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.