Thursday, January 30, 2014

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!

Sunday, January 19, 2014

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.

Friday, January 17, 2014

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

Wednesday, January 15, 2014

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.

Monday, January 13, 2014

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!

Tuesday, January 7, 2014

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!