Eye Contact. Please Look at Me.

Eye contact. A skill that Lucas rarely engages in when someone else is initiating the conversation, or requesting something of him that he does not really want. I know that I am a work in progress in regards to my parenting and learning more about autism. But, I started writing to be honest with myself. So here goes. It often breaks my heart that Lucas won’t look me in the face except for occasional fleeting moments, when he is trying to make sure that I hear his excited request for a favorite activity or favorite thing to eat or drink. In these moments, he will actually move my face with his two little hands, and position me to look closely at his face, assuring I don’t miss the details of his request. He carefully states his desire with anticipation. “I want milk please!” It is the sweetest thing.

That is when he wants something though. If I want to call his attention to something, I can say his name several times and get nothing out of him in regards to eye contact, or looking my way. I have learned how to get his attention. I go close to him, bring my face into his direct line of view and speak concisely, slowly, clearly. He usually responds to this. And I am grateful that we have come so far. But, there is still a part of me that grieves being able to enjoy him face to face, looking into each other’s eyes, for longer than a brief fleeting moment.

Lucas is so active, that he is pretty much a blur of constant movement, both in real life and in most photos I try to get of him. I used to be able to get him to give me a great smile in photos when I put the phone’s camera in selfie mode. He’d smile so excitedly to see himself in my camera. It was almost a foolproof way to get my great shot of him! However, he has evolved. He has learned that he does not like to look and smile for photos. That makes 90 percent of our shots either him angry or blurry from the fight to get away from the photo scene or a view of him looking at whatever has captivated his world.

This doesn’t seem like that big of a deal. I get it. But, it is to me. I will only have him this small for a little while. One day, my memories will begin to get a little harder to pull up, and details will be lost. I will want to go back through tons of old photos, and relive some of these days. Most of them will be the side of my son’s face, or him blurry as he runs, flips upside down, or yells ‘No!’ I suppose these memories will be accurate. And I will think to myself, yes, that was my little Lucas, super active and silly. But in the meantime, I will enjoy my little moments. Few and far between, but oh so treasured, when Lucas grabs my face and puts his eyes locked right on mine, and asks me, “Mama can I watch PJ Masks on TV?” I will basque in the eye contact and look of love and hope in his eyes, take in all his features, his forehead, his eyebrows, his nose, his wet little lips, and his curls. Almost as soon as I have the moment, it is gone. Knowing this reminds me to adore each and every millisecond lavishly.

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Our Unapologetic Adventure at the Aquarium.

Last weekend, I decided to be spontaneous with my boys, and try something different for us. I was inspired after being unintentionally reminded, that morning, that Bank of America account holders are granted the perk of free access to museums every first full weekend of each month. With a discount and a destination, I figured we’d go for it. My husband was going to be working, so the ratio of adult to child felt scarily low, yes, even though I only have two. They can be very challenging! When ADHD and autism rear their heads at exactly the same moment, I better be ready to think fast about how to handle the situation, or something manageable can become a screaming match in seconds. Somehow this morning, it just felt right. So we headed to the aquarium.

Usually when I am alone with the boys, things go something like this:

Lucas can’t have something exactly his way. He starts flailing his arms and legs, throws himself on the floor to escape the person trying to hold him back from it, starts screeching a shrilled repetition of grunts and protest, which increase in volume during every second that passes without proper coaching to employ the techniques we’ve learned in therapy. Things and people get kicked in his rage, possibly bit, items around start to get knocked over. People start staring.

Meanwhile, Omar begins walking away, getting into something he shouldn’t, too far to hear my calls for help with Lucas. Then he starts making his own sounds, to entertain himself. Making it harder to hear me asking him to come back and give me the thing in the diaper bag that I know might help to calm Lucas down.

More people start staring, I try desperately to maintain a slow steady rhythm of breathing so I don’t burst into a yelling fit, that somehow feels it will make this overwhelmingly difficult moment more in my control.

In true fashion, said scene plays out at the aquarium. I finally get Lucas to listen to me about taking deep breaths himself. He imitates me taking them with his lips quivering, and tears still rolling down mid cheek. We negotiate how we can address his need within a reasonable context. Turns out what he wanted was a blue paper that laid on the floor of the first exhibit, amidst onlookers’ feet. It was perfect to him. His favorite color. Blue. With letters on it, pictures on it, and it was a familiar shape, a rectangle. In his eyes, it was in danger of getting stepped on or maybe picked up by someone else who viewed it as the wonder that he did. His extreme behaviors all came from the thought that he wasn’t going to be able to grab that blue rectangular paper, advertising dolphin tours at another part of the museum. Phew! Major meltdown averted. Luckily, what he wanted was simple and easily doable, this time.

From then on, with blue paper in hand, we were able to mostly enjoy the rest of our trip. I have been tending to avoid going to places like this when I’m the only adult present for the challenging parts. They often make me frustratedly question why I try at all. And, I had just finished deciding that I wasn’t going to apologize anymore about my son’s behaviors, and this a very public venue to experience any of that in. I’ll be honest. There was a lot of biting my tongue to not apologize. I had to fight the urge to explain my son to everyone often. But it was worth it. Not explaining him was wonderful. Not expecting him to behave the way “neurotypical” kids do was a whole new world for us. So what if he wanted to lie down everywhere and sit on the floor and be upside down? So what if his biggest pleasure was showing each animal on display his important blue paper? He had fun, he had freedom, he wasn’t boxed in by the person who is supposed to be his safety and love him more than any human.

And my older son? He stepped up to the plate big time as a great help and awesome big brother. Though, I can still see him looking around at everyone wondering what they think. Mostly, he is smirking thinking we all look crazy to everyone around us. For example, Lucas will yell things like “there’s something in my penis!” I quietly remind him that we say “bathroom please,” when we have to do peepee or caca. Hey, he is using communication with words to stay dry!!!! He is letting us know before it is too late. This is huge! We haven’t had an accident in toileting for over a week! I want to jump up and down and scream hallelujah, while the people in earshot of him are probably commenting on his choice of words. Or maybe they aren’t.

The point is, I was able to enjoy my family and our experience so much more than past outings, because, I am learning to really accept who my son is. I am letting him be who he is. Of course I still set the boundaries and expectations that are appropriate. But, they look different for him. That is ok. He is unique. We are all unique. We should all be so lucky to be so unafraid to be ourselves.

We were never meant to be perfect. Maybe perfect wouldn’t be as rewarding as it sounds anyway. Here’s our imperfect family photo for the day. A passerby so kindly offered to take our photo. I had to tell her, “don’t worry if he’s not looking. Just please take the picture anyway.” She took several, and here’s our best. Not perfect by the standards of us all looking, but it’s perfect to me.

It Hurts my Ears!

We made it to the aquarium today and had a decently good time! More to come on that soon, but I wanted to share something about our trip there… Lucas has auditory sensitivities, and he has woken up screaming before, “I don’t like that song!!!” (In response to specifically Zach Williams songs lol… if anyone knows contemporary Christian music- see link below). He won’t go to sleep without his Christian music app playing all night, hence the double edged sword. The very thing he needs to sleep wakes him up furiously from time to time when they play the songs that hurt his ears. This has been so consistent, that for a few months, my husband, my other son, and I all knew that if Lucas was screaming in his bedroom at night, it was 99% likely that the song Chain Breaker was playing… then he hated Fear is a Liar by the same artist.

I happen to love these songs, so we have had many a debate when they come on the radio in the car lol… but today… we were on the way to the aquarium and he was asleep in the car seat. In typical fashion, I was singing along to my playlist, unapologetically, loving the song on, enjoying the peace of his nap…lol when Lucas burst awake yelling, “but stop that song! I don’t like that song!” (One he had never disliked before). Ok… I understand his sensitivities, so I lower the volume and stop singing. Then he proceeds to say, “I don’t like that song, but don’t sing; but it’s too loud! But it bothers my ears. It hurts and it is like broken things are ALL OVER the place!!!” Lol… and just like that, ego blown 💣.. I won’t try to become a singer anymore… 🤣 Just kidding… no ego blown, as I know I don’t sing well.

However, I did take what he said seriously. His description sounds horribly aggravating and painful. I am so grateful that he has been able to learn how to verbally express himself better so I can understand what is bothering him! Because he explained it so well, I was able to help him understand that he can cover his ears with his hands until they felt better. He tried it, and, just like that, drifted back off to sleep comfortably. 😴😴 and I kept singing… but more quietly… 🎼😂

In our world of unpredictable sensory overloads, we love when we understand better what is going on that bothers him, so we can know how we can help make it better. We also love it when we are able to dodge a meltdown and find a, mostly, win-win idea! We are a work in progress for sure, but I’m so glad progress is happening.

When You Feel Like You Are Falling Behind

Loved this. Needed some of these today!

Discovering Your Happiness

SSENTIALs

Hello loves, ❤

1. There is no time limit on when you can find love or reach success. You have an entire lifetime to reach the goals you set for yourself.

2. Just because your friends have reached certain milestones by now does not mean you were supposed to do the same. Their answer to happiness is not necessarily the same as yours.

3. You are allowed to move at your own pace. You are allowed to take your time. You are allowed to crawl instead of run.

4. There are no shortcuts toward success. You have to choose the hard road, because the easy one will not get you exactly where you were aiming to land.

5. No one else is judging you as harshly as you have been judging yourself. It’s true that you are your own worst critic.

6. You might not be ahead of your competition…

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I Won’t say I’m Sorry Anymore.

I say it again and again. But, I shouldn’t.

I don’t know why I can’t seem to stop myself.

Why do I seem to care so much about what everyone else thinks when it comes to my son’s needs?

I won’t do it anymore. I won’t apologize for me or for my son.

The sign on the all inclusive kid’s gym, ‘We Rock the Spectrum’ says it all.

“Finally a place where you never have to say I’m sorry.”

I remember telling my husband in frustrated lonely tears, before the diagnosis of autism was confirmed, that I just wanted to go someplace set up exclusively for families like us. Where Lucas could run but not escape. Where turning on and off the light switches wouldn’t surprise or upset someone. Where the only other people there would be families facing similar challenges, trying their best, alongside us. We wouldn’t have to explain anything to anyone about his behaviors. We wouldn’t have to become defensive over judgmental looks questioning why our son might have done something the way he just did, or why I let some things slide rather than “disciplining him.” A place where I wouldn’t feel so impossibly pressed to control every situation that could arise and apologize for every ‘inappropriate’ behavior.

I had read about options: sensory Sundays at Chuck E. Cheese, special screenings at movie theaters, assigned hours for special needs families once monthly at the local children’s museum, and amusement parks that give passes to make accommodations. And finally! We got to experience some great memories at We Rock the Spectrum, LEGO Land and Busch Gardens, taking advantage of their special needs opportunities. We got to attend a special needs family boating festival, where each family was chauffeured via a private boat for an afternoon on the beach! How wonderful to be accepted and not have to apologize! These individuals were all trained and educated about including families with kids with special needs. These places were like an oasis in the desert! Amazing! Fulfilling! But unique. In the regular world, we were back to feeling like we had to apologize for all the ways we just didn’t quite fit in, or the ways we made others around us ever so uncomfortable.

But, why do I apologize at all? Because I think you won’t understand him, and I think you will interpret his behaviors in all the wrong ways. And the truth is, many people do.

He needs things his way. He needs to pick the color, the path, the conversation topic. He needs preparation for a transition from one activity or room to another. He doesn’t always like to share, and he may make unexpected loud sounds. He may scream or push trying to defend what he wants, when he can’t think of the words fast enough. He may hide under, inside, or behind furniture or inappropriate places. He may throw his body on the floor, in the middle of the walkway, and refuse to get up until he has been able to regulate his senses. He may try to take large amounts of food, if it’s his favorite, without asking. He has a need to climb stairs, whenever they are in his sight. He needs to be upside down quite often. He needs time alone. He needs time with his mama to feel safe, when things are overwhelming him. Don’t take it personally, when he doesn’t look you in your face, or respond the way you hoped he would. I won’t apologize for him anymore.

He is learning. He is growing, He is trying to make sense of his world in an array of confusing social cues and sounds. What interests him might be a particular aspect of something we never even noticed. He may dwell on it, and tell you about it over and over again. I won’t apologize.

I won’t apologize again.

He probably won’t say hi to you or bye to you if he isn’t in the mood. He may use his iPad the whole time we attend your event. He may not look up from it for you, and then he might for the person next to you, and give them the smile you were hoping for. I won’t say sorry. Not because I’m mean. Trust me. I don’t ever want to hurt anyone’s feelings. But, I won’t keep trying to carry the weight of everyone else’s feelings on my shoulders anymore.

Thinking back now, I don’t know why I ever said I was sorry. My world was changing faster than I could control, and I wanted to stop it. But the very thing I resisted was going to happen anyway, and I was fighting all the wrong battles each time I said ‘I’m sorry,’ on his behalf. I was fighting to keep things the same, while my son needed me to just stop and see him. He needed me to stop explaining him and just love him. And I need you to do the same, because I say this with sincere love for those who really care for us. I am done saying I’m sorry, both for my son and for myself.

I’ll Miss This One Day.

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Tiny fingers grabbing mine and feeling completely safe when our fingers interlock.

Tiny LEGO heads, accessories, and torsos scattered in the crevices of my car mixed with crumbs of last week’s snacks.

The way that only you can say “mama” and each and every way the tone of your voice while saying it means a different feeling you’re going through.

The way you can still fit in my lap. Even the black under your nails from having the time of your life getting dirty.

The smell of your sweaty little feet. The warmth and perfection of a hug from you, even when it’s pinching me somewhere, pulling my hair, or hurting my back.

 

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The sound of your footsteps running around the house with each other. The sound of your different laughters intertwining with each other’s, as you get into mischief or just enjoy the pleasure of each other’s company and sense of humor and body sounds, like farts.

The way your hair looks lightened by the sunlight shining in it. Your innocence yet simultaneous desire to be defiant.

I will miss the tiredness that came so often, set in motion by the busyness of your schedules, and by the strength you made me realize I had.

The sound of your laugh when you got me good with a tickle or popping out from hiding unexpectedly.

I will even miss the site of you in my rear view mirror trying to hide putting your finger in your mouth after it was most probably just in your nose before that.

I will miss seeing your little clothes on the floor that you didn’t pick up again.

Because all this still means I have you, this small, just as you are, before things change and you grow up. I want more than anything for you to be healthy and independent and successful in all the ways that really matter. But right now, I will treasure today, because one day I’ll miss this.

 

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