Johnny’s Spirit

My Belly

I use the word “obsessed” a lot, especially when it comes to my five year old autistic son, Johnny. He gets really into certain toys, songs, and shows. It annoys my husband that I use the word so much. “He’s not obsessed, he just likes it”, and to his credit the interest comes and goes often even though he does fixate for a short time.

The one thing not even my husband can deny is that Johnny is obsessed with my stomach. The kid loves it. It can drive me insane, but something about it fascinates and comforts him. Sometimes it is in a silly, squishing my flab, way; other times it is him resting his usually restless head on it; or hiding his face in it when he is anxious or nervous in public.

I’m sure it stems from the hours of skin to skin as a baby, the comfort of laying on mommy as a toddler, and all the encouragement to touch and love on it when it held his little sister.

The older he gets the more we work on the appropriateness of it. He’s still little, but attempting to lift up my shirt at home or grab my tummy in public isn’t going to work. He has to learn to respect my space and body. The moment I lie down when he’s around he goes straight for it. You will hear “no belly” often, in our home.

The thing is, sometimes I look at my belly in the mirror after the shower and think I feel ashamed of it. My 30’s belly is much different than the almost flat stomach from my 20’s. My workouts come and go, as do my healthy eating habits. I try but I’m also a tired and exhausted mom who has been through many ups and downs.

So, I won’t lie, he’s not catching rock hard abs there, It’s surely a comfortable and soft pillow.

The neat thing is he doesn’t see it as fat, or unhealthy, or shame, he simply sees it as mom, comfort and safety.

No judgment, just love.

My son loves a part of me that I find hard to, and that changes the way I see it. Don’t worry I’m not using it as an excuse to stay unhealthy or out of shape, but it is a reminder of my son’s beautiful acceptance and love.

So when I stand in the mirror looking at that belly, I can say it’s the way it is because I carried two beautiful children in it, and because I’m a special needs mom who has had some really hard days. It’s not perfect because there is not time for perfection in my life right now, maybe there never will be. But I am doing my best and that’s okay.

I’m loved and accepted no matter what, by my son.

Johnny is different. The amazing thing about him is that he does not judge. He doesn’t look for the flaws in others, or make fun of others, instead he seeks. Seeks what makes him happy, and what he loves.

There is something undeniably beautiful in that and I’m grateful for that unconditional love and for someone who truly loves my flaws.

Thankful

Man it’s been a year.

I’m exhausted.

Exactly one year ago we took Johnny in for his autism evaluation. It was nerve wrecking and intimidating.

The next month, five days before Christmas, my husband and I went on date night to see Star Wars. On the drive home, we got a call that Johnny had jumped off the couch and broken his arm.

One week after that we got the official diagnosis, Level Three Severe Autism.

Then 2020 came. Covid. Toilet paper. BLM. Election.

As Thanksgiving approaches, I have a hard time feeling the spirit of gratitude. Can I just skip to Christmas and eat sugar cookies and fudge?

Although, when I really take the time to think about it, I do have so much to be grateful for.

I’m thankful that with an official diagnosis we have been able to get Johnny more help and resources this year. The evaluations, paperwork, and observations are hard and taxing but I’m grateful people and programs are there for my son.

I’m thankful we survived our first, and hopefully only, broken bone this year. Johnny was a champ in the end. No surgery was required and we made it through.

I’m not thankful for Covid, but I am grateful that so far my family has been healthy and safe. That we have been able to lean on each other during this surreal time.

It’s made me really grateful that we have a backyard and wifi.

While the toilet paper jokes get old, how lucky are we to live in a place where that was many people’s first concern? We always had food, water, shelter, and power. I am so grateful for those things.

I’m thankful for the opportunities to learn and grow this year, when it came to social justice. I have been disappointed by a lot of people this year but I’ve been taken aback by the love people have shown one another, as well.

I’m so thankful for my husband helping me through it all. Being there and holding my hand through all the uncertainty. I’m grateful he’s been able to work from home. I love having my best friend and partner around.

I’m thankful for my Johnny. The kid has worked hard this year. He’s completing goal after goal. I’m thankful for his silly spirit and loving heart. I’m grateful that he has been able to adapt to our new world relatively well.

I’m thankful for my daughter. The spunkiest two year old you will ever meet. This girl is so resilient. She loves her brother and already checks on him and makes sure he’s ok when he’s having a hard day. She gives the best hugs and also the best side eye. She’s my light.

So, although this year has probably aged me several years, I can go into this next holiday week grateful for so much. If this year has taught us anything, it’s to be grateful that we are safe and surrounded by loved ones.

Happy Thanksgiving.

Christmas List

Today we made a Christmas list!

It’s something I always did as a child, and always imagined doing with my kids.

Earlier in the day I made some with my daughter and nephew, but didn’t think Johnny would be interested.

When he got home from therapy I gave it as an option to earn TV time and he was all for it. I’m not sure if he understood what it was. I think he agreed because I mentioned .

He sat with me and let me do hand over hand to write the “Dear Santa”. Then we sat and talked about different things he could ask for. He would say no or repeat what I said if he liked it.

We wrote the list switching between him attempting to copy the words I would write on a separate piece of paper and hand over hand.

I’m so proud of him. Outside of doing an amazing job sitting, interacting and writing, I honestly wasn’t sure we’d ever be able to do stuff like this together.

I used to push so hard for him to care about this little stuff. I have learned he’ll do things in his own way and on his own time.

I’m still not sure he fully understands, now he just keeps asking to see Santa, but maybe he did. Either way it’s okay. He’s progressing and more importantly he’s trying.

Hello Darkness

It’s no secret being a mom is hard. I think it once was a secret, but it isn’t any longer. Too many of us blabbing about it on the internet. It’s a different kind of hard than I thought though.

Mothering is a paradoxical life event. An ability I was born with. A biological and worldly life calling I never doubted. It’s a weight though. A heavy life altering load. It changes your identity, It consumes you in every way.

I have two kids. They are my everything. My oldest, Johnny, is five and on the autism spectrum. Something I wasn’t prepared for. I’m consistently trying to learn and grow, but it’s hard. There is no guide book given to the parent of any child, but especially a child with autism. We have a lot of ups and downs.

It’s hard to explain, but we have days, and sometimes weeks, where Johnny is more engaged and aware. He is still autistic and himself but it’s like he’s with us more. He has more gains and wins. I’m not going to lie, it’s easier. It’s the time of hope and pay offs.

Other times my husband and I usually compare with babies “Wonder Weeks”, he’s grumpier, temperamental, and sensitive. These weeks bad behaviors like spitting, screaming, meltdowns, rough nights, etc. become the norm. During these times I feel down and hurt.

The older he gets, the back and forth between these times gets harder.

On the hard days, I try to stay positive but doubt and worry swarm my mind. This week, it’s very hard. It’s hard not to internalize your child yelling at you, hurting you, hurting himself. The worst is how I don’t know how to make it better for him. I don’t know why.

When you have a child you take on the responsibility of a life. It’s your job to raise, protect, and teach them. I’m trying my hardest to do those things but it wears on me. Right now it feels like I’m talking at the wall. Like teaching is off the table. It’s pure protection, planning, and defense.

I need breaks from my child sometimes. Not in the cute hiding in the bathroom eating a candybar way, but in the crying into my pillow wishing I had more endurance and patience. A way that hurts my soul.

I don’t know what I thought motherhood would be. I’ve taken on an enormous task I knew wouldn’t be easy, but I didn’t quite understand the effects.

I don’t feel like my child needs to change or fit, but more like I’m the one that doesn’t fit.

I should be strong and endure. I should be able to do what needs to be done. I should be able to stay calm in the storm. I do those things 90% of the time, but it takes a toll.

Some days it breaks me a little bit. It’s my darkness, but luckily I know it will go. I’ll go for a walk and I will recenter and get back to it, because I’m the mom and I love my kid.

Where were you?

I didn’t know you.

We were always together,

I fed you from my body, then my hands,

I bathed you, I changed you, I’ve always loved you.

But you were somewhere else.

Where were you?

My son Johnny is now five years old. He is autistic. And I feel like I did not really know him for almost the first four years of his life.

Shouldn’t a mother know her child?

I did know him, but in a different way. A way I had to work for.

As a baby Johnny was quiet and kept to himself. He needed me, but never asked for me or reached for me. That cuts deep.

At first, I didn’t notice. He was my first. I thought the connection would come.

A newborn’s world is black and white, but that was supposed to grow. As he grew there was almost no attachment from him. It was there for me, but not for him. I pushed for it. Secretly begged for it.

He would cry and I wouldn’t know why. Gas? Hunger? Pain? There was no signal as to what. Like a mother to newborn I would run around trying to fix everything, but he wasn’t a newborn anymore.

As he grew, if I really engaged and got close I could get smiles. I could tickle and he would laugh, and then nothing. Moments of connection always cut short.

I wondered where he was.

He hated car rides as a baby. He would cry the whole time. Somewhere around 18 months they became so quiet.

No singing or talking. I would point out trees, cars, the sky and was met with silence.

I didn’t know where his mind was. Was he content? Scared? Happy?

He would eat. I would put him at the table and ask what he wanted. At first there was no response and then around three maybe a word. Milk. Water. Apple.

I would have to guess the rest of it.

I would talk to him as if he were talking back. It was lonely.

Every once in a while he’d sing with me. It was everything.

Affection was now there. Especially out in public when he was nervous. At home he became attached to me. He’d follow me everywhere it’s how he showed he needed me. I kind of loved it.

But I thought “Shouldn’t there be more back and forth?”

Then more words came. Not sentences, just two or three words together.

I was so excited.

They weren’t his words though.

He was repeating. Shows, books, movies.

As I learned that wasn’t right, the excitement faded.

I yearned for an answer. An answer to anything I asked.

I wanted to know him.

I became an expert in his noncommunicating. I knew him in a different way. A way through observation.

Watching his face when he watched something. “Was there a quick giggle or a small smile?’’ That means he liked it.

“Is he looking at that same book?” It must be his favorite.

“He didn’t eat those noodles?” He must not like them.

I wished he would tell me though. Words would have been great. Showing me would have been amazing too. I would take any of it. Any communication.

A little after four I started hearing the flow of his voice. Not just singing or a simple word or two. He could name every Star Wars and Harry Potter character. Sometimes scripting (repeating) an entire sentence from a movie or from a teacher or parent. Slowly the scripting became fitting to the situation.

I could say “what time is it?” at dinner and after a few beats he would repeat from his favorite show “time for snack.” Win! Something was clicking. He used words, he knew food was involved, he recognized the word ‘time’ in my question.

He started to point and show us more and more things, if it was something he wanted.

Once again, I was so happy. Progress was exciting.

But silent days would still come, and I still wanted more.

A month before turning five Johnny broke his arm. Sleep was rough. A little boy who already had trouble falling asleep was not going to be doing better with a cast on his arm.

One night though, the best thing happened. I was lying next to him trying to make him comfortable and he bumped me with his cast. An automatic “ow” slipped from my lips and I heard the most beautiful little boy immediately say “sorry.”

One word.

One spontaneous word.

Just a quick “sorry” meant so much to me. I will never forget.

He didn’t have to think about it. He just said it.

Now here we are at five and a half. Language has grown so much. He will ask for his favorite things—to watch Charlie Brown, ask to read Chicka Chicka Boom Boom, for an orange to eat.

Amazing. I feel like he’s personality is finally showing. I know what he likes and doesn’t. I get to know him. I even get an “I love it” or “I love you mommy” sometimes.

Music to my ears.

Some days he still disappears. It’s all scripting or singing. Eye contact comes and goes. I would love to have a conversation. Really hear about what he did at school, how he feels about any situation, why he does or doesn’t like something.

I really want to ask where he was and where he goes.

Does he just not care to speak? Or do the words get lost on their way to his mouth?

I assume the latter, but maybe a little of both. I assume there is so much going on in there, and I pray one day he can tell me all about it. Spoken or written I just want to know.

Unqualified

Unqualified.

That’s how I felt when I found out my son was diagnosed with Autism at almost 5 years old. We knew it was coming, but now it was official. Things were never going to get magically easier. This was a lifetime calling.

I was not prepared. I hated making appointments, filling out paperwork, awkward situations, sleepless nights. As a parent to a special needs child or adult those things happen often.

Outside of the tangible things, would I have the patience and longevity to parent for life? I was unsure. I was scared.

Once I started talking more about Johnny’s diagnosis I got everything autism related messaged, shared, and told to me. I didn’t mind it. It meant people cared, wanted to relate and they wanted to help.

Sometimes it was uncomfortable. I would be sent quotes that said things like, “God sends special needs children to special parents” or “special needs parents are angels walking the earth”. Don’t get me wrong, there are amazing parents to special needs children all over the world. Some of my friends amaze with their strength and advocacy. I strive to be like them. But none of us are perfect. Being called an angel is nice, but that’s quite a lot to live up to. I am just a mom trying to advocate and do the best for my child.

Having an autistic son has made me a better person, but that’s not guaranteed. There are people who can’t handle it, there are people who are just awful.

Saturday morning Rebecca Greenwood, 52, and her stepson David Matheny, 33, were arrested on charges of criminal homicide. Greenwood had called 911 Friday saying she found her autistic son, Sayeed, unresponsive.

She claimed her son had fallen in the shower and hit his head the day before and that she continued to check on him throughout the day. She then went out for drinks that night and then to bed. The next day, Friday, she said they went shopping for cleaning supplies and to get food with Matheny. Then went home to cleaned the apartment and when they went to check on Sayeed he was not conscious so they called 911.

Sayeed was pronounced dead and injuries were not consistent with Greenwood and Matheny’s story. Under questioning by police, Greenwood admitted she watched as Matheny and Sayeed had an altercation. Matheny punched and stomped on Sayeed’s head. She claims she told Matheny to stop, but never made sure that he did.

The cleaning of the apartment was to get rid of evidence of the attack. The mother and stepson pair were each charged with criminal homicide and one count of tampering with evidence. Greenwood was also charged with child neglect, and Matheny was charged with child abuse. They are both being held on with no bond.

**Rebecca Greenwood and David Matheny. Images from the Metro Nashville Police Department’s Twitter account**.

This story and similar stories break my heart. That poor boy was not given to special people. Like many children, life dealt him an awful hand. Being a special needs parent requires a lot of patiences and love. It’s not guaranteed though. Sayeed did not receive any of that.

I could never imagine hurting my Johnny. There are very hard days. He takes a lot from me, he pushes buttons, he needs constant attention, meltdowns come and go, but I see that he can’t help it. I did not know if I could do it everyday, but I do. I do everything in my power to be a better person for my child. I fight for him, I learn from him, I always remember to love him, I never want to fail him.

Rebecca Greenwood failed Sayeed. My heartaches wondering what his day to day life was like. I wish all parents who have special needs children were all born up for the task; perfect people given God’s angels. But that doesn’t happen. Almost anyone can have a special needs child. We are regular people. Some of us grow, learn, and do our best, but others don’t.

Sorrow, Sadness, Hope

Grief is usually a word associated with death.

A deep pain and sorrow that stabs at the heart.

A mourning.

I think that’s why a lot of people take issue with parents of autistic, or other special needs children, saying they had to grieve when they found out. How can you grieve for your living child? To be honest it does sound awful. Even worse being that child and hearing your parents had to grieve over you. I understand.

The truth is my son, Johnny, is five years and was recently diagnosed with Autism Spectrum Disorder and a speech impairment, and I grieved hard when I found out. Some days I still do.

The thing is I don’t grieve over Johnny, I grieve over the expectations I had.

If you think about it, many parents do that. When their child doesn’t like the sports they loved growing up, or when they drop out of school, or decided not to get married or have children. I certainly did not follow the path my parents wanted me to take and that hurt them at times.

A lot of parents, whether they realize it or not, put so many expectations on their children the moment they enter the world. Then when the child doesn’t go along with it, some grieve what they thought should have been.

With autism the moment it’s brought up by the doctor, or when you get the diagnosis, it all comes crashing in at once.

The dreams crash.

The wishes disappear.

The hope dies.

Everyday small expectations come crashing down.

The day autism was first brought up at Johnny’s two year appointment I was in full denial. I thought it was just a speech delay, he was just shy, I thought “he’ll grow out of it”.

I was mad at the pediatrician for spending the whole appointment on that one topic. I wanted to talk about his sleep issues. Which in hindsight is hilarious. Many ASD children have sleep issues.

With most autistic children diagnosis isn’t at birth and certainly not during pregnancy. You don’t usually find out and until a few years into their life. For us until then the plans in our head continue to be made, because it was all going to be fine.

I thought I knew who my child was and then suddenly someone told me I didn’t at all.

That I was wrong all that time.

The grief began and I started to realize that at that time:

My child never talked to me.

We couldn’t do the sports everyone was starting.

No easy family outings to the store were possible.

He had no interest and they weren’t coming.

Everything was forced and hard.

I watched how everyone got to live their dream. I was confused by why mine wasn’t coming. Why my child seemed to be suffering through life.

From the beginning it was clear that Johnny was different, but sometimes that difference was small, other times it was huge.

When four finally came and I was sure and we officially sought diagnosis. Many tears were shed.

It was official:

Johnny would never live a typical life.

His journey would be hard.

He might not ever drive.

He’d have to defy statistics to get married.

He very likely won’t have kids.

That’s a lot at four. The day we got the diagnosis I cried and mourned a life my family would never have. The safe walls of the life I was building in my head were bulldozed all at once.

Now I think I’m entering acceptance.

We have new dreams, wishes, and hopes.

But the sadness still comes in waves. When I see friends with their kids in regular school.

When I see kids starting piano lessons, playing sports, or riding bikes I get sad. Kids having full conversations with friends and family pricks at my heart. Even watching my daughter pick up on things, and learn, from just watching us and others is hard some days.

The thing is now Johnny notices those things too. Sometimes he wants those things, but doesn’t know how to get them. That’s the worst part.

The hard days are always hard, but even on the amazing days sometimes I get sad it’s not enough.

None of that is Johnny’s fault the kid is freaking amazing. He works so hard. He’s coming so far and has already defined some many odds. The pride I have in that kid makes me want to burst.

To many people reading this who have typical kids or no kids. You probably think I’m crazy. You don’t think you’d mourn. I would have probably said the same, but here I am and it’s awful and feels wrong.

When I was pregnant I never made a list of the things I wanted my kid to do or who I wanted him to be. Some things you think will just happen. You assume your child will talk, your child will look at you, your child will have interest in something, your child will be teachable.

We have those things now, but they didn’t come easy and they still don’t look typical. We fight for them all the time.

Yes I grieved what I thought was going to be, a life that won’t come, sometimes I still do, and that makes me feel guilty, but I am so grateful for my son. Johnny has changed me and my life. I’m sad his life is hard and many times uncomfortable. I’m sad our road is hard, but I am always working at finding the light and making his life better.

Lunchbox

Today I forgot Johnny’s lunchbox and it’s been a day.

Yesterday was an amazing day. We went to a nearby farm for their pumpkin patch and other fall activities. Johnny did amazing. He watched a magic show and laughed hysterically, he interacted with us, picked a pumpkin, and played with his cousins. Of course, after an exciting day like that he was over-stimulated but we came home, let him settle and went to bed.

Overall a great day. Adding to a great couple of weeks we’ve had. He’s been making so much progress. Things have been good. How soon I forget that every time we go forward it’s time to start the countdown to going backward.

Last night was rocky – but okay. Everyone ended up in our bed at some point. Not exactly comfortable for this mama. So the morning ended up a little rushed. I could tell Johnny was off. I figured it would happen after a special day; but I hoped getting back to the routine would help him.

In the chaos of the morning I messed up. I didn’t notice until halfway to J’s center that I forgot his lunch. Immediately my heart sank. I tried to hold onto some hope. He’s been doing so good. Maybe he’d understand and it’d be okay. Maybe I could drop him off, pick up my nephew who I watch, run home, grab lunch and get it to him long before time to eat.

But then dropoff didn’t go great. He cried when I left. He never cries like that anymore. It was an off day. But once again optimism hit. He loves his center and therapist; once he got in the room and started going it would all be fine.

It wasn’t fine.

When I entered the lobby with lunch in hand, the office manager came running from the back saying “I’ll take that back” in a flustered tone. She said there’d been a long recovery from him not having his lunch box. So, for the the hour and 10 minutes that it took me to get the lunchbox and come back, he’d been having a meltdown.

My heart sank. My son was panicked, sad and confused because of me.

I know what some would say. It’s what I may have said before Johnny, “Let him cry. He has to learn to deal with these things. Life’s hard he’ll learn.” The thing is that yes I hope he slowly gets used to things not always going perfectly. The world is not going to cater to him, but he won’t learn because I let him cry or tell him to “suck it up”.

Every weekday Johnny goes to his center. Everyday, he carries in his backpack and lunchbox. Everyday, he hangs up his backpack in the lobby and goes into the back with his therapist and lunchbox. The first thing he does in the back is put his lunchbox in the refrigerator, then his day can start.

In his mind that’s how it goes. He can’t understand when it doesn’t go that way. Occasionally, with time and repetition we can explain if something new or different is coming. Today things were already rough, I tried to explain, but it didn’t help.

He did not have his lunchbox or his water bottle that comes with it. He couldn’t get past it. Anxiety took over.

As a mom I feel like I ruined his day, his therapist’s day, and my day. I feel horrible for making my son feel that way. I’m always taking precautions. Trying to make sure I have everything ready to help him. Some things are out of my control and that’s okay. I know anxiety and meltdowns will happen, but when It’s my fault the guilt is unbearable.

I never thought I’d be the perfect mom. I am not a type A personality. My house would never be perfect, my cooking would always be just okay, we’d always be a little disheveled, and that’s how it is. I own that.

But when it comes to autism I have to be on it. I have to do my best or I feel awful.

Sometimes that pressure is a lot. It’s a little suffocating. I know I look like a crazy person a lot of the time. My mind is always 5 steps ahead. I’m planning out every way things can go wrong before they do. I just have to mentally be ready. Dropping the ball has consequences.

I can’t even forget the damn lunchbox.

Stop.

We stop a lot.

Sometimes it tests my patience. A lot of the time we don’t have time to stop and touch everything.

Johnny is sensory seeker. He has to touch and examine every wall, fence, plant, car, etc. We try to guide him. It’s not always appropriate to touch everything. We can’t always take the time to stop and stare at one object for ten minutes.

Although, more and more I see the beauty in it. Our world may be too fast, loud, and bright for Johnny to take in all at once, but he finds the small, and seemingly insignificant, things so fascinating.

He takes his time to stop.

He takes the time to appreciate.

He takes the time to feel.

He takes the time to see.

He sees every petal. Every grain in the wood. Every texture on the wall. His reflection in the car. All the little things the rest of us don’t see, don’t appreciate.

Maybe we should all learn from him. Take the time to slow down and really see the small things.

Why I Cry

To my little boy,

You probably know by now, but your mom is a crier. I cry a lot. I cry when embarrassed, when frustrated, when sad, even when I’m happy.

I have cried for you many times.

I remember crying on the car ride home when you cried in the corner the whole time in the nursery at church. When the little girl at the zoo called you the “mean weird boy”. One day holding back tears when we were standing in the preschool drop off line and one of your classmates was talking to her dad on the phone.

I really cried when the doctor mentioned autism, after every evaluation, and when we got the diagnosis.

I just want you to know these tears aren’t your fault or bad.

In nursery, I wanted to make it easier on you and did not know how. I cried after the zoo because I hate it when others are mean to you. In the preschool line I was jealous that the little girl’s parents got to hear her voice.

When it comes to autism I cry for many reasons.

I cried because I didn’t know if I was worthy to be your mom, if I could advocate, and if I should have done more before. I also, was scared of the world for you. This world can be hard and cruel to the people it’s built for, I was not sure it was built for you. It’s loud, fast, and expectant.

Now I realize that I have to be the change with you. I get to be your mom so I have to advocate, do all I can, and make the world a better place for you. Behind those tears are a love for my son. My son has made me a stronger and better person, who yes, still cries but more and more they are tears of joy.

I cry at all the amazing things you do. Just the other day because you asked in a full sentence to watch a movie. My eyes welled when you hit a baseball and were so proud of yourself. I even cried when you tried to make me smell your feet. The happy tears make everything else worth it.

My tears mean I care about and love you so much. You are worth all my tears.

Love,

Mom