This Familiar Place

We’re almost two months into this school year. For the past week or so, I’ve noticed some regression in Little Man…..more tears, more outbursts, a couple of full-blown meltdowns. His anxiety level is up.  He’s pushing back more. Then we have that situation I wrote about last week. He’s not really interested in going back to that particular class. Friday and yesterday, he spent significant time in the nurse’s office complaining of a bad headache. Friday, I ended up bringing him home. Yesterday, I took him ibuprofen at 9:30, but then got another call two hours later to come get him.

He’s fine. No other physical complaints, just the headache that only appears at school.

Here’s what I think, having done this school thing with him a few times before. I think he’s maxed out. Does that make sense? He just reaches a certain capacity to tolerate it all, and then hits a wall. We typically see this happen six weeks or so into the school year. It doesn’t even take me a few days or weeks to catch on to what’s happening. I just  know, as soon as we see this regression start it’s because he’s tapped.

I can’t pull him out of school just because he’s reached a wall. I can’t let him skip doing his work just because he has little left in  his tolerance tank.  I can’t let him just escape. I do give him a little space where I can, but we can’t allow him to retreat completely.

It’s so painful to watch him struggle. It hurts my heart. The world isn’t always kind to everyone, much less those with different needs. Every time he goes sideways, I mentally go back to that night he told us this was too hard and he didn’t want to do life anymore. I’m terrified….that is my biggest fear for him, always. Once your child says those words to you, you will never get over it. It’s always there in the back of your mind. But then there’s a fine line between acknowledging that’s there, and pushing him through situations because that’s what he has to do.

We are where we are. We’ve been here before. It’s a familiar place. Even knowing it’s probably coming doesn’t make it any easier once you notice you’re there. But we dig in, we love him through it, we keep fighting. That’s just what we do.

The place we’re in

I came across an autism parenting meme on Pinterest the other day, and I had to save it, because it perfectly describes exactly where we are right now with Little Man. The meme said, “If things are going right, don’t touch anything, don’t change anything, in fact maybe don’t even breath. Celebrate it for as long as it lasts.” Amen, and pass the weighted blanket. This is where we are. This is where we’ve been for a few months now. I’m afraid to even type that out loud, for fear it will all come crashing down, and we’ll head back into the storm once again.

Most of his life, I’ve felt I didn’t have even the slightest handle on Little Man. Every time I’d get hold of one straw, everything would change again. He’d have new triggers, new sensitivities, new food aversions, new behaviors. When that baseball memory came up in my Timehop the other day, I read all the “rules” we’d given him before sending him out onto the field…..Don’t make dirt angels behind second base, don’t fill your hat with dirt and put it on your head, don’t throw your gatorade bottle at any of your teammates in the dugout, don’t pick the grass, don’t look for bugs. So. Many. Don’ts. I was a nervous wreck every game, every practice. We never knew quite how it was going to go. That was much of life with him.

The summer before he was diagnosed autistic, I spent every minute of every day micromanaging his life, trying to keep him from melting down or having a tantrum. I was exhausted. I believe he was too. I spent a few years on high alert 100% of the time. Third grade was relatively calm, but in fourth grade, we went right back to that hell. Fifth grade was good. Sixth grade was a nightmare. Sensing a theme here? This time last year, I started counting down the days left until summer. I was beat down. The beginning of this year was much better, and since Christmas, he’s been amazing.  I’m not on high alert all the time.

Sure, we have our routines and tools in place. But it mostly runs like a smooth machine. We just know what to do and how to do it. Am I feeling safe and secure here? Um, no. I’m like that meme….don’t change a dang thing, don’t touch anything, don’t even breath for fear of upsetting this precarious balance. That’s life with autism.

A friend told me long ago – and I’ve written of it too – that life with autism is like living in Seattle. It rains….a lot….but then you get those sunny days, and you just revel in them. The rain will come again, and it’ll be dark, but the sun will come again, for however long. The older he gets, the more tools we’ve given him, the more he learns and develops, the more sunny days we have.

The place we’re in now, it’s still that Seattle, but the sun in shining brightly. If I’m honest, though, I’m not really breathing, definitely trying to keep everything exactly status quo, and I’m seriously not touching any part  of his routine. I am enjoying every second of the sunshine. IMG_0560

I Found My Voice – Prematurity Awareness

I wasn’t much for causes as a young adult. Oh, I had opinions, and I respected people who fought for what they believed in, but I just never spoke out. Nothing drove me to that point. I participated in walk-a-thons and read-a-thons for MS and other things, but I wasn’t engaged. Nothing mattered enough to move me that far.

And then I had a very  premature baby. Life as I knew it was upended, changed forever. All my dreams were shattered. I had a baby fighting for his life, dependent upon me to advocate for him. I prayed, I begged God to save him, I watched him battle for every breath, every second of every hour of every day. I thought to myself, “If this tiny boy can fight this hard, I can fight just as hard for  him.” I discovered a voice I didn’t knew I had – a strength in myself I never knew existed.

Fast-forward four years, and my discovery of how research funded by the March of Dimes had essentially saved his life. Add to that their providing of an online support community in which I found others who spoke my preemie-mom language, who understood my fears, my anxiety, my grief, my pain. And then an outlet, a focus….we formed a family team to fundraise and walk in that organization’s annual March for Babies. I haven’t looked back. We’ve served as a local Ambassador Family, speaking at numerous events, participating in radio, news, and print interviews, my precious boy’s photos splashed across all sorts of media.

Then there came the autism diagnosis for Little Man, four years ago now. I had to again learn to advocate for my child, reach down deep inside and gather a strength I didn’t know I was capable of, to fight for my child’s needs and a place in a world completely NOT designed for him.

My voice – both written and spoken – was found through my children. I didn’t choose this path. I didn’t choose these battles. But they are our story. I speak out. I write. I advocate. I research. I help others just starting similar journeys. More than this, I’ve been given the courage to use my voice in other areas of life.

Today is World Prematurity Awareness Day. I’m wearing purple in honor of my beautiful survivor, for all those other precious babies who have come out the other side of a too-soon birth, and those for whom their early birth took them from this earth. We in this house are perfectly aware of Prematurity. We’ve lived it. But the voice I gained sixteen years ago, and the voice I have continued to develop over those same sixteen years, enables me to reach out and help others around me be aware of the severity of the problem of prematurity.

Hypersensitive much?

I’m an autism mom. I’m also a preemie mom, asthma mom, ADHD mom, mom to teens, mom to a middle schooler, part-time working mom, dance mom, cheer mom, golf mom, and cross country mom….but that’s all beside the point for today’s topic. I see the world through the lenses of an autism mom. Things that may have nothing to do with autism will sometimes still strike me as relating to autism or just special needs in general.

I took the Princess and Little Man to see Finding Dory last week.  We went because Little Man was OBSESSED with Nemo when he was little, and we wanted to come full circle. I loved Nemo too, if I’m being totally honest. Laughed and cried. We’ve watched it a thousand times, no lie. I didn’t read much on it beforehand – just saw a couple of snippets on social media. I saw some mentions of an autism connection,  but I didn’t read the details.

It was with those autism mom lenses I watched the movie. It hit me so hard – those silent tears dripped unwillingly out of my eyes. I cheered Dory as I would my own child when she completed a difficult and challenging task, when she did something she didn’t believe she could do, when she discovered her particular talents were looked  upon with admiration by those she cared about. “What would Dory do?”….the line undid me. It still does.

I cried when Dory’s mom worried to let her play with the “normal” fish, wondering if she would be accepted, or if her disability would cause her to be shunned, much less lost.I cried when Dory’s parents gave her the tools to survive, to find her way home, even though it took years for her to find her way back. I cried when Dory realized she’d used the tools her parents had given her, that they were right there all along. I cried when she believed in herself as much as others believed in her.

I spend my days reinforcing all we’ve taught Little Man, worrying he will be accepted, have friends, not be shunned nor get lost along the way. I try to manage as much as I can so he won’t see how different he is, so he will believe in himself, that he will remember all the tools we’ve given him, that he will find his way in the world and be successful in his own right.

I felt like Dory’s mom. When you have a child with special needs, who’s different, you worry, you fret, you do all you can to make their path easier….you sing songs, you reinforce, you encourage, you help, you hope and you pray. You leave a trail of shells (or goldfish crackers, or Pokemon, or Minecraft and Five Nights at Freddie’s plushies) because you know your beautiful child loves them and will notice them, following the path home. You hold your breath when he steps out on his own, into a new situation, possibly outside of his comfort zone. You wait for the sometimes-inevitable crash. You cry, and laugh, and sing when the wins come his way.

I don’t know if the writer of the script meant for all of that to come through in this movie. As I said, I had my autism mom glasses on, and carried that sensitivity into the theater with me. I will say, it was a beautiful testament to life with a special needs child. Let the tears flow, and the cheers roar.

 

 

Never say never, ever

It is rare I will comment upon, much less engage in, a discussion on a controversial topic on Facebook. It just isn’t worth it. There are too many people out there who are all too willing to spout vitriol and hatred rather than discuss facts, just because they’re “hidden” behind a computer screen and keyboard. I can count on two fingers the number of times I’ve ever chimed in, and then scuttled away, turning off notifications for that post. I don’t do conflict…I may have mentioned that before.

Two days ago, I came across a post on a community page for my town, and I couldn’t take it. I  HAD to say something. It was yet another discussion on vaccines being a cause of autism. (Thanks, ever so much Mr. DeNiro, for taking this discussion backwards ten years). The things people were writing in the discussion disgusted me, hurt me, made me angry. So I simply wrote I was offended by the discussion, as the mother of an autistic child, because A) vaccines do NOT cause autism; and B) saying your child becoming autistic is the worse than your child contracting an eradicated disease, a disease which could result in death, is flat-out insulting to the autistic community. Granted, I look at this through the lens of the mom of a high-functioning autistic person, but still….

I left the notifications going for a day, then turned them off. Somehow, one snuck back in this  morning. Knowing I would likely see something that would upset me, or be subjected to more anger, hatred, and ignorance, I still clicked the button to go see the state of the discussion. What I saw was a friend, one who knows us, knows our family, but whom does not deal firsthand with autism, was pointing out another person’s ignorance and prejudice of and against autism/autistic people. I was touched, but then I of course had to go backwards to get the context. What I read moved me to such anger, and such pain, I had to engage.

This man  had written that autistic people could not be leaders….that their autism precluded the ability to lead, that they could be “great in a think tanks or cabinets”….Oh you can bet I was absolutely FUMING mad. How dare he? How dare he say just because someone is autistic they are fundamentally unable to lead? (Saying all the bad words all over again just thinking about this) I pray this man is simply ignorant, has no experience with any autistic people. My response, out of the anger of the moment, was his statement was ignorant and prejudiced, and don’t ever tell me my child can’t do something because he’s autistic. I also told him to get to know some autistic people, maybe do some research on some of the seriously successful people in our world, and not just those from the past.

It terrifies me this level of ignorance exists. So much for raising awareness. Those were my thoughts. It breaks my heart to know there are people out there who would hold my child back/down due to some diagnosis. My child can lead, if he chooses. He is empathetic. He can focus on so many small details in a project. He is learned to collaborate. He has amazing recall.  His comprehension of the overall story is incredible. His curiosity drives his learning. And when he wants something, he will do what it takes to achieve it. Hmmmm…sounds something like a leader to me…how does it sound to you?

I turned notifications off again on that discussion. There are plenty in there fighting the good fight, with facts, intelligence, and compassion. My momma bear came out in grand fashion today. I can’t imagine it’s the last time it will happen. Just don’t ever say never, ever, about what my child can or cannot do as an autistic person.

Friday Favorites #20

Hey Herd Friends!!! It’s been awhile since I did Friday Favorites two weeks in a row. This work thing, and life, are keeping me jumping! Last night, home a bit early from the studio with the Princess, I was falling asleep on the couch at 8pm. I called it…went upstairs, showered, read for a bit, and was lights-out at 8:45.  Yeah, that tired. But hey! It’s Friday afternoon. We made it! Cheers!! Here are your Friday Favorites for today:

  1. I’m giving you this post from Wine Everyday because I decided to give up weekday wine drinking for Lent. I know….what the heck was I thinking? Anyways, Friday is the weekend, right? Not a weekday? Please? I’m not a huge Pinot fan, but this looked good. I do like Mondavi. They make good wines in the everyday wine sort of way.
  2. Sarah at Running on Healthy has had a streak of bad luck when it comes to customer service. In a writer’s way, she’s letting you know about it. If you received bad (and I mean horrifically bad) customer service, would you shout it to the heavens? Anyways, she’s taking suggestions for good headphones. Can you help a fellow runner out?
  3. Cooper’s Mom, who writes at Finding Cooper’s Voice, can always be counted on for letting in to see what life with a special needs kid is. It’s heartbreaking, but also so honest. She shares the joyous moments too. When you’re a mom who blogs about your special needs kid, you end up with a community. I’m glad she’s let me be part of hers.
  4. Valentine’s Day is Sunday. Have you bought  your love a card or anything yet? I went shopping this morning, although we don’t do much around here as far as gifts go. It’s more about time and food and wine (for us, not the kids) than anything else. Running  Sunflower gives some good advice, acrostic style, in her post, Reasons to Love Valentine’s Day. How do you and your significant other celebrate? Do you do anything special for your kiddos?
  5. This post from A Momma’s View speaks for itself.
  6. Valentine’s Day changes when you’ve been married for a good long while. Take it from Nutsrok.
  7. I remember taking the kids, without Spouse, to Chicago. They were pretty little, so when I had to use the facilities, they had to come in with me. And wouldn’t you know, it was “girly” time of the month. And wouldn’t you know, one of them just had to ask, in the loudest voice possible, “Momma! Why are you bleeding from THERE??!!!” I was totally mortified. But I’ve been reassured the like has happened to almost every mom. Big Man and the Princess were the fabulous toddlers who wallpapered my hallway wall with maxi pads (true story). So, when I read this post on Motherhood, WTF?  I totally laughed.

I’m still in recovery over Cute Overload being gone. Sigh….I guess you get to see more of my pets in action. We’ve had weather in the high 80’s this week. That brings out creatures of all kinds in the backyard. The cats are entirely too happy to bring them inside for playtime. I’ve had to put my lizard-rescue hat back on….

Keela's prize

We’re off on the ski/snowboard adventure tomorrow morning. Wish me luck, and send good vibes my way! Happy Weekend!

I don’t read them

It happens nearly every day…..a post pops up in my Facebook feed with an article on the early signs of autism. I used to read them. I don’t read them anymore.

Little Man was 7 years old when he was diagnosed, and in second grade. That’s kind of late for a diagnosis. And I kick myself frequently for not having him evaluated sooner.  Going back and reading things I wrote when he was four and five, sometimes even earlier, I see what it obvious now. I can’t undo what’s done. He was diagnosed, and we have help. I just wish we’d found out much earlier in his life.

I can’t read those articles on the “early signs of autism” because they hurt me.  They make me feel like I was an ignorant, naive mother living in the land of denial. In my defense, I tell myself he didn’t have the “typical” signs…he was very verbal from an early age, he was not delayed in any way physically, he didn’t line up his toys. Sure he had meltdowns and threw tantrums. He was a toddler. Nothing really seemed too far out of the ordinary. He seemed stubborn and too smart for his own good. It was only as he got older and the discrepancy between his social and emotional skills and those of his peers grew that we began to see. It was as he grew older and more rigid, we knew something wasn’t right. It was only as his meltdowns continued, his sensory issues grew, his need for order and structure became a full-time endeavor, we saw  how big his needs were, and began the evaluation process.

So why do I still beat myself up? I think that’s just a mother’s prerogative. It’s what we do. We’re so good at laying the guilt upon ourselves.  Those articles reinforce the words I hear in my own head of how I failed him. So I don’t read them. They don’t help me. They just make me feel bad.