The beginning of new school year struggle

New house, new school year and it’s tough all around. Macie will get better but it takes some time. Life with a child with autism is never easy no matter where they are on the spectrum. I don’t feel we are “worse off” than anyone else, we just have a different struggle. Macie is almost 10 years old and is non verbal. My Momma heart knows she will never speak. It’s a very tough pill to swallow. She is so smart, so fun and so loving but her frustration with not being able to speak is difficult for anyone that knows her and interacts with her. She gets angry when we don’t  know what she is trying to tell us. She starts to self harm when we don’t get what she needs. As a Mom this is an awful challenge. Your child has a headache, a tummy ache, someone hurt their feelings, etc. A verbal child can vocalize their discomfort. Macie has to work extra hard to communicate her feelings and as her Mom I often feel frustrated, sad, angry, slighted and really pissed off. To be candid, it sucks big time. I don’t get the “Mommy, my tummy hurts.  Mommy, I’m hungry. Mommy, I need a hug”. I need to figure this out on my own. Yes, she has a device to communicate, but it’s not immediate communication. She has to turn on her “voice” and make it say what she needs while in distress. I am attaching a video that I just took of her daily struggle. We are working on social stuff and having a conversation. She just wants to lose herself in her iPad. You can see how difficult it is for her to communicate her wants and feelings. Breaks my heart, but we keep pushing. Her pup has helped her tremendously these last few months. He gets her, sometimes more than I do. 😔.
I apparently can’t post the video while blogging from my phone.  Stay tuned while I get my laptop powered up. 😡

Mom guilt

Mom guilt!  I feel it every friggin day. I see all the Facebook posts of Moms keeping their kids busy with activities, sports, crafts, play groups, etc. I read these posts and my heart hurts. I want to be “that Mom”, I want to keep my kids busy and entertained.
Our extent of entertaining this past Thanksgiving break included: going to grandma and Papas house which was awesome. Macie played outside with all her cousins for about 10 minutes.  Her pup ran around with her and kept her safe when she wandered. We went to a tree farm and cut down our own Xmas tree. Emma hung out with her cousins while we basically forced Macie to hang with us. She lasted about 1/2 hour and wanted a tree of her own. We then went to Grandma Casey’s house to put up decorations and decorate the tree. Emma enjoyed it and we had Macie put a few ornaments on the tree and take some pictures.  She does enjoy it, but for a limited time. I️ so appreciate everyone trying to make her experiences the same. It’s hard.
That was basically all Macie can handle for the next few weeks. We have to prepare her for Xmas eve and Xmas day..... that takes time.
Christmas break is pretty rough. It’s cold out, Macie doesn’t wear a coat unless playing in snow. I️ can’t just run out and do something fun with my girls. That’s where Mama guilt sets in, I want to do all the fun holiday stuff with my kids. Emma suffers (maybe a bad word), because we can’t do the mall, the zoo, the santa thing.
For real, 6-9 months out of the year I feel like the worst mom EVER. I would give my left boob.... ok both, to do all the fun activities that come with the seasons. It would take an army to prepare myself and Macie to take an excursion outside the house. Even  the grocery store.
Mom guilt is for real and it sucks!  End rant.
Sorry if there’s typos, i did this on the fly.

Getting sleep, FINALLY!!!!

I haven't had a good nights sleep in about 8 years!!!!  We finally decided to let Wrigley sleep in Macie's bed for the duration and OMG......she sleeps a solid 9 hours.  Rewind back to 5 months ago and this Momma got ZERO sleep!  Macie has always been a restless sleeper.  At one point, I spent many hours staring at a video monitor and made myself crazy.   I finally gave up and ditched the monitor......I had to......for my sanity.   Since Wrigley has snuggled up in Macie's bed.....pure bliss for all.  She sleeps soundly now for many hours, and I have peace of mind because I know she's sleeping better than she has in 8 years.  This pup has brought more peace and joy to Macie's life, and ours, than anything.  Win Win!
This post seems all about Me, but it's not....it's just the beginning of this amazing journey with an amazing girl and her best friend.....her first friend.

New!!!!

I have decided to start blogging again.  There are so many amazing updates with Macie and Wrigley that I feel facebook peeps are annoyed with my posts.....understandable.
This will be my outlet so read or don't.  I really want to document the relationship with Macie and her pup.

To the blonde woman who insulted my autistic daughter at Santa's village (by the big slide) on Sunday, June 12th. I hope you read this!

You called my 7 year old, non verbal, autistic daughter a "brat".  If my daughter was neurotypical like your perfect child, I would still be outraged that you called another child a "brat".  How dare you!  When your children become bullies don't you DARE look to blame anyone but yourself.  My daughter is SEVEN, and she is far from a "brat".
Yes, I confronted you because I care about how people treat her.  Do you have any idea what we go through?  Therapies, special schools, a device that gives her a voice, meltdowns because she has difficulty in noisy and crowded situations and can't voice her fears and frustrations.
I wouldn't normally dwell on this, but you tried to talk your way out of it when I politely explained my daughter to you.  You made excuses, you stuttered and then placed the blame on everyone BUT yourself.  My husband and I both heard you, and we were both VERY aware of what our daughter was doing.  She was at the top of a very tall slide and she slid past your son who was poised perfectly at the top waiting for you to snap a picture.
It's difficult for us to go to public places for many reasons.  You have no clue how hard we work to get her to "blend" in society and act appropriately so that she doesn't have to endure people like you.  She has every right to enjoy the same things other kids do.   We have spent the last 4 years trying to teach her to "wait" and "be patient".  She just happened to have a "moment" which I am sure your child NEVER has  (insert sarcasm)  where she was impatient,  pushed past him and went down the slide.  I'm sure you also noticed that me and my husband ran over right away and corrected her.  We were 100% aware of the situation and stepped in accordingly.   I'm pretty sure at this point that you could probably tell something was not right with my daughter based on her actions, but yet you still continued to yap about her pushing past your son.  Has your son never not waited his turn, got impatient, or just had a bad moment?  If not.....you are one lucky Mom and one of a kind.
My husband had some words with you, and you were very condescending and rude.  He's a better person than I am because he walked away.  That's something I wish I could do.  I don't have that in me and you pissed off Mama Bear.  My daughter doesn't have a voice so WE are her voice.  I will fight for my daughter until my last breath.....doesn't every parent?
I intended to "school" you on autism and I said to you, "My daughter is not a brat, she has autism and doesn't understand what she just did and I am sorry for that."  You got defensive, talked over me and then tried to blame others.  Not only that, but my cousin heard you STILL talking about my daughter several hours later while in line to get some food.
Moral of the story:  You have no idea what we go through on a daily basis, how hard it is for us to give our daughter the same experiences that you give your child(ren).  My daughter deserves the same things every other child does.  She may have acted "inappropriately" at that moment, but she is a very sweet and loving little girl who just happens to have autism.  I hope that maybe you might learn from this and be a bit more compassionate in the future.  You have no idea what others are going through.  Her disability might not be seen at first glance, but that's even more reason for you to stop, think, and put yourself in someone else's shoes..... just once, and stop being so quick to judge.
We are not perfect parents by any means, but we do everything in our power to protect our kids.

Back with a bang (ok.... Just tears and venting)

Wow, it's been a while. Near with me. I don't have a laptop right now so typing on my iPhone!  Fun stuff!
I haven't written in what, a year?  Year and a half?  Lets just say I am busy, busy, busy!  I'm also a liar. I don't have a job. One child is in school 4 days a week from 7:45-1:45 and the other goes two days for three hours!  I'm really just enjoying bliss while doing laundry, vacuuming, cleaning.... Taking an UNINTERRUPTED shower!
Anyway, I am back temporarily to say F$&@ YOU autism!
You have taken my little girl, and locked her in a world that NO ONE knows anything about!  Screw you!
I should mention that Macie is doing great and making huge strides in school and at home. She has amazing g teachers and family is awesome in supporting her.
I'm just angry that my sweet little girl can not verbalized her feelings. She's is funny, smart, caring, and beautiful inside and out. These traits radiate from her, but without words. I see her frustrations and I feel them every moment of every day!  She works so hard to try to communicate, and then frustration takes over and she shuts down.
My heart and soul are hurting for her. It's normal, I'm her Mommy!

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I know I haven't posted in almost a year, but someday i might have time to blog again!!!!

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!