Macie winding down with a little drawing before bed.
Emma is exhausted after taking care of her baby all day!
Thursday, March 31, 2011
Some Randoms
These are the BEAUTIFUL flowers that Gayle, Mark, Katie and Ryan got us! This picture was just taken, a week and 1/2 since they gave them to us. They are still looking good, and very fragrant.
Macie winding down with a little drawing before bed.
Emma is exhausted after taking care of her baby all day!
Macie winding down with a little drawing before bed.Emma is exhausted after taking care of her baby all day!
Tuesday, March 29, 2011
Question 3
What exactly happened at Illinois Masonic?
We were led into a small room and introduced to a Psychologist, Occupational Therapist, Speech Therapist, and Developmental Therapist. There was a Developmental and Behavioral Pediatrician behind a mirror.
The Psychologist asked us 324756 questions while the others "played" with, and observed Macie. It was overwhelming for us so we can't imagine what Macie was feeling. Two of them were up in her face trying to get her to do things, and one of them was lifting Macie off the ground by her armpits and slamming her feet on the ground. I pretty much wanted to beat all their asses, scoop up Macie, and run out the door. Instead, I kept telling myself that this is what they do.....they know what they're doing. At one point the DT asked us if Macie pointed out body parts like her "nose". We answered no, and looked over at Macie who was pointing out her nose. She also put puzzles together which she will rarely do for us.
Anyway....they spent about 45 minutes with her, and then left the room. They met for about 20ish minutes and came back to talk to us. During the time they were gone a man came in the room. He didn't introduce himself, and he was carrying wooden train tracks and a Thomas the Train. He sat down at the little table across from myself and Macie. He turned to us and said "so....you came all the way from Bourbonais!" Um....NO, and who the heck are you? As he's talking, he's spitting all over me. Phil mentioned that the look on my face was priceless....I can only imagine! I'll be honest, at first I thought he was an Autistic adult that just happened to wander into the room we were in. We finally figured out that he was the Pediatrician behind the mirror/glass. He was a very nice man, and I am sure he is very intelligent, but his approach really sucks. He chased us down the street when we left to give us some information on Autism, and some local programs, etc. He was very helpful....eventually.
Based on their observations, she falls on the spectrum.
Here are some of their "findings":
Development: Non-verbal cognitive is estimated at an 18-19 month level
Expressive and receptive language are at 9-12 months
Gross motor development at 20 months
Fine motor at 22 months
Descriptive summary:
I won't type the whole thing, it's long.
"Macie is an adorable girl who presents with a difficult temperament with negativity often predominating. She presented today with patterns of communicating and behaving that are consistent with a diagnosis of Autism. Macie demonstrates delayed and atypical communication."
That is just the first few sentences. It still hurts to read it. I take it personally. Words like "difficult temperament, negativity, easily frustrated, avoidant, etc.", they really hurt my heart.
How can a parent not take those words personally to an extent.
We will be getting a more detailed summary some time soon.
We were led into a small room and introduced to a Psychologist, Occupational Therapist, Speech Therapist, and Developmental Therapist. There was a Developmental and Behavioral Pediatrician behind a mirror.
The Psychologist asked us 324756 questions while the others "played" with, and observed Macie. It was overwhelming for us so we can't imagine what Macie was feeling. Two of them were up in her face trying to get her to do things, and one of them was lifting Macie off the ground by her armpits and slamming her feet on the ground. I pretty much wanted to beat all their asses, scoop up Macie, and run out the door. Instead, I kept telling myself that this is what they do.....they know what they're doing. At one point the DT asked us if Macie pointed out body parts like her "nose". We answered no, and looked over at Macie who was pointing out her nose. She also put puzzles together which she will rarely do for us.
Anyway....they spent about 45 minutes with her, and then left the room. They met for about 20ish minutes and came back to talk to us. During the time they were gone a man came in the room. He didn't introduce himself, and he was carrying wooden train tracks and a Thomas the Train. He sat down at the little table across from myself and Macie. He turned to us and said "so....you came all the way from Bourbonais!" Um....NO, and who the heck are you? As he's talking, he's spitting all over me. Phil mentioned that the look on my face was priceless....I can only imagine! I'll be honest, at first I thought he was an Autistic adult that just happened to wander into the room we were in. We finally figured out that he was the Pediatrician behind the mirror/glass. He was a very nice man, and I am sure he is very intelligent, but his approach really sucks. He chased us down the street when we left to give us some information on Autism, and some local programs, etc. He was very helpful....eventually.
Based on their observations, she falls on the spectrum.
Here are some of their "findings":
Development: Non-verbal cognitive is estimated at an 18-19 month level
Expressive and receptive language are at 9-12 months
Gross motor development at 20 months
Fine motor at 22 months
Descriptive summary:
I won't type the whole thing, it's long.
"Macie is an adorable girl who presents with a difficult temperament with negativity often predominating. She presented today with patterns of communicating and behaving that are consistent with a diagnosis of Autism. Macie demonstrates delayed and atypical communication."
That is just the first few sentences. It still hurts to read it. I take it personally. Words like "difficult temperament, negativity, easily frustrated, avoidant, etc.", they really hurt my heart.
How can a parent not take those words personally to an extent.
We will be getting a more detailed summary some time soon.
Friday, March 25, 2011
Question 2
How are you and Phil doing/feeling?
The answer to this could turn into a really long post. I will try my best to summarize.
We are doing ok.
I think we are having difficulty sorting out our feelings. Some of the emotions that are surfacing are confusing. The first emotion for both of us was sadness. We feel selfish for feeling sad. Sadness is often felt when something, or someone is "lost". We almost feel like we are in mourning. We didn't "lose" Macie. She is still "The Face", but we most certainly are mourning the loss of hope that she would not get this diagnosis. We are mourning the loss of a "normal" life for Macie. I say "normal" because there is no cure for Autism, no one knows how and why it happens, and this is something Macie will struggle with her entire life. I feel like we have been taken out to the middle of the jungle and dropped off with no map, no compass, no food, and no water. We were given this diagnosis, but were left with so many unanswered questions. We were left to kind of figure it out on our own. Where is she on the spectrum? Will she ever talk in sentences? Will she ever read or write? Will she ever make friends, go to college, get married. Will we ever hear her say "I love you", and know the meaning behind it. We have no idea, and it's scary and heartbreaking. (I do have hope though- please ready Kim's comment under "Question 1 post")
Maybe it sounds harsh to some that I say we are in "mourning", but I want to be honest and candid along this journey. If I am honest and candid, I just may be able to help someone else, and in the process help us.
We are also angry. Why us? What did we do wrong? We are her Mommy and Daddy, and we couldn't protect her from this. It's our job as parents to protect our kids, and we feel we failed at that. There is no concrete answer to the diagnosis so why wouldn't we blame ourselves?
Every day gets better, and every day we have different feelings.
We'll get through this. We have to. We want to.
The answer to this could turn into a really long post. I will try my best to summarize.
We are doing ok.
I think we are having difficulty sorting out our feelings. Some of the emotions that are surfacing are confusing. The first emotion for both of us was sadness. We feel selfish for feeling sad. Sadness is often felt when something, or someone is "lost". We almost feel like we are in mourning. We didn't "lose" Macie. She is still "The Face", but we most certainly are mourning the loss of hope that she would not get this diagnosis. We are mourning the loss of a "normal" life for Macie. I say "normal" because there is no cure for Autism, no one knows how and why it happens, and this is something Macie will struggle with her entire life. I feel like we have been taken out to the middle of the jungle and dropped off with no map, no compass, no food, and no water. We were given this diagnosis, but were left with so many unanswered questions. We were left to kind of figure it out on our own. Where is she on the spectrum? Will she ever talk in sentences? Will she ever read or write? Will she ever make friends, go to college, get married. Will we ever hear her say "I love you", and know the meaning behind it. We have no idea, and it's scary and heartbreaking. (I do have hope though- please ready Kim's comment under "Question 1 post")
Maybe it sounds harsh to some that I say we are in "mourning", but I want to be honest and candid along this journey. If I am honest and candid, I just may be able to help someone else, and in the process help us.
We are also angry. Why us? What did we do wrong? We are her Mommy and Daddy, and we couldn't protect her from this. It's our job as parents to protect our kids, and we feel we failed at that. There is no concrete answer to the diagnosis so why wouldn't we blame ourselves?
Every day gets better, and every day we have different feelings.
We'll get through this. We have to. We want to.
Thursday, March 24, 2011
Emma
Emma is walking about 80% of the time. She tries to run instead of walking, she falls and then just crawls the rest of the way. She definitely is attempting to walk most everywhere. She looks too little to walk, but I am definitely excited about it. She will be able to run around the yard when the weather cooperates more!
She is chatty! She now says "all done, dog dog, ki ki, ba ba, Mama, Dada, Hi Dada, uh oh, baby, more, go go". Her mouth never stops moving unless she has a bottle, or is sleeping. Loving it!
She is learning how to use a fork and spoon, and she's mastered the sippy cups, but still prefers her Silk in a bottle. She's still using a "bink bink", but mostly just for naps and night time.
She feeds her baby doll when I tell her she's hungry. She shares all the time. She offers me her sippy cup, her binky, her food, etc. She is ALWAYS feeding Otis!
She's really warping into a toddler FAST!
Wednesday, March 23, 2011
First Question
Where is Macie on the spectrum?
We don't know. We asked the same question, but didn't get an answer. After another evaluation in approximately a year they MIGHT be able to answer that for us.
"Autism affects the way your child perceives the world and makes communication and social interaction difficult. He may also have repetitive behaviors or intense interest. Symptoms, and their severity, and different for each of the affected areas (communication, social interaction and repetitive behaviors). Your child may not have the same symptoms and may seem very different from another child with the same diagnosis. It is sometimes said, that if you know one person with Autism; you know one person with autism."
"The symptoms of Autism typically last throughout a person's lifetime. A mildly affected person might seem merely quirky and lead a typical life. A severely affected person might be unable to speak or care for himself. Early intervention can make extraordinary differences in your child's development. How your child is functioning now may be very different from how he or she will function later on in life."
Information taken from Autism Speaks, First 100 Days Kit.
I have added the link to the kit below. It has a ton of great info. for anyone who would like to know more.
http://www.autismspeaks.org/docs/family_services_docs/100_day_kit.pdf
We don't know. We asked the same question, but didn't get an answer. After another evaluation in approximately a year they MIGHT be able to answer that for us.
"Autism affects the way your child perceives the world and makes communication and social interaction difficult. He may also have repetitive behaviors or intense interest. Symptoms, and their severity, and different for each of the affected areas (communication, social interaction and repetitive behaviors). Your child may not have the same symptoms and may seem very different from another child with the same diagnosis. It is sometimes said, that if you know one person with Autism; you know one person with autism."
"The symptoms of Autism typically last throughout a person's lifetime. A mildly affected person might seem merely quirky and lead a typical life. A severely affected person might be unable to speak or care for himself. Early intervention can make extraordinary differences in your child's development. How your child is functioning now may be very different from how he or she will function later on in life."
Information taken from Autism Speaks, First 100 Days Kit.
I have added the link to the kit below. It has a ton of great info. for anyone who would like to know more.
http://www.autismspeaks.org/docs/family_services_docs/100_day_kit.pdf
Tuesday, March 22, 2011
March 21st, 2011
is the day that Macie was diagnosed with Autism. My daughter is Autistic. It stings to type that. It's a step in the right direction though. I am still not able to say the words. It's not that I am denying it, or that I don't believe it.....it's just hard to form the words and say out loud.
I have so much more to talk about, and I will. I just need some time to process this. I will blog more about her diagnosis, and the process when I can organize my thoughts a bit better. I want to talk about it, and I know a lot of you have questions. We very much appreciate everyone reaching out to us yesterday. It's so hard to talk about right now without crying, and I hope that you all know that we just need some time to process this as a family.
This little purple folder has changed our lives forever. 
I know that Macie is still Macie. I know that we still love her the same, maybe even more if that's possible, but our lives feel like they've been turned upside down. I know things "could be worse", but in our eyes, at this moment, they can't be worse. I'm guessing that feeling this way is part of the "grieving" process.
Thursday, March 17, 2011
A Piece of Paper
We have an appointment to take Macie for her Medical Diagnosis on Monday, March 21st.
She is being evaluated at 10:30 by a team of 5 professionals. There is an OT, DT, ST, Pediatric Psychologist, and a Developmental Pediatrician. They will "observe" her for about an hour, then they meet for about a half hour to discuss, and document their "findings". Then they meet with Phil and I to discuss their findings/evaluations. They may or may not have an official diagnosis at that time. The woman I spoke to yesterday told me "Macie is very young, and they may not be able to diagnose her right now." I was asked "do you want a diagnosis?". I honestly did not know how to answer that. Then I began questioning if we should have this done or not. Do I want a diagnosis? Well.....No, no parent wants their child diagnosed with a disability. Do I want a diagnosis? Well......yes, I want to know what we're dealing with here. I want to put a name to it, for my own sake. It may come off as selfish to want this, but I don't care if it seems that way. This appointment, and the outcome do not affect any therapy that Macie is receiving now. It does not affect her in any way when she goes to school in September. It's a piece of paper that might give us a more concrete explanation on what is going on with Macie. It's a piece to the puzzle I guess.
She is being evaluated at 10:30 by a team of 5 professionals. There is an OT, DT, ST, Pediatric Psychologist, and a Developmental Pediatrician. They will "observe" her for about an hour, then they meet for about a half hour to discuss, and document their "findings". Then they meet with Phil and I to discuss their findings/evaluations. They may or may not have an official diagnosis at that time. The woman I spoke to yesterday told me "Macie is very young, and they may not be able to diagnose her right now." I was asked "do you want a diagnosis?". I honestly did not know how to answer that. Then I began questioning if we should have this done or not. Do I want a diagnosis? Well.....No, no parent wants their child diagnosed with a disability. Do I want a diagnosis? Well......yes, I want to know what we're dealing with here. I want to put a name to it, for my own sake. It may come off as selfish to want this, but I don't care if it seems that way. This appointment, and the outcome do not affect any therapy that Macie is receiving now. It does not affect her in any way when she goes to school in September. It's a piece of paper that might give us a more concrete explanation on what is going on with Macie. It's a piece to the puzzle I guess.
Wednesday, March 16, 2011
Bear with me
I have not one single organized thought it my head today.
These are the things that are rattling around in my brain today.....
How long do refrigerators typically last? Ours is 4 1/2 years old. I've hated it since the day we got it, but I don't want it to be on the fritz already. We have too many other things to replace right now. I pulled a water out from the top shelf, and it's a water slushy. Nothing on the other shelves is frozen. This hasn't happened before.
There is a cardinal in our yard as I type. Spring is getting here slowly!
I do not want to work at my evening job anymore. I get home late, and don't make much money. I don't mind working, and contributing, but it's awful to "work" all day and then have to go to another job.
I actually get a little excited when Macie shows jealousy towards Emma. It's not for selfish reasons (such as.....awwww look, they both want Mommy), it just reminds me that Macie is making progress, and she is showing emotion more and more everyday.
I ask the question every.single.day- "why me?". I wouldn't have it any other way, but on the hard days I have that very question....then I feel guilty for wondering.
I analyze EVERY move Emma makes....looking for a sign that something is "off" with her too. Do I get her evaluated, or do I wait?
I want to be that parent that complains about their kids talking their ears off. I am so jealous, and sad. When we are driving in the car I plead with Macie to have a conversation with me. She smiles at me, and continues to look out the window. I still talk her ear off, and I sing to her, but I want her to talk back to me! Silence is NOT golden around here!
And HERE is where I would like to be someday. I literally just got this link to this blog as I was typing this post. Coincidence???? I'll stop here, and go take a pill! You might need one too after reading this. Welcome to my head.....EVERY.SINGLE.DAY! You may make a brief visit once in a while, but I don't recommend staying long.
These are the things that are rattling around in my brain today.....
How long do refrigerators typically last? Ours is 4 1/2 years old. I've hated it since the day we got it, but I don't want it to be on the fritz already. We have too many other things to replace right now. I pulled a water out from the top shelf, and it's a water slushy. Nothing on the other shelves is frozen. This hasn't happened before.
There is a cardinal in our yard as I type. Spring is getting here slowly!
I do not want to work at my evening job anymore. I get home late, and don't make much money. I don't mind working, and contributing, but it's awful to "work" all day and then have to go to another job.
I actually get a little excited when Macie shows jealousy towards Emma. It's not for selfish reasons (such as.....awwww look, they both want Mommy), it just reminds me that Macie is making progress, and she is showing emotion more and more everyday.
I ask the question every.single.day- "why me?". I wouldn't have it any other way, but on the hard days I have that very question....then I feel guilty for wondering.
I analyze EVERY move Emma makes....looking for a sign that something is "off" with her too. Do I get her evaluated, or do I wait?
I want to be that parent that complains about their kids talking their ears off. I am so jealous, and sad. When we are driving in the car I plead with Macie to have a conversation with me. She smiles at me, and continues to look out the window. I still talk her ear off, and I sing to her, but I want her to talk back to me! Silence is NOT golden around here!
And HERE is where I would like to be someday. I literally just got this link to this blog as I was typing this post. Coincidence???? I'll stop here, and go take a pill! You might need one too after reading this. Welcome to my head.....EVERY.SINGLE.DAY! You may make a brief visit once in a while, but I don't recommend staying long.
Tuesday, March 15, 2011
Amazing
Yesterday Macie had the "Marathon therapy day". She had speech at 10:30, OT at 1:00, then DT at 5:00. She did AWESOME! When the OT was packing up and getting ready to go, I was wiping tears of joy from my eyes, and she said "it's days like this that remind me why I do what I do."!
Macie has been doing very well in therapy all along, but yesterday was different. It was a breakthrough day for her. Macie actually initiated play with the therapist, she referenced her while playing, and she allowed the therapist to touch her through most of the hour. After Macie was done with her dance party, and letting the therapist pick her up into the air, she sat down on the floor. The therapist had 12 rings, 6 colors (2 of each). Macie went over to them and paired them up by color, and placed them in a row on the floor! I could hardly believe my eyes. I am constantly working with her on colors, numbers, alphabet, but always have the thought in the back of my mind that she's just "not getting it". I hate having those thoughts, but I can't help it. Despite the thoughts, I keep going and keep teaching her, and reading to her, etc. I was so proud of her, shocked, and amazed all at the same time. We celebrated all day....we're still celebrating!
Then DT came at 5:00. I had a feeling that Macie would pretty much be done by this point, but wanted to give this schedule a shot. The therapist had to move our appt. from Tuesdays to Mondays. This meant that she would have THREE hours of therapy on Mondays. I was nervous she would be too tired, hungry, etc. She did amazing with her too. The therapist has a Candy Land Bingo game. Macie picked out the Green Gingerbread Girl game piece first. She waited and took her turn, AND when the pieces came out of the gingerbread house she matched them by color and shape on the board!!!! She got each and every one of them right!
We are two extremely proud, happy parents!!! She has been "different" the past two weeks. She is more focused, attentive, playful, calm, loving, happy, etc. She loves playing in front of a mirror and checking herself out, she loves playing in her room and having dance parties with Mommy and Emma. I asked her yesterday if she wanted to draw with the blue, or green marker and she said "blue".
This is all HUGE!
Thursday, March 10, 2011
Macie's 2 1/2 Year Check up
Wow..... TWO AND A HALF??? How did that happen?
We took both the girls today to have follow up checks on their ears. Both are fine, and clear!
Macie's stats
Weight - 33lbs. (90th percentile) Advice from Dr. "watch the snacks".
Height - 35 inches (90th percentile)
Both are surprising since I thought she was "thinning out", and height isn't on either side! She's losing the cute little leg rolls, and that's kinda sad!
We took both the girls today to have follow up checks on their ears. Both are fine, and clear!
Macie's stats
Weight - 33lbs. (90th percentile) Advice from Dr. "watch the snacks".
Height - 35 inches (90th percentile)
Both are surprising since I thought she was "thinning out", and height isn't on either side! She's losing the cute little leg rolls, and that's kinda sad!
Emma's One Year Pictures
There are tons, but here are just a few.
I like them, but Kim does a WAY better job!!!!
I like them, but Kim does a WAY better job!!!!
Monday, March 7, 2011
Monday Madness
Silly Face
She looks so grown up in this picture- sniff sniff
I've taken a little break from blogging lately, and I feel a little unorganized when I try to sit down and do a new blog. With that said, I am just going to make this a random post. And.....it's now Wednesday and I am just getting around to writing some more on this blog.
My Mom had back surgery on Thursday, February 24th. Unfortunately she is still in the hospital, but getting better, and stronger everyday. We very much appreciate all the calls, e-mails, cards, flowers, gifts, prayers, and positive thoughts everyone has given! She did come home last night, and is doing well- YAY!
Macie started with her new speech therapist, and she is wonderful. She has seen a lot of progress from Macie in just 4 short sessions. I have also seen some changes in Macie, and it makes my Mommy heart smile! The therapist has given me a ton of "homework", but I know it's all for the good so I am doing it very willingly!
Emma is walking a lot more now. She gets the jelly legs quite often, but she's getting good. She never stops "talking". She now says "buh bye, dog, hi dada, done, O's, bubble, ba ba, ki ki, baby". She NEVER gives up on trying to play with Macie. Macie kicks her, hits her, pushes her down, and Emma just keeps going back for more. There are a few times I catch them playing together, drawing together, holding hands, but it's always short lived.
We decided not to go with the team at Children's Memorial to do Macie's Medical Diagnosis. After talking to many people, we felt that Illinois Masonic was a better option for all of us. I am still waiting to hear from them to schedule her appointment. They are about 2 months out with appointments, and I am ok with that. I know in my heart what the diagnosis is, we just have to make it "official" I guess.
Both girls have been sick on and off FOREVER!!! I am sick of taking them to the Dr., I am sick of boogers, sick of them being miserable, and I am sick of this crappy weather. Can't wait to be outside more! They both have a check up for their ear infections tomorrow. Hopefully they are cleared up!
I signed up for Weight Watchers again. It was very successful for me the first time around so I decided to do it again. I lost 2.5lbs this first week- yippee! I am doing it all online this time around and it's really great. I can track everything, get recipes, etc. I got rid of my gym membership, it's just too hard for me to find time to go. I do workouts at home, and it's just perfect for me! My goal is to lose about 15ish more pounds.
Wednesday, March 2, 2011
Get better soon Grandma!
I keep trying to mail Macie to the hospital, but they keep sending her back!
We sure miss you tons!!!
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