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!

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

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.

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!!!!

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.