Happy 4th Birthday, Macie! (Warning-Picture heavy)

My "baby" is 4 today!  Seems another year has flown by as I blinked.

Happy Birthday to my everything- "The Face".

You have come so far this past year.  Too many things to list in fact!  Mommy and Daddy are so proud of how hard you work in school, in therapy, and at home.  You are such an amazing, sweet, smart, energetic, funny, beautiful little girl.  You have taught us so many valuable things in your four years with us.  You have made all of us stronger, more patient, more caring, and have taught us that it's so very important to celebrate the small things!

You amaze us every day, and I am so glad we were so fortunate to be chosen to be your Mommy and Daddy!

xoxo

Therapy via blogging

Something awful happened last week that has changed my life (and Phil's) probably forever.  I'm told that I will need to talk about it often, and that I will probably need some counseling at some point.  I have decided to "talk" about it here first.  The reason for that is the fact that I feel this is something that is very difficult to discuss with those that have not experienced something of this nature.  It's hard to imagine telling people details, and not making those people uncomfortable.  Maybe if I write it here someone that has been through this may have some helpful words for me/us.

I will make the story short for now.  There is so much to tell, but the end result is the tragic part, and that's what I want to "get out".

Last Monday I had an overwhelming feeling that something was wrong with our neighbor.  I hadn't seen his car leave for two days, and his dog was going in and out the back door on her own (the door was propped open).  There were also some lights on in his house that I rarely ever saw on.

I contacted our other neighbors' to ask if they had seen/talked to him- they had not.  I sent a text to them saying "something is very wrong".  That neighbor has a key to his house so asked if Phil would come over and go in with him.  They rang the bell a few times, and no answer.  Our neighbor walked in first, Phil was next and then me and my neighbors girlfriend were behind them.  We got in the house and found that our neighbor had taken his own life.

He was a husband, father, son, uncle, friend to many.  I am sad, angry, and not sure I will ever get this out of my head.  If you know anyone that suffers from depression, is having a "tough time" in their life DO NOT be afraid to ask them if they are ok, or if they need help.  I don't know if anyone could have prevented this situation, but I certainly would have tried harder had I had any indication that this would happen.

Getting ready for Preschool-2nd year

Macie starts her 2nd year of preschool on Monday.  Phil took Macie to the Dr. yesterday to get her check-up.  Unfortunately I can't take her anymore because I am not strong enough to battle her while the Dr. tries to examine her.  Poor Phil- he looked exhausted when he got home.  Macie just cried the whole time and wanted NOTHING to do with being examined.  They got through it, and she's ready to start school.
They just did her 4 year well visit while she was there since it's coming up.
Her stats:

Weight- 40lbs. (90th percentile)

Height- 39 inches (50th percentile

Hope

We're still here, just busy with summer which seems to be flying by, and coming to an end!  Hopefully I will be able to get back to blogging.  I am so far behind with updates!

I did want to share a story for now.

We were invited to our neighbors' BBQ this past weekend, and we met a woman that gave us some hope for Macie.  I was playing with all the kids in their trampoline, and there was a little girl (10 years old) playing with all the younger kids (ranging from 2-5).  This 10 year old girl was such a "Mama Bear" with all the younger kids.  She was telling me all about her sisters', talking about school, etc.  She was so sweet with helping the kids get in and out of the trampoline.  Phil came up to me, and we were talking about how much fun Macie was having, and how well she was interacting with all the other kids.  Phil turns to me and says, "you know the girl in the purple shirt (the 10 year old) has autism?"  I didn't believe him, but he told me that he had been talking to her Mom about it for quite a while.  I would have NEVER guessed she had autism.

I ended up speaking with her Mom for quite a while, and am just amazed at how far they have come.  She told me that two of her three daughters' have autism.  Her ten year old was not diagnosed until 5 years old, and her 11 year old was not diagnosed until just a few weeks ago.  She had to fight Dr.'s, insurance companies, and schools for many years to get a proper diagnosis.  Her younger daughter that was at the BBQ was misdiagnosed from the beginning.  The Mom was told that her daughter would never walk, or talk!  Her Mom told me that she is on several medications that help her with her quirks, sensitivities, etc. that help her focus and learn.  She said without the medications, her daughter is a different kid.  I certainly commend this Mom for doing whatever she had to do to get her daughter where she is today.  It was amazing to see, and hear about.

She told Phil that she took her 10 year old to a Sox game recently.  At one point her daughter was overwhelmed with all the noise so she put her hands over her ears and was screaming.  There was a group of people sitting behind them that said to the Mom- "could you please take your Daughter out of here if she is going to scream!".  The little girl turned around and said "I'm sorry, I have autism and all the noise is really bothering me."  AWESOME!  Needless to say, the people apologized and didn't say another word!

Stories like these definitely give us some hope!

Macie finished her first year of Preschool

Macie completed her first year of preschool this past Wednesday.  She completed her first 8 months of school with perfect attendance too!  She will be going to summer school starting on June 13th, but it's only Monday through Thursday from 8am to 10:45am.  I have to admit, I am a bit nervous about her being home from school.  She really thrives on routine, and having a week and a half off then going back to school with a new teacher, and new hours......could be scary for all of us!

I am so grateful that she was able to attend preschool early, and that she had some really amazing teachers' this year.  We are not 100% sure she will have the same teachers' next year, and that definitely makes my anxiety peak.  I know it's not a bad thing for her to be with new teachers', but the group of teachers' she had really got to know her so well.  They know what makes her tick, and it took a long time for them to figure that out with her.

I am in the process of contacting some speech pathologists to get her some private speech therapy over the summer.  Hopefully that will help fill some of the gaps that she will have with not being in school.

Here is a list of SOME of the wonderful things Macie has done/learned this year in school:

Drawing pictures instead of just scribbling
Communicating with pictures
Sign language
Matching pictures
Puzzles
Turn taking
Motions to songs
Reading along to books
Colors
Counting
Stacking appropriately according to size
Following simple instructions
More vocalizations
More affectionate
Meltdowns are pretty nonexistent unless she's exhausted
Pointing to objects
Her eye contact is AWESOME
Waving "Hi", and "Bye"

All of these things she learned are so bittersweet for us.  They are things that come so easily for a "neuro typical" 3 year old, but we are so happy and proud of her.  Macie works very hard to learn all these things.  I hate seeing her struggle, but know that she's making progress and that makes us hopeful.

Blurbs

It's been so long since I posted! Would love to make excuses, but I have none! I'm taking the lazy route and doing bullet points.

Added some pictures for your viewing pleasure ;-)

The girls' LOVE their new swing set!!!

WEEEEE- Think this was right before she fell on her face!

My beautiful, big brown-eyed girls'

Playing together- a rare thing.

Emma had an important phone call, but manages to keep playing.  

She looks so old in this picture- sniff sniff

 -Emma had her 2 year check up last week. She had an ear infection I knew nothing about, and she has a gigantic head (98th percentile). She's around 70th percentile in height and weight. The Dr. Was shocked at how much she talks and can carry on a full conversation with her.

 -Emma was doing really well with potty training, but that kinda came to a halt. She's in the control stage now and she will only go when she feels like it. We are not pushing it since she is only 2.

 -Emma sings her abc's, she counts to ten, sings happy birthday, the itsy Betsy spider, ring around the rosie, wheels on the bus, and more....it just amazes me every day.

-Emma's development is so bitter sweet for us. We are so amazed with her, but sad for Macie because all the things she says and does are trapped inside Macie.

 - The closer Macie gets to being 4, the more I worry about her never speaking. We've come to terms with her most likely being "low functioning", but it still stings!

-Macie is doing well in school, she is progressing in so many areas. She still struggles with receptive language. She gets frustrated easily because she has so much to say, and just can't find the words.

-Macie has been so affectionate lately. She hugs her teachers, she gives me impromptu kisses all the time, she will give kisses to her grandmas', papas', aunts', uncles',etc. when we ask her too. Her eye contact is really great. She's drawing faces at school, cutting with scissors on her own, pretend playing with dolls!

 -I am nervous about her not being in school full-time this summer. She will be going to summer school, but it's half the time. We are also working on getting her private speech therapy over the summer so hopefully that will help her.

-she is signing more words- all done, listen, my name, more, etc. she is amazing at puzzles, and doing motions to many songs.

-I have to admit I had a little breakdown in the car this morning....I saw three moms walking with their kids to the park. I was so envious. I am unable to just take a stroll to the park, or go to the store because Macie wanders. It makes me very nervous that I won't be able to handle both girls' by myself. I would give my left arm to be able to set up a play date for my girls' but we can't do a lot of things unless they are in a fenced in yard! It sucks!!! I am thankful we have a fenced in yard, a swing set and a pool so the girls can play, but I tend to feel caged after some time.

 -Macie is getting better about listening when we tell her to stop, or come here, but I am still nervous. We still celebrate these victories....don't think we are only dwelling on the struggles. I think any mother of an autistic child feels lonely, left out, inadequate at times....we just can't let our children know we feel that way. I know that Macie's mood is very dependent on mine a lot of times.

 -That's all I have for now. The girls need to get up and enjoy this awesome weather!!! Sorry if this was difficult to read....did it on the iPad.

Ryan Gosling/Adventures in Extreme Parenting

I LOVE Ryan Gosling.......it's no secret.  I stumbled upon another blog called Adventures In Extreme Parenting (http://www.extremeparenthood.com/)   I love it.  She has two boys on the spectrum, and she's hilarious.  She does a post every week that involves a picture of Ryan Gosling, and she adds a caption and/or others add captions.....they are GREAT.  I highly recommend checking some of them out if you have a child with special needs....even if you don't!

A setback?

This past week has been extremely difficult.  I think more on myself than Macie, or Daddy, or Emma.  I know that I bring on these "episodes" myself, and I tend to over think, over analyze, and dwell on things I can not change.
Last weekend I noticed Macie doing a lot of sensory seeking.  When I say sensory seeking I mean:  chewing things, climbing (more than usual), "zoning out", stimming more (rocking, staring at her fingers, spinning).  I thought I was just over thinking things, but then I got the dreaded phone call from her teacher.  She was asking me if we had made any major changes at home, or if Macie's routine changed significantly.  I told her "no" to both questions with a lump in my throat the size of Texas.  I say it all the time, but regression is my biggest fear with Macie, and this last week it seems like she is regressing back to some of her earlier behaviors.  I can't put my finger on it, but something is going on with her.  I went to wake her up from a nap one day last week and I got the blank stare.....the one where it seems she doesn't know who I am.  She doesn't get upset, she doesn't push me away.  She just stares with no expression on her face.  Are they seizures?  I've always wondered.  From what I understand, kids with autism sometimes also have a seizure disorder.  They aren't necessarily the seizures you might be thinking of (where they shake, and thrash, etc.).  They can sometimes just be a temporary "zoning out".  They aren't dangerous, just a bit unsettling and I am not even sure that's what it is.
I too have been in a "funk" for a bit.  As Emma is developing, and talking SO much, saying her ABC's, counting to 10, forming sentences, having conversations with everyone, I find myself sad for Macie.  She is struggling to communicate in every way.  She doesn't use sign language, she's still struggling with PECS, and she is still struggling with her receptive language.  We got another report card last week for Macie, and she is meeting, and exceeding all the goals set for her except the receptive piece.  She is making progress, just not the "expected" progress.  With her not being able to communicate effectively she gets frustrated very easily, and it's hard to calm her down and teach her what she needs to communicate- she shuts down.  It makes me very sad to know that she probably has a lot to say, and she can't.  I want to play dress up with her, have picnics, and do all the things with her that Emma is loving right now, but we can't!  She's very resistant, and withdrawn right now.  Emma tries so hard to help her by bringing her toys, food, water, etc., but Macie either gets mad, or ignores her.
We took both the girls to Airtastic on Saturday.  They both loved it, and had a blast running around, bouncing, sliding, etc.  There were two separate occasions that I ended up in tears.  They were situations that had to do with Macie, and she had no clue that either situation was even happening- that's good, but I was aware, and it was just a reinforcement of  how behind she is socially.  I don't know that she will ever have the ability to make friends, and it just breaks my heart.  I want her to have friends' and experience all the great things that I did as a child, and all the great things that Emma is experiencing.
It's so hard trying to be "tough", and not show my real feelings all the time.  I keep a lot of it in because I know that my mood affects Macie sometimes.  The "experts" say that you go through a grieving process when your child is diagnosed with autism.  I agree with that 100%, but I don't believe that any parent who has a child(ren) with autism ever completes that process.  I keep thinking I am getting through it, but then something happens and I go back a step or two.  With autism there is no closure, no answers, no cure, and it's frustrating.  There are so many ups and downs.  We certainly celebrate the small things, but we are realists, and we are human therefore we also grieve the unknown.

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!