Look at the bright side

It's interesting, yesterday I wrote about having no inspiration or the urge to write. That I wasn't at my best and things were going crazy and I, well, I wasn't me.

But then things started to take a turn.

I finally was able to work out visitations for my monkeys with their dad.

A dear friend surprised me out of the blue with the most simplest but most touching of surprises.

I got word from the University that I am looking to enroll in that the BCBA therapist I have been talking to can indeed do the supervisory hours for my practicum as long as she meets certain criteria by the University. This means I am one step closer to becoming a BCBA!

It's funny how life takes a turn.

You just put yourself out there and who knows what will happen!

Now I am planning everything that I want to do with my kids when they are with me and exposing them to island life.

Yes, I live on an island.

Yeah, that's my part of paradise.

They have never been here so I'm eager to see their expressions as we drive over the bridges and they see those waterscapes as far as the eye can see. Look, here's a pic...

At the same time this does bring me some anxiety.

Finding things to do with kids is going to be interesting because this is the first time I have brought kids here.

It's a tourists paradise with tourist prices so I bet you get my drift on that one.

But it is a beautiful place and they can enjoy the outdoors which they are not exposed to living in the 'burbs.

And with all that beauty, there is also danger.

Autism and wandering/elopement/whatever you want to call it and water - lots of WATER - do not mix well.

My place is on the water. There is a canal on the back of the house.

There is nothing guarding access to the water.

It's my dad's house - he has no kids living with him so he does not have to guard it or protect it.

But I have kids. With autism. Who LOVE the water.

My goal is to keep them as occupied as possible and as far away from the canal as possible.

I'm hoping the weather is good enough that I can take them to splash in the beach - the good thing about the beaches here is that they are not deep, they are shallow. The highest I have ever experienced the water to be at the beaches is as high as my waist - and that is at high tide.

Look at the bright side as someone always tells me to do - that's a bright side. And the fact that waves are very very minimal is also a good thing.

But you can imagine why I have the anxiety about water.

As I said before "Autism and wandering/elopement/whatever you want to call it and water - lots of WATER - do not mix well"

With the stories of the past month running across my mind and the most recent one of Freddie Williams (13) yesterday, I am on high alert. I will be counting heads every 5 seconds. I will be holding them at arms length as best as I can.

But I'm going to let them play.

I'm going to let them have fun.

I'm going to let them relax and be kids because that is what they deserve.

Autism takes over their lives every day and are rarely given the chance to just be.

I plan on taking lots of pictures so be prepared!! I'm so excited!!

To the Williams family, please know that you are in my thoughts and I mourn with you on the tragic loss of your little boy. I will enjoy my time with mine this weekend and give them extra hugs in hopes that the love I share with them transcends to Heaven for your little boy and he feels the hugs through my children. 

Just blah...

I haven't been in the mood to write lately so I apologize for that.

My mind has been a jumble of thoughts and random ideas but nothing concrete enough to write down.

My emotions have been going all haywire and that is just never a good sign.

I'm still keeping up with my working out and the challenge but aside from that I have lost my energy or drive.

I know this is temporary and it will pass.

How long it will take I have no idea but it will pass.

I'm trying to be proactive in getting myself out of the house to do things but its not easy when you're still a newbie in a small town and making friends is not easy.

But I am trying, and that is the important part, right?

Sorry to cut it short.

The weather here is sucking the energy out of me and the paint fumes in my office are not helping much either.

Make it a good one everybody!

Homesick

I'm writing this from my phone so if there are errors I'm sorry. I needed to write and its a pain in the ass to start up my lap top.

As you can see, the title of this post is Homesick.

I don't know if that is what I am but that's the word that comes closest to what I am feeling.

You see, I am home but I'm not.

They say home is where the heart is. Part of my heart is here and the other part is 3 hours away. The part that is far is laughing and playing. Smiling and singing. Being tucked into bed and kissed goodnight without me.

It has been this way for 3 years and it is still hard. It doesn't get easier.

Actually I think it gets harder.

While I build new relationships, I am missing out on the most important relationships of my life.

While I am falling in love, my heart aches for the first real loves of my life.

While I want to fight to make a change and a difference in my community, I am missing out on fighting for the betterment of their futures.

As I bet you know by now...the missing pieces of my life are my children.

They are the other half of my heart that I am longing for.

I miss wiping their noses and puke when they are sick. I miss washing their dirty dishes and dirty clothes. I miss dealing with sensory issues and emotional breakdowns. I miss fighting with doctors and therapists because I don't think the therapies are effective enough. I miss talking to others about autism and being part of that circle of common ground.

Who thought I would miss these things huh?

But you see, these are the things that are a part of motherhood, part of being THEIR mother.

I don't only miss the difficulties that challenged me every day, I also miss the simple things. Like the hugs in the morning and the kisses goodnight. The pictures on the refrigerator and the home notes from school. Their smiles and their laughter. Their jokes and their stories.

I miss it all.

I'm homesick.

I'm homesick for my children.

Video flashback of the amazing

I don't really take a lot of videos - I usually forget and then when I do its a pain in the ass to upload because of their size and all that jazz.

Recently I was organizing all of my pictures/videos and came across these two videos of Silly.

This one was taken last year. He was 8. We were at BK and Bruno Mars's song Just the Way the You Are was playing and he began to sing with it.

Still brings tears to my eyes because of how attentive he was to the lyrics and the song...it is so true..."Amazing, just the way you are"

This video is 2 years old but it is still the way that Silly acts. When he gets engrossed in a task. Here he was just starting to write words and get so excited about them. As you will see how obsessed he gets that he can't stop....(it's about 4 minutes long but I do hope you watch it)

This is just one of my sons...he is amazing. He is wonderful. He is perfect.

They all are.

I will try and take more videos and share the perfection that is my children.

Autism my ass - Amazing!...just the way you are.

Accountability: Week 4

Well, I've made it to the week 4 mark and I have to say I'm happy!

I have more energy now than I did before.

Lounging around is not an option for me. I hate it!!

I want to be out and doing something!!

Since I'm not a gym hog and I am doing this my way at my own pace I am feeling better with it.

I'm eating better and not getting as hungry as often as I used to.

Water has become my drink of choice.

Don't get me wrong, I do have my moments where I cheat like Tuesday when I was on a carb craving binge that I had 6 garlic knots and 2 slices of pizza with a soda.

But, I'm allowed.

1 cheat a week I'm allowed.

I'm not craving any sugars which is good.

The few times I have  had cravings I have dipped into the Skinny Cow chocolates or the Weight Watchers Ice Creams.

These have satisfied my cravings and taste really good too!!

To mark week 4 I have decided to do the following challenge

Yeah, I know I'm nuts!

But I'm not doing it alone.

A dear friend is doing the challenge with me so that's a good thing.

So to those of you who have been telling me I'm "inspiring you" - well, get up and do it!! Make your own schedule, make your own routine, do it at your pace!

You'll definitely be glad that you did!

When I hit the 8 week mark I'm going to try and upload new pics.

Hugs!! And here's to happier and healthier living!!

Disclaimer: I was not sponsored to talk about Skinny Cow or Weight Watchers - I promise!! I found these items at the grocery store and decided it would be a good idea to get some in preparation for a sugar craving and I'm glad I did!! 

Liebster Love!

I'm not going to deny it - I am an award hog!

I very rarely ever win anything and when I do I'm so gobsmacked by it that I shout it from the roof tops and put it on billboards and banners because - hello!! I'm not that good or that lucky!! Yes, I'm a self-deprecating bitch sometimes...so what?

Well, Kristen over at 31 Million Seconds has apparently found something positive in me and has nominated me for the Liebster Award!!

This is how it works:

"Liebster" means dearest in German, and it's awarded, blogger to blogger, to up-and-coming blogs with less than 200 followers.  The rules for accepting and giving the award are pretty simple.  Once you accept the award, you just have to do the following in a blog entry:

• Answer the 11 questions posted by the nominator on her blog
• Give 11 facts about yourself
• Nominate 5-11 other new, up-and-coming blogs with less than 200 followers
• Make up 11 more questions to pass on to the bloggers you choose to nominate
• Thank your nominator by linking back to her blog
• Upon your post going live, contact your nominees about your nomination for them

 So, here are Kristen's 11 questions for moi:

1. If you could only have one food for every single meal for the rest of your life, what would it be?
   PASTA!!! Especially Mr. Big's Fettuccine Alfredo. He makes it from scratch and is all kinds of yummy!! I do have to admit I'd have a lot more working out to do to keep the weight off but oh so worth it!!
2. Baths or showers?
   Hmmm...Showers, they are quick and easy - I gave up baths when I had children. They are the one's that take baths now and make a mess for me to clean up.
3. What's the last movie you saw?
   Silverlinings Playbook!! Oh my God! I LOVE that movie!!
4. Who do you admire and why?
   I admire my children. They live with autism in their lives every day and are always smiling and just happy. I love them more than words.
5. What do you normally have for breakfast?
   Cereal - I know, boring. I do try andmix it up every once in a while with eggs or waffles and stuff but usually its Cereal. Special K with Almond Milk to be exact.
6. What's your favorite scent?
   I have this one body spray from Bath & Bodyworks: Sea Island Cotton - that is my summer/spring scent and for fall/winter I use their Chinese Cherry Blossom
7. When was the last time you cried?
   Last night. I cry a lot. I'm not ashamed of it. I miss my children every day and I worry and I panic and I create scenarios in my head that drive me crazy. I know they are safe in bed at their daddy's house and are protected but I'm a mom. I worry.
8. Are you going anywhere for a summer vacation?
   No, I live in an island paradise - why would I go anywhere?!?! 
9. Cats or dogs?
   Neither - I have kids remember?
10. What's your favorite kind of fruit?
    Raspberries
11. What's the one song that you can't help but sing along to?
    Wow!! I have no idea actually...I have such an eclectic taste in music that I pretty much sing along to everything that I can sing along to. On any given day I can be belting it out to Metallica or AC/DC and on another day it would be Brad Paisley or Florence and the Machines. I know, I'm weird.

Here are my 11 Random Facts:

1. I have no idea what my natural hair color is
2. I am dying to cut my hair shoulder length but Mr. Big will shoot me if I take more than 2" off my hair
3. I am a closet purse whore - you'd never know it since I only carry a little money pouch with me but I LOVE purses!!!
4. For Spanish being my first language, I think my Spanish speaking skills suck. I stumble over my words  more than I'd like to
5. I'm 5' tall with a size 8.5 shoe - yeah, I'm weird
6. I'm still afraid of the dark
7. I'm also afraid of being alone
8. I want my mini-van back - shhh...don't tell Mr. Big, he will tell me "I told you so"
9. I am not as much of a neat freak as I claim to be; it helps make sure that Mr. Big keeps the house clean though
10. I bite my nails
11. For being a "social butterfly" I have a have a hard time approaching people in public situations

Now here are my Nominees:

Caitlin @ Mrs. Mid Atlantic

Kimberly @ All Work and No Play Makes Mommy Go Something Something

Diane @ OneLocoMommy

Carrie @ Huppie Mama

Lisa @ Between Hope and a Hard Place

And here are the Questions for these wonderful writers:

1. As a child, what did you want to be when you grew up?

2. Did you like going to school or hated it?

3. What 3 objects would you take with you if you had to leave your home and never return?

4. Who do you admire? (This a good one so I'm stealing it)

5. City or Country?

6. What is your favorite sport?

7. What is the one TV show that you identify with?

8. Wine, beer, liquor?

9. Large family gatherings or intimate occasions?

10. What is the one song that you must have on your play list?

11. Favorite color?

Kristen, thank you for seeing a glimmer of hope in me and my writing! I hope not to disappoint you in the future!!! 

Oh and of course - go check Kristen out! She's all sorts of adorable and she has a cat! 

Still numb

Yesterday's post was hard to write.

Then reading all of the other posts by other autism bloggers and families was even harder. But I had to do it.

I had to because it was my life. It is my life.

While my children do not live with me. I still live it every day.

When they are away from me my heart aches for them and panics in fear for that which I cannot control.

Wandering from school.

Bullies.

Walking away from an aide that just stepped down to tie her shoes.

Anything. Everything.

I fear getting a call from their father or step-mommy that they did not get off the bus.

I still remember one call when their daddy was waiting for our Buddy & Baby Girl to get home off the bus and they did not show up.

They were kept at school because Baby Girl had an accident and they had to return her to clean her up.

There was no phone call to tell anyone what had happened.

They said that they called.

Nobody called.

It was determined after we called the school.

Needless to say I had it out with the school. Their daddy had it out with the school. Their step-mommy had it out with the school.

Luckily it was just the summer school.

Talk about panic.

I know that when they are with me and I am around friends and loved ones they laugh at me.

Laugh? you may ask

Yes. Laugh. But in a good way.

Because you always hear me "1, 2, 3, 4, 5...oh wait...6 - got 'em!"

I am always counting heads.

I am always on high alert and looking for them and making sure they are within my line of sight and earshot.

People tell me to stop and take a minute to eat. To sit. To breathe.

I just can't.

I'm on high alert.

I have 6 of them! I have to be ready to run at all times.

Being a parent does not stop when they go to sleep. It does not stop when they walk out of your door to their other parents home.

After reading the stories of Mikaela, Owen, Drew and now all the victims in Oklahoma it all hits close to home. Makes me just want to get in my car, drive 3 hours, and just hold my children and never let them go.

I want to just hold them tight. Tell them how much I love them. Tell them how much they mean to me.

I cannot fathom how these families are feeling. How they are grieving. Knowing that they will never be able to kiss their loved ones good morning and good night. Knowing that they will never feel the hugs so tight from the arms of their little ones.

I die inside every time that I drop the children off with their father.

I just can't imagine how I would be if I was never able to see them again.

To all the families who are suffering right now through the loss of a loved one and through tragedy....my heart aches and cries for you.

You are in my thoughts.

Love your family every day. Tell them you love them. Hold them tight. Always let them know how much they mean to you. You never know what tomorrow holds.

Pour on the Love: You're in Our Hearts #Mikaela Lynch #Owen Black #Drew Howell

I have a heavy heart trying to write this post. You don't understand how many times I have written and deleted the first few lines.

How I've deleted the first few paragraphs.

There is no way to put into words what I am feeling right now but I'm going to try.

Last week I posted about Mikaela Lynch. If you link back now you will see that I have taken down her photos that went along with the missing alerts. I did this out of respect and love for her family.

Such a tragedy. Their little girl's face should not be plastered all over the media anymore.

Her face should be in their home and in their hearts.

Her face belongs to those who love her.

Her story serves as a reminder of how fragile life is and how anything can happen in a split second.

This post is about love. This post is about understanding. This post is about acceptance. This post is about LOVE.

The unconditional love that a parent has for their child regardless of his/her abilities.

The special love that parents of a child with autism have for that unique and special gift they were blessed with.

Understanding that our lives are difficult every day but we truck through them with smiles and hope and LOVE because they are our children and we will do everything in our power to make their lives a better place.

Acceptance in knowing that we are not alone. Acceptance that we are a community of family, friends, teachers, that have one common goal - just living.

We are not here to judge that which we do not know. Nobody can.

Nobody can judge what happened to the Lynch family. Nobody can judge their reactions. Nobody can judge on how they grieve. Nobody can judge anybody. Not me. Not you. Not him. Not her. Nobody.

UPDATE: I am writing this additional part on Sunday because I actually wrote this post on Friday afternoon. Another child with autism went missing this week. Owen Black, 8 years old from Florida. After an exhaustive effort to search for him, his little body was found on Sunday in the waters off of Perdido Key. 

Another child, age 2, Drew Howell was also lost in the same manner this weekend. I am updating this on Monday. I did not even hear about him until I read other posts this morning. 

There are no words to express these tragedies.

It is hard living a life on high alert. Listening to every sound that is made to make sure that your child is still in the house and has not slipped out. Having the reflexes of a jungle cat to move and run when things don't go right. Functioning in a world with locks, alarms, alerts, and chaos.

We sleep with one eye open and an ear to every wall and sound in our homes.

But we are human. We breathe. We bleed. We laugh. We cry. We cry sometimes more than most.

We love our children just as much as you love yours.

Our lives revolve around them.

This could have easily been any of my children.

I know the panics and the fears. I have experienced them. One second of panic can turn into the worst nightmare ever.

Monkey slipped away once. While I was loading his baby sister in the car. It was a second. An instant.

He was 5.

I heard a car horn blaring behind me.

I turned around. He was standing right in front of the vehicle.

Not responding to his name.

Just still. Silent.

No fear. No crying.

My heart stopped.

I drowned out the driver who was yelling at me as I gathered my son into my arms.

I just walked away and said "He has autism"

I yelled at my oldest because she was the one who was helping him into the car.

It was not her fault.

I made sure to let her know.

We cried together as we held her baby brother.

It was not anyone's fault.

It was one second.

That's all it takes.

It is time to listen now. And take in what is going on. It is time to make this world understand that our children are children - regardless of their age or physical appearance. We need to get our communities to stand up and band together to learn about the risks, the dangers and most of all how to work together as one.

First responders need more training. Teachers need more education. Alert systems need to be refined. Reporting timeframes to be improved. Resources need to be gathered and revised and reviewed and revised again. Education. Training. Knowledge. Acceptance. Understanding. We need more of this all.

We need to be a true community. Side by side. Hand in hand. 

We all live in this world together.

For now I close this post because my heart is heavy and all I want to do is take my children in my arms and hold them and never let them go.

To the Lynch, Black, & Howell families and the countless other families like them, you are in my heart. You are in my thoughts. You are in my world. I love you and will never stop educating and fighting because we share one common bond - the love of our children with autism that will never end.

In loving memory of Mikaela Lynch, Owen Black, Drew Howell and the countless angels with autism that were taken too soon. Run and play now with no limits. You are loved now and always.

Accountability: Week 3

Yeah, I know, I'm late on this one but who cares. It has been another roller coaster of a week and it doesn't stop!

I have to admit. I'm seeing RESULTS!!!

I'm not as toned as I thought I would be by now except on my legs but I do see results.

I'm losing weight!!

My clothes are starting to fit better.

My energy is higher.

I'm eating better.

I'm loving the way that I'm feeling.

There have been hard days, I'm not going to lie.

Like the day where I was just so hungry that I bought fried chicken and mac n cheese from Winn Dixie because the craving was so intense.

But I am allowed to have a craving and give in to it every once in a while.

As long as it is not every day.

This is not an easy journey but one that I am determined to make.

Even if I pass the 12 weeks - I don't care how long it takes.

Its my journey and my fight for a better me and for my children.

I'm still battling with the anxiety and mood changes.

There are days where I'm go-go-go, happy-happy-happy.

And there are days where I just curl up into a ball and watch TV and cry.

Those are fewer than usual but still there.

Those are the days that are harder to get up and move but I have to force myself.

After I do I'm feeling better.

I'm doing better.

That's all I can say.

That's all I can hope for right now.

One day at a time!

A Piece for an iPad

Hey there everyone! I know this is a blog and not a push-push-push to get my ideas across to try to force and bend people to my will. I'm just not that kind of girl.

But I'm not opposed to begging.

You see, I'm not begging for me, I'm begging for my kids.

I have just signed up for an iPad Challenge through the Puzzling Piece. (warning if you're at work, lower your volume if you click on the link - there's music!)

What is the Puzzling Piece?
- In  a quick summary, the Puzzling Piece is an accessories line developed by a mother of a little boy with autism. These pieces are to spread not only autism awareness but also to help raise money for autism families and causes that support autism. Read more here.

How does that involve an iPad challenge?
- Well easy, I entered the names of all my children for a chance to win an iPad. The challenge part of it is that I need to sell 60 pieces in order to receive an iPad.

But you have 6 kids!
- Yes, that is true, so my goal is 60 x 6 = 360 pieces

How can I help?
- I'm glad you asked. Just go the Puzzling Piece website www.thepuzzlingpiece.com. Then go to "Products". Click on the tab that says "iPad Challenge Pieces". Find a piece or pieces that you like and order. When prompted for the "Challengers Name" you enter my name - Krystal Pares. (Yes, I'm putting my full name out there because that is how important this is to me).

Here is a link to the iPad Challenge Pieces to make it easier (I'm all about simplicity people)

Here are some of the pieces that qualify for the challenge:

iPad Challenge Pieces

An iPad would be so beneficial to my children. It can help them with communication. It can help them with attention. It can be used in therapy. It can be used as a reward. There are so many things an iPad can be used for. There are so many apps to help children with autism. I need to give them a chance. I need to try. I cannot afford 1 iPad let alone 6 so this is my attempt. This is my effort.

Will you help?

I would be more than thankful!! My children will be more than thankful!! Heck, I'll even come over and do your laundry, wash your dishes, and cook you a meal!! (Well, maybe order a pizza because that's about all I'm good for in the kitchen)

If you can't purchase, I understand but can you share? Let others know about my goal?

Can you help me let my children have the smiles these children have?....

Disclaimer: Although I love you all very dearly and would love to come and do your housework, we all know that's really not possible but its the thought that counts right?

A worst nightmare come true

UPDATE: It is with a sad heart that I announce that the body of little Mikaela was found Wednesday morning in a creek near her family's vacation home. Please keep her family in your thoughts and prayers. This is a loss that no parent should ever have to experience....Rest little angel, you will be missed but always loved.

I know all parents have fears of their child being kidnapped or running away.

There is no worse fear imaginable.

Add to that fear a child who wanders. Who is oblivious to the environment around him/her. Who does not respond to his/her name when called. Who does not speak. Who is younger in mind than the body they inhabit.

I have this fear every day. I have two wanderers - Silly and Monkey.

I have had those moments of heart stopping and sweat inducing panic - for a few seconds - but even in those seconds my world comes undone.

For a family in California, this panic and fear has been multiplied a thousand fold. Their 9-year old little girl has been missing since Sunday. She is not your average 9-year old. She has autism. She functions at the capacity of a 1 year old. She is non-verbal. She's gone. Mikaela Lynch is her name, one she will not respond to.

Many people are judging the parents.

She was outside playing in a FENCED IN YARD with her brother. He was frightened by a bee and ran inside. Unfortunately he left the gate open. Mikaela slipped out and began to wander.

What people without children with autism do not understand is how quick these children are.

It takes one second to glance down at your screaming child who is panicking from a bee and then look up and she's gone.

You search frantically in every corner of the yard while your spouse jumps in the car but you don't know what direction to go in.

Children with autism are drawn by water. They do not know the dangers of water.

There was water on all sides of the property the family was renting for Mother's Day weekend - yes Mother's Day Sunday is the day this family's world collapsed.

The family has decided to remain private and only speak through police at this time. Its understandable. They are dying inside every day until their little girl is returned to them. At the same time there are those in the public who are judging them for leaving their child to play outside unattended.

Who are we to say that she was unattended? I have let my children play in the back yard while watching them through the windows of the house as I did dishes, picked up toys in the living room. What parent hasn't? Just because she is prone to wander does not mean a parent cannot feel safe to let her child play in the backyard. She was safe.

She was in a FENCED IN YARD with a CLOSED gate - who would have known a lone bee would have flown into the yard causing her brother to panic and run? Nobody. Not the mother. Not the father. Not the public who is so quick to judge.

It is now Wednesday. She is still missing.

They are searching for her in every yard, house, field, and even more scary - waterway in the area.

Search and rescue teams are combing everywhere possible for this innocent child.

There was an update that pointed search and rescue workers in a new direction after a home surveillance camera showed the girl walking by it.

There is hope. There is always hope.

But right now is not a time to judge. It is a time for prayer, positive thinking, whatever you do when times get tough....and hope that Mikaela is found alive. safe. and returned to those who love her.

I love being a mom

There is nothing better than being a mom.

I honestly can't think of a better thing.

Yes, there are times where you want to go screaming for the hills and pull your hair out but then you turn around and see the face of your child. The perfect creation that you made and remember "You're worth it all and more!"

That is how I felt this Mother's Day weekend.

You see, I didn't have just Mother's Day with my monkeys, I had a whole weekend with them.

On Saturday it was a water day.

I surprised the kids in the morning and told them we were going to a pool party.

They were excited!

Buddy not so much. He wanted to be glued to the computer as always but I made a promise that after the pool party he could go on the computer. He fought me for a bit but then he calmed down and agreed.

Good start so far.

We went to a friend's house for the day (after a mishap in the car with french toast sticks and syrup and a very sticky Baby Girl) because they have a community pool and it was just all kinds of awesome!

Her little boy and Bug hit it off in an instant! They were dino-brothers-from-another-mother. They were inseparable.

Monkey went into the water. He used to only sit on the steps. He was IN the water. See....

Baby Girl was a fish! I just put her floaty suit on and she just went off!! I was so happy to see her take to water like that. Before I would have to carry her around in my arms the whole time which is difficult when you are watching your other 5 children in and around the same pool.

She soon tired of the floaty suit because it was giving her a wedgie - poor baby but we compromised for water wings and she was off again! Too cute!!

Silly was just having a blast. All you could hear was his laughter and his smile was just beaming.

Princess was swimming and playing and smiling and laughing. We had a "mommy I'm not talking to you moment" when we had to leave to get some lunch but her smile and hugs were returned when we headed back to the pool and she engaged in a water balloon fight with other kids.

After the pool we went to a friend's house to relax until it was time to go home.

On Sunday I spent the morning looking for Princess's ice cream for her science project because of course, she waited until the last minute to finish it. After about 4 stores later, I found it and headed over to pick up my babies.

I was surprised with gifts of cake (decorated by Buddy), a handmade necklace (crafted by Princess to include "under the sea" beads because she knows I love the ocean), a flower with Baby Girl's face on it, and a homemade brownie recipe written by Bug.

After I made them breakfast we watched a movie and then headed out to Chuck E Cheese.

They had a blast! They won over 1300 tickets!! Enough to get a prize for everyone.

Yes, I dressed them in bright colors and the boys in the same outfits - they are easier to spot this way in a crowded place like Chuck E Cheese.

Then we returned to our friend's house to relax and unwind while I helped Princess finish her science project.

Aside from having to retype everything for her presentation folder because she was having an anxiety attack that she was not going to finish on time....the day ended wonderfully.

As I ushered them to the door of their dad's house getting my last hugs and kisses for the day, their step-sister came out and surprised me with a small bouquet of baby roses and said "Happy Mother's Day!" I was speechless.

It was a perfect weekend. A perfect celebration of being a mom.

I love being a mom!

 In order of appearance:

Top Left: Mommy n Buddy

Top Right: Mommy n Monkey

Middle Left: Mommy n Silly

Middle Right: Mommy n Baby Girl

Bottom Left: Mommy n Princess

Bottom Right: Mommy n Bug

Time flies

There is no doubt that we as parents would love to stop time.

We would love to slow down the growing up of our children and enjoy them for a little bit longer. Just one more day, one more hour, just a little bit more.

Yesterday I was talking with Princess and I said to her "You're such a good little girl!" Her reply was "I'm not a little girl any more." She's right. She's 11.

I was amazed at how I still call her a little girl. To me she is my little girl. She's my first baby.

She was the miracle that almost never came to be.

You see, my pregnancy with her was a very difficult one.

Around 16 weeks into my pregnancy I was not feeling well. I was feeling a lot of pressure and it just didn't seem right.

I went to the doctor and she told me that I needed to go in for surgery first thing the next morning. She determined that I have an incompetent cervix and I needed a cervical cerclage or else I would lose my little girl.

I had already had a miscarriage before, I did not want to go through that again.

After the cerclage it was much cramping and uncomfortable pain. I had heart burn and felt sick a lot. Then came the contractions landing me in the hospital many times. This little girl was not enjoying the comfy warm quarters she had in my uterus it seemed. She just wanted out!

She was born on the exact day that I hit 36 weeks and 6 days. She couldn't wait to hit the 37 week mark.

She was 5lbs 7oz and 19 inches of tiny little girl.

Two weeks after her birth there as something wrong. My mommy alerts were ringing non-stop. She wouldn't eat. She wouldn't sleep. We rushed to her pediatricia and after her exam he made the following comment:

"Princess's heart beat is going so fast I can't count it. I'm admitting her to the hospital. I'm calling ahead you need to go now. If we wait longer, she can go into heart failure."

I'm a new mom. An 18 year old mom. This is not what I want to hear.

I still remember her dad rushing us through the door as I carry my little girl in my arms crying, the both of us. He was being strong. I was a basket case. I couldn't even bare putting her in her car seat. I didn't want to let her go.

She was diagnosed with A-V Nodal Reentry Supra-Ventricular Tachycardia.

She spent 2 days in the PICU. I was able to bring her home on Thanksgiving Day.

She was on a strict regimen of medication to make sure her heart rhythm was regulated.

Like many babies, she developed reflux.

More medication.

More emergencies.

We didn't know what was happening at the time. Her body was stiff, she was crying non-stop.

I rushed home from work and her father was beside himself. I did the usual mommy thing. I knew baths relaxed her. I ran the water and did not hesitate, I got in the tub with her. Scrubs and all. It wasn't working. Dad was on the phone with the doctor who said get her to the hospital now.

We had to take her to her hospital with her cardiologist.

It was 45 minutes away.

An ambulance wouldn't take us.

We had to get on the highway.

It was raining.

Her body would not soften enough to get her in the car seat.

Traffic hit.

We called 911 from the highway. We were close enough to the hospital that we knew the ambulance would take us there.

The Road Ranger behind us saw us with the hazards on and cleared the lane so the ambulance would have space to come.

The rig arrived.

They started an IV on her as we raced to the hospital.

We went in and as they were transferring her to the bed to work on her, she had a seizure.

I was crushed. Her dad was crushed.

He was outside calling his mom.

The paramedic saw me as I almost collapsed.

My baby was in pain.

At almost 4 months of age, she had a dystonic reaction to the medication. (Yes, most dystonic reactions are the cause of antipsychotics but other medications can cause it as well in this case it was Reglan - she's the one in a million).

The treatment was high doses of Benadryl. She was asleep in my arms. For hours. We had to make sure she was breathing.

I was terrified. Her dad was in a panic. I had never seen him cry before like that. He was stoic with her heart condition. This was more than he could handle. More than I could handle.

We could have lost her. Again.

She is a strong and healthy little girl now. She is no longer on any heart medication.

You would never have known this was her life in her earliest days.

Time flies.

But she will always be my little girl. My baby. My miracle.

Thanks to Miami Children's Hospital for being the saving grace both times my daughter needed you. I cannot express in words how grateful I am for doing everything to keep my little girl in my life. I am eternally in your debt.

Accountability: Week 1

It's hard!

Trying to lose weight and stay healthy.

Wow!

It doesn't help when depression and anxiety and stress kick in.

I know that exercise is supposed to help with that but getting the inspiration to do it to help out is the hard part.

This past week was a hard one.

I did exercise but not near as much as I have been doing.

I did stick to the diet plan though.

I ate better.

I went running.

Did some strength training exercises.

I went running some more.

I ate lean meats and reduced my carb and calorie intake significantly.

The good thing was that I wasn't feeling hungry. I was satisfied.

I did get some energy back in my step.

It wasn't a perfect week but it wasn't a bad one either.

I am proud to say I was able to put on my jeans without wiggling and shifting to get into them!

So far so good.

No measurements this week. I'm trying to steer clear of the scale for atleast the first 3 weeks so as not to discourage myself.

But I do know its working.

Mr. Big complimented me today - he said my ass is looking better.

Score!

Overwhelmed with Happiness

I know today is accountability Monday but I have to wait on that to tell you about this weekend...

It was amazing!

It was humbling!

It was...so much that I cannot even put it into words.

The weather was perfect. The water was perfect. The beach was beautiful and the perfect place for the event.

As the morning started the well oiled machine that is Surfers for Autism set up the tents and boards

There was even some time for dancing

Then the families started coming in and we began to get ready 

Once we all learned the rules, talked about safety and discussed what we were going to do for the day, it was out to the water!

The weekend was just pure magic!

Due to the flat waters of the Florida Keys, we had the kids on paddle boards and paddled them around or just glided them on the water.

They enjoyed the few waves that came by because they propelled them forward. We had a "conveyor belt" of sorts that passed the children on the boards from one volunteer to the other. Those who paddled before were in the middle. Some strayed. 

As the day continued some waves came in with the wind and there was some surfing.

It was controlled chaos. 

It was perfect!

The smiles were endless. The laughter was filling the air. We saw miracles happen before our eyes. We were even a part of them for a while!

Barriers were broken down and for one day children and families could forget about the word autism and just have fun.

I was brought to tears of happiness, had lots of hugs and kisses from the most amazing children and made friends with the strongest families around.

I can't wait to bring my kids to one of the events...they will love it as much as I did.

Thank you Surfers for Autism...for everything that you do and more!! You have taken my heart with you!!

Are You Ready for a Good Time?

I was going to post this tomorrow but I'm so excited that I'm posting it now!!!

No, I'm ready for a GREAT time!!

Why?

You see, this weekend is THE 2ND ANNUAL FLORIDA KEYS SOUTHERNMOST SURFERS FOR AUTISM BEACH FESTIVAL!!!!

This is the first time that I am participating in a Surfers for Autism event and I cannot wait.

Instead of participating as the parent of a participant, I am going to volunteer. Hopefully next time I can do it with my kids!

What can you expect from a Surfers for Autism event?

"At a SFA event, our surfers are provided a safe environment where two to four highly skilled and trained surf instructors carefully guide them into waves. Our surfers and their families are treated like rock stars and enjoy a day filled with a range of activities including stand up paddle boarding, kayaking, live music, face-painting, games, bounce houses, fire engine tours and much more. A catered lunch is also provided, all at no cost. This is a very special day where children with ASD interact with typical peers and wow families with their capabilities. These events are examples of inclusion at the highest level." - Source: surfersforautism.org

This is amazing!!!

The smiles are going to be brighter than the stars in the sky.

The laughter is going to ring louder than the sounds at the Sydney Opera House.

The love is going to grow.

Friendships are going to be made.

And most of all, miracles are going to appear before our eyes.

Check these videos out, make sure you have some tissues first.




 If you are ever considering a charity to support, this is the one!!

Find them online at
http://surfersforautism.org/

Find them on Facebook at
https://www.facebook.com/surfersforautism

I promise to share my fun with you next week!

Dancing with reckless abandonment

What is this crazy woman talking about now? She's up, she's down, now she's dancing?!?

Well, on Facebook I saw a link to BigVision Business and this this is what came up.

How many times have we done that as kids/teenagers?

I remember singing into my brush and jamming out to Debbie Gibson in my younger days and Greenday in Middle School and Ricky Martin in High School. I threw some Mambo No. 5 into the mix every once in a while too.

I remember seeing Princess jamming out like this on the bed while playing Guitar Hero to Tom Petty's Running Down a Dream.

Sometimes we need these little bits of energy and action in our lives to shake away the negatives and just remember that we are alive and need to lighten up.

Imagine doing this with all your kids?

Now that would be fun!! How about getting your kids to do it to?!?

Hmmm...sounds like a challenge....

We'll see.

What was your dancing with reckless abandonment song when you were younger? Do you still do it?

Positive Note: Yesterday I received an email from Bug's teacher which said 

"Good morning! Just an update: Bug is doing GREAT!!! He won 2nd place in our class

for Elocution yesterday.  He received a ribbon and we are very proud of him.

Also, interims are going home tomorrow and he has all A's and B's." 

This is one proud mommy right here!!!! This is a FULL MAINSTREAM class!!! His last report card he made honor roll but that was a mix with his ESE and Mainstream class...this quarter is all based on his mainstream class and he looks like he is headed in the same direction. I'm so proud!!!  See look I'm dancing with reckless abandonment over here!!

Resources Put To No Use

I know not everyone who reads this will understand but I'm putting it out there in case you do.

There is a wealth of resources out there! Its amazing how much information one can learn about autism and how our children think, see the world. It's just overwhelming sometimes.

I continuously read and research and find new ways that turn on the light-bulb in my head and go "That sounds like him!" or "That is so her!" or the most common "Wow! I never thought of it that way."

I wish I could take all this information that I find and use it.

The problem is that I can't.

I see my children for such small amounts of time that I am rushing around just trying to feed them, spend enough time with each of them, cleaning up after them, cleaning them, changing their clothes that by the time I look at the clock, its time to take them back to their dad and its a struggle to get them in to the car because the little ones don't want to go and the older ones are indifferent.

I hate this feeling.

I am a mom.

Their mom.

I have so many ways to help them but I can't.

I am not let into their lives except to have visitation with them.

Every time I ask a question or state an opinion, it is not considered because that is not part of the plan.

I hate that plan.

I hate everything about it.

It makes me feel like an outsider.

I feel like there is so much that my children are capable of and they have the world at their finger tips but I can't give them the access to it.

I'm a fighter. An advocate for their futures.

But I feel like a failure.

I can't make the changes that I need to because it will cost me about the same as a divorce.

I don't have that kind of money. I didn't even have it during the divorce.

That has been taken advantage of.

I'm kept in the dark.

My children are kept in the dark.

There is so much that they need and I know it but my hands are tied.

I can help them. I know I can. But I just can't.

Until the time comes, I will continue to research. Continue to learn.

Continue to fight.

Hopefully it won't be too late.