Monday, March 27, 2017

A Thought on Autism

April is Autism Awareness Month, with April 2nd is World Autism Awareness day, which are coming up. When I think of valiant, I think of those struggling with this disorder and their families. Every day we try, fall short, just to try again. Sometimes we have a milestone, a victory if you will. It could be something small like letting us brush their hair without a fight, all the way to a new word, (spoken in context no less), to potty training or a week without meltdowns. 

The valiant are the other children who stand up for those with autism who maybe unable to defend or explain for themselves. These could be classmates, church friends, neighbors, or siblings. Heidi Anne had an experience where a child (knowing that her brother has autism) told her "Your brother's a retard!!" She  replied "No he's not!" then told the teacher. Heidi Anne explained to me, she didn't know what the word retard means, she just knows it isn't a nice word. Now this is a little girl who gets bullied or pushed around by others constantly. But don't insult her baby brother! I couldn't be prouder of her. 

To me a coward shrinks away from the fight. The cowards are the ones that make rude remarks regarding our special children. They are the ones who glare, whisper, or talk behind our backs. A coward chooses to stay in the dark regarding autism and it's fellow disorders. 

The valiant keep going out into public despite the difficulties this can involve, exposing their children to the world. Because the world won't adapt to them. They must learn to navigate this mad environment while we, as parents, can still guide them. You, as a special needs parent, are among the valiant in my book. 

Saturday, March 25, 2017

Let the Insurance Fun Begin

Next week will be BUSY!! 
The 28th we have Rory's Speech Therapy (a real speech therapist) assessment.
The 29th we have Early Intervention 
The 30th we have his first ABA appointment-Maybe

I need a real life besides appointments and errands. Any suggestions? Anyone? Sigh.  

With all these up coming appointments I thought it best to call our insurance provider on Monday to find out what limits and costs we're looking at. For speech therapy he's only allowed 20 sessions per YEAR. It doesn't matter if the session is 30 minutes or an hour, he's only allowed 20. That's roughly 1 session every 2.5 weeks. 

I verified that he's allowed 600 hours of ABA therapy a year. That's only 11.5 hours per week, way below the recommended 15-20 hours per week. I'm hoping they can teach me some skills so I can make up for the lack of actual 1-on-1 session time. 

Want to know the fun part? Our plan only allows for individual deductibles and individual out of pocket max, not a family one. So each person has to hit their own deductible and out of pocket max, which is more costly than the family deductible version. Yeah. 
On Friday his Speech Therapist's office called back with bad news. Speech therapy wasn't covered under our insurance plan unless the need for therapy was due to an injury or illness. That led to me spending over 45 minutes, 1 customer service rep and 2 supervisors researching if autism is considered an "illness" with the insurance provider. According to their findings, as long as the therapist code it under Autism, it should be covered. Should is the key word. I called back his speech therapist and gave them the new information. 

The insurance rep uncovered additional bad news (because they're an insurance company after all). The place where we are planning on getting Rowan's ABA therapy is out of network. Yeah, we're still working on that one. The question now is do we go with our original therapist or do we try to find 1 of the 6 in-network providers? 

Update: I did find the 1 provider with a location around our preferred area. They have a wait list of 6-8 weeks. I went ahead and placed Rowan on it, just to be on the safe side. I'm betting we'll have to go with this new provider, like it or not.
For Early Intervention this week we mostly reviewed Anastasia's new goals for the next 6 months. She meet or surpassed all of her goals but 1 - the tongue thrust issue she has when she eats. Anastasia's new goals are: 

  • Cruising (Walking along furniture for support)
  • Walk at least 5 feet unassisted 
  • Sitting up with no hands to balance herself
  • Eat table food
  • Drink from a real cup -- They brought a special cup to help aid her and Rowan to drink from.
On Friday Heidi Anne had parent teacher conference. She's doing okay in school. She either gets A's or C's, there is no in between with her. I'm trying to get her on a 504 Plan since a recent re-evaluation on her ADHD revealed that she's gotten worse and she now has anxiety issues as well. The hope is; to help alleviate some of the stress of testing, doing verbal tests versus written ones, gentle reminders to turn in her homework. Once we move she'll start therapy to aid Heidi Anne to control her anxiety and rein in her ADHD. 

We had plans to go to Bear River Parkway Trail and park, but then it snowed and rained. Every time we make plans as a family to go to the park, it rains or snows. So the next time there's bad weather, just know, we more then likely had made outdoor plans for that exact moment.  

This weekend I took Heidi Anne to go see my first movie in the theater in nearly 6 years! It was Beauty and the Beast. Yes, I am one of those people who've been anxiously awaiting the arrival of this life action version of a Disney classic. The cartoon version was my first movie theater experience. Needless to say, I love this movie. 

I did learn something, I haven't passed the love of this movie onto Heidi Anne. How do I know? Because just before a musical number started I would accidentally start humming the tune. Towards the middle of the movie Heidi Anne looked at me and asked in awe "Mom, how do you know all these songs?!?" I told her "Ssshhhh, because I'm psychic." To which she gave me a smile and a well deserved eye roll. 

Tuesday, March 21, 2017

Moms & Muffins, Anastasia's New Trick, and Silly Rory

 On Wednesday Heidi Anne's school had a "Mom's and Muffins" event. The kids could bring their Moms, Aunts, Grandmas, ect. A few kids came with their dads, which I thought was sweet. Faculty took photos of everyone, I didn't even think to snap a photo myself. It was so crowded! More crowded than Dad's and Doughnuts. I couldn't find a place for us to sit. Luckily, we found some friends who made room for us to sit by them. It was nice to catch up with them in person instead of just Facebook. 

Anastasia has learned a new trick! She's able to sit up with assistance. Char brought up Rory's old walker toy. Anastasia fell in love with it. She started sitting up to play with it by herself (as long as the walker is supported). Rory and Anastasia had their first feud regarding the toy. Both of them wanted to play with it and neither wanted to share. Eventually, Rory tired of it, leaving Anastasia to have it for herself. 
She showed off her sitting abilities and her traditional crawling skills to her physical therapist. Who said the way she's crawling is perfect! She's also starting to go into a sitting position from a crawling position. Yeah for tiny Anastasia, she's almost on par with her 9-10 month old peers. She was also weighed today and is 17 pounds 3 ounces. 
Rory was in a silly mood this afternoon. He was riding everywhere in his car. It reminded me of how someone is learning to play Mario Kart. He'd go forward at full speed, run into an object, then slowly back up. Just to repeat the process over again. He thought it was hilarious.
Then he switched to playing with the ball. He'd grab the ball, throw it, then chase after it himself. The dog began to go after the ball, thinking someone was playing fetch with her. Slowly, Rory's game turned from chasing the ball to playing tag around the house with the dog. Who kindly went along with it. 
After the dog was worn out, Rory played with the balloons. He'd pull them down to his eye level, then release them. I could get him to say "Bye Bye" to the balloons as they floated back up to the ceiling. Rory was just in an amusing mood and I loved every second of it!

Rory and Anastasia were each given a new sippy cup by the nurse who comes to weigh Anastasia each week. (Bet you can tell which one belongs to whom). It's become their water only cups. Which has led to Rory working on a new word "Water", only it comes out as "wa'er". Unless you spend a lot of time with him you wouldn't know what he's trying to say. But Rowan is trying, that's the important part! 

Friday, March 17, 2017

Rory's 2 Year Check Up

Rory had his 2 year check up on Tuesday. Doing those developmental checklists just seems to rub in my face "Your son has Non-Verbal Autism"! We even asked if we had to fill out the forms, since the doctor already knows that Rory has autism. But the answer was a monotone "Yes." I'm sure the staff is asked constantly if papers really need to be filled out. Sometimes when you already know your child is behind, sigh, you just want to skip that part of the appointment. But we didn't, Char filled out the forms, shaking his head every now and then.
The doctor came in, checked to see how our waiting list for therapies are going. Our honest response was "Slowly"! The doctor suggested she put in some referrals for Rory's lack of speech with an actual speech therapist and occupational therapy for his fine motor skills. She said insurances tend to cover "medical" issues even through they are really mental / Autistic problems. All of this will be in addition to his weekly Early Intervention sessions and his 15-20 hours of weekly ABA therapy. Which will be close to 18-23 hours of therapies every single week!

We started getting him undress to weigh him and see how tall he is. He began to freak out. I told him, "Buddy, this is the easy part!". He weighs 25 pounds (30% percentile) and is 36.5 inches tall (71% percentile). After we had a chat with the doctor and she looked him over, the poor guy got his immunizations. He was strong, we had to hold him down, he still wiggled free just as the nurse injected Rory. So the shot went in at a bit of an angle.  

We had time to kill until my next appointment, so we wandered around an uncrowded store for a bit. Just trying to get Rory used to unfamiliar environments when things are slow to reduce meltdowns. As we were leaving the store Anastasia and Rory became very agitated. One thing I've learned is Grumpy Wegeners'+ Food = Solution to everything. 
We tried experiment number 2. Going inside of a restaurant instead of going through the drive thru. It was Rory's first time at a restaurant in a very long time. (Last time didn't end very well. Can you say "Meltdown"?) He surprised us by being fairly well behaved. Of course we sat way back in a corner far away from everyone and the chaos of the line as much as humanly possible, so that may have helped. Anastasia was very happy after getting 2 bottles while the rest of us ate. 

Next was my doctor's appointment. I thought it was at 1:00, turned out it was at 1:30. We ended up in the waiting room for 45 minutes. The babies got stir crazy! Rory kept saying "Milk" but I believe it meant "Bored" since we gave him milk and he wanted nothing to do with it. I walked him around the waiting room in his stroller. 

Anastasia learned a new trick. She learned to wiggle free of the car seat and crawl on the floor. Anastasia then crawled underneath a table, making it hard for me to grab her. Tricky girl. We decided to divide and conquer. Char took Rory for a little drive while I took Anastasia into the appointment with me. It worked out pretty good. On the way home they finally fell asleep. 

Can I take a moment to say, Daylight Savings changes SUCK!! Especially when your children are little and have a set routine. 

Tuesday, March 14, 2017

Rory's Party and Weekend at Grandma's

Everyone (but Char since he had work) spent the weekend at Grandma's and celebrated Rory's birthday. We got down there on Friday afternoon and the weather was perfect for playing outside with the cousins. Rory discovered a lot of sticks and the sandbox in Grandma's backyard. He had tons of fun exploring the outdoors! Rory discovered the trampoline's magical powers thanks to Cousin H's help. She would gently bounce whenever he came on the tramp.
Grandma brought out Rowan's birthday gift a little early, a ride on car, for him to play with. At first he couldn't propel himself, therefore, someone would have to push Rory. He'd smile so big when anyone would move him around. (The pictures are a little blurred because I was holding Anastasia while taking them outside) 
After we played outside we came in to play some more. The girls played lots of games. One of them was dress up using things from Grandma's around the world travels. Here's Heidi Anne in head-dress from the Middle East. The girls (minus baby Anastasia) played for hours on end. Anastasia crawled around the place. 
Heidi Anne would pause her games to come push Rory around and try to teach him to move the car by himself. She's such a good big sister. Something eventually clicked and he began to move backwards, but slowly learned to go in whichever direction he choose. Later that night we had pizza for dinner and the cousins had to go home. 
Saturday morning was busy! Heidi Anne helped make French toast for breakfast. Where Rory accidentally threw a plate, (which shattered). Later Heidi Anne went to the store with Grandma to get supplies for Rory's party and to pick up a party guest, Cousin G. Since I have a nasty latex allergy, Rory's never really seen balloons before. He got super excited when he found the Mylar balloons in the living room. He excitedly bopped them, held them down then giggled as he watched them float "magically" back towards the ceiling. 

Family began trickling in for the party around Noon. Just in time for the barbecue lunch. There were corn dogs baked in the oven, hot dogs and hamburgers / veggie burgers. It was such nice weather (in the 60's) we were able to eat outside. Since it gets rather cold at night, we weren't bothered by any flies or bees. 
After lunch we came inside to open presents. Rory hasn't gotten the hang of unwrapping gifts. Heidi Anne or myself would assist him. He got a farm puzzle, a dinosaur puzzle, and one that makes sounds of different vehicles like; fire engines, trains, motorcycles, ect. 
He also got a stuffed frog and a book, to share with Anastasia since their birthdays and ages are close together. Oh and a magic color pad, all you need is water in a special marker and the black and white page is filled with colors and pictures. (Sorry there aren't more pictures, I was juggling Anastasia and the camera). 
After presents came cake! Well, cupcakes to be more precise. Which has been our tradition since Heidi Anne's first birthday. Rory just licked the frosting off his cupcake, then grabbed another one before anybody could stop him and licked the frosting off of that, too. He tried for a third but was intercepted. That little boy got chocolate frosting everywhere on his hands and face! 
After cake almost everyone had to get going. Heidi Anne went to go spend the night with Cousin A. Rory spent the rest of the afternoon and early evening playing with Cousin G. Just as the kiddos were finishing up their dinners, Cousin G's parents came to get him. They brought my new niece (from now on Baby Cousin E) with them. She was adorable! I didn't get a chance to hold her because Anastasia wouldn't let me. In fact, Anastasia was super clingy to me this weekend. Maybe next time I see them I'll get to hold Baby Cousin E for a bit (if Anastasia let's me). 

Funny Story: We drove home Sunday after we picked up Heidi Anne from her sleepover with cousin A. The long drive was a more difficult then usual, because I had the balloons blocking my review mirror and the sound puzzle would randomly play sirens! Therefore, I never knew for sure if it was a real emergency vehicle trying to get my attention or just the puzzle. I kept envisioning my self getting an evasion from police charge. Not to mention just how ridiculous it would sound to say "But officer, I thought you were my son's puzzle acting up again, I promise!" 

Sunday, March 12, 2017

Little Milestones

 Anastasia has started to crawl in the traditional way (crawling on hands and knees). Until now she's been getting around via army crawl. She's super fast and loves to get into everything! Sure, Anastasia refuses to eat table foods (she's still on baby food) but she has no problem putting random things in her mouth. Go figure. 
Rory has started a new game. Which is huge! He gets a wipe and pretends to sneeze. Then we say "Bless you." He laughs and repeats the process. I drop everything to say "Bless you" when he plays the game. Because it's him trying to interact with us. Even for a brief moment, it means the world to me.
Sometimes, he'll randomly pretend sneeze and looks at me with expectant eyes. As soon as he does this I respond "Bless you". Then he returns to what he was doing. Almost like he's making sure I'm still there for him. Maybe it's checking to see that I'm paying attention to the smallest detail. Which I try my hardest to do. 

He's started trying to say the words Thank-you, but it comes out more like "Deek-Do". I think it's just his echolalia (repetition of words, randomly spoken), right now. Why? Because he says Deek-Do at chance intervals, no rhyme or reason to it.  
We just got the movie "Moana". Heidi Anne loves it. Rory pauses what he's doing whenever a song is on or if there is Polynesian sounding music playing in the background. He's language therapist believes it's due to the rhythmic patterns of the music. Who knows for sure? All I do know is he gets mesmerized by Moana and we've watched it at least 4 times in less than a 48 hour period. No other movie has entertained both Heidi Anne and Rowan simultaneously. 

Saturday, March 4, 2017

Rory's 2ND Birthday

Rowan can't really open presents, or if he does he fixates on the new toy and the other gifts are left forgotten until he tires of the toy. Knowing this we did an experiment. We put all his unwrapped birthday gifts in a big box. We let him open the box and see all the new toys. He excitedly pulled them out of the box and handed them to us to get out of the packaging. Wait for it to be opened, then still got fixated on the toy. So we had to bring out another present for him ourselves. Might not have been traditional, but it worked out perfectly for him. 

We got him some matchbox cars.
His own toy plane (he loves the one his language therapist brings for him to play with). 
helicopter because he loves to make the propellers spin. 
The plane and helicopter turned out bigger than expected. But that's what you get with online shopping. Better then smaller than expected. 
Here are the girls watching him open presents. 
Anastasia looking with glee at all the new toys that she'll inevitably get to play with. 

We made a chocolate cake for him. Unlike last year, he LOVED the cake. He got so messy. Next week we're going to have a little extended family party with his cousins. It'll be his biggest birthday party yet. 
I don't know what causes autism, (there are theories a plenty), to be honest we may never know. To me, it's like closing the barn door once the horse is out. My only son already has autism. So we adapt. In 2 weeks he starts ABA therapy. We'll travel 2 hours a day, every week day,until we move (in like 3 months), for a 3-4 hour session. Per DAY.
Which I'm honestly excited for. That was my gift for his birthday.