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. :)

Saturday, March 22, 2014

Happy 6th birthday JD! It was SUPERHERO-tastic!

What a great week! JD turned 6 years old on Thursday, March 20th. I can't believe how big he is... and what I REALLY can't believe is that I started this blog FOUR years ago! It was right after his 2nd birthday! WOW how time goes by fast! JD has changed so much, and come SO far. Each birthday really gives me the opportunity to look back and thank God for all that he's learned and accomplished and for all of the people in our lives that have been there to help support and love him!

This was another year filled with amazing feats! JD's almost finished with his first year of Kindergarten at First Hope and I could not be happier with his progress! He's learning to read, he can do addition and subtraction facts, his comprehension skills are fantastic and he's made a lot of strides with social skills. First Hope has been such a blessing in our life and I'm very excited to say that he will be moving up for first grade there in the fall!

Another big event for this year was having JD's first true birthday party with friends. In the past, we've done birthday parties, but it's been family or friends of the family, not really JD's friends. Mainly because he didn't really have any. One of the big benefits of being at First Hope is that he's surrounded by REAL friends! Both in his special needs classroom and his inclusion classroom. He was extremely excited about his birthday this year and really understood that we were having a party for HIM! We invited all of the boys in the class to a superhero-themed party at a place called Hukoo's. There were trampolines, bumper cars and games. It was loud and crazy and fun! It turned out really well and JD had a great time. I was so thankful that so many of his friends came; and even with a group of boys just like him (on the autism spectrum), they all were amazing!

I have to share a bunch of pictures from today because I'm such a proud mama bear! Enjoy!

JD with mommy and daddy, my favorite picture of the day!
A vist from Iron Man!!
Group picture!
JD playing dodgeball on the trampolines
Superhero cake and cupcakes!

All of the friends! :)

Blowing out the candles
Pirate ship air shooting game - JD wasn't up for it, but Kyle LOVED it!

Kyle and Griffith

Kyle and his best friend Jordon on the motorcycles
Family Party Time!

 Cousin Love!

Monday, February 10, 2014

The Bond of Brothers

If you know me, you know I'm the first one to admit that I was absolutely certain my third child was going to be a girl. From the moment I found out we were expecting I could just feel it... her name was going to be Savannah Kaitlyn Graham and I even bought her the perfect yellow and blue toile bedding just weeks into my pregnancy. The only problem was Savannah wasn't a quite the girl my heart was set on... At my 20-week sonogram the doctor told me (and many members of my family who were in the room) that we were having another BOY. I hate to admit it, but after I told him to "check again", I sat there and cried.

Of course we were blessed with my beautiful baby, Kyle Logan Graham, more than 4 years ago. He's quite the crazy little man and has the funniest little facial expressions. I can't imagine my life without him. But every now and then, Savannah creeps into my mind... I often think - I wonder why God gave me a second boy when I felt so strongly that I was having another girl? It's an easy answer though, one that I've known for a long time.

See I've come to determine that boys need brothers, especially my boys. Ashley on the other hand is perfectly content being the only "princess" in the house. But JD and Kyle, they were meant to be together. Together they are wild, crazy, messy boys. They drive me absolutely MAD, but they love every moment of being together. You can't have one without the other.

But God knew what he was doing when he gave me Kyle because he knew more than I yearned for another girl, JD would need a brother in his life. Kyle never judges JD. He only admires him as the perfect big brother. JD can do no wrong in Kyle's eyes. I know one day Kyle will realize that JD has special needs, but what I also know is that the moment he does, he will stand fearlessly against anyone who may treat him any less than normal. That's exactly why Kyle has the personality that he does. He's not only the amazing little baby in our family, but one day, he'll actually play the big brother role for JD since there's a good chance that his developmental age will be older than JD in just a few years.

Having boys is not for the weary, and I don't know how many time I want to pull out my hair and scream from the shenanigans, but I love them. And most of all, I love that they have a bond that can never be taken away. Brothers for life... oh I'm in for it!

Thursday, January 16, 2014

Autism is like living Groundhogs Day the movie

I never actually saw the movie Groundhogs Days, but from what I've heard of it, it's a lot like having a child with autism. If it were up to JD, every single day of his life would be exactly the same. Same food, same tv shows, same clothes, you hear me. And most of the time I'm ok with that, but tonight when I was asked (aka yelled at) for "popcorn and popsicle" after his bath I just had to scream "I'M COMING!.... ERRRRR!" Trust me JD, I know the routine, you don't have to remind me. Those reminders just wear me out.

I know that you have to have three cut up cinnamon rolls for breakfast, and for lunch you have five slices of Boarshead oven gold turkey with strawberries (also cut up), a bag of goldfish, two RED bags of fruits snacks and of course the juice box which you MUST drink before you can eat anything else. Then for dinner you have chicken tenders (again cut up), more strawberries, goldfish and fruit snacks. And finally, once you're done with your bath you immediately require an ORANGE popsicle and popcorn. I don't know how you eat the same thing every single day. Not only do you have to eat the same thing, but in the same order. Well at least we made three different foods onto one plate - that was a huge accomplishment since you used to freak out if they were next to each other.

Maybe it's because I've been sick this week, or because it's just dawning on me that there's a possibility that I could be feeding my child "popcorn and a popsicle" every night after bath for the rest of his life, but I'm just worn out. Autism can do that to you. It's not easy, even on the good days. The only thing I know for sure is that tomorrow will be just the same...