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.

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.

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

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.

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!!!!