JD's Top 10 Accomplishments in 2011!

When JD was diagnosed almost two years ago, a good friend of mine (my autism mommy mentor if you will) gave me the best piece of advice. She said, “Lindsay – it’s going to be hard. I won’t lie. But you will see JD make amazing progress. It won’t be overnight though, it won’t even be over a month. You’ll only see it over large chunks of time. Wait till you look back at the end of a year, that’s when you’ll see it.” That advice has been the most important insight anyone has given me. I remember when JD started therapy I wanted immediate results. It was so frustrating to go to therapy with him every day and watch him struggle with the same exercises. “Say train” – JD, “say train.” Weeks, months passed, and I’ll be honest, you really start losing hope. But then, just when you least expect it, it clicks. It’s those moments when you remember that it’s not a race, it’s a journey.

As we begin 2012 it’s important to celebrate the successes we made in 2011. When I started this blog in May of 2010 it gave me a place to journal my thoughts. What I didn’t realize at the time was that it would become a timeline of JD’s accomplishments. I’m so thankful for the friends, family (and complete strangers!) who have been there along the way, without you this journey would be a lot more difficult.

So without further ado, here are JD’s Top 10 Accomplishments of 2011:

Whoa Chatterbox!

JD’s talking up a storm. He’s even speaking in sentences. One of my favorites being, “Mommy – Kyle needs to go to time out.” Lol. It might not always make sense – it might include a good amount of JD-jibberish, but he’s communicating. He’s telling us what he wants, what he needs, and sometimes what’s he’s feeling. It was almost two years ago that I VIVIDLY remember JD saying “bubble” – his first real word. We were in behavior therapy, blowing bubbles over and over again. I remember the tears coming down my face from happiness when the word came out of his mouth. I remember spending each day at home with him in his high chair practicing, blowing bubbles all morning. He’s come SO far and I never take any word out of his mouth for granted. Even when he’s asking me the same question 15 times in a row like, “Cow orange chocolate milk Mommy? (which translates into I want more chocolate milk)” But my all-time favorite thing he’s ever said is, “Mommy’s a pretty princess!” Talk about heart-melting.

“Fork Please Mommy”

This may seem like a small one, but it was big in our family. JD started using a fork independently! He’s also able to drink from a cup now without it spilling down the front of his shirt. These are examples of fine motor improvement and they took a long time for him to master. We’re still working on other fine motor activities like holding a crayon the right way and cutting with scissors, but I think he’s going to make big strides in this area in 2012.

Finally, a Blanket

Since JD was born, he never would let me put a blanket on him other than his “lovey” – a little brown blanket with a monkey that he grew out of by the time he was six months old. Every night I would have to dress him from head to toe in warm clothes because I was always afraid he’d be cold while sleeping. And every night I would try to put a blanket in his bed and he would yell, “no blanket!” One day, after he started going to school, his teacher made me bring a big blanket for him to use during nap time. I explained to her that I doubted he would use it, but she could try. Maybe it was luck, or the influence of peers, or just the fact that his teachers are amazing – but in the end JD started using a blanket – finally! He loves his “cars lightening mcqueen” blanket and now at night I don’t have to worry… our next step? Moving from the crib to a big boy bed. We’ll see how that goes.

Going to School

When JD was first diagnosed, he spent countless hours in 1:1 therapy for speech, behavior, fine and gross motor and play. His interactions with other kids was very limited, mainly his siblings and his cousins and few neighborhood kids whose parents understood his developmental problems. That was due to the fact that JD could blow up in a tantrum at any minute and potentially hurt someone by biting, pulling hair or hitting. I can’t say other moms were beating down our door for playdates! When we moved and I went back to work I had to put JD in a regular daycare. He went from a 1:1 therapy situation to 2:15 classroom – there were 15 kids in his class and two teachers. It was really difficult for him, but it was also great for developing his social skills. He had to learn to share, learn to follow directions and learn to participate in groups, all while dealing with the sensory overload of a loud room with lots of kids. After five months of trying to acclimate it became clear it was a too big of a jump for him, so we moved him to the autism prek program in our local public school. Now he’s in a class of 9 kids and 3 teachers and he LOVES it. This morning he even said, “Go see Miss Ehrli – she’s my favorite teacher.” We’ve got a year and a half till he starts kindergarten and I can’t wait to see how far he’s come by then!

ABCs and 1,2,3s

Recently we started using our iPad to help JD on preschool learning skills and it’s been wonderful. When you have a child who can’t really communicate it’s hard to know what they know and understand. When we started playing games with JD on the iPad we realized he knew his letters, number, colors, shapes and much more. It was really exciting to see him point at a hexagon without any help from us! I had no idea he knew all that – but what makes the iPad wonderful are all of the great apps created to encourage learning while making it fun and rewarding. I’m so thankful for this technology and I know we’ll be using it for a long time to come.

Pee Pee on the Potty!

Oh my most hated parent-duty… potty training. I have to admit I’m possibly the worst potty trainer in the world because I hate it so much. But one great thing about JD going to school is that I can’t put it off any longer. The teachers know he’s ready and he’s doing an amazing job keeping dry all day long! Again, the iPad has been a huge help in this area – we found it as a great reinforcement (thanks to Miss Katie who thought of the idea!). If he sits on the potty he gets to listen to a Thomas the Tank Engine book and to turn the page he has to push the pee pee out. It’s still a work in progress, but I’m so impressed that we’ve come this far!

Playground Mania

When JD started occupational therapy I remember three things he hated the most: climbing, sliding and swinging. He was terrified of them all. We had to work for months to get him to climb up the rungs of a ladder and sit down by himself to go down a slide. Last night our family went to dinner at a one of our favorite places – Joe’s Crab Shack. It’s not that we like the food (I don’t even eat seafood!) but they have this AMAZING outside playground designed to look like a pirate ship. My husband and I can sit and watch all three kids play while we eat in peace. It’s worth every penny. But as I watched JD play last night I sat in amazement how quickly he could run up the stairs, across the jungle gym and down slide down the slide. It’s so easy for him now. In those moments I realize that all of the hard work pays off. We might have to push him each step of the way, but it’s so worth it in the end.

Friends

We’re coming up on JD’s 4^th birthday and this year I’m really excited because we’ll actually has friends to invite! Usually it’s just my friends and their kids, plus his sister and brother, but now that he’s in school he’s made a few friends of his own. One of my best friends has two little boys – a 6 year old and 4 year old. I love taking the kids over to her house to play because he’s just a typical kids while he’s there. They don’t understand (or even notice) his autism and he follows them around like they’re the coolest guys in the world. I know as he gets older it will be more difficult for him to make real friends because of his social issues, but right now I love that he’s just a kid.

Haircuts

If you look back at old posts, you’ll see pictures where JD’s hair was crazy long. He HATED getting his hair cut. I remember we used to have to put him in a highchair, Jason would hold down his arms and I would clip away as fast as I could while he’d cry so hard his nose would bleed. It was awful, and we only did it when absolutely necessary. His therapists recommended that we start doing it more often so he could get used to it and realize it wasn’t going to hurt him and then we started to do short “mini cuts” where he’d get a trim every week. He still doesn’t like getting a haircut, or his nails trimmed, but he does it without a fight. We’re even using a buzz clipper now, which is a huge accomplishment. I can’t imagine how scary that noise and feeling is. Even though sometimes I miss his long waves, I love his little buzz cuts. He looks like such a big boy now.

SeaWorld

One of the best things we did last year with JD was taking him to SeaWorld. It’s 15 minutes from our house, so you’d think we’d be there every weekend, but taking three kids to a huge theme park with large crowds, lines, and loud noises was not our idea of a relaxing weekend. In November Jason’s brother and his wife came into a town and we decided to take the kids to the park. Four adults, five kids and two cars (in case anyone needed to leave early). JD did GREAT! He loved it – he even loved the shows. It was a great day for our family and the kids had a blast. We’re even thinking about getting annual passes just so we can “practice” going so we can build up to taking a trip to Disney!

So what’s in store for 2012?

I am so excited for this year because I know JD is going to continue growing in his development. I can’t wait to see what I’ll be writing about next January. I’m really glad that I started this blog when he was two, because day-by-day it all becomes a blur. But this gives me a way to look back and remember how far we’ve come. I’m just thankful to have so many wonderful people in our lives that encourage him and accept him for the amazing little guy he is!

Potty Training... UGH!

I really dislike potty training. If it was up to me, my kids would probably be in diapers for a long, long time. But potty training a child with autism takes it to a whole new level. JD has been "potty training" for the past 8 months. He would probably be trained by now if it wasn't for me and Jason not following through. It's just such a pain to change routines around our house. With three kids, ages 5 and under, we live and die by the routine. And JD wouldn't have it any other way. He LOVES routine. Any changes to that routine ROCKS his world. So now, as JD goes to school, he's potty trained for the teachers because it's part of their routine. But when he gets home it's like a free-for-all. He screams, hits, pinches, bites - any time we try to get him to go to the potty. It's like torture for him AND us. And then I feel so bad making him go. I know it's just the change in the routine and he knows mommy and daddy will let him get away with not sticking to it - so in 2012 my goal is to STICK with it at home. Maybe if I just did the math on how much I'd save on diapers and wipes per month would motivate me!

JD's a Panther Cub

Today was another big day at the Graham household. JD started the autism prek program at Dr. Phillips High School... yes, you heard it right - high school. It's a brand new pilot program in Orange County Public Schools (OCPS) and we happened to be registering him for prek services right when it opened so we got in. To be honest, I wasn't very happy about the idea at ALL when they told me he'd be going there. The thought of my 3-year-old little boy at a high school did not make me feel very comfortable. My mom-guard flew up and I went into immediate fight mode... arguing why it would ever be a good idea for preschoolers to co-mingle with teenagers! However, the program had something that no other school had - something that made it worth a shot - the Exceptional Ed teacher of the year for the state of Florida in 2010. Hmmm... I figured I should put my guard down and listen as much as I didn't want to.

When we moved to Dr. Phillips about six months ago, we went ahead and found a daycare where JD could mainstream. He was in a normal class, but we had a 1:1 shadow with him during the "structured" hours of 8-12. He did really well there, and I was amazed at how much he learned to cope with his sensory issues (there were 16 kids in his class!) as well as trying to socially fit in. There were only two problems... the first was that he wasn't up to speed with the educational tasks for his age - drawing, cutting, painting, etc. and needed more support in that area. The second was that it was completely unrealistic to keep paying for him to be in full-time daycare with a 1:1 aide. So we started looking for options back in November. 

JD has been eligible for a public school prek program since turned three last March, however we've always chosen to keep him in a private school because I like him with "neurotypical" kids. I found that inclusion (being around other kids his age) actually seemed to help him develop more than normal therapy. However, behaviorally he has some issues and those can't be ignored. Jason and I met with OCPS and learned more about the program. There are only 9 kids total in the classroom, and there are 3 teachers. You can't beat that ratio. He'll also get speech therapy there each week. The best part is that it's free. 

So today he started - he's now an official DPHS Panther "Cub" - and from what his teacher said, he did really well. I was really nervous. I hate changing his schedule and I felt horrible leaving him there with strangers, but I know he'll be just fine. It was a big day for him, and as you can see from the pictures below, he was pretty stressed out. I picked him up at 2:45, brought him home and he laid on the couch watching tv. 

I'm really proud of my little guy. I know this isn't easy for him at all, but he's one tough cookie. He even met a little friend named CJ who he played with most of the day. I look at the pictures from today and I can't believe how big he is now... we started this journey almost two years ago and it's been a road filled with twists and turns and more twists. I can only hope that we'll eventually find a path that's a little straighter. 

Nomination for Sainthood

I'm excited to write this blog tonight because it's WAY overdue... I'm talking a few YEARS overdue, so it's long, but a must-read! I have a nomination for Sainthood and I've filled out the appropriate questionnaire below. Now I just need to mail it to the Pope to see what he can do! 

Name of Saint Nominee: My nominee goes by many names, most formally Jason Graham, but commonly referred to as Boo, Boo-Boo, Daddy and Jase. Only in rare instances do I actually call him Jason aloud, usually only in the case of a roach or spider being in the near vicinity or one of the children driving me to my last nerve.  

Why Do you Feel this Nominee Should be Named a Saint? Hmm.. where to begin? Let's see:

1. First and foremost he's spent the last 10+ years dealing with my insanity. When we met I was 20 years old, cute, blonde, and drove a beautiful blue Beemer. Our only care in the world was what tailgating party to hang out at before the Gator games. Oh how life has changed! After having three kids (back-to-back-to-back) and managing two full-time careers, our life now revolves around being a constant referee, maid, cook and chauffeur among the other million things we do each week. I can't say that I've always been the nicest, sweetest, most loving wife over the years (and it's a good thing that I can blame a lot of those years on pregnancy hormones!!) but Jason has always been there, supporting me and our family. In my most grumpiest of moments he'll say to me, "When someone is grumpy you love them even more because that's when they need love the most." Wow - If only everyone could live by that saying this world would be a better place.

2. Jason's level of patience is way beyond mine. This weekend was a true testament to that. We decided to have our first official sleepover at our house. My two nephews came over yesterday afternoon and we had five kids, ages six and under. Now - for Virgo like me who loves order, organization, cleanliness and calm, I knew I was stepping into fire. However, I wanted to make this New Years special and the kids loved every minute of it. We took all five kids to the movies, loaded them up with candy and popcorn. Brought them home and ate pizza, went outside and bounced on the bounce house and then stayed up late and watched the Smurfs. Then, after getting approximately 4 hours of sleep, they were up at the crack of dawn ready to roar and Jason loaded them into the van and got doughnuts and we had a second round of bounce house jumping. Not ONE single time did Jason get mad, raise his voice, or even look annoyed. If anything he was loving it as much as they were. It's those moments when I love him the most.

3. I hate cooking (he loves it) and I hate getting up early (he's a morning person!) and this really works in my favor. Every morning (no joke when I say every morning), Jason gets all three kids up and out of bed and ready for the day. Now, I realize that makes me sound like the worst mother in the world and I really shouldn't admit it publicly, but it's true. We've got the schedule down pat, and while I'm getting dressed for work, he gets the kids ready for school and out the door we go! I get that extra 30 minutes of sleep and to me that means the world. I'm thankful that's he's a morning person. He also picks up the kids from school every afternoon at 5, gets them home and feeds them dinner. By the time I get home from work it's 6 at the earliest and it's so nice to know that he's got it all under control. I have to give some props here to my father-in-law who also was the chef in their family when Jason was little, so to Jason it's just a normal dad thing to do!

4. He's OK with sharing me!... oh wait, that sounds bad! I mean he's OK with me spending as much time as I need spending time with my mom, my sister and my friends. When I turned 30 last year I went through a mini "life crisis" and was really looking for that freedom I had back when I was 20. It wasn't easy for him to watch me go out with my friends every weekend, but he knew it was what I needed, and I'm thankful for that. It took me a few months, but I came back around to realize that those days of partying it up were totally overrated and what I really wanted was to be at home with my family. But I still have my nightly phone calls with my mom and Katie and those can easily extend into a few hours! Even better than him sharing me, is him offering to be there for my friends. He cares about them as much as I do and would do anything in the world for any of them!

5. He's amazing with JD. Ever since JD was diagnosed almost two years ago I've heard the same thing over and over again... "You're so lucky that your husband is so involved. We hardly ever see dads come to _____ (therapy, IEP meetings, doctor's appointments, parent/teacher meetings, etc)." That one always shocks me because Jason has always been there for EVERYTHING since day one of all of their lives and I can't imagine it being any other way. But it does remind me that having a husband/dad that is so engaged is not always the norm, and I am really fortunate to have a true partner in my life because without him I would be in deep, deep water. He's spend countless hours working with JD, reading to JD, rough-housing with JD, learning about JD's needs and providing that loving support. Everyone always tells me that God gave me JD because they knew I'd be the best mom to raise him, but in all reality, it's because he has the best parents - it's me AND Jason that do it together.

6. Finally, he supports me in all my dreams. I spend four years at home with the kids after they were born and Jason knew that I really wanted to go back to work - I NEEDED to go back to work. That wasn't easy for him because it changed his whole life. I had been home to take care of everything and he was able to leave as early and come home as late as he needed. But he supported me, believed in me and was there each step of the way as I cried from the mom guilt of putting my kids in daycare. I couldn't have done it without him!

I could go on with more, but you get the idea! I'm sure you'll agree that Jason/Jase/Daddy/Boo/Boo-Boo deserves the name of St. Jason. But just in case you need more supporting data, here are some pictures to complete my submission!  I have about a million more but I'm not sure if my blog would hold them all!

Love you boo! You mean the world to me! :)

 

 

"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!...