$19,457.00!!!! The Next Step in Our Journey

I remember the call so vividly - the day JD was diagnosed with autism there was ONE person in my life who could understand what I was going through. Her name is Amy and her middle son Harrison has autism. We had met a few months earlier through what I can only describe now as divine intervention. I called Amy the night we found out about JD, sobbing hysterically because she was that knew how I was feeling. I had no clue what my future held. When someone tells you your child has a major disability you instantaneously realize that what you thought your life was going to be like is thrown out the door for some massive unknown space. But back to the call...

Amy listened as I cried, and let me talk through my range of emotions. But at the end of the call she got real. She said - "Lindsay, you are JD's advocate. He NEEDS you to be strong because the next few years will define so much of his life." She wasn't talking about therapy, sure that would be a major part of the my life and I would have to fight with insurance companies to pay their fair share. What she was talking about funding. 

Amy told me - "Listen Lindsay, from this day forward, until JD gets into Kindergarten you will have to fight for him. Don't get me wrong - you'll still have to fight for him after he goes into Kindergarten, but these next few years will define so much." Amy went into great detail about something called the McKay Scholarship. A state-funded program that allows your child to take money that would otherwise go to their public school and use it for a private school of your choice. There was a matrix... 251 to 255. And my whole goal as a special-needs parent was to get a 255 because that meant the most funding. 

Amy told me - "Lindsay, as a mom you will naturally want to focus on what JD CAN do, but you have to change your mindset. You have to focus now on what he CANNOT do. You're going to go to meetings, lots and lots of meetings, and people will ask you all these questions about his development. Don't lie to make his case look better! If he can't say 5 words, don't say he can because you wish he could - this will only hurt you in the long run! His funding is determined by what he CANNOT do, so take that mommy mindset and flip it upside down. You want the most for him, so you have to focus on the bad for a few years."

She was dead on. As a mom, my natural instinct was to "brag" about my kids... Ashley walked by this month... JD rolled over on x date. We ALL do it. But what I had to realize is that now I had to completely switch my mindset and focus on what my child couldn't do. 

For the last three years I have been to so many meetings, so many therapies, so many schools discussing the things that my son cannot do. And the fight is now officially over. Last month we found out that JD got a 255 matrix score - the highest you can get! We were hoping, fighting and praying to get a 254 and when 255 came in I cried. Then this week we found out that his funding is $19,457! I feel like I'm still in shock, but what's even stranger is that I feel a weird let down from it all being over. 

I feel like McKay has been my goal for so many years now, and it's over. I keep staring at the screenshot in disbelief. I'm kind of lost in a way. For the first time in three year I can breathe. No more IEP meetings. He starts at First Hope in August and we'll be on the next phase in his life! Without the McKay Scholarship there would be no way that he could go to this school (as you can see from the picture, the tuition is extremely expensive!) but we know it's the best place for him!!

I know this is just the next step in his journey. One door closed and another one opens. I'm a little nervous for what the future holds, but I feel SO amazing in our accomplishment! I'm also excited because we can finally begin focusing on the GOOD rather than the BAD!!! Thank you Amy for giving me the first direction from day ONE! And thanks to everyone reading this for being there for us along the journey!

Life of a Special Needs Dad

Parenting isn't easy, I think all parents can agree. But when you have a child with special needs, it takes parenting to a whole new level. We spent the last four days on a family "vacation"... hahahaha. (Seriously - work is more of a vacation than spending four solid days with three kids ages 6, 5 and 3!) But overall it was a great trip, LOTS of ups and downs but we try to focus on the positive. JD is actually getting a lot better at the whole vacation thing. The first day is always really rough, as we go through all the transitions of checking in, getting to the room, getting to the pool, etc.

Today for Father's Day, Jason and I decided to take the kids to go to Downtown Disney to see Cars Master Weekend. It's a car show that includes the Disney Cars - Lightning McQueen, Mater, Finn McMissel. Now I'm not really sure what in the world was going through our minds as we decided this but once we got into the parking lot I knew we were in for a FANTASTIC day, lol. Three kids, 100 degree heat, about a million people crammed in a small space, and a line about a mile long (1 hr exactly) to actually see the Cars. Hmmmm.... ok, decision time. Do we 1. - back out at the parking lot and feel that wrath of three kids screaming because they didn't get to go, or 2. spend the next two hours in the heat, listening to the kids complain, and smile at each other in mutual grief? We opted for #2. 

Now normally when we go anywhere I post all the good pictures, not the meltdowns. But sometimes I like to capture the reality that is special-needs parenting. Today was one of those days as I watched Jason deal with a meltdown the size of Texas as we left Downtown Disney without a Buzz Lightyear in hand. Now, about an hour prior, JD saw some kid holding one of those spinning Buzz Lightyear's and from that moment on he was obsessed with getting one. Now, of course we could have bought the stupid Buzz Lightyear, however, then we have to buy THREE. One for each kid. A $10 purchase is now costing me $30, so no thanks Disney, we'll go without. Especially since it will end up in the massive mound of toys, long forgotten is less than 24 hours. However that decision came with a massive autism tantrum. 

When JD has his mind set on something, it's SET. There's no turning back (hmmm, I wonder where he gets that from?) Now, I understand that all kids are like this, but with autism it's taken to the Nth degree. And now that JD is getting bigger (he's 5 and a half), it's really hard to chalk up those tantrums to the terrible twos or threes. Now he just looks like a super spoiled kid and it feels like the stares come from everyone in a mile radius. 

Jason always has the wonderful duty of stepping in during those tantrums, picking JD up and walking out from wherever we are. Every single time it happens I thank God that he gave me a husband that is 6 foot 3 and has super muscles so he can throw a 60-pound child over his shoulder without a blink. I can't do it anymore - JD is just too big and too strong. He fights back, hits, punches, bites and screams. It's the most stressful situation I've ever been in. My job during those moments is to grab Ashley and Kyle and follow Jason out as quickly as possible.

It's times like those that I remember how much having a child with autism has changed our lives. Lots of parents can't take it, some check out and some even leave. The divorce rate for parents of children with autism is extremely high. And I can understand why - it's extremely stressful. ANY family outing has the potential for a nightmare. But my husband has never taken the easy road out - he is probably the best dad I could have ever asked for. 

When JD was diagnosed, Jason came with me to EVERY doctor's appointment. He came to EVERY therapist evaluation, and a lot of his actual therapy sessions. He has been at EVERY school meeting, and knows all of the kid's teachers by their first names. I don't know how many times JD's teachers and therapists have said to me how unusual that is - most dads leave it to the moms. I'm always shocked when they tell me that because Jason would never want to be anywhere else.

So to celebrate this Father's Day, I want to share some of the moments that make my husband special. He's a superhero to me! :) 

The Day is Almost Here...

More than three years ago JD was diagnosed with Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD) and Sensory Processing Disorder (SPD) and at that very moment my entire life changed. Like any mom who was faced with this type of news, I went into research mode. I spent hours upon hours on the internet, finding out as much as I could about his future and mine. Pretty much immediately I became what is called an "Autism Warrior Mom" - the mom who fights for therapy, who works the system, who knows everything there is to know about: Speech Therapy (SP), Occupational Therapy (OT), Applied Behavior Analysis (ABA), Play Therapy (PLAY) Individual Education Plans (IEPs), Behavior Intervention Plans (BIPs), Health Care Plans (HCPs), Early Steps and Part B. Very quickly my life became one acronym after another. I learned insurance codes, kept ongoing spreadsheets of therapy costs, and researched all the best therapies. It was a full-time job, and luckily at the time I was a stay-at-home mom. But with three kids, ages 3, 2 and 5 months, it wasn't easy even if I didn't have a 9-5 job.

It feels like a blink of an eye. JD was 2 then and now he's 5 and a half. He can talk now. He can run, jump, climb, even ride a bike. He can color, write his name, and draw detailed pictures of Spongebob, including his spatula! He's amazing. He is loving and funny. He stands out from the crowd - and I don't mind it anymore. He's quirks are what makes him... well, him. I love him more than words can ever express. He has taught me more about life than anything I have ever experienced. 

But tomorrow... ohhhhh tomorrow. Tomorrow we meet for his kindergarten transition IEP meeting. For anyone that has a special-needs child, you know what I'm talking about. And when this meeting is all said and done, I will go into more detail. Until then, all I can say is that this is a HUGE day. It determines SO much. I'm more nervous than I've been in a long, long time. I'm already planning my post-stress migraine. Why? Because I've been working up to this day for THREE years. 

I think I'm ready. Wait, I KNOW I'm ready.  Because if there is one gift God gave me, it's the will to win. To those on the outside, this may seem kind of funny. But any Autism Warrior Mom or Dad can tell you that's not the case. This is serious business. 

Tomorrow will be a good day. And I can't wait to blog about it. Until then, what I want to say is THANK YOU. Thank you to everyone who has supported JD. Who has been there for him, followed his journey. I know I don't write as much as I used to, but that's because things are a little smoother now. Blogging has always been my outlet during stressful times and I'm so thankful for the friends and family who have stood beside me through it all. 

I'll leave you with a recent picture. One that shows just how much JD has grown up. I don't know where the years have gone, but I do know that this little boy, and his brother and sister, have made my entire life worth living for!

Something to Fight For

When I have tough days I find myself on Pinterest looking for words of inspiration, whether it's when I'm having a hard time at work, struggling with my faith, or feeling alone in this autism journey. It's been a really rough week - Jason and I are coming up to a time when we need to make some big decisions about JD's schooling and therapy. I'm a planner so to say I stress about the future is a major understatement. There's never a day that I don't worry about his life and think about how I could be doing a better job as his warrior mom. 

Sometimes I wonder why God gave JD to me. But it's in these weeks that I can see why. He knew that I'd fight for him, stress for him, plan for him, talk for him, cry for him, advocate for him. He knew that by giving JD to me, I would protect and love his angel and do anything in my means to give him the best life possible. 

Being an autism mom isn't easy, and some days I want to throw in the towel and wave the white flag of surrender. But instead each night I pick up the towel, wipe away the sweat and tears, wash it, dry it and hang it up nicely because I'm a STARTER in this game and I'll never let him down - he's counting on me to win. 

Kicking Off 2013!

It's hard to believe it's already 2013, where does the time go? The kids went back to school today from their Christmas break and I have to say that I'm happy to get back to the normal routine! We had a wonderful holiday though - it was so much fun this year because JD really understood the concept of Christmas. He was really excited about Santa coming, and opening presents and having a "birthday party" for Jesus. He's growing up so fast!

His big present this year was a new bike and he loves it. It has taken him two years to learn how to ride a bike, but he's finally got it down. We're still working on using the brakes, but for now his feet work!

Life After Autism

Look at this boy... he's so happy. I love that smile, how he beams from ear to ear with love. You know there are some days when things seem normal around our house. (Ok, maybe not days, but more like moments). Like this morning. I was getting my camera ready to take pictures at a charity event and asked the kids if they wanted to take some pics. Normally JD would say NO WAY or give me a bunch of silly faces, but today he was all grins. Pictures like these remind me how invisible autism can be.

If you saw JD you'd think he was just a normal kid. He has no outward signs of a disability, and we're very fortunate that he has stopped a lot of the outward signs of autism, like stimming or flapping. But inside that brain is a very different world. It's creative and fast, it shoots from one idea to another. It hears every sound, senses every movement and feels every touch in ways us "neurotypical" people don't. How do I know? Just by watching JD interact with the world.

You might not see it, but JD's autism makes him different that the rest. Add in a little, sensory processing disorder (SPD), OCD and some ADHD and things can be a little crazy. But man do I love this kid. He has a heart full to the brim of gold. Sometimes that gold is hard to see... like when he's hitting his siblings or spitting at me when he's mad, but I know it's there. When he turns to me and says, "My mommy - I love you" it makes me melt.

I wasn't sure if there'd be life after autism, but there is. It's changed our lives so much, but it's made me a better person for sure. Tomorrow I'll be spending my day at a huge event - the Autistic & Handicapped Children of Central Florida's 39th Annual Holiday Party. More than 1200 kids with disabilities will be there. And while 3 years ago I would probably have never been involved, today I can say that I brought awareness to more than 100 people in my company through volunteering. 

I'm so proud to be a mom of a child on the spectrum. And while some days I really don't want the job (just being honest!) I wouldn't change it for the world. God gave me JD for a reason and whatever it is, I hope I'm living up to His expectations!

What a Surprise!

Two and a half years ago I started this blog as a new "autism mom" - scared, worried and unsure of the future. As a professional writer, blogging quickly became my outlet. It's been a place for me to share JD's development, my lessons learned and even some inspirational stories about our journey on the autism spectrum. I never imagined that anyone outside of our family would ever read my blog, but it's been a wonderful surprise to find out that people around the globe have stumbled upon it, one way or another, and have contacted me with questions, comments or just a quick "you're doing great mom!"

Just this week I received such a nice surprise from one of my readers. Her name is Deborah and she's one of my husband's friends and previous co-workers. A package arrived in the mail with a card and a beautiful pendant with five hanging charms: the first says Hope, the second is an autism ribbon, the third a little boy, the fourth says Faith and the last being a puzzle piece - the universal sign for autism awareness. How touched I was to receive this gift!  

Thank you Deborah so much for thinking of me! That was so thoughtful of you! I can't wait to wear it proudly - especially in April when it's Autism Awareness Month!

It's moments like these when I realize how far we've come. Not just JD, but our entire family. I'm no longer scared, just thankful that we've had so many wonderful people in our lives who have stood there and watched JD grow. Whether they're online, at work, or families and neighbors - we've been so fortunate to have helped spread the word about autism by living it first hand. 

This little guy is turning five in March. It's hard to believe it's almost been three years since his diagnosis. And although we struggle daily with different issues, I'm still amazed by the smallest things. Like today, watching JD drink from a bottle of water. Something so small took him about a year to learn how to do. No longer does water pour all down the front of his shirt... he's a bottled-water drinking pro! :)