Reach Back

When Big Man had been in the NICU just over a week, and it felt like we would never bring him home, his neonatologist introduced us to a family whose 26 week baby boy was just getting ready to go home.  Dr. S wanted to give us hope, let us know it was possible, there was a light at the end of the tunnel. That was the first clue we had an amazing doctor taking care of our boy. I am forever grateful to him for that introduction. It did give me hope – hope that carried me through so many bad NICU days. Later, close to the end of our own NICU stay, Dr. S brought a new family to meet us, to let them know there was hope, there would be an end to their own NICU stay, that they could make it, and our journey was the impetus for their hope.

Then when Big Man was four, I found an online community for NICU families. I knew I had to make sense of his early birth, and one way to do that was to reach back, and help families just beginning the journey. I shared our story repeatedly. I was honest about our journey to that point, and the challenges we were still facing. It became a mentor-and-be-mentored opportunity…..moms with preemies older than mine reached back and helped me; I reached back to pull up moms with preemies younger than mine. We built a community, and some of my closest friends today were formed then. And among family and local friends, I am the bedrest/premature birth/NICU “expert”.

My days were dark when Little Man was first diagnosed on the spectrum. It seemed there was an entirely new language to learn, new processes to develop, a new routine to become acquainted with. I was overwhelmed. I was heartbroken. I was terrified. It all seemed too much. But once again, there were people in my life further into the autism journey who reached back, shared stories, gave advice, suggested resources and different therapies, and offered a shoulder to lean on.  I still lean on them to this day, as they are still ahead of me on this  particular path.

We are six years into this life on autism street. We have some experience under our belts. We know what usually works. We have our toolbox. We know what to avoid, when to push, when to hold back. We know we can’t parent him out of being autistic, but we can parent him through it. Do we have absolutely shitty days, as we’ve had recently? Oh heck  yeah. Being an expert on MY autistic kid doesn’t mean we don’t still face many difficult battles and challenges.

Again, though, I feel a responsibility to reach back to those just starting this journey, to once again share our story, mentor, suggest, provide resources, let them know what we’ve learned and used to get to this point. In that reaching back, I find hope, and I find a purpose I can handle. It doesn’t make me happy he’s autistic, but it just helps me make a little bit of sense out of it. I wouldn’t wish autism street on anyone, but if we have to be here, we may as well help each other through it, right?

Once Again

I’m once again faced with the situation of Little Man having  new friend – one who has invited him over to hang out, and to go to the zoo at some point this summer. He went to this friend’s house for a birthday party yesterday, and even over an extended afternoon, seemed fine. But I find myself faced with the dilemma/decision/choice of telling this friend’s mom about Little Man’s autism.

Maybe she knows, or at least senses something. She didn’t say anything yesterday when I picked him up, but she has to wonder why a 13 year old chooses to hang out with a 10 year old. She said my guy waits for her son by the gate at school each morning too, and I know they spend hours facetiming, talking all things video game.

I haven’t had to struggle with this issue in a few years. What do I tell the parent of a new friend, when do I tell that parent? What’s best? What’s right for all involved?

If you didn’t know he’s autistic, you may just guess he’s either a lot younger than his chronological age, or just very immature, unless you have the pure pleasure of seeing him in meltdown or tantrum mode. Then you know for sure something is different. I don’t even know if his friend realizes he’s autistic.

I think part of me just wants him to be able to engage with friends without having Autism hanging over his head, part of me wants his life experience to be “normal” and me not have to consider this decision. But then am I being fair to that parent by not giving them fair warning, especially when they are going to be in charge of my child for a few hours? Sigh…….

What would you want to know about your child’s new friend, and when would you want to know it?

Guest Blogging

When I started blogging 12 (yikes!) years ago, it was mostly for me – to tell my story, to process life, to get support. My writing has evolved over the years, and enabled me to connect, as well as reconnect. What a privilege! To have someone I respect deeply, and appreciate even more, ask me (a second time!) to write a guest post is an honor, as scary as it is. It took me a few months to work out how the prompt/topic for this year with Miracles in the Mundane, but I think it worked out. Check it out here, and while you’re over on my dear friend’s page, give her some love. She’s an amazing writer, momma, friend.

Recreate, Re-Create, and Create at Miracles in the Mundane

Happy Wednesday

 

Loss

Good friends of ours lost their young son last night to a rare, incurable, horrible brain cancer. Spouse and I have both stumbled through our day today. I find myself in moments of disbelief, glazed and incapable of doing “normal”. I’ve wondered with other friends how any parent survives this loss. It hurts so much just being on the friend side of it.

My prayers yesterday wound down from long sentences, to hours of just, “Please, God.” And then this morning, the words were there. The dear boy had gone to be with Jesus last evening. Our hearts broke. We know him. We’ve laughed with him, swam with him, shared meals and football games with him and his brother and his parents. We’ve watched him grow from infant to a sweet young man, whose smile was absolutely contagious.

Loss isn’t new. I was heavily reminded of when my sister passed. I pray she is there for him as he reaches Heaven. But even that picture brings tears to my eyes.

I’ve known other parents who have lost their children. I found myself wondering yet again how such a terrible, indescribably painful thing could  happen to such amazingly good people.

In it all, I’m reminded, we aren’t promised today. We aren’t even promised all of today. Knowing that makes it a lot easier to say “I love you”, say “I’m sorry”, say “You’re forgiven”, to let go of the past, and treasure this very moment we’re in. I’ve spent today doing what needed to be done, but also checking in on my own babies a bit more than usual. It’s quiet around here today.

Slumber Party

Little Man talked us into a slumber party for his birthday celebration. He’s never asked for one before.  Parties are hard for him – he gets super excited, and that super excitement typically leads to a lot of anxiety. And he frequently shuts down during his actual party, with so much going on. But asking for a slumber party…we couldn’t say no. This, too, is a milestone for my sweet boy.

In 10 hours, five 9-12 year old boys will invade our house. We’re being very casual about it..pizza, cookies (he doesn’t like cake), and video games. Gone are the days of hand-made invitations, planned crafts, goodie bags, Pinterest-inspired cupcakes and decorations. We are past that stage, and I didn’t have the time this week to go overboard even if I were so inclined. Maybe it’ll be easier on him this way…no excessive excitement in the build-up. I just need to order and pick up the pizzas, and run to the store after my  yoga class this morning.

All the boys coming are great boys. They  know Little Man well, and seem to see past his issues. They’ve seen him in full-meltdown glory, but it doesn’t seem to phase a single one of them. He has surrounded himself with some really good kids. I appreciate each one of them.

I’d sworn off slumber parties after Big Man’s 10th, when we had 13 boys show up. It was your worst sleepover nightmare….and they were up until almost 3am. It’s taken me almost this long to recover. One of Little Man’s friend’s asked if they could “pull an all-nighter.” Unfortunately, he asked this question in my presence. You can guess what my emphatic answer was…NO!!

It’ll be fun. I’m sure it will get a bit loud. But the fact he asked for this slumber party….it makes me smile.  I’m trying not to think about him turning 12 later this month. My baby is not a baby any longer.

Bright Lights and Warm Glows

The Princess had some security issues a couple of weeks ago. It’s been building for a couple of months. Most of the problem is her view of it, and how she responds in certain situations, and the fact that she’s in it, rather than outside of it, and so doesn’t have the best perspective. Regardless, it prompted a few talks between us.

In this world are bright, noisy, sparkly lights, and warm, gentle, quiet glows. She is definitely the latter of the two. There’s nothing wrong with that. The people who are warm, gentle, quiet glows tend to hang onto people longer if they’re patient and understand those bright, noisy, sparkly lights are going to steal the show for a bit.

Some of her friends are bright, noisy, sparkly lights, and some of them are warm, gentle, quiet glows. The problem arises when the bright and noisy kind of takes over those warm and quiet friends, not necessarily intentionally, but just by way of their nature. While the Princess normally has no trouble standing up for herself, she struggled to deal with this situation. She didn’t know what to do, except get sad and upset. I said little at the time, wanting her to work through it. But then it came up in a bigger arena, and had to be managed. All is well, with little drama, thankfully.

I don’t want her to change who she is. She is a loving, sweet girl. She quietly goes about her business. She’s the same with her friends. But I did tell her she can’t just sit back and pout when the bright,  noisy lights grab the attentions of one of her friends. Pouting won’t get you anywhere. Sometimes, even the quiet glows need to make a little noise.

She understood what I was talking about. I hope she took it to heart. Time will tell. Oh, the joy of teenage girls!

Friday Favorites #19 (I think)

Oh my friends…how long has it been since a real Friday Favorites? Just when you think life is going to settle down……..Two weeks ago, I was in Big Bear for a scrapbooking weekend (yay!), and last week, the Princess had a dance competition (blog post coming). I think I have finally worked out a good routine during the week to balance work, kids/home/pets, and taking care of me, but it doesn’t leave much time for writing. I plan to work on that. But since the craziness for this week with the big job ended last night,  I found myself with time today to go WordPress lurking. I feel like I haven’t seen my virtual friends in forever! It’s been an awesome afternoon hanging out with y’all (No, I’m not southern, but my mom’s momma was…that counts, right?), so I finally have a real live return to Friday Favorites! Go read some good stuff, or not…

  1. This little snippet from bluebird of bitterness just made me laugh. I had to share.
  2. If you have a child on the spectrum, you know there’s a delicate balance between pushing your child (aka therapy), and accommodating him. It’s difficult for me as his mom, much less for me to ask someone who spends 6.5 hours with him a day, to decipher his mood and respond accordingly. Shawna at Not The Former Things had some insight she received in a comment to one of her posts. Okay, peeps, it gave me chills, and a few tears. Go read this. If you have an autistic child, you’ll be nodding your head. If you don’t have an autistic child, you’ll learn something.
  3. Colleen, aka Chatter Master, at The Chatter Blog shared a note from a friend. We all need friends like this in our lives, especially if they write cool notes like this.
  4. Ahhhhh….poetry that makes me see pictures in my head, like this one at Elan Mudrow.
  5. A lot of life is about perspective. We may not think we like something, or that it’s defective, until we turn it around. This particular gem at Bzirkworld makes that evident.
  6. There were so many posts from Jason, A Opinionated Man, today….I had a hard time choosing one. This, Shattered Glass, in the end was my winner for the afternoon.
  7. I find myself just loving words lately, and the way gifted writers use them, thus the poetry-filled shares today. But this one by Alisa Hutton on The Daily Crapper is beautifully crafted.

And now, you’re probably wondering where your Cute Overload link is…..I was destroyed to find out today they are no more. Oh, the site is still there, but no more posts. I’m so sad. So, for now, you’ll have to do with a picture of my littlest pet, Maizy. She, rightfully, assumed the new giant pillow pet that came into the house was her new bed. Imagine her surprise when we informed her it belonged to one of her humans?

Happy Weekend!

Maizy on the pillow pet