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, 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 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's 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!