Letting Go of the Life We Have Planned

I saw this quote today on Pintrest and it really rang true to me. This is probably one of the hardest things I deal with daily, but even more so on the weekends. I'll be really truthful and admit that sometimes I'm really envious of families with "normal" kids. When we go out as a family - which is not very often - it's the most stressful, and sometimes dreadful experience. I can't really explain in words how difficult it is, but my anxiety skyrockets and my mood can plummet. I'm on constant alert... is JD going to scream? throw something? hurt someone? hit someone? knock something over? run into traffic? eat anything? fall onto the floor in a tantrum? Then add another two little ones of top of that and it's exhausting. We always end up loading the kids in the car wondering why we even made an attempt. The reason is because we want to have a "normal" life. One where we can go out as a family and just enjoy being together.I can honestly say it's hard to let go of that dream.

Today I came upon an old article called, "Autism Moms Have Stress Similar to Combat Soldiers" and while I've never been in any combat situation, I can see the similarities. Like soldiers, an autism parent never lets their guard down. You're always vigilant, always worrying, always thinking about the next step or the next "battle" so to speak. You're constantly fighting for your child - whether it's a school, a doctor, the insurance company or even family members - you're job is to be their advocate. I guess that's why they call us "Autism Warrior Moms."

But sometimes I don't want to be a warrior anymore. I just want to relax. I want to be able to spend time with my family and actually ENJOY it. I just don't know of that will ever happen. Everyone tells me it will get easier, but there are days when I wonder how we'll make it that far. The fighting, the hitting, the biting, the screaming,the crying, the lack of communication, the sensory issues - it's all too much. The weekends are really hard and it drives me crazy that by noon on Saturday I'm looking forward to Monday morning.

I love my kids and my life, it's just not what I envisioned. I never thought I'd be 30 years old and fighting what seems to be a never-ending battle. I never thought I'd have to worry about ASD, SPD, IEPs and BIPs (that's Autism Spectrum Disorder, Sensory Processing Disorder, Individual Education Plans and Behavior Intervention Plans for the non-autism parents reading this out there!).

Before I drown in self-pitty, I try to remember to remember that I have it easy compared to so many others. I have three healthy children, a husband who loves and supports me, three wonderful best friends, my family nearby and a career that I love with an amazing company. At the end of the day I don't think I'd change a thing - and that's what keeps me going - well that and Hershey Bars. :-)

Love is Patient, Love is Kind...

Today at church we reviewed the well-know verse from Corinthians 13: "Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no records of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always preserves. Love never fails." As my husband and I sat there and listened, I could only think of one thing - as a mom, how patient and kind am I to my children? Am I really doing everything I can to show them God's love in all that I do? The answer is no - I get frustrated, angry, annoyed, irritated and grumpy. It's not something I like to admit, but it's true.

Patience and kindness isn't about letting your kids run all over you - it's about loving them even in the hardest of moments. It's about treating them as God would treat his own children. It's about staying calm and being a good example. I'm the first to say that I'm not great at any of those things, having three kids - 5, 3.5 and 2 - my life is filled with chaos. When you've spent hours listening to crying, whining and fighting, it's not easy to keep your cool. I'm heard the words, "Would you just STOP?!" come out of my mouth so many times I've lost count. Does that make me a bad parent? No - I'm sure all parents of young children have been in the same boat. Does it make me want to be a better parent? Yes. I want to be the best example of love, kindness and patience that my children have. If they're not learning it at home then how can I expect them to know how to treat others including their own siblings?

Having a child with special needs is such a double-edged sword. JD has made me a better person. I've had to learn to have so much more patience, learn to keep my cool even during the most difficult tantrums, and learn to put myself in the shoes of others before making any sort of judgement. But having a child with special needs also brings a lot more stress into your life. The day-after-day work involved can bring even the most patient person to their wit's end. 

Reading the Corinthians verse today reminded me that love is so much more than a feeling - it's an action. I might not always be happy with those that I love, but if I respond with preserving kindness and patience then I'm doing the best I can do. Positive reinforcement is an amazing thing, the hardest part is putting it into action. 

Open Your Eyes - Autism is All Around

Sometimes I just want to scream and this is one of those moments. I just saw a clip on NBC Nightly News saying that changes may be made to the criteria that defines autism. In essence making it more difficult for children to receive an autism diagnosis. It's moments like these when my stomach sinks, tears roll down my cheeks and my autism warrior mom spirit comes out. This sort of news just makes me MAD. 

I wish the government would stop pretending that the autism epidemic is all in our heads. Open your eyes - autism is all around us! There isn't a week that goes by when I don't see an autism sticker on a car, or an autism license plate, or a child in a public place showing all the classical signs of autism. Wake up people - autism is here and it's here to STAY. Sure, making the criteria more difficult will make the numbers sound better (higher criteria = less kids on the spectrum) but that only means there will be children all over our country with undiagnosed autism. The reason? So our wonderful insurance companies don't have to pay for therapy. (Not that many of them do anyway! That's only if you literally spend your days fighting denied claims and educating every insurance provider about insurance mandates for autism.)

We preach early diagnosis and early intervention and now they want to make it harder for these children to get the help they need? One day these autistic children will become autistic ADULTS. The price for therapy as children does not even compare to the price of 24 hour live-in facilities. If we can help these children become more independent and give them the tools they need now, why wouldn't we? 

The autism epidemic is real. I'm the parent that never thought it would happen to me. I'm the parent who read the Jenny McCarthy books and thought that my son only had autism if he shut down completely... that's not the only type of autism. Autism is a SPECTRUM disorder. Autism is different for each person. Autism is real - just come live one day in my shoes, come meet my son and tell me that this is all in my head. 

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! :)