Bittersweet Beginnings

I’ve been meaning to start a blog for so long, but as with many things in my life, it kept being put off. I kept saying to myself, “What would I write about?” “Why should I write a blog?” Then, “what would I call my blog?” Then today happened.

A lunchtime today, I called my hubby to chat to him on his lunch break. Halfway through our conversation, C (hubby) reminded me that today was the Feast of St. Francis. And it made me cry.

Back track 8 years plus one day ago, my husband and I were expecting our first baby. I was only 7 weeks pregnant, but already so in love with this little life inside of me. My dream had come true, I was finally going to be a mommy. That day I went to work like normal and was feeling okay, nothing out of the ordinary. At lunchtime, I went to the restroom and realized something was wrong, I was spotting. I immediately called my clinic, then my husband. The following few hours were a blur, leading to the devastating news that our baby had passed. I ran out of the clinic, and we both sat in our car crying.

The next day, October 4th, was difficult. We lost the baby that day, and were in the midst of the most trying time in our life together. That was the Feast of St. Francis. So, we named our baby Francis Miguel.

The following weeks were hard, there were so many unanswered questions as to why we lost our baby. It was hard to see how, if any, blessings could be born out of this trial.

At one point, I prayed to God, “Please Lord, I want to be a mother. I will take any child you bless me with, even if they have special needs.” The next September, I gave birth to our first son, and he has Autism. He was our answered prayer.

So, he is one of the main reasons I started this blog, so I can be reminded that sometimes blessings come in the most unexpected ways. And, for my son, sometimes all it takes is stix and fuzzies.

 

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Special Kids Need Special Aunts

Today is my oldest sister’s birthday. And, has been on my mind all day. Thinking back on find memories of laughing until milk comes out of my nose (yes, that did happen) blanket forts and cartoons Saturday mornings are some of my favorites.

But, there’s one thing I want to mention about her, is her love for my special boys and our other sisters special boys.

Let me explain, my other sister also has special needs kiddos, 3 boys. And she does an amazing job trying to raise them on her own.

For myself, we have 2 special needs kiddos who have their own challenges as well.

Our sister, who’s birthday is today, does not have special needs kids, but that hasn’t stopped her from doing her best loving them.

It hasn’t stopped her from helping out when there’s a gap in our day when we need care, or to be a helping hand when taking kids out in public.

My one nephew, H, has significant challenges, but she loves him regardless. Seeing those two makes me happy.

When she comes to our kids birthday parties and sits with Stix or Trux asking them how they are, my heart melts.

Sometimes it’s hard to put into words how much it means for certain people to give that extra hug, smile or hand with your kids.

Its even harder when they have special needs.

So, to my big sister on your birthday, thank you for loving our kids. Thank you for seeing their potential. Thank you for reaching them in ways no one else can.

Happy Birthday.

Love You Sis!

 

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A is for Autism Awareness

Today is Autism Awareness Day, a day that brings many mixed feelings. Is this a day I “celebrate?” Is this a day I shrug off with the reality that Autism Awareness is my life 24/6, and the life of some of my closest friends and family?

Instead, Autism Awareness Day helps me be more grateful for all the love and support my boys receive from our friends, families and therapists.

So, I want to thank you.

Thank you to my friends in CCR who have listened when I express a struggle with one of my boys. For helping us take care of them at gatherings.

Thank you to my family who love our boys for who they are and love them where they are at.

Thank you to the teachers, especially the ones who text at 7:30 at night because they have a great idea to help your 6yo cope at school.

Thank you to the pediatrician who has helped us figure out medications, treatments and therapies for our boy with combined ADHD.

But most of all, thank you to God almighty who blessed me with my husband who is on this journey with me. It’s not an easy one, but I wouldn’t want to do it with anyone else.

Here’s to all the families living with ASD, hats off to you! You inspire me and are amazing!

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Climbing Walls, Breaking Barriers

Last night we took the kids to an indoor playground. And, as usual, the kids had a blast.

But there was this one moment, one blip in time that I will never forget.

I saw Stix climbing a rock wall.

No big deal for a typical 7 year old, but Stix isn’t typical.

He didn’t walk until he was 19 months old.

He didn’t start speaking 2-3 word sentences until he was almost 4.

He couldn’t jump until he was about 4-5 years old.

So, there I was, watching Stix climbing the rock wall.

But he wasn’t just climbing a rock wall.

He was breaking a barrier.

The “barrier” of Autism that tells us it will limit his potential.

The “barrier” of Autism that tells us socializing will always be a challenge.

When I saw him climbing that Rick wall, I was so proud of him.

He had broken the “barrier” of Autism saying he couldn’t do that.

Instead, he formed his own way, climbed his own way and all along beloved he could do it.

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When Daddy is Gone

Daddy has been out of town since late Thursday afternoon, which means I have been alone with all 5 kiddos. It also means I am completely in charge of our daily routine.

In my life, I have never been a vey organized person, nor have I ever been one with a very rigid routine. But, that all changed when I became a mom to two special needs boys.

For the most part, they are high functioning enough where a change in routine can be managed. Not always easily, but it can be done if need be.

So, these last few days of being alone have been a challenge.

Everything is up to me.

Yesterday was the first full day of not having Daddy here. He is usually at work during the day when Stix and Trux are at school, so the day went by as usual.

As they walked in the door, she came from upstairs and brought with her the boys’ favorite things from their room. In that moment, I felt so blessed. Here I had been stressed at not having Daddy here and the burden of the routine left up to me.

Then, my parents came over for dinner. The boys did fantastic. They loved showing off their things to grandma and grandpa.

After all was said and done, and Grandpa and Grandma left, I realized I had learned a very important lesson, and one I had missing for a long time.

The team is takes to care for our boys isn’t just me and Daddy, its the whole family.

The team includes the typical little sister.

And Grandparents.

And friends.

So, as I type this out, I have in mind the many people who have helped with our boys.

The ladies who have babysat them. The people who helped us find them when one wandered off. The family members who have helped out with caring for them when we ere in a pinch.

I will never forget that when I say it takes teamwork to raise special needs boys, I know it doesn’t mean just the 2 of us, but many more than that.

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The “Benefit” of Being Sick

Stix and Trux were both sick this week. Which meant, both were home from school and both were out of routine. This usually spells disaster for me, as I work from home and have to keep a close eye on them. But since they were both sick, it was much easier for me.

Specifically, it was easier with Trux. It was his best week in over a year.

Trux is an extremely high energy little 5-year-old. With a combined diagnosis of ASD/ADHD, he has several behaviors that even with his medication, can be very challenging even on his best days.

A good day usually means he is calm and focused, can sit and eat for 5+ minutes and easily runs out to the bus when it comes. It also means, he giggles very easily (not always at the appropriate time) and gets overly playful.

A bad day, well, I don’t want to dwell too much on what those look like. But, in general he starts to pull hair and becomes extremely aggressive in his interactions with his siblings an peers.

So, when we didn’t see either of these two categories of behaviors, we knew he was sick.

The first few days, he was lethargic. He would sleep 8-10 hours, drink some Gatorade or some crackers, and then go back to sleep.

For the past week until today, he has been very mellow. And, even snuggled up to me today when I laid next to him watching a movie.

And, for a sad moment I kinda wished I could have this mellow boy all the time.

I wish that I could have him more calm so I could cuddle him when he’s upset, instead of the usual flailing of his arms and legs.

I wish that I could have him more calm so school would be easier for him and he could always be his best in school.

But then, he wouldn’t be Trux.

And, then by the last few days of his sickness, I was missing my active, spunky boy who loves excavators and  Mango Applesauce.

ASD is hard.

ADHD is hard.

But, when they are what makes my boy who he is, I’ll take them as part of his special recipe.

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They are sick, again.

And, we’re off! The stomach bug of 2017 has hit our family hard. It started on Monday when #4 got sick. I thought it was a “one kid and done” type of illness, but I was wrong.

Now we have 4 out of the 5 kids sick and Daddy is sick too.

The hard part? Sometimes it is hard to tell when Stix and Trux are sick. They are not yet at a point in their speech where they can tell us how they are feeling.

I talked about this a few months in my post When they get sick. Back then, Trux was sick and I didn’t know it.

So, with that experience in mind, we have to be so extra vigilant when they start to act different from their “normal.”

So, today we went about our normal Saturday routine of grocery shopping, lunch then naps. And slowly, one by one, each of the kids got sick.

Ginger was the last one to get sick, but she was able to better communicate how she felt. And I was grateful. I was grateful for the fact she can communicate her feelings, but most of all that we understood her.

I can’t stress enough how extremely frustrating it can be to have children who can’t simply state “My tummy hurts” or “My head hurts.”

Or, how frustrating it can be when we take them to a doctor, and we have to answer questions like “Has he complained about his ears” or “Has he complained about a sore throat?”

And when I hear those questions, I want to say, “No, but today he willingly took off his favorite airplane shirt after getting sick, and he didn’t complain. So, that’s why I’m concerned.”

This journey of Autism has kept me on my shoes. It keeps causing me to daydream about how an ideal doctor’s appointment would go for the boys:

Me: (at receptionist) We have an appointment for 1pm.

Receptionist: We can see your right now, we know that Trux will be out of control when you need to wait an extra 15 minutes past your appointment.

Me: Thank you so much!

Or better yet:

Me (to doctor): Yes he’s been sick this week. Temperature of 103

Doctor: Has he complained about his bun being cut? No? Did he take off his airplance shirt? Yes? Well, then he must be very sick and placed on antibiotics immediately.

All kidding aside, we have found a doctor that specializes in special needs kids, and is close to my imaginary doctor above. (though wait times can be a challenge)

So, if you are reading this, please pray our kids get better soon.

And, please remember how blessed you are when your kid can say they are sick.

While we don’t like hearing they are sick, it is a godsend when they can tell us.

 

 

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Mini Milestone

Tonight we took our family to one of many annually recurring social engagements. It entails mass, then dinner with 100+ people, a large portion of them being kids. For most kids it is a fun time to see friends, run around and play games.

But not for Stix or Trux.

One of the many struggles Stix and Trux have (due to Autism) is interacting with their typical peers. For the 4 1/2 year of being in the special needs community, we’ve been hoping for the day when Stix and Trux could enjoy the company of other kids.

And tonight, Stix enjoyed himself.

Their dad and I had decided on a strategy of keeping an eye on our kids, one we call “Divide and Conquer.” We decide who watches which kids, and who will chase after when one wanders off.

At one point, I was in a conversation with a friend and thought I should do a quick scan for all 5 kids. Lo and behold, there was Stix playing with other kids, throwing paper airplanes and running with them. He was smiling, laughing and ENJOYING HIMSELF!

I nearly cried.

Because it has taken 4 1/2 years to see him play with other kids.

That’s 4 1/2 years of him playing by himself.

That’s 4 1/2 years of him isolating himself.

That’s 4 1/2 years of sadness of feeling he’s missing out.

I will cherish tonight’s milestone.

While some parents may write when their child took their first steps, I want this blog post to be the record of the first time I was able to see my child truly enjoying himself, having fun and playing with his peers.

And, in my opinion, it is not just a mini milestone, but huge!

 

 

 

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