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!

This Showed Up in My Time Hop Today.

I had forgotten all about the first time I read the poem, "Welcome To Holland."  It describes so well what I was feeling at the time, and still am.  I thought I would share it here.




Welcome to Holland
Written by Emily Perl Kingsley (in 1987)

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to imagine how it would feel.
It is like this...

When you're going to have a baby, it is like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The Gondolas of Venice. You may learn some handy phrases in Italian. It is all very exciting.

After months of anticipation, the day finally arrives. You pack your bag and off you go. Several hours later the plane lands. The stewardess comes in and says, 'Welcome to Holland'. 'Holland? ' you say. 'What do you mean Holland? I signed up for Italy! ! ! I am supposed to be in Italy. All my life I have dreamed of going to Italy! '.

But there has been a change in flight plan, they have landed in Holland and there you must stay. The important thing is that they have not taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It is just a different place.

So you must go out and buy new guidebooks. And you must learn a new language. And you will meet a whole new group of people you would never have met before. It is just a different place. It's slower paced than Italy. It's less flashy than Italy. But after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, and Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that is where I was supposed to go, That's where I had planned'.

And the pain of that will never, ever go away, because the loss of that dream is a very significant loss, but if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

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!!

Dear Autism, You are a B*tch!

This is a whiny entry.  Don't say I didn't warn you.  Today I want to give Autism and big FU!

So G&L had a field trip for school today and I was a chaperone. I thought I was going to lose my mind. L did great for about two hours which is really great for him. He just got super tired and started to slow down.  Even though he was exhausted he still managed to hold it together.

G was a MANIAC...people (not his class) were staring at him and me, like I was a big A-hole. He kept throwing himself on the floor, screaming, flapping, crying, yelling etc. Anytime I would try to pick him up to comfort him he would hit me in the face.  I know he was acting like this because he was way to overstimulated, but it doesn't make it any easier when your in the midst of it.  I was a little over zealous and didn't bring his stroller inside(he has a wheel chair stroller which has a compression clip on it, to help him and it's anti tip for when he throws himself). We had to walk about one city block back to the car and he kept throwing himself on the side walk and having a protest. I was pouring sweat by the time I got back to the car. One of his teachers asked if I needed help getting them back to the car, but stupidly, I said No. As G is throwing himself on the sidewalk people were walking by giving me side eye.  I may have said, "What? You've never seen a three year old with Autism?" to someone. What the hell is wrong with me? I need to accept peoples help! They are trained to deal with this! I just feel super defeated today. Autism is a bitch. The end.

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.

Snow Apacolypse

It's been a while since I last posted.  We've had a busy couple of weeks here.  G&L both had colds, and then I got it.  Fun times!

The Dr. had to change G's seizure medicine since the one he was on turned him into a beast.  I think this one might be working, but I think he's still having some seizures. He goes back to the Dr in two weeks, so we'll see what he says.  Poor G.  Can't catch a break...ever.  Good things he's so freaking cute!! ;)

We had a huge (well, huge for the south), snow storm two days ago.  The best part about it was our heat stopped working in the middle of the night!  My children turned into icicle people!  It's was soooooo cold!  Thankfully the repair man was able to make his way out here even though the roads were super icy.  That man deserves an award! The same repair man saved us over the summer when our AC stopped working during a heat wave! L gave him a huge hug and forced him to snuggle before he left.  Thank goodness the guy has kids or it would have been like one of those moments when a person who hates dogs  has your dog begging them for attention and they're just kind of like, "Oh hi, dog, go away now"  Yeah, it had the potential to be that kind of moment.

It turns out our dogs love snow and keep wanting to go back out in it.  G&L on the other hand, well they are more then happy not to touch it.  They like looking at it from inside but aren't too fond of touching it.  Maybe one day I'll get them to dive right into it.  They're more like their mommy, they would rather a warm day spent in the pool.

Next week we have their IEP meeting.  Keep your fingers crossed for us that it all goes smooth and we get everything we want for them!  In less then two weeks is their, pirate birthday party!!  I have so much to do to get ready for it!  I'm pretty sure they have no idea what their birthday is, but I'm really excited for it!

Hope everyone is staying warm and if you live somewhere warm and tropical either send me a plane ticket or send some of the sunshine our way!

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.

Sweet, Sweet Avonte.

I write this as my eyes fill with tears. Today is a very sad day for the family of Avonte Oquendo.  Avonte has Autism and is non verbal. Four months ago he went missing from his school in NY.  He walked out in the middle of the day when no one was watching. He was never to be heard from again...until today. Last night a teenage girl spotted some body parts near the water.  Police reported there was an arm, leg, torso, jeans and sneakers. They believe it matches sweet Avonte.  The news said there should be a police report later to confirm if it is him.

Not a day goes by since this sweet boy went missing that I haven't thought about him.  A boy I have never met but feel a connection too since my boys are similar to him. People with Autism often wonder off.  If they are nonverbal, they can not ask anyone for help.  They can easily get lost, or get taken advantage of. His family sent him to school thinking he was being watched and taken care of.  I can't imagine what they must be feeling or how badly their hearts must be aching.

Parents, teachers, friends, family and strangers, we must keep Avonte's spirit alive and fight for him.  Children and adults with Autism often can not fight for themselves.  We need to make sure nothing like this happens again.  It's my worst fear as a parent. 

Sweet Avonte, you were loved by so many.  We will continue to fight the fight.  We will not fail you.  RIP

To Walk A Day In Our Shoes.

After talking to a friend yesterday, I realized not many people truly understand what it's like to live with two toddlers on the severe end of the Autism spectrum, developmental disabilities, rare diseases and epilepsy. While our house is filled with love and laughter, it's also filled with tons of therapy appointments, doctors, tears, stimming, hitting, kicking, yelling, crying and fear.  G&L are awesome and I wouldn't trade them in for anything, but I'm going to be extremely blunt.  This is not the life I imagined. I never imagined having to hold my children down so they don't hurt themselves or someone else. I never imagined having weeks filled with therapy, appointments and meetings.  I never imagined my children wouldn't be able to say momma or dadda. I never imagined my children having to go to a school for people with Special Needs.  I never imagined having to turn down play dates and parties and always having to be the first ones to leave because my children are overstimulated and about to have a meltdown.  There are a lot of things throughout life I never imagined.  If I could never imagine them, I can't expect friends and loved ones to imagine them.

Why do I turn down play dates?

It's pretty simple, G&L have a hard time being around other children.  They love adults and will snuggle with just about any adult in there path, but they don't handle other children well.  L had a few select children he likes (such as the W triplets) while G sticks to adults or stay in a corner and plays by himself.  They throw things and hit and yell and scream. I break out into a sweat trying to calm them down.

Why are we the first ones to leave birthday parties?

Besides the fact that G&L don't participate in group activities, L can not sit still for more then three seconds.  Unless there is somewhere for him to run and be in his own world, he can not handle it.  G normally just isn't really sure what's going on around him.  He gets confused and sometimes agitated.  We've been able to figure out when meltdowns are about to occur and high tail out of there before people have to witness the wrath of G&L and possibly ruin someone's party.

Why do we never go to activities at parks unless the hubs or another adult comes with us?

L is a runner, he is fast and he has no idea of his surroundings.  He could get lost in a millisecond.  It's my worst fear.  G can easily wonder off in the other direction.  Although not as fast as L when he sees something he wasn't to check out, he can't stop himself and calling out his name will not stop him, as he doesn't respond to his name. When they are stopped, meltdown ensues.  These meltdowns I speak of aren't your normal toddler tantrums.  They can last for hours and involve hitting and throwing. It can throw their entire week off and take a lot of work to get them recentered.

Why are we so strict about their schedule?

They thrive on a schedule, as do most with Autism.  They know what to expect and what's going to happen next.  When their schedule gets thrown off, it throws them for a loop and it can lead to a meltdown.  They know we get home from therapy, eat lunch and take a nap.  If we happen to do something out of that order, they throw themselves and cry.  I truly believe they have an internal clock that lets them know what time they are supposed to do everything.

Why do they do strange things?

It's simple.  To them, it's not strange. It feels good.  It's called stimming.  G stands on his head, screeches in high pitch tones, flaps his arms, laughs when nothing is happening, covers his eyes, twirls and tightens his muscles.  He does it when he's excited, scrared, bored, etc.  It just makes him feel good and it's comforting to him.  L covers his ears, spins in circles, stands on his head, follows lines, jumps, bangs his head and runs up and down the hallway. To him it feels good.

Why don't we take them to restaurants very often?

They have trouble sitting still, G throws food at people and they both have strong food aversions.  G more so then L.  If you order something and you're sitting next to G, he might start gagging just by looking at your food or smelling it.  Worst case scenario...he throws up, and then no one eats.

There you have it.  A little look into why we do things the way we do.  Even though we stick to schedules and have to avoid certain situations, we still have fun!  We find activities they like, and that they can do.  Everyday brings something new.  As their parents, we are tired, coffee doesn't have the same effect it once did and thankfully the good times outweigh the hard times.  Even though I never imagined this life, I wouldn't change it for anything.

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!!!!