My Child Has A British Accent?

So much has happened over the last few months. Everything has been the whirlwind! The hubs has been back and forth on deployments and TDY's. I think he's been gone more than he's been home in the last few months. It's the first time L has really noticed or could verbalize that daddy isn't here.  I just keep telling him daddy is at work and will be home in lots of sleeps.  I think he's starting to understand but who knows. This is the kid who is now repeating everything and starting to talk...with a British accent.  The British  accent is cool and everything, but um...we live in America, in the south. I always expected them to have a but of a southern drawl, but never a British accent.  Thanks Peppa Pig! More power to you little man! We tried to Skype with the hubs and L wanted nothing to do with it.  G loves skyping, not necessarily to see his daddy, but to see himself and make funny faces!

The boys are doing so well in school! We are so grateful for the Prek EC program they are in.  They still have a ways to go, but have made so much progress. Like I said, L is talking up a storm, he will normally say the same thing over and over until you repeat it too.  It can get frustrating at times, but I'm still in that "OMG! MY BABY IS TALKING!" phase!  G is still pretty much nonverbal, BUT has started saying a few words! He has this tiny little voice and a little lisp when he speaks and said in his tiny G voice, "dinosaur, roar!' I just about fell over as it was the cutest thing I've ever heard. He also said "more" because he wanted more yogurt and I wouldn't give it to him unless he used a word, pecs card or pointing.  He finally got frustrated enough to yell out "more!" There you go kid, I knew you had it in you! He's even been trying to master eating with a spoon.  He still prefers to use his fingers, but I get it, eating with your hands is so much more fun! I just like to call it sensory play. L is doing pretty well using a spoon, but is going through that "YUCK" phase lately where even his preferred foods are "YUCK!" The kid turned down a cookie!  Who does that?  I sure haven't met a cookie I could turn down.  Well, that's not true. If it has nuts, I say no.  I'd rather not die because of my love of cookies.

I took the boys to a train show the other weekend.  L had a bit of a rough time with all of the noise and commotion, but G was in heaven!  I think the only thing that boys loves more then trains is eating goldfish. He loved seeing all the trains and going on a little Thomas The Train ride.  L thought it was for the birds and was more excited that he got to drink pink, which was a strawberry banana smoothie.

Next month they both need surgery...again. What else is new, right?  On to our third set of tubes.  They're getting T-Tubes this time which are supposed to last a few years.  Hopefully they do the trick. The poor kids are miserable. L has been hitting himself in the head more then usual because his ears are really bothering him.  He also has a lot of scar tissue in his ears which the need to work on. Even one of the dogs has an ear infection right now!  Too bad they don't make tubes for dogs.  Trust me, I asked our vet!

As for me, I still always feel like everything is chaos. By the time I get the boys from school, take them to therapy, and get them home, feed them dinner, get them in the tub, get everyone in bed I'm too tired to do much of anything.  I have started jogging again, which I am loving! The dogs are loving it too. It helps me clear my head. I'm still in this odd place of not feeling like our family really first in anywhere.  It's like we're stuck between this typical world and the special needs world. Sometimes I forget just how much we're untypical (is that even a word?) until we go somewhere with our typical friends.  After a few minutes, we're like "Oh right, why did we attempt to do this?" It normally ends with either the boys or I crying and we hightail out. The hubs and I would love to move our family to the coast. We found an amazing quaint little town that would be perfect for us, and their schools have a great EC program, but then the hubs would need a job. Details, details. I'm pretty sure we'll be here for a long, long time, but a girl can dream.

Just Another Day in....Paraidse?

Today started out like any other morning.  My alarm going off in my ear at 5am.  Why 5am?  That way I can shower, put my face on and get dressed before the twinadoes demand breakfast.  On some morning's G wakes me up well before 5am, ready to start his day.

We do our usual, change diapers, get them dressed, feed them breakfast, break up some pre-school fights which are normally over something life shattering like someone has the wrong cup or L stole something from G, administer medications, put everyone's shoes on, and we're out the door.  At least we try to be.  On a normal day, first I bring L to the car, then G to the car, then have to run back in to grab backpacks (an essential folder holder for any preschooler)and grab my coffee, chugging it on the way to school all while trying not to spill it down the front of my shirt, while L is in the back yelling "OH NO!" because he intentionally took his shoes off and then cries because he doesn't have his shoes on, while G is either shrieking, flapping, crying or eating his fingers.

Although it takes us 15 minutes to get everyone in the car, we get to school in 8 minutes, 9 if the older woman with bright white hair is walking her bazillion dogs (I think they are really walking her), so we have to stop so we don't hit her or one of the bazillion dogs. We finally get to school, thank goodness the handicap spot it open (I'm always amazed at how many non handicapped people park there...in a school...for kids with disabilities.), which also happens to be the furthest spot from the doors (still makes me confused every morning). I get L out of the car, he fights with me because he wants to take the entire contents of the car into school with him and I tell him he can't so he cries.  He gets over it and gets out of the car.  Then he wants me to carry him, so I carry him to the other side of the car to get G out.  G is crying, like he does every morning when we make the turn into school, I try getting him out of the car while being hit. kicked and yelled at.  Finally get him out, all of us walk towards the school, G throws himself on the ground and refuses to walk, all while trying to lick the car in front of him (gross!).  Pick him up and carry said child, other child notices and wants to be carried too.  Finally make it to the doors while carrying about 40 pounds in each arm, plus 2 backpaks while they're both flailing like fish out of water. 

We finally make it in the building.  L runs to his classroom, G throws himself on the ground. It takes the Principle, myself and one of the TA's to get him to go into the classroom.  Once in the classroom, L runs in circles, G throws himself back on the floor while being bribed to wash his hands so he can eat his banana.  Put his harness vest on him, wash his hands, seat belt him into special chair, eats banana in 2.3 seconds and then reads a book.  I end up sweating my make off, and my good hair day turns into the drowned rat look, eyeliner smudged on my face and ready for a nap.  I start what should be my 8 minutes drive home, but realize I have to run errands, looking like I just got out of a sauna when it's really only 40 degrees out.  Once I see our neighborhood and our cute house sitting on the corner, I feel like the gates of heaven just opened and I run in wanting to collapse on the couch, but realize there are two furry beasts begging me to take them on a walk.  Ah...and it's only Monday.

Dear Autism, Epilepsy, 15q11.2, Mastocytosis and whatever else...please go away.....

Dear Autism, Epilepsy, 15q11.2, Mastocytosis and whatever else we've been diagnosed with,

Please go away, just for a month, week, day, oh heck, I'll even take an hour!  Don't get me wrong, Autism, Epilepsy, 15q11.2, Mastocytosis and whatever else we've been diagnosed with, you have made my children into the strong, amazing, artistic, little human beings who are full of love and giggles. 

That doesn't mean that I don't ever think about what they would be like if they were just typical little boys with typical little friends in a typical little school, eating typical little human food without, on typical little playgrounds playing with typical playground equipment all while convulsing, shaking, screeching, kicking, hitting, throwing things, throwing themselves, meltdowns that last hours over nothing at all,  hives, and all that other fun stuff we deal with on a day to day basis. 

We love all of our therapists and wouldn't change them for the world, they have become friends, family and show their true love and dedication to G&L...that doesn't mean we haven't dreamt (is that even a real word?) of a life with no therapy, running to specialists, blood labs, special needs equipment appointments, etc. My biggest decision used to be which shoes to wear or which shirt my boobs looked better in.  Now I have to make decisions everyday that affect G&L's entire life.  The Hubs and I always joke around that G might live in our basement one day so we need to move into a house with a basement.  We joke about it  because we realize it could very well be our reality one day.  

While we're on it?  Why do I keep saying typical and not normal?  My kids ARE normal.  Normal for them, and normal to us.  What is normal?  Everyone has their own sense of normal.  What's normal for my life, isn't he next persons normal. It's normal for me to want to wear hot pink and leopard print, it's normal for my friend JSM to wear all back, it's normal for my friend GWB to have red hair, It's normal for my friend JAN to have curly hair.  Autism and everything else is our normal, but sometimes it would be nice to have someone else's normal for a month, week, day or an hour.

So, like I was saying, Autism, Epilepsy, 15q11.2, Mastocytosis and whatever else we've been diagnosed with, has made our boys who they are, but I often wonder who they would be if the world didn't consider them as little boys with special needs, but typical little boys who have lots of love, giggles and smiles to share.

Signed,
One exhausted mama

I've Been A Bad, Bad Blogger

I just noticed after a friend pointed it out, that this is my one year blog anniversary.  My last post was May 8th. I didn't forget about my blog, life took over. The Hubs has been deployed, the boys have turned into three year olds, who may I add everyone warns you about the terrible two's....no one ever warns you about the terrorsit threes!!!  Good Lord these boys are testing my patience. 

A little update...OK, so it will be a long update. G&L were in summer school all summer. It was only half day, but it was better than nothing.  It helped them stay in the groove of school.  We also took them to the beach, Sea World and some local places.  They LOVED the beach!  The hubs and I got to go away for the night and headed to the coast.  We fell in love with a little beach town and are trying to make it our mission to move there.  Surprisingly for a little beach town they have some amazing Autism resources and special programs for the boys, which besides the hubs having a job, is our top priority.

The new school year has been off to a great start.  The boys are doing well and love their teachers.  Two of them are the same teachers from last year, which I think has helped with their transition.  L has become a talking MACHINE!  One day he came up to me and said out of the blue, "Hiya Mama!"  I about fell over!  A lot of his speech is repeating what he hears, and then then turns it into his own sentence, but I'll take it! Sensory wise, he still has issues but we've seen so much improvement!  We just switched to a new OT, so fingers crossed it goes well. L is also a ladies man!  He loves the ladies, young and old.

G has made some progress.  It's been a slow progress, but progress is progress in my book!  He now knows most of his animals and the sounds that go with them.  He's definitely become a stubborn little boy!  I think his stubbornness and drive to want to do things on his own more and more, will help in the long run. He's a boy who knows what he wants and goes after it, or throws himself on the floor and screams til we can figure out what he's after so we can help him.  He still has his basic food group of cream cheese, goldfish crackers, banana's, grapes and blueberries. 

Both boys have started horse therapy!  G jumped on the horse like he's been doing it his entire life...you know, all three years of it.  L was a little but more apprehensive but once he was on there he was loving it!  I was so proud of both of them for trying something new.  The hardest part was trying to get them to wear the riding helmets.  After we won that battle it was smooth sailing. Here they are on their horses!

Although I normally keep this blog about the boys, I just have to share that this mama bear just learned how to shoot a gun, so watch out!  I was terrified at first, I had never even touched a gun!  Thanks to my awesome friend M and a nice man at the range, they both made me confident enough to try it.  I seriously loved it!  It was empowering just to know, that I could do it, and it wasn't as terrifying as I thought it would be.  Do I want a gun in the house? No.  I'm not ready for that, I don't know if I ever will be, but at least I know I'm not scared of them anymore, and I know how to handle one.

                                                                        That's Me!
                                                         (Real women shoot in flip flops!)

My goal for the next few months, for all three of my bloggers fans, (Hi Mom, Dad and Sissypants) is too try to keep up with this thing.  I started it for a reason, and I hate that I let it go.  Gotta follow through Yo!

Where Did April Go?

I've been a super slacker on keeping up with my blog.  Sorry to all my fans...all two of you, mom and dad ;)

There has been so much going on!  Last weekend we had our Autism Walk!  It was such a nice spring day for it.  Our team looked super cute in our Autism shirts, socks and headbands.  We totally rocked it.  G&L did excellent at the walk.  Much better then when we tried the March of Dimes walk a few weeks prior.  At the Autism walk, there were no loud speakers, music blasting etc.  It was perfect for them.  The one thing I enjoy most about these walks is the sense of community.  So many times we feel like outsiders because our family doesn't fit into the, "norm." My children flap, scream, screech, meltdown, run away, twitch, and most of the time live in their own world.  When we go to events like this, we fit right in, we get no strange looks and rude comments. We can all be ourselves and it's, "normal."  I'm not really sure what normal is considered anymore.  The flapping, screaming, screeching, meltdowns, running away and twitching is our normal.  I'm so grateful for the friends that come out to walk with us and to all the people that donated to our team.  We came in 4th place for our personal goal, and were in the top 8 for our team. Not to shabby!  There were a few team members that couldn't make it last minute due to sick kiddo's, but we know they were there in spirit.

 Team Thompson Twins

                                             GBW showing off her headband                                              

 Me with G&L

The boys started swim lessons this week.  G is a natural.  I'm pretty sure he'll be on the Special Olympics swim team one day.  L on the hand may do better at cross country, since he loves to run.  He wasn't too keen on the pool. I think the vastness of it was too much for him.  I think another month or so and he'll be just like Nemo, minus having his mother eaten by a shark (we can only hope). He held onto the swim instructor for dear life!  G on the other hand was trying to swim on his own. 

Things have been going great with school!  We couldn't ask for more dedicated and loving teachers.  They really care about the boys and love them.  We're really lucky to have such a great program for them here.  L has come such a long way since starting school.  He's saying more and more words.  It's pretty amazing.  G still isn't speaking much then the saying "bubble" and "thank you" but he's figuring out other way to communicate.  The boys just got into the extended school year program.  It's only four days a week and for half a day, but it's better then nothing.  They'll rock it as usual! Autism can't beat my boys down...or epilepsy or SPD, or Masto...I can go on forever here!

Until I have time to write again my lovely fans (cough, cough, mom and dad!).

Spring Break Is Not What It Used To Be!

Gone are the day of a carefree spring break, filled with friends, booze and sleeping in late.  Now spring break means rowdy threenagers waking me up early, demanding milk and breakfast and destroying the house every morning in 3.3 seconds. Is this how my parents felt when my sister and I had off for Spring Break, or any break for that matter?!?  I thought they loved us being home!  I guess I was wrong.  I used to also think that my mother loved sitting in the heat to watch me play softball every year.  A few years ago I was told otherwise...and you think you know someone!

Yesterday we spent the afternoon at Children's for G's neurology appointment.  It went well, we get to go for another EEG soon. Oh joy! L has turned into a talking machine!  He is like a sponge! Everything I say, he repeats.  It's pretty cool if you ask me! I really need to start watching my potty mouth.  I believe he may have repeated and F bomb.  Whoops!  Live and learn!  Although G still can't talk, he is finding other way to communicate with us.  It's pretty cool.  I can't imagine the frustration of wanting to say something but not being able to get it out. The boys are LOVING school!  Some afternoons when I go to pick them up they don't want to leave.  Other days they can't get out the door fast enough. We are lucky that they have amazing teachers that care about them. We just got news that the hubs will be gone another month.  BOOOOO! We were so looking forward to him coming home.  The boys have changed so much in the time he's been away.

Last weekend we had the March of Dimes walk.  Team FAMM did amazing and raised $4000 in a month. Imagine what we can do in more time!  It's was a awful for the boys.  we ended up leaving before the walk even started.  I think between the loud noise, lots of people, the heat, and many other factors it was to overstimulating for them.   Needless to say, was ran back to the car, all three of us crying, and hightailed it out of there!

Today we went to Sea and Explore.  It's a therapy place but they open up two hours a day for free play.  The boys loved it!  The therapists that work there are amazing and the boys had so much fun. We will definitely be going back! It was a bonus that we were the only ones there so G&L had the run of the place.  Now they're have a lovely snooze and then we have to go pick our sick dog up from the vet.  Poor girl has been throwing up and won't eat.

Cheers to Spring Break!

PS...Being an adult is overrated! 

Why I support Autism Speaks.

As we approach April 2nd, and the "Light It Up Blue" campaign from Autism Speaks I feel I need to share our story, as too why we support it.  I know there are many that do not, and they are entitled to their own opinion.  This is just my view, as a mom to two amazing, smart boys with Autism.

To start, if one person asks me to educate them about Autism beause of Light it UP Blue and World Autism Day, then to me, it's a success.  Secondly, for our family, Autism Speaks has helped us first hand.  When the boys were first diagnosed with Autism almost a year ago, we felt lost, defeated, and like we were the worst parents in the world.  G&L we diagnosed as moderate to severe, we were given suggestions on what to do as far as therapy, and then sent on our way.  What do we do with all this information?  Who do we turn too? I started researching on line and came across Autism Speaks.

After I wrote down a list of things to ask, I took the plunge and gave them ( Autism Speaks) a call.  The person I spoke too, gave me a ton of information and was able to point us in a direction and helped us get started.  We were given phone number to call that could help us locally, different therapies, and most of all, this woman listened to me cry for about an hour.  To this day, I still speak to this woman and she checks in to see how the boys are doing.  Although we have never met, I consider her a friend, she was there to help us, when we felt lost.  Now, a year later, I am stronger, my husband is stronger, and most importantly, G&L are stronger and doing amazing things. 

Where does all the money go?  Last year while I was fundraising for the March of Dimes people were boycotting, saying they only get $.10 on the dollar and that was why it was called March of Dimes.  that is false, as is a lot of things that are spread about non profit organizations.  You can look up just about any organization online and there will be good things said, as well as bad things, and many things that contradict each other.

If I can help one person who is newly diagnosed, or educate one person, or help one family get the care they need to give their loved one with Autism the best life possible and the best services, I'm going to do it. 

 You can agree with me, or disagree with me, we all have our opinions.  My views are coming with my personal experience on how Autism Speaks helped my family.  I will "Light it Up Blue" and I will walk with pride on April 26th to raise money and awareness.  Most importantly I will continue to love my children for everything they are and everything they will become. They're going places in this world and I am honored that I am here to be by their side and chosen to be their mother.

Yes, I Would Take It All Away If I Could!!

It's been so long since I've had time to write.  With the hubs being gone, I barely get a second to come up for air.  The boys have been sick for the past month, I'm fighting a staph infection and we're all pretty much exhausted!

Today we went to a birthday party for some twin friends third birthday.  The boys had a great time!  We got out of there just before them meltdowns so it was perfect timing!  The awesome LC came with us to help with the boys.  I really don't think I could have done it without her.  She is amazing with the boys, and they love her so much.  She's one of the few people we trust with G&L.  It's an added bonus that she teaches kids with Autism.

As World Autism Day is approaching (April 2nd)I've been seeing a ton of things online boycotting it saying it's not about finding a cure it's about acceptance.  World Autism Day brings awareness which helps with acceptance.  I've also read tons of blogs and posts from people saying it's not a disease so don't try to cure it.  I've said this before and I'll say it again.  I know many disagree with me but if I could take G&L's Autism away, I would in a heart beat.  It kills me to see them struggle, to see friends with babies that are only one, passing milestones that we dream of them reaching some day.  I look at it like this, G has epilepsy.  He takes medicine to help reduce his seizures.  If I could take his seizures away, I would in a heart beat.  If I could take his Autism away I would in a heart beat. If I could take away L's SVT and Mastocytosis, would I?  You bet!  The same way I would want to take away his Autism.  Why would any parent, or any human being for that matter, what to see a person, especially their child struggle to talk, communicate, walk, handle emotions, etc.  I know I can't take their Autism away, but I pray that one day they can fully communicate, be independent and maybe even have a job. I have the same dreams for my children that any parent does.  I shouldn't be ostracized for wanting my children to be nuerotypical!  No parent says, "Gosh, I really hope my child has Autism!"  Just because they have it, makes me no different. I want the best for my kids.

With all that being said, on April 2nd....LIGHT IT UP BLUE!  Wear a blue shirt, put a blue light bulb on your front porch, heck...eat a blue cupcake!  Autism is real, Inspire people, Educate people, Make people aware!  This girl will be decked out in blue!

The Magical Place Called School.

For the past week the boys and I have been fighting a beast of a cold.  I think we finally might be on the mend!  Take two kiddo's with Autism who don't sleep much to begin with, add in a stuffy, runny nose and a cough and what do you have?  No sleep for Momma!!!  The hubs is on his deployment and the poor guy is sick too! Go home winter, you're drunk!

Yesterday the boys got an early dismissal from school.  You know, since it was raining!  They also had a delayed opening this morning, which was understandable since we did get some ice tonight.  What did that mean for me?  Two crazy three year olds bouncing off the walls and screaming since their schedule was thrown off.  Ah, the glamorous life of an Autism family.  I'm totally that helicopter mom who is never more then three feet away from her children.  I was terrified to send them to school even though it's a school for special needs.  What if something happened?  What if they were upset and I'm the only one who could understand their nonverbal ways? What if they wonder off? What it, what if, what if.  Well, let me tell you!  The place they call school is what I refer to as this magical place that helps me keep my sanity.  I never thought I would feel this way.  After being with my boys 24/7 for the last three years, I couldn't imagine them not being with me all.the.time.  Well, let me tell you, this magical place takes care of them, teaches them, and loves them for 6.5 hours a day!  They love it there!  They've made friends with other adorable non verbal kids, they have amazing teachers who love and care for them, and I get some time to myself.  I never realized how much I needed this time, until I had it!  Holy, mother of Autism! Did I ever need it!

I attempted to potty train L over the weekend.  It went as I suspected.  NOT GOOD!  He could care less about it, but at least our floors got a good cleaning.  I put him back in diapers and called it a day. He's wasn't making the connection and I'm not pushing it.  When he gets it, he gets it.  I think G is going to be in diapers til he's 20.  It is, what it is.  L's teacher is going to send me some info on potty training non verbal kiddo's with Autism. we'll see how it goes.  G just kept watching L pee on himself with a confused look.  I think he was just happy it wasn't him!

Stay tuned for our awesome raffle we're holding!  Lots of things to auction off so we can raise even more money for our Autism walk!!

Holy Cow!! I Have Threenagers!!

What a whirlwind of a week it's been!  My babies have officially turned three!!!  How is this possible?  I know people say time flies when you have kids, but it doesn't have to fly this quickly!  Even though they are only three, and we try to live in the now, it's so hard not to think about what happens in 20 years?  What will they be able to do?  Where will they be?  We'll save that for day dreaming!

Why else was this week a super big week?!?!  G&L started school!  Unlike the school we tried with L last year, this is a school that is made just for them, with kids just like them, and teachers that have the resources and education to help them and work with them.  It's such a breath of fresh air.  There are only 8 kids and 3 teachers!  G&L are having a bit of a rough time with transitioning but they're starting to get it.  They ordered adaptive seating for G which is awesome for him!  They are exhausted from school because they refuse to nap during nap time (can you blame them with all that new stuff around them?), but as soon as they get done with school we start running around for therapies.  Such a busy little life they lead for three year olds! I have a meeting with the school PT and their lead teacher on Monday to go over some things for them and to come up with a plan for them in school.  Mainly G.  G is a big wanderer and needs a bit more attention.

Another big transition is coming up for the boys this week.  The hubs is deploying for a few months.  Now that they're getting older, I start to worry how it will effect their day to day lives.  Especially L since he loves spending time with his daddy.  I do notice that when ever the hubs is deployed, L seems to gravitate towards friends husbands.  He has a male teacher assistant so maybe that will help him with the transition of daddy not being here.

Here's a picture of our crazy family from G&L's birthday party.  This picture makes me laugh because it totally captures us!!

Here's a collage I made for their birthday! G's newborn pics on top, L on the bottom.

Walk For Autism - Team Thompson Twins

Autism Statistics:

 Every 11 minutes someone is diagnosed with some form of Autism. 1 in 54 boys are diagnosed with Autism while 1 in 252 girls are diagnosed in the United States. Autism affects over 2 million individuals in the U.S. and tens of millions worldwide. Autism is the fastest-growing serious developmental disability in the U.S. and costs a family $60,000 a year on average. G&L are just two people out of many that are affected with Autism. 

 How can you help? By raising awareness, educate people and be proactive. No matter how prepared you are as a parent, no one ever thinks their child will have Autism. Please help us raise awareness and help in our fight to educate people about Autism and most importantly to help us fight for G&L. Educate! Donate! Join our Team! Just click on the Link below!


http://www.walknowforautismspeaks.org/faf/donorReg/donorPledge.asp?ievent=1084973&lis=0&kntae1084973=C48167EBF9AC4B999BB0628E24CE57EC&supId=400768536&teamName=Thompson%2BTwins

PARTY TIME!

It's been a while since I last updated.  We had the boys IEP meeting earlier in the month.  I am happy to say, it went GREAT and we got everything we wanted for them!  They IEP team was pretty easy to work with and they weren't the nightmare I had been warned about.  Maybe they were warned about me?  HAHA!  So, the boys are getting tons of services and will be started a special preschool program...NEXT WEEK!!!  Hold me!  My sister asked me who was going to cry more.  I think it's a toss up between me and L.  I could be wrong, but I think G will be OK, even though he's the one I'm most worried about leaving.  There are only 8 kids in the class including them and 4 teachers.  It's so hard to leave my babies!  I'm already having major anxiety over it.

Over the weekend we had their third birthday party!  Their birthday isn't until next week but the hubs is going on a deployment so we decided to have it a little early so he could be here for it this year.  He had to miss their second birthday.  We had their party at a Children's museum.  We rented it out after hours so we had the place to ourselves.  All the kids had a great time and I'm in love with how the cake came out!  If anyone in the Fayetteville, NC area needs an awesome cake, I highly recommend Cakes by Carly.  She did an amazing job and we will definitely be using her again. She even made little Autism ribbons to put on the pirates. LOVE LOVE LOVE!

The boys did pretty well at their party.  L did a wee bit better then G.  G had a few meltdowns  but he was also exhausted.  They both refused to nap that afternoon.  I would say it was because they were so excited about their party that evening, but they had no idea about it!  I told them all about it, but I'm pretty sure they didn't understand.  I think the best moment of the party was when G picked up the phone and screamed, "HEP (help)!!!" into the phone! I guess he wanted to get out of there. We had a professional photographer there so I'll post some pictures when we get them back.  I can't wait to see them!

What else made their party so special?  Seeing how many people where there because they truly love G&L. Everyone one from family, friends, therapists and their Early Intervention coordinator.  We wouldn't be where we are now, with out all of these amazing people.  They boys received so many thoughtful gifts to help with their therapies.  There are a lot of days we feels so alone in this battle with Autism and isolated from the rest of the world, but on this day we felt loved.

Not a day goes by...

Not a day goes by, that the word, "Autism" isn't always in my head.  I think about it while I'm grocery shopping, going to bed, watching movies, talking to people about other things, etc.  I think there was an occasion maybe a few months ago at a girls night out that I forgot for a minute.  Then, it happened...everyone started talking about their "typical" kids.  I love all their kids, I love them like they were my own, but I get jealous!

Why do I get jealous?  I get jealous at the funny things your kids say, the games they play, the crafts they make and when I hear them call you momma or dadda. I get jelous that while we're running from therapy appointments to Dr. appointments your going on play dates and shopping. I get jealous that all your kids can go to any preschool you choose, while we have to fight to get two spots in a special needs school...the only one in the county.  I'm jealous of your family vacations that we may never be able to take. Have I mentioned that I'm jealous that your kids can eat in a restaurant and eat real food and not throw it at people? G&L were delayed, but that was OK.  The specialist kept telling us they would catch up by the time they were two like most preemies.  We just kept telling ourselves that two was the magic number. Oh, I guess I need to throw in, that even though I get jealous of friends, I still love them. <3

As two was approaching we knew for sure our adorable little men did not catch up.  In fact, we were telling the Dr.'s when they were 1, that we knew they had Autism.  We were always told, they just have delays.  18 months came approached, and they grew more concered.  We hit the big two!  Suddenly, MRI's were ordered, blood tests were taken, more specialist were introduced we learned about genetics and chromosomes and epilepsy and Autism and just about everything else under the son.

I now walk around with a medical notebook about the size of two old school encyclopedia's that contains test results, evaluations, medical papers, research, studies done in other countries and perhaps some coffee stains and cookie crumbs (all that research can make a girl sleepy and hungry).

In just a few short weeks my babies are turning three!  I can already see what amazing little boys they are becoming.  They work so hard and they don't let anything hold them back. Of course they get tired and cranky and have day that they just don't want to do anything with therapy, but everyone has days like that.  Especially toddlers.  I still have big dreams for them.  A friend asked what could I see them being when they grow up.  Even with their disabilities I can see G being and Engineer.  He loves to inspect things close up, and figure out how they work.  Show this kid some gears and he'll be happy for hours.  I can see L being a math genius!  This kid loves numbers, math, watches, anything with numbers.  He must have gotten that from his dad.   The hubs is the one who got me through algebra.  Without him, I may have never graduated from college!

So, the gist of this post?  I'm not really sure!  Just throwing some stuff out there.  But to end on a good note, sweet L, would like to sing everyone a bed time story.

Three Year Olds Are Not For the Faint of Heart.

My little babies, the ones that were holding on for hear life almost three years ago, are turning THREE in a month.  Whoever said the two's were "The Terrible Twos," are big, fat, ugly liars!  Now that we're approaching the three's, I can say, the threes are a million times worse! The pushing and hitting and tantrums have magnified, add Autism and a lack of communication skills and this momma feel like she's a full time Referee/Lion Tamer/Warden.

G started his seizure medication.  I'm thinking this isn't the right one for him.  Since he's started taking it, my sweet, laid back little boys has become a moody, cranky and perhaps possessed (but cute) little man.  It all started the day after his first dose of medication.  Needless to say, I have a call into the neurologist to see if this is normal and to see if we can try another medication. What if his seizures are what made him so calm and this is the new him?!?!  We're in for it if that's the case!  I've lost count of how many times I've been hit or kicked in the face since he started the medicine.  This just isn't my sweet boy.  He's also been extra stimmy this week.  My poor baby. On a posative note, he now likes "Bob The Builder."  When they sing, "Can we build it?" G yells out, "YEAH!!" in his sweet cute little G voice.

L recently had a little word explosion!  It's amazing!  Anytime it rains he screams, "It's Snow!!!"  He also says it when he rips up little pieces of paper and throws them in the air over his head!  He also handed some letters to the hubs the other night and told him to, "throw."  He's also started to say, "train."  They aren't really very functional words for the every day thing, but we will take it.  It's more then he's ever said, so I am prouder than proud!

A New Year, A New Diagnosis.

Here we are, 2014.  A new year a new go at life and all that other fun stuff.  What does it mean for G?  Another diagnosis.  If y'all remember about two weeks ago, G had a 72 hour EEG done.  The results were delayed because of the holiday's and the hospital being short staffed due to the season.  Well, we got the call today.  G has epilepsy.  He's having seizures on both sides of the brain, multiple times a day.  Tomorrow he starts taking Zorontine to see if we can get them under control.  The hubs and I were shocked.  We thought the test wasn't going to show anything.  When he was one, he had a sedated EEG which didn't show anything.  The Dr. said he can't say for sure he wasn't having seizures, but he wasn't having them during the test.  As time went on we kind of put it on the back burner and thought it was all due to his Autism.  It wasn't until two of his therapists had brought up that they thought he was having seizures, and a phone call or two, or three of four from me, that the neurologist decided to do the 72 hour EEG.  The therapists were right!

What are we hoping for?  We're hoping that maybe some of his delays and regression are due to seizures and with the right medication he may have some improvements. We're not expecting him to wake up the next day and start talking, but maybe over time it might help, maybe it'll help with his balance and/or maybe it will just help him be able to concentrate.  Maybe it won't make a difference.  Only time

In other news, G said "more" the other day and L started singing along with Bert and Ernie whenever they sing, "I LIIIIIIIKE YOOOOOOU!" Cutest thing ever!  L has also been a bit of a bully lately and pushing G around.  This age is no joke!

Farewell to 2013!

As we say goodbye to 2013, all I can think about is what a crazy year it's been.  We got our official Autism diagnosis, SPD, Hyperlexia, seizures, mastocytosis, genetic deletions and mutations.  We learned for every heartache, our family grew stronger, with every diagnosis we learned to work and love harder.  Most of all, we learned that we didn't lose the dream of the perfect child, we just had to change the path. To us our children are perfect for them, and perfect for us, if that makes sense. They have introduced us to a world we knew nothing about but learned more then we ever thought we would.

We are thankful that in 2013 we became a part of a strong Autism community.  We befriended amazing families and children we may otherwise not had the chance to meet.  We lost friendships and gained new ones with people that understand our journey and have been along for the ride with us.  To this, we will forever be grateful.  The amazing people we have met, weather it be other families, therapists, doctors and even strangers we crossed paths with have given us a shoulder to cry on, a pat on the back, cheered on our children and have became a part of our lives and love G&L for everything they are and encourage them to become everything they can be.  Words can not describe how thankful we are for these people.  I can not say enough for our friends that stepped up to the plate and embraced us, while others shied away.  You will always have a piece of our hearts.

We don't know what 2014 will hold for G&L.  I think it will be exciting, full of adventure and a lot of hard work.  They'll have their good days and bad and they will continue to teach us the power of perseverance.  From our small preemies to now almost three year olds, we have learned that almost anything is possible.  This past year we've learned so much from them.  We've learned it's OK to give up today, as long as you try again tomorrow, not to sweat the small stuff, because there will always be something bigger and better and most importantly, hugs from a toddler will cure just about anything.

Bring it on 2014!  We're read for what you give us!  This is going to be the year of G&L  Happy New Year Y'all!

Christmas in a Padded Room.

Merry Christmas and Happy Holiday's to everyone!  I'm Jewish, Hubs is Christian, so we do just about every  holiday under the sun and our children...well, they're most likely a bit confused.  Well, one day they might be confused.  Right now they don't really seem to understand much.

Yesterday started out as a normal day. Fighting, pushing, stimming...you know, the norm.  We finally pulled out the gifts (We don't do a tree because the boys can't be trusted around it), and they tore into the presents.  L was all about it, G wasn't so sure about it but once he saw the toys, I think he started to catch on.  He became fixated on the first toy, so the hubs and I kind of opened the rest of the gifts for him, but tried to get him to participate as much as we could.  L was all about that paper! The sounds of ripping paper, new toys, excitement and new sounds coming from the toys is enough to put anyone in a corner to rock back and forth.  It was definitely way too much for the boys. Live and learn.  They become SO overstimulated, the rest of the day was pretty much shot. It turned into a no napping, crying fighting super stimmy kind of day.  We really could have used a padded room in the house yesterday.  That's just for the hubs and I.  I think the kids would have needed there own.

 I haven't smoked in over 13 years but let me tell you.  I was jonesing for one to calm my nerves.  Rest assured, I did no such thing. Instead I ate a chocolate Santa. Not such a healthy alternative but at least I spared my lungs.  The boys are still a but overstimulated but are doing much better then yesterday.  I pray they take a nap today because this momma needs a nap in the worst kind of way!  I already have two cups of coffee down the hatch and it doesn't seem to be kicking in.  Thankfully the boys are playing nicely for the moment...with the help of Sesame Street in the background. MOTY!

We don't have any therapies this week.  I REALLY wish we had OT today to help recenter G&L.  Ot had done wonders for them. They could sure use it.  I think I could use come brushing a joint compression as well!  Sometimes when the boys are on all the swings and the huge ball pit during therapy I have to hold myself back from not diving in with them!  It looks like so much fun and so soothing.

The hubs parents are coming for a visit for the next week.  I'm hoping to keep the boys on schedule as much as we can.  They thrive on schedules.  Once their schedule is thrown off it can take a while to get back on.

In other news, L has finally started feeding himself with a spoon!  So excite!!  He's doing such a good job with it.  G has regressed a little bit, but he's trying.  L has also started to sing a lot. Although I love his singing, I would rather him not do it at 4am.  Kids with Autism need turn off switch so they could sleep at night.  I'm sure the Autism world would be a happier place if everyone could get a good nights sleep.  Two hours till nap time!!!!

Well, Thank Goodness That's Over!

What a long weekend!  Last Friday G had to go to the hospital to get hooked up for a 72 hour EEG.  He's had the one hour sedated before, but never for 23 hours.  This kid fights anasthesia like it' his job.  Three medicines and two hours later, the kid finally went to sleep!  They hooked him up to everything and then he didn't want to wake up!  It took some convincing for him to get up, such as a cold wash cloth on his face.  Finally, he woke up, he was very angry, but awake.  Once he had a snack and a drink and didn't vomit, they let us go home with everything attached to his head.

We were so worried that he was going to rip off all the leads before we even got home.  I am so proud of how well he did!  For a kid that hates things touching him he did amazing and only fussed a little bit about it.  He did much better then I would have done with all that stuff on my head.  I'm pretty sure I would be a nasty grouch the entire time while complaining and bitching out everyone who crossed my path. We were also proud of L for leaving G's head alone.  We thought for sure he was going to try to mess with it or try to pull the little back pack off of G.  These kids amaze me sometimes...ok, well most of the time.  G was not happy when they took everything off today.  My poor baby.  Both boys have been through so much in their almost three years then I ever have in my 35, ooops I mean 29 years.  So, now we wait for the results.  They're checking for seizures since he often goes limp and just goes goes blank.  I'm hoping we'll hear back this week but won't be surprised if we don't since this week is Christmas.

L has been a talking machine!  He's really doing a lot of echolcia! It's so cool to hear him say words.  still waiting for momma!  Come on kiddo!  Spit it out! M O M M A!!!  He did say Mety Chritmiz yesterday while listening to a song.  It was really awesome!  He loves to sing and dance.  His favorite is the chicken dance.  It cracks me up every time!

I hope you all have a Merry Christmas for those who celebrate!  Here are some pictures from the EEG and some of L being goofy!

L being a goof ball and cheesing it up for the camera!

G trying to wake up from sedation.

G belting out some high notes!

Where did my children go?

Where did my children go?  Who are these beasts in my house today?  Screaming, fighting, pushing, yelling, you name it.  Why you ask?  All over a piece of paper that has the alphabet written on it! I wrote it again on another piece of paper, but I guess that one just wasn't good enough!  Who would have thought a yellow piece of paper with the alphabet on it would cause such problems?

Anyway, so Sunday night we took the boys to Holiday Express!  I think they had fun.  It's sometimes hard to tell.  We know G loved the train ride.  That kid was grinning ear to ear.  L not so much.  He had a death grip on me but would smile occasionally.  He's not as into movement as G, unless he's running.  Then we took them on the carousel of death! I call it this because this carousel moved at warp speed!  I was pretty sure we were going to see kids start flying off of it.  The hubs went on with G and I took L.  I think L is more like me and doesn't do well with fast speeds.  The hubs and G did well on it, but even the hubs who loves rides and roller coasters thought it was a little crazy! At one point L put his head on me and moaned a bit.  I thought for sure our friends J&C who were on the horses behind us were going to get a face full of L vomit!  Thank goodness he held out!  It could have been bad!  After that we walked around for a little bit to see all the lights and then went out for dinner.  The boys did so well at dinner, since they were so exhausted.  They almost fell asleep.  It was the first time we have been to a restaurant since April when G started pelting apples at the table behind us.  Fun times!

This Friday we take G to the hospital for his 72 hour EEG.  It should be fun trying to get him to keep all those things stuck to his head....said no Autism parent ever.  He hates things on his head, so this should be quite the adventure.  We could use all the extra thoughts and prayers you have!

Here are some pictures from the train ride!!

Oh, and for fun, here is a picture that L's running buddy made.  She's such a sweetie!

The Land of IEPS, Stimming and the Big T word, "Transition."

Today we had what so many parents of special needs kids fear, the IEP meeting.  For those that don't know what an IEP is, it's an Individual Education Plan.  Every child in the school system with special needs is supposed to have it.  It consists of goals and services that is decided on by the IEP team, which includes the parents. So, today was our second IEP meeting.  The first one was at our house.  It was more of a, "this is what's going to happen" type meeting. Today was a more important meeting.  They learned more about the boys and made decisions on what assessments they need.  Last night was nervous to the point that I didn't want to eat, and I LOVE to eat.  I went in there confident, with the boys notebook full of there info since birth and I was ready to go.  Turns out I talk a good game, as they were all impressed.  I even caught some mistakes on their end.  Kudos to me ;).  This momma bear isn't going to let anyone inadequately determine the fate of G&L. They jokingly told me I should work there.   It blows my  mind when they told me some parents don't even come to the meetings.  How could you not want to help pave your children's future?  Isn't one of the biggest goals of being a parent to have your child have all of the greatest opportunities life has to offer?  Just because G&L have special needs, it doesn't mean they deserve any less.  So, all in all it went well, everyone seemed nice and wanted to learn about the boys.  We'll see how the rest of the process goes.

I wish my boys could stay itty bitties and be in Early Intervention for ever.  They say kids with Autism have trouble with transition.  Well, let me tell you...I can see why!  I'm scared to transition the boys into the school system.  Who will hold their hand? Wipe their tears? protect them from bullies? Transition from EI to the school system is not fun.  It's an entire new stage in life!  It's like saying your babies aren't babies anymore...even though they'll ALWAYS be my itty bitty babies!

Today has been a super stimming day full of head stands, spinning, VERY LOUD screeching, running, flapping crying, jumping, no napping kind of day.  G has developed a really goofy laugh that makes me crack up every time I hear it.  L has be a super snuggler today!  I think he has a crush on a friends 4 year old daughter.  I guess he likes older women. It's pretty cute!

So, to those about to transition to the IEP process, take a deep breath, get organized, know your rights, and have all your information there in front of you.  Remember, YOU are your child's best advocate.  No one knows your child like you do. They need you to be their voice.