A Few of the things Macie has taught me

1.  Patience
2.  "I love you" is just words.  How you show it- that's where the meaning is.
3.  Tolerance
4.  To celebrate the small things, because those small things.....are actually HUGE!
5.  There is nothing stronger than a Mommy's intuition.
6.  That there is a long road ahead, and I don't want to travel it with anyone one else but her!

7.  The light at the end of the tunnel isn't always so bright, but something as simple as a kiss, or hug can make that light just a little brighter.




A quote I read:  "I would not change my Daughter for the world, but I would change the world for my Daughter."  Author Unknown

Well said

This was posted on Facebook, and I wanted to share it with my readers' (if there are any left).
Very well said!

http://mamabegood.blogspot.com/2011/12/shocking-news-autism-has-not-ruined-my.html

Happy Girls'

The weather has been AWESOME lately, and this makes for some happy girls'.....and a happy Mommy!

Unloading my brain

I haven't really blogged in a while, and I don't really know why.  Too busy?  Maybe.  Too tired?  Could be.  Too lazy?  Likely.
Do you ever feel like you get so far behind on blogging that you just can't catch up?  I sit down and start an entry and I get bored with myself.  I can only imagine that anyone reading the blog is WAY more bored than I am.
Anyway.......here's the scoop with the girls:
Macie is doing very well in school.  She had a few rough patches the last few weeks, but she recovers pretty quickly.  Two new little boys started in her class recently and that upsets her.  They are upset in school, and that gets her going.
Her receptive language is blossoming right now.  I can ask her to pick something up, and she will do it and bring the item to me.  It's not 100%, but she's making huge gains in this area.  When I grab a diaper and ask her to lay down, she finds a spot on the floor and lays down for me.  Sounds so basic, but before changing her diaper involved some pretty hard core wrestling holds.   She's doing great with her schedule at school.  She is using the icons on there appropriately (eg.  She brought the "change diaper" icon to one of her teachers when she pooped).  She's doing AWESOME at puzzles, matching, numbers, colors, sharing, drawing, cutting with scissors.  She plays Duck Duck Goose, she knows a ton of hand and body moves for songs.  She's slowly learning to point to body parts, and wave good bye.  We are so very proud of her, and how hard she is working.
Emma is a total clown.  She is speaking in complete sentences, and it just blows my mind.  An example:  we were driving past a church the other day and she said "Mommy, I want to go to the Castle."  "I princess."  She just cracks me up!  She is also in the "terrible two" stage I think.  She won't eat anything I cook, and throws her food across the table while saying "No, I don't want it!".  Then she says "I want chips.  I want cookie.  I want "yummies".  We tell her "NO", and she throws a fit.  When she throws her fit it gets Macie really upset.  She covers her ears and starts crying.  Dinner time is really fun around here lately.  Last week Emma learned about going to bed without dinner.  When I got her up in the morning her little tummy was growling.  Needless to say, she scarfed down breakfast like she hadn't eaten in a week.  Lesson learned?  Not a chance!
She very opinionated, she knows what she wants, and she does not hesitate to let you know!  My Mom calls this PAY BACK!!!

My mental state is still very up, and down.  I have days where I want to dig a hole, climb in, and never come out.   I also have days where I feel like I can conquer the world, and I want to scream it from the rooftop.  I was filling out a survey for an autism website where I was trying to win an iPad for Macie.  The second to last question on this survey was:  "Would you take away your child's autism if you were able?"  Without hesitation I said "heck yes I would.".  The last question asked "would you take it away even if the qualities you love about your child went away?"  I became stumped, and angry, and I felt like a horrible Mother for answering the way I did.  I almost stopped right there and deleted this survey, but if I can't be honest with a stranger....how can I be honest with myself, or my family?  After I thought about it I said "I love everything about my daughter, autism, or no autism.".  I love her quirks, her personality, how she lights up when Daddy walks in the room, how excited she gets when her favorite cartoon comes on.  I love how she doesn't judge, and accepts everyone and everything the same.  She doesn't know how to lie, or discriminate.  These are qualities that come with autism.  Would I want to trade in the autism for those traits?  No, not ideally.  I love Macie no matter what, and that will never change.  I would love to be able to teach her not to lie, discriminate, and to accept people as they are.  If I took away the autism I would be able to teach her these things.  By not taking away the autism she will be subjected to these things throughout her life.  It breaks my heart that she is going to struggle her whole life in one way or another.  She has many sensory issues, she needs routine, she doesn't speak, and we don't know if she ever will.  She has quirks (rocking, spinning, flapping her arms) that are "socially unacceptable".  EVERY. SINGLE. DAY I worry about her getting older and being bullied because she's "different".  I worry about her not being able to make friends because of her social anxieties.  I already see people looking at Macie differently.  She's at that age where she should be able to speak, and not just grunt or tantrum.  When you look at her, and she's calm, relaxed, happy- you would never know anything is wrong.  When she wants something she gets upset because she can't tell us what it is that she wants.  When she gets excited she flaps her arms.  When she's on the playground, she watches the kids from a distance, she approaches them, flaps her arms and then backs away because she does not know what to do socially.  THEN....add in the fact that she is a girl- there are so many people that don't understand that autism affects girls too.  It's hard to be starred at when out in public.  People tell you not to worry about what others think, but it's human nature for most to care.  It's also human nature to care about someone judging you and/or your child when you have no control over it.  It makes my mind race, and wonder how things are going to be years from now.

So.....moral of the story:  I would take away the autism if I could.  I realize all children have struggles, and I realize she would still have struggles but she wouldn't be "trapped" like she is now.

Look what Macie did!

I gave her a bunch of pieces of construction paper......

and she did this!  I did not help her at all!!!!  AWESOME!

Emma's 2nd Birthday Party

She had a BLAST!!!!  It was so fun to watch her open her presents, and run around with all the other kids.
Macie had a great time too.  Thank you to everyone who came, and for all the help, and wonderful gifts!

Sweetheart Dance

Daddy is accompanying Macie to her first dance tonight.  Her preschool is having a "Sweetheart Dance".  So adorable.

Emma is TWO!

Dear Emma-

You turned two yesterday!  Mommy is behind on this post, but you keep me very busy these days and there is not a whole lot of time to sit down and type.
You are two, going on 20!  The things that come out of your mouth just amaze me.  You are such a little sponge, and we have to be so very careful about what we say to you.  You don't repeat things right away that you hear.  You store them away in your little brain to use appropriately at a later time.
Some of the things you are saying as of recent:
"Thank you for opening my cereal, Mommy."
"Good Morning Honey, I missed you."
"I two!"
"Birthday party on Sunday."
"Mommy!  Poop!" (when you have to poop....not me)
You say goodbye to everyone and every thing "Bye flowers, see you soon!"  "Bye Otis, Night Night!"
You love to sing songs:
The clean up song- "cean up cean up, ashes....." (you like to combine songs)
"Twinkle little star, up above the sky."
"La la la la la.....put your hands up, put your hands up"
"Mommy duck says quack, quack, quack."
We could read you 100 books a day, and it still would never be enough.  You love to "draw paper", and play with stickers.
You love telling on your sister.  "Macie, no climb- get down!!!"  You are my second set of eyes and ears when it comes to Macie doing things she should not be doing.
You LOVE helping Mommy clean.  You grab a towel and wipe the floor, cabinets, tables, etc.  You love playing with the swiffer vac, and the broom.
You know all your body parts, and how to undress yourself completely, including your diaper.  You love being "nakey", and it's near impossible to get you dressed.  I have to put your coat on at least three times before we make it out the door.
You love George, your babies, the Backyardigans, Bubble Guppies, Caliou, having picnics, blocks, chasing your sister, and countless other toys and games!  You LOVE playing dress up with all your Princess outfits, and you put them on and say "ooooh peeeety, mirror!"
You can count to ten, and you know part of your ABC's- I think you are up to J now.
You give tons of hugs and kisses, and you know exactly when Mommy, and Daddy need hugs and kisses.  You are just the sweetest, funniest, happy (for the most part) little girl.  Every day is an adventure with you, and I love that you learn/do something new every day.  You are my shopping buddy!  You are so friendly, but yet have a shy side too.  You have to warm up before  you get going.
The last two years have been such a wonderful adventure!
Happy 2nd Birthday, Princess Emma!
Mommy and Daddy love you so much!

It's BAAAAAACK!!!!

Anyone remember THIS post?  I certainly do!
Well, it seems to be back.........
I have been doing some research, and it's very unlikely to get Fifth Disease twice....it's kinda like chicken pox.
So.......what is it then?  It's been less than a year since she had it.
UGH!

Macie's First "Report Card"

It's actually called "Report of Progress on Annual Goals".
The purpose of the report is to describe the IEP (individual education program) goal update process that they use across the district.

I wish our scanner worked, would be so much easier than typing it all out, but I am too proud to not share right away :-)


Goal #1:  By Jan. 2012, Macie will match any 5 identical items (e.g. inset puzzles, toys, objects, or pictures across 4/5 attempts
Report of Progress:  Completed!!!
Additional comments:  Met for a variety of objects and pictures.

By Sept. 2012, Macie will sort similar colors and shapes for 10 different colors or shapes give models (e.g. given re, blue, and green bowls and a pile of re, blue, and green bears, the child sorts the items by color) across 4/5 attempts
Report of Progress:  Making expected progress!!!


Goal #2:  By Jan. 2012, Macie will search for missing or corresponding toy or parts of a set for 5 items or sets (e.g. a puzzle piece, a ball for a drop in toy, a bottle for a baby doll) across 4/5 play occasions.
Report of Progress:  Completed!!!
Additional Comments:  Met for preferred puzzles, baby doll activities, a ball for a drop toy, nesting cups, and matching activities.

By Sept. 2012, Macie will assemble toys and independently play with toys that have multiple parts for 5 different sets of materials (i.e. Mr. potato head, Little People sets, cooties bugs, etc.) across 4/5 play occasions
Report of Progress:  Making expected progress!!!


Goal #3:  By Jan. 2012, Macie will imitate 1 gross motor movement when prompted "do this" (e.g. clap hands, raising arms, rolling fists, patting lap, stomping feet) across 4/5 occasions.
Report of Progress:  Completed!!!
Additional Comments:  Met for clapping hands, rolling fists.

By Sept. 2012, Macie will imitate 20 multi step movements of any type (fine, gross, imitation with objects, imitation with people) across 4/5 occasions.
Report of Progress:  Making expected progress



Goal #4:  By Jan. 2012, Macie will identify 5 novel pictures of common objects, preferred toys, actions or people with 80% accuracy given fading, visual, or verbal cues.
Report of Progress:  Not making expected progress  :-(

By Sept. 2012, Macie will identify (find ___, give me___, point to___) 15 novel pictures of common objects, preferred toys, actions, or people in a field of 2-3 pictures with 80% accuracy given fading visual, or verbal cues.
Report of Progress:  Not making expected progress  :-(
Additional comments:  First introduced receptive skills with photos of family members.  We will continue the task but switch to pictures of functional items that she uses every day.

I talked with her teachers' about this, and they feel Macie knows who we are, but they get the feeling that she is not understanding why she should have to tell them something she already knows.  This is also a large component to communication, and she's definitely struggling in this area.


Goal #5:  By Jan. 2012, Macie will use verbal (i.e. single word utterances), or nonverbal language (i.e. signs, PECS) to mand (request) during classroom routines or activities at least 5X a day for 3 consecutive days given fading adult visual or verbal cues.
Report of Progress:  Completed!!!
Additional Comments:  Met for at lease 5X when PECS book is placed in front of her, primarily at a learning session and at snack.  Taking ownership of her book and carrying it around is an emerging skill.

By Sept. 2012, Macie will use verbal, or nonverbal language to mand during classroom routines or activities at least 20X a day for 3 consecutive days.
Report of Progress:  Making expected progress!!!



Goal #6:  By 9/12 Macie will demonstrate the ability to sustain in visual attention to hold scissors and paper in a thumb up position to cut within 1/4 inch of a line with visual prompts.
Report of Progress:  Making expected progress!!!
Additional Comments:  Macie picks up small loop scissors independently and maintains functional scissor grasp after occasional physical assistance.  She cuts on 3-4 inch lines on construction paper strip.


Goal #7:  By 9/12 Macie will make progress toward coordinating movements to perform complex tasks by demonstrating the ability to sustain visual attention and body awareness to use a mature grasp pattern when holding a writing tool to imitate then copy vertical, horizontal and circle writing strokes with visual prompts.
Report of Progress:  Making expected progress!!!
Additional comments:  Macie is doing well with imitating vertical and horizontal lines.  Imitating circle is emerging, she continues to work on consistent closed circles.  Macie also continues to work on consistent functional grasp on the writing tool.


We are definitely very pleased with the progress Macie has made in the short time (4 months) that she has been in school.

Daddy's and their Daughters

I was surfing the internet last week, and I ran across THIS list.  It's a great list, and it should be followed by every Man that has a daughter.  There are so many good, and important points in there.  #15 really touched me a lot, and I will tell you why.....
In 1975, when my Dad was just 30 years old, he was diagnosed with Hodgkin's Disease.  I was only two at the time, and my brother was six.  On the Thanksgiving following his diagnosis my Mom was told that my Dad only had about five months to live.  I can not even begin to imagine what she went through after hearing that.  Had to be devastating!  After receiving surgery, chemotherapy and radiation, my Dad miraculously beat the cancer.  He went into remission until the cancer showed up again in 1982.  He went through surgery, chemotherapy and radiation again, and he beat the cancer again.  He has been in remission since then, and has dealt with many more health issues as well.  My Mom has also had some pretty serious medical issues/scares, and I would swear they both have 9 lives each!  It's said "what doesn't kill you only makes you stronger", and they are proof of that!
Fast forward to July 1st, 2006- my wedding day!!  I was 33 when I got married, and I am pretty sure we were all convinced I was never going to find "Mr. Right".  While planning the wedding, we were working on all the dances that would take place.  My Dad is pretty quiet for the most part, and does not like being fussed over, or being the center of attention.  After Phil and I talked about it, I called my Mom and told her we were thinking of doing the Father/Daughter dance, and the Mother/Son dance as a combined dance.  We figured if all four of us were on the dance floor together, there wouldn't be so much attention focused on my Dad.  I should also mention that he was a little nervous at that time since he had a bit of a limp from his hip replacement.
My Mom brought the idea up to my Dad that day.  When she told him our "plan", he got very quiet.  My Mom asked him what was wrong.  He told her that he was really looking forward to that dance with me because the last time he went in to remission his Dr. told him "you are going to live long enough to dance with your daughter at her wedding.".   Needless to say, my Dad and I had the dance floor all to ourselves for that very special dance that his Dr. promised him 24 years prior!

**I forgot to tell you to have a tissue handy for this post**

Christmas- 2011

Hope everyone had a wonderful Christmas!  We sure did!
We went to my cousins house on Christmas Eve.  We had the girls dressed in matching outfits, and they looked adorable!  I was a little nervous on how it was going to go with Macie.  She wouldn't nap at home that day, but of course fell asleep in the car when we were about 5 minutes away from Mike and Jackie's house.  I have to say the night went pretty well.  Macie had a few "moments", but overall she did really well.  She didn't want to open gifts, but that's understandable.  My family was so great with helping to make sure Macie was comfortable, and had everything she needed.  She is thoroughly enjoying all of her presents now that we are home with them!  Emma was loving opening all her presents, and she's non-stop playing with everything she got!
Christmas Day we went over to my parents' house.  We had some appetizers, opened gifts, and then had a HUGE dinner!  The girls were spoiled beyond belief, and they both had a great time!  Macie didn't participate in the gift opening again, but she does love all her gifts!  Emma opened all her gifts, and most of Macie's.  She was so cute, and said "wow", and "oh, petty" for most everything.  She also tried showing "Cie Cie" all her gifts and "sharing" them with her.  We got her best reaction came from the Curious George stuffed animal that "Geeba", and "Papa" got her.  She hasn't let him out of her sight since she got him....so cute!!!
Thank you to everyone for all the very generous gifts, and for helping to make sure my girls had a wonderful Christmas celebration!