"Merry Christmas Mommy"

I can't believe Christmas 2011 is over and in less than a week it will be 2012! Where does the time go? I'm always amazed at how much things change over a year and JD's progress is no exception. I remember last Christmas pretty vividly. JD was all into dinosaurs because Nick Jr. just came out with a new show called "Dino Dan." I think I can easily say he got about 50 dinosaurs for Christmas and spent the entire day lining them up from smallest to tallest across the room. Jason and I have always laughed at the fact that JD could name dozens of dinosaurs (some that I can't even pronounce!) before he could ask for a glass of milk - but that's the interesting part of autism. Their special brains just focus on one specific subject and can soak it in like a big sponge.

But what made this year so special was the exact opposite - JD didn't hone in on a specific toy or organize them instead of playing - he jumped right in and played "appropriately" as they call in in therapy. See most kids just do that naturally. They get a plane, they pretend the plane can fly. The get a car, they start making racing sounds. But a lot of kids on the spectrum don't do that, JD being one of them. I'm a little bit of an organizer myself, so his OCD about keeping his toys nice and organized makes me secretly smile inside, but this year it was so good just to see him play and have fun with Ashley and Kyle and his two cousins. His favorite toys were still the Thomas trains, but he also loved his new bounce house, motorcycle, and Cars racetrack. It was really such a wonderful feeling to watch him play.

This year was extra special for another reason. It's the first time Jason and I took all three kids to the candlelight Christmas Eve service. As hectic as it was, it was so nice to finally go all together. JD loved it - he was mesmerized by the music and the candles. Ashley was wonderful  and Kyle, our two-year-old, was not quite as happy to be there and cried through 90% of it. BUT we did it and we did it all together. We just went with the flow. The kids are growing up so fast.  Here's my post from Christmas 2010.  I can't wait to see what next year brings for JD!

Church for the WHOLE Family

When you have a child with special needs, it's really hard to feel like you fit in anywhere. You want to do things as a family, just like other families do, but often times when you go out you feel judged, or looked down upon.

For example, when JD is having a bad day and is laying on the floor throwing a tantrum, it's really hard for me to ignore the stares from parents across the room wondering why my four-year-old is acting like a two-year-old. Sadly enough, it's really kept me and Jason from going out and doing things that we really want to do.

One of those things is attending church. We've gone a few times in the past, but the anxiety I would get about it made it such a miserable experience. Dropping JD off in a large Sunday school room with people he doesn't know (and who don't necessarily understand him or his needs) really freaked me out. The crowds, the loud noises, the lack of routine - it all gave me sensory overload so I can't even imagine what it did it him. But today was very different.

About a week ago I was online looking for churches with special needs ministries. Jason and I wanted to find somewhere where our WHOLE family fit in - not just me and him, and our two "neurotypical" kids - but somewhere that would accept and welcome JD as well. I looked at the First Baptist Orlando website and found a program called "Special Friends." It's for children and adults with special needs. They even have a special sensory room! I reached out to their program director, Michael Woods, this week and he was extremely welcoming, so today we gave it a try.

What a success! All three of my kids enjoyed their time there, and JD was in a small classroom with teachers who understood him and made me feel comfortable leaving him with them. Jason and I spent an hour relaxing, and worshipping together, and when we left we both were amazed at how great the experience was.

I'm really thankful that there are programs like this in our community because there are so many families just like ours that have the same need. Our family motto is, "We do things together" and the Special Friends program allowed us to do just that!

If you want more information about the Special Friend program, visit their website at http://www.firstorlando.com/Adults/Special_Friends.aspx. I would highly recommend it! :)

Moves Like Jagger!

Last night the kids had their preschool Christmas Show and it was so much fun to see each of my little ones get up on stage and dance with their friends. I knew Ashley would love every minute - she's quite the drama queen and loves being the center of attention (hmmm... I wonder where she gets that from?) and I had a feeling that Kyle would be the hit of the show, which he was as he pointed the crowd as they cheered him on. What I wasn't sure about was how well JD would do - or if he would even make it to the stage.

We arrived at the hotel where the event was taking place and it was FILLED with probably 200 kids yelling, running, laughing, crying - it was total chaos. With Monkey Blanket in tow, JD stuck in his thumb and walked bravely through the masses. Just that moment alone was a huge accomplishment because a year ago he would have been totally overwhelmed. I had to leave him "back stage" with his teacher so Jason and I could go get seats. I gave her my cell phone number just in case he decided it was too much to handle... but no call! So far so good!

Finally it was his turn. His class came out and headed on stage. JD was NOT having it at first. But after cheering him along and telling him I was right there (from the first row of course) he went on stage. The music came on and all his little classmates started dancing. He stood in the back, thumb in, holding monkey blanket, just staring at the crowd.

I was so proud of him for getting on stage, but I have to say for a minute there my heart sank as I watched all his friends singing and dancing along to the music as he stood there. To anyone else it probably looked like stage fright, but to me I just saw his autism. As a parent you just want your kids to fit in, to be like the others, and at that moment it was abundantly clear that wasn't the case. I, of course, was probably the only person who noticed. But I was just trying to take in the moment, watching him stand up on stage in front of this HUGE group of parents, with music, clapping, lights, etc. It was a sensory nightmare!! And he's only 3! But then he really surprised me...

Up at the front of the stage was a microphone used to pick up the voices of the children singing. JD walked right up, grabbed the microphone and started pretending to sing! The crowd laughed and cheered him on and he thought it was so funny. I was really surprised, it was like he came out of his shell on stage. Who knew that my little guy had moves like Jagger? ;-) Here's a before shot in case you didn't believe me!...

Team JD Raises $1500 for Autism Speaks!

Thank you! Thank you! Thank you! A few weeks ago our family participated in the annual "Walk Now for Autism Speaks" in Orlando. This was our second year fundraising (although only our first year walking because in 2010 I had emergency surgery a week before the walk!). I can't tell you what an amazing experience it was. Team JD brought in more than $1500 for autism research and awareness - WAY surpassing our goal of $500! This wouldn't have been possible without the donations of our friends, family and coworkers who go out of their way to support us not only through the walk, but every day as they follow JD's journey.

Being there with the thousands of families like ours was so peaceful. There were no stares, no excuses, no awkward moments - just understanding and love. As we walked around the lake at Cranes Roost Park on a beautiful sunny day, it reminded me that no matter where I go, or what I do, autism is always a piece of me. Autism may have made my life a little more difficult, but what I received in return was way more valuable - an extended family of people all over the world who have children just like mine. It seems like each week I meet someone new who has been affected by autism and there's an instantaneous connection. I'm proud to be an autism mom - it's not easy, but it's worth every moment!

Is it Destiny?

Since JD's diagnosis a year and a half ago I've heard a certain line many times - "God gave you JD because you're such a wonderful mom and he knew you could handle it." At first it made me cringe inside and out, like it was the stupidest thing anyone ever said. But a year and a half later I've kind of come full circle thinking maybe they're right.

See, part of me wonders if it really was destiny. I was telling a friend at work today that my ideal job would be to lead the diversity and inclusion efforts at our company. Of course I have a passion for it because of JD, but I think that passion came way before he was even a "twinkle in my eye" as my husband says.

I can pinpoint it as far back as 11 years ago, when I was a freshman in college at the University of Florida. There was a class called "Exceptional People in School and Society" and I can truthfully say it was the most life-changing class I have ever taken. I took it because it was supposed to be an easy A, but what I didn't expect was how much I would learn.

The class was designed to put yourself in another person's shoes - literally. We learned sign language (I can still sign, "You are so beautiful to me!"), and spent an entire class in silence. We had to walk around campus blindfolded to experience life without sight. We volunteered with underprivileged children in the community, playing games and singing songs, keeping them off the streets. There was so much more, but what it all came down to was this - these exceptional people are PEOPLE, and they should be treated with respect, dignity and kindness, just as you would treat anyone else.

Who would have known that a class I took when I was 20 years old would have such an impact in my life a decade later? Maybe God was preparing me, not only to take care of my little boy, but to help the world understand and accept these Exceptional People. I feel so thankful to know my passion, and to live it first-hand, because some people search for it their entire life.

Miss Katie - Our Guardian Angel :)

"We are each of us angels with only one wing, and we can only fly by embracing one another." ~Luciano de Crescenzo

There are certain people who have come into my life that I consider guardian angels. These are people who have had a profound impact on who I am, who I feel that God sent to me (or vice-versa) when I needed them most.

A little over a year ago I randomly went on Craiglist looking for a part-time nanny that might have experience with children on the autism spectrum. I was freelancing at the time and just needed someone to watch the kids while I worked in my home office. Normally I don't think I would have ever looked at Craigslist for babysitting options, but for some reason that day I figured I'd take a look.

I searched the term "nanny and autism" and ONE result came up. It was for a young lady named Katie and she had moved to Orlando from Wisconsin with a background as an ABA therapist assistant. She was looking for a part-time nanny position and immediately I called.

We must have talked on the phone for two hours that night. I remember sitting in my bed, telling her all about our family and JD's recent diagnosis. Kyle wasn't even a year old yet, not even crawling, and JD was in therapy everyday.

Katie and I clicked from the very first moment - it was like we had known each other for years. Later that week she came over, met the kids and started working for us. At that point in time I had no idea what kind of impact she was going to have in my life.

When Katie started JD wasn't speaking, couldn't run, swing or go down a slide. When you fed him you could only put a few little pieces of food on his highchair at once (NEVER different foods) or he would throw them all over. He would have terrible tantrums, hit, pull hair and scream. NONE of it phased Katie. I had never met anyone so patient and loving as her in my life. We would sit and chat each day and became so close. I learned about her life, she learned about mine and it was like having a best friend spend each day with me and my kids.

Last October I was really sick - I was in and out of the hospital with gallstones. In November I had to have emergency surgery and at 1:00 a.m. Katie drove 45 minutes to our house to stay with our children for three days while I was in the hospital. I never had to worry for a second that my kids were being taken good care of. She knew their daily drill - and all of JD's routines. The most amazing part was that during the weekend I was coming home, we were scheduled to have a huge carnival birthday party celebrating Kyle's first birthday and Ashley's fourth birthday. Katie put on the entire show - organized all of the decorations, the party favors, the face painting, the organization and clean up... everything. I was stuck on the couch, so thankful for having her in my life.

That was a year ago and I can't even begin to list all of the things Katie has done for our family, and for me, since then. She is the one person who has been there, day-in and day-out, right next to me and Jason, helping us raise our kids. She's been with us through therapists, schools, moving, even marriage drama - and never skips a beat. She loves my children like they are her own and they love her just the same. She is like another mother to them and I couldn't be more thankful for that.

Today our family participated in the "Walk Now for Autism Speaks." Katie was right there with our family, proudly walking on behalf of JD. And while I took some pictures of her with my kiddos, it reminded me how blessed we are to have her in our lives.

Katie - I could write a novel about how you've changed my life. Your love, patience, kindness and spirit are unwavering and I can't thank you enough for all that you do for me, Jason and the kids. I look at this picture and it makes me smile knowing that you are our guardian angel - God sure gave me the best one he had!

I love you Katiebug!!! ~Linds

Happy Birthday Kyle!

Today was an exciting day, not just because of the autism walk, but because we're celebrating our youngest child's 2nd birthday. Kyle is the sweetest little guy but I can already tell he's going to give me and Jason a run for our money when he's a teenager... he's the dare devil, the rule breaker, and the pretend crier in our family. Gotta love it!

Kyle's 2nd birthday is kind of bittersweet to me because it reminds me that JD was diagnosed the day after his 2nd birthday. Looking at Kyle and his development, it's like day and night of JD's when he was that age. Kyle is such a chatterbox and wants to be in the middle of everything. He's fearless, all boy, wants to wrestle and laugh and is so interactive. The day JD turned two I remember how overwhelmed he was at his birthday party. He didn't talk then and I could tell that he would have done anything to run and hide away from all the activity. I didn't know at the time that it was autism, but now looking back I wonder how I didn't see it sooner.

This is hard to say, but I'm so relieved that Kyle isn't showing any of the signs for autism. I worry each day about it and I probably won't stop worrying until he turns three, by then I think we'll be in the clear. It's also hard to say that I worry about the day that Kyle will be developmentally "older" than JD... I know that time is coming soon as they're about the same developmental age now.

As a parent of a child on the spectrum I feel like just when you think you've conquered one issue, another comes up. But Jason and I are so proud of all three of our little ones and wouldn't change a thing! Happy birthday baby Kyle - I can't believe it's been two years already!

Countdown to the Walk!

I'm SO excited - tomorrow is the Autism Speaks walk! Our team has raised $865 and I'm hoping we can hit our goal of $1000 over the weekend. I'm getting a little nervous, not about the crowds or the expected chaos of the event, but about the emotions I will feel surrounded by so many other families and children struggling with this disorder. Autism can make you feel so alone at times, like no one could ever understand it, but I'm actually really looking forward to going to an event where kids like JD are the "norm" - where I don't have to worry about the stares, or whether he's going to have a meltdown. I'm so proud of my little boy and the walk is just one little way to show it! Go TEAM JD!!!

Amazing Video!

I don't usually like to watch videos about autism because I'll end up crying, but this is a really good one. It's amazing because each child with autism is so unique, yet as parents we face the exact same challenges. If you have a few minutes, I would really love if you would watch this...

A Hug Goes a Long Way

I think Shel Silverstein had it right when he wrote this poem. Anyone who knows me knows I LOVE to hug. I would hug everyone if I could. I just think it's one of the best gifts you can give someone. So my blog tonight is about how much a little hug can mean in the world of inclusion...

Tonight was a great night. Jason and I took the kids to dinner at one of our favorite places - the Joe's Crab Shack by our house has this awesome pirate ship playground where the kids can run and play while we relax and eat. The funniest part is that I hate seafood, however I go there at least twice a month because it's like free babysitting.

While we were there we randomly ran into some friends of ours who, like us, have three kids ages five and under... pretty uncommon nowadays. I love spending time with them because they aren't even slightly phased when my crazy children and run around screaming. It's almost easier when all six of the kids are together because they just entertain each other.

But the best part was when my friend's little boy, who is the same age as JD, came up and gave JD a BIG HUG when they saw each other. JD smiled from ear to ear and it made my heart melt. Watching JD grow up and make his own little friends just makes me so thankful for the innocence of little children. They don't see his autism, they just see another friend. That is the true definition of inclusion.

When I grew up I lived in a bubble - I wasn't really exposed to anyone different than myself or my family. We were standard upper-middle class WASPs (White, Anglo-Saxon Protestants). I never realized that there were so many different people in the world with so many wonderful things to learn from.

As a parent of three children, one having a disability, one of the goals I strive to do each day is teach my children that there are so many amazing, different people in the world. People may look different, speak in different languages, have different abilities, but at the end of the day I want my children to know that everyone is the same inside - and that everyone should be loved and respected.

So to my friend's little boy... you'll never know how much that hug meant to me, it's makes me so happy to know that you're JD's friend. It's the little things that mean so much! :)

I Love This!!

I love this picture... I wish I could tattoo it on my forehead! Not just for moms with kids who have autism, but for every mom. The worst part is that I'm sure I was that person at some point in time, before I realized that raising kids was nowhere near as easy as I thought!

I think every mom feels this way at some point in life - when you're in a store, restaurant, walking into daycare - and your kid throws a tantrum and there you are, feeling the STARES coming from all around.... Deep Breath Now! I hate that feeling and when you have a child on the autism spectrum you get it any time you go any where.

I made the decision to take the kids to a fall festival at work last week. I knew it wasn't going to go well, but I figured it couldn't be too bad... LOL. The day started with JD not having ANYTHING to do with his pirate costume, it's that rayon material so I'm sure it totally freaked him out when it touched his skin. Strike 1 - it's ok - I've got Plan B - Halloween shirt with a skull on the front - good thing mommy is always prepared! :)

We get to the festival and there's a guy twisting balloons. JD waited in line patiently and I was impressed. Then came the carnival games... oh lord, I laughed as the nice lady volunteering tried to explain to my three year old son that he had to stand on the taped line to throw the little baggies into the hole two feet away. I let her make the effort, hoping he would somewhat listen, but he just did his own thing, running them up and throwing them directly into the hole... she was fine with it - we're still going strong!

Then comes the face painters... let the fun begin. We ask JD if he wants to get his face painted and he says yes, but when he gets in the chair he FREAKS out as the lady starts putting paint on him. The screaming and crying begins and the poor lady looked at me like, "I'm SO SORRY - I swear I didn't hurt him!" I explained to her that he has sensory issues so he probably hated the feeling of the paint on his face. We moved on... ok Strike 2... no worries, I can handle this.

Next stop was walking through the different "haunted houses" on each floor. Of course I pre-walked them before he got there to make sure he'd be ok and not terrified, that there were no loud noises or people jumping out. We were good to go on four out of five, so off we went. Now - I work on a five story building and each of the haunted houses started when you got off the elevator. JD HATES elevators, so as we got in he cried a little, but as we went up each floor it got worse and worse. Finally at the top floor a lady turned around and asked me, "What did you do to him?" REALLY???? ARE YOU SERIOUS??? That's when I want to hand her a big sign that says, "dumbass - my child has autism - get over it." But I nicely smiled and walked away, saying he doesn't like elevators. Strike 3... ok, mommy is ready to go home.

I feel like this happens in some shape or form every day. But you know what, it doesn't make me mad, it makes me realize just how oblivious people are to the reality that not everyone in this world fits into the perfect little box. I'm just glad that I'm no longer that person. If I see a child having a tough time, or even an adult needing help, I don't judge them for being different. I'm just happy that they're here because our world would be a really boring place if we were all the same!

What's He Like?

If you know me, then you know that I love talking about autism. I feel like JD's diagnosis opened my eyes to so many things that I never knew existed. Like for instance, most people know the five senses - sight, touch, taste, sound and smell. But did you know there are actually there are two more? Proprioception and vestibular. Don't feel bad - I didn't know either until I was an autism mom.

Normally when people find out my son has autism they ask me a lot of questions about what he's like. How does he act? What makes him different? Does he talk? I really love it when people ask because it gives me the chance to not only tell them about JD, but also teach them a little bit more about what I've learned. Here is a little insight to life with autism:

• JD knows no strangers - he will say hi to the person passing by in the grocery store until that person responds. After about the 5th "hi" with no response, I want to scream at the person, "just say hi back!!" cause he won't stop until he does. He's also a "flight risk" meaning that he has no concept of being lost or hurt so he could run away at any time without the ability to get back.
• He loves to chatter when he's nervous or excited. He'll run up to you and talk to you, but you have no idea what he's saying. They call that "jargon" - it's speech, but it's not understandable. It's like an effort to communicate when he doesn't know what he's trying to say.
• We've finally gotten to the point where he can answer yes/no questions... normally when it's no, it's NO!! (insert the really loud screaming here). But most questions he can't understand - like what did you do at school today? or what's your favorite color? In this instance he'll just repeat the last word I said to him, which is called "echolaila." He does this because he knows I'm asking a question that requires a response, but he doesn't know how to answer it so he just repeats the question.
• He has what's called "food aversions" meaning he's super picky about what he eats. Right now his diet mainly consists of strawberries, bananas, chicken, goldfish and popsicles. He hates cake, candy, ice cream. Luckily he does like sprinkle cookies so we make sure we bring some to parties so he still gets a treat like the other kids.
• He LOVES routine and even though I'm a Virgo who also loves structure, this one drives me insane. Things have to be the same, day-in, day-out. If you change it up, there will be a meltdown, and I'm talking screaming, crying, biting, hitting, skin-turning-red meltdown. Here's an example - our evening routine. JD has to take a bath, watch a cartoon (the exact same one we've seen every night for a month), then we have to read two books - Dinosaur Parade and the Going to Bed Book, then we sing the same five songs, we cuddle and then he can finally get in the bed. If I try to take any of those items out of the equation, or do them out of order, he loses it. We live and die by routine at our house and I hate anything that will make us vary from it. His routine makes him feel safe, so if we change it, it totally rocks his world.
• You learn to expect the unexpected. JD can be thrown off by the littlest things. The other day I was running late to work and I didn't let him stop at the fish tank on the way into his classroom, I tried rushing him and BAM! it's over - he's lost it. On the floor, hysterical, biting his hands to express his anger at me. I felt horrible because I forgot that's his morning routine - he's gotta look at the fish tank for at least a good minute before we move onto the classroom - no if, ands or butts about it, unless you want to ruin the day.

There are so many other little quarks about autism, and at first it's completely overwhelming. But little by little you get used to it and adjust. The good thing is that you just learn as you go and try to roll with the punches. The reality is that even with all these little issues, JD is such an amazing little boy. Every time I turn around he's making me smile - like when I came home from work today and immediately he said, "mommy - wanna kiss?" OF COURSE I DO! :)

It's Been So Long!

Where has time gone? I can't believe November is around the corner and I haven't posted a blog in months! It's been an eventful summer at the Graham household. We moved in July (yes, the hottest month of the year!) so that we could be closer to my job, the kids started a new school, and I'm still trying to get all our ducks in a row - lining up a new pediatrician, finding new therapists, transfering JD's IEP from one county to another.... I feel like there's just never enough time in the day.

I saw a post on Facebook this afternoon from the Orlando chapter of Autism Speaks and I realized that the Orlando Walk is just two weeks away! On Saturday, November 12, our family will be out at Cranes Roost Park in Altamonte participating in the annual "Walk Now for Autism Speaks." I set up our Team page and I appreciate any support we get! My goal is not just to raise money, but to raise awareness. Since JD was diagnosed almost two years ago, I have met some of the most amazing children and families with autism. This "invisible" disorder is something that can make you feel very alone in the world, but I feel that education is the best way I can advocate for my son.

My goal in November is to write a new blog each day talking about being a parent with a child on the spectrum. I hope you'll come back to read more! JD has made such huge progress from the day he was diagnosed in 2010 to now and I am eternally grateful to the family, friends, therapists, teachers, coworkers, neighbors, EVERYONE who has supported him. And since pictures really can really say more than any words I will share these two for you:

This is JD at his 2nd birthday party, the day before he was diagnosed. He was scared, overwhelmed, confused, begging for help through his big blue eyes. Looking back it's clear at day...

Now look at my handsome little man - he's so confident and happy. Everyday he takes a few more steps forward and I'm so proud of him!

Understanding the "Spectrum"

When you have a child with autism you hear the word "spectrum" come up almost daily - it's something you become very familiar with. As science has studied autism over the years, it's become apparent that it is really an umbrella term for a group of developmental disorders, and when gathered together they are called Autism Spectrum Disorder or ASD for short. Referred to as "autism" by most people, ASD is a broad range of developmental issues seen in three main areas: communication, social interaction and repetitive or unusual activities/interests.

Over the past year we've been very fortune to watch JD grow each day, further and further to the "right" of the spectrum. That means that although he was diagnosed with moderate autism at the age of two, he is progressing to mild autism and hopefully into asperger's syndrome by his elementary school years.

However that's not always the case. Some children do not progress, especially those in the severe category. Although they make remarkable progress in their ability to function independently, they will never "grow off" the spectrum. The struggles these families deal with are monumental and their ability to love, nurture and accept their children is truly a gift.

There are moments when I forget how far JD has come, but then I'll see a story of a family whose child is facing far more difficult challenges. My heart goes out to them, because even though are children are so different, we are all experiencing the same pain. As parents of children with autism it's our responsibility to support one another - no matter where your child falls on the spectrum - because we're in this together.

That's a big reason why I have this blog - to educate people on the huge "spectrum" of autism. There are so many children and families under this umbrella that mainstream society overlooks. The children that, on the outside look perfectly normal, but are dealing with sensory, emotional, physical, and speech issues. But at the same time not overlook the children who are severely autistic, the ones that may stand out in a crowd because they're flapping, twirling, or speaking in gibberish. These children are all special in so many ways, and as the number of children on the spectrum increase, so will the need for society to be aware and understanding. I think we're making huge strides in this area, but each day we have to continue to educate. That's what is going to make a difference in this world.

We're Moving!

It's been a crazy month at the Graham household. I've been back to work now full time since January and my office is located about an hour away from our house (with traffic). That's pretty normal in Orlando, but for our family it means that I only get to see the kids for about two hours a day... not good!

On a whim we decided to put our house on the market to see if there'd be any interest. Four days later it SOLD! Great news, but that meant we had to go into warp speed to find a new house, find a new preschool for the kids, pack and move. So far we've found the new house and the new school. Now we're in the midst of packing and moving.

I'm super excited because the new house is only 15 minutes away from my office which means I'll finally be getting home at a regular hour! It's a really nice gated neighborhood with a community park and two pools. Their preschool is five minutes away and so far I'm really impressed. They're giving me the option of bringing in a shadow for JD while he makes the transition. It's a "normal" prek so I'm really excited to mainstream him. I think he's ready.

The past month has been an amazing month at work - I'm working on a project that could have a big impact on the autism community. It will take a long time to get it implemented, but it's moving right along. I'll keep you posted!

To Mainstream or Not to Mainstream...

Lately I've been stressing out over the fact that August is quickly coming and I haven't made a decision about what to do with JD. His therapeutic preschool program closed in the spring and we've been doing 1:1 therapy for 5 hours a day ever since. The problem with 1:1 therapy is that he never gets the chance to interact with other kids. So we want to get him back into a preschool, but the choices are quite limited for a child like JD, especially since he's what doctors consider "high-functioning."

Basically high-functioning means two things: he's too advanced for a school specifically made for kids with autism, and he's too far behind to go to a school made for "neurotypical" kids. It's so frustrating - we're just stick in the middle - I feel like there's no good place for him.

I've spent hours researching schools, trying to find all the options. There's the public school option (which in our case didn't work), there's the private ABA centers, which focus on behavior therapy, there are schools for sensory integration, and private schools that may be for regular kids but will take a kid on the spectrum if they feel he can keep up.

I'm in the interview process right now. I'd really like to mainstream him, so we're meeting the director of a large preschool here in Orlando to talk about starting him in August with a full-time shadow until he gets adjusted. The cost? Normal preschool rates, PLUS $70 a DAY for a shadow. Good Lord. We're talking like $2000 a month for PRESCHOOL.

I guess it will be worth it in the long run if it benefits him, but that's if we can make it without going broke first! My head is still spinning with options but right now I just try not to worry about it because it makes my stomach sick! :(

FAQ # 6 - What's been the hardest part of the last year?

Most people know that the puzzle piece is the official symbol of autism and there are a few answers as to why they use it. Here's my opinion - when your child is diagnosed with autism, it's like being given a 1000-piece puzzle in a box. You struggle to find the right fit every step of the way.

I think the hardest part of the last year has been absorbing all-things autism. After you get a diagnosis, you not only have to learn to deal with the wide-array of emotions, but you also have to become an autism expert (overnight if possible!). I've spent DAYS upon DAYS researching, trying to learn as much as possible about this disorder. I mainly spent my time learning about the various therapies available. In the beginning I spent way too much time on the computer. Watching videos, looking for specialists, finding options for schools. It started taking over my life and I had to stop. Unfortunately when you're a mom and your child needs something, there's no stopping until you've found it. At least that's how it is for me.

Then you have to start making decisions. That's the tough part. What therapies should you try? How long do you try them for? What if you don't like your therapist? How many hours a week should you do? There's so many options out there that there's no way to try them all. Then you start second guessing yourself because you pick one and then wonder if it was the right choice. I learned that eventually you have to pick something and stick with it, at least for a while. Everyone wants to make the right decision, but you have to just follow your gut feeling and hope it's right.

Recently I decided to go back to work full time. That was a really hard decision. Before I spent my days taking care of my three kiddos, driving Ashley to preschool, taking JD to therapy, entertaining Kyle. But the good part was that I talked to JD's therapists everyday. I was very entrenched in his therapy, probably too much so. Eventually we found a teacher/therapist that we loved and things have been wonderful for him ever since. I realized that going back to work was the best option for my family. I was able to provide JD the best therapy available, and I was able to do what I love. That's not to say though that I don't have moments where I wonder if it's the best thing to do. I guess only time will tell.

I feel like I'm maybe about 100 pieces into the 1000-piece puzzle, and I've got SO far to go. Each time you think you find a piece that fits, you pick it up, look at it from every single angle, put it back down, rethink if it really fits, and finally try it out. Maybe it will be done in 20 years or so :)

FAQ # 5 - How Has Autism Changed You?

I think when you become a parent your entire outlook on the world changes. It's the same thing when you learn that your child has a autism, or any illness I'm sure. I have changed a lot since JD was diagnosed a year ago. But I think the biggest change I experienced was waking up to the fact that there are literally MILLIONS of people in this world who are struggling with raising a child with a disability.

Everyday activities aren't easy for these families. We don't worry about things like playdates and school activities - we worry about doctor appointments, therapy options, money, insurance, schools, acceptance, awareness and so much more. Sometimes I wish that I could rewind the clock and experience a day before JD's diagnosis just to remember what life was like when our biggest worry was what to do on the weekend.... oh the simple life! It's not really something you can understand unless you've been in the same boat - so there's no way you can really get angry at people who are oblivious to it.

I think having a child with autism has made me a better person. It's given me patience, love, acceptance, awareness, forgiveness and so much more. It's shown me to appreciate the small "wins" in life that before I overlooked. It reminds me that the best thing you can do is cheer your kids on, not tear them down, because positive reinforcement is an amazing change-agent. It's also given me a life purpose, to raise awareness of this disorder make this world a little better for other families with children on the spectrum.

Here's a clip of an article that I wrote for work, that was distributed to more than 200,000 people around the country. It's just one way that I can make a difference. I'm already working on bigger and better things!

FAQ # 4 - What's Your Biggest Worry?

This is a good one. I'm quite a worrier, so at any point in time I have a million things running through my head. But if I had to name my "biggest" worry I think it would be bullying. It seems like everyday you turn on the news or read online that a child has either killed themselves or have been killed because of bullying. I just don't understand how the world has come to this. I find it so sad that children can be so cruel to one another - but I guess it's always been this way. Maybe it's just the fact that social media has made it much easier for these kids to bully each other in a large-scale format, or maybe the morals of our society are going down the drain. Either way it's what I worry about the most. We work so hard to get JD "mainstreamed" - but at the same time I know that he'll always be the "quirky" kid in class and he'll probably be made fun of. All I can do as a parent is try to do educate others about autism, including other children, because as the diagnosis rates continue to rise I know that JD won't be the only one facing this problem.

FAQ #3 - What's it like to have a child with autism?

I know people often wonder what it's like to have a kid on the autism spectrum. You see it on tv sitcoms, on Oprah and in the news - the child with autism who doesn't talk, doesn't interact, doesn't make eye contact, etc. But when you experience it first-hand you realize that every child with autism is unique. I can't vouch for anyone but myself when answering this question, but here's my best shot...

Having a child with autism is like living on an emotional roller coaster. Some days I feel like we're on top of the world - that we're making huge strides and that anything is possible. Other days I feel conquered and that we have so far to go. But most of the time we're somewhere in the middle just coasting along at a steady pace.

Having a child with autism is filled with frustrations and joy, just like with any other child, but magnified by 100. Daily life isn't easy anymore, just transitioning from one task to the next can cause a major meltdown. But you just learn how to roll with the punches (sometimes literally!) because in the next moment you might experience a major success. Bedtime is always a great example of this. Every night JD loves to play in the bathtub, but when it comes time to get out he gets really upset. Normally we end up having to pick him up out of the tub, wrap him in a towel and let him fall to the ground crying. Eventually he gets up and makes his way to the bedroom knowing that he's not going to win. This can be really frustrating when you do it day-in and day-out, but we know that what happens next is worth the fight...

After struggling to get his clothes on for bed as he cries "clothes on!" we close the door and read books and sing. He's in pure heaven. He'll belt out song after song in his cute little voice and we cheer him on because we know a year ago that wasn't possible. He's come so far. Within 30 minutes we've taken the roller coaster ride all the way around.

With the ups and downs, loops and spins, sometimes I feel like I can't take another day, but then JD will come up to me and say, "quaw - wannahug?" and I'm ready for another ride. :)

How Did You Know JD Had Autism?

I've had a lot of people ask how I knew that JD had autism, especially since he was diagnosed at such a young age. I think a lot of it had to do with intuition, but there were a few big things that stood out. I didn't know at the time that it was necessarily autism, but looking back I can see it clearly. I remember starting getting a feeling when JD was around 16 months old that something wasn't right, but to tell the truth I was midway through my third pregnancy at the time and it was all I could do just to make it through the day with two little ones so I didn't act on it. When JD was diagnosed it was based on a few main problems:

• Communication delay - he could only say five words by the time he was two. He didn't gesture either. He wouldn't point to something he wanted or bring you something or even hold his arms up when he wanted to be picked up.


• He lacked something called joint attention, meaning that if you pointed at something and said JD look! He would look at my finger, not the object I was pointing to. He couldn't connect that I wanted him to look at something in the distance.


• He couldn't understand simple directions, so if I said JD bring me the book he had no idea what I was talking about.


• He didn't really play, he stimmed. At the time I didn't know what stimming was, but I knew when he played with his toys (normally trains) they always had to be at eye level and he would bring his face real close and stare at the wheels while he moved them back and forth. It wasn't imaginary play.


• He had HUGE tantrums (and still does) when things don't go as planned or he can't communicate something he wants or needs. I'm not talking the normal whining/crying tantrum, I'm talking full body throw yourself on the floor screaming hitting biting hysterics that would go on for 20 minutes or until we figured out what was wrong.


• He never really interacted with anyone in the family and was much happier playing with his trains. He never liked to cuddle and if you held him he always had to be held facing out. Loud noises really bothered him and he would be totally overwhelmed if we did anything in crowds.


• He didn't walk until he was 20 months old and even then he preferred to crawl.

My advice for parents is if you ever have that feeling that something just "isn't right" - bring it up to your doctor and don't let them brush you off. What I've learned is that they may be experts in pediatric medicine, but I'm an expert on my son.

FAQ #1 - "Do you think immunizations cause autism?"

This is normally the first question any parent asks me when I tell them that my son has autism. I think anyone who has had a child in the last five or so years has spent the first two years of their life worrying about autism kicking in after a routine immunization. This is widely because of a study that was published that said that mercury in the immunizations caused autism. Also around that time Jenny McCarthy's son was diagnosed with autism and she did a very public campaign around the subject of immunizations. My answer is honestly I don't know. I've gone back and forth about it. I know that the CDC has stated that autism does not have a direct link with immunizations; however I'm not sure how much I believe them since stating anything other than that would cause a MASSIVE uproar in the healthcare system. However, I do know from a personal standpoint that JD never experienced any bad reactions after a shot. Many parents with children on the spectrum say that their children were developing normally until a certain age (usually two) and after getting a certain vaccine they began to withdrawal from the world. We never experienced that - from what I remember JD was never on target developmentally. One thing I do question is the use of "cocktail" vaccinations - That's when they put multiple vaccinations into one shot, so if they have to get four vaccines that day, they'll use two shots. Both JD and Ashley had their shots this way until they were two - JD has autism, Ashley does not. However, when we moved and found a new pediatrician, he explained to us that he did not feel comfortable doing shots this way. So with our youngest child we have done each vaccination separately and spread them a few weeks apart. I will say that this makes me feel better, especially since we have one child on the spectrum. I'm a big believer in traditional medicine. I have a doctor who has never steered me wrong. I'm not saying that doctors cannot make mistakes, but I think we have to trust that they are experts in their field. I truly believe that our pediatrician would never do anything to my children if they felt there could even be a remote chance of it causing autism. It's a subject of so much debate and I think there are strong arguments on both sides, but for me I guess I lean toward no - I don't think the shots were the deciding factor on JD's autism. I think it's a genetic disorder that he's had since birth. Only time will tell, I have no doubt that they will continue researching this until long after I'm gone. But I can't live my life wondering so I choose to focus on the here and now.

You Made It!!!!!

I’m so excited you’re here!

April is Autism Awareness month and to celebrate the Graham family sent out Autism Speaks lapel pins to our friends and family all across the country. We want to do our part to raise awareness on behalf of our son JD. We really appreciate you taking the time to stop by! If this is your first time here then you’ll quickly see that this isn’t the normal, “my son has autism and I’m so sad about it” blog – this is a place where we celebrate our son’s accomplishments and share what it’s like to have a child on the autism spectrum.

Most of you know that JD was diagnosed with autism almost exactly a year ago. I won’t lie and say that the road has been easy – we’ve had our ups and downs – but we know that the best thing we can do is stay positive and focus on the future instead of worrying about the past.

Since his diagnosis, JD has spent more than 800 hours in therapy, and that doesn’t even include the time we’ve spent at home with him doing 1:1 work! He’s made AMAZING progress and we’re so proud of him. A year ago he was a frustrated little guy, unable to communicate his needs and overwhelmed by the world around him. Now he’s happy, engaged and eager to learn.

You may ask what YOU can do to support families with autism – that’s an easy! Sport your pin during the month of April… you’ll be surprised how many people will stop you to talk about their connection with autism. Nowadays it seems like everyone has been touched in some way by this disorder.

On my blog this month I’ll be covering topics that always seem to come up in conversation. Here’s a few on my list…How did you know your son had autism? Do you feel like it was caused by immunizations? What’s the difference between autism and aspergers or is it the same thing? If you have any questions that you’d like answered, I’d love to hear from you! Just email me at linzuf99@gmail.com. I hope you enjoy reading my blog, it’s been a wonderful way to share our journey with the people that support us each day!

Here's a picture of the cards and pins we sent out! And a picture of me in my blue shirt on April 1st - Light it up Blue Day!

What a Difference a Year Can Make!

Today was an amazing day! We celebrated JD's 3rd birthday with family and friends at a bounce house center in South Orlando called Puzzles. I was really excited to host it there because Puzzles was founded by two members of the Autism Society of Greater Orlando and not only is it a great place to take your kids to play, but it's also a place where they teach employment and independent living skills to young adults with developmental disabilities. What a great place to host JD's party!

I was a little nervous going in. JD can get overwhelmed pretty easily and this place is packed with bounce houses and kids running all over the place. But HE DID GREAT! It's amazing to see how far he's come in a year! It's great to see him jump right in and play with his friends, and do all the normal birthday things that other kids his age do.

Last year when we celebrated his 2nd birthday it was right before he was diagnosed. I look back now at the pictures and I can see how hard that day was for him. He looks stressed and overwhelmed and spent most of the time playing by himself with his cars while the other kids ran around having fun. Today it was totally opposite - he had a great time and was interacting with his friends the entire time.

I'm SO proud of him and SO happy for him! It was the best Spongebob birthday a little boy could have...I guess Spongebob is growing on me :)

Happy Birthday JD!

Three years ago today JD came into this world. He has taught me more about unconditional love then I ever knew possible. Happy Birthday handsome! There's nothing more wonderful than being your mommy :)

“It is not until you become a mother that your judgment slowly turns to compassion and understanding.”

Dinosaur World!!!

I never imagined that I would ever love dinosaurs - and up until about six months ago I probably could have only named two - but oh how things have changed! JD has two favorite things in life, Thomas the Tank Engine and Dinosaurs. After two solid years of Thomas the Tank Engine, I was quite happy when he turned his attention to dinos. So needless to say I embrace all things dinosaur and on JD's 3rd birthday Jason and I embarked on an hour long drive to possibly the world's largest dino headquarters - Dinosaur World!

Now, before we got there I was ready for the tackiest of tacky theme parks. It's right off the side of the road on I-4 and you can see a massive T-Rex from the highway. But from the minute we got there I was quite impressed!!! First off, JD LOVED it. He ran into the entrance like he was in heaven. I snapped pictures the whole way through - beaming at my little man and his dino love.

"T-Rex! Brachiosaurus! Triceratops!" he squealed. I just laughed and let out a big sigh of relief because I didn't know if he would love it or be terrified of it. Thank goodness he loved it. Who wouldn't though - when you walk in you immediately enter a shop of a million dinosaur toys... every boy's dream.

We spent the afternoon walking up and down the trail and "hunted" for dinosaurs. JD got to do a "fossil dig" and play in the "boneyard" - it was the most perfect birthday for him. It was quiet, and peaceful and he was in his element. Seeing him light up with joy just makes me smile and remember how far we've come!

Check out the pics from today! https://picasaweb.google.com/linzuf99/JDsBirthday?feat=directlink

Gearing Up for Autism Awareness Month!

I was driving to work the other day and remembered that April is Autism Awareness Month! Since I always love a good project I went straight into creative mode thinking about what we could do in support of JD. I'm really excited about my idea...the Graham family is celebrating by mailing out Autism Speaks lapel pins to our friends and family! We're so lucky to have such amazing people in our lives and I hope everyone likes their gift! Now I just have to get them in the mail by the last week of March... anyone want to address a few hundred envelopes? :)

Patience is a Virtue, but Not a Virgo!

"Be patient enough to live one day at a time, letting yesterday go and leaving tomorrow until it arrives."

If there's one thing I have a hard time doing it's letting go and just enjoying the moment. I'm a self-professed control freak, with an eye for perfection and no patience... also known as a Virgo. But having a child with special needs has taught me that life is more than just regretting the past or worrying about future, it's about appreciating the now. Taking each day for what it's worth, loving your family and friends and letting them know how much you care.

For me that's easier said than done... I have to remind myself each day that things happen for a reason and to have patience, patience, patience. It's impossible to know what the future holds so stop trying to control it. :)

We've Made it 1 Year!

I can't believe a year ago this month we were sitting in the pediatrician's office hearing Dr. Chabon tell us that JD was "showing signs of autism." It seems surreal now, almost like a dream. It's strange because looking back, knowing what we know now, I kind of wonder how I didn't see it earlier. But that's not important - what IS important is how far we've come in a year! This is such a great time to celebrate JD's accomplishments because sometimes we forget the little "wins" he's made each day, week and month. So as a proud mommy I'm happy to list the following accomplishments - if there's only one blog posting you read, then make this the one!...

Language - When JD was diagnosed at 2, he had five words - chugga, choo choo, go, five and whee!! When we started speech therapy I could not even imagine a day when he would make a "request" - like saying the word cup when he was thirsty, or down when he wanted out of his high chair. At that point in time it seemed like no matter what we did, he would not use his words. I'm SO happy to say that he has a huge vocabulary now (so many that I no longer count!) and that he's stringing short sentences together! Now most of them have to be prompted (we have to say, "JD say I want down please) - but there are a lot of times that he's saying things without being prompted! We're working on pronouns now and verbs with -ing endings! HUGE PROGRESS!!!!

Behavior - This is a tricky one because I think it directly correlates to language. The better he can communicate the less tantrums he has. However, we do have many moments when he goes berserk, but he's still a toddler! What I'm happy about is the length of time he's patient BEFORE throwing a tantrum. For instance, when JD was first diagnosed he would throw a fit on the drop of a dime if he wanted something. He didn't understand "hold on" or "just a minute" - everything was URGENT. Now if he asks for something he'll wait patiently, or at least a few minutes, before getting frustrated. This gives me time to diffuse a situation before a screaming fit occurs!

Attention - WOW have we made progress here! When we started therapy a year ago JD couldn't focus on doing a task for more than a minute, and that's if we were lucky. Now he can sit at a table and work on a project for up to 30 minutes!!!!!!!!! He loves puzzles and books and crafts. I think his table time actually keeps him calm - it's very structured time for him.

Motor skills - Here's one area that JD was not too far behind, his gross motor skills were pretty good, but he's been working so hard at the fine motor skills. Holding a crayon, using a fork and spoon, counting his fingers, pointing to objects with the correct finger - they're all things that he's really had to work on over the past year. He's also learned how to jump with two feet off the ground and go up and down stairs with little assistance!

Listening - Another big area of progress! A year ago JD hardly moved if you called his name, it was like he didn't hear you. And if you did get his attention and asked him to do a simple request he had no clue what you were talking about. He's come a long way since then! If you ask him to bring you something he'll do it, at least most of the time! He's following directions better at school and I'm always happy when he comes home with a smiley face on his report!

Playing - Ahhh - probably our hardest area. JD's favorite place to play is at his little coffee table in our family room. It's like his little world. We've spent a lot of time trying to move him away from the table, to play "appropriately" as they call it, and just recently he started doing that. I'm so happy to watch him play with his trains on the floor now! That was a big step for him. We're also working on helping him in social situations. It's not easy for him to play with other kids his age, or younger. He's usually too rough or he doesn't understand normal social "cues" for instance - when he gets in someone's face or they want to stop playing - these are all things that he doesn't pick up on. But he's making progress but I can see that this will be a lifelong struggle for him. It just means that the friends he plays with are just that special, because they understand that he needs a little extra help in that department!

There's so much more that I could go on and on, but these are just the top areas. I'm SO excited to see what he accomplishes in the year ahead of him! We're looking forward to potty training, transitioning him into a "big boy's bed" and spending time on more social activities. For his third birthday Jason and I are taking him to Disney World for the first time - something we would have never tried in the past because of all the potential meltdowns!

My heart goes out to all the people that have helped us get where we are today. His pediatrician who saw the early signs, his specialist who was there when we cried at the diagnosis. All Therapy Connection - our home away from home - and everyone there. His prek teacher, April, his Occupational therapist, Tonina, his Speech therapists, Holly and Yvonne... What an amazing group of people they have there. Not to mention the other therapists and assistants that work with him there each week in group activities. His behavior therapist, Rachel, and her little boy who help him learn to play, our family who has helped us financially and emotionally, our friends who have stood by us and helped us when we were down, our neighbors that go out of their way to interact with JD and involve him in the little things, our facebook friends that read our posts and give us supportive words - all of you have made this journey a little easier! But there are two more people who have made a HUGE contribution and mean so much to us - these two people spend almost everyday with our children and go above and beyond to provide them with the love and support they need while Jason and I are at work - Katie Voss and Kati Hanes - by far the two most wonderful people I've encountered in my life. They have stepped into our lives and taken on the responsibility of helping to raise a little boy with very special needs. I can't begin to express how much I love them, respect them and admire them because they are like family to us!

The Ups and Downs of Autism

Autism is a funny thing – sometimes it consumes me and it's the only thing I can think about. Other times it’s a faint thought in the back of my mind. It’s always there, but the level of intensity changes from day to day or even month to month. When JD first got diagnosed it was all I could think about. Therapy options, schools, the future – my mind raced with uncertainty and fear for weeks. As we got settled in our “new” life those worries started drifting a bit. It wasn’t all consuming anymore, but still a very big part of my life. Maybe it was acceptance, or just the fact that your world does go one even if you never think it will, but a year later I find myself almost forgetting some days that JD is even different. The everyday stresses caused by his autism are just a normal part of our day. But recently I’ve found myself back in that panic stage. JD is turning three this month and it’s dawning on me that we’re just in the beginning of this long, long road. His therapeutic preschool program is closing (due to lack of enrollment) and now we’re trying to find a new place for him. That has caused me to think about other therapy options, looking through ALL the programs again and trying to find the right fit. Then our youngest, Kyle, is growing at light speed. He’s only 16 months old but is now able to do so many of the things that JD just learned to do. I spend so much time just watching him, wondering how he knows how to wave and point already – like HE’s the abnormal one. I feel like he’s so ahead of the game, when really he’s right on schedule. I just can’t believe that him and JD are so close developmentally, but so far apart in age and size. I feel this guilt for not being as “active” in his therapy and the autism community for the past six months. I think in some small way it’s been easier to put on auto pilot than to worry about it every day. However lately I’m back on – checking out the autism websites, reading autism blogs and looking for ways to get involved (like I have any spare time!). I guess that’s the way it will be all of his life. Learning how to juggle being a mom, a wife, an autism advocate, a career-woman and an individual.

Amazing Accomplishments!

Today was a HUGE day for the Graham Family but unless you know our situation, or have a child with autism, you may have completely overlooked it. This morning we turned on Chugginton, which I knew would be a big hit with JD because he loves trains. Then the small miracles started to unfold...

Immediately he got up and asked for help to get his tunnel and tracks out of the closet. (He used pointing and words for help!)

I took them out with hesitation (because normally he gets so frustrated with them that he ends up in a huge tantrum), but when I gave him the box he AMAZED me. Instead of taking them over to his favorite table in the corner, he placed the box on the floor and started putting the tracks together! In THREE years my child has NEVER played on the floor. It's because it's not at eye-level, which parents of children with autism know they prefer to do to so they can "stim."

If that wasn't exciting enough, I then watched Ashley come and play with him, helping him put together the tracks as he pretended to play with his trains. TEARS started dropping... they've never played together like this before. I sat there and watched, cheering them on, and took pictures like it was the biggest feat in the world. But to us it is - it's a huge step in the right direction. Almost exactly a year ago we found out about JD's autism, and as a family we've worked so hard. Today was one of those days you wait for, that you think will never happen, but amazingly enough they do!

Here are some pictures of our happy day. I wanted to share it with all - it's an inspiration! I am so proud of my little boy, for moments like these come so easy to others but for him it all had to be learned. Communication, pretend play, no "W" sitting, no tantrums... all huge accomplishments!

I love you JD!

A few of his favorite table and the wear and tear it's taken over the last three years.... all morning it sat empty, and that made me smile :-)

A Little Insight from Mommy...

It's almost been a year since we heard the words, "your son is on the autism spectrum" and I can truthfully say it's been a roller coaster ride. My world felt like it was crashing down right before my eyes and as each month went on I realized how much I never thought about all of the people around me who have gone through, or are going through the challenges of having a child with a disability. I guess when things are fine you really never give it a second thought, you think everyone's lives are just like yours. That's why I wanted to give some insight into what it's really like, from my perspective at least. It's not for pity but for understanding, because even though there are many things parents like myself face, we also have so many blessings that our children give us that I would never give up. So here's the good, the bad and the ugly!

THE GOOD:

1. You learn to appreciate the little things... I remember when JD first said the word train I was so excited. We must have worked on it for months. He was so proud of himself, and I was so proud for him.

2. You start realizing that life isn't all about you or your family.... when you are in and out of doctors offices every month you see things that make your heart sink.

3. You have to let the little things go... and for me that meant control. I couldn't control what happened and couldn't change it, but I learned that's ok.

4. You get to become an occupational therapist, a speech therapist, a behavior therapist... the list goes on and on. You have to learn about sensory integration problems, listening therapy, diet alternatives, neuro treatments. And hopefully you can learn it overnight because it becomes your life before you can even blink!

5. Your heart grows, and not just for your child... all of the people you meet that become a part of your life - therapists, friends, other ASD parents, nannies - you love them like they are family.

THE BAD:

1. You blame yourself everyday... If I didn't take this med during pregnancy, or if I spaced out his shots, or caught it earlier... everyone can tell you that it's not your fault and you know this, but you still think in some way it must be.

2. You wonder about the future... what is his life going to be in a month, a year, in 20 years? Will he talk, play sports, get married? Things you always just assumed would happen become things that may not.

3. You become a referee... everyday you deal with tantrums and as JD grows bigger they just become harder to control. You get hit, bit, slapped, clawed, hair pulled. It's like ultimate fighting some days.

3. You wonder how your other children feel... how much do they understand? How do you juggle your attention equally? Are you doing enough for everyone?

4. You compare your child to "neuro-typical" children when you see them out and about. How far behind is he really? I think sometimes I forget and then I'll see another little boy JD's age and it's like a being told he has ASD all over again.

5. You get mad because nothing is easy... you watch other moms who just take their kids everywhere and can do anything and you know that's not your life. Your life is about therapy, schedules, routine and wondering off that path can lead to a very bad day.

THE UGLY:

1. You get mad at God, really mad. I think every parent with a disabled child does this, it's just part of the healing process. But I think God can take it, he knows we need someone to be mad at.

2. You feel like no one understands what you're going through... family included. Unless they have a child on the spectrum, then you know they just don't get it.

3. You wish things were different... this one I hate. I love JD just the way he is, but sometimes, just sometimes, I wish we had an easier life. I wish for him that things were easier because it's not easy to see them have it so hard.

4. You take it out on your spouse... probably because you can only take it out on God for so long. Luckily my husband rolls with the punches and is there for me no matter what.

5. You cry, A LOT... at least in the beginning. It does get easier, but the evaluations never do. No matter what I always cry after an evaluation - it's like getting hit with a bus.

I will say that each day life seems to get a little better. Maybe I worry less or just love more. ;-)