thanks, E3, for being my safe haven, and a place where I can be loved just the way I am.


"Well if I know you like I think I do, you will know everything there is to know by this time next week" - Megan

I have to say a big "Thank you" to every single person that has offered words of encouragement, prayers for my family, or even hugs throughout all of this. Friends I have not spoken to in years, new faces that are simply mutual friends, and people that are friends of friends are reaching out from all around offering advice, prayers, and words of comfort. Please know that every single one of you has been a part of getting me to today.

It is funny to me, really, how strong everyone sees me. I do know that I can handle a lot, and hold my head high through it, but I tend to forget just how well I manage through chaos and heartache. Sure, I break down and shed a few tears through trials, but I don't see it as a sign of weakness; I see it more as a sign of release. It is similar to a bottle of soda. When the pressure is going to cause the bottle to explode, you twist the top to relieve a small amount of pressure, and it allows the bottle to take a little more. That is how I deal with situations like this. I stay strong and visibly held together, then I relieve a little bit of pressure/tears, and tighten back up and pull myself together.

From my major freak out moments about not knowing a single thing about autism, to mental breakdowns where I am punching cabinets and screaming that I just cannot do it, to doubting myself and my abilities to provide the patience deserved by Roman, to blog after blog about diets that could help and vaccines that could be responsible..... you ALL have made this battle bearable.

The people surrounding me through this are 100% responsible for me even being able to "relieve some pressure without exploding", and for you ALL I am eternally grateful.

Sunday, September 9, 2012

God Doesn't Make Mistakes

I am not really sure where to begin, but I guess it would be best to give a little background. I have four children: Rachael is 9, Ramsey II is 7, Rayna is 5, and Roman is 2. (Just in case they are mentioned in the future; however, this blog is primarily centered around Roman and our journey through his diagnosis of autism.)

Let's go to the beginning, for the sake of those that don't already know.

Roman was born at 38 weeks gestation. He was induced, simply because I had blood pressure problems, and it was getting to be too high. Since I was full term, my doctor thought it was best to go ahead and induce with Pitocin. My body took the induction well, and he was born after one push. My 7 pound 12 ounce baby was here and healthy. I stayed home on maternity leave for the six weeks my job allowed, and on the last day I called my boss and told her I would not be returning. I had started a job working from home, and I already knew I would not be going back, but I had to play the cards right in order to get my maternity leave pay. From day one, I was home with my son.

When he was seven months old, he had salmonella and we were in the hospital for 9 days receiving antibiotics and fighting the nastiness that had taken over. When he was 24 months old, he was diagnosed with MRSA, and again we were in the hospital for 5 days. While there with MRSA, he also had to have surgery done to clean and drain the location. Other than those two not-so-common-for-babies illnesses, he has been healthy.

I remember being home with Roman and thinking I must baby him too much. At 7 months he still was not sitting, standing, etc. He was my hip baby, and I loved every second of it. At 7.5 months, I remember being so excited that he finally sat up on his own. Much to my surprise, literally the NEXT day he was rocking on all fours, followed by crawling a few days later. Two weeks after he first sat up, he was WALKING!! He walked just after turning 8 months old, which made him my second fastest in the walking world.

I decided to go back to school full time, as did Ramsey, and I had to put the kids in daycare (the two that were not in elementary school). I found the most PERFECT place, and he started going all day, every day. I have never had a negative thing to say about the preschool. I love them, and I trust them 100% with my child. They are simply amazing. Soon after Roman started attending, the director came to me and discussed his evaluation with me. She had a little concern over his lack of speech and was wondering if I was willing to have him tested. I have never been one of those "My child is too perfect" kind of parents, so I agreed.

At the testing, I sat there observing. I watched everything that the woman did with my son. When it was over she informed me that the results went like this: white = normal, gray = below average but not necessarily a problem, black = delayed. Roman's speech was in the black and his occupational (I think??) was in the gray. While she wasn't overly concerned about the gray area, the speech was a problem. He only said 3 words at the time, and he was 24 months old. She set us up with a speech therapist and she began seeing Roman once a week, an hour at a time, at his daycare.

A few months into therapy, I stopped her one day and asked her if she was concerned at all with regard to autism. I had noticed Roman would scream A LOT, a very high pitched and random scream. He would do a few other things that were funny to me, but I wasn't sure myself so I asked her. She informed me that he had a few "quirky" things that he did, but that she was not going to rush into labeling him autistic. I was content with her reply, and we continued therapy.

Recently, in the past month or so, I have really noticed the screaming getting more common and out of control. He still, at 32 months, only says about 10-15 words consistently. He doesn't put words together, or interact with other kids. He lines his toys up in a perfect line, and if you mess with one you would think you ruined his entire evening. I found a friend of mine on facebook from high school and began asking her a few questions once I found out that she had an autistic son herself. After telling her why I thought Roman may be autistic, she confirmed that her son used to do the very same things. The screaming was a key common factor. This led to me doing my own research on autism and signs and symptoms that a parent can watch for.

On Monday night (9/3/12) I branched out and looked at the autism checklist for toddlers that I found via google. When I realized Roman had 90% of the checklist checked off, I panicked a little bit. I tried not to over think the whole thing, because clearly I am not a doctor, but when you are a mother... there is just a feeling you get sometimes in the depths of your gut that tells you something is seriously wrong. I had that feeling, and it wasn't going away.

The next day, Tuesday 9/4/12, I went into the daycare to drop Roman off. I had mentioned my concerns to two of his favorite teachers and wanted them to let me know what they thought. One had seen a few autistic-like behaviors and suggested getting him tested just to be sure, and the other was going to observe him. That afternoon, however, when I went to drop his carseat off for my mom to pick him up when she got off work, his therapist was there....wanting to speak to me. She came to the counter and we started talking. She was telling me about progress that she has seen. I noticed she seemed as if she was choosing her words very carefully. I finally interrupted her and said, "Let's talk autism..." She was slightly caught off guard, but said "Yes, I wanted to discuss that with you....................." At that point, my heart hit the ground. She agreed. She knows something is wrong too.... is all I could think. We discussed Roman for a bit longer, and after a 20 minute conversation, we agreed to test further. She informed me that as a speech therapist she cannot make the official diagnosis, but she wanted to make sure that I was prepared, as she is 99% sure that I will be given an autism diagnosis. She does not feel that it is severe and believes it is a high functioning type of autism, but autistic nonetheless.

I knew those words were coming, I just knew it.... but hearing them was like the phone call you dread getting, the words you never want to hear. My heart was broken.

I went home, in a daze. I was on the phone with Ramsey and was going over the agenda of what was going on with the kids, and I said to him, "Ok, well when you get home there is some more stuff I need to talk to you about..." After asking what was going on and telling me he had time to listen, I just started beating around the bush... he seemed as if he was getting annoyed... so I just blurted out "Roman is more than likely autistic!!" I was not sure what to expect from him, so I simply said I needed to go and would call him back later. When he got home, the real "soaking it in" began. He was telling me he felt that it was his fault....for not being there a lot, not reading to him like he did with the others, not working with him and talking to him as much, etc. I tried explaining that that has nothing to do with it and that it is so much more than that. I started wondering if it was the H1N1 shot, the flu shot, vaccinations I had voluntarily signed to have him receive... the typical parent reactions, I guess you could say... we both were looking to blame ourselves, while we were both still somewhat in denial about the entire thing. I admit, I broke down that day. I cried a lot. One of my best friends came over, knowing I was not okay after I tweeted about it, and I broke down crying hysterically in my living room begging her to pray for me.... to pray that I would have patience with him... through this... and that I would just be a good mom for him. I seriously doubted my abilities to raise him. Would I be what he needed? I have all the love to share in the world, but would love be enough?!

The next day I had plans to meet with one of the pastors from my church for coffee. We naturally discussed this topic, which was good for me because I had held quite a bit of my feelings in. I was a crying mess, but I wasn't really TALKING about what was inside. As we were talking he made a statement that I knew, deep down, but I was struggling tremendously with. He looked right at me and said, "God doesn't make mistakes.... He has a plan for Roman, and he has entrusted Roman to you...He CHOSE you to be Roman's mom, and you can do this..."

The rest of the week has been a rollercoaster. I cry.... then I smile.... then I get angry.... then I question God on why it has to be MY kid... etc. I think it is just going to take some time to fully soak in and for me to be 100% okay with this. One thing I DO know is that God knows what he is doing. I will end this with a quick piece of proof that I know God is in control, because I think it is pretty awesome...

I was brushing my teeth Wednesday morning (the day after this all happened) and I got brave. I questioned God. I was brushing away when I thought "Ok, God... you supposedly know what you are doing all the time.... I want you to prove it.... prove that You know what You are doing with my baby...." No sooner than I finished the thought, my eyes fell on a necklace that my friend Bekah had given me last year for my birthday.... a BFF necklace... in the shape of a puzzle piece.... which also represents autism....the necklace that I had not worn since vacation seven weeks earlier and I have no idea how it got to the location where it was laying....off the necklace, just the charm.... right there for me to see.

So, in the end, I know this:
1) God is in control.
2) My child is surrounded by SO MANY people that love him.
3) It will all be okay.

In the meantime, I am fragile. If you see me, hug me...I probably need it. I may break down, I may not. All I know is I want SO BAD to fix this....I would do anything in my power to fix it.... but there is absolutely NOTHING.I.CAN.DO. and that just pisses me off.

This was a long one, but the rest won't be this long....I promise. ;)

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