Parenting, Special Needs

The Keeper

I’m the keeper in my house.

I keep the calendar. I keep the lists. I keep watch. I keep the silent prayers in my heart. I keep the budgets. I keep the snacks in my purse.

I keep our house running like a mix between a well oiled machine and a chaotic pirate ship.

I keep everyone taken care of.

It is just what I do.

But before I became the keeper, I was someone else.

There is the girl I was before I became a wife and mother– before my world changed.

Sometimes I miss that girl.

That girl, she was spirited. She was loud and sometimes messy. She didn’t always get it right. She had plans and she had goals.

I miss her carefree spirit. I miss her laughter. I miss her boldness– the type of bold that packed up and moved to a city far away to live out her dreams and set the world on fire.

It was that same kind of bold that saw her meet the man of her dreams and pack back up and move right back to where she started.

Love changed it all.

Once that girl found the one– when I found my one, the path changed. Suddenly setting the world on fire wasn’t what I desired any more.

My goals morphed and became about building a life and a home and a family.

So we did just that.

I became the keeper.

I keep the vows. I keep rocking the babies. I keep moving forward.

I keep on keeping on.

But, I’m more than the keeper.

Yes, I am a wife and mom.

Most of my days revolve around being a caregiver for my family. That is where I am in life.

I have four children and two of them have Autism. There’s a lot that goes into keeping my family rolling along.

It is the greatest job I have ever had. It is also the most exhausting and demanding.

But I am also a daughter, a sister, an aunt, a cousin, and a friend. I am still me.

Yes, somewhere along the line I lost a little bit of myself. I lost touch with the girl who used to be me.

But I’m working on it.

I’ve started to prioritize myself a little more. I take time for myself to read or write or simply exist in my own company.

I’m not the girl I used to be, but I’m more than the keeper.

And I’ll keep going.

I’ll keep learning. I’ll keep advocating. I’ll keep evolving.

I’d like to think the girl I once was would be proud of the woman I’ve become.

Parenting, Special Needs, The World We Live In

Something ‘Bout This Time of Year…

Tomorrow is the last day of the school year. A year that has felt like a really long year– like really, REALLY long.

Last school year ended in a bit of dumpster fire, but in a lot of ways the 2020-21 year told the previous one to hold its proverbial beer.

But, it is ending with a bit more normalcy than we’ve seen in the last 14 or so months.

My kids’ schools were able to put on some treasured year end traditions. They made things like our annual field day happen. They gave the kids a chance to take a break from all the hard work and let them be kids like they had been pre-COVID.

Our superintendent sent a beautiful email today thanking all of us for our hard work and collaboration and for a successful school year. He encouraged us to take the next few months to relax, disconnect, and be families.

And I am here for it.

I am ready for the slower pace of summer. I am ready for the extra time with my kids and to take a break from the daily grind.

However, if you are anything like me, this ending is bittersweet.

To be perfectly honest, the end of every school year is a little bittersweet to me. It signals the end of another chapter. I’m not so good with endings or goodbyes.

It also makes me aware of how speedy the 18 summers of childhood go by.

There was a lot of growth with all four of my kids in my home. Tomorrow after we pick them up one last time we’ll celebrate all they achieved– honor roll, killing virtual learning, mastering counting numbers and reciting the alphabet. We will celebrate all of the big and the small wins.

As this school year ends, that’s what I want to remind you to do, my friends– celebrate ALL the wins.

Maybe your Senior is graduating after a really strange last two years of high school. They’re donning caps and gowns and ready to set the world on fire.

Maybe your middle school child learned a new skill this year or tested into a higher level of a subject academically. They did this in the midst of a pandemic, y’all.

Maybe your painfully shy child stepped outside of their shell and made new friends. They cultivated these friendships in all sorts of new and creative ways this year.

Maybe your child rocked their IEP goals. Now they are off to the next level of learning when a few months ago this didn’t even seem possible.

Maybe your child just made it. Maybe they just survived the year and are no worse for the wear. That’s okay too.

Celebrate it all because they just moved their mountain and they’re on to the next one.

And in the words of the late great Dr. Seuss, “You’re off to great places. Today is your day. Your mountain is waiting so get on your way!”

Happy Summer, friends. Only 100 short days until we get to do it all again. Let’s make them count!

Parenting, Social Media, Special Needs, The World We Live In

Raising Them Kind

Kind people are my kind of people.

The older I have gotten I found this to be more and more true. I don’t have the time or patience for pettiness and being mean simply because you can.

When I was pregnant with my oldest I remember telling my husband that our child could be anything they wanted to be, but they couldn’t be the “mean kid.” There would be no bullies in this house. I’ve spent my 11 years in parenting reinforcing that believe in my children.

I’ve tried my best to raise them up and raise them kind along the way.

I’ve taught them to think before they speak– is it true? Is it necessary? Is it kind? If you can’t answer yes to all three of those questions then perhaps you shouldn’t say it. That doesn’t mean they can’t stand up for themselves or assert themselves, but it does mean they do it in a respectful manner.

Becoming a parent of two boys with special needs really puts kindness in a whole different light for me.

We live in a world that isn’t built for those who are different, who doesn’t accept those who don’t “fit” and is quite often unkind because of it. The thought of this is quite possibly what broke my heart the hardest on diagnosis day– that the world was harsh and I couldn’t fix that for either of them or couldn’t always shelter them from the hurt ahead.

We fight every single day for acceptance and inclusion and yes, kindness for our boys. My little guys are the sweetest, most loving boys and just want that in return.

There have been moments like the time at school pick up that Jack introduced me to “Friend,” a little boy who would go on to become his best friend, that have made me feel so hopeful.

There have been those moments of pain when my heart has broken for them like when a neighbor child purposely excluded them loudly exclaiming that she didn’t want to play with them because of how “weird” they are. The response from her mother about it broke my heart even more.

My daughters see this and it has made them both two of the most empathetic humans you could meet. I see their kind hearts reflected in how hard they love their brothers, how they stand up for them and in the friends they choose to surround themselves with.

Kindness starts at home.

It starts with me. I know I have fallen short at times, but I do my hardest to remember the lessons I’ve impressed upon my kids and walk the walk. I’ve give the grace to others that I wish to see and I find myself drawn to like minded others.

This week I connected with an amazing mama who I am so excited to get to know better. We met at a park and the time flew as we chatted about everything– our husbands, kids, families, favorite pediatricians, common therapists and experiences. It was awesome and I am excited to see how we can use our voices and platforms for good.

We live in a world that seems to put a kindness in the column labeled weakness.

I completely reject that notion– you can be kind and not be a doormat. Take a scroll through social media comment sections and you’ll see what I am talking about. I experienced some of it firsthand last month while sharing our story during World Autism Month. It’s disheartening, really.

But, here’s the thing. Kindness isn’t weakness. Kindness doesn’t go out of fashion. Kindness is free. It is up to us to speak up and speak out to make this world a better place and leave things better than we found them.

It starts with you and me.

It starts in our homes.

So, let’s raise them kind as we raise them up.

Lindsay Althaus of The Althaus Life Toledo Moms Jūpmode

Parenting, Special Needs

“He’s Not Heavy. He’s My Brother.”

The sibling bond is a special one. I have three brothers and as I have gotten older I realize one of the greatest gifts my parents ever gave me was my siblings.

There is something reassuring about having someone who really knows where you came from and stood shoulder to shoulder facing the world with you when all roads pointed home.

When my husband and I began discussing children– how many to have, how far to space them, etc., I knew I wanted more than one and not that far apart. I wanted to give my children a guaranteed someone to walk this world with them once I am gone. We decided on three kids all three years apart.

Want to hear God laugh? Make a plan.

We ended up with four kids– three of them spaced three years apart from each other with our youngest coming 18 months after his older brother. He’s the greatest surprise of my life and God knew we needed him.

So, we ended up with two girls and two boys. The girls are older than the boys. The boys have Autism and the girls do not.

My oldest daughter, Emma, is ten and almost eight years older than her brothers.

She loves them and she understands what Autism is. She gets how it affects the boys and how it effects our family dynamics.

Sometimes I worry that because of her age and maturity she’s too perceptive and carries some of my worries with her. She’s seen my tears and heard tough conversations between her father and me about resources and funding.

Emma would do just about anything for her brothers except maybe she wouldn’t share video game screen time.

Lily Ruth is our second born and our rainbow baby– both literally and figuratively.

Lily came after a loss. She was an answer to a prayer. She’s also a walking talking rainbow. No, seriously. She loves to dress in bright happy colors and she spreads that joy– well most of the time, just not when it’s time to get up for school.

Lily is seven. She doesn’t quite grasp what Autism is. She’s obviously familiar with the word and she’s well aware that her brothers are different, but I wouldn’t go as far as to say she truly gets it at this point in her life.

Lily is quite honestly her brothers’ best friend. She loves them fiercely and is their biggest protector. She meets them at their level and they welcome her there.

She’s a much better big sister than I was at her age to my younger brothers.

I hope that my children will remain close as they travel this life.

I know as my children grow their bond will grow and change. They may not always be as close as they are now and that would be okay. I just hope wherever life takes them they know the roads that lead them back together.

I won’t always be here to look after my babies. Time on this Earth isn’t guaranteed. This is our temporary home. That’s just a reality for all of us.

But for a special needs parent, it is an exceptionally scary reality.

It is a reality that puts me into a cold sweat at 3am when I lay awake thinking of it. Who will be there for my boys when I can’t? Who will fight for them? Advocate for them? Cheer them on?

Spoiler alert: My girls will– their sisters will.

All siblings are special and their bonds should be celebrated. But, the bond of a special needs sibling is like no other. It is simple and patient and kind.

That’s why God (and my husband and I) gave our children siblings. They will always have someone to stand shoulder to shoulder with and face this world.

Photo by PS Photography
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