[Autism Update] Mason. One Year Later.

Monday, September 12, 2016

I meant to do this update in April, for autism awareness month, and officially a year after Mason had been diagnosed with autism. We found out on April 9, 2015 and I had planned to share what life is like one year later from that date but the time got away from me. And, I'll be honest, I have been postponing writing this post, not because I don't know what to write, but because I feel like it has to be perfect. I'm not sure why, but I feel like I have to make sure that ALL the details are in this post. And it's been hard. I've been putting so much pressure on myself that I feel like I don't know how to say what I want to say and I don't know if I'm forgetting anything. BUT I've decided now that I'm just going to share what I have and what I know, and if there is anything else to add, there will be a Part 2. I've put too much pressure on myself and put this off for way too long (like 5 months too long!), so without further ado....

Here we are, (a little more than) one year after I first shared Mason's diagnosis with everyone.


So, most importantly, how is Mason doing?

Mason is doing AMAZING! Honestly. Amazing! We've gotten him in to a pretty good routine and he is kicking butt and taking names. I am seriously in awe of him everyday and how he seems to come home knowing something new everyday. He is currently attending preschool at the same place that he has been going since September 2014. He recently changed from the "little kid class" to the "bigger kid class" even though he is not potty trained yet. We are working on that. That is currently one of the biggest struggles. But like I said, he's doing great with that too! He protests a bit when he doesn't want to go but I'm trying to teach him that if we take him to go to the bathroom and he doesn't need to go, he can just say "no thank you" or "all done" and I know that he doesn't need to go. There is no need for tears or a tantrum. And that's going well. And something EXCITING to report, that literally JUST started while we were on vacation... he's started TELLING me that he needs to go potty! This was the biggest struggle in our potty training journey because I just didn't think that he knew or cared if he was wet. But now he will stop in his tracks, kind of grab his crotch area (sorry TMI), and I know that he knows that something is going on. I ask him if he needs to go potty and 99% of the time he'll say no and 99% of the time I will take him anyways and 99% of the time he will go. So I think he's starting to know what's going on. He's also asked maybe a handful of times to use the potty, that he needs to go, and then actually goes, which is a HUGE improvement from before and we are hopeful that this means that we've gotten the ball rolling and we just need to continue prompting a little more and he will start to get it.

He's also started talking SO MUCH MORE. Like everyday he says something and blows my mind. And everyday he calls me "Mommy", it never gets old. I will never, ever get tired of hearing that little voice calling my name or telling me to "come here, Mommy!". Never. He not only surpassed his goal of knowing twenty individual words, but he now puts 2 to 3 to 4 and even 5 or 6 words together at a time which is HUGE. Seth and I went to a class a couple weeks ago on helping your emerging communicator communicate and someone mentioned asking questions. I know that Mason understands and responds to questions that we ask him but I hadn't noticed him asking us any questions. Of course right after we came home from the class, I started to notice it! I don't know if it's new or not but he's been asking "Mommy, what are doing?" more and more as well as a few other short questions. I don't think I could fully express how much he can talk and say and repeat, but let me tell you, it's AMAZING. Despite the fact that he still says no a lot (#fournager), him talking is my very favorite thing! Oh and I can fully tell you that I now fully believe that he really is my son (not that I didn't before but he hated sweets so I had my doubts! Ha!) because he is OBSESSED with ice cream. He says "I need (ice) cream" or "I need ba-nilla!" ALL THE TIME. The apple doesn't fall far from the tree.

Oh! And also. He is SO SMART. Now I know I am his Mom and of course I think he is smart, but I seriously think he is so smart. Like he knows all his numbers from 1-60 on his own and can count to 100 with help and prompting. He knows all his colors and shapes. It's hard to accurately explain, but he just does things and says things and picks up on things that completely surprise us. I definitely think he is behind in some areas compared to "typical" kids his age, but I also definitely think he is ahead in some areas also.

We didn't really have any other major concerns (just minor concerns) besides the talking and the potty training and those have been our main focuses but he's also gotten a lot better with his motor skills in terms of using spoons and forks appropriately and self help skills. He doesn't really run away (what they call eloping) to RUN AWAY but more because he is so excited to see what is in the distance but we are working on staying with Mommy and Daddy and holding hands and staying close, and working on safety (like running in parking lots).

I think I've mentioned some of these things before, but to summarize, the services Mason is currently getting are :
Speech -- two 30 minute sessions per week
ABA Therapy -- five 2 hour sessions and one 5 hour session per week (2 nights per week at our house for 2 hours each, 3 mornings per week at his school for 2 hours each, and one 5 hour session at the ABA school on Saturdays.)





A few changes to report from last year...

No More Group Speech
Mason had been getting two 1 hour sessions of group speech and one 30 minute session of individual speech per week up until a couple months ago. The place that he gets speech at put in for an authorization extension (the insurance only authorizes three months at a time and then the speech center has to ask for an extension/continuation - totally normal and routine) and it was denied. I got a letter in the mail and was thoroughly confused. I called the medical group (which is what it said to do) and they said my insurance could tell me why it was denied. So I called them and they said the medical group would know. Awesome. So I called the authorizations department of the speech center and they FINALLY told me what happened (after calling my medicine group back - of course). Apparently my insurance excludes group speech from their coverage. Umm, huh? Yeah, the same group speech that Mason had been getting for probably six months is (and was always) excluded from coverage. Umm, ok. So I appealed and fought with the insurance company to try to get it re-authorized. Spoiler alert : it didn't work. But, they did at least approve more individual sessions so we moved forward with that AND we were able to get the second session with the same therapist that he had for the first one. He now only has two 30 minute individual sessions per week and we're still hoping that his group teacher has an opening for an individual session eventually!

New ABA Therapist(s)
Mason has been getting ABA therapy since August 2015. For those of you who don't know what ABA therapy is, ABA stands for "applied behavior analysis". Mason has a BI (behavior interventionist or ABA therapist) to do his ABA. Basically, the BI helps Mason act appropriately in situations. For example, at school, if they are doing circle time and listening to the teacher read a story and he gets up to go play, she re-directs him to sit back down and listen to the story. If he's playing on the playground and climbing up the slide, she would re-direct him to slide DOWN the slide. And if he's playing with his play kitchen and putting the food in his mouth instead of play cooking with it, she would re-direct him to play with it and not eat it. That type of thing.

He used to get three 3 hour sessions at school, one 2 hour session at home in the evenings, and one 5 hour session at the ABA center on Saturdays. Yes, that's 5 sessions a week (and if you remember from above, now we have 6), and yes, it's a lot. BUT!!! He's been doing AMAZING since we started it. SO AMAZING. He's made so much progress in the past year that I would do it all over again if I could. Yes, I HATE not having those 5 hours with Mason on Saturdays. HATE IT. But I'd still do it all over again. If I just have to lose 5 hours on a Saturday for a year (probably at least two) for him to thrive and succeed, I'd do it again in a heartbeat.

Mason's ABA therapist (BI) who we LOVED quit back in the middle of May. Of course, I was so excited for her and her new endeavor, but I might have also secretly hoped she hated it and wanted to come back. She was his first BI and was so, SO amazing with him. We sure miss her a lot. After a week or so of no therapy, he got a new BI who is with him for one home session, his Friday school session, and his Saturday school session. After a lot of fighting and asking and bugging, we finally got back up to our regular five sessions and even added one more to make it six, which puts us at where we are today. He has one BI for Monday and Tuesday morning at school, one for Monday nights at our house, and then one for Wednesday nights at home, Friday mornings at school, and Saturdays at the ABA school. They all interact with him differently and we love them all. We've been so, so lucky and are so blessed to have been given such great BI's.

No More Hair Stylist
So I feel kind of silly even complaining about this because it's a hair stylist, but she was seriously amazing. A lot of kids with autism have sensory problems with either the noise of the razor, the cape being on, or any one of various other things. Mason... he does pretty well! He has minor sensory issues with the whole thing, but his stylist knew just what to do. I don't think we even ever told her that he had autism, she just worked so well with him. His main thing was that he didn't like the cape being on. He would cry and push it away. Heck, I don't overly like the cape, but I like it more than I like hair being down the back of my shirt, so I wear it. She was able to calm him down and get it on him. He wasn't scared of the razor noise per se, but he would look at her funny like "what are you doing???" and she would 'tickle tickle tickle" his hand with the razor until he was comfortable. The place we went also had TVs so that helped, but she'd 'tickle tickle' or she'd let him hold a comb or a Hot Wheels car or something so he would feel relaxed. She was recommended to us by someone else and she seriously was amazing. We even followed her to a different location when she changed positions in the company. She will definitely be missed! Since then we've gotten a new hair stylist who is also great and Mason is doing ok with it. She's not at a kids salon, but she does have her own room, so if he is upset then it doesn't bother the other people. We bring the iPad and Mason sits on my lap or Seth's lap and it's been going ok!

So, to recap, we lost one of our amazing speech teachers followed by losing our amazing BI followed by losing our amazing hair stylist. All within the span of a month or so. It was a sort of stressful month to month and a half, but we got it all figured out and things are going well again!





Some Trials and Tribulations...
First let me start of by saying that things are great! We feel very lucky and very fortunate to be in the situation that we are in (and I'll do a post more in depth on that later), but as with any situation, it doesn't come without it's hardships.

In the beginning, everything was SO NEW to us. I had NO clue what autism really even was, let alone what we were supposed to do to help Mason. Thankfully the center that he was diagnosed at had classes and Seth and I learned SO MUCH. We also had a couple great resources in people who had been through this before, one family member in a different state and one mom that I had met through Mason's school. Seriously, they were both LIFESAVERS.

Our insurance, while a complete blessing (ABA therapy is COMPLETELY covered by them (all the praise hands!!!!) which is complete blessing because EACH session that he has can cost around $300 - yep, for 2 hours) is also a pain, as anyone knows. Since about the end of April, I had been fighting with our insurance company. Well, not so much them per se, since it's not really their fault, but since what I needed comes from them, I was calling them like every other day or every week. You see, each of Mason's speech appointments cost me a $20 co-pay. He used to have 3 sessions per week which is $60 per week and $240 per month. I'm not math genius but that adds up quickly. Thankfully our insurance has a rule that if an individual in your family reaches an out of pocket max of $1000, then you no longer have to pay co-pays for them in that calendar year (January-December 2016). So, if you do the math, in 4 months, we had paid $1000. But you see, it's not that easy. Doctors offices are often (if not always) MONTHS behind on billing. Like in April, my insurance had only gotten claims from January and thought I had only paid $240 of our out of pocket max when I had receipts for over $1000. Fun times. So I waited and waited and called the medical group and the insurance and the medical group and the insurance asking for documents to be sent over. And IT TOOK MONTHS. In fact, I met my out of pocket max at the end of April and I JUST got the letter confirming that at the END OF AUGUST. Thankfully his speech center is just as behind so I just told them I had met our out of pocket max (they could see $960 worth of payments to them alone so they knew I was telling the truth) and Mason has been getting speech "for free" since then. But seriously. It is a HASSLE to deal with medical groups and insurance companies. At the end of the whole thing, I knew the girl at Cigna by name and she knew me. That's how many time we'd talked.





And how are Mom and Dad doing?

Mom and Dad are doing well and rolling with the punches. If I'm being honest, I think Mason does better with everything than I do. I feel like I have anxiety over new situations for him, but he continues to amaze me! Before our BI changed, she was out of town one weekend for Coachella and they asked if we wanted to cancel or get a substitute BI. I was nervous about how he would do, but we decided to get a sub and... Mason did SO GOOD! He waved bye to us and walked out with her like he'd known her forever. Way to prove me wrong kiddo (in the best way possible)!

But, overall, we are all doing well! We are all happy and healthy and thriving. Since my original post announcing that Mason had been diagnosed with autism, I have gotten a new job. This job is not only closer to Mason's school, but is MUCH more flexible in terms of my schedule. My schedule was all over the place before - I'd be opening, I'd be closing, I'd be working 8-4:30 and we used to have to juggle who was going to drop Mason off and pick him up. If I was working at 8am, I'd have to rush out of the house by 7am to drop him off by 7:15am and battle traffic all the way down the freeway to hopefully get to work by 8am. Now we leave our house around 7:30am, sometimes stop by the post office (his FAVORITE - follow along with our post office adventures at #postofficeadventuresofmasonb on Instagram (you don't need Instagram to see the pictures - just click the link)) or sometimes go straight to school to drop him off. I then travel less than 10 minutes down the street, sometimes stopping at Starbucks if I want a treat, and getting to my work. My office is small, we only have 4 people on a regular basis, but everyone is so great. We all have our own jobs and we do what we are supposed to and we talk and collaborate when necessary vs me having to pull my weight and the weight of others before. My new work does require me to work 7 weekends a year, but lucky for me, Seth is there too and Nanny (Seth's mom) watches Mason for the weekend and the two of them have a BLAST together. Sometimes I think she wishes we had to work more! Ha. The very best part is that the hours I work are SO flexible. I've been able to take off to go see Mason's Christmas Webby Dance performance, come in late if Mason has a doctor appointment, and just had more overall flexibility with even how many hours a day I work. I've been there for a little over a year now (I started June 1, 2015) and really, this job is perfect for us and our family right now and I am so lucky everything fell in to place with it.

So, when I originally started this update (like 2+ months ago!!!! eek), there was nothing new or crazy to report with Seth. But now!!!! I can report that he got a promotion!!! He is still with the County and working for the Agriculture Commissioner's Office but he now works for the Ag side and not the Weights and Measures side. Don't ask me what that really means because I'm not fully sure that I know (ha!), but I do know that now he finally gets paid the supervisor rate that he should have been getting paid for months while he did supervisor work :) You know how that goes. But anyway, we're so excited for him! He's only been doing it for about a week or so since we got back from vacation (apparently all we had to do was go on vacation for him to get a promotion? lol) but he's learning a lot and really loving it!

So, I think I covered everything, but if you have any specific questions or comments or anything, please feel free to leave a comment below and I will get back to you (make sure your email is linked to your profile so I can email you back!) or shoot me a private email at chasinmasonblog@gmail.com .

Oh! And I don't know if you noticed, but I also added an autism tab on my top bar at the top of the page (it's definitely still a work in progress!). It's full of all the links to all the posts I've done on autism and Mason updates and anything that I thought might be helpful for a new parent whose child was diagnosed with autism. I WISH I had found something like this when I was first starting out. Something to give me hope for the future and for me to know that I wasn't alone. It's been a crazy, amazing ride and I wouldn't change anything at all, but if I can help even just one person, one mom, one dad, then sharing this is all worth it.

Thank you so much for your love and support over the past year and a half! It really means the world to us!




25 comments:

  1. Mason is one amazing little guy! I'm blown away by the things you've shared over the pasty year that has shown how far he's coming. His language, etc is just awesome! It not only shows how determined he is, but that you and Seth have grabbed the bull by the horns and are being proactive with him and his diagnosis. You are one heck of a momma! Lucky Mason!

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  2. You are the best mama and such an inspiration!!!! As a teacher, I have learned that we really are our kid's best advocate and you are one HELL of one! Thanks for sharing your journey!

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  3. This is really inspiring! My husband worked with severely special needs students for five years before switching into a different program (where his students have emotional and developmental disabilities) and it was so frustrating to him the way insurance worked and the struggles parents went through to get their children the help that they needed. You're doing such an incredible job advocating for Mason!

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  4. Wonderful post, it's great to hear how well you all are doing!

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  5. Woot! So glad to read he's doing well and that potty training it progressing! Go, Mason!

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  6. I'm so glad you did this update. I think about Mason all the time and wonder how things are going and what you guys are up to. There's so much that goes on with this diagnosis that I didn't have any clues about. You guys are so incredibly busy! I'm so impressed with how much you all do with and for Mason and I'm in awe of what an amazing mom and advocate you are for him. You guys are all so lucky to have each other. I love this update - Mason seems like the happiest, sweetest kid and I know he gets that from you! He is doing really amazing things! I'm totally impressed with the counting and how well he's doing with his speech. He totally deserves ALL THE ICE CREAM!

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  7. Thank you so much for giving all of us this update! Mason is always on my mind & I'm always wondering how things are going. You are his voice & his advocate. Mason could not be more blessed in the parent department!

    Congrats to Seth!

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  8. He is a great lil guy. Thank you for the update. I'm glad that he's doing well, progressing & lovin' that ice cream! :)

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  9. Hey I just wanted to say that all the behaviors you mentioned that the ABA seems to want to correct are in my experience normal kid things! I remember a parent teacher conference where the teacher told me that 1st or 2nd grade Hallie would "drift away" during circle time--and she meant literally drift away to another part of the room, not lose concentration! And why wouldn't you eat the toy food, right? Sounds pretty age appropriate to me :-).

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  10. mason is kicking butt and taking names. and tell me the truth, how long did it take you to write this?

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  11. So glad to hear he's doing so well! I absolutely love to hear all the new words and phrases he's saying! So exciting to see those wheels turning in their heads and figuring things out! And wow therapy is quite the time commitment! So glad it's working so well for him (and that it's covered)! And I barely have to deal with insurance companies and they still drive me crazy! You deserve a medal for that alone!

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  12. I loved reading this update! I am so glad Mason is doing so well and exceeding expectations all the time. He's seriously the cutest kid and it's so fun hearing him chit chat on your snapchats! Oh, and congrats to Seth!
    Evelina @ Fortunate House

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  13. So glad to hear things are going so well for Mason! I'm sure a huge part of that comes from the way you parent! Seriously, Mason is so lucky to have two down-to-Earth parents who "roll with the punches" as you would say! And I love that you pointed out that he's behind for his age in some things, but waaaay ahead in others! As a parent, I think that's important to remember--diagnosis or not! Keep up the Mason updates--I know they are helping and inspiring many others out there!

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  14. Mason is an awesome little guy! I am so glad to hear that he's doing well. And you and Seth...you two are such great parents! You guys have sought out and found Mason all the tools and resources that he needs to thrive! Mason definitely hit the lotto when it comes to parents. And vice versa! I just adore your sweet family and I am always thinking about sweet Mason!

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  15. wow, Mason is such a great little guy and I'm so happy that he is thriving and doing so well. A shout out to you and all of your advocacy in getting the help that he need. Go Mama! You are doing great job, thanks for the detailed up date.

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  16. It sounds like all of you are doing so great! He looks so happy in all of these photos :) There's a lot I don't know about autism, but I love reading your posts like this. That's crazy about your insurance, but it sounds like it's working out better. Also, yay for ice cream! That's so cute that it asks for it all the time :)

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  17. Loved reading his update and hearing how well he has been doing. It's a bummer that you have to fight with different places to get what he needs though, like insurance. Chris actually just got a new job and started yesterday. So our insurance will be changing at the end of the month. So I get to call up like 3 places to get my stupid butt shots approved again. Butt shot aside, it's great that you are fighting the good fight for him =) I hope somebody that was in your shoes finds your posts!

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  18. It sounds like he's doing amazing! I can't believe how many hours of ABA he has each week! I actually don't think I ever realized what Seth did, and never even wondered, haha. Since I stopped working I've realized I have stopped asking other people what they do. I have friends I have known for years and I suddenly realize I have no idea what they do all day.

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  19. Hallelujah, Liz. I've been WAITING for this post!!!
    It is so amazing to hear how awesome Mason is doing! He is so, so lucky to have the best support system of all time to get him all the things he needs to thrive. You and Seth are awesome.
    Insurance companies and medical groups are THE worst. I can't tell you how many times we've been double charged because no one seems to know what they're doing. I can only imagine what you've had to deal with. You're a freaking saint.
    I'm continually blown away by how well Mason is doing. He's the best kid ever. And, I cannot wait until the next time we get together so I can hear that sweet little voice of his!!
    P.S. Please don't wait 18 months between your next update. ;)

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  20. I am so absolutely amazed by Mason and you! He is one special, smart, sweet little dude. His school sounds awesome and bless him for all those hours he puts in with his ABA and speech lessons. There's a boy in a PreK class at my work who has a BI come with him 3 times a week. Now I actually know what she does, thanks to you!

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  21. Great update! I tried to often read through the lines of your other posts of how he was doing & was often surprised & glad to hear of all the unique and creative things you do with him. He sounded then like he was thriving so it is good to hear that yes he is progressing. It can't be easy going to bat all the time and calling insurance companies or scheduling all those sessions but you are a great mom & you definitely have his best interests in sight.

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  22. There is so much to love about this post. I love that Mason is thriving friend. So many timea through this post I had a huge smile on my face. Thanks for updating us.

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  23. There is so much to love about this post. I love that Mason is thriving friend. So many timea through this post I had a huge smile on my face. Thanks for updating us.

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  24. Your family means so much to me, you know this, so to hear that Mason is doing so well and making strides with this speech and potty training makes my heart swell with pride for you and Seth. You two work so hard to give Mason all the resources available to help him grow and flourish. You two rock!

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  25. You can seriously feel just how much you love Mason by how eloquently you wrote about him. He sounds like he is thriving, and I'm sure that is much due to you & Seth! I loved hearing how Mason is doing, and I live all the snapchat videos of him.

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