Guest Post, Parenting, Special Needs

A Love Letter to My Fellow Autism Mom

BY AMANDA DELUCA

The love language for a special needs parent to feel seen, accepted, and understood is as simple as a head nod, and a “me too” on a zoom call or a quick chat on the phone. Or maybe even in the grocery store where your child is having a hard time.

If you’ve ever been that person for another special needs mom, you’ve changed their life, you’ve made them feel seen, and they thank you for it.

Thank you for sharing your story of walking through the hard, so that mothers like me can learn what may lie ahead.

Thank you for acknowledging my hard, and reminding me it’s healthy to grieve but we can’t stay there.

Thank you for encouraging me to use my voice to advocate for my son and for so many others who share his daily struggles.

Thank you for telling me “I’m not ashamed of Autism, and you shouldn’t be either”.

Thank you for teaching me that love needs no words, and that communication isn’t just speech. For teaching me to be gentle with myself, and my husband.

Thank you for your bravery when speaking about aggression and self-injurious behavior so that the stigma can be shattered and we can work on continuing to normalize it, by publicly speaking about it.

Thank you for calling me when your child just received their diagnosis and confiding in me during one of your most difficult days.

Thank you for inviting my son to the birthday party, even if it’s too hard for us to come.

Thank you for encouraging me to tell my story, to share my hard, and to let the world into our journey.

Thank you for never judging if we light it up blue, say autism awareness or acceptance, say has autism or is autistic because there are no clearly defined rules of what we should be saying and when.

Thank you for saying “I understand” when I talk about meltdowns, sleepless nights, medication trouble, and food aversion.

Thank you for acknowledging my hard, and trying to help me figure out the solution.

Thank you for providing me with powerful mantras like “find the joy”, “dreams don’t die, they change”, and “on we go”.

Thank you for simply saying “me too” when I felt like I was the only one.

Thank you for always lifting me up out of the dark hole of the internet, and holding my hand until I’m ready to try again tomorrow.

The love you have for your children gives me hope, your bravery to share your story gives me confidence, and your honesty about this journey gives me the strength to carry on.

Thank you for all of your love, A fellow Autism Mom

Thank you to Amanda DeLuca for sharing this piece with us. It originally appeared on her blog https://jacksonsjourneyjacksonsvoice.com/

Amanda lives in Ohio with her husband, is a mom of 2 to Monroe, and Jackson. Her son is on the autism spectrum and is what inspired her to begin her journey through advocacy. In her free time she enjoys teaching at her dance studio, co-hosting the Momming Autism podcast, and writing for her page Jackson’s Journey, Jackson’s Voice.

Guest Post, Social Media, Special Needs

The Journey From a Hidden Secret Life to Autism Advocate

BY JACQUELINE WAXMAN

True confession: My son is 14. For most of his life he had no idea that he had an Autism diagnosis. Actually, pretty much no one had any idea about his Autism diagnosis.

We saw one doctor, only, at his pediatrician’s office and she knew my preference of not telling my son about his diagnosis.

Any specialist we went to – I would either not tell about his Autism. Or, I would pull the doctor aside and tell the doctor “he has autism but doesn’t know – please don’t mention it.”

My son completed early intervention into preschool disabled into school aged child with a learning disability. As a professional in this field I “knew” he had Autism long before a doctor diagnosed him.

Our first diagnosis came at around age 7. The school pushed for a formal diagnosis to expand services. They paid for a psychiatrist. Diagnosis: ADHD, Anxiety, Autism*.

The report was short, sweet and to the point. Until I read the last line. The *.

Autism*: high functioning with non-classical presentation.

That wasn’t even a real diagnosis. What did that even mean? What is non-classical presentation?!

Essentially, at the time and for the purpose, it meant that he didn’t show enough signs of Autism to diagnosis it but too many signs to rule it out.

I pushed the report out of my mind.

Besides, he had just started medication for the first time and it was amazing. The change was unbelievable.

The ADHD medication helped so much that I wanted to write a love letter to the manufacturer. Literally, I considered it.

This calm continued for a few years. Until about age 10. When our life fell apart.

I went back and forth in my brain. He was doing so well. Maybe he didn’t really have Autism after all. Or, at least not the type I had to talk about.

The beauty of disaster is that sometimes it forces you to actually be what you were meant to be.

Let me explain.

My marriage fell apart. My dad died. I was forced to sell my marital home and move to my mom’s house with 3-kids. We all slept and lived out of one room.

The more pieces of life that fell, the more things changed at a rapid fire pace, the more apparent Autism became.

Autism likes stability. My son couldn’t handle the rapid fire changes.

Autism likes repetition and schedules. None of which we had anymore.

The melt downs were new. They were loud and violent. And, in the early days often involving the police. I’m not sure I’ll ever forget the frantic 911 calls. Watching it take 5+ officers to calm down my, not so little, boy.

Autism was now not only apparent. It was loud. It was scary. And, it was screaming “Here I am and look at me.”

I could no longer hide Autism.

Ironically, it became something I spewed off frequently. Every time someone would tell me how to parent my child, or what they would do different or what I was doing wrong I would share that he has Autism and is having a hard time adjusting to so many changes at one time.

Something I spent so much time hiding suddenly became my defense.

Autism took over my life.

I’m a social worker by profession. I tell people how to navigate systems and fix challenges. I know every in and out there is to possibly know.

Yet, over and over and over I wasn’t finding appropriate nor helpful services for my son.

I was lost.

I was heart broken.

I was furious.

In order to make a change I was going to have to be the change.

My son is kind, compassionate, fiercely loyal and incredibly intelligent. He’s an amazing kid.

The MOST amazing parts of him are the parts that are influenced by his neurodiversity.

Autism was no longer something I could nor wanted to hide. It was something I had to embrace.

I was so afraid of labeling my son and therefore limiting him. When in all actuality I was limiting him by not being honest and forthcoming. His Autism is no more or less a part of him than my anxiety is a part of me. Or, someone else’s diabetes.

My son was well aware of his differences and limitations. It used to be something he thought was his fault. Something he had done wrong. Which wasn’t at all the case. By giving him the tools he needed to understand why certain things bother him or why he can’t do certain things I empowered him to embrace his differences.

In April, spread Autism acceptance. Because Autism acceptance is the cure.

Thank you to Jacqueline Waxman for sharing this piece with us. It first appeared on her blog page www.facebook.com/walkingthingrayline/

Jacqueline Waxman, M.Ed is a writer, trained social worker and special needs Mom. Her passions include writing, photography and advocacy. Jacqueline is currently collecting anonymous contrinutions for her project “The Secret World We Live In: The Untold Stories of Parenting Special Needs.” For more information, please visit Jacqueline’s Facebook page www.facebook.com/walkingthingrayline/ You can follow her page at Walking a THIN Gray Line.

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.

Parenting, Social Media, Special Needs

The Why Behind I

I have always been a lover of the written word. I love to read and I love to write. I spent my college years studying communication and the art of crafting it.

Post college graduation I ended up stuck in a job I hated that was the furthest thing from creative. I still read, but I had pretty much abandoned my writing aside from a rambling Facebook post here and there.

In Spring of 2018, my oldest son was diagnosed with Autism Spectrum Disorder. Around that same time my husband landed his dream job and the dream of me being able to stay home with our kids became a reality. By that October I was a full time stay at home mom.

I love being able to home with my kids. I am grateful for my husband’s hard work that allows us this opportunity. The transition from the workforce allowed me to also think about creative outlets again.

I had been toying with the idea of blogging for a while. I wrote a guest post for one of my favorite blogs and constantly formulated blog ideas in my head. But, to be honest, every single time I came close to taking the leap, I talked myself right out of it.

Enter Toledo Moms

Earlier this year Toledo Moms launched in my area and I was an absolute fan from the start! It is an amazing resource of moms in my area that covers all sorts of life stages and topics.

They put out a call for writers in February and I applied. I was hopeful and nervous about putting myself out there, but so excited to be welcomed on their team. I am proud every day to be one of the amazing Toledo Moms.

Joining up with Toledo Moms and writing with them relit my fire. It gave me the push I needed to start my own blog and put my thoughts out there.

So I did it. This little work of heart launched this summer. It is a work in progress.

That’s the how, but what’s the why?

So, I have explained how I got here, but what’s the point? What is my point? Why do I put my thoughts out there like I do?

Well, it is my passion. I love to write. I love to create. I love the craft with words. I don’t think I have the great American novel in me at this point, but I do have some pretty big thoughts and opinions.

And, Autism. I have two boys who are on the spectrum. They are at two very different places in their journeys and their autism manifests in very different ways. One very important thing I have learned on this journey with them is that even though autism is fairly prevalent, it is still very misunderstood and the resources are still very limited.

When my Jack was diagnosed I was sent out into the world with basically a wing and a prayer. I learned to research. I learned the lingo. I sought out other mothers who were navigating similar paths. I learned a lot from some amazing moms who have chosen to share their hearts and families with the world on Facebook and blogs.

I also learned to advocate like a mother. I learned very quickly what it means to be the driving force and push for evaluations, push for funding, and to seek out the right interventions and providers.

I choose to use this blog in part to be a voice for my sons and for others like them. Education is key and understanding is so important. If I can spread some awareness, sprinkle some kindness, and help someone else along the way, I will consider it a success.

I am me first.

I don’t just intend to blog about autism. It is a big part of my life now and a huge piece of our family dynamic, but it isn’t everything. My boys have autism, it doesn’t have them. So, while it is always there and always with us, it still isn’t everything.

I’ve got a pretty awesome husband and I have two amazing girls to go right along with my boys. We have some pretty awesome (mis)adventures that I like to share too. There is a lesson in everything.

While we are living in a moment in time where the world seems so heavy and sad and angry, my message is kindness and hope and the power of yet. I hope that always shines through.

Parenting, Special Needs

What I Wish Someone Had Said to Me

Dear Mama,

Today you received your little one’s diagnosis. You have answers. Sometimes answers make more questions. Sometimes answers suck. Sometimes answers are just hard to absorb.

Today is a hard day, I know- I’ve been there. Sometimes there is no preparing your heart no matter how hard you have tried.

The day I received my older son’s Autism Spectrum Disorder diagnosis I was a cornucopia of emotions.

I was sad.

My heart grieved. My tears weren’t because there was something “wrong” with my child. The tears fell because I was accepting that autism would be with us forever and autism would complicate some things for my boy. All parents want life to be as simple as possible for their children and autism added a caveat of hard to his life.

I was angry.

How many times in our lives do we say, “It isn’t fair?” That is how I felt. It didn’t feel fair that my boy would struggle.

It didn’t feel fair and I felt angry that the pediatrician didn’t take me seriously when I first suggested something wasn’t right. We lost precious months of early intervention because I wasn’t being taken seriously.

I was lost.

Okay. We had a diagnosis, but now what? They hand you a nicely typed report and send you out to navigate it yourself. There is no one size fits all therapy combination and nothing holds guarantees. It took me a moment to find my footing again.

I wish that someone would have told me that it was okay to feel my feelings. Because you know what? It is okay to feel every which way you feel in this moment!

Be mad. Be sad. Be relieved. Be stressed. Be strong. Be whatever you need to be. Give yourself the grace to feel what you need to feel.

I don’t have a crystal ball and I don’t know that it will ever be “alright” in my life so I can’t truly tell you it will be “alright” in yours.

What I can tell you, though, is there is nothing like the power of a mother.

There is nothing like the unstoppable Mama Bear who will be there and advocate and take to task whoever’ be it a doctor, insurance company, therapist, school, whoever she has to to fight for her child.

There is nothing like a Mama who loves beyond measure and believes in her child.

No matter where this path takes you, know that you’re not alone.

And know that you and your sweet child will be okay- whatever your “okay” looks like.

One day you’ll look back and these feelings you have now won’t be so raw. You will feel stronger and more seasoned. You will have a new understanding of yourself, your child, and the world around you.

You will get to the other side.

I’ll be cheering you on along the way.

Love,

Me