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: