Parenting, Special Needs, The World We Live In

World Autism Day

World Autism Day is today– April 2nd.

This is our fourth World Autism Day. The irony is not lost on me that it was a beautiful day much like today in April, a month that shines the light on Autism, some years ago when we became personally aware of Autism as it entered our lives.

I could pepper you with statistics– 1 in 54 children are living with Autism. Boys are four times more likely to be diagnosed than girls. Autism comes with a slew of co-morbid conditions. Early intervention is essential. Funding for much needed therapies can be very difficult to obtain. There is no cure.

But the stats are stats and what is more important than stats are the living breathing 1 in 54 people those stats represent.

What is important are the advocates out here fighting for awareness and acceptance.

What is important is making the world a kinder, more inclusive place for those living with Autism.

On this day you may see feeds similar to mine flooded with words about Awareness and Acceptance. Both are important so, so important.

I believe that awareness leads to understanding and understanding leads to inclusion and inclusion leads to acceptance. As a mama to two amazing little boys on the spectrum, that is all I want for my boys– acceptance. I want them to be included, feel loved, be treated with respect and kindness, and be accepted for everything that they are.

Autism is a part of them, but it is not the definitive part or the sum of all their parts. It is just a piece of the puzzle that makes them whole. They are kind and sweet boys who love hard and deserve acceptance.

We celebrate our children on this day. We celebrate them for who they are and who they will be. We celebrate them for all the hard fought, hard won accomplishments. We celebrate the families and the caregivers. We celebrate the friends. We celebrate the teachers and the therapists.

We celebrate each and every single person who sees us and loves and accepts our family.

My hope is that on this World Autism Day you take some time to learn more about Autism Spectrum Disorder. My hope is that you will talk to your children and teach them about differences and being accepting and kind. Talk to them about inclusion and understanding.

Because I promise you if you do you will be part of the change this world needs.

You will be part of the change OUR world needs.

I would not change my boys for the world, but I surely would change the world for them.

Parenting, Special Needs

Five Things I Wish I Had Known About Life With Autism

Autism Spectrum Disorder became a constant companion in our life one April day a few years back. I think back to that day and realize how naive I was and how unprepared for the journey I was. I wish I could go back to myself on that day with my tear filled eyes and fill myself in on a little of what I’ve learned so far.

1. It is going to be OKAY.

It will be okay…whatever your version of okay looks like. It may be filled with therapies and mountains to climb and hard at times or it may be smoother with less interventions needed. However it looks, you will adapt and you will learn and you will grow. And you will be okay.

We’ve managed to find our stride and what works for us. And is it how I originally pictured life? No. But it is okay and we’re doing alright.

2. Self, please know that your child has not changed.

The world might look and feel a little different right now and that is okay, but your baby is still your baby. Both of my boys are on the spectrum and both of my boys are still the same happy, loving, and adventurous boys they were before a doctor ever uttered the diagnosis that felt like it changed everything. It really took me a minute or two to get that through my head, but it was a valuable lesson to grasp.

3. My child has Autism, but it does not define him.

Autism is a part of my boys. It is simply one facet that makes up their whole. It doesn’t define them. They have Autism. Autism does not have them. They are smart because they are smart. They are funny because they are funny. They are kind, loving, and stars in my universe because they are them and not because of or in spite of any diagnosis.

4. If you have met one person on the spectrum, you have truly only met one person on the spectrum.

Yes, there are some shared characteristics. Yes, there are common ways in which Autism manifests itself in people. But, just like you or me or the person next door, all people on the spectrum are unique too. My two boys are very different and their Autism looks very different as well. They are unique. Just because your cousin’s neighbor’s sister’s friend has a child with Autism doesn’t mean you know my child or what they need.

5. Subject Matter Expert: My Kids

Just because I am a mother with two boys on the spectrum doesn’t mean I am a subject matter expert on Autism. Shoot, I am far from it. What I am an expert on is my boys. I know what works for them. We’ve worked hard to make progress and to find the right diet of therapies. I know what makes my boys laugh or cry and I know when a situation is too much for them. Generally, I can see a meltdown coming from a mile away.

Autism looks different in both my boys. What works for one doesn’t necessarily work for the other. We’re figuring it all out as we go. But you know what, we’re all going to be okay.

“Don’t give up! I believe in you all. A person’s a person, no matter how small!” — Dr. Suess

Parenting, Special Needs

“Build your tribe. Find your village. You’re going to need them.”

“Build your tribe. Find your village. You’re going to need them.”

I remember looking up at our pediatrician through tears as she said those words to me shortly after delivering my son’s Autism diagnosis.

She explained how dynamic and changing our lives would be and that we would need to find others who understood. The gravity of those words didn’t quite register with me at first.

I mean, I had friends. I had family. What did she mean I needed others?

At first, I was lost in my grief for an uncomplicated childhood that would suddenly be filled with therapies and appointments.

My heart ached for knowing that this world is not kind to those who are viewed as “different.” It killed me to know that I wouldn’t be able to protect my son for that.

It was clear early on that there were just some people in our lives that were there for a season. They fell away as things changed. I don’t fault them– the friends who couldn’t understand enough to offer compassion or the family who couldn’t understand why we couldn’t attend every gathering.

We encountered those who wanted to deny the existence of my son’s disorder. They just didn’t see it themselves so it couldn’t be so.

Our parenting was questioned by those who felt we failed our son by just accepting his diagnosis. I had someone offer me the “cure” to Autism which I believe fell somewhere between essential oils and drinking bleach. When I politely declined, she told me it was my fault my son was damaged and I should want to fix him.

All of these instances fell so early on in our diagnosis when it was still so raw.

In those first few months following diagnosis as we tried to line up therapies, enroll in early intervention, and shore up funding, I needed a life preserver so badly and it just seemed no one wanted to throw it to me.

I wanted to talk about it. But, it felt like no one wanted to take on those hard conversations. No one wanted to hear my 3 am worries spoken out loud. I felt as though everyone expected me to just smile and carry the weight on my shoulders without question.

I was sitting alone in the dark.

But, then suddenly, I wasn’t. I have an amazing family. They help with therapy appointments. They love unconditionally and they wrap us in love.

I have some pretty fantastic friends who love and accept my family as their own. My fellow Mama Bears are always there to listen on the hard days and offer no judgment.

They love us hard and we love them right back. Finding your tribe and having support can make all the difference.

Autism moved in to our lives on a beautiful April day and never left. It will be a lifelong companion. It will always be part of our dynamic. But, I’m not alone. My family is not alone. Our tribe is a good one.

“When you can’t look on the brightside, I will sit with you in the dark.” – Alice in Wonderland

Special Needs, The World We Live In

Speak Up and Speak Out

A stapler. A piece of paper. Staples.

Basic office supplies, right?

Now imagine you sent your child to school only to have them come home with a note to you that had been stapled to their head.

I bet you would be pretty pissed off.

Now imagine you were then told by the superintendent that the person responsible for this, an aide in your child’s classroom, was only going to receive a note, a warning in their personnel file not to do it again. She’s still in a classroom and with vulnerable children.

I bet you would be livid.

This isn’t a made up scenario.

It happened.

It happened to a little boy with Autism in Boardman, Ohio.

This child is verbal and was able to tell his mother what happened. Had he not been, there is a pretty good chance that she would have never known because the school did not notify her about it.

Take that in– an aide stapled a note to a child’s head and then they didn’t even tell the parent about it.

I tell you what, this isn’t even my child and my level of anger and disgust about this incident is through the roof.

This is an example of why I spread awareness and why I advocate and talk so much about my boys.

Even though my children are in a educational setting where they are loved and treated with dignity and respect and cared for, I will continue to speak up and speak out for other children who aren’t as lucky.

So, if you’ve been following this story like I have, you may be wondering what you can do?

Reach out to the Boardman Local Schools Board of Education. Tell them that a written reprimand is not enough. Tell them that their attempt to sweep this under the rug will not go unnoticed.

Speak up and speak out because all of our children deserve better than what the Boardman Local Schools has given this child.

Contact info for Boardman Schools:

Vickie Davis, Board President
Email: vickie.davis@boardmanschools.org
John Landers, Board Vice President
Email: john.landers@boardmanschools.org
Jeff Barone, Board Member
Email: jeff.barone@boardmanschools.org
John Fryda, Board Member
Email: john.fryda@boardmanschools.org
Frank Zetts, Board Member
Email: frank.zetts@boardmanschools.org

Tim Saxton, Superintendent
E-mail: Tim.Saxton@boardmanschools.org
(330) 726-3404

https://www.boardman.k12.oh.us/

https://www.wfmj.com/story/43314584/boardman-teachers-aide-reprimanded-for-stapling-paper-to-students-hair

fcvblogsquad #floodthefeed #macadematters #boardmanohio

Special Needs, The World We Live In

You Need to Do Better

The teacher’s aide involved STAPLED a note to the head of the child involved.

Read that again.

She stapled a piece of paper to the skin of A CHILD because he forgot a water bottle at home.

ARE YOU KIDDING ME?

As if that wasn’t enough, the punishment didn’t fit the crime, friends.

The aide was simply reprimanded. A note was placed in her file. She kept her job. She’s still working in classrooms with children. She faced no criminal charges.

Her punishment was a NOTE– a warning. Do people really need to be warned that they shouldn’t staple things to the head of other people? I thought that was really just basic common sense. Do we need warning labels for staplers now?

And the child involved?

YouHe’s afraid to return to school and rightfully so. I cannot even begin to comprehend the emotional damage this woman cause to this child. His trust was breached and she succeeded in breaking his trust of people he hasn’t even met yet.

She also broke the trust of the parents for every single educator they have to hand their baby over to. I can’t even imagine how they can stomach the idea of sending him to school anywhere ever again.

As a parent you have to be able to trust the people who’s care you leave your children in.
If you’re a parent of a special needs child you need to have that blind faith and trust even more so.

All children are vulnerable, but a child with special needs is even more vulnerable. It is not unreasonable to expect that you can send your child to school and not have them return home with having had a paper stapled to their head by their classroom aide…or their teacher…or the janitor…or anyone.

This is not okay.

Not holding this woman accountable for her actions is not okay.

The school board, the superintendent, the principal, the teacher, and the aide involved all should be ashamed of themselves.

They failed this child and in failing to protect him, they are failing to protect all the students in their charge.

They need to do better.

https://www.wkyc.com/article/news/local/boardman-teachers-assistant-staples-piece-of-paper-to-students-head/95-ef8cb028-dd45-46f9-bfc3-89b78743d01f

https://www.wfmj.com/story/43314584/boardman-teachers-aide-reprimanded-for-stapling-paper-to-students-hair

#fcvblogsquad #boardmanohio #macadematters #floodthefeed

Parenting, Special Needs

Worry vs Wonder

I am a natural worrier.

I can think, rethink, and worry out every single scenario possible. Becoming a parent only amplified that.

From the moment I found out I was pregnant, I worried. Every single twinge and ache and sensation worried me. I scoured the pregnancy books to calm myself and prepare for what was to come.

Along with that worry came wonder.

I wondered each pregnancy who my babies would be and who they would become. As I have watched them grow there has been wonder in all they do and all they are. Never far away, though, was worry. In the early days I scoured all the parenting books to calm myself and prepare for what was to come.

Fast forward to an April day where I sat in the pediatrician’s office when I poured out my worries about my son and his development. There is no parenting book to prepare you for the news that your child has a disability.

That day set off a new set of worry and wonder.

I worried that life would be unnecessarily hard.
I worried that he would never speak.
I worried that he would never be independent.
I worried that he would be lonely.
I worried he would never have a friend.
I worried about what would happen to him if something happened to my husband and me? Would someone love him the way we did?

I’d lie awake at 3am and worry about anything and everything I could imagine.

Frankly, I wondered what the hell we were going to do. What was the right course of therapy? What was the right type of educational setting? How could I juggle all the appointments and evaluations with work? How would we pay for it all?

But what replaced that worry and wonder?

Wonder of how hard my boy worked. Wonder at how far he has come. Wonder at all he knows and tells me. The worry is there, but they showed us odds and we exceeded the expectations.

I wonder sometimes how we did it all, but we made it through.

Then last March. Deja vu. Round two began with another diagnosis of my other boy. All those original worries revisited me.

But once again so did the wonder as he scaled his mountains.

I once read that faith and worry cannot exist in the same place so you have to decide where to live.

For the most part, I believe that.

When I focus to much on the worry or the wondering, I lose sight of the wonder of all that is good and all that is amazing.

The worries will always be there.

I will always wonder if I am doing enough for my boys or if I can lighten their load somehow.

But most of the time, the worry and wondering is replaced by the wonders that are my boys.

Social Media, The World We Live In

The Content of Character

I sat down to write a blog post today. It was meant to be about the new year and resolutions and changes. I have tried to be more organized in this new year. I want to be focused and wrote in my planner to sit down and write that post today.

But, today I can’t. I just can’t.

I am sorry if what follows here isn’t your cup of tea. I am sorry if you find yourself offended because I may have a different viewpoint from yours. This blog is a work of my heart and right now I feel like I need to speak what is on my heart.

This world feels like it is on fire.

Yesterday, I tuned in to watch the process being conducting in our Congress. I expected it to be ugly. I didn’t expect what I saw.

I didn’t expect to be watching a discussion in the Senate as the feed cut to black and the footage of what was going on outside the Capital Building began to unfold.

I’ve seen footage of people storming government buildings and calling for the heads of elected officials before…on TV….in movies….in other countries. Not here. Not in the United States of America.

Trump supporters gather outside the Capitol, Wednesday, Jan. 6, 2021, in Washington. As Congress prepares to affirm President-elect Joe Biden’s victory, thousands of people have gathered to show their support for President Donald Trump and his claims of election fraud. (AP Photo/John Minchillo)
UNITED STATES – JANUARY 6: Rep. Jason Crow, D-Colo., comforts Rep. Susan Wild, D-Pa., while taking cover as protesters disrupt the joint session of Congress to certify the Electoral College vote on Wednesday, January 6, 2021. (Photo By Tom Williams/CQ-Roll Call, Inc via Getty Images)

It was not right.

What happened was wrong and so many levels. It wasn’t peaceful protest. The peaceful part of the protest ended when a mob of individuals made the decision to march to the Capital Building, storm it, and get people killed.

This “peaceful” protest turned into an act of insurrection and a literal coup. It was wrong. This should bother everyone regardless of who you voted for or what you support.

The aftermath was quite possibly more disturbing.

Immediately, social media blew up. A simple scroll can find you all sorts of incendiary tweets, posts, memes, and conspiracy theories.

Worse than that, was all the people coming out to justify the actions. My mind was blown by the excuses. I was called a sheep. I was told to stop drinking the Kool-aid. I was told that the actions and words of people don’t matter. I was told all the hate flying around didn’t matter as long as the economy was good. I was told that the actions of these people yesterday was okay because they are mad and they are frustrated about these election results. And what about anti-fa? What about BLM? What about? What about? What about?

What about it?

When did deflection become a defense of the indefensible? When has “whataboutism” replaced calling out bad behavior? Why is anyone trying to defend this?

My four year old doesn’t get out of punishment for pushing his brother because his sister yelled at his other sister months ago. An attempt to justify by pointing out the behavior of someone else doesn’t work from children and it certainly isn’t acceptable for full grown adults.

Now, I try to avoid political discussions if I can. I believe we are all entitled to our opinions and views and that is fine. I don’t think me harping on you about my political policy views is going to change any of yours or vice versa. I would just rather not have those conversations especially when all too often they become disrespectful.

I will say this, I believe it is okay to think differently than me or your parents or your neighbor. I can respect we all don’t think alike, but there is a line where it becomes more than a difference of opinion.

But, I will tell you what I believe and what will never change.

Actions have consequences.

Sometimes, as difficult as it can be, there are grey areas between what is right and wrong, but yesterday was not one of those times.

Kindness and love will never be out of style. I believe they are attributes and not weaknesses.

The content of one’s character matters.

Words matter.

A few extra pennies in my 401k will never be worth more than the price of my soul.

If you want change in the world, you need to be part of that change. Vote. Advocate. Run for something. Be the good and be the change.

Hate will always be in the world. But as long as love exists, hate will never EVER win.

Be the good in the world. Be a helper.

Uncategorized

The Hindsight of 2020

Here we are. It is another New Year’s Eve. 2020 is finally coming to an end and we are preparing to turn a page into the next year.

On this night last year, we celebrated with friends and proclaimed that this would be our year.

Spoiler Alert: It Wasn’t.

2020 wasn’t the best of times, but for me, personally, it wasn’t the worst of them either. I know how fortunate I am to be able to say that.

No, the year did not go as planned. Crap, I chucked the planner in the trash around mid-July. But, we came through. We came through with our health, a roof over our heads, and each other. We were lucky to not lose a job or income or any loved ones to the pandemic that raged on. I count those blessings each and every day.

Yes, this year held disappointments.

We missed out on birthdays and holidays and time spent together with family and friends. We learned how to wear a mask and made social distancing part of our lifestyle. We cancelled trips and gatherings and adjusted as we went.

We remotely learned. I learned that being a teacher is 100% not within my general capabilities. I struggled to help my daughter with fourth grade math and maintain my sanity and patience along the way. I appreciate teachers more today than I ever have.

Resiliency and going with the flow were key to our survival this year. We learned to swerve and then swerve again and again and again.

But there was a bright side too.

No, 2020 wasn’t all bad.

Before the pandemic stopped us all, we had a chance to take a vacation to Mexico with my parents and one of my brothers. It was a wonderful calm before the storm that came.

My cousin and oldest friend who I had not seen in several years due to military life came home and we were able to spend time together with our babies. It was something my heart very much needed.

I spent more time together with my husband and children in the last 10 months than we have in our entire lives together. The slowdown and slight pause in our lives was the gift we didn’t know we needed. The time spent watching movies, playing in the yard, having game nights, and dancing in the kitchen will live in my heart forever.

Yes, 2020 will be memorable for ways I never envisioned coming.

There have been harder years for me than 2020 and there have been much better years than 2020. But, in it all I lived. I loved. And I learned.

Some lessons were harder than others.

The world showed a lot of it’s ugly this year. There were people I deeply respected that I just can’t any longer. There was cruelty and there was division. Somewhere along the line kindness became weakness, disagreeing peacefully became old hat, and helping out your neighbor became a faux pas.

But. There was also beauty too. There were simple acts of kindness. There are people who fought for change and will continue to do so because if nothing changes then nothing ever changes. There were the soft hearts that kept on doing what they do and sharing their beautiful hearts because if they didn’t, then the world would win.

Intent was my word for 2020.

I wanted to be intentional in all that I did this year and I think in some ways I accomplished that. In some ways, I just survived.

As I reflect on where 2020 left us, I realize I learned a lot about contentment this year and appreciating what I have. I have four walls that keep me safe and warm. I have a doting husband and four pretty fantastic kids. I have an amazing family and a pretty spectacular collection of friends. This year really highlighted who and what mattered most.

My biggest lesson or self realization, if you will, came from really understanding the difference between a want and a need. It’s more about learning to love what you have than always having what you want.

Focus

As we move into 2021, my word for the year is focus.

I want to focus more on cultivating friendships and creativity and even my garden. I want to continue to spend time with family and friends and love my tribe with all I have. I want to focus on my physical, mental, and spiritual health and that of my family’s. I want to focus on doing more of what matters to me and what is important to me. I am learning to say no and accept the unique challenges in my life.

Happy New Year’s Eve!

I wish you all health and happiness in the coming year. I hope you are safe tonight and celebrate in whatever way feels right for you.

I’ll see you next year.

A Few of My Favorite Things, Travel

Nashville Strong

As some of you may know, I am Ohio born and bred, but I spent a couple of the best years of my life in Nashville, TN while pursuing my undergraduate degree at Belmont University.

That time in my life is so special to me. I finished degree and had some of the greatest experiences. I met some of the most amazing humans there and made some of the best lifelong friends that a girl could ask for. It was the place where I found myself and really came into my own.

Nashville will always be home to me.

Yesterday morning a horrific act of what can only be described as terrorism happened in Music City. Some one for some reason decided to set off a bomb on 2nd Avenue. It destroyed buildings and businesses and it displaced residents from their homes.

Thankfully due to the quick thinking of first responders the damage to human life was minimized.

If you have ever been to Nashville, 2nd Avenue is a big part of the tourist district. I walked that street so many times in my years there venturing in and out of bars, restaurants, and shops.

The thought of what thr damage could have looked like had it occurred at a different time of day makes me ill.

It makes me sad that someone believed that they had the right to damage, break, and destroy what was not theirs. It makes my heart heavy to acknowledge that kind of evil in this world. These kinds of acts can never be justifiable.

My heart is with that Southern city.

I mourn with Nashville for the damage and heinous act that was perpetrated yesterday morning.

I loved my time living in Nashville and I would move back given the chance. I love the place and the people and my time there. I will always claim it as “home” to me.

Nashville, you’re strong and resilient.

We are all praying for you.

Parenting

Taking the Attitude of Gratitude

This year has been a tough one. I think it threw us all for a loop. We all had plans and goals and dreams for the year that the world has other plans for.

We were cruising right along until a worldwide pandemic and slow down stopped us.

If I take a moment to step back and reflect, there is a lot for me to be grateful for during this season of thankfulness.

I would not fault anyone for marking this the worst year and writing it off as such. It is easy to lose sight of all the great things that 2020 brought when we think too much about what it didn’t.

I worked full time for the first eight years I was a parent. I missed out on so much extra time with my older kids. This year gave me a lot of additional time with my kids that I wouldn’t have otherwise.

📷 : PS Photography, LLC

During the shutdown we spent more time as a family enjoying each other than we ever have. We played games. We binged on movies. We spent ALL the time we could outdoors. I think our front porch, front yard, and swimming pool got more use than they ever have.

My husband and I spent so much more time talking, connecting, and yes, bickering than ever. I wouldn’t trade any of it though.

I think I spent more time talking to my parents and siblings this past year than I have in a long time. Using FaceTime requires a bit more communication than just sharing the same space in a room.

We were and have been (knock on wood) able to maintain good health.

My husband’s job has survived a shut down.

We have a warm, safe space to lay our heads down in each night.

The fridge is stocked and the lights are on.

We have good friends and a tribe that loves us and it is there for us. They allow us to return the privilege.

I am thankful for the amazing teachers in my children’s lives that worked so hard this year to be partners in learning with us. We are so lucky to have the educators we do who love our children as much as we do.

We have been really lucky to have amazing therapists for our boys. They have both made amazing strides. I am thankful for finding them and for all the amazing work they do.

I have really learned that sometimes life is best lived when you finally get that it isn’t about always having what you want, but wanting and appreciating what it is that you have.

When you take the time to realize who and what really matters, you’ll find that you’ve really missed out on nothing.

📷: PS Photography, LLC