Support, Love, Friendship

Being a parent to an autistic child can be lonely and isolating. When I’m somewhere with Johnny, all my attention is on him. Off in a corner just him and I. Even when I’m in social situations on my own, it’s lonely because most people cannot relate. Or maybe it’s because I can’t relate. My outlook on life is so different. My days are filled with worrying about someone else in almost every way. 

My first experience with special needs parents was at an early intervention therapy, day camp for Johnny. All the parents could take classes and meet up while the kids were in their camp groups. I felt so awkward at first. I was the only parent with an autistic child attending the class. All the other parents had children with different abilities. Some had kids with major physical disabilities or very rare conditions. I didn’t think I could relate to them or fit in, but by the end of the week I loved them all. 

Even though our kids were all different from each other, they all significantly changed our lives. They changed how we all saw the world and the world saw us. It’s an amazing bond.

That day camp experience made me realize that talking to someone and being able to truly voice both the good and the bad was amazing.

I realized after the camp that I was already part of an amazing resource. One full of mom’s that understand my life, Coop’s Troop. 

I started following Finding Cooper’s Voice years ago and then joined her supporter page shortly after it started. As the page grew it became a community.

Some days I looked and others I didn’t. I was in denial at times. Johnny hadn’t been officially diagnosed at that time, and I still had this weird hope that it was not autism.  Reading posts from all these other moms, who were deep in it, made me uncomfortable. Most seemed to be fully in the special needs world, while I was busy trying to claw my way back to the typical world. 

Every once in a while though I’d get on and see something that sounded a lot like my Johnny. I could relate, I could vent, I could see myself in these moms.

I think being part of that group was what really woke me up. It was okay that our life was going to be different. Others had done it and were doing. When covid hit, moms starting meeting face to face on Zoom. It took me a while but I eventually started popping on. It was life changing. 

Now I remember when I first saw the term “Mom Tribe”, it made me cringe. It made me think of clicks and squads. It felt like people kissing up to each other or craving popularity, like they were back in high school. I know, I sound like a real gem. 

With that being said, I must admit that I’ve found my mom tribe. Moms from all over who understand. Women who I may have never been friends with before, but who I relate to on a whole different level now.

Some are my past and some are my future. Sometimes I guide them, but they mostly guide me. Some have it harder in some areas and easier in others, but we all get it. 

Finding people who understand potty training, sleep deprivation, the loneliness, the sadness, the wins, the regressions, the damn paper work, just the ASD parent life, is everything. 

To any mom or dad out there who is tired, lonely, and scared, you are not alone. Not too long ago my mindset was that I didn’t even have the time to make friends, or keep friends. Little did I know, that there were plenty of women out there who would make the time for me and it’d be worth it.

Find someone. You are not alone. 

Before We Knew

Pictures, pictures, and more pictures. I’ve been taking pictures since I was nine and my parents bought me a camera for my birthday. This was before smartphones and the craze of capturing every moment.

I love it. 

Sometimes after the exhausting bedtime routine I lay in bed and stare at pictures of my kids. Yes, the kids that I’m constantly with, the ones I just prayed would fall asleep and leave me alone.

Suddenly in the quiet and dark of my room, I miss them.

When I look at baby pictures of Johnny it’s a conflicting feeling that pulls at my heart.

I think about how cute and little he was, how I miss having a little baby, but it also feels like another time. The time before knowing something was different. Before knowing autism.

Back then there was so much hope. So many possibilities.

Life seemed so much more certain and typical. I feel like that now our whole world has shrunk in so many ways. Less people, less space, less certainty.

These pictures remind me of a simpler time, before I realized that those fussy nights would continue so much longer than they told us. Before he went from responding to his name some of the time to never responding. That the couple of words he had would come and go. Our world would become a constant back and forth of progression and regression. Back then I had no clue I’d be filling out hundreds of professional forms that refer to my child’s behavior as “odd” and “strange”.

I had no expectation of myself crying on the way home from soccer practice, nursery, and family events because my child would not participate. Sometimes he would scream and cry or hide in a corner the entire time.

I didn’t know the plans we had to do every sport and activity would turn into therapies and explanations. Explanations of him, us, autism. 

Although, now that we are slowly turning the corner of acceptance I see more.

I can see that before I did not know how much I would learn. How it would make us better parents and people. I would have never known how different I would become. My patience, love, and acceptance of others has grown tenfold. All thanks to Johnny.

I did not know that our wins in life would mean little to others but the world to us. The first time Johnny said “Hi mom” so casually at four, I cried. The first time he jumped with joy about something, my heart burst. The day he finally got potty trained I felt the most relief I probably ever will. His smile could change the world. 

Before autism I did know how much larger my heart would become and how full it could be. 

Most days are hard. There are meltdowns, frustrations, isolation, worry, and confusion. Then there are moments of amazing. The moments that keep us going. The little wins carry us through the weeks and months. Before autism I did not know that was possible.

You Need to Calm Down

Yesterday I decided we needed to get out for one last summer weekend. Take a chance with masks, and take a chance with the world.

Going out is never simple. Johnny’s mood, my mood, his little sister’s mood, are all factors. Johnny is the hardest, he finds the world hard. It’s uncomfortable and unpredictable.

We went to an outdoor mall that has a farmers market in the summer. As always there were ups and downs but it was good. We bought veggies and treats. We wandered and spent time together.

For us it was good, to others we probably looked strange. Always watching J like a hawk. Guiding him, reminding him to be aware, watching for any triggers, and of course, mask watch. Always ready to act. Never relaxed.

For our last stop at the end of the mall we went to the big bookstore. My husband went to get a coffee and I took the kids to the children’s section. I knew right away J would be looking for the train table and I knew because of Covid it wouldn’t be there. I could tell he was looking for it, but he did not get upset. 

Huge win for us.

Both kids picked a couple books, we found Dada and I went to check out.

Of course that all sounds simple, but getting out of the children’s section, getting J to hand me the books to pay for, separating from him to get in line, etc, is all a process. 

At this point things went downhill. I don’t know what exactly caused it. Maybe he was still anxious about no train. Maybe it was because mom was 12 feet away. Maybe it was because he could not immediately leave with his books.  

As I stood in line J began to run and make his noise. This is how he stims, regulates himself to try and deal with whatever is bothering him. I remind my husband with a look to try and calm him, help him find another way to get through the process of mom paying. As dad intervenes, J screams. One loud, high pitched, ear aching scream. 

Then I watch. The eyes around me widen and eyebrows raise. Of course, it’s a scream. It’s shocking. The thing is, some eyes stay big and the judgment begins. People around me are unaware he’s mine and I have to stand there and listen. Listen, as the mom behind me explains to her inquiring child that that boy is not acting properly. Listen, as the eye rolling cashier and the older lady he’s helping discuss my parenting and my child. Listen as my husband speaks to my son and tries to help J and little sister. 

I want to scream too. Not at my kid but at everyone around me.   

I want to say it’s a big deal we even walk into a store now. That my son is autistic and doesn’t understand. 

I want to tell the lady behind me to maybe teach her kid that some kids are different and need kindness and patience from the rest of us.  

I want to slam the books on the counter and tell that cashier and older lady that although my son has some words he can’t tell us why he is anxious. He can’t explain. The words are stuck in his mind and can’t make their way to his mouth. He grows frustrated and screams. 

I want to make a big deal, not give the store my money, leave and never come back.

I don’t. I stay calm. 

I stay calm, because it is a big deal we are there. It is a big deal my son was interested in a book and picked out two of them. It’s a big deal that all he did was scream once at the end of our trip. I stay calm because it will help J stay calm. I stay calm because we’ve been through much worse. 

So I’m not going to ruin it for Johnny. I’m not going to ruin that for us.

Luckily, another register opened up at that time. I paid, grabbed my family, and left. 

So now begrudgingly I now quote Taylor Swift and say to everyone “you need to calm down”. Oh well if one trip to a bookstore is interrupted by a scream, or you have one loud plane ride, or one dinner out is not perfectly peaceful. It’s not your whole life. It’s not your every moment.

You can acknowledge it happened, but maybe do it with some kindness. Maybe give a smile or nod or help. Give the child and parents the benefit of the doubt. Don’t be so predictable. Be kind.

Goodbye Normal

Normal. 

Such a funny thing. 

When I say our life is not, I’ll hear back “Who really is normal?” or “What is normal?”. I get everyone is different but when it comes down it, there is a such thing as normal. In some ways we are normal, but in many ways not and haven’t been even before I knew it.

I never wanted my kids to be like everyone else. I want them to march to the beat of their own drums. Howl at the moon. Sing when they feel like it. Walk around barefoot. Roll down the hills.

Although, now that we’re different, and it’s not by choice I realize there is something to normal. There is ease. There is guidance. There is comfort.

Normal is something I now embarrassingly find myself aching for.  

Last Monday should have been Johnny’s first day of Kindergarten. Like many people we toiled and agonized about what to do about school. 

As I watched everyone else decide between in-person, virtual, homeschool, pods, etc once again the new normal didn’t have room for us. J won’t wear a mask all day, he won’t sit at a computer, I’m not enough to teach him, anyone not trained properly is not enough. 

Johnny’s been going to an autism therapy center with one on one therapist since June. We decided to opt out of kindergarten this year and keep him there.

The week before August 24th I had my husband take Johnny to buy some new clothes and picked a new backpack. J could care less about those things, but that’s what  is supposed to happen, right? I dropped him off at his center like I had been for the last few months. I made him take a picture in front of the office looking building in his new backpack no sign with a grade and a teacher. Then we walked to the door and said goodbye to normal.

 
Goodbye to classrooms.

Goodbye to recess.

Goodbye to birthday party invites.

Goodbye to the PTO and school fundraisers.

Goodbye to the safety of the guidance of the school system.

Goodbye to the security of following the way I knew as a child. The way everyone else knows.

Funny how I never wanted normal, but watching it slip away makes me sad, because now I’m in the unknown.

 

Johnny

My Johnny is sweet.

He is silly.

He is moody.

He is love.

He’s autistic.

He’s the best little boy.


Sometimes, I wish we could just hide from the world. The world is hard for everyone, but my guy has never truly been comfortable in it.

Of course, hiding isn’t an option.

I’ve come to find that all I can do is give my guy the best tools to navigate it, and give others the tools to understand him.

That’s why I am here, to teach the world about my Johnny.

The Water

Johnny has always loved the water.

When he was a newborn he was so fussy. Crying all the time, but as soon as I would put him in the baby bath he would kicked, laugh, and smile. An instant fix until he got out.

He was and is at home in the water.

So comfortable there.

Water is our happy place, but also our scary place.

J is attracted to water. He would walk right into the ocean if he could.

He’s tried.

He’ll stick his face in the water for long periods.

No fear.

He has to be watched at all times.

So funny how the place we have the most smiles, and some of the best memories, can also haunt us.