When I Look at My Son and See Autism

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It’s amazing. Those days, weeks or months where you just feel like you are in a terrible slump… and then something beautiful happens to open your eyes to life’s idiosyncrasies. It makes you remember why it is you do what you do and what (or who) you do it for.

That happened today to me. I was rushing my son, Timothy, out the door to his marathon IBI session after school, and his hat’s brim poked me in the eye. It didn’t hurt, but reflex made me remark “ouch.” He stopped, and his eyes opened wide with concern. “Oh no, Mommy OK?” he asked as he brushed his fingers across my forehead over and over, searching my eyes for reassurance.

He felt remorse. Concern. Worry for someone else. My Timothy. This was the first time I’ve seen him show real, valid concern for me. Despite the hundreds, perhaps thousands of times he’s struck, kicked, scratched or head-butted me without batting an eye; he felt remorse this time. I wasn’t sure if he could feel. This moment meant more to me than words can say. It’s everything. It proves his mind is as beautiful as I always thought it was. It proves that even though the days are hard and sometimes I feel like giving up, I was meant for this, to be his mother.

The details aren’t important. What’s important is that he reached out through the invisible force field of autism and touched me. You see, sometimes I forget he’s a person and see him more as autism. It’s not right, and I don’t want you to think I condone it. But if I’m going to be honest here, as I swore I would be from the beginning, then there it is. Sometimes I allow my mind to drift to the what ifs, whys and maybes… but really those don’t help anyone, least of all Timothy.

Who cares why he is the way he is? Is it my fault? Maybe. Doesn’t matter.

What matters is now. And who I’m doing it for is Timothy.

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This post originally appeared on The Book of Timothy.

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How a Stuffed Animal Helped Us See Our Child as More Than a Diagnosis

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It’s a special kind of hell to know, or to think you know, there is something wrong with your child even before they are born.

It brings forth a cold, bottomless fear. You don’t even realize you are doing this really natural, almost unstoppable thing– fantasizing about your  unborn child’s amazing future. But you come to know you are, or had been, fantasizing, because all of a sudden a doctor tells you something that stops you dead in your tracks.

You instantly try to freeze your thoughts, afraid to think anything good or bad. You try to think nothing, but we all know how that goes.

After we were told, at our 20-week ultrasound, our son, Pedro’s, brain was malformed, I could only picture him as a teenager, skinny, non-verbal and in a wheelchair. For some reason I permitted myself no other “fantasy.”

Speculation about any illness is dangerous territory because our minds naturally go to the extremes, which is why I could only imagine my biggest fears for my child. My tough, wise mother says to just stop yourself from speculating. Tell yourself to “stay in the middle.” Again, easier said than done, but it’s something, in times of crisis, to shoot for.

We forced ourselves to the middle by getting busy getting used to the diagnosis.  First, we cried, together and apart, taking turns learning to console one another. We were older parents but also newlyweds. We had not even celebrated our first wedding anniversary. I had never consoled my husband, Jose, before; I had frankly not known him long enough.

Although I have always been sort of selfishly excessive in my own emotions, I learned I did not like to see Jose sad. I could not stay sad if he was down. I learned I could buck up when presented with Jose’s grief. I got strong to bolster him in his weak moments. He did the same for me.  Our recently stated wedding vows, “In good times and in bad…” took on a new and urgent meaning.

Although at first we promised one another to not say a word about our news and to just  try to proceed as though nothing had happened, we did not stick to this. We did the opposite. We shared the news with our closest family and friends, and our priest.

We found many of our friends had stories and information that was helpful and comforting.  They shocked us by their willingness to share their own, sometimes very painful, experiences.  We asked for whatever types of prayer anyone could offer. We felt literally embraced, supported and transported by our community.

We read up on the condition and explored every resource that somehow related to it. Armed with a clipboard and questions we saw many doctors and specialists. We believed information would be our shield, so we devoured every fact or insight we could find.  Sometimes, often, we hit overload and would have to take a break.

Eventually the cloak of terror that dropped down on us the day of diagnosis lifted, becoming a kind of pain shawl we wore everyday, but were becoming more adept at functioning in.  Strangely, in a little over a month, we grew somewhat accustomed to our new perspective.

But then we took it a step further than acceptance. We realized we had been given the joy of pregnancy, what would be for me, at age 43, my only pregnancy, over to the diagnosis. Pedro had become the diagnosis.

So we started, as so many parents do, to read to him through my belly, play music to him with an iPod attached to a special belt (We found our boy moved crazily to Adagios– he moved so much we worried we were damaging him further).  We talked to him, and we felt a little better as he became more human to us and less of a diagnosis.

The monkey was what really saved us, and I recommend getting one to anyone reading this who is in a similar situation.

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It was after work, and I was wandering the aisles of our enormous local Wegmans store when I found myself stopped in front of a shelf of small, organic stuffed animals. There was a little tan monkey with a white stomach who smiled  at me from his shelf.

I reached out  for him  thinking, “If Jose was a baby monkey, this is what he would look like.” This made perfect sense to me at the time, as did my next thought: “This must be our son, our beloved, though feared, Pedro.” This cute monkey was not scary– he was adorable, just as our son would be. The monkey went into the shopping cart.

Driving home, I wondered if Jose would find it silly, my visceral attachment to this little stuffed, perpetually smiling being. I played out my explanation in my mind. When I actually showed Jose the monkey, I stumbled over my words, suddenly unable to articulate the certainty I felt an hour before. It didn’t matter. Jose reached for him and placed him on his chest, a foreshadow of the pose Pedro would take months later.

Suddenly, our baby was real.

We had a way to hold and cuddle him, to see him, to know he was not a diagnosis.  Of course, here was our beautiful baby boy. We were three.

From that point forward, every time we were about to leave the house, one of us would say, “Where’s Pedrito? We need him with us.” And so he came along and helped us move forward, quietly preparing us for the real Pedro, who was and is much, much, much more than a diagnosis.

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The One Thing I Wish I’d Fought Harder For

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Regrets — we all have them in some form or another. I suppose that the toughest ones for a lot of us revolve around our children and parenting in some way. I generally don’t like to hold on to them. I am, for the most part, a “glass half full” kind of gal. A positive person. So “could have,” “should have” and “would have” regrets are generally not my thing.

My family has moved a few times recently. Big moves, to different states. I said to my husband once when we were recently discussing moving, “I think I can be happy anywhere.”

He looked at me and, with a hint of disgust, said, “Yes, I think you could.”

He is the yin to my yang, so to speak.

I believe contentment and happiness come from within, and I am aware that all of that is often easier said than done. However, it helps me to remember this during difficult of times and circumstances, when things catch us off guard and when life suddenly takes a left turn and we have no idea how we got to a place we never intended to be.

That being said, honestly, I do have a few regrets.

Several years ago, during one of my lowest points of desperation, helplessness, heartache and anger, I just cried, “God you have to help me, you are supposed to help me. I don’t know what else to do. Please, just point me in the right direction.” I essentially promised that if God would point me in the right direction for my son, Cooper, I would walk forward with everything I have and not stop.

Here is where the regret comes in. To be totally honest and fling my cabinet doors wide open and let you see the mess, there have been times when I just gave up. I know as parents we are supposed to advocate and fight for our children with everything that we have. And we do, for the most part.

Looking back, though, there are things that I wish I had fought harder for and had not given up on.

One of those things is inclusion. Yesterday, when I read this post, my heart broke a little. It broke because I regret not fighting harder for Cooper to be included.

My daughter, Hannah, grew up with a boy in her grade who had autism. He was fully included from the beginning. When Cooper was getting ready to start school, I remember asking Hannah questions about how this classmate functioned in the room — everything from what type of work he did to a barrage of questions about how the other kids interacted with him and treated him. Finally, exasperated with my questions, she gave me an answer that has warmed my heart and haunted it at the same time.

“I really don’t know what you want me to say. He’s just one of us.”

Inclusion is important because it leads to community. It is something that typically-developing children have because they go through school with a community of peers — a group of friends who, for better or worse, have a bond. Yes, some are stronger longer lasting or more more resilient than others. But in some form or another they all have a sense of belonging, of being a part of something. They recognize each other and say things like, “He’s just one of us.”

When children are denied an education, they are denied a community. Our children miss out on a support system. They miss out on friendships, valuable learning experiences and life lessons.

Cooper does not have that sense of community found among classmates. He does not belong, he’s not one of them. While this makes my heart sad and I regret not fighting harder, I can not change the past. We can only move forward.

Inclusion creates community. Everyone matters. Everyone has value.

Fight. Do not stop.

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How Special Needs Parenting Is Like Getting on an Airplane

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dv2073216 Do you remember what the flight attendant says at the beginning of a flight? The part about securing your oxygen mask before helping others in the case of an emergency? I always nod my head in agreement. But sometimes, we need to really listen. Stick with me for a minute as I compare special needs parenting to flying the friendly (or not-so-friendly) skies.

We’re used to this turbulent flight of life with special needs. Routine and good planning gets us through the usual bumps of a busy schedule of “regular life” plus therapies, doctor visits and so on. Mommy has packed snacks and games to keep us all entertained — no worries. Little moments of prayer at church and date nights with the hubby smooth out the other bigger bumps. Then life gets a little more turbulent.

Late to swim, late to martial arts. Bump. Extra chats with friends while in the car running from here to there for a little in-flight entertainment smooth the journey. You’re out of clothes in the middle of the week? But I just did laundry. Bump. In trouble at school three days out of five and phone calls from the other kids’ teacher? Extra activities that are fun but require more running and balancing and shopping? Bump. Extra coffee break, breathing, snuggles in the quiet moment. Check. Short-staffed at work for even longer? Hubby working late more? We’re back to not sleeping through the night?  Bump. Curve ball at the IEP? I’m out of snacks. Slap in the face of more milestones not met again? BUMP. If I have to sing one more song or remind you to use your words or answer one more ‘why?’ I may lose it. More screaming and complaining? Of course you don’t like what I cooked for dinner. Lunch meat that I was going to use for lunch is out of date? I forgot to send what paper to school? Four Valentines parties? I only have two kids! BUMP. I can’t breathe. I’m out of soothing words, and it’s only 9 a.m. 

Mayday. Mayday. This mama is going down.

Wait… what was that someone said about needing to breathe so you can help others? When exactly am I to do that?! Right. Now. If you can’t breathe, then you can’t teach them calming breaths in a meltdown. If you can’t find kid-appropriate words when you’re mad, then how can they? Easier said than done, I know. Mommy guilt sneaks in even when you know you need a break. I suggest Girl Scout cookies, a bottle of red wine and a book that has no pictures. If you can find 24 hours in a hotel room to enjoy silence, it’s totally worth it. If it’s finally taking someone up on watching the kids for an evening/afternoon — totally worth it. If it takes putting your kids to bed 30 minutes early without telling them (may take some pre-planning of changing clocks, just don’t forget to change them back once they’re asleep) — totally worth it. 

I again have snacks for the bumpy flight (not Girl Scout cookies; those are only for Mommy). I can sing that song again or maybe even 400 more times if needed to calm someone down. I can smile and be happy for my friend that got to go on a real vacation. I can welcome my hubby when he comes home late from work with a kiss rather than a rant. I can send calm emails to advocate for my kids and notice the great moments while flying the friendly skies of parenting.

Show yourself some incredible love. Do something nice for yourself. You deserve it. (And so does the rest of your loved ones who have to deal with your crankiness when you don’t.)

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To the Woman in the Grocery Store Who Turned Out To Be My Guardian Angel

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Two and a half years ago, over Father’s Day weekend, I went to the gym and then out to buy steaks. I’d been having short, intense headaches, but at the moment, I felt great.

I went in the store with two of my children, the third choosing to sit in the car right out front. I went to get the steaks, and all of a sudden, my tongue went numb. I felt an icy line separating my brain from my head. I couldn’t speak; I started to shake and drool.

I went to the side of the store and held onto the counter. I sank to my knees to signal that I needed help. I heard my kids start to laugh and then start to cry. A voice said, ” I think something’s going on over here.” A woman, my angel, came over to me.

She started issuing instructions. Someone to take my kids away, someone to call 911, someone to look at my ID and find my name. She told me who she was and that she had some medical training. She gave me a tissue because I was drooling and held my hand. I kept trying to speak to let her know I had another child outside, but she stopped me, telling me I was only getting more upset because I couldn’t talk. Then I heard my oldest son tell someone about his brother and that my cell was in the car and he could call my husband. My angel called my husband, helped get me and my boys to the back room and stayed until the EMT arrived.

I was later diagnosed with a brain tumor and so far am doing great. I’ve had great doctors, my best friend works in oncology and paved my way for me and a million people support me. But that woman — she will always be part of my story. She kept me and my kids calm in the scariest of situations. She held my hand. I will always be grateful to her.

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My support system.

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To the Man at the Auto Shop Who Asked About My Preemie Baby

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Seven years ago, my daughter was born three and half months prematurely.

Every day was a battle for her, and every day was a battle for us financially. We had next to nothing and were living at The Ronald McDonald House in Colorado Springs, Colorado, and I was a thousand miles overdue for an oil change.

I found the cheapest place to spend my last $30 and naturally had to decline any extra services. As I waited for my car to be finished, a gentleman asked about the photo of a baby on my dash. I explained the circumstances of my daughter’s birth and fight, and he said we’d be in his prayers.

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As I went to check out, I was told our bill had been covered. If I’ve ever needed help, it was right then, and I believe God sent me to exactly the place I needed to go.

I’ll never forget that man and am reminded of him any chance I get to pay it forward.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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