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.


Friday, November 8, 2013


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!