Tuesday, December 31, 2013

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!

Thursday, December 26, 2013

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!!!!

Monday, December 23, 2013

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!




G trying to wake up from sedation.

G belting out some high notes!

Tuesday, December 17, 2013

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!

Wednesday, December 11, 2013

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.

Tuesday, December 10, 2013

I Did NOT Give My Boys Autism.

I read an blog a while ago and was annoyed while I read it but put it in the back on my mind.  Yesterday a friend who has a daughter with Autism re-posted it.  It wasn't re-posted because it was a good blog, it was re-posted because it made us sad, and angry for the writer.  She was blaming a million things that she did that she believes gave her child Autism.  I do not believe I did anything go give G&L Autism.  There are so many factors that causes Autism, I'm not sure if they'll ever really be able to pin point it to one thing.  Just like my dear friend S, here is my list of things that I did, that did not give my boys Autism.

I did not give my boys Autism by having twins.
I did not give my boys Autism by doing fertility treatments.
I did not give my boys Autism by having weekly ultrasounds to make sure they were still OK since they had problems in the womb.
I did not give my boys Autism by my water breaking early causing them to be preemies.
I did not give my boys Autism by being on bed rest.
I did not give my boys Autism by holding them too much as babies.
I did not give my boys Autism by not holding them enough as babies.
I did not give my boys Autism by using life saving medication to keep them alive after birth.
I did not give my boys Autism by watching Sons of Anarchy while I was pregnant with them.
I did not give my boys Autism by starting them in therapy as soon as they got home from the NICU.
I did not give my boys Autism by smoking while I was in college.
I did not give my boys Autism by crying myself to sleep praying that in the morning they would no longer struggle.
I did not give my boys Autism by having an emergency c-section.
I did not give my boys Autism by brushing my teeth or brushing theirs.
I did not give my boys Autism by taking an antibiotic while PG for an infection.
I did not give my boys Autism by loving them too much.
I did not give my boys Autism by watching Army Wives while they were sleeping on me.
I did not give my boys Autism by dreaming about when they go to college, military or get married.
I did not give my boys Autism by them having a chromosome deletion.
I did not give my boys Autism by passing down my food allergies.
I did not give my boys Autism by doing my own research.
I did not give my boys Autism by staring at them while the sleep (creepy I know)
I did not give my boys Autism...
I did not give my boys Autism...
I did not give my boys Autism...
I did not give my boys Autism...


This list could go on for ever! Bottom line is, I know I did nothing to "cause" there Autism.  No, I did not have the perfect pregnancy, they did not have the ideal birth, but the were born into a loving family that would give up their own life to make sure theirs is the best it could possibly be.  I wish they didn't have Autism, I with L didn't have heart problems, I wish G didn't have mobility issues, but they do.  I would take them away in a heartbeat if giving the option.  I can't.  Therefore, instead of dwelling on it, and beating myself up over what I did "wrong" to cause it, we live for the day and celebrate these fragile little lives.  Some days are hard, like put the white flag up in the air and scream, "I want to surrender," hard, but they are my children, I love them and will do my best for them.  Blaming myself for what others consider their imperfections will not help them thrive, will not help them become better people, and it sure as heck won't change anything.

Friday, December 6, 2013

"I OK!!!!"

Happy Friday y'all!  It's a beautiful warm day here in NC.  It's supposed to be close to 80 today!  Crazy to think that on Sunday they're calling for mid 30's and a chance of ice.  Hopefully the weatherman is wrong, and it will be bright and sunny the rest of December.  A girl can dream...can't she?

Speech therapy went great this morning! G said "pop" for bubbles! At one point he got upset and started crying. In the middle of his cry he screamed out, "I OK!" and stopped crying.  Totally made me melt.  L kept calling a feather a leaf and would tickle his neck with it and start laughing.  In yesterday's speech therapy session neither of them would talk but once the therapist left, L ran to the window and waved as he said, "Bye D!" Her name is Dana!  So proud of them!  I should also mention that my kids born to a Jersey girl and a guy from Ohio have a pretty strong southern accent.  It's amazing what kids pick up.  I think a lot of it has to do with most of their therapists having southern accents.  Oh my little southern boys!  Some days I want to throw in the towel, but their cuteness takes over and I get all warm and fuzzy on the inside.


Tomorrow we have our FAMM (Fayettville Area Mom of Multiples) Christmas party.  It should be fun.  The boys will be in control of how long we stay.  We've started being able to read them pretty well and know when meltdowns are on the brink.  That's when we quickly pack up and get the hell out of dodge!  It's all about timing with them and keeping them on a schedule.  


Today I was told by someone, "Autism? They don't look Autistic!"  What does Autism look like? Line up 10 people with Autism, they will all have different symptoms.  The woman later said she was hungry.  The smart ass in me said, "Hungry?  You don't look hungry!"  I think she got my point.  

Now I'm off to do dishes, wrangle children (since they're almost done with their snack), and perhaps drink another cup of cold coffee since I never get to drink it while it's hot.  Ah, motherhood!

Tuesday, December 3, 2013

This One is for You SIS!

I was informed this morning by my sister that I haven't written a blog post in a while.  Life just got away from  me.  With traveling and wrangling twinadoes, it slipped my mind.

What a crazy week it's been!  Last week we drove what would normally be a nine hour drive to NJ in THIRTEEN hours!  That's right, 13 hours.  I'm glad everyone is going to see there loved ones for Thanksgiving, but I really wish they didn't leave the same day as us!  Thankfully the boys did really well in the car.  Between the Hubs road rage, and my anxiety, I think the boys were the only sane ones in the car.  Besides screeching, arm flapping and throwing of goldfish the boys did amazing.  The way home only took us 10 hours, but the last two hours got to me and I was ready to jump out of the car.  There's only so long a you can have a screeching G in your ear before you start to lose it. Think about being in a minivan with a loud hyena.  That's my son. ;)

Overall the boys did pretty well in NJ.  We tried to stick to their schedule as much as we could.  The sleeping situation got a little sticky but it worked itself out for the most part.  L and his cousin A formed a special bond.  He loves her so much.  And S and G are like two peas in a pod.  It was so nice to have family around.  The Hubs and I even got to go on a date sans kids!  Nothing fancy. Just sushi and Target. That's a wild night for us!  The boys got a ton of presents from Grandma and Papa and their Aunt and Uncle.  They were very spoiled this week!  Sunday we had family pictures taken.  I think a few came out that I really like.  Once thing my sister and I realized from the photos is we need to go on a diet before A's Bat Mitzvah!  Good Lord!  When did my tush get so big?!?! Needles to say, I was back to my exercise today.

When we got home last night there was a package on the door step from G&L's running buddies!  They sent both of the boys teddy bears, some chocolates and homemade cards. 


The best news of the week...after a year and half of trying to teach G how to eat with a spoon...HE DID IT!  We're so proud of him!!  I'm sure L will be following behind soon.  My boys aren't quitters, that's for sure!!!!

G feeding himself with a spoon for the first time:
L giving his cousin A a HUGE hug:








Friday, November 22, 2013

Ten Things Random People Tell Me and Say About Autism.

Here are some of the gems I've heard over the past two years about Autism.  I never realized how many people have no clue.  

1) They have it because we don't discipline enough
2) Give them Pot Brownies, it will cure them
3) They don't have Autism, they're just shy.
4) Read Jenny McCarthy's Book...she "cured" her son.
5) My 6th cousins wifes, sisters husband's sister has Autism. She's crazy!
6) "Come on boy, snap out of it already."
7) "How do you do it? I would give them up for adoption." That gets a big WTF!
8) God only gave you damaged children because your a sinner and a bad Christian. (Surprise...I'm Jewish!)
9) If you feed them x,y,z it will cure them.
10) What's their special talent?  All people with Autism have a special talent.
11) Are they like Rain Man?

I realize that since we're so open about our journey with twins on the spectrum, we'll hear many opinions from people.  Ones that are supportive, ones from people that just don't know much but want to ask questions and learn (love them!!!<3) and the people that think they know everything and know how to cure Autism and can tell me what caused it. I'm OK with it. The only way to end ignorance is to educate.  Some of our greatest people in history never would have made it, if it were not for breaking down barriers and educating people. We could get angry, about the comments we often hear, and sometimes I do, but I try to redirect it, to educate. 

"I don't think of all the misery, but the beauty that still remains." - Anne Frank

Wednesday, November 20, 2013

One Coffee, Two Coffe, Three Coffee, Four!

Sorry it's been a while since my last entry.  It's been super busy and I'm exhausted by the time the boys go to bed. 

We've had a busy week.  We FINALLY got our van back!!!  Thank goodness!  It'll make getting around with the boys so much easier.  So, what else has been going on?  L was asked not to go back to preschool.  There are no hard feeling. They really tried to to make it work for him, but they just don't have the resources or the funds to be able to help him, and take care of the rest of his class.  Although we understand, and as I said there are no hard feelings, it still stings.  No one wants it to be their child! 

G has hit a bit of regression with both his feedings, his therapy, and his speech.  Hopefully that just means he's working really hard on something else.  They want to redo his EEG to rule out seizures since he gets really floppy and spacey.  Today we go the the Special Needs school in town to get some assessments done and hopefully get the date for their IEP meeting. I'm eager to get things moving and have a plan in place for them.  This momma bear doesn't back down! I want to make sure the boys have everything they need to make it!

The other day my mother told me a story that I want to share here because it really gives me hope. She works with a woman who's nephew has Autism.  He's always liked small things and very intricate things.  He become skilled at fixing watches.  He now works at Tiffany's fixing watches! He likes small spaces, so they gave him a small work space, with a small table and he gets paid to do what he loves, fix watches.  He gets paid, has a pension and the most important thing is, he's happy!  Stories like this give me hope for my boys.  I just thought I would share this here to try to give others the same hope this story gave me. 

I the words of L, "The End!"


Thursday, November 14, 2013

Twenty Dr.'s Walk into a Room.

It's been a few days since I last wrote.  We've had a terrible cold going through this house that just keeps getting passed back and forth through all of us.  When the boys take their nap later I'm going to disinfect everything.  We need to get these germs out of here! 

L had the allergist yesterday who is also his Mastocytosis specialist.  Masto is kind of rare so all of his medical students wanted to come in to check out the "boy with mast."  They were all very nice and respectful.  It's a teaching hospital.  I kind of like it since these students might be his future Dr. one day. I think L secretly liked the extra attention.  He was pick pocketing all of them.  It was pretty funny.  He had an entire collection on pens and id badges going.  They're keeping him on the same meds, but adding an inhaler.  He thinks he has allergy induced asthma.  Fun times!  He fell asleep on the way home from the Dr. so we didn't get naps yesterday.  They did sleep in a little later today so that made me happy! 

After we drop L off at school this morning I'm taking G for a haircut.  He's starting to look a bit like Frankenstein.  A cute one of course!  He HATES hair cuts.  It breaks my heart to take him. He cries, screams and throws himself.  Poor kiddo.  He doesn't like a thing about it! He did pretty well in PT this week but was kind of a loosey goosey.  He didn't do much in ST except for taunt the therapist.  It's OK though, she loves him! L will have ST today at school.  It's so nice that she goes there to work with him.


L has been very into stacking things lately.  Anything he can get his hands on he stacks away.  He gets very frustrated when it falls and will have a meltdown.  I wish he could talk and tell me what upsets him so much.  He tends to have a lot of meltdowns.  I think it partly has to do with his lack of communication skills.  I can't imagine what it feels like to know what you want but not be able to tell anyone.  It has to be frustrating.  G has started dragging up over to what he wants which is awesome.  Maybe L will catch on to it soon. 

Please keep my friend S in your thoughts. Her daughter B has severe Autism and they are having a lot of issues right now.  I know she could use all the extra thoughts and prayers you can spare.  She's an amazing momma to three amazing kids!

Monday, November 11, 2013

It's Just Another Manic Monday!

This weekend went SO much better then last weekend!  Thank goodness, I don't think we could have handled a repeat session of last weekend.  A friend of mine since the fourth grade came to visit!  She hadn't seen the boys in a while.  Her friend W came down here with her.  They kidnapped me on Sunday so I could have a girls day.  It was nice to get out for some girl time but I sure missed my boys!

Saturday L took a bit of a spill off the couch and bit his lip pretty hard.  It was a bleeder.  The hubs told me to go grab a towel, and in a panic I grabbed a beach towel. A beach towel?  He laughed at me and told me to grab some paper towels.  Once the bleeding stopped it wasn't that bad and he was fine.  The mouth always looks worse then it is.  Poor kid was not a happy camper!  He has a little but of a fat lip, but I think he'll live!

We just fed the boys dinner and silly me used the wrong bread for G's sandwich (he will mostly only eat sandwiches).  He gagged just looking at his plate and wouldn't eat anything from his plate.  At least I got him to eat some yogurt.  Poor kid.  Give him something that's not food and he'll eat it up, if it's food, he won't touch it.  One day we'll get you to eat kid, one day.

We just signed up for an awesome program called IR4 (I Run For...).  It matches runners up with people with special needs so they can become buddies.  The runners run for their buddy and dedicate miles to them. It's so amazing and we're honored to be a part of it.  We're very excited to get to know our runners better.  One of them lives in Florida and then other one is in Germany.  If you want to sign a loved one up for it, send me a message and I'll pass along the information for it.

I also want to say thank you to ALL of our Veterans out there, including the Hubbs!  I am so proud of him and everything he has accomplished while serving our country. He is a great daddy, friend, husband and person.  So, thank you to all of our Airmen, Soldiers, Marines, and Sailors.  Thank you to all of the families that serve along side our military.

xoxo

Friday, November 8, 2013

HI!!!

It finally happened, I went into the boys room this morning to get them out of their cribs and L smiled at me and waved and yelled out "HI!!"  We came downstairs, did our regular routine, and I sat down on the couch. He runs up to me again, screamed, "Hi!" as he waved and then climbed up in my lap.  Less then 30 seconds later he jumped back down and and said, "BYE!"  My heart melted!  That was the first time I ever heard him say , "Hi!" and the first time he's ever waved.  I'm so proud of how far he's come.  Later I was changing his diaper and said, "Peyew, Stinky!" He repeated, "Eyew, Inky!"

After all the blood sweat and tears, it's so amazing to see some progress finally. There are day when I question why are we working so hard? Will we ever really get anywhere?  The answer is "YES!!!"  Something as simple as hearing your child say hi, can make your entire day or week.  G has turned into a reading maniac.  The other day we went to Walmart.  I normally try to stay away from Walmart because I can't handle the crowds and not to sound snobby, but some of the people there but we needed to get some things and I knew they had them all there.  So anyway, G walked form the parking lot into the store like a champ.  It took as a while, and he had a few stumbles but he kept on, keeping on.  I put him in the cart, he looked down, and read "Walmart."  As we were walking through the isles, he was reading all the signs.  I know he no comprehension as to what he's reading but it still blows my mind that he can put it together.  I've never been a strong reading and am not one of those people that read for pleasure, so to hear my 2.5 year old read, just completely blows me away.

Although we had some rough days this week, it totally made up for the horrific time we had last weekend.  Now, if we could only get G to keep his clothes and diaper on...

We have a busy weekend coming up!  I have a longtime friend since the 4th grade (that was a looooooooong time ago) coming to visit for the weekend.  I'm looking forward to some much needed girl time!

Wednesday, November 6, 2013

On the Hunt for The Perfect Toy!

I've been looking high and low, far and wide for the perfect toys for G&L.  I've cruised through millions of toy isles, tons of websites and asked numerous friends, but I'm just really having a hard time finding toys appropriate for them.

Why is it so hard to find them toys you ask?  They can't have to many small parts, be too complicated or come in a million pieces.  They can't be certain materials, certain textures, or certain characters.  G will eat just about anything including the drywall.  Gotta love PICA! Wood blocks and mega blocks are pelted at our heads and cardboard blocks don't last more then a day because they are eaten.  They can't be to loud or have to many bright lights.  I've found some websites that have toys catered to kids with special needs, but I can't seem to find any that are perfect for them.  Every time I think I find something I notice something that can pose as a hazard to them.  G just recently got into trucks and cars but have a bunch of those already.  L it just depends on the day.

Other then the hunt for new toys, I've broken up a gazillion toddler fights today.  I really hope one day they are nice to each other and start to like each other just a little bit!


Sunday, November 3, 2013

No Good, Terrible, Rotten Day!!

If I had one word to describe this weekend, it would be TERRIBLE!!  If I could use more then one word it would be Awful, Rotten, No Good, and possibly a few words that aren't child friendly.  Autism showed it's ugly side this weekend, and this momma is exhausted!  Mom and Dad, if you are reading this I am sorry for every terrible thing I ever did, being a parent is not for the faint of heart, especially an Autism parent.  People always say GOD chooses people to be parents of special needs kids.  GOD must have gotten us mixed up with someone else.  I'm pretty sure he meant it for the person on the list above us but with a similar last name. My neighbor down the street is a pretty cool chic.  Maybe it was supposed to be her? Don't get me wrong, I'm grateful for my children, we are blessed to have children when so many can not.  Not a day goes by that I'm not thankful for my tiny humans.  Some day's I just wish our family could be a little bit more ordinary. I don't know who did more of the ugly cry this weekend, L or me.

Being the awesome parents that we are (sarcasm) we decided it would be a great idea to take G&L to the BBQ festival.  We should have known it was a bad idea when as soon as we went up to the ticket line L started to have a melt down.  We figured once we got moving he'd be fine.  We were wrong, boy were we ever wrong.  Crying, screaming and throwing himself ensued.  We got plenty of dirty looks from people.  If I wasn't so concerned about L, I most likely would have given them dirty looks right back. We were lucky we had A and J with us.  A is one of the best friends I've ever had.  She's so non judgmental and always asks questions so she can learn and understand.  I'm going to be so sad when she's goes back to Germany.  A, if your reading this....PLEASE STAY HERE! Even though we don't get to see each other as often as we'd like because of our busy schedules, it gives me the warm fuzzies  just to know she's here.Thankfully once we got everyone loaded back up in the car L calmed down and I think I even heard a few giggles out of him.

This morning G&L were their normal selves; fighting, steeling toys, tackling each other and using me as a jungle gym (it was the hubs day to sleep in).  I've been super tired from this darn cold and the events of the past week that I was counting down til nap time.  They woke up in a good mood, so we thought, "Perfect!  They'll have a great time at G&G's birthday party."  It started out OK, but we didn't last there very long and had to leave.  The boys got way to overstimulated and were starting to melt down.  We ducked out quickly before the evil wrath of G&L swooped through the place.  We would have loved to stay, as the party was in a cute little arts and crafts place for kids.  All the kids were making adorable crafts and laughing and giggling.  G was trying to climb the table and L wouldn't sit.  We came home with no projects in hand.  I enjoyed watching all the kids play and talk to each other.  I was both in awe and terribly jealous.  In awe watching these little ones use their creativity, and jealous that mine wouldn't partake.  I normally let things like this slide and don't let it get to me, but this weekend just wasn't one of those weekends.  All we can pray for is a better week lie ahead.

Tomorrow we restart our journey to conquer the world and educate people about Autism


Friday, November 1, 2013

Pass the Coffee, This Momma is T.I.R.E.D.

I have to start this off by saying how proud I am of my Twinadoes!  Not only did they wear their costumes yesterday, they went trick or treating and actually had FUN!  We only went to about 5 houses before calling it quits.  We didn't want to push it and ruin a good evening.  G walked to his first house and then sat down in their yard.  After that he wanted in his stroller.  L walked the entire time with no meltdowns and didn't beg us to carry him.  SO PROUD!  G got upset when we couldn't go inside everyone's house. They still don't understand the trick or treating thing but they had fun and so did we! Our friend A and her son J and her parents came trick or treating with us.  Her son was a puppy and was so stinking cute!  He went up to the houses and said, "woof woof."  I love that kid! He's so full of personality, just like his momma!

Growing up my parents were always super paranoid about the candy we received on Halloween.  What we were allowed to eat was cut up into tiny pieces to make sure there were no needles, staples, poison, etc hidden in our candy.  As I watched H take a piece of gum that was in a twisty wrapper from the boys trick or treat bag I couldn't help but cringe, just waiting for him to chomp down on a needle or choke from being poisoned.  Thanks Mom and Dad!

Today Speech Therapy went pretty well.  L waved and said "Bye" for the first time!  The ST was using a mirror with G to try to get him to say, "That's me!" Instead he just kept pointing and saying, "That." Hey, I can't complain.  He got half of it.  Any progress is good progress in my book.  Speaking of book, right now G is trying to read to the Goose, one of our dogs.  I wouldn't say she loves the boys but she definitely tolerates them.  Our other dog Penny likes to be outside most of the day, she comes in every now and then for some loving and then goes back out to play.  She likes to watch the neighborhood and stare at the dogs next door through the fence.  Ah, to have the life of a dog.

This weekend we get to go to our friends G&G (another set of twins) second birthday party!  Their momma J is throwing it at a kids art place.  It should be fun. The hubs and I are pretty sure I'll be doing the art project and he'll be trying to keep G&L from destroying the place and trying to eat all the craft supplies. It isn't until we get thrown in a room with nuerotypical kids that we realize just how different ours are.  I'd be lying if we didn't sometime come home from events a little bit sad from time to time.  It's not easy having adults and children alike stare at your child while he lays on the floor screeching and flapping his arms.  To us it's completely normal.  I think people tend to forget everyone has a different normal. 

I leave you with some pictures from Halloween.  Sorry if there are any Michigan haters out there!


Thursday, October 31, 2013

20 Things You Should Know About G&L

1. They both have what is considered to be severe Autism
2. They both have completely different forms of Autism
3. Yes, they are twins.
4.  No, they are not identical (yes I'm sure)
5. Yes, we can tell them apart
6. L is a hoarder.
7. G is a minimalist
8. L is a smuggler
9. G will only snuggle if he's tired and it's on his own terms
10. They both are obsessed with water.
11.  G has Hyperlexia and has started to read
12. L is obsessed with letters and numbers
13. L's favorite activity is jumping
14. G's favorite activity is reading books and pushing L.
15. They may have Autism and SPD but they are amazing.
16. L will beat you with a magnadoodle if you don't write numbers and letter on it over and over for him.
17. G will make you clap anytime he can get hold of your hands.
18. They both like to scare their momma by jumping off the couch.
19. They can't talk yet, but are super smart
20.  They are adorable and all ours!

Wednesday, October 30, 2013

What a long week it's been!

It's been such a long week already and it's only Wednesday. The past few days have been like a whirlwind.  Monday was running from one therapy to the next with a cold mixed in.  Tuesday turned out to be a very long day, which really shouldn't have.  L had school in the morning while G and I ran some errands and then ran to PT, then back to pick up L from school.  The hubs was going to leave work early to help me out with a Dr. appointment, but he couldn't end up leaving.  OK, no biggie, I've done these things on my own more times then I can count.  We were about 45 minutes into our hour long drive when we stopped at a traffic light. Apparently the person behind me didn't think it was a good idea to stop so, she rear ended us.  Thankfully the boys were OK, as well as her children.  I'm pretty sure I need a new bumper and I just ordered new car seats.  Of course it was an accident but with all of our Dr appointments, therapy appointments and all the driving we have to do, it's a HUGE inconvenience.  Like I said though, I'm extremely thankful no one was injured.  Cars can be fixed or replaced but our children can not.  The nice officer ripped part of my bumper off since it was on my tire.  I was NOT missing our appointment!  We got there, late, waited for a while and then she was able to see us.  By the time the boys and I got home, we were beyond exhausted!  Today is PAJAMA DAY!!!

Once we finally make it to our appointment we got the final diagnosis that L has "Classic Autism" and is on the severe end.  We also thought he was mild to moderate.  She thinks he may also have ADHD but doesn't want to diagnose him with that this young.  I'm fine with that.  So now we have two boys with "severe Autism," and two very tired parents!  No we have to figure out how we're going to pay for two kids to be in ABA therapy!!!  I can hear our bank account crying!  They should have ABA grants for families with Autism.  Oh hey I know...how about all insurance companies should have to pay for ABA therapy!  Something that can help so many is way out of reach for a lot of families.  It's pretty sad.

On another note, I have to say how proud I was of the boys when were stuck on the side of the road for over an hour.  They cried at the initial impact, heck I cried, accidents are scary, but they they just hung out while I did silly dances on the side of the highway to keep them laughing.  It could have been a total disaster since they had no naps, and who the heck wants to be stuck on the side of the road for over an hour! I think they handled it better then I did!  Their new car seats should be here tomorrow, the van will hopefully be fixed soon and as for me, I'm counting down til nap time so I can get a nap too!  This momma is beyond exhausted!!  Being an adult sucks!

Saturday, October 26, 2013

The Silence of Speech Therapy.

Yesterday the boys met with one of their ST's, Miss M.  I'm pretty sure you could here crickets in the room.  The boys did not say a peep.  I"m pretty sure someone must have stolen their vocal cords but made sure to return them right before we got home.  I'm always told, "Just wait til they start talking, you'll be begging them to be quiet." I'm sure for parents of kids with talkers that is true, but I have to say, I would give my right arm (I'm a righty ;)) to hear my kids talk or even just respond with a simple yes or no or heck, to even acknowledge our us when we try to talk to them..  The truth is, we don't know if they'll ever talk in full sentences.  It's one of those things that's always taken for granted. It makes me wonder what my life would be like if I didn't have the ability to talk (I'm sure my husband would say peaceful.). My biggest dream right now is that one day I will beg them to be quiet.  Not from screeching and yelling, but from talking my ear off.  I would love to say, "G&L Please stop talking for 5 minutes so mommy can think!!!"  It might happen one day, it might not.  Autism is funny that way.  A lot of people talk about how their kids were completely typical developing and then they woke up one morning and they could no longer speak, that something had just changed.  For us, it was never like that.  They were always developmentally behind, and just haven't caught up.  We were always told while in the NICU that they will catch up by the time they turned two.  Two came, and soon they will be three.  G is at the level of a 12-15 month old and L is at about 18 months.

On a more fun and exciting  note, the great and amazing Cara Lynn (no that's not me) took pictures of the boys last week.  She has such patience for our monkeys.  She's a momma of 4, so she definitely needs some patience.  Anyway, she sent me a sneak peak photo of G yesterday.  My heart melted.  He's such a beautiful little boy.  We're still waiting on L's sneak peak Miss CARA!!! ;)


Thursday, October 24, 2013

The Good, The Bad and the Ugly.

When I started this blog, my friend Sabrina told me I need to talk about the good, the bad and the ugly.  Lord knows there's a lot of all three.  So, I"m taking Sabrina's advice.  So here it go...

The Good:  My kids are ROCKSTARS!  I'm mean like total complete ROCKSTARS!!! They are fighters, they have spunk, they love there momma, they have overcome so many obstacles.  They inspire me to do better, to be a better person, to be a better mother and have made me realize what my purpose in life is.  I remember back in my early 20's when I swore I never wanted to get married, let alone have children.  My how things change. Now I'm happily married with gorgeous, smart, and loving twinadoes!  I'm a lucky girl!

The Bad:  We have some very bad days.  Sometimes I feel like the bad days can out weigh the good day.  When I'm having those days, I just take a look back at how far we've come.  From having little preemies fighting for their life in the NICU to our now strong, handsome 2.5 year olds. What makes the bad? Bad sensory days, days where Autism and all their other medical problems seem all consuming, multiple Dr. appointments and therapy appointments all in one day. Vomiting because of smells or tasting a new food, screeching that can break the sound barrier, not hearing any of your little loves say "momma" or "dadda," hearing rude comments from strangers and even sometimes family members, hearing the words, "Well, Jenny McCarthy cured her son." There's also my favorite from a stranger when we were in the post office while G was in his walker, "You must be a bad Christian for GOD to give you a damaged child." No Lady, YOU are the bad Christian for passing judgement on an innocent child, aren't we all GOD's children?...oh and guess what, I'm JEWISH!!!" She had quite the look of shock on her face.  Just a little side story, when H and I moved to our very southern rural town I went to CVS and asked if they had Chanukah cards.  The sales person said, "What's that?" Our little town has come a long way.  They now carry two Chanukah cards at our local CVS!

The Ugly:  When my child wakes up from his nap covered in poop (such as today) and we have less then 10  minutes to get out the door to make it to an appointment in time that's an hour away.  Did I mention the poop was in his nails, on his face, his paci, the walls, his clothes, the carpet?  EVERYWHERE!!!! The other one often wakes up screaming his head off throwing himself everywhere and throwing everything around him.  The medical bills that keep piling up.  Sure, we have insurance but it doesn't cover everything.  Between doctors, therapists, medical equipment, duct tape to keep diapers on, etc, we are up to our eyeballs in bills.  If the hubs were to ever lose his job, we'd have to move back to NJ and live with my parents.  That would be one crowded little house!  At least we would have built in babysitters.

So, there you have it.  The good, the bad and the ugly.  Of course it changes daily.  I'm not one to have a big whining fest, but this is just a glimpse of our lives.  Even with the ugly, we still are very blessed to have what we do have.  Like I said earlier, my children are ROCKSTARS!  G is 2.5 and can read words and L can count to a gazillion and sing the alphabet. He even wakes up in the middle of the night sometimes and yells out the entire alphabet and goes back to sleep. I"m pretty sure these boys of mine have a million things going on in their minds and the hubs and I need to help them get it out.  We laugh, we cry, we make fun of ourselves, and from time to time our kids (not in a mean way, of course).  As I once said in another post, our family can best be described as beautiful chaos.  I'm sure there are many others going through what we go through, and a lot more, just remember it's all for a reason, it's for those beautiful little babies (yes, even when they're 50 they will still be my babies).  We our their voice.

Tuesday, October 22, 2013

Halloween must have come early!

I think Halloween has decided to arrive early this year.  That's the only reason I can come up with as to why my children are acting possessed today.  Of course L was a prefect angel at school today.  Before and after he was a holy terror!  I'm pretty sure a demon has taken over his body.  On a normal day he gives us a run for our money, but today seems to be particularly worse.  Hopefully after his nap, he'll be back to himself.  G is also acting off today.  I think he's super tired.  We went for a long walk while L was in school today and then he played on the playground for a little bit and then had PT.  PT always wears him out.  All I know is, I hope they both feel refreshed after their nap, or this momma may get some more grey hairs this afternoon.  What happened to my sweet little newborns?!?!  Oh, yeah.  They became toddlers!

L has his Dr. to check on his Masto tomorrow.  I think they're going to do some allergy tests to see if he's improved with anything.  I sure hope so! G will have to come along for the ride and neither of them will be happy about it!  Hopefully it'll be quick and we won't have to wait to long.  G's new braces just came in!  They're downgrading him to the SMO's to see how he does with them.  They go right above his ankles.  Previously he had the AFO's that go up to right below the knee.  They think the AFO's were giving him too much support, so we'll see if the SMO's give him too little.  It's so hard to find a happy medium.

After searching for a babysitter for weeks, we finally found one!  The hubs and I will get to go out!  We're going to a Halloween party!  We haven't been able to attend one since the boys were born, and we LOVE Halloween!  We're going at the Bobbits!  You know, Lorraina Bobbit and her ex husband?  It's far off from our Flintones costume from years past. It'll be fun!  I still have to buy everything to make our costumes.  I should probably do that soon!

I'm a little worried about how the boys will handle Halloween and people walking around in costumes.  I think we might take them to a few neighbors houses and then take them back home. They get scared easily and don't understand that it's just people dressed up. 

Aaaaaaaand.....just because I'm reminiscing about their sweet newborn stage and before Autism became such a huge part of our lives.....here are my sweet babies <3



Sunday, October 20, 2013

Doctors and Pumpkins Oh My!

What a crazy few days it's been!  We are all exhausted!  Friday we had our appointment with the geneticist.  We waited 2.5 hours to see the Dr!!!  Insane!  Every time we go to see her, it's such a long wait.  It's not easy with two toddlers!  The good news, they ruled out a lot of bad things and G doesn't have any genes for cancer, heart decease  etc.  The bad news, we still don't know much.  He came back with two other chromosome mutations, but they don't know much about the other deletions so it doesn't do us any good.  They also found some chromosome mutations in L so they want to follow him too.  They also entered us in a clinical trial.  This way, as they learn more about genetics, they might find out if the mutations mean anything as far as their diagnosis.  After we left the geneticist we stopped to get G's new ride!  His wheel chair stroller is finally in! It looks super comfy and seems to like it. 
Yesterday we went to the pumpkin patch with my MoM (Mom of Multiples group). G&L were pretty overwhelmed, but overall I think they did pretty well.  Towards the end they were exhausted and ready to get out of there.  I'm not sure who was more tired though, them or us. It was pretty exciting since this was the first year that G was actually able to walk in the patch.  They were both having fun exploring the pumpkins.  The uneven ground made it a little hard for G to walk but he just kept picking himself pack up again.  L who is normally a runner, stayed right by our side.  I think he was in sensory overload so he wanted to stay near us, as he kept wanting to be held. Here's G&L wandering around the pumpkins patch.

I think today we're going to be kind of low key after such a busy weekend.  We're meeting up with the lovely C later to take some pictures at the park.  I'm hoping the boys will be in a good mood for her!  Normally she has to run after them like the paparazzi.


Thursday, October 17, 2013

The hug of all hugs!

There I was, dropping L off at preschool.  I went to give him his usual hug and kiss, and he actually hugged me back.  It wasn't a holding on for dear life you better not leave me hear type hug. It was more of a "here's a hug momma, I'm going to school now."  It was pretty freaking awesome! The teacher said he did really well today and didn't have any meltdowns.  I love when I get those reports! He's come such a long way since the first day of school.  He's still not participating in everything but we got over a huge hurdle, him being there for more then 45 minutes. Ah, sweet progress!

While L was at school, G and I stopped at the grocery store.  For the first time ever he walked form the car up to the store!  He did it without falling, throwing himself on the ground to lay on his back or just sitting in the middle of the parking lot. He had a smile from ear to ear just looking around. I had to keep getting his attention back because he kept trying to go in the wrong direction, but he did it!  If it wouldn't have looked so strange I wouldn have done some cartwheels and thrown pink glitter everywhere to celebrate. Once we got in the store, he sat in the buggy while screaming out the numbers of all the isles.  I have some pretty cool kids!  An older woman came up to him to say hi and he started screeching and flapping.  The woman got excited saying, "Wow! He really likes me!" Um, that's it lady...that or your in his comfort zone.

L's speech therapist is trying a new approach with him.  We aren't getting very far with his speech. His obsession for letters is holding him back from trying to say words.  Hopefully it works!  G is still scream "HEP HEP (help, help)!!" for everything.  L stole his goldfish during snack time and I hear a cute little voice scream, "HEP HEP!!"  Momma to the rescue.  The goldfish thief was less then amused that I took the goldfish back. I think L was a hoarder in another life.

We got a call today that G's wheelchair stroller is finally in!  I'm so excited!  Now he can be comfy and we can have piece of mind that he isn't going to throw himself overboard. We have a busy day tomorrow!  We get the results back from the geneticist and then on he way home we get to pick up G's stroller!  

Tuesday, October 15, 2013

Fighting Toddlers....Not for the faint of heart.

Attention G&L, the couches are not for jumping on, throwing yourselves off of,  rolling off of or pushing each other into them.  They are to sit on, nicely ;)  I'm pretty sure no toddler has ever agreed with that!  The only thing that really scares us about it is that they have no sense of space or their surroundings.  There has been a lot of couch accidents as of late.  I've even pondered just getting rid of all the furniture! 

It's been a slow day here except for some PT.  L's school had a field trip today but I kept him home.  I feel bad keeping him home but I know it would have been one trigger after another for him.  It also would have been hard for me since I would have to bring G with me and running after both of them solo in a pumpkin patch is not my idea of fun.  We're taking the boys this weekend so they won't be missing out on it.  I"m really excited that this year G can walk and can actually enjoy it more then just sitting in his stroller.  The years before he had a walker.  Though still unsteady he's walking with out an aid so he can roam the pumpkin patch!  I'll have my camera ready!

G did really well in PT today!  SO proud of him!  They're working on stairs which is not easy for him.  He has weakness on one side making it hard to lift his leg all the way up to climb stairs.  He's rocking it though!  Six months ago we had blood tests taken by our geneticist to do a Whole Genome Sequencing and Mitochondrial testing.  Right now we deal with microdeltion 15q11.2.  The geneticist is thinking there is also something else, hence the extensive tests.  Well, we finally get the results back this Friday! It's kind of scary because it might tell us things about any of us that we might not want to know. This test is controversial because some Dr's feel, how much is too much knowledge.  While I kind of agree with that, if we can find something out that might help the boys, I'm all for it!

The boys have been fighting ALL DAY! Toddlers are no joke!  G&L both have very strong personalities.  G is much more laid back but has definitely started standing his ground.  L isn't too happy about this!  Through all of their chaos today, I managed to get my work out in before night time!  Not to bad!

Sunday, October 13, 2013

Walk/Run for Autism

Yesterday was the Walk/Run for Autism!  Things went off without a hitch.  Although it was very early, we dragged the boys out of bed (of course it was the one day they slept late, today they were up at 4:30am), got them ready and headed out the door to meet up with the rest of our team.  There was an amazing turn out of over 3500 people and over a quarter million dollars was raised for the North Carolina Autism Society.  As soon as you walked on the scene you could feel a scene of community.  All of these people were there for one thing, to support people with Autism.  Everyone had smiles and were cheering for one another as they crossed the finish line.  We met some wonderful families there.  One thing I do have to say is, next year we need to step up our games on our shirts!  We had shirts made, but some people has really awesome team shirts!  I'm already planning!






In other news, it's only 8:15 am and the boys have been up for three hours and are driving this momma insane!  The hubs is sleeping and I'm insanely jealous!

Friday, October 11, 2013

Ode to the Ugly Cry

What a day, what a day!  The boys were in rare form today.  By 7:30am I was ready to put up my flag and scream, "I surrender!"  I may or may not have done the ugly cry on our drive to speech therapy.  I was SO tired this morning, the boys were grouchy and I had enough! Luckily by the time we got to ST I pulled myself together and put on my smile. It was just a rough, rough day.  Luckily I got an hour to myself this afternoon.  The hubs was home, and I just needed a break.  That one hour did a world of good.

I've seen a question asked on message boards about Autism and other disabilities that always has me thinking.  If you could make your child a typical child, would you change who they are?"  A lot of parents answer, "No."  The thinking is that this is how GOD made their child, and they wouldn't change them for the world.  I have to be honest, I love my children with all of my heart and would die for them, BUT if I could take away their Autism and other disabilities that they have, would I? YES! My children are amazing, wonderful and beautiful and I would not trade them in for anything but if I could take away all of their issues so they would never have to suffer, of course I would!  What parent doesn't dream of their child becoming a doctor, lawyer, teacher, fireman, etc.  Sure, it's possible some with Autism achieve that goal. but for others it's not reality.  Dealing with severe Autism makes you worry about their future.  Although in the moment we try to make it day to day, it's hard not to think about what happens 30-40 years from now. What happens when the hubs and I are no longer here?  Who will be here to help our babies and guide them?  Will they be able to function and be independent one day? Will they have to live in a group home?  Will they live with my niece and nephew (please S&A!!)?I wish we had a crystal ball and could see into the future.

I'm always told by friends that I handle everything with such grace and determination. I'm often asked how we're always smiling and laughing when we have so much going on in our lives. Of course there are times when I do the ugly cry, want to lay in bed all day, put up my flag to surrender and sometimes wonder why I didn't start getting gray hair until after we had the boys, but our attitude towards everything is a choice. I've learned it's OK to have bad day, it's OK to need to do the ugly cry from time to time, heck, it's even OK to have to down a bottle of wine now. When it comes down to it,  at the end of the day we need to  pick our selves up, put on a smile and enjoy life and our amazing boys.  After all, we need them just as much as they need us.

Thursday, October 10, 2013

I'm way to young to be this damn old!

It's been a busy couple of days!  Yesterday the boys were a mess for some reason.  G face dived off the cough.  He has quite the swollen nose and a bit of a bruise.  Of course he didn't learn his lesson and dove off the couch again a few hours later. I think he was trying out for a new Olympic sport.  L also fell off the couch.  He cried for a few minutes and was fine.  What the heck boys?!?!?  Couch diving is NOT a sport, I repeat, it is not a sport!  I"m pretty sure they never got the memo. 

Yesterday we had the fire pit going with our good friends A&M.  They're here visiting from Germany.  I can not be any happier that they are here.  They used to live 5 minuets away and A and I would spend just about every day together with all of our kids.  It was always so nice to have some one so close by.  We're very different but very alike at the same time.  She's a very non judgey mom.  Our parenting style is completely different, but theirs no judging like there often is with all these mommy wars going on.  We're all just doing what we need to do to survive.  So, back to the fire pit.  I'm not a smoker but I feel like I smoked 10 packs of cigarettes last night from all the smoke form the fire pit.  I don't know how smikers do it.  My lungs and throat hurt! I washed my hair and I still smell like smoke.  I'm so not a wilderness girl!

On another note, I've gotten way to old to stay up late and wake up early!  How can I be this old?  Aren't I still in my 20's?  Oh wait, that ship sailed a while ago! Gone are the days of staying up til 4am and waking up at 6am to go to work and be fully functioning.  How did I ever do that?  Now I have two little boys to wrangle, so this momma needs her sleep!

I have to drop L off at school soon.  Here's hoping to a good day at school!  We're trying to decide if we should pull him out when he turns three and go into the same program G will start.  I see pro's and con's for him.  He's much higher functioning then G, but I'm really not sure if he can sit still in a traditional prek.  Although he tolerates the school he's in now, he's not really getting the benefits of being in school.  I know, I know, he's only 2.5!

In other news, G now says hep (help)! any time he needs anything!  It's pretty awesome! Some days I feel like all this therapy and hard work we do with the boys makes no difference, then a see a tiny bit of improvement or they catch onto something that we've been working on for months, and it all seems worth it.  I'm often told the boys are lucky to have me, I feel it's the opposite, I'm lucky to have them.

Tuesday, October 8, 2013

Bebe Rain and Snuggling Firemen!

"Bebe Rain!" screamed G at his PT as she was making him work really hard.  We figured out he was saying, "Bye Bye Rain(her name is Loraine)!"  We figured out what he really meant when he kept dragging her to the door and saying, "Bebe Rain!"  We were so excited!  He's never really talked let alone put two words together!  It was pretty awesome!  Now, if we can only get him to say momma!  G worked really hard in PT today!  Goodbye AFO's (the braces that go up to his knees) and hello SMO's (braces that go just past his ankles)!!!  Although the PT thinks he may need his AFO's back one day, they're supporting him too much right now and isn't allowing him to try to strengthen on his own.  He's developed this weird hunched over stance (kind of like an ogre?) and we're hoping by shortening his braces he'll have to rely on himself more. It's worth a shot!  The new braces should be here in a week or two. 

Today at Preschool the local firemen came to talk to all the classes.  They didn't get to go on the trucks since it's so wet out today.  The fireman who was talking to L's class put all his gear on so the kids would know not to be scared.  L wasn't scared, he decided to snuggle the fireman!  Maybe he thought it was his Uncle who is a fireman? He'll snuggle just about anyone who crosses path.  A far cry from the boy who used to be terrified of strangers.  He also got his first accident report sent home.  He was hugging one of his girlfriends and they both fell over.  He smacked his ear on the corner of a wood chair.  I think he'll get to keep his ear, no amputation needed.  Just TLC.

Today has been a high stimming day in G&L's world!  Lots of spinning, flapping, screeching, finger crossing and bouncing....just a few more hours til bed time!

Monday, October 7, 2013

Beautiful Chaos

Four appointments and one to go!  This momma is T-I-R-E-D!  I"m pretty sure if there was a sea of coffee you would find me swimming in it was a HUGE straw coming out of my mouth and the coffee sea would quickly disappear.   The hubs stayed home today to help me wrangle the Twinadoes for appointments.  Thank goodness he was there to help.  It was also a monsoon here this morning so, of course I made him drive. I was hoping if I closed my eyes tight enough I could pretend then rain was really a waterfall and I was on some exotic island.  No such luck. It's hard to imagine being on an island when you hear Elmo blasting in the background.

I've sat down to write this few times but every time I do, the toddler version of the WWE ensues.  What does any good mom do when that happens?  Turn on Sesame St.  Hey, did I  mention I'm tired today?  While I was waiting with L to see his Behavioral Psychologist, I met a nice woman who also has twins on the spectrum.  I've met people with twins who have one on the spectrum, but never both.  It was nice to talk to someone who's been there done that. I should have gotten her name.  We go back to the Behavioral Psychologist  at the end of the month so she can give us some more recommendations for L.  His issues are a bit different then G's so they will need different types of strategies.

Someone asked me the other day what it's like to have Twinadoes with Autism.  I wasn't really sure how to answer but to tell them it's beautiful chaos, which is how I like to describe it.  Beautiful, because my children are beautiful and chaos because well, they are toddlers and they both have special needs. 

Here are the top ten things that would describe our house on any given day:
10) A HOT MESS
9) Lots of shrieking
8) Lots of snuggles
7) Chaos, chaos, chaos
6)Laundry everywhere
5) Therapists in and out of the house
4) Lots of spinning and head banging
5) Lots of giggles and laughter
4) Lots of fighting between Twinadoes
3) Lots of dog hair  (Don't wear black at our house!)
2)Did I mention Chaos?
1) LOVE, lots and lots of  LOVE!

Saturday, October 5, 2013

A house full of sickies...

I'm pretty sure this dang cold has hit me the hardest.  The boys seem to have recouped except for a little cough and the hubs only had it for a day or two.  I on the other hand feel like I've been hit my a truck going full speed.  Just think, it was only last week I thought I was in an Aerosmith video driving down the back country roads to the land of the free...the shopping outlets!

The poop bandit struck again yesterday. This time as I was making G&L lunch.  A flying ball of poop was launched at me.  For a second I thought I was at a monkey exhibit at the zoo.  Nope, just my house.I guess G is destined to wear the outfit of shame while we're in the house and we'll have to get him dressed every time we have to go somewhere.  Ah, the joys of parenthood. 

I got to sleep in late today!  Instead of sleeping I caught up on TV shows and painted my nails. Now that it's the middle of the afternoon, I'm thinking that was a bad idea and perhaps I should have actually slept.  Yaaaaaaawn!  Hello dear friend, coffee!

The boys rocked therapy yesterday!  L said his first sentence!!!  "Ooooooh, It's dark!"  While playing with the lights.  I'm still waiting to hear momma!  I think he's holding out on me!  G now ooooo's for mooooo and has tried his hand at meow and "I" for "hi!".  I'm so proud of them!  It's the little things in life.  Who knew that one day I would be so excited to hear someone moo at me!  In the past I may have turned around and slapped a mooooing passer byer, but now, moooo away dear child, moooo away.


Thursday, October 3, 2013

Are they Twinadoe's or Wild Bulls?

I would just like to say, that getting blood taken from a toddler is like trying to hold down a wild bull.  For a kid that's "low tone," he is sure as strong as a wild bull!  I took G to the pedi today to have him checked out.  Someone suggested that the poop snacking might be from low iron.  They did a finger prick, and surprise.  It's low. Off to the hospital for more blood work. The pedi wants a full panel done to see if there are any other problems causing it.  I'm hoping and praying it just from his poor diet.  I can't imagine crackers, cream cheese, soy nut butter and grapes contain too much iron.  He won't drink pediasure or take vitamins so fingers crossed, that's the problem and we can work on fixing it.  This kid has been through so much already!  If only he would eat ice cream I would take him out for a treat.  The pedi office has a new Dr. who we saw today.  I was pretty excited when she actually knew about his G's chromosome deletion.  Normally I have to school the new Dr.'s on it. 

L did awesome at school today!  He was even able to do the art project today!  I was so happy to open up his folder and see an art project!  Normally he freaks out when they try to get him to do it, but I guess today he was on board!  My favorite part is when I go to pick him up and he comes running at me with a huge smile. He's a ham!!!    It's much better then the crying we had the first month. L's new favorite pass time is standing in front of the Goose (one of our dogs, her real name is Lucy, but we call her Goose), with his mouth wide open and letting her lick the inside of his mouth.  Extremely gross and cute all at once. Aren't most toddlers?

All four of us are sick.  It all started with L. Ah, the joys of preschool.

Our Autism walk is in a little over a week!  I'm overly excited for it.  I didn't raise as much money as I would like but there is still some time left.  We did have cute shirts made! 

Wednesday, October 2, 2013

Early morning life lesson.

I just learned a very important lesson.  While making a protien shake, make sure the lid is on tight or it will go flying all over the kitchen.  WHOOPS!  They boys thought it was hysterical.  Me, not so much.  Good thing I just did laundry so I have another shirt to change into! I started a new health kick.  I used to be in pretty decent shape and jogged about 5 miles a day.  Then I got married, then I did fertility treatments, and then I had twins which put me on months of bed rest and in and out of the hospital. Now here I am today and I need to get healthy for myself, and for my boys.  If I'm not here for a really long time to take care of them, who will?

Yesterday G got reevaluated for his PT.  They do a reevaluation every 6 months or so.  I was told he went from very poor to poor.  It kind of made me giggle.  It's not funny that he's only had a slight improvement, but very poor to poor? I think it should be worded differently or put on a number scale.  I guess he went from all 0's to a few 1's on the Peabody test. I'll take any progress but they should change what it's called!  The Peabody tests is used to show development so I feel like when the words very poor are used it makes parents feel kind of hopeless.  Maybe they should do it by colors? Hot Pink could be Excellent and Brown could be very poor? Just a thought. I need to write to these Peabody people and suggest my new color code! ;)

L did pretty well at Preschool yesterday.  It kind of makes me sad that he rarely comes home with art projects. He has a really hard time with getting his hands dirty and really has no interest in group activities.  It makes me sad for selfish reasons.  What momma doesn't want to hang up their kids art work?  I've been working on coloring with them at home.  L loves it, G hates it.  He doesn't even want to hold the marker.  We can't use crayons because G likes to snack on them.  I'm sure the occasional bit of a crayon won't kill him, but I'm pretty sure if I turned my head for a second he would eat an entire box of crayons...and love every second of it.  The hubs had to patch up a spot of drywall over the weekend that G has been snacking on.  He also tries to pick little pieces of wood out of screw holes and eat that too.  Give the kid a piece of cheese and he'll act like you're trying to kill him, give him some drywall and he's as happy as can be. L is getting a bit better with food and is more willing to try new things.  I sometimes wonder if food therapy is worth it, or if it will just take time and maturity?  Who knows?  I sure don't!  For now we'll stick with it and hope for some progress.

The boys had a cold earlier in the week and now the hubs and I were lucky enough to have them share it with it.  How come when kids get a cold, they act like nothing is wrong, but we get a cold and we feel like death has come over us?  Ah the joys of getting old.  We have nothing huge planned for today.  I'm sure we'll go play in the backyard at some point and maybe go for a walk.  Today is therapy free Wednesday! WHOOT WHOOT!

Monday, September 30, 2013

It's a 50/50 kind of day.

We had one of our early morning trips to Duke this morning for OT and Feeding therapy.  G did really great in OT today!  He was a rock star.  Don't worry, I have pictures to share!  His favorite thing about OT is the lycra swing and the ball pit.  Heck, who doesn't love a good ball pit?  I often stare at it wondering what they would do if I just jumped in there and buried myself.  G tried an itty bitty piece of turkey bacon today.  After he stared at it and gagged for 30 minutes he tried a microscopic piece on a cracker mixed with some cream cheese.  I'm pretty sure he wasn't happy about it but he might have been homing the FT would leave him alone if he would eat it.  L touched sand for the first time today in OT without having a major melt down!!!  He even went back to it a few times to check it out again.  SUCCESS!

So, after OT was over, we had to rush and drive an hour home to meet the ST at the house.  They both have ST twice a week. Today was just G's turn.  He did AMAZING!  He's never said so much in his life!  He said cat and ice!  Ok, so it was only two words, but that's more then he's ever said in his life!  Still waiting to hear momma...maybe one day.  Have I ever mentioned  how lucky we are to have our ST.  She is amazing and absolutely loves my kids!  She's a momma herself. Her kids are lucky to have such an amazing momma.  She started going to L's preschool to help him transition since he was having a rough time.  She goes way above and beyond.

Why a 50/50 day if all these great things happened?  There I was getting the boys snacks ready when they got up from their nap, I glance over and the poop bandit struck again.  I guess G couldn't wait for his snack since once again he was munching on poop.  We do clothe diapers, duct tape, onesies, backwards pajamas and nothing works.  This kid is like a poop Houdini!  He hates wearing clothes and normally walks around pantless.  If he wants to be a streaker, more power to him, but FOR THE LOVE OF BABIES...STOP EATING POOP!!!  As I'm running around trying to clean him up and scrape poop out of his nails he was just laying there laughing.  Laughing that he ate it again? Laughing at my reaction?  Laughing just to laugh? Who knows.  Poop can be funny kid...just not when you eat it!                                                       

                                                   Above:G  Below: L
                               Above: G after he finally ate his turkey bacon cracker

Sunday, September 29, 2013

Sweet Freedom! Oh wait...

Today I had a kid free day and went shopping with my friend JN.  We've been friends since 6th grade and we LOVE shopping together.  She stops me from spending so much and I make her spend more.  It's really the perfect balance.  It may appear that I spend a lot of time away from my kids, but I really don't.  It's a rare occasion that I ever go out without them.  The hubs is away a lot for work so when he's here, I try to get a break.

So, there I was driving on some back country roads with the sweet smell of freedom.  I was blasting my music, and it wasn't even Sesame Street or Word World!!  For a second I swear I was in a convertible with may hands in the air just like in that old Aerosmith video with Alisha Silverstone. Wow, I just aged myself.  Anyway, so there I was getting lost in the moment and then I looked around and realized, oh yeah,  I'm in my minivan... with two strollers in the back... and a handicap sign hanging from my rear view mirror. Ooooooh, that's right I'm just a mom on the run!  Once I got back to reality I started thinking about all the things I have to do for the week, and the thoughts of Autism jumped back in my head.  I feel like I can't really get away from it, well, except for when I think I'm Alisha Silverstone in that Aerosmith video.

Autism seems to follow me where ever I go.  I don't get a break from it.  I may get a break now and then from G&L, but I am constantly thinking of things I can do for them.  Did I miss something? Did they get Autism and SPD because I watched Sons of Anarchy one day while they were sleeping in there swings when they were three months old?  Was it the fertility drugs? That they are preemies?  That I love pink sparkles too much?  We'll never know.  Oh, there is that chromosome deletion that they think is part of the cause.  There are just so many questions that are unanswered and we'll never know the answers too.  I've read a ton of books, some good, some bad and some that I just think need to be burned. In either case, this is our life.  Don't get me wrong. I love our life. I love my kids, I love my husband and I love my dogs.  I wouldn't change this life for anything, I just wish that my brain could shut off now and then.

So in the midst of all the crazy things that swirl around in my brain, G tried to kiss me for the first time today!  It was the best thing ever.  He was either trying to kiss me or bite my face off, but I'm going with he tried to kiss me.  The kids who hates to snuggle and only wants to be held or touched on his terms, tried to kiss me!  I think it's enough to get us through the week ahead.  Tomorrow is a double header of OT and ST and then hopefully a nice long nap!

Saturday, September 28, 2013

Three cheers to Saturday!

Oh what a lovely Saturday thanks to the awesome TC, otherwise known as our new babysitter.  The boys seemed to love her and took to her really quickly.  It's so nice to have a sitter you can trust.  She's the cousin of our original sitter LC, who the boys adore!  It must be something with their family.  We don't get to go out without the boys often so it was so nice to get out just the hubs and I!

We were able to go to our favorite restaurant in Raleigh.  I missed my sushi!!!  We walked around the Flea Market afterwards but I felt naked without pushing a double stroller with screaming kids with me.  I can only count on one hand how many times the hubs and I have gone anywhere without the boys in the last 2.5 years.  Not many are willing to take on watching the Twinadoes. Of course our date day had to end with a trip to Target to get diapers and wipes.  Whats a trip out of the house without stopping at Target?!?!?  I'm convinced there is no way to walk out of there without at least spending $100.  I'm sure I would have spent much more if the hubs wasn't there.  We also may, or may not have spent way to much money on buying the dogs all natural dog treats.  They better eat them!

Right now G&L are winding down for the night.  Soon it'll be bed time rituals.  In the mean time L is attacking the hubs and G is balancing a Sit - N- Spin toy with his legs, over his head.  He's always seemed to do everything with his feet.  He never held bottles with his hands, always with his feet.  Occasionally he'll drop something on his head, but it never stops him from doing it. These boys love anything that spins!  They can spend hours watching spinning balls, wheels, toys, themselves and especially things that normally wouldn't be something you would think about trying to make spin.  I think they could win an award if spinning was in the Olympics. 

This momma has to go get the boys ready for bed, cook dinner for the hubs and do some laundry.  Aaaaaaaaand....date day over, back to my normal domesticated life.
Here we are before leaving the driveway, on our way to freedom for 5 hours!  By the time we were on our way home I couldn't wait to see my monkeys!!