Thursday, June 30, 2011

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. 

Tuesday, June 28, 2011

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?

Monday, June 27, 2011

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......

Thursday, June 23, 2011

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! 

Thursday, June 16, 2011

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!

Tuesday, June 7, 2011

She adores her big Sis

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