Wednesday, January 10, 2018

Standing Out or Outstanding?


My kids are at that prime age where "fitting in" is of utmost importance. When you're growing up, no one wants to be the person that stands out. Do what the group does, say what the group says, wear what the the group wears... that's the safe bet. Kids with autism are no different and I've heard JD tell me many times that he feels like he has no friends even though I know that's not the case. But it's extremely hard for him to blend in with the crowd because of his quirks. His conversations are typically one-sided (based on his topic of interest/obsession), his bluntness can be taken as rude, and his difficulty understanding and using humor makes for some interesting jokes! But what I've tried to tell him time and time again is, "Why fit in when you were born to stand out?" (Thank you Dr. Seuss for these wise words!) Being different is awesome, it's what makes you YOU. Standing out is really outstanding when you think of it. Of course convincing a 10-year-old of this fact is easier said than done. Even as adults we all struggle with this desire to fit in with the crowd but God made each of us different for a reason and that's because diversity is beautiful - even neurodiversity! Everyone brings something important to the table.

When JD was younger and first diagnosed with autism we thought a lot about the things he couldn't do and worked very hard to make him as "typical" as possible. Even to this day I think I have a tendency to do this - of course the intention is to help him become as independent as possible. But some days I have to remind myself embrace his differences and the gifts he's been given and focus on his abilities rather than his disabilities. He's so creative and can build beautiful creations with Legos or in Minecraft that I could never dream of making. He genuinely cares about people and is the first to offer me a hug and kiss when I've had a bad day.  He's funny and makes me laugh and some of the things that come out of his mouth are priceless. I really should keep a journal of them. But if my focus is always to make him "normal" (whatever the heck that is?) then I miss out on those things that make him special.

So as the years go on, my mindset as an autism mom has really changed - love and embrace the child that he is, not who I think he should be. Never stop working for independence, but don't trade in the uniqueness just to be accepted. And of course, continue to love unconditionally as we all want to be loved. :)




Monday, January 8, 2018

Always Searching for Answers

Searching - adj - thoroughly scrutinizing, especially in a disconcerting way. 
If there's one universal truth about autism moms it's that they are in constant search for answers or information. Today I received an email from a mom in the Czech Republic who found my blog and recognized something her son does that is similar to what JD used to do, called visual stimming. I wrote a post about it long ago in 2010. It was one of the first signs of JD's autism, but I had no idea what it was. I just knew that he would play with cars in a very specific way - rolling them past his eyes very closely while he laid on the ground, played at a table, or waved them by his face as he sat in the high chair. I did the exact same thing she did - search the internet for videos or blogs that might be able to provide some explanation. 

That's your life when your child is first diagnosed with autism - searching for answers. I remember spending hours at the computer in the middle of the night watching YouTube videos searching for mannerisms in other autistic children that looked like JD. I was thankful that the videos were there because they would provide some evidence to support what I was telling his doctors, but at the same time tears would roll from my eyes because the evidence is hard to accept. What amazes me though is that this isn't the first time I've received messages from other autism moms searching for help; I actually get a few messages a year from people all over the country. It never even occurred to me when I started writing about JD, I was also providing insight into our experiences and autistic world that other parents could relate to. They are even so sweet as to ask about the progress of JD, since as you can see, I don't post nearly as often as I did when he was little!

The good thing is that it's a miracle to be able to say that things have gotten easier, or maybe autism is just the norm for us now. I was so worried when he was diagnosed about his future and his life - you have no idea what to expect. But what you don't realize at the time is that you don't change the autism, autism changes you. JD's autism has made me a better person. It opened my eyes up to a world outside of my bubble which consisted of mostly the neurotypical and non-disabled. It gave me such empathy for others, it forced me to learn patience I never thought I could have, and stretched my heart to encompass not only wanting to help my son with special needs, but so many others. But that's exactly  what autism parents do - we become an unwavering support system for each other, we become tour guides for the parents whose children are just being diagnosed, and we become stronger as each day passes and each small achievement is made. 

I'm thankful that this parent reached out to me today. It made me stop and think about JD's journey and progress and be thankful for how far he's come. I think a great resolution for 2018 is to get back into my blogging because autism doesn't stop when your child turns 3 or 4. It's a lifetime journey and I'm happy to be the person who documents it!

(Me and JD from Christmas - he's almost 10 years old now and in 4th grade. He's now considered "high-functioning" and is academically on grade level. His challenges now are mostly social and emotional, but we are lucky that he has a wonderful group of friends and a fantastic school to support him!)

Wednesday, January 25, 2017

Limitless!!!


The other day I opened my Facebook app and was greeted with a memory from January of 2012. It was a blog post I wrote called, "JD's Top 10 Accomplishments in 2011." Reading it brought back so many memories, good and bad. But what it really did was remind me just how thankful I am that I started this blog so long ago. It's given me the chance to document his autism journey and allows me to look back and see just how far we've come. I'm not nearly as good about blogging regularly as I was when this just started, but I actually see that as a good thing. When it began in 2010 I used writing to deal with so many issues we were dealing with and now things are easier and that need just isn't that intense. But I still think it's important to do it because I know that in years to come I will look back on this day and be amazed by his progress! And since it's January, 5 years later, I thought it would be the perfect time to list JD's Top 5 Accomplishments for 2016!

Friends and Someone Special

The first few years after JD's diagnosis was filled with therapy to learn motor skills, speech and sensory regulation. We started with Playtime and worked our way through OT, Speech, ABA and more. He still gets weekly therapy for OT and Speech but something I've learned about autism is that at some point the focus changes. Now it's more of a social skills problem. We are so fortunate in that JD caught up on almost all of his developmental milestones through therapy, but sometimes I think the social and emotional difficulties are even harder to deal with. One thing that JD has made huge strides in is friendship. For parents of neurotypical kids this is usually a no-brainer, it's just a skill they are born with. But when your child has autism it's a whole new world. JD's obsessive interests (can anyone say Legos, Mario or Minecraft?!) that can make him stand out in a crowd of fellow 3rd graders. He's blunt, or honest if you'd like to use the PC term. I can't tell you how many times a day he tells me he loves me because I'm "squishy" lol. I never know what's going to come out of his mouth when he talks to someone. It can be really great, or really horrible. But we've learned to laugh most of the time because sometimes we all wish we could be so honest! But JD has made some really good friends in the past two years and he's very attached to them. Some of them are friends from our time in Sarasota, and some are from Orlando. They understand JD and accept him for who he is, challenges and all. Some of his friends are also on the autism spectrum and others are not. Just a few weeks ago he was invited to his friend Asher's birthday! It really makes me happy when I see him texting his friends or talking to them on FaceTime. Thank goodness for technology! But one person is special, his very best friend. Her name is Adeline and her and JD have a connection like no other. She lives back in Sarasota and it's been hard for him to be away from her, but we try to see her every single month. He talks about her almost daily. He tells me he loves her because she "treats him like a normal person." Addie also has some developmental delays, but when they are together they are a perfect pair. She laughs at his jokes and he holds her hand. He talks about how one day they will get married at Legoland and they will live with us forever. I tell him nothing on earth would make me happier. Seeing him connect with Addie, and his friends, is the best gift I could ever ask for!

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Academics

It's hard to believe that JD's in 3rd grade now. Three days a week he's in a special-needs classroom and two days a week he's in a typical classroom with an aide. He makes amazing grades, never anything less than a B on his report card and loves to come home to quiz me on math facts, grammar and science. He wants to be a scientist when he grows up, or a video game designer.... he hasn't narrowed it down yet but I'm sure he'll accomplish whatever he sets his mind on. He wants to work at GameStop when he goes to high school and most of the time is pretty responsible. He's an amazing speller, which is funny because I'm horrible at spelling. I'm proud of him because he keeps pushing onward. School is getting harder and he's dog tired at the end of the day but he keeps on keeping on!

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Shoes, Buttons, Self Care

Another area that JD has made progress in is self-care and independence. He just learned how to tie his shoes! That was a BIG deal for us and I'm thankful for his OT at school who taught him! He can get himself dressed, button shirts and zip up jackets, brush his teeth (although not well enough because he's had 10 cavities) and wash his own hair. He's starting to do chores around the house like folding laundry, and I say folding in a very loose term! He unloads the dishwasher for me and has even learned how to make himself some foods. Again, that's probably something most parents don't think about but it's a big deal to us. Our entire goal as his parents is to make him as independent as possible.

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Sports

I can't believe I almost forgot this one! Last year JD played on his first sports team - soccer, and he participated and dominated in Special Olympics swimming! This was another dream to see come true. We learned that he's an amazing swimmer and we'll start up again in May. He won two first place ribbons in the Central Florida games and we're hoping this summer he'll make it to the State games. He has such drive and passion for swimming and when he's in the water it's like he's in his element. I love watching him swim and I hope he keeps it up for years to come!

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Masterbuilder

Earlier I mentioned one of JD's obsessions - Legos. Our house is covered in Legos and I have a love/hate relationship with them. I currently have probably 8-10 Lego sets sitting on my kitchen counter and kitchen table. JD builds them and plays with them every day. I love them because of a few reasons: 1. because he can build the sets by himself now, which is pretty difficult, and 2. when he plays with them his imagination is in full-force. He has all sorts of battles with his Lego figurines and normally takes at a rubbermaid container of at least 10 of them everywhere we go. The hate part is picking them up on a daily basis. You think I'd give us by now and just leave them all over the table and floor, but I can't. My OCD kicks in and I have to put them away. They say the definition of insanity is doing the same thing over and over again knowing the result will always be the same. That's me with Legos!

 There's a quick recap of just a few of the things JD's accomplished in the last year! I love him so much I could burst even when there are times where I think I can't take another second of listening him talk about whatever topic he's into that week. He makes me so proud in so many ways. These accomplishments didn't happen overnight, more like over years. That's why I liked the quote in the photo above so much - "little by little, one travels far." Keep traveling JD!

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Sunday, November 6, 2016

Ugly Tears of Joy


Wow. I'm not sure even where to begin. I've been crying for a good hour because I just found out that my son can do pre-algebra. We were sitting at the kitchen table doing some makeup work from class that he missed and sure enough he gets to a section of his math homework that says "N+6=14+5." He asked me if I knew how to do the question and I kind of laughed because math is not my thing, so then he went ahead and "taught" me how to solve for N. At first I was so excited but my eyes were quickly filled with tears. I'm not talking like little tears, I'm talking like the UGLY uncontrollable sobbing tears that give you a headache afterwards. He saw me crying and asked me if they were tears of joy and I said YES! I'M SO PROUD OF YOU!! But really he has no idea just how proud I am.

JD is 8 and a half now. He was diagnosed with autism 6.5 years ago. When he was diagnosed he couldn't talk, couldn't walk and really had no connection with the world other than through his Thomas the Tank Engine trains and videos. The feeling I felt on the day of his diagnosis was complete fear and sadness. We didn't know if he'd be able to communicate or connect with us, what his future held or how far he would grow. We just jumped into therapy and hoped for the best but honestly expected the worse.

His autism journey has been really hard. If you didn't know him when he was 2, then it can be really hard see how far he's come. He had severe sensory, behavior and social/emotional issues. We did 30 hours a week of therapy - OT, Speech, ABA. Our world was 100% autism focused. Each year has gotten a little better and even though he still struggles with social issues, he has really overcome the majority of the other problems. Now we deal with his obsessive tendencies, rigidness and difficulties fitting in, but to see him succeed at something makes all of the hard times seem worth it. 

So while I really don't want to share this horrible picture of me and my ugly tears, this is what it looks like to be an autism parent... losing it when your child who struggles every single day succeed at something. Maybe it's not pre-algebra, maybe it's just saying their first word, or sliding down a slide for the first time unassisted (I remember those days), maybe it's playing side-by-side with a friend instead of alone, or being invited to a birthday party. Maybe it's learning to swim or ride a bike. Whatever it is, each accomplishment is so amazing! 

So let the ugly tears flow!... better yet, share the ugly tears with the world so they can feel it too! Because for every accomplishment JD makes, there are millions of other kids on the autism spectrum that are making BIG accomplishments today too and we shouldn't be ashamed to show how happy we are for them!

I love you JD! You have made me a better person and my life is better because I have you in it!



Tuesday, July 21, 2015

You Have Something Called Autism...

"JD, you have something called autism." 
Whew, I said it. I did it. 
Today was the day we told JD that he is on the autism spectrum. 

I should rewind a bit and explain why today. Jason and I have been talking about it a lot lately, about telling JD. He's seven years old and lately when he gets in trouble, he says he has "something wrong with his brain" or "his brain is broken" - I can see the frustration and confusion on his face as he struggles to understand why he does what he does. We struggled with what to say, how to do it, and if he'd even understand. But I knew it was coming. 

This afternoon I took the kids to the bounce house place to burn off some energy and while I was taking Kyle, my youngest, to the bathroom, JD bit a boy (and I mean like a full-on Jaws-sized bite). In full-blown tantrum - crying, screaming, throwing things - I managed to get JD to apologize to the boy and his mother, and get the heck out of dodge. 15 minutes of bouncing and $20 later, I was one ticked mom. On the way home I called Jason and said - this is it. We have to tell him. 

We got home and took JD into his room and told him we needed to have a talk. I just looked at him and said, "JD, you know when you get upset and you can't control your feelings and you get really, really mad? Well, that's because you have something called autism."

Jason and I tried our best to explain to him what autism is but it's not the easiest concept to walk through with a child. We told him that his brain works differently and that's why he has a hard time controlling his emotions or understanding how to play with friends. Amazingly enough he seemed to understand but it was heart wrenching to see him go through three distinct emotions - confusion, sadness and then relief. 

He was confused at first, but then seemed to grasp the concept, then sad when he realized he was different. Then he seemed to have this sense of relief that there was a reason he has a hard time with things. I can't really explain it, but it was just this weight had been taken off his shoulders. I explained to him that he isn't broken, or "evil" as he sometimes says, but that he has autism and we love him just the way he is.

The whole conversation probably lasted ten minutes and when we were done, JD went and told Kyle, "Kyle, I have something called autism and sometimes it makes me really, really mad." It was cute. He got it. 

I'm sure we'll have to keep having the conversation, but at least it's a start. The cat is officially out of the bag and I have to say it's a relief. 


Sunday, April 26, 2015

The Needs of the Many vs. the Need of the Few or One



If you're a Star Trek fan like me, then you may remember the phrase Spock says in The Wrath of Khan. “Logic clearly dictates that the needs of the many outweigh the needs of the few.” Captain Kirk answers then answers, “Or the one.” Who knew this movie quote would swirl in my head so many times as a parent of a child with autism. I've found it to be a struggle to decide if the needs of the many (Jason, Ashley, Kyle and myself) truly outweigh the needs of the few or one (JD). I have to confess that in our family, the needs of the one, outweigh the needs of the many. Case in point, staying in Sarasota, where JD is thriving in this school, versus moving back to Orlando where the rest of us feel at home.

When we moved to Sarasota, JD made it into one of the best autism programs in the country. It's called Pinnacle Academy and so far it's really lived up to its reputation. JD has flourished at school - learning to read, write, do math, history, science... with project based learning or PLB. He has occupational and speech therapy there, he's made great friends there and his maturity level is really at an all-time high (even though he still has a ways to go!). I couldn't be happier with Pinnacle. We've made great friends there and it's really a great community. But I'll be honest - even with as great as his school is, I miss Orlando.

I miss my friends and family. Even just 2 hours aways, I don't see them enough and by the time the day is over at 9:00 p.m., I'm so exhausted that I can't always make that call that I should. I miss my old job, I was great at my old job, and in a building of 700 people I always felt like I knew everyone. I miss my best friends there and the happy hours and the lunch dates. It's not the same here at my new job. Luckily, I'm starting a new position in a few weeks and I hope that I can have an easier time adjusting.

But most of all I miss our church and The First Academy, where Ashley went to school and Kyle would have gone. We had such a sense of family there and it's not easily replaceable. We enrolled Ashley into an A-rated public school this year and she's done really well academically. I just don't really have any connection to the families that go there because it's so large. I thought being the room mom would help, but it's just not the same as TFA where "everybody knows your name" lol. We're looking into a smaller private school for fall because Kyle goes to kindergarten, but I struggle with moving them again. There are moments when I think it would just be easier to go back to Orlando and put everyone back where they were, but that option as great as it seems, comes with a $35,000 ANNUAL price tag in tuition that we have a very hard time affording.

So back to my question - what's more important, the needs of the many or the needs of the few or the one? Right now I'm focusing on the one, because everyone else can adjust easier (I didn't say easily, but easier)... and even though my other two kids may have a hard time understanding my decisions now, later in life I hope they see the struggle it was to make decisions when JD has a whole different set of needs.

Monday, November 10, 2014

The Space Where Our Minds Meet


As a writer, I find it quite interesting that my son has a communication disorder. You see, my mind works in words - I can hear them flowing in my brain, I can even see me typing them in my mind as I speak. It's hard to shut them off and some days I feel like my head will burst if I don't put pen to paper. This week has been one of those weeks. I've just had this intense need to write, this urge that won't be fulfilled until I sit down and do just this - type. It's hard to organize my thoughts as they ebb and flow in all directions, swirling and racing. But these words that I love so much, I know they come so hard for JD. His autism makes it difficult for him to express himself.

Much of the time JD lives in his own world - seeming to be deep in thought. Sucking his thumb, staring into space as his rubs the edge of his monkey blanket back and forth; he leaves me to wonder what he's thinking about. But luckily there are moments when JD lets me into his world.

Like tonight...I was putting JD to bed and he wanted to tell me a story. Something about a Lego Ninjago warrior that he's worried will lose his power and be destroyed. After trying to explain to him that the ninja wasn't real, he went into great detail to dispute my claims and explained this warrior and what had happened to him. He was truly worried about this warrior and didn't want to go to sleep until we discussed it. It was at that moment that I realized - although JD has a difficult time communicating with his words, his mind races just like mine. He thinks of stories and lives in this universe where it's hard to concentrate on reality. His mind is also like a dam that's about to break but unlike me, he doesn't have a way to get it out.

I can't imagine how frustrating that must be. Now thinking back I realize I've heard it many, many times in his speech. He stumbles and hesitates, gets excited looking for the right words to explain what he's trying to say. But when left uninterrupted, unrushed, he can tell long stories with extreme detail and precision - it's like once he begins, it all flows.

That's the place I love. It's the space where our minds meet. I understand the need he has to tell his story, whether or not it makes any sense to anyone else. It's in those stories that he makes sense of the world, tries to connect to other people and makes room in his brain for new information. His rambling stories are like my ramblings blog posts - they clear the mind and give our bodies a sense of ease that can't be found anywhere else.

I'm thankful for those stories, those words, because I know so many kids like him don't have them. It's easy to get frustrated by the repetition, the rambling and the crazy sound effects that accompany his stories (and if you know JD you know what I'm talking about), but it's moments like tonight that remind me that it's his way of sharing his world with me. :)