Autism Perceived

Today we went to Target. We make an effort to go out on the weekends to get the kids out of the house and take the opportunity to teach both of them how to navigate the world. Sometimes it almost feels like normal, other times my husband, Isaac, and I come out exhausted for the rest of the day.

Today was somewhere in between. My 7 year old son, Jesse, is autistic and he’s had an amazing leap in development lately. He has had a burst in spontaneous language and appropriate scripting (mimicking someone else he’s heard in real life or on TV). Still not at a seven year old level but that’s okay progress is progress.

The thing is whenever he has a leap like this it seems to come with an uptick in meltdowns and aggression. Before and during the leap. Last week, he had a huge meltdown in front of his school, but today was different. He was on edge. No one big explosion but many little ones.

He was excited to be at Target but wanted to go and only see exactly what he wanted. Today that was video games, the mirror in the men’s clothing section and for some reason the women’s pajamas section. The problem is if Jesse’s in a section, he takes over the section; running, touching, jumping and bumping into other shoppers. We let him wander each for a short time but gave limits. We needed certain things and other people wanted to be able to shop in those areas.

As we tried to steer him away from the women’s pajama sets. He began to scream and yell “I don’t want to go” at us. Fellow shoppers watched as he went from an overactive boy running back and forth to a screaming, yelling and crying boy.

I used to stop to look around before but I don’t anymore. Why? It’s always the same looks of judgment and disapproval. I will say sometimes there are looks of sympathy or very rarely that one woman who continues with whatever she’s doing not even batting an eyelash. I like her.

I walked away with my daughter and as my husband was taking care of Jesse. Sometimes giving him less attention helps. He calmed and moved on until the next one.

Later, Jesse and I ended up in the boys clothing section. He did not want to be there but I needed to get him a jacket. He hid in the clothes and tried to run off. I tried to get him to look at the shirts that had fun characters on them. He wanted nothing to do with them.

A mom and her son, Jesse’s age, were walking through. She was asking him what size he prefers and if he liked this or that. They laughed and talked about some practice he had just come from. I couldn’t help but notice as she would glance at us every so often. She did not approve of the way Jesse was behaving and clearly thought less of me for pretty much begging my child to just stay with me for another minute. I gave her a quick look that said “I can see you watching” and she moved on. I’m sure in assurance of her amazing parenting. Good for you sis.

The whole trip made me think about the perception of autism. Each person with autism is so different. I think that’s why many people cannot recognize it or understand it. There’s no distinct look to it. No two autistic people are the same.

I can’t even really give Jesse a label or function, because nothing sums him up. Like any person he is a spectrum on his own. This makes it hard to explain to him in any one way that others will understand, but that’s also what I love about him.

I just hate seeing the way people see him in these short encounters in the world outside of our bubble.

I know exactly how Jesse is usually perceived.

He is perceived as a brat. Isaac and I are perceived as bad parents. When Jesse was younger it wasn’t as bad, but the older he gets the more the sympanthly goes away.

Jesse is the way he is because he is autistic.

Jesse can speak, but cannot communicate like a typical seven year old. His speech is mostly scripts, mimicking us and familiar terms he uses over and over. He can grow frustrated not being able to express himself. His voice does sound like any other little boy. If you were walking by and heard him you would have no idea of the language delay.

Jesse regulates by moving. He does not hold still well, especially out in public or when he is excited or anxious. He’s hands are always twisting around or touching things. We tried to find spaces for him to move around, but you will never find the kid holding still.

Jesse is a sensory seeker. He has to touch everything but lacks the understanding of why he can’t. He LOVES to lay on the floor. We remind him it isn’t always okay to touch everything, but something in him cannot resist. Gross public floors are a no for me. Out and about I’ll see him plop down out of the corner of my eye and I’ll say “nope, we don’t lay on the dirty floor” and usually he’ll jump right up.

Jesse likes Star Wars and Legos, but loves Peppa Pig, Sunny Bunnies and Word Party the most. Shows made for toddlers. He’s often singing their songs or acting out an episode. Sometimes he gets the whole family involved. We love joining in his world.

Jesse has a hard time interacting with peers. He probably won’t respond to a stranger’s question. Even when we run into kids from school. If they come up and say hi he might just laugh or try to touch their face, he’ll usually just ignores them.

He does not understand personal space. If he’s determined to get somewhere he may attempt to walk right through you. I do try to navigate him around people and apologize when he walks into someone.

Jesse can follow two step directions on a good day. That’s why you’ll see us repeating things to him or reminding him of what he is doing.

He is also just our son. We don’t let him get away with screaming at Target but we have to go about calming him in a different way. We stick by his side and guide him through the world. We aren’t treating him like a toddler, we are teaching him and protecting him.

In our home Jesse isn’t disabled. We create a space for him. Yes, we deal with meltdowns, we help with life skills and take safety precautions, but we know no different. It’s our life.

It’s the outside world we have to worry about. That’s where he isn’t able to do things on his own or get the help he needs.

I write this, like I do everything about Jesse, to spread awareness. If you see someone like Jesse out in public. Maybe give a kind smile or just not stare. Maybe explain to your kids why someone may be acting that way. Maybe just be the love and acceptance we all need.

Be the love.

A Moment of Reflection On Parenting and Autism

A few weeks ago Isaac and I went to San Diego for a quick weekend trip. We’ve had nights away here and there but had not been on a trip alone since having kids. As a parent it’s hard leaving your kids but it’s always nice to take a breath of air.  Even better to do it with your best friend. 

As he and I walked, bag, stroller and child free through Balboa park we came across The Museum of Us. Drawn in by the building’s beautiful architecture, we peeked inside to see a stunning display of totem poles. Having the jarring freedom to do whatever we wanted, without the fear of it being too loud, or us being too loud, or meltdowns, or lack of food options, we went inside and just bought tickets (I know that sounds pretty normal, but quite the treat for us).

Museum of Us San Diego, CA

If you haven’t been there, I highly recommend it. I’m a museum lover and this one hit the spot.  I loved walking the halls reading all the aimless information I could take in. I feel like I never have time to learn anymore unless it is directly related to parenting, autism, or a hobby I specifically seek out and carve out  the time for. It was nice to just be, and to explore.

Then I came across the PostSecret exhibit. It was created by a man name Frank Warren who, after working suicide hotlines and hearing strangers’ deepest secrets, began a project where he invited people to send him their secrets on homemade post cards. 

I had seen the book years ago and was instantly intrigued again. Who doesn’t want to read other people’s secrets?

As I roamed the exhibit, I read the postcards all displayed in different ways; on clipboards,  framed, pinned, shielded in clear plastics, stacked like records, etc. I had a range of emotions. Some were incredibly simple, “I wish it was my birthday all year” . A lot were funny and sweet; “I throw pennies at cars that don’t use their blinker”. Many were sad; deep confessions of things people could never speak out loud, “I write suicide notes to convince myself to keeping living.” They all pierced my heart. They all felt sacred. 

One of the walls of the exhibit had painted wooden boxes with doors. Each door had its own secret. As I worked my way down I opened one and immediately caught a glimpse of the all too familiar puzzle pieces. You know the colorful connected shapes that scream autism. I knew I would feel this one.

The card read “I’m dedicating my life to Autism Research, but I know I’ll never be able to cure my brother.” I froze. I felt my mind zoom back into my real life. Where I am a mom to an autistic child. To where I worry and overthink. My moment of escape, gone.

Museum of Us, PostSecret Exhibit Frank Warren Artist, Unknown.

We don’t speak of a cure anymore. Really right around the time autism entered my life organizations like Autism and TACA were dropping the word “cure” from their names, the advocacy generally moving toward awareness and acceptance. I have watched parents lose themselves chasing that cure. I’m so grateful we never went down that path. 

I did not judge though. This was likely older and I get it. You want to help someone you love and a cure sounds like an attainable solution. The reality is a cure isn’t needed nor can one exist.

As I stared at those words, I wondered about this person. I wondered where they were and if they’ve changed. I thought about their brother. Could he speak? Does he hurt himself? Did the world crush him? I thought of all the reasons this sibling wanted to help him. 

And went as far as to dedicate their life to curing him.

It made me reflect on my own journey. How when my son was diagnosed, we were told the actions to immediately take to help him, to possibly fix him. How in the beginning my heart was broken, my fears were fulfilled and I felt like I could never measure up to be his mom. How I too had to dedicate my life to some yet unknown solution.

In the end, that solution had nothing to do with him. There is no fixing my beautiful boy. It was me who needed to change. To accept. 

I hoped the person who wrote that card found that out also. That they weren’t chasing a cure anymore. That their goal became fixing the world to love their brother instead of fixing him to fit into it. 

As I walked the rest of the museum my mind remained there, standing in front of that postcard, reflecting on where I was on this journey.  Autism isn’t easy. Life will never be easy for my son, but as a mother I want it to be easy in the most simple ways. I wish he did not have to fear the world; I want him to be able to relax and enjoy it without having to worry about it being too loud or bright. I do not want people to take advantage of him or be mean to him. That’s just me being a mom, but my son is who he is.

Instead of searching for a nonexistent cure, I write and talk about who he is, to spread awareness that hopefully begets acceptance for him and others like him. I help my son manage his emotions and figure out how to self regulate, whether or not that looks strange to others. The best thing I did was to join my son’s magnificent world. I have learned, and continue to learn, so much there.

I’m grateful we had that trip and I had that moment in front of that postcard. As I took that time to swim to the top of the parenting pool and take a breath of fresh air, I was able to see the progress; to see how far I had personally come as a mom to an autistic child and as a human in general. 

The Day She Realizes Her Brother Is Autistic

Somedays I wonder about the day she’ll realize how different their relationship is.

Realize most little sisters didn’t speak for their almost 7 year old brothers, or explain things to them, at only 3 years old.

Realize her friends did not usually make sure someone was holding their older sibling’s hand, when crossing the street.

Realize not all sisters rushed to tell their brothers to take a deep breath or that it would be okay, when they were having a meltdown.

Realize the number of times she was quickly handed off to a family member, while mom or dad had to attend to her brother.

Realize how often she had to leave somewhere early because it was too hard for her brother.

In some ways I fear that day. Will she resent us? Or worse, him?

I hope not.

When that day comes I hope she can see how amazing that she was and is.

That she knows no one ever asked her to do those things, she just did and that is astounding.

When it all becomes too much, I pray she knows that while she is a defender of and a comforter for her brother – that she is just as important and just as loved.

I hope she sees the road she’s traveling isn’t easy for either of them, but they will both be better people because they have each other.

This Holiday Season I See You, My Autistic Son

The snow, the decorations, the family. I know you love it all with every fiber of your being. 

Sometimes, as I explain to others how hard the holidays are for you, I listen to my own words and I know that it sounds like you can’t stand this time of year. But that couldn’t be further from the truth. 

You love it. You love it so much that it engulfs you. It becomes too much. 

You need the ever constant rhythm of your life and you want to step outside of it to celebrate, but it’s hard.  

You want to be around everyone for the big dinners and the fun but you hide from them. But don’t worry, if you want I’ll hide with you. Laying you down and rubbing your back on someone else’s bed has become our own little tradition.

You love seeing the wrapped gifts under the tree but can’t understand why we have to unwrap them. 

That’s okay. I can hear it now; I can hear the higher volume of each voice as it claws over the others, I can hear the wrapping paper tear and several people calling your name. It’s so confusing and loud.

And I can feel it too; How the pressure of everyone watching you open gifts is suffocating, how you can’t understand that people expect you to react to each item, and then how it almost becomes a competition to win your smile.   

So I sit with you in the corner. One on one. Creating our own bubble amongst the mayhem. 

But throughout the season I see all the things you love so much;

Like the Snow. 

When we get that first heavy snow with the big flakes, you and I go stand outside and watch them fall. We stare up and watch as each one of them hits our faces. You jump for joy and then become completely relaxed. A calm I rarely see. A peace of sorts. It’s your heaven on earth. 

And then the decorations.

You love decorations, especially the big tacky ones I can’t stand. You know where all the inflatables are in the neighborhood. I’ve even gone against every fiber of my being and put them in our yard. You stare out the window and look at all the beautiful lights on people’s houses. Wherever we go we search out the lights and decorations. My favorite way to see them is in the reflection of your eyes, where they sit content, and I know that equals joy.

Then being with family.

I know they can’t tell, but you love having your family together. In your logical mind it’s a must. We see family on the holidays. You love seeing everyone else’s excitement.  You come to me to point out who’s there, whether or not you dare to greet most of them. You hide in your room and run out every so often to check who’s there. When you and I go back alone I can see you stimming and smiling. So happy people are there enjoying the holiday.

As you grow, I want to thank you for trying. Trying for me. Trying for us. I see you come out more often. I see you playing with cousins for as long as you can.
 

I see you stay the whole time during the gift opening because you know I want to be there to watch your sister. I see you have a hard time at night. The long day reels through your mind. As you script and loop. I know you don’t just do it for me or anyone else. I know you want to be there and it takes every fiber of your being.

Just know you are never on your own. I see it all. I see you and I am always watching to help you through it all.

As I help you through, I want to thank you for helping me too. Helping me see the holidays so differently. Helping me see that all the decorations are beautiful. Helping me find the peace in the snow. Helping see that it’s fun just to lay underneath the tree and look up at all the lights and all the branches. To help me feel and appreciate every ornament. To sit in the dark by the tree and watch a train go around and around. 

To take a step back and see the beauty in all the small things. To see that holidays are made up of a million little things and to take it in, one piece at a time. 

Thank you.

Something for The Unseen Mom

Disclosure: This is a partnership with, and has been compensated, by The Pampered Parent, LLC. All opinions are mine alone.

Through our journey into the autism world over the past few years, I have met some incredible moms. Not only moms of autistic children but a myriad of disabilities. No matter who they are or where they come from, I find an instant camaraderie with them. Some of them have struggles we don’t, and have been tested in ways I couldn’t imagine, but there’s always a basis of understanding.

In these moments, I often find a commonality with these amazing women. They feel unseen. Parents are often told what our kid wants or needs and criticized for not knowing all the facts we’ve never been given. It’s like running on a treadmill while juggling everything and then getting told you’re doing great but all wrong.

I am so grateful for every therapist, teacher and caseworker who has worked with us and my son over the past few years. My son is only six years old and there have been many people in and out of our lives, but I will say that every so often you find an extra amazing gem. Someone who sees your child as an individual, someone who sees how hard we as the parents are trying. 

This is why I love the Pampered Parent. It was started by a Board Certified Behavior Analyst who truly saw the parents and how much they do. Their website says, “These parents do it all. They go from work to the grocery store to taking their child to and from therapy, getting home just in time for bed. They tend to take care of everyone else, often putting themselves last.”

  The Pampered Parent is a subscription box for mothers of special needs children. A little something just for them. Each box includes fun and motivational items; like a shirt, tote or tumbler. And my favorite part is the inclusion of at least one item from a special needs run company, or a company that employs special needs individuals.

Another amazing part of The Pampered Parent is that they see the need to support special needs adults in our society. The founder, Lindsey, writes, 

“My ultimate goal is to provide employment opportunities to individuals with special needs.”

As the parent of a special needs child, who I hope someday can have a job, companies like The Pampered Parent give me hope. Hope for a happy and fulfilling future for my son. 

This is why the podcast I co-host, Table for Five No Reservations, specifically reached out to The Pampered Parent. This is an amazing company that we are proud to support and so excited to spread the news about them.

Check them out at thepamperedparent.com

Use code TABLEFORFIVE for 15% off your order. 

Like my Son, I was an IEP Kid

Today I cried on the way home from dropping my six year old son off at his autism therapy center. Last week, we found out that his morning therapist would be replaced.

We love her. She’s been Johnny’s therapist since we started there almost a year ago. Over the past year they have developed a beautiful bound. Johnny will run up and hug her the moment he sees her.

The sadness really hit me today, as he started with a new therapist. Once we entered, Johnny immediately looked out the window searching for his old therapist, with the sweetest look of excited anticipation in his eyes. I explained again that he would still see her around but now he had a new therapist. I could tell he did not fully understand. That look out the window just about broke my heart.

They do this every so often, switching therapists to make sure he is able to grow with different people, and also because there is a high turnover rate. I understand the process and as much as I loved this therapist, I realize it is probably (hopefully) for his good.

The part that truly makes me sad, is how at the age of six my son has already had so many different teachers, therapists and doctors. He has already been through many evaluations and observations. In the fall we will reenter the public school system and be given a new IEP and yet another new team of helpers.

Of course we are forever grateful for all these helpers. He needs the help and we want that for him, but it’s also a lot for a little kid.

I know because I was an IEP kid. I was on an IEP for a reading and writing disability until the 7th grade.

I remember being pulled out of class, for special education class, everyday in elementary school.

I recall groups of adults meeting about me. Sometimes with me, sometimes without – and sometimes talking about me right in front of me, like I wasn’t even there.

I was often being watched and evaluated by teachers and therapists, who I barely knew. And sometimes by adults that I didn’t know at all.

I often felt the expectation to show them everything I knew in that short amount of time. The pressure and my shyness did not often allow for it. I felt like I was missing out on what the rest of my class was doing while me and a few others were away from the room.

I will say I was very fortunate, that I was rarely bullied for not being as smart as everyone else. I would have teachers and therapists try different things in the regular classroom: writing boards, different pencil grips, little typing computers and devices. Other kids always said it was so cool that I got to try those things.

But I honestly don’t know if it was said out of pity or genuine kindness and intrigue. Maybe they felt bad seeing me constantly watched, often right over my shoulder. Maybe they thought nothing of it. I am so grateful for all the help I received.

I remember the day I was called out of class and entered a room in my middle school, one that I didn’t even know existed. As I entered I was surprised to see my parents, all my teachers and a few strangers.

I had no idea this meeting was taking place. Smiles filled the room as I walked in, but I felt very uncomfortable. All I could think was “why is this happening?” “Why is it me and all of these adults?” “How long have they been talking about me?” I’m sure it was said but I don’t remember anyone saying that it was an IEP meeting. It was my last IEP meeting.

I had made it.

I had achieved just average.The IEP wasn’t the end of it. I was in remedial english classes through the 9th grade, until once again in 10th grade I was put into the regular ol’ english class.

I clearly remember those moments because it felt so good to be average. I needed nothing more than to just be good enough for regular. To not stick out in a “bad” way. I do want to say I am unbelievably grateful for all those who helped and taught me throughout my education.

I remember my elementary special ed teacher the most of any teacher I had, because she saw me for me. On the other hand It would be a complete lie if I said I was not still affected by all of it.

The “Individualized” part of an IEP is amazing, but it can also be isolating. I was always being talked about. I know it probably wasn’t true, but I always felt like a problem. I was a problem dozens of grown ups were trying to solve.

I think about all of this with my son. He has so much more to deal with than I ever did. He always has a team of people in and out while his peers have one main teacher each year.He is always being watched and even I am guilty of talking about him as if he can not hear.

I don’t want him to ever think he is not good enough because he needs more help. Still to this day my disability is part of me. I am proud of how far I have come, but at the same time I feel like I never caught up. It’s an insecurity that I do not think I’ll ever overcome.

If anyone ever tells me I am good at anything involving reading or writing, I’m shocked. All my endeavors are to be good enough to be average. I will never feel like one of the smartest people in the room.

I think one of the hardest parts of Johnny’s diagnosis was feeling like it was my fault. Not only did I pass on my learning disabilities but I know that my child will likely always feel this way. The way I feel and felt as an IEP kid.

I don’t want to project all my feelings onto my son. He is an individual. He may not care. He may find a greater fight in himself to achieve greatness. I just hope I can do everything possible to ensure that he does feel like any less of a person and make good decisions for him.

Today my heart is sad that Johnny has a new therapist. Part of me wants to trust the system and know this will be good for him. The other part of me questioned just about everything, as I watched my son walk off with his new therapist and then cried my way home.

I’ll Sit With You In The Dark

It was 3 am. White noise screamed in my ears. Besides the small glaring red light of a baby monitor I was engulfed in darkness.

My body was so tired my bones ached. All this as I held onto a small tiny human praying for him to sleep.

The five hours before I had been in and out of 20 to 45 minute chunks of sleep, on the nursery floor, in the rocking chair, or my bed, always just long enough for it to be painful to wake to the cries and I would will my body to get up again. I’d just wonder why my 6 month old baby hated everything at night; sleep, his bed and possibly even me. 

I was on the edge. The days I would recoup, but when night came the dark crept in.

Five months old.

We were past the newborn stage, I had read so many sleep training books and had tried it all. Breastfeeding was a struggle so I couldn’t even rely on it.

I was six months into parenting and already failing. My only hope was that it wouldn’t last forever. I held onto everyone’s words “he will eventually sleep”.

I was so tired.

The thing is that the sleepless nights continued, for weeks, then months, and then years. Although, he always would sleep just enough that it wasn’t as much of a concern to others, but then other things were getting harder. There was lack of communication, meltdowns, harm, self harm, and silence. I was so lost.

Happy moments were in-between the hard. Beautiful and happy moments that I treasured and still do. He found his love for water, music and tickles. He was a sweet and amazing boy. Some days there were things I couldn’t understand; a slow progress and lack of adjustment to everything. 

The typical didn’t come. I had been around children my whole life, and cared for many. I would think “why am I such a bad mother, I should be good at this”. The nights continued to be a dark a lonely place. Even as my husband helped, I would sit in the next room and cry. 

The days home alone with my toddler were lonely too. I would lose my cool and than hate myself for it.

We couldn’t live the life I thought we’d live. We couldn’t go many places and when we did, all I could do was assess the differences between us and everyone else. No one really seemed to understand, which made it all the more lonely. 

Now time has passed and we’re in a much better place. Sleep is not perfect but much improved, communication has grown, and most importantly I understand and know why my child is the way he is. He takes in the world differently, he thinks differently than me, but my goodness it can still be really hard.

Now the progress and behaviors come in waves and many times I pray alone for calm and patience. 

Sitting outside a restaurant while everyone else eats.

The greatest resource I have now is other moms in my life who travel a similar path. This last year I’ve met amazing women. With them, I can just say we had a hard night or day and they automatically understand.

These are people I probably wouldn’t know or relate to in many other ways but are now my best friends, my hope, my shoulder to cry on.  I have friends who I know are a phone call away. Some whom I listen to chat away in my ear buds while I sit alone, in the dark, willing a six year old boy to fall asleep. 

If you’re a parent of a special needs child and you find yourself in the dark literally or figuratively, know I that I understand you. Know you can reach out. I’ll cry with you. I’ll listen to you. “I’ll sit with you in the dark.” If not me, find someone who will. It will save you.

You and Me, Kid

To my Johnny,

I can see it now; The chaos, the fear, the love, the moment you entered the world.

It was 10:31pm and the room was full. Nurses and staff running about, Dad, Grammy and your Aunt Shauna cheering with joy, machines beeping and a baby crying.

In a strangely unceremonious way you were laid down on my chest facing away from me, curled up in the only position you had ever known. I remember trying to ask if I could see your face and it going unheard. I felt like we were the center of attention but ignored all at the same time.

In a way you were a stranger to me, but also part of me. A bizarre feeling. I remember, more than anything, feeling for you and wanting to protect you but afraid of doing something wrong. You were so small and fragile, I almost wanted to panic.

I was now responsible for another life, for a whole human being. The previous worries about the right name, crib, location, etc all seemed silly and rightfully trivial. 

Almost exactly 24 hours later, late at night. You and I sat in a different hospital bed and dad was asleep on the other side of the small room. I had just finished nursing you and you were wide awake. This was the moment. You and I one on one for the first time, the moment I fell in love.

It sounds cheesy and made up, but I swear in that very moment while staring at each other it began to snow. I have always loved the snow, especially at night. As I turned my head and watched it gently fall past the parking lot lights, I felt the most beautiful feeling of peace and love. It sealed the deal that you were mine and I was yours, for the long haul. 

Now here we are at six. So much has changed. You are your own person and I am your person.  The element of autism has defined our life. It’s a part of you. It makes you beautifully unique, but also so much more complicated.

Some days I feel like it comes between us and other days it strengthens our bond. The thing about you being autistic is that it’s changed everything about what I thought parenting would be. It’s changed me for the better and more importantly you’ve made me better. 

We have meltdowns, speech barriers and delays. Our world has become evaluations, IEP meetings, explanations and appointments. So many appointments.

I constantly worry for you. Worry you will get hurt, lost, bullied or scared. I worry most about your future.

I’m so scared for what’s to come in your life. Some days I feel like we’ve walked through fire and I want to give up and scream “why?!”. There are times I actually do… but each time I learn. I learn more about you and how to help. I see you and how much harder life is for you than other kids. I know how hard you fight. 

I love you more than I ever knew I could. When you laid on my chest as a brand new baby, I felt unworthy. I couldn’t immediately connect and it wasn’t how I had imagined. It took a little bit of time just like everything else in our life.

All these years later, at the end of a meltdown, a hard day, a day full of no’s and can’ts, I know you and I can take it back to one. You and me kid.

I hold you in my arms and we look into each other’s eyes. Then I remember the promise I made that snowy day in a hospital bed to the one day old baby I just fell in love with. You are mine and I am yours, forever. 

I love you.

-Mom

Worry vs Wonder

Oh to wonder. I miss it.

It’s a little over a year since my six year old son, Johnny, was diagnosed with autism and I can’t even imagine wondering about his future.

From the beginning of pregnancy up until age two I wondered a lot. Who’d he be, where life would take, everything a parent does. At two, the word autism was first brought up in association with him and it stifled my ability to wonder about the future, and now I live in the realm of worry.

When diagnosis was official and I would open up to friends with typical children about my worries about Johnny with bullying, friendships, puberty, etc I would often hear something like “I worry about that for my child too”. They always said it with kind intentions, but it stung. Yes, they do have those worries, but they also get to wonder about so many things to come.

They get to wonder about who their child’s friends will be. I worry my child will never know true friendship.

They get to wonder about how they will discuss bullies with their child. I worry my child will never be able to tell he’s being bullied.

They get to wonder about handling puberty. I worry that puberty will break us.

They get to wonder about their child being old enough to drive. I worry my child will never get to do things like drive.

They get to wonder about their child dating and going to prom and other events. I worry my child will never find a partner in life.

They get to wonder about college and jobs. I worry everyday about what resources my son will have after high school.

They get to wonder about their child’s first home. I worry if something happens to me, mine will end up in a group home.

They get to wonder about grandchildren and what’s to come. I worry about finding a way to financially support my son for his entire life.

As we grow I know the wonder will come. It won’t be the same as parents with typical children, but we will get to wonder. For now I live in the present because the future is too much to bear. For now I’ll hope for wonder.

Football and Half an Apple

By Isaac J. Ramos

I love football. I don’t remember ever not loving football. I can’t tell you when that love started because it has always been part of my life.  Growing up, Sundays consisted of going to church, making a great Sunday dinner, getting together with family and watching the Denver Broncos. One of my favorite memories of my Dad is running back and forth throughout the house while he threw me passes.

  My love for football has grown and changed over the years. Like any dad, I hope that I can share my passions with my children. I pray that they may have some interest and engagement with the things I love. I’ve been lucky in that my children have engaged with some things I love, like star wars, pasta and giving my wife, Jaime, a hard time.  

Hollywood Studios 2019

Interest and engagement with Johnny is always at the extreme. There are times when he loves something and the next day he might have only a passing interest in it. I have tried playing catch, which he will do for a small period and time. We have played “tackle football” but it mostly just turns into him jumping on me instead of running with the ball.

Most Sundays, Johnny will attempt to watch TV with me, realize I’m watching football, and move on to other things he enjoys more. If I had to guess, I don’t think this experience would be different for any other kid in his age range.  However, there have been multiple times this year where he has actively watched a game with me. It tends to work best when combined with one of his passions…apples.

Alright, maybe passion is too strong of a word but this kid does love apples. He eats at least one a day and there are plenty of days where he will eat 3-4 if we let him.  However, there are a lot of times where all he eats is half an apple. I did not realize that one of the great “joys” of being Johnny’s dad would be discovering all the places where I might find half an apple.  Oh look, I just found a half-eaten apple in the couch, under the bed, and in my sock drawer? Sometimes I laugh and other times I just shake my head. The joys of parenting.

On a couple of occasions during football season, Johnny would come sit on my lap and eat his apple. I would hear the crunch of the apple as he began to dig in. He would watch the game as he munched away. He might laugh when there is a big hit or start running around the house after a big play. It is hard to tell if he is just stimming or if he is trying to mimic what he just saw. Either way, it doesn’t matter because for that brief moment I get to share my love of football with Johnny. Even if it means I have to pick up the half eaten apple he just dropped.