Back Then

I remember feeling amazed and nervously excited when I descended the stairs in our tiny 2-bedroom apartment to tell my husband of 8 years I was pregnant. He looked up at me, “Really?!” Nodding, I confirmed what we’d been planning for about a year. We were thrilled.

I devoured all the books, the guided meditations that were supposed to help with birth, ate all the ginger things and was sad when I had to quit my job because of severe morning all-day-and-night sickness. Eventually I felt better with the aid of medication and tracked all the changes in my body and read details about the growing baby.

Over a decade ago, Jenny McCarthy could be seen all over spouting her doctor’s erroneous findings that vaccines cause autism. Back then, this was my worst fear; (and likely a fear of many parents-to-be) that something could be “wrong” with the life growing inside of me. I remember telling my friend at the time, “I pray that nothing like that happens to my baby.”

Jacob was born 4 days after our due date and was a hefty 9lb 11oz. He hit all the physical developmental milestones, had the most adorable smile, and was the center of our world. I struggled with breastfeeding and postpartum depression, but felt our “new normal” of life with a baby around 3-5 months.

As he grew, we noticed little things that, at the time, gave us no cause for concern. Things like his inability to be laid down on his back while asleep. He would startle awake and scream. We carried him and let him fall asleep in our Ergo baby carrier. We co-slept because as long as we were all getting sleep, the location didn’t really matter to us. He nursed and didn’t desire solid foods. Getting messy and exploring foods with fingers seemed not to be his thing but for just a handful of times. He wasn’t verbal until almost 3 after speech therapy interventions. We had taught him sign language and had developed our own unique way of communicating. We discovered his right eye blindness as we prepared for preschool and kindergarten. Jacob struggled at the dentist and doctor visits. We prepped him well in advance for changes in routine, as well as transitions from one activity to another. We adapted. We learned. We read and researched and asked questions.

Jacob was evaluated at 2, 5, and diagnosed with ADHD-inattattentive type (with Autism Spectrum Discorder verbiage in the paperwork, but not formally ASD diagnosed) at 8, and now at 10 we are looking forward to another comprehensive evaluation. His IQ is 133. He’s crazy smart, and loves to learn about things that interest him. He as a 504 plan in place at school for accommodations as needed. We are working with an occupational therapist who has taught us both.

Sitting in the car before an appointment, we were chatting before heading into “food school”.

“Mom. I want to work at Microsoft,” Jacob told me, veering off of whatever topic we were currently discussing.

“Really? Why is that?” I asked.

“Bill Gates is thought to be on the spectrum. Maybe I could work with him and help other people like us. Plus, I like computers.”

“I think you would be great at that.”

As he walked into the appointment it hit me how far we’ve traveled on this autism journey. How scared I was for him, and frustrated at times because life with someone on the spectrum isn’t always easy. I struggled (and sometimes still do) when people are judgmental or unkind, knowingly or not. He makes me laugh out loud at his literal way of thinking, his interpretations of figures of speech and his other little quirks. I love the protectiveness he feels for his sister. He has taught me compassion, patience, and to slow down and see things from another perspective, that different isn’t wrong, it’s just different.

Back then, I just didn’t know.

I didn’t know how much I could love another human. I didn’t know that autism spectrum disorder really sucks as a label because it doesn’t feel like “disorder”. I stopped asking the futile “Why?” and “What is the cause?” questions years ago. It doesn’t do any good and there are no satisfying answers. It just is. I didn’t know that I would one day be thankful for resources and knowledge and tools to help him navigate and understand the world.

I never thought that I would be thankful for autism.

That was then.


Advertisements

Wish

I wish you could see…

I wish you could see what he’s like when no one is around, when no one is watching, warily sizing him up.

The funny boy he is when he’s not trying so hard

To impress you

Make you like him

To appear smart

I wish you could see into her heart

That she loves fiercely

Is loyal

That she really just wants what we all want

To be liked for who we are regardless of what we wear, the stuff we have or the place we call home.

I wish you could see that behind his awkwardness, his desire is connection.

I wish you could see that behind her striving and attention seeking, what she wants is to be marveled at and delighted in.

I wish you could see

That it’s hard to move and say goodbye to friends, and difficult to make new ones.

I wish you could see the way he cried when you called him dumb, carelessly throwing words around like it was no big deal.

To him it was a very big deal. Small things are big things.

I wish you could see the hurt in her eyes when you told her she was ugly, green envy soaked words aimed right where you knew it would hurt the most.

I wish you could see.

I wish you could see the progress he’s made, the milestones surpassed.

I wish you could see the way she smiles from her toes when she nails that cartwheel, backbend or some other contortionist feat; her joy when she learns the new song on her keyboard.

Her determination exceeds her age.

I wish you could see that what looks like disrespect often is his literal, robotic, fact-based way of seeing and relating to the world around him.

I wish you could see what I see.

Instead of judging what you don’t understand.

Inevitable

I entered the school cafeteria with my brave I’m-not-really-a-volunteer-type-person-but-I-want-to-be face on. PTA? Ugh. Being one of “those” moms? Please. Not for me. Always put together with makeup and hair completely in place? Not hardly – even if I wanted to be!

Exhibit A:

946617_4898195137149_461154355_n.jpg

I do not have the hair to pull off being one of those moms. Think Christina Applegate’s character in the film Bad Moms. Plus – I’m just not that good at pretending. I’ll take real and authentic any day.

I was shown how to ring up purchases at the school book fair, where things were and we were off and running. A couple of the volunteers were chatting about their kids, life, and some family dynamics. Then they came to the subject of one of their son-in-laws.

“But is he a good person? Does he love your daughter?” the one volunteer asked the other.

“Yes, but…” the other hesitated, then continued, “Basically – we think he’s autistic,” she said laughing. “He’s so abnormal. Just weird…and awkward…”

And that’s where I stopped listening. I figured it would happen eventually. Heck, if a presidential candidate thinks it’s okay to mock people…why would it be a big deal? I guess I just wasn’t prepared for someone to say it like that, in a school setting where there are likely far more spectrum kids than just mine. Never mind the fact that I had only met these women 30 minutes prior.

I had visions of being snarky and speaking up, but I didn’t. Should I have? Perhaps. I still had 90 minutes of a shift left so selfishly I chose to be quiet and remove myself from the conversation.

We sold books to kids, we straightened and organized. I volunteered and got out of my comfort zone. My retail and banking skills came right back. I came back the next day and volunteered some more.

It is inevitable. People are going to speak without thinking – myself very much included. Sometimes if just kind of sucks.

Fragile

Be careful with my heart.

I know how you look at me when I’m wth my children. I see you watching. I’m aware. I know what it looks like. I’m a fragile mom, yes, but a mom who is battle-tested and will no longer shy away from meeting your eyes. I will not be shamed. I will not let you tell me with your look and your eye roll and your mutterings under your breath that are just loud enough for me to hear that I am a bad mother.

I still feel the sting of your gaze.

Do I wish it was different? Sure. Do I wish life was easier for him to navigate? Without question. Would I change him if I could? Nope.

I used to think the Autism diagnosis would somehow be the worst possible thing ever about being a parent. I remember speaking with another expectant mom friend at the time, “Can you imagine? What if the baby has autism?” As if it is the worst possible fate.

It’s not.

It’s exhausting and challenging and rewarding – times that it sucks, and times that it takes your breath away with the amount of determination and persistence it takes to overcome challenges – that pride in the littlest of successes will be like nothing ever experienced before. But it’s not the worst possible thing to happen to a child.

I may have a fragile heart, but we are far from breaking.

It’s Time

When I was pregnant with him, I was sicker than I’ve ever been in my life. I read all the books, studied up on exactly how he was developing and growing. We dreamed about what this little baby would be like when we were able to finally meet him, like all parents-to-be surely do. When I held him for the first time I was on so many drugs from the c-section, but I distinctly remember the overwhelming and crushing tidal wave of love I had for this boy.

Watching your child grow and learn to crawl, and walk, and do all the miraculous everyday things they do is – in a word; incredible. Going through the sleepless nights, the endless days of diapers and feedings that feel like every day is groundhog day – all of it in hindsight seems to pale in comparison as we move into new phases of hard.

We’ve always known, really.

From the time he was two and half and cowering under a chair in the doctor’s office, when he still didn’t have any words at three, and stuck to the sign language and the mother/son way of communicating that we had developed, the way he speaks without consideration of volume and personal space, the rigidity of thought, and the extreme meltdowns when plans were not executed in the way they were supposed to be; we knew deep down. We’ve met with professionals, each reluctant to give us the official word for various reasons.

He’s not like other kids. He’s different.

He will eat the same 4 things every single day. For 5 years. Change to routine is hard. As a military family, moving is very challenging under the best of circumstances, it becomes chaos at times for us. Florescent lights in retail stores and the constant over-stimulation while shopping overwhelms him to the point of meltdown. Outsiders only see a bratty kid having a tantrum, because well, ‘he looks normal’. For the record, a meltdown is not a tantrum. While my heart is breaking trying to deal with his inability to deal with life, a stranger will mutter cruel and unwanted “advice” as they walk on by. This has happened more times than I can count.

It’s hard to watch your kid realize that he is different.

It’s hard to see him recognize that he doesn’t have many friends.

It’s hard to explain to him that to have friends, there has to be a give and take. He simply doesn’t have the social tools.

I cringe when people meet him for the first time and the wave of realization that he is different crosses their face.

I fluctuate between denial and harsh reality.

I’ve been living in the denial land of “he’s just a little different” and “maybe he will outgrow it”. We didn’t need a label before, but things are changing. Last night we met with his teacher at his new school. The first two weeks have been bumpy. He’s cried in class multiple times. He’s having a hard time adjusting. He is a quick learner and can do the work, but lacks the social skills for his age. He needs tools that a diagnosis will provide.

My heart breaks for his struggling little self.

It’s time now.

He’s different. He’s a kid who falls on the autism spectrum. And it’s okay.