The Day I Realized I Can't Do It On My Own

I think as parents, regardless if your children have Autism or some other disability, you have that one point where you think you just can't go on for another minute.  I"m currently the VP of our local Mom of Multiples group, which has allowed me to meet so many strong, amazing women, that I otherwise may not have met.  There are many members in our group who serve in the military or have a spouse in the military, leaving us to often running the household on our own very often.

While talking to a friend this evening from the multiples group, we were sharing things we do to make it through.  I used to be the, "No, I don't want or need any help," person. Now I'm the, "YES!! Please help me person!"  I've finally started to admit to others that I have a secret.  Reguardless what others think, I am not super woman.  I'm damn tired.  G&L hardly sleep, they scream yell, meltdown and make me question my sanity.  I remembered the first time I realized I need to say, "Yes, I'll take your help."

Last summer I signed the boys up for a gymnastics class with some other friends.  I don't know what made me think this would be the best thing ever.  I have to say it was 99% awful!  L would run in circles and then go back to screaming, sometimes crying, G would either hide in a tunnel somewhere or hang on the door trying to leave.  Then there was that one day.  We got there a little early (big mistake) the boys didn't and still don't understand the concept of waiting, so they were screaming and crying and hitting me because I wouldn't let them run a muck while the other class was still going on.  I literately sat down in the middle of the gym, in front of complete strangers and just started crying. I couldn't keep it in. I tried.  The boys were just diagnosed with Autism, the hubs was deployed and I just wanted to hit the pause button.  What started out as teary eyes, turned into the ugly cry right there, in front of a bunch of moms and two years olds that I didn't know.  One sweet mom came up to me and said, "It's OK, we all have these days."  It was that day, that I decided if someone asks me if I need help, and I do, I will swallow my pride and accept it.  Once I made that deal with myself things got a little easier.  Autism is a Bitch. If people want to help to make our lives a little better or just offer some kind words, who am I to stop them.  I sometimes still say, "No Thank You" but then regret it minutes later while I have two children throwing themselves on the sidewalk having a meltdown.  Today a friend picked up some diapers for me.  Although it may not seem huge to some, G&L were having a horrible stimming day today, and the thought of bringing them in public to get stared at and play 20 questions with strangers wasn't my idea of fun. A saved the day by bring diapers and goldfish!

My point is, as parents I think we often want everyone to think we can do it all, that we are unstoppable.  Well, I'll tell you what this mama, knows she can't do it all alone, but she can do it with the help of her awesome friends.

This Showed Up in My Time Hop Today.

I had forgotten all about the first time I read the poem, "Welcome To Holland."  It describes so well what I was feeling at the time, and still am.  I thought I would share it here.




Welcome to Holland
Written by Emily Perl Kingsley (in 1987)

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to imagine how it would feel.
It is like this...

When you're going to have a baby, it is like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The Gondolas of Venice. You may learn some handy phrases in Italian. It is all very exciting.

After months of anticipation, the day finally arrives. You pack your bag and off you go. Several hours later the plane lands. The stewardess comes in and says, 'Welcome to Holland'. 'Holland? ' you say. 'What do you mean Holland? I signed up for Italy! ! ! I am supposed to be in Italy. All my life I have dreamed of going to Italy! '.

But there has been a change in flight plan, they have landed in Holland and there you must stay. The important thing is that they have not taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It is just a different place.

So you must go out and buy new guidebooks. And you must learn a new language. And you will meet a whole new group of people you would never have met before. It is just a different place. It's slower paced than Italy. It's less flashy than Italy. But after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, and Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that is where I was supposed to go, That's where I had planned'.

And the pain of that will never, ever go away, because the loss of that dream is a very significant loss, but if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Walk For Autism - Team Thompson Twins

Autism Statistics:

 Every 11 minutes someone is diagnosed with some form of Autism. 1 in 54 boys are diagnosed with Autism while 1 in 252 girls are diagnosed in the United States. Autism affects over 2 million individuals in the U.S. and tens of millions worldwide. Autism is the fastest-growing serious developmental disability in the U.S. and costs a family $60,000 a year on average. G&L are just two people out of many that are affected with Autism. 

 How can you help? By raising awareness, educate people and be proactive. No matter how prepared you are as a parent, no one ever thinks their child will have Autism. Please help us raise awareness and help in our fight to educate people about Autism and most importantly to help us fight for G&L. Educate! Donate! Join our Team! Just click on the Link below!


http://www.walknowforautismspeaks.org/faf/donorReg/donorPledge.asp?ievent=1084973&lis=0&kntae1084973=C48167EBF9AC4B999BB0628E24CE57EC&supId=400768536&teamName=Thompson%2BTwins

Not a day goes by...

Not a day goes by, that the word, "Autism" isn't always in my head.  I think about it while I'm grocery shopping, going to bed, watching movies, talking to people about other things, etc.  I think there was an occasion maybe a few months ago at a girls night out that I forgot for a minute.  Then, it happened...everyone started talking about their "typical" kids.  I love all their kids, I love them like they were my own, but I get jealous!

Why do I get jealous?  I get jealous at the funny things your kids say, the games they play, the crafts they make and when I hear them call you momma or dadda. I get jelous that while we're running from therapy appointments to Dr. appointments your going on play dates and shopping. I get jealous that all your kids can go to any preschool you choose, while we have to fight to get two spots in a special needs school...the only one in the county.  I'm jealous of your family vacations that we may never be able to take. Have I mentioned that I'm jealous that your kids can eat in a restaurant and eat real food and not throw it at people? G&L were delayed, but that was OK.  The specialist kept telling us they would catch up by the time they were two like most preemies.  We just kept telling ourselves that two was the magic number. Oh, I guess I need to throw in, that even though I get jealous of friends, I still love them. <3

As two was approaching we knew for sure our adorable little men did not catch up.  In fact, we were telling the Dr.'s when they were 1, that we knew they had Autism.  We were always told, they just have delays.  18 months came approached, and they grew more concered.  We hit the big two!  Suddenly, MRI's were ordered, blood tests were taken, more specialist were introduced we learned about genetics and chromosomes and epilepsy and Autism and just about everything else under the son.

I now walk around with a medical notebook about the size of two old school encyclopedia's that contains test results, evaluations, medical papers, research, studies done in other countries and perhaps some coffee stains and cookie crumbs (all that research can make a girl sleepy and hungry).

In just a few short weeks my babies are turning three!  I can already see what amazing little boys they are becoming.  They work so hard and they don't let anything hold them back. Of course they get tired and cranky and have day that they just don't want to do anything with therapy, but everyone has days like that.  Especially toddlers.  I still have big dreams for them.  A friend asked what could I see them being when they grow up.  Even with their disabilities I can see G being and Engineer.  He loves to inspect things close up, and figure out how they work.  Show this kid some gears and he'll be happy for hours.  I can see L being a math genius!  This kid loves numbers, math, watches, anything with numbers.  He must have gotten that from his dad.   The hubs is the one who got me through algebra.  Without him, I may have never graduated from college!

So, the gist of this post?  I'm not really sure!  Just throwing some stuff out there.  But to end on a good note, sweet L, would like to sing everyone a bed time story.

A New Year, A New Diagnosis.

Here we are, 2014.  A new year a new go at life and all that other fun stuff.  What does it mean for G?  Another diagnosis.  If y'all remember about two weeks ago, G had a 72 hour EEG done.  The results were delayed because of the holiday's and the hospital being short staffed due to the season.  Well, we got the call today.  G has epilepsy.  He's having seizures on both sides of the brain, multiple times a day.  Tomorrow he starts taking Zorontine to see if we can get them under control.  The hubs and I were shocked.  We thought the test wasn't going to show anything.  When he was one, he had a sedated EEG which didn't show anything.  The Dr. said he can't say for sure he wasn't having seizures, but he wasn't having them during the test.  As time went on we kind of put it on the back burner and thought it was all due to his Autism.  It wasn't until two of his therapists had brought up that they thought he was having seizures, and a phone call or two, or three of four from me, that the neurologist decided to do the 72 hour EEG.  The therapists were right!

What are we hoping for?  We're hoping that maybe some of his delays and regression are due to seizures and with the right medication he may have some improvements. We're not expecting him to wake up the next day and start talking, but maybe over time it might help, maybe it'll help with his balance and/or maybe it will just help him be able to concentrate.  Maybe it won't make a difference.  Only time

In other news, G said "more" the other day and L started singing along with Bert and Ernie whenever they sing, "I LIIIIIIIKE YOOOOOOU!" Cutest thing ever!  L has also been a bit of a bully lately and pushing G around.  This age is no joke!

Farewell to 2013!

As we say goodbye to 2013, all I can think about is what a crazy year it's been.  We got our official Autism diagnosis, SPD, Hyperlexia, seizures, mastocytosis, genetic deletions and mutations.  We learned for every heartache, our family grew stronger, with every diagnosis we learned to work and love harder.  Most of all, we learned that we didn't lose the dream of the perfect child, we just had to change the path. To us our children are perfect for them, and perfect for us, if that makes sense. They have introduced us to a world we knew nothing about but learned more then we ever thought we would.

We are thankful that in 2013 we became a part of a strong Autism community.  We befriended amazing families and children we may otherwise not had the chance to meet.  We lost friendships and gained new ones with people that understand our journey and have been along for the ride with us.  To this, we will forever be grateful.  The amazing people we have met, weather it be other families, therapists, doctors and even strangers we crossed paths with have given us a shoulder to cry on, a pat on the back, cheered on our children and have became a part of our lives and love G&L for everything they are and encourage them to become everything they can be.  Words can not describe how thankful we are for these people.  I can not say enough for our friends that stepped up to the plate and embraced us, while others shied away.  You will always have a piece of our hearts.

We don't know what 2014 will hold for G&L.  I think it will be exciting, full of adventure and a lot of hard work.  They'll have their good days and bad and they will continue to teach us the power of perseverance.  From our small preemies to now almost three year olds, we have learned that almost anything is possible.  This past year we've learned so much from them.  We've learned it's OK to give up today, as long as you try again tomorrow, not to sweat the small stuff, because there will always be something bigger and better and most importantly, hugs from a toddler will cure just about anything.

Bring it on 2014!  We're read for what you give us!  This is going to be the year of G&L  Happy New Year Y'all!

Christmas in a Padded Room.

Merry Christmas and Happy Holiday's to everyone!  I'm Jewish, Hubs is Christian, so we do just about every  holiday under the sun and our children...well, they're most likely a bit confused.  Well, one day they might be confused.  Right now they don't really seem to understand much.

Yesterday started out as a normal day. Fighting, pushing, stimming...you know, the norm.  We finally pulled out the gifts (We don't do a tree because the boys can't be trusted around it), and they tore into the presents.  L was all about it, G wasn't so sure about it but once he saw the toys, I think he started to catch on.  He became fixated on the first toy, so the hubs and I kind of opened the rest of the gifts for him, but tried to get him to participate as much as we could.  L was all about that paper! The sounds of ripping paper, new toys, excitement and new sounds coming from the toys is enough to put anyone in a corner to rock back and forth.  It was definitely way too much for the boys. Live and learn.  They become SO overstimulated, the rest of the day was pretty much shot. It turned into a no napping, crying fighting super stimmy kind of day.  We really could have used a padded room in the house yesterday.  That's just for the hubs and I.  I think the kids would have needed there own.

 I haven't smoked in over 13 years but let me tell you.  I was jonesing for one to calm my nerves.  Rest assured, I did no such thing. Instead I ate a chocolate Santa. Not such a healthy alternative but at least I spared my lungs.  The boys are still a but overstimulated but are doing much better then yesterday.  I pray they take a nap today because this momma needs a nap in the worst kind of way!  I already have two cups of coffee down the hatch and it doesn't seem to be kicking in.  Thankfully the boys are playing nicely for the moment...with the help of Sesame Street in the background. MOTY!

We don't have any therapies this week.  I REALLY wish we had OT today to help recenter G&L.  Ot had done wonders for them. They could sure use it.  I think I could use come brushing a joint compression as well!  Sometimes when the boys are on all the swings and the huge ball pit during therapy I have to hold myself back from not diving in with them!  It looks like so much fun and so soothing.

The hubs parents are coming for a visit for the next week.  I'm hoping to keep the boys on schedule as much as we can.  They thrive on schedules.  Once their schedule is thrown off it can take a while to get back on.

In other news, L has finally started feeding himself with a spoon!  So excite!!  He's doing such a good job with it.  G has regressed a little bit, but he's trying.  L has also started to sing a lot. Although I love his singing, I would rather him not do it at 4am.  Kids with Autism need turn off switch so they could sleep at night.  I'm sure the Autism world would be a happier place if everyone could get a good nights sleep.  Two hours till nap time!!!!

Where did my children go?

Where did my children go?  Who are these beasts in my house today?  Screaming, fighting, pushing, yelling, you name it.  Why you ask?  All over a piece of paper that has the alphabet written on it! I wrote it again on another piece of paper, but I guess that one just wasn't good enough!  Who would have thought a yellow piece of paper with the alphabet on it would cause such problems?

Anyway, so Sunday night we took the boys to Holiday Express!  I think they had fun.  It's sometimes hard to tell.  We know G loved the train ride.  That kid was grinning ear to ear.  L not so much.  He had a death grip on me but would smile occasionally.  He's not as into movement as G, unless he's running.  Then we took them on the carousel of death! I call it this because this carousel moved at warp speed!  I was pretty sure we were going to see kids start flying off of it.  The hubs went on with G and I took L.  I think L is more like me and doesn't do well with fast speeds.  The hubs and G did well on it, but even the hubs who loves rides and roller coasters thought it was a little crazy! At one point L put his head on me and moaned a bit.  I thought for sure our friends J&C who were on the horses behind us were going to get a face full of L vomit!  Thank goodness he held out!  It could have been bad!  After that we walked around for a little bit to see all the lights and then went out for dinner.  The boys did so well at dinner, since they were so exhausted.  They almost fell asleep.  It was the first time we have been to a restaurant since April when G started pelting apples at the table behind us.  Fun times!

This Friday we take G to the hospital for his 72 hour EEG.  It should be fun trying to get him to keep all those things stuck to his head....said no Autism parent ever.  He hates things on his head, so this should be quite the adventure.  We could use all the extra thoughts and prayers you have!

Here are some pictures from the train ride!!

Oh, and for fun, here is a picture that L's running buddy made.  She's such a sweetie!

The Land of IEPS, Stimming and the Big T word, "Transition."

Today we had what so many parents of special needs kids fear, the IEP meeting.  For those that don't know what an IEP is, it's an Individual Education Plan.  Every child in the school system with special needs is supposed to have it.  It consists of goals and services that is decided on by the IEP team, which includes the parents. So, today was our second IEP meeting.  The first one was at our house.  It was more of a, "this is what's going to happen" type meeting. Today was a more important meeting.  They learned more about the boys and made decisions on what assessments they need.  Last night was nervous to the point that I didn't want to eat, and I LOVE to eat.  I went in there confident, with the boys notebook full of there info since birth and I was ready to go.  Turns out I talk a good game, as they were all impressed.  I even caught some mistakes on their end.  Kudos to me ;).  This momma bear isn't going to let anyone inadequately determine the fate of G&L. They jokingly told me I should work there.   It blows my  mind when they told me some parents don't even come to the meetings.  How could you not want to help pave your children's future?  Isn't one of the biggest goals of being a parent to have your child have all of the greatest opportunities life has to offer?  Just because G&L have special needs, it doesn't mean they deserve any less.  So, all in all it went well, everyone seemed nice and wanted to learn about the boys.  We'll see how the rest of the process goes.

I wish my boys could stay itty bitties and be in Early Intervention for ever.  They say kids with Autism have trouble with transition.  Well, let me tell you...I can see why!  I'm scared to transition the boys into the school system.  Who will hold their hand? Wipe their tears? protect them from bullies? Transition from EI to the school system is not fun.  It's an entire new stage in life!  It's like saying your babies aren't babies anymore...even though they'll ALWAYS be my itty bitty babies!

Today has been a super stimming day full of head stands, spinning, VERY LOUD screeching, running, flapping crying, jumping, no napping kind of day.  G has developed a really goofy laugh that makes me crack up every time I hear it.  L has be a super snuggler today!  I think he has a crush on a friends 4 year old daughter.  I guess he likes older women. It's pretty cute!

So, to those about to transition to the IEP process, take a deep breath, get organized, know your rights, and have all your information there in front of you.  Remember, YOU are your child's best advocate.  No one knows your child like you do. They need you to be their voice.

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.