Busy, busy, busy

Holy Cow have the last few weeks been nuts!

*Macie had her play based evaluation at the preschool last week, and she did AWESOME!  She did so awesome that I thought they might decide to put her in a "regular" classroom with an aide.  Oddly (to some), we would prefer for her to be in their special ed. program for AT LEAST a year.  I think she would get more out of it, and have more intense therapy.  We have a meeting next week to find out which program she will be in, and how many days/hours a week.  She didn't want to leave the school when it was time to go.  I cried the whole drive home because I was so proud of how well she did, how far she has come to this point, and because I can't believe my "baby" is going to school in a few weeks!
*We have started the process of Emma being evaluated by Early Intervention.  She has had her speech evaluation already.  OT comes today to do her evaluation, and I am still waiting to hear back from DT, and PT to schedule those evaluations. 
*The next couple of weeks are going to be a whirlwind of craziness.  With Emma's evaluations shoved in between Macie's therapy, make up therapy (since she is done Sept. 19th with EI), Dr. appointments, birthday parties, daycare visits (for Emma and possibly Macie), Macie's 2nd evaluation at Children's Memorial, IEP meeting at the school, discharge meetings with EI, and a wedding in there......I think Phil and I will need a vacation!!!!  So....if I am not blogging in the next few weeks- you all know why!!!
If I were a more organized person, this probably wouldn't be so overwhelming.

Emma

I totally slacked off and never did her 18 month post.  Sorry Littles....
Mommy is so super busy with you and your sister these days that I can't find time to sit and write it.
You are a climber, just like your sister.  It's really more of a "monkey see, monkey do" situation.  You are a bit more cautious than Macie, but you have to try everything!!!!  I caught you up on the entertainment center again today right beside Macie.  These situations are so hard since Macie climbs for different reasons than you do.  I'll be able to explain it to you some day, and then hopefully you will understand why the discipline is different for the two of you in these situations.
You are such a talker.  Your favorite word right now is "NO".  "Emma, did you have fun on your walk?" Emma- "NO!!!".  Mind you, she squealed in delight the whole hour walk!!!  "Emma, say night night to your baby."  Emma- "No".  "I love you Emma, Night night."  Emma- "No".  You love going for walks, or doing anything outside.  "Emma, you want to go for a walk?"  Emma- "outsiiiiiii".  "Emma, where are your shoes?"  Emma- "Shoooooooooo, outsiiiiiiii".  When Macie climbs on things you say "dooooowna, Cie!"  You MUST point out EVERY tree on our walks and say "teeeeee".  You point to many things and say "WHOA", or "wow".  We have to watch every thing we say now since you are a parrot.  You used two four letter words the other day, and used them appropriately.....we're so proud!
You are so very independent.  You won't eat most of your food unless you have a fork or spoon, even if they don't necessarily require a fork!!!  You resist holding Mommy's hand if I need you to for safety reasons.  When I grab your hand you throw yourself on the ground and scream in protest.  It's my favorite when you do it in a crowded public place.
You are definitely our "girly girl".  You love trying on hats, sunglasses, necklaces, dresses.  You smile, giggle and twirl around when we say "oh pretty Emma".  You love brushing your hair, but hate having anything put in your hair.  You take very good care of your baby dolls by feeding them, and patting them on the back and saying "awwwwww".
Although you are learning a lot from Macie in the way of climbing and being a daredevil, I think you are also teaching Macie a lot.  She sees you playing with toys, and learns how to play with them too.  Macie is much more verbal these days, and I am sure it's because you never stop talking.  You two still aren't real fond of each other, but once in a while I will catch you two holding hands, or having your own little conversation over breakfast. 
You have such an awesome personality.  You are part clown, and part sweetness!!!
Love you to pieces Little Ems!!!

Mommy

Mommy's Little Helper

It's about time she pitched in around here!!!

Videos

Macie decided she didn't want to nap the other day so this is her after dinner.  Emma is trying her best to annoy her, and it worked like a charm!!  I think Emma is trying to tell her that she should have napped when she had the chance!

Emma is 18 Months!

Dear Emma-

I can't hardly believe you are 18 months old already! 
And that's as far as I got on this post......too busy with the 18 month old.
Promise I will write more in a few days.
Pathetic, isn't it?  Is this an example of the "2nd child syndrome"?

Funny story

Macie's OT was here yesterday, and they were having the best session EVER.  Macie was drawing on her Magna Doodle so the OT decided to draw with her to see if she would allow her to take turns drawing.  Macie gave up the pen to her so she drew a picture of Otis.  Macie was very interested in her drawing so the OT talked a little about Otis, and then she drew a little girl and said it was Emma.  Macie looked at the drawing of Emma, pulled the pen out of the OT's hand and violently scribbled all over Emma.  The OT decided to take it one more step and draw me sitting at a table.  Macie grabbed the pen from her and drew a big circle around me. 
Pretty much sums up how she feels about her sister!!!!

A jumbled mess

My head that is.....
I have been so bad at updating this blog.  I go so long (for me) in between posts that when I sit down to do a new one, I freeze.  There are so many things I want to write about and I can't organize my thoughts.  So maybe I'll do bullet points today, and add some really cute pictures to distract you from the randomness that is in my brain.

*Macie is doing AWESOME lately!  Some HUGE accomplishments for her are:  When the therapists come she actually goes over to their toy bags/boxes and picks out a toy/activity.  Before it was like pulling teeth to get her to even sit and play with toys.  She is recognizing herself more and more everyday in the mirror.  She is referencing others.  I am constantly pointing to things for Macie to look at, but she never "gets it" but yesterday I pointed to a bird sitting up on a wire in our back yard, and she looked at it, and was trying to say "tweet tweet".  Something just seems to be connecting with her, and it seems Phil and I are not the only ones who notice it.  This very bumpy road we are traveling seems to have some smooth spots!!!!
*Emma-  oh boy, Emma.  She never stops "talking" from the minute she wakes up, until she goes to bed.  When I go to get her up in the morning she always says "Hi", then she grabs her stuffed frog, and says "fu fu fu fu", and hands it to me.  Then she grabs her baby doll and says "bay beeeeeee", and then says "uppa uppa uppa".  She's hilarious and she knows it.  She falls on the ground on purpose and says "ouch", or "oh nooooooo".  She grabs our hands and says "dance, dance, dance".  She likes trying to jump, but hasn't mastered getting her feet off the ground so she just flaps her arms up and down and says "jump jump jump".  She's very polite and always says "thanks" when you give her something.  She puts her finger up to her mouth and says "sssshhhhh", and then whispers.  She loves playing pat-a-cake, and peek-a-boo.  If I say "where's Emma", she covers her eyes and says "boo".  So cute!  She can't say the letter P so Papa is "apa", and pasta is "asta".  She knows what a cow says, and she'll tell you, but only when she feels like it!!!
Even with all these things, I still worry about her.  I don't know that I'll ever stop worrying.  She's almost 18 months old, but I don't know what age it's safe to stop worrying!  Macie had already been evaluated by 18 months so I know there were more "signs" with her at this age.  Does that make it "safe"?  Emma flaps her arms, but I don't know if she's just imitating her sister.  She now says "duck a duck a duck a duck a duck a" a lot.....Macie used to do that before the light bulb went off with me.  Emma does this weird shaking thing when she's super super excited about something (like me peeling a "nana" for her), and it strikes me as odd.  I don't quite know what "normal" is at this point.  I wish I could stop worrying.  I wish I could sleep at night without all these "what if" thoughts going through my mind.  I want to have evaluated to put my mind at ease, but I am also afraid of what they might "find".  Now that I actually typed that, it seems very selfish of me to not have her evaluated.  I don't know if it's my "Mommy intuition" that sees things, or my paranoid Mommy self......I'm making the call.  I can't change the outcome either way, right?
On that note....here are some pics of my adorable girls!

The look of pure happiness!

Macie LOVES watching her Daddy climb the tree!

I LOVE the way she looks at her Daddy

This is why we call her "The Face"....so sweet and innocent.

The climbing twins

I am at a loss here

The climbing that both girls do is making me crazy!  They climb all day long.  Furniture, stairs, ANYTHING.  I guess, from what I am told that Macie climbs to help her deal with her sensory issues.  Emma climbs because her sister does.  Emma has mastered climbing on the couch, chairs, entertainment center, and stairs.  She's watched Macie put a toy next to the entertainment center, and use that to get on top of it.  Emma already fell off once and had a trip to the ER.  Macie is an amazing climber, and has some crazy balance and strength, but Emma is a little more clumsy like me!!!
I don't know how to make it stop.  I can't leave the room for a minute to do anything.  I can't go to the bathroom without taking one of them with, or both.  The minute I leave the room, one of them is climbing on something. 
I've tried everything short of selling our house, and moving in to a ranch house with no furniture, but that might have to be our next move.  At least we wouldn't have to worry about the cost of furnishing a new house, right? 
If anyone has ANY ideas to help me with stopping the climbing, I am welcoming anything and everything. 

A powerful lesson

I am finally getting back around to reading the book Dancing With Max.  I think I mentioned this, but will again.  My friend Susie got this book for me from her church.  The author, Emily Colson, was a guest speaker at their church.  Her son Max is autistic.  It's really a very wonderful book, and has me thinking about a lot of things- mainly my faith.  It's not "over the top" with religion, but just enough mentioning of God to make me open my mind a little more.  I won't get in to it, but I will say that God has not been a large part of my life, or should I say I haven't allowed God to be a part of my life.  I believe my reasons are valid, but some may not, and that is why I choose not to discuss it. 
There are certain parts of the book that really grabbed my attention, and made me think a little bit more about the role that God has in my life.  For example:
"Max forces us to raise the most important question of our age:  What does it mean to be human?  If the geneticists and 'science for science's sake' crowd were to have their way, we would weed
out the unfit and create the perfect human race of infanticide, euthanasia, or, eventually, genetic engineering.  But what would happen to our humanity?  Gone would be many of the problems and ailments-that's true.  But also gone would be the trials that shape our character- and inevitably our freedom would disappear.  For to be perfect and live problem-free in a fallen world is to be a slave to whomever makes you that way.  And if we, as creatures, were perfectly programmed by our genes, we would be stripped of the capacity for genuine love, which by its very definition must be an act of free will.  Love goes to the very essence of being a Christian, indeed of being human." 
"Real love is refined through pain and suffering, which is why one friend, when she learned of Max's autism, said to me, 'Oh, you have found favor from God, because he has given you this special-needs child so you can experience sacrificial love.'".
Pretty powerful, right?

A Really Good Day......

and yet I sit here typing with tears in my eyes.  Macie had a good day today.  Actually make that a GREAT day.  Despite the little cold she has that has kind of wiped her out the past few days, she was "on" today.  It's hard to put in to words what it means when I say she was "on" today.  She was engaged, playful, loving, connected.  She was talking, playing in the tub with Emma.  She acted like she just now realized that she has a built in playmate, and she can be kinda fun.  Macie gave Daddy and I many hugs and kisses today, and we didn't even have to ask.  She participated in some songs, and she followed along with the 100 books I read her at bedtime.  She played Barnyard Bingo with us today, she swam in the pool and dunked her face in the water.  She said "Dada" several times today, and she held my hand while we were watching a cartoon before bedtime. I swear we heard her say "love you" to Daddy when he was doing his nightly ritual of tossing her around, and tickling her before bed. 
We don't get to have this Macie every day.  If I had my way, I would have not let her go to sleep tonight and I would have played and talked to her until the sun came up.  I kissed her goodnight, she smiled, and kissed me back and she fell asleep.  I came downstairs crying.  Phil asked me what happened.  I told him that I was upset because I know that tomorrow I might not have that Macie.  I could, and I pray that's the case, but it makes me sad that she may not be as "connected" tomorrow.  I'm not sad for me, and I wouldn't change a thing about Macie, but I am sad for her.  I see her struggle to form words to try and get a point across, or ask for something.  She gets right up in my face with this very intense look in her eyes, and she tries to form words, but they just don't make it out of her mouth.  Today, she was making more sounds than I have heard for over a year.  Just looking at her I know she has a lot to say.  She was making "F" sounds, "G" sounds, "S" sounds, etc. 
All I can do is encourage her to sound things out, use her words, and praise her by saying "good talking", but I still feel like I am never doing enough to get her to be able to verbally express her wants. 
So, I sit here blogging at 11:30pm because I can't sleep, and I am worried that she will wake up and be silent again. 

Hey Ma, could ya just let me enjoy my graham cracker picnic without snapping 100 pictures?

She shoved the entire cracker in her mouth in 2.2 seconds so that Otis wouldn't get it.  he's famous for stealing crackers right out of their hands.......shocking, i know!

I am in shock

Not guilty?  Honestly?  Everyone knows the details of the case so I won't rehash them.  I am so angry about this verdict.  What exactly were the jurors thinking?  I would not want to be in any one of their shoes, and if I were them- I would leave the country with Casey Anthony.  They can bring Casey along to be a live in babysitter for their children.
If either of my kids were missing for even 31 minutes, let alone 31 days- I would be a mess.  I certainly wouldn't be out partying, and getting tattooed.  Just SICK!
I am sad that justice was not served.  I know so many people who have struggled with infertility, illness, and the loss of their children.  Casey Anthony was given the gift of a beautiful, healthy little girl and she took her life (in my opinion), and had no remorse. 
Rest in Peace sweet Caylee. 

5 Years

5 years ago today, I made the best decision of my life, and I married Phil.  I had searched a long time to find "Mr. Right".  Phil has exceeded my expectations.  He is my best friend, an amazing husband, and the best Daddy to Macie and Emma.  We have had some bumps in the road over the past 5 years, but I couldn't imagine going through all we've been through with anyone else but Phil. 
Happy 5 year anniversary, Phil.  I love you more everyday!  Looking forward to the rest of our journey!

I love you!

Macie's 2nd Evaluation

will be at Children's Memorial Hospital on September 9 at 9:45am.  We just BARELY slid in before she ages out of Early Intervention. 

More random than ever!

I seriously can not come up with anything even remotely interesting to blog about lately.  Guess that could be good, and bad.  I also can't find more than 10 minutes to sit down and type.  For that reason, I have to do these "random" posts.  So here goes the spilling of the contents of my brain:

Phil got shit on by a bird yesterday.  It's never happened to him in his life, and I thought it was rather amusing.  It wasn't your average white variety bird shit either.  It was the purplish black variety that stains light colored cars, and makes you wonder what that bird was eating that day.  It got him on his shoulder!  You couldn't really see the damage until he took his shirt off and it stained his shoulder.....gross.  I hosed him down with some antibacterial soap, and he was good as new. 

We went to the Zoo on Saturday morning for a few hours.  Emma loved it, Macie was content to run around, climb, and people watch.  For some reason we thought it would be a good idea to stop for lunch on our way home.  Long story short- after getting stares from everyone in the restaurant, and Macie having a colossal meltdown in the parking lot, we got our food to go.  I guess we thought the girls would miraculously not be tired when they sat down at the restaurant- BIG FAIL.  Macie was so out of control that some lady felt the need to bring her a giant stuffed animal.  Phil was in the process of getting his ass kicked by Macie, only to have her get more out of control at the sight of this thing.  She freaked when the lady brought it over.  Can you blame her?  Scary!

I am feeling some serious guilt right now.  A little while ago Macie went down for her nap, and I had some very rare alone time with Emma.  We played catch, played with every single toy she has, we danced, chased each other around, laughed, and even had a little cuddle time.  She is just so much fun, she's so smart, and so very happy.  I feel like she really gets put on the "back burner" a lot.  Macie's therapies take up a lot of our time.  If Macie is not having therapy, the girls are napping.  This leaves no time for us to get out and let her play with other kids her age.  It's also impossible for me to take them both out anywhere by myself.  It sounds pathetic, but I can't handle Macie a lot of time by myself, let alone if Emma is with us.  It's really quite sad.  I would love to put her in daycare a few days a week, but we all know how expensive that is.  I quit my job to spend more time with Macie.  Without the extra income there is just no way to put her in daycare.  She needs to be around other kids.  Macie pays ZERO attention to Emma except to steal a toy, or a graham cracker from her.  Emma takes it pretty well, but I am so afraid that she will be hesitant to approach other children thinking they are all like Macie.  In a couple of months Macie will be in school, and I think we'll have to look into getting Emma into something while Macie is in school.

Macie is doing well in therapy.  She's still making great progress, just not in the talking department.  It's extremely frustrating for everyone!  You can tell that she has so much to say.  She'll get really excited, get up in your face and just not be able to form the words to tell us what she is thinking.  It breaks my heart.  She woke up crying from a nap the other day, and I have no idea what was wrong.  She didn't want me near her, but yet she didn't want me to leave her room.  I don't know if she was scared, if she didn't feel good....I had no idea!  I have been worrying a lot lately that she may never talk.  We're still trying to get another evaluation scheduled for her.  It's hard since she will be aging out of Early Intervention in September.  We wanted to take her to Alexian Brothers, but the informed us the other day that they are booked solid for six months.  Now we are in the process of trying to get scheduled at Children's Memorial.  We don't doubt the initial diagnosis, we just don't feel comfortable with how it went.  Not only that, but it's been over three months since the evaluation at Illinois Masonic and we still don't have the report from their evaluation.  They gave us 45 minutes of their time, threw the diagnosis at us, and walked us to the door with a packet on Autism.  Guess I'm not surprised they haven't sent the full report yet! 

On to more fun things with Macie:  she discovered her shadow a few weeks ago, it was hilarious!  I don't believe she knows it's her shadow, she just thought it was funny and couldn't figure out why it was following her.  She kept trying to get away from it.  She's great at matching things.  She will go through her entire toy box to find a matching item for her Mrs. Potato Head (ears, purses, tongue, wings, etc.).  I am pretty sure she would be able to count to at least 10 if she could speak.  She points to things while I am counting them.   She escaped from her room the other morning (we have a gate in front of her door for her safety).  She let us sleep, went downstairs and tried to turn the TV on herself.  When she couldn't do it, she came back upstairs, climbed in our bed and handed us the remote!

Creepy right?

New Book for me!!!!

My wonderfully amazing friend, Susie got a book for me.  It's called "Dancing with Max, A Mother and Son Who Broke Free".  The author, Emily Colson, has a son with autism, and she spoke at Susie's church a few weeks ago. 
I am not very far in the book, but it's really great so far.  She really hits the nail on the head with some of her descriptions on dealing with autism on a daily basis.  For example:  "Max would be awake again soon.  Maybe he was awake already, trying to make sense of the world, something I couldn't help him with.  I didn't understand life right now any-more than he did.  It would be easier if I had a guarantee that everything would get better, if I knew the struggle might even end at some point.  It could end like trials do for other people, everyone gathering around celebrating, throwing a party with cake.  Everyone noticing.  But that wouldn't be our story.  Tomorrow I would have to find the courage, the endurance, to breathe deeply and simply start again, even if no one noticed". 
Well said......

A new blog

I stumbled across a new blog today, and I am pretty excited about it. 
This blogging Mommy has a beautiful little girl with autism.  She looks like she could be my child!

She recommended this book on her blog, and I ordered it today.  I can't wait to get it! 

When can I breathe again?

Emma is 16 months old now.  This is the exact age Macie was when I started noticing that something was wrong.  Macie had delays, she was losing words, she had quirks, and red flags were flying all over the place.  I was also about ready to birth my second child, and I wrote a lot of it off to stress, hormones, frustrations, etc. 
I'm not gonna lie, I am worried about Emma.  There is nothing specific with her that makes me paranoid, it's just past experience, and her age.  I lose sleep because I am afraid that I might wake up and everything that Emma knows and does will be gone.  I hold my breath when I go in to get her in the morning.  I am afraid she will have that blank stare that Macie used to get when I would go get her.  There is nothing worse than going in to get your baby, and it seems they don't know you, or are looking right through you.  I know that worrying won't stop anything from happening, but I can't help it. 
I've tossed around the idea of having her evaluated by Early Intervention.  I want to do it just to put my mind at ease, and just in case she does have delays we can get her the help she needs early. 
I talked to Macie's speech therapist today about Emma.  She's seen her enough, and she also is an "expert" on autism.  She has her PhD, and I trust her opinion.  She asked me questions about Emma, and told me that she did not see any reason for me to be worried, or have her evaluated at this time.  I felt a little better. 
It's really quite sad.  Most parents want to stop their kids from growing up too fast.  I want to fast forward about a year with Emma.  I want to be past this worrying stage, and know that she's ok. 
I want to breathe again!

She adores her big Sis

I just love this picture. 

Emma idolizes Macie, and it's evident in this picture.

Some fun in the sun

Macie

I haven't done an update on Macie lately and I am feeling a bit guilty about that.  I am in a weird place right now.  My emotions are all over the place.  I am so proud of how far she has come in the past year.  I am proud to be her Mommy.  I love her with every ounce of my being, and I would not change her for the world.

With that being said.....I will say that I am not yet to the "acceptance" stage.  I accept the fact that Macie is autistic, and I know that I can not change that, but you better believe that I am angry as hell.  There is so much "stuff" surfacing on the news about autism, research on autism, what role vaccinations have in autism and all this "stuff" is pissing me off beyond belief.  I was going with the belief that autism is genetic, and that I am not to blame for Macie having autism.  Now I am not so sure what I believe.  I won't go in to great detail, but researchers are uncovering many cases where families were compensated for vaccination "injury".  Many cases involved children that showed "autism tendencies" after being vaccinated.  We chose to do delayed vaccines for Macie from the beginning.  It wasn't because we believed that they caused autism, but we felt the amount of vaccines they give to children at one time is extreme.  We didn't feel it was necessary to inject so many in her little body all at one time.  When she was 15 months old, we did get her the MMR vaccine, but that was the only one we did at that time.   In November of 2009 the big H1N1 "scare" came about.  I was 8 months pregnant with Emma at the time, and I did a lot of research, and a lot of talking with my Dr.  I was torn with the whole situation.  I worked in a restaurant, I was exposed to a lot of germs.  Macie was 14 months old and I was scared she might get it and get very ill, pass it on to me.  H1N1 was killing pregnant women.  My Dr. had a woman who was clinging to life as was her unborn child.  It scared me, and I couldn't decide if it was worse for me to take the chance and not be vaccinated.  Either way I felt guilty.  Long story short, Phil, Macie and myself were vaccinated in November 2009.  Macie had the MMR, and the H1N1 (first round- we never got the 2nd dose) within one month of each other.  In January of 2010 (could have been sooner) Macie stopped saying new words, and was losing the words that she already had.

So.....with all the new research, and findings that are surfacing in the news makes me a little leary.

As I write this post many families in the US are receiving the devastating news that their child has autism.  One in 110 children (1 in 70 for boys) will receive a diagnosis of autism.  There is no known cause, there is no cure.  There is not enough being done to find the cause(s) and/or cure, and it is more common than any cancer, juvenile diabetes, and pediatric AIDS combined. 

All of these facts really piss me off.

It is my job to protect my kids, and I couldn't protect her from this.  I feel responsible, and I will feel that way until someone proves me otherwise.  Of course I had no idea what the future would hold and how, and if the vaccines would affect her, but that decision to "roll the dice" was in my hands.   I have, and will make many decisions in my life that take a turn and don't work out in my favor, but this decision was potentially life altering for my kids.  So.....here's a big F YOU to autism, vaccinations, lack of research, lack of knowledge, and lack of information I felt I had at the time.  F YOU!  K, I feel a little better.