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.


Monday, February 4, 2013

Prayer

I don't have it in me to write it all out here right now, but please pray for us. I am battling insurance companies, leon county schools, therapists... I am really having a hard time and I am struggling with feeling like my lack of knowledge is failing my child. Maybe I will blog about it tonight, or tomorrow, but right now.....please pray for us. Thanks.

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.**